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Wednesday, September 19, 2007

I am planning on this being my last entry in Kevin’s journal. It has been 1 ½ years since our little sweetheart passed and our life seems to be falling into our new normal. I’ve been thinking about this entry for a long time and I have so much to say, but I don’t know where to start. I guess I can catch you up on what we’ve been doing…

Chris and I took Gracie to Kings Dominion for a few days before school started. You all know that she speaks of him often…she spoke of him there too. “Kevy wouldn’t be tall enough for this ride” or “If Kevy was here I could hold him on my lap and he would have liked this ride.” We had a really great time and we rode all of the rides with her – but you could tell she was still lonely because she was the only child. You can tell it bothers her. And sometimes she gets frustrated and sad and she tells us that it bothers her.

She is doing well in school although she doesn’t feel like going most days. She says that Kindergarten is harder than preschool because there isn’t as much play time. She is also going full days (7:30am – 3:00pm) and she is so tired once she gets home. I had sent an e-mail to her teacher explaining her home situation a little bit and telling her that Gracie speaks of her brother (and death) and we don’t do anything to hinder that at home and hope that they wouldn’t in school either. I don’t want her hushed about it because that is a part of her life. She never responded. Grace will tell me if that ever happens because I know it will make her sad or angry.

Gracie goes to church every Friday at school and she is learning a lot more about Jesus, God and Mary. We speak about religion at home, but now she has an actual religion class that she is really enjoying. She tells me that Kevin is lucky because he has 2 daddies now. God and Chris are his two daddies. She said yesterday that he has 2 mommies too because of Mary. I explained that Kevy has a lot more people taking care of him than she realizes. I told her that we had other loved ones pass away before Kevy and her were born that are helping take care of Kevy. His grandfather and great grandparents are all there fussing over him. That makes her feel good. She often talks about the day that she will get to see him again and how happy it makes her feel. It warms our hearts as her parents to know how much she loves her brother and how often she thinks of him.

Chris and I are both handling things OK I guess. We still have our “moments” and “Bad Kevin Days”. I seem to be a bit more emotional the last couple of months. I cry everyday; but I always have since Kevy left us. I don’t sleep through the night. I just can’t. I haven’t for the last 4 years so I should be used to it. I’ve started to get up and do things like e-mail or dishes rather than laying there crying. I still cry while I do these things, but at least I am getting something else accomplished. Sometimes people catch me crying and they ask me why. I believe that people think I shouldn’t be so upset about it anymore. It doesn’t hurt any less the longer he’s gone. In some ways, it hurts more. I’ve always been pretty tolerant of others in this regard because they can’t understand. And I honestly hope that they never have to understand because that would mean heartbreak for them. Gracie never asks me why Chris and I are crying. She just comes up to us and rubs our backs and gives us hugs to make it better. She tells us that we’ll see him again one day.
My sister wanted to borrow Kevin’s memorial video to introduce him to her new boyfriend and family. I watched it 3 times before she came to get it. I laughed and cried (but mostly cried) the first 2 times. By the last time I was only laughing and smiling. Gracie sat in my lap while we watched it. She enjoys watching the video snips on it and seeing how Kevy watched her so closely no matter what she was doing. He was so in to her. I sure do miss that giggle of his. I’m so happy that we have it on video so we can hear it and see him alive whenever we want to. But I always hear his giggle in my head whenever I think about him. I like to think that he knows I want to hear it and he comes and giggles for me and I’m the only one who can hear him at that very moment.

We went out to dinner a couple of weeks ago and Gracie saw a pregnant woman and her son. Gracie just kept staring at her and asking questions. She said things like, “Do you think he is happy that he will be a big brother?”, “I bet he’s happy that he won’t be alone” and “Do you think her baby will be healthy?” Chris and I finally had enough of her “pitifullness”. Chris leaned over the table and told her that he had a secret. She looked at me….we told her that her Mommy had a baby in her belly too. She was happy and she wanted to know how big it was and when it would be here. She has been very good about keeping it a secret. The baby is due in early May but they will take it a little sooner so I don’t have a chance of going into labor again like I did with Kevy.

I had my first appointment yesterday and the doctor was very happy to see me and happy for the reason I was there. She said I looked good and was proud that I had lost 40 pounds. She said that we had a lot to talk about. I told her that I had already thought about it a lot and had my mind made up about a few things: I will not have an amneo performed, I do not want to go to a specialist and I just want a few extra sonograms to check the baby’s heart function and I want the baby to have an ECHO once it’s born. That was enough for me. She said it was totally fine with her. She said I will have MANY sonograms. There are some non-evasive tests that can be performed such as extra blood work that wasn’t available 4 years ago and an extra sonogram with a perinatologist when I am 13 weeks to check the thickness of the baby’s neck. Somehow checking that can give some insight of certain defects. My first sonogram will be next week.

Sitting in the lab area of the doctors office staring at all of the baby pictures and announcements was a bit hard for me. I didn’t have that with Kevy. I looked over at my chart and Kevy’s prayer card was stapled inside. I tried my best not to get upset – and I didn’t. The nurse walked in and said that another person in the office had told her all about me. I didn’t say a word. There wasn’t anything to say. I just felt awkward.

I’ve been missing Kevy even more since I found out I was pregnant. I wish God could give him back to me so we can start over. I want Kevy to have a chance at a normal life and to live pain free and do all the things he never got to do when he was here. But, God had already picked out another for us. Gracie asks if we will have a healthy baby. Sometimes I think, “Of course we will. God wouldn’t put us through all that again.” But you know what? God knows that I’m pretty good at taking care of His special angels and He just may decide to give us another special baby. I will be happy with whatever happens. It is His will. I’m not so sure I know how to take care of a normal, healthy child anyways.

I have been keeping in touch with all of you for 4 years now. It has been such an emotional ride. So many ups and downs we have experienced together. Unfortunately, I have lost friends through this experience, but I have gained many more. Chris and I are so grateful for each one of you. We could not have gotten through this if we didn’t have caring friends and family. I want to thank my parents for taking such good care of Gracie during all the time we had to spend away from her. We are especially grateful for Nina. She loved Kevy like he was her own grandson. She wasn’t scared to care for him and touch him and love him. And he was extremely comfortable around her which made me feel good. I am thankful for our supervisors and companies that we work for who allowed Chris and me to have the time that we needed to be with Kevin. We were very lucky. Thanks to our co-workers who gave us their vacation time so we were able to be with our son and still receive our paychecks. And thanks to all those who gave to us to make paying Kevy’s bills not so painful. (By the way, money that we have left over in Kevin’s fund will be going towards Caring Bridge and John’s Hopkins Children’s Center. We will be purchasing a few rocking chairs for the hospital rooms and some baby swings and bouncy seats for the little ones to be in when their mommies and daddies can’t be there to hold them.) Chris and I are extremely appreciative of the JHH nurses that cared so much for him and us as a family. It made our nights away from Kevy a bit more tolerable knowing that he was in such good hands. We are grateful for his many doctors who helped him get as far as he did. We especially appreciate Dr. Schwarz who was such a big supporter of Kevin. I believe she knew what his final outcome would be, but she never let on about it and she always made us feel comfortable. I do hope that people have learned something from our experience. I’ve always said how much Chris and I have learned and changed as people for the better. We don’t take anything for granted. When you are feeling down, please try to remember that it could be worse. There are others that are less fortunate than you even when you think you have hit rock bottom. That is one thing that has gotten me through the last 4 years and will help to get me through the next 50.

I do have another webpage that I haven’t started working on much yet. It is themclanes.net I will start to update that webpage to keep people posted about our family. The cookbook is also just about finished. We can’t sell it, but we will accept donations if offered and that money will be used for the Children’s Center. If you don’t want to donate, that’s totally fine too. We will be more than happy to give you one. You can e-mail my mom if you are interested in a copy: rbroad6@verizon.net

Lastly, I need to thank the most important one, our son Kevin. I look at your picture every day and thank God for sending you to me, my precious angel. I’ve have always told you that a parent couldn’t be more proud of their son than we are of you. Even in death you are touching lives and positively affecting others. You have taught us how to appreciate things we took for granted before you came into our lives. You have taught me how to be a better mother. Your Daddy and I stop and notice little things that we had never took the time to notice before. Little things like a warm breeze or sunshine on our faces. I feel you in those things Kevy. You will always be in the hearts of so many. We were so blessed to have you. We will miss you and reflect on our happy memories of you every day until we meet again my precious little one. We love you.

Friday, August 3, 2007 6:06 AM

Elizabeth from JHH asked me to write something up for the State's Attorney's office in follow up from that meeting they had last month in regards to care for terminally ill children. I was more than happy to get the word out on the frustrations that me and my family encountered in the hopes that it will help somehow. It was hard to dredge some of this up again - and actually made me angry along with hurt - but it was necessary. Here is my statement:


I was asked to give some input on our hospice and home nursing situations that we had for our son Kevin McLane.

Kevin had heart and liver disease from Alagille’s Syndrome. We brought Kevin home from the hospital on hospice care when he was 7 months old. Hospice provided a nurse (RN) to check on him twice a week and also paid for his 22 daily medications which were delivered to our home. I appreciated the RN’s coming by to see Kevin. I needed his lungs listened to to make sure they were clear. I also spoke to the nurse to go over any questions or issues I had. Kevin was enrolled in hospice because of his liver problem. (Although he would have also qualified for his cardiac issues.) He was not a candidate for a liver transplant and his pulmonary stenosis would eventually lead to lower and lower oxygen levels in his blood and he would eventually pass away. In September 2005, we were told that Kevin no longer qualified for hospice care because his liver was stable and wasn’t getting worse. We had originally been told that since he was a child, he could qualify for hospice care and still seek treatment for him. We asked about having him qualify under cardiology, but we were seeking treatment outside of Johns Hopkins since they told us that they could not do anything to help Kevin. A doctor in Palo Alto, CA did say that he could help Kevin’s condition with surgery. It was at this time, hospice told me that he would not qualify under cardiology since a doctor said that he could help Kevin and they removed us from the program. Our son never got that surgery and he was dead less than 6 months after being removed from hospice.

I kept the pharmacist that hospice had used. Our medications would now cost us no less than $2,000 per month from co-pays and other medications that weren’t covered. Our insurance wouldn’t cover all medication costs. We also had Medicaid – but they denied many of the claims because the medications were considered “over the counter”. We had to have Kevin’s medications specially made because of his size, the dosages, concentrations and delivery method of the meds. Everything needed to go through his NG tube. The pharmacist had a difficult time working with Medicaid to get them to cover most of Kevin’s medications that our insurance wouldn’t cover. I found out later on, while trying to get some information for this legislative request that our pharmacist ended up paying portions of Kevin’s medications out of his own pocket and didn’t mention anything to us about it because he knew we didn’t have the money. If we had been able to remain on hospice, we wouldn’t have had these issues and the extra money coming from our pockets.

Our primary headaches and frustrations were caused by the mediocre home nursing care that we had for our son. First of all, to find a company to provide pediatric nursing and accept Medicaid from the Model Waiver Program was difficult. But to find nurses that actually had brains and common sense was even more of a task.

Our son required “awake and alert” caregivers. This meant that he needed someone to stay awake with him at night in case he stopped breathing or went in to cardiac arrest. We had nursing coverage from 11pm to 3pm Monday – Friday so my husband and I could work full time. Eventually we were approved for night nursing on the weekends also (11pm-6am.) The level of competency of the nurses sent to our homes was atrocious. We only had 1 nurse that spoke fluent English and she moved out of state so we didn’t have her for very long. The majority of these nurses come from countries in Africa who have obtained an LPN license in the US. An LPN license doesn’t take long to obtain and doesn’t provide any hands-on training. My son had a feeding tube that ran 24 hours a day. I understand having to train someone on your specific equipment, but they should know how to give medications through a feeding tube or how to assist putting in a new feeding tube.

My son was on a specific medication schedule. Certain medications couldn’t be given in conjunction with others or had to be spaced apart by a certain amount of time. There were also many different dosages. They varied from .24cc to 5.5cc per dose. The medication schedule was extremely detailed. Whenever we would get a new nurse, I went over every aspect of my son’s care with them for the first 2 hours of their shift. And I always told them that I was available if they had any questions.

I will give you some examples of the nursing issues: Kevin was also on a specific formula. The nurses did not have to make the formula (because I didn’t trust them to do it correctly.) I always had formula made in 24 hour increments. The formula was labeled “Kevin’s Food” in the fridge. I had one nurse give him regular cow’s milk the entire night directly from the milk carton. It made him extremely ill and he threw up for more than the next 24 hours.

I had one nurse come to the home at midnight and I didn’t even let her through my front door because it seemed as though she was on drugs or had been drinking.

There was another nurse who had been giving my son 10x his regular dose of a medication that I didn’t catch for months. Luckily I had come home early and saw the syringe on the table with the medication in it and questioned her about it. Instead of .24cc’s she was giving him 2.4cc’s. With his liver disease he had always thrown up excessively. But once this mistake was caught, his vomiting went from 40 times a day down to 5 or 6 times a day. I had to keep her on as his nurse because we were desperate and I couldn’t afford to lose additional time from work while trying to find a new nurse to replace her. This same nurse quit after I caught her over medicating him on methadone. (She quit because I had the nerve to question her.) While I had been trying to titrate the methadone to get him off of it and was having problems of withdrawal, I found out it was because she was giving him extra during her day shift to make him sleep. I reported her to the nursing company – but they are so greedy for money, they just ended up putting her on another case.

He needed to be checked often and his diaper changed at least every 30 minutes (due to malabsorption.) I picked him up one morning after the nurse had left her shift and he was absolutely soaked from shoulder to ankles in formula. The port on his feeding tube was open and no food (or medication) had gone into his stomach. Everything had spilled into his crib for hours. If she had been changing or checking his as she should have been, that would have been noticed.

I had come home from work one day and noticed that my son wasn’t moving his left arm and would scream when you would touch it. I called the nurse on her cell phone to question her about it. She said that he hadn’t moved it in a while – but he was just being lazy. I took him to the hospital and found out that it was broken in 2 places during her care.

These are just a few examples of our nursing problems. This was on top of them constantly coming late for their shifts, not arriving at all, constantly sleeping through their shifts and just being over all not educated. My husband and I spoke with the owners of all 3 nursing agencies we went through. They needed to be made aware of the ignorance and irresponsibility of the staff that they had hired. The owners didn’t care one bit. It was this experience that made me want to perform respite care for other families that needed assistance. Being a parent I know how much it meant to me to have someone who actually cared about my child and would want no harm to come to him. I know how much better it made me feel as a mother to have that peace of mind when I had to leave my son with someone who actually cared about him and could give him the level of care he required.

More education and testing for the home nurses should be implemented. Because of their lack of experience and training, many mistakes are made that are detrimental to the children they care for. The children are the ones who suffer. And it is the children who are the ones that should be made as comfortable as possible in these situations. They are already suffering through their hundreds of IV sticks, blood draws and surgeries. Additional pain and suffering caused by negligence and ignorance of these nurses can be avoided with the right measures.

Saturday, July 21, 2007 4:13 PM

We just got back from a vacation at the beach. It was very enjoyable for all of us. Of course we all wished that our Kevy was there to enjoy it with us. He would have liked the beach I think. Gracie talked about him A LOT while we were gone. We like to hear her talk about her brother. But sometimes it does get a little tough. Sometimes we just aren't emotionally prepared to hear some of the things she has to say. I almost cried the other night at dinner because she was saying that she wants to have a little boy when she grows up and she will name him Kevin because of her brother and it will remind her of him.

I was crying a few nights ago and it woke her up. At first she just put her arm around me and didn't say a word. Then she asked me what was wrong - but she already knew. I told her that I missed her brother and started to sob even harder. She started to rub my back and stroke the side of my face. She told me she misses him too. I know she does. She just seems to handle it better than me. She shows it differently too. But she does definitely show it.

I was in the water at the beach and I was thinking about my emotions and how they are like waves of the ocean. I can tolerate them coming at me and stand my ground. But every once and a while, I turn my back and one big wave comes and knocks me on my butt. I just have to get up again. But I can walk out of the ocean when I can't handle it. I can't do that in life. I do sometimes get really upset at inconvenient times and say, "Kevy, Mommy just can't handle it right now. I can't think about you right now." Then I feel guilty. Yep, there's that guilt thing with me again. I've been feeling guilty about my son since the day he was born. I was feeling guilty on my way home from the beach about the time when he was really sick at JHH and the nurse called me up at midnight and told me she overheard the doctors saying they didn't think he was going to make it. I had already taken sleeping pills and asked her to call me every hour. I knew deep down that it wasn't going to happen - but that doesn't matter. I could have gotten there somehow. And I didn't. What good does it do me to feel guilty about it? Nothing at all...and I know that. But that doesn't stop the feelings I have. I just wonder if I'll ever be able to let some of these feelings go. If not, I sure hope that I will be able to handle them better.

Friday, June 29, 2007 6:37 AM

Things went well at the dinner the other night. Of course we were a little bit late. The traffic at that time is awful. There were 9 other parents there who had lost their children. Ages 14 months up to 17 years old. The Attorney General's office had given us the questions they wanted to review prior to us arriving. Chris and I had sat down and gone through them and typed up notes for ourselves. They didn't stick to the questions and everyone went in different directions at times. Chris and I were able to give our input on certain things - especially hospice care. He wasn't pleased to hear that we had been removed from hospice care. The focus on most of the meeting was finding an in between for children - in between hospice and hospital. Some children are going to die, no matter what you try to do. Hospice doesn't normally take children and you don't want to be in the hospital any longer. Hospice doesn't allow for treatment of adults. Once you sign on with hospice, you cannot seek treatment. In essence - you are giving up. A parent will never do that. And the hospital setting is sterile, cold and uncomfortable. There are some things you can't do from home, but you don't require an admission into the hospital. Receiving chemo or blood products can't be done at home or hospice (because it is treatment.) But you don't always need to be in the hospital for it either. And that is what the main focus was on. I really wished we could have gotten into the nursing issues a bit more because I had A LOT to say about that. Once the meeting had ended, I went up to him and gave him our notes that we had typed, since we didn't go over all of the questions, in hopes that he would find something in there that was helpful. I am glad that they are reaching out and trying to improve end of life care for children and their parents. And I hope that we gave a positive contribution to that.

Tuesday, June 26, 2007 6:12 AM

Tonight is the night that Chris and I go to JHH to meet with the people from the state to go over provisions of care for children with life-limiting conditions. There were 7 questions that they sent us to help us prepare for the meeting. Chris and I sat down and went over them last night and typed up notes for ourselves. It was difficult and it actually made me angry and frustrated pulling all of these memories up again.

Going to bed was difficult for me last night. I was thinking about walking back in to the hospital again. We haven't been since Kevin passed away. I was wondering if I would have the courage to go up to the 6th floor to say hello to the girls - but I don't think I will. I just can't. I cried and cried last night. At one point I realized that there were only 2 times that I was able to hold my son without any tubes or wires attached to him. Once on the day he was born and the second on the night he died. I remember holding him that night bundled in a white sheet after he had passed away. It was strange to be able to walk around the room with him in my arms and not be tethered to any machines. But being tied to machines was how it was and that was his norm - so it became our norm quickly. It's amazing the things we take for granted in our lives. They can change so fast and people don't realize how good they have it.

Wednesday, June 13, 2007 5:54 PM

Things are going OK for all of us. Those horrible little moments sneak up on me and Chris every once and a while. We try not to let them get us down - but it's so hard. I have a couple a day. They can last from 2 minutes to an hour. But the majority of them are pretty short. I'm done with worrying what people think when they see me crying driving down the road, pumping my gas or in the grocery store. People around me in my daily life are used to it.

I took Grace to the pool to get some passes late last week. The woman asked for my phone number so I gave it to her. She typed it in her system and said, "So you will need 4 passes because you are a family of 4." I stared at her for a couple of seconds and then mumbled, "What?" She said, "Chris, Karen, Grace and Kevin. A family of 4." I said, "No. We don't need 4 passes. Kevin has passed away." She said, "Oh...sorry" and deleted him from her computer. I honestly don't know how they had that information. Kevin had never gone to the pool or anything. It was weird and uncomfortable.

Elizabeth, the bereavement coordinator at JHH sent me an e-mail today:

Hi Karen,
This past year the Maryland General Assembly passed several bills related to quality care at the end of life. One of them requires that a report about pediatric care be submitted to the legislature by Dec 1, 2007 about the services offered in the state. The Asst. Attorney General of Maryland, Jack Schwartz, has asked to meet with some bereaved parents to discuss services available and barriers to care. This will be at a session on Tuesday, June 26 at 6:30 pm (place to be determined-may be here at Hopkins but will be around Baltimore). I know that you and Chris had some frustrations and concerns with services available for Kevin. Would you be interested in participating either at the session (which will include dinner) or by writing some of your thoughts? (No obligation at all, I'm just offering this as an opportunity.)
Thanks!
Elizabeth

Chris and I will be attending the session and hopefully we will be able to contribute. I was talking to someone today that isn't fully aware of our situation and explained that because of some things that happened to Kevin, protocol was changed in the hospital. It made me feel good that he is able to help other children from his experiences. At moments he suffered, but others will not suffer because of that. We had him for 2 years and I can't say it enough that a Mommy couldn't be more proud.

Friday, June 1, 2007 6:41 AM

Have you ever tried crying with your mouth wide open? I must say, it is quite difficult. I broke a tooth and had to go to the dentist yesterday. My regular dentist, who is aware of my situation, wasn't in and I had to go to his partner. Everything was just fine, but I ended up having one of my "moments" towards the end of my visit. Tears were just streaming down my face and running into my ears. He kept asking if I was OK and I would shake my head 'yes'. After I was done, I kept crying. That poor guy didn't know what the heck was going on. And honestly, I didn't have it in me to tell him what was wrong with me. I just didn't want to say those words. It would have just upset me even more. So I thanked him and left.

On my way out, the receptionist stopped me and asked if things were going OK. Then I cried more. She is aware of what happened to us so she was very sympathetic. I told her what happened and asked her to explain to the doctor that I'm not nuts. She said she would. I think what triggered it for me was driving by the funeral home. I normally just don't look in that direction, but I did yesterday. The parking attendants were there waiting for people to start pulling up for a viewing.

It's amazing how many different things can trigger my emotions. The smell of flowers at the market, a song, the curly hair on a little boy I see, even the curly hair of a teenage boy I see that makes me wonder what Kevin would have looked like at that age. We are missing out on so much with him and that upsets me at times. I had a few issues while we were away on our mini vacation. I wanted Kevin to be there so badly. But I have to stop and remember that we made his life as enjoyable as possible and that is what counts. I can't change anything so I have to be satisfied with that I had. And I am.

This song always reminds me of Kevy. The dance being his precious little life.

Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you'd ever say goodbye

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance

Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance

Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance

Friday, May 18, 2007 6:36 AM

We went to the memorial service at JHH last night. We took our big photo collage of Kevy that we had made last week and put it up with the photos of the other children. They had a guest speaker to had lost his son 31 years ago at the age of 8. He did pretty well. One thing he spoke of was when he would go to the cemetery and was there at his son's grave, it was like he was in a different world. Then when he would turn around to go back to his car, it was yet another world. He had to go back to the world without his son. Back to everyday life as he now knows it. It is a different world for those of us who have lost our children. He mentioned how you would wake up in the morning and for a split second, before you are totally awake, you forget. You forget that your child isn't there. It's totally true. It happens quite often for me. I used to burst into tears when that moment of reality hit me. But I'm getting better at handling it.

During the ceremony they have a slide show presentation of the kids. We had sent in the one of Kevy in the kitchen sink with bubbles on his head. People laughed when they saw it. It made us feel good. Afterwards, we went down to a reception and we had time to look at the other pictures that parents brought to show off. They were such beautiful children. Honestly, I just wanted to stand next to Kevin's collage and show him off to everyone and talk about him. I'm sure every parent there wanted to do that. Show off our kids. That's what we want to do. Of course, I couldn't stand there and do that - but I sure wanted to! "Hey everyone, come see our boy - isn't he a doll?" We got to see a couple of Kevy's nurses, AnnaRuth and Megan. We got to see a couple of doctors (PICU doc and an anethesiologist). The anesthesiologist was funny. She walked up to us and said, "Mr. and Mrs. McLane? I put Kevin to sleep many, many times!" We remembered her. She asked what happened to him and we told her. We did OK. Actually, we did OK all night.

The ride home was really long due to construction traffic on 95. Chris and I were beat. But we both enjoyed ourselves and were happy that we got to see some JHH people again. We'll go again next year too.

Monday, May 14, 2007 6:33 AM

I hope all of the Mommy's out there had a wonderful Mother's Day yesterday. Chris and Gracie gave me beautiful cards and some perfume. I did my best not to wallow in missing Kevin - but honestly, I was a bit cranky most of the day because of it. We went to church at 7:30am and there were several times I wanted to cry. Fr. Val gave a touching speech about mothers and all that we do and go through for our children. Then he had all of the Mother's stand up and everyone clapped for us. It made me think of all we had to do to take care of Kevin - but never complained. I miss changing his diapers and having him stick his little feet in my face to smell them. He cracked himself up with that one. I closed my eyes for bed last night and remembered him calling me, "Mum, Mum, Mum..." and I remember coming home from work every day and he was totally fine until he saw me - then the acting started. His face would change, he would whine and hold his arms up for me. It was his pitiful "come pick me up Mommy" act. He was a smart little guy. And it usually worked. Oh, just to hold him one more time...it would be wonderful, but it wouldn't be enough.

Chris and I are going to the Memorial Tribute at JHH on Thursday night. We are making a photo collage to take with us. I like to look at the other kids' collages also. All of us there show our kids off like any proud parent. Ours were just taken away from us too soon. We also submitted his tubby picture (with suds on his head) for the slide show. I think I can handle it better this year than last year - but I'm not sure. I cry when I think about it. At last year's tribute Kevin's loss was very, very new and raw for me. It still hurts a whole heck of a lot, but it's not so new. Although some days it feels like it is.

Tuesday, May 8, 2007 6:20 AM

Gracie was on her way into bed last night and she asked me if angels sleep. I said, "I think they need to rest a little, but not as much as we do. Why?" She said that she wanted Kevin to watch over her at night, but she wanted him to be awake. I told her that he could stay with her and watch her until she was asleep and then he could go rest and she was totally fine with that. Then she said, "Mom, I really, really miss my brother." It's heartbreaking. You want to keep your kids safe and pain free. We couldn't do that for Kevin, but we did our best. How can I do it for Grace? She often tells me she has a broken heart because she misses Kevy. All we can do is listen to her and reassure her that all will be fine. I don't know what else I can do. I just can't take her pain away. It was difficult to see Kevy go through all he had to and now he's gone and Gracie is going through it emotionally. We give lots of hugs and kisses - but it just isn't enough. She wants him. So do we....

Tuesday, May 1, 2007 6:22 AM

Sorry it's been so long. We're all doing OK. A few days ago I was going through her toys asking if I could get rid of some things in a yard sale. She said, "No, but you can get rid of that" and pointed to another toy. I said, "But that is Kevin's toy." Very matter-of-factly she said, "Mom, he's dead." Well, I just sat there stunned for a moment. She's right. He doesn't need it. We don't need it. I just thought we should save it in case we had another child. It's a cool toy! She said, "OK, you can keep it for my new brother or sister." I wondered, 'who is the adult here?' It felt totally backwards.

I also had the parent/teacher meeting at her school. Everything was going just fine - but her teacher brought up Kevin. I'm getting better at handling that - but I didn't that day. I felt bad for her. I don't want people to feel bad because I feel bad. Anyways, Gracie is doing pretty good. But, she has some emotional issues. After speaking with her teacher, we felt that it would be a good idea to have her see a child psychologist. She has changed a lot since her brother died. I thought that maybe they were age related issues. But I asked Nina (who has raised and babysat a zillion kids) and they aren't age issues. The teacher asked about a counseling session for bereaved siblings, but there isn't anything out there for her. Believe me, I've looked. So, I will speak to Dr. Uma about getting a referral for a professional to speak to her. I'm not so sure about how much they will be able to get out of her, but if they are good at what they do, then they should be able to get her to open up.

She sleeps with a bear that has stiches down it's chest. She's become very attached to it. She says that it reminds her of her brother. I'm very proud that she still keeps Kevin close to her heart. I just want her to be able to get out any frustrations and anger she has about losing him. I know it's not easy because I haven't even accomplished that totally myself. I guess I can't ask a 5 year old to do it either. I guess I just want her to learn how to show it and handle it since it will be with her for a while. We'll see how it goes.

Friday, April 20, 2007 6:13 AM

Either I don't have people talk about my son intentionally because they don't know what to say or...they ask WAY too many questions. I had my first experience with the overly-interested person yesterday. Believe me, I'm not complaining. I will find that happy medium eventually. This person was aware of my son being deceased - she had just "forgotten". So, once I gently reminded her, the questions started. They got a little bit personal. Then she wanted to know how Gracie was handling it and if she thought it was her fault that he died. I said that she didn't and she had been talked to about this since she was 2 years old when he was born. I said that she talks about him every day and mentioned that when I asked her to help me with the Shake N Bake chicken the other night she said, "No, Kevy can help you" and walked away from me. This woman said, "Oh, so she's in denial. She doesn't understand that he's dead." No, she totally understands that he's dead. And she is not in denial. She knows that she will never see him alive again. She knows that her brother will be there in heaven when it is her time. I didn't bother to tell the story about Grace talking to him because she wouldn't understand. I wouldn't want to see the puzzled look on her face anyways. You all may very well get a puzzled look on your face when I write about these things - but at least I don't have to see you doing it. I believe. I have to believe.

Do you have any idea how miserable my life would be if I walked through it knowing that I would never see my child again? I can't live like that. It's one thing that keeps me going. Can you imagine the feelings I get when I am alone in a room and I think about my son and I get tapped on the back by nothing? How I feel when I think about him and I can smell him suddenly, even if only for a moment? It could all be in my mind - but I choose to believe. Because of my son, I am no longer afrain of death. Not for myself and not for my loved ones. So, maybe I should go ahead and tell people about our experiences and that Gracie DOES talk to her brother because she sees him there in front of her. Maybe they'll think we are weird - or maybe they will choose to believe.

Monday, April 16, 2007 6:17 AM

I need to put up new photos. He isn't smiling in these pictures so I need to post some with smiles. The Federal Express guy asked me how Kevin was doing last week. I held myself together pretty well. His face lost all expression when I told him that he passed away last year. I didn't go in to detail because I couldn't handle it (and I don't think he could either.) I just said that we went to CA for heart surgery and he got sick before the surgery could take place and he died. Then I walked away and cried in my office - but just for a minute. I was thinking one night that I could tell people that he is OK now if they ask me how he's doing. I could say that he is all better and just leave it at that. He is all better. He's perfect. But that would be misleading. Eventually, people asking me about how he's doing will stop. But I face a lifetime of people I meet asking me about my children. It's OK, I'm getting better at it.

I do a lot of thinking at night when I'm lying awake in bed. I have a picture of Kevin by the bed in an angel frame. I try to stay away from TV shows at bedtime that will upset me. Especially documentaries or stories of sick children. But sometimes I can't help myself because I want to watch to make sure they are OK by the end of the story. It's not too often that there are unhappy endings. Nobody wants to hear that their child is going to die. Chris and I heard it several times. Each time is just as painful as the first. It doesn't get any easier. But, as these conversations came up, I started to not believe. I remember keeping the possibility in the back of my head that it COULD happen, but not that it WOULD happen. I didn't want anyone to think that we were naive about it or in denial. We weren't - at least I don't think we were. You can't get denial mixed up with having hope. There is a difference. If Chris and I (and you all) didn't have hope - Kevin wouldn't have gotten as fas as he did. I believe that if we had given up, he wouldn't have survived to 2 years. I'm babbling - but it's something that was on my mind. But I think physicians, surgeons and nurses need to understand the difference. I see that they get frustrated with parents in situations like ours. Of course as a parent you want to hang on to your child with everything you've got. Do they expect that when they tell you that your child is dying that you will just say, "OK, thanks...we'll be on our way now." Our last doctor expected Chris and I to do that. The PICU doctor in CA. But we hoped and fought as long as we could and so did Kevy. Hope obviously doesn't always get you through - but it can take you far. Chris and I still have hope - we just hope for different things than we did before.

Mommy misses you Kevy...

Friday, April 6, 2007 6:40 PM

His Daddy had a rough day today. I wasn't doing so hot myself last night or this morning. It was just carry over from the last 4 days. Chris had a chance to get to the cemetery today to visit and talk to Kevin for a little while. Today is the day we brought him home 3 years ago. I'm not upset especially since it's that anniversary - I just get upset period. I will get emotional and tear up at the strangest times and places. People ask me how I'm doing and I just say, "Eh, I've been better" or "Not so good lately." They ask what is wrong. I tell them that I miss my son. Everyone is understanding. I need to be more understanding of myself. More forgiving actually. I lay in bed at night and go over my "wish list". I add different things to it just about every day. I wish that I held him more during his last days. He had a lot going on and it was complicated to do so - but when I did, he was relaxed because he was in his mommy's arms. I wish that I could take my claws out of Gracie a little bit. She's the only baby that I have left and I have gotten over-protective. I wake up at night and check to see if she is breathing. If I don't see it at first glance I get this horrible sick feeling in my stomach. If I don't learn to get over this, I will start to get on her nerves as she gets older and she may distance herself from me. I know that she will understand why I am like this - but it will still bother her. It would bother me. Well, I'll just keep adding to my "wish list" as the days and months go by. I need to have patience and understanding of my own self with the situation. I've been learning a lot these past 3 years and I'll keep learning and adjusting to the new experience of being a bereaved parent.

We hope all of you have a wonderful Easter! Take care.

Wednesday, April 4, 2007 6:36 AM

I have hit another one of those rough patches. Normally I just have some bad Kevin days - but this is lasting a bit longer. I'm not sure if it has to do with the season or not. I have been thinking about him almost constantly the last couple of days. They are all happy thoughts - but they make me cry. Someone could just say his name to me and I would fall apart. God, I miss him so much!! I saw a Robert's Home Medical truck the other day on my way to work and I started to cry. (They are the ones who delivered his oxygen and supplies.) I keep walking into his room upstairs and just stand in the center of the room and look around. And I inhale through my nose. The smell of his room reminds me of him. His crib is down, but everything else is the same.

Chris tells me to think of happy times. I already do. I still have fleeting moments of bad memories - but it's getting a lot better. Thinking of the happy times make me sad too right now. I know this will pass - it always does. But the last couple of days have been pretty bad for me emotionally. No sleep and lots of crying. Plus I'm catching a cold and I feel icky on top of everything else. But I always manage to put a smile on my face somehow. I don't want people to know that I'm sad. It just makes them sad too. I'll push through and it will get better.

Sunday, April 1, 2007 9:51

Those daffodils were still at the cemetery this morning. Unfortunately, they took away his little truck that has been there for more than 6 months and his teddy bear. That's OK, we left more treats for him. We always come prepared, but are still annoyed that they remove his toys. I know there are rules, but if they aren't mowing the grass yet, why can't they just leave it alone until they do?

I smile when I look at the picture of his in his tubby - but it also upsets me at times. I look at his skin and I remember how it felt. I can close my eyes and so vividly recall how soft he was. We miss our boy so much. Now was the time of year that we first brought him home from the hospital. Good Friday was the day. We were scared. We didn't know how to take care of him at home. But we had learned a lot by taking care of him in the hospital and we did it. We did a good job. He was so happy at home and he flourished. So did we as parents. We look at his little memorial garden every day to see what surprises bloomed for us overnight. It's a beautiful flower garden. I'll take a picture to post it for you.

His recipe book is finished and ready to go to the printers. Mom said there are over 500 recipes in it. We will sell them and the money will go to Caring Bridge. I will let you know when they arrive if any of you are interested. You all are the ones you participated and submitted the recipes that made the book happen. Then the next step would be his journal - his life - on paper. I'd love to share his story with others. He's touched many - he can touch more, even after his death.

You all take care.

Monday, March 26, 2007 6:06 AM

We went away for a couple of days to Williamsburg, VA. Gracie was finally tall enough to ride the roller coaster with a double loop in it. (She made us go on it 5 times with her.) It was nice to get away - but my little boy was on my mind a lot. I ended up crying myself to sleep on our first night because I was just missing him so much.

The day before we left I had someone in my office talking to me about my weight. I guess they think that they are helping - but they aren't. I'm working on it. She is someone that doesn't know me - or my past. She was telling me that it isn't healthy for me and I could have a stroke or heart attack. Then she had to tell me how life is too short - blah, blah, blah. I had to stop her because I was feeling the need to reach out and choke her. I said, "You have to stop. I don't need you to tell me that life is too short. I'm well aware of how short life can be. I lost my 2 year old son last year." She gave a huge gasp, took a step back, pointed at me and said, "That was you! Oh, nobody should ever experience the loss of a child." Right. So I proceeded to tell her that I put my weight on sitting in a hospital with my son for 7 months and then sitting on the couch with him at home for another 7. You can't get much exercise when you are tethered to a feeding pump. Then, it's hard to lose weight once your child dies because of the depression. I proceeded to tell her that I was working on it and I had lost almost 40 pounds. I wasn't mean - I was saying it 'matter of factly'. OK, maybe I was just a teeny, tiny bit terse. I was annoyed and I think I had a right to be. She didn't know me. But now she knows a little more about me.

We got home on Sunday afternoon and went to the cemetery. We had given Kev some angel wind chimes. We put them in his tree. They were gone. They didn't even last a week. They didn't blow away. Even if they had fallen off the tree, they would have been on the ground around his grave. It's really sad that someone would take them. I'm going to get more. And we are going to take a ladder with us and hang them really high on a branch and attach them so firmly that they will need a blow torch to get them off. They had also cleared away all of his decorations and little animals. I was prepared for that and we put more down for him. Gracie wanted to leave daffodils for him this time because the deer won't eat them. In the year that he's been gone, we have never left yellow flowers. But we left 60 daffodils for him yesterday. They should still be there when we go back on Sunday....

Monday, March 19, 2007 6:12 AM

Gracie told me the other night that she had a nightmare the night before and she didn't want to go to sleep again. I asked what it was. She said it was about Kevin. She said she misses him and when she dreams about him, she wakes up sad. I asked what the dreams were about and she just said, "Kevin". I told her that just because she dreams about him and wakes up sad, doesn't mean its a nightmare. She said it isn't a scary dream. I believe that loved ones can come to visit you while you sleep. I told her that I dream of him too, but it makes me happy. Sometimes it makes me sad because it reminds me of how much I miss him. I think that is the same with her. Chris and I feel that Gracie thinks about her brother much more than she lets on. We feel bad that she hurts. But we are also happy that she remembers him so well and hope that her memories don't fade too much. Us talking about him and recalling our memories will help make sure that doesn't happen. He is alive in our hearts.

Sunday, March 11, 2007 9:10 PM

Our Friday was wonderful. Chris and I spent the entire day together. Our first stop together was the cemetery. We had a dozen colored balloons for him and 3 really, really big balloons. Elmo, Good Night Care Bear and a huge Winnie the Pooh face. We took 2 chairs with us and Kevin's photo albums and we sat at that cemetery for almost 2 hours. We also took a wind chime that has a stained glass angel at the top of it and put it in his tree. It was nice sitting there listening to it's music as we looked through his photos. There were a few tears as we looked through his photos - but there were a lot of smiles and laughs shared between us. It was a really nice day outside on Friday. Then we said goodbye to our little boy and went on to lunch. Later on we watched home movies of Kevin. They were really great to see. Again, a few tears were shed - but we really smiled and laughed watching our precious boy. We couldn't get enough of him blowing us kisses, hugging Barbie's, saying "Bye" and "Ball", waving backwards, playing with his toys, playing one-eyed peekaboo and one armed "so big", singing into his microphone (that was hysterical) and tons of smiles, raspberries and closing his eyes with every little giggle. He was such a doll. We miss him so much. We took a picture of his grave so we'll post that for you soon.

We had received a card from Kevin's gals on the 6th floor. They all still think about him and miss him. We also got a few other cards of remembrance and the neatest plant arrangement from Mary R. It is like a little terrarium with different plants and an angel in the center. It's like a little rain forest. Gracie saw it and immediately asked if there was a lizard in it. I told her there wasn't. So she asked if there was a turtle in it then. I said, "nope". So then of course, she asked if we could put a lizard or turtle in it....again, "nope".

Chris told me that he was playing hide and seek outside with Gracie today. All of the sudden she told Chris that she found him, but now she had to find Kevin. She found him over by the chimney and said that "Kevin is a better hider than you." And then it was Kevin's turn to be "it" for tag. Chris went running towards the porch and Gracie was yelling, "Hurry, hurry, he's gonna get you!"..."Oops, he got you!" (I guess Chris can't outrun an angel.)

Thank you all again for keeping us in your thoughts and prayers. Our love to you all!!

Friday, March 9, 2007 7:55 AM

It has been one year. One year since we last held our little boy in our arms. One year since we got to play one-eyed peekaboo with him. One year since we heard his cute little giggle and see his charming smile.

I've been emotionally screwed up these past couple of weeks leading up to Kevin's Angelversary. I re-run his last days in my head a lot. I'm temporarily at a new place of work and a few people have asked me how my son is doing. I haven't been able to tell them without tearing up. I've always tried to be so strong. But I read something the other day that made sense to me. "If you can't fall apart after losing a loved one, then when can you fall apart? Falling apart is what must happen so that you can put yourself back together again in a new form."

I realize that Chris and I could not have controlled the outcome. I am still learning to come to terms with that. Even though I think if things were done a little differently Kevin could have been with us longer - but the final outcome would have been the same. We couldn't fix Kevin even though that is what we desperately wanted.

Chris and I will be spending the day together. I have ordered a bunch of balloons for Kevy. We will pick them up and take them to his grave and sit with him for a while. We will talk about our memories of Kevin and rejoice in his life. We are going to watch our home movies of Kevy too. I'm a little bit excited because I love the video's of him playing in the tubby and playing with his toys. I can hardly wait to sit down and watch them. It's comforting to hear his voice again and see him alive rather that staring at pictures all the time.

We thank all of you for helping us get through this past year. It's been tough on many.

Sunday, March 4, 2007 8:16 AM

I cried on my way back from picking up chicken for dinner last night. The telethon for the Johns Hopkins Children's Center is on the radio. They talk about the success stories. I thought about calling in and telling them my story. Just a short part of it. I was thinking how at the moment when we were told that Kevin couldn't come home - that he wouldn't make it home, how I wished that we were home - or at least at Hopkins. Because it was like a home for Kevin. When he died and I was holding him I remembered thinking to myself that nobody at that hospital was affected by Kevin's death. It was just another unfortunate ending to a child's life and part of their job. If we were at Hopkins - many people would have been affected. Many people would have cried - rather than just me and Chris. We cried alone in that hospital room for hours holding our son. It wouldn't have been that way if we were at Hopkins.

Wednesday, February 28, 2007 6:02 AM

I don't know why I get these horrible feelings and memories at the worst moments. I was in a meeting yesterday and all of the sudden, in my mind, I was in Kevin's hospital room. His last hospital room. He had already passed and he had been bathed. I was holding him again, wrapped in a white sheet. But he was cold. I wanted to cry so badly at that moment. I remember laying my son down in that hospital bed and having to walk away from him. I wanted to get up and run out of the room to scream. But I couldn't. It took a lot of strength for me to stay sitting in that chair and hold back my tears. I had to push those visions out of my head. It's been almost a year. I think that others wouldn't understand what's wrong with me. I feel that they would say to themselves, "She can't still be that upset about it."

Others who have experienced a loss say that eventually all of your memories turn in to good ones and you can remember your loved one without crying. I can do that sometimes...but not all the time. Maybe its because I still have some feelings of guilt and regret. Things that I would like to do over. I wish I spent all of my time with him. I hope that I can give those feelings up someday.

I was upset this morning remembering the frustration of how long it took for us to get Kevin back home from California. It upset me all over again. It's in the past. I have to let it go. There is a lot I need to let go of...I'm just having a hard time doing it. Baby steps right?

There it is again....it keeps popping up: "If you're happy and you know it clap your hands...."

Tuesday, February 20, 2007 8:13 AM

I'm not feeling so hot so I'm staying at home today. It's lonely so far. Chris and I had to dig Kevin out on Sunday. It was interesting trying to walk across the frozen ice/snow trying to get to him. Of course he was easy to spot with his pinwheel blowing in the wind, his big red hearts sticking out of the ground and his little lamb and monkey clinging together at the base of the vase. Chris and I immediately knelt down and went to work. It was pretty pitiful. We only had a purple beach shovel and a toothbrush to work with. But they worked. It only took about 30 seconds before our knees were in pain from the ice. But, we kept digging. I took out the first chunk and saw his little face staring up at me. I said, "There you are baby boy!" We got his marker all cleared and the animals dug out from the snow. Chris cleaned out the letters with the toothbrush and it looked perfect.

I'm having some issues again with my sleep. I think it's because we are coming up to one year and I go over things in my head about his life and his last days. Chris and I are both off of work on March 9th. We will spend the day together and spend some time at the cemetery. Chris mentioned at his grave on Sunday how it seems like so long ago. I said that it does in some ways - but just like yesterday in others.

I held him in my dreams last night. It wasn't for long, but it was bliss for those few moments. I can recall his warmth. Specifically the warmth of his legs. He was in a onsie. I didn't say anything and he was quiet. We just snuggled close. I wish it could have gone on forever.

Wednesday, February 14, 2007 6:04 AM

I had a dream about my boy last night. It was pretty vivid. I had a baby...it was Kevin. He had been reincarnated as himself. God was giving us another chance. A chance for Kevin to be healthy and happy. He was giving Kevin a life without pain. I woke up crying. I remembered so many of those IV sticks Kevin had to endure. It made my so sad to try to comfort my son as a needle was being inserted into his ankle or the top of his foot. He had many of those because his access was so bad and his veins had been beaten up by the other IV's. I know, I know - it's over. He is no longer in that kind of pain. But I am still living with the memories of the pain that he did endure. It was so hard for Chris and I as parents - but nothing close to what he went through. I hope he knows that we would have taken all of the pain for him if we could. In a heartbeat my little baby...in a heartbeat.

Mommy is missing him a lot today...

Thursday, February 8, 2007 6:32 AM

We all did OK at the funeral home and the funeral itself. Gracie did well at the funeral home. She wanted to see all of the flowers and go see Mrs. B and say a prayer. It took me a little bit of time to be comfortable enough to approach the casket. But once I did I was fine. She looked good. I couldn't help remembering Kevin in his casket. He didn't look like himself at all. I wished he had looked as good (or as much like himself) as she did. But then again, Kevin had been passed for a week before we could even get him home. (That still makes me a little angry.) I only had one issue at the funeral home...someone approached me about Kevin and our loss. I started to get teary-eyed. And she kept talking. I remember thinking to myself, "Please just shut up." She kept going on and on. I know she was trying to make it better for me, but it was just making it worse. I finally just looked away from her, tuned her out, and regained my composure. She was sorry for making me feel bad. A funeral home isn't really the place to bring something like your deceased child up. She patted me on the head and told me it would be OK. That I would have another one. It's not like I dropped my ice cream cone on the floor and you get me a new one to make it all better.

I was in my office yesterday and a woman came in that had been attending a conference. She saw the pictures of my kids and of course Kevin's stood out to her. She said, "Oh, is this your baby? He's so cute! How old is he?" I hesistated for a few seconds thinking to myself, "What do I say? Two? Three? Would have been three?" I said, "He was two when he passed away last year." She was shocked. I guess it's not that often that you run in to someone like me - a bereaved parent. There are so many of us out there - but you just don't come across us too often. I know I never had until Kevin came into our lives. Anyways, the poor woman started to cry! Not boo-hoo or anything - tears just welled up in her eyes. I hate having that affect on someone. She had some questions and I answered them. She mostly had questions about Gracie and how she was coping. Some things got me a little emotional, but I held back my tears. This woman said that she only had one child. I asked if he had any issues being an only child. She said that he doesn't. I wonder about Gracie being an only child. I guess there are pros and cons. Anyways, she wished me luck, told me to have more, and was on her way. I'm sure a little extra grateful for her own child.

I turned on the TV the other day and the Wiggles were on singing Hot Potato. Honestly, it instantly upset me. I just had this sickening feeling in my stomach within a split second of hearing the song. I had to turn it off. I've had the "If You're Happy and You Know It" song stuck in my head for DAYS!! It doesn't matter what I'm doing - it just pops into my head and I have to sing it. But every time I do, I recall my Kevy clapping to the song. He loved that one. Maybe he's the one putting the song into my head? You never know.

Monday, February 5, 2007 6:33 AM

We did our weekly routine of going to the cemetery on Sunday. It's quite cold outside so we don't stay as long as usual. Gracie makes us move a litter faster than we'd like. Chris and I stay a while when its the two of us. We'd be comfortable setting up a folding chair and hanging out for a while. I got out of the car and was walking across the cemetery towards his grave and I had this feeling of anticipation. I was excited. It was like all those times when he was in the hospital and I was walking down the hall getting closer to his room. I knew I was going to see him in an instant. I would pop my face into the room and he was happy to see his Mommy. That's the feeling I had yesterday. But the second I stepped up to the headstone with his precious little face on it - it turned to sadness. I don't know why I got excited in the first place. He is there waiting for me in a way - but not how I wish. His grave is decorated with pretty flowers and covered with hearts for Valentine's Day, stuffed animals and a little windmill. We took down his ornaments from the tree, but kept the silver and red decorations for Valentine's Day. We'll take those down after next week. I told Chris yesterday that our boy has the prettiest grave around.

We will be attending a funeral home this evening for a family friend of the McLane family. Grace wants to go with us. I have reservations. Not about her actually, but about what others will think. I believe that people will frown upon us taking her there being so young. But they don't know that she is all too familiar with death and is comfortable with the situation. I feel like I am too. I feel differently when someone dies now. Different than before Kevin died. I will miss that person and am sad that they will no longer be in my life in the flesh. But they are there in spirit. I know they will be there for me when I need them and I can call on them whenever I need to. They are happy where they have gone and I will be with them again one day. It's a new life for them (and me). It's a pain that you learn to live with, but isn't as sharp because knowing where they are is such a wonderful place. Plus, they get to play with my Kevy.

Thursday, February 1, 2007 6:29 AM

Here is a link to a sweet song on the compassionate friends network:

http://www.compassionatefriends.org/precious_child.htm

PRECIOUS CHILD

Words and Music by Karen Taylor-Good

In my dreams, you are alive and well
Precious child, precious child
In my mind, I see you clear as a bell
Precious child, precious child
In my soul, there is a hole
That can never be filled
But in my heart, there is hope
'Cause you are with me still

In my heart, you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart

In my plans, I was the first to leave
Precious child, precious child
But in this world, I was left here to grieve
Precious child, my precious child

In my soul, there is a hole
That can never be filled
But in my heart there is hope
And you are with me still

In my heart you live on
Always there, never gone
Precious child, you left too soon,
Tho' it may be true that we're apart
You will live forever... in my heart

God knows I want to hold you,
See you, touch you
And maybe there's a heaven
And someday I will again
Please know you are not forgotten until then


In my heart you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart

Thursday, January 25, 2007 6:07 AM

I hit a rough patch the other day. Gracie brought some pictures to me and she wanted me to look at them with her and talk about them. They were of Kevin with Anna Ruth on his 1st birthday. He was in his little Raven's outfit that we had bought to appease Anna Ruth. (She's not a Skins fan.) Gracie was asking questions about her and him and about his special day. He had an IV in the top of his hand. She had questions about that and his pain. I told her that it only hurt for a second or two and then he was fine. I didn't need to go in to how many times he had to be stuck for one IV and all of the pain he endured. But it was in my head and it hurt me to think about it. It's hurting me right now. I remembered all of those IV's he needed and the ones that were so hard to get that took several tries. I was there for 95 percent of them - but not all of them. I was thinking of him this morning. I wanted to hold him SO badly this morning. The want was a bit stronger than usual and of course it made me cry. My feelings of guilt still rear their ugly head but it's not nearly as bad as it was before. His nurse Megan had sent me a note some time ago and I read it when I start to feel guilty. It helps. Here's part of what she had to say:


I just wanted you and Chris to know that you are thought of often. I am so glad that we had a chance to share part of our lives together even though the circumstances weren't the greatest. I still read your caring bridge site and check in on you guys. You talk a lot about regrets. Regrets about not always being there. I just want you to know that there was never a time that us girls weren't fighting over taking care of Kevin. I can remember rushing so that I could keep Kevin company. It was a joy to be with him. He made us all laugh. We still think of him often and laugh. I carry a part of Kevin and you with me everyday. Kevin taught me what it meant to be an advocate for others...especially others with small voices. I hope that someday soon you can let go of your regrets. You are a wonderful mother and took the best care possible of Kevin. I know that Kevin's birthday is coming soon. Please think of all the wonderful memories and let the others fade away. Take Care.

She's sweet. She's the one that was holding Kevin on Christmas morning when we walked in to find him playing in her arms.

Gracie has been doing well. She draws a lot of family pictures at home and at school. Kevin is always in them. I haven't seen one without him in it yet. I hope I don't. There is an additional person in the pictures again though...I asked her who it was and she said it is her new sister that will be in my belly one day. (NO - I'M NOT PREGNANT!!) Anyways - I asked what she will do if I don't have a girl. She said she would erase it and draw a baby boy. She said she is OK with either. I asked what she will do if we don't have any more babies at all. She said she would be sad and cry. I just hope she remembers all this pressure after a new baby comes and she is jealous. She needs to remember that she wanted it too!

Monday, January 22, 2007

We had drama at the cemetery yesterday. I had my two 7 year old nephews with me along with Gracie and Chris. They were playing on the large boulders by the fenceline of the cemetery. They came running over to Chris and I with flowers in their arms shouting "Look what we found!!" They had fake flowers that had blown up against the fence over time. There were loads of them. There aren't any graves up there in that area. They were so excited and ran around putting them onto graves that didn't have any flowers. It was cleaning the fenceline in addition to giving flowers to those who had none.

Chris and I were watching them the whole time. Others were watching them at first thinking that they were doing something they shouldn't be doing. But then realized what they were doing and that it was harmless. Well, one person didn't think so. He had been sitting in his car watching us. He came up and started yelling at us that the kids were stealing flowers from graves. We said that we had been watching them and they were not doing that. We told him that they were flowers that were up against the fence. He said that we didn't have any authority to take them and he was going to report us. Which we replied, "Go ahead." He kept yelling at us about it. We ignored him. Unfortunately the kids were right there and heard what he said. They thought they were doing something nice and didn't understand. Then they started to ask if they were in trouble or going to jail. We explained that the old man just didn't understand and he was crabby and they weren't in trouble.

Once we left, he was still sitting in his car. We went around the "block" to make sure that he wasn't getting out and going to Kevin's grave to do anything to it (like take his flowers away or his toys). It's sad, but it's not beyond some people to do something mean like that. But he didn't get out of his car so we left. I've been thinking about going today to make sure Kevin's grave is how we left it but they close at 5pm and I wouldn't be able to get there by then. It's the first snow there too. Gracie was a little concerned about it this morning and asked to make sure that Kevin's casket isn't covered with snow or if he's too cold. I reassured her that Kevin's special bed is perfectly clean and Kevin's body is protected. I also reminded her that only Kevin's body is there - not his spirit. Kevin is someplace warm and cozy right now.

She made me let him crawl through my legs last night as we went up the steps to bed. I forgot to tell you (I think)...she tattled on him a few weeks ago. She said he was on the kitchen table and made me tell him to get off. If she couldn't be on it - then he couldn't be on it - but he was. So I told him to get down. She said that I upset him and he left because I yelled at him (which I didn't). I explained to her that nobody is allowed on the kitchen table. He can use the chair next time. He hasn't done it again (that I'm aware of.)

Wednesday, January 17, 2007 6:03 AM

Sometimes I open this webpage and just sit and look closely at his little face. I can see a little wound on his neck from a recent surgery. I look at it and remember the texture of his hair and how soft his skin was.

I'm doing better. I haven't taken any sleeping medication for over 2 weeks. Those horrible images of Kevin's last moments aren't coming to me as soon as I close my eyes anymore. I have a picture of him by the bed and his little face is the last thing I see before I close my eyes. Of course, I still have my moments. Church was hard for me at times on Sunday. I had a hard time when I saw Mrs. Galzynski who helped with the program and sang at his funeral. Then I looked over and saw the center aisle in front of the altar. That bothered me because I remembered that little casket being there. (It's upsetting me now thinking about it.) Sometimes I just have the urge to get up and walk away or walk out of where I am. I've had that happen to me in meetings too. It comes so suddenly. It's a huge rush of emotions that makes me uncomfortable. I just want to get up, get out and go cry somewhere alone. But I don't do it. I sit there and get over it. I don't want to draw attention to myself by doing something like that. But I'm not sure that I will always be able to sit there and take it. And it's OK if I can't.

I made some progress with Kevin's rooms this weekend. His clothes are packed. Some were just put into the closet. His bed/crib toys are all packed. His bed is down. Pop took it apart last night for me. I asked him to put it in Kevin's room upstairs so it could be for guests. But, I told him to hold off. I think it would make me a little uncomfortable and sad because it's still Kevin's bed. So, I'm going to change it a little. I am going to paint it (it's a daybed). I think red or blue. It won't change the fact that it was Kevin's bed - but it will be a little different and I think that will make it a little easier for me. I'm not quite sure it will make it easier to bear - but it's worth a shot. I've packed up and gotten rid of a lot of Kevin's stuff. Baby steps as one person told me. Some things I just can't seem to put away yet....his little shoes, his baby Tad that he always has with him when he slept, his B's. In the room upstairs are plaster casts of his hands and feet. They're perfect imprints. You can see the detail of his little fingernails and itty bitty toes. They are so cute and tiny. I remembered how I would ask Kevin if he had stinky feet and he would always put one of his feet in my face on my nose for me to smell it. Then I would say, "Pee-ewww!" and he would giggle. He would do it over and over again. He was such a ham.

Tuesday, January 9, 2007

Chris and I spoke to Dr. Piccoli yesterday. He is a very nice guy and he totally understands our concerns. He said that since the truncating mutation of the gene was found in Kevin and NOT in Chris and me, then our chances of having another AGS child are really low. Not 0, but low. He said that there is a higher chance of me having a child with Downs Syndrome than having a child with AGS. He said the chances of AGS would be 1 in 100. Then he said more like 1 in 1,000. Those are much better odds than what I had read. I asked if we had another child with AGS, could it be as severe as Kevin's was. He sighed and said that Kevin was one of the worst cases of AGS and very rare. Kevin was in the top 5 percent of severe cases of AGS. I felt bad that it was our child to be so "rare". But I realized that for a child so "complex, rare and complicated" that he survived for over 2 years with this disease. That was a big accomplishment for Kev. I had sent a note to MK and Dr. Schwarz telling them the news and said that Kevin lived so long because of the love and care he received from his doctors, nurses and family. He had the best.

Anyways, Dr. Piccoli said that if we have another one, tests could be done while the baby was in the womb. He said that a fetal ECHO could be done to check the babies heart (which is the primary issue with AGS). I don't think I will get an amneo done. A sonogram would be fine. He mentioned that if the baby will be sick, it doesn't do any good to know ahead of time. I said that it did. It would be helpful to know if that baby is going to need to be taken out of your arms after it is born because it needs surgery. At least you are prepared for that if you knew ahead of time. I can't explain the feeling I had when they took Kevin away shortly after he was born. It makes me sick just to think about it.

We asked about Gracie needing to be tested because of her future children. He said that it is most likely that she does not have the gene either. But Chris and I would like to have her tested when she is a teenager. I couldn't bear to have my daughter go through what I did.

Chris and I were pleased after getting off the phone with Dr. Piccoli. We are grateful that he gave us his time. He said that we could go for genetic counseling, but after speaking to him, Chris and I don't feel it would do us any good. We will go ahead and try for another one....

By the way, little AJ who had his heart surgery almost 2 months ago is doing very well. His Mommy said that he is back to his old self again. He had his GI check up and things are fine. Melanie said that towards the end of AJ's GI appointment that Dr. Schwarz kept calling him Kevin. They do look a lot alike. I thought that was cute. It's nice to know that Kevin is still on Dr. Schwarz's mind. I'm know he is on the mind of a lot of people. I forgot to mention that we received a Christmas card from the 6th floor at JHH signed by all of Kevin's ladies. Dr. Spevak even signed it. That threw me off - but it was a nice note that he wrote. I hope he learned something from his Kevin experience. I think he did.

Take care everyone!

Monday, January 8, 2007 6:08 AM

I was flipping through channels the other day and caught the end of a "baby" show. It was one of those shows about births that are high risk. Gracie came in and was watching it too (and asking loads of questions.) Triplets were born, but one had some type of tumor on her belly that was the size of her head. They had said that they didn't think she would survive in the womb (but she did) or survive the birth (but she did). I had to keep watching to see what happened to her. She did end up passing away at 5 days old. Gracie kept asking me if she stayed alive. I told her that she didn't and that she was 5 days old when she died. She said that Kevin would play with her. In school the next day, Gracie drew a picture. I saw it when she came home. There was Mommy, Daddy, Kevin and Gracie. (I recognized Kevin because he had wings and a halo. And he is in all of her family pictures that she draws.) But there was another little person there. I asked who it was. It was that little baby that was 5 days old when she went to Heaven. Gracie was even talking about her last night. She isn't upset when she thinks of these things. Unfortunately, she is familiar.

We went to the cemetery yesterday and gave Kev a new stuffed teddy bear and another little bear that is holding a heart that we could stick in the ground. We also put fake flowers there. They look nice. The deer will be sadly disappointed when they come up to their normal snack spot to find that they can't eat them. On our way out of the cemetery, we stopped at the baby area. It was sad. Most of those little ones didn't make it past 1 day. It made me remember how lucky we are to have had Kevin for 2 years. Those parents never got to see their baby smile or play peek-a-boo. We have lots of happy memories of our Kev. We are lucky. I wish there could have been more though.

Chris and I have our conference call with Dr. Piccoli this afternoon. I hope it goes well. I think that we aren't going to hear what we want. I also fear that we will be told that we need more genetic counseling, which means more time to wait. I'm 35...I don't have a lot of time to wait. This weekend I thought about the possibility of not being able to have any more children. It put knots in my stomach. Gracie asked me on Friday evening for another baby. I told her that Daddy and I had to speak to the doctor first. I explained that the doctor might tell us that if we have another baby, that it would be sick and that would mean that we can't have anymore because we don't want a baby to be born sick like Kevin was. It's just too hard on a baby. She said that she would cry if we can't have anymore. But she also said that she understands that "we don't want another baby to be born and have to be sick like Kevin was. Babies don't like being sick." She totally gets it.

So, I will do what I can to make my day go by fast so I don't worry so much about the call this afternoon. I'll let you know what he says....

Thursday, January 4, 2007 6:28 AM

I had a few days off this week from the holiday and then being off for Pres. Ford's funeral. Yesterday I sucked it up and went into Kevin's room and started to pack up his clothes and blankets. I also took his large play items (exersaucer and swing) down to Gan and Pop's for storage in their attic. I had a little moment when I was shoving them into the van. I had a pretty major moment when I was clearing off his bed (which was still made from the last time he slept there.) His jammies were still sitting there. I picked them up and smelled them and started to cry. As I went through a laundry basket of clean blankies I came upone a "B". It was a used "B". I could see where Kevin had left spit on it and in the tape that held it together. I didn't have the heart to take it apart. His bed it now cleaned off. No ointments, diaper wipes, jammies or blankets are there. It looked like a bed that was being used for a little boy - now it doesn't. We will be taking the bed apart, but moving it upstairs to his other room. His dresser was also cleaned out so that can be moved upstairs. That was particularly difficult. Expecially when I came across his Redskins outfit that he wore ALL the time. It was hard to do - but even if I waited another year, it would still be hard to do. I needed to get it over with. Although I'm not finished. He still has stuff on top of his dresser (like his little sneakers and slippers.) I had to stop yesterday - I just had enough and couldn't do any more. I'll muster up strength and get it done soon. We need to break down his room and make it back in to a den. Kevin is gone and he still has 2 bedrooms in the house!

We did hear back from Dr. Piccoli. Here is his note:

Dear Mr. and Mrs. McLane,
We were very sorry to hear about Kevin, and offer our sympathies and best wishes.
I would be happy to talk with you both about future risks and future options for limiting risk, if you wish.
I will pull the records to verify the mutation analysis, and I am sort of assuming it is alright to have everyone on this email.
I am curious which source you used for the data you quote?
You are absolutely correct that there is a huge difference between a parent with no signs of the disease, and a parent who does not share the mutation of their child. That is exactly the point of extensive genetic analysis. Even so, there are some complicated scenarios, which is why we like people to have a formal genetic counseling session if they really want to understand the risks and how to limit them. We have some very good counselors up here, but no better or different than at
Hopkins.
I have attached three papers that may help you understand some of the issues, - including how important it is that we are able to identify a mutation in almost everyone with AGS, and that it can be caused by a mutation in either of two genes.
Please call my secretary Judy Sposato, and we can set up a time to chat. 215 590-1678.
Best wishes,
David Piccoli, and all the members of the Alagille Center at CHOP.

So, I have a conference call set up for me and Chris on Monday afternoon. I've printed off the papers he sent me. I'll look over those when I get a chance (not that I'll understand most of it.) It makes me a little nervous. I'll be honest, I was hoping that he would write back and say that since we don't carry the gene that we are safe to proceed with having more children. My heart sank a little bit when I didn't get the answer I wanted. But, it's not over. We'll see what he says and get the genetic counseling as he advised. I wonder how much that will cost. I would assume that the insurance company would rather pay for that rather than paying the bills for a sick child again. If it's meant to be, then it's meant to be. If we can't have anymore kids, then we just can't. We'll accept what we are given.

Friday, December 29, 2006 6:13 AM

Looking back over these last several days I realized that the day after Christmas seems to have been my worst. I guess I was kept busy most of the time on Christmas day. After Christmas, I was back to work and having everyone ask how my Christmas was with a pitiful look on their faces. Some didn't ask at all because they knew it was hard for me and they didn't need to ask. I started off the day saying that it was good. And it was. But I eventually just responded that it was difficult. I must have cried 30 times that day. It was just an awful day for me. I feel better now. But I'm still a bit sad.

Someone came into my office and saw pictures of my kids. She said, "Oh, your son is so cute. He looks yellow in the pictures." I said that he was sick with liver disease. She asked if he was better now. I said that he was and left it at that. He is better now. I have to keep reminding myself of that when I wish for him to be back in my arms again.

I was at the grocery the other day and a little boy was in line behind me and Gracie and he was driving his mom a little nuts. She was losing patience with him. So I tried to distract him. I asked him if Santa brought him presents. She butted in by saying that he did, but he didn't deserve them. I said that even though they have their moments, that each one of them is a blessing. She rolled her eyes at me. Then I said that I wished I had my son here with me to get on my nerves, but instead, I was putting a little toy truck on his grave on Christmas day. I had a stern tone to my voice when I said it. It was perfect timing because I had finished paying for my groceries and walked away. She didn't say a word. I didn't look back at her. But I'm sure that whatever that little boy did for the rest of that evening - he didn't get yelled at or spanked. I'm sure that his mother found the strength she needed to deal with him. I'm sure she quickly realized that he was a blessing.

Tuesday, December 26, 2006 6:12 AM

Christmas was harder than I thought it would be for both me and Chris. I still feel very heavy hearted and depressed. Our Christmas overall was good. We spent time with family and Santa treated Gracie good. She has been good knowing that he wouldn't bring her anything if she was bad....so now I tell her that if she is bad, he will come and get the presents from her. That should work for a little while - at least until it's time for the Easter Bunny.

Chris and I spent about 45 minutes at the cemetery yesterday. We stood there in the cold rain recalling memories of our son and crying together. The top corner of his headstone is sunk in so there was a deep pool of water there. It made it a little more depressing for me to see that. I told Chris that I really missed asking Kevin for kisses and having him press his little warm forehead to my lips for a kiss. Chris said that Kevin loved his sister and his Daddy, but his Mommy was always the one who could console him and make him at ease no matter what was going on. Just putting Kevin in my arms would relax him. That is also something I yearn for, just to hold him again. We started to talk about some things we would have done differently and what if's. But we stopped quickly. We can't change what is done. We cant' doubt our decisions. We did what we could for Kev. But as a grieving parent, you can't help but wonder about a lot of things. The cemetery was beautiful yesterday. It was quiet because of the cold and the rain. But it is decorated nicely from people leaving wreathes and pretty red flowers on the graves. Of course Kevin's grave stands out with the pretty big tree decorated with silver and red. We took him a little truck. It wasn't new, but it was one that he got last Christmas. I remember playing with it in the hospital last Christmas. He was on my lap with the food tray in front of us and he kept pushing it off for someone to pick it up for him. And of course someone was always there to do anything Kevin wanted.

Dr. Schwarz sent a short e-mail on Saturday. Here is part of it: "I did pass your question along to Dr. Piccoli - he's very good about answering his email so I'm sure we'll hear soon. I too was under the impression that if the AGS mutation were sporadic in the offspring that the subsequent births would not have an increased AGS risk but I may be wrong. Dr. Piccoli can set us straight."

Dr. Piccoli is the AGS researcher at CHOP who also did our genetic testing. Hopefully he will respond with something that will set my mind at ease. At least that will be one thing I can stop worrying about. I've got way too much going on in my head right now. It's hard to get up in the mornings. Partially because I'm not sleeping well at all and partially because of depression. Hopefully as the Christmas season gets further and further into our past, it will get easier again. But then again, it just means that another Christmas without Kevin is getting closer and closer.

Friday, December 22, 2006 6:13 AM

Christmas is getting closer, but I'm still not in the mood for it. I just feel like I'm going through the motions. Chris had a bad Kevin day yesterday. He has been doing well lately, but I think the holiday getting closer and holding back his emotions for so long finally took its toll. He called some people at JHH to wish them a happy holiday and tell them how much we appreciated their efforts with Kevin. I told him that I had been in touch with Mary Kay. You all remember Mary Kay...she is the GI nurse for JHH that works with Dr. Schwarz. Anyways, I had been reading the Alagille's webpage (parents of other AGS children post messages on that site when they need guidance, comfort or reassurance.) One woman had posted about her 16 year old daughter who wasn't doing very well. Then she mentioned her son who also had AGS. I searched through AGS information on the web about having multiple children with AGS. This is what I found:

Alagille's occurs approximately once in every 100,000 live births with equal incidence between girls and boys. For a couple who already have an affected child, the risk of a further child being affected are 1 in 30 if neither parent has any signs, and 1 in 10 if one of the parents has signs of the syndrome.

Well, that freaked me out. This isn't news to me. But Chris and I hadn't thought about it in a long time. I thought that since Chris and I didn't have the JAG1 gene, that our chances of having another AGS child were extremely slim. But after reading the above, I was confused. So, I sent a note to Mary Kay to see if she could get some answers for us. It says there is a 1 in 30 chance if neither parent has any signs of AGS. Does that mean that they have the gene, but have no signs? Or does that mean that they have so signs because they don't have the gene? I guess I'm so worried because Chris and I actually have the possibility of having more children now. I need the answer on this before anything happens. One in 30 are not odds that I like. We won't take the risk of 1 in 30. Mary Kay wrote back and stated that she also thought our chances of having other AGS kids were extremely low, but she would check with Dr. Schwarz and get back to us.

So, I've got a lot of things on my mind and they certainly aren't things to put me in the holiday spirit. Another thing that I've been thinking about as Christmas comes near is Jesus' mother, Mary. Gracie has been asking how old Jesus is. I told her that he was around Mommy's age when he died for us a long, long time ago. She talks about Jesus being in heaven with Kevin. But I think about the pain that Mary went through to watch her son suffer so brutally and be put to a slow death right in front of her eyes. Since I've gone through what I have, I think about her suffering as a mother. I hadn't really thought about that before Kevin. He has opened his mommy's and daddy's eyes to so many things. And we see things differently now that he's gone.

Chris, Gracie and I wish you all a wonderful Christmas. I know we are in your thoughts during this season. I will try my best to enjoy it. I promise. You all take care.

Saturday, December 16, 2006 8:18 AM

Chris and I went to Baltimore last night to meet some of Kevin's JHH nurses for dinner. We had a really good time and it was so great to see them again. Some we hadn't seen since the funeral and some we saw on July 4th. The drive up to Baltimore brought back some memories - but it was OK. The drive home was a little different. It just reminded us of the times we were heading back home after leaving Kevin at the hospital. I cried just a bit. Then it dawned on me - I have cried every day for the past 9 months. Most days I shed just a few tears and others I cry a lot and often. I miss him. So does his Daddy and sister. I guess it is getting easier. We are getting used to our new situation. It's just uncomfortable at times and doesn't feel right. People are starting in with the "are you better yet?" and "are you over this now?" I just say "Nope" or if I'm feeling feisty I ask them how quickly am I supposed to get over the pain of losing my son? What's the rule here? Nine months have passed so I should be OK now? I'm a lot better. At least I think so. I actually thought I was doing pretty good. The counselor at hospice contacted me about getting some additional help for myself. I haven't had time to get back in contact with her on that. I kinda felt like a grief failure. I thought I was doing well, but then someone tells me that they think I need more assistance. Maybe I do. I didn't think I did. I have a hard time talking about Kevin without getting a little teary eyed. But I can usually do it without getting upset. I like to talk about him and his quirks and things he did that made me happy. Everyone wants to talk about their children. Just because Kevin is gone doesn't mean that I don't want to. He's still my child. It's just that in talking about those things it makes me sad because he isn't here anymore. So, I have cried every day for the past 9 months. I think I will probably cry every day for the rest of my life. And you know what? I think that's OK. I think it's human. I think that I can cry for my child and that it is part of healing. I am healing.

Monday, December 11, 2006 6:33 AM

We went to the cemetery early this week. We went on Saturday so we could check to see if his little Christmas tree was there. That way, if it wasn't, we would be able to go to the office to say something about it. They are closed on Sundays. It was there. We were happy about that. We went back on Sunday morning. I went up to Kevin's grave and asked if he was suprised to see us since we were there two days in a row. I know, I'm silly. We had purchased some decorations for the big tree that is planted by his grave on Saturday afternoon. We wrapped the tree trunk in red and silver garland and hung gold bell ornaments in the tree. They should ring when the wind blows. We also hung some of the ornaments on his little tree that we had ordered. It looks very nice. We walked back to the car and looked over at it and could see the tree sparkling in the sun and the gold ornaments shining. It was very nice. I hope Kevin likes it. It is the one decoration that I didn't mind putting up this year.

We went out to dinner last night and Gracie stayed with Judy for a few hours. When I picked her up, Judy told me that they had been playing on the trampoline. She said that she was grabbing Gracie's legs as she was jumping and Gracie told her to catch Kevin's legs too. She said that he was jumping also. But then she told Judy that she missed and Kevin had flown away. I asked Gracie about that at bedtime. I asked if she had fun on the trampoline. Then I asked if it was just her jumping or did Judy jump with her. She said that Judy didn't jump because she had a tummy ache, but Kevy was jumping with her. She said that he wanted Judy to catch him, but she couldn't. I like to think that he was there playing with her.

I've got to run. You all take care!! By the way, AJ is back from CA and is doing really well. He is happy to be home and his surgery was a complete success. We are very happy for AJ and his family.

Tuesday, December 5, 2006

The tree finally got decorated. It was bare for 2 days. Actually, it had 1 single ornament on it - an angel. Gracie decorated the tree and was very excited to do so. I wasn't really in to it much. But I enjoyed watching her do it. I didn't realize how many ornaments Kevin and Gracie had. There are 3 with her picture in them. I would like to do the same for Kevin. At least one.

She was watching Fantasia the other night while I was taking a bath. (Yes, I got a bath alone!! But not without a lot of whining and promises for future tubbies together.) Anyways, there is one part of that movie that I don't like...it's scary and gross. It is the dinasour segment. They fight, eat each other and end up starving to death. I heard her talking though the entire segment - but I don't know what she was saying. After I got out I asked her and she said she was watching it with Kevin. She said that he liked that part. I guess because he's a boy. She didn't say anything more about it. She was very non chalant about it - like he's there all the time and I'm just not aware of it.

I've been watching a new show about a medium named Lisa Williams. She is VERY good. I cry just about every time I watch it. I know Kevin is around at times. Normally in the evenings for me. But I really enjoy hearing other stories and having my feelings validated. I know he doesn't want to see his Mommy hurting. But there just isn't anything I can do about it right now. I do hurt.

Friday, December 1, 2006 6:31 AM

I still have the ho-hums about Christmas. We still haven't decorated and I still won't listen to any Christmas music. Gracie said that she wants the tree put up this weekend. Daddy can do that. Maybe I'll watch. She has also been speaking of another brother or sister a lot lately. At least once a day. But she said that she wants a healthy one this time. I told her that we will be happy with whatever we get. Then she cried. She asked why God gave us a sick baby. I told her that He didn't. He gave us a special baby. I was off sick the other day. It seems that everything on TV during the weekday is baby shows....A Baby Story, Bringing Home Baby, Adoption Stories. I must say, I did watch one episode of Bringing Home Baby. It is about the first 36 hours after the parents bring their new baby home. Yea, that's what you need, a camera crew in your home for 36 hours while you are stressing out and sleep deprived taking care of your newborn. These poor people were so tired. I remember saying to myself that taking care of a newborn with no health issues is a piece of cake after taking care of Kev. If I could take care of him - I can take care of a healthy baby - no problem. That has been a major concern for me. Can I do it? After watching them stress over little things, I realized that it should be a walk in the park for me. I just won't know what to feed it or when or how much. I've forgotten how to care for a healthy baby. That's OK, Nina will tell me what, when and how much. So, I've talked myself into it. We are going to try for another baby. (So why do I feel sick to my stomach after saying that?) I think that once the time does come, we will be starting a new chapter in our lives and it will be time to stop journaling. I think I will do it for just a little while at first because I KNOW I'm going to be full of different emotions once it happens (if it does happen.) I'm almost 35 so I'm not even sure anything will happen. So, that's it for now...wish me luck!

(Have you all noticed how many times this page has been hit?? More than 100,000 times!! Wow!)

You all take care and God bless.

Monday, November 27, 2006 6:12 AM

Little AJ's surgery went well and he is doing just fine. He was extubated yesterday and is starting to bounce back. Hopefully he will be home soon.

I'm still feeling much the same as I was when I wrote last. Maybe even a little worse. I seem to be missing Kevin more and more. I'm not sleeping much. I went downstairs around 11:30pm one night to grab his video. I took it up into Gracie's room and tried to watch it - but it wouldn't work. I tried several times. Then I took it into the DVD player in my room to see if it would work there. I was in a bit of a panic thinking that it was broken and not viewable. But it worked in that player. I couldn't watch it in there...Chris was watching TV and I kinda wanted to be alone when I watched it. He said that I didn't need to be watching it (because I was upset.) He doesn't understand. I needed to watch it. I knew it would make me feel better. I needed to see Kevin alive - not just in pictures. So, I took it back into Gracie's room and tried to get it to work again. It wouldn't. I kept pushing buttons and ejecting it and putting it back in again. It was pitiful. I just stood there in front of the TV with tears streaming down my face and dripping from under my chin. I couldn't get it to work and I wanted it to work so badly. Then, I just stopped. I stopped crying and turned the TV off and went to bed. I watched it yesterday morning. I cried of course - but I had plenty of smiles on my face. I explained to Chris at the cemetery that I watch it because I need to hear Kevin's voice. I hadn't heard it in so long and my memories aren't quite as clear as they were. That's something that is also bothering me....I'm forgetting a lot. Maybe it's just because I'm so tired. I cried at the cemetery more this time also. A parent shouldn't be standing over their child's grave. I told Chris that it still doesn't seem real sometimes. I stand there and look around for a while. Then I stop and look down at Kevy's little face on that marker and I snap back into reality. And then it hurts a little more.

Tuesday, November 21, 2006 6:38 AM

First of all, I want to mention that little AJ (AGS) is in CA preparing for heart surgery. Please keep him and his family in your prayers. He's gotten bigger which makes things a little easier for the surgeons. These kids are tough. Good luck AJ. (Honestly, it's making my stomach a bit upset. I don't have Kevin to worry about with this stuff anymore - but it brings back memories of when I did. So, now I'm worrying for AJ.) Here's his site if you want to check on him:

http://www2.caringbridge.org/md/aj

So, Christmas music is starting to be played on the radio. The first Christmas song that came on freaked me out a bit. I wasn't ready for it. It got me a little angry come to think of it. I said, "Are you kidding me??" and turned the station. It was too early. But, now that I think about it....it was just the fact that it reminded me of Christmas coming up so quickly and I don't want it to come. Not without Kev. Our last Christmas with him was in the hospital - but it was still Christmas. It was just away from home. I see things in catalogs and in stores that he would have liked. Toys, clothes, new Baby Einstein videos. It's a little harder than I thought it would be. Mentally I mean. I'm pretty unmotivated. I don't even want to be here for Christmas. I feel like going away. It isn't going to solve my problems, but I think it would help me not hurt as bad. Chris is having the same problems. We don't want to decorate or even put up a tree. He said that we have to do it for Gracie. I know, I know...but I just don't want to do it. I think Chris may have to take charge of that task. I just remembered - Kevin has his own ornaments. Those will go on the tree. I'm just in a slump. I hope this will be a little easier to bear as the years go by. But this first one sucks so far. I hope my attitude improves. I'll try.

Tuesday, November 14, 2006 6:07 AM

Gracie said, "God gave us a beautiful day today" for Kevin's birthday. She was absolutely right. It was a gorgeous day on Saturday. Our friends and family gathered at his grave at 11am. It was the first time many had seen his beautiful marker with his little face smiling up at you. We had so many notes that I didn't have enough balloons! I had 50 balloons. So we tied a couple of notes on some of them. We didn't read the notes aloud. They were for Kevin. So, we all sang Happy Birthday to Kevin and then we released our balloons at once. It was so pretty. They gently rose in the air scattered over a large area. There were so many! I noticed other people in the cemetery stopping what they were doing to watch the balloons float to heaven. I was so busy watching the balloons that I forgot about the camera! We did get some pictures, but it was after they had floated high in the sky. I watched until I couldn't see them anymore. Then we went back to the house for a little celebration. Everything about the day was a really nice. It was a good day. I'm sure Kevin loved hearing all of us talking about him and how special he was. And I know he enjoyed the balloons and special messages.

I was a extra emotional that day. But keeping myself busy helped. Since it has passed, I'm back to my new normal of sleepless nights. I lay in bed, in the quiet, and listen for him. I want to hear him cry down in his room below me. I want to hear anything that I used to hear from him at night. A cough. A sneeze. A raspberry. But I don't. I won't. He's gone.

I found a bereaved parents group for Chris and me (Compassionate Friends). They meet the first Tuesday of every month out in Potomac. I think we will go. I spoke to the woman who runs the chapter and told her that we were in counseling already. She said, "Oh...you don't belong there." She told me that she and her husband had gone to one session of the same type of counseling and they didn't go back. We need to be around other grieving parents. They will understand and relate to what we are going through. They can't relate to us at the current meetings. I was told that Chris and I are every parents nightmare. People are frightened because we remind them of what could be. If it happened to us, it could happen to them. We have 2 more sessions at hospice. Gracie will be very upset when she finds out that the sessions have ended and she won't be going anymore. We'll find something else for her.

I will post pictures of Kevin's birthday as soon as I can. Our love to you all...

Saturday, November 11, 2006 9:37 AM

A Birthday In Heaven

Written by Kris Smith


I heard you crying yesterday
And felt your heart-sent love
So I’m sending you this message
Now, from Heaven up above.

You’re wondering if I’ll celebrate
My birthday (way up here)
I know you’re missing me today
I feel your essence near.

God planned a special day for me
He told me with a wink
He’d ordered me a special cake
(It’s Angel food, I think)

I’m getting lots of hugs from God
He’s really good at that
And every time that I walk by
He gives my head a pat


Balloons will fill the streets for me
They float up through the clouds
And we have lots of clowns up here
That make us laugh out loud

There is a birthday carousel
Jeweled horses ride the wind
With music playing oh so sweet…
The magic never ends

I’ve made so many friends, you see
We laugh and play and sing
We ride our bikes and play jump rope
And sleep in Angel’s wings

We’ll have our cake and ice cream
And open gifts, surprise!
But we don’t blow out our candles here
Instead, they light the skies



We are getting ready to leave for the cemetery. Gracie helped bake a cake for Kevin's birthday. She had me put 3 candles on it. I wasn't going to do that. But she said it is his birthday and it's his birthday cake so he needed candles. She said that she will blow them out for him. Yesterday was easy because I was so busy. Today isn't so easy. I cry off and on. I was cutting out some pictures that Nina had made into smaller ones for us to give out today. I had to keep stopping because I was crying looking at his smiling little face. Today is so special. And it is going to be celebrated in such a wonderful way with friends and family. We celebrate today the life of our son. It's a happy day. A happy birthday.

Thursday, November 9, 2006 6:15 AM

Well, we went back to counseling last night. It went OK I guess. The counselor started off the session addressing my concerns. The woman who upset me last time did acknowledge that she has a hard time seeing Chris and I there together as a couple since her husband is gone. And to hear us talk about Kevin's medical issues. I don't remember talking about Kevin's medical issues - but maybe Chris touched on it and I just don't remember. She also fessed up that she is so focused on her own pain right now that she isn't open to other people's losses. I don't feel much better about it. When it comes to others pain in this group, I think Chris and I need to keep our mouths shut. They also had an exercise in which you had a big rock which symbolized your burden and you had to put it into a basket and let the guilt/burden go. My burden is guilt from not spending every moment with Kevin. It's time that I can't get back. I wish it was as easy as putting that into the basket. But I can't. I wish I didn't have 50 more years to live with it. I think eventually it won't bother me as much as it does now. But it won't ever go away.

I am including the ending from the last entry with the address of the cemetery. We are meeting at 11am on 11/11. We hope to see you there.

Here is the address to the cemetery: 13801 Georgia Avenue, Silver Spring, MD. Please use Mapquest to obtain directions. Once you are in the cemetery, you turn right as soon as you pass though the gates. Then you go to the end and the road bends to the left. Take your 2nd right on to St. Jude's. Follow that down and to the left. You will see our blue minivan there on the right. Kevin is in section 15-7. Don't forget to bring your messages with you!! I will have a hole punch with me so we can attach it to the balloon strings. If you can't make it, you can send me your birthday wish and we will gladly send it for you!!

Tuesday, November 7, 2006 6:11 AM CST

I had a dream about Kevy last night. It seemed so real. I don't remember where I was, but I sat down on a couch and Chris brought Kevin over to me and placed him in my arms. He still had the feeding tube and he was hooked up to him feeding pump. I cradled him with him head on my right arm. He looked at me and gave that smile and then gave that giggle with his eyes closed. I leaned down and touched my nose to his nose and then to his forehead. I could feel his warmth. He reached up and touched my face. I could smell him. Then it was over - I woke up. I couldn't get back to sleep. Then I started to cry.

I had a different one on Saturday night. There is a medium named John Edward. He says he can talk to dead people. Well, I dreamt that Chris and I had a private session with him at 3pm one day. We were sitting in his office waiting for him and when he walked in, he looked at us and said, "It's you! Thank God!". Chris and I were puzzled. He then said, "I have had this little boy following me around ALL day giving me raspberries. Now I see that he belongs to you two." I told Chris about my dream while we were sitting at Kevin's grave on Sunday morning. Did you all know that deer ate pumpkins? We didn't until we went and found that his little pumpkin was now just a stem. We thought it was pretty funny. I also bought a bunch of little stuffed animals for Kev. We keep leaving them there tied to his vase, but the groundskeepers keep removing them. They are small - like beanie babies. I got them for $1 each and I have a stash of them. So we can keep replacing them every Sunday. Oh...I just had a mental picture of me whooping the groundskeepers butt after he tried to remove the toy from Kevin's grave. How in the hell did I get so feisty??

Here is the address to the cemetery: 13801 Georgia Avenue, Silver Spring, MD. Please use Mapquest to obtain directions. Once you are in the cemetery, you turn right as soon as you pass though the gates. Then you go to the end and the road bends to the left. Take your 2nd right on to St. Jude's. Follow that down and to the left. You will see our blue minivan there on the right. Kevin is in section 15-7. Don't forget to bring your messages with you!! I will have a hole punch with me so we can attach it to the balloon strings. If you can't make it, you can send me your birthday wish and we will gladly send it for you!!

You all take care. God bless.

Friday, November 3, 2006 6:34 AM

I was a bit perturbed yesterday. I'm over it. Nope...I just lied. I'm not over it. I am going to contact the counselor for the session and speak to her about it. I think something needs to be said about it since it bothers me so much.

We went to mass last night at St. Mary's. They had a mass of rememberance for those that died this year. They read the names from the book of life. Mom and Dad had written Kevin's name in that book on the day of his funeral. I recognized several names on the list. They were adults. Mostly older adults. I wondered if Kevin was the only child on that list. We got to light candles and sit in the dark church lit by only the light of the candles. Gracie did well with hers. I kept hoping that she wouldn't catch the woman's hair on fire that was sitting in front of us. Gracie held a picture of Kevin through most of the mass. It was very difficult for me and Chris. I cried - a lot. Fr. Mark who said the mass for Kevin's funeral was there participating. It was nice to see him up there on the altar. But he was blurry to me most of the time because of all my tears. Fr. John spoke about how happy our loved ones are in heaven and they are waiting for us to join them one day. I think about seeing my son again one day and holding him close. I look forward to it. Until then, I just need to keep on keeping on as Chris says. One minute at a time. One step at a time. Each step will take me closer to my son.

You all take care and have a wonderful weekend. God bless.
Don't forget to send me your birthday messages for Kev. I've got several to send for people that can't attend on Saturday. Just e-mail them to me and I'll send them for you.

Thursday, November 2, 2006 6:33 AM

Gracie was very excited about going back to the counseling at hospice last night. She was especially excited because she got to take pictures of Kevin with her to share. She had a good time and came out happy and babbling about her brother. I, on the other hand, wasn't too pleased with the session. Again, things are confidential from these sessions but I left a bit angry last night. I feel like Chris and I don't belong there. We are the only ones who have lost a child in this session. We were made to feel like we can't talk or give our advice because we haven't had the same kind of loss as the others. Chris was interrupted and it was actually pointed out to us that our loss is different and he pretty much doesn't have the right to say anything on that subject. I do have my husband to hopefully grow old with, but you get to watch your children grow up and get married, have children, experience life. We are in this group because there are no groups for us to join of parents that have lost their children. We have different losses, but we have some of the same feelings. I don't like going into my home knowing that my son will not be in there waiting for me with his arms open to hug me. Holidays will never be the same because he isn't there to share them with. They are upset because their future is gone - well so is mine. I don't appreciate someone insinuating that my loss isn't as important or destructive as theirs. Their children won't have a parent, Gracie will not have a brother - so does that make it less important? Less traumatic? She's only 4. Yes, she is and she speaks of her brother daily. She WILL remember her brother and his loss in her life because we are keeping his memory alive. We don't force Kevin on her - she wants to talk about him and she is always the one to bring him up. Kevin was also sick his entire 2 years and we were told he wasn't going to live - so is that supposed to make it easier on us? I am disappointed in the counseling at this moment. I hope to get over my unhappiness with the situation and can go back. We will go for Gracie. We are all there for our kids. But at this point, I am not inclined to participate by sharing my feelings. I will stick with it and see how it goes next week.

Tuesday, October 31, 2006 6:19 AM

Happy Halloween everyone! This is Gracie's first year that she isn't a princess...she's a witch this year. It's just Halloween, but I've been thinking of Kevin a lot more. He was home for Halloween last year, but the year before that he was recouping from heart surgery. That was the time that he went in to cardiac arrest. That was also the first surgery he had after they had told us there was nothing they could do for him. He grew and grew and his heart changed inside of his little body and they did surgery. I guess it will always be like this...little things (and big things) will remind us of Kevin and his life.

I ran out of sleeping pills the other day. So I just stayed awake watching TV until I couldn't keep my eyes open anymore. I actually slept! But, only for about 5 hours and then I woke up crying. I did that two days and then bought some more medicine. They say that tears heal...I've cried a damn river so far - I should be feeling much better by now. I saw someone in the grocery that I knew, but not really well. I was in line behind them. I remember thinking "please don't ask me about my son." I thought it so hard I'm surprised that those words didn't shoot out of my mouth. I just couldn't take it that day. I had been crying in the car and had just pulled myself together. An Elvis song came on...the one I always sang to Kev..."My Way". So many lines in that song remind me of Kevin's strength and persistence. One line struck me specially though..."regrets, I've had a few. Too few to mention." That made me think of the decisions Chris and I made with Kevin. We made decisions that some people didn't agree with. Some doctors didn't even agree with us. But they were good decisions. You make those decisions knowing that your child is going to have to endure some pain. But it is for your child's benefit. You want your child to have a life. A chance. And when the time came for the most important decision ever, we made that too, as painful as it was. The only regrets that I have are not being able to spend 24 hours a day with Kev to be able to catch every little thing that happened. To catch mistakes before they were made. The other is not speaking up early on in his life. Chris and I were still learning. But, I got over that. It probably got to the point where the docs wanted me to shut up. Actually, I know it did. I had to argue - it kept them on their toes. If we felt that it wasn't going to benefit our son - it wasn't going to happen. I remember a doctor calling us late one night telling us that she needed to get blood from Kevin and she needed to do an arterial stick. (That hurts.) I told her that she only had 2 tries. She said, "OK." I firmly said, "I am going to check that boy for bandaids tomorrow and if I find out that you stuck him more than 2 times, I am going to find you." Hey, it got my message across. You wouldn't believe the things they would do if they knew the parents weren't there. They push the limits, and push the kids. They forget about the child at times and think about the science. After I got off the phone with her, I spoke to the nurse to have her watch and make sure what I asked was adhered to. I could hear the doctor in the back speaking to her colleagues saying that they only had two tries and that was it. I remember that they didn't get it in two tries and they had to stop. But they stopped. The nurse even called me to let me know it was over. I think it was Megan. I remember what room and bed he was in. I tried to be there for all of his painful procedures. But sometimes they needed blood at funky hours and we just couldn't be there. Some parents always stepped out because they couldn't bear to see their children suffer. I didn't. I stayed with him and talked to him and hugged his chest. I know I would want someone there for a scary, painful moment. I think it made it a little better for him to have Mommy or Daddy there. Gosh, he was so strong. So brave.

Well, I'm finished rambling. You all take care and have a safe and happy Halloween.

Thursday, October 26, 2006 6:19 AM

Chris was looking forward to the counseling session last night. I honestly wasn't. I knew it would be emotional for me...and it was. The counselor said that it will get easier as we go on. I sure hope so. Gracie didn't have too much to say about her session, but she said that she did enjoy herself and she wants to go back. She has to take a picture of her loved one with her next week. One thing that the counselor said helps is to journal. I explained that it has been a huge help to me. I get out things that I don't feel I can say out loud. But then again, there are things that I now say out loud when I would have never said them before. I can be a bit frank these days. Oh well, I think I've earned it.

We cannot talk about anything that goes on in our counseling sessions because of privacy for the other bereaved people. But there is one thing I want to share. After Chris had told his story about Kevin and his death, one person (a nurse) explained to us that even though Kevin was unresponsive, that all of the other senses are heightened at that time. Hearing, smelling, etc. So he heard his mommy and daddy talking to him when we was passing. I wanted to always believe that - but I just wasn't sure. Not that she's an expert - but to hear it from someone else is reassuring.

We also received something in the mail from Gate of Heaven cemetery. It is the offer to purchase a Christmas wreath or tree for his gravesite. We picked the tree. It has little Christmas presents attached to it. It is $50 and they will place it there on December 1st and it will stay until February 1st. I look at it as our Christmas present to Kevy. So I will go sometime today or tomorrow to get that ordered for him. Chris mentioned last night how the holidays didn't feel as special because Kevin normally wasn't home for them....they won't feel special now either since he's gone. Hopefully we will be able to feel the full joy of Christmas as the years go by. It's going to be hard enough just getting through his birthday...

You all take care.

Wednesday, October 25, 2006 6:28 AM CDT

Chris had a bad "Kevin Day" yesterday. At least I have the ability to run off to the cemetery when I have a bad day and need to be close to Kev. But Chris can't do that. He misses him so much. He also misses the friendship he had with the JHH nurses. We spoke about times that Kevin was in the ER and how, eventually, it would take no time at all before Kevin was in a bed up on 6. They accomodated our son wonderfully. Sometimes we think that he had special treatment - actually, we know he did. A special kid deserves special treatment right? And he definitely was special.

I was watching TV late last night and the phone on the show I was watching rang. It sounded like our phone. I actually jumped and sat up in the bed. I had a sudden sick feeling in my stomach because it made me remember those late night phone calls we would sometimes get from the hospital. I immediately wondered what was wrong with him. But again, it only takes a second and I realize that he's gone and they aren't calling about him. I should be thankful in a way that we are no longer getting those calls...but it's hard to be thankful for that because it means that my Kevy is gone. Chris was mentioning last night about how well the nurses took care of him when he was in the hospital. He felt good about it. I felt guilty. I hated leaving Kevin. Hated it. He was a baby and he didn't understand. I don't care if I was leaving him in God's actual hands....I didn't want to leave him. I have problems with that guilt sometimes. There are regrets that I will need to get over somehow. Regrets that also cause my frustration and anger. I heard a bereaved father say last night that it took him a long time to be better instead of bitter.

So, we go to our first counseling session with hospice tonight. Chris and I spoke to Gracie last night and explained that someone was going to talk to her about her feelings and her brother. We asked what she would tell someone that didn't know her brother. She said that she misses his smile and his "raspberries". I asked if she could explain what happened to her brother - what was wrong with him. She said that he had to have a tube in his nose to drink his milk. She also said he had a broken heart and it couldn't be fixed. Then she said that his heart isn't broken anymore since he's in heaven. "You don't get sick in heaven" she said. I will let you all know how our first session goes.

I wanted to share a poem that a friend sent to me:

It's so very hard to understand
why one so small is taken,
leaving a Mom and Dad behind
with hearts so badly aching.

There are so many things in life
that no one really understands.
But the child you hold in your heart,
God now holds in His hands.

Cared for and nurtured by the Father,
he will grow and mature in His love,
while angels guide and protect him
in his Heavenly home up above.

They will tell him he was, oh, so special
to you both, in every way ~
as they spend countless hours preparing
for your reunion One Grand Day!

They will take him to the edges of Heaven
and let him look, often, down below
to see the Mom and Dad down here
that he didn't get much time to know.

So as you gaze up into the sky,
know he's now in a Glorious place,
and maybe he's looking back to you ~
searching for a smile upon your face.

For I'm certain that in his little heart
it grieves him to see you so sad,
for he knows he had the very best ~
The world's greatest Mom and Dad!

Ferna Lary Mills


You all take care and have a wonderful day. God bless.

Tuesday, October 24, 2006 6:29 AM

We went away for a few days. It was a nice break. I gave a goat a neck massage this weekend. Yes, that you read that right. While we were away, I caught myself several times looking at little boys that are Kevin's age. And I wondered if I will do that for the rest of my life. Probably. I will look at 2-3 year old boys and think of him and I will look at older boys as the years go by thinking about Kevin being that age. You know...the "he would have been" age. But he is always going to be 2. Gracie has been asking about that since his birthday is coming up. Will he be 3? No, he would have been 3, but he will always be 2. She got angry at me the other night when she was going to bed. Then she said, "You are making me think of you and I want to think about Kevin!" She does miss him. She still talks about him all the time. Sometimes she speaks of him as if he was still with us. I don't say anything about it. Because she knows he isn't. We start our "therapy" tomorrow evening. Why am I nervous? I really hope Gracie gets something out of this. I hope Chris and I do also. I don't understand how it will help me - but I will keep an open mind. I don't want to make people feel bad about our loss. And I don't want to feel bad about their losses. I already cry myself to sleep almost every damn night - I hope this doesn't make it worse. I'm pretty tired. I guess it's a little bit of mental exhaustion along with the physical.

I had more photos of Kevin made from that sitting we had done in May 2005. I went and picked them up a little while ago. Sue, the photographer, helped me out immensely with the total which is a huge help. She also made us a gift. It was a book. A Kevin book. Oh gosh, I'm gonna tear up just thinking about it. It's beautiful. It has all of our favorite Kevin pictures in it that she had taken. You all can see it when you come over after Kevin's birthday balloon's are released. Speaking of...I have heard from a few people about attending his birthday celebration. This is the one and only time that we are going to do this. It is first birthday away from us and I want it to be special. I need to know who will be coming so I can make sure I get enough balloons. We are going to meet at the Gate of Heaven cemetery on November 11th at 11am. (That reminds me...when we got Kevin's roses on Sunday morning, we also got him a little pumpkin for his grave. The total was $11.11. I thought it was interesting.) I need you to bring your birthday wishes on a piece of paper and we will attach them to the balloons and send them up to him. (This is different from the other thing I asked for. I want you to send me something letting me know how Kevin touched you. That is going to go into his book when I get the journal printed. But I don't need that just yet.) If you can't make it and would like to send me a note to send to him, just call me or send me an e-mail at km318x@nih.gov. We would like to have everyone over to our house for lunch afterwards. (I just remembered that I still have his "happy birthday" banner hanging in the kitchen from last year. But that's nothing...I have a Christmas decoration that's been up for almost 5 years!) Please send me a note or give me a call if you can make it on Saturday, November 11th. I will type up directions and post them as we get closer. We hope to see you there!

Monday, October 16, 2006 6:21 AM

Mom and I were out the other day and a funeral procession went by. They didn't have a motorcade like Kevin did so they had to beep as they ran the red lights. I was very disturbed by the people who tried to cut them off or beeped their horns in frustration because they were causing them to miss their green light. It was very obvious that it was a funeral procession. People were so impatient and rude. I wonder how they would like it if someone did that to them as they were taking their loved one to their resting place. I'm very thankful that Kevin's wasn't like that. (Momma may have had to hurt someone.) Mom said that Kevin's was amazing. I agree. It was truly amazing - at least the parts I remember. I don't remember too much about getting to the cemetery. I remember some cops and how people pulled over as we went by.

We also discussed some of the things that people have said to us since Kevin died. She told me that someone said to her that she must be relieved now that he has passed. I'm glad she didn't say that to me. I had someone in my office and he was looking at Kevin's pictures. He was quiet. I just knew he was going to say something stupid. I believe that he was wondering whether or not to even say anything because of his hesitation. Then he said it. He said that it was a shame that Kevin didn't die sooner. Is Oh boy...I kept my calm and told him that Kevin's life was not full of pain. And as he could see, Kevin was smiling in all of those pictures. I explained how someone reminded me that Kevin's pain was fleeting. I thought about that when I was getting my tattoo and I was thinking about Kevin. The pain stopped eventually. It wasn't constant. Chris and I did what we could for our son to keep him comfortable. I hate the fact that there were times when he was in pain and uncomfortable. But there isn't anything I can do about that now. I wouldn't have done it differently. The decisions we made, we would still make if we had to do it all again. Kevin was a survivor. Chris and I are so grateful for the time we had with Kevin. Because of our persistance and Kevin's stength and willingness to live - we had over 2 years with our son. He wasn't supposed to make it to his 1st birthday. I am not relieved that my son has passed. I wish that he was still here. I wish that I was still tired as hell from taking care of him. I would do that every day for the rest of my life.

I was watching a TV show on PBS last night. It was about hospital care. I got frustrated from watching it. An older woman was admitted and she had been on pain medication every 6 hours for the last 6 months. Her doctor wrote orders for that. Then she was off the next day. When she came back, the woman wasn't doing very well. The doctor found out that they hadn't given her any of her pain medication. Not even 1 pill in over 24 hours. The doctor was pretty upset and the woman felt better after she got her medication. They went on to say how tens of thousands of mistakes happen like that in hospitals every year. Some not as major as others. Mistakes happened with Kevin. He was a hard kid to take care of. I think that Chris and I caught some of those mistakes. No, we caught a lot of them. Many things were caught before they made a mistake with Kevin. Kevin's JHH nurses also caught some things. But they were busy. They couldn't catch everything. That is why I am thankful that Chris and I were able to be there with Kevin. We were on top of things. I kick myself in the butt for the times I wasn't able to be there for him. But again, there isn't anything I can do about that now. It's just hard to remember that. We did what we could. We were learning along the way ourselves. And we learned from our mistakes. I hope the hospital staff all learned from him also. I think they did.

You all take care and have a blessed day.

Wednesday, October 11, 2006 6:03 AM

Chris and I were standing at Kevin's grave on Sunday and just couldn't believe that it's been 7 months since we lost our little boy. It seems like forever since I've held him in my arms. But it also seems like yesterday when I was holding him in my arms with tears streaming down my face as I watched him take his last breaths.

I'm messed up. I haven't been having good days - they've all sucked emotionally. If I wasn't crying, I was angry or depressed. Chris noticed that I just hadn't been myself. It seemed to have lasted longer than usual. Then it finally dawned on me...I'm suffering from depression. I felt slow and sluggish. I didn't want to do anything or go anywhere. I thought about Kevin constantly and it was so hard to remember good things and not bad things. The sleeping pills aren't really working for me anymore. But I can't go to sleep without them. I just have way too much running through my mind. After I finally do get to sleep, it's not for long and I wake up in the middle of the night. But sometimes I just cry so hard that it wears me out. I would go to sleep at night with a soggy tissue in my hand and would wake up with it still balled up in my fist. But then I would just start crying again. Once I noticed how I was acting, I kind of snapped myself out of it. Does that mean that I'm still depressed? I guess so. But it's not as bad. I guess I just have to keep taking it one day at a time. I am not interested in taking pills. I can't remember to take the damn things anyways. People can get through these types of problems without mood altering medications. I can tough it out - I think...

I got Kevin's name tattooed on my inner wrist this weekend. It also has a cross under his name. It is my first (and last) tattoo. It hurt like HELL. Worse than labor pains! But, while I was getting it done, I remembered the pain that Kevin endured and I got through it. I almost cried. Not because of the pain, but because I was thinking about what Kevin went through. After it was finished and the pain stopped, I remembered that Kevin's pain was also fleeting and I felt a little bit better. I've been wanting it for a while now and I'm glad I got it done. I look at it and it gives me a little boost of strength. He was my tough little guy. I just now recalled the JHH PICU doctor who told us that Kevin wasn't going to make in back in December and then was standing over him the day before he was going to be sent down to the 6th floor...he shook his head and said, "He is the toughest kid I've ever met" and then he walked away. I remember thinking, "Yeah shithead...no need to say you're sorry for telling us he was going to die a few days ago. Or that you are happy that it has turned out this way." But you know what? That's OK. I know that Kevin made an impression on that doctor and I know it will stay with him forever. The next time that doctor comes across a hopeless situation, he will remember my son and that impossible things are possible. I'm extremely proud of the impact my son had on people. But unfortunately, it doesn't make my pain any easier...

Tuesday, October 3, 2006 6:15 AM

We had a pretty full weekend. Chris had his company picnic on Saturday and Gracie had a blast. Mommy had her issues. Kevin was with us at the last picnic. I even remember what he was wearing. (I wonder how long it will take before I start forgetting little details like that.) Well, I only cried a few times. Mostly alone - but once in front of someone. I don't like doing that. Actually, I hate it. I feel weak. I know I shouldn't feel that way - but I do. Then of course - the person I've cried in front of feels like shit for making me cry. Honestly, it doesn't take much. I've been pretty weepy the last week or so. I cry several times a day. Usually it's just for a minute or two. I'm not sleeping well, even with the sleeping pills. I just have a lot on my mind. Mostly Kevin. I think about the strangest things at night or when I have alone time. I got upset the other morning because I was remembering the phone calls I made shortly after Kevin died. I called my parents and my sisters. It was after 1am for them. As soon as they heard it was me on the other end of the phone, they knew he was gone. I remember saying, "Dad?" He said, "Is he dead?" and with my voice shaky, I said, "Yes." It didn't do any good to wake them up in the middle of the night. But Chris and I felt so alone out there. I wanted my family to know what I was going through. I guess it helped a little for them to cry at the same time I was - even though they were 2000 miles away.

I have his prayer cards at work propped up on my desk. One fell down yesterday and I picked it up and looked at it. I had a sudden huge surge of anger. I was pissed. I am so damn angry that my son is gone. I am angry that he had to endure pain in his life. It was necessary - but I so wish that he didn't have to go through that. Then I thought about the times when I had to leave the hospital and he was alone. His nurses loved him, but they had other patients to attend to. I hated to leave him. I don't know if this guilt will ever go away. I bring it on myself. Everyone can tell me not to feel this way - but it doesn't work.

You all know my motto..."It could be worse". People have been telling me how things happen in their lives and they think of what I'm going through and they realize that it could be worse. I appreciate the stories. I am glad that they are becoming more grateful for what they have even when it doesn't seem like much. A fried's hubby was upset over mud on the floor. But she reminded him that I would give anything to have my son track mud on my floor. I won't ever have that. Be grateful that your son is there to get your floors dirty. Others have debt - but then they see how much we now have and they are grateful. It's a bunch of different things. I'm glad my family makes people think about their situations. But I thought yesterday, "Wait a minute, I have the crappy life that people are grateful that they don't have!" It could be worse...you could be in Karen's shoes. And you know what? That's totally OK with me. I am extremely grateful for my life....because I know it could be worse.

You all take care. I'll keep my chin up.

Monday, September 25, 2006 6:37 AM

I spoke to Gracie's teacher that morning and she explained the problems Gracie had that day. Gracie was very angry in class that day. She was crabby and uncooperative. Their class project for the day was "family trees". Gracie had made a crown with her family members name on it. Kevin was listed and under his name it said "My Angel". Nina also explained to me later that when she dropped Gracie off that morning that a little girl was there kissing her little brother goodbye for the day. She wasn't sure if Gracie saw it or not - but she probably did. I think those things reminded her of her loss and what she won't have with her brother. She's definitely not a dumb kid. She's thinks about and says things that you don't expect a 4 year old to think or talk about. Having her brother in her life and having him in the situation he was in, made her grow up faster and deal with things a child wouldn't normally deal with.

I did contact the hospice bereavement coordinator (Dory) that day when I heard that Gracie was having problems in school. One thing I mentioned was that people had mentioned to me that we should put Kevin's things away. I hadn't done that for two reasons. One, for Chris and me. It is hard to put those things away. The other, for Gracie. I didn't want her to think that we were putting his things away and that she should forget him. How do you explain that you are removing his things and traces of him, but it doesn't mean she will forget him or stop thinking of him. She would definitely notice if we removed Kevin's things and changed his room. We can remove a few (well, more than a few), but we aren't going to remove them all. And his room is going to stay as his room for now. We refer to it as his room and until we are ready to change that, we won't. Dory said that we are doing what we should be doing. People in their profession don't recommend to remove those things at this time. I felt better hearing that from her. I would feel absolutely horrible if I knew that I was causing her pain. Dory also asked if we took Gracie to the cemetery. We do. Every Sunday. But I asked her if she wanted to go yesterday and told her that she didn't have to. She said she wanted to go. I asked again a little later and told her she didn't have to go. She said, "I know Mommy. I can stay with Gan and Pop if I don't want to go. But I want to go." She said it will a little bit of irritance because she had already told me that she wanted to go. She helps pick out his roses every Sunday. She leads us to his grave every time we go. "Follow me" she says. She always has a balloon in hand, marching like a band leader to his grave. She helps me with his water container and puts the balloon in with the flowers. She squatted down in front of his grave and said, "Hi Kevy." We noticed that Helen (next to Kevin) had flowers. We hadn't seen flowers there since we've been going. We always share Kevin's. But then we noticed that her Heaven Day was September 22nd. I explained Heaven Day to Gracie and she understood.

I had gone to the book store on Wednesday last week to see if I could find her something to help her with her emotions. I only found one for her age group. We've read it several times. Even though every time I read the darn thing, she ends up wiping tears away from MY face. She doesn't ask me why I'm sad, because she knows. I went to another store that evening and took her with me. They didn't have anything for her age group. She found a Princess book and she went to a little reading area to look at it while I searched for books. She managed to freak out a couple of people that were there with their small daughter. She repeated something that her Daddy had told her. Some time ago, Chris told her that the search lights in the sky at night (you know, the ones that celebrate openings of new stores, etc.) well, they are looking for witches that were flying around the sky on their brooms. So, the parents were a little speechless when Gracie told that to their little girl. They just half smiled and moved away from her. Gracie wasn't phased. She just went back to reading her book.

I'm doing OK today. I had some rough nights this past week and weekend. I was in the bathroom with Gracie one night while she was brushing her teeth and for a split second, I wondered who was watching Kevin downstairs. I forgot he was gone. Then of course, the tears started to roll down my face when I remembered he was gone. I have a hard time when I am alone in a quiet place. Like the bathtub or my car. Or going to bed. That seems to be the worst for me. I say, "Goodnight Kevy" every single night as soon as I lay my head on the pillow. There hasn't been a night when I didn't tell him goodnight. I have a sign in his room that says "always kiss me goodnight". I always did. I will tell my son goodnight every night until I can once again, kiss him goodnight.

Mommy misses you baby.

Thursday, September 21, 2006 6:29 AM

I've got a lot on my mind and it's starting to affect my mood. I'm just feeling bummed. We received our hospital statement from LPCH in CA yesterday. It was over $430,000. Our portion is $129,000. Hopefully Medicaid will assist us with the bill. If not, oh well. We can have it paid off in 20 years. Just the fact that I received it is what threw me off. It just brought back a lot of unhappy memories for me. I was complaining to Chris that they didn't listen to us in CA and I think that contributed to his death. It's in the past. There isn't anything we can do. He said that we did speak up, but we gave in and let them do it. He's right. We didn't fight hard enough I guess. But again, it's over and nothing can be changed about it. Maybe that is what is bothering me.

My heartache is also compounded by Gracie's troubles. She isn't behaving in school and is giving the teachers a hard time. They said that she is very angry. They feel that it is stemming from her loss. I don't know what to do. I have contacted the hospice program to see if they have someone that can speak to her. Maybe I'm not asking the right questions. I don't know how to help her and it's tearing me apart. The teacher wants me to call her today to discuss Gracie. I'm not really in a great frame of mind today, so we'll see how it goes.

I just keep telling myself that it could be worse. It has been worse. We'll get through it.

You all take care.

Wednesday, September 13, 2006 6:39 AM

I went to a luncheon yesterday. I was asked how many children I had. I was sitting at a table where I only knew 2 people. I said I only had one child. A daughter that is 4 years old. I immediatley felt like an asshole. The only two people that I knew were looking at me as soon as the question was asked. I figured, from recent experience on how people react, that it was best that I didn't mention that I had one child in heaven. I didn't want to make them feel uncomfortable. But, of course I couldn't keep my mouth shut about Kevin stories, so I probably confused them later on when I would mention my son. I think they probably realized I was the one who lost my child. E-mails were sent out at work when he died so they must have been able to put it all together. I have reasons, or excuses, for not saying that I had two children....but I still feel like an asshole. And you know what? I'm not going to do that ever again. I don't care if it makes them feel uncomfortable. I can't feel like this again. Actually, I'm kinda screwed either way. I still recall the look on that woman's face in Blockbuster when I told her that one of my children had passed away when she inquired about my kids. I feel bad for them if I mention it and I feel like an ass if I don't. I rather feel bad for them then feel like an ass. (Sorry Kev baby....Mommy shouldn't have done that. I won't do it again.)

A friend sent me an e-mail yesterday regarding the idea of sending a note to Kevin on a balloon and she wanted us to send one up to him from her. Then I wondered if others would like to do the same. So, I want to know if anyone is interested. We would like to meet at the cemetery on Kevin's 3rd birthday (November 11th). I want people to bring messages they want to send to Kevin and we will have plenty of balloons to attach them to. Then we can all send them to Kevin together on his special day. What do you all think? Please send me your thoughts. If you can't be there, you can give me your message and I will send it for you. Maybe we could read them out loud to each other one at a time before as they are released.

One more thing...I am going to have this journal printed along with the guestbook entries and e-mails you all have sent to me. I would like for you all to send me e-mails on how Kevin touched your lives. How did he make a difference in your life? I know good has come from my son being on this earth. I want to hear about it and put it in his book. Can you all do that for me? Chris and I would love to hear from you. Just send me an e-mail (km318x@nih.gov) or your can write it in the guestbook. Thank you all so much. Don't forget to tell me what you think about the messages to Kevin on his birthday too! I would appreciate your input on the idea.

You all take care. God bless.

Tuesday, September 12, 2006 6:49 AM

Our weekend was nice. We went to the cemetery on Sunday like usual. I just can't get through a visit without crying. I'm not sure if I ever will be able to. It's been 6 months since we lost our son. In a way, it drags by, it seems like forever ago that I held his jolly little self in my arms. But it also feels like yesterday when he took those last breaths in my arms. I told Chris that I don't understand how this gets easier. Each day that passes makes me miss my son even more. It makes me yearn for him even more. I was thinking last night about having Chris, Gracie and me write notes to Kevin on a piece of paper and attaching the notes to a balloon. We can go to the cemetery and send them up to him. I think Gracie would like that. I also think it will be a little healing for Chris and me.

I hope you all like the new pics. There are 2 new ones on the photo page also. I love the Halloween picture. I think of that memory often. He was so good that night. I remember the cow ear kept wilting and it would be in his face and he would keep twisting his head to get the ear our of his line of vision. It was his only Halloween that he had at home. The first he was in NICU and the 2nd he was in PICU recovering from heart surgery. He was so strong. It's amazing the courage and strength these kids have. Just amazing.

Friday, September 8, 2006

That is a very nice poem you put in the guestbook Lesley, thank you very much.

We drove by the cemetery on our way to dinner last night. It was 6pm. We had reservations and didn't have time to stop. But I knew by the time we finished our dinner, that the cemetery would be closed and we wouldn't be able to stop in. I cried while sitting at the light out front of the cemetery. I asked Chris if he felt bad for not going in. To a point he did, but he said that Kevin understands. We are going on with our lives and doing things. I personally felt like he was right there, so close, and I could go to see him and I didn't. I felt horrible guilt. It also reminded me of the times that I couldn't spend with Kevin. Times I had to be at work or be at home for the rest of my family. I hold guilt, along with a little bit of anger, for missing that time with him. God, I miss my little boy! I want to talk about my son. I find myself trying to fit him in to conversations somehow. If I see an opening where a Kevin story could fit, I talk about him. But I am honestly so sick of people looking at me with such pity when I try to talk about Kevin. I get this sad, sorrowful look from people when I talk about my son. Or I have people look at me in horror, like the skin is peeling off of my face or something, if I mention his name. People want to talk about their families and children. So do I damnit. Even though my son is gone from this earth, he is still my child and I still have memories and thoughts about him that I want to share. It's getting to the point that I can't talk to people about my son because they are uncomfortable with it. I am so proud of my children - both of them. I want to brag about my kids just like any other mother. I am starting to feel like I can't....and that hurts.

Tuesday, September 5, 2006 6:07 AM

I hope everyone had a good weekend. Ours was pleasant. I got to relax a little bit. Last Thursday Chris and I attended the parent orientation for Gracie's school. I honestly didn't think that it would be hard for me....but it was. I actually almost got up and walked out at one point. They talk about our children and how much we love them. They talked about our kids futures. It just reminded me that our future is going to be without Kevin. Chris and I won't get to go to a school orientation for Kevin. We won't get to see him in any Christmas pageants or help him with his homework. I hope this gets easier as each year goes by. We got some papers to fill out for Gracie's class. I had to fill out a paper that listed the names of the people in her immediate family. I stopped for a split second and wondered how to list Kevin. I didn't think for a second not to include him on the listing because he is and always will be her brother. I ended up putting Angel Kevin (litle brother) on the paper. She will also have a Super Star week where the week will have some focus on her. Each child gets their own Super Star week. She is to bring in pictures of her family, give some information about herself and then she brings someone in on her last day and they share a story or something with her class. It will probably be me. I'm not sure how the children will react when they see Kevin's picture. I'm sure she will tell them that he is dead and he is an angel. So I'm also not sure how they will react to that either. I'm a little worried that they will ask their parents about death sooner than their parents would like to explain it. Gracie is comfortable with death soon in her life. She was sweeping the floor the other day (dried up Play Doh) and she blurted out, "I'm going to be so happy when I die." Why? Because she will get to see Kevin again. I told her not to be in any hurry because it was going to be a very long time before she would get to go to Heaven. She was eating a popsicle the other day while she was watching a movie. I was reading a book, but it caught my eye when she leaned down and held her popsicle about a foot off the floor for a couple of seconds and then put it back in her mouth. I looked at her and asked what she was doing. She said she was giving Kevin a lick. I believe that she thinks of him more than we are aware of. She (along with Chris and me) will start therapy in October. That is the earliest time they have something available for kids her age.

I was watching TV on Saturday night about gangs and there was a guy who had died from a drug overdose. He was in his early 20's. It showed his funeral and it showed his friends and family crying over his casket. I got upset for a split second...then I got angry. I was angry at him. I thought he was selfish. Selfish to take those drugs knowing the risks. He knew he could die. But he didn't care. He didn't love his life enough to care and he didn't think of the people he would be leaving behind. I know his mother's pain and I know that it didn't have to happen. It just frustrates me.

That night, Gracie and I went to the video store. A woman in line let us go in front of her because she thought Gracie was cute. I told her that she didn't need to do that, but she insisted. She struck up a conversation by telling me how pretty Gracie was. Then she asked her how old she was. You should see people's faces when she puts up 4 fingers. They look at me for validation. She's a big girl. Then she asked me if I had other kids. I told her I had a 2 year old litte boy that passed away in March from liver disease. She was quite shocked. Then I moved the chit chat on to how Gracie wants another brother and a sister. The woman still had that horrid look on her face. I seemed to be OK to her and I wonder now if she thinks that I am a cold person because of that. I'm not going to break down in the middle of Blockbuster to a stranger. I tuned out the hurt for those few minutes. Sometimes I can...and sometimes I can't. I thought about the incident for a while afterwards. And I still think about it. I can't read her thoughts and I can't keep trying to read into what she was thinking. Let it go Karen....

We had gone to the cemetery on Sunday. Chris and I stand there together and then we each get our own quiet time with Kevin. I told Kevin that I wished I had spent more time with him for the times he was in the hospital. I was sorry for the things that happened in his life that caused him to be uncomfortable or in pain that shouldn't have happened. I told him that I wished I could change many things, but I can't now. I told him how proud I am of him.

I took a bath last night - I was alone for about 5 minutes. I cried the whole damn time. Gracie came in and asked if she could get in. I didn't want to be alone any longer, so I let her. She asked why I was sad. Even though I had stopped crying she could tell from my eyes that I had been crying. I told her that I missed her brother. She told me she did too and she gave me a hug.

You all have a wonderful day. Take care.

Wednesday, August 30, 2006 6:20 PM

I was up crying again last night. I had to eventually sit up because my head got all stuffy and I couldn’t breathe. I sat on the edge on the bed and stared at the clock, repeatedly wiping away my tears with one of Kevin’s old baby washcloths (since the tissues were all gone). I watched it for almost an hour. Staring at it made me think of the time that Kevin died…10:18. I looked down at my arms and picked them up as if Kevin was lying in my arms again. I remembered how big he got. I remembered the time I held him a few days prior to his death. He was uncomfortable and he had the tube in his side for the dialysis. It took 3 nurses to get him out of his bed and on to my lap. But the second that they put him on my lap, he looked different. You could see calm in his face. He was comfortable. He was on his Mommy’s lap. I held him for hours. My legs started to fall asleep and I was uncomfortable, but it didn’t matter. My arms were open for him again last night. I wished so much that he could be in them. I was exhausted. Then that made me think of all the times that I wanted and needed to sleep when Kevin was home – but I couldn’t for one reason or another. I recalled the nights when we didn’t have nursing care. I would have him lying asleep on one end of the couch and I was curled up on the other end with my timer set for every hour. The timer didn’t matter because he had me up every 20 minutes to change his diaper. I was so tired. But now that he’s gone, I can’t seem to get sleep. I take sleeping pills – but lately they don’t seem to work and I just lay there and cry. I waited until I was almost falling asleep while sitting up and then I laid down, said goodnight to my little boy and went to sleep.

I want to share a funny memory with you all. (Sorry Judy.) But this always brings a smile to my face. We were in the living room and Kevin’s Judy came to visit. She was on one end of the couch, Kevin was in the middle and I was on the other end. Chris was in the recliner next to Judy. I had to do something with taping and pinning Kevin’s feeding tube to the back of his shirt so he was sitting facing Judy and she was holding him up so he didn’t fall over. Luckily her back was now to Chris. Kevin saw that her shirt was opened a little bit because she was leaning towards him. So he reached over and pulled it open MUCH more. We were cracking up! Then he turned his face to me and saw me out of the corner of his eyes and he gave that Kevin giggle. He was up to something. Then that stinker turned around to Judy again and pulled the majority of her right boob out of her bra! Us laughing made him laugh more. He wasn’t stupid – not one bit. Sometimes he would pull open my shirt if he was on my lap and look down to see what was there. It was always the same thing – but he enjoyed doing it. He would practically get his whole entire face down into my cleavage! Then he would stick his hands in there to fish around while looking me straight in the face. It was like he was going to find a toy shoved down in there or something. He always came up empty handed – but it didn’t stop him from doing it over and over again.

There….I feel a little better now since I told one of his happy time stories. Hopefully sleep will come easily tonight.

You all take care.

Tuesday, August 29, 2006 6:46 AM

We received an invitation in the mail yesterday with Kevin's name on it. It was from the NICU at INOVA Fairfax hospital. It was inviting him to a NICU graduation ceremony. We receive them every year - but this time it put a lump in my throat when I saw it. I need to contact them to have him removed from the listing. I don't want to receive one next year either.

I've been poking around bereavement internet sites for parents. I want to find some help for Gracie. Chris and I are doing what we can, but this is so unnatural, that I don't know what more I can do or should be doing. I want to help her express her emotions better rather than bottling part of them up (which I think she does.) She spoke of him this morning. We were speaking of the rain and how God makes it rain because He sees that the flowers and trees need the rain so they won't wilt. I said that the rain is stored in the clouds, but Kevin doesn't get wet in the rain because he is on top of the clouds. She said that Kevin sits up there and sees Chris when he goes out on the front porch to sit and when she goes out that he can come down to see her. Then she gave me a big hug.

I was poking around the Montgomery Hospice website. I signed Chris and I up for a class in early December called "Winter Blues" since it will be our first Christmas without Kevin. Someone called and left me a message stating that they have a group called "Connections" that all 3 of us can be in. I kept putting off getting help. I didn't want help. I didn't think I needed it. Part of me still thinks that I don't need it. I also thought about vounteering, but the website states that you can't volunteer if you have lost a loved one within the last year. I agree, it would be difficult.

I found this poem and switched it to include Kevin's name. I find myself wanting to talk about Kevin to others. But I think it makes people uncomfortable. Especially if I cry while doing it. I think that is one reason why I am willing to try bereavement counseling now...because they will listen to me talk about Kevin and they will understand why I am crying and it won't bother them.

The Elephant in the Room

There’s an elephant in the room.
It is large and squatting, so it is hard to get around it.
Yet, we squeeze by with, “How are you?” and “I’m fine”. . .
And a thousand other forms of trivial chatter.
We talk about the weather.
We talk about work.
We talk about everything else —
except the elephant in the room.
We all know it is there.
We are thinking about the elephant as we talk.
It is constantly on our minds,
For you see, it is a very big elephant.
But we do not talk about the elephant in the room.
Oh, please, say his name.
Oh, please, say ‘Kevin’ again.
Oh, please, let’s talk about the elephant in the room.
For if we talk about his death,
Perhaps we can talk about his life.
Can I say ‘Kevin’ and not have you look away?
For if I cannot, then you are leaving me
Alone . . . in a room . . .
With an elephant.

Terry Kettering

Monday, August 28, 2006 6:42 AM

I wasn't worth a crap on Friday. I had no motivation at all. I was pretty mopey and seemed more depressed than usual. The day was a blur. I was crying a lot more than usual too. It's OK, I'm better now. I call them my "Bad Kevin Days". I only get maybe one or two a month.

Elizabeth (the bereavement coordinator from JHH children's center) contacted me to get some input on in-patient hospice care for children. It is something that they are thinking about setting up. She also wanted to know about at home care thoughts that I had. Here's my response to her:

An in-patient hospice facility has good points and bad points. What would the setting be like? Like a hospital room or a comfy bedroom? I wouldn’t want my child to spend his last days in a sterile feeling environment (like mine did.) I also would like to be able to stay with my child and be comfortable myself. I wasn’t allowed to stay in the PICU with Kevin. As a parent of a terminally ill child, you are scared to leave them because you don’t want to miss their last moment. You also want to spend as much time as possible with them because you don’t have the rest of your life to spend with them. The setting would be a major factor for me. Also, the nurses and care would have to be consistent. We always wanted to be around for shift change because you never knew what nurse he was going to get. Would it be a nurse that knew him? If not, we had to tell her about all of his quirks and how to make him happy. If there was more consistency, then I would be more comfortable leaving for a break. Same issue with the doctors. But it would be good to have because then you wouldn’t have to worry about getting help at home. It was so hard to find a reliable, smart, honest nurse to care for Kevin. The nursing companies are in it just for the money, not for the kids. We went through several nursing companies. The communication with all of them was extremely poor. Their criterion to hire a nurse was only that they had to have a license. I had nurses come to my home that didn’t know how to measure medications with a syringe. I had nurses that didn’t speak English. I had nurses that were lazy and would give my son medications to make him sleepy during the day so they could watch TV and do nothing for him. I have horror stories that I could tell. I wished for a consistent schedule of nurses and I finally got that late in Kevin’s life. It was emotionally strenuous to not know who was going to show up at your door to take care of your son each night. The shift started late and if it was someone new, I would have to take at least 1 hour to give them orientation. Then I couldn’t sleep because I wasn’t sure if he was getting the care he needed. As a parent, you need a break every once and a while. But it’s hard to trust someone to care for your special child. Chris and I only took one break from Kevin. We took Gracie to a hotel for 1 night and Kevin and Gracie’s daycare provider stayed with him that night. We thought about respite care – but how could I have a stranger come to my home, take a crash course in Kevinology and expect me to not worry about him while I am gone? They don’t allow for you to have that person in your home to observe you take care of your child and learn. They don’t give you time to have your child get used to that person. Chris would talk often about starting our own nursing company because we knew what people needed and what was important since we had been experiencing it.

When we were told that Kevin wasn’t going to make it – all I wanted was to get him home. And if I couldn’t have him home, I wanted him at JHH so we could be surrounded by people that cared about him. But he couldn’t make it. Chris and I were totally alone out there in a strange place. We were with people who didn’t know Kevin and didn’t shed a tear over losing him. Now that I think about it, another factor would be how sick my child was and what care he needed. If Kevin didn’t need some sort of life support, I would have preferred him to be in his own home. If he required some assistance until the end like he did, then I would prefer a hospice setting rather than a cold hospital room.

I hope this helps Elizabeth. Please let me know if there is anything I can do to assist. It makes me feel like some good is coming from my experience of losing Kevin. One more thing….we had a photographer come to our home in May 2005 to take pictures of Gracie and Kevin. I was recently in touch with her to get more copies and told her how much his pictures meant to me, especially now that he’s gone. She told me that she is getting ready to start on a project with Children’s Hospital and will be taking pictures of terminally ill children. I think that is a nice service to offer. Some families would like to have a picture of their child or them with their child before their health deteriorates too much. Take care Elizabeth. Have a great weekend.

When Chris and I went to the cemetary on Sunday we spoke about how it's been almost 6 months since our Kevin left us. It seems like a long time, but it seems like days ago that we held him in our arms. Those last moments with him are forever etched into our brains. In some ways, time is dragging on for us since we lost Kevin. But in other ways, it is going by so fast.

I'd like to share a poem that a friend sent to me. Get your tissues ready...it makes me cry, but it also makes me feel better....

A shadow of joy flickered; it is me.
I told you I wouldn't leave.
My memories, my thoughts are imbedded deep in your heart.
I still love you.
Do not for one moment think that you have been abandoned.
I am in the Light.
In the corner, in the hall, the car, the yard ~
these are the places I stay with you.
My spirit rises every time you pray for me,
but my energy comes closer to you.
Love does not diminish; it grows stronger.
I am the feather that finds you in the yard,
the dimmed light that grows brighter in your mind,
I place our memories for you to see.
We lived in our special way,
a way that now has its focus changed.
I still crave your understanding
and long for the many words of prayer
and good fortune for my soul.
I am in the Light.
As you struggle to adjust without me,
I watch silently.
Sometimes I summon up all the strength of my new world
to make you notice me.
Impressed by your grief,
I try to impress my love deeper into your consciousness.
As you should, I call out to the Heavens for help.
You should know that the fountain of youth does exist.
My soul is now healthy.
Your love sends me new found energy.
I am adjusting to this new world.
I am with you and I am in the Light.
Please don't feel bad that you can't see me.
I am with you wherever you go.
I protect you,
just as you protected me so many times.
Talk to me and somehow I will find a way to answer you.
Mother, Father, son or daughter, it makes no difference.
Brother, sister, lover, husband or wife, it makes no difference.
Whatever our connection ~ friend or even foe ~ I see you with my new eyes.
I am learning to help wherever you are, wherever I am needed.
This can be done because I am in the Light.
When you feel despair, reach out to me. I will come.
My love for you truly does transcend from Heaven to Earth.
Finish your life with the enthusiasm and zest that you had
when we were together in the physical sense.
You owe this to me, but more importantly,
you owe it to yourself.
Life continues for both of us.
I am with you because I love you
and I am in the Light.

-- Author Unknown

Friday, August 25, 2006 6:30 AM

We made it back. We all had a great time. I need a vacation to recuperate from this one. Gracie had lots of fun and Chris and I got lots of exercise. But Kevin was on our minds a lot. I cried myself to sleep only 1 night. It's still so hard.

Before we left, someone called me at work. I hadn't spoken to her since Kevin died. She politely asked how I was doing. I politely told her that it sucks to have him gone. I miss my son every day. I can't lay down to sleep at night without seeing my son how he was the last time I saw him...laying in his casket. Of course, she was quiet. But I told you all that I'm pretty much tired of saying that I'm OK. Because I'm not and I'm not sure if I ever will be again. I'll strive to get to be as OK as possible. But I'm not even close yet.

I was fine last night - until my daughter started to cry herself to sleep. I asked what was wrong and she pointed to the ceiling. I knew what she was pointing to - but I acted like I didn't. I tried to be silly to see if I could get her to laugh. I said, "You are crying because you don't like the ceiling??" She just kept crying and pointing. Then I heard her whisper Kevin's name. I told her that I knew she missed him and Kevin knew too. She started to cry harder and said that she wished she could have just one more hug from him. Then I lost it (just like I am now.) There was nothing I could say that would comfort her. I tried. But I can't do anything to get her that hug. There is nothing I can do to get her brother back and that is what I want to do for her. I want her pain to stop more than I want mine to stop. My hugs weren't enough last night. Neither were her father's. It seemed that only Kevin would do. I told her that I was sure Kevin was giving her angel hugs. I closed my eyes and could picture him holding on to her tight. We said good night to Kevin and she eventually faded to sleep.

I thought I only had one child who's pain I couldn't take away....but it's two.

Friday, August 18, 2006 6:10 AM

It's been a busy week for me (work wise). I really notice a change in me, especially this week. Things that would normally give me an upset stomach or diarrhea from nerves - no longer do. It's my "after Kevin" attitude. It's amazing. Problems seem to be so insignificant after the loss of my son. I know that they can be fixed and if not, I will learn and grow from my experience. That's all I can do. I don't worry anymore either. I did in the beginning with Kevin, but I quickly realized that it didn't help. I prayed instead of worrying. Mom told me last night that normally people don't develop this type of outlook until they are much older. Well, they didn't lose a child. Nothing can hurt me any more than I have already been hurt. Nothing can ever come close. Ever.

I'm trying to teach others my new outlook. Some have come to me all worried about something that has already happened and has been corrected. I tell them, "Did you learn from your experience? (yes) Are you going to do it again? (no)" Then forget about it now. There is no use in worrying about something like that after it has already happened. Learn from it and move on.

We are going away tomorrow for a mini vacation and won't be home until Wednesday afternoon. I'm gonna go to the cemetery at lunchtime today to see my boy since we won't be able to on Sunday. I can't go more than 1 week without seeing him. That's too long for me. Chris too. Nina got some pinwheels from the fair for him. I'll give him one of those today along with a new balloon. I talk to him every day. I tell him that I love him every night before I lay my head down to sleep.

You all take care and have a great weekend. God bless.

Sunday, August 13, 2006 7:47 AM

I did go to the cemetery on Friday. I cried my eyes out while I was there, but I felt better when I left. His pinwheels have been gone for a couple of weeks. I haven't been able to find anymore at the store. His balloons keep getting taken away also. So, I have a trunk with 4 new ones so I can keep replacing them. I have Big Bird, Pooh, Tazmanian Devil and Tigger in my trunk. I took pretty flowers that the lady at the flower shop said the deer wouldn't eat. We'll see what's left when we go today. When I was there on Friday I could swear that I had a little whiff of Kevin. It was only for a second. It was on my hand when I went to wipe away my tears. It's wasn't his yummy lavendar smell. It was his "I've just thrown up and need a tubby smell". I feel like I am still taking care of him when I go to his grave. Chris feels the same way. He cleans his marker thoroughly every time we go. It's the only way we can still take care of our boy. I talked to Kevin last night in the tub. I told him that he was a lot of work - but I miss taking care of him. That was my job. I told him that I asked God to let us keep him - many times. But He had other plans for Kevin. I'm not angry about that. I'm just so sad. I need to remind Chris that the next time I beg him to keep Gracie busy so I can have a bath alone that he needs to remind me that all I do is cry.

We went to the fair yesterday. We had a good time. But even at the fair, I missed my son. He's always in our minds. He's mostly in mine right before bedtime when I'm trying to go to sleep. I always end up crying. I tell him that 'Mommy can't do this right now Kevin' and I put him out of my mind so I can stop crying and get some rest. My problem is that it isn't always happy moments in my head. I have a lot of bad memories - a lot. Time will heal. It's only been 5 months. (Uh oh, I'm starting to cry.) 'Only' 5 months....it seems like an eternity since I've held my son. And I've got the rest of my life to go before I can hold him again.

I was thinking this morning about how people said how strong I was. I don't feel strong anymore. Kevin gave me my strength. For now, for a while, I want you all to do me a favor...I will not think of you as rude or unkind....but don't ask me how I'm doing when you see me or talk to me. I don't want to answer. You know how I'm doing. Just give me a big old hug instead!

Gracie is hovering over me while I'm typing this. I am doing laundry too. There is something funny about the pipes so when it drains, it smells like a toot. She doesn't like it. She said that "angels are lucky because they don't need to breath, so Kevin doesn't have to smell that yucky toot smell. I'm not an angel yet so I have to smell it." Then she wished that she was an angel because she wants to go see Kevin. I told her that she needed to stay with me. Then she started to cry because she wants to see Kevin. I told her that she had to see him in her memories and in his videos and pictures. She's not happy about that - but she'll have to settle for it like we are.

You all take care.

Friday, August 11, 2006 6:20 AM

I'm a little bit weepy this morning. I just feel bummed out and sad today. I've been thinking about Kevin a lot. I was watching babies being born on The Learning Channel last night. I couldn't watch those shows for the longest time. Sometimes I still can't handle it. But I kept watching last night and crying while I was thinking about how happy those new parents are. I was thinking about the experience I had with my children and how it will be for Chris and me if we get to experience that again. We want to...eventually. (Stop asking me when though...because I don't know. God will make it happen for us when He feels the time is right.) One of the cases had a little girl that had a disease that could cause mental retardation. It showed the parents being told that she had this disease. I felt for them. I'm sure they felt as though they were losing thier child. I thought they were lucky. They won't know for a while how severe her case would be. At least they have her. I've thought about the complications we could have if we had another child. It's OK. I honestly don't think that God would have me go through something like that again. But then I think that since we are good people/parents, that He knows we can handle special kids. They are all angels. He also may decide that we won't have any more at all. We'll just wait and see what happens.

Today is going to be a cemetery day for me. I'm gonna go on my lunch break to see my boy. Gracie and I are going to the fair on Saturday and to the pool on Sunday. Our weekend will go by pretty fast.

You all take care.

Thursday, August 10, 2006 6:23 AM

I had CPR/AED training yesterday. An AED is the automated electronic defibrulation device in case someone needs to be schocked. I can't tell you how many times I just wanted to get up and walk out of the class. It was extremely difficult for me. Hearing about the gasps someone might take after their heart stops beating (which we experienced personnally when Kevin passed). It was just a bunch of things that were upsetting to me. But - I stayed in there and sucked it up. I held back my tears when flashes of Kevin went through my head. I need this training to so I have the ability to help someone in the future. I hope it is never needed - but I know I can do it now.

I didn't get a chance to go to the cemetery the other day like I wanted. My evening wasn't the best either. I was very sluggish and tired. Just emotionally wiped out. After a good nights sleep, I was better the next day. I definitely don't get the "Mommy of the Year" award. I fell asleep on the couch. I heard Chris come home and ask where Gracie was....I didn't know. She was no longer in the living room with me. I called for her but she didn't answer. I couldn't find her. I went upstairs and she was sound asleep in her bed - at 6pm. I'm lucky she is a good kid and didn't get into any trouble while I was asleep! I felt like crap about it though. I've never done anything like that before. It was only for about 20 minutes - but still...But, I have to forgive myself for that and move on. That's what I'm all about these days....moving on.

Wednesday, August 9, 2006 6:37 AM

I didn't have a good afternoon yesterday. Someone I hadn't seen in a while came in to work and asked me how my little boy was doing. I'm sure I looked like a deer caught in the headlights. I took a sip of my water and said that he had passed away. The guy said he was sorry. He also said, "Well, by the way you talked you knew it was coming eventually so..." So? So what? I looked at him and said, "So do you think that makes it any easier on me? Because it doesn't." I wanted to cry so bad. I don't think I made him feel bad. People just don't know what to say to me. We talked for a little bit and I kept taking sips of my drink and swallowing really hard. I was holding back my tears and it was tough. Yes, I did it again...I didn't want to cry in front of someone because of how it would make them feel. It's stupid. So, I cried on the way home instead. I got all dried up before I picked up Gracie because I didn't want her to worry about me. I was in a funk for the rest of the evening. I wasn't feeling well overall so that just added to it. I'm a little better this morning - but not over it. I think I need a little trip to see Kevin this afternoon. I talk to him there and it makes me feel better. But not until a lot of tears are shed. Uh oh, they are starting to shed right now. I better go.
Take care everyone.

Tuesday, August 8, 2006 6:23 AM

I had a pretty bad time trying to get to sleep on Saturday night. A lot of crying. It's those same old thoughts that keep running through my head. I cried a lot at the cemetery Sunday morning too. I told Kevin that I was having a hard time recently. I always tell him how much I miss him and miss holding him. I told him that I was sorry for all of the pain he endured when he was alive. I wish I could have been able to take it away from him. Now it is my turn for the pain. I live with it every day like he did - but mine isn't going to end for a very long time. I could hear his little giggle in my head when I was standing there at his grave. He always closed his eyes when he would giggle. I'm thankful that he did have happy times. Early on in his life, I didn't think he would ever get there. But he did. Chris and I spoke about how thankful we were for Kevin. Sometimes I stand in the middle of that cemetery at my son's grave and wonder why in the hell I'm there. It doesn't always feel real that he's gone. I look down and see his face smiling back at me and it sinks in. It's just so wrong for a mother and father to have to visit their child in a cemetery. Really wrong.

Friday, August 4, 2006 6:37 AM

(Pardon me for the gentlemen reading this - but I tell it like it is.) Having PMS on top of the emotional roller coaster that I am already on really sucks. I get more weepy and more angry. Mostly, more angry. I get angry about the things that I can't change. Things in the past. I was upset last night because I was thinking about the times that Kevin was in the hospital and I couldn't be there for him. I had to work. Kevin was a baby - he didn't understand that. All he knew was that Mommy wasn't there. (Oh great, now I'm starting to cry.) I recall the look on his face every time I walked into his hospital room. He would put his arms out for me to hold him. I missed out on many precious days with him. I know, I know, I'm lucky to even be able to keep my job through all of that. I keep telling myself that, but it doesn't help. I knew that Kevin had wonderful nurses taking care of him on those days. I would call to check on him several times a day. And I would cry as soon as I got off the phone with them. Sometimes they would put the phone to his ear if there was a phone in his room. He would be fussy and then when he heard my voice he would stop and listen to me. I could hear his little tiny breaths on the end of the line. My family is the most important thing. I think it's because he's gone and I won't have the feeling of ever holding him close again that makes me feel angry about the time I lost. I wish I could have spent every single day holding him and caring for him. I miss him. Every night before I go to sleep I tell Kevin, "Good night Kev baby - Mommy loves you and misses you."

Well, I can tell already that this is going to be one of my bad "Kevin" days. I'll do my best. I'll put on my happy face and try to get through it without ripping anyone's head off. Wish me luck. Actually, wish Chris luck and hope that I'm better by the time I get back home today. :) Poor guy....but he understands where my frustration is coming from.

Take care everyone and have a great weekend.

Thursday, August 3, 2006 6:55 AM

Well, I watched TV last night before I went to bed. The show I picked wasn't a good choice for me. Although I didn't realize it until it was too late. It was on The Learning Channel. I love that channel. Anyways, it was about a couple who have 23 children. They adopt hard to place kids. Kids with Downs Syndrome, kids that are a product of rape, crack babies, etc. They are on welfare, of course, because the cost of raising these children is extreme. The mother was talking about one little boy and how he was the mascot of the family. It showed video of him - he was adorable. He had Downs. Then they went on to talk about other stuff. Then they got back to him. He developed cancer. He was only about 3 years old. He had a very tough, painful road through chemo and eventually they were told that there was nothing more the doctors could do and that they could take him home. The doctors had expected him to pass away within 2 days. He didn't. He chugged on for just a little while. He was on oxygen. One day, he pointed to the oxygen tank and told his Mommy, "No thank you." He wanted it off. So they turned it off and he passed. She talked about the experience shortly after he had died. Needless to say, it screwed me up. I was a total mess. I could relate with her about how he had good days and bad days. He would be doing so well and then in an instant, he was bad again. He died 11 years ago. She was welling up with tears talking about it. I don't blame her. I don't know how a mommy can not get emotional even after so much time has passed. Her and her husband spoke about how they will probably lose most of their children to medical issues. But at least they will have a good life while they are here. I couldn't do that. I think that is selfish of me to think like that too. I couldn't bear to lose my children. They aren't thinking of themselves. They are thinking about giving these kids a good life while they are here. It takes special people to handle that and I know I'm not one of them. The trauma and mental anguish would just be too much to handle over and over again.

Well, I have to run. I'm a little late. You all take care!

Tuesday, August 1, 2006 6:06 AM

Gracie sure is missing her brother. She's been talking about him more and more these last few days. She comes up to me and tells me that she needs to tell me a secret. She whispers in my ear, "One day, you are going to Heaven and you are going to be SO happy to see Kevin again. I am going to be happy to see him again too, but it will be such a long time before I can see him again." I honestly don't think that she is talking about death because she is scared of it. We talk about Heaven and how happy Kevin is now. This was such a horrible experience for a young child, but it is preparing her early for things that will happen again in her life. She knows that it's not a bad thing to die. I had mentioned to the pre-school coordinator, who is aware of Kevin and what happened, that she talks about Kevin all the time and to please tell her new teacher about her situation. She told me that she was her new teacher and she would be more than happy to talk and listen to Gracie as much as she wants about her brother.

Last night before bed she was sitting on the potty and she called to me. I went in. She said that she misses her brother a lot. I got a little choked up when I was telling her that we all missed him and we had to think about our happy memories of Kevin and look at his pictures and see his smiling face. I thought to myself...that's all we have. When she layed in bed with me, she made room for Kevin and was talking to him. She shared her stuffed puppy with him. Again, I got a little teary eyed because I remembered that I was never able to lay with Kevin the way that a Mommy likes to do. I couldn't because of his tubes. I could lay with my upper body on his hospital bed - but that was as close to it as I got. Maybe one day...

I look for his face in the clouds. I think about him all the time. I guess in a way, it is getting better. I still have my bad days. But I'm having good days too.

You all take care.

Thursday, July 27, 2006 6:19 AM

Chris took Gracie to the park the other day. Neither of us have taken her in quite some time. It's just hard for us since Kevin's been gone. Gracie told us that we hadn't taken her to the park in more than 80 weeks. :) I went to pick her up at the park an hour later to take her for a Slurpee. Chris was walking behind her and he was upset. I asked him what was wrong and he started to cry. There was a little girl and her Daddy at the park and the Daddy had asked Gracie where her brother was. (He had seen me there with Kevin several times.) Gracie told him that her brother was an angel now and he was in Heaven. Chris said that they guy was taken aback and turned to Chris and asked if that was true. Chris told him that Kevin had passed away and they guy started to ask questions. That's a tough situation on both parts. You don't want to find out something like that and then blow it off because its an uncomfortable topic....but Chris didn't want to answer too many questions either. It was understandingly upsetting for him to talk about it.

Chris and I don't like to see each other upset. But you can only comfort so much in our situation. I was crying last night as I was trying to get to sleep. I thought about waking him up. But I knew it wouldn't do me any good. I had to work through it. Which I did. Eventually. It's still so tough for us.

Miss Gracie (to change the subject) is in love with her bunny. She is trying to teach her the alphabet. The bunny isn't catching on....yet.

You all have a great day. Take care.

Tuesday, July 25, 2006 6:12 AM

I sent a copy of my journal entry to Elizabeth yesterday. She is the bereavement coordinator in the Children's Center at JHH. I asked her if I was normal. Here's part of what she wrote:

As far as your journal entry, and your grief responses, you are completely normal, Karen. I find the most helpful model of grief is to move back and forth between dealing with the grief and pain of loss and then avoiding or distancing from it to try to adjust to a new life. It is difficult to find the balance-some people end up on the extreme of thinking or dwelling on the loss; some end up on the extreme of trying to avoid dealing with it altogether. Most parents I talk with share the same thing you did-the painful images seem to stay in your mind. I can tell you that the good memories will start to be a comfort but right now the loss is too fresh and the pain too deep.

Some parents purposely keep a funny picture or special item that reminds them of a funny story with them in the purse or on their desk so when painful images are there, they can refocus on something else.

So, I am normal. I was starting to really wonder about that. There is so much back and forth in my mind. Ups and downs. I took a bath last night and I just started to cry out of the blue. I talked to Kevin. And after a few minutes, I totally stopped. I like to look at his pictures and watch his video to remind myself that his life wasn't all crap. When I think of things that happened, that's what most of it was...crap. Pain here, disappointment there. His suffering was so unfair. All of the suffering these little children go through is so unfair. It makes me angry. So, then I have to remember his little giggle and smiling face to remind me that there was good for him. I believe Kevin is being rewarded in Heaven now because of all of the suffering he went through. I keep remembering too that I need to be the best person I can be so I will be able to see him again.

Monday, July 24, 2006 6:10 AM

Not too much going on. I'm still moody.
Chris' mom and brother came for a visit on Saturday. They went with us to see Kevin because they hadn't seen his grave marker yet. Of course they thought it was beautiful. Saturday night we went to VA to pick up a new pet for Gracie. Her name is Lily and she is a bunny. A big, fat bunny. Gracie is SO happy to have her. Lily is 4 just like Gracie. Gracie talks to her a lot. She told Lily that they were the same age. She also told her that one day, God was going to call her to Heaven to be with Kevin because it would be his turn to play with her. She seemed to be totally fine with it. Of course, we plan on having Lily for a few more years at least. But I'm glad that Gracie understands. I think it helps to have her brother up there so her pets won't be lonely when it is their time. And I'm glad she is still understanding the meaning of sharing with her brother.

I don't want to talk today about my feelings. I will start to sound like a broken record. It still hurts.

Friday, July 21, 2006 6:41 AM

Another horrible night. I can't close my eyes without seeing Kevin. I try to focus on something else - but I can't. I only see him. I have to keep opening my eyes. Sometimes they are good memories...and most of the time they are bad. I think about our time in CA. I remember his viewing and everyone's faces and the smell of the flowers. I remember his funeral. I tell myself to think of good things about Kevin. Even if I can, it doesn't help. Remembering good things about Kevin just reminds me that that is all they are....memories. I know that I won't have the chance to make any more with him. So either way - it doesn't help. And when I try to change what I'm thinking about, I feel guilty because I'm trying not to think of Kevin. I ended up talking to him last night for a few minutes. I wonder if I woke him up since it was late.

We were out at dinner last night and the table had one of those little jukeboxes on it. Right when we were getting ready to leave the Louis Armstrong song came on. Kevin's song as Gracie calls it. We left because I couldn't handle listening to it right then.

They say that there are different stages of grief. The denial, anger, acceptance, etc. I've been through all of them. But it seems like I'm going through another cycle and they are switching back and forth on an almost daily basis. I still feel like he isn't gone sometimes. I get angry when I think about things in the past that I can't do a damn thing about now. So why do I get upset about it? I guess because I'm his Mommy and I want to protect him from everything. And I couldn't. I'm looking at his picture right now of him in his saucer. He's smiling at me. (And holding a toy in his hands that drove Chris and I NUTS.) Oh, I just realized that it is one that we put on his grave marker. Duh. Such a sweet boy. We miss you Kev honey.

Wednesday, July 19, 2006 6:36 AM

I cried myself to sleep last night. I tried to talk myself out of it - but it wasn't working. I talked to Kevin and told him that Mommy misses him. I've been a bit upset these last few days. Little things hurt to think about and see. I was talking to Grandma the other day and I could see his picture on a table behind her head. I just wanted to start crying. Grandma told me that Kevin wouldn't have made it 2 years if it weren't for the love we gave him. But even though I loved him so much, it just wasn't enough. Then I start to think about all of those "what if's". That is frustrating. I think about things in the past that I can't change and things in the future that will never happen. And through all of this, we are moving on and making progress. I cry every day. But I don't cry all day. I think I would if I could get away with it - but I can't. I was starting to be able to speak to people about Kevin without crying when they ask about him. I can't seem to do that now. What is going to make this better? I don't know of anything that can make this better. Time? I feel like time isn't helping right now. I have to live the rest of my life missing my child. Kevin wouldn't want me to be miserable without him. But how can I not be? I want him here. I want to take care of him. I struggle to recall the warmth of his skin but have no problem remembering the coldness after he died. I've got to go. I can't see what the hell I'm typing.

Sunday, July 16, 2006 8:53 AM

I have added pictures of Kevin's grave marker on the photo page for you. The second one is huge. When I make the picture smaller, it loses the detail that I want you all to see. My sister is going to work on that for me. Of course, you are more than welcome to go visit Kevin and see it for yourself. If you don't know where it is, send me an e-mail and I will give you directions. I know he would love visitors.

When Nina had gone the other day she told me that his pinwheel was gone. I figured they had finally taken it away. Well, they hadn't. When we went yesterday we noticed that it was gone from Kevin's grave...but put on someone else's. Ya know, I really hope that maybe the caretakers of the cemetery found it laying on the ground or something and it blew over in that direction and they thought it belonged to a different grave. But I don't believe that to be the case because it was driven into the ground several inches at Kevin's grave. What makes me angry about someone taking it for their loved ones grave is the fact that they took it from a little boy. Duh - you can see his picture right there on his marker! I told Kevin that it was probably a mistake. But we took it back and put it where it belonged. Then I felt bad for the person whose grave it had been put on. Gee, I can't seem to win here.

I was looking back at Kevin's obituary listing on Pumphrey's website. It's still there. I don't know why I do that. I've done it more than once. It upsets me because it just reminds me that he's really gone. I think I like to see all of the nice things that you all say about our son. We miss him so much. Chris and I were talking about him while we sat at his grave yesterday. Kevin wasn't a complainer. He was so strong. I mentioned how stubborn he was. I told Chris that I just couldn't imagine where Kevin got that from. (smile)

I was talking to my sister yesterday and she had to have a minor surgery on Friday. She is really scared of getting an IV. (Ninny!) She told me that she drew her strength from Kevin while remembering all of the IV's he had endured. I'm proud that he was able to do that for her. I'm proud of all of the things he taught you all and the strength he has given to you and how he has opened your eyes and your hearts. He's done that to us too.

We love you Kev baby!

Friday, July 14, 2006 6:38 AM

I just went into my credit union account on line. I always check to see if Kevin's account is still there. The balance is zero because we gave the money to Gracie - but I always check to see if his name still shows up. It's stupid. I just keep clinging to little things to keep him around. I went in the house yesterday - everything was OK. I was feeling fine. But as soon as I opened the front door I started to cry. It sucks that he's not there waiting for me. I would always come home and he would be sitting on Nina's lap watching TV and he would whine and raise his arms as soon as he saw me. He was full of drama. He knew how to play me. He wasn't a dumb kid, that's for sure. I just don't want to let go. Not yet. Last weekend when Chris and I took the carpet out of the living room, he said that Kevin's toys are in the way and it's probably time to pack them up. His face was sad when he said it and he was cautious because he didn't know how I would react. (Don't worry, I didn't hurt him.) But I looked away and said, "The toys aren't in the way. They are off the side of the carpet." He knew it just wasn't time for me. I think he's not ready either. But if I said it was OK, he would go ahead and pack up the toys. So, the toys are still all around the perimeter of the living room. They came in handy when Gracie and I babysat the other evening. Four month old Eva. Such a cutie pie. Honestly, she did so well that my womb started talking to me. (So, we'll see what happens in that department.) I wasn't attentive enough when I was changing her diaper though - she peed on my couch when I was changing her. Gee, that's OK. I wiped up what I could and then I sat on it later on forgetting it was there and soaked up the rest into my pants. We played a Baby Einstein movie for her - Kevin's very first one - Baby Bach. It was like baby crack. She looked at it and hardly looked away. It was funny.

Nina said she was going to the cemetery yesterday to see Kevin's grave marker. I will take a picture so you all can see it. But you are all more than welcome to go and visit Kevin. You can always let me know you want to go and I will take you. Judy wants to go to, but she's sad. I'll go with her so we can be sad together. A friend told me that she is reading a very interesting book right now about Heaven and communication with deceased loved ones. She said that they can't read our minds. Our thoughts are interpreted to them but they can hear us when we speak. So, I've started talking to Kevin more out loud. I don't know why, but it upsets me so much more to speak to him out loud. I end up crying EVERY time. The book says that they are always with us. I tell him that I need him. I think he is with me when I get upset and start to miss him so badly. Chris and I sat and watched his video the other day. Of course we cried - but each time we see it there seems to be more smiles on our faces and more laughter. There will always be tears. I think I need to stop worrying about moving on and getting over Kevin. I just can't. I'm his mother. I don't want to. I think as long as we have a normal family life and personal life, we can keep crying and grieving for our son. And right now, 4 months after our son's death - that's what we want to do.

Our love to you all. Take care.

Monday, July 10, 2006

July 4th was fun. It was nice to see Kevin's gals. They got to see Kevin's memorial video. They all said that they didn't start to cry until the last song came on. They mentioned how nice it was to see him so happy. They had seen him happy in the hospital before - but not as happy as he was at home. I'm glad they got the chance to see Kevin like that. Julia is getting married next year so we gave her a little gift that belonged to Kevin. We gave her one of his blankets and a teddy bear. I just remembered the other day that I forgot to wipe down the bears arm before I gave it to her....the fur was "crispy" from Kevin licking it. (Sorry about that Julia!) It just makes it a little more personal huh? We had a good time at the girls house. I was introduced to some as "Kevin's Mom" and they knew who I was. The fireworks couldn't have been any closer. You could actually see at least 3 other fireworks displays in the distance from different areas. We left a little while after the fireworks were over. It wasn't late enough. It took us 45 minutes to get out of the parking lot and onto 95.

Wednesday night we left for the beach. In the rain. The entire trip was in the rain. Which of course caused traffic. It took us 5 hours when it should have taken us 3. Thursday was rainy too, so we went shopping and just hung out. Friday was the nice day and we got to hit the beach. Gracie found a couple of new friends to play with. She wasn't very close to us, but still close enough for us to keep an eye on her. I heard one little girl say, "Oh. How did he die?" I thought "Uh oh. She's talking to them about her brother." Then I heard the girl say, "I had a fish once. It died." I couldn't hear what Gracie was saying. I talked to her about it later briefly and she told me that she was talking to them about her brother.

I had asked my sister Theresa to contact the cemetery for me while we were gone. I wanted to have his grave marker checked on and for her to find out about a bench. She called me on Friday and told me that the marker was there, but not installed. They have had it since 6/22! I was glad that it was finally there. I don't understand why it is such a big deal to Chris and I, but it is. They also argued with her a little about the bench. I asked her to fight that fight for me. I just don't have it in my mentally to handle it. She understood. And she's good at getting those types of things handled. I'm just at the point where I would want to walk in there with an oozie. She mentioned how "uncaring" they are at the cemetery. She's right. You go from being coddled at the funeral home and by friends and family to these unfeeling assholes at the cemetery. They don't understand that it's not over for us - it's still the beginning.

We took Gracie up to the cemetery on Sunday morning like usual. I took another pinwheel for him because I just knew that the other one we left would be gone. It wasn't. I could see it from the road as we pulled up. I was pleased that it was still there. We took his balloon that Gracie got for him and walked towards his grave. And there it was...his picture on his grave marker staring back at me. Oh boy, I started to cry. I was so happy that it was there. It's just beautiful. Two deer ran by us and Gracie got to see them. She was so excited. She said it was Bambi and his girlfriend Feline.

That evening Chris and I decided to get the couch out of the house. It is sitting on our front porch waiting to be picked up. Our house has that redneck look now. Lovely. We also took up the carpet. That was foul. The part where Kevin had thrown up on 300 times was stuck to the floor. And the smell underneath....ick. I remember taking it out the door thinking "Kevin! You stink!" Now there is an echo in the living room.

Chris and I talked the other night. He's really missing Kevin - bad. He told me that he doesn't always tell me. I told him that I've cried myself to sleep every night for the last week (at least), and I didn't tell him. I don't want to bother him. I always get it out of my system eventually. We are going to try to talk to each other about it more now. I was telling someone the other day that I don't understand how this is supposed to get easier. How can it get easier when you just miss him more and more as each day passes? The heartache is still there and it's not getting going away - at all. I cried myself to sleep last night, again. I woke up remembering holding Kevin in my arms after he had died. I remember his face and how peaceful it looked. I can still feel him turning cold in my arms as each minute passed. It hurts. But I know it would hurt me so much more if we weren't there and weren't able to do what we did. I have to look at the positive side of things. But it's hard to always do that. People ask how I'm doing. I lie about 98 percent of the time. I kinda don't want people to ask me anymore so I don't have to say, "I'm OK." Because I'm not. That's a little rude of me to think that way. Or selfish? Sorry about that. You know me...I don't hold it in. It's just that I have so many different feeling every day. I'm up one minute and then I'm down the next. We're happy when we are doing something fun...but then we are sad because Kevin isn't there to enjoy it with us. It's such an emotional roller coaster. We have been on one for the last 2 and 1/2 years - it's not slowing down anytime soon.

You all take care. God bless.

Tuesday, July 4, 2006 1:51 PM

This is one of those days when we especially miss Kevin. We know that he would have liked to see the fireworks. He loved bright colors. Gracie and my nephews had colored and cut shapes for me to stick on the ceiling and walls when Kevin came home. I took down the ones on the wall just the other day. I can't reach the ones on the ceiling. I have to stand on the couch to do that - I guess I could...I just don't want to. Gracie noticed immediately that they were gone from the wall and asked me to keep the ones on the ceiling because it was Kevin's. I need to take them down. Speaking of the couch - that is going also. It's old and Kevin has christened it with every bodily fluid you can imagine. It's been cleaned many, many times. It was our first couch. It's going to be a little difficult to let it go because Kevin spent SO much time on that couch - but it's just a couch. We can't hold on to everything.

Gracie had a bad night last night. I'm glad I didn't have to get up for work this morning. She woke up screaming at 3am. It was a loud scream. I told her that I was there and she settled down. But she was VERY clingy for the rest of the night. She was awake until after 4am. She mentioned this morning that she had a scary dream, but she won't tell me what it was. I've asked a couple of times, but she won't say. I'm not going to force her. She'll probably forget about it by tonight (I hope). I woke up crying myself this morning. I'm just missing Kev. I don't understand why the sad moments keep running through my mind over and over, rather than the happy moments. I have to force myself to think of happier times. Sometimes I close my eyes and try to remember the warmth of his skin against my lips when I would kiss his forehead. It hurts to know that I will never have that again with him. As a mother, you just yearn to touch your child. I can't touch him anymore and it breaks my heart. Some days I do feel myself getting along better than others. But it's not long lived. I end up feeling guilty that I'm feeling better. I don't know why. I know I need to let my heart heal a little bit.

We are going to the beach tomorrow night for 2 days. Gracie hasn't been since I was pregnant with Kevin. She was 1 year old. (And she didn't like it.) Hopefully she will find the sand enjoyable this time. She is very excited about going.

We are going to Baltimore tonight to enjoy the fireworks with Kevin's gals. We are looking forward to seeing them. I'm not sure if I will have the chance to update before we leave for the beach. If not, I will write in on Monday morning or Sunday after we get back from the cemetery. (Gracie has a special balloon for Kevin to leave there for him. It's Winnie the Pooh hugging Piglet and it's on a stick so we can put it in the ground on his grave.) You all take care. God bless.

Monday, July 3, 2006 6:46 AM

Gracie and I were in the car the other day and "What a Wonderful World" by Louis Armstrong came on. Gracie said that it was one of Kevin's songs and it made her sad. I asked if she wanted me to turn it, but she said 'no'. (For those of you who weren't at his viewing, it was one of the songs that played on his tribute video. The others were "Hot Potato" by the Wiggles and "Wind Beneath My Wings" by Bette Midler. I was thinking about him on Saturday when I was driving. I was thinking about his funeral. Then I turned the radio station and Wind Beneath My Wings was on. How weird. Gracie said, "Stop - that's one of Kevin's songs. I want to listen to it." She tells us how much she misses him. She will bring it up out of the blue. When I go to bed crying, the next morning she will ask if I'm still sad. The nights are harder for me than the mornings.

We went to the cemetery on Sunday morning. I was thinking how nice it would be to go and have his grave marker installed. It would be a nice surprise - but I knew it wouldn't be there. And it wasn't. We sat and visited with Kevin for a little while We had colorful roses for him. Red, white, orange and yellow. They were very pretty. Of course, we had to share with Helen. She had only a stem there from the last rose we left. (I think we need to spend our money on deer feed instead of flowers. It's probably cheaper!) But, the roses were so pretty laying there on his grave. We also put one of the spinwheels there. As we were walking away, I looked back and it was so nice and colorful. I'll be so happy when that marker gets put in and we have a vase there to use.

Well, I better run, I'm a little late today. You all take care and have a wonderul holiday!

Friday, June 30, 2006

I keep looking at his pictures and remembering how soft his hair was and how it smelled. I sure hope that never goes away.

We don't really have any plans for the weekend. We were invited to a party on the 4th. So we will be going to Baltimore to watch the fireworks with Kevin's JHH girlfriends. We are happy about getting to see them.

Gracie was just laying down in bed last night and she said, "When I die, Kevin will be so happy to see me again." I told her that he would. She also said that it will be a long time before she goes and she will be old. But I told her that Kevin is watching her every day and will be until he does get to meet her again in heaven. Some people don't want to explain death to their children because they don't want to scare them. We had to explain it to Gracie early on because of what might happen to her brother. She's not scared. I think knowing that he is there waiting for her really helps. I also tell her how wonderful it will be. She did get upset one day because she said Kevin didn't want to come back. I told her that he just couldn't come back and God needed him. A grandma told me that Kevin is playing with other children now, including her own grand daughter. I never thought of that. I always thought of him being with other family members and friends that have passed before him. It makes my heart happier to know that he is also with other children. I don't know why it never occurred to me.

Chris and Gracie are doing well. We're chugging along trying to get used to our life without Kevin. Although he is still much a part of our everyday life in our minds and hearts. Chris is dealing with me and my mood swings. We both go through them. But we understand what each other is going through which makes it tolerable. I think we'll be ok.

We hope you all have a wonderful weekend. Take care.

Wednesday, June 28, 2006 7:10 PM

Well, I've decided to go ahead and keep adding charms to my Kevin charm bracelet. So far I have 3 (my cross that I've been wearing since the December after Kevin was born, a little angel and the birthstone baby that Chris gave me.) I just got another little square birthstone charm and I have purchased another little angel charm. I found one that said "Mommy's Angel", but it's for a necklace and is too big for my bracelet. This bracelet is already special to me, so adding some more charms that are sentimental will make it even better. I was wondering today if they would bury me with it or if Gracie would want to keep it for herself and pass it on. Then I thought, "You idiot. Why are you thinking that far into the future." I guess I just want it to mean as much to my family as it means to me.

Well, Gracie got me to go into Kevin's room last night. We were getting ready to go upstairs to bed and she said that she wanted to sing him a lullabye before bed. OK...she said that we had to go into his room to do it. Fine...so she went and sat on his bed and put her hands where he used to lay. Then she turned on his crib toy that played music and she hummed to it. Then she said that he wanted a hug from me. So I gave him one. Then she said he wanted a group hug from both of us. So I did that too. She asked if I was sad. I told her that I just missed him so much. I know she understands. She misses him too.

I've been doing a bit better with falling asleep. I still need my pills, but at least I'm not crying myself to sleep every night anymore. It's more like once a week or so.

I was talking to another Mommy today. Zachery's mom. Zachery passed away in January. He didn't have AGS. She said that someone told her to get rid of her son's things since seeing them made her sad. She's not ready. I don't blame her. I'm not ready either. It just kills me to go into Kevin's room and see his empty bed. I've talked about taking it down. But you feel like if you take their things away, that you are trying to forget them. We are hanging on to what we have left of them - physically. But it hurts us to see these things around the house also because it reminds us that they are gone. It's probably hard for you to understand it. But I don't really want you to understand it. Because to understand it, you will have to hurt as much as we do. And I don't want that for any of you - ever.

There's another little AGS girl, Sasha. She was two also. I had chatted with her mom a few times. She was a cutie. She reminded me of Kevin. (A lot of these kids have the same facial features.) The last I knew, she was having some trouble recouperating from heart surgery. I saw her name on the AGS website and clicked on it. The tears started to roll down my face as I had read that she died last week. She died peacefully at home with her family. Less than 12 hours later, her mother gave birth to her little sister Mia. I can't imagine. I just can't. So many different emotions. I saw that someone had told her Mommy that at least she had another child now to replace Sasha. I don't know how she kept from knocking them upside the head for saying that to her. Even if you have 12 more kids, you can never replace your child that you lost. Lots of Mommy's are in my prayers. It's such a rough road. Lord, please give them strength.

Well, I'm going to sign off now that I'm a bit bummed out thinking about these other kids...you all take care.

Tuesday, June 27, 2006 6:21 AM

Chris and I went to see Kevin on Sunday like we normally do. The rain stopped long enough for us to visit with him. Of course there was a butterfly around us most of the time. It went away. I was standing there next to Chris thinking to myself, "I wish that butterfly would come back." As soon as I thought that, it came fluttering by, right between Chris and me. I grabbed Chris' arm in amazement. No, it wasn't Kevin...but I think it's a little sign for us that he's there. While we were there, Chris said that he thinks that Kevin misses us. I started to cry. I told him that I didn't want Kevin to miss us because that would mean that he's a little unhappy and I don't want him to be unhappy. While I was standing there, a picture of Kevin's heart monitor came to my head. I remember it so clearly that night he died. I remember watching the numbers plummet. I turned away at 67 bpm and cried out Kevin's name. The monitor was turned off by the nurse before it got to 0. They say there are stages that someone goes through for grief. I believe I've hit them all and am making another round. Actually, it's almost a daily change. At times my temper is my normal laid back self. Other times, it is way off. My patience is also lacking at times. I still cry every day. Sometimes it's much worse than others. I don't want to talk to someone to see if I'm normal...it doesn't matter. I'm going to go through this no matter what. I'm going to feel how I'm going to feel and that's that. If someone tells me that I shouldn't be a certain way it won't do any good.

I'm going to make another effort to get a bench put there at Kevin's grave. It's right by a tree and would fit right in. I won't let it go as easily as I did the last time. Kevin wasn't gone the last time. Now I will fight harder and even go to the CCAW directly. Should I call on one of my good days or bad days? I tried being nice before and I didn't get anywhere. I wonder if I should call when I'm crabby? It's been 5 weeks since we approved the final proof of the headstone. That should be coming in soon. It gives me something to look forward to. I will like being able to prop up Kevin's roses in a vase rather than leaving them spread on the ground. I shared one of his roses on Sunday with Helen. Helen is next to Kevin. She never has any flowers. The rain is really taking a toll on some of the graves. One person's was about 3 inches under water. And that was before we had the additional 5 inches yesterday. It got us a little upset. I would hope that they would pull up the marker and put more dirt under it so that doesn't keep happening. I know I would complain if it were Kevin's site. I guess I can complain if it isn't too, huh?

I hope you all have a wonderful day. You all take care.

Friday, June 23, 2006 6:24 AM

My night didn't seem to get too much better. After Gracie went to sleep, I stayed up and watched a documentary on PBS called "A Lion in the House". I had missed part of the beginning, but I caught up quickly. It was about different children that had cancer. Chris knew that I was watching it and told me that I shouldn't. I knew that. But I couldn't help myself. I related with what those parents were going through. And I wanted to see how the children did. So I kept watching.

Alex was 8 and she had leukemia. Justin was around 17 and I don't know what kind of cancer he had. Tim was 14 and had cancer in his throat/lymphnodes. There were 2 other children, but I don't remember their names. They were cured. It made me a little sick to my stomach to watch these parents get called in to that little room that they have in every PICU. That room where you only hear bad news. The doctors words were very familiar. "There's nothing more we can do." "I don't think that going any further would be fair at this point." "He doesn't have much longer." "We will do what we can to keep him comfortable." They tell you to let go. It's not so easy to do when you are put in that situation. Chris and I fought letting go until we knew we didn't have a choice any longer.

I watched with excitement when I heard that Alex's white blood cell count had gone up after receiving some of her father's white blood cells. I knew that kind of excitement when you think things have turned for the better. The show ended at 11pm Wednesday night. It came on again last night, but I had missed part of it. I had missed Justin's and Alex's deaths. When I turned it on. it was Alex's funeral. She looked different. She wasn't the same. Just like Kevin. They don't look the same. Her father spoke about her last moments and some regrets that he had. Decisions that would haunt him until the day he died. I wanted to yell at the TV to tell him that he can't do that. But it's easier said than done. I am having the same problems myself. Then the movie caught up to them 3 and 6 months later. Alex had a little sister who in a way, was enjoying being an only child. She had played second fiddle for so long, she appreciated the undivided attention now. But she said every day that she missed her sister. The parents were doing a bit better. She said that people ask if they are back to normal. She had the same reaction as me to that question...they will never have normal again. Normal for them was gone the day their child died. Normal is having that child alive and with you every day. Normal will never be.

Then there was Tim. He was so determined to fight his cancer. I felt for him when the doctor told him that they were out of options. I felt for him because he had a mother that couldn't handle it and didn't want to realize that he was going to die. He asked for her constantly and she wasn't there for him. He was alone. He had special nurses that loved him and they called a meeting with the other staff members and doctors. They talked about getting him nursing care so he could go home to die. It wasn't possible. There wasn't enough time. Then they talked about getting the mother in and confronting her with the situation and getting her to understand the severity of what was going on. They did that. I saw the moment that Tim's mother finally understood and accepted what was happening. I was happy to see how the doctors consoled her in that time. Chris and I didn't have that. Those doctors loved her child and really cared for her too. It showed. So, she was there for Tim after that. So was the rest of his family. They stayed with him and I know he felt better about that. The next thing that was shown was a woman from housekeeping taking the sheets off the bed and cleaning the room. Tim was gone. It happened so quickly -just a couple of weeks. It also showed his funeral. He looked the same as Alex. Although one was a little caucasion girl and the other was a brown teenage boy - they looked the same. I cried for both of them and I cried for their parents. At Tim's funeral the pastor said that everyone has the same question...and I said "Why" out loud at the same time he said it. But he said that the question we should be asking is "What?". What do we do now? What change do we make to our own life because of the death of our children? We go on because we have to go on. We can't let their deaths be in vain. These kids change lives. Kevin changed many in his 2 years. Don't you all appreciate life more now? Don't you not take anything for granted? Don't you tell your loved ones how much they mean to you? Don't you see beauty in things that you didn't see before? You do...because Kevin touched and changed you too. All of these children were blessings. I'm so sorry that so many parents have to go through this pain.

You all take care and have a wonderful weekend. Our love to you all.

Wednesday, June 21, 2006 6:07 PM

I seem to be going through a crabby phase right now. Not the whole day today...just right this moment. A certain little somebody is driving me nuts. I don't know what the problem is. Is it her age? She is mouthy, rude and most of all...whiney. I call her "Whiney the Pooh". I don't know if she was this whiney when Kevin was alive and I just didn't have time to notice it or what. But these past couple of months since he passed away she has really changed in that aspect. It's almost constant. Honestly, it's driving me nuts. But for some reason, I just can't seem to handle it right now. So, I'm taking a break and sitting down in the basement by myself, talking to you all. I want ice cream really bad. I've been wanting it for about a week now, but never got it. Do you think it's stress? The lucky people lose weight when they are stressed...I'm the opposite. That's why I'm the size of a hippo right now. I have been able to handle so damn much these last couple of years...why am I stressing out right this moment? No, I don't have PMS. We just got back from Karate class for her about 30 minutes ago. She didn't participate in class. She just sat there doing nothing and staring at me while the instructors were talking to her. Then she came and sat with me and wanted to come home. I wasn't doing that. I had her sit there and said that she could participate at any time when she wanted to. Finally, with 5 minutes left in class, she wanted to. They were playing Karate Dodgeball. They never even hit her with the ball and she came over whining to me that it was too hard. I'm taking her back next week. She will just have to sit there and watch if she doesn't want to participate. All of the other kids were having fun. I just don't know...

I've been reading that book a friend gave me about children's near death experiences. I haven't been able to get too far because I just don't have the time. But from what I have read so far, I'm happy for Kevin. Heaven sounds like such a wonderful place. I know he is happy now. Happier I should say, because he was happy here with us. Oh boy, now I'm starting to cry. I miss him. Maybe that has something to do with the way I'm feeling today. Sometimes I just hold it all in to the point that I can't any longer. I feel like I'm bipolar or something. I'm fine one second and then I'm a soppy wet mess the next. I was thinking about when Gracie gets older and she is old enough to understand everything that her brother and her father and I went through. What is she going to think? Is she going to think that it was a crappy 2 years for her? In Karate class I was wondering if I've done something wrong the last 2 years and 4 months. Did I not do something right with her because I was so busy? What could I have done differently that maybe she would be socialized better? I had one VERY strong, determined little guy and I have another who can't handle a fly landing on her arm without crying about it. I'm tired. Maybe that's my problem right now...I'm just tired. I'll get to bed a little early and tomorrow will be better. I'll just start over again...and try to have a better attitude.

Kev baby, Mommy misses you. Mommy cries for you each and every day. I just wish I could hold you in my arms again and snuggle you close to me. Do you know how much Mommy and Daddy loved you? You were so young. Could you understand the magnitude of the love we have for you? Maybe since you are gone now, maybe you have a better understanding as you watch us cry for you. I have so many different emotions when I think about you and your short life. I get confused. I wonder if I really did a good enough job. I get angry, frustrated over everything you went through. All of the unnecessary pain and discomfort. I'm so sad that you are gone. Taken away from me too soon. I'm happy and grateful for the good memories we have of you. We were blessed to have you. Mommy just seems to be a big fat mess without you. I'm getting through this only because I have no choice in the matter. Please ask God to make this a little easier on Mommy Kevin. I need my mind to be at ease and I just can't do it. It's just too damn hard.

Tuesday, June 20, 2006 6:26 AM

Father's Day was nice. It was so stinking hot though. We went to the cemetery in the early evening. We were able to leave his pinwheel there this time. I always ask Kevin to help Mommy get through this whenever I'm there at his grave. It's so hard on all of us. We miss him so much.

My sister needed a chair for her TV room so we let her have the one that the nurses used in Kevin's room. I don't go in his room hardly ever. I just can't seem to handle it. If I do need something, I will step in, but I won't look at his bed. It upsets me too much. But last night I did go in and I told myself not to look over there. But I did. I stood there and stared at his empty bed, still covered with blankets, ointments and his last pair of pj's that he wore at home. I walked over and put my hands in the spot where he used to lay and I cried. I knelt down there and rested my head on his spot and I cried for my baby. I talked to him and told him how much I missed him being there. I pictured him laying there sleeping peacefully. I think the bed should come down. But I don't feel right about it. I feel like if I take his things away, then I'm trying to forget him. I know that sounds stupid - but I just can't do it yet. Neither can Chris. I guess having his things sprawled all over the place makes us feel like he's still there. That's also one reason why I'm not ready to have more children....I don't want to feel like I'm replacing Kevin. I could NEVER replace him. But I don't feel right having another one just yet. Maybe because it will take my mind off of missing him so much - and I'm not ready to not miss him that much. I think I would feel a little guilty about it. That's stupid too. If Kevin hadn't been sick, we would have had another one by now. What's the difference? Kevin would want us to have other children. It's just not the right time for me if I'm so up in the air about it.

Well, I better get a move on here....you all take care and have a great day.

Sunday, June 18, 2006 8:33 AM

Isn't it beautiful? Amanda from NC drew this for me. I found her on the web. Chris LOVED it. I stare at it all the time. I put a smaller version of it in a little frame for Chris. We don't have the original sketch just yet.

We are having a little cook out today at lunchtime and then we will be heading to the cemetery. I got pretty white roses for Kevin today. I have a thing for roses when it comes to him.
I think it's because roses seem to be the best and prettiest.

Chris and I headed out to Davidsonville yesterday to go to the nursery where we had a credit from Nana's co-workers. We got everything we needed for his garden. He has lavender (it smells so good and it hasn't even bloomed), bearded iris and tall iris. And we got a little bird bath for his area. When we got home yesterday and I set it up, there was a bird sitting on the fence staring at me. I said, "Hey, gimme a break. I'll fill it with water in a few." He was pressuring me. So, we put everything in the places that we want - but we haven't planted it yet. We need to get mulch and potting soil to mix with the dirt. It should all be in place soon. It will look a little bare at first, but the plants we have will multiply (so we were told). I will take a picture and post it once we get it finished.

I hope you all have a wonderful Father's Day today. I know Chris will. I'll do what I can to make it the best for him. You all take care.

Friday, June 16, 2006 6:13 AM

My spirits are a little better today. I've been getting more sleep (since I slightly increased the amount of my sleeping pills.) Since I'm feeling a bit better, I will go ahead and go back to my normal amount tonight. Chris and I get to step out tonight to a party down the street. I don't think we've done that alone in years.

My doctors appointment went good (except for my tears.) He asked if I was "over it". I looked at him funny. He said, "Well, I know you will never be over it. I mean are you feeling better these last couple of months. Is it getting better?" I told him (through tears) that it was getting better, but I've just had a few bad days recently. My blood pressure is the lowest its been in over a year. And I have lost 20 pounds so far since I started back to work on April 10th. Gee, only 90 more to go....piece of cake! (Ummm....cake....this is going to be tough.) He said that I don't have to come back to see him anymore for follow up. I just need to monitor my blood pressure at home once a month and keep losing weight. After I left, I was looking at my receipt. He had marked off 'depression' on it as my diagnosis. I never really thought I was going through depression. Just bits here and there. But I guess he's right. It doesn't really matter to me. I have my ups and my way lows. Its more ups these days than lows, but I will have those lows for the rest of my life. I expect that and I accept that.

We will be working on Kevin's garden this weekend (but Chris doesn't know that yet.) Nina and Mom said that we should put lavendar in it. Isn't that a great idea?! Kevin always smelled like lavendar. It's going to be so nice when we are finished with it. I'll have to take a picture and post it for you all.

I wanted to also brag about Judy (our neighbor down the street who helped with Kevin). Judy will be a volunteer for respite care. Respite care is someone who comes to your home and watches your loved one while you take a break/vacation. Families need that. Judy said, "It is really because of Kev that I feel the need to do this. People are so caught up in their own lives and don’t think about others enough. My little boyfriend (your beautiful son) opened my eyes and my heart. I could never thank you or him enough." I've been thinking myself about getting an LPN license so I could watch children part time later on. It is extremely difficult to find someone dependable and caring enough to watch your loved one. I know I could do that and do a good job at it. I want other parents to feel at ease and be comfortable with someone in their home. I didn't always have that. It's so important. Anyways, I think Judy will be excellent at doing this. She was great with Kevin. Thank you Judy.

I will be posting a new picture after Father's Day. I can't do it yet because it is Chris' Father's Day present. You all are going to absolutely LOVE it. I hope all of you Dad's have a great weekend and special day. We will be with both of our children on Sunday. I bought some more pinwheels to put on his grave (for back ups.) Chris gave me a Kevin gift yesterday. It is one of those birthstone babies. It is a little oval November birthstone with a little head, arms and legs. It will complete my Kevin charm bracelet. It was very thoughtful.

Our love to you all. Take care.

Wednesday, June 14, 2006 6:20 AM

I went to the cemetery yeserday morning. I stopped at the grocery to get him some flowers. I've been stopping at least once a week for the last 3 months. But this time, on one of my worst, darkest days, the grocer asked what the special occasion was for the flowers. I said, "No special occasion. I'm going to the cemetery." He said, "Oh, my Dad is buried at (someplace) in Frederick. Who are you going to see?" I told him that I was going to see my son. I figured the conversation would stop there since it isn't something that is a good conversation topic. But he said, "Oh...how old was he?" I said that he was two. Then I took my change and told him to have a good day. He told me to keep the faith. I'm trying. And I think I do have faith - I'm just miserable right now without my son.

I got to the cemetery and someone had just been buried two spaces down from Kevin. It was done that morning because the flowers were fresh and hadn't been eaten yet. Kevin had stems on him grave from the roses we left on Sunday. I wanted to sit down...but he was wet! They had watered him. His grass isn't coming in all the way so I guess when they watered his new neighbor they watered him too. So, I stood there and cried. I talked to him. It was my first time visiting him alone. It was OK. I really needed it. I told him how much I missed him and missed taking care of him. I told him that I was sorry. And I asked him to help Mommy get through this because I'm not doing so well at it.

I feel like every moment in my family's life will have a touch of sadness to it. "I wish Kevin was here" will always be in our minds. Even though he will be there in spirit, it just won't be the same.

Chris is trying to help me through this and is a bit upset himself. He doesn't want to see me like this. But there really isn't anything he can do. Just be there for me when I cry. But me feeling sad makes him sad too.

I go back to the doctor today to get my weight and blood pressure checked. (Oh joy.) I'm going to keep my shoes on this time and then ask him to deduct the weight of the shoes from my total. Ten pounds sounds about right to me - don't ya think?

I appreciate everyone thinking and caring about us. I don't mean to worry everyone. I'm just expressing my emotions. It helps me out. We will get through this.

Our love to you all. Take care.

Tuesday, June 13, 2006 6:07 AM

Not a good night for Mommy. Definitely not a good night. And it seems to be dragging over into my day. I was fine at first. I too my pills and went to bed. Two minutes after my head hit the pillow, I was in tears. Not my normal tears. I was sobbing. I woke up Gracie because I was crying so hard. (Great, I'm crying now too.) Then I took two more sleeping pills. Chris came to my side to comfort me. I was unconsolable at first. I didn't say much. I was hurt and I was angry. I told Chris that I honestly thought God would see how much we loved Kevin and how good we took care of him and know that it just wouldn't be right to take him away from us. I thought He would let us keep Kevin. But He didn't. How can He need Kevin more than us?

I will be taking some time this morning and going to the cemetery. I think I need to today. It won't make me feel any better at first. But I want to go. I just feel closer to him there....

Monday, June 12, 2006 6:04 AM

He is the last thing on my mind when I go to sleep and he is the first thing on my mind when I wake up each morning. I guess that’s why I’m always crying myself to sleep or in tears as soon as I wake up. Saturday I woke up crying. I had been thinking about writing a letter to Dr. Schwarz to let her know how much we appreciated her taking care of Kevin. She went above and beyond for that little boy. Then I remember my last conversation with her shortly after Kevin had died. She had told me that his passing was inevitable. I felt like a fool after remembering that part of the conversation. They all told us. Several times in fact. We listened to them at first – but then we stopped. Our son was going to live. I truly believed that our son was going to make it. What did we look like to these medical professionals? We were fighting for a lost cause and didn’t even know it. Then I think of the PICU doctor in CA. He knew it was going to happen. And he was actually a bit arrogant about it. He was frustrated with us because we didn’t believe him. Kevin always pulls through. Even after Kevin died and I was sitting in his room holding his lifeless body in my arms, the doctor made it a point to let me know he was right. You don’t know how badly I wanted Kevin to prove him wrong.

Saturday night I didn’t sleep so well. I dreamt about Kevin a lot. I dreamt that we were in CA the day after Kevin died and we were getting ready to leave. Then the hospital called us to tell us that they had made a mistake. Kevin hadn’t died. He was just so tired that his body seemed like it was dead. Like a battery that went low. I remember going back to the hospital so happy (and pissed off that they did that to us), he was still in the morgue. But when we got there, he put his arms out for me to pick him up. It woke me right up. I sat straight up in bed. I still wasn’t with it. The very first thing I thought of was “Man, Chris went to 7-11 for coffee and I need his help to give Kevin a bath! Now I we have to wait until he comes home and Kevin is very dirty.” I thought Kevin was down in his room. It only took me a few seconds to remember that he wasn’t there. So I got out of bed and got in the shower and cried some more. I sobbed actually. The shower is the best place for that – it doesn’t bother anybody because they can’t hear me.

We went to the cemetery on Sunday like usual. We stopped and I got some roses for him first. I don’t like the smell of the floral area. It reminds me of the funeral home. We also took a pinwheel for his grave. Yes, I know we aren’t supposed to put those kinds of things there. Actually, we didn’t leave it there. They were getting ready to bury someone 2 spots down from Kevin so I knew that the caretakers would see his pinwheel and remove it. So, we put it there while we were visiting and took it with us when we left. I told Kevin that we would bring it back so it could stay longer next time. You know how Mommy is. I laid on the ground next to his grave. The sun felt so warm on my face. Chris and I were recalling our memories of Kevin. Peek-a-boo is our favorite. I see his little fingers spread out over his eye so he could still see you through them. God, it hurts. I have never, ever felt such a pain in my heart. I know it will never, ever go away.

I miss you baby. More than you know.

Friday, June 9, 2006

Someone gave me a book that I want to read this weekend. It's a book about children who had near death experiences. A child is so innocent and doesn't have any preconceptions about death and dying. So hopefully it will make me feel a little better about our situation. I was on a website about parents who believe their children have contacted them somehow after they had died. This one in particular wasn't about contact afterwards, it was about what the little 4 1/2 yeaar old girl saw before she died of cancer:

One night she rang her special TinkerBell bell and I went into her room, she said to me, "Mommy do you see them?" Thinking she was hallucinating, I turned on the lamp by her bed. Her eyes were wide open and she said to me again, "Mommy do you see them?" I answered, "Who" She said "the angels." I said, "Where are they?" And she said, "There's one there and there and there and there." Indicating each corner of her bed. Each one had different colored hair, Vicki was very detailed about their description. Then she pointed to the foot of her bed and said, "He is right there." I asked who?, she said, "Jesus, and he is holding out his arms for me to come to him. But I am not ready yet."

She was in and out of the hospital many times during the eight months. The last time she went in the hospital we knew she would not be coming home with us, but going home with her Heavenly Father. At the end she asked me again, "Mommy do you see them?" I said no honey, she said, "well Jesus is here and He is holding out His arms again, I think I will go with Him this time cause I am really, really tired." Those were the last words she spoke, then she went into a semi-coma and a few hours later she went home with Jesus.



I think it's just beautiful that things like that happen. I wish Chris and I were touched in that way when Kevin left us. I guess in a way, we were. After Kevin died, we both had a peace about us. The tears had stopped for a while. We were able to quietly spend those last moments with our son. I think God also gave us the strength to make the decision to let him go that night. It was an instant decision for us. As soon as we knew that he was uncomfortable we knew it had to stop. We won't ever forget that day. Speaking of, we just received the amendment to Kevin's death certificate. I thought it would be just like the first one, but it would have his middle name on it. It's not. It is another certified copy of the first one with a second page that has an amendment to that specific line item. Oh, well. I guess it doesn't matter in the big scheme of things.

Gracie received a gift yesterday. A Mommy who lost her son at 6 weeks old sent her a bear. It has stitches on it's chest and a heart sewn on. Gracie knew what the stitches were immediately. She said, "Oh look Mommy. She has a boo-boo on her heart just like Kevin." Then she went into his room to get the stethescope. She listened to my heart, her own heart and then the bears heart. She slept with it last night. When I woke her up she was laying with her head on its chest. I hated to wake her because she looked so cute.

We are partially done with Kevin's garden. Nina got the weeds up for us one day and then Chris planted a lilac bush some friends had given us. The lilacs bloom in March which is special because of Kevin's Heaven Day. Nina also had given us a little angel statue that we have put there. We are going to get some more plants (hopefully soon) to put around that area too. Maybe that's something we can do tomorrow. Then Sunday is always the day we go to visit our boy.

Our love to you all!

Wednesday, June 7, 2006

I'm tired. I didn't sleep well last night. I miss my boy. I miss him laying his head on my chest. I miss the softness of his hair rubbing against my cheek. I miss his smiles. I miss seeing him close his eyes every time he giggled. I miss those raspberries. I don't understand why God needs him more than me.

I was talking to another Mommy last night. Her name is Michelle. She lost her 2 year old little boy in January this year. It was nice to have someone that I can relate to as a mother with such an enormous loss. We validated each others feelings and talked to each other about our sons and experiences. We also talked about their last moments. She did the same as me. Just held him until his body grew cold. She was lucky to have family there with her. They were also able to say goodbye to him. Chris and I were alone and so far away from home. But I guess we were all each other needed at that time. Nobody could have made it any better for us. We were numb leaving that hospital in the wee hours of the morning. We didn't want to leave him there. Then it was harder to leave CA without him. I had a hard time leaving him at the cemetary too. All alone. He always needed someone to watch him. It felt so wrong to leave him by himself.

Michelle and I reassured each other that our children are happy where they are now. Even though you lived your life for that child, and they are gone, your life still has to go on no matter how hard that is to do. Our children wouldn't want us to be so unhappy. They knew how much we loved them. I think I squeezed more than a lifetime of love into Kevin's short 2 years.

I find myself going in to his room and opening the little heart shaped yellow box we brought home from CA with us. Kevin's hand and footprint are molded in that box from after he passed away. I stroke the indentation of his little fingers and toes. Oh, how I long to hold his little hands in mine. Just one more time. But they say, that would just leave you wishing for one more time again and again. I know I would never get enough. You can never have too many hugs or too many kisses.

You all take care. We love you.

Wednesday, June 7, 2006

Sunday, June 4, 2006 7:52 PM

We just got back from the cemetary. It is a beautiful evening. I bought some flowers that I don't think the deer eat. They are Gerbera. If I remember correctly, when I get them in a bunch of wild flowers that those are left after the deer come to have their snack with Kevin. I got red and white. Chris and I were talking a little while we were there. I asked, "You know how bad things happen to other people, not you?" Even when it is bad things happening to other people, that bad thing isn't losing a child. We don't know anybody who has lost a child. Why us? Why our Kevin? As Chris was giving me a hug, I noticed how pretty the sun was. It seemed like it was shining down just on us. Then a flock of birds flew by, way up high. It was pretty. I felt warm.

We finally got a chance to take Gracie to the carnival last night. We didn't get home until midnight! Gracie had loads of fun. But Chris and I both had thought about Kevin. How much fun he had when he went last year. And you can't help to think about him never getting the chance to do the things Gracie was doing. We saw brothers and sisters holding hands and going on rides together. They won't have that. Gracie did win a toy for him. She picked out a dolphin. She layed it on top of the flowers on his grave today. There are a lot of things that Kevin wasn't able to ever experience or have Gracie experience with him. That means there are a lot of things that Chris and I are also missing. We think about those things often. Actually, more than often..constantly.

Here is a poem that a parent wrote about losing their son after a routine tonsillectomy. It seems to fit the mood for today.


He wiped away the snow
and laid down a single rose.
Thinking of what might have been,
and pain only the bereaved knows.

Another tear falls in a garden of stone.....

He could have been president,
a ballplayer or won a Nobel prize.
But it'll never come to be,
and we'll never look into his eyes.

They said it was routine,
Don't worry, we do it every day.
But something went oh so wrong,
now they don't know what to say.

Another tear falls in a garden of stone.....

We watched the tubes and wires,
and they said that he was gone.
A life snuffed out too early,
never to see another dawn.

Another tear falls
in the garden of stone.
Another day passes
and they're all alone.

The world gets older
but he's still two.
And we dream of things,
he'll never do.

He'll never ride a two wheeler,
Or take a bus to school.
All we have are our memories,
we've lost our precious jewel.

Never play in little league
never steal a first kiss,
We think of all those things
he's going to miss.

Never go to college,
never walk down the aisle,
Never know the joys of parenthood.
we miss him all the while.

Another tear falls in the garden of stone.


Michael Kaner


Here's another that I read and liked about a 2 year old that lived with illness his entire short life:

Your hearts are breaking-I know, I can tell.
Because you're my parents and I know you so well
As hard as this is, there's something I need to say
I don't want to linger, don't beg me to stay
Keeping me here only gets in my way
Prevents me from being where I want to be
Out of this body and finally pain free
Living with God is my ultimate goal
By taking me home He is making me whole
The only thing holding me back, Mom and Dad,
Is thinking of you and the good times we had.
You fought for me when no one else could,
Refused to give up when others told you you should
You packed a whole lifetime of love in (two) years
Gave me strength to handle all of my fears
Showered me with courage-you said; "It's a loan"
While secretly hiding tears of your own.
You've done everything I needed. I couldn't ask for much more
Please love me enough to help me pass through that door.
I know you are sad and it doesn't seem fair
But the time has come to put me in God's care
Since I started the job I was sent here to do
And planted a seed now residing in you.
I'm sure I can trust you to carry my load.
Please love me enough-enough to let me go.

Thursday, June 1, 2006 6:01 AM

I finally got through a shower last night without crying....but I cried as soon as I got in to bed. There are so many things that go through your head in times like this. Unfortunately, I try to push them away so I can rest or get back to whatever it was I was doing. I don't want to push it away. I feel like I'm pushing his memory away - whether it is a good memory or a bad one. Both make me cry.

I sold Kevin's pulse oximeter on ebay this weekend. The money helped out with our mini vacation. In a way, we don't want to part with it. Chris and I are clinging on to this personal items still. Toys, clothes, bed, etc. After I sold the pulse ox, I needed to get the strap for it. It was in his room upstairs (not his den room). His clothes, crib toys, stuffed animals etc are up there. I sat in the rocking chair and just cried for about 15 minutes. I kept smelling different items of his. But his smell was gone. He received a bear from INOVA Fairfax after his first heart surgery. I had forgotten, until I came across it in his room. It made me remember how far he had come and how much he had gone through. God, he was so strong. I am too - but in a different way. I don't think I could ever go through what Kevin did. I know I couldn't. When I was getting my pedicure on our vacation, the girl asked me if Kevin suffered. I quickly said that he didn't. I explained that he did have pain from needle sticks and tests - but it was fleeting pain. I told her that he was in pain on his last day and that his father and I made sure that pain ended for him. (Although it tore our hearts apart because it meant losing him.) I had problems after Kevin died because of people telling me that he suffered. He did - at times. But I don't feel guilty anymore for causing it. And I can honestly say that his life was not full of pain like some people have thought. I didn't fully believe that after he died. Chris and I would never do that to our children out of selfishness.

Have you ever taken some time and looked back in the past journal entries? I have done that a few times. It's just amazing to me all that we went through. All that Kevin went through. All that he accomplished. (Peek-a-boo pops into my head.) I remember when he first started to do that. Every time I would call to Chris or Gracie to ask where something was, as soon as Kevin heard the word "where" he would automatically slap a hand over one eye. He was too funny.

Gracie had her last day of school on Tuesday. I went to the party her class had. I honestly didn't want to. I didn't want to see the other mothers - or the teachers. I knew it would be full of softly asked questions like "Are you OK?" and "How are you doing?" I get tense. Maybe because I know I'm going to lie to them. Which I did. Who the hell wants me to tell them that I feel empty inside? That I don't want to even get out of bed in the mornings? That it is a struggle for me to get through every damn day? That I think about the day I will die so I can see my son again and hold him in my arms? Nobody wants to hear that from me. I'm going on - and I'm doing that because I don't have a choice. We didn't have a choice when it came to Kevin. We took good care of him - it's just what you have to do. You just find a way.

Beyond The Sunset

Should you go first and I remain
to walk the road alone,
I'll live in memories garden dear,
with happy days we've known.

In spring I'll wait for roses red,
when faded, the lilacs blue.
In early fall when brown leaves fall,
I'll catch a glimpse of you.

Should you go first and I remain,
for battle to be fought.
Each thing you've touched along the way
will be a hallowed spot.

I'll hear your voice, I'll see your smile,
though blindly I may grope,
The memory of your helping hand
will buoy me on with hope.

Should you go first and I remain,
one thing I'll have you do:
Walk slowly down that long long path,
for soon I'll follow you.

I want to know each step you take,
so I may take the same.
For someday down that lonely road
you'll hear me call your name.

~Author Unknown~

Our love to you all. Have a great day.

Saturday, May 27, 2006 5:06 PM

We're home! We all had a good time and enjoyed getting away for those few days. I know I needed it. It was fun - but Chris and I seemed to always have Kevin on our minds. We went to a place called Great Wolf Lodge in Williamsburg, VA. It had an indoor water park. Gracie had a great time. Chris and I both would mention to each other that we were thinking about Kevin and how much fun he would have had. He wouldn't have been able to do much - but he would have enjoyed watching everything that was going on around him. We also went to Busch Gardens on Thursday. There were several things there that he could have ridden. Gracie said he was there with us. We had gone to WalMart for a few things and she said, "Mommy, find Kevin!" Huh? She told me that he was hiding from me. He was under a clothing rack. She said that he slept with Chris at the hotel each night since she was sleeping in bed with me.

After Busch Gardens, I had an appointment at the hotel spa for a massage and spa pedicure. It started off with them putting me in the "serenity room". I must say - that isn't the place to put a grieving mother. It was dim, quiet, had a fountain going and had soft music playing. I was alone and crying within 3 minutes of being put in there. Then the lady came to get me for my massage. She put me in another dark room and told me what I had to do to get ready and then she would be back in. I got ready and then I started to cry again. She came in and I asked her for a tissue. She asked if I was OK. Of course - I said 'yes'. I always do. Then I said, "No. I have to tell you...I lost my son a couple of months ago and I haven't had much quiet time since then. And when I do have quiet time, I cry. So, I figured I would just tell you so you wouldn't wonder why I was crying for the next hour." I did cry - off and on. She talked to me during my entire massage. Some things got my mind off of him and other things were questions about him that made me cry. But I LOVE telling people about him and his wonderful spirit. Having her talk to me helped. Then I went for my spa pedicure. If I ever go for another pedicure here in Rockville - it will totally suck after the pedicure I had there! So I don't even think I'll bother going for another one. Of course I had to tell her about him too. But I upset her a little. That's OK - that means she has a kind heart. At least I wasn't crying alone.

We went to a few outlet stores on our way home. I can't tell you how hard it is for me to not go to the little boys section to pick out clothes for Kevin. I had to stop myself in WalMart too. I see toys he would like and I want to get them for him. It was really difficult for me to not buy the latest Baby Einstein videos that came out after he passed away.

We will be going to the carnival that's in town this weekend (or maybe next weekend. I'm tired.) We took Kevin last year. Someone told me to get him a little toy from the fair. Gracie can win him one in a game. Then take it to the cemetary and leave it for him and let Gracie tell him all about it. We will do that. I think it's a great idea.

Those pics finally came that I got off the digital camera. I'm kinda bummed because I didn't notice the red eye in some of them until after they came. I will get those redone. I will work on getting them posted too. I want to send some to his nurses too. I have some thank you cards to get done yet. I've been waiting because I also ordered stamps with his picture on it. Those came in too while we were gone. It will be great to have his photo on the front of his thank you cards. Don't you think? They are pretty cool.

Well, I wasn't gone long, but I missed being away from home and Kevin's things. I think I need to go watch his video and look at some of his pics. You all take care.

Tuesday, May 23, 2006

I don't know what my problem is today. I woke up in a fine mood. I normally do. I was doing OK. But at work today I was in the mechanical room going over some water pressure issues with the maintenance guys and I felt like I was hit with a ton of bricks. A picture of Kevin (dead) popped into my head. I dazed a little and almost started to cry. I couldn't get it to go away. I kept holding my tears in - thinking "these guys are going to think you are a weirdo! Suck it up Karen and get out of here." I finished with them (a little abruptly) and left. Then I got sidetracked and busy so it did go away. Then it came back. I've been crying for about 15 minutes and staring at Kevin's pictures. I need to tell myself to think of good things when it comes to Kevin - but it doesn't always work out that way. I see him in his casket. I think about the people who had never met Kevin that saw him at the viewing. He didn't look that way. I want them to know that he didn't look that way! God, I feel like I'm having a freakin breakdown. I need to stop and calm down...I don't want to call Chris - it'll just upset him that I'm upset and he can't do anything to help me. Why can't I stop crying? And now I'm going to be worried because I'm worrying all of you. Well, don't worry. It's just something that I'm going through and I hit some rough patches every once and a while. It's only been 2 1/2 months. It's still so new and so painful. I think I hold it in more than I should and I eventually just fill up and the tears start to flow. Sigh...God, this has to get better eventually...it just has to.


God looked around his garden,
And found an empty place.
He then looked down upon the earth,
And saw your tired face.
He put his arms around you,
And lifted you to rest;
God's garden must be beautiful-He always takes the best.
He knew that you were suffering,
He knew you were in pain;
He knew you would never get well on earth again.
He saw the road was getting rough
And hills were hard to climb
So he closed your weary eyelids, and whispered,
"Peace be thine."
It broke our hearts to lose you,
But you didn't go alone,
For a part of us went with you,
The day God called you home.
~Author Unknown~

We are going away for a few days. I will update after we get home. We need a break. You all take care and have a wonderful week and Memorial Day weekend.

Sunday, May 21, 2006 2:32 PM

Yesterday got a little better for me. I met AJ, Jordan and their Mom for lunch with Gracie. AJ seems to be doing really well. Gracie ended up being a drama queen though. She also got a little upset because I sat next to AJ when we ate. She wanted to play with him. (But so did I!) We talked about other children. Even though Chris and I were both tested for AGS, if I were to get pregnant I know that I would worry about it from the moment I found out about the pregnancy. Even though there would be nothing I could do about it. I'm scared. I'm also scared for Gracie to be an only child. I know, I know - many of you out there are only children and you are just fine. But I enjoy having my sisters around (although it was a rough first 15 years or so.) I want Gracie to have that. Chris and I won't always be around. Oh, well...I haven't made up my mind yet. It's still too soon. Chris on the other hand is certain that he wants more children. Easy for him to say - he isn't the one who has to contort himself in different shapes to wipe himself at 8 months along!

We also had some friends come over today for a visit. They brought their 3 kids - the youngest being 3 months old. I must say - she was NOT good birth control for me. She was perfect and didn't fuss at all.

After they left, we went to the cemetery. We had bought pretty red roses for Kevin. I like the roses the best. Good thing we did - they had taken the artificial flowers and his butterfly away that I left earlier this week. Chris had some quiet time there while I played with Grace and then we switched. I sat there and cried and talked to Kevin. I told him that I was doing OK - but I missed him so much. I remembered holding him while he slept. Then I remembered holding him that same way after he had died. I just cradled him in my arms for the longest time. I talked to him about his last day. I asked him if he knew that Mommy and Daddy were there with him. I want to believe he did - but I don't know. Chris and I sat there and talked a little bit. I told him that I was scared about the heart surgery. Maybe God knew that. Maybe Kevin wouldn't have survived the heart surgery. It would have been so much for him. We wouldn't have wanted Kevin to die in surgery - away from us. I guess it was His plan all along. He knew when our baby had enough and let him rest. I told Kevin that I knew he was in a better place - but Mommy wants to be selfish and rather have him here with us. One day I will be able to hold him again....one day.

Someone called the house last night at 1am. I guess it was a wrong number. But we only got calls at that time when Kevin was in the hospital and not doing well. That is the first thing that popped into my head when I heard that phone ring, "What's wrong with Kevin?" Then of course, it only takes a couple of seconds for reality to set in. Even when I sit at Kevin's grave it doesn't always feel real. I just feel foggy about all of it sometimes. Maybe I do it to myself without knowing it...so I don't feel constant pain and sorrow.

Oh, one last thing. There was something that Alexander's Mom put on his website that I wanted to share with all of you. I read it this weekend and I related to every sentence. here it is:

Bereaved Parents Wish List

I wish my child hadn't died. I wish I had him back.

I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.

If I cry and get emotional when you talk about my child, I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child and you have allowed me to share my grief. I thank you for both.

Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

I need diversions, so I do want to hear about you, but I also want you to hear about me. I might be sad and I might cry, but I wish you
would let me talk about my child; my favorite topic of the day.

I know that you think of and pray for me often. I also know that my child's death pains you too. I wish you would let me know these things through a phone call, a card or note, or a real big hug.

I wish you wouldn't expect my grief to be over. These first years are traumatic for me, but I wish you could understand that my grief
will never be over. I will suffer the death of my child until the day I die.

I am working hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that he is dead.

I wish you wouldn't expect me 'not to think about it' or 'be happy'. Neither will happen for a very long time, so don't frustrate yourself.

I don't want to have a 'Pity party', but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.

When I say, 'I'm doing okay', I wish you could understand that I don't 'feel' okay and that I struggle daily.

I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are
all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.

Your advice to 'take it one day at a time' is excellent advice.
However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died and I will never be that person again.

I wish very much that you could understand ~ understand my loss and my grief. But, I pray daily that you will never understand.


--Poem from Compassionate Friends

Saturday, May 20, 2006 8:12 AM

I did not have a good night last night - and my morning isn't getting any better. I had bad dreams last night. The main problem being that I couldn't find Kevin. He was there - and then he was gone. It was time for his medicine and I couldn't find him. I was frantic. I eventually woke up - still worried, wondering where he was. I was actually ready to go check his bed. But it only took a minute for me to realize he was gone. I've been crying this morning. I remember calling my father and sisters at 2am to tell them that Kevin had died. I remember all 3 calls. I'm done - I just can't write anymore. It's not a good day.

Friday, May 19, 2006 6:25 AM

I learned how to use the port to my digital camera last night. I cropped and re-sized some of Kevin's pictures that were "stuck" in my camera. I've ordered some wallet sizes to give out. They are really cute. I'll get them posted on his site too. The really good ones are from last summer. He was so happy.

My grandma was telling me the other day a story about my grandfather's grandmother (my great great grandmother). She said that shortly after her and my granfather got married they were visiting her. She was in her 80's. She had 10 children I believe. But grandma said that she found out that day that she had 11 and one little girl had died when she was 2. Grandma said that it had been so long ago that she had lost her - but she still cried while telling grandma about her. She never got over her. I'm not going to ever get over losing Kevin. I don't know why I try to fight it. I hold feelings in sometimes. But then other times I really let it loose. I try to make myself not cry as much. I change my thinking to something else. If my mind wants to go to Kevin - I should always let it and never try to avoid it. I miss that boy. I smiled and cried while looking at his pictures last night. I'm so happy that he had good times.

Well, today is my date with Gracie. I know she's been looking forward to it. Me too. I hope you all have a wonderful weekend. Take care and God bless!

Thursday, May 18, 2006 6:23 AM

I signed off on the final proof of Kevin's grave marker. The blanket was taken out of the background. It's going to look really nice. The copy doesn't really give it justice. They said that it takes 3 months from start to finish. I thought it was 3 months from this point. So, we are 8 weeks in and I'm expecting another 5-6 weeks before it arrives. I put fake flowers down yesterday (and I'm not supposed to.) Real flowers are costing us about $60 a month and the deer eat them that very same night. So Kevin has stems laying on his grave for a week until we get back there to replace them. He also got his butterfly replaced. A friend bought 3 of them so we have back up when the grounds people remove them. I'm sure they'll catch my fake flowers, but it may take some time since they look so real. We'll see.

Gracie has been playing with all of Kevin's toys lately. And she watches his Baby Einstein movies so she can dance to them. It's a little difficult sometimes because I remember the songs and the noises his toys make and I picture him there playing with them. But it's what she wants to do - so I let her. She has been sleeping with his ducky that a friend gave him. When I look at that I remember his giving it kisses and hugs. She holds on to it all night too. She wakes up with it in her arms. She misses him a lot too. She told me that Kevin is small now. She shows me with her hands and it's about 7 inches tall. I never thought about angels being that tiny. But maybe she's right. Who ever said that they stay the same size as when they were on the earth?

Gracie and I have a date tomorrow afternoon to go see a new movie. I showed her the commercial and she said, "Is something gonna die in it? Is it sad?" I told her 'no'. So I sure hope nothing like that happens...

You all have a wonderful day. Take care.

Wednesday, May 17, 2006 6:35 AM

Thank you all for your kind words of support to let me know that I'm not going insane. My attitude improved a bit yesterday afternoon - but I still feel 'out of it'. I cried myself to sleep again last night and woke up to cry at 5am. Sometimes I just can't keep my eyes closed because I keep seeing how Kevin was on his last day with us. No matter what I do or how hard I try to think of something else, it just doesn't work and I picture him dying. I see him posturing with pain. I see his skin turning purple because of his organs starting to fail. Does he know his Daddy and I were right there? I kept whispering to him that it would all be OK and that he could go if he wanted to. He could rest. Even though I can't get that picture out of my mind - I'm still so glad that we were there with him. I can't imagine the stuggles I would be having if I hadn't been there for him. The thoughts that would be going through my head wondering what it would have been like for him. We would want to know every detail. So, even though this is painful for Chris and I - we are grateful.

I had a dream last night. It wasn't a bad dream, but I was very sick in it. I had a brain tumor and it was way too advanced for anything to be done about it. But you know what? It was OK with me. I had no problems coming to terms with it. I was happy that I would see my son again. In reality, I wouldn't want to leave my family - but I didn't seem to have that problem in my dream. I didn't have Gracie either - I don't know where she was in my dream. All I could concentrate on was seeing Kevin again. I would walk up to him and the rest of my friends and family that had passed on - but he would walk to greet me. And I said ,"Oh, there you are...I've missed you." And I got to hug him and kiss his chubby cheeks.

I am going to the cemetary today at lunchtime. They called yesterday afternoon to tell us that the 2nd proof of his grave marker is in. I'm pretty excited about it. I hope it's the final one and it can finally get made. Gracie had asked on Mother's Day why he didn't have anything like the other people. And why didn't he have a "thing to put the flowers in".

I hope you all have a wonderful day. The cookbooks should be ready real soon if anyone is interested!

Take care.

Tuesday, May 16, 2006 6:45 AM

I still seem to be in a bit of a funk. I don't know what's wrong with me lately. I'm just not happy. I cried myself to sleep last night thinking about Kevin. I'm depressed, but I don't think I'm suffering from depression. I'm very crabby at times and I don't really have a reason for it. I recognize that I'm being crabby, but I can't seem to stop at that moment. I don't really want to do anything or go anywhere. I feel very heavy, like I did right after Kevin had died. The bereavement coordinator from hospice never called me back. I guess I should give her a call. Maybe she can tell me that this is all normal. But then again, I think "How do you know what I feel? Has your child died?" But she had been doing this for a while and is trained for this. I really don't even feel like calling her. Maybe it's just getting over Mother's Day. God, it can't stay like this for every holiday and special days! The children's youth carnival is coming at the end of the month. All I could think about was that we took Kevin last year and how much fun he had and how well behaved he was. I rode with him on the carousel a couple of times. It brings a smile to my face - but puts tears in my eyes at the same time. Sigh....I'll get through this. One day at a time. That's all I can do.

Monday, May 15, 2006 6:29 AM

I thought that I would be able Mother's Day. I didn't think it would be too hard. Well, it was. I woke up crying and didn't want to get out of bed. I stayed in bed and watched a movie. (A stupid movie.) Then Gracie and Chris brought me by cards and the gift she had made me in school. I cried when I opened the cards because I knew there would never be one from Kevin and it hit me how much I missed him.

The 3 of us went out to lunch and then I went into Safeway to get some flowers for Kevin's grave. The place was PACKED. And about 30 people in line had flowers. I thought to myself that I was probably the only mother in there buying flowers for my son's grave - not for my mother. Then we went on to the cemetary. It was PACKED too! I guess it will be like that on days like this and holidays. As I stood at his grave, I looked around, wondering if there were any mothers there mouring for her child on this Mother's Day. I was probably the only one remembering how cold my son's face was while laying in his casket. I was probably the only one remembering how it felt as my child's body grew cold in my arms in the hours after he died. But I don't think I was the only one struggling to make it through Mother's Day.

I was crabby for most of the day. I didn't want to do much of anything. I felt almost the same as after we lost Kevin. I sat at a TV tray to eat my dinner that night and ate ice cream. Then I went up to take a nice long bath alone. Gracie only came in about 18 times begging to get in with me. I stood my ground. It was my quiet time. My time for remembering.

Afterwards, I got out and went and got in bed with Gracie and snuggled with my little girl. She always tells me that she loves me. Several times a day. I am grateful for my children. And grateful for the memories that I have of my Kevin.

I hope all you Mommy's had a wonderful, special day.

Thursday, May 11, 2006 6:57 AM

Well, lunch time came and went yesterday and I didn't get a chance to update. The service was very nice. It was also very difficult for us. We enjoyed seeing our JHH friends again. Kevin's favorite nurses were also there. A couple we hadn't seen since Kevin's last day at JHH in February. They had a hand made quilt there and you could sign your childs name and the quilt will be hung in the children's center. We got to chat with Kevin's ladies for a few minutes and then went in for the ceremony. The invocation was by Pastor John whom we had met in the PICU a few times. He also said a prayer for Kevin before he was flown to CA. He said one thing that stuck out to me. "Look to the past with gratitude and to the future with hope." We are all extremely grateful to have had Kevin in our lives - no matter how hard it was and how quickly it ended. They had a guest speaker who had lost 2 of her children who were born with disabilities. One was 21 and the other was 12. She said she had to get used to the silence that was now in her home. No nurses coming and going. No delivery people in and out. No equipment running. It was silent. Chris and I had the same problem in our own home. After her second child died, her husband died. The entire time she was talking, I was thinking how much worse it could have been for us. That was always my motto "It could be worse." Then they had a slide show with the pictures and names of the children who had died. That was pretty hard too. You could tell that some of those children never made it out of the hospital. They never made it home. It reminded me of how lucky we were to have had that special time at home with Kevin. And I really liked seeing the children with smiles on their faces. It shows that it wasn't always bad - they had happy times. Kevin did too. I also looked around the room while the pictures were being shown. I looked at people's emotions. Some were crying (like me and my family). But some were OK. It showed me that the pain does ease over time. It will get easier. But I can't seem to keep that in mind all the time. Especially when I'm in a funk and missing him a lot.

They also had 2 singers there that played guitars. They did a really nice job. One song they sang would have had Gracie singing along with them..."This little light of mine." She really likes that song. She has been listening to children's Christian music a lot recently. We all enjoy it. After the ceremony, everyone went to have a snack and drinks. We got to walk around and see the pictures of people's children that they have lost. We got to visit with more people. One of the PICU doctors was there. She remembered us. She was the only PICU doctor that really talked to us. The others didn't communicate very well. We appreciated her and we told her that. She said that Kevin was such a special and strong baby. He stood out from the rest and will always be remembered.

They gave out flowers at the ceremony. Chris and I got 3 bunches and we took them to the cemetary yesterday afternoon. Just Chris and I, alone. We cried together and talked to Kevin and told him about the ceremony and how everyone misses him. It still just doesn't seem real to me. But standing there at my son's grave wakes me up to the reality of it all.

I received a thoughtful gift from some friends yesterday. It is a bracelet that has Kevin's name on it and his birthstone. Gracie really liked it - but she immediately noticed that it wasn't HER name. She said, "It's not my name. And it's not YOUR name. Who's name is that?" I told her it was Kevin's and she was OK with that. (But she told me to get one with her name on it too.) I had a stranger notice it yesterday afternoon. She asked if it was my husband or my son. I said it was my son's name and just left it at that.

I hope you all have a great day. And if I don't get a chance to update again soon - we hope that you all have a wonderful and special Mother's Day. You've got the best job in the world. And one of the hardest. Take care.

Wednesday, May 10, 2006 7:17 AM

I slept in just a tad this morning so I can't update now. I will update later on today on my lunch break so I can fill you all in on the memorial service last night!

Monday, May 8, 2006 6:23 AM

Gracie went with me early Saturday morning to get my blood work done at the lab. She was really good. But there was a 5 year old boy there that needed to get his done and he went back before us. It didn't go well for him. Listening to him scream upset me because it made me think of Kevin's pain. Granted, this kid had a lot of anxiety leading up to it. Kevin never knew it was coming until the rubber thing was strapped to his arm or leg. Gracie started to ask questions about Kevin at that point. I told her that it was painful for him, but it was only for a few seconds and then the pain stopped. What I didn't tell her was that most of the time they had to do it to him several times and in horrible places (like on the side of his foot.) I tried to always be there with him. Some parents would step outside until it was over. It was difficult standing there watching your child go through this pain. But they need you. They need you to tell them what a good job they are doing. That it will all be over soon. That you love them. You also needed to be there to tell them when your child has had enough.

We went to the cemetary early Saturday. We had to return something at KMart and then we drove through Wendy's to grab a bite to eat. Then we went across the street to the cemetary and had lunch with Kevin. The cemetary was busy with funerals. We saw at least 6. I felt for all of those people. Knowing how they feel and what they are and will be going through. We immediately noticed that someone had been there to see Kevin. His old dead flowers and butterfly were gone but there was a little Bambi figurine laying on top of his grave. I knew it would only be a matter of time before they caught my butterfly there and removed it. (So I'll just have to go buy another one.) So we layed our flowers out. (Gracie always like to help with that part.) And we put the little Bambi towards the top of his grave. I have no idea who would have been there. His grave is still unmarked and not the easiest to find. (But not the hardest either.) While we were sitting there thinking, I told Chris how I used to really dislike cemetaries. They aren't a place that you want to be. But now, I look forward to it. I like going and being close to Kevin. Being there surrounded by others grief doesn't deter me. I concentrate on my memories of Kevin while I'm there. Chris and I like to talk about him and recall our memories of him while we are there. It makes it a little easier. After we finished, Gracie left him a french fry and we left.

The rest of our weekend was quiet. I took the time to box up Kevin's paperwork. We bought a 40 Liter container at KMart. It's stuffed now. I put all of his medical bills, misc paperwork, funeral and cemetary info, sympathy cards, etc into this box. It took me a while because I looked through a lot of it again as I was packing it. I have thought about Gracie going through it when she is older. I want her to see all of the nice things people said about her brother. Although she will grow up knowing how special he was. I have thought about how clingy she is now and how clingy I will probably be as the days go by and she gets older and starts to let go. I hope she will understand why I am the way I am. You love your children SO much. But after you experience losing a child, you REALLY experience how much you love them. So much that you would give your life to still be with the one that died because you can't bear to be without him. And to bear to live with this horrible pain inside for the rest of your life because you so love the one you still have with you. Yes, I will be clingy. I don't think I will be able to help that. In a way, I'm still clinging on to Kevin even though he isn't here anymore. It just doesn't feel right to remove his things from the house. His tubby toys and baby soap are still sitting by the kitchen sink; his toys are still EVERYWHERE; his supplies are still on his table and his room is untouched. His bed is still made up from the last day he slept in it. I just can't seem to let him go.

Thursday, May 4, 2006 6:24 AM

Sorry for not updating yesterday. I hadn't slept well so I didn't get up on time. We're all doing OK. Chris and I are getting a little nervous about the memorial ceremony next Tuesday. It's still so new to us. We know we are going to be very emotional. I'm not sure if we will see too many JHH staff there or not. I'm not ready to go visit the 6th floor. I still think about our last day there and our walk with Kevin to the ambulance to take us to CA. The hall was filled with people telling us goodbye and some crying and giving hugs. I wonder if any of them thought that it could have been the last time they were going to see him. That was the last time Kevin was doing really well. The flight took a lot out of him and then he had his cath and he never really got back to himself again. I remember him laying in his crib at the hospital with pretty girls surrounding him. He loved that. The flight nurses had to get filled in on Kevin - but I didn't have to say a thing. They all knew him so well that they did all the talking for me. Chris and I miss them all.

I went to the doctor this week for my check up. I had given him back all of the sample pills he had given me. I could never remember to take them so I stopped. I did OK without them. He told me that I needed to give it time. I told him that they won't do any good if I can't remember to take them. Plus what I am going through is natural. I'm getting a little bit better. I need time. Time to grieve for my baby. He understood. And my blood pressure is now going down since I have changed my diet and I exercise. I just didn't have the time to eat well when we had Kevin. Speaking of eating, I just had a memory shoot through my brain...we were sitting at the kitchen table with Kevin and he was pointing to a take out container partially wrapped in foil. He kept pointing and grunting at it. So I figured he wanted to touch the foil. I gave it to him. He didn't want that. He grunted and pointed again. He wanted what was in the container (a breaded mushroom). I picked one up and said, "Is this what you wanted? Do you want to lick it?" That stinker grabbed it out of my hand and shoved the entire mushroom into his mouth as fast as lighting! He wanted to eat so badly - but he just couldn't. (But Gracie says he can now since he's an angel.)

Gracie's great grandma is coming to my parents house today to stay for 2 weeks. She is very excited about seeing her. Gracie will hardly ever be home now. She leaves as soon as she gets home to try to talk her Pop into taking her to the park. Then she trots back there after dinner. Having your grandparents live behind you is very nice. She has a great bond with them.

I don't cry every night anymore. It's not as bad as it used to be. It was hard for me last night because I had Kevin's "B" in the chair next to me and it made me think of him. So I cried last night. And then again this morning. And I'm getting ready to right now because I am looking at his picture. Gosh, he was so handsome. I've also been thinking about Mother's Day. It's going to be difficult for me. It's advertised everywhere so I'm constantly reminded of it. I'm sure we'll go to the cemetary that day. I feel closer to him when we are there. OK, I'm crying. I need to go. You all take care.

Tuesday, May 2, 2006 6:19 AM

There are no plans to wear mascara again any time soon! It fell off on my 5 minute drive in to work yesterday. I listened to that Elvis song "My Way" (or Frank Sinatra - ick) and it just went downhill from there. Not every verse in it can apply to Kevin - but a lot do. I always sang this to him when he was feeling bad and was in the hospital:

And now, the end is near;
And so I face the final curtain.
My friend, I’ll say it clear,
I’ll state my case, of which I’m certain.

I’ve lived a life that’s full.
I’ve traveled each and ev’ry highway;
And more, much more than this,
I did it my way.

Regrets, I’ve had a few;
But then again, too few to mention.
I did what I had to do
And saw it through without exemption.

I planned each charted course;
Each careful step along the byway,
But more, much more than this,
I did it my way.

Yes, there were times, I’m sure you knew
When I bit off more than I could chew.
But through it all, when there was doubt,
I ate it up and spit it out.
I faced it all and I stood tall;
And did it my way.

I’ve loved, I’ve laughed and cried.
I’ve had my fill; my share of losing.
And now, as tears subside,
I find it all so amusing.

To think I did all that;
And may I say - not in a shy way,
No, oh no not me,
I did it my way.

For what is a man, what has he got?
If not himself, then he has naught.
To say the things he truly feels;
And not the words of one who kneels.
The record shows I took the blows -
And did it my way.

He sure did it his way didn't he? He never said what the doctors said he was going to do. He was stubborn as a mule. I think he gets that from both his Dad and me. I mean "got that". I tend to speak of him in the present tense at times. It's been almost 2 months since he died. It's still so new and raw to us.

Gracie said that Kevin sat with us at dinner last night, with Jesus "because Jesus died too". She kept making him get out of Chris' seat and move to the empty seat. She said that he wanted to sit next to me, not across from me. So he kept moving into Chris' seat every time he got up for something. Then he ate dinner with us. She wanted to know if Kevin had teeth since angels don't need bones. I guess it depends on what they are eating. She said that he liked not eating through a tube in his nose anymore. I'm sure he's doing many things now that he couldn't do here with us. And I'm happy for that. But I miss him so very much.

Monday, May 1, 2006 6:26 AM

Our weekend was nice. We went to see Kevin yesterday afternoon. We were there for about 40 minutes. We had bought beautiful red and orange roses and spread them over his grave. And then we sat there and talked about funny things Kevin did. Chris remembered how well Kevin could communicate when he didn't want something or didn't want to do something. He would shake his little head 'no'. And if you kept pushing him, he would really shake his head 'no' and would grunt at you at the same time. Like "Didn't you hear me the first time lady? I said 'no' and I meant 'no'". Or he would simply push your hand out of the way if you were trying to give him something he didn't want.

Chris and Gracie went to play on these huge rocks they have near Kevin's grave. I sat there with Kevin alone for a little while. Then an older woman with roses came up to me on her way past to another grave. She stopped and asked who was buried there. I told her it was our 2 year old son. Then SHE started to cry. SHe layed a rose on Kevin's grave. She said she was there to see her son too. But he was 50 when he died from cancer 3 years ago. Then she bragged about him. I listened patiently because I knew my turn was next. Then I got to tell her a little about our brave little boy. I asked her if it gets any easier. She quickly told me "no". You always have an empty place in your heart. And you are always thinking about them. Then I walked 2 rows back to her son's grave with her so I could get the vase from his marker to fill it with water for her. (Those suckers are really heavy - even empty!) While I went to get water, I got her one of Kevin's prayer cards so she could see his face. (I can hardly wait until his marker is there and people can see his face.) Then she came over and visited with us a little more until it was time to go. I have that little butterfly stuck in his grave and it's still there. While we were there, a butterfly flew right past my face. Then when I looked out the window on the way home, there was another one right there in front of me. It made me think of him.

I forgot to tell you all what Gracie did the other night...I was in the bathroom and Chris was already in bed asleep. She was in her room and I heard her talking quietly. I listened. She was talking to Kevin. She told him that I was going to sleep with her tonight so she could go sleep with Daddy. She said, "You can just go right through the wall. You can do that now. Go on...go ahead. He's right in there." And then she told him goodnight. I went in to wake Chris up and told him that Kevin was sleeping with him that night. Normally Gracie tells me that Kevin is there when I'm upset. She even did it at his grave yesterday. (First he was behind me but then he sat in my lap.) But this night, she wasn't doing it for me because I wasn't around. They say that children and animals can see spirits. I choose to believe that she can see her brother and I believe that he is there with us.

I'm going to try to wear mascara to work today. It will be my first time wearing any makeup in about 3 months. I just hope I don't cry and make it streak down my face first thing this morning...wish me luck. Take care everyone.

Thursday, April 27, 2006 6:23 PM

Last night I was a little weepy. Chris had gone up to put Gracie in the tubby while I got a few things done around the house. I kept crying. I needed to watch Kevin's video. I knew it would make me cry, but I also knew it would make me laugh. And it did both. I got myself together and went upstairs to finish her bath and Chris noticed I had been crying. I told him I watched the video. I told him I HAD to watch the video. I am so glad that we have that movie.

Gracie got to come to work with me for the last hour of the day today. She was very excited when she got there. I think she had fun. She didn't want to leave. I told her she could come back another day and she was OK with that - so we got to leave.

My little angel charm came today in the mail. I have a bracelet that has a little cross on it that my sister got for me shortly after Kevin was born. I'm going to add my little angel to it. Next I want a "Mom" charm and then I will be finished. Those are the only 3 I want. They will all mean something.

Chris and I will be meeting with the hospice bereavement counselor next week. She will come over in the evening. She will also meet with Gracie to talk to her. We are still getting sympathy cards in trickles. We have many. And I'm keeping every one. They all say so many nice things about my family and especially my son. I appreciate hearing that Kevin has made many people strive to be better people. Better nurses. Better mothers. Better fathers. He made Chris and I better parents. We always said that God gave him to us for a reason....it seems to have been many different reasons and we are discovering them almost every day. Another change in me that I have noticed recently is that I really don't sweat the small stuff anymore. I just don't seem to really care. Things that I used to worry about - not anymore. I do my best and if something goes wrong, then it'll be OK. It's not the end of the world. Everything just seems so trivial and minimal compared to what I've been through these last 2 1/2 years. I'm not sure if this is something that is just a phase or if it's a new part of my personality. I guess its a good thing. Hopefully THAT will bring my doggone blood pressure down!


Kev baby - do you hear your mommy, daddy and sister crying for you every day? We do. I told someone that I have my "moments" each day and that they will eventually go away...in about 50 years. When I finally get to be with you again. Mommy tells people that she is "hanging in there" when they ask how I'm doing. I can't tell them the truth. That I'd rather be in Heaven holding you. Its hard to go on with each day knowing that you aren't here to take care of. I see you in everything. I lay in bed at night listening for your cry. Mommy is in agony because I miss you so much. But I know that you are happy Kev. That's what counts. That is what has always counted. That's what Mommy and Daddy have always wanted for you...comfort and happiness. I love you and I miss you more than anyone can ever imagine. Until we meet again my little love. MaMa

Wednesday, April 26, 2006 10:34 AM

I forgot to mention yesterday that the hole in the picture of his marker is where the flower vase will go.

Gracie got upset last night. I was watching SCRUBS (which is supposed to be a funny show), but they changed that last night and people died. She was supposed to be asleep - but she wasn't. I heard little sobs and I asked her what she was doing and if she was upset. She asked why the people disappeared from their beds. I told her that they had died. I explained how sometimes when someone dies, doctors try to bring them back, but sometimes it doesn't work. (I needed to go over this because of that stupid squirrel issue from that movie.) I explained that it couldn't work for Kevin because he was too sick. Then she started to cry louder. I told her that she could always tell me what she is thinking about. She pointed to the ceiling. Kevin? Yes, she was missing her brother. I told her that we needed to think about the happy times we had with him and it would make us smile. I said, "Remember sitting on the floor with him and rolling the ball to him?" She said that he would always roll it back to her. I reminded her of peek-a-boo and 'if you're happy and you know it'. Then she started to smile and laugh. Which made me smile and laugh. She said that he was there with us again and he wanted to lay in between us. I told her to have him give me a kiss goodnight. I hate that she feels the pain of losing her brother - but then again, I'm glad that she has it. I don't ever want her to forget him. She said last night that she wants to tell her new brothers and sisters about her little brother and their big brother. First, I thought how great that would be...then I thought...wait a minute...how many more kids is she planning on me having??

I had my first moment already this morning. I went by the maintenance office and someone was in there and I said hello. He said, "Hi, how's that little one doing?" Immediately, my entire body got hot and my legs felt weak. My face just went blank. I started to well up with tears and put my finger up as to say 'gimme a second'. He looked worried and said, "Not too good?" I said that he had passed away last month. Then I got a hug. That was pretty hard for me - I hadn't had to do that. Tell someone that I know about Kevin. Everyone already knows. I do know that I don't want to do it again!


"When you lose a parent, you lose your past.
When you lose your spouse, you lose your present.
When you lose your child, you lose your future."

Tuesday, April 25, 2006 10:53 AM

Chris, Gracie, Nina and me went to the cemetery yesterday to take him some flowers and see the proof of the grave marker. It looks pretty good. We only need one correction. There is a blanket in the background that we want removed. Check it out - it's on the photos page. It will be all bronze and his pictures will be etched into it.
After we signed off on it, I said, "OK, let's go see your brother." Gracie says, "YEAH!". We went and his little butterfly marker was still there, but it was bent over and smooshed into the dirt. We fixed it. He also had stems from the flowers we left last time. The deer ate the flowers off the tops. He has grass growing on his grave now. It's thin, but it looks better than just having dirt there. His marker is going to be so beautiful.

Yesterday afternoon, Dr. Schwarz called to check on us. That was very sweet. I hadn't talked to her since Kevin had passed. So I started to cry immediately. (I had just finished crying over him about 5 minutes before she called. So I guess I wasn't done yet.) She said that she had been thinking about us and reassured us that we did everything we could for Kevin. I mentioned that I worry about what happened in CA and if it wouldn't have happened if we did somethings differently. She said, in so many words, that Kevin was going to pass away eventually. He was too sick. Everyone did what they could to keep him around longer - but we would have had the same outcome. It just would have been later. I told her that we always had hope....we had to. That's what kept us going. Faith and hope. She told me that her brother died when he was 3 years old before she was even born. She said that is the reason why she became a doctor. She saw the pain that her parents went through over the loss of their son and she wanted to do something with her life to help change that for others. She's doing a great job. We love her. So does Kevin.

After I got off the phone with her, I kept crying. Gracie tried to comfort me. Then she said, "Shhhh Mommy....he's here. He's right here." I told her to tell him to give Mommy a big hug because I needed it. She said he did. She said that she will be happy when she dies because she will be able to see her brother again. She said that she isn't scared of dying because it is a happy place. But she knows that it is going to be a very long time before that happens. It will be for Chris and I too. Chris is having a really hard time lately. He thinks about Kevin's last moments over and over. I did too at first, but it's getting better. I still do though. But I push those thoughts out of my head and think of his happy times. It's difficult to do though. You have to trick yourself somehow. I think Chris and I need to get away again. Just for a couple of days. Either with or without Gracie. There are a lot of reminders of Kevin at home. Sometimes they remind you of good things, but sometimes they just remind you that he is no longer there and won't need these things anymore. We still have his tubby soap, washclothes and toys sitting next to the kitchen sink. His toys are all around. His "B" is still on the back porch. (We only have one left. All of the others went with him in his casket.) The bouncy seat is still hanging in the living room doorway. They remind us of him and it makes us sad, but we will be sad when it is time to take them away too. Because his things all have a "place" and that place will be empty. So we are just leaving things the way they are for now. Chris and I will know when it's time. It's just too soon.

I've got to run off now. You all take care!

Monday, April 24, 2006 7:12 AM

My sister called Pumphrey's on Friday afternoon to get the number to the funeral home in CA. When she did, she spoke to the director at Pumphrey's about the death certificate and what it stated for the cause of death. She told me and it upset me. It wasn't anything I didn't know - but it still upset me. The funeral home in CA said that they have to go through the State in order to get the death certificate changed to include his middle name and that is why it will take up to 6 months. Hopefully it won't take that long.

I picked up Gracie and asked her if she wanted to go with me to the funeral home - she did. She said, "Kevin's not there anymore." Right. I owed them the balance of our bill so I took care of that too. He said, "Let me get you a receipt for that. He took out a book and was going to have to write out a receipt. I wanted to get the hell out of there. I didn't like the smell. It was the same smell that it was all the time - but now it reminded me of being there with Kevin and I wanted to get out. I told him I didn't want a receipt. I had enough paperwork for Kevin already. He pulled out the death certificate and asked if I wanted to see it. I said, "No. Just please give it to me and I will leave." I think he understood and sensed that I was getting upset. I got it and left and sat in the car and cried for a minute. I had my son's death certificate in my hands. Just one more stab in the gut to remind me that he is really gone. Then I read it. It is haunting me. Primary cause of death...complications of acute renal failure (time between onset and death - 5 days). Secondary cause of death...hepatic insufficiency (time between onset and death - 6 days). (Another kidney issue.) The other 5 reasons were Alagille Syndrome, Tetralogy of Fallot, pumonary atresia, major aortopulmonary collaterals ( time between onset and death - 2 years). That's it - 7 different causes on his death certificate. Does it help - no, it doesn't. If anything, I feel worse. Again, it's the 'what ifs'. Primary one being - what if they hadn't cut back his fluids like Chris and I asked. I don't think he would have gone into kidney failure. I'm just and angry as I am sad right now. I also wish I had been able to hold him more those last few days. He was hooked up to so much along with the dialysis, it wasn't easy. And I didn't want him to be uncomfortable. I had held him for a couple of hours a few days before he died. As soon as he was on my lap, he was relaxed and I'm sure he felt safe. I didn't hold him again until the moment he died. There are so many things I would change, now that I can't change them. But Kevin is probably up there saying, "Mommy, don't beat yourself up over this. I'm OK now."

That reminds me. I took Gracie to a movie yesterday, Ice Age 2. I liked it. She did too, except for the end. This squirrel spends the entire movie trying to get a hold of this one acorn. In the end, he finally got a hold of it, but the ice cracked from underneath him and he fell very far and was swept away by water. Later on, you see him walking on clouds and he goes through these golden gates and see an enormous amount of acorns. He is in Heaven. Acorn Heaven I guess. Then he sees an acorn the the size of a car and just as he goes to touch it, he can't. He is starting to get pulled away. It ends up that he was getting CPR on land and is pulled back into his body. Then he beats up the sloth that gave him the CPR because he didn't want to come back. That was the end of the movie. And that is when Gracie started to BALL. She was very upset because it reminded her of her brother. She hasn't stopped thinking about it or talking about it since. She keeps saying that Kevin is happy in Heaven. I reassure her that he is. She said that she will be happy when she gets to see him again. I told her that we all will.

Chris got a ring for me that I also picked up on Friday. I've been very excited about getting it. It has Kevin's birthstone in it. (Citrine) I'm not big on orange, but it is beautiful. I picked one out that I could wear with my wedding set. If ties in real nicely. I think about my baby every time I see it. So that makes me want to look at it even more.

Sometimes, out of nowhere, I start to think of moments that upset me. Things that make me sad. It's normally at bedtime. I tell myself not to think about it - which means to not think about him at all for that moment. I can't seem to switch to a happy Kevin memory at that time. So I have to just put him out of my head totally. It makes me feel bad that I can't think about him sometimes because of the pain it causes. In a way, I feel like I am abandoning him.

We get to go to the cemetary today to see the proof of Kevin's grave stone. I'm excited. I really hope that it is perfect and we can get it ordered right away. If we have any changes to it, it will take up to another month to get the next proof in. It is already going to take 3 months from the time we approve it. I hate him being there in an unmarked grave.

I've got to get going. I hope you all have a great Monday. I just hope mine is better than the last 2. This is my 3rd week back to work and I've had really hard days on my Mondays. I've already cried 3 times so far today...so that's not a good sign...God bless you all.

Friday, April 21, 2006 12:23 PM

I wish I could say that I'm feeling better today - but I can't. I still have my ho-hums. Maybe the weather has something to do with it. It may also be that I have to go to the funeral home today to pick up Kevin's death certificate and pay off our bill. The death certificate doesn't have his middle name on it and I want CA to correct it. Maybe it's being picky - but I don't care. I want it right. They said it would take up to 6 months to get the corrected one. I don't know why so long. I don't feel like dealing with it, plus it makes me angry. My sister said she would call them to see what the hold up is. I don't understand why it took so long to get here in the first place. Another thing that is taking forever is the proof of his grave marker. The cemetary people said they should have it by Monday. I hope so. I want to see it really bad. And I really hope we don't need to make any changes to it because then who knows how long it will take before the next proof comes back. Once we do approve it, it will take 3 months to get it in place. The cemetary doesn't even have a little plastic holder with his name on it. He is in an unmarked grave. I put a fake butterfly there to mark it.

I wanted to thank Judy and Dee for their kinds words of support. Of course you made me cry (and probably everyone else too.) This journal has helped me get it all out for the last 2 1/2 years. You all know I tell it like it is. Unfortunately, that means that I have to tell you all some bad things every once and a while. I have good days and bad days - just like Kevin did.

I got a little upset this morning because I saw an old e-mail to Barb at the hospital. It was a picture of Kevin and a note saying how good he was doing September of last year. Here it is: 'Our boy is doing wonderfully. I'm not sure if you still check his website or not. I think AnnaRuth does. I hope you stay updated on him. You wouldn't believe how well he's doing. He's never been this good. He's very stable and very happy. And he's got my thighs!'

I wish I could remember every second of his life and keep it with me forever. I'm happy that we have so many pictures of Kevin. I wish we had more video - but I'm glad we have some. I look at the pics every day and the videos at least once a week. I'm glad they bring me laughter along with the tears.

Thursday, April 20, 2006 8:44 AM

I'm sitting here listening to the radio. I e-mailed a request for Kevy. I used to hum a certain song to him all the time. It was "My Way" by Elvis. It always calmed Kevin down. And it fit because Kevin never did what they said he would.

I still have the ho-hums. I've got a few other things that have been bothering me that I haven't shared with you. I don't know what killed Kevin. I guess it doesn't really matter - he's gone. But it bugs me. Was it the infection? If so, what was the infection - they didn't have any positive cultures on him. Was it organ failure? Would all of this happened if he hadn't gotten dehydrated and his kidneys hadn't failed? Was it the administration of the Fentanyl and Versed? Maybe it was all of those things combined. As soon as the Versed was administered - his heart slowed and he was gone within seconds. Did the doctor standing there know he would go so quickly? Why didn't he tell us what to expect? I'm pissed off. I think about these things every day. It's not only what if's - it's why's. I feel very frustrated and bitter.

My other problem is Kevin's hernia. He had it since his first heart surgery. We were told that it didn't need to be repaired and it didn't bother him. Someone I spoke to was getting ready to have surgery for one. He told me how much it hurt him and how uncomfortable he was. Was Kevin uncomfortable? Was he in pain from it? Then I remember how Gracie would poke at it and it didn't seem to bother him. But what about when he would cry or throw up and it would puff out? Did it hurt then? What if it did - and we didn't do anything about it? There you go - another 'what if'. I guess time will help me to let go of the 'what if's'. But I don't think it will ever totally go away.

Well, I'm gonna sit here and wait for his song to play. You all take care. I'll be fine - I just need to vent sometimes.

Wednesday, April 19, 2006 5:47 AM

I'm not sleeping so well, even with pills. I've been having a lot of guilt these last few days. I went through it already once before since Kevin has passed, but it was for different reasons. Now I am feeling bad because of the pain or discomfort that was caused to him that could have been avoided. Not the needle sticks and operations as before. I keep remembering the problems he had at home with nursing. IV infiltrations. Laying in poop, pee or vomit. Just things that hurt him when they didn't have to happen. He was going through enough already. If I was there for him all of the time, I could have stopped some of it. I know, I know...I couldn't be there 24/7...I had to rest. It doesn't matter - I still feed awful and nothing anyone can say will make that go away. I have to get through it on my own.

I also feel guilty because I don't want to take Gracie to the park to play when she asks. It's not that I'm lazy...I used to take both her and Kevin together. We always saw the same people when we were there. I'm afraid someone will ask me where he is. I don't want them to ask.

I was laying in bed last night talking to Gracie about babies. She said she wanted me to have more. Two more to be exact. First a girl and then a boy. She said that would mean that she had 2 brothers - but they wouldn't know Kevin. I told her that they wouldn't - but she would have to tell them all about Kevin and how special he was. Then I started to cry and she pretty much told me to cut it out and she hugged me. I'm scared to death when I think about having other children. What if something went wrong? I just figure if we don't have any more, then nothing can go wrong. It's too soon to say anyways...but I'm back and forth about the idea.

I called the company in PA that is making Kevin's grave marker. The cemetary keeps blowing me off so I went straight to the manufacturer. The proof will be in the mail to the cemetary today so Chris and I should be able to see it by Saturday or Monday. I hope it looks good.

I wanted to share an e-mail with you all from Mary Roesinger. She works with Chris and she has helped me and my family out a lot. Both with actions and her words...


I know it had to be hard without Kevin here on earth with you but I really believe he is with you Karen. All his goodness is in you, Chris and Gracie. When we see you, we see Kevin. He lives through you. I know this sounds funny but I feel Kevin all the time. He is still touching people’s lives. I have his picture on my desk and I had a visitor who asked me who it was and I responded, “That’s my little hero.” He replied, “He looks like a determined little fellow.” I told him that was touching the surface. I said you should meet his family and then you’ll know why he looks like that. They are the most courageous people I know. I’ll share another story with you. I had a very bad day a few weeks ago. I’ve got a lot of stress on me with work, school and family. I was just down in the dumps. I lost my temper and had a crying fit for losing a school book. My wonderful husband let me go and later that day on our way to dinner I apologized to him. He said, “When I get upset now days,” as he opened his wallet and took out a picture that he had slide inside the fold, “I look at this little guy and I realize that I have nothing to complain about because this little guy did it all with all no matter what the obstacles and never complained.” It was Kevin’s funeral card. He reminisced about being at Kevin’s birthday and only meeting him once but said Kevin made such an impression on him because his fortitude. He said remembers Kevin being very limited but he was always trying to do everything. Kevin is Ed’s hero too. My husband taught me a lesson that day, I need to remember what Kevin has taught us. No matter how bad life is, it is worth living and living it to the fullest. We have a gift that we should cherish. So for now on whenever one of us has a bad day we’ll say to each other “Remember Kevin, what would he be doing if he encountered this struggle? And we feel better and adjust our attitude. Karen, he is still touching lives and every time your family touches someone, Kevin’s is right there. Thank you again for sharing his beautiful life with me. I will always cherish knowing him.


Mary

Monday, April 17, 2006 10:43 AM

Today is just not a good day for me. I cried on the way to work and I've pretty much been crying since I got here. I miss my baby. Yesterday was OK. We had a cook out for Easter. I wanted to go to the cemetary but Chris had to rest since he is working nights right now and Gracie didn't want to go. I can't go today because it's so cold and rainy out. I feel a little guilty when I don't go. Mom said that he's not there. I understand that. It's just his body. But I feel closer to him there. And when I don't go, it reminds me of the times when I wasn't able to see him at the hospital because I had to work. I won't be any better off if I go home so I'll just stay here at work and get through it. Me sobbing seems to keep people out of my office. It's like a repellent.

Gracie and I watched his video last night. I think I laughed more than I cried. That's an improvement. My favorite is the last video clip because he was feeling so good and he was so happy.

Chris and I also miss our friends at JHH. Kevin's nurses, doctors and social work people. They were a huge part of our lives for the past 2 years and now we don't get to see them either. It just adds to our loss.


Another Mommy had this on her website and it fits, so I'm letting you all see it too. I don't know who the author is.


My parents, they tell a lot of lies
they never did before.
From now until they die,
they'll tell a whole lot more.

Ask my parents how they are
and because they can't explain,
They will tell a little lie
because they can't describe the pain.

Ask my parents how are they,
They'll say, we're alright.
If that's the truth, then I say,
why do they cry each night?

Ask my parents how they be,
they seem to cope so well.
They didn't have a choice you see
nor the strength to yell.

Ask my parents how they are,
We're fine, we're well or we're coping...
For God's sake guys, just tell the truth
just say your heart is broken.

They'll love me all thier life,
I loved them all of mine.
But if you ask them how they are
they'll lie and say they're fine.

I am here in Heaven.
I cannot hug from here.
If they lie to you don't listen,
Hug them and hold them near.

On the day we meet again,
we'll smile and I'll be bold.
I'll say, You're lucky to get in here guys,
with all the lies you told!



Take care everyone. Don't forget to check out Kevin's new pics on the photo page. Our love to you all!

Saturday, April 15, 2006 10:25 AM

New pics are up on the photo page! :)

Yesterday was a tough day for Chris. Yesterday, Good Friday, two years ago, was the first day we brought Kevin home for the very first time. He recalled getting the front porch decorated for us and putting up balloons. We didn't have him home very long though - 2 days, because of the colangitis. Chris and I are still having our hard days. Chris said yesterday that Kevin isn't anywhere to be found, but yet he's everywhere you look. Everything reminds us of him. This will be our first holiday without him. I was thinking that maybe it wouldn't be too difficult because Kevin wasn't home for every holiday. But it is. We still saw him on the holidays when he wasn't home. We still will, by going to the cemetary. That is going to be very emotional for Chris and I.

We hope you all have a wonderful Easter.

Thursday, April 13, 2006 6:56 AM

I'm doing well at work. It keeps my mind off of things - (most of the time anyways.) People are slowly coming up to me and telling me that they are happy that I am back and they are sorry about Kevin. Sometimes I hold up - and sometimes I don't. I apologize to people when I cry in front of them. I'm sure they feel bad about it. I don't want them to feel bad. I just can't help myself. It's only been 1 month and it's still so raw.

A new friend directed me to a website about berieved parents. I went in and signed up for their newsletter and signed up to be a pen pal. I wrote to a mommy who lost her child in January at 23 months old, Zachery. She had a lot of the same experiences as I did. I've read her on-line diary since he passed and she has identical feelings as me. I wanted to contact someone who has been caring for a sick child. Someone that was in and out of hospitals the same as Kevin. Someone who had the same issues and now has the same pain. I think it will be a good thing to talk with her - for both of us.

We received an invitation in the mail from JHH yesterday. It is an annual tribute service that is a memorial service honoring children who have died. It is in the evening on May 9th on the JHH medical campus. They ask us to bring one framed photo or a photo collage to include in the memorial display. Chris and I will definitely be going. Actually, I'm excited about it - but scared and nervous at the same time. I know it will upset me - but I really want to do this.

Chris and I received a card yesterday from one of Kevin's favorite nurses - Megan. She wrote us a beautiful note inside. I've read it at least 10 times. One part in there let me know that she is also having some of the same feelings as me too....she said that she "still comes to work each shift hoping to see his face or hear his cry. It still doesn't feel real." I feel that way when I come home. Or even when I'm already at home and walk by his room. I stop and open the doors to his room and look at his bed. He's never going to be there again. But I check anyways. I don't go in. I just close the doors and walk away.

We have a few new pics of Kevin that we took from the last roll of film we had developed. Nina will get those put up on the photo page in the next couple of days.

We love you all. Thank you for loving us too.

Tuesday, April 11, 2006 1:26 PM

Today seems to be a little better for me. I was able to stay at work all day yesterday. I looked at the clock and it was 4:05pm and I freaked a little because I always had to be out of here at 4pm to go take care of Kevin. It only took a couple of seconds and then I thought, "Wait a minute - he's not at home. You don't need to rush." I went and picked up Gracie at Nina's and just figured I would keep myself busy as soon as I got home. Nina had told me that Gracie heard "Wind Beneath My Wings" on the radio and remembered that this song was played for Kevin at the funeral home with his pictures on the video that was made. She doesn't miss a thing.

We got home and I did the dishes and fed my birds and I looked at the clock and noticed that it was time for Kevin's 5pm med. I turned for the cabinet where his meds are - but then stopped myself (again). It's habit. I took Gracie outside to play for a little while. I did OK I think. I'm not on that medication the doctor gave me because I can't remember to take the darn pills. I guess I will just do OK without them since I'm feeling better anyways.

Later on I had to go to Mom's to get my blood pressure checked. She said that he blood pressure hadn't been this good since Kevin died. It struck me wrong. Those words - 'since Kevin died'. He really did die and I seem to forget at times. That night while I was laying in bed with Gracie, she asked me if I was going to die. I told her I was, but not for a very long time. I explained that God puts us here for only a while and we get old. Once we get very old, He calls us to come to Heaven to be with Him. I told her that it is a very special place and I'm not scared to go there. I said that she will have babies and grandbabies by the time I go. She said, "But what about Kevin? He wasn't old." "I know - he was sick. But it isn't normal for children to die, but it does happen. They are special to God." She said that she wanted AJ to come over again. I asked her if AJ reminded her of her brother - and she said that he did. She said he was yellow and has a tube in his nose like Kevin.

While I was getting ready for work, I stopped and opened the little box that has Kevin's foot and handprints in it from the night he died. I think I've only looked at it once since he's passed. I stroked his little hand and foot impression left in the clay mold. Then I remembered how he would stick his little foot in your face so you could smell it. Then he would laugh.

Kevin, it's taking some time, but the good memories are starting to out number the bad. I washed your sisters hair with your shampoo last night so I could have your smell again. I didn't tell her that I wasn't using her shampoo. She noticed the smell too and knew it was your smell and she started to talk about you. She said how you liked taking your tubbies. Then I remembered the tubby we all had together and you pooped! It was funny. I'm sitting her looking at your picture. I miss your smile and your giggle. I miss you...

Monday, April 10, 2006 11:51 AM

I started back to work today. I didn't sleep to well last night because I knew it would be hard for me. And it was/is. I came through the front door crying and made the security guard cry too. I was here for about an hour and then I left to go to 9am mass that was for Kevin. It was hard. I hadn't been to church since Kevin's funeral. I sat in the back (so noone could see me cry.) I remembered his funeral and his casket being there. I pictured it vividly. I cried when mass started because they mention that the mass is for Kevin McLane - deceased. I know this is real, but for some reason, sometimes it's like it's not real and then I think about it and remember what has happened and get pulled back into reality. And then it hurts. He's gone, and sometimes I just forget. I am getting a little better though. I was able to sit in Kevin's room the other night and go through his pictures and laugh and smile. I had some tears, but not as many. I made a shadow box this weekend and Chris hung it for me yesterday. It has the 3 roses from Kevin's casket spray in the center and a pic of Kevin on the left and right side of the flowers. I looked at it this morning before work and asked him to give his mommy some strength. I talk to him in my head (and sometimes out loud). I thanked God in church this morning for giving Kevin to me. I'm not angry for Him taking Kevin away. I never have been. I said that I was happy that He had Kevin in his arms now and he was safe.

One person that cared about Kevin passed away last week after losing her battle with ovarian cancer. I know she is playing with him now. I've got faith - but when something like this happens, it does waiver a little. You can't help it. It didn't last too long with me. I think I'm better with that now. I'm going to go through the "what if's" and "where would he be now if this hadn't happened" issues. I still have some issues with guilt also, but its not nearly as bad as it was the couple of weeks after he died. Everyone tells me that we did all we could do. I hear that and I understand it - but it just isn't sinking in. We have all of the cards that everyone sent to us and I keep reading through them. I know all of you cared about Kevin. I feel bad for all of you because you had a loss too. I feel for his nurses, social workers and doctors at JHH that took care of him (and us) all this time. I feel for Nina. She was like a grandmother to Kevin. I was worried about how life for me has changed and it has changed almost as much for her. She took care of Kevin every day. He loved his Nina. I remember him saying her name.

I think I will be able to stay at work the whole day today. It's not so bad. Some people just don't know what to say - so they ignore me. Others tell me they are glad that I am back, but don't mention anything about my loss. And some act like nothing happened and its just a regular day. That's OK. Everyone deals with it in their own way. I've had enough crying for this morning anyways. I've got boatloads of e-mail to catch up on and piles on my desk to go through. I'm doing OK. I can do this. I'll check back in with you all later. God bless you all.

Thursday, April 6, 2006 4:14 PM

I've started reading that book about losing your child. I don't think I'm going to finish it. It's about what other people have written (most of them poets or authors) about losing their own children or what they would feel if they lost a child. I don't need that. I know what it feels like and it hurts. I don't want to read about other peoples pain. Or hear about it. That's why I'm not interested in a support group. There is an emptiness inside of me. I have Kevin in my heart - but it's just not the same as having him here.

Some stranger (a Jehovah's Witness) sent us something in the mail. One thing stood out to me. It was the story of Lazarus and how he had been dead for 4 days when Jesus resurrected him. It said that Lazarus had no rememberance of being dead. There was no mention of Heaven or Hell. There was nothing. Was that supposed to make me feel better? It sure didn't. There has to be. Kevin's life can't have been for nothing. There has to be more for him. He deserves this time to be comfortable and happy. He was happy and comfortable here on earth - but not all the time. I'll start to read my "Heaven" book today. That will make me feel better. I see that someone has donated to Caring Bridge in Kevin's name, but you are anonymous. Thank you for doing that.

Kevin, I've been having a particular memory of you all day today. Whenever I would have you on my lap and I would tell you to give Momma a kiss - you would lean your little forhead into my lips for me to kiss you. I can remember your warmth and your smell of lavendar. Then you would sit back up and smile at me. You are beautiful.

Tuesday, April 4, 2006 6:08 PM

Yep, it's a lot worse for me since we've been home. I was so busy before and now I just sit around and think about Kevin. Good things and bad things. Either way, it makes me cry. Chris and I went to his grave yesterday to take him some new flowers. They don't allow silk flowers during spring and summer and the deer eat the real flowers you leave there. I don't know what flowers deer don't like to eat. Mom said that Kevin would like to have the deer come over and eat his flowers. My sister agreed. She said, "Heck, just go ahead and spread corn meal all over his grave. He'd really like that!" Yep, I think he would. That kid would have the most popular grave in that cemetery. There are always geese running around there too. We checked with the cemetery staff to see if the proof of his grave marker was in yet. It wasn't. They said probably early next week. Once it is finalized, it will take 3 months to get it.

I start back to work next Monday. If I have trouble, I can go part time and ease my way in. I think my first couple of days will be the hardest. I went to the doctor today to get my blood pressure checked (like I was supposed to 3 months ago) and to talk to him about my depression. My blood pressure is high, but not so bad that I need medication yet. I have to have it monitored for 2 weeks and then go back for blood work. My weight is a big issue for that. He asked about my thyroid. I told him that wasn't my problem. My problem has been my schedule for the last 2 years. I told him that I was having problems sleeping. I understand that this is all part of the grieving process - but I can't go back to work like this. I cry constantly. And I'm so tired. My mind just can't stop thinking about Kevin. So I need help. He's put me on medication and it will take a few weeks to see if it works. I sure hope it does. I'm still not ready for any support groups. I don't want to be upset about other peoples loss too. I've got enough on my mind. But I have set up something one on one. The guilty feelings I have are horrible and I need to learn to let that go. I also keep seeing Kevin dying in my arms over and over. I'm glad I was there - but it isn't a good memory. I do think of happy times with Kevin. But those still upset me too.

I've got to run. Gracie is hungry. Chris and Gracie are doing well. Thank you all for keeping us in your prayers. Our love to you all!

Sunday, April 2, 2006 4:00 PM

Hi everybody - we're home. Gracie had a wonderful time at Disney. Chris and I had fun too. I still had my moments. Actually, I had several moments every day. I cried every night and had trouble sleeping. I would think about how Kevin would enjoy being there and seeing all of the wonderful things they have to see. I would see little boys his age and think of him. I would also see brothers and sisters playing together and think of Gracie being by herself now. I also felt guilty for going. It didn't feel right to me for some reason. But I knew Gracie and her Dad needed it and she was having fun.

Gracie talks about Kevin every day. On the plane ride down she was looking out the window to see if she could see Kevin as an angel. Actually, on the way home, I stared out the window a lot, looking at the sunset, thinking about him and wondering what it was like for him now. I find that my faith is also waivering just a little. I have always believed in Heaven, but I find myself getting upset and wondering if there is a Heaven. And if there isn't, I will never get to see my baby again. That hurts. I thought this vacation would help. I thought getting away would make me feel better. I had a really hard time coming home last night. I cried on the plane because it reminded me of the last time I was on the plane coming home from CA - without him. I was quiet in the car on the way home. Once we got home, I didn't really want to come in. I knew Kevin wasn't here.

I've given away all of Kevin's supplies and his extra diapers and wipes we had. I haven't done anything with his toys or his room. I don't think we will do anything anytime soon. I don't want to. His "B" is still on the back porch and his jumper seat is still hanging in the doorway of the living room. His little blue shoes are on the floor in the living room along with his blankets and cloth diapers. I even still have a pair of jammies laying over the back of the couch. We just had a roll of film developed before we left and there were a bunch of Kevin in there. One was him in the kitchen sink with shampoo in his hair. I twisted up two pieces of hair to make him look like he had little devil horns. I'll get those posted for you all so you can see.

I'm not ready to go back to work yet. I need a little more time - but I'm not sure if I can or not. I think about going and I start to cry. It should be easier for me at work. I will get used to it - but leaving for the day is going to be the hardest for me. I'm so used to coming home and going non-stop for the rest of the evening taking care of Kevin and Grace. Like I've said, it's my new life and I'll adjust.

We've received several more letters and cards in the mail while we were gone. We read them last night. You all have so many nice things to say to us about Kevin and how well we did as his parents. I don't know why it's not helping me feel better. I know deep down that we did a good job - but was it just not good enough? I guess all of my weird thoughts are all part of me dealing with the loss of my son. I went to the bookstore today to get some reading material to maybe help me understand what I'm going through. One is about faith and how it waivers during times like this. Hopefully it will help me get back on track in that aspect. Another is about Heaven. The other is called "A Broken Heart Keeps Beating: Dealing with the Death of a Child". I think I need all three. I still am not interested in any support groups. Maybe I'll change my mind later - but for now I'm going to read the books I bought. Speaking of books, I've been thinking about getting Kevin's journal printed up. I would like it to be organized by date, not chapters, and at the end of each day, put the guestbook entries you all wrote on those days. I want this journal to be around for Gracie and her children, and we can't keep the website running forever. And if you print it out, it's backwards from day one. I have the time now, but I just don't have the energy yet. I'm still going through all of those darn grieving symptoms. I'm going to make an appointment with my doctor for Monday or Tuesday. I've only been once since Kevin was born anyways, so I guess I'm due. I'm hoping he can help by giving me something for the sleeping issues. I guess all I can do is wait for time to pass so this gets easier. Everyone says it will...it's just going by so slowly...

Kev baby, I'm sorry you couldn't be with us on our trip. (Maybe you were.) Mommy, Daddy and Gracie thought about you a lot. I still feel like all this is a dream Kev and you are supposed to be here. Mommy gets so upset when she realizes that you are gone. I knew you were going to have a long, tough road ahead of you with all of the operations and illnesses - but I always thought you would pull through. Every time you got sick and they told me you might not make it - I ignored them. We always had hope. They didn't know my Kevin and how strong you were. You always did pull through - until March 9th. Mommy keeps running your last hour though my head over and over. I feel guilty for going to dinner earlier that night. You were comfortable and we had no idea what was in store. I'm sorry that I missed out on that time with you. I'm also sorry for not being with you 24 hours a day. I think about it often and I regret it. But there isn't anything I can do to get that time back with you. Mommy will have to learn to forgive herself for that. Mommy is having a really hard time without you Kevin. Really hard. I miss you SO much! So much it hurts.

Sunday, March 26, 2006 2:35 PM

We are getting ready to leave for our trip. Gracie is very excited. We are taking her to Disney World. Chris is happy too. So am I...but I'm not very excited. This is our first vacation since I was 3 months pregnant with Kevin. It is much needed - but it just doesn't feel right to me for some reason. I shouldn't feel guilty. I don't think that's it. It just feels out of place for me. Maybe as soon as we get there I will snap out of it. I know we will enjoy ourselves. I always pictured Kevin getting better and us going as a family - but that can't happen anymore.

I didn't have to cry myself to sleep last night. I cried - but then snapped out of it and watched some TV until I was so darn tired my eyes were burning. Gracie was tired too. We had gone to a birthday party. She had fun. Chris met a guy and was talking to him. Of course - that question came up..."So, how many kids do you have?" Chris said that he had two, but he had just buried his boy 2 weeks ago. Of course the guy was totally thrown. But he got to learn about Kevin and Chris showed him his picture. I don't like to have people feel bad about it - but I guess you can't help that. We aren't going to lie and say that we only have one. Because we have two! Gracie told me last night that she was sad because she didn't have a brother here to play with. Nudge, nudge. I don't know what we are going to do to change that. It's way too soon to decide. But then again, I'm running out of time. We'll just have to see I guess.

I've been working on my Thank You cards. I'm about 1/3 done. I just received the packet of cards from the funeral home that were on all of the flowers. I've got a lot of work ahead of me.

I'm gonna run and get my nails done before my trip and go check on Kevin. I'll let you all know how it went!

Kev baby - I wanted to tell you how proud Mommy and Daddy are of you. When I think about all of the people you touched in your short little life, it amazes me. Some people can't do what you did in a lifetime. You tought many of us different lessons. Now that you are gone, I'm faced with learning how to live without you. A lot of people are having to learn how to live without you. You were a big part of many lives. I see that people still want to check in on you daily like they used to. But you aren't there. We have a new life now. I wish I could change it. If I had to do it again, I would. I would take care of you every day for the rest of my life if it meant keeping you here with me. Mommy sure misses holding you in her arms. Having you fall asleep in my lap with your little mouth hanging open. We all miss you Kev. I miss everything about you. I love you baby boy. I'm sending my kisses!

Thursday, March 23, 2006 10:07 AM

Chris and I went to order Kevin's head stone for his grave. There is a new kind they just started to use 2 months ago. We picked that one. You give them 4 pictures and they etch the pics into the bronze. It will be beautiful. I told Chris that I want to be able to see his face every time we go. We've been to Kevin's grave several times. Just about every other day. I stand there and cry and cry. We have white long stemmed roses laying on his grave. It looks nice.

I wish I could say that I was doing better. But I can't. I know, I know...it will take time. I'm miserable. Kevin was my life. When he was here with us, there were so many things that we couldn't do because we had to take care of him. Now that he's gone, I don't want to do anything. I think of him constantly. And then I cry because I know he's gone. The other night I was laying with Gracie. Then I started to cry so I went in with Chris. I cried like a baby for about an hour. Out loud crying. I told Chris that I wanted to hold Kevin again. We were so tired when he was here with us - but I'd give anything to have that again. It's quiet here without him.

We received something in the mail from JHH. She sent us pamphlets on grieving and some information on support groups. One paper listed all of the emotions someone can be going through. I have all of them except for one. The one that says you could feel like the person is going to come back. I know he isn't. I'm not sure that a support group is what I need right now. I don't want to hear about other people's loss. I don't know anybody who can compare to our situation anyways. Their loss is just as real - but it's just not the same.

It will be hard when I start back to work. When I would get home, I was non-stop as soon as I walked in the door until the night nurse would get here. Our lives have completely changed and I have to get used to that. It will take some time for me. I think Chris and Gracie are doing well. Gracie and I play Barbie's - A LOT. We are looking forward to getting away next week. But I don't feel like getting anything done to get ready. I feel so heavy. I've been out and about at times. I started to tear up in the Kentucky Fried Chicken place the other day. People probably think I'm crazy. I wish I had a t-shirt that said why I was sad. Then they would see that I had a reason to be unhappy. I have so much pain inside and strangers can't see that. They just think I've got a crappy personality. Actually, right now I guess I do.

Kevin,
We miss you so much that it hurts. I talk to you all the time. I hope you hear me. I picture you running around playing in the clouds. Now you have the strength to do the things your body wouldn't let you do here. I can hear your voice at times. Calling me Ma-Ma. I smell you too. Kevin, you helped give us the strength to take care of you when we had you. But now Mommy just doesn't seem to have any strength left. I know you are better off - I do. But that doesn't mean that I can't wish that this didn't happen and you were still here with us. I loved taking care of you. I lived for it. I think about your smile and your giggles. Those memories will make me happy and smile one day without all the tears that come now when I think about you. I miss you baby boy. Every second of every day. We love you Kev.

Monday, March 20, 2006 7:25 AM

We want to thank every one of you who were able to attend Kevin's viewing and funeral. For those of you who couldn't attend, I would like to tell you about it...

Kevin didn't arrive into MD until early Wednesday morning. I have been having trouble sleeping since Kevin died. Maybe 3-4 hours a night. Tuesday night I stayed up until after 1am. I told Kevin that he should be on his way home by now and then tried to sleep. I woke shortly after 5am, with a better feeling because I knew Kevin was home. Chris, my parents, sisters and myself, went to the funeral home a little bit early on Wednesday so we could have some private time with Kevin. I felt like throwing up all day and the feeling just got worse as we got closer. My nerves were shot. We went in to see our little boy. He didn't look the same. He looked very different. He needed a lot of makeup and his hair didn't have any curls. I cried with Chris. Then I stopped. I don't know what it was. My nerves had settled and I felt better. Maybe it was because he was home? Maybe it was because it didn't look like him? Maybe it was because he had given me strength?

Kevin had MANY visitors on Wednesday and they were all appreciated. The many flowers were beautiful next to his silvery blue casket. Gracie came to the 7pm viewing. She cried with us. She stroked his hair and told him that she missed him. She was only going to stay for a short while and then go with a neighbor, but she wanted to stay. There was a video that we had made of Kevin that showed pictures of him with music we picked out and some home video that was precious. The video played over and over in a side room. The songs were, "What a Wonderful World" by Louis Armstrong, "Hot Potato" by the Wiggles and "Wind Beneath My Wings" by Bette Midler. Chris and I have watched it a few times since the funeral and cry every time. Kevin was such a beautiful boy. Chris, Gracie and I were the last ones to leave. We went home and I slept the most I had in a week. I think I was comfortable because I knew where Kevin was and that he was safe.

Thursday morning, a car picked Chris, Gracie and me up at the house. It took us back to the funeral home to spend a little more time with Kevin. Afterwards, we followed Kevin in "his special car" (as we tell Gracie) to the church. We passed the house first. They stopped in front of our home and opened the back door for a few seconds. Kevin came home that one last time. I won't ever forget that part and how Chris and I felt. Then we went on to the church for the most beautiful ceremony anyone could ever have. Fr. Mark did a wonderful job. I was happy to see my cousin Fr. Jim be a part of the ceremony also. Our family and friends helped with the readings and my sister did a wonderful job of giving Kevin's euology. There is so much to say about Kevin although he was only 2. He made us so proud. A poem was also written for Kevin and I would like to write that here for you. Kenny Kocsan wrote this for Kevin and it's wonderful:

There's another pair of eyes
Looking down from above
With a smile underneath
And two wings like a dove
There's a giggle in the wind
And some laughter in the rain
Just a little reminder
of Kevin McLane
He was a tough little man
And he gave it his all
He had everyone's help
But in the end he did fall
The lives that he touched
Will forever be unchanged
I'm glad that I met
Little Kevin McLane
His time with us now
Has come to an end
But he'll live forever
In our hearts, Amen

Ken Kocsan

It was beautiful Kenny, thank you very much!

I would also like to write what Chris and I had picked for the back of Kevin's prayer card:

God saw that he was tired
And a cure was not to be.
So He put His arms around him
And whispered, "Come with Me."

With tearful eyes we watched him suffer
And saw him fade away.
Although we loved him dearly,
We could not make him stay.

A golden heart stopped beating,
Hard working hands to rest.
God broke our hearts to prove to us
He only takes the best.

Author Unknown

(Chris and I have extra cards to send to those of you who couldn't make it. Just give us a call if you would like for us to send them.)

After the ceremony, we took Kevin to his final resting place. We had a police escort the entire way and at the gates of the cemetery, they stood at attention as we went by. Kevin's funeral procession was VERY long. More than a mild. I can't imagine how long it would have been if everyone could have made it to the cemetery. As we drove by people, they were pulled over and they all stared. I'm sure they were wondering who all of this was for. They knew it was someone special. But I wish they knew exactly how special he was.

Waiting at Kevin's grave was Judy's gift to Kevin. A bagpipe player. He played "Going Home" as Kevin's casket was walked to the grave. Then he played "Amazing Grace" at the end of the graveside ceremony. Chris, Gracie and I stayed a little bit longer than everyone else to say goodbye to Kevin. I didn't want to leave him. I watched as we went by and he was sitting there all alone. I remember thinking, "Who's going to watch him?" "Are they just going to leave him there by himself?" I can't stop being protective of my little boy.

We all had lunch together afterwards and then went home. The next day there wasn't much to do. We spent time with Gracie all day. (And every day since.) I just don't know what to do with myself now. The last 2 years of my life were running around and taking care of Kevin. I don't have that anymore. I feel empty. When we had Kevin, there were so many things that we couldn't do. Now that he's gone, I don't want to do anything. I got through Wednesday and Thursday OK, but now I'm having a hard time. I cry myself to sleep almost every night. I cry driving down the road or watching TV. Even in the bathroom. I cried on Friday night because it was so windy and cold outside. I remember thinking of Kevin being out there all alone. But I know he's not really there. He's in a warm, bright place, running around and playing. The three of us went to his grave on Saturday. All of the flowers that were left were gone. I almost walked right past him because he almost wasn't noticable. There was only a small patch of dirt. We will take flowers for him today. We have to pick out his marker.

I have to run, Gracie is hollering for me. I will update every week or so to let you all know how we are doing. We are going to take some time off of work and get away with Gracie.

We are so happy to have shared Kevin's life with all of you. Kevin changed many of us, including myself and his father. We were so blessed to have him. I just still can't get it through my head that he's gone. And every time I do realize it, I cry.

Kevin,
Mommy and Daddy miss you more than you can imagine. We love you and think about you every minute of every day. We have laughter and tears when we think of you. You are with God now and you are warm and safe in His arms. You are our special little angel now. Mommy and Daddy much rather have you here, but we know that God wanted you home with Him. We love you baby, and we will see you again one day. Hugs and kisses!

Monday, March 13, 2006 7:59 AM CST

REMINDER: The funeral plans have changed. The viewing will be WEDNESDAY from 3-5pm and 7-9pm and the funeral will be THURSDAY at 10:30am.

Chris and I got to see Gracie yesterday for the first time in 3 weeks. The second sentence out of her mouth was saying that Kevin was in the hospital and the nurses were taking care of him. We had to tell her that Kevin wasn't in the hospital anymore. I told her that he was in heaven. Her eyes started to well up with tears. I told her that he just got too sick and the doctors couldn't fix him. I said that he was tired and God wanted him in heaven and he had died. She cried out louder and then told us that she didn't want to talk about that. She settled down a few minutes later. Then she went to play with friends outside. She would come back in the house and say, "My brother died right?" Later on she said, "You don't have a baby boy anymore, because he died." I told her that I was still his mommy and I still had 2 babies, but one isn't with us anymore. I've thought to myself...am I the mother of two or just one? What do I say when people ask me about my children? I guess I'll figure it out as time goes by.

Gracie and I had a tubby together last night. She started to cry again off and on. She said that she misses her brother. I explained that we were going to say goodbye to him in a couple of days and everyone was going to be sad. She speaks of him often and tells us she loves us every 5 minutes. She's full of hugs and kisses.

I still have problems with sleeping. I have to take pills, plus wait until I'm so tired that I will fall asleep as soon as my head hits the pillow. I tried to lay down last night to fall asleep and I just couldn't. I kept seeing Kevin, sick in his crib. I opened my eyes and it was 11:11. Kevin's birthday. Last night seemed to be especially hard for me. I started to feel guilty. I felt guilty about having Kevin go through all of the pain that he did. I kept seeing him get stuck with needles and IV's. I saw his scars and just couldn't get out of my mind the pain and suffering he went through. I need to stop writing about that now, I'm getting upset.

I sent Kevin's picture and death notice to Pumphrey funeral home so they can place the ad in the Washington Post and put Kevin on their website. Their website is:

http://www.pumphreyfuneralhome.com/

Kevin is already listed. I just checked and now I can't see what I'm typing! He's so cute. The funeral home site will give you directions. They will have valet parking for the viewing. If the valet parking is full, you can park on the street the next block down or park in the lot of the church across the street.

They said that they will call us when Kevin is picked up and they are close to home. They will bring him by the house and pause. He'll come home one last time...

We'll have lots of pictures and a video of Kevin at the viewing to share with everyone. He's so funny. We just watched the videos yesterday. You're gonna love 'em.

We'll see you all on Wednesday for the viewing. I'm not going to write in again until after the funeral. Take care everyone.

Sunday, March 12, 2006 12:57 PM

AMENDMENT: The funeral plans have changed. There are problems in getting Kevin home when we expected. The viewing will be WEDNESDAY from 3-5pm and 7-9pm and the funeral will be THURSDAY. I will confirm the funeral time this afternoon and update again. I've very sorry for the change, but there are obviously issues and obstacles in getting Kevin home where he needs to be.



Chris and I stayed at the hospital with Kevin just for a few moments longer after I updated you that night. We returned to our hotel room at didn't get to sleep until after 3am. Then we got up at 7am and started to pack. The hospital social worker called us to work out the arrangements for our flight home and how Kevin was getting home. Unfortunately, Kevin can't come home until Monday evening. We told her to offer them more money to see if they could get him home sooner, but they just can't do it.

The ride home wasn't too bad, but it was difficult. As soon as we dropped off the rental car, we got a shuttle to the airport. Another rider asked us where we were from and what we were doing in CA. Chris and I were a little tight lipped. It didn't take too long, but that poor stranger was crying by the time we got out of the shuttle. I don't like for people to feel bad. But I think I need to get over that.

Chris and I were very tired on the way home. But I couldn't rest. I just couldn't keep my eyes closed. I kept seeing Kevin dying in my arms. I kept reliving that moment. Believe me, I'm not sorry that it happened the way it did. It is just going to take lots of time for me to get used to it. Then I would try to close my eyes and think of good memories with Kevin. That didn't help either. Those memories should make me happy, but all they did was make me sad. Sad that my baby is gone. Sad that I won't ever be able to have any more of those moments. I cry a lot. At any time. I never know when its going to hit me and I either just shed a few tears or cry constantly for minutes at a time.

Chris and I meet with the funeral home tomorrow at 11am and the church tomorrow afternoon. We have most of Kevin's arrangements already made from the time we thought Kevin wasn't going to make it. Only a few things need to be changed. I have one request for the funeral home and I don't think they will have any problems fulfilling my request. When they go to pick Kevin up at the airport, I want them to call me on their way back. I want them to bring Kevin past his house. I want to stand on our porch and watch my little boy go by. I want him to come home one last time. That will make me comfortable knowing that he has come home.

Kevin's viewing will be Tuesday from 3-5pm and 7-9pm at Pumphrey Funeral home. It is located at 300 W. Montgomery Avenue in Rockville. It is near 270. The funeral will be at 10:30am on Wednesday at St. Mary's church in Rockville. That is 600 Veirs Mills Rd. St. Mary's is located near the Rockville Metro Station. After the church ceremony, Kevin will be taken to his place of rest at The Gate of Heaven Cemetery in Aspen Hill. We would like to invite all of you afterwards for lunch. We will have directions to the social hall printed for you. I hope you can come to see Kevin one last time and help us to celebrate his short, precious life. There are many of you who loved Kevin that don't even know Chris and me. Please know that we want you to come so we can meet you all. Everyone will need this closure.

I just can't believe he's gone. I woke up yesterday and wanted to call to check on him out of habit. Certain times of the day are a little harder because of our routines. I know what medication he is due for right now. I have all of his things around the house. I see his face everywhere. Even when I close my eyes for a second. Chris and I will never get over this - we'll just get used to him being gone. It gives us a little bit of peace knowing that we will see our beloved again one day.

Our love to you all! We have a few really rough days ahead. We'll all get through this together.

Friday, March 10, 2006 1:12 AM CA time

After we updated, they gave Kevin Fentanyl and he didn't respond well. His blood pressure came down pretty low. It freaked us out to be honest. But it was corrected. The nurse had given it to him while he was asleep because she needed to weigh him and didn't want to bother him with moving him. It was written that Kevin not get any more Fentanyl unless it was specifically written for and cleared by the doctors. His pressures came back up and he was stable. Chris and I stepped out for dinner.

We came back to his room at 7:30pm and he was in pain. He kept stretching his arms and legs and he would whine. We asked for Fentanyl knowing that it could cause his pressures to drop, but his comfort was our main priority. The docs only wrote for a tiny bit. It didn't help. They gave a tiny bit 3 times and then we asked for more. We wanted something that would make him comfortable. The doctor wrote for a dose that would make Kevin sleep. He also wrote for a sedative that would make it so Kevin wouldn't remember what was going on. Chris and I knew it was the end. We gave up. And so did Kevin. He was tired and he was ready. We turned off his dialysis and his IV meds. We were going to just sit and hold him. Chris went to get a pillow for us. As soon as he stepped out, and they turned off the IV meds, his heart rate started to drop fast. I called Chris back in and we were at Kevin's side. I picked him up in my arms as our precious little gift took his last breaths. It was so painful for us to see this happen, but we are so happy that we were there. We didn't want to miss this for the world. We were there when God brought him into our lives and we were blessed to be there holding him when God took him out. Our little boy died at 10:18pm PST (1:18am EST).

I just sat and held him. I rocked him and sang to him and cuddled him and stroked his face and hair. I knew he was gone, but I kept waiting for him to take a breath. A breath that I knew wouldn't come. After a while, the nurse took out his IV's, central line and dialysis catheter. And Chris and I gave him his final bath together. We're OK. The tears flow and then stop for a moment. We know our little boy gave the fight of his life, but it was time for rest.

Chris and I have been holding Kevin since he died. We will be leaving the hospital soon. We will be coming home tomorrow with Kevin. It will be hard to leave him here. I don't want to go. But our boy will be with us in spirit as we make our way home. He knew how much he was loved when he left this world.

Thank you all so much for being a part of this journey. We will update and let you know when the arrangements have been made. Our love to you all. God bless.

It'll be OK...

Thursday, March 9, 2006 11:25 AM CA time

Yesterday, the PICU attending told us again at rounds that he was willing to turn Kevin's monitors off to make it more comfortable for Chris and I. We opted to leave them on. We are interested in Kevin's blood pressure, heart rate, etc and want to keep an eye on it. He also brought up the problems it could cause for Kevin if he were to do chest compressions if Kevin's heart stopped. I just tuned him out. We had already stated that we didn't want Kevin recussitated so I didn't feel there was a need for him to reiterate that. He also said that Kevin is on a "code" dose of dopamine (which keeps his blood pressure up.) He said that they were going to wean him down to 3 eventually and if something were to happen, he wouldn't increase it. (I didn't like that decision and I didn't like the fact that he took that upon himself to make that decision.) After rounds, he and Chris spoke for a few minutes. It was mostly negative thoughts on his part, so again, I ignored him. I'm sorry, but I don't need this crap rubbed in. I'm totally sure that isn't his intention. But nonetheless, I don't want to hear it anymore.

Also in the meeting, he said that Kevin was on the dialysis and he would leave him on for that night. Chris and I thought about it and prefered that Kevin stay on the dialysis. We wouldn't go to the next step with it, but as long as he was on it, we were leaving him on it. The attending renal doctor came in and we told him that we wanted him to stay on it. He agreed. He told us that he had thought about it himself and was going to speak to us about keeping Kevin on it. Taking Kevin off of the dialysis would kill Kevin within 24 hours. That's like pulling the plug. We aren't going to do that. If Kevin's heart stops, it stops. That will be it. But until then, we have this little strand of hope that we are clinging to and we will keep clinging until the end.

Chris and I felt comfortable enough to go have lunch yesterday. Kevin didn't have any morphine, but stayed asleep the entire day. We aren't sure if his body is telling him to rest or if this is a side effect from his condition. At lunch, I brought up the dopamine with Chris. I understand trying to get Kevin down on his dopamine level, but if something were to happen and Kevin could benefit from having it increased again, then increase it. We aren't asking for other emergency medications to be administered. We aren't going to go that far with this. But if something is already hooked up and it might be able to help - then help him damn it. That is our decision, not the doctors. If it doesn't help, then fine, we tried. So we spoke to a different doctor when we got back and he understood and agreed. We aren't naive about any of this and we aren't stupid either. We've been dealing with this for over 2 years now - we know a little.

A little baby died in the room next to Kevin's yesterday. It was very difficult. I think it makes us realize what we could be going through eventually. We saw what that family went through yesterday and felt so sorry for them. We prayed for them last night.

The doctors asked us to join in for their rounds on Kevin today. (I think that would be a good thing for JHH to do too.) It wasn't bad news. Kevin is hanging in there. He's actually doing a little bit better. His blood pressure is getting better and stabilizing, his oxygen saturations are getting higher, his kidneys are a touch better and his overall blood work is better. They are going to switch his morphine over to fentanyl because it would be better for his kidneys. He needed it twice last night and we figured out that it was because of his IV in his hand. When the nurse started a medication today, he screamed. I asked her to check it. She said it flushed OK, but we are now running it slower and he's comfortable with that. She checked the chart and he required the morphine at 1am and 5am - the same time his IV medications were started. We informed the doctors about that. They are going to check Kevin's immune levels and if they are OK, they are going to stop the antibiotics. He's had a 15 day course. We also brought up that Kevin has purple dots under his eyes, arms and chest. They said it could be because his platelet count is low and they would check it. He can have some blood products to correct that if needed. I noticed some form under his right eye the day before, but it had gotten worse. I thought it was because we took his tube out and maybe the tape on his face irritated his skin. We took the tube out for his comfort and we were led to believe that it wouldn't be much time left for Kevin.

When I first had to write and tell everyone what Chris and I were told, it was so difficult. We hate to have people hurting over this - but we appreciate you all sharing our experience and caring so much for Kevin. That first night, after updating all of you, I layed in bed crying. I remembered how we have already gone through this once before and then he bounced back. I wanted him to get better again, but I didn't want to feel like the little boy that cried wolf. We still don't know what is going to happen with Kevin. But our little strand of hope has gotten thicker and our grip on it a little tighter after this morning. I've got a smile on my face today. I feel better. I think it just may be a day without tears.

I'll give him kisses from all of you. I'm in that little boys face constantly giving him tons of little kisses and telling him how strong he is and how proud we are of him. And how much we love him. I remembered yesterday, in the middle of our prayer with Deacon Don, one time when Kevin smacked me right in the face and Kevin thought it was funny (I didn't). I thought it was a funny memory (and a strange time for it to pop up) - but I wish he was able to do it again. And he just may be....let's give him some time and lots more prayer. We'll have Kevin show these guys what he's made of!

Our love to you all!

Tuesday, March 7, 2006 3:14 PM CA Time

When we arrived this morning they were just having their rounds and were in his room. One doctor stayed behind to let us know that Kevin wasn't doing well. Even though he has started to urinate, he is having problems with an infection. He forewarned us that the information that we would receive in the meeting today would be negative.

We went to the meeting at 1:30pm. The PICU attending was the person who spoke the most. They said that Kevin won't be able to have his heart surgery due to the infection and kidney issues. The renal doctor said that he doesn't think Kevin's kidneys will recouperate at this point. They don't feel that Kevin is going to survive. Not even to get him home. Even if they try to get him through this, and put him on a respirator, they won't be able to ever get him off. They don't feel that he will survive a trip home. Chris and I don't want Kevin to die here - but we don't have a choice at this point. They said that they could prolong the inevitable - but we don't want that. Our main concern is Kevin's comfort.

We feel that trying to keep Kevin alive at this point would be selfish. We want him to rest. We don't know how long Kevin has at this point. But the doctors are going to turn off the alarms in his room and Chris and I will be able to hold him. He will be comfortable.

This is the most excruciating pain that either of us have ever felt. We know how much you all love Kevin and we so appreciate everyone going through this with us. We just can't let him go on. We know you all understand. It hurts so much.

I'm not sure when I will update again. I will be keeping in touch with family that will handle this for now. We need to go be with Kevin and will stay at his side until the end.

He'll be OK. His pain will be over. He is still the strongest person we've ever known. And we are so happy that God brought him in to our lives no matter how short and no matter all of the heartache it's caused. It was worth it.

Take care and God bless you all.

Monday, March 6, 2006 12:52 PM CA Time

Well, when we got back to Kevin's room he was more swollen and his diaper area was bright red. The rest of his body was red too, but not as bad as the diaper area. It wasn't a diaper rash because nothing is coming out to give him a rash. They said it could be lots of things. They decided to put him on another antibiotic along with the others he is aleady getting and an antifungal medication. They said it could be colitis from the wound on his hiney that was causing the reaction. They also stopped his dialysis after only a couple of runs.

So, they called us last night at 11:30pm and told us that his potassium levels were getting dangerously high again. They were controlling it with medication. The social worker called us this morning and told us that the doctors needed to speak with us about Kevin's plan of care. Of course, we got worried. All of the doctors were around Kevin's room when we arrived. GI, Renal, Cardiology, PICU, Social worker, etc. It gets so overwhelming. The renal doctor that is coming on rotation for the week is the #1 guy for the peritineal dialysis. We were told that he writes the books on it so he is the best. He said that Kevin will get through this and his kidneys will work again, but it is going to take a lot of time. They are doing the dialysis again, but it is very gentle. That's why it will take longer. But they need to go slow with Kevin. It makes you feel more at ease when they tell you that they think your son will get better. Chris and I just didn't think it would take this long or get this bad. Our number one concern for Kevin is his comfortability. He gets morphine as needed. I think it makes him feel a little worse when he knows that we are there. He starts to cry and puts his arms up for us to hold him. But we can't. We just put our faces close to his and whisper to him. Sometimes he calms down, but other times you just have to walk away from him and let him settle down. He just won't settle as long as he knows you are right there.

The doctors will be having a meeting with Chris and I tomorrow afternoon. There will be a representative from all teams covering Kevin right now. Of course, Chris and I don't like meetings. Not when it comes to Kevin. Every time we were pulled into a conference room at JHH, it was bad news. They assured us that wasn't the case here and it was just to fill us (and each other) in on what the plan is for Kevin.

From what we have overheard, they will probably still be doing Kevin's heart surgery, but we just don't know when he will be ready.

Thank you all so much for your thoughts and prayers. Kevin will get through this - he always does. He's the toughest person I know - or will ever know. He's starting to pick up chicks here at Stanford now. They love his curly hair. Don't worry JHH nurses, you are still his favorites! He's got your picture in his crib.

Take care and we send our love to you all!

Sunday, March 5, 2006 5:17 PM CA time

Chris and I had thought things had slowed down yesterday afternoon when we had written. But it got a bit worse. Immediately after we returned to Kevin's beside at 7:30pm, the doctor was in there and he told us that Kevin's potassium level had risen to a critical high. It could stop his heart. He said that Kevin needed the dialysis that evening. Chris and I were knocked for a loop. We had been told so many different things during the day. The last being that they would give Kevin some time on the new medication. They no longer had time.

Then, a cardiac surgeon came in the room. He said that they needed to take the fluid out of Kevin's belly - now. He also stressed about how sick Kevin is. He said that he needed to put a pigtail in Kevin's abdomen to let some of the fluid out. But the problem was that Kevin's liver was so large that this was very dangerous. If he were to make a mistake, it could kill Kevin. He said that they were bringing in a sonogram machine up to find the best place to put the tube. There were 4 doctors trying to decide the best way to handle this for Kevin. There was also an issue with how to sedate him. They were contemplating on knocking him totally out and putting in a breathing tube. But there were drawbacks to anything they were to do. They decided to give him only Fentanyl with no sedation. He would only get a local anesthetic. They also needed to put an arterial line in so they could draw blood for labs since they were no longer able to get it from peripheral sticks. During this time, they also gave Kevin a medication (100 cc's) as an enema to try to get the extra potassium out of his system. It would sit in his intestines and draw the potassium into his gut and then he would poop it out. (He hasn't as of yet, but his potassium is lower.)

So, they filled Chris and I in on every aspect and we asked our questions. They started to get ready and then we saw them bring in the crash cart in case something were to go wrong. Chris and I had to leave and wait and pray that everything went OK. We sat outside the PICU and waited. It was only about 20 minutes and we saw the guy with the sonogram machine go by. Then we saw 2 of the doctors. They said that it went well and Kevin was fine. The other two doctors were still in with Kevin trying to get the arterial line in. They said that they got over 250ml of fluid out of Kevin's belly immediately. There was more, but they didn't want to take out too much too fast. They wanted to give Kevin's system time to realize and adjust to the fact that the fluid was taken out. They expected to have a full liter by morning. Chris and I left around 12:30am.

We came in this morning and were told that Kevin had an OK night, but had issues with pain early that morning. The nurse said that she couldn't control him and she was scared that he would pull out his IV's. So they decided to give him morphine and it worked. We have requested it one other time since we've been here today. He has been comfortable and sleeping most of the day. He has woken up several times crying, but is calmed by me or Chris.

Kevin didn't need the dialysis overnight, but he has just started it. It's called paratenial dialysis. (I am probably spelling that wrong.) It is when they put fluid into Kevin's belly by gravity and then let it sit for 40 minutes. Then they let it drain out. When it drains, it takes out the bad stuff from Kevin's system such as acid, ammonia, potassium, etc. He will get one round each hour for at least 24 hours. We don't really know that the next step is from here. The renal doctors think that this, along with the new medication introduced last night will help. Kevin hasn't peed all day. He also received red blood cells which should make his kidneys happy.

So, we just wait and pray. By the way, we learned something about his kidney function today. We were told with the first renal failure that his kidneys would come back to full function. We assumed that was 100 percent. For a kid like Kevin, with heart and liver issues, he isn't and probably never was at 100 percent. He was more likely around 70 percent. Which he was when he arrived. So that was the best Kevin's kidneys could be. So when his kidneys do get better, he will go back to 70 percent. If he gets his heart and liver fixed, he could go to 100 percent.

That's it for now. We need to go back and check to see how his dialysis is going so far. It shouldn't be uncomfortable for him at all. He slept while he was getting set up.

Take care and we'll write again tomorrow to give an update that will hopefully be a little less dramatic! He is still sooo grounded!

Saturday, March 4, 2006 7:07 PM CA Time

Today has totally sucked. Chris and I received a call early this morning from the doctor stating that he was getting even worse. The diaretics that they were trying just aren't working. He has gained over 4 pounds in the last 36 hours. His testicles are so swollen that they are starting to bleed. We are trying a new "formula" on his hiney and doo-dads to try to get his skin to heal underneath. They are the size of a medium orange. He is very uncomfortable.

The doctors came in to speak to us this morning. The spoke of hepatic-renal failure and the possible need for dialysis. But there was a concern that he would never be able to come off the dialysis if his liver was failing. He would need the transplant first. But he would need heart surgery even before that. Dr. Hanley probably wouldn't be able to take this on. It was a very emotional morning for Chris and I. It's amazing how crying can really drain you. You get so tired. After the doctors left the room, 2 stayed behind to comfort us. One we hadn't even seen before. The other was the one who has been taking care of Kevin the last week. She was crying too. Boy, that's not a good sign. But it's nice to know that she cared that much. They spoke about putting a catheter or tube in Kevin's belly to get rid of some of the fluid. They said that could take pressure off of his kidneys and then maybe they would start to work. If that didn't work, then it would be dialysis. A GI doctor came in to speak to us about hepatic-renal failure. (The first time a GI doc has really spoken to us.) I told her that I knew what it was and I didn't think Kevin was in liver failure. She said that she didn't think so either. Well, they did a sonogram and didn't see any huge pockets of fluid in his belly that could be removed. They also saw that he was not in liver failure. So where does that leave us?

Now Kevin has been transferred to the PICU. It is much safer for him to be there. At one point, I looked out of Kevin's room in the PICU and saw 3 doctors on the phone at the same time all talking about Kevin. They seem to be on the ball and trying to get him better without dialysis. They are going to try another diaretic. One that they haven't used often at all. They really want to get him through this without going through dialysis. The problem for Kevin is access. He is on medications that can't be mixed with others and they can't be interupted. He has the central line and one IV in his arm. They are talking about putting a femeral line in his leg. They are discussing it as I type. We will have an answer when we go back to the PICU. (We were kicked out for shift change.)

Today was so hard because you can't help but think about what could happen. If Kevin is going to die, we don't want it to be out here. We rather be home and close to friends and family. I thought about what the plane ride home would be like without him. I just don't think I could get through that. But I'm pretty certain that it won't happen. Kevin will get through this. The doctors think they can get him through it. Even Dr. Jerk is optimistic. By the way, I won't call him Dr. Jerk anymore....Dr. Perry seems to have come around these last 2 days. But man, he sure was a prick those first couple of days. I'm glad he turned around. Chris and I are much more comfortable and appreciate his communication. Chris has even told him that. I hope he stays that way for everyone's sake.

Chris is here with me while I'm typing this...he wants me to mention that although Kevin is so sick and miserable, he still wants to be held. The nurse even told us that most kids don't want to be touched, but Kevin wants to cuddle. He holds his arms out for you. I put my arm under his head and neck and then kinda lay over him with my arm over his belly and rock the bed. He feels like he is being held. He calms right down. He is resting a lot which is what Chris and I prefer. We don't want him awake if he is miserable.

OK, it's almost 7:30pm now so Chris and I can go back into his room. We had a really rough day and would like to get out of here a little early tonight. He has his first male nurse tonight so I think that Kevin's doo-dads will have extra special care since the male nurse can relate. Know what I mean? But he doesn't look much like a cuddler. Kevin will be just fine. I hope we don't get any calls in the middle of the night. I want to come in tomorrow and see tiny testicles in a urine soaked diaper!! By the way, he's grounded -again.

Take care everyone. We know you are praying for our little guy.

P.S. - Leisa in Australia, it was nice to hear from you! You have a handsome little guy there! Can you tell me what a fortnight is? I've been trying to guess, but I give up! I'm glad to have a new person in our group of friends. Thanks! :)

Friday, March 3, 2006 6:07 PM CA time

Kevin has been out of it the majority of the day. He seems to be resting comfortably. He hasn't gotten any pain meds in several hours. I think his body is making him rest. He opens his eyes every now and then and yells out. But then he goes right back to sleep. They got another IV in so they could run dopamine for at least 24 hours straight to get some flow through his kidneys. They are using the central line for his antibiotics and diaretics. They got the new IV in on the 2nd try. He seemed to be so out of it that it didn't bother him too much.

Chris and I noticed this afternoon that his left side of his belly is more swollen than the right side. His left thigh is also more swollen than the right. The entire thigh is really hard, but the right one isn't. The dopamine has been running for several hours now and doesn't seem to be making any difference. I know, it takes time, but he is really backing up with fluid. He's more swollen than this morning.

They are going to stop the IV fluid and run his feeds starting tonight. Only at 45 an hour. The renal doctors said that was enough for now because he doesn't have much output. They said that they do believe that this is temporary and Kevin's kidneys will recover. But when? It took almost a month to get out of the hospital last time. Dr. Perry came in today and said that they cut back the fluids to make Kevin's heart less stressed and lungs, but it adversely affected the kidneys. He said that he doesn't think they will be able to get him to where all of his organs are happy at the same time. (He didn't use those words, but you know what I mean.) I didn't want to read in to what he was saying, but you can't help it sometimes. I was waiting for him to tell us to go home and let Kevin die because they couldn't do anything. But he didn't say that. They don't know if Kevin will be able to have his heart surgery or not. They just can't say at this point. We understand. We just wish we were home dealing with this rather than being here. It stinks being alone out here. But at least it's the two of us. Sometimes only one parent can stay. I'm not sure how long Chris will be able to stay out here with me. We'll just take it one day at a time I guess. I can't worry about that right now. Besides, I'm a big girl (no pun intended), I can be by myself if I need to.

We did check in to the Guest House here on campus this afternoon. It's pretty nice. This should be our last move while we're here. It's about 4 miles away.

(I'm sorry, there is a man singing American Indian songs next to me. It sounds very nice - but he's throwing off my concentration.) I'm gonna go ahead and sign off....

We appreciate your prayers for our little man. (Or, not so little man since he's so darn puffy!)

Friday, March 3, 2006 10:08 AM CA time

Things haven't been going so well for Kevin recently. His kidneys are shutting down. He is very swollen and his urine output is almost nothing. We had spoken to the renal doctors yesterday when he started to get swollen. We asked what his kidney function was. It is 20 to 30 percent. It's even lower now. He was about 70 percent when he got here. Chris and I are sad, angry and frustrated. When they told us that they would be decreasing his food to 45 per hour and putting him on those diaretics, we told EVERYONE that we were concerned that it would affect his kidneys. We told EVERYONE that JHH said he needed 70 an hour to keep give his kidneys the fluid they needed. They didn't listen. And this is what happened. They didn't bother to contact the doctors at JHH before they made such a big change for Kevin. NOW they are going to call. That call should have been made a week ago. They aren't familiar with him. They tell us how complex he is. We know that. They should have been in touch with JHH the entire time since he is so complex. We feel that this could have been avoided and Kevin is suffering for their decisions. Yes, they aren't perfect. Yes, they are trying to make him better. We are fully aware of that. We just don't feel that this needed to happen. Kevin is suffering. So are his parents.

We don't know what's going to happen now. It took a month for him to get discharged from JHH with the last renal problem. He can't have surgery with kidney problems. Chris and I think Kevin will pull through this, he always does. But this is such a major set back for all of us. We miss Grace terribly. We hate to think that we will have to be away from her even longer than expected. I guess we can't worry about that right now. We need to concentrate on getting his kidneys to work. One step at a time. Unfortunately, we are stepping in the wrong direction.

Kevin is on IV fluids right now and no food. He is on pain medication every 4 hours. His tummy girth has grown 5 centimeters overnight. His testicles are the size of an adult's because they are so full of fluid. He's just miserable. So are we. I just feel numb.

I'm going to run back to be with Kevin and Chris. Take care.

Wednesday, March 1, 2006 12:00 PM CA time

Kevin is still doing well. He has started throwing up. Not too much, but this morning he had blood in it. It was frustrating to walk in this morning to find Kevin smelling like vomit. The nurse walked in and told us that he was due to be changed and left. I guess since we arrived she is no longer on diaper duty. That seems to be the norm here.

The docs came for rounds and told us that he was having problems breathing this morning and he had a chest x-ray. He seems OK now. He's still breathing as fast as he has been the last couple of weeks, but he's comfortable.

The renal and GI docs are going to start getting involved in his care also. We spoke to the renal doctor this morning. The medication that he is getting for his kidney function will probably be stopped now. He was getting it to keep his CO2 levels up, but now they are too high. That means that his kidneys are probably fully functional again. (Keep your fingers crossed!) We explained to her that we were concerned with him getting dry because they have cut his feeds down to 45 an hour and he is still getting those 2 diaretics. She said she understood and will look into his blood work and get back to us today.

Other than that, everything is OK. We get frustrated sometimes, but we get over it. I am glad that we are both here working together to take care of Kevin. Kevin was playing with Chris' glasses this morning. He kept taking them off his face and then he would laugh. He's back to playing peek-a-boo too! So he's feeling good although his WBC count is back up to 28. We have no clue as to why that's happening. We just hope it will go down soon so he can get back on the surgery schedule.

It's Ash Wednesday and Kevin received his ashes today with Chris and I. I've only had one person tell me that I had dirt on my forehead so far. I'm getting ready to go to the cafeteria so that will be interesting. :)

Take care everybody!

Tuesday, February 28, 2006 11:24 PM CA time

I got lucky to get a computer so early today. Kevin is getting better each day. Last night he needed to get labs around 8pm to check his clotting time prior to going to the OR for a new line. I asked if they could wait until 3 or 4am so they could also get the morning labs at the same time. We don't want him stuck twice if he doesn't have to be. The doctor said she needed the labs that evening and she would think about maybe not getting the blood from him in the A.M. They had a hard time getting the blood they needed from Kevin last night. He had to get stuck twice in the inner side of his right foot. It was very painful for him. I told the nurse that I wanted to speak to the doctor because we were going to refuse the labs in the morning. I know what his labs have looked like every day and there are a couple of things that needed to be watched closely because they were high, but they were making changes in his meds to take care of that. So they could wait until after his line was put in. So, the doctor came and I told her that it was too difficult and we were refusing the labs unless she could give me a good reason why they couldn't wait. She couldn't. So, no A.M. labs were done.

When we came in this morning, the nurse told us that he has been canceled for the OR today. His line is working. We have no idea how that happened. The doctors said it just happens sometimes. It was flushed and drew back blood twice with no problems. Kevin didn't flinch so it didn't hurt him. We spoke to the doctors at rounds and asked that they write in Kevin's orders that his line is to be drawn back on prior to each IV medication given. They agreed. We said that we know it's not their protocol, but it's Kevin's protocol.

He's giggled a bunch today. He's been playing with blocks, toys and watching the Teletubbies. But he's getting tired so easily and gets grumpy quickly. We let him rest as much as he wants and then play with him again when he wakes. We also bought special bubbles. They don't pop very easily and you can hold them in your hand a few seconds after you blow them. Kevin is enjoying them. He's hungry right now too because they held his feeds for surgery. Those will be started again as soon as they make the food. His WBC count has also gone back up. Chris and I don't understand why it's getting high again, but the doctors said that it can fluctuate. We are used to it only going down. But they aren't worried and he has no fevers. The rest of Kevin's blood work looks pretty darn good for a kid with a cruddy liver. And his clotting time is normal so that Vitamin K that was given last week is still working.

We have no idea when the surgery will be. We're just concentrating on getting him feeling better and that WBC count lower.

Thank you all so much for checking on us. Chris and I enjoy reading the notes you all leave for us in the guestbook. Take care!

Monday, February 27, 2006 3:43 PM CA time

Things have been getting a little better here - but they still aren't the greatest. We've had some issues with the nursing and those get addressed. Yesterday Chris and I went to check in to a cheaper hotel. (Boy, it stinks going from 5 stars down to 1 1/2.) The nurse we had hadn't changed a single diaper since we'd been there. We left to change hotels and we got lost and were gone almost 2 hours. Chris had marked the diaper Kevin was in to see if it was changed while we were gone. And the nurse was aware that he has a horrible rash. Do you think she changed it? Heck no. He has diarrhea and is on 2 different diarretics to make him pee more. His diaper was beyond loaded when we got back. I asked her if it was changed and she said it wasn't because he was sleeping. Gee, it's a good thing she isn't the night nurse or he wouldn't get changed at all because he is sleeping! Then Chris and I dawdled to see if she would change it since we were back. Nope. Later on, the lead came off so it wasn't picking up his heart rate. Chris asked me to leave it off to see what they would do. He even went out to the nurses station to see if it was being monitored. It showed a flat line. Nobody even asked if they could assist Chris who was just standing there. He walked away. Finally we got tired of listening to the alarm and fixed it ourselves. Nobody had bothered to respond. What if his heart had stopped beating?

Then, Dr. Jerk comes in today. (Cath doctor) He is the attending for the next 2 weeks. (Lucky us.) The nurse was doing something with Kevin so the doctor stood there for a minute and then walked out. He never said a word. I looked at her and said, "So what was the point of that visit?" She was taken aback by it. She finished and left. She had gone to tell him that she was finished and he could go back. He did. He walked in and said, "I heard you had a question." I asked about the central line being replaced. He said he didn't know anything about it. I asked the difference between a Hickman and Broviac line. He said there was none. I asked how Kevin's labs looked to him. He shrugged his shoulders and said, "I don't know." I said, "I have no other questions then." He didn't move. So I said it again. Then he left. Chris said, "Have a nice day!" and the guy responded, "Yep, you too" and shut the door. What we really wanted to ask him was "Why the hell are you even in this room?" Gee, if I just want someone to stare at me funny, I will just walk outside naked dude! It was very uncomfortable having him in there. It's like we were wasting HIS time. He wasted ours. Chris and I don't care if he ever comes back. We will just deal with the regular pediatrics team that watches him at night. That dude needs a wake up call.

Kevin is doing better today than the last few days. He needed to get a new IV last night and required a little bit of blow by oxygen. He also pulled his NG tube out today. It was OK because we were going to have them change it tomorrow when he goes to get the central line taken out and a new one placed. I would rather him get it done while he is asleep, but he took it upon himself to get it changed sooner. He did just fine getting the new one in. He didn't squirm and fuss as much as usual.

He threw up today too. Only once, but it was a lot. He had been doing so well with it. He hasn't thrown up since.

They cut his feeds and increased the lasix. They are thinking about switching him to a new formula too. We understand they need to get the fluid out of his system so his breathing will get better, but they need to come up with something for long term. He can't go home on feeds at 45cc's an hour. He won't get the calories or fluid that he does need. It's too early to worry about that I guess.

So, there still are some frustrations for us here, but we are voicing our opinions and we are being responded to. We just don't want to be labeled as the parents that can't be pleased. Or troublemakers. But then again, if that is what it takes to get Kevin the care that he deserves and needs - then so be it. He deserves the same level of care when we are gone that he does when we are here to give it to him ourselves.

Gracie is doing well. We speak to her a couple of times a day. Her Gan is teaching her some Italian now. She's hysterical. We sent her a little carepackage in the mail that she got today. She was very excited. We have already started getting together the next package. She's handling the separation well. Better than us actually.

It's raining out here a lot today. It should rain for the next few days. The are calling it a "major winter storm" on the news. It's getting a lot of coverage. We think that's kinda funny. It's just rain!

Well, I better get back to check on that boy and his daddy. Take care!

Saturday, February 25, 2006 1:47 PM CA time

Kevin was moved out of the PICU last night at 6pm to a regular floor. It wasn't a good experience. Today is MUCH better, but last night stunk. We don't know this place and how it works here, but we are learning. We had gotten to the hospital yesterday morning at 6am without much sleep. So we were very tired. We got on the floor just before shift change at 7pm. We know how that goes. But we didn't see a nurse until 8:00 and that was for less than a minute. He was very late on his medications. She came back almost an hour later with some meds. She used his new central line to push an antibiotic through by hand. He screamed. (Can you figure out where I'm getting ready to go with this one???) He settled down and I noticed light, bloody spots on his gown where the line is. All of the antibiotic that she pushed through was going directly into the tissue in his shoulder. It was infiltrated. They got an x-ray (eventually). We asked why it wasn't pulled back to check it prior to medication going in. They don't do that here. It's not their protocol. Well, if they did then she would have seen that it wasn't working. During all of this, Chris requested to speak to the nursing supervisor. She came up, but didn't come to speak to us. We waited another hour and a half and she didn't bother to come speak with us. We were exhausted and it was after 10:30pm. We got Kevin situated enough that we could go rest.

We hadn't known that we were being moved to the regular floor so neither one of us was prepared to stay over night. We will take turns staying with him. Kevin isn't a kid that you can rest around though so it makes for a very long night and a sleepy next day.

The surgeon came in to look at his central line. He said that since he has an infection right now, they can't pull it. (By the way, his WBC count went down to 23 so the new antibiotic is working along with the one he was already on). If Kevin is going to get another central line, they will wait and pull this one at that time. If he doesn't get a new one, they will wait until his infection is under control and then will pull it.

Kevin is doing pretty well. He is still having issues with swelling that seems to come and go. His hands and legs are extremely swollen right now. His attitude is pretty good, but he's not himself. He'll get there again eventually. But at least he isn't constantly screaming like the other day.

Time for us to go. Take care and we'll write Monday if not tomorrow! Take care and God bless!

Friday, February 24, 2006 8:50 AM CA time

We didn't sleep well last night. Especially me. I didn't trust the alarm clock so I kept waking up to make sure I wasn't oversleeping. We needed to be here by 6am in case his surgery time was changed. He was supposed to be the 2nd case, but that changed. Then I woke Chris up at 3:45am by mistake. He needed to get up at 4:45am. Oops.

We did get here by 6am. Kevin is much happier today than he was yesterday. Yesterday he was extremely swollen because the fluid in his blood vessels was leaking out into the tissues in his body. They are giving him albumin 3 times a day to get that fluid to stay in the blood in his vessels and then lasix to get rid of the extra fluid left in the tissues. He was so crabby yesterday. Nothing seem to make him happy except pedialyte. But he couldn't get too much of that because of the fluid issues.

When we came in this morning, the swelling in his face and eyes has gone down considerably, but he is still swollen in other areas. His weight is up by 2 pounds from when we got here. The surgeons aren't worried about that.

We were told this morning that Kevin was switched to first case. Great. Our day wouldn't be as long. Then we were told it was back to 2nd case and would be around noon. Then we were told that his white blood cell count had gone up from 21 to 28 and the surgery has been postponed. So it won't be today. I'm not even sure if tomorrow is an option. They haven't said anything about that. They had started him on an antibiotic yesterday, but his WBC still went up. I'm not sure if they just need to give it time, or switch to another antibiotic. Normally Kevin responds well to antibiotics. Chris and I are thinking that could be part of the reason he was so nasty yesterday (because of the high WBC count/infection.)

Chris and I aren't disappointed. They are doing what is best for Kevin right now. We totally understand.

The anesthesiologist did mention to us that he was concerned about a few different issues with Kevin for the surgery. The most important being that with the one lung collapsed for surgery, Kevin's sats might not tolerate it. The other being problems with his liver and kidney function. We think he'll be OK in that department.

So, hopefully Kevin will be put on an antibiotic that will make a difference to his WBC count and he will get happier and easier to control. At least he will be able to eat today.

We will let you know tomorrow what the plan is. We figured that Kevin wouldn't have his surgery until we were out here for at least 1 week so we are still ahead of the game! Take care and we'll update soon!

Thursday, February 23, 2006 10:58 AM CA time

Honestly, yesterday was one of our hardest ever. Dr. Hanley came to us and told us that there was debate at their conference yesterday morning on whether or not they should even intervene with Kevin. (We've heard that before from JHH.) He said that if we were to proceed, Kevin has a long uphill battle. Kevin would need 3 heart surgeries. The first one would be to correct the left lung. Then we would go home for a few months to recover and then come back here for the right lung to be repaired. Then go home again for a few more months. Then we would need to come out again for another cath. They would measure the pressure in his heart and lungs. If it is too high, then we would be at the end of our road and nothing more would be able to be done for Kevin. If the pressure was OK, then they could close the hole in Kevin's heart and he would be eligible for a liver transplant. He also said something about Kevin regarding his survival chances from the transplant. Chris and I misunderstood him. It sounded like since Kevin had the Kasai procedure when he was 2 months old, that his chances of having a successful transplant would be low. I thought, "then why in the heck do they even do Kasai's if it will ruin kids chances for transplant?" He said that Kevin also has a higher risk for infection. He told us that nobody will blame us if we don't proceed with any intervention for Kevin. He left us with a tough choice to make. If Kevin's chances for a transplant were gone, then what is the point of proceeding? He left us alone to think and told us to get back to him with our decision.

Then we spoke to a GI doctor. We had misunderstood Dr. Hanley in that regard. It was because of the Alagilles that Kevin was at higher risk for infection, but infections are treatable. They said that many children have transplants that have gone through the Kasai procedure. So, in that case...we are moving forward. His first operation is tomorrow and Kevin has a 75-80 percent chance of survival. We've had odds worse than that in the past.

So many things go through your head in this situation. He's come so far. He's beaten so many odds. But is enough enough? We told Dr. Hanley that we understand he is complex and the road will be rough - but Kevin has overcome so much in his little life. He can't be underestimated. There were a lot of tears for Chris and I yesterday. We have made our decision and we think we are doing what is best for Kevin. But so many different things pop into your head as the day and night wear on. We figure that if we don't do anything, Kevin is going to die and it will be a long, painful road for him. It isn't going to get any better for him, only worse. This way, at least we are giving him a chance. His Nana said that once he gets through all of this, he won't remember the pain. I hope she's right.

I've also thought that if Dr. Hanley thought Kevin's case was hopeless, then he would have thanked us for taking the time to come out here, wished us well and sent us home. He didn't do that. This CAN be done. And our son is a kid who has the will to get through this. His future is in God's hands. It always has been. But God is giving Chris and I the strength and wisdom to make the decisions for Kevin. As soon as the decision was made yesterday, I was at peace. I will be nervous tomorrow - but I'm not scared. Kevin always comes through.

We don't have a surgery time set yet, but I will let you all know as soon as I find out. Take care and God bless you all! We know he is in your thoughts. Our love to everyone!

Wednesday, February 22, 2006 12:40 PM CA time

Kevin got through the cath well. It was right around 3 hours. They said that his results were the same as they were last May. Not much change at all. Dr. Poop-for-Personality was not very encouraging. What a way to screw up our night. Luckily my sleeping pills arrived with Chris so I slept well last night.

Oops, Chris just called. Dr. Hanley is coming to speak with us in 5 minutes. I'll update to let you know what's going on! Pray hard people!!

Tuesday, February 21, 2006 2:49 PM CA TIME

Hi everyone! It's been difficult trying to get access to a computer. Leaving JHH was very emotional for us yesterday. Kevin had a large number of nurses and doctors that were there to see him off. The flight nurses that picked him up were pretty impressed with all of Kevin's fans. The priest came in before we left and we had a prayer service for him. It was nice. He annointed Kevin's forehead with oil and told him to have a safe trip and Kevin shook his head "no".

It took about 25 minutes to get to the airport. Kevin got loaded and was in a carseat on a stretcher in the aircraft. He had an RN and a medic sitting near him. Mommy had to sit behind him. Boy, it was really cramped. REALLY. I got to see what it looked like looking out the front of an airplane as it took off. Kevin did well during the flight - but he cried a lot. He required oxygen most of the trip and was excessively thirsty. He was pretty swollen when we touched down in CA. We had to stop in South Dakota to refuel. It was a bit chilly there. It took about 6 hours flying time all together. It was pretty loud in that little airplane so it was hard to rest. Plus there was no legroom. The nurse and medic did well with Kevin. The nurse was his mommy for most of the trip. There were certain times that I could hold him, but it wasn't comfortable.

We got to CA and in the PICU around 6:30pm (CA time). I was pretty tired. I had to speak to a lot of doctors, but it went smoothly over all. I was comfortable leaving him and going to the hotel to rest. I was very tired. I had to take a cab to the hotel. The bed in the room is awsome. But I don't think we will be staying there too long. It's too expensive.

Chris will be here later this afternoon and he will have a rental car for us to use. I'm so glad. The taxicab ride over here this morning was scary. That taxidriver was lucky that I didn't pee my pants in the back seat.

So, Kevin will be going for his cath around 3 or 4pm CA time. I was told it could take 3-4 hours and they don't have a plan as to what they would be doing. Maybe stinting, maybe not. I was told the cath doctor is really good. One of the best. I met him briefly. Briefly was long enough. He had the personality of a fur ball. But hey, if he's an excellent cath doctor, then that's all that matters.

Then he told me that if Kevin is eligible for surgery, he would go in for that on Thursday! I've heard so many good things about Dr. Hanley. I haven't met him yet. Before we left JHH, Dr. Ringel stopped in to say goodbye and he told me that when he spoke to Dr. Hanley that he was very confident that he could help Kevin. It made Chris and I feel better. Let's get this boy fixed and ready for a new liver!! Kevin's case will be reviewed tomorrow and we'll have an answer then.

So, things are going well and moving along pretty fast. I'll keep in touch as often as possible. There are only 2 computers here and the teenagers seem to get to them first and stay on a very long time.

So, we're doing great. Mommy is tired, but I'll probably be on track after tonight. Yesterday and today are long days.

OK, I need to run back and check on our Kevie. Take care!!

Tuesday, February 21, 2006 12:11 PM Pacific

This is Aunt Linda updating for Karen.

Karen & Kevin have made it safely to CA. Kevin will be having his heart cath in a few hours. Karen will try to update tonight.

Saturday, February 18, 2006 2:29 PM

It's a lot to take in isn't it? We are all very excited (and a bit scared) about going out to CA. Dr. Schwarz spoke to Dr. Hanley and he said that he didn't have any openings this coming week, but maybe he could shuffle something around the following week. It would give their staff time to get to know Kevin and learn about him. He agreed that now is the time for Kevin to come.

Kevin and I leave Monday morning via air ambulance. We have to stop twice for fuel stops. Kevin isn't allowed to eat while traveling so an IV needs to be put in Sunday night. He will get IV fluids during the trip. I can feed him once we touch down in CA. Chris will fly out Tuesday morning and meet us at the hospital.

Chris' work really jumped on this and got us a place to stay, Chris' airfare arranged and a rental car. They even hooked me up with a cell phone since I don't have a personal cell phone. They are excellent.

The hospital has been great arranging this too. The poor coordinator, Karen, has had a very emotional ride herself the last few days trying to get this going for us. We appreciate her getting this done.

So, I am spending the day getting Kevin packed and myself packed for a couple of days worth. I have another suitcase for the rest of the stuff I will need. Chris can bring my suitcase with him when he comes Tuesday.

We are scared, nervous and happy all at the same time. Our heads seem to be spinning. There are so many things that go through your mind when something like this pops up. I pray for a good outcome for Kevin. I was thinking this morning in the shower "What if he doesn't make it? How will I tell everyone? They will be so crushed." Just then, the shampoo bottle fell down and hit me for no apparent reason. It was in it's normal spot and shouldn't have fallen. I think it was a sign. Someone was telling me to stop thinking like that. And I did.

We will miss Gracie terribly. But she will get through this better than us. We have plans to go to the Disney Princesses on Ice tomorrow night. She'll have loads of fun.

I will update when I can out there or have someone update for me. I will only have access to a computer at the hospital (I'm assuming they have a library or something.) If you all want, you can call my parents for updates: 301-279-2407. But I will do my best to keep you all informed. I will write on Tuesday to let you all know that we got there safely.

We know we are in your prayers!! We thank God for how far He has taken us. Our journey isn't going to end just yet...God bless.

Friday, February 17, 2006 11:48 AM CST

BREAKING NEWS!!!!
Hello! This is Julia RN, one of Kevin's girlfriends. Karen asked me to update the page with this huge news. Kevin is going to California on Monday, February 20th. Medical assistance is paying for the flight to Stanford for just Kevin and Karen. Chris will follow Tuesday or Wednesday when he gets a flight out. Kevin will stay at Hopkins through the weekend and then leave from here on Monday. Don't tell Kevin that he is leaving or else he'll think of something to keep himself with his girlfriends. Please keep him in your thoughts and prayers.

Thursday, February 16, 2006 6:50 AM

Still no news on CA. The nurse told me yesterday that she knew Dr. Schwarz and another doctor were working with the insurance company and trying to get this trip to happen now. The nurse paged Dr. Schwarz at 5:30pm, but didn't get a response because she was in a family meeting. So hopefully we will hear something today. The waiting stinks.

Kevin was very thirsty again yesterday (after they doubled his diaretic medication.) I knew that would happen. I told the doctor the day they did it that it was a huge jump to double it. (Again, what do I know?) Now Kevin has to have blood work done to check his electrolytes. That should have been done early this morning. I don't know why they insist on getting blood in the wee hours of the morning when people/kids are trying to sleep.

Kevin's day nurse is going to the hospital again for us today. Either me or Chris will go tomorrow. Nina is off so we need to find someone to watch Gracie. She can't go to the hospital now because of flu and RSV and no kids are allowed to visit.

I still feel icky when I think about going to CA now. But several people have told me that this wouldn't fall into place right now if it weren't the right thing. I agree...but I still get queasy!

Wednesday, February 15, 2006 6:48 AM

The doctor called me yesterday at work....I was expecting her to tell me that Kevin is ready to come home. He is, but that isn't what she wanted to tell me. She asked if I had the authorization ready for his cath in CA. I told her it expired but the renewal would be approved in 24 hours. Then she asked about taking a commercial flight to CA. I told her that we were trying to get another way out there so he wouldn't get sick. She understood. I asked her why she was asking these questions and she said that Dr. Schwarz thinks he should go to CA now directly from JHH. It would be a hospital to hospital transfer and then insurance would probably pay for the medical flight. I felt queasy immediately. I said, "I thought you were going to tell me that he can come home." She said that he could come home, but they want to see if they can make this trip happen and they were in contact with Stanford about it. It may not work out and if not, he will come home tomorrow or Friday. If he comes home first, that will give us more time to fatten him up before surgery. But it also gives us more time for him to get sick again. Honestly, my main issue is that it gives us more time with Kevin. Something could go wrong with the surgery and we could lose him. That is always a big concern of ours. He is a very high risk for surgery. It would be time taken away from us. I'm getting sick to my stomach again just thinking about it.

In the meantime, I am working with the social worker at the hospital trying to get the anesthesiologist, cardiologist and GI doctors to write summaries for Kevin so we can take those with us. I need that since Dr. Hanley isn't calling JHH to get a report on Kevin and JHH can't call him because of ethics issues. But maybe if he is tranferred, JHH can call him? I dunno. I'm going to get this done just to cover our butts.

Megan has Kevin today. I told her that Kevin's home nurse will be in around 9am to help out. I feel more at ease knowing that someone extra is there to help out and watch Kevin. He will have someone in his room with him constantly. I just ordered 3 Wiggles tapes for him. I'm getting a bit worn out on the 2 that we have.

The nurses tell me that they all visit him and play with him. They don't get to see Kevin so happy and playful because he is always so sick when he's there. Anna Ruth asked if she could take video of him being fun so she could show Catherine when she got back from vacation (that poor girl is in Belize for a week). I'm glad they all have a chance to see how Kevin is when he is feeling well. I miss him. But we need to work too. We've both missed a lot of work recently and need to try to be there. (This is me trying to talk myself into staying at work today rather than going to the hospital - which is where I rather be.)

I will let you all know what's happening as soon as I hear. I don't know what to have you pray for...for him to get to Stanford now or to come home now....You pick one and we'll see what happens. I'm gonna go take some Tums. Take care!

Tuesday, February 14, 2006 6:46 AM

Sorry about that everyone. Kevin is in the hospital but is doing OK. We had him at Shady Grove on Thursday afternoon and we were told at 9pm that we needed to go to JHH. Dad went with me to Shady Grove and stayed until around 8pm when Chris got home from work. Kevin had received a sonogram, blood work, an IV, cultures and chest x-rays. He was overloaded with fluid and he is so delicate that JHH wasn't comfortable with letting him be treated at Shady Grove. So the doctor at Shady Grove spoke to the doctors in the ER at JHH. JHH wanted him to be transported by ambulance. Nope. Been there - done that. We kindly explained to the doctor that we would take him ourselves and requested that the IV stay in. She agreed and we went home first to make his formula (JHH nutrition dept was closed and wouldn't be able to make it). We also got some clothes and videos because I knew he would be admitted. I dropped Chris off at home and picked up the night nurse. I figured I would be home before her shift ended. That way Chris could get some sleep and he could go to the hospital on Friday and I would catch up on sleep. Kevin was very well behaved in both emergency rooms. Peek a boo and smiles. He was just having major issues with his breathing and swelling.

The nurse and I got to JHH at midnight and Kevin was admitted by 4:30am. He was so good until I put him in the crib in his room. Then he was PISSED. He knew that I was going to leave him. I stayed until 5:15am and then had to leave him crying. I knew he would settle down shortly after. We got home a little past 6am. Then the nurse decided she wanted to look through the Avon catalog at home. Uh, excuse me...I'm tired.After 10 minutes I told her to lock the door after she left because I was going to bed. She also wasn't much help at the hospital. She kept talking and I couldn't get any rest. I took her because I figured she could watch Kevin a little bit and I could lay my head down on the bed. Nope. Lesson learned.

I got to bed around 6:30am - and I couldn't sleep. I was up at 10am and knew I needed some more rest. Chris went to the hospital by himself on Friday. He went alone again on Saturday so I could take Gracie to ballet class. Sunday, the roads didn't get plowed until noon. We had called the hospital several times that day and knew he was well taken care of (and entertained.) I found out yesterday that when it snowed Julia sat him in the window with his hat on. Then a guy from the building next door spotted him and they played peek a boo for a while. She said that Kevin would pull his hat down over his eyes and then push it up really fast and the guy in the other building would jump back and react. She said that Kevin really liked it. It sounds cute doesn't it? I know there were lots of ladies keeping him company over the weekend.

I went in yesterday. His IV came out just before I got there. He was getting his antibiotic at the time so he ended up having to get 2 shots instead. They had tried twice for another IV but couldn't get it. I spoke to the doctor later that afternoon. His white blood cell count was high (24K) but the antibiotics weren't having any affect on it. Plus the cultures didn't grow anything. So we agreed to take him off the antibiotics and not put in a new IV at all. I think he will be home in the next couple of days. His x-rays are clear and the swelling is almost gone. He is still breathing faster than normal but he is comfortable.

Chris and I are both at work today. We hired Kevin's day nurse to watch him for 6 hours at the hospital today (and tomorrow). We have to pay out of pocket, but we have both missed a lot of work these last 2 months and I know Kevin is feeling fine so I'm not worried (and I don't feel guilty). I know he will be well taken care of.

I just called to check on him and the nurse was busy but they told me there was no change. I will call back later. He's doing well and we expect him home real soon.

Thursday, February 9, 2006 1:14 PM

I'm leaving now to take Kevin to the hospital. His breathing has gotten worse and the swelling is the same. I'll let you know how he does. I'm taking him locally first and if he's too bad off, then we will transfer to JHH.

Thursday, February 9, 2006 7:11 AM

He's got me a little worried this morning...the night nurse woke me up at 2am saying that he had a fever and she had cold compresses on him. She said it was 100 but she didn't deduct the 1 degree for taking it rectally. (I told her not to take them rectally on him because it wasn't necessary.) I wouldn't want something shoved up my butt unless it was totally necessary and I figure the same goes for him. I didn't worry much about the fever, but I started to pray. Abby came back today. She will be working Thursday's and Friday's with Kevin. I held him this morning. His face, eyes, hands and feet are very swollen and his belly is very large. He had some extra fluid yesterday because he was excessively thirsty, but it wasn't too much and it stopped after I got home that evening. So I don't think that is what caused the swelling today. But I'm just hoping that after he wakes up and gets in to his routine that the swelling will subside. His breathing has also been rapid the last few days. He's not in respiratory distress - but he's not too far from it. I'm not quite in hospital mode yet, but it is in the back of my mind.

He also got his vitamin K shot yesterday. That will be given every 2 weeks now. I talked to them to make sure they were using the smallest needle possible and it would only be one shot. Last time when hospice did it, it was 2 shots and they use HUGE needles. It was very painful for him and he bled a lot that time. This time was much better for him. He gets the shot in his thigh. He can't get it IV anymore since there is no access. But this way will work out OK.

Pray for that little guy. He needs to stay home and stay well. He just isn't himself and doesn't seem as comfortable as he can.

Wednesday, February 8, 2006 6:44 AM

He went up to 99.5 last night...but it went away again. I don't know what's going on with him. I don't think he's getting any more teeth. He's so off track that I don't know what to expect for milestones, such as new teeth. He was crabby when I got home from work yesterday. He stayed crabby for a little while. It was hard to entertain Gracie and have a cranky baby. I got dinner ready and had to put him down and let him cry until I got her dinner cut up. She watched Bambi II while she ate dinner. It was a big help. I had tried to lay him down to rest because I thought he was tired. That didn't work. So I held him over my shoulder and he was quiet. Then I started to eat my dinner directly out of the pan on the stove. I thought "wait a minute - I can't do this". So I got a plate and sat at the table with him on my knee. He settled down. Kevin ate 2 pieces of rice, 1/2 a Cheerio, a teeny bit of baby food bananas and sauce from my chicken. (Gives new meaning to eating like a bird doesn't it?) Then he polished off an Avon catalog for dessert. Chris came home as we were finishing up and he held Kevin while he ate. Kevin wanted to feed himself and play with the food. We just put rice on the table and watched him play with it. It was pretty entertaining.

He stayed awake for us until 8pm and then went down quietly for a rest. He woke up when the nurse came at 9pm.

Gracie went to bed later than her normal and I told her that she was going to be mean in the morning. She said she wouldn't. She even woke me up at 4am and wanted to have a conversation! I kept telling her to go back to sleep and she kept talking. "Mommy, I'm talking to yooouuuu!" Then it was time for her to really wake up. Very unpleasant. Poor Nina. I told her that Gracie was to get a timeout when she got to the house. The nurse was pretty amazed to see Gracie act like that. She has a daughter too that is younger than Grace. She'll see. It'll happen to her eventually.

Kevin's day yesterday was better than the day before. He didn't sleep too well again and was held a lot. I think he's smart enough to get them to hold him when he wants. He's no dummy.

Each day seems to be better than before. I hope he keeps it up. I think it will get even better after his arm fully heals. That is giving him pain. He's such a tough kid.

I have to run. Take care and have a great day!

Tuesday, February 7, 2006 6:43 AM

That little bugger was warm when I got home from work yesterday!! Then he got even warmer was the evening went on...but he only got up to 99 degrees. I have to call the hospital if he hits 100 degrees. He slept a lot yesterday too. He napped at 6pm for an hour and then was ready to go back to bed at 8pm. I let him. I kept feeling his forehead until the nurse arrived. He felt cooler by 8:30pm. The nurse said he was cranky all night and didn't sleep much. So he will sleep a lot this morning. We go back for a GI appt on 2/24 and will get some blood work done then. I hope he stays healthy and out of the hospital.

Nina took Gracie to the doctor for me yesterday afternoon. She had been up the night before until after 2am with an ear ache. A bad one. She was so upset that I couldn't make it go away. She said that I was the mommy and I was supposed to fix it. I did ear drops (twice), Tylenol and a warm compress for her ear. It finally worked and she slept. The doctor looked in the other ear (that she didn't complain about) and said it was infected! Then she looked in the ear that was hurting and said "OH MY GOSH!" That one is really bad. So, we've got 2 medications for 10 days plus the cold medication for day and night. She's not a good medicine taker. I was thinking last night that it would be easy if she had a feeding tube I could just push it in!

I got a lot of things straightened out yesterday with the hospital and pharmacy. It was a bit of a mess. People there cooperate and get back to me in a timely manner. Did I tell you all that they had him listed for Senokot? They told me yesterday that he didn't need it. That wasn't my question. I wanted to know who put him on it and why. They had a good reason: The pain team wrote him for that as standard protocol in case it is needed since the pain medications tend to constipate people. So he never got it (I hope). It was just written that he could have it in case he needed it and the nurse wrote it on his discharge papers as if he were taking it once a day.

I had to change his feeding tube yesterday. The one he had in was only 1 week old, but the port kept opening and the food would leak out. I don't mind keeping an eye on it, but I don't think some of the nurses would and it would leak into his bed. That's happened before - more than once. So Nina held him down while I put a new one in. It wasn't too bad. I just hate doing that to him.

He wasn't in the best of moods last night. I guess because he wasn't feeling well. We'll see how today goes. He's very content when you are standing with him laying over your shoulder. But you get tired after a while. I try to play with him and Gracie at the same time, but if he's crabby, it's really hard. Gracie is jealous right now. Hopefully it will pass. We do our best.

Today is Pop's birthday! Happy 68th Pop!!
It is also my 15th anniversary working at NIH. (Boy, I'm gettin' old!)

Sunday, February 5, 2006 9:18 AM

He's home and he's very happy. We got home yesterday around 2pm. Things fell right in to place. We are getting pretty good at getting things back on track after he comes home. We had a few issues. His food formula that they gave us wasn't calculated correctly and we had to do some math to get that straight. And when the discharge papers were looked at closer, we noticed that they had changed the doses on 5 of his medications and added 2 new meds and didn't bother to let us know. I need new prescriptions for all of those. I called the hospital this morning and spoke to the GI doctor. He told me we could keep Kevin on the doses he is currently taking until I speak to a pharmacist tomorrow, but the 2 new medications couldn't wait. I gave him the number to Safeway pharmacy and hopefully they will be able to fill them. I'm not too confident that they can, but we'll see. They should call in an hour or so to let me know.

We had the nurse last night that was with Kevin during the day when he was home in early January. She sucks. I figured night watch would be easier for her because there aren't as many medications for her to give. (Plus I had already drawn them all up for her.) When I walked in his room this morning it smelled like throw up. The nurse that took over for him said that he hadn't thrown up. Well, he had. And the night nurse didn't bother to change his clothes or the pillow case. His shirt was wet all the way down to his waist and the pillow case was just turned over. Gee, do you think that if she were to throw up all over herself that she would want to lay in it? Do you think she would let her own child lay in it? I don't think so. And that's not good enough for Kevin. I don't want her back and I'm going to call the nursing company tomorrow. She had plenty of chances. (The hospital just called and they can't find anyplace to fill his medications. He said we should be OK until tomorrow.)

Our day nurse quit (Abby). Well, she got another case. We already have a replacement that is familiar with Kevin and we are comfortable with her taking care of him. Abby will still work on Friday's.

Kevin is using his broken arm. They haven't really been keeping it wrapped at the hospital. It starts to hurt after a while and I put the ace wrap back on. I'm trying not to give him pain medication. Putting the bandage back on really seems to help him. I kept it wrapped all night and let him loose about an hour ago. He's comfortable. He's been playing a lot since he's been home. He's also been very clingy and wanting to be held. I totally understand...but Gracie doesn't. She was tired his first night home and was very whiney. I think part of it was him being home. It'll be fine.

Kevin's feet are both swollen, along with one hand. I mentioned it to the doctor when he called. I told him that I would watch it and call if it got worse. I'm not interested in taking him to the hospital for that. His hand had an IV in it so that should go away. I'm not sure about the feet. His abdomen is also bigger than normal. We will measure it to keep track.

He will have several follow up appointments. Cardiology, Neurology, GI and Orthopedics. Cardiology and Ortho are both in 2 weeks. I'm going to try to get them both on the same day. I'll need lots of luck for that to happen. Well, I'm gonna go play with Kevin and Grace. Take care everyone!

Friday, February 3, 2006 7:34 AM

He still doesn't have a fever!! Just one more day and he will be home!! I was very excited this morning when I woke up just thinking about him being home.

He didn't have to get any sticks this morning for labs. He finally had a break. His rash is getting better and he isn't requiring as much pain medication for his arm. I think we have to go back to orthopedics in 2 weeks for a check up to see how it's healing. We will also have a neurology follow up alone with GI and cardiology. That's a lot of trips to Baltimore - but at least it isn't every day like it is now.

Keep praying that his "bug" is gone and his fever won't return. We want to keep him home.

Thursday, February 2, 2006 7:15 AM

His nurse told me yesterday evening that she can't remember the last time he was in such a good mood. He was playing, smiling and babbling for her. She said his rash is still pretty bad, but it's shrinking with the yeast ointment. She said that the doctor's finally had a plan...Kevin would be on the antibiotics for 48 hours (which ended last night), and if he stayed without a fever for 48 hours afterwards, then he could come home. That would be Saturday sometime! I hope they've fully treated him and that fever doesn't come back. He will be so happy to be home.

Keep your fingers crossed! NO FEVERS!

Wednesday, February 1, 2006 7:38 AM

We still don't know what the plan is. They overloaded him on fluids yesterday so he is requiring oxygen. The nurse is going to try to wean him off of that today sometime. He is off the IV fluids and his blood work looks OK. The IV in his foot started leaking last night so they took it out and put a new one in his hand. (The same hand that is healing from the last infiltration.) He was liking having that hand free because he could grab his "B's" with it and play with toys. Gosh - I just want him better and at home. The cultures they have taken still haven't grown anything on them. So they will probably take him off the antibiotics. I want him to come home, but I want him to stay to make sure he doesn't get sick again. If he comes home and the fever returns, he will need to get a totally new IV put in. This reminds me of his first summer when he had the endocarditis and it wasn't diagnosed properly and we had 11 admissions in 3 months. Which finally resolved with 12 weeks of antibiotics.

I think Chris is going to stop by the hospital today after work. I was thinking about going but the engine light in the car came on this morning. I want to get that checked before I drive it to Baltimore. Breaking down on 95 would be SO unpleasant. Speaking of unpleasant, Gracie's cold has gotten worse. She was up most of the night with her coughing. So that meant that her attitude this morning stunk! She realized that she was being mean to me when she was putting on her shoes. She told me that she would come and give me a hug when she was finished putting them on. That was nice. Especially since she kicked me when I had tried to put on some shoes that I picked out. I knew she was tired and sick.

So, overall Kevin is doing better. He was laughing and smiling some yesterday. Chris said that he was cranky when he was there with him. I think Kevin gets cranky when we get there because he wants us to hold him. We totally understand and we do whatever he wants. His rash is still bad, but it's shrinking. So the yeast cream is working for him.

That's the end of my report for today. I hope to have some answers for tomorrow. Take care.

Tuesday, January 31, 2006 10:31 AM

Kevin was pretty grumpy yesterday when Chris and I went to see him. We spoke to the doctors about our concerns with the antibiotics being stopped and she told us that there was no difference between a 10 day course and a 14 day course. But they put him back on Monday morning because of the fever. The fever didn't subside until last night. he was very hot to hold yesterday. They took cultures and as of this morning they still haven't grown anything. That means that they will probably take him back off the antibiotics. Then what? I don't know - and I don't think they do either. We also told the doctor yesterday that Kevin was thristier than normal. She ignored me. So now he is dehydrated and on IV fluids again. And his blood needs to be taken more often to check his electrolytes because of that which means more pain for Kevin. (Why didn't she listen to me? What the hell do I know? I'm not a doctor.)

So, where are we now? I have no clue. Kevin's nurse told me that she overheard the doctor talking about getting ID involved again. And that poor kid has a diaper rash over the entire area that is covered by his diaper. Part of it looks like yeast so they ordered medication for that yesterday afternoon. It's awful. You open his diaper and it looks like he has a little red Speedo on. He's weak and underweight. He's just uncomfortable and tired. Every once and a while he will do a little laugh. I was so looking forward to getting him home so he could be comfortable. That day will come. Probably soon, but I just don't know when. I'm just glad that he stayed in the hospital and got the fever there rather than coming home and having to go back. We've been down that road many times.

Keep our little guy in your prayers. Thanks so much!

Monday, January 30, 2006 10:15 AM CST

Hi everyone! It's 11:19 on Monday. Karen and Chris are both at the hospital today. They were hoping to be bringing Kevin home today. HOWEVER, Kevin spiked a fever last night. They took him off of his antibiotics too early. So.....he is back on his IV antibiotics. Karen and Chris are waiting to talk to the doctor. They are not sure what the plan is but he will not be coming home today. :(

Karen will update the website probably later today or this evening.

Take care everyone and as always, thanks for your continued support and prayers!

Aunt Theresa

Sunday, January 29, 2006 11:21 AM

Kevin is coming home tomorrow!! They decided to stop his antibiotics on this 10th day. They will take a blood culture tomorrow before we bring him home. I guess if anything grows on it then we will have to go back and finish the antibiotics course. He's been doing well so hopefully the bug has been killed. He is off of all IV fluids and is doing fine. No more Fentanyl too. He has been getting oxycodone a couple of times a day for pain instead. But they kept the IV in his foot just in case something comes up.

I have also made a new appointment for his heart surgery. His cath is March 27th and his surgery is March 31st. One reason why I wasn't too heartbroken about not going in January was because there hadn't been communication between the doctors at JHH and LPCH (Dr. Hanley). Kevin is so enormously complex and we couldn't just walk in to LPCH and say, "Here you go. He's got quite a few quirks so be careful!" A letter was sent alone with his package back in September and that was the only communication besides Dr. Ringel calling him to make sure he understood Kevin's last cath pictures. I spoke to Dr. Hanley's secretary and she understood my concern - but she said that Dr. Hanley is very busy. I get that...but if my child dies because of some stupid mistake that could have been prevented with a little communication - I will be livid (to put it mildly). She said that he couldn't speak with every one of his doctors and we agreed on having JHH staff have a meeting and one person be the contact for LPCH. I chose Dr. Ringel since he is Kevin's cardiologist. (He doesn't know it yet.) I asked Barb Hall (patient advocate) to pull it together for me. She will be able to help, but she needs to figure out the best way to get it done. I even want anesthesia involved. We've got 2 months. Two months to get the communication corrected. Two months to get Kevin back on his feet and feeling well. Two months to keep him as healthy as possible. Two months to have the rest of my hair turn gray and fall out. Two months to put on another 10 pounds. He better stay well. The last 2 months haven't gone too well for him or us. Gracie woke up with a cold this morning. I need to keep her hands clean and keep her out of Kevin's face. She misses him.

I miss him too. We aren't going to the hospital today. We are staying home and getting things back in order for tomorrow. Plus Gracie is sick and wants her Mommy. And I feel like absolute crap for not going to the hospital. Chris and I made a joint decision that we should stay home. I called the hospital to tell the nurse and she said that Kevin was doing just fine. She had just given him a bath and he was ready for a nap. I told her that we don't miss any days with him and she said, "I know you are always here. He'll be fine. There are plenty of people that peek in on him and play with him." I told her I would call later and hung up. Then I went to Chris and got a hug and cried. I felt SO bad for not being there with Kevin today. Gracie gave me a hug too. Then she asked why I was crying. I told her because I wasn't going to see Kevin today. She said, "It's OK Mom. He'll be home tomorrow." I guess she's right. Why do I feel so guilty? There are other kids in that hospital whose parents never show up. I'll get over it. I hope I don't stay depressed the whole day.

I've got to go. Gracie wants to play a game and I've got laundry to finish. I'll write on Tuesday to tell you how he's doing.

Thursday, January 26, 2006 6:24 AM

Tuesday the doctors wanted to get Kevin off of the IV fluid he was needing to keep him from getting dehydrated. The way to do that was to increase his feeds the same amount the IV fluids were running. 22 more cc's an hour! Not happening. We knew that and Kevin's nurse knew that but the doctors didn't understand. We told them that Kevin would throw up and poop more. So what was the point of more fluids if they weren't going to stay in his belly? I was at work and I spoke to the doctor. I said, "What if he starts throwing up?" He said they will stop and go back to his normal rate. "What if he poops a lot more?" They would stop. What if he tolerates it, but his belly being that much fuller presses on his lungs and he has breathing issues? (Kevin doesn't have much room inside of him because of his enlarged liver.) He said they would stop. I didn't really see the point because I knew it wouldn't work - but it can't hurt to try. So they started slowly. By the time I called to check on him about 5 hours later - he was already back to his normal feeds. He had thrown up too much. Surprise!

Kevin's IV in his arm also stopped working yesterday morning at 3am. Actually, it infiltrated which puffed up his entire arm and the excessive fluid killed the skin in most of his hand. It looks like he was burned and the skin is falling off and very red and swollen. It doesn't seem to bother him too much. I think he is happy that he finally had a free hand. His left arm is still kept wrapped in the ace bandage and he is comfortable. He has a pain pump that we can activate before he re-wrap his arm or have to move him. I think they will be taking that away soon. It was Fentanyl so I'm not sure if we have to wean him off since it is so powerful.

Kevin has 6 more days on his antibiotics. ID spoke to me yesterday about the central line. They don't feel he will need one just for the antibiotics. They are willing to stop his antibiotics 6 days early and see what happens. They didn't understand that there are other reasons why Kevin needs the line. But the line is actually more for Kevin's overall comfort because it is used for blood draws, his IV vitamin K every couple of weeks (rather than shots) and IV fluids that he seems to have needed in the past couple of months. I told them that if his IV stopped working, then they could try for another IV and they have 3 chances. I don't want his antibiotics stopped early. We've tried that in the past and it's never a good outcome. They agreed. So it looks like he will be going home without a central line which means more big boy tubbies! He'll like that. Except for the broken arm hindering us. We'll figure something out.

I spoke to his nurse this morning and she said he is really enjoying having a free hand to play with. The IV in his foot seems to be holding up pretty nicely too. I think I need to have a priest come and bless it so it will stay for the next 6 days! It wouldn't hurt to have him bless the rest of Kevin also. I'm not sure they even have a priest there anymore. Fr. Sal retired in December and we've had Pastors coming by to visit and pray with us since then.

I'm really looking forward to having Kevin back home. We will all be a lot happier. Kevin will be so much more comfortable. Last time we brought him home you could see an instant difference in him. He was so happy. Soon...

Well, that's about all I have to report for today. Chris is going to the hospital today and I get to work. We have been sharing hospital duty and it seems to work out for us and our jobs.

Take care!

Tuesday, January 24, 2006 7:01 AM

Kevin had an OK weekend. I walked in yesterday to hear him screaming down the hall. I went up to his door and saw 2 nurses standing over him. I said, "What are you doing to my baby?" They were putting a urine catheter in him (or trying to) so they could get urine. I asked why. They didn't know the purpose for the urine. I told them to stop and get me someone to talk to about the test. The intern came to speak to me and explained what the urine was for. I asked why he didn't get a urine bag placed rather than get a catheter. She said they were going to bag him now. That wasn't my question - why wasn't he bagged in the first place? She said she didn't know. Then she told me that Kevin was showing signs of dehydration and needed some more blood work at 3pm that day. She said they had pushed his IV fluids up to 22 an hour and wanted to check his blood to see if that was helping. It doesn't help when his IV fluids are running at 5 an hour. She said she would get that increased. I waited and waited and they sat at 5 an hour. Then the fellow came in. I unloaded, I guess you could say. I asked her what the point was to check his blood at 3pm when he was still running at 5 an hour. You should have seen her face. So, the blood draw was postponed. He is getting stuck way too many times. If they keep having to stick him for blood, there won't be anywhere to put in another IV when this one goes. Plus they will run out of places to draw blood! I asked the intern if she had seen his arms, legs and feet. She said she had. I don't think so. They also told me that they wanted to x-ray his arm again and he would have to go to radiology for that. I said 'no'. It's just too much pain for him. So, they brought the x-ray machine to him. They took 9 x-rays (Kevin glows in the dark now.) Guess what? His arm is broken! Orthopaedics came up eventually and I mentioned that they said it wasn't broken last week when he had the skeletal survey. He said that it was and the radiologist had that in his notes. OK, now I was getting even more pissed. His arm was broken for a week and nobody knew it except for the radiologist. The doctor said that they aren't going to do anything to the arm and it was already starting to heal. I asked to have it wrapped to his body with an ace bandage and he did. Kevin seemed to be in less pain when he was moved. It should be another 5-6 weeks before he is healed.

Dr. Schwarz spoke to Dr. Lau this weekend and she explained to us that he will put in a central line - but only if he is really forced to because of no other alternatives. That means that if his IV's keep failing during his antibiotics, then they will need to keep getting replaced which will be very painful for our son. She also explained that every time Kevin goes under anesthesia, it is a huge risk for him. She also told us that there was a child who died with Alagilles when he was getting a line put in because of a vessel rupturing. These kids are very fragile and Kevin seems to have the worst of it. So, we aren't pursuing the central line at this time. We'll just hope that his IV's get him through the next 10 days.

Kevin has giggled just a few times recently. He likes watching the Wiggles and giggles at them. And even with his little broken wing, he likes to be held over your shoulder. It's not too bad for about 15 minutes - but then your back really starts to hurt. He is gaining weight, but still a couple pounds shy of where he was. He doesn't look good in the face. It's skinny and he has circles under his eyes. It doesn't help that he has a pouty little look to go along with it. But he is SO much better than where he was just a week ago. He'll get over this - just like he always does. And then we will be back on track for CA. Maybe early Spring.

Thanks for your prayers. He's getting better! Take care!

Friday, January 20, 2006 8:31 PM

I just got home a few minutes ago. Late night at the hospital. Kevin is out of PICU as of Wednesday evening. Unfortunately, that meant that his arterial line had to come out. That meant that there was no longer easy access to draw blood for testing. Now he will have to get stuck for each blood draw, which is limited to once every 24 hours.

We have spoken to GI and Infectious Diseases (ID). ID is now involved because of the high fever he had that Friday night and freaked us all out. We found out that he has VRE again, but this time it's worse since it's in his blood, not just his poo. So he got sick from it this time rather than being a carrier. We have to gown up each time we go into his room and he can't be around other kids so he is in a room by himself. ID wasn't sure if the bacteria Kevin has in his blood and urine has also grown in his heart. They don't think it has, but they can't tell for sure. He had an ECHO while still in the PICU to check and they couldn't tell either way. So, they needed to get with GI to see how long he needed to be on antibiotics. They have agreed on 14 days starting from Tuesday/Wednesday. So, 11 or 12 more days. Not a problem - but he can't come home. He has no access. He has one peripheral IV in his arm which isn't going to last much longer. Still nobody from surgery has spoken to us about the central line situation. That's starting to really irritate me. I've requested to speak to someone a few times and I've gotten no response.

Kevin still hasn't had his MRI. They still don't think he's well enough but it's tentative for early next week. He did have a sonogram of his arm today. It went better than I thought it would. He tolerated it until she had to put his arm up and go underneath his armpit. His pain medication was increased yesterday, but I don't think it's doing the trick. So he screamed for a couple of minutes while I tried my best to comfort him. Then he threw up. I guess we will get those results tomorrow. Weekends there stink because nobody really knows anything because everyone isn't there.

Kevin is moving his left hand and fingers. But not his arm. It's still limp and very painful for him to the touch. He's losing so much weight too. He's down to about 21 pounds. His face is getting skinny and his eyes are sunken. He is still having those staring fits, but they aren't as often or as long. He has giggled a couple of times, but no smiles. He's also still sleeping a lot. He is still on oxygen with the nasal canula, but it's not much. He is up to full feeds and tolerating them pretty well so far. His butt was doing well, but is starting to get raw again. He still has diarrhea which isn't helping. He had his EEG on Tuesday evening and did well. He was a mess afterwards with all that gunk in his hair. They said that the results were OK and didn't show any abnormalities. While in the PICU I notices some gunk on his neck around the nasal canula. I thought it was throw up that hadn't been cleaned up. I was wrong. It was a yeast infection around the side of his neck all the way to the back. It was a raw, nasty mess. Then I checked under his arms - that was bad too. He's been getting powder for it and it's doing better. But his skin is so chafed and raw. He also has some large wounds on his chest from the monitoring leads and the bandage from the central line. It's bruised and scabby. A&D is working to heal them both up. I put that stuff on everything for the entire family.

I think that's everything. I'm sorry I haven't written and worried everyone. It's so hard to do it when I get home because Gracie hovers over me crying that she wants to play a game on the computer. I can't concentrate. And I'm pretty tired. I tried to use the computer at the hospital library but it is closed due to RSV.

I will update on Monday about how his weekend went and what the plan is. We are still without answers when it comes to his arm and neuro issues. But he is bouncing back slowly.

Take care.

Monday, January 16, 2006 4:52 PM

Kevin is doing a bit better. When we got in on Saturday morning they said that he had turned the corner, but was still very ill. They put an arterial line in and had him on the bipap machine. He came off of the bipap machine Saturday late afternoon. He needs the nasal canula for oxygen but he's on a small amount. He started to bleed in his belly again and they don't really know why. His liver isn't working the way it should and isn't making what it needs to clot his blood. So they keep giving him plasma, platelets and red blood cells. It's daily now. I asked the doctor today if his liver not making the clotting factors is a permanent thing or if there is a chance that it can be turned around. If it's permanent, then I don't know what we do. I honestly don't know where he goes from there. It would be a bad thing for Kevin. The doctor said that there was no way to tell yet because he is still bleeding and they are trying to keep up with that. He said that maybe once it gets under control, that his liver could bounce back. But we won't know that for a little while.

The neurologists didn't come by this weekend. But I saw them today. Kevin's left arm still isn't working, but he is wiggling his fingers. His face is still droopy on the left also. He is in so much pain and they don't know why. He had a CT scan last night but they can't verify whether or not he has had a stroke. But they think he has from his symptoms. They want him to have another brain MRI, but he isn't stable enough to have that done yet. It may take a few more days. I asked that they also scan his arm to see what is going on in there and they said they planned to scan his shoulder where the infiltration was. Then I asked if the infiltration could have caused the stroke. They said it very well could have. That's when I felt like throwing up. I knew the line stopped drawing a couple of days before, but the nurse told me that they always use the line until it stops working totally. I accepted that. Especially since he had no other access. And this is what happened. If that is policy - it needs to be changed before this happens to another child.

We had him put on a pain pump yesterday morning. He is on fentanyl, which is stronger than morphine. He can have the pain pump button pushed every 15 minutes if he needs it. He still has the staring issues and they don't know why. The neuro team said that they are going to do the EEG for him tomorrow or the next day. That will be at his bedside and shouldn't bother him too much.

I put in a Baby Einstein movie for him today and it got his attention - but didn't keep it. He has to lay a certain way because of his discomfort so the child life lady got him a TV on a stand with a VCR and wheeled it up next to his bed so he could see. He stayed awake longer than he has been lately and not screaming as much. But a majority of the time is him staring at nothing. I pray that our little guy gets back to himself. I want to hear his little giggle and watch him play ball with his sister.

She's taking it a little rougher this time. She talks about him often. One day when I got home late, she ran out to the car and after I got out asked me where her brother was. I told her that he was still at the hospital and she was disappointed. Last night the power went off for a few minutes. When it came back on, it turned on his feeding pump and it alarmed. She ran into the den following her dad asking, "Is my brother in here??". This morning she told me that he has a line in his chest and he was sick. I told her that the line didn't work anymore and it was taken out. She said that he needed a new liver. She also said that after he gets a new liver "he will grow and grow and get as big as me!" I told her I sure hoped so. The teachers had told me that she was a different kid after Kevin had come home late December. She talked about him and drew pictures of him and her together. It's tougher on her that I thought it would be.

So, that's it. That's where we stand right now. Not much news. (I sure wrote a lot for not much news didn't I?)

I want to thank everyone who attended the events for Kevin's fundraiser last week. Chris was able to go to the social dance on Saturday night and he had a wonderful time. Everyone I've spoken to that went said that they had a blast. Thanks to everyone who put that together for us.

I'll be off work for the rest of the week and probably getting home later in the evenings. I may not be able to update daily - but I'll try. I'll give him lots of kisses from everyone.

Take care and God bless.

Saturday, January 14, 2006 9:12 AM

Kevin did not have a good day yesterday. Actually, it was awful. I got to his room and he had just received platelets and was now getting IV fluids through his (non) central line. It had stopped drawing a day before, but they kept putting fluid through the line. I was told with that other line that if I couldn't draw from it then it had to be pulled. I don't understand why they don't have the same practice there. Because of that, the platelets and IV fluid had infiltrated into his chest, neck, shoulder and face. They weren't aware of it. I walked in the roomk, saw him and went immediately to the nurses station. They stopped his IV and called the doctors. That poor boy was in so much pain. It was heartbreaking for me. I cried a few times. It's so hard to see your child in pain. And he seems to be in pain so often because of complications with his disease.

They moved him to the IMC where he could be watched closer. That's when I noticed that he wasn't moving his left arm. We went down to radiology for a complete bone scan (19 x-rays) to check to see if his arm was broken and if any others were broken. Surprisingly, his arm is not broken. So why isn't he moving it? They said that maybe the infiltration is pinching a nerve and it hurts him to move it or he can't. I had his nurse call Chris to let him know what was going on.

He also needed IV access. It took 4 tries to get an IV in him and it's in the bend of his right foot. He is very uncomfortable with it and kept grabbing at it. They drew labs when they put the IV in. They needed to check to see if he was clotting OK so they could take the line out of his chest later that day. The labs clotted and were pretty much wasted. They set him up to get more plasma and platelets so he could get the line pulled. Then he spiked a fever. It just got higher and higher and then Kevin was pretty much out of it. I requested morphine for him 3 times. Then he didn't need it anymore because the fever had knocked him out. So, they had to stick him again so they could get cultures and get antibiotics running. In the meantime, his glucose was low so he had to get stuck two other times to check that. He has bandaids all over him.

Kevin needs access that is going to last and this IV won't do it. If he needs to be on antibiotics for a long period of time - this won't work. The doctors seemed very concerned for Kevin. He was getting worse. Neurology came by twice. If there isn't anything on his nerves in his arm - he may have had a stroke. I'm just not going there right now. I'm praying for that infiltration to be the culprit so it will absorb into his body and his arm will get better. He had his head CT when I was leaving last night after 9pm. He was going to the PICU afterwards. They said that he might need a femeral line which is a line in a large vein in his groin. It would be put in at the bedside by the surgery team and as long as he had it in, he would need to stay in the PICU.

The PICU doctor called at 2am. She said that Kevin had gotten much worse since they got him. His blood pressure had dropped and they were giving him medication for that. His WBC was over 50K - dangerously high. And she wanted to review his resuscitation status. I told her that he was NOT on DNR orders and we aren't going to change that. They were to make efforts to keep him alive. She said that he needed the femeral line and an arterial line and would probably need to be intibated (put on a respirator). I agreed. Then she asked if the surgery for CA was postponed or canceled. I said it was postponed. She asked if I had any questions. I did. I wanted to know what difference it made whether his surgery was postponed or canceled. She said she just wanted to know. She said they would call back to let us know his status. I was up until after 4am. They never called. I figured that was probably a good thing. I didn't call them. I don't know why. I just stayed awake praying and worrying. You can't imagine what things go through your head when you are put in these positions. Mostly, it was "what if he dies?"

I called this morning to check on him and his blood pressure has improved and he is off that medication. He did get his arterial line but not the femeral line. They don't think he needs that just yet. He is not intibated, but he is on bipap which is a mask that forces oxygen into your lungs. He has another IV in his right hand and still the one in his foot. He is on 3 antibiotics for the infection. They pulled the line out of his chest and sent it for culture. He's very unhappy and very uncomfortable.

We are leaving now for the hospital. He'll pull through - he always does. Pray for our little guy.

Thursday, January 12, 2006 8:53 PM

Sorry I haven't been able to write. I'm at the hospital with Kevin all day and then I spend the evenings with Gracie and I'm so tired by bedtime.

Kevin's liver labs look pretty good. But, he still isn't himself. He's very far from even being close. No peek-a-boo, no giggles or smiles. They finally listened to me and saw that Kevin wasn't acting normal. They called for a Neurology consult and they came today. I explained that Kevin acted as though he was in pain when he was lifted up or sat up straight. It's like he has a bad headache. He calms down when you lay him down and he falls asleep. He sleeps 90 percent of the time. He also just cries for the short periods of time that he is awake. He still needs oxygen but he is at his full feeds now. He keeps throwing up. He threw up his feeding tube today. That was a huge mess.

So, the Neurologist did some tests and Kevin did a little trance while he was observing him. He doesn't think he is having a seizure - but he definitely thinks there is something wrong with him. He said that maybe it is Kevin's high ammonia levels (I know that's not it because they have been higher in the past and he didn't have any problems. Plus his ammonia levels were fine 3 days ago and he still had these symptoms.) Then he said that he could have menengitis. I'm not so sure about that one either. He hasn't had any fevers. They said they will do an EEG (the test where they put probes all over your head and take readings of the brain activity), and possibly a spinal tap to check for an infection. The GI doctors don't think he has menengitis and they feel it would be dangerous for Kevin to have a spinal tap at this point because of his bleeding issues. So I don't think he'll get that.

I spoke to Dr. Schwarz today and she said that she thinks CA should be put on hold....she said, "But you probably already knew that right?" I said I did. I just wanted to hear it from the docs. I have, so I called CA this afternoon to tell them what was going on. It's postponed - not canceled. Kevin needs to be well for a few weeks before we are comfortable with him undergoing a cath and surgery. It will give him a better chance of getting through all this.

I wish we knew what was bothering him. I pray that this EEG test tomorrow will find out. I want him to be comfortable. I want him to be back to being Kevin. I see him each day, but I miss him. I miss all of his little tricks and how he always closes his eyes when he laughs. I can't remember if I told you all that he said "touch down" a week ago. He even put his arms up in the air. Of course he wouldn't do it again.

I'm tired and Gracie is needing some love right now. Take care everyone. Pray for our little guy. (But I know you already do.)

Tuesday, January 10, 2006 8:57 AM

Kevin's lab results from his blood tests are getting better each day - but he's still not himself. I don't think I've ever seen him like he is now. He won't stay awake any longer than 2 minutes at a time and he goes into little trances and will just stare at nothing. If you take your finger and act like you are going to poke him in the eye he won't even blink. It's like he doesn't see you. I've expressed my concern about that to the doctors and they tell me that he's been through a lot. Yes, he has...but he's been through a lot worse than this and hasn't reacted this way. The nurse told me last night that he was awake for 20 minutes. So I thought maybe he was snapping out of it. But the nurse this morning said that he has been sleeping all morning and he didn't even wake up when she put his feeding tube down his throat. That's just not normal.

He slept pretty much all day yesterday while I was there. At least he saw me when he would open his eyes. I held him a few times, but he was requiring oxygen and I couldn't hold him and hold the oxygen up to his face at the same time. The hose is too short. Now he is on a nasal canula (you all haven't heard that word in a while have you?) He's not requiring too much oxygen, but he can't seem to go without it. His sats drop into the 60's. He has fluid in his chest and they think that could be the reason why he requires it right now. He'll get better - it's just taking some time.

I have to run. I need to send an e-mail to Dr. Hanley to let him know what's going on with Kevin. He needs to speak to Dr. Schwarz. I'm not so sure about CA at this point. I hope it's still on, but Kevin needs to be stable and he's just not there yet. We only have 2 weeks left...


Don't forget....
I would like to change the subject a little and let everyone know that Chris' company has put together two fundraising functions that are coming up. One is a Buttermaker Social with fundraising activities. It is on January 14th from 7pm-1am. You must be 18 to enter and 21 to drink. There will be a DJ, dancing, door prizes, raffle and more. It is at the Branchville Fire Hall, 4905 Branchville Rd, College Park, MD. Admission fee is a dessert to share. If you would like to attend, please e-mail Bill Chroniger at bchroniger@ctsservices.net or call 301-575-1650.

The other is on Tuesday, January 10th at the Green Turtle in Laurel. 14150 Baltimore Avenue. 10 percent of all receipts that day go to Kevin's fund. Kevin will probably still be in the hospital that day, so I will be with him. But Chris will be there that evening and he hopes to see you.

Saturday, January 7, 2006 8:35 PM

My sister went with me and Kevin yesterday. For a kid who hadn't had any formula in his belly since 7:30am Thursday to 4:40pm Friday (they were supposed to take him back at 2pm), he had the best attitude in the whole world. I couldn't believe how well behaved he was. I went with him back to the OR and stayed until he was asleep. He had to be put to sleep by gas because he had no IV line. Thankfully they put his IV in after he was asleep. They had to try 4 times before they finally got a line into his ankle (ouch!). They did the endoscopy and colonoscopy first. They said that he had irritation and inflammation of the stomach and upper bowel and they took samples for biopsy. Then Dr. Lau did the central line. Kevin was back in the OR for about 2 hours, maybe a little less. He came out of the OR in a cranky mood like he normally does but settled down when I got there. We were planning on going home - but then the blood started to come out of his hiney. Lots of it. Deep, red blood. They freaked a little - but then said it was normal. (Then why did they look like deer caught in the headlights?) Finally, after 4 bloody diapers, they said he should stay to be monitored and have blood work done in the morning. Good thing...it slowed down, but then started again this morning. They called us at 6:30am to let us know that he needed some plasma and they had cut off all Pedialyte and water through his tube. Now he's not even getting his medications. They don't want anything going through his tummy to his intestines so they will heal and the bleeding will stop. The bleeding is obviously from the places they took the tissue samples. I'm sure they certainly didn't think this would happen. Neither did I. I thought it would be quick and simple. But it gets even more complicated...the line that was put into his chest isn't a "central" line. It's in a vein, but not a large enough vein to make it a central line. He cannot get TPN through this line. That was the whole point of getting the line. He will need TPN after his heart surgery. They told me in the recovery room that Dr. Lau said as long as it worked then we could go home. Uh, I don't think so! I explained what the reason for the central line was and the doctor told me that it was up to Dr. Lau. Uh, again...I don't think so. Boy, Mommy was getting pissed at this point. I told the guy that if I needed to speak to Dr. Lau about it then I would. Of course, he hasn't been seen since he put in the line. It's not up to him whether or not Kevin has a central line. That's what was needed and that's what was ordered - but it wasn't done properly and it needs to be fixed. But...the line isn't our immediate problem. Kevin was transferred to the PICU this afternoon. Don't worry, he shouldn't be there too long. He needs to be closely monitored because of the issues with his blood right now. He'll heal inside and his body will catch up. He's EXTREMELY sleepy because of the loss of blood. Midway through his transfusion he started to stay awake longer than 5 minutes at a time and was showing attitude. So he's getting better. We don't think he'll be in PICU for very long. His white blood cell count is also very high. High for Kevin in the past has been around 25 or 27K, today he was 35K. So he is also on IV antibiotics now. They said for maybe 4 days and he might have to stay that entire time. I don't know. The doctors aren't saying much at all to us. Speaking of doctors not saying much at all...that PICU doctor that told us Kevin would be dead in 1 week came to his bedside. He didn't say a word. He just stood there for a few seconds and stared at me. I said, "Hi." He said it back and then said, "Man, he is one of the toughest kids I have ever seen." I guess that was his way of saying he misjudged Kevin. I don't know. He didn't say anything else, he just walked away. I don't really care. I let it go.

So, things didn't go the way they were supposed to - but do they ever for Kevin? He's come through MUCH worse than this so I'm not worried.

I would like to change the subject a little and let everyone know that Chris' company has put together two fundraising functions that are coming up. One is a Buttermaker Social with fundraising activities. It is on January 14th from 7pm-1am. You must be 18 to enter and 21 to drink. There will be a DJ, dancing, door prizes, raffle and more. It is at the Branchville Fire Hall, 4905 Branchville Rd, College Park, MD. Admission fee is a dessert to share. If you would like to attend, please e-mail Bill Chroniger at bchroniger@ctsservices.net or call 301-575-1650.

The other is on Tuesday, January 10th at the Green Turtle in Laurel. 14150 Baltimore Avenue. 10 percent of all receipts that day go to Kevin's fund. Kevin will probably still be in the hospital that day, so I will be with him. But Chris will be there that evening and he hopes to see you.

We are very grateful for everyone's prayers, good thoughts and time and effort they are giving to help us out. Kevin is loved by so many.

Our love to you all...

Thursday, January 5, 2006 9:52 AM

We have received a date for Kevin's colonoscopy, endoscopy and central line placement...tomorrow! We have to "clean" him out for the colonoscopy so I had to give him a major laxative this morning and put him on a clear liquids diet. He gets another laxative dose this evening and will stay on clear liquids until tomorrow morning at 9am. Then he's cut off of all liquids. We have to be there at noon and he goes to the OR at 2pm. He's going to be very unhappy today and tomorrow. But I'm glad we are getting all of this taken care of.

It's been nice not having that line in - but he needs it. He have taken advantage of it not being in and getting in the regular tub more often. He and I got in the other night. I waited until he pooped and then I took him out of his diaper and clothes and layed him on the bed while I ran to check the water temp in the tub. Gracie was watching him...then I heard "MOOOOOOOMMMMM! He's POOOOPPPPPPIIIINNNNGGGGG!!!! EEEEEWWWWWW!!!! GROOOOOOSSSSSSSS!!!" I ran into the room and he had pooped on my new blanket. (I'm still using bed linens and blankets from when I was in high school so a nice new blanket is a major thing for me.) It wiped off pretty easily. I always laugh at these types of things. I think it's pretty funny. At least he didn't poop or pee in the tubby that time.

He's doing well overall. His attitude is wonderful and the new idiot nurse we have will be gone after today. She's pretty bad. She had a problem yesterday with the feeding pump because it was beeping and she couldn't get the new bag on. I asked if it gave an error message and what it said. She said, "It keeps saying e-l-l-l-f." I didn't know what she was talking about. I tried to talk her through the problem and I just couldn't. She wasn't getting it. So I called Nina to go help her. I did figure out what the e-l-l-l-f was and I told the nurse...it is the battery life of the pump. E is empty, F is full and the dashes in between was the battery life. We prefer not to have this one back again. There have been other issues too. She lays Kevin down and lets him stare at the ceiling while she watches Judge Judy, his diaper rash is getting worse again since she's had him and she keeps messing up the medications. She means well I guess - but sometimes that just isn't good enough ya know?

I told the nursing company that the person who has Kevin tomorow would be released at 10:30am and they left me a message telling me that they aren't sending anyone until Monday per my request. I didn't say that! I called them and told them that Chris and I will be at work tomorrow morning. (Actually Chris will be staying at work and my sister is going with me to the hospital.) They said they won't be able to get someone to work 1/2 day and I should take her to the hospital with me. I told them in my message that I won't be home until after 7pm so I can't take them with me. They don't listen and it's very frustrating!

(Deep breath!!)

We'll get something worked out...I don't have to come in to work at all and can relieve the nurse at 6am tomorrow and take care of Kevin. He and I could use a little quiet, quality time together. Anyways, you all have a great weekend and I know things will go just fine for Kevin. He's a tough little guy. He'll be just fine.

Tuesday, January 3, 2006 9:29 AM

Kevin is holding his own. He's not nearly as thirsty these last 2 days so I think we are getting a handle on his dehydration. He still has the diarrhea though. I haven't heard about a date for his tests and to get a new line put in. That poor baby. After he gets that done his chest will hurt, his throat will hurt and his hiney will hurt. And I can't give him anything to help with the discomfort (Mortin) because of the renal issues.

But since his line is out, we took advantage and got him into the real bathtub last night (rather than the kitchen sink). Of course Gracie had to get in too. So all 3 of us were packed in the tub and enjoying ourselves. Kevin was having fun splashing around and playing with toys. Then he layed back onto me and relaxed. Then he peed. I saw a big orange cloud start to appear and I said, "Oh Gracie - look out." And he was still peeing when he looked up at me and smiled and giggled. It was funny. I picked him up and that's when the poo got dispersed through the tubby water...it was gross - but still funny. We drained the tub and cleaned it out and washed off. Then we started a fresh tubby for the 3 of us. We eventually ran out of hot water. Kevin got into his PJ's and fell asleep - HARD. I kept checking his breathing because he wasn't moving at all. He will normally wiggle around and roll - but he wasn't. He was so tired from his tubby experience.

I'm tired this morning. I dreamt a lot last night so I don't feel like I got any rest. The worst one was when I dreamt that I got to the airport and the plane was leaving in 15 minutes - and I had forgotten Kevin! He was at Nina's house. Chris wasn't there either - I don't know why. I've got too much to still get into place before we leave and I'm running out of time. I think that's what my problem is. It'll get done...

Sunday, January 1, 2006 5:06 PM

Happy New Year everyone...we slept right through it!

I had to talk to the doctor on call at JHH because there was a mix up with one of his medications (they said not to fill one and they were mistaken.) So, while I was on the phone getting that straightened out I talked to her about his diarrhea and him being thirsty. I told her I was worried about dehydration. She didn't blow me off like the ER docs the night before. She called Dr. Schwarz and they told us to take Kevin to the local hospital for some blood work. We did. We waited until 8pm because we had plans for family to come over for Gracie's birthday. (Last year we celebrated Gracie's birthday on Jan 1st and everyone had to leave because we had to take Kevin to the hospital that day too.) Anyways, while we were in triage, a guy was carried in with a gunshot to the neck. It was gross. It freaked them out because they aren't a trauma hospital. He was OK though.

Kevin was still thirsty while we were there, but it wasn't as bad as earlier that day because we had been giving him all the water he wanted. The results came back and he was OK - but he was dehydrated. Not to the point that he needed to go to JHH (THANK GOD). We got to go home at 11pm. Not too bad. The doctor from JHH called me the next morning to check on Kevin. She had spoken to Dr. Schwarz and she was OK with his blood results. They gave me a new recipe for his formula and had me increase his feeds to 70 cc's per hour. We are giving him Pedialyte instead of water. His thirst has slowed down today.

He will be going to the hospital hopefully this week to get his line replaced and get his colonoscopy and endoscopy done. If it can't be arranged for this week, we will need to get more blood work done anyways.

I've got to go - I'm getting a headache from sitting down here in the basement. Why you ask? Because on Christmas night a HUGE, and very full bottle of Downey shimmied off if the dryer and exploded all over the floor. Chris and I took 20 minutes to clean up what we could. A bunch is still stuck under the washer and dryer. I am so sick of April Fresh! It's been a week and it still smells like flowers. Ick.

Friday, December 30, 2005 12:11 PM

Well, he just couldn't stay away from the hospital! Don't worry - he's home now. Last night when I was trying to draw blood from his central line - it wouldn't work. I layed him down and tried, I sat him up and tried, I layed him on his side and tried - nothing. So, we called Ryan on GI. He said that Kevin needed to go in because he needed an x-ray. Why not locally? He said that more than likely Kevin would need a pediatric surgeon to remove the line. I didn't see why since it was already loose and could just get pulled. So, I waited for the night nurse to show up and I took her with me and Chris and Gracie stayed home and went on to bed. I shut off Kevin's food at 9pm in case he would need to be sedated. He has to be off food for 4 hours prior. Just in case.
We got to the hospital after 10:30pm and went to the ER. We waited for the x-ray and then had to wait for them to tell us that it looked the same as the day we were discharged. Then they decided to try to draw from the line themselves. They tried with him sitting up, laying down and laying on his side. And guess what? It didn't work. Surprise! Then they said that they had to wait for a surgeon to come look at it and remove it. They said he would probably not sedate him and would try to pull it out. The reason it needed to come out was because it could cause a blood clot inside of Kevin and that was very dangerous. I started his food back up and started to give him water by mouth. He was VERY thirsty. I told the ER docs that Kevin was having diarrhea and him being this thirsty was a sign of dehydration. They didn't seem to care. They said to try to keep as much going in him that is coming out. Whatever.
So, we waited even longer and the surgeon finally showed up at 1:50am. I was seriously thinking about pulling the line out and taking it to the doctors desk saying, "Can we go now?" But I waited. And the surgeon pulled it out and stuck a piece of gauze over it. That was it. We got out of there at 2:30am and got home at 3:30am and I didn't get to sleep until 4.
Kevin is still excessively thirsty and we are giving him as much water as he wants. We will try our best to keep him hydrated but I just don't know how that will pan our for us because of his recent kidney failure. I will keep a close eye on him. He doesn't have any way to get IV fluids anyways - there's no line. He would need a regular peripheral IV and that is so painful for him and they don't work for long.
We'll just keep asking God to help our little guy out here.

Also, today is our little Gracie's 4th birthday! We will have family over for pizza and a Barbie cake that she picked out herself. Happy Birthday baby girl!

Thursday, December 29, 2005 12:06 PM

He's home and very comfortable! We arrived at the hospital yesterday afternoon about 1pm. Kevin was awake and crying. We needed to get a lot of things in place before we could leave the hospital (nursing, new medications filled, etc.) We left there around 4pm. While we were there, Chris and I noticed that his central line was out even more than it was the last time it had been pulled out. So, the doctors got another x-ray. Boy were we glad we mentioned something! His central line is not in the place it needs to be inside of him. It is supposed to be down close to his heart...it is up in his neck! So, we have to be VERY careful with it and make sure it doesn't come out any further. If it does, I need to check to see if it is still working and if it stops working, we were told to go to the ER to have it removed. It needs to be replaced and they said they should have an opening in the OR for him in a week or less. He doesn't have to stay overnight. They will also try to get his colonoscopy and endoscopy done at the same time so he is only knocked out once and everything can be over with.

Kevin needs some blood work done on Monday and that is normally done at home. But the nurse for the company that does it will be out that day. We can't take him out anyplace to get it done. It is too risky and he could get sick. The doctors at JHH asked us not to take him out anywhere before his surgery at Stanford. So, I asked the company to try to find another nurse from another one of their offices. I volunteered to do it because I know I can do it - but they won't let me.

I stayed home this morning to give orientation for a new nurse. She was only coming for today. Chris has stayed home with her because you can't leave them alone when they aren't familiar with Kevin. Then another nurse came for orientation that is supposed to work tomorrow and next week. The nursing company had originally told me that the nurse today could train the nurse for tomorrow. Huh? How can a new nurse who isn't familiar with Kevin train someone else? So I had to come to work later than I had planned. The nurse for tomorrow told me that she was starting on Monday. I told her that it was supposed to be tomorrow. She said she had already taken another case for tomorrow. So did the nurse that was working today. So - I had no coverage for Friday. It was frustrating because the woman at the nursing company talks to me like I'm an idiot and gets frustrated with me when I call her on things. So, I called her and told her that I had no coverage. Then she got on the phone and argued with the nurse for tomorrow. We ended up getting someone to cover. It is such a pain! But we need the help. It's not like we can drop Kevin off at a daycare ya know? One day he will be better and eating on his own and we won't need the nurses. We will be able to drop him off at a daycare - eventually. But I have to say that the nurses we have now that are his "regulars" care for Kevin very much. They are comfortable in our home and comfortable with us. We sure have had some doozies in the past.

We haven't had a chance to let Kevin open his Christmas presents. We were busy last night getting him bathed and settled. That boy stayed awake until 9:30pm! Not even a cat nap since we had left the hospital. He was cranky when he went to bed. I thought he would be comfortable since he was home - but he fought it. I think that maybe he thought we wouldn't be there when he woke up.

Gracie was very excited to see him. She kept kissing him and telling him that she loved him. Then they played catch with a piece of balled up paper. She threw it at him and it hit him right in the forehead. He started to giggle. It was cute.

I've got lots to do so I will sign off. We are so glad to have him home! He is where he needs to be. Let's pray that he stays healthy.

Wednesday, December 28, 2005 7:22 AM

OK, we are gonna try one more time! He should be released today. The doctor called us at home last night to tell us that if Kevin's bicarb was stable and he didn't get a fever that he could be released. I called this morning and the bicarb level wasn't checked yet. I asked the nurse to check with the doctor when they had their rounds. That should be around 10am. So, we'll have to wait and see. But it has been OK the last few times they checked it. Keep your fingers crossed!

Tuesday, December 27, 2005 11:03 AM

Kevin won't be coming home today. Probably tomorrow. I had to wait until GI had their rounds to see if he could come home or not. I spoke to Anna Ruth and she said that Kevin has an elevated CRP. I don't know exactly what that is but she said it is a sign of infection and they don't treat it. She said that we could go home today, it was up to us. But if Kevin got a fever, we would have to go back. So, we are letting him stay one more day to see if his fever comes back. If not, then we will pick him up tomorrow. Better safe than sorry right? He is no longer on antibiotics because his cultures from the other day are negative.

So, Chris is just leaving for the hospital now and will get there around noon to have a visit with Kevin.

Monday, December 26, 2005 4:31 PM

He hasn't come home yet. They said maybe tomorrow, but before we left the hospital he had a temp of 99.9. So they aren't sure yet.

Chris and I opened presents with Gracie on Christmas morning. Of course the items she enjoyed the most were the barbie doll dresses that cost $1 each. I should have known. After presents Chris and I got ready to go to the hospital. We dropped Gracie off at Gan and Pop's house. It was a miserable day with all that rain. We got to the hospital at 2pm and my sister Linda came at 2:30pm. Kevin had gotten a stocking with some toys in it for Christmas morning. The nurse said that there was an orange in it and when she took it out Kevin said, "ball". He was in a good mood that day. We stayed until he fell asleep at 5:30pm. Our Christmas wasn't very exciting. It was kind of like any other day of these past weeks.

Nina went with me to the hospital to see Kevin today. Chris and Gracie went to celebrate Christmas with his family in Bowie. I have a couple of hours alone. But I think I'm going to go shopping with Mom and Dad and have dinner. Maybe I can sneak in a hot bath before Gracie gets home.

I have to go to work tomorrow. It should be quiet. I will call and check on Kevin at 8am. By then they should have a plan for him. If he can't come home, Chris will go to visit him for the day. We can't bear to be away from him all day long. We are comforted by knowing that the ladies at the hospital take very good care of him when we aren't there. But a whole day without Mommy or Daddy is too much.

I'll keep in touch about his discharge plans.....he'll be home soon to open all of his presents!

Saturday, December 24, 2005 8:35 AM

He's not home....Chris and I went to pick him up yesterday afternoon and they said that they were waiting for one part of Kevin's lab work to come back. We got Kevin all ready to go. Dressed. Disconnected from the monitor. Hat in our hands. Then the doctor came in and told us that Kevin could still go home, but it would be later that night. He said that his bicarb was low and he needed some via IV. He had received some earlier that morning and it hadn't worked. That means that his kidneys still aren't up to par. Our thoughts were "so what if we take Kevin home and he gets sick over the weekend? We have no way to check his bicarb to see if it's stable or not." The doctor agreed and said he needed to stay until the next day so they could get him on an oral form of bicarb and he could go home. Fine. We left around 5:30pm when Kevin fell asleep.

The nurse showed up at 6am for her shift. I was bothered that the company hadn't gotten a hold of her. She came in and actually talked for 45 minutes. She was going to work tomorrow also for the day. (Yippe - we have a Muslim nurse!) I asked her if she wouldn't mind working tonight and not tomorrow. I would pay her for 4 extra hours for wasting her time coming out this morning. So we agreed on 8pm to 8am. I don't need help watching him during the day.

I got up and dressed and just called to check on Kevin. The nurse didn't get on the phone...the doctor did. I figured he picked up the wrong line. He didn't. He said he was just getting ready to call us. Kevin has a high fever. Almost 103 degrees. So they have taken cultures and are starting IV antibiotics. I asked about him coming home (normally you have to wait until 24 hours without a fever.) The doctor danced around my question. I told him that we want what is best for Kevin and it's OK. He said, "Then he's not coming home today." We aren't going to freak out about him not coming home. We have to do what is best for Kevin. Kevin won't care if he doesn't open his gifts on Christmas morning. He can open them later. Maybe he can come home tomorrow. I don't know. I hope so. But I don't want to come home with a broken baby just to have to turn around and take him back. I want him to come home when he's fixed! It's just taking him a long time to get fixed this time.

Christmas eve is supposed to be at my parents house this afternoon. Chris and I will arrive later. I was looking forward to Kevin being able to watch the kids play. I'm going to sign off so we can go to the hospital. We'll get that boy home soon. It's still a Merry Christmas whether he's in the house or not. At least he's here on this earth! He's our gift from God. You all have a wonderful Christmas! I'll write soon.

Friday, December 23, 2005 7:43 AM

Kevin is coming home this afternoon! I can't believe it's been almost 3 weeks that he's been in the hospital. Chris and I got there yesterday afternoon around 1:30pm and he was sitting on the nurses lap - behaving. When we took over - he stopped behaving. He was really cranky and I think it was because he hadn't eaten. They stopped his food early that morning and he was hungry. What a crab! At one point I just gave up trying to calm him down and let him sit on my lap and cry. All kinds of people stopped by his room to see what the problem was. I had tried everything and nothing worked. He cried for 20 minutes straight. Then...Chris walked back in the room with the Wiggles tape he had gone to fetch from the car! He stopped crying and watched the whole thing. Stinker.

We went for his MRI about 20 minutes early. We spoke to the radiologist and the anesthesiologist and Chris and I were both comfortable with what was going to happen. I took Kevin into the MRI room and held him until he was knocked out by the medication. It took about 50 minutes and then Kevin went to recovery instead of the PICU. He had the breathing tube out before he left the MRI room so he didn't need PICU. We were in recovery for 1 hour and he slept on my shoulder the entire time. It was nice to snuggle. Chris' brother Tim came by to visit while we were in recovery. We got to take Kevin back to his room and get him situated. He was WIDE awake after that solid nap he took in recovery. He licked some Doritos and had a itty bitty bit of Coke. We stayed with him until he got tired again. He fell asleep and we all left about 8:30pm. The doctor had come in his room and said he was happy that Kevin did so well through the MRI. I asked when we would get the results and he said he would go look at the computer. I followed and looked at the results with him. He said that there are no aneurisms or vessel stenosis which means that Kevin is not as risk for stroke during his surgery or anytime in the future. Well, not until his 50's or 60's. He's at risk as much as the rest of us are at that age. So it was really good news for us.

I work until noon today and then Chris and I will go get him. I'm so excited. I told Gracie this morning that he would be home today and she was excited too. It's tiring to have him home - but it is so worth it!

We go back to clinic on January 13th to get his last check up before we leave for CA. We only have 1 month to go! Alright, I need to sign off. If we don't update before hand, please have a wonderful Christmas. We love you all!

Thursday, December 22, 2005 8:42 AM

Well, Kevin has his 6th urine catheter placed Tuesday morning. Then 1 hour later the doctors said that it could be taken out. That poor kid. But, he is catheter free and IV free right now. He's a lot easier to hold without those extra lines. He still gets tangled up though. I had him yesterday all by myself and we had a good time. He got to try some ranch dressing (he didn't like it so he washed it down with Coke) and he kept licking a sugar cookie.

Santa Claus came to see him and brought him gifts - but Kevin was asleep. After he woke up we opened a couple of his gifts. He got a Boobah, a musical Nemo book and a puzzle. There were two other things that I brought home for him to open at Christmas. The social work dept also gave him a gift and Gracie too. My right arm got two inches longer after dragging those bags out of the hospital all the way to the car.

Kevin also had a little bit of torture yesterday and it was Mommy's fault. I went to sit him down in his crib and I heard the tape on his face pulling. I looked at him and his feeding tube was stuck on the crib handle and it was pulling his poor little face! Before I could grab it - it pulled out. It was time for his tube to be changed to the other side anyways....but I still feel like crap that it happened. He didn't fuss when it got pulled. But he fussed like crazy when he got the new one put in. It was quick.

Kevin will not be coming home today as planned. He will be released tomorrow. They had a cancellation for the MRI lab so Kevin will get his today at 4pm. Chris and I will both be there for that. BUT - it may be canceled. (There are no more openings for the MRI lab until March!) Kevin has to be put on a respirator for this MRI. Because of that, he will need to go to the PICU afterwards to be taken off and recouperate (for a couple of hours). There are no PICU beds open and Kevin is on a wait list. If no PICU beds open, they will cancel his MRI. Then we will be screwed. I don't know how we will get it done before we go to CA. They said it needs to be done because Kevin could be at a high risk for a stroke or aneurism due to the Alagille's Syndrome. I don't think that will stop us from proceeding with his surgery. He's come this far - we aren't stopping. God will do whatever He's going to do.

I've got to run. I'm at work and I have to get things done before I leave for the hospital. I will write tomorrow to let you know how it went. I will also be working 1/2 day tomorrow and then Chris and I will pick him up around 1pm. Take care!

Tuesday, December 20, 2005 6:59 AM

We have been told that Kevin will probably be home Wednesday or Thursday! Home in time for Christmas! The hospital said that they can't get all of the tests done before he leaves. They can do the endoscopy and colonoscopy (poor kid) before he is discharged. But the brain MRI can't be scheduled. That's not going to be easy to get approval for after he is discharged. Dr. Schwarz wants it done before we go to CA so we may have to pay for it if insurance won't.

I also received a call yesterday from the oxygen company. We need to submit paperwork to certify that Kevin needs to have spare oxygen in the home for emergencies and justify the pulse oximeter (that is used more than 10 times a day.) More paperwork. I will have to get Dr. Ringel to do that because Dr. Uma is gone until February. He'll probably do it faster anyways (and not charge me for it.) I mentioned CA because the woman was interested in what was going on with Kevin. Well, then she told me that we can't take oxygen on the plane (which I knew), or take the pulse oximeter with us because it isn't our equipment. It's rented. I was going to try to arrange for oxygen to be availalbe on the plane in case of emergency but she said that a lot of airlines won't because it's flammable. I also asked her about purchasing the pulse ox. It costs $250 a month and we've had it for 1 1/2 years. The thing costs $1200. Why haven't we paid it off yet?? They made more than enough profit off of it. Don't you think? Plus, if we pay for it, then we don't have to worry about taking it with us. Actually, I don't get that part of it...even if it is rented, why can't we take it with us? It's not allowed to leave the state for some reason? It's being paid for so why should they care? Oh well...deep sigh...

Kevin had to get his 5th urine catheter placed yesterday. They keep breaking in the same spot. (Hang in there kiddo - only a couple more days and that thing will be long gone!) My poor baby is going to be miserable after his endoscopy and colonoscopy. I didn't even know he was going to get the colonoscopy until last night. But they need to see if anything is going on in there that could be causing such loose stools for so long. I get to go to the hospital tomorrow. I can hardly wait. It would be even better if we could bring him home. If so, they need to tell us now. I have a lot of things I need to get back in place for him. Almost all of his medications have expired and I need to get them refilled. And they have put him on new medications so I need to get those filled. He is now up to 64 cc's of formula an hour (or 63, I don't remember). It doesn't seem like much, but we will run out of his food faster. I will see if I can get approval for 1 extra can a month. He hasn't thrown up the entire time he's been at JHU. I don't know why. Maybe there is something going on with the meds at home that is making him sick? I'll be curious to see if he starts to throw up after the nursing starts back up. Speaking of nursing; I know we won't be able to get coverage for Christmas time. I don't expect anyone to work days at that time, but the nights would sure be helpful. I'm gonna be one tired momma. It's worth it though.

I finally received the extension for the cardiac cath to be done in CA. I have faxed that off this morning. We're getting closer!!!

Take care everyone!

Monday, December 19, 2005 7:55 AM

Kevin is still doing fine. They are still working on getting him "tweaked". There was a little issue on Saturday because his belly girth had gotten bigger. Over 2 centimeters bigger. They took an x-ray and they didn't seem worried over anything. Dr. Schwarz was the Attending this weekend. She said that his spleen felt very large to her. That could mean a problem with his liver. Well, more of a problem than there already is. She said she was going to have to tell Dr. Hanley at Stanford about this new issue. I hope it isn't something that will get his surgery canceled. Of course we have to do whatever is safest for Kevin. She also wants Kevin to have his brain MRI done before we go to CA. As of yesterday, she wants him to also have an endoscopy done. She said she would schedule that for the end of the week. I said, "Well, so much for going home early this week." She said she could schedule it as outpatient, but they both need to be done before we go to CA. It's harder to do these things as outpatient, plus I would need to get referals for both tests. So we said to go ahead and get it done while he is there. He is down to 5 cc's of fluid through his IV and up at 60 cc's of formula and his urine output is doing fine. They keep checking his levels and he needed some sodium bicarbonate yesterday. He can't come home until his system catches up and does what it's supposed to do.

But when Mommy and Daddy are there he gets held. He wants you to stand up and hold him and he feels like 50 pounds after you've done that for 15 minutes. He also likes to empty out the alcohol wipe box one at a time. He throws them to the left...then to the right...it's a mess, but it's fun watching him do it. His rash is getting better - but it's still pretty bad. His little doo-dads aren't bleeding anymore. But a couple spots on his hiney are. The spot on his belly that was a wound has almost entirely healed underneath the duoderm. He also needed another catheter placed this weekend. That was his 4th one for this admission. Poor Anna Ruth seems to have him every time he needs a new one and she hates doing it to him.

I'm here at work, so I have to get off the computer. Take care. I'll let you know when his tests are scheduled. I just asked the nurse to find out today.

Friday, December 16, 2005 7:54 AM

I miss my boy. I wish I could be with him every day. I feel good knowing that Chris is there with him - but I want to be there too. Chris said that when he looks in Kevin's room and Kevin is awake, that he is just staring at the doorway waiting for someone to come in. He's all alone in that room. Even if Chris can only spend 5 or 6 hours with him each day, at least it's some constant attention for Kevin. It hurts you to walk in his room and see that he is sitting in poop with that horrible rash. The nurses have other children to watch so they can't sit on top of him. But we wish they could. I can't sleep at the hospital and then come to work. It's impossible to rest there. I pray that he will be home very soon.

Chris said that his poop's have slowed down, but they are still pretty much just water. He's getting 57 cc's of formula so I don't know what's going on. His weight took a dramatic drop since going through all this. Four pounds to be exact. But some of that was water retention from the kidney failure. We are trying to get him back up to the weight he was at his last GI appt on 10/28 which was 11.9 kg. He is 11.4 kg now. The diarrhea isn't helping with that issue either.

I've got to run. Take care everyone and have a great weekend. (I know I will because I'll be holding my baby boy!)

Thursday, December 15, 2005 6:46 AM

Kevin had a sonogram of his kidneys on Tuesday when Chris was there. The technician who did the sonogram said that they were very pink and were hit very hard. That worried Chris. I reassured Chris that he wasn't the doctor and he wasn't the one we needed to listen to. We needed to wait to see what the doctors said. The renal doctor had told us on Sunday that she was positive about his kidneys recovering, so we aren't worried. The GI docs came in yesterday afternoon and told us that the kidneys look OK. His blood levels are hanging in there too. The major problem Kevin has right now is horrible diarrhea. HORRIBLE. Chris had told me that his butt looked bad, but I wasn't prepared for it when I went in yesterday. His little doo dads were even bleeding. He is extremely uncomfortable. We just leave him laying naked on his side with air blowing on him when he's in his crib. The doctors don't know what is causing the diarrhea. They are changing his formula to see if that helps. They are also cutting one of his new meds in half to see if that helps. They are just grabbing at straws right now. But Kevin can't come home with the diarrhea because he needs the IV fluid to help him not get dehydrated.

They have also stopped the antibiotics. His cultures were negative, but his WBC count was still high. His fever also subsided. They can't keep him on antibiotics if there was no known source of infection. We are hoping that the fever came from his vaccinations he received on Saturday. I asked if that would have caused his high WBC count and they said it could. So, hopefully his fever is gone for good and he won't need anymore antibiotics. That could also be contributing to his diarrhea. It has also given him a yeast infection.

He had to have his uring catheter changed again yesterday. This is his 3rd one so far during this hospital stay. They keep breaking. Because of the catheter, he has to have tape on is belly to hold the line in. That tape gave him an open sore on his belly. Actually, 3 sores. One is just a lot bigger than the others. It looked pretty nasty but looked better after it was cleaned up. We put duoderm tape over it. That is the same stuff we put under his cast over the wounds on his legs. His skin healed underneath so I think it will heal this time. Let's hope so. Our little guy just can't seem to catch a break! So many little things are making him uncomfortable.

I got to go to the hospital yesterday. I had missed him. I got lots of cuddle time with my baby boy. He would sit on my lap and rest his head against my shoulder and snuggle. He started to really get in to Barney and the Teletubbies. (I can't stand either of those shows.) He was even waving to the Teletubbies when they would wave and say "Hello". There's nothing wrong with his mind, that's for sure. Then he wanted to play with stuff in my purse. He emptied almost the entire purse by throwing it all on the floor one thing at a time. At one point he had both arms in there down deep trying to get a hold of a receipt. (He loves to chew on the paper.) He couldn't get it and started to yell in frustration. It was kinda funny.

Chris is going to the hospital by himself today and tomorrow. The weather is supposed to get bad so he may stay a little later than normal. But that's OK, I'm sure Kevin will appreciate the quality time.

The kids Christmas pictures came in. I will try to get them posted on the web for you.

Tuesday, December 13, 2005 6:53 AM

Kevin was still having issues with his fever yesterday. They ordered an EKG and chest x-ray to make sure nothing was going on in his lungs and to see if he had any fluid around his heart. Those tests didn't show anything of concern to the doctors. So what's the problem? They still don't know. Chris told me that he read the paperwork that came with the shots Kevin received. One of the shots can cause a fever as high as 105 up to 48 hours after the shot. The problem is, his white blood cell count is still high (18,200) which shows infection. That count was as of this morning. He is on 2 antibiotics. They want to cover any possibility of infection through his central line and his bladder. He has a catheter in and infection could get in there easily. His fever was very low last night and this morning - but it's still there. The nurse who had him last night said he was whiney, but when she would come to see him he would play peek-a-boo with her. He probably just wanted the attention.

His diaper rash seems to be getting just a teeny bit better. He was also having issues with his potassium, sodium, cratnine and other levels. Those are all now in the normal range - except, now his platelets are low. They don't know why that is either. Because of that, they won't be taking his temp rectally any more because they could damage blood vessels and that would be a problem because of the platelets. I'm sure Kevin doesn't mind that at all. Although he screams when you take him temp in his armpit just as much.

Chris said Kevin was whiney yesterday too, unless he was being held. He also said that Kevin was more tired than his usual. Maybe he didn't sleep well the night before. I don't know. I want him home. It's pretty boring without him there. I look at the clock and think "oh my gosh - it's time for his meds!" and then I remember that he isn't there for me to give them to. I sit at night and wonder what he's doing. If he's awake or not. If he's crying. Chris and I try to always wait until he's asleep to leave. It's hard to leave him when he's awake. But then I think about him waking up later and looking for us and we're gone. It seems cruel to me. Leaving him period seems cruel. But he's in good hands there. I'm starting to get depressed so I'll stop.

I will be going to the hospital with Chris tomorrow and then go back to work for the rest of the week. Chris calls me at work to give me updates on Kevin while he's there. I get to hear Kevin in the background. I pray that he will be healthy (as healthy as Kevin can get) and home to us soon. Take care...

Monday, December 12, 2005 7:09 AM

Kevin is still hanging in there, but he is having problems. We were told by the renal doctors that he has almost 100 percent chance of getting his full kidney function back, but it may take some time. They don't know how long. Kevin was having problems with putting out too much urine late in the week and over the weekend. But there was a little mishap on Saturday and Kevin got way too much IV fluid. Because of that, they stopped his IV fluids and he was only on formula. (He is now up to 57 cc's an hour.) It wasn't enough. His pee slowed down to a trickle and was very dark brown. He got very thirsty yesterday and started to get dehydrated again. They put him on 50 cc's of IV fluid per hour around the clock. I haven't called to check on him yet to see how he did last night.

The renal doctor explained that with formula only, he is not getting enough fluids to sustain him. He is peeing and pooping more than he is taking in. He can't go home on IV fluids. And he can't get too much by mouth because it will just make him throw up. They are trying to figure out what to do...

He received 3 of his immunizations on Saturday. All at the same time. I had asked for Motrin before hand and the doctors said he couldn't have any because of the kidney problem. She said he could have Fentanyl. He doesn't need a narcotic for shots. I wanted the motrin for the achiness after the shots. Fentanyl is a short lasting medication and that wouldn't help. I said that he would get nothing then. She looked at me funny and asked again. I explained the reason again for not giving him Fentanyl and she walked out. I don't care if she thought I was a bad mother for that. I just didn't see the point in giving him something that is 100 times stronger than morphine just for shots. He did just fine anyways. It hurt like hell, but he was over it in 15 seconds.

Then he got a fever that night. A high fever. They thought maybe it was from the shots, but the fever stayed high the entire day on Sunday. And of course, he still can't have motrin to bring down the fever. So he got nothing for the fever. His temperment was excellent though. He didn't act like he was feeling bad at all. He was playing peek-a-boo and blowing kisses and laughing. They took cultures of his central line and his urine. He's had a cath in for a few days so he might have a bladder infection. They started antibiotics, but they have to be careful with the dosage because of the kidney damage. This kid just can't catch a break!

It's just a day by day thing with Kevin right now. Waiting for his kidneys to fully catch up and do what they are supposed to do. We don't know how long that will take. I've wondered lately if they will put him on dialysis anyways. They haven't mentioned it - but it's in the back of my mind.

Chris is going to the hospital alone today and tomorrow so I can get back to work. I will try to see Kevin on Wednesday. It really stinks going to the hospital alone. I should know - I did it for months on end.

Well, I've got to run. Thank you for all of your prayers. Kevin will get through this - he always does.

Thursday, December 8, 2005 9:07 AM

He's just about back to his old self. We spoke to the renal doctors and they aren't sure what happened, possibly dehydration, but his kidneys should make a full recovery. The dehydration idea doesn't really make sense to me because I don't see any reason why he could have gotten dehydrated. And he also didn't show any of the normal signs for that (until I discovered the reduction in pee.) Oh well, the main thing is that he will get all of the function back in his kidneys and we are still a "go" for January's surgery.

Kevin was taken out of the PICU yesterday afternoon and moved into IMC on his regular floor with his regular gals. We did hit a little milestone yesterday afternoon...Kevin can sip through a straw! Now you can't have anything to drink around him if it has a straw because he goes berzerk! His temperment is just about back to normal. He's still sleepier than usual. He also has swollen legs and feet. (His little doo-dads are also swollen.) They said it is probably because his albumin is low, but it's getting better so that should go away. He is also being monitored closely because of issues with potassium, calcium, albumin and creatnin. Once he gets back on track with all of those - he can come home. Possibly by this weekend.

They finally started to feed him yesterday evening before we left. He is getting 20 cc's an hour. He hasn't eaten since Sunday so I'm sure he was starving. That should help out his poop. He has been having very wet, dark, dark green poop since he hasn't been eating. It doesn't help his diaper rash any. It also stinks when he is sitting on your lap and it runs out onto your pants. Luckily I had on black pants yesterday.

The cath for CA has been verified for January 23rd. We will probably go out there the Saturday or Sunday before. Now I just need to get approval for that again from the insurance company. The previous approval expired in November. So much to do - so little time!

I have also changed my mind about another car for Kevin...he's now grounded for stressing mommy and daddy out and giving me an additional 112 gray hairs. Sorry kid.

We send our love to you all and gratitude for the prayers...take care.

Tuesday, December 6, 2005 9:29 AM

He's pulling through! I called yesterday before we left to go to the hospital and they said that they canceled the surgery because his blood results were getting better. They put it on hold to figure out what they were going to do. Chris and I got to the hospital about 2pm. Kevin's swelling had gone away. His temper was better - but he was still very cranky. He's finally taking his "B" and it soothes him. And he had urine output!! His kidneys are starting to function again - on their own! Praise the Lord!

We were told that dialysis isn't totally out of the picture yet, he may still need it...but in my heart, I don't feel that he will. They have absolutley no idea why this happened to Kevin or how in the heck he has gotten himself through this. Dr. Schwarz stopped by yesterday afternoon. She was getting ready to leave for a conference out of town. She gave us hugs and said that Kevin was doing so much better than anyone thought he would. She did confirm that Kevin's liver is NOT failing at this time like we had been told. (They told us that he had hepatic-renal failure. In which case Kevin would pass away.) When we asked a couple of questions, her answer could only be to raise her hands like "who knows?". It's Kevin. She said that Kevin deserves respect, meaning that nobody in that hospital should underestimate him. She told us that she had contacted the doctor at CHOP who is the authority on Alagille's Syndrome. He said that some children with Alagille's do have kidney problems, but most of them are deformaties in the kidneys. Kevin doesn't have that. I then asked her about the results of the blood testing that was done on Chris and I. She patted her pocket and said that she had been saving the best for last...she had our results. Neither Chris or me carry the gene that causes Alagille's Syndrome. Oh boy - we both started to cry. Then Dr. Schwarz gave us more hugs. I know she was excited for us. Neither one of us will have to bear the mental load knowing that we were responsible for Kevin's condition. Even though it was unknowingly and out of our control, you can't help but feel hurt and somewhat guilty by knowing that this happened to your child because of something within yourself. We now know that we can have more children with a very minimal chance that this could happen again. Before, there was a 50 percent chance that another child could have Alagille's Syndrome and we weren't taking that chance. We know that Gracie can have children without worry.

I held Kevin most of the evening. He was extremely thirsty. He watched his Baby Einstein movies and layed on my lap while sucking on a syringe full of Pedialyte. As soon as the syringe was empty he would holler horribley.

I called this morning and his night wasn't the best since he is still fussy and restless. But as the acid is removed from his system, he is getting better. At least he is able to rest soundly at times. He has a catheter in so they can monitor how much urine output he has and they are replacing that with IV fluids. He doesn't seemed bothered by it. It must have hurt going in because while at Shady Grove, they ripped his foreskin while pulling it back to get a urine cath. Speaking of Shady Grove, the doctor that was in the ER was a JHH ER doctor and he stopped by to check on Kevin yesterday afternoon. He said that he underestimated Kevin's acid level and apologized. It's OK with us. We don't blame him for anything. I think he learned a lesson from that day and I think he will remember it. I hope the PICU doctor learned a lesson too. He was wrong with the diagnosis and put us through hell. He never bothered to come back to us and talk to us. I just hope he learned something from that experience. I did. I should have known better than to listen to him and give up on my son. They don't know it all. It's in God's hands. And God is going to do whatever He wants to do - no matter what the doctors say. Kevin is proof of that. I better run. Take care everyone and thank you for your prayers. He's our little miracle. I think Mommy needs to promise him another car!!

Monday, December 5, 2005 12:36 PM

We left Shady Grove hospital "AMA" at 6pm last night to take Kevin to JHH. Kevin had stopped making urine and this was too difficult for Shady Grove to handle. He still had no fever, but his white blood cell count was 22.5 which was a sign of infection. The doctor said that Kevin probably had an ear infection. There was a lot of fluid on one ear and the other was retracted and swollen. That would be causing Kevin pain and would be why he wouldn't suck on his "B". We didn't want to wait for an ambulance to come to pick us up so we drove ourselves. We weren't in the ER long at JHH. They called in the doctor who did Kevin's last ECHO to check his heart because it was beating at 30 bpm lower than usual. The acid level in Kevin's body was at a toxic level. His heart is functioning - but it's struggling. He has no reserve so his heart can't handle too many toxins for much longer. It will give out. Kevin had a head CT scan and then went up to PICU. We were told that his kidneys are not functioning at all at this point. He is in renal failure. They did a sonogram of his kidneys to see if there was a blockage and there was none. They just aren't working. Kevin is swelling up as each hour passes because he can't get rid of fluid. He also can't clean his blood. This is affecting his breathing. Eventually, Kevin would stop breathing on his own. After the results of the kidney sonogram came back the PICU doctors came to the bedside. He told us that Kevin's liver was also not functioning. Two of his organs had failed and the heart was struggling. He told us that since his liver wasn't working that he wasn't really a candidate for kidney dialysis. His blood isn't clotting and he would have complications just trying to get the large catheters into his veins for the dialysis. He told us that the other option would be to do nothing. Kevin would need to go on a breathing tube and they would keep him comfortable. Eventually the toxins would build up in his little body and he would pass away within a week. What the hell? This isn't supposed to happen! Nobody ever told us that this could happen! He has come so far. Do you give up and let him go or keep fighting? You can't imagine what it's like to be faced with that. It was 2am and Chris told the doctor that he wanted to talk to Dr. Schwarz. She was paged and she called back. She didn't think that Kevin was in liver failure. She didn't think the results of the blood coagulation were correct. She wanted them taken peripherally rather than through his central line. If they came back OK, then Kevin has a chance. He would be able to try dialysis which would give his kidneys a break to see if they would funtion on their own again. They had taken a lot of blood from Kevin's line and the PICU doctor said that if those came back abnormal, then they would stick Kevin. But he didn't see how it would make a difference. He was wrong. At 5:30am, Kevin's blood results from the peripheral stick weren't great - but they were good enough. They have scheduled a surgeon and Kevin is going in to the ER today to get the catheters surgically inserted so he can go on dialysis. Kevin is very uncomfortable and restless. He has been for almost 2 days. The acid in his system is what is making him uncomfortable. I can't help but think if things would be different if he were taken in sooner. I knew something was wrong, but I didn't know what. I can't dwell on that -but it's one thing that keeps popping in to my head. I have never been so emotionally beat up than over the last 2 years. This morning at 2am we were told pretty much that our son would be dead in a week. So many things go through your mind. How will I tell everyone? What is Kevin going to go through before he goes? What do we tell his sister? What about the funeral? Why is God taking him after all that he has endured? Well, God isn't taking him yet. We pray to Him that this dialysis works and Kevin can keep going. That boy is special. God needs to keep him here with us. We'll keep fighting. If Chris hadn't asked for Dr. Schwarz to be called...then Kevin would be closer to heaven right now. That move may have saved Kevin's life. We don't know if this dialysis is going to work or not. But we'll just have to wait and see what our little guy does. He's come through so many things that he wasn't supposed to. I know he is in your prayers. Take care.

Sunday, December 4, 2005 8:22 AM

I don't know what's wrong with Kevin. He doesn't have a fever and I think he's pretty much over his cold. But there is definitely something wrong with him. Chris and I will be taking him to the hospital this morning as soon as Mom and Dad get home from church to take Grace. I was going to have the IV company come and get some blood work from him tomorrow but I don't think he can wait. The longer we wait, Kevin could just get worse. Hopefully blood work taken at the hospital will let us know what's going on with him. He is so miserable. I'll be in touch as soon as I get a chance....pray for our little guy.

Friday, December 2, 2005 6:51 AM

Nina and I took the kids to get their pictures taken last night. I really need to get used to the stares that people give us. Actually, I think I am used to it pretty much. It's when people walking the opposite direction actually turn around to stare. One lady last night almost walked into a display because she was looking so hard. Some people have this sad look on their face and some people kind of half smile. I don't mind those. It's the ones that have a look of disgust on their faces that irks me. The girl who took the pictures was excellent with the kids. Later on she did ask why he was yellow. I said, "Because he's lemon flavored." Just kidding - I didn't say that! I briefly explained the situation to her. I got to see the pictures on the computer before I picked them out. I'm not going to lie - I was disappointed. Kevin looks REALLY sick. I know, I know, he is really sick. But he doesn't look that way to me in person. He had his finger in his mouth for a lot of the picutes so I didn't order any of those. I wasn't in the room for the pictures because he kept crying and putting his arms out for me to pick him up. He was totally fine when I stepped out of the room. I ordered the few that I thought turned out the best. Sears has the ability to put them on line so they should be up soon. I will list the password and account so you all can look at all of the pics that were taken last night.

Then we took Gracie to see Santa for her first time! She did just fine. She asked for a Barbie and a Christmas tree. I told her to ask for a new car for Mommy - and she did. A purple one.

Then we stopped in the mall to get her a bite to eat. Kevin sat on Nina's lap and snuggled. He did well last night. He fell asleep on the way home. His fever hasn't come back since the other day. He's acting OK - but not his norm. We're just keeping an eye on him.

I sent a note to Stanford again because I hadn't heard back about the cath. She said she hadn't had time to schedule it yet. I sure hope we can get it for that Monday. I don't want to have it too close to his surgery. It takes him a long time to recover from the anesthesia. I don't want him to just start to feel better and then have to go for surgery the next day. My stomach is getting upset thinking about it. I'm getting nervous about the surgery.

We hope you all have a great weekend.

Thursday, December 1, 2005 6:49 AM

Nina called me before I left work yesterday to tell me that Kevin had a fever and was lethargic. I gave him Motrin when I got home and prayed that he wasn't getting an infection. His fever was only 100.7. I knew if the Motrin didn't help him, then we would be going to the hospital that night. But, he seems to have pulled through. He was acting fine that evening. He wasn't totally himself. He was a little fussy and wanted to be held constantly (but that's not really out of the norm for him.) THe nurse said his fever didn't come back last night and I told the day nurse to keep and eye on it. Nina and I are supposed to take the kids to get their pictures taken tonight....I'm not so sure because of the fever and him just getting over a cold. But I also don't want to wait until the store's get busier. We are also going to see if Gracie wants to see Santa. She never has. She wasn't even 2 when Kevin was born so her last couple of Christmas' have been pretty uneventful. We've never been able to get her to the mall to see Santa. I've been practicing with her telling her what he will ask her. She keeps saying that she wants a Christmas tree. Oh well. She'll probably freak when she sees him and won't want to sit on his lap. Not a problem.

She was asking me questions about Kevin last night. She said that Kevin was sick and then asked why God made him that way. What do you say to that? I told her that I didn't know why, but God made Kevin special. She said we would have to go to Heaven to ask God why Kevin was sick. Then she asked if Kevin was going to Heaven. I said that he will one day, but hopefully not for a very long time. I explained that God will be the one to make Kevin better too. I told her that God made the doctors that will be able to help him. Then she got quiet and didn't talk about it again.

She does need some one-on-one time with me. Next Tuesday I will surprise her by picking her up from school and taking her to lunch and then a movie. Yes, I will take her to another movie even though I swore she would be 15 before I would take her again. She told me a couple of weeks ago (out of the blue), "Mommy, I had to cry at the movie last time because I had a boo boo and the popcorn hurt it. I just had to cry." I told her I understood about her boo boo, but she didn't stop crying and that's why we had to leave. She said, "Yeah, I know." I sure hope it goes better this time. I just won't buy any popcorn!

I just received some new paste for his hiney. We started to use it last night. It's easier to use than the ILEX. I hope it will work as good. I also got some new syringes. It's an amazing difference. The old ones are tight. The new ones glide like silk. (No, it doesn't take much to please me. Something like new syringes and butt paste make me happy.) It's something that will make my life just a teeny bit easier.

Well, I've got to run. Please pray that our little guy's fever stays away and he doesn't get sick. Thanks everyone!

Tuesday, November 29, 2005 6:34 AM

Kevin is just about over his cold. It sure has taken a while. He still has a cough, but most of the congestion is gone. His attitude is improving also. My cold is getting better VERY SLOWLY. I stayed in bed the entire morning on Saturday. We had a new nurse for Kevin and Chris took care of Grace. And Grace took care of me. She kept bringing me water (she said it would make me feel better), she kept pulling up the covers for me and she would rub my head and ask if there was anything I needed. I needed the rest that morning and I'm glad I was able to get it.

Kevin is giving me trouble with his feeding tube. I have to replace the tape at least once each day because he pulls it off his face. We are only alloted 10 pieces of tape a month from Medicaid. I cut them in half which helps. I also have a little stash going on from the times when I didn't have to change it as often. I will call to see if I can get that increased. It's sad when you have to ration tape! I tell him "NO" when he's pulling it - and he cries if I say it too loud. He's sneaky about it. He waits until you aren't looking. You can't leave him alone for 2 seconds because he will pull it all off. Then you would have to put in a new tube and nobody wants that.

His hiney has gotten bad again. I don't know how it happens. I tell the nurses to stay on top of changing the diapers and of course us regulars (Nina, me and Chris) change it immediately. He's even bleeding above his hiney crack at his lower back. It's very raw. His poo is loose so it goes up the back if the diaper and I guess it sits there when he isn't getting changed fast enough and it eats his skin. I changed his diaper the other day and I had to use 4 different creams - ILEX and petroleum jelly for top of his crack, Desetin for the rest of the crack and A&D ointment for his front parts (Desetin makes him raw in the front for some reason.) I closed up his diaper and after all that - he pooped within 5 minutes and I had to do it all over again. His Uncle Tim brought over diapers this Saturday and it was a Mega bag. I told him that they would last less than 1 week - we are over 1/2 way through them already and it's only Tuesday! I need a teeny, tiny plug for his teeny, tiny hiney!

I told you all about Kevin playing peek-a-boo (but he only covers one eye.) He does it all the time. You say, "Where's Kevin?" and he covers his eye. You have to act very surprised when he takes his hand down and he laughs. Well, everytime I ask Chris or Gracie where something is...Kevin covers his eye for peek-a-boo. He hears "Where..." and he instantly covers it. No matter what he's doing or playing with. He's too funny. He's also trying to sing "Itsy, Bitsy Spider". I sing it to him all the time and he was singing to himself last night when I was changing his diaper. He had his arms raised in the air and hands together like he was doing the spider part. He's no where near where he should be for a 2 year old, but we are so pleased with the little things he can do. I was thinking the other day that my 2 year old son can't even roll over yet. Then I look on the positive side and remember that he can't fall out of bed or off the couch! AJ's Mom said he couldn't do a lot of stuff before his heart was corrected and he blossomed afterwards. Hopefully that will be the same for Kevin.

I checked places to stay around Stanford. Everything was booked. I have also looked for a furnished apartment to rent, but haven't found anything yet. We will check the Ronald McDonald House too, but that will probably be full. I'll try to get in touch with a social worker out there to see if she can point us in the right direction. I haven't gotten confirmation yet from Stanford about his cath. I requested that for Monday, 1/23 and I didn't hear back. That was a week ago. I'll send her another note. I don't want to make any travel arrangements until I get that confirmed. Heck, I don't want to make any travel arrangements at all because it's going to be such a pain in the rear! I'll handle it and it will all fall in to place. Maybe it will go smoother that I think.

I'm gonna sign off now. Have a great day everyone!

Friday, November 25, 2005 6:37 AM

Man...I was so hyped up about Kevin's first Thanksgiving at home and the little bugger slept through dinner! I had even gone in and poked him to see if he'd wake up. He just snored away. Ah well, that was OK. At least we had him home. He woke up in time for dessert and had a little taste of Cool Whip. Then Chris gave him a little gravy. That combo would have made me sick, but Kevin didn't seem to mind. It was a good day overall. I hope you all had a good Thanksgiving too.

We have a new nurse today. Thank God Chris is home today! The day nurse had told me on Wednesday morning that she wouldn't be in on Thursday and she wanted to come late on Friday so she could go shopping. Well, I have to work on Friday. She said, "So, what do you want me to do?" I told her that she needed to contact the company so they could do something about Friday because I can't go in late - it's a regular work day for me. She said she wasn't sure what her plans were and that she would call me that afternoon. THEN, we get a call that evening that she has called off for Thursday and Friday. All day. She never bothered to call me and tell me. Chris and I were both taken by surprise. She has every right to take off, but the notice really stank! The company said they would send someone new for Friday. Chris is home and helping her because she doesn't know what she's doing. He had some things to do today that will have to wait until he sees that she can handle Kevin. We just can't leave him with someone new that doesn't know him and that he doesn't know. It stinks for him to have these different women coming in and out of the house all the time. It stinks for us too. But we are grateful that we have the help. I guess we need to keep looking on the brighter side of things right?

Kevin is feeling a little bit better - but he's still sick. He is in a good mood about 30 minutes a day and he wants to sleep or be held for the other 23 1/2 hours! Gracie's cold is doing better too. Maybe it was the little bit of liquid soap I put on her tongue the other day that did the trick? Hey, she had many warnings but she stayed nasty. And it worked! It was just a little dab. My cold is about the same, if not a little worse. (I guess I could try the soap trick myself- nahhhh.)

It should be a quiet day at work for me today. I'm hoping to have time in my lunch break to write my Thank You notes from his birthday. I'm sorry those are late. I haven't had any down time since the party.

We hope you all have a great weekend. Stay safe if you decide to go out shopping! Those shoppers get dangerous! And don't forget to send me your recipes please!!

Wednesday, November 23, 2005 7:56 AM

Kevin seems like he is feeling better - but he's still not himself. Nina got some boogies out of his nose yesterday afternoon and they were green which I was told usually means a sign of infection. (I'm sorry if I'm grossing you all out talking about boogies.) I really don't know which direction to go with that...I don't believe that Dr. Uma won't be any help and I don't want to go to Dr. Schwarz because she isn't his primary physician and it's not her responsibility. And he seems to be doing better so I think I may wait. But if I wait and there is something wrong, it could be detremental to my son. AAAHHHH! I guess I can see how he does today and then take him to Nighttime Pediatrics to have him checked out this evening. They can give antibiotics if needed. Or they wouldn't touch him like others places because he is "complicated". I really don't want to go there anyways because they have been sending me nasty notes about a $25 bill. It's a bill I won't pay because they owe me $57. I've been trying to get my money back from them since July. Ya know, it's only $57, but that pays for things that Kevin needs. That could pay for 2 medications. It's the little stuff like this that unnecessarily takes up my time. It's also just one more thing that I have to remember to keep following up on. It takes up space in my brain that I'd rather have to remember something more important. (whine, whine, whine.)

Speaking of money - Chris and I are so fortunate that so many people are helping us out. Friends and family are such a huge support. Chris' company has started a fund for the cost of Kevin's care. They are putting together SO many wonderful things to help raise money for Kevin. One person at Chris' company even took a flyer that has been made and went to Giant and sat outside and collected $80. I was told it was out of character for this shy person to do this but he cared and wanted to do something for Kevin. It brought joy to him to be able to help. Chris is going to talk to him this week to tell him how much we appreciate what he did. Mary and Mark are the spear-headers for all of the efforts at Chris' workplace. They have done a phenominal job. Words just can't express our gratitude. Chris' co-workers gave part of their bonuses to Kevin's fund this week. One person gave his entire bonus. (Oh gee, I'm starting to cry...) There's even a woman in Texas with her own sick child that is helping with sending money every couple of weeks. Everyone's unselfishness and caring is just amazing. I just can't say "thank you" enough. Because of everyone's generosity, Chris and I are no longer worrying about funding our trip to CA or buying the things we need for Kevin's care. We love you guys!

Mary is putting together a cook book right now and we are requesting recipes from friends, family and anyone who wants to contribute a recipe. I have it in an e-mail attachment. I don't know how to attach it to this website. You all can e-mail me if you want me to send it to you. Right now it is making it's way through Rockville City Hall and we've already gotten some recipes. Also, there is a website from Chris' company (Vortech) and they have a link for Kevin. It is www.govortech.com/caringforkevin.htm Last time I checked it wasn't up and running yet, but my sister told me last night that it is now and it looks fantastic. I will check it out today. She couldn't say enough about what a great job Mary and her co-workers have done with this. She was amazed. Mary's an angel. Mary, our families thank you from the bottom of our heart's.

We hope that all of you have a wonderful, safe and happy Thanksgiving. We are blessed that our little boy will be sitting at the table with us this year. Take care everyone.

Don't forget to let me know if you are interested in submitting a recipe!!

Monday, November 21, 2005 8:57 AM

Everything went fine on Friday. We haven't spoken to Dr. Ringel, but the doctor that did the ECHO said that he feels Kevin can wait until January for the surgery. His blood gas was 79. We have scheduled Kevin's surgery for Friday, January 27th and the cath is tentative for the Monday, January 23rd. My stomach is getting upset just thinking about it. Chris and I (and Kevin) will be new to Stanford. New to the nurses, the doctors and their ways of doing things. I just want Kevin to be comfortable. I guess he will be as long as we are there with him.

Both of the kids have colds. We didn't have any nursing help for the day shifts this weekend - we are lucky we had night coverage. Kevin was up a lot at night because of coughing. We have to suction his nose a lot. He doesn't mind it because it makes him feel better. I think his daddy has come close to throwing up a couple of times when I'm pulling them out of Kevin's nose. It's kinda funny. I don't think there is any medication out there that I can give Kevin for a cold. They have Tylenol cold for infants - but he can't have Tylenol. I put the Vick's baby rub on his chest this morning. Hopefully that will help him out. He keeps throwing up mucous. Better out than in. Both kids want to be held and snuggled constantly. Chris took on Gracie while I had Kevin yesterday morning. Kevin slept a lot that morning. So, now that both kids are sick and sneezing and coughing in my face - I'm catching a cold. There is some medicine that you can take when you feel a cold coming on that will make the cold go away faster. I can't remember what it's called. I'm gonna run to CVS on my lunch break to find it. I can't have a cold. I don't have time for a cold!

I've got to run. Take care!

Thursday, November 17, 2005 6:46 AM

I remembered what I forgot to tell you. It was something that Dr. Schwarz told us at the last GI appt. She said that they have now discovered another trait of Alagille's Syndrome is a problem with the blood vessels in the brain. She said that the kids should get MRI's to check for this, but the health insurance companies won't pay for it. She said they have a grant with NIH and are hoping that eventually NIH will do the MRI's as part of the grant. I'm not worried about this last discovery. They don't seem to know too much about it yet and they didn't say what the potential problems are if that has happened in Kevin. I've got enough on my mind. Besides, I think they said it only occured in 30 percent or something. We won't worry about it.

Gracie got her first haircut - ever. Yes, she is almost 4 - but she had the prettiest long, curly hair. Now it's about 4 inches shorter. Mine is about 7 inches shorter. I hadn't had my hair cut in a year and half! She did really well. And she likes her haircut.

Chris and I get to go out to dinner tonight! Judy is watching Kevin and Gan and Pop are watching Gracie. We are using a gift card that Dawn gave to us a while back. We don't get out much...actually, we don't get out at all. So this will be a special treat for the two of us.

Kevin is doing well. I don't think he acutally has a cold. His nose isn't runny. But he gets boogies and he is sneezing a lot. He can't get his ECHO tomorrow if he is sick - they can't sedate him. I'm not sure when we will get the results of the blood gas. I hope we don't have to wait until after the weekend.

He was a pretty good boy yesterday evening. He had a huge accident and poop was up past his belly button. So he got an early tubby. He has a new game. It's called, "Let's throw the sopping wet wash cloth out of the sink at mommy." At least he gets a chuckle when he does it. He kept trying to play peek-a-boo in the tub which got soap suds in his eyes. But it didn't stop him from doing it over and over again.

The regular night nurse couldn't come last night so one of the other weekend nurses came to fill in (thank God). Kevin was still awake when she got there. He was fussing so I put in a video for him. He would stare at it and then look at her and smile. He didn't even look at me when I told him 'good night'. As long as that video was on he was not interested in anything else. (Gee, that sounds a little bit like his father!)

I will update tomorrow after we get home - if I have a chance. If not, I'll do it on Monday morning. Wish us luck! Take care everyone and have a great weekend.

Tuesday, November 15, 2005 9:59 AM

We have made Kevin's next ECHO appt - it will be on Friday morning. We have to be at the hospital at 8am. His food gets cut off at 2am so he will be cranky. He can have pedialyte up to 6am, but that didn't seem to help him last time.

He is crabby from his flu shot. We've been giving him motrin when he needs it. Catching up on these shots is really going to be difficult for him. I feel horrible about it.

His cold doesn't seem to be getting any worse - so maybe he didn't have a cold at all. I'm worried that he may be getting a central line infection eventually though. He keeps ripping the site bandage off because it itches. He's sneaky about it and you don't know until after he's got it in his hands and he's playing with it. I clean it VERY well before I apply another bandage - but I'm not sure if that will work or not. We'll just have to wait and see what happens with that issue.

We sat him at the kitchen table with us for dinner last night and gave him some baby apple sauce. He fussed. He didn't want to be in his seat. He was tired and Chris layed him down. We let him sleep for about 20 minutes. The therapist had tried apple sauce earlier that day. I guess he was tired of it. We'll try again tonight. He definitely has an interest in food. He wants whatever you have. I saw that the nurse had canteloupe in the fridge today. I asked her to give him some of that today. Nina had bought one of the "food nets" that you put fruit in and the baby can suck on it without getting any chunks to choke on. I hope he does well. I'll try some grapes tonight. He's a stubborn little bugger though - it may take some time to get him used to it.

There was something else I wanted to tell you all and I can't remember. I thought about it last night and said - 'Oh, I need to remember to put that on his website' and now I can't remember! I need to start writing stuff down when I think of it.

Monday, November 14, 2005 11:52 AM

Boy, this weekend just flew by! First of all, we got a call from Dr. Ringel Friday night. He said he had a long conversation with Dr. Hanley and that Dr. Hanley was still confident that he could correct Kevin's pulonary arteries through surgery and he wants to proceed. He explained everything to Dr. Ringel (Dr. Skeptical). Dr. Ringel said that Dr. Hanley had the same question that Chris and I had...When does he need to go to CA? What we have to do now is go back to the hospital, not the clinic, to get him put to sleep so a new ECHO could be done and a blood gas can get drawn. If the acid in the blood is high or the oxygen in the blood is low, then we will be going to CA in early December and be squeezed into the schedule. If the blood gas is OK, then we will get on the schedule for the next surgery opening which is 2 months away. I have left a message for the person who is supposed to help me with the ECHO appt but I haven't heard back yet. I will let you all know when that is scheduled. Dr. Ringel also said that he is comfortable and confident that our outcome at Stanford will be good. That really surprised me. And it comforted me and Chris. So it was a good birthday for Kevin.

Saturday was his party! Just enough people came that could fit in the house. Not too many and not too few. Luckily it was a nice day outside also. Kevin wasn't quite himself that day - but he was still a little joy. Several people brought gifts for Gracie so she wouldn't feel left out. It worked. By the time we were ready to open Kevin's gifts she wasn't interested at all so Kevin had them all to himself. The things he loved the most were the cards and the wrapping paper! You couldn't keep it away from him. He got a couple stuffed animals (and he hugged every one and gave them kisses), some big boy clothes and jammies, some books that we have read at least 20 times each already (he's really good at turning the pages) and he received some Toys R Us gift cards. I'm going to see if there are any toys that the therapists recommend for him. I know they mentioned some toys that he needs to use his imagination for. His Nana got him a dump truck that he likes to push and put things into. It was an excellent day for Chris and I. We really appreciate everyone coming to celebrate Kevin with us. Thank you all so much!

People have also recently been helping Chris and I by helping to pay for Kevin's bills/medications and funding for our trip to CA. Chris and I are proud people, but we realize that we need the help since being removed from hospice and having to pay for many things that our insurance and Medicaid won't pay. Every penny that people have given us is going towards Kevin's costs. I have 2 hospital bills that are waiting to get paid and we are backed up all the way to last December for JHH with bills that hospice said they would pay but they haven't yet. I talked to Chris about us paying them ourselves at this point because we will be turned in to a credit company. (We have before for the same thing.) I have been trying to get hospice to follow through for a year but it isn't going anywhere. The money also helps for things like x-rays and blood draws at Hopkins clinics for Kevin. Our insurance won't pay and Medicaid won't either. We were supposed to get an x-ray the last time we were there and tried to get approval from the insurance company but they wouldn't budge. So, no x-ray has been done yet. I told Chris and we can get it done when we go for the next ECHO and just pay out of pocket this time. It adds up fast when you have to pay $100 here, $150 there, etc. Getting a "Kevin" bill at least every 2 days in the mail is not pleasant. Anyways, I just want everyone to know how much we appreciate the assistance.

This morning Kevin had to go for his 2 year check up with Dr. Uma and his flu shot. He did OK I guess. He didn't seem to care for Dr. Uma. When she had her hands on him for the exam he would try to push her hands off of him. He calmed down quickly after getting his shot. We spoke about catching up on his vaccinations. He should really have them before going to CA. We will have to take him in once a week for 2 shots per visit until he is caught up. I'm not sure how many he is behind - but I know it's more than 10. I think he is catching a cold too. He woke up with cruddy eyes and a runny nose. Hopefully it will pass quickly or not get any worse. That will probably decide when he can get this ECHO. If he gets congested then they probably won't put him to sleep and we'll have to wait until next week. I asked Dr. Uma if his lungs sounded OK and she said they were clear. I would hate to have to wait even longer - especially when there is a possibility that it is dangerous for him to have to wait. One day at a time I guess....

Take care everyone and thank you all so much!

Thursday, November 10, 2005 8:39 AM

I see from the guestbook that I didn't get the Mayor I wanted! Ah well.

I've been getting lots of e-mails and cards from people telling us they can't come on Saturday. Lots of people have the sniffles. I appreciate your thoughtfullness by staying away from Kevin, but I'm sorry you can't make it. I think I'm going to have lots of leftover cake!

We'll take pictures and get them posted. (I still haven't gotten the Halloween pictures developed yet!)

Chris and I are very excited about celebrating Kevin's birthday - his first one at home.

We'll have lots to do tomorrow to get ready so I won't be updating the site. Please call if you need directions (301) 424-3204. Hope to see you there!

Wednesday, November 9, 2005 6:44 AM

We all went out to vote last night. It took us longer to get Kevin out of the car than it took to vote. After we got him out - he needed to throw up in the middle of the street. Then the people handing out flyers that watched him gag and throw up threw a little pity party as we went by. As soon as we got inside everyone stared and all you heard was "awwww". The first person we came to said, "What happened to him?" I just said that he was sick. Then I told her our names so we could sign in. She seemed very concerned about Kevin. I didn't feel like going into all that. I wanted to vote and go home. Chris was talking to her about him. Then the next step was to get the voting card. That person felt bad for us too. We got to sit at the handicap booth and she pulled up a chair for Gracie. Gracie voted for me (is that legal?) I hoped she picked good ones - just kidding - I told her who to pick. She liked pressing the buttons on the screen. Then we all got stickers and Kevin waved by to everyone in the room. They seemed to get a kick out of him by the time we left. I don't like him having the kind of affect on people when they first see him. Everyone feels bad. I don't want people to feel bad. He's doing OK ya know?

So, we left and went home. It took 30 minutes from the time we left home to the time we walked back through the front door. It was no picnic. I don't know the results. The people we voted for better win after all that grief!

But Kevin liked getting out and about. So I guess it was worth it.

Tuesday, November 8, 2005 10:08 AM

I received Kevin's blood work results from his GI appt. His bili count is up to 49. He has been VERY yellow lately and that's why. He was increased on his Vitamin D in September because of his brittle bones. It hasn't made much difference in his blood results, he's still low and that will need to be increased again. There are 40 different components that were tested on Kevin with that blood draw. Only 9 of those are within the range that they should be. Then a few are lightly highlighted which means that they are abnormal and the rest are dark highlighted which means panic. Seriously - it says on the key at the bottom "dark highlight = panic". Dr. Schwarz only seems to be worried about the Vitamin D right now. Kevin seems to be feeling fine so we won't worry either. His liver labs have been pretty stable for a long time - they just seem to be getting a little worse now. Who knows, maybe they will be better next time.

I did want to let people know that if someone isn't feeling well or has the sniffles that they shouldn't come to the house on Saturday. (The doctor reminded me of that at our appt on Friday.) He doesn't want Kevin getting sick - none of us do. I know you all understand. Thanks everyone.

Monday, November 7, 2005 6:36 AM

Friday didn't go very smoothly. Kevin had to stop eating at 2:30am because he was going to be sedated for his ECHO. He cried the whole way to the hospital. The sun was in his eyes a lot too and that made him angry. We got there late because of downtown traffic and a couple of accidents. We waited about 30 minutes before we were called back. They tried to get a pulse ox reading on him and she couldn't get one. Kevin was irritated because she kept messing with his toes and fingers. I was getting frustrated because I told her what his reading was right before we left the house and that didn't seem to matter. We went over his current status with her and she left. She came back and said that he wouldn't be sedated because he was too high risk because of his liver. What? It's not like his liver was working before this appointment was made. Why did the doctor schedule for sedation then? So, we hooked our screaming child back up to his food. It was now 11am. We went to the room for the ECHO and he screamed through it. He didn't like being held down and he was really tired. I asked when we would be hearing the results (we didn't have a cadiology appt - only ECHO.) Dr. Ringel came in. I told him that we had one question: was Kevin stable enough to wait until January to go to CA or did we need to go in December. He said that Kevin looked good from many aspects. His pressure is still even in both sides of his heart, he is getting flow to both lungs, his sats aren't getting lower, he's growing and active but...he has a high acid level in his blood (from the blood taken last Friday at GI). That could be from his liver disease or his heart condition. If it's from his heart, it means that he isn't getting enough oxygen into his blood stream. Chris asked about hooking him up to oxygen but that wouldn't get the exygen into his blood so it won't help. The only way to tell was to get a blood gas. That is a blood draw taken directly from his artery. That wasn't going to work. By the time Kevin would have gotten his arm numbed and held down to get the blood taken he would be hysterical which would have given false results. So, Dr. Ringel said he wants us to go in early December. He is happy that we are going - but he said he is skeptical. (Like we haven't heard him say that before.) He wants to speak with Dr. Hanley about Kevin's last cath before we make any arrangements. He wants to make sure Dr. Hanley thoroughly reviewed the movie of Kevin's cath rather than just looking at the pictures. Dr. Ringel wants to make sure Dr. Hanley knows what he's getting in to. He doesn't want us going out there for nothing. We should hear from Dr. Ringel in about a week and then we can start the arrangements. Chris got upset about being away from home for Chrismas. And being away from Grace. We can have Christmas with her when we get back. Besides, I don't remember Christmas when I was 3 - she probably won't either. She'll be with her grandparents and at her own home. Who knows, maybe we can get back by then.

Julia and AnnaRuth were able to stop by to see Kevin on Friday. They took him for a little walk because he was fussy and ended up getting his EKG taken care of while we talked to the doctor. They hadn't seen Kevin since his last admission to JHH which was months ago.

On out way home the nursing company called. We didn't have a night nurse for the weekend. That company is so screwed up. It took about 13 phone calls to get the schedule straight. It was very frustating because we were dealing with 3 people there and they weren't talking to each other. Finally it got straightened out. So, after all that - nobody showed up to relieve the nurse at 6am Saturday morning! It wouldn't have been a big deal except that Chris was working and I needed to get Kevin's cake ordered and some party supplies. I called the company to let them know that I was frustrated by the entire ordeal. They didn't care. I eventually got it taken care of this weekend.

Kevin's diarrhea is still really bad. I changed him 3 times within 10 minutes yesterday. I hadn't even had a chance to get the diaper fastened before he pooped again. Last night I had his diaper off because he was getting ready for a dip in the sink. He nailed me. His hiney is holding up pretty well at the moment. No major rash and no bleeding.

We are all getting excited about his party this Saturday. I hope everyone has a chance to stop by to visit. Kevin can give you a raspberry and stick his finger up your nose (and then clap for himself when he's done). Remember, November 12th from 2:30-4:30pm. The address is 402 Grandin Avenue in Rockville. We are 1 block away from the Rockville Metro Station. Please call us if you need directions (301) 424-3204.

Thursday, November 3, 2005 12:19 PM

I don't know how it happened - but that boy has gotten so spoiled! And his temper is horrible!! If he wants you to stand and hold him - he will make it so you do. It's hard to hold a 26 pound chunk of baby for long periods of time. But if you don't do what he wants, then he will cry and cry until he throws up or he will gag himself. He was VERY tired last night and I put him to bed. He didn't like that. He screamed and screamed. I just walked out of the room and he was asleep within 5 minutes. But the problem is that you can't walk too far away and you have to keep and eye on him (without him seeing you), because he will rip at his feeding tube when he's angry. He's got attitude. His sister has plenty of that too. She got the Big Toys R Us book the other day and I had her look through it to keep her busy. She picked out 3 doll houses for Barbie. And she told me that she wanted all 3. I told her that Santa got her a doll house last year. She said, "But I want these now. And it's not up to you mommy, it's up to Santa!" Then when she was misbehaving later we told her that Santa doesn't give presents to kids that are bad. She said, "Well, Santa isn't here." Twit.

We go for the ECHO tomorrow. I sure do hope that he looks good enough that we can wait until January to go to CA. I would hate to be away for Christmas and have him in the hospital. This will be Kevin's first Thanksgiving at home. He's been in the hospital for the last 2. It'll be great. This will also be his first birthday at home. So many "firsts" this year.

I will try to update the site when we get home from Hopkins tomorrow. Take care.

Tuesday, November 1, 2005 6:29 AM

Halloween was fun for the kids. It was Kevin's first and we were excited. (Last Halloween he was in intensive care at JHH.) We had a hard time shoving Kevin into the cow outfit. He was adorable once we got him in it. Gracie was Cinderella. There was a police escorted parade for the kids in our neighborhood. It ended at the community park where they had pizza and drinks waiting for everyone. Then we took both kids trick-or-treating to a couple of key houses. Chris went home with Kevin to hand out candy and get Kevin more comfortable while Gracie and I moved on. I had a couple of comments about how polite she was. She wouldn't say "trick or treat" though. She would just walk up, knock and open her bag and smile at them. She thanked everyone for the candy.

After we got home she got out of her outfit and took off her stockings. Then she wanted to put the dress back on. Sure, no problem. She emptied out her candy and she and Kevin went through it. He had a blast. She was laying on the floor watching TV in her Cinderella dress. Picture this - the dress had a hoop in the skirt so when she was laying on her stomach, you could see her little hiney because the hoop kept the skirt from laying. I wish I had a camera available. Kevin was into the Tootsie Pop's. He and I shared a red one. He kept saying, "MMMMM" and smacking his lips together (it reminded me of a fish out of water.) He also said, "Boo" a couple of times. I had told Gracie that she could have 2 pieces of candy. I think she snuck more than that. Or maybe it was just all the excitement. Whatever it was - she was WIRED. She was up until 10pm. School should go really well today - NOT.

I have made Kevin's 2 year check up appointment with Dr. Uma for 11/14. He will also be getting his flu shot and catching up on some of his vaccinations. I'll give him Motrin before we go to ease some of the achiness from the shots. I made the appointment for after his birthday. I don't want him to be crabby for his birthday party or have any side affects from the shots. You never know what will happen with Kevin for something simple like this. He normally gets sick after going to her office anyways. He gets sick so easily.

Well, I've got to run. I will get the film developed so I can post the pictures of the kids in their costumes. Take care!

Monday, October 31, 2005 6:15 AM

Everything went OK at Dr. Schwarz's office on Friday. We got to meet AJ and his mommy. Kevin had just poopied all throughout his outfit and I asked Chris to go change him so I could keep talking to her. AJ is doing well and should be on his way to getting feeding therapy to get his feeding tube out. It's a long process - but it's great that he is getting so close. We'll get there one day. Unfortunately, I couldn't keep talking because after Chris got Kevin naked, Kevin started to eat the paper that was layed on the exam table and there was poop everywhere and Chris needed help. Kevin was enjoying himself - but Daddy was a bit frayed. Shortly after we got Kevin situated, we were called back. The nutritionist saw us first. Kevin is getting his calories cut yet again. He is now down to 22 calories per ounce. He has gone up to 26 pounds and it isn't good for his heart. Then we saw Dr. Schwarz. I told her about swelling that he has been having in his face. So she increased one of his meds to see if that helps. She also took him off the oral Vitamin K since he now gets it once a month through IV. She asked about getting the IV line taken out. I told her that we were planning on it, but since we will be going to Stanford, that we will hold off. I said something to her about us being excited and that now we have hope. I was a bit taken back when she shook her head no and sighed. Like it wasn't the right thing to do. Or that we shouldn't get our hopes up. I didn't say anything - I ignored it. Chris did too. It's been bothering us though. But you know what? It's not her kid. And she's been wrong about him so far. It isn't like her to do something like that. But it makes you doubt yourself. But we won't. I think about AJ and how he could stand and even walk on his own. It gives me hope that Kevin can get to that point one day.

Afterwards, Kevin needed to get some blood work done. It couldn't come from his central line this time so he had to get stuck. He did REALLY well. The girl that took his blood did a great job. I guess it helped Kevin that there were about 6 ladies hovered around him telling him how cute he was and it took his attention off of the needle stick. Then we got to go home. Dr. Schwarz wants us back in 2 months unless we get scheduled to go to CA before then. If so, she wants us to get squeezed in before we go.

The weekend went fine. It got cooler so I started to put Kevin in the PJ's with the footies in them. They don't fit! The Carter's jammies that we went to Hagerstown for don't fit!! I couldn't snap up the thigh. So I left him like that. It was his sexy look.

Oh, he also has a new thing...he learned how to put his finger up MY nose. It took me by surprise. He got a kick out of it though. Then he got angry when I would keep his hand away from my nose. Then he smacked me in the head! Can you believe that? Terrible two's I guess.

Gracie helped give him a tubby last night. She washed his hair and his body. She wants to be included and I don't blame her. It's hard to get one on one time with her. You always have to watch Kevin. She's really into playing Barbie's. We got to play last night but we were on the floor with Kevin in between my legs. We used his feeding tube to play Barbie jump rope. He grabbed Gracie's Barbie out of her hands and started to hug it. It was so cute. Then he kissed her. He doesn't do real kisses yet. He just puts things to his mouth and thinks that's a kiss. He's doing better with peek-a-boo too. He only covers one eye though. Before he was smacking himself in the head. He was way off.

I'll get plenty of pictures for Halloween. Gracie is going to be Cinderella (she was Tinkerbell at her school), and Kevin is going to be a cow. I hope you all have a great Halloween too! Take care.

Thursday, October 27, 2005 6:42 AM

When I got home yesterday Kevin's face was swollen. His breathing was fast. His poop is bright yellow and liquidy and he's sleeping more than usual. I really don't think that the Vit K could have that affect so long after it was given. But what do I know? We have an appointment tomorrow, but I will e-mail Mary Kay just to run it by her.

I can't remember if I wrote about this part yet or not - so bare with me...We got approval from the insurance company for Kevin's cath at Stanford. Problem - it has to be before November 30th. There are no openings by then. Also, they didn't give approval for the heart surgery - yet. They said that I had to wait to get approval after the cath. They said that they needed a report from the doctor stating the results of the cath and letting them know that he needed the surgery. I understand - but then again, I don't. Why do they think we are doing this? We wouldn't be putting Kevin through this just for the hell of it. If he doesn't get that surgery - he will die. It's the same as it has been since he was born. So, I have to get approval again for the cath for a date after November 30th and then, once we get out to CA and get the cath, we have to get approval for the surgery. I don't want to go back and forth. We aren't sure if we have to go in December or if he can wait until January. The ECHO next week will give us more info on that. If he can wait until January, I can't get approval for the cath until late December because my insurance coverage contract ends at the end of the year and I have to wait until that is renewed. They won't approve anything for after December 31. I guess it doesn't matter to them that I have been using their same insurance company for the last 15 years. It's just more red tape. If I can't get the approval until late December, I'm not sure how quickly we can get to CA afterwards. The tickets will probably be more expensive if we wait to get them too close to the travel date. I have to stop worrying about it...

Well, I need to go send a note to Mary Kay so she can tell me that Kevin is alright and I don't need to worry.

Take care.

Tuesday, October 25, 2005 6:56 AM

Sorry I haven't written. Kevin is fine. We had an issue yesterday though. Kevin is now getting his Vitamin K once a month through his IV line, in addition to getting it twice a day through his feeding tube. Well, the nurse (who does this for a living) came by in the morning to give it to him. She called and left me a message later on stating that she gave him double the dose by mistake. I thought, "It's a vitamin. It can't be too bad." It can. She called the GI doctor on call at JHH. He instructed her to stay there and monitor his heart rate, breathing, pulse ox and to watch for swelling for 1 hour and to see if he slept more than usual. Kevin was doing OK. He told the nurse to go back in 4 hours to check his vitals again. The nurse was very sorry. We get that a lot - they're sorry. People make mistakes - but gosh - they seem to come often with Kevin. That poor baby. We spoke to the doctor last night because I wanted to verify that I shouldn't give him his regular doses of Vitamin K and for how long. At least 1 week. He said he would speak with Dr. Schwarz today and have her or Mary Kay call me. He'll be fine.

Chris was asking me the other day if I ever got upset that Kevin isn't where he should be at his age. He isn't doing the things other 2 year olds can do. I think about it sometimes - but it's rare. I told him that I know Kevin will catch up eventually. But I do think about the fact that Kevin is still an infant. It's hard to have a baby - but eventually they grow and you get a little freedom. We aren't getting that with Kevin. Well, my motto since Kevin was born is "it could always be worse." I think people get tired of me telling them that when they start to complain to me. But it's true. Anyways, a show came on that night and there was a little girl who wouldn't grow. She's the size of a 9 month old and she's 12 years old. She also has the mental capacity of a 9 month old. Nobody knows what's wrong with her, how this happened or what her outcome will be. But it put things into perspective for me. It could be worse for us. Hopefully Kevin will make more progress after this next surgery. AJ's mom said that he did much better afterwards. We're very pleased with all of the progress Kevin has made so far.

I got the response from our insurance about paying for Kevin's surgery. They won't authorize the surgery yet. They authorized that cath - if it's done before November 30th. Sigh...now I have to send another memo asking for an extension. I spoke to them and they said that once the cath is done - then I have to send another memo asking for approval for the surgery. So we'll have to do that while we are in CA. We aren't going to run back and forth just to obtain approval for the surgery. We can't afford to run back and forth. We should be able to pull it together while we are out there.

One last thing - Chris and I would like to invite everyone to come to our home for Kevin's birthday. We will be having cake and ice cream from 2:30-4:30pm on November 12th (Saturday). If you just want to pop by to see him for a minute or stay the entire time - everyone is welcome. It may get crowded though...We wanted to give everyone the opportunity to come if they wanted to. I will post this again because not everyone sees his page every day. We hope you can come.

Take care everyone!!

Wednesday, October 19, 2005 6:45 AM

Everybody is doing well. The nurse tells me that he plays well during the day is is awake the majority of the day. He only has one more day of antibiotics. I was looking forward to getting that central line out, but if he will be going to CA for surgery, then we have to leave it in. One day he will be able to sit in a real bathtub and enjoy a real bath. That poor kid has been in the kitchen sink forever!

I have been trying to teach him peek-a-boo. His aim is off. He keeps whacking himself in the forehead. Pretty hard too. It doesn't help that I laugh because it makes him do it more.

No news about CA yet. I haven't heard back from the insurance company if they will pay for his surgery out there or not. I sent an e-mail to CA asking about openings for January and explaining that we would like to wait if he is stable enough. But I haven't heard back yet. I did hear from the cardiology social worker at JHH and she said she will give us the referral we need for the Ronald McDonals House out there. She also mentioned something about COTA (Children's Organ Transplant Association). They help with fundraising. She called them and Kevin is eligible since the heart surgery will hopefully lead to a liver transplant. I haven't looked in to it too much. I checked out their website and looked at a bunch of kids that need money for all kinds of transplants. I got depressed and closed it. I'm a ninny.

But all in all, we are doing just fine. Take care everyone!

Saturday, October 15, 2005 9:34 AM

I just found out that we can't go to CA in November because Dr. Hanley is booked full for surgeries for that month. They said we can come in December. I'm not thrilled with the idea of being out there and away from Grace for Christmas. I made an appointment for an ECHO for Kevin on 11/4 so we will see how that goes. If they feel that Kevin can wait until Janurary, Chris and I will go out to CA then. Plus the airline rates will be a lot cheaper after Christmas.

I received one of Kevin's medication refills yesterday. The bill was $316. Yes, that is for ONE medication. That's not our portion though. I only have to pay $35. I spoke to the pharmacy and they are going to give me more medication in each bottle for the meds that have a longer shelf life. That way I won't have to get them every 2 weeks. I can get them once a month or 2 months. That will save us a lot of money. But unfortunately, some only last a couple of weeks before they start to turn color and go bad. They also said they will try to bill Medicaid. I've already been told by the State that Medicaid won't pay for it - but I'm going to let the pharmacy try and see what happens. You never know.

So, maybe things will work out and won't be as bad as we were originally told. I guess we'll just have to take it one day at a time and see what comes our way.

Oh, and I did get the letter from JHH for our insurance company already. I faxed it yesterday afternoon. Dr. Ringel just used the letter I wrote and put it on his letterhead. No problem. And no fees!

Friday, October 14, 2005 6:14 AM

I spoke to Peggy at Dr. Uma's office yesterday morning. She said that Dr. Uma started charging for these things because other doctors do. Not my doctor. Maybe I'm lucky. Anyways, I told her not to send the letter because I wasn't going to pay for it. She said she would send me the bill for the other $10 for the previous letter they did. She said, "If you pay it, you pay it." I told her that I would send cash through the mail and I hope she gets it. :) She also told me that they received 2 separate letters from our health insurance company about his standing referrals. One for GI and one for cardiology. I only got the cardiology one. So she faxed them to me. I'm glad she is there to listen to me complain about her boss!

Last night Chris told me that there was a low battery alarm going off on the carbon monixide monitor around 2am. He went down to check it. Guess who was in the living room? Asleep in the recliner? The nurse. She wasn't even in the same room as Kevin. I was quite annoyed when he told me. He said he had never seen her move that fast as when she got up out of the chair and went back in to the den. Chris said that he was going to speak with her because if I did, then she would quit. So, he approached her last night. He said that we needed to have an "awake and alert caregiver" for Kevin and that she needs to try to stay awake. He also mentioned that she isn't moving fast enough when he throws up. (He gives signs that he is going to be sick and she just sits there.) Yesterday morning she didn't move and Kevin threw up all over himself laying down. He could inhale that and catch pneumonia. She didn't even change his clothes afterwards. Anyways, she told Chris that her feet were swollen and hurt so she had to prop them up. (OK, but you were SLEEPING too!). So, she has the ottoman back. I'm sure she will still sleep - but at least she will stay in the same darn room. I think we need to find someone else. She still has 2 months of her pregnancy left and she's tired. I know she cares about Kevin - but she just isn't cutting it right now and it's just going to get worse. She said that she would try. I sure hope she does...

Kevin is a jolly little guy since his release from the hospital. I think I forgot to tell you all that his is off of his methadone - finally! His last day was 10/3. He's been just fine. He also had his first sip of beer the other day and licked a Dorito. He was pointing to the beer and grunting. So a little bit was sitting in the lip of it and he really liked it. And he licked the dorito clean.

Well, I have to run. I hope you all have a great weekend!

Thursday, October 13, 2005 6:45 AM

Kevin had physical therapy yesterday. They are pleased with the way he is jumping in the new bouncy thing that Nina got for him. He really likes it. He is putting weight on his legs when he's in it. The problem is, when you take him out and try to get him to stand he freaks out. He won't put his legs down. I wasn't there but I've experienced it. He just won't do it and screams bloody murder if you make him try. Then you get tired of holding him up and just sit him down. He also said "book" and "ball" for them yesterday. Nina said it was clear as day. I couldn't get him to say it for me last night. He threw up on me instead.

I got Gracie in to bed at a decent time - but she wouldn't go to sleep. She's tired - but she stays awake until me or her father comes upstairs. She absolutley had to wear a bracelet that Dawn got her to go with the Cinderella dress. HAD to have it on. I told her it would get tangled in her hair in the middle of the night. It didn't. It got stuck in mine....while it was still attached to her arm....at 3am.

Then I stayed awake because I was still fuming about another Dr. Uma incident. I need to get approval for Kevin to be covered out of network in order for them to pay for his treatment at Stanford. I wrote a letter for her to sign. SHE didn't write it, I did. I got a message from her receptionist, Peggy, stating that Dr. Uma made a small change to it and that she was charging me $10. Huh? FOR WHAT? She also said that I owed $10 from a short memo I requested (that Peggy wrote) asking my insurance company for a 6 month standing referral for Kevin so I didn't have to keep going to Dr. Uma since she's been giving me a bit of a hard time with obtaining referrals recently. Which, by the way, I did receive approval for just yesterday. But only for Cardiology, not GI, and only for 2 months. That wasn't worth $10. It's only for 2 months because my insurance contract expires at the end of the year. I'm not going to Uma for another letter. I'll just fax that same one over again at the beginning of the year and see if I can get 6 months starting in Janurary. So, I'm waiting for her office to open this morning so I can call Peggy and tell her not to send that letter to my insurance company. I forwarded it to JHH to have them amend it and fax it for FREE. We have to figure out how to pay for a 3-4 weeks stay in California, still pay our bills here, pay the extra $800+ a month in medication costs and Chris doesn't have paid leave for the time he will be off. And this woman is trying to nickle and dime me to death! Mom said yesterday that God will make it all even. I guess what goes around, comes around heh? I sure hope so.

But, other than that - things are just peachy.

Tuesday, October 11, 2005 1:31 PM

I had to leave that entry up for a while because some people only check every few days or a week so I wanted to make sure everyone got to see it. Chris and I are so excited. We are going to try for early November to schedule the cath. It would be on a Monday and then his results would be reviewed on Wednesday. Then we would meet with Dr. Hanley about the surgical plan and to see if we wanted to proceed. Then the surgery would be scheduled for the following week. We would probably be out there for 3-4 weeks. It depends on how Kevin's recouperation goes. Let's hope he doesn't pull that pesky cardiac arrest stunt again. So, if all goes according to plan, Kevin will be in the hospital for his 2nd birthday. The same as his first. But we can't wait too long. As Kevin is getting bigger, it is starting to affect his breathing because he is compensating. We don't know how big he can get before the stents are no longer able to do their job. We are running out of time.

We had a good weekend. Our friend Traci came over to visit and ended up putting Kevin to sleep. So then she helped me bring furniture down into the den to make it in to Kevin's room. It is all done and he spent his first night in his new room on Saturday night. He did just fine. It's quite cozy in there.

Sunday, our friend Dawn, who is visiting from Missouri, stopped by. She brought a Cinderella outfit for Gracie. She immediately stripped to put it on. She gave Kevin a toy with a little microphone that Gracie took over. But he gets to play with it. He has learned from watching Gracie how to put his mouth to the microphone and talk in to it. It's pretty comical. I was excited that he caught on so fast.

Last night Kevin's tube came out twice. That poor kid. His butt is also back to being red and raw. It's the nurses. That's all there is to it. If I can have his hiney stay clear for the 4 days we were in the hospital, then they can too. They just need to change him more often. I think that if I tell them that I want it changed more and I will check the amount of diapers, then they might just waste diapers and ball up clean ones just to make it look like they are changing him more often. It's horrible to have to think that - but I don't trust that they wouldn't be that sneaky. The nurse last night went upstairs to get an ottoman so she could use it in the new room. She did it so she could prop up her feet and lay down. It's not very comfortable to sleep sitting upright. God forbid she stay awake like she's supposed to. Grumble...

That's about it. I will let you know once I get a date set for Kevin. I still have to get our insurance company to pay for the surgery.

Thursday, October 6, 2005 7:55 AM

Kevin is home and doing very well. He will be on IV antibiotics for at least 2 weeks. We need to re-schedule his ECHO so they can check to see if there is anything growing in his heart (Endocarditis). If he has that, then he will need at least 6 weeks of antibiotics.

Getting out of Shady Grove was a bit of a pain last night. Since he is no longer on hospice care things aren't going smoothly - at all. We are paying for his medications now. We will be having a Montgomery County nurse coming to monitor him once a week that I haven't even met yet. We are responsible for the home monitoring equipment and spare oxygen bills. And, this is the kicker...I was told that we couldn't be released on IV antibiotics until the IV Infusion company found a nurse to come and show me how to take care of his central line and give the antibiotics. What?? I spoke to the company and told them that I am familiar with the process and have been doing it for over a year. They said that it didn't matter and that hospice used to do that. No they didn't! I told them that we were not keeping Kevin in the hospital for that reason and we were going home. They didn't have a choice. So, we left. They have found a nurse and she will be going to the house once a week while Kevin is on his antibiotics. I spoke to her this morning and she said that she is OK with not giving me training. She will also be taking some blood from Kevin for testing while he is on the antibiotics. That's fine. I'm glad they have agreed that I don't need to have training on how to administer his antibiotics. I can't take off time from work for something like that. It would be a waste of time for everyone involved.

We are glad to be home. I slept like a log last night. The nurses at the hospital didn't even change 1 diaper for me while we were there. I changed his diaper at least 15 times each night. Then he threw up his feeding tube at 1:30am yesterday morning. Plus, they would come to check his vitals every 2 hours and would wake him up. He would get furious and they would leave and I had to get him back to sleep an hour later! I told them that they couldn't check his temp or blood pressure in the middle of the night any longer. It wasn't necessary. And I was tired darnit!

I have some news....we have heard back from Dr. Hanley at Lucille Packard Children's Hospital. Here is the letter:

October 3, 2005

Mr. & Mrs. McLane
Email: KMCLANE@niaid.nih.gov


Dear Mr. & Mrs. McLane

Thank you for providing the clinical information and available studies on your son, Kevin. I’ve also received a letter from Dr. Luca Vricella who was part of the management team for Kevin at Hopkins.

Kevin’s condition is obviously quite complex, however, I do believe there is a way to move forward with him which will potentially improve his cardiovascular status. This was the consensus of our multi-disciplinary group that meets weekly to evaluate complex cases similar to Kevin’s. I can tell you that I have personally operated on half a dozen patients with Kevin’s cardiovascular condition and with biliary atresia. At the current time, Kevin’s liver status appears to be stable with no direct intervention needed. On the other hand, his cardiovascular status is of more immediate concern. The pulmonary arteries show evidence of ongoing obstruction, most severely in the left pulmonary artery at and just beyond the existing stent. On the right side, there is also some obstruction at the level of the stent and it is not completely clear whether there is further obstruction beyond this point.

It is the consensus of our group that Kevin may well benefit from further surgical intervention. Prior to rendering a specific surgical recommendation, I would like Kevin to undergo a new cardiac catheterization. It would be preferable to have this performed here by our interventional cardiologists who have a very large experience with obtaining the full set of needed data for these patients, based on over 320 surgical patients that I’ve operated on with this condition.

Therefore, my specific recommendation would be that Kevin undergo cardiac catheterization here at Stanford. Following this we will evaluate the new data and formulate a specific surgical plan. I cannot tell you with any certainty at this point whether full repair of the pulmonary arteries including closure of the ventricular septal defect would be possible. This certainly would be the long term goal, however, there is not enough information at present to be able to make this prediction. Even if VSD closure is not possible, stabilization of his pulmonary arteries by relief of the existing blockages with redistribution and normalization of blood flow to both lungs would improve his quality of life substantially and reduce risk should any procedures be necessary for his liver problem.

If I can be of any further assistance regarding Kevin, please contact my office and we can discuss the recommendations that I have proposed.

Sincerely,



Frank L. Hanley, M.D.

FLH:mc

CAN YOU BELIEVE IT??? I started to cry when I read it this morning. Then I called Chris at work and he started to cry. Are you crying too? It's a lot to think about. So much has to be arranged. I'm going to ask AJ's mom to help me by giving me some pointers since she's been there for AJ. She is the person who told us about Dr. Hanley. Thank you so much Melanie!! You're an angel!!

We don't know what the outcome will be for Kevin - but this is better than doing nothing at all. Even if this improves his quality of life and gives him some extra time with us - then it is all worth it! I'm so excited! We still have hope. We never gave up and I think that really helped. God is answering our prayers! (But He hasn't grown that money tree in the backyard that I asked for. What's up with that God? Maybe in the Spring.)

Take care everyone!

Love,

The happiest mommy in the world

Monday, October 3, 2005 1:34 PM

Things are going OK here at the hospital. The check in through the ER really sucked. First off, the triage nurse almost got a fat lip because she was insulting, condescending and rather rude. Chris was pretty upset with her too. I got a little smart with her and I think she got the point. Then we were in the ER for over 5 hours - for nothing. No antibiotics were given. The doctor only even stopped in twice to see us. We had a visitor while we were there though. A doctor from NIH that I used to work with. He was on the peds ward and saw Kevin's name. He got us a private room in the back where it is nice and quiet. We spoke about sending Kevin's information to Lucille Packard Children's Hospital and he said that was the place to go for cardiac issues. He said they are number one in the nation. If we get a negative from them - then we're screwed. I still haven't heard back. I had sent an e-mail to the secretary and she didn't get back to me yet. We'll just keep our fingers crossed.

As for Kevin's condition here - he has 2 different bacteria in his blood. One type from his central line and another type from a peripheral stick. The doctor told me this morning that they were going to remove his central line and put in a peripheral IV. I said, "No you're not." I'm sorry, but you can't look at his chart and make a decision like that without speaking to me first. I explained the reason why we needed to keep it in and that I would have it removed after the infection is treated. There is no way that Kevin can keep a regular IV line in his skin for longer than 2 days. Plus I don't want us to be here that long. Get the dosing right and let us go home on antibiotics. Once the doctor understands that I know what I'm doing and what I'm talking about (and that I won't budge), things will go a little better. I think she is already getting where I'm coming from.

What we have to do now is get cultures done every day until they are negative. Then we can go home. So I have no idea when that will be. Could be tomorrow. Could be next week. I just pray it goes fast. I called hospice and left a message and she called me this morning. We have been removed from Hospice care as of Friday afternoon. We are now in the hands of the County. It's like starting all over again. More stress. But we'll get used to it.

Chris is off work tomorrow to stay with Kevin so I can go to work. Then I'll be back here for the night. Yipee - another 3 hours of sleep.

Oh, we also got rid of the weekend nurse. Sunday was the last straw for Chris and I. We had to take Kevin to the hospital and she stalled for time. Then we noticed that she signed out for 2pm when she actually left before noon. She had no right to do that. I told the company and they agreed. Keivn didn't like her anyways. It wasn't any help to us to have someone that made him cry all the time and we didn't trust to leave alone with him.

I've got to run now. I am in the hospital playroom while Kevin's Aunt Theresa is singing songs to him. She came for a short visit. Kevin needs to go get his blood drawn for a culture anyways. We know he is in your prayers. Thanks so much.

Take care.

Sunday, October 2, 2005 8:58 AM

The hospital called last night at 11:30pm. The doctor said that Kevin's blood culture came back positive and he needed to be admitted for treatment. I asked which culture it was and she said his blood culture. Duh, you took 2, one from his central line and one directly from the vein, which one was it? It is his central line. So, I will be contacting JHH to get it removed after this round of antibiotics. She said that she would call JHH to let them know we were coming. I said, "No, I'm not taking him there. There is no reason why you all can't treat a central line infection." She said, "OK, but he will need to be here for a couple of weeks." I said, "No he doesn't. You get him started and get the levels right and then we will take him home on antibiotics. We can do the IV therapy at home." She said, "Oh, well it's not normally done that way." I said, "Well, Kevin isn't the normal kid. We've done this before and we know what we are doing." She said, "OK, then I'll see you soon." Huh? I wasn't going in at midnight. Kevin is acting totally fine. I told her we would be in sometime in the morning. So, we are getting ready to leave. I guess his fever didn't come back because of the dose of antibiotics that Dr. Schwarz requested before we were discharged on Thursday night. So it will have come back eventually.

Kevin has his ECHO on Thursday and I'm not sure about that now. I will contact Cardiology tomorrow. I guess it depends on how long we are in the hospital. I hope they get things straight quickly so we can get discharged by Wednesday. I don't feel right about being off work all that time so Chris is going to see if he can take off on Tuesday to stay with Kevin. Shady Grove isn't the same at Hopkins - we can't leave him there unattended. They aren't in the room as much as at JHH. We need to be there to take care of him. I'll be sleeping there at night. Gracie will sleep at Gan and Pop's house since Chris gets up so early for work. Gracie is catching a cold now too. I've got to go get her some medicine and help her blow her nose. I'll have someone write in to let you know how we are doing. Take care.

Saturday, October 1, 2005 8:38 AM

Kevin's evening went fine. Judy helped with a tubby and then she took Gracie for a little while. I took Kevin down to Gan and Pop's house and he was very well behaved. He sang with Gan and got in to some marbles. That was a bit of a mess to clean up. His night was better than the past ones and he hasn't had a fever. He still had diarrhea. The nurse is here today and I will be talking with her about her interaction with Kevin. Hopefully she will understand and step up to the plate. If not, I do a better job watching him myself. I just won't get any laundry done ever again.

I'll let you know how it goes....

Friday, September 30, 2005 9:47 AM

I took Kevin to the local ER yesterday. His fever was over 103 at 4am Thursday morning and he was shaky. He had blood drawn from his central line and from a peripheral stick to test for bacteria in his blood and the line itself. They also did a urine cath. His white blood cell count was normal which means that he didn't have an infection. We will wait to see if anything grows on the cultures. They called Dr. Schwarz and she said as long as I was comfortable, that he could go home. But she wanted him to get a dose of antibiotics first just in case. It seemed like forever before we finally got discharged. Kevin and I didn't get home until after 7:30pm. He slept in the hospital for a whole 30 minutes. Not much of a break for me. At least he wasn't as miserable as he has been in the past. We read books and watched Boobah's (YUCK!). He ate a little piece of a book and I shoved my fingers in his mouth trying to get it out. So he bit me. Hard.

His night was better last night. When we were discharged his fever was still over 101. He's whiney and his butt is open and bleeding from the diarrhea. It actually drips blood after you remove the diaper. We put the Ilex on, but he is going so often that it isn't helping much. I dunno. It's so stressful having him not feeling well. I feel so bad for him. I hope this passes soon - very soon.

Wednesday, September 28, 2005 6:49 AM

Kevin's night was a little better last night. He's been having the fevers at fussy. He's OK during the day and early evening. I'm going to e-mail GI and Cardiology to see if they want any blood work done. His fevers break with Motrin and they are only at night. Chris and I tried to look in his mouth with a flashlight last night. That didn't go well. Kevin was pissed. So we couldn't see if he was getting more teeth. He has also been grinding his teeth. (I can't stand that sound.) Hospice and County were over yesterday. The county nurse said he heard something in his lungs - but the hospice nurse didn't. I have to rely on them because I can't listen to his chest and know what sounds right or wrong. By the way, he will be coming off of hospice within the next week or so. I haven't heard about the new person taking over his case or what the company is called. I know they are affiliated with a local hospital. But I was thinking last night that if he is starting to go down hill, then he shouldn't be switched. I'm confused. So is Chris. We don't know what's happening with Kevin right now. It could be an elevated bili count that is making him not feel well, an infection of some kind, him outgrowing his pulmonary arteries...lots of things. And all of these things have different ways of being handled. I don't know what direction to do in. He has his ECHO next week so maybe that will give us some info. I believe the other hospital is supposed to be reviewing his case today. I pray we hear good news from that. The stress is affecting my blood pressure. I went to the doctor yesterday and she was concerned by it. She asked if I was under stress. Do you think maybe just a tad? I have to go to my regular doctor for some testing. Yep, that's all I need. To take more time off of work to get all this taken care of. Now I'm stressed more! Being fat isn't helping me either. Can someone please call Oprah and have her send me her chef for a year?

Tuesday, September 27, 2005 6:34 AM

It wasn't a very good night for Kevin. He didn't sleep well. He cried a lot. I got up at 3:30am and went down and picked him up and he stopped. The nurse wouldn't get off her butt to hold him. Gee, it sounds like a pattern here. I disconnected his food and walked him into the kitchen and he was fine. After about 10 minutes I layed him down and he went to sleep. He was awake again about 30 minutes later - and she still didn't pick him up. She was frustrated with him (probably because he wouldn't let her sleep). Then the morning nurse showed up late so she didn't get to leave until almost 7am. Oh well. Now she knows how I feel when she is late. Actually, she probably won't even catch on to that. He had a fever this morning, but he is acting just fine. He was whiney when I came down, but I held him and he was smiling. I think he'll be fine today. He was doing good yesterday afternoon and evening for me too. He was playful and wasn't sleepy. He skipped his late afternoon nap but stayed happy. At one point he was trying to get his thumb up his nose. That was kinda funny.

I'm running late today so I have to cut it short. Take care!

Monday, September 26, 2005 6:32 AM

We had a great time on Thursday and Friday. We stopped at the wildlife preserve/zoo on the way up and Gracie had lots of fun. She kept telling the animals that she loved them. They say that the tigers and bears are dangerous...I think they need to put signs out for the big black swans and those ducks and geese! At one point we had about 30 ducks chasing us down the walkway. After we left there we took a ride over the mountain to Hagerstown. We checked in to the hotel and then went to the outlet mall. I got Kevin some jammies that zip all the way down and that won't be too hot for him. They had some other really cute ones, but the fleece was too thick. I got one thing for him that goes over his head. It is a little longsleeve thermal onsie with a cute teddy bear on the front. We didn't go to too many stores there - maybe 3. After that, Gracie wanted to get to the pool at the hotel. We stopped at McDonald's because she was too tired to sit and behave at a restaurant. We ate on the beds in our room and then we went to the pool. The chemicals were really strong. Gracie and her dad had lots of fun. I went back to the room and got a warm bath ready for her. I had checked on Nina and Kevin and everything was fine. After all the excitement of the day - she still stayed awake until 10pm. Chris and I were beat. And of course, I couldn't sleep. I wasn't worried about Kevin - it just wasn't home. The next morning we had breakfast and went to a park for Gracie. They were closed. So we decided to take her to the Crystal Grottoes since it wasn't too far down the road. She liked it - at first. She got cold and wanted to leave. Chris was really enjoying the cave and asking lots of questions. I thought it was creepy down there. After that, we headed home. We stopped at a Burger King with a play set outside so Gracie could play a little bit more. We got home around 2:30pm.

The next day we had a nurse until we went to Chris' company picnic. I'm not so sure that we will keep this lady. Kevin still doesn't like her and she doesn't interact with him much. Kevin woke up around 11:30am and we got ready to go to the picnic. We had to pack lots of stuff for him. We put "big boy" clothes on him since it was cool out. A real (over the head) T-shirt and some pants. The shirt ended up being a pain because it kept riding up on him. But I don't want to use the kind that snap at the crotch because he has too many poo accidents and I would have to change his shirt and pants. (Like the one he had at the picnic.) So, I'll just deal with it and shut up about that. We got to the picnic and he got to see lots of people that have heard of Kevin, pray for him and visit his website. I'm glad they finally got to meet him in person. It's too bad that he wasn't really giving out any smiles for them. He gave out just a couple. We were in line waiting to get Gracie a balloon and one little girl tried to pull the tube out of his nose. Then a little girl with boogies hanging out of her nose walked up to him...it was time to walk away. The balloon lady had cut the line off anyways and wouldn't make us one. Gracie was a wee bit upset. So we went to play games. I felt bad because I told her there would be a moon bounce - but they didn't have one this year. We all had a good time and we are glad we went. Kevin was really well behaved. Can you believe that he didn't fall asleep on the way home? Not even after we got home. He was up for almost 10 hours straight!

The nurse for that night didn't show up until 11:30pm. I was so tired. She was due to get off the next day at 6am, but we didn't have another nurse coming. So I asked her to stay until 7am. She was reluctant - but she did. I didn't sleep well that night either.

Sunday we were supposed to have AJ and his mommy and big sister come for a visit. His mom called yesterday morning to tell me that her kids both had colds so they couldn't come. I appreciated the forthought. Gracie had woken up that morning asking what day it was. I told her it was Sunday and she said, "Today AJ and Jordan come over to play with me!" She was bummed that they couldn't come. She didn't belive me at first so AJ's mom told her herself on the phone. Gracie believed her. We talked for a little while and got to fill each other in on some of our experiences. We'll get together another day.

So Gracie and I went to Target and then we went to the park with Kevin after we got home. Nina stopped by. She brought over Kevin's birthday/Christmas/Graduation/Marriage gift. It was a bouncy seat that you don't have to hang in the doorway. He is getting too tall for his saucer and we can't have him hooked up to his food when he is in the other bouncy seat because he twists too much. He didn't know what to think about it at first - but then he got the hang of it and enjoyed himself. Then he pooped and it went down his leg, into his socks and on to the carpet. It was time to get out. I don't know where his diarrhea came from. It was pretty bad yesterday but he was fine last night. I made his food with Pedialyte instead of water.

After Nina left, Gracie was so tired. I thought we could get her to bed at a normal time. I had her in bed watching a movie and she came down about 8:30. She's slick. She said, "Mommy, I heard you calling me." I told her that I didn't call her and she said, "Oh, maybe it was Daddy. Where is he?" He was in the den. So she went in there and started to play with some toys. I had told her to go back upstairs and she conveniently ignored me. She went back up with me and got a bloody nose in our bed. She freaked out a bit. It's hard to stop a bloody nose when the kid won't lay down or tilt their head back! She got over it and we went back in to her room. She was asleep within 5 minutes. And so was I.

It was a good 4 days off. I'm glad we were able to get away. But it's good to be home and back to normal.

Thursday, September 22, 2005 8:33 AM

We are just about ready to go. Kevin is upstairs having a fit. He had a fever of 100 degrees last night, but it went away with Motrin. Nina said that he might be getting his 2 year molars. I haven't checked inside his mouth to see what it looks like yet. Gracie is very excited about going to the zoo and staying at a hotel with a pool.

I have to change the tape for Kevin's NG tube before we leave. I sure hope nothing happens to it while we are gone. But at lease we will only be an hour away so I can come home if needed. (But I won't need to.)

I'll let you know how our little trip goes and how Kevin did after we get back.

Talk to you soon!

Wednesday, September 21, 2005 6:51 AM

Kevin has a fever this morning. It read about 99 - but he feels a whole lot hotter than that. I told Abi to give him Motrin and I would call her later to check on him. I don't understand why he is getting these fevers. This is the 3rd one in a week. I wonder if it is connected to us weaning him off the methadone. It's such a small amount though...He doesn't seem to be having any problems with the weaning (personality wise). Other than that, he's doing OK. His bottom is still having issues, but it is nowhere as bad as it used to be. I bought more ILEX cream. The problem is that if there isn't enough petroleum jelly put over top of it, then the diaper sticks. I think the nurses are just ripping the diaper off and it pulls his skin and makes him bleed. His little doo-dads were bleeding the other day because of the diaper sticking.

Gracie got to bed a little smoother last night. We went to the park and then came home for a bath. She wanted strawberry shampoo and grape conditioner. Every time I rolled over last night my stomach would growl because I would smell her grape hair. And, yes, she still hates me.

We are going to have company on Sunday. AJ and his mom and big sister are going to come over to meet us. It will be nice to talk to someone who understands what we are going through.

We are all set for going away tomorrow morning. I'm getting a little nervous. I'm not worried that Kevin won't be taken care of (because Nina will have him). I'm worried that his tube will come out and I won't be there. I'll just make sure I tape it up really well before we go. Really, really well. But if this fever doesn't go away, I don't think we will be going at all...we'll just have to wait and see how he does today.

Take care and I'll sign on tomorrow morning or tonight to let you know if he's feeling better.

Tuesday, September 20, 2005 7:50 AM

I don't have much time today because I'm already at work...

Kevin finally got his Vitamin K that he needed. It didn't go all that well. It took a long time for the IV solution to run through. The hospice nurse was a little confused too. Plus she was really late. That poor woman didn't end up leaving our house until after 7pm. We fed her dinner. The Vitamin K was supposed to be in a syringe and pushed through his central line over 10 minutes. Well, it didn't come that way. We had to hang an IV bag and it took an hour. Kevin eventually got really pissed from having to sit in one spot and he got to be uncontrollable. Finally I just got up, took the IV bag and held it up in the air and took him outside. As soon as I did - he calmed down. Then he started to babble. He just didn't want to be in there any longer.

We went down to Gan and Pop's house afterwards. He said "Pop" for the first time. I wasn't there to hear it. I had stepped outside. He can also say "Bye Bye" now if I hadn't told you that already. So, then we went home and tried to get Gracie into bed early. That didn't go well. She told me that she hated me. I have never heard her say that before. I was pretty taken back by it. We don't talk like that at home. I asked her what she said (because she was yelling it to me from upstairs) and she said, "I said I hate you!" Oh, how lovely. I told her it hurt my feelings and we don't say things like that to each other, but she didn't care. I knew I would probably hear it one day, but I figured she would be around 12 instead of 3! She really gave us a fit last night. She was overly tired. But she woke up with plenty of attitude this morning too. I don't know what her problem is these days. We try to give her all of the attention she needs. Maybe it's not enough. Hopefully the couple of days away will be good for her. If not, we'll leave her there. :)

Monday, September 19, 2005 6:53 AM

It was an interesting weekend. We didn't have Gracie until Sunday afternoon. Boy, I think it would have been less stressful to have a drunk Hell's Angel in the house instead. She got pretty cranky as the night went on.

Chris and I didn't really know what to do with ourselves because we had nursing help for Kevin and didn't have Gracie. We needed to get things moved out of the den to make room for Kevin's stuff. But I don't have any place to put it! We got a little bit done. But it wasn't much. Gracie had called me on Saturday afternoon and asked what I was doing. I told her that Daddy was cutting the grass and I was paying bills at the kitchen table. She said, "So you are alone?" I was. She said, "I will come home now to be with you so you won't be alone anymore." I told her that she was sweet, but she should stay and have fun for one more night at Aunt Linda's house. She said, "OK, but I will wake up in the morning and come right home so you won't be alone anymore and you will be happy." I told her that would be great. If only she stayed that nice after she arrived home....She hadn't had a rest and it was too late to let her have one. She and I went to the park for a bit and played. My big butt almost got stuck on one of the slides. I told her that I was too big but she told me I wasn't. I don't know why I listened to a 3 year old. Then she went home for an early tubby.

Kevin did good this weekend. He's got a new trick!! If you ask him if he has a fever he will put the back of his hand up to his forhead and check! It's cute. But, unfortunately, he did get another fever last night. It was higher this time. Over 102 degrees. The nurse woke me up at 3am. He was very hot to the touch. But his mood was normal. He was throwing things on the floor, smiling and giving me raspberries. So I figured it wasn't an infection or he wouldn't have been that well tempered. I stayed with him until almost 4am and then I layed him down to watch a movie and went back to bed. His temperature is back to normal as of this morning. We didn't take him out anywhere so I don't know what it could be. I just hope it stays away!

Speaking of hoping things to stay away...the weekend nurse is getting on my nerves. I don't think Kevin really likes her either. He's fussy with her. She didn't feel well on Saturday and she was short fused. She seemed to be getting frustrated with him. I would come in a lot and take care of him. I would calm him down or change a diaper. The nurse didn't like that. I explained to her yesterday that even though she is there to help, that doesn't mean that I am not going to do anything for my baby when she is there. Saturday morning he was crying when I came downstairs and I picked him up. I disconnected his food and walked to the front door with him. I was going to take him outside. She walked up and told me to give him to her. I said, "Why?" She just stared at me and said, "Oh..." I told her that I was taking him outside for a few minutes and kinda gave her a "look". She backed off. There's just something about her. She has the personality of a slug. Slow and quiet. We really appreciate the help - but I'm just not too sure about this one. We have Chris' company picnic next Saturday and I'm not sure what we are going to do. I am not leaving her with Kevin alone. And I'm not sure we should take him with us since he's been sick lately. Maybe Chris and Gracie can go and I can stay home with Kevin. But I would like for Chris' friends and co-workers to meet Kevin. I just don't know...

Well, I'm running out of time. I better get moving. Have a great day everyone!

Friday, September 16, 2005 6:28 AM

I found out that my sister called the hotel to yell at them for being rude. They said that Sun Fest is this weekend. I looked it up. It is this weekend, but not Thursday night. It starts Friday afternoon. They still could have sent a nicer response to my inquiry. We will be going to Hagerstown instead. It's only about an hour away. We are going to stop at the Catoctin Zoo on the way up for Gracie. Then we will hit the outlet mall, see the underground caverns and go to a recreation park with miniature gold, go-carts, etc. I think Gracie will have fun. The hotel has an indoor pool too.

Kevin didn't have a good night last night. He started crying shortly after 3am. He wouldn't stop. I didn't hear the nurse so I got up and stood at the top of the stairs. I still didn't hear her. I assume I would hear, "It's OK...calm down." Nothing. So I went down. It was 3:30am. He saw me and raises his hands for me. The nurse was there, patting his leg. She wasn't saying anything to him and was looking at the TV. I picked him up and he calmed a bit. I gave him lots of water. He was very thirsty. She obviously couldn't get off her butt to do that. He had a fever of 100 degrees. That's not bad for Kevin, but when he gets a fever, it doesn't go away with Motrin and usually just gets worse. I was thinking that he was getting a central line infection. Kevin settled down and I sat on the couch cradling him. He spit at me and smiled. That means that he wasn't feeling too bad. But he felt very warm. So I gave him Motrin. His breathing was excessive. I put him down at 4am and went back up to bed. He cried again after I got up there but it wasn't for long. I stayed awake until after 5am so I heard him down there fussing on and off. I was worried. I prayed. I didn't want him to have to go to the hospital again. I didn't want to take him. It's not a good experience. And it's very tiring and draining. But, as of 6am, his fever was gone. He is back down to normal. I told the nurse to check it often and I would call her during the day a couple of times. He's resting peacefully.

Gracie gets to go to her Aunt Linda's house today and she will come back on Sunday. She has fun there. We have nursing coverage so Chris and I will be able to work on getting the den emptied out so we can make it into Kevin's bedroom. It'll take a long time. I don't have any place to put the stuff that I'm taking out of the den.

We are also waiting on some IV meds for Kevin. His PT/PTT levels were down so he needs some vitamin K. I don't want him to get the shots again. The last time the nurse used adult needles and he got 2 shots. It was horrible. This time he will get it in an IV drip. I can do that. It will probably arrive this evening. And then he will get his blood work checked again in 1 month to see if he needs anymore.

One last thing...Kevin now blows kisses! He doesn't do the kiss sound, but he puts his hand up to his mouth and pulls it away quickly when you tell him to blow you kisses. Then he gives a big smile. He knows he's too cute. Have a great weekend everyone!

Thursday, September 15, 2005 6:42 AM

I got to spend time with Kevin yesterday by myself. The nurse had to leave at 10am and Nina couldn't take over until noon. So I got to babysit my son. He and I took a little trip to the bank (drive thru). He loves taking car rides.

Kevin had physical therapy yesterday afternoon. He did really well. He is starting to use sign language more and more. He also got to wear his new shoes while he was in his bouncy chair. It was pretty funny at first. Kinda like when you put scotch tape on the bottom of a cats paw. (If you have never seen that, you gotta try it.) He adapted very fast.

His bottom has gotten bad again. (We ran out of the Ilex cream.) But, I found it on the internet and some was delivered yesterday. His hiney had started to bleed again. I'm pretty sure it's because he isn't getting changed enough at night. How can she change him when she's asleep? Oh, I said something to her about her being late. I worked it into a conversation. I asked her what time the morning nurse arrived and she said about 20 minutes late each day. I said, "Oh, so is that why you come late every night?" She rolled her eyes at me and said that there are other reasons she arrives late and that she wasn't always late. Like last night, she was there at 9:10. Got news for ya lady - that's still late! Whatever. At least I got it off my chest.

I'm not sure if we will be going to the beach next week. I had sent a note to another hotel on the boardwalk with an indoor pool asking if we could check in earlier than 3pm and they didn't even respond. In a way, that's better than the last response I got. (Yes, I'm still irked about that one.) How about I just post that hotels name on this website and see if they miss out on about 100 potential customers? I'm not above that...Commander Hotel on 16th Street. That's where we've stayed the last 2 times we went to the beach. I know I won't be going there again. OK, I won't complain about that anymore - I promise. I was thinking about maybe staying at a hotel in Hagerstown, MD because that would be close to the outlet mall up there and they have a Carter's shop. I'm sure I can find a place with an indoor pool that Gracie would enjoy. At least we would get a break and get away. It isn't the beach, but she has the rest of her life to get to the beach. She keeps asking to go to Disney World. I tell her "one day". She's fine with that response. She doesn't understand that "one day" could mean when she's 35 years old and taking her own family and paying for it herself...Seriously, we should be able to take her within the next 5 years or so. Hopefully Kevin will be well and go with us.

I still didn't hear anything from Dr. Hanley. But AJ's mom reassured me that he is really busy and not to worry about it. I pray that he can help. I pray a lot. Anywhere and anytime. I don't ask for things, like Kevin's recovery. I used to. I thank Him for what He has given us and for letting us have Kevin. I thank Him for letting Kevin stay around and show us all of the little things he can do. And I thank Him for the things to come with our son. It's all in His hands. Oh, I also ask Him to give Gracie an attitude adjustment. But I think He's leaving that part to me. Thanks God!

Little Miss Attitude has her first full session of school today. I know she'll be fine. And I know that when I get home and ask her about what she did and how it went she will say, "It was OK." I'm sure she'll say those same words when I ask her that question when she's 16. Gotta love 'em.

Time to go....have a wonderful day!

Tuesday, September 13, 2005 6:46 AM

I sent an e-mail to the hotel that we wanted to stay at in Ocean City asking them if we could check in before 3pm and explained our circumstance (that we only get one night away and the reason why)- they wrote back. They told me that they have a 2 night minumum stay and they won't accept a reservation from us. I responded stating that I would find a hotel that was more understanding of our situation. I wanted to tell them to shove it - but I'm better than that. I think. Jerks. Hopefully I can find something else with an indoor pool.

Me and the kids ate dinner together at the dinner table last night. Kevin was awake so he sat with us. I gave him a baby biscuit and a slice of cucumber with the seeds taken out of the middle. He thought that was interesting. I would have given him baby food to play with and explore, but I was on my own last night and I couldn't deal with all the mess. OK, I didn't FEEL like dealing with all the mess. Lazy me. He kept pulling on his NG tube and ripping the tape away. I took him in the living room to change his diaper and looked away for a whole 2 seconds. When I looked back he had only 2 mm's of tape holding his tube. He was pulling as hard as he could. I said, "NO NO Kevin" and shook my finger at him - then he cried. He knows when he's in trouble. I didn't yell at him, but I was firm. He doesn't like that. He got over it and I re-taped his face. Afterwards, the 3 of us went to the park. He has such a good time watching the kids play. He and I went on the big kids swing together.

I had told you all that he does "raspberries" with his tongue. Now he does it about 70 times a day. It's interesting when you look at him and he gets you right in the face and sprays you. It's also kinda funny when you go to give him a kiss and he waits until you are up close and then does it. Then he gives you a big smile. He knows what he's doing. He's just wicked. I've got to run. I'm running a little late today. Take care!

Monday, September 12, 2005 6:31 AM

We had a pretty good weekend. Kevin had his blood drawn on Friday and I should hear those results sometime today. I'm also going to send a note to Mary Kay that since taking him off of his Zinc that there has been no change in diarrhea or vomiting so I want him to go back on it. There has been no response from Dr. Hanley regarding Kevin. Maybe he just doesn't have the time. He will be receiving the package today via Federal Express. I e-mailed his secretary and told her it was coming. Here we go, now my stomach is getting upset again! I was up in the middle of the night thinking about it too.

Nina got Kevin a little pair of tennis shoes. I need to start putting them on him. We put up his swing outside yesterday. It is one that I got from Target months ago. He liked it. He clapped his hands when we would give him a big push. He can recline in this swing. I think he is scared of the other swing because he doesn't have enough support. Chris had put him in that swing at the park on Saturday night and Kevin wasn't happy about it.

We had a day nurse on Saturday and Sunday for the first time ever! She was pretty good with him - she was new. We stayed home to help her if needed. Kevin didn OK with her - as long as I wasn't around. As soon as he saw me or heard me, he would cry. He's mommy's baby. We don't have the coverage for next weekend, but we are fine taking care of Kevin. It's just a HUGE help to have someone there to help.

Nothing else to report - oh, except that his new thing is to open up the neck of my shirt, look at my boobs and then smile at me. He does it over and over again. Such a man!

Now that you have a mental picture of that - I will sign off. Have a great day!

Friday, September 9, 2005 6:36 AM

Well, no new shoes for Kevin. They didn't have the right size in the ones that I wanted. They did have the right size in some little boating type shoes, but they were $13 and I don't even pay that much for most of Gracie's shoes! I want the kind that go above the ankle to give support. I'll check someplace else this weekend. I'm sure I can find them for less than $13.

It was good to get out though. It went pretty smoothly. He only threw up once and needed 1 diaper change. That would have gone better if I had remembered to pack baby wipes! Can you believe I didn't pack baby wipes? How many times have I had to pack a bag for this boy - I know better. Nina was the one who changed him, so she used paper towels. Kevin was well behaved in the store. We put him inthe stroller. I don't think he would sit in a cart. Plus he would get germs. He was fine - unless you stopped. They he would complain. He wanted to keep moving.

I sent an e-mail to Dr. Hanley at LPCH yesterday morning. He hasn't responded yet. I'm sure he's a busy guy. Pat said she was just waiting for a copy of the last cath and everything was ready to send. She said it should go out today. In my e-mail I asked the doctor to at least give us the chance and review his chart. I explained that the other hospitals (CHOP and Boston) didn't do that. One didn't even bother to respond and the other one said that if Hopkins couldn't do it then neither could they. I also explained that Kevin has grown considerably since his last cath in May (after that pesky cardiac arrest episode), and that he is due for an ECHO next month. Maybe he would like to see the results of the ECHO or another cath before he makes a decision. I get nervous thinking about this. (I have a craving for a Italian cold cut sub right now...Gee, I guess I'm a stress eater and that's why I've gotten so damn fat!) That's OK, Gracie thinks I'm soft to cuddle with.

We are going to the BEACH in 2 weeks!! It will be for one night. We are not taking Kevin. We'll leave a bowl of food and water for him...oh, we can't do that can we? Nina is going to stay with him, plus we will still have the nurses. We will leave on a Thursday morning and come home by 5pm Friday. That will be enough time for Gracie to put her toes in the sand and ocean and swim in the indoor pool at the hotel. The nurse will have him Thursday and Friday daytime and Nina will have him Thursday evening. She will also stay at the house in case the nurses need any help or have any trouble. I'm so excited! There is a Carter's outlet up there somewhere so I'm hoping I can find some clothes for Kevin in his size that will snap or zip up the front.

I was given an application for respite care. That will give us nurses through the County to take care of Kevin if we wanted to take a real vacation. I can't imagine being away from him longer than one night. I also couldn't leave him with nurses that don't know him and he doesn't know. No way. Gracie wants to go to Disney World and I told her that we would - one day. Hopefully Kevin will be there too.

Take care and have a great weekend!

Thursday, September 8, 2005 6:37 AM

The physical therapist came by yesterday. Nina said that she wants us to get shoes for Kevin that give support to his ankles. We should put the shoes on him when he is in the bouncer or saucer. He isn't going to like that. Nina, Gracie and I are going to Target after I get home from work. We have to take Kevin to see what shoes will fit him. He'll enjoy getting out. He said "OK" and "ball" last night for the nurse. You should have seen her face. She was amazed.

I was in touch with Mary Kay (GI). Dr. Schwarz does want him to come off of the zinc for now. It will be retested in a month or so. She wants to see if it is contributing to his vomiting and diarrhea. He will be getting those other blood draws he needs this Friday.

I spoke to hospice last night. He will be coming off of hospice care. The reason is that if he qualifies for hospice under cardiology (instead of GI like it is now), he would be removed from hospice care if this new doctor see's Kevin and can help him. It has something to do with insurance. But, if the new doctor says he can't help Kevin, then he can stay on hospice. It's a confusing mess! He will be on the other home nursing visit program until something arises and he no longer qualifies for that. Then we will be totally screwed. Kevin's medications cost over $2000 a month. Sometimes up to $3000. I could stop contributing to my retirement fund - but that's not going to help enough. I need to stop worrying about it anyways and we'll just see what happens. There's nothing I can do about it right now. It'll be fine.

Gracie has here first day of school today! Nina's hubby will be taking her and I will pick her up. I told Gracie that he was going to leave her there with the teacher and other kids and I would come back to get her. She was totally fine with it. She's such a big girl. Literally, she's the biggest kid in the class - even bigger than the boys! Our Little Amazon. She was playing last night and showed me her fist and asked me if I wanted a knuckle sandwhich. She got that from me. Gee, I hope she doesn't do that to any of the other kids! Nah...

Well, I've got to run. Take care.

Wednesday, September 7, 2005 6:55 AM

Not too much is going on at home. Nina was working with Kevin yesterday evening and he was trying to say "ball". He is VERY close to it. Oh, I forgot to tell you all - his hiney is almost healed! It was the Ilex. It's a pain to use, but it's working for him. He isn't bleeding from there anymore and doesn't cry when you wipe him. You can see a significant difference.

I haven't heard anything else about him coming off of hospice care. I'm not going to call them and check on it. I'll just wait to see what happens. I had mentioned to the nurse that he won't qualify for this other nursing care if his central line is taken out. Maybe she took that back to her supervisor and they will just leave him alone. Probably not. Kevin needs a couple more blood tests and those will be taken from home this week or early next week. One thing we need to check is his phosphorus. If that comes back high, then we can take him off of one of his medications that upsets his tummy and makes him poo and throw up. They had told me to take him off of his zinc because that came back normal. That doesn't make sense. If something is normal and you remove the meds, wouldn't that make the person go below normal? Why not just leave it alone so it will stay normal? So, I brought that to their attention. Needless to say, he will be left on his zinc. His bili count was 33 - I can't remember if I already told you that or not. It's a bit higher than last time. It can make him uncomfortable - but he's doing OK. He's a happy kid right now. Full of smiles and clapping. He also tried to do "hot potato" from the Wiggles. He's making some great progress - it's just taking some time.

Gracie also had her orientation at her new school yesterday. It went pretty well. She liked all of the toys there. The teachers are aware of the situation at home and one of them came up to me and started to ask if there was anything they could do...then I got upset. I just teared up. I HATE that! Now she probably thinks I'm a nutjob. I don't understand why I can handle it fine sometimes and other times I just can't. Then Gracie came over because she had seen me crying and wanted to know what was wrong. She said, "Mommy, I saw you crying across the room. What's wrong? Are you OK? Is it because my brother is sick? When he grows up he won't be sick anymore." That just made me keep crying. I think I'll write the teacher a note explaining myself so she doesn't think I'm a basket case. Gracie has her first day tomorrow - but it's only for 1 1/2 hours. I'm going to pick her up and take her out to lunch.

Boy, I said I didn't have much going on and I keep typing and typing...I'll sign off now. Have a great day!

Tuesday, September 6, 2005 6:31 AM

Gracie stayed with her Aunt Linda for 2 whole days! It was a nice break for Chris and I. Gracie didn't mind staying since she could be with her cousin...and the addition of 2 new puppies didn't hurt either. Gracie was really good with the puppies. But we aren't getting a doggy at our home anytime soon. I think we have enough stress in our lives right now - don't you?

Things started out with a bang on Friday night. Kevin's day nurse, Abi, called that evening and asked if she was still needed tomorrow (Saturday). I had no idea what she was talking about. She said that she had received a message from the nursing company asking her to work on Saturday. I don't know what happened to the regular nurse. So I told Abi to please come. She couldn't work the entire shift - but it was long enough for Chris and I to sleep in and go out to breakfast together. I had told Abi that I didn't hear from Carol (the scheduling coordinator for the company). Abi told me that Carol had moved to Atlanta and was no longer with the company. So, the communication has gone straight downhill. The owner of the company is handling things and not doing a really great job of it. Chris and her had words on Friday night to make her understand that communication is necessary. I think she got the point. She didn't even say if the Saturday nurse will be coming back or not - she didn't know what the problem was. Just that she called out. Hopefully she just had plans for that day and will be back next week. We'll see.

We didn't take Kevin out anywhere. Only the front porch. And the park yesterday with Gracie. He and I were sitting on the bench and Gracie was on the other side of the playground and she yelled something to me and I said, "OK!". And then.....you'll never believe it....Kevin said, "OK!" I was speechless. It was so funny! That evening Kevin sat with us at the dinner table and he was copying everything Gracie did. Then we were saying "OK" and he said it - over and over. Then I called my parents so they could hear and of course all he would do was stick out his tongue and spit. What's that called? A raspberry? He does that about 30 times a day. He did it when I went to give him a kiss yesterday too - right in my face. Then he smiles really big.

Kevin also got a tattoo yesterday. A big snake on his upper arm. Gracie has 3. I'm sure those tattoos will go over really well when she goes to meet her teachers today at Catholic school.

I also heard back from Pat Kane. She told me that she thinks it is very important and essential that we get a second opinion. She wants me to contact Dr. Hanley and let him know about Kevin and see if he is willing to review Kevin's case. Then see what he would like to review (ECHO, caths, charts, etc.) and Pat will send them to him. So, I'll call today and leave a message for him. I hope he is open minded. I'm getting sick to my stomach again. I better get going anyways. Take care and have a great day everyone! OK! (smile)

Friday, September 2, 2005 6:36 AM CDT

Unfortunately, I have to start off complaining! I am so annoyed! Last night I went in to give Kevin a kiss goodnight and the nurse said, "Mom, no." as soon as she saw me entering the room. She had just layed him down - although he wasn't tired. He was laying there babbling - he wasn't sleepy. She just didn't want to deal with him. And she didn't want him to see me and get upset for a whole minute like he does. I said, "Are you trying to tell me that I can't give my son a kiss goodnight?" She waved her hand and made that "ppssshhh" noise like "whatever" and looked away from me. I wanted to slap the crap out of her - I really did. I never know what is going to be his last moment and I will always kiss him goodnight. I didn't say that, but I should have. And Kevin didn't fuss when I said goodnight to him. He stayed calm. I had just received 2 signs for both kids rooms that say "Always kiss me goodnight" that I haven't hung yet. (Well, I haven't had my Dad hang them yet...). I think that is very important. I'm hoping that when she goes on maternity leave that we get someone even better (and who arrives on time). She likes Kevin and cares for him - but it could be better. There is someone out there who would take good care of him.

My cousin Tony was up to visit yesterday and got to meet Kevin for the first time. He got some smiles. And he got to see Kevin's temper. And he got to see Kevin throw up. And he got to see a very interesting diaper change. I'll explain: I started to use a new ointment on Kevin's hiney called Ilex. It is used for moist wounds. You put it on and then put petrolium jelly on top of that so the diaper doesn't stick. Well, there wasn't enough jelly put on and too much Ilex and it stuck. Bad. It was like when the lid of the pizza box sticks to the cheese on the pizza and you have to pull it apart. And you can't get the Ilex off with a baby wipe. You need to do it with soap and water in a tubby. In this case I think he needed a blow torch. Kevin has a bunch of Ilex stuck to his butt cheeks and not to his wound. His butt cheeks won't get chafed - that's for sure. This new paste is something we all need to get used to and we'll get it down right - eventually. Hopefully sooner that later.

My Gracie is gone for the night. She is going to Aunt Linda's house tonight to spend the night. Linda will bring her back late tomorrow afternoon so Chris and I have the day together. At least until the nurse leaves at 3pm. I don't know what we are going to do. He mentioned a movie. I don't know if there is anything out there we both want to see. I don't think I can handle "The March of the Penguins" because I don't want to see something get eaten or a baby penguin abandoned. I know, I'm a ninny. I watched "The Fox and the Hound" with Gracie the other night and I cried twice and I didn't even finish watching it!

We haven't come to a decision about hospice yet. I was told that he did qualify for this other type of nursing care home visits because of his central line. BUT - Dr. Schwarz wanted to know why it was still in. So, if that needs to come out, then we won't qualify and then Chris and I will need to pay for Kevin's medications out of pocket - that's about $2,000 a month. The only thing Kevin's line is used for is blood draws and that doesn't happen often anymore. It is used for antibiotics - but he only needs those because the line itself causes an infection. I guess it doesn't need to stay in - but the doctors at the hospital don't want it to come out. It should be removed if he gets another infection.

I mentioned to Nina that I hadn't heard back from Dr. Ringel. She said I should send it to the cardiac nurse (Pat Kane). That's a good idea. I'm going to forward my message to her and have her stay on top of him. I'll do that this morning.

That's about it for us. I hadn't planned on taking Kevin out anywhere this weekend - but you never know. The nurse isn't working on Monday because I'm off. I had wanted to take Gracie to the zoo, but I can't now. The nurse said she wanted off for Labor Day and then asked me what it was. I guess she needs a break too. Oh well, we'll be fine. I hope you all have a great weekend!

Thursday, September 1, 2005 6:39 AM

Gracie has a new word...it's "awesome". I heard it about 60 times last night. She picked it up from her cousin Denee. Everything is awesome. She also had a minor melt down this morning because she wanted the barrett that was in my hair and I wouldn't take it out and let her use it. It didn't matter that I had another one just like it that was a different color - she had to have the one in my hair. Yea right kid. I picked her up and took her outside and plopped her down by Nina's car. She is now for sale. Item number 123456789 on E-bay! Starting at $.99! The item description is "Awesome 3 year old".

Kevin is great. The Infants and Toddlers lady left an alligator thing that vibrates. The battery was almost dead. Dad put a new battery in it and Kevin LOVES it. It's for mouth stimulation. He puts it in his mouth and chews on it for a couple of seconds and then pulls away and smiles at you. Then he opens his mouth again and starts all over. We have it on loan for 2 weeks, but I think I'll look in to buying one. It should help with his gag reflex. I didn't have a chance to try his new cup last night. I don't think I can tonight either...Chris and I have Gracie's open house at her new school. Judy has Kevin duty and Gan has Gracie duty. We just might not return from open house and drive to the beach! But I think a few people would get upset over that stunt - we better not.

I was chatting in e-mail with the mother of AJ. He has the same type of heart condition as Kevin - but I'm not sure how extreme it is. I asked her about his heart surgeon. She told me that he is known for making pulmonary arteries larger. I looked him up on the hospital's website (Lucille Packard Children's Hospital in Palo Alto, CA.) I would have sent him an e-mail, but he didn't have an address listed. So, I forwarded his information to Dr. Ringel telling him that I wanted him to look over Kevin's information to see if he could do anything to help. That was yesterday afternoon and I haven't received a response yet. Hopefully today or tomorrow I will hear from Dr. Ringel. The only thing I am worried about is the new doctor taking JHH's word about Kevin's condition and not even reviewing his records. That happened with one of the other hospitals we requested to review Kevin. They said that "if JHH can't do anything then neither can we." They didn't even take a look at him. I'm more than willing to take Kevin out there for an exam. My stomach is getting upset thinking about this. It makes me nervous. So, pray that someone will give Kevin another chance. Hopefully it will be this doctor in CA.

One last thing, I received Kevin's lab results and everything seems to be doing OK. His bili count has risen to 33, but hopefully it will come down because his medication to help with that was just increased because of his weight. It was 21 last time it was checked. We'll pray that gets taken care of...

Thanks everyone - have a wonderful day!

Wednesday, August 31, 2005 6:53 AM

Kevin is still doing well. He has started clapping - but he won't do it if you ask him. He will only clap when he wants to. He and I sing the Beach Boys "Barbara Ann" song and he does the "Ba Ba Ba" part of it - on cue. The Infants and Toddlers teachers came by yesterday afternoon. They have set some goals for Kevin that we will work on for the next 2 weeks until they come again. They gave us a special cup that he has already started to use (he had a teeny bit of Coke last night.) We will start to put baby food in it also. We will work on putting things in his mouth to work on his gag reflex. He is putting objects in and out of a box. They brought a puppy that barks and moves when you hit a big red switch. They showed it to Kevin and he caught on immediately. These ladies will now come once every week instead of once a month. They are going to put something together with pictures of Kevin's favorite things so hopefully he will be able to point to what he wants. Right now he is reaching for things and grunting. He wasn't even doing that the last time these ladies saw him. We will work on these things with him and hopefully the day nurse will also. The ladies that came yesterday were very impressed with him and his progress. He's a smart cookie.

I've been thinking about having a birthday party for him this year. It will be here before we know it. He was in the hospital last year but he should be home for #2. We need to celebrate! Don't you agree?

Monday, August 29, 2005 6:31 AM

Friday we took Kevin to his GI appointment. First of all, we got to park in a handicap space because we now have a handicap permit for Kevin. That was a HUGE help. It will come in handy when it starts to get really cold outside too since we won't have to walk too far. Kevin weighed in at 23 pounds even. He is also up to 29 inches long now, so he is growing in width and height. I had told Dr. Schwarz that I was concerned because he was getting bigger around the middle (tummy area). I get worried that his liver is getting bigger. She grabbed his thigh and said, "That is fat. Not liver fat, regular fat. He's FAT." OK - he's fat. So, that's good from the GI point - but again, not good news for his heart. The nutritionist was not there on Friday so she couldn't give her recommendations on his weight. I told Dr. Schwarz that Kevin is already off of his feeds at least 1 1/2 hours each day because we disconnect him for many reasons. She said, well he may end up being off of them even more. That's ok with us, but I don't want him to get hungry. I also showed her his hiney. It isn't getting worse - but it's not getting better. She said that there are medications he is on that promote vomiting and diarrhea. She requested blood tests to see if he can come off of any of those medications. We also cut back on the Erythromycin. We cut it in half. By Sunday morning I already had him back on the noraml dose. He wasn't throwing up as much as before - but it was noticable. He seems to be back to normal now.

Yesterday we went to the mall! It was Kevin's first time. The handicap permit came in handy there also. I have never taken him before because of the immune problem. He doesn't have all of his vaccinations and I don't think he ever will. There really isn't any point. He will get his flu shot again this year - but I won't take him anywhere during cold and flu season. I've strayed from the original story here....back to the mall....Nina went with Gracie, Kevin and I (Thank God!). As soon as we got in there he was just looking all around. He was pretty well behaved. We went to get lunch first and he was pretty entertaining. He wanted to get in to everything. Then we went to the indoor play area for Gracie and he watched her for a while. Then we went to get some clothes for the kids. I finally found the 12 month onsie's with feet in them for Kevin....I had searched and searched and after I found them I left them on the rack! Those suckers were $18 each! I don't even pay that much for my pajamas! I just can't get over that. We have plenty of little pants and tops we bought at WalMart that will get him through. I'll check e-bay I guess. Anyways, Kevin ended up taking a little nap while we were there and then go to the point that Nina had to carry him everywhere she went. He's getting spoiled. We were there for 4 hours. It was tiring, but we had a good time. It was so busy - there were too many people. If I do it again it will have to be on a work day when everyone is in school or work.

Kevin still isn't catching on to the walker. We push him around in it and he really likes that. But when you stop, he nods his head like "lets go". When he is in his bouncy chair, saucer or walker we can't have him hooked up to his food anymore. He just gets too tangled. He's a really happy baby right now. Just these last couple of weeks have been different. I don't know what the difference is, but he's more of a joy to be around. He always was, but him being cranky a lot wears on you. I'm curious to see what the cardiologist will have to say when he sees him in October. You never know...

That's about it for now. I have to go check on e-bay for Kevin's pajamas! :)

Friday, August 26, 2005 6:52 AM

The walker came...he won't use it. It's only been one try though. I put it together and Nina got him in it. He held his feet up so they wouldn't touch the floor. And when she tried to put his feet to the floor he would yell at her. I think they were cuss words - they were just a little mumbled. When she would move the walker for him, he would pick up his feet like it was a ride. He does the same thing when you swing the bouncy chair. He's a trip.

Mom did get the bag balm yesterday...$7 for 1 teeny, tiny, little 1 ounce can! We started using it yesterday so we'll see how that goes.

Terry from hospice called me at home yesterday. She told me that Kevin does NOT have a limit on his hospice care afterall - which was good news. Dr. Schwarz wants to talk to her so we will call Terry when we get called back in the examining room for our appointment today. Dr. Ringel can qualify Kevin for hospice. I guess it doesn't matter at this point. He will be covered even if he gets switched to the visiting home nursing company.

Not much else is going on...I wanted to tell you all about the walker that he won't use and the hospice update. I think that was it. I'll write this weekend to let you know how it went today. Have a great weekend!

Thursday, August 25, 2005 11:30 AM

It was mentioned to me a few days ago about Kevin coming off of hospice care. I was reluctant because I'm just getting sick and tired of changes. The nurse we have for Kevin's hospice likes him and he likes her. Well, tolerates her. I get his medications delivered right to the door and they are paid for. I'm also not sure if our insurance will pay for regular home care nursing to come in and take over. I was going to fight it. I spoke to the hospice manager today and she told me that according to Dr. Schwarz, Kevin isn't terminal right now. That's right, but he is considered terminal from the cardiac standpoint. I could get Dr. Ringel to classify him under his authority and keep him on hospice care. But then I found out that there is a limit. Nine segments or units (something like that). Kevin has been on hospice since April of 2004 and has used 8 segments. If I leave him on hospice care, he will run out of the hospice benefits. Then I won't have any hospice benefits when he needs them. WHAT A PAIN! So, I have no choice at this point. Kevin has to come off of hospice. But they said they are going to put him with home nursing visits and they have already worked out that we can keep the pharmacy privledges. The hospice company seems to be working on getting everything switched over for us.

Kevin's bottom is still the worst I've ever seen. Mom said that she thinks she has some bag balm and if she doesn't she will go and get some for him today. Hopefully that will make a difference for him. His butt is bleeding when you wipe him. No matter how gentle you are, it hurts him.

That boy is getting SOLID. He has beefy little thighs. He's also much happier these last few days. He doesn't cry to be held as much and is content sitting in his swing, saucer or bouncy chair. That makes it a lot easier on us. And he is still putting his finger up his nose. It's so funny to watch. His throwing up is down to about 4 times average within a 24 hour period. Nina mentioned to me the other day that it seems to have changed after that nurse Stacy left. I hadn't thought about that before - but she's right. Nina said she could have been giving him too much medication on purpose. Who knows. I'm glad she's gone. Kevin is doing so well. He will sit on my lap sideways and he will just rest his head on my chest and watch TV. He also likes to put his forehead against mine and rub it. He's a funny little character. He's sweet.

We go to JHH tomorrow for our GI visit. Our time has been changed to early afternoon. I will write when I get a chance this weekend to let you know how it went.

Tuesday, August 23, 2005 10:50 AM

Kevin has now mastered the task of putting his finger up his nose. He seems to really like it and does it often. You sit there and talk to him and he shoves his finger up his nose and just keeps it there, starting at you. There is no way to keep a straight face. You just have to watch him closely because he gets his finger caught by the tube and can yank that out accidentally. I tried to stop him but after 15 times I just went ahead and let him do it. He's hysterical.

Kevin also got a little bit of Frosty from Wendy's last night. Chris gave him itty, bitty bites. Very minimal. But Kevin liked it. He didn't gag or choke.

Kevin and I went for a quick ride last night to the ATM machine. He just loves being in the car. And God forbid that you stop at a red light! He hates that!

I have to run since I'm at work. I'll let you all know if Kevin finds any gold up in there!

Monday, August 22, 2005 2:47 PM

Friday night Judy watched Kevin and Chris and I had our date. Kevin was very well behaved for Judy. Chris and I went to Outback. We had called ahead and got seated immediately. That was a good thing because the wait was 45 minutes for others. Gracie had gone to spend the night with her cousins. I asked her who was going to sleep with me since she was leaving and she told me to sleep with Daddy. I said that he snored and she told me to pull the covers over my head so I wouldn't hear him. I wish the covers were that effective! I even took a bath Friday night! ALONE! It wasn't very long, I was tired. Saturday morning I woke up shortly after 7am and Chris and I headed to WalMart. It wasn't so bad at first - then it got busy and very ugly. We had to buy new clothes for the kids. Gracie has grown out of the size 4 winter clothes from last year and Kevin can't wear the 6/9 month PJ's this year. He needs to wear separate tops and bottoms now. It's not going to be convenient, but they don't make the size that he needs in the PJ's. So, it cost us a whole bunch of money at WalMart. Chris and I both got one thing for ourselves out of all that stuff. We were there for a very long time. After we got home, we had quiet time to pay some bills and go through things at home that we never have a chance to do. Then it was time for the nurse to leave. Kevin was pretty well behaved. He's moody sometimes.

Gracie got home late afternoon on Saturday. It was a nice break for us. And she liked being with her cousins. We didn't have a nurse Sunday - we never have. The kids were both cranky and I decided to take them both for a ride to the post office. Kevin doesn't go anywhere in the car besided the hospital and doctor's office. I just disconnected him from his food and put him in the carseat. He smiled immediately. Both of the kids behaved very well. Kevin and I ended up going for 3 rides Sunday. Of course, he starts to enjoy this as gas prices reach $2.75 a gallon!! It's all worth it for him. I take a peek at him whenever I come to a red light and he's back there smiling and talking. He was on the phone with my mom last night and he wouldn't shut up! Every time I took the phone away he would reach for it and grunt at me. It's getting much easier to understand what he wants because he is communicating a little better by using his hands and arms and noises.

I want to get him out more. Gracie asked Chris if we could all go to the mall next Sunday....that'll be an adventure. I feel better doing it now rather than when cold and flu season comes around. Since Kevin isn't throwing up nearly as much it's easier to get him out. Even if it's just to the park or for a walk.

His butt is still bad. (I couldn't find the bag balm Lisa.) And I just got something from Ms. Dee to try. His Nana came by for a quick visit yesterday. He liked being held as long as she was singing. Then he got fussy before she left. I found out the reason...he had pooped and I didn't know it and it was hurting his hiney. He was a peach as soon as I changed his diaper. I guess I wouldn't want to sit in that either.

He has an appointment this Friday with GI at JHH. I think that should go well. Except that we will be there all day because the appointment time is 11:15am and we will end up waiting 3 hours before we are seen.

Take care everyone!

Friday, August 19, 2005 6:39 AM

Kevin was really good last evening. He only threw up once for me. I reviewed his nursing notes to see how much he is throwing up in 24 hours and it's about 5. That's a lot better than the usual 20 or so. I'm going to ask Dr. Schwarz about taking him off the erythromycin to see how he does. It makes him poop so much that I can't get control of the rash on his hiney. I've started to put Neosporin on it now. If he starts to throw up more, I will definitely notice. Then I would just put him back on it. His throwing up had definitely slowed down before he went on that medication because his food was being warmed up. All we can do it try right?

Gracie is in to coming up to you and telling you she wants to tell you a secret and then whispers something into your ear. She told me last night that she loved me all the way up to the sky. Then she looked at my face and said, "Now that's a lot of lovin!" Then it was my turn to tell her a secret. I whispered in her ear that if she didn't finish her dinner she wouldn't get dessert. Then she told me another one..."Mommy, your breath really stinks." Twirp.

She spent some time with her Gan and Pop last night. Kevin and I watched Baby Santa's 3 times and Baby Mozart 5 times. Then the nurse showed up...late. She did come at 9pm on Tuesday night. I was amazed! But it didn't last.

I get to sleep in tomorrow! But I think I want to get to WalMart (I haven't been in about a year) so I will get up early. I can't go too much later because I may kill another WalMart shopper. I'm not a good shopper - I don't get along with others very well. I think it's others lack of manners that get me huffy. Gee, maybe I better just stay home...

I hope you all have a great weekend!

Thursday, August 18, 2005 7:09 AM

I only have a minute this morning, I'm running late today. Kevin's Aunt Cathy Bastain wrote on the guestbook that Kevin may be hitting the terrible two's early. Ya know, I was thinking just the other day that it may have something to do with his age. He's in that small body, but his brains are functioning like he's older. He's learning how to manipulate us. Gee, a milestone a mother just dreams of huh? He's a stinker.

I had horrible dreams about Kevin that night when I had the bad day at work. I won't even mention what they were about, but I'm sure you can imagine. I just couldn't wake up and I was crying so hard in my dreams. They were very vivid. But, I've moved on - I had my moment and now I'm better. I'm used to it.

Chris and I took the kids to the park last night for about 45 minutes. Kevin got some attention from the other kids and he just loved that. Kevin had a baby doll with him. He likes to suck on her fingers. It makes baby sounds when you squeeze the doll's tummy - he likes that too. Sometimes he talks back. I put him in the infant swing at the park. He screamed immediately - he didn't like it. I think there wasn't enough support to make him feel safe. He is also getting ready to roll over. He makes it half way and then stops. He likes sitting the wrong way on the couch too. If you prop him up he wiggles his way off of the pillow so his head is ready to go over the end of the couch and his legs are at the back of the couch. I sit there and watch him. Sometime I put him back on the pillow just so I can watch him do it all over again. He also tries to sit up. He just doesn't have the strength he needs. We'll work on that and we'll get there one day.

Not much else is going on with us right now. Chris and I have a date tomorrow night! Judy will be watching Kevin and Gracie is going to Aunt Theresa's house to be with her cousins for the evening. Gracie has gotten into the habit of sleeping "nakey" the last couple of weeks. I told her that she can't sleep "nakey" at her cousins house. She asked me why and said that she would anyways. Stinker. Heck, I'll send her pj's with her and it will be her Aunt Theresa's problem to get her into them. Sorry Theresa. :)
I probably won't sleep well tomorrow night with her gone. It seems to work out that way for me.

One last thing...I was given a caringbridge website to look at because this little boy (AJ) seems to have the same problems as Kevin. I checked it out and there are so many similarites. He looks a lot like Kevin too. I posted a message for his mom and she wrote back. I will send her an e-mail so maybe we can get together. She doesn't live too far away from us. It'll be nice to speak to someone who is going through the same things as we are. She's doing a good job with her son and he looks good.

Well, I said I didn't have a lot of time and I keep typing! I have to run. Take care!

Wednesday, August 17, 2005 6:33 AM

I was a little weepy at work yesterday afternoon. The building maintenance man who just started a few weeks ago was talking to me and Kevin came up. His neighbor has a child and wife that passed away from cystic fibrosis and a son that will be passing away from it. I don't really know how Kevin got brought up. I think he was asking questions. I was totally fine until he put his hand on my shoulder and told me that there is a special place for kids like that in heaven. Then I started to cry. I couldn't stop and I couldn't talk. Then he started to cry. I just had to walk away. I felt bad because I made him feel bad. I'm normally pretty good about these things because I guess I don't think about anything happening to Kevin. He's just doing so well lately. But it's still a reality and I think that guy made me remember that. I was worried about him later on knowing that he was feeling like crap for making me cry. I saw one of his co-workers and told them to let this guy know that I was OK and not to worry about it. He said he would. Poor guy.

I forgot to tell you all yesterday that Kevin started to give Eskimo kisses over the weekend! When you are cradling him, you put your face to his and ask for Eskimo kisses and he shakes his head from side to side and rubs your nose with his. It's cute. But he lets you know when he's not interested and pushes you away and screams. That's unpleasant. He's been a little harder to handle recently. He wants his way and if things aren't going his way, then he fusses. And fusses. But once you put on a video he wants or disconnect him from his food and walk around the house with him, he's totally fine. I put him in his swing last night and he fell asleep. He hadn't been in the swing in over 2 months. He's going to grow out of it soon because of his weight.

I'm not sure if any of you have noticed already, but Nina got Kevin's pictures up on the picture page. So, for those of you who didn't get to see the pics that I had ordered and sent out, now's your chance. They're really cute. I wanted the main page picture replaced but nobody knows how to do it.

That's about it for me. I'll try to get through the day without shedding any tears. Take care.

Tuesday, August 16, 2005 6:48 AM

We had a pretty good weekend. We had a nurse on Saturday so we took Grace to the fair. It was about 146 degrees outside. It wasn't so bad in the barn areas because you were out of the sun. Gracie got to snuggle a couple of goats - yes, I said snuggle. They were taken out of their pens so she could play with them. She said that they all loved her because she was gentle with them and they licked her. Gross. I got to pet a lot of animals too. Chris was pretty much hands off. I wasn't aware that cows shedded so much or how slobbery goats mouths were. A donkeys mouth is suprisingly dry. Don't ask....

We left the fair around 2pm. The heat was pretty unbearable. Kevin had a good day with the nurse. We spent the rest of the day and Sunday sitting inside. I finally took the Wiggles tape out of the VCR last night. I put in "Baby Santas". I thought that maybe thinking about Christmas would cool me off. It's one of Kevin's favorites too. He would get fussy this weekend and once you put that Wiggles tape in he would instantly calm down. He has us trained pretty well.

I'm not sure if you remember, but his calories were cut back 2 calories an ounce when he was at his last GI appointment in June. He was 21 pounds. They didn't want him gaining too much weight because it wasn't good for his heart. He will grow, but his pulmonary arteries will not. Well, after his cast was taken off he felt heavier than before. He is. Chris and I weighed him on Friday evening and he is almost 23 pounds. He is 22lbs 10ozs. He isn't throwing up nearly as much as before and it certainly is having an effect. I'm not sure what Dr. Schwarz will say. He sees her on 8/26. They may cut his calories again or cut the volume. Or maybe they won't do anything. Who knows. It is good in a way because that means his liver is still chugging along and isn't getting worse.

Chris and I had the day off yesterday. We went to Charlestown Races and Slots with mom and dad. I won $300! I lost it throughout the day, but I had never won like that. Boy, it sure is addicting. It's a good thing that place isn't closer and I don't have the time to go because I would probably go broke. But it was nice to get away and we all had fun. It was my first day off for leisure since I went back to work in January. I needed it.

Well, I'll sign off now. Thank you all for keeping our little guy in your prayers - he's doing well.

Friday, August 12, 2005 6:36 AM

Sorry about that everyone!

Chris and I took Kevin to JHH clinic on Tuesday for a 3pm appointment. Even with the horrible rain we had, we got there 10 minutes early. Kevin spent some time flirting with a couple of gals in the waiting area before we were called back to the cast room. I assumed that Kevin would get x-rays of his arm and leg and then get the leg cast removed if it had healed. It didn't work that way. I layed him down and they immediately started to cut off his arm splint. I was like "wait a minute! That's only been broken for 2 1/2 weeks! Aren't you going to take an x-ray first?" They said that they were doing what the doctor had told them to do and what the paperwork said. I tell ya, if I found out that his arm would have to be re-splinted I would have been really pissed off. But, it didn't. His arm and leg had both healed. The break in his arm was clean and smooth so it didn't take as long to heal.

So, after they got the cast on his leg off he was a totally different kid. He was so much happier. And he smelled like crap. Actual crap. The wounds on his leg were minimal because of all the duoderm tape we had been sticking inside it to protect his skin. He has one band of pink skin around the top of the thigh, but that's it. No other problems.

Then I had to take him for x-rays. He flipped. He behaved very badly. When we got out, Chris was standing there waiting with a wet washcloth for Kevin's head and face because he knew he would need it. Then we were told to wait in the cast room for the results. While we were waiting, we got a surprise! Officer Dee from the Peds ER, AnnaRuth and Catherine came to see Kevin! They brought along a new nurse. They had told her about Kevin so she wanted to meet him. The ladies all got to hold him. Poor AnnaRuth - he was a little fussy at first so I told her to go take him for a little walk. He liked getting out of the room. But he weighs almost as much as her so he got heavy really fast. Oh, it was funny when they came because the old fart that took Kevin's cast off really reacted when they all walked in. He said, "Oh, is this what happens when a cast gets taken off? I sure with this happened every time." Then he called the other cast guy in so he could see the ladies. Get a life. The 4 of them put together would still be too young for him. He kept talking about them even after they left. Kevin is very special - that's why he gets that attention. They all love him. Now if I can just get them to babysit for a weekend.... :)

The doctor finally came in with a bunch of other people and said that Kevin was good to go. He said he could start physical therapy again in 3 weeks but they had to be VERY careful. Then we left. Kevin stayed awake most of the way home. Now that I think about it - I think he stayed awake the entire way home...

He had pooped in the car so I took his diaper off and immediately got him into the sink. I just sat him in there at first and let the water run over his arm and leg so the icky stuff would go down the drain. He enjoyed it. Then I plugged the sink and put in some soap which he promptly ate. Normally he cries as soon as you start to get his hair wet to wash it. But he didn't this time. He just leaned back on my arm and enjoyed his tubby time. I kept pouring cups of water over his head and body. It was very relaxing for him. He was in there so long that the water started to chill and I had to put more warm water in it. We had to take him out because my back was really starting to hurt.

We got him all settled, but noticed that he cried when you would touch or move his leg. Chris said it would be sore for a few days. I hadn't heard the doctor say that, but Chris said he did. So, I told the night nurse not to touch his leg or move it. I said it about 5 times. I also told her not to pick him up under his arms - that he needed to be scooped up so his ribs wouldn't get broken. I asked her to tell the nurse the next morning. She did. And so did I...about another 5 times. He did well his first day home without a cast. He has already started to move his leg and it's not bothering him as much. He is sitting up unassisted again, but I have to have something behind him because he throws himself backwards when something doesn't go his way. He was playing with a toy the other day that uses a motor to push balls through it by air. He grabbed it and leaned it towards his face to get a better look. It shot a ball and a bunch of air in his face and he pushed it over away from him and he fell backwards at the same time. It was pretty funny. It would have been good to get on video.

I wish it wasn't so hot because then I could take him to the park with Gracie. He's not as bored sitting in the house since he can sit on the floor and play with his toys again. He's doing really well. He's also getting heavier. Even with the cast off, he's a load. His calories were cut back almost 2 months ago by Dr. Schwarz - but he's still gaining weight. It's partially because he's not throwing up as much. It's a good thing because that means his liver isn't going caput yet. But it puts more strain on his heart. But he's handling it well. He was giggling this morning playing with his Gan. He's so much happier...and so are we.

Take care everyone!

Wednesday, August 10, 2005 1:48 PM

Sorry I'm late!! I can't write now but I know you all want to know how it went yesterday. BOTH casts are off! No leg cast and no arm splint!! He's a happy camper. I will write in the morning to let you know what happened!

Monday, August 8, 2005 6:47 AM

Well, this weekend went OK. Not wonderul. Friday started out by Nina and I painting the liquid stuff onto Kevin's hiney. Nina would hold his buttcheeks open while I spread it on. Then we had to blow it. That didn't work too well so we got the blow dryer. Kevin didn't seem to mind. Once it dried, you could tell that it formed a seal over his wounds. But there was a problem...once you let his buttcheeks go back together, the heat from his body would kinda melt the stuff we had put on and his cheeks got stuck together. It wasn't glue, so you could pull it apart - but it was VERY sticky. I just don't know what else to do...

Gracie and I went to Virginia to see my sister and her daughter and go to the pool. The houses that we passed along the way were enormous. Gracie said that they were huge and that there must be very many people living in those houses. They were all about 10 times larger than ours. Gracie said that she liked our house better. Good, because it's not like we have $10 million to buy one of these. I hadn't been out to see my sisters house since she'd moved in. We had a quick visit there and then went to the pool. It was nice. Very much geared towards little kids. Then Gracie scraped her foot. She didn't swim much after that. Even with the bandaid on. She got back in the pool about 5 minutes before we were to leave. She was tired. (And very whiney.) She slept just a little bit on the way home. She wanted to rest after we got home. She was crabby and whiney for the rest of the night. We put her to bed at 8pm thinking she would fall asleep. Of course not. I went up after 9pm and she was still awake. She said she was cold. So I felt her head. She was burning up with fever. I gave her some medicine and layed down with her. I felt her head a couple of hours later and she was fine. I don't know what caused it. She has been complaining about her ears off and on. I need to get her to the doctor. I don't think its an infection though. Maybe it's from all the time she's spending in the pool. I got FRIED at the pool. I'm a wee bit miserable. But it's my own fault.

Sunday we went to the ballet. It was interesting. Nice though. Gracie started to complain about her ear at the 2nd intermission and I was going to take her home. I bought her a want for 50 cents and she said she wanted to go back into the ballet. She was fine the rest of the time. It was different from the Cinderella story she is familiar with so I had to keep explaining things to her. My sister and I thought it was funny that Cinderella and the Prince were both about 50 years old. But in good shape!

The times that I've been home, Kevin has spent most of the time on my lap watching a movie. His rash is still bad. We change his diapers as soon as he soils them, but it doesn't seem to make a difference. I've tried every cream there is - even the fungal ointment in case it was a yeast infection or baby jock itch or something. I need to tape his little cheeks open and put him on his belly for some much needed air. It's just not that easy. I sure hope this cast gets taken off tomorrow. Things will be so much easier. They still won't be great because of the arm splint. But at least we can put him back in his swing. Not the bouncy seat or exersaucer because of his arm and I wouldn't be able to get him out. That poor kid is so tired of laying around in that cast. I pray that he is healed enough.

Friday, August 5, 2005 6:29 AM

I had an idea this morning...Kevin's bottom is just terrible. It's been this way before, but we've been able to get it to heal. It's been this way for a few weeks. His bottom bleeds at times because it's so raw. We need something to seal out the wetness, but will allow him to heal underneath. Liquid Bandaid! I mentioned it to Nina and she said she uses something like that from 3M that works really well. So, we're going to get some and smear that on his hiney crack and see how it goes. We will have to put it on more than normal because he gets wiped so much, but I think it just might work. I'm excited about it. (It obviously doesn't take much to make me happy.) So keep your fingers crossed that this works!

He was a good boy last evening. He's "talking" a lot. Nina and I were discussing this morning that he's kinda yelling at you when he talks or telling you off. He gets a scowl on his brow and raises his voice. He also is learning to say "Nina". He seems to have stopped taking his evening naps. That's difficult because then I have a hard time getting dinner done. Mom and Dad came by last night to help. Poor Gracie is going to turn into a ravioli because she gets it so much! (But that's not what she had last night.)

I'm excited about the weekend and our plans. Hopefully nothing will sidetrack that. I'm also excited that I will be taking a day off of work on 8/15 for MYSELF!! I'm going to the racetrack and slot place in W.V. I hope I win BIG! Actually, I just hope I don't lose the money I take with me too early because then I'll be bored.

Well, I hope you all have a great weekend. I'll let you know on Monday how ours went!

Thursday, August 4, 2005 7:06 AM

Tuesday night we took the kids to the National Night Out which was right in front of Mom and Dad's house. It was humid, but I took Kevin down in the wagon and had a wet washcloth and plenty of water for him. He had a good time. He really liked being out and seeing all of those people. Judy was there and took him off my hands for most of the night. It was a nice break. Before we left I got a piece of cake. I showed it to Kevin and he reached out and swiped his hand across it and got a fistfull of icing. Then it went right into his mouth. He immediately started to gag. He was sorry he did that! They he started to pull his hair (with icing in his hand). Then he got it on Judy. We took him inside Mom's house and he finally threw up in there. He felt much better. I gave him water and he calmed down. He smelled like sugar until the next morning. I took him home a little later and he was asleep within 5 minutes. He was worn out. Gracie didn't eat while we were there and didn't play with the kids much. She gets shy sometimes. But we all had fun.

Not too much else is going on. I'm just a bit overwhelmed at home sometimes with the kids. I think I just need a little break. A week in the Bahama's would help. Saturday I'm taking Gracie to a pool in Virginia with my sister and her daughter for a few hours. Then we get to go to the ballet on Sunday to see Cinderella. I think she will really enjoy that. It will be a busy weekend for us. But it will be fun and I need a little fun right now.

Tuesday, August 2, 2005 12:30 PM

Well, we didn't have a nurse bother to show up on Sunday night. I was a bit annoyed because I had to work the next day - but Kevin was a good boy that night. I think I changed his diaper about 15 times. I see why he has a rash that won't go away because the nurses don't change him that much. I changed him as soon as he peed or poopied. It was a long night - but we got through it. I slept from 6:15am-7am and then went back to bed from 7:30am-9:30am. Then went to work. Monday wasn't a good evening for Chris and I. We were both tired and stressed. The nurse (Camille) that was supposed to work on Sunday came by the house at 5pm yesterday so I could sign her timesheet. I said, "Gee Camille, you're a little late." She looked at me like "huh?" I said, "We were expecting you at 8am last night." She told me that she wasn't scheduled to work and she had told the office that a couple of weeks ago and to have someone cover for her. Well, Chris called the nursing company and they told him that they did get in touch with Camille just that morning and she had told them that she had something personal going on Sunday and couldn't call them. Chris said, "That's not what she told us." So, the nursing company called her and confronted her with the lie. She got upset and said that she didn't tell me that and to take her off the schedule - she didn't want to work with us anymore. What the hell? These women say how much they care about Kevin but have no problem lying or dropping him in a second. Camille was an RN. She always said how concerned she was with the nursing help that we had been receiving - but she's just the same as all the others. She doesn't give a damn. What is up with these women??? This is so frustrating! Fine, let's move on to the next one....God help me.

Kevin has just been a peach all weekend. I can't even count how many times we have watched that new Wiggles tape. I think that I would kill those Wiggles guys if I ever got my hands on them because they drive me a little nuts - but I stop and think about the joy they have brought to Gracie and Kevin and how it's helped me get a minute of peace in the evenings. It's not so bad I guess.

So, the kids are both doing fine. Kevin's cast only has one more week! (I sure hope it's all healed.) We'll also get an updated x-ray on his arm to see how that's healing. Although his cast will be off his leg, we still won't be able to put him in his bouncer or exersaucer because of his arm! I've had nightmares about Child Protective Services coming to take him from us because of the broken bones. I dreamt they took him and sent him to Mt. Washington Rehab Center. I was so upset because nobody there knew how to take care of him or what he liked. He's not an itty bitty baby anymore - he knows when Mommy and Daddy aren't around. It would affect him just as much as it would affect us. Gosh - I'm getting upset just thinking about it! But that won't happen. God won't let something like that happen.

Well, I have to run - I'm doing this on my lunch break and I need to get back to work. If anyone has Mary Poppins phone number - send it my way - I need someone to watch Kevin.

Friday, July 29, 2005 6:34 AM

Kevin stinks. Really bad. I just haven't been able to give him a good thorough cleaning because of the cast and arm splint. I can hardly wait until everything has been taken off of him and he can go for a dip in the sink. I don't know if he will ever get into the tub again. He won't if he keeps that central line in. Ah well - I'll just concentrate on getting him in the sink for now - that'll be our first milestone.

We got a new Wiggles tape! It doesn't drive me crazy and it's all music so I don't have to fast-forward it through the skits. Gracie, Kevin and I watched it twice last night. We also have the new Baby Einstein which Kevin doesn't really care for because there isn't much music. But Gracie likes it because she is learning some sign languarge. So am I. We've learned about 20 words.

Nina took the kids to the park yesterday - twice. Then I took them once and then Gracie was going to ask her Dad to take her but he got home too late from work. Three times was enough I think. On the way a mosquito landed on her arm. She said, "Momma, there is a bug on my arm." I told her to smack it off. She did. It bled because it had already bitten her. But she said, "Oh, I made it bleed! I killed it!" I told her it was her blood and not the bugs. She was fine with that. Her last day of ballet is tomorrow. I get to watch her recital. It'll be fun. I won't take Kevin this time - it's just too difficult. He can watch her dance around at home and be just as entertained. We don't have any major plans for the weekend. We DEFINITELY won't be going to see a movie! That just gave me an idea...Chris can go to Gracie's recital and I can go see the movie I wanted to see last weekend - alone! I'll have to run that idea past him and see what he says....

Have a great weekend everyone.

Wednesday, July 27, 2005 7:14 AM

Kevin has been doing OK. I think he's a little fed up with the broken arm and leg. He's cranky. I would be too I guess. He did develop more wounds on his hip and thigh because the nurses don't seem to understand how to put his diaper on. Even though they have been shown many times. Chris and I took Kevin to Hopkins yesterday afternoon. We wanted them to cut away the icky, wet part of the cast so Kevin's wounds could heal. Chris and I had put Duoderm on his hip and leg, but couldn't get to all the areas we needed because we couldn't reach. Chris and I both had to take leave from work. Kevin said "ma-ma" while we were in the waiting area!! (He said it again last night.) Once we got back into the cast room, the 2 cast guys came in. They said that there was nothing they could do and they couldn't cut the cast in that area because it would ruin the cast and he can't get a new cast. One guy said that it's just a fact that poo and pee get in these types of casts and you just have to live with it. I said, "Are you telling me that my child is going to have to go another 2 weeks with these sores on him!?" Chris walked away at that point because he didn't want to be there for the bloodshed I guess. The cast guy said, "Uh, we'll see what we can do." I thought - there is no way that we missed work, brought Kevin out in this heat just for them to blow us off! The duoderm that Chris and I had put on had already let his skin start to heal. But, like I said, we needed to get it further down on his leg. So, they cut just a little bit of the cast away so we could reach in there. We were there a little less than an hour. After we got home, Nina helped me put more duoderm on Kevin's thigh and I also stuck some inside the cast. I think he felt much better afterwards. I have told the nurses that the diaper has to be put on right because we have 2 more weeks and we can't affor for that to happen anymore. It doesn't have to happen. So, we'll see what happens. I will be so damn happy when he gets that cast off! But then we still have to deal with the broken arm. Kevin hates not being able to use his arm. We changed his dosing of Vitamin D about a week ago. He is getting more and it is concentrated differently, so hopefully his body will absorb it better. I was told that the liver does eventually get to a point that it won't absorb vitamins anymore. Let's hope that's not the case for Kevin. Lisa Boyd had also written in his guestbook about getting him in the sun. I did ask about that and they said it may help, but we have to wait until it's not so stinking hot outside. Plus we need to make sure he doesn't get burned or is uncomfortable from the heat. He sweats so easily. Thanks for the idea Lisa. We will definitely try it when we get the chance.

Monday, July 25, 2005 7:20 AM CDT

Friday didn't go too bad for us. They took pictures of Kevin's leg and decided not to take the cast off for another 2 1/2 weeks. His leg is healing, but very slowly. They also decided not to put a cast on his arm. The doctor said it was fine being splinted and would heal fine that way. But we have no idea how long it will take. I'm guessing it will take longer than his leg because the break is worse. Kevin did just fine the entire time.

We had a day nurse for Saturday so we slept in. It was her 3rd time there and I was comfortable with her. So it was 6am for Chris and almost 8am for me and Gracie when we got up. I don't know why Chris gets up so darn early. I asked Gracie if she wanted to see a movie or go to ballet - she got to pick. She wanted to see a movie. She has never gone to a theater before and I haven't been since before I was pregnant with Kevin. We invited my sister and her 3 boys to go with us. When Gracie got into the theater you should have seen her face. She had a permanent smile and she was so excited. We went to see "Charlie and the Chocolate Factory". Unfortunately, we only stayed long enough to see them go into the chocolate factory. Gracie had a small cut on her finger and salt got in to it from the popcorn. She started to scream and cry. I cleaned it with water - it didn't work. She was freaking out and she wanted to go home. So we left. Luckily my sister met us there so they could stay and watch the rest of the movie. I was pretty upset with Gracie acting like that. I was really looking forward to getting out to see a movie. On the way home she finally stopped crying and said, "I'm sorry Mommy." I told her I wasn't taking her to another movie and she said it was OK, she will watch a video instead.

Kevin was cranky on Saturday. We also didn't have a nurse for Saturday night. I had called the nursing company on Friday and left a message asking that we have our regular 10 hours on Saturday night ad 9 hours on Sunday night since we don't have anyone working on Sunday during the day. We get a certain amount of hours for the weekend. If they don't have anyone to cover for the daytime, I want my regular hours back for the evening. But, they didn't call me back until Saturday early evening. The woman told me that the nurse who was supposed to work hadn't renewed her nursing certification and was taken off the job. The people in the office took her off the job, but didn't bother to tell the woman who does the scheduling. If she hadn't called the nurse to ask about working 10 hours that night, we wouldn't have had any notice and nobody would have come. Nobody came anyways - but at least we were aware of it. Chris and I split the night. I stayed up until 3am and then Chris took over. I had to come down to help him at 6am because Kevin made a mess when he was getting his diaper changed. A big mess. We got him cleaned and settled and he went back to sleep. So did I. For another hour. So, Chris and I were a little sleepy yesterday.

Chris' mother and brother came for a couple of hours. Gracie was in her pool the entire visit. Then she got in the hot tub for another couple of hours. She didn't take a nap, until dinnertime. She fell asleep at the kitchen table for a few minutes. It was cute. But it re-energized her. Kevin's attitude got better on Sunday. But something was hurting him when we changed his diaper. It's his skin underneath. Chris and I looked in his cast using a flashlight last night and his skin is all red and raw underneath at his hip again. His diapers haven't been put on properly by the nurses. That's going to stop. We bought size 4 diapers for him so they fit inside the cast easier. I have told all of the nurses that the diaper is to be put on properly INSIDE the cast so it doesn't get any poop and pee inside it anymore. But the problem is that it is already messy and it's hurting him. (And he smells like a sewer.) I put a special tape on his leg to protect it, but I couldn't get the tape down his leg far enough. I also stuck some cotton in there. If he doesn't feel any better by tomorrow, I will see about getting that part of the cast re-done. I think they may give us a hard time about it. But I guess I have to just suck that up and take it because we need to do what's best for Kevin. They can say whatever they want. Actually, I have to call today to make his appointment for 2 1/2 weeks, so maybe they will let us come in as soon as tomorrow. It can't hurt to ask right? I think the doctor is a little arrogant. Oh, I almost forgot...he told me that a doctor did come in last time we were there to tell us the x-rays were fine and we were done. (Remember when me and my dad stayed until 5:30pm waiting for someone?) I told him that nobody came in. If they had, I wouldn't have stayed there waiting. He said, "Well, the doctor said he did so..." His word against mine I guess. But that irritated me because the doctor made it seem like I was lying. Why would I do that? I have no reason to. I think my blood pressure is going up right now - I need to let that go. (But that's easier said than done.)

I hope you all have a great day. Please pray that our little boy starts to feel better.

Friday, July 22, 2005 7:39 AM

Yesterday afternoon Nina called me at work. She said that Kevin wasn't moving his left arm. The Infants and Toddlers people were out at noon and had even written in their report that he wasn't moving his arm. But the nurse never said anything to Nina or called me. He screamed in pain when he was picked up. I called the day nurse on her cell phone to ask her about it. She said that he didn't move his arm all day. So why in the hell didn't she call me or say something?? Nina, Gracie and I took Kevin to Nighttime Pediatrics for x-rays. His arm is broken. It's the top part of his upper arm. It's snapped in two. I'm angry that it happened. I'm angry that the nurse didn't bother to say anything about it. I'm angry that he was in pain all day because of that and I'm angry that he has to go through even more discomfort. It's a crappy life for him. It's hell. I want him to be comfortable - and he's not. Hardly ever.

They put it in a splint until we can get it casted today. They had also put his little arm in a sling. That didn't help. Shortly after we got him home I took the sling off and we wrapped his body with an ace bandage so his arm is held down tight to his side and won't move. He's on Motrin around the clock. I have stronger stuff - but I don't want to give him that.

Then I broke. I just started to cry, and cry, and cry. I guess I just reached my limit. Oh, I'm better now. It didn't last too long. It helped that Gracie was consoling me. She brought me tissues and wiped my tears. She asked me why I was sad. I didn't respond because I was crying and she asked, "Is it because my brother is sick? He will be OK mommy." Then she kept hugging me, kissing me and stroked my face. She told me that I would feel better once I came to bed and layed with her. Chris took her up eventually while I got Kevin settled and talked to the night nurse. Nikki said that she didn't have any problems with him and if she noticed something she would have told us. I was exhausted. My eyes were burning because I was so tired. At 10pm I was getting ready to say goodnight to Kevin and he threw up his feeding tube. Crap. I didn't get upset - I was too tired for that. I just started to gather up the supplies I needed to put a new tube in. I was in bed within 25 minutes. And asleep within 5 minutes after that.

This morning I spoke to Abi, the day nurse. I wanted to wring her neck, but I calmly told her that I was upset that he went all day yesterday with a broken arm and she didn't even call me. That was something very important. He was in pain all day and she didn't call or say anything about it. Then I told her to call me for ANYTHING and she understood. Then I left for work. I didn't bother to wear make up today. I've cried twice since I've been here.

I called Dr. Ain's office to see what paperwork we needed to get approval for Kevin's arm to be treated there. His secretary said she would handle it. We were supposed to be there at 3pm, but now they want us there at 2pm because of the arm cast needing to be put on.

I'm a little bummed, but I'm not nearly as bad as I was last night. When I get like that, I don't really want to be consoled. It doesn't seem to help me. I just rather sit there and get through it. I just start thinking of positive things about our situation. I thought that the spica cast is coming off so he will be easier to hold. It was on for 5 weeks, but it went by fast and we all adjusted to it quickly. This will go fast too. At least with an arm cast he won't get poop and pee inside it (and least I don't think so.) It could be worse. I always remind myself of that. It could be much worse.

There is a person that I deal with every day at work and whenever I speak to him I ask how he's doing. He always hems and haws like he has a crappy life. I spoke to him the other day and he was on his way to a funeral. I reminded him that it could be worse. It wasn't him in that casket. He needed to think about the positives in his life rather than all the negatives. There are even positives for the person in the casket. They were better off now and in a better place. I told him that as bad as Chris and I have it - we know it could be worse and we don't dwell on the bad stuff. That would be a miserable way to live life. I get depressed sometimes, but I don't stay that way. I can't.

I want everyone to have a great weekend. Think of all your blessings and be happy. I do every day. Take care.

Thursday, July 21, 2005 8:57 AM

Kevin had another good evening last night. He watched Gracie swim with Judy and he played the slot machine. He started to get really fussy right before we left Judy's because he pooped. He hates to be in a dirty diaper. He cried all the way home. I was pulling him in his wagon and he was like a siren going off. As soon as I took that icky diaper off - he stopped crying.

Infants and Toddlers comes to the house today at noon to see him. I spoke to them last night and they are going to work with him on communication. They think he is to the point that he can communicate in other ways, if not ready for words yet. She asked me to leave pictures of the family there for her and she was going to put together a little book for him. I guess to point to pictures. I'm excited about it. He catches on quickly. I blew him a kiss last night and he did it back. Well, he did the hand gesture, but didn't blow the kiss. It was better than nothing.

One more day for that darned cast!!

Wednesday, July 20, 2005 12:22 PM CDT

Kevin is still doing good. I wanted to get him out of the house last night so I took him and Gracie to Judy's house to visit. Gracie got Judy to take her in the pool. Kevin and I watched for a few minutes, but it's just too hot for him, especially with a cast on. So, we went inside and he learned how to play a slot machine. No kidding, he actually figured out which button makes the max bet and spins the wheels. Plus Judy has a HUGE television and he liked that. So, Kevin and I hung out in her living room while her and Gracie swam. He enjoyed getting out of our living room. I try to make it as much fun as possible at home - but he gets bored. I think we'll head to her house again tonight. I just plop him in the wagon and wheel him down the street. Maybe I can talk Chris in to taking us to the mall this Sunday. We'll see.

Kevin's got two new tricks. He can give high-five (I may have already told you that), and he can now shake his head "no". He used to shake his head "yes" for everything. He's been in a really good mood these last 2 days. He's a totally different kid than he was over the weekend. We are all ready for that nasty, stinky cast to come off on Friday. The nurses haven't been doing such a good job with the diapers and poo and pee made it's way into the cast again. It's not nearly as bad as it was - but it's gross and uncomfortable for him. It would really suck if we got there and the x-rays showed that it isn't ready to come off yet. When it does come off, I'm taking him straight home and putting him in the tubby (kitchen sink). Plus I'll take him to Judy's to get in the pool a little bit. I just have to figure out how to keep his central line and feeding tube from getting wet. I'll think of something....

Tuesday, July 19, 2005 7:14 AM

Sorry about that folks. It's been hectic for me recently. Kevin is doing MUCH better. I was worried that I was going to have to take him to the hospital this past weekend. He was cranky and miserable. It was very frustrating. We had a new night nurse (she was good). But with a new nurse, he doesn't do too well and neither do I. So I was very tired on top of having a cranky baby. I kept taking his temperature, but there was no fever. I was thinking that his infection was coming back. He had stopped his antibiotics last Friday. It was supposed to be a 14 day course - but he got 17 1/2 days (which was fine with me.) That course should have knocked the infection out. Gracie was at Judy's house late afternoon Sunday. She brought her home for splinter removal and was going to take her back to swim some more. I disconnected Kevin and took him in the wagon down to her house for a little while. He was fine. No crying. No fussing. No problems at all. I think he just wanted to get out of the house! He had worn me out. We had no nursing help on Sunday. That nursing company just can't seem to get us staffed. But we are almost fully staffed. I'm thinking about going to see a movie this weekend. I don't think I've seen one since Kevin's been born. I'm debating on whether or not to take Gracie. Movie theaters have loud volume and it may hurt her ears. She hates anything loud. I don't want to pay for her just to have her start screaming about the noise and wanting to leave. We'll see.

I've got to run. Take care!

Monday, July 18, 2005 6:48 AM CDT

Kevin's weekend wasn't all that wonderful. I don't have time to update now - but I will later when I get a chance. He is home and things are OK - don't worry.

Thursday, July 14, 2005 1:49 PM

Kevin has been keeping me full. He is constantly shoving that plastic waffle and hunk of peas in my face. We lost the corn and chicken leg. He's also in to "The Wiggles". But, he doesn't like thier sketches - he only likes the songs. So I have a tape and I just keep fast forwarding through the sketches and let him watch and listen to the songs. I'm not quite ready to blow my brains out - but I think I'm getting close. It's funny to watch him. He sits on my knee and watches the TV and smiles randomly. It tickles me to watch him.

Judy is watching him tonight so Chris and I can take Gracie out to dinner. She already requested a place with a slide. I'm going to try to talk her out of that. We can still go someplace with games, like Fuddruckers. But I don't want fast food. We hardly ever go out - when I do get out, I don't want fast food. But I guess it's to please her also. We'll see.

I am also taking Gracie to Polliwog camp tomorrow. It's her last day. It's "Creek Exploration Day". I think her Pop is going too. It's rain or shine so we'll see how miserable I get. It should be fun. I'll stop complaining about it.

Wish us luck!

Wednesday, July 13, 2005 8:37 AM

Kevin seemed to cry a lot last night. (I'm tired.) But it was an annoyance cry, not a pain cry. I was worried that something was wrong and he may be getting sick or not feeling well. But I just called the nurse and she said he has been fine for her so far today. I told her I would call later to check again. I hope he stays well and isn't too fussy. That can really wear on you. Especially if you have him all day and he's like that. Other than that, he's doing fine. His last dose of antibiotics is Thursday morning. That would be a little over 14 days of antibiotics. It should have knocked that line infection out of him.

Gracie had another swimming lesson at Judy's house last night. She is now swimming under water and will stand on the bottom of the pool and look up from under the water and she will dive for things on the bottom step of the pool (the bottom of the pool is too deep - for now.) I told Judy I want to come watch her and get it on video. I'm proud of her soming so far in such a short time. She got home a little before 9pm. I thought she would be exhausted. Plus she didn't have a nap that day. And she played in her own pool before going to Judy's. After the nurse got there, I had a few chores to do. So Gracie was upstairs with her father. By the time I got up there she was watching the baseball all stars game and still awake! I thought she would be asleep and I would get to sneak in a bath for myself. Not happening.

So, things have been a little uneventful the last couple of days - but that's a good thing. We like uneventful! Take care everyone!

Tuesday, July 12, 2005 6:28 AM

Kevin has been having really good days. I was worried that his ribs may be broken again from getting the new cast on, but he's not crying hardly at all so maybe it wasn't that afterall. I'll keep a close eye on him.

He's full of smiles lately and just being all around happy. He sat on my lap by the deck door to watch Gracie swim in her pool last night. He keeps waving at her. He really likes it when she uses her Barbie's head to wash the sliding glass door. Gracie just started to hold her breath under water about a week ago and now she's swimming under water. She's been learning from Judy in her pool. She's come a long way fast.

I called to make his appointment to have the cast removed. It will be in 2 weeks, Friday, 7/22 at 3pm. I tried to get another day because Friday is hectic with Baltimore traffic - but the doctor only has clinic on Friday's. Then I asked if the doctor had to be there. He has to look at the x-rays. (So what - we aren't even sure he looked at the last one's since nobody ever came back to speak to us!) I told his secretary about last Friday's incident. She said she would tell the doctor, but she wanted me to call the clinic manager. I did. I told her about it and she apologized. She asked exactly where we were in the cast room because she checks before she leaves each day. She left at 5:15pm that day. I told her she didn't check very well and I didn't see her peek her head in the door because I would have said something to her. I told her the nurses name and everything. I think something will be said to those people. Then she asked about the paperwork and where it was left. She's lucky we didn't take it. But I'm not that evil. Well, sometimes.

The nurse seems to be working out OK. Nina said that she notices that the nurse interacts with Kevin more than the other 2 nurses did. We appreciate that. That's very important. He's really good with sharing too. He plays with plastic playfood. His favorites are a chicken leg, an ear of corn, a waffle and a clump of peas. He chews on them and then puts it to my mouth when I ask for a bite. Then he keeps on sharing and constantly sticks it in my face. He's adorable.

His GI nurse sent me an e-mail about some new doses of medications for him because of low vitamin levels in his blood. The one that gets me is his vitamin D. They are switching him over to gelcaps. Gelcaps? How do I give a baby a gelcap? But it gets better...they want him to have 1/2 a gelcap in the a.m. and the other half in the p.m. That's even worse. Nina said to just cut off the tip of the cap and put the contents into a syringe and give 1/2 at a time. Sounds easy enough - but we'll see. The adventures never end. Speaking of adventures, I told Chris that I want to take Gracie and Kevin to an art place where the kids make their own things. I think it's called "Made By You" or something like that. That should be very interesting (and stressful). It'll be worth it in the end.

I know I owe pictures to some of you - they're coming (Aunt Mary and the nurses on the 6th floor). I just got the new batch in a couple of days ago. They are still sitting on the stairs at home. I still need to get the pics up on this site.

Take care and have a great day everyone!

Monday, July 11, 2005 6:31 AM

Firday Dad and I took Kevin back to JHU to see if we could get help with the cast. Kevin was very sore at his left hip and thigh. We got there late. The BW parkway was shut down so everyone hopped on 95. It took us about 1 1/2 hours. We were only 30 minutes late. We got there and they put us in the cast room. (Same as last time.) The cast guy came in and cut away the cast on his inner thigh. Kevin's skin was dying inside. The doctor said he didn't want the cast changed just yet. But they cast guy looked at it again and went back to the doctor again. The doctor came in with 2 interns and told the guy he could change it since there was help there for him. They took the old cast off, and revealed the wounds Kevin had. His back was bleeding in one spot and his hip and thigh were just disgusting. I had time to wash Kevin up and get all of the dead, flaking skin off of his wounds. His was kicking with his broken leg - so it must be getting better. Kevin didn't cry when I was washing him. He liked having that thing off of him and I'm sure the bath felt great. Then they put a new one on him. They did a better job this time. His entire right leg is out of the cast (before it was to his knee.) And the left foot is totally out so he can move it (before it was to his toes.) And the cast around his waist has plenty of room - it's not too tight. Then after his cast was put on, they told me to go across the hall to get some x-rays. After the x-rays, they kept Kevin and I sitting there so they could show the doctor the x-rays. After 10 minutes my back was really hurting. I was holding Kevin while wearing a lead apron. They said I could go wait back across the hall to be more comfortable. Kevin did so well. He was in a super-good mood. We waited. And waited. And waited. They closed and left the 3 of us there - waiting! I had gotten up and looked around the place and it was empty. I was pissed. They had left our paperwork in the room with us. Dad grabbed our copy and we walked out. We were there 45 minutes after I had gotten back in to that cast room. I told Dad that we should have taken both copies of the paperwork so they couldn't bill me. Or at least caused them a little grief trying to figure it all out. I have to call the doctor's secretary today to make an appointment for 2 weeks to get the cast removed. I'm going to tell her about it and hopefully she will tell the doctor what happened. I'm not so sure he'll care.

Saturday was ballet for Gracie. She's getting so much better with her coordination because of these classes. We also had a new nurse on Saturday. Her name was Boomi. She was very good with Kevin. She will be working every Saturday. The only coverage we don't have is Sunday's. But that's no biggie. At least we have some help. I'm so excited. I have so many things I want to do now that I have someone to help watch him.

Abi started today full time with Kevin. This morning I was a little unsettled when I saw that she drew up 2cc's of Kevin's methadone, rather than .2cc's. That definitely would have stopped his breathing. But she said that she always double checks when she is done - so she would have caught it. Sorry, that didn't make me feel any better. Hospice comes this morning to draw labs. I have to run an errand at lunchtime and then go home so I will check on her then. Why is my stomach upset? He'll be fine. I told her to be careful with him because I think they hurt his ribs when they were putting on the new cast. I'll have to take him for x-rays this week. I think more may be broken. Just his luck.

Well, I have to run. I hope everyone has a wonderful day!

Friday, July 8, 2005 6:52 AM

The nurse left early yesterday because her baby had a fever. So luckily Nina could take over for her. When I got home Nina told me that the nurse had said she would be out the next day (today). I called the nursing company and she hadn't told them. So they called her. When she returned their call 2 hours later, she said she wanted to be off to stay at home today. She was told yesterday afternoon that he taking off so much was affecting my job. I guess that didn't really matter to her since she's off again today. I understand needing to be with your child when they're sick. But if it's nothing really major, you find alternatives. Unfortunately, I've had to do it with Kevin. Starting next week, Abi will be his new nurse Monday through Friday. She was on her last case for 5 years until the child no longer required nursing assistance. Hopefully she'll work out for us.

I had an incident with the nurse yesterday morning with his methadone that totally frustrated me so I'm glad she's not going to be back. She drew up too much. I told her it was too much in the syringe. She looked at it. Then gave it all to him! Then she said it was my fault and I should have stopped her. I didn't know she was giving him an 8am medication at 7:15am - I thought it was one that he was due. It's pissing me off just thinking about it - I'll stop.

Kevin is still having issues with his cast. It hurts on his upper left thigh. He still screams when you change his diaper. We've been putting cornstarch in there, but it doesn't help his pain. I can see that the upper thigh area was also affected and has a wound. But that's the leg that's broken. I don't think they can take that part of his cast off to get air to the wound. But, they should be able to change it so the inside will be dry on his skin. I'll call them this morning to see if I can bring him in. I'll see if my dad is available to go with us.

Kevin did well last night - until 5am. He started to throw up a lot. He's been doing so well with that lately. I held him this morning for a little bit. He looked me straight in the eyes....smiled...then smacked me square in the middle of my face! Then he started to pull my hair - so I gave him to Nina. She's teaching him how to give a high five. I tell ya, he's little - but he is strong. He hits hard and pinches hard and pulls the sensitive hairs close to your neck. The ones that make your eyes water. I tell him he's a little bully.

By the way, I still have some pictures to send out - I'm trying to get addresses. There were 3 wallet pictures we received. One with Gracie and Kevin together, one was a close up of Kevin and one was him with his tongue sticking out. I couldn't give everyone all 3 pictures because I didn't have enough. Most of you received the one with both kids - because I had more of those. I have now received 36 more pictures of the ones only with Kevin in them. If you are interested in getting one, let me know and I'll send it out. If you already received one, let me know which one you need. You have to tell me - don't leave me with all these pictures and nothing to do with them! We will also be getting the picture on this main page replaced with a new one and the others will be posted on the picture page - when we get a chance. I also need to take a picture of his cast wound - but I don't have a battery for my camera.

We hope everyone has a great weekend! Hopefully we can get Kevin back to the hospital today and get him comfortable. Take care.

Wednesday, July 6, 2005 7:19 AM

I have no nurse today - so nurse Nina is covering until 1pm, and then Daddy has to come home to take over. I just can't afford to miss any more work right now.

I had left another message yesterday morning with the orthopaedic doctor. His secretary called me at 10am and told me the doctor was out of town, but she gave him my message and he instructed her to have us come in and his back up would see Kevin. His back up was in the OR all morning and we would be his first appointment at 2pm. We got there and had x-rays taken. His leg is healing - but will need 2 more weeks in the cast. The put Kevin on his belly and cut out the lower part of the cast that went across his back (right above his hiney). His skin was a red-purple color. So they took off the rest of the back because they didn't know how far up the wound went. The inside of the cast they took off was green and rotting. The wound on Kevin's back is about 4 inches, top to bottom and goes from the top of his thigh, up across his back and down the other thigh. It's nasty and hurts him like hell. They recasted across the top of his cast where he didn't have a wound. I wanted to cry when I saw what it had done to Kevin. Then I got angry that I couldn't get any help sooner. Now I feel like I didn't fight hard enough for him. I wish I knew the name of that doctor in Shady Grove that wouldn't help him. He'd hear from me.

But since that part of the cast is off, Kevin is feeling better. He still hurts - but not as bad. We don't know what will happen to that skin. It may peel off. I've never seen anything like it. The doctor said he was glad we brought him in. Other people who worker there were coming in looking at it. We were told they have seen worse - but Kevin's was pretty bad. And it would have gotten worse with each day I'm sure.

Well, he's home and more comfortable. We can handle 2 more weeks. As soon as he's out of that cast he's going to get a nice long bath. And maybe a dip in the pool for fun.

I've got to run - take care!

Tuesday, July 5, 2005 7:02 AM

Sorry everybody - we have been so busy at home. Kevin was in the local hospital from Monday evening to Thursday afternoon. Unfotunately, while in the hospital on Tuesday, I asked the nurse to watch him so I could go grab lunch. She didn't put his diaper on correctly and poop and pee got up the back of his cast. All the way to the top. He smelled like a Porta-potty. He still does. Before we were discharged from there, I asked them to change the cast. The orthopaedic doctor requested for x-rays. Kevin hated that and they didn't come out well. The doctor came in to see us and told me that casts don't get changed just because they are stinky. Stinky is one thing - this could get Kevin sick. It was wet inside and there was no way to dry it - (IT STILL ISN'T DRY!) He said to wipe it with a baby wipe or use a blow dryer. That won't help - the cast is too tight. So, I pushed for the new cast. He said he couldn't do it because he wasn't familiar with Kevin's medications. "What do his medications have to do with his cast?" Then he told me that Kevin would have to go to the OR and get put to sleep for a new cast. "Why? He didn't have to for the cast he has on now." Then he walked out of the room. He came back in and told me that he doesn't take our health insurance and he couldn't help me. "Fine - thanks." Then the guy walked back in the room and told me that he decided not to charge me. I didn't look at him and I just said, "Oh, thanks." I wanted to ask, "What the hell for you jerk?" So, Kevin went home with a stinky, wet cast. He's doing well at home. He gets his antibiotics twice a day through his IV. Hospice has come to pull blood samples to make sure he isn't getting too much antibiotics - it could be toxic. So they test him once a week. They are coming again this morning.

We have been trying our best with Kevin's diaper changes - but he started to get raw in the back where it was wet. Then he started to bleed. He has a wound that goes from hip to hip across his lower back. That's all I can see - it may go up further on his back. Chris and I took him to Montgomery General Hospital on Saturday (or Sunday - I can't remember.) I called them first and told them the problem. I asked if they had pediatric orthopaedic doctors there - they told me they did. So, we took him in. There were a lot of people in the waiting room. But having a kid like Kevin gets you in right away. It's like being seated priority at a restaurant. They started to take his blood pressure and temperature and examine him. He was pissed. I told the doctor we needed his cast changed and she told me they couldn't do that there. WHAT?? She said we would need to go back to JHH. I told them to stop. Stop examining him if you can't help us. They were just making him angry and wasting our time. She said, "Well at least let me look at him and call JHH for you." She did. She told me to call JHH and make an appointment for next week. I've already done that!! What a waste of time! And I have to pay for that! I told the financial person that we shouldn't have to pay and she agreed. We'll see what happends. I'm definitely going to fight that.

I called last Friday for an appointment for this week. The secretary wasn't in so I had to leave a message for her to call me today. I'll call her shortly. I'm going to try to get an appointment for tomorrow. Or this afternoon. If they don't have any openings, I will take him to the emergency room at JHH. He can't go on like this - it must be changed.

I've got to run - I have so much to catch up on. Take care and I'll let you know what happens with this chapter.

Tuesday, June 28, 2005 11:21 AM CDT

Hi everyone! Sorry for the delay in updating. Kevin was kinda irritable and cranky yesterday. He had a fever and was drinking/craving water. ALOT of water, the little piggy drank 9oz. He is drinking very well from a premie bottle. And he has no problem letting you know when he wants more.

Karen came home from work and it was off to Shady Grove to see if they would do some blood work to confirm what Karen and Chris thought was an infection.

They did the blood work and a chest x-ray. His white blood cell count was high - 22 which signifies an infection. His chest x-ray was clear. Karen got Johns Hopkins on the phone, she did not want to have to go back to Baltimore. They said it was OK to admit him at Shady Grove to get his antibiotics started until she could arrange for home IV antibiotics. But they wanted her to watch for other symptoms that would show cause for him to be transported back to Hopkins. His culture they did from his central line has not grown any bacteria. His temperature finally came down from 102 degrees from yesterday. Karen stayed with him all night.

She has arranged for his IV antibiotics at home and should be home this evening.

I went by the ER yesterday on my way home to see him. He was in such a good mood. He did some of his tricks for me. We played for a while and then he fell asleep.

Karen will probably have an update for you tomorrow sometime. If not, I'll try to get on and give a quick one.

Have a great day, everyone!

Aunt Theresa

Monday, June 27, 2005 8:26 AM

Friday we went to Baltimore for his GI check up with Dr. Schwarz. She said that he's getting chunky! They have cut back on his calories because they don't want him to grow too quickly due to his heart condition. He is back up to 21 pounds and has gained back all of the weight he lost from his heart surgery. We took the x-rays with us from the pediatric place to show her his ribs. I told her that he wasn't moving his left leg and that I thought it was because it hurt his ribs to move it. She said that his leg could be broken or have a problem with his hip and told us to go to the ER when we were finished with his appointment with her. I thought that we would go get some x-rays, see that he was OK and then go home. Not so. Kevin's femur is broken. He is in a spica cast which goes from his waist down to his toes on the left side and down to his knee on the right side. It's not a through and through break - only a partial. He will be in this cast for at least 4 weeks. They can't say because he may heal slower due to his liver issues. They also said he may have to have it changed once or twice before it's all over with. They get dirty. We are doing our best. I bought newborn size diapers and cut the velcro out of them. We turn him on his side and put the diaper on backwards and shove it up into the cast. Then we flip him back over and shove the rest up in to the front of the cast. Then we put on a size 6 diaper over the cast. Kevin doesn't seem to mind. At least he isn't in pain anymore when you move him. He's extremely hard to hold. But we're getting used to it. He can't sit straight up. He can sit in his little toddler rocker chair with some support under his back. And I prop him up on the sofa on pillows so he is sitting reclined. He had a really good day yesterday - I was very proud of him. He had adjusted so well to this. There is lots more to tell you all about his weekend, but I just don't have the time today. I'll write more in the morning!

Thursday, June 23, 2005 7:11 AM

Kevin had a babysitter last night while Chris and I took Gracie to dinner. Judy came up to watch him. They had lots of fun. Unfortunately, I didn't feel so hot at dinnertime. I couldn't eat my dinner. It must have been something I ate for lunch. I had told Gracie earlier that afternoon that we would be going out to dinner. She said she wanted to go someplace with a slide. Then she added that her Daddy would probably want to also go someplace with a slide and he would like that. I told her we would probably go someplace a little nicer. She said, "Oh, you mean a restaurant?" We went to Fuddruckers. They have a few games there for her to play. She was well behaved - until it was time to go. That's OK, we'll do it again another day. It was nice to get out.

Kevin didn't get sick at all during the night. I think he only threw up 3 or 4 times yesterday. He still isn't moving his left leg at all. But he is definitely feeling better. He still cried out - but not as much. Not at all if you are really careful. He needs another tubby today - he smells yucky - just like his dad (smile). He gets sweaty and smells like a little boy.

We go to the doctors tomorrow for GI. It's an early appointment, but we always have to wait a long time before we are seen. Sometimes hours. He has to get x-rays taken (which insurance won't pay for) and he gets blood drawn tomorrow (insurance won't pay for that either). We have to go other places according to our insurance policy. But that's too inconvenient for Kevin. I'm going to see if Medicaid will pay for it this time rather than pay ourselves. Can't hurt to ask.

I forgot to tell you all - we got additional hours for the weekends! 6 extra hours for each day. The nursing company said that they won't be able to get someone for a 6 hour shift and we would have to split it into 2 8 hour shift (we already get 10 hours.) Chris and I were getting frustrated talking about it last night. We currently have 9pm to 7am (10 hours.) If they want to split it, it would be 9pm to 5am and 5am to 1pm. Who wants to work at 5am on a weekend? I asked for our current night hours and then 10am to 4pm. I would work 10am to 4pm! We also have a new person taking over weekend nights (every other weekend.) She comes Friday night for orientation. I sure hope she doesn't suck. And I hope Kevin likes her. This will be her first weekend. I'm sure it won't go too well because Kevin doesn't know her. (Sigh...)

I've got to go. I won't be updating tomorrow morning because we have to leave the house early and it takes me an hour to pack up Kevin's stuff for the trip to Baltimore. Heck, it takes an hour to pack him up for a trip down the street! Have a great weekend!

Wednesday, June 22, 2005 6:33 AM

Kevin did well overnight last night. He only threw up once and it was very small. I keep his dirty clothes in a hamper on the bottom landing of the steps since he's kept downstairs. (No point in taking his clothes upstairs just to bring them back down 2 floor to wash them.) Anyways, that is the first thing I look at each morning. The laundry hamper. I check to see how many outfits, cloth diapers and blankets he went through. Sometimes I see a couple, sometimes the hamper overflows. But when I came down this morning and saw the exact same clothes on top that were there last night - I was extremely happy. (It doesn't take much to please me.) Even though he had a bad night the night before, his day wasn't too bad. He threw up once for the nurse, once for Nina and once for me. Nina and I also gave him a tubby. He really needed one. It wasn't too bad. He cried, but then settled down. Nina held him in a reclining position while I washed him real quick. And he really hated getting dressed afterwards. I wish he would hurry up and heal. I like to hold him in the mornings before I leave for work, but I can't because it hurts him too bad. I also like to have him over my shoulder and walk around with him to get things done around the house - but I can't do that either.

While he was playing yesterday, sitting in his little toddler chair, it was noticeable that he would play and kick with his right leg. He wouldn't move his left leg at all because of the pain it causes.

Gracie and I had a tubby together last night. We had fun. She can get pretty rough. Afterwards I rubbed lavendar lotion all over her and she got dressed in her jammies. Her daddy came in to give her a kiss goodnight and told her that she smelled beautiful. She siad, "Thanks, you smell...(sniff)...yucky." I cracked up! She kept laughing because I was laughing so hard. Chris just smiled and walked out of the room. (It was cigarette smell that was yucky.) Well, I've got to run. Have a great day!

Tuesday, June 21, 2005 6:32 AM

I can't say that Kevin is feeling any better. He still cried out when he is moved. But once he's in a comfortable spot, he's just fine. Last night Kevin was on the couch playing with Judy for a while. While she was there, Nina came by to drop off some pictures she made of the kids. Gracie asked where she was going and Nina told her she was going to the grocery store...of course Gracie's response was, "Can I go?" Nina took her. Judy left to go home and Chris was in bed so Kevin and I got to play. He was laying on the couch in a comfortable position. He was wiggling all over the place, eating the line to the feeding tube bag, chewing on a baby dolls head (that's his new favorite thing, baby dolls that talk), whacking me in the face over and over with his hands, pulling my hair, kicking me in the face, pinching my face, poked me in the eye a couple of times, poked himself in the eye once...and he laughed and babbled the entire time. He's a little brut!

He started the Erythromycin last night at midnight - he threw up all night. I came down this morning and saw all of the cloth diapers that he had thrown up on - there was a big pile of them in the corner. I told the nurse this morning to put him on straight pedialyte for 3 hours and give his tummy a break. Gracie got in to my purse last night. She managed to turn on my Blackberry (hand held e-mail) and she deleted a couple of things. I wouldn't be surprised if she responded to a few e-mails!

My day will hopefully get better. I've spilled something down the front of my shirt and the car has steam shooting out the front of it - maybe a hose? Who knows...I've got to pop the hood to see if I can find a leak. So I'm sure I'll end up with some other stains on my clothes today.

Take care everyone!

Monday, June 20, 2005 6:56 AM

Our weekend started off with a complication - our boy broke 2 ribs on his left side. The 2 bottom ones. It must have been when he was throwing up on Friday after his tubby. He was screaming and it took him a while to settle down. Once he was settled, I could tell something was wrong. Every time you would pick him up he would scream. I had him on my lap on the front porch and Nina and I were trying to figure out what could be wrong. I would move his legs and he would cry and also if I touched his side. I asked her to act like she was going to pick him up under his arms and as soon as she did - he screamed. Chris wasn't home from work yet. I called Nighttime Pediatrics to see if they took x-rays. They did. So Nina stayed with Gracie until Chris came home so I could take Kevin. We were there for a while. But they did take the x-rays and told me that's what it was. The doctor said that for an adult they would tape them and tell them not to breath deep - but you can't do that with a baby. She called 2 hospital emergency rooms to see what they would do. She gave Kevin's background and they both said to just leave him be and give Motrin. They can't be taped. We just have to be very careful. Even handling him gently doesn't help when you have to move him or change his diaper or clothes. (Which seems to have to happen more often now that he's got an injury.) I want to cry every time I change him because it's very obvious that he's in pain. But I have to keep on and get it over with. He can't go in his bouncy chair or saucer. He is fine laying down on his back, sitting in his infant seat that reclines him, or laying on me with his head laying again my boobs. Those are the only 3 positions that he seems to tolerate.

For Father's Day my family came over and Chris' mom and brother came over. We had a cook out - Chris cooked. He was OK with that. Chris' sister sent the kids some gifts. One of them was sidewalk chalk for Gracie. My driveway is beautiful! (I helped too.) Kevin did pretty well. He stayed on the front porch for quite a while yesterday.

I wish I could be home with him. The nurse picked him up under his arms this morning and he freaked! I asked her not to pick him up like that. I told her to scoop him up under his hiney and head. I thought that was a little lack of common sense on her part. He needs his mommy. But, unfortunately, we need to eat and have health insurance so I have to work. I have to run off now. Have a great day!

Friday, June 17, 2005 7:35 AM

Sorry for no update yesterday, we didn't have a nurse. I got home Wednesday afternoon and Nina said that Kevin wasn't feeling well. He didn't have a good day with the nurse either. When I had called to check on him he was crying and she said he had been crying most of the day. Anyways, Nina said that he was lathargic and not smiling. Just not being himself. He felt a little warm. His temp was 99 degrees. No biggie. But 30 minutes later it was 100.5 degrees. I gave him ibuprofin and the fever broke about an hour later. Boom - it was over. He was smiling and giggling. I'm so glad that's all it was. His fevers are never a good thing and usually they don't go down and he gets admitted to the hospital. He did fine that night for Nikki and I had him the next morning (yesterday). Nina came to watch him at 11am because I had to meet with Dr. Uma and the State Dept. It went well. One thing that has changed is the State will not provide his pedialyte! I've been going out (or have Nina go out) to Target and WalMart to get it about once a week or 2. It adds up. So, the woman from the State said that I shouldn't be paying for it and got a prescription from Dr. Uma for it to send to Pharmaquip (where I get Kevin's food and supplies.) Another thing that came up was my weekends. It was just casual conversation before the meeting while we were waiting for Dr. Uma. She asked about what we do on weekends and how do I get things done. I told that woman that I can't pee without arranging it with my husband. I said that my weekends are in the house, inthe living room. I don't go out - I can't. I told her I was going to try to get help from another program. She said she would try to get approval for us for 4 hours each weekend day. Great! But the woman from the nursing company said they wouldn't be able to get someone for those short hours. How about 8 hours Saturday OR Sunday? She said she could probably find someone for that. So, I should find out on Monday if we've been approved for that or not. Let's keep our fingers crossed!

I have mailed out the majority of the pictures. When you get your envelope and notice that the stamps are sideways or upside down, it's because Gracie put all the stamps and return address labels on. She did a pretty good job with most of them. I took her and Kevin for a walk yesterday evening to the mailbox and corner store. It went pretty smoothly for us. (Until his food bag fell off the stroller and onto the ground and then I stepped on it and food went everywhere...) Daddy got a little bit of time alone. (I'll pass that off as his Father's Day present! Hey, I'd be thrilled if I got time alone!)

Kevin had a good night last night and hopefully he will do well today. I asked the nurse to please take him outside on the front porch when it's nice out and she could even take him for a walk.

Nina told me that the Infants and Toddlers people told her on Tuesday to start using sign language with him. He's small, but he has the intelligence for it. Nina has started using "mine" and "more" with him. They are going to bring a book for us to use next week. It'll be fun. And we'll be thrilled if he starts to use it!

We hope everyone has a wonderful weekend and a great Father's Day. Chris' will be just fine - I won't make him work too hard. (smile)

Wednesday, June 15, 2005 7:10 AM

We just can't seem to go one day without any drama. I left work late because of electrical problems with the building. After I got home, I gave the nursing company a call to find out if Stacy (day nurse) was OK since she wasn't coming to work. The woman at the company said, "Well...Stacy quit your case." I asked if it was because of me - and it was. Come to find out, Stacy didn't appreciate me confronting her last Friday about the methadone issue. I hadn't even spoken to the nursing company about it. I told the new weekend night nurse and she reported it to the company. They called Stacy to ask her about it and she did admit to them that she hung up on me that day. They told her that I have every right to question her about a medication and that she shouldn't have spoken to me in the manner that she did. Stacy didn't seem to give a damn. She told them to take her off of Kevin's case. I guess she was trying to hurt me in some way. It doesn't bother me - I was going to request a new nurse anyways. She just helped me out a little sooner than I had planned.

I told Chris about it after he got home. He called the nursing company and told them that if Stacy EVER asked about Kevin that they were to tell her absolutely nothing. He was no longer her concern. They agreed and said it wasn't their policy to do that anyways. Then Chris called Stacy. Sneaky little guy - I didn't know he was going to do that. He knew I would have tried to stop him. She was ignorant. She told Chris that she quit because I used the word "overdose" to her and she didn't appreciate that. Excuse me? What is it called when you draw up too much medication for someone? What is it called when the dose you drew up could have stopped my son from breathing? I was not nasty or confrontational with her at all. I'm just not like that. Well, Chris ended up getting frustrated with her and he got off the phone. She had told Chris that she was an LPN and she could get a job anywhere. Then Chris called the nursing company back to let them know how she acted with him. They were surprised and thought it wasn't acceptable. So, then the owner of the nursing company called us. I spoke to her and she agreed that Stacy needed to be let go from her company. Good - that's what we wanted. OK, Little Miss LPN, now you have to take your 7 1/2 month pregnant butt out to other nursing companies, submit your resume, interview and take their orientation program before you get work. Because she won't be getting any work from her current company. Sure, she can get a job anywhere, but it's gonna take her time. Hopefully these other companies will call for a reference. And she always doted on how she was a Christian. A Christian wouldn't act like she did.

So, for nursing coverage, I have someone who can work Monday through Thursday until 2pm. Nina said that she thinks this person interacts more with Kevin than Stacy did, just from observing her yesterday afternoon. So, Nina will come and relieve the nurse at 2pm. But the nurse told me this morning it was only some days, not every day, that she needs to leave at 2pm. I'm not sure about Friday's yet. I think Nina will watch them both. maybe I can split the day with her or something. We'll figure it out.

On another note - Kevin did really well yesterday. His vomiting has really decreased. I've been mixing the formula with pedialyte, but I've been making the formula more and more stronger each day to get him back on full strength formula. I think warming his food really is making a difference too. He only threw up 3 times yesterday and once last night. I hope he keeps this up.

Well, I've got to run. I hope everyone has a great day. (And I hope I have an uneventful, quiet day!) Take care!

Tuesday, June 14, 2005 6:54 AM

Kevin had a better day yesterday. He didn't throw up for Stacy at all. He threw up for Nina and again in the evening once. I've been diluting the food with pedialyte so I'll try to gradually take him back to full strength feeds. His food looks gross because the only generic pedialyte I could find was orange flavor. It was either that or purple.

The pictures have arrived!! They look great! I'll be sending them out very soon! I have many to send - so you all will be receiving an envelope with just the pics - no written notes or anything - I don't think I'll have the time for that. I know you all understand. Besides, you don't care about a note from me - you just want the pictures!

Stacy didn't show up for work today - they sent someone else. I'm sick to my stomach as I write. I'm going to see if I can take off early so she only has to watch him for 1/2 day. Kevin is going to be miserable with her watching him. Which means he'll cry. Which means he will throw up a lot. Which means she may lose her temper with him. Which means I'll have to kill her - then I'll go to jail, and lose our health insurance...so, it's just in everybody's best interest that I go home early. (what timing - I just talked to my supervisor and I can leave at lunchtime!) I'll call the nursing company to find out what happened and to see if Stacy is OK. I hope the baby didn't come early.

Take care - and he'll be just fine for a few hours....he better be...

Monday, June 13, 2005 7:05 AM

Our weekend started off with me wanting to strangle the day nurse. Kevin receives medications at 4pm, methadone and Vitamin E. I normally dose those up and leave them for Nina to give, but I had forgotten. When I got home, Nina told me that Stacy did it for her, but she didn't give Kevin the methadone Stacy drew up for her because it didn't look right. Nina was right - Stacy had drawn up almost double the dose. It would have knocked him out for the rest of the afternoon, if not worse. Too much may have stopped his breathing. Thank God Nina noticed. Then I thought, "Kevin has been fussy at night. Maybe Stacy is giving him too much for the morning dose and he is getting his regular dose in the afternoon and midnight and it's causing widthdrawl." So I called her and asked her about it. I was nice - so I thought. Stacy said she didn't draw it up. It was Viagra she said. Huh? Viagra wasn't due at 4pm and Viagra is white and thick - methadone is pink and smells like cherries. She got pretty crappy with me - which pissed me off to be honest. She started to raise her voice and I said, "Stacy, I was just calling to clarify this." She said, "thanks" and hung up. She came this morning and I said, "Good morning" to her she barely responded. I thought about it many times this weekend. It was hard for me to let it go. I kept thinking "ya know, I had every right to question her about this - especially when she has already overdosed my child months ago!" I'm not going to write about it anymore since it irritates me. I'm going to ask the nursing company to find someone to take her place for when he has her baby and then hopefully it will be someone who is good with Kevin and they can stay on and she won't come back. I noticed on her timesheet that she signed out for 3pm on 6/7 when she actually left at 12:30pm because Kevin had an appointment that day. She'll really be happy with me when I ask her to change that!

Friday evening my bother-in-law came over with his two girls and they stayed for dinner. My other neice was staying for the week so we had 4 girls (and Kevin) to entertain for the evening. Very interesting. But they had fun. It didn't take me long to fall asleep that night. Our night nurse that was scheduled for this weekend called out on Saturday afternoon. The nursing company got the new night nurse to cover instead. Chris and I are happier with her anyways. But the poor woman had to work today after watching Kevin last night. He did OK last night. He was pretty nasty most of the weekend. It's so frustrating. We have no idea what is wrong with him - it could be so many things. I do know that part of it is him being spoiled and wanting to be held. He has such a bad temper. And he doesn't give in easily. But that's not his entire problem. He got so bad this weekend I thought that maybe he had a broken bone or something. It was almost constant crying. We took his methadone down to .4cc yesterday. I can't tell if that's the problem or not because he was just as fussy the day before. Who knows - we'll just take it one day at a time and see how it goes. Oh, he also threw up most of the weekend too. I don't know if that's going to do any harm to his tummy over this long period of time. You know how you feel when you throw up - it's a horrible feeling. The heaving and gagging. This poor kid does that 10 times a day or more. I just couldn't imagine going through that myself. We feel so bad that we can't do anything for him. His Viagra stops on Wednesday, so we can start the Erythromycin on Thursday. Hopefully that will help with the throwing up. I've also started to warm up his food before I put it in his feeding bag. I don't know if that helps or not - but we'll keep trying it.

The weekend overall was pretty much the same as all our others. But it was just harder this weekend because of all the crying. He was happy at times - but not too many and not for too long. He was happy when he went poo-skating - he did that twice this weekend. Chris and I aren't even surprised by it anymore - it's become a normal thing. It puts a shine on the wood floors! Ick.

Pray that God sends us a good, caring, kind nurse for our little man....

Friday, June 10, 2005 7:09 AM

I apologize - but I don't have much time this morning. The swallow doctor didn't have much to say at all. Frankly, Chris and I both think it was a waste of our time. She said she would normally request a swallow study - but Kevin couldn't do it because he would just throw up the barium he would need to take in. She said that he does have some difficulty with his swallow, but since he hasn't had pneumonias in the past, then he should be handling it fine. She said to keep doing what we are doing. We try to give him baby food at times, even let him try to feed himself by using his hands. (That's very messy.) Lollipops, baby biscuits, etc. So - that was a waste. We don't think we will have the Infants and Toddlers speech therapist work with him on the feedings anymore - although she's only been to see him once. Maybe we can change our goals and she can work with his communication or something. We'll see.

Yesterday was pretty bad. Very stressful. VERY. On the way there, his feeding tube port wouldn't stay closed and food dripped down the seat and on the floor of the car. I tried to tape it closed - but that didn't work. Then the food pump kept alarming. Finally I just shut the thing off. When we got to the clinic I asked Chris to turn it back on. The port still wouldn't stay closed - so he had to stop it. Then, it was time for his meds. I put them through the tube, but they backed up into his feeding tube rather than going down into the G-tube. Chris hit the prime button on the machine to push it through. It just filled with air. What the hell? Finally, we opened up the food storage bag further and saw that the feeding tube had broken and food and medication were spilling everywhere. It was a sticky, stinky mess. Kevin was going to have to get his tube replaced since the ports weren't staying closed. That would have to wait until we got home.

The nurse took us back and got an EKG. She couldn't seem to get his pulse ox reading - so we skipped that. She wanted to weigh him and I told her he was 9.3kg yesterday and I wasn't putting him on the scale again. He was screaming the entire time. It was hot in the room and Chris and I were getting frustrated. Then we got put in an examining room and waited for the doctor. Kevin was aggrivated and wouldn't let you sit down with him. You had to stand. It starts to really hurt your back after a while so Chris and I kept taking turns. Dr. Ringel came in. It seemed like he didn't want to be there. He listened to Kevin's chest and back (while Kevin screamed) and went over his medications with us. He took him off the Lasix and he will come off the Viagra in 5 days. (That's good because he can't start the Erythromycin for his tummy troubles until after the Viagra stops because of serious side effects.) Kevin started to gag and throw up. So the doctor said, "I'll give you a minute" and he walked out! He went to see another patient and we had to sit there and wait another 15 minutes! Kevin didn't have any food and Chris and I were getting grumpy. I just took Kevin's tube out since he would need a new one when we got home anyways. He was more comfortable with it out. Then the doctor came back in. He went over the schpiel about what the possibilities are for Kevin. Everything depends. If he gets bigger (which I honestly don't think he will get much bigger) maybe, just maybe, something else could be done to help him out. But he will never get the full repair he needs in order to get the transplant. We knew that already. I swear - if that man said the word "unfortunately" one more time, Kevin wouldn't have been the only one screaming. If Kevin does get larger, but his liver starts to fail, then there is no point for any intervention. It wouldn't be worth it for Kevin. We will just let nature take its course. We won't have to go back for a cardiology appointment until October. The doctor said if something changes, to contact him. If Kevin grows and outgrows his conduit - we will notice and will arrange something at that time. If he turns blue and needs oxygen, then we will arrange something. I asked if these were possibilities before October and he said it was. Oh boy - isn't that just great. But you know - we can only take one day at a time and we'll just have to wait and see what happens. We could lose him at any time - nobody knows. We will just watch Kevin closely and keep him happy and wait...

We hope everyone has a great weekend!

Wednesday, June 8, 2005 7:08 AM

Yesterday...boy oh boy...It wasn't so bad I guess. Though parts of it stunk. I had to go to Dr. Uma's office to pick up some referrals for Kevin so I could take him to JHH. They gave me 4. I already owed one to Dr. Lau's office and we have 3 appointments this month. So I will already be out of referrals. So I asked them to do some more for me and I could pick them up when I meet Dr. Uma with the State Dept next week. I also needed a school form for Gracie signed. Not filled out - just signed. She said it would be $5. Forget it - I'll just send the old one we have to the school and hope it flies. I'm not paying $5 for a signature. I could get an autograph of Brad Pitt cheaper than that on e-bay! I had Gracie with me - and she did just fine. I remembered that I needed to get my blood pressure taken at my OB/GYN's office which was just down the hall. So we went. It was OK, then Gracie turned on me. The woman had the blood pressure cuff on my arm and Gracie started to go off. "I want to sit down in the chair!" Fine, I put her in the chair. "Not this chair!" "That chair!" The woman would give the cuff one squeeze and then try to appease Grace. Then another squeeze and would turn to Grace again. She said, "I can't take your blood pressure - it'll be too high!" Finally I told her to ignore the screaming and take the damn pressure so I could get Gracie out of there. "But can't you take a break first?" "TAKE THE PRESSURE!!" The entire time - Gracie was screaming. She took it and then looked at me and said, "I have no idea how that happened - but it's normal." She was amazed - so was I. I grabbed Gracie by the arm and ran out of there. I was so embarassed. All of those pregnant ladies don't have a clue as to what's coming their way! Good luck. She cried down the hall and into the elevator. And all the way down to the lobby. I stopped trying to calm her down - it was useless. I figured she would stop eventually. As we got off the elevator, I asked a woman with her 8 year old son, "Do you want to take her home with you?" She put her hand up and said, "No way - I've done my time already." I even offered her $5. But she wouldn't take her. That child cried all the way to the car. We got in the car and she gave me a hug and stopped crying. She was fine the rest of the day. Little twit.

As for that baby boy...Gracie and Denee were on the deck playing in the pool in the afternoon. Nina sat with Kevin inside to stay cool and let him watch through the sliding door. He stayed focused on them. Nina had to go, so she put a boppy pillow behind him and left him there so I could do the dishes, etc. He stayed there for another 20 minutes or more. The girls wanted to come inside so he had to move. Honestly, I tried to talk them in to staying out there longer because it seemed to be working out so well. (I should have offered them $5 too.) His mood was OK all day and evening - but he started to throw up around 5pm. He didn't stop. He threw up probably over 20 times by 9pm. I couldn't even give him all of his medications because he would just throw them up. I put him on pedialyte only at 9pm for about 4 hours. I checked the nurses records this morning and he threw up 7 times last night. It was better. Plus I made his food 1/2 strength for last night and today. I hope he gets better. I sent a note to his GI nurse. He will need to go on a medication to help with emptying his tummy. They mentioned Reglan - but we aren't going through that again. We have to take him to JHH today for a clinic appointment with the swallow doctor. We go again tomorrow for cardiology. I just don't want his throwing up the whole way there and while we are there. It's stressful enough for all of us.
I've got to run - I'll let you know what the swallow doctor says. Have a great day!

Tuesday, June 7, 2005 7:06 AM

Good morning everyone. Kevin did well yesterday afternoon and evening - but he didn't have a very good night. He threw up a lot. I don't think he's sick, I think he just gets too upset and that makes him throw up. I heard him crying many times last night. It was our regular night nurse - he just doesn't seem to be too thrilled with her right now. He was OK when she came, but when she took him from me he started to cry and get upset. After a few minutes, I took him back from her to get him settled down. After I got him calm and gave him back to her, he got upset again - but he settled quickly. I don't know what it is...hopefully tonight will go better.

I received a call yesterday from the nursing company...my nursing coverage from the State Dept had been cut off. Expired on 5/31. The woman from the Coordinating Center called me and asked if I received the renewal form. I had - 4 days ago! They had sent the forms to the wrong address - TWICE! So, they screw up and expect me to fill out a 9 page document immediately and send it back? Tough crap - they can't do that to me. I was pretty irritated. So, the nursing has been re-instated. What a pain in the rear.

I also sent an e-mail to Kevin's heart surgeon, Dr. Vricella. Instead of just typing a summary, I'll copy my note and his respond in to this journal:

Dr. Vricella - we received a letter from your office requesting a meeting after Kevin's cardiology appointment this week. There was a meeting before Kevin was released from the hospital telling us that there was nothing more that could be done for Kevin. It's not easy hearing it for the 2nd time that our child is going to die. You were not able to be at that meeting because of your busy schedule. I'm sending this e-mail to see if that is the purpose of Chris and I coming to your office. We are already aware of the situation and we would like to spare ourselves from having to hear it again. We understand what's going on. Also, you are a very busy man and I'm sure you could use the time for other things. If there is something more you need to tell us, by all means, we will be there. But if it's to tell us that there will be no more intervention for Kevin, we don't need to take up your time. We appreciate all of your effort and very hard work. Because of you, Kevin has a little bit more time to bless us with his presence and fill our lives with happiness. We can't thank you enough.

Sincerely,

Karen McLane


HIS RESPONSE:

Dear Mr. and Mrs. McLane:
I really apreciated your e-mail, it has been a real privilege to take care of Kevin. You said I am busy, but the door is and will always be open on very short notice to the three of you. As you have heard from me and my colleagues (Dr. Ringel in particular), we do not have great options at this point, and if Kevin is doing relatively well for now, there is no need for you to come here and see me and get depressed. I will of course be immediately available to you if something comes up. Non-operative procedures in the cath lab are still an option to help him out.
Please keep me informed of any changes.
In thanking you for your trust with your little one, I send best regards.
Sincerely,
Luca Vricella

I've got to run along now. Everyone have a great day!

Monday, June 6, 2005 6:50 AM

BUSY weekend. We took Kevin and Gracie out for our first family outing! We went to the carnival in Gaithersburg. It took an hour to get everything ready, but it went smoothly. Chris wasn't so sure when I brought the subject up. But I diluted his food so he wouldn't get sick as much and the weather was supposed to be 73 and partly sunny. That was wrong! I'm sitting here typing with a farmers tan on my arms and a burnt face! They had taken down all of the benches and canopy's at the park (because it was the last day and they were packing up) so there wasn't too many ways to get out of the sun and sit down. Kevin did't want to be in his stroller because it was too hot. That boy was up at 7am and didn't take a nap until after we got home. And that was only a 45 minute nap! We arrived at the park at 10am and didn't leave until 3pm! Kevin rode the Merry-Go-Round twice (Gracie rode it about 12 times.) He only got sick twice. Both kids did really well. We had taken a small cooler bag with his formula and medication in it. And a damp washcloth for his face. I had to keep asking people in the food booth's to wet it for me. We got all kinds of looks with Kevin. From kids and adults. We probably got more looks than I'm aware of because I was too busy having fun with the kids.

So after we got home, Gracie and I napped for an hour. Kevin rested with his daddy for about 45 minutes. Then we decided to fill up the baby pool on the deck and get in to cool off. I took Kevin in. I had bought some of those Little Swimmers pants so I wouldn't have to put him in with a diaper. Good thing - he filled that Little Swimmer up with poo before we got out. I had to keep his clothes on so I could pin his IV line and G-tube up out of the way. He couldn't get in too deep because it would have gotten the IV site wet. He had fun watching Gracie and playing with her Barbie's. He liked splashing too. Then I handed him over to his Dad and I got out. It was a long, busy day for all of us. His new nurse started that night and he slept pretty good since he was so worn out. She was nice and did well too.

Yesterday we stayed home, but Kevin was fussy. All day. After his 4pm methadone dose I realized that could be his problem. We had taken him down from .5mg to .4mg that morning. He had been tolerating the weaning so far - but .5mg was his regular dose that he had been on for the last few months. Getting lower than that is going to be a problem. They had him going down by .1mg every 2 days (starting at 1mg). Then after he got to .4mg it would be down once every week. Chris and I are going to leave him at .5mg for a week instead of just 2 days and see how he does then. I hope it works. If not, he's gonna have to stay on the methadone. Did I confuse you? Anyways, he got .4mg that afternoon and I had Chris draw up another .1mg 30 minutes later (for a total of .5mg which was his baseline before his surgery.) Within 30 minutes - he was fine. He was fussy last night for the nurse and a little bit this morning. I'll check on him later. I'm sure he'll be fine as the day goes on.

That's about it. A pretty good weekend overall. (Yesterday could have been better - but we've had worse days.) It was very exciting to get both kids out at the same time and have things so smoothly. (Maybe I can talk Chris in to going someplace else next weekend!)

Friday, June 3, 2005 6:36 AM

Kevin and I got to spend some time together yesterday. Gan spent time with him too. I got home shortly after 11am and Stacy said he had been awake for a while. He fell asleep for me about 1pm and slept for a whole 25 minutes. That was it. He didn't go to sleep again until after 8pm. Nina brought Gracie home early so I could run an errand with her (grocery - wow). That kid was already asking me, "Are we done yet?" when I was just starting the 2nd aisle. Then he got a tubby. He was really tired - but he didn't rest. I put him in the bouncy chair that hangs under the doorway so I could get Gracie dinner. He was enjoying it - so I left him there while I did the dishes. He was giggling and babbling. I turned to look at him and he was having such a good time because he had poopied down his leg, onto his foot and onto the hardwood floors. He was in his bare feet. He was having SO much fun just slipping and sliding around in it, mooshing it all over the floor (and part of the carpet.) I stood there and watched him for a few seconds. (It's not like it could get any worse than what it was.) I cleaned him up - which was tricky because he kept wanting to put his feet down and play in it. Would you believe that he didn't get any mess on his outfit? The poop snuck out the side of his diaper and totally missed his clothes. Lucky us.

He babbled a lot yesterday too. Da-Da. Over and over. No Ma-ma's yet. He can wave good-bye now too! It's a little weak - but it's a wave. He also understands when you tell him to say "yes". You say, "Say yes Kevin" and he will nod his head.

I got a new recipe from the nutritionist yesterday. I made it last night. I don't see too much difference than what I already had. Plus she wants us to push him up to 60 cc's an hour slowly. I'm not too confident this will work. I'll leave him at his current 54 an hour for a week on this new recipe and see how he does. If he throws up too much, then what's the point of pushing him to 60? I'll just end up going back to what we had and keep him at 54. I don't know how much he weighs now. He was around 19 1/2 pounds when we brought him home from the hospital. Speaking of hospital...we received the bill from his last visit. It was $77,890. That doesn't include the surgery or the emergency cath. We don't pay all of that - thank God for insurance coverage. MDIPA should really be hurting after all Kevin has cost them.

Oh, by the way, the nursing company called me yesterday afternoon. She said, "Is Kevin on antibiotics?" I told her he wasn't. She said, "Oh, I assumed he was since he just got out of the hospital. So you don't get extra nursing coverage." CRAP! I said, "So, no weekend coverage?" She said, "No." I said, "Fine" and hung up. I was irritated that she didn't have her facts together before she started all this. Chris and I were very excited to have the extra help. They don't understand what affect this has on a person. It's screwing with our minds in a way. We should have known it was too good to be true. I also sent a note yesterday to the picture lady asking about the invoice. She hadn't even prepared it yet! She said she was a little behind and she would send it that day. I think it's been 2 weeks since I asked her for it and placed the order! God only knows how long it will take to get the pictures once I pay for them. Complain, complain, complain...

I better get going. If you all go to the main Caringbridge site to make your way to Kevin's site there is a story on the front page about a little boy, Charlie - I read it. Then I read some of the journal entries where other pages are mentioned and I read one of those. They all had the same disorder. I cried for about 3 hours. They all explain how their children died when it came to be their time. I can't help but wonder sometimes what it will be like for us. I just hope we are there. It's difficult for people to understand what we are feeling and going through. So much runs through your head - and it's constant. People who know me, but don't know about Kevin except that he's sick, ask me how he's doing. I don't know what to say. I say that he's doing fine and he's a little trooper. I don't want to say that he's dying or on hospice care. But he is. I guess I don't want to put people "on the spot" because they wouldn't know what to say. Or it would bring them down. But maybe it would make them appreciate what they have in their lives. I just don't know - it's so strange. OK, now that I've bummed people out, I'll sign off. To cheer you up, just picture him in his bouncy chair with a big old smile, looking like he is ice skating on my hardwood floors in his poo!

Thursday, June 2, 2005 6:43 AM

Kevin skipped his nap again last evening. After I got home, Nina and I gave him a tubby and I changed the tape on his IV site and his face. Chris wasn't feeling well, so he went to bed as soon as he got home. I took the kids in the kitchen to fix Gracie's dinner and Kevin was being so good, just sitting in his chair watching a video. Quiet as could be. That's because he was concentrating on ripping the new tape job off of his face. He did well - he only threw up for me one huge time. But the nurse said he threw up most of the night and didn't sleep well. I have been making his food less concentrated and have been increasing it little by little, trying to get it back to normal strength. I added more formula last night, so that could be why he got sick so much. I haven't heard back from the nutritionist. I sent her an e-mail on Tuesday asking her about the formula and telling her he's throwing up way too much. I'll send her another note today.

We had a new nurse come by in the early evening to see Kevin. She is interested in watching him on some weekend evenings. She works at the assisted living place 5 blocks away from our house. She's an RN too. She seemed smart and nice. Her 9 year old son had tetrology of fallot (which is the condition Kevin has in his heart). But her son's was fixable - Kevin's isn't. Hopefully she'll like Kevin and want to work for us some.

I bought Gracie and Kevin a new pool for outside. Nina blew it up in the living room yesterday and put the kids in it. (No water of course!) Kevin had a good time and was really giggling watching Gracie play. His head barely reaches the top of the pool.

Nothing else to report. Oh, I still haven't received the invoice for those pictures! She won't send the pictures until I pay for them - but how can I pay when I don't have the invoice? I'll send her a note today. Not too many people have sent me their addresses - but I put you on my list to get pics anyways. I need you to send me your addresses please: Lesley Pesnicak, Dawn Dee, Kim Dyer, Sherri Strach, Chris Woods (and mom), Susana Florez, Mary Roesinger, Cindy Rhodes and Anneliese. If anyone else is interested - just let me know. If I end up having too many pictures left over I have no idea what I'd do with them all!

I have to leave work early today because Stacy has a doctor's appointment. I get quality time with Kev. I sure hope he doesn't sleep through it all....

Wednesday, June 1, 2005 7:05 AM

Kevin is still doing well. He's babbling so much! He's said da-da a bunch of times. When he does, I say, "No, Kevin - you're supposed to say MA-MA!" He started to do that raspberry thing with his tongue - ya know, the thing where you kinda spray spittle everywhere...We are impressed with every little thing he does. He's been staying awake the last couple of days through dinnertime. He usually takes a nap at that time so I can cook and eat dinner. He's just been staying up. It makes it a little more difficult. We just bring him in the kitchen and sit him at the table with us. I've been giving him baby biscuits. He gnaws on them a little bit and then plays the game "I'll throw it on the floor and you pick it up for me 50 gazillion times!"

We spent a lot of time on the front porch in the evening. Then Chris and Gracie got in the jacuzzi so I took Kevin to Gan and Pop's for a quick visit. I plopped him on his Pop's lap. They had a good time together. It was cute. Kevin copied everything my dad did. The noises and the faces. I'm glad the weather is nice and we can walk to places easily.

I spoke to the woman who is in charge of Kevin's case. She works at the Coordinating Center who is contracted by the State Dept. She said that we weren't approved for any weekend day coverage and she hadn't been speaking to anyone at the nursing company about it. She said they must have us confused with another family. OK - well at least we got 1 day out of it. But then the nursing company called me this morning at 7am. She said that we had been approved for the weekend nursing. I asked her who she had been speaking to because the woman I deal with had no clue about it. The nursing company told me that every time Kevin is discharged from the hospital that they have to call them directly to get approval to re-start the nursing coverage. She said she was dealing with someone at the state directly. So, we may have this afterall! (Even though they don't have anyone to cover us yet.) I have to speak to the woman at the Coordinating Center to make sure she is on the same page. I sure hope she doesn't try to fight it or anything. That would upset me. So, I'm not going to get too excited about it because first of all - we have no coverage and secondly, I need to make sure it's been approved and will stay approved. That would be such a huge help to us. It would really ease some of our stress. We'll keep our fingers crossed.

Time to run - have a great day!

Tuesday, May 31, 2005 6:34 AM

Kevin had a pretty good weekend. Friday night Nina watched him so we could take Gracie to the Youth Carnival. She had lots of fun. Gracie ended up getting a big blister on the inside of her thumb on the very last ride. She cried the entire way home. And her poor daddy didn't feel good from going on a ride with her earlier. Then we had a nurse on Saturday. I didn't ask why - I just took it. Stacy had come to watch him. She said that the nursing company told her we had weekend coverage and asked her to work. Nobody from the company or State Dept. told me about that. Unfortunately, the nursing company found their mistake by Sunday morning. They said that the State Dept had been discussing weekend coverage with them for us. She thought it was approved when Kevin got discharged from the hospital - but it wasn't. I think she may be getting us mixed up with someone else. I asked about weekend day coverage a very long time ago and I was told that we can't have it. They said the purpose of this program was for me to be able to sleep and work. I don't have to do either of those on the weekend - so no coverage. It's fine with me if they want to change their minds. I just received the paperwork in the mail to re-enroll Kevin in the State program. It's a lot of work. I also received a call that we have to meet with the State and Dr. Uma again. I hope it isn't so hard to get a date and time nailed down with her again. And I'm not sure how much she will charge me...we currently receive 10 hours at night on the weekends - the State wanted to cut that to 8 last time. They said they would hold off until the June meeting to make the change. That stinks. Maybe I can talk them out of that change. That would be 10pm to 6am - ick.

Saturday since we had a nurse, me and my mom took Gracie and my sisters kids to the carnival. We all had fun. The day went by very fast. We didn't do too much on Sunday. Chris, Gracie and my nephew got in the hot tub. So I took Kevin out and put him at the corner so he could stick his feet in. He enjoyed it. I let him stay there for about 10 minutes - then I took him down to Gan and Pop's for a visit. He did really well and sat with his Gan for a long time. When he was getting ready to fall asleep - it was time to bring him home. But he had to throw up everywhere first. Chris and I don't know what's going on with that. He's been getting sick so much lately. I put him on clear Pedialyte last night for several hours. Then 1/2 strength food for today. I'm going to call the nutritionist at JHU to see what she says. He needs those calories so we don't want to cut the concentration of the formula or cut back on the amount he gets each hour. But then again, he doesn't get many calories when he keeps throwing up what's in his stomach. We'll see what she says. Chris and I agree that this is just no way for Kevin to be. It's got to be uncomfortable for him.

Yesterday we took Gracie to the parade. Stacy came at 9am yesterday so we left Kevin at home with her. He would have been bored anyways. My forehead got burnt. Gracie had a good time. She waved and smiled at everyone and waved her flag to everybody. Then I took Gracie and Kevin down the street to Judy's yesterday afternoon because Judy was having a party. Friend's of Judy got to meet Kevin. People who had been hearing about him and reading his site finally got to meet him. Judy has a gumball machine - we got Kevin a piece out so he could taste it. Nina held him and let him lick it. He liked it - but he was a bit messy when he was finished. The gumball had a bunch of white spots where Kevin had licked all the flavor off of it. After we got home, Kevin stayed awake. He should have been exhausted. He did finally take a nap for about 20 minutes. Then he stayed awake another 3 hours! We've been weaning him down on the methadone and he's tolerating it well. I think that may be one reason why he's staying awake longer. He's been a good boy this weekend. He keeps us busy. VERY busy....

Friday, May 27, 2005 7:25 AM

Sorry I haven't written. Today will be my first day back to work. Kevin is feeling better since he's been home. Each day seems to get a little better for him. He was very sleepy at first (and still kinda is), due to the methadone increase. I've already started to wean him from that (starting yesterday). To get him back to his normal methadone dose should only take 2 weeks. But then to wean him off the methadone is going to take until the end of July. I made out a weaning schedule. I hope he does well. If not, he'll just stay on it. Whatever we need to make him comfortable.

Kevin didn't want to sit up unassisted his first couple of days home - but that's gotten better. He is back in his exersaucer and bouncy chair and handling it just fine. He isn't in any pain. He is having problems with low oxygen saturation levels though. They are running 84-88 percent. If he gets too much lower he will need oxygen. We have that on standby.

Gracie enjoys having Kevin at home - but she's a little jealous of course. She loves to give him kisses and hugs. So do Chris and I. Some days are better for me than others. My moods go up and down. Some days I look at him and he smiles at me and I laugh - then I start to cry. I start to think of how much I'm going to miss it. But then I have to talk myself out of the funk. It's so hard.

Kevin normally takes a nap around dinnertime so we can eat...that didn't happen last night. He was tired - but wouldn't rest without me patting him on the hiney. I couldn't eat dinner and pat him at the same time. So, he stayed up and played in his saucer and we ate in the living room. Then he started to get tired. So, we packed him up and went down to the park with Gracie. The kids had fun. Kevin enjoyed watching Gracie play. And we played on the swing. He was giggling. Our neighbor Judy came down to see the kids. We were there for an hour. Gracie didn't want to go home, but we didn't have Kevin on his feeds and he was getting behind on his medications. I didn't mind having him off his feeds because he has been throwing up a lot. He did OK in the evening and all last night.

Hopefully he will continue to get better and feel better each day that he's home. I forgot to tell you that Hospice has increased their visits. They will be coming 4 times a week now. Sorry to cut it short - but I have to go. We hope you all have a great holiday weekend!

Tuesday, May 24, 2005 8:03 AM

He's home! It was a very long day yesterday. There is a lot to get back in place after Kevin's been gone (such as medications and supplies). He settled right back in though. I know he's more comfortable here.

The day started off pretty cruddy. Chris called to check on Kevin in the morning and the nurse said he had thrown up. Chris asked when. She said, "I dunno. Somewhere between 8am and 8:45am." Chris was pretty upset that he hadn't been checked on more frequently. So was I, but I told him we needed to just get there and get him home where we know he would receive the care he needed. After we arrived, we had lots to do there also. We needed to speak to someone on the pain service about getting his methadone weaned back down, we needed to speak to someone from ID about this VRE and precautions at home, we needed to get the medications straight and get prescriptions for the new ones, get dosing times, make appointments for follow up, blah blah blah. By the way, the ID people told us we have no precautions at home like in the hospital. We just need to keep our hands clean. We were glad about that.

He got his staples and stiches removed - it went OK. Then we asked for the cardiology nurse to take a look at his central line. It seems to have come out of his skin a few mm's and was icky looking. She agreed that it didn't look right and someone from pediatric surgery needed to look at it. They were all in surgery. They came a couple of hours later. The doctor said the line had come out a bit, but it was OK. It seemed to be tugging on Kevin's skin, but he said that was OK too. He said that since Kevin is so sick and such a hard kid to get an IV in, that it should stay in. It's been in since late last year. He said they stay in as long as they work so it could stay in for years. It's a pain in the butt - but it's best for Kevin. So it stayed.

We got packed up and out of there around 6pm. The downtown Baltimore traffic on a rainy night was awful. It took us about 45 minutes just to get through town to the highway. Kevin did well on the way home. He wasn't a huge fan of the traffic though - neither was dad. His car seat faces forward now and you could tell he really enjoyed it. He just stared out the windshield watching everything outside. We got home and as soon as I got him out of his carseat - he got gaggy. I opened the sliding side door of the van and stuck his head out. He promptly threw up in the driveway. Then, he threw up his tube. He had a lot of bad luck with that tube in the hospital. He had to have it changed 5 or 6 times. The tube he had in was 1 size smaller than he had at home. I thought it would be more comfortable for him. I think it is, but the problem is that since it's smaller/thinner, it comes up easier when he throws up. So, we got him inside and got a tubby ready for him. He really needed it. After the tubby, we had to change the bandage on his IV site and then put a new tube in. It went OK. It just took one try. Then he was dressed and ready to watch his sister jump around. She was very happy to see him. She gave him lots of kisses and hugs.

His first night went OK. He didn't throw up and I didn't hear him all night. I guess the fact that I was exhausted and had taken sleeping pills helped with that part. He's a little fussy this morning - but I'll be home today and tomorrow to take care of him. My supervisor told me I could take the next 2 days off. It's a huge help. I was very happy to hear that. I'm going to enjoy being with him. Chris is off today too. There is still a lot we need to get done today to get back on track. But now we won't be so stressed trying to get it done in the evening.

So, our baby is doing well and happy to be home. We are too. He's such a blessing. I need to go give him a hug....take care!

Saturday, May 21, 2005 8:52 PM

Kevin came out of intensive care last night. He's healing well - but he's having problems with drug withdrawl. He's shaky and kinda mean. They were giving him his regular methadone dose - but it wasn't helping. They prescribed oxycodone - but that wasn't working either. They increased his methadone last night by .1 cc. It didn't do the trick. We said something to them today about it and they went up another .2 cc's. Hopefully that will do the trick. We were there over 5 hours today and he only slept about 30 minutes. He's just restless and he whines a lot. He doesn't want you to touch him either. You can't touch his hands or stroke him on the arms or face. That's just no the way he normally is. We pray he's back to himself soon. He was on so many drugs - it really messed him up.

Unfortunately, Kevin must be in a room alone because of the "contact precautions". Chris and I can't stand him being alone. Judy called this afternoon and went to sit with Kevin tonight while her hubby is at a baseball game. That made me feel SO much better. To know someone would be there with him that cared about him and wouldn't leave him. I'm sure Kevin appreciates it too.

They said Kevin can come home this weekend - if we had nursing care. We don't. I contacted the company to see if Nikki could work Sunday night but she can't. So Kevin can't come home until Monday. Chris and I have many questions because Kevin will still need to be on the contact precautions. I'm not sure if the day nurse, Stacy, will want to even watch him because she's pregnant. I don't think it's anything to worry about. I think this VRE thing is over-rated. Some doctors have said the same thing. I believe, from what I heard today, that this can/will pass. Someone from Infectious Diseases was supposed to come by to speak to us - but they never did. Chris and I will have a list of questions to ask on Monday before he comes home. Kevin will be so much more comfortable at home. I don't know when he will have to go back to get the staples out of his chest. That won't be pleasant. I think I counted 20 staples. And then he's got 9 stitches in his tummy where the tubes were draining the fluid after the operation. Oh yeah - I forgot about the 4 stitches in his neck too...he's a mess. But he'll get better and stronger with time. He needs to put some weight back on too. He's down to 19 lbs. His thunder thighs have turned into chicken legs.

I've got to run - I need to get Gracie in to bed. I was told she did really well in her ballet recital today. Gan and Pop took pictures so I'll get some up on the site after they are developed. And of course some new ones of Kevin. You all haven't seen his haircut from over a month ago! I did get those pictures ordered that I spoke of. Hopefully they won't take too long to receive. I ordered a whole bunch of wallet sizes and only 2 people have requested them so far...

OK, OK, I have to go... I'll update after we get him home. Take care and we know you'll keep our little sweety in your prayers.

Thursday, May 19, 2005 7:33 PM

I'm sorry I haven't written. Yesterday Kevin had a pretty good day. Chris and I got to hold him for the first time in over a week. It was uncomfortable because he had so many tubes and wires still - but Kevin enjoyed it. So did I. I have more information about the situation with Kevin that occured the other day. He has contracted something called VRE. It's vancomycin resistance endococcus. This means that when he gets another infection, he can't be treated with vancomycin (vanc). He has been treated with vanc every single time he's gotten sick. It's the biggest, baddest antibiotic out there. We don't know what will happen if Kevin gets an infection - if he can't be treated with vanc and nothing else works, it could kill him. Chris and I have to gown up when we enter the room and take it off every time we leave the room. It's not for Kevin's protection - it's for others. Chris and I will probably contract this VRE from being around Kevin. We gown up so we don't spread it to others. Nobody knows how he got it and there's nothing that can be done about it.

Yesterday I asked the nurse what Kevin's bili count and ammonia levels were. They were both getting higher each day. His bili count was up to 44. I asked why he wasn't getting the 2 medications he is normally on to help with those issues. (I had originally asked a week ago - but they ignored me.) She said, "That's a good idea - let's ask the doctor." Right then, the cardiologist walked in. He introduced himself, because we had never met, and then I started right in on him. I asked him the same questions. He said he would put Kevin on both medications. Great. He asked if there was anything else and I told him I wanted the IV in Kevin's wrist artery to come out. It was hurting him and there was no longer a need for it. He agreed. He walked away and then came back to write the orders in Kevin's chart. Of course - I watched over his shoulder. That was a good thing - the way he wrote the orders, he would have given Kevin too much medication. He wrote for 420 mg of Actigall (which was 3 times more than he should get) and 200 mg of Neomycin (which was more than 2 times the amount he should get.) I told him that they were the wrong amounts and to please check the medication sheet that I had provided. He couldn't find it. He got another chart that belongs to Kevin and it was in there. He wrote for the correct amount. I was irritated and he knew it. He's a cardiologist, not a gastroenterologist. Well then, if you aren't sure - you ask. He could have hurt Kevin. That's why it's so hard for Chris and I to go to work when Kevin is in the hospital. We aren't there to stand up for him or talk to the doctors. It's so frustrating. We want him home.

Today the doctors met with Chris (I wasn't there). Cardiology, Dr. Lau (liver surgeon), social worker and Dr. Schwarz (liver specialist). They didn't say something that we didn't know already. But that doesn't make it any easier. We've now been told for the second time that our son is going to die. No more heart surgeries, no more cardiac caths, no liver transplant. There is just nothing more they can do. (God, I keep picturing that little boy's face smiling at me.) It hurts just as much this time as it did the first. I'm sad, angry, hurt and emotionally exhausted. So many thoughts are running through our heads right now. Nobody can say how long he will live since Kevin has baffled them once already. (And still is.) I keep telling Chris (and everyone else) that they've been wrong before. I say that maybe Kevin will come home again and grow. Maybe he'll change on the inside. But they say he won't. You have to cling on to a little bit of hope. We can only do what we've been doing all along. Pray every time we have the chance, thanking God for each day we have him, and love him with all our hearts. He is such a beautiful boy. I'm so sorry that he has suffered so much. I believe, for that, that his reward will be so much greater in Heaven. Also for touching so many lives. We love him so very much.

The doctor's also brought up the DNR orders again (do not resucitate). Chris and I aren't going to sign those at this time. We don't feel that Kevin is that sick that he needs to be on them at this point. Once he gets worse, whether it be his liver or his heart, then we will make that call. We won't let Kevin suffer unneccesarily. But we just aren't there yet.

I'm sorry. So very sorry.

I can't write anymore - I can't see what I'm doing through these damn tears....

Tuesday, May 17, 2005 3:40 PM

I will be going to the hospital with Chris tomorrow. He called this afternoon and told me that Kevin has some type of infection or something and he's been moved to another room in PICU. You have to gown up to be in the room with him. When I called this morning the stupid nurse told me he was moved - but didn't tell me that was the reason! Their communication stinks in the PICU. Chris was absolutely furious today. He also told me Kevin was so icky and dirty that 3 of his fingers were stuck together somehow. He also asked the nurse for some alcohol to take a sticky sensor off of Kevin's side because he didn't want to hurt Kevin's skin - so what did she do? She walked up and ripped it off of Kevin and he started to cry. Chris could have done that if he wanted to - that wasn't the point. It's so aggravating! I have to run. I'll try to update from the hospital tomorrow!!

Tuesday, May 17, 2005 7:22 AM

Chris said that Kevin had a pretty good day yesterday. I sure wish I was there. He was awake most of the day. Chris said that when he arrived, he stopped at the little girl next to Kevin and was talking to her (heart surgery baby, Destiny). He said that Kevin was awake and grunted at him because Chris hadn't spoken to him. The nurse said, "Hey Dad!!" and Chris turned around and saw Kevin staring at him. He was giving Dad the evil eye.

Chris took the gifts in to the other kids that I had bought(Destiny, Brianna and Malachi). He said that 2 of them had been moved out of intensive care so he had to go to 2 different floors to find them. Brianna (lawnmower accident) is doing well. She's handling it really great. An adult would never be able to handle it as well as she is and she's 5. I don't know anybody who could handle what little Kevin has gone through either. Those little babies are so strong. Chris said she enjoyed her gifts. She's so cute, I wish you all could see her.

Chris didn't get to hold Kevin yesterday and probably won't today either. He has had many things taken out of his body (tubes, wires, etc.), but he is still strapped down to the bed at the wrists, has a nasal canula on with a high oxygen rate and has an IV in his wrist artery and his jugular in the neck. The doctors said he can probably get out of the PICU on Wednesday or Thursday. Then he will go down to the 6th floor for a few days. Those nurses are waiting for him.

I called to check on Kevin last night and the nurse said he was "fine". That was it - there was silence. Chris and I don't like that. He's fine? Well then - send him home if he's fine! I shouldn't have to pull information out of the nurses when I call. I had to ask about everything - pain medication status (he is being weaned), O2 rate, attitude, is he on food yet, etc. General stuff that they should keep me updated on when I call. Sometimes we get a questionaire after we leave the PICU. I can't wait to get my hands on it! We had one doctor come to Kevin's bedside regularly when Kevin was having problems - but he NEVER spoke to Chris or I. For 2 whole days that guy ignored us. If you son had been in cardiac arrest that morning and was now having problems with blood pressure - you would think someone would try to tell you what is going on. Nope, not this guy. What a jerk. I better get that questionaire!! (If not, I'll ask for one!) I think my blood pressure just went up....

We've picked out the photographs that we liked and will get the order placed today. I'll send wallet sizes to anybody who wants them. I'm ordering plenty. I've started a list of addresses, so just let me know. (I've got you Anita and Frank! I'm glad you are doing well!)

Well, I better go now. Lots to do. Take care everyone and have a great day! I'll tell Chris to give that baby boy kisses from everyone - that'll keep him busy for a while!

Monday, May 16, 2005 7:18 AM

Kevin had a good weekend. He didn't pull any funny stuff. Friday afternoon, after Chris and I got back from lunch, they told us that they were going to try to get Kevin off of the Nitrix oxide (NO2) machine (which helped with his lungs). But they were going to use a drug in it's place. What's the drug? VIAGRA. Yes, you read that correctly. Our son is a drug addict and is using Viagra at the age of 18 months. It seems to be working well - he didn't have any trouble coming off the NO2. He woke up for us on Saturday. Both eyes were wide open and he was looking at both Chris and I on each side of his bed. He stayed awake for about 30 minutes. We asked him if he wanted to come home and she shook his head "yes". It was so adorable! He doesn't like having that huge breathing tube down his throat, but he tolerated it OK. He was supposed to have it taken out late last night or early this morning. I'm not sure if that's happened yet or not. I can't call to check on him until after their shift change at 8am. I hope it's been removed. Once that is taken out, he will have to go on another breathing machine (bi-pap) for a little while. Hopefully he won't be on that machine long because he doesn't like that one either. I think it's worse than the breathing tube.

Kevin has had many visitors from the hospital. All the PICU nurses have mentioned that he has a lot of girlfriends. They came up and Chris and I told them that he would shake his head. So they asked him if he wanted to come to the 6th floor to be with them and he shook it. It was just so darn cute. He's going to be just fine. He may be home by this weekend. He should get out of PICU in a couple of days.

A little 5 year old girl came in yesterday after emergency surgery. She had a lawnmower accident and lost her foot. I don't know where her parents were. She was awake and she was so brave! She had to get an IV because one stopped working. She was such a trooper. Chris and I felt so bad for her. There is another little boy in the hospital that we know and he turned 1 yesterday. So I went shopping with Gracie last night to get him a birthday present. Plus I had to get that little girl something. They didn't have "Princess" movies at the hospital so I got her one of those to watch and a stuffed horse. She had 2 little horsies with her at her bed. And then I got 2 cute little outfits for the little doll next to Kevin. She is 1 week old and had heart surgery. She is the same size Kevin was. I can't believe he was ever that small. Oh, and Gracie got a Barbie for herself. It was originally for the little girl - but I went overboard and Gracie wanted to open it so I let her have it.

Chris will be going to the hospital today without me. He dropped me off at work this morning. I must say - it totally stinks! I want to be with Kevin. Especially if he's getting his breathing tube out. We want to hold him so badly. We haven't held him in a week. The time will come. Maybe Chris can hold him today. Probably not, but he should be able to tomorrow.

I have to run - I need to start work. I'll write again tomorrow to let you know how well he's doing!

Friday, May 13, 2005 11:17 AM

Kevin started to misbehave yesterday as soon as Chris and I got back from lunch. His heart rate was dropping. He's normally 135-150 bpm at home. And being sedated here, he runs about 125 bpm. He dropped as low as 72 bpm yesterday afternoon. They couldn't understand why. They thought that maybe he had a bleed in his brain that could cause it. So he had to go for a head CT scan. That was difficult. He is hooked up to so much equipment. Half way down the hall, his sats dropped. They had to pull over to the side and they started to freak out a little bit. I thought to myself, "God - don't let my child die in a hallway!" Kevin straightened himself back up and we went on to the CT room. Chris and I couldn't go in. But we were told he did fine. By the time Chris and I left the hospital, Kevin's heartrate was up to 118 bpm. And his CT scan had come back normal. When the doctor told me it was normal I said, "I know." She looked at me like "who told you". I said, "I just had a feeling that it was fine." I wasn't worried. The Chaplain came by to see us. We hadn't met her before. She was nice. She couldn't understand why I was so calm. She asked me how I handled it. You know, people seem to think that when you have faith and hope that you are being unrealistic or naive. I'm not either of those. I'm fully aware that my child can die. But I don't have to dwell on that and sit back to wait for it to happen.

We had to leave early so we could take Gracie to Jeepers. Ick. (But she had fun.) Right before we got home (around 5pm) the PICU nurse called. She said we didn't have to come in, but Kevin's heart rate was dropping again. They were going to do an ECHO at the bedside to see if they could find anything. We went on to Jeepers (ick again) and I called from there about 7pm. The ECHO didn't show anything they weren't already aware of. So that part was good, but they still don't know why his heart is slowing down. He is on an external pacemaker that was doing most of the work for him yesterday evening, but when we called later, he was doing better. Right now he is about 104 bpm. But his blood pressure is fine, so they aren't too worried.

When Chris and I arrived today Kevin had been cleaned up a little. And they had taken the 3 chest tubes out. He looks better without those. It's a pretty awful sight. We were told that he will probably be on the respirator for at least 3 more days. I had told Kevin that he needed to be better by Sunday because Mommy had to go back to work next week. Chris and I are going to split the week next week so I can work 3 days. I hate to have to do that, but I've been off all this week.

We got the photos back from the photographer that came to the house last week. Some are SO cute! Chris and I have to pick out what we want. They are very expensive. Once we pick one that we like the best, we will get a whole bunch of wallets made so we can send them to everyone. You all can just send me an e-mail with your home address and I'll send you one. Hopefully it will only take about a week to get them made.

I've got to run - I want to go sit with Kevin. I'll give him kisses for you all!

Thursday, May 12, 2005 10:59 AM

Kevin is doing OK. He's very itchy right now because of all the Fentanyl they are giving him. They just gave him some Benadryl to help with that. He is still on a respirator and it is being mixed with some other gas - nitris oxide or something like that. That extra gas helps his lungs expand. They turned it off a little while ago and Kevin's sats went WAY down. So they had to turn him back up on it. Maybe by tomorrow. They are weaning the oxygen on the respirator also and he's tolerating that fine.

He came out of the cath lab around 3pm yesterday. It was a very long case for them. He had gone in before 8am. Dr. Ringel said that he was pleased with the results to the right pulomary artery (PA), but there is nothing he can do with the left one. He said that he is finished with the left one and he won't attempt to do anything with it. It's too small and doesn't respond to his treatments. He said from a cardiac standpoint he is OK with one good lung. The right lung is bigger and provides more blood than the left lung. He said that Kevin will do just fine with one good PA. He said Kevin can go for a couple of years without any further intervention. Our problem is - that's not good enough. As it seems now, Kevin's sats will never get high enough to withstand a liver transplant. The surgeon told us that we need to be realistic and know that Kevin may never get to that point. He said that he doesn't think that he can do anything else for Kevin surgically. He was disappointed with the results from the heart surgery. It's depressing - but you have to have some hope. Chris and I still have hope. My thinking is that we will bring him home and let him grow some more. Maybe his PA's will grow with him. His liver is functioning the same as it was a year ago, so it's not getting any worse. We'll just have to wait and see what happens. That's all we can do - pray and wait. Know that every day that we have with him is a special gift.

By the way, I grounded him yesterday and took away a car. The cardiac arrest stunt he pulled freaked us out. He's down to 10 cars. Our friend from down the street gave him an outfit that says, " Stroller today, mercedes tomorrow". If anybody's gonna get a mercedes it's gonna be mommy!

When Chris and I left the hospital last night Kevin was having issues with his blood pressure dropping. We asked if Kevin was giving any signs that he may go in to cardiac arrest again and the doctor said it was quite possible. But Kevin did fine last night. Chris and I will be leaving earlier today so we can take Gracie to Jeepers and get her home in time for a tubby. We haven't been able to spend much time with her these last couple of days. We get home before 9pm and she comes home to sleep.

We don't have any idea how long Kevin will be here - probably up to 2 weeks. He's very sick right now. But he'll pull through - Chris and I have no doubt about that. I told Kevin that Mommy has to go back to work on Monday so he needs to get better and discharged by Sunday. I guess if he doens't listen to me I can take away another car!

Chris and I read your guestbook enteries every night. Thank you so much for writing and for keeping all of us in your thoughts and prayers. We can't tell you how much we appreciate all of you. I'm in the library right now at the hospital and I've got to go spend time with my baby boy. I'll let you all know how he's doing tomorrow. Take care!

Wednesday, May 11, 2005 10:02 AM CDT

Good morning! It's 11:08 our time. I just spoke with Karen. Kevin is still in the cath lab and will be for a couple more hours. His right pulmonary artery which already had two stents in it was partially collapsed. They have put in another stent for a total of three in his right artery. They couldn't get the cath to go into his left pulmonary artery and were about to give up and have to take him back into the OR but then it went in. They will be putting a stent in his left pulmonary artery today. This is the one that they did not do while he was in surgery yesterday.

They do not know if the partially collapsed artery is what made his heart stop this morning. They are not sure exactly why it happened.

Karen said he is stable at this time.

I will update again later in the day when he is out of the cath lab.

Aunt Theresa

Wednesday, May 11, 2005 8:30 AM CDT

Hi! This is Joanne, Karen and Chris'friend.

Last night they had problems keeping Kevin sedated, so they had to paralyze him. At 5:00 this morning, his heart stopped and they had to give him chest compressions for 30 seconds to restart it.

They called Karen and Chris at 6:00 this morning to notify them. They are not sure why this happened and are keeping a close eye on him. He is in the cath lab, as I write. He should be there for 4-5 hours. They told Karen and Chris that the heart surgeon is on standby in case they have to open him up again. They are prepared for any emergencies.

I (or Aunt Theresa) will provide updates when known.

Please keep Kevin and his family in your thoughts and prayers.

Tuesday, May 10, 2005 2:55 PM CDT

Good afternoon! Hope everyone is having a good day. KEVIN IS OUT OF SURGERY! :) They did replace the conduit but not the stent. When I talked with Karen, Kevin was in recovery and her and Chris would get to see him in about 20 minutes. They could hardly wait. The heart surgeon told Karen that he wasn't very optimistic about the way things went today. Not clear as to what he was saying, Chris asked if he was giving up on Kevin. The doctor said that he wasn't exactly giving up but he wasn't sure if there was much more he could do for him. His pulmonary arteries are just too small. They will still be placing the stent in the cath lab hopefully before he is released.

Karen and Chris were going to stay until Kevin was settled in the NICU. I'm sure it will be very late when they get home.

I wanted to thank EVERYONE for your caring words and support for my sister and brother-in-law. There are not enough words to express how much it means to them.

Have a good night everyone and please continue to keep Kevin in your prayers.

Aunt Theresa

Tuesday, May 10, 2005 11:35 AM CDT

Hello again! Karen called right before I went to lunch. Both doctor's agreed that it was not safe enough to put the stent in at this time. They will be replacing the conduit today. The stent will hopefully be done in the cath lab before Kevin is released from the hospital to come home and recooperate. He is stable and doing well at this time.

The fact that they are not putting in the stent at this time does not shorten the time he will be in the OR. It is still going to be 8-10 hours. Karen and Chris are holding up fine. They have had alot of visitors come by. Employees at the hospital that know them come by to see how they are doing.

That's all for now. If I hear anything, I will update.

Aunt Theresa

Tuesday, May 10, 2005 9:05 AM CDT

Good morning! Karen and Chris got to the hospital at 6:00am. Kevin had his first ride in his new car seat. He's grown out of his rear facing car seat and is now a big boy facing forward. Karen took out his NG tube this morning since he couldn't have food and he's more comfortable without it.

After check in, they went to pre-op to meet with anesthesiology. The Chief of the division is in the OR with Kevin today. Karen and Chris went back to the OR and they put Kevin to sleep while Karen was holding him. They laid him down and kissed him goodbye. This was about 7am. They did all the pre-op prep stuff like putting lines in and at 8:55am, they made the incision. They will be calling Karen and Chris every 1 1/2 hours with an update.

Karen is going to try and call me after lunch so I can update the website.

Gan saw Father Valentine at church last night. He is the one that baptized Kevin at Shady Grove when he was born. He also came by the house a couple of times to see Kevin. He is going to ask for prayers for Kevin today.

As always, thanks for your continued support and prayers! He's a REAL special little guy!

Aunt Theresa

Monday, May 9, 2005 4:25 PM

We had a lovely Mother's Day. I still had to do some dishes, laundry and change some diapers (I thought I would at least be able to get off without changing any diapers for the day). But it was nice. We had a cookout at my Mom and Dad's house (a whole 50 feet away from our house.) My sisters came with their kids and Chris' mom and brother came by. We had bought squirt guns and water balloons to play with. We took Kevin's exersaucer down and put it in the shade. He did EXTREMELY well yesterday. He was up for over 8 hours straight. I brought him in the house at 4pm to give him his medications and change him into something cooler and to see if maybe he would lay down. He didn't want to lay down. So, we went back to Mom and Dad's house. I sat him on the floor in my parent's living room and his cousins all knelt around him and he was having so much fun. He really showed off yesterday. Shaking his head yes over and over, doing "so big" and playing peek-a-boo. (I don't think I told you all that he does that - peek-a-boo...he takes his cloth diaper and holds it up over his head, covering his face and then he pulls it away. He's so darn cute. He's made so much progress in the last month alone. He sits up for hours at a time and can lean and reach for things. It's hard to think that what he will be going through tomorrow will set him back.

We had pre-op today. We just got home at 3pm. It was a long day. Blood draws, x-rays, admitting and a meeting with Dr. Vricella. He was the surgeon that was so upbeat before and thought he could help Kevin. I don't know what his problem was today. He was still very pleasant and nice - but not so optimistic as before. It hurts to have someone look you in the eyes and tell you that your child still may not live after all he's been through. I care to think about it as "one step at a time". Honestly, I don't think that Kevin is going to die. I don't think Chris does either. We haven't thought about that since they decided they could help Kevin. But the doctors aren't so sure. I don't think we have our heads buried in the dirt. I think that since he's survived so much that he can keep going. If it doesn't turn out like we hope and plan, it will really take us by surprise. But I guess it actually shouldn't. I don't know. It's so very confusing. You have hopes and dreams and you say lots of prayers. We just do what we can I guess. Dr. Vricella told us that there is a 10 percent mortality rate for tomorrows surgery. That's a little better than the last one. Although he did say this case is extremely difficult. Kevin goes in at 6am. He should be alseep by 6:20am. They said it will take 8-10 hours. They are going to cut out the middle portion of the conduit and while its o[en, Dr. Ringel will go through it and place a stent. Then they will close up the conduit and close up Kevin. Dr. Vricella said he may place a new conduit on, one that's bigger. He said they also aren't sure when they are going to do about the hole in Kevin's heart. If they mess with that, he will require a pacemaker for the rest of his life. No big deal - but there really isn't any room for one. I guess we just need to wait and see how tomorrow goes. Chris and I will sit in that waiting room again - all day. I only got up once last time to use the potty. I thought my legs wouldn't work after sitting so long. You don't want to leave the room because they might call or something may happen.
Well, I'm going to go spend time with my son. Someone in my family will update the website tomorrow to let you all know how it went and how Kevin is doing. I know he is in your prayers. Thank you so much. He'll do just fine....

Friday, May 6, 2005 7:25 AM

Kevin did OK last night. His normal throwing up. The poor guy threw up this morning and poopied all over Stacy's leg in the process. Luckily she had extra clothes in her car. He had done that to her before so she learned her lesson and kept extra clothes. The couch was a mess too. I need to get that steam cleaned. I had to get to work so I asked Nina to stay with them for a few minutes while Stacy got situated. I've been there before. It's hard when you are home alone and he poops and throws up and everything is a mess.

Gracie is a little stinker...she asked if she could go to Jeepers (a place for kids that has rides). I told her we could go next week when Kevin was in the hospital. Yesterday she said, "Mommy, I think Kevin needs to go to the hospible now." I said, "No he doesn't. Not until next week." She said, "No, he's sick. He needs to go...so I can go to Jeepers." That poor girl doesn't get out much. At least not with Chris and I. We are pretty much stuck at home in the evenings and on weekends. Nina takes her out. So we don't feel as bad. But it stinks. Sometimes she comes up to me (actually, every day) and says she wants to go out somewhere. She gets tired of being at home I guess. So one of us will take her to the park most evenings. It's been too chilly for Kevin to go out. We are going to have a cookout on Sunday and its supposed to be nice out. We'll spend the day outside. Kevin absolutely loves to watch his cousins run around. It'll be a good day. Mother's Day - laundry day, dishes day, clean the toilets day....no rest for the weary!

We wish all of you Mommy's out there a wonderful Mother's Day! Have a great weekend everyone!

Thursday, May 5, 2005 6:38 AM

When I got home yesterday, Kevin was getting his physical therapy. While the PT was still there, the woman came for his pictures. He did good with his therapy. He's making lots of progress. The PT left and the lady got set up in the living room. Nina changed Kevin in to an outfit with pants and a regular top. He looked funny in real clothes. He and Gracie got their pictures taken together. Then he got fussy. Gracie got some shots by herself. Then we stuck Kevin in again and he got fussier. He was happy just sitting there observing - he didn't want to partake. So, I have no idea how many came out good. The woman will send me a folder of all the pics so we can choose from them. I showed Nina her price list this morning. The cheapest thing was a 4x5 for $35! We'll need to take out a 2nd mortgage to pay for these pictures!

Kevin has been doing well. I was diluting his formula because of his throwing up, but I put him back on full strength last night. He's doing fine so far. Hopefully he will keep it up and have a good day today. I need a good day today too. My head hurt so bad yesterday - all day. I woke up this morning with a headache again. I brought plenty of medication that should help today. I took all the Tylenol I had in the office yesterday - and it didn't help. I have to run. Take care everyone!

Wednesday, May 4, 2005 6:30 AM

Kevin was CRABBY last evening. He just didn't want to be in the living room! He sat on the floor and played with Gracie for a little bit, but then he got fussy. If you sat with him on the couch or tried to lay him down he just got worse and would have a fit. I kept turning off his food, disconnected him, and would walk around the house with him. He would calm right down. So, then I would take him back in the living room and sit down. He would start all over again! We went upstairs and watched Gracie jump on the bed for 30 minutes - that kept him happy. When the nurse arrived I told her he was grumpy and she just kept him in the kitchen for a little while. She said that he did fine overall last night. Stacy said he did really well yesterday for her too. Hopefully he will be good today. We have someone coming to take his picture this afternoon! I'm keeping my fingers crossed that he will do well. (And Gracie too.) She'll have her picture taken with him for some of them. Maybe it'll go better than I think....I'll let you all know how they do.

Tuesday, May 3, 2005 7:20 AM

Stacy said Kevin threw up for her a bit yesterday and she had him on Pedialyte all day long - no food at all. She also said he was real fussy. He was fine for Nina and fine for me. I put food in his bag (about 25 percent formula) and he still did fine. When I made his food for him last night I made it half strength and mixed it with Pedialyte instead of water. (Maybe we need to take out stock in the company that makes Pedialyte.)

He was really cute when I got home. He was playing with a bus that had people on it and he was taking them out, one by one, and throwing them aside. But he couldn't get the driver out. He would try his left hand and wiggle it, then cry out and try his right hand, wiggling it. He just couldn't do it and you could tell he was getting irritated. He wouldn't fuss when he was trying, only when he would stop. Nobody helped him so he kept trying until he got the driver out. Then he threw her half way across the room. Last night he also took one of Gracie's necklaces (he loves to play with those) and he put it on! All by himself! He also tried to eat the corner of a puzzle box. He was fine last night for us. But this morning I was told that he threw up a lot last night (5 times to be exact.) Stacy told me this morning that she thinks the nurses on the other shifts don't clean his hickman line when he poopies out of his diaper and maybe that's how it got infected. I'm not so sure about that causing the infection - but I will remind them that they need to clean that line or change the cap if he gets poopy on it. I thought that was common sense - but not too many people have that these days. Oh well. He has diarrhea and I'm sure being on Pedialyte only doesn't help that. That's one reason why I put some formula with it. Plus he needs some calories. I can't just have him on Pedialyte for days.

I also called the dentist yesterday. I want to take Kevin in so he can check him out really quick. (And really quick is all the time Kevin is going to give someone to look in his mouth.) He is going to call me back this morning because he wasn't there when I called. I'm also going to try calling a place that will come to the home to take Kevin's picture. Hopefully it won't be too expensive - but we'll see. If it is - then we'll hit Sears after he recoups from surgery.

Have a great day everyone - take care!

Monday, May 2, 2005 7:48 AM

Kevin had a pretty good weekend. He started having issues with throwing up yesterday morning. He doesn't gag first - he just gets a putrid look on his face and then throws up - over and over. And it burns the poor kids throat so he grabs for his mouth and gets it all over himself. He had several baths this weekend. But he seems to feel fine. After he throws up he's back to smiling in a few minutes. I will go home for an early lunch break today to check on him. I told Stacy to put him on Pedialyte only for a few hours and then add 25 percent formula later if the throwing up slows down. I'm not worried and I'm not calling the hospital. They will tell me to do what I'm already doing. If he doesn't stop in a few days, then I'll send a note to the cardiology nurse just to let her know. I don't think it's anything that will postpone his surgery.

He didn't get to go out at all this weekend. We could have bundled him up, but the breeze would just be too much for him. He absolutely hates the breeze. When it blows in his face he can't catch his breath. Hopefully that will start to pass and we can get him out for walks. I hated having him in so long. I felt like taking him for a ride in the car or something. Anything to get him out of the house...but I didn't. We just kept him entertained in the living room. Gracie helps. That little missy didn't take naps all weekend. She was fine on Saturday - but we paid the price on Sunday night. She's been worse - but it wears you out.

We will probably be taking him to get his picture taken next weekend at Penny's or Sears. I'm not sure yet. Two reasons: First, he scratched himself on the forehead and he has a big scab that I don't want to show on the pictures; and second, I don't want him to catch something before his surgery. I was going to arrange for him to be the first appointment of the day on a Saturday or Sunday so not that many people would be there - but he's never been out to a mall. A normal baby would be fine - but Kevin catches things so easily because of his illness. I just don't know. It would be nice to have professional pictures of him taken. And to have Gracie in some of them with him. I guess it can always wait until after his surgery. (Which is only 1 week away now.) It's scary. Well, I have to run. Hopefully Kevin will start to feel better soon. I know you all will keep him in your prayers. Thanks and have a great day!

Thursday, April 28, 2005 7:44 AM

He's doing well. The physical therapist was there yesterday when I got home. She was VERY pleased with him. Nina said he was really showing off for her. He can do "so big" now. In case you don't know, that's when you say, "So big!" and he will raise his arms in the air. Of course he won't do it for me. I felt like a fool yesterday evening saying, "So big!" over and over while raising my arms in the air and he just stared at me like I was crazy. Two seconds later someone had a piece of paper in their hands and he wanted it and his arms shot straight up trying to get it.

Nina also took him in to the kitchen, put him in his seat and scooted him up to the table. She was giving him things to play with and eat. He is definitely not a "pear" man. Peaches go down a little better. He looked so cute sitting up at the table. Everything ended up hitting the ground. That still his favorite game: "I'll drop it and you pick it up for me."

His day nurse, Stacy told me this morning that he was being such a good boy these last several days and really tolerating his feeds well. He throws up, but it's not too bad. He mostly gags and it sounds worse than it actually is. I think she's enjoying being with him. I just hope she interacts with him more than I think she does. Even if she doesn't, when Nina gets home at 3pm she really gives him a run for his money. It's too bad that Nina can't get her LPN license and get paid $21 an hour to watch Kevin. Wouldn't that be nice? Shoot, I wish I could get it and get paid to stay home with him!

Well, that's about it. He's doing extremely well. Thank God for that.

Wednesday, April 27, 2005 6:47 AM

We weighed that little boy yesterday before his tubby. Drum roll please....20lbs. 14 ozs. (but that's with a diaper on - but it was clean.) He's almost 21 pounds! Can you believe it? We really need to get that weight on him before his surgery. I can't believe that's only 2 weeks away. His feeds are up to 54 cc's per hour now and have been for a couple of days. He seems to be tolerating it well. It seems that he's mostly throwing up when he's irritated.

I don't know if we won the lottery or not. I don't even know how to find out what the numbers were. I don't even have the ticket - Chris does. We wanted to go back to get a couple more chances last night, but Chris got home too late so we couldn't get out. I couldn't take both kids by myself - that would be torture. I had a dream last night that we didn't win the jackpot, but we won $300,000 because we got some of the numbers right (I don't even know if lottery works that way.) Anyways, it wasn't enough for me to quit - but we got an addition put on the house with it. Wouldn't that be nice?

Well, I'm running late today so I can't write more. Sorry. We hope everyone has a great day!

Tuesday, April 26, 2005 6:57 AM

I wasn't available for Kevin's speech therapy appointment yesterday but Nina told me it went well. She learned some things that we can do with Kevin to help with oral stimulation. The therapist told her of some things that are available at Toys R Us - so Nina already got them. She's so good. The therapist said she couldn't work with Kevin too much because she didn't have the orders from the doctor. (Gee, they were only sent to her office from JHH over a month ago!) That's frustrating. I have a copy of them and I will send them to her myself. I will try to arrange it next appointment so I can be there too.

It's supposed to be nice out today so hopefully we can get out for another walk to the corner store to buy another lottery ticket. I used to say that if I won the lottery I would still work. That is definitely no longer the case. I'm so miserable here. I'm actually depressed. That's just not like me. I've talked to Chris and of course I can't quit because of Kevin's insurance. But I'm willing to take a cut in salary (up to half) just to get out of here. But who will take me? I need to be off for Kevin when he needs me. Honestly, I don't think that's been too much. I take off an hour here or a couple hours there and as close to the end of the day as possible. Heck, I'm even here when he's alone in the hospital. I try. But it just doesn't seem to be good enough. I'm working for someone that I know I won't ever be able to please. And that's rough. I was always so good at what I did - but now I can't seem to get anything right. Even when I think I'm doing the right thing, something negative is brought out of it somehow. I just want to crawl into a big hole - but I can't. I have too many responsibilities. This isn't the way I thought my life would be going at this point. But I need to make the best of it I guess. I'm thankful I have the people around me at home who help me out so much. OK, I'll stop whining now...Poor Pitiful Pearl is what Mom used to call us when my sisters and I would feel bad for ourselves.

Kevin had a pretty good night last night. He sat on the floor again with his Mega Block for almost an hour. He kept looking up at me smiling. Oh, that reminds me! He cut two more teeth on the bottom front. Now he has six in the front bottom (plus his molars). I guess that's why he was a little cranky recently. I told Chris that we need to take Gracie and Kevin to the dentist. He'll have to go with me because I can't handle both by myself - especially for their first trip to the dentist. Hopefully it won't be too bad. It's time for Gracie since she's 3 now and I want him to look at Kevin's teeth to make sure they aren't causing him any problems or pain. They look so bad. It's the coloring that throws me off. I don't even have Kevin's dental card - I threw it away because I didn't think I would need it. I guess I'll have to get a new one first.

I hope everyone has a good day today. (Mine started out by having to shoo away 2 big, fat geese from the front door of the building so I could get in! They fussed at me. I think they called me a bad name in Goose language!) Take care!

Monday, April 25, 2005 6:52 AM

We had a pretty good weekend. Very stressful - but it went OK overall. I had asked the nursing company to check with Nikki to see if she would switch Friday for Sunday since they didn't have a weekend nurse for me. They didn't communicate it properly to her. It was all screwed up. She finally showed up at 10pm on Friday because she told them she would work Friday and think about Sunday. (She worked Sunday night for us.) I need to start to speak to her directly when things like this come up because the nursing company had told her something totally different than what I had asked them to. She thought she didn't need to work Friday because he wasn't home - they had just told her not to bother coming Friday. It was all screwed up. But it all worked out in the end.

Friday night Gracie and I stepped out to run an errand. She didn't want to go home. I told her we could go for a walk when we got home. She was excited. So, we got home, I got Kevin in the stroller and she got her baby in a stroller, we grabbed Daddy and went a few blocks to the corner store. As soon as we got there she needed to pee. So, it was a quick trip. There was no potty available there for her to use. So I quickly paid for a Mega Millions lottery ticket - after the poor clerk had to tell me how to do it. And we ran out to come home so Gracie could go potty.

Saturday morning Gracie had ballet. She had fun. It was the third class - but her first because Kevin had been in the hospital and I couldn't get her there. So, while she was in class I sat outside the room and listened to the other mother's comlain about how hard they had it. One woman's nanny was going to be off for 2 weeks and she didn't know what she was going to do. (She was a stay at home mom.) I guess she'll just have to suck it up and watch her own children. Gracie told me last night that she couldn't jump very well for ballet so I told her we would just have to practice. She also keeps asking me what day it is. Then what's the next day after that. And after that. All the way until I get to Saturday. Then she yells, "That's when I have ballet!!"

Saturday afternoon Kevin started having issues with throwing up. I think his tummy just gets tired of working all the time and needs a break. So I switched him over to Pedialyte only for a few hours and he did better. I made his food 1/2 strength for the evening and next day. The next time he throws up too much I will just turn his food off for 30 minutes and see how he does. We didn't have a nurse Saturday night and I decided to watch Kevin upstairs instead of in the living room. He did pretty good. I changed his diaper about 8 times. His rash did just fine over the weekend. It doesn't get worse when you keep him in a clean diaper. He was up at midnight for about an hour and then again at 3am for about an hour. But the 3am time I just left him in his crib and he was happy. He was in there talking to himself and playing. He eventually drifted off to sleep (but I didn't). I was up until almost 5am. I layed there and kept thinking to myself, "He's asleep, now you get to sleep too because he will be up before you know it!" I was tired the next morning - but it wasn't too bad.

It was wet and cold outside so Gracie couldn't play out there Saturday or Sunday. She played with her brother pretty well. It's nice that he can sit on the floor with her and play. I had him naked on his bottom area sitting on the floor. He was playing with blocks. He would pick them up and put them in the correct slot on his Mega Block toy. I was so proud of that coordination he had. I didn't even show him how to do it - he did it on his own. I went to take his picture and he had a little block conveniently sitting in front of his little "peanuts" (as Gracie calls it). He would smile for me but as soon as I clicked the camera button he would stop. Last night he was sitting in his saucer and we were in the kitchen. Chris came in the kitchen to retrieve his dinner and take it back to the living room to be with Kevin. But when he was in the kitchen Kevin made a gagging noise. It wasn't his normal gagging noise. Chris ran in one direction and I ran in the other (our house is like a circle) and we both got in the living room at the same time. Chris picked him up out of the saucer and I looked in his mouth. He was choking on a piece of paper! It wasn't in his throat - but it was in the back of his mouth and it was pretty big. So, no more magazines for Kevin - he had learned how to eat it.

The speech therapist comes today at 1pm. I'm excited about it. I can't be there, but Nina is going to take Gracie home early so she can be there. Kevin was sitting with me last night at the dinner table and he kept wanting to get my food. Gracie had finished her applesauce so I let him lick a little bit off the spoon. Then I just thought "heck with it" and let him have whole little container. He pushed his hand in it and then would lick it off his fingers. It was pretty funny. And REALLY messy. When he was finished he picked up the container of applesauce and threw it on the floor. It bounced. So the applesauce sprayed pretty far. Hopefully the lady today will have some suggestions that we can work with him on. I'll let you all know how it goes.

I have to run. Have a great day everyone!

Friday, April 22, 2005 6:50 AM

It's just a yucky day. I wish I could have stayed in bed this morning. The nursing company called already to tell me that the nurse who was supposed to work this weekend quit. I asked if she quit the company or just Kevin's case. It was just Kevin. Stacy had told me that the nurse told her she couldn't handle him. If she doesn't want to work with him - then we don't want her. Not even if we're desperate for help. So, for now, we have no nurse for the weekend. And I'm sick. It's a bummer.

I'm sitting here, feeling like I've been hit by a bus with a wet right butt cheek. I sat in water this morning that was spilled on the couch. It must have been a lot. I'm uncomfortable. I didn't have time to change. I was late anyways. And I can't leave because I'm the only one here today. Last night I had to give Gracie a tubby because a little boy dumped sand in her hair at school. There was about 2 teaspoons left in the tub. And I still didn't get it all out! She was tired (and sick) and didn't want me to mess with her. So she screamed through the entire tubby ordeal. I was already tired and not feeling well so that didn't help.

Yesterday afternoon I cried for about an hour. Why? It's wierd - I saw a picture from the Oklahoma City bombing and it was that picture of the fireman carrying that little girl with her little white socks on. (I'm going to cry again...) Her head was bloody. I remembered the picture - but hadn't seen it in a long time. I couldn't remember if that little girl was alive. I looked into it further. She was dead. Her name was Baylee Almon. She had just turned 1 year old the day before the bombing. Then I read up on all of the children that had died in that blast. I just kept crying. It was so depressing - it still is. Now that I've depressed everyone else, I'll move on!

The nurse from the Infants and Toddlers Program came by yesterday before I got home. She mentioned that maybe Kevin's rash (which was doing better, but is now worse again) was a yeast infection. Plus Gracie was complaining about an earache and I needed medicine for myself because I thought I had allergies. So Gracie and I went to the store to get medicine for her ear, my nose and Kevin's butt. The eardrops worked really well for her. I was glad that she layed down and handled it well when I put them in. I assumed she would have a fit - but she was perfect.

Kevin did well last night. He didn't throw up at all. But he threw up on me this morning. I hadn't increased his food to 54 yet - I guess I won't for a little while. But I don't think it's the volume that's bothering him. I think his tummy just gets tired of working all the time with no break. But if I turned off his feeds for an hour - that's almost 2 ounces that he will miss out on. He needs those calories. Especially now since he's more active. He was so cute this morning. I was talking to him saying that he was a cute baby and I couldn't understand why the nurse didn't want to take care of him and he just looked at me and smiled. We'll be fine. I'll get rest eventually. It may not be for another couple of years - but it will come. It all comes with being a parent. These kids better treat me well when I'm old and crotchety! Have a great weekend everyone!

Thursday, April 21, 2005 6:40 AM

He's still doing just swell. A little grumpy at times - but that's OK. He's not sleeping during the day nearly as much as he was. He'll take two or three 1 hour naps and that's it for the entire day. He's doing really well with his sitting up too. The physical therapist came yesterday and she was pleased. We are going to start to work on his upper body strength. She showed Nina and I some positions to try to put him in to work on that area. Nina is going to show Stacy today so hopefully she will try to work with him during the day. I'm not so sure she will, but we'll just have to hope she does. Nina definitely will when she comes home each day.

He's only threw up a few times and he's up to 53 cc's per hour. I'll try 54 tomorrow if he does OK today and tonight. He's been having good nights since he's been home. Gracie got up the other night at 3am to wash her hands. (Don't ask me why. I don't have a clue.) She walked to the bathroom and stopped at the top of the stairs and asked where Daddy was. I told her he was in his room. She said, "I hear somebody snoring downstairs." I told her it was Nikki. She said, "Mommy, birds don't snore!" I said, "Not Nicky the bird, Nikki the nurse." She said, "Oh....then who's watching Kevin?" I said, "Good question." That little turkey didn't go back to sleep until after 4am.

We've all been going to the park after dinner the past few days. Judy went with us last night and watched Kevin while I played with Gracie. I'm sure it's not a pretty sight to watch me run all over the basketball court. But we had fun.

The speech therapist will be coming on Monday to see observe Kevin and make a plan for his eating therapy. I just found out that I have a mandatory meeting so I don't think I can be there.

I think that's about it. Not much is going on with us. We just take him out whenever we can and let him see the sights. And try to get him all fattened up for his surgery. Nina and I gave him a bath yesterday but I forgot to weigh him. We'll do it next time.

Tuesday, April 19, 2005 8:25 AM

Kevin is still doing just great. His nurse came back to work today. He had a pretty good night last night too. I've told all of the nurses that they need to change his diaper more often. If they change him at noon and he poops at 12:30 - he needs to be changed. I think they just let him sit for 2 hours no matter what.

I sent an e-mail to Pat Kane this morning re: his surgery date. She said his pre-op is Monday, 5/9 and his surgery will be Tuesday, 5/10. At least he will be home for Mother's Day. We'll get him all fattened up beforehand. She also said that the doctors wanted to wait until he receovered from his pneumonia. Pneumonia? We were told he didn't have that! It's so hard not being able to be at the hospital with him because we don't have a clue as to what's going on. When we are there, then we can speak to them and say things like, "Doctor so and so said he doesn't have pneumonia. Now you're saying he does?" We keep them on their toes. (Heavy sigh...)

I'm going to push his feeds up to 53 today and see how he does. By the way, the streak has ended. He threw up yesterday - but only 3 times and I think it was because he was so upset. He didn't throw up last night. He went almost 2 entire weeks without throwing up. I think that's a record. Oh, he also got a swing yesterday. We just put it up last night so he will get to ride in it today. The place where we got Gracie's swingset gave it to us for free. That was sweet. I had called to get an additional sling swing because the kids always fight over that one swing - so now we'll have two. And Kevin has one now too.

Well, I have to run because I'm at work (bad girl). I just wanted to let everyone know about his new surgery date.

Monday, April 18, 2005 6:31 AM

He's home and doing wonderfully! As you know we had no children on Friday night...I got home and instead of relaxing I had to kill about 1000 ants that found a Cheeto that Nikki bird had dropped on the floor. They went from under her cage around the dining room, through the living room, across the carpet and to the fireplace where they went behind it. Almost all of those little stinkers had a teeny tiny bit of Cheeto in their mouth. So, I figured if I had to clean them up, I might as well vacuum the birds area, and living room, and kitchen, and foyer and den. Then Chris got home. He changed and we went out to Outback Steakhouse. It was nice. After we got home we watched The Incredibles and Chris went to bed. I followed shortly, but stayed up to watch TV. I couldn't sleep. I saw almost every hour as it passed. Then I went in to Gracie's room because I didn't want to wake Chris. It was a long night. Chris and I went to breakfast the next morning and then headed to Baltimore.

Kevin was crying and upset when we got there. He was uncomfortable and had a soiled diaper - really soiled. We got him all packed up and he ate part of his discharge papers. He was so happy. We left there around noon. He stunk so bad we had to crack the windows on the way home. He stayed awake the entire way - we knew he would. As soon as we got him home - he got a much needed bath. Then we had to change the bandage on his IV site because that wasn't sticking very well from when they changed it in the hospital. Then we had to change the tape on his face for his tube. It was falling off I guess and a nurse put some other tape on his face that shouldn't have been used for his face. It was stuck in his hair a little bit. That couldn't have been comfortable. I tried to get it off without using adhesive remover - big mistake. It was fine until I got to the piece of tape that was stuck in his hair. I grabbed the adhesive remover and the rest of the tape job went fine. Then we got him dressed and layed him down....he wasn't tired. "OK, let's sit you up in your saucer to play." He was grabbing for his toys on the saucer as we were just getting ready to stick him in it. He played for a couple of hours. He didn't rest until after 4pm!

The nurse said he had a really good night his first night. (But he didn't last night.) He was up until 2:30am. It probably bothered her because she wanted to sleep herself. Too bad. Anyways - Sunday he had lots of visitors. He had a busy day. He took a nap in the morning and didn't go back down until after 2pm. We spent some time outside and even went for a walk last night after dinner. I sat him in the grass out back - he didn't like that. But he was really cute just sitting there all by himself. Such a big boy! We put him in the swing at the park and he enjoyed it for about 5 minutes. I would get in front of him and ask him if he was having fun and he would just smile. When he got grumpy we went home. Gracie hadn't had a nap yesterday so she was pretty grumpy herself.

The nursing company called yesterday and told us that the day nurse (Stacy) had to go to the hospital and was admitted because she passed out. And asked what I wanted to do about this week for coverage. I called Nina and she said she would take care of them. We told the nursing company that we had the week covered - but they needed to find someone else for the job and get someone oriented with Kevin. It is early in the nurses pregnancy and she seems to be having some problems. Nothing major - but we need a nurse that we can depend on. Then we got a call last night after 8pm from the nursing company saying that she wasn't admitted and she was going to work this week. I said that she should take one more day to make sure she's feeling better. Nina has it covered. Then Stacy called last night after 9pm and said she wanted to work and she was fine. She said she misses Kevin. Fine - but Kevin can't dial 911 if you pass out here. He's getting smarter - but he's not that smart yet. So she will come back tomorrow. I didn't enjoy getting up so early this morning to relieve the nurse (5:30am). I know, I know - some of you get up that early. But I normally don't. And I don't get a sound nights sleep either. Although I have to say I slept pretty well Kevin's first night home. Better than when the kids were gone. But I have to say, you sure can get a lot of things done that early when nobody is there to bother you. Dishes, laundry, clean the kitchen, Superglue your fingers together...

Kevin had a pretty good weekend. He's happy to be home. He's much more comfortable and he's sleeping better. We are VERY happy and excited to have him home. Although we're tired - it's all worth it!

Friday, April 15, 2005 6:46 AM

Kevin had a good day yesterday. We are so ready for him to come home. Gracie missed him at first, but then she realized she got to do more things (like go out to eat) when he wasn't home. So she told me the other day that she didn't want him to come home from the "hostible". But yesterday she asked me what day it was and I told her "Friday". She said, "Oh goody - my brother comes home tomorrow!" That made me feel better. She is going home with Aunt Theresa this afternoon and her Aunt Linda will be picking her up from there for an overnight stay with her cousin. Chris and I will be alone! We are going to go out to dinner and watch a movie. I'm going to watch "The Incredibles". I bought that some time ago but never had a chance to watch it. Poor Chris will be asleep by 9pm at the latest. I'm sure I'll be down for the count by 10pm. We're getting old - we can't handle late nights. Then we'll get up and get Kevin in the morning. I'm so excited! I just hope we receive all of his medications on time (IV antibiotics). I always stress about having everything together before he comes home. It usually works out. We already have nursing in place for this weekend (evenings). And his normal nurses will be back on Monday.

The nurse yesterday told me that he was "awake and over there playing with himself" when I called. It made me giggle - how mature. She said he took a long nap yesterday from noon to 4pm. We had been getting him on a schedule - but that is totally screwed up now. We'll have to start over again. Oh, his physical therapist is coming next Wednesday (I forgot to tell you Nina - 3pm). She is very excited to work with Kevin. I told her about him sitting up the other day and she was very pleased. He will also start speech therapy for eating. I haven't spoken to that lady yet. She will also be coming next week, but I don't know when. He will get therapy once a week from each type of therapist. It's funded by Montgomery County (thank goodness). I have to run now. I will write on Monday - have a great weekend everyone!

Thursday, April 14, 2005 7:00 AM

Kevin is doing great. I saw him yesterday afternoon. He was asleep when I got there so I woke him up! I am thinking about taking away another car though....On my way in I was hungry because I hadn't eaten. I thought about getting a hot dog from the man on the corner. But I decided not to because I would end up with mustard on my shirt. Thirty minutes later I had a big pee-pee stain on my right boob. That's worse than any mustard stain. Also, he hadn't pooped almost the entire time I was there. Key word being "almost". That was a good thing because he had been having diarrhea. His bed was all changed and clean and I layed him down after holding him for 4 hours and he got upset with me. Then he pooped. EVERYWHERE. On his pacifier, his clothes (that I had just changed after giving him a bath), his boppy pillow, 4 blankets, the wires to his heart and pulse ox monitors, his feeding tube...you get the picture. And nobody was around to help me. His nurse had gone for a break. I eventually got him all cleaned up - but he screamed the entire time.

He also sat up for a long time unassisted! I sat him in his crib and gave him things to play with and he sat straight up for about 5 minutes before he fell backwards. Then I pulled him back up and he played some more. He had fun. I was very pleased with how well he sat up. (I think I forgot to tell his daddy about that - I'll have to call him at work!) He smiles at everyone who walked in the room. He was awake and playing with me for 4 hours and it was time for me to go so I layed him down again. I left his diaper off because his rash isn't doing as well as I thought. He cried. A lot. The only thing I could do was to walk away out of his sight so he would calm down. And he did. But I felt bad about it. I waited until he was almost asleep so I could give him a kiss goodbye. I didn't want him to think I left without saying goodbye so I didn't want to wait until he was totally asleep. He looked at me and then closed his eyes. So I left.

The doctors said he could come home today or Friday, but I can't take off work. Chris could maybe take off on Friday, but there wouldn't be anyone to go with him to get Kevin. So he'll be coming home on Saturday. He will be on IV antibiotics for 10 days. By the time he comes home, he will only need 3 days of home IV. That won't be too bad.

His heart surgery has also been postponed to the 2nd week of May. I don't have a date yet. Nobody from Cardiology has spoken to me - the doctor on the General Pediatric Service team told me this yesterday. It's not because of the infection in his central line, it's because of the bronchial infection he has. He has to be totally free and recovered from that viral infection before surgery or it could really hamper his recouperation after surgery. That's fine with me. That will give us time to put the weight back on him that he lost in the hospital this trip. I'm gonna go call and check on our boy now. Take care!

Wednesday, April 13, 2005 6:40 AM

He's doing just fine. The nurses are having a good time with him because they normally don't see him in a good mood. Stacy and Nikki (our M-F day and night home nurses) went to see him yesterday. They stayed for about 2 hours. I had asked the nurse that afternoon if he was being held or if he was just laying in the bed all day. She said, 'Oh no! A lot of the nurses come by and visit him and hold him." That made me feel better. She said the doctors from the 3 different teams that have him are arguing whether or not the line should stay in or come out. The surgery team wants it left in, Cardiology wants it out and GI hasn't said anything. I asked the nurse if they realized that Kevin does not have any other options for IV except a peripheral IV (stick). Those only last a couple of days for him. Plus he wouldn't be able to come home. I think they are going to leave the central line in his chest and let him come home with IV antibiotics. They just need to make their final decision and let him go. He only has 2 more weeks until his surgery. We need to get him home so he can be comfortable before he has to go back in there.

I didn't call last night before bed because I fell asleep. I called early this morning and the nurse said she was wondering what happened to me because they all know I always call. She said he had a good night and he was up at the time I was talking to her. She said he was trying to talk to her and smiling. I'm going to try to go see him today if I can. I'll give him hugs and kisses from everyone when I finally do get to see him! Take care!

Tuesday, April 12, 2005 6:50 AM

The other night Kevin had issues with high Potassium and required an EKG. Everything is fine, but they have discontinued his Potassium supplement that we were giving him twice a day. His rash is much better since he's been diaperless for several days. They have started to put a diaper back on him so I hope it doesn't come back. He is down to 19 lbs 6 ounces. He isn't on full formula yet. It's diluted with Pedialyte so he isn't getting all of his regular calories. I sent a note to his nutritionist to ask about increasing his volume and she wants him to go up to 54 cc's per hour now instead of 52. I'll do that once he comes home. Chris called yesterday evening and the nurse said that Kevin definitely wasn't coming home today and the doctors don't know when it will be. Hopefully soon because I can't see him and it's killing me! I told Chris this morning that I was feeling depressed. Between work and what's going on with Kevin - its starting to affect me. It'll pass - I hope.

So they said they are going to definitely treat Kevin for his infected line - through his infected line! That's best for him because he won't have the pain of a regular IV. But Chris and I want to be sure that this will work and he will be able to proceed with his surgery and not have any "bugs". They have switched his antibiotic as of yesterday so I guess that's what they are trying to figure out before he is released. I tried to call him this morning to check on him but they didn't answer the phone. Let me try again now - hold on -

OK, they answered. His nurse was giving him a bath and he was FURIOUS! I could hear him screaming in the background. My poor baby. I want to go hold him. Screw it - maybe I'll take off 1/2 day early tomorrow and go see him for a little while. Heck, I want to leave now! I sure wish I didn't have to work. But we enjoy things like eating, heat and electricity - so no job isn't an option. Plus I carry the health insurance.

I better go. I'll give you the news on his release when I hear it. Take care and I know Kevin is in your prayers.

Monday, April 11, 2005 6:46 AM

That poor baby had such a bad weekend. We didn't get to JHH until after 10pm. They took us by ambulance and Chris had to meet us there. We weren't admitted until 2am. His fever had started to come down at Shady Grove - but only to 100.7. But you could tell he felt better without the high fever. He was so miserable - constantly crying. By the time we got to JHH, his fever was back up to 103.5. He hadn't slept hardly at all - not even in the ambulance. He needed oxygen because his sats were too low. But not scary low. When we got to the room we asked that his diaper be kept off because of his horrible rash. I had kept it off at Shady Grove when I could. It was very messy. They hooked two hoses up to oxygen: one to his face and one to his hiney. He didn't fall asleep immediately. We weren't leaving until we knew he was comfortable. Then when we tried to leave, the doctor saw us and asked us to stay because they wanted to ask more questions. We got home after 3am, in bed at 4am, and back to the hospital at noon. Friday was horrible for him. He cried so much and so loud. There wasn't anything that would please him. We would get him settled in his crib and when he saw me he would freak out again. Chris had to be the one to calm him. It hurt my feelings a little. He was the same way on Saturday and Sunday - but it got better each day. Kevin's eyes were very swollen on Saturday and he had yellow tears. They told us that he was probably swollen from the crying. Of course that wasn't it - but you have to prove it to them. I said, "He's cried worse than this before and I've never seen him get swollen." They said to give it time. "OK, after we give it time and he's still swollen are you going to look in to it?" And yes, he was still swollen that afternoon and it was just getting worse. Nobody had a clue as to why. They did some tests. By yesterday it was getting better - but still swollen. Not really much news as to what the plan is. He is on antibiotics 3 times a day. That's keeping his fever away. We don't know what's causing the diarrhea. They took 3 cultures. Two from his line which grew bacteria and one from a stick to his ankle, which as of yesterday, grew nothing. That means that his line is probably infected. yes, the line we asked to get taken out. Normally you have to remove it and go with a PICC or IV line. Kevin can't get anymore PICCs. And he can't come home with a regular IV line. The interns said that they can treat the line through the line itself and leave it in. They said they have never done it before - but they've heard its been done. Oh great. We told them our main concern was Kevin being bug free for his surgery. These kids don't know what's going on. They don't really have a clue. Yes, kids - I swear they are all like 20 years old. Chris and I couldn't be at the hospital today because of work. Hopefully they will be able to treat Kevin through his line and he can come home on antibiotics. I should hear something today. If they can, he should be home in a day or so. We hope and pray. We thank God that He has gotten Kevin through this - again.

Friday, April 8, 2005 10:30 AM CDT

Good morning everyone - Aunt Theresa here. Karen and Chris are exhausted! They didn't get home until after 3am.

Karen and the day nurse headed to Shady Grove at 11am, within 1/2 hour or so they had called JHU for ambulance to transport him. They wouldn't let Karen and Chris bring him because he had coded one time. At 1pm they told Karen that they would be there by 5pm. Not there at 5pm, or 6pm, or 7pm or 8pm. They claim they were stuck in traffic. They arrived at 9:40pm. So...Kevin was admitted late last night early this morning to JHU for high fever, 103.7 and possible pneumonia. Originally the doctor's at Shady Grove said it was pneumonia but JHU doesn't think so. His fever went down a little and he felt better, then it went back up by the time they got to JHU. The JHU nurse said he was doing fine this morning except for diarhea. He will probably just being staying for the weekend. He's back on the 6th floor, his old stomping grounds.

Karen will update when she can but it may not be until Monday.

We'll keep you posted. Keep up the prayers and well wishes.

Thursday, April 7, 2005 7:36 AM

Kevin isn't feeling well these past 2 days. He's been fussy and coughing a lot. He gets mucous up when he throws up, but he's still congested in his chest. He's not sleeping well at all because of the cough. And he developed a fever early this morning. He was given Motrin at 3am, but at 7am he still had the fever. He will get another dose at 9am. I'll check on him by 10:30am or so to see if it went down. If not, he'll probably need to go to the doctor. Maybe some chest x-rays to check for pneumonia. He can't get sick now. He has to be well for his surgery. He didn't sleep hardly at all for Nina yesterday or for the nurse last night. Gracie, Kevin and I went for a walk to the park last evening. We picked up Pop along the way. We sat at the park and Kevin sat on my lap while we watched the kids play basketball. When we got home Kevin was full of smiles. He would smile and Chris would laugh at him which would make Kevin smile even more. He's so adorable.
Well, keep your fingers crossed that he feels better soon. I'll let you all know how he does.

Wednesday, April 6, 2005 7:51 AM

I only have a minute because I'm at work. When I got home yesterday I thought Nina would have the kids on the porch since it was so nice. They weren't. Then I went inside and they weren't in there either. So I figured they were out at Gracie's swing set in the back yard. Nope. They had all gone to the park and I had the house to myself! That hasn't happened in months! It was only for about 15 minutes - but it was nice and quiet. They came back in because he was irritated with the sunlight. He got a sunhat on and went back out for a little bit. I was surprised that he kept the hat on. I took a picture of it - I'll get the film developed eventually and get it posted. He was so cute. At dinnertime he layed down for a nap and Gracie and I watched the Easter Beagle while we ate dinner together. She wanted to go back outside afterwards, but I couldn't leave Kevin so I stood by the back door and watched her play. Chris got home and went out with her. He ate his dinner while he played with her outside. Kevin woke up so I figured I would take him outside to watch them. He was fine until a little gust of wind came and blew in his face. That really irritated him. So I just kept on walking through the backyard and into Gan and Pop's back door. They enjoyed it. Kevin kept smiling at them and we showed them how he can sound like an Indian when you put your hand up to his mouth and tap it over and over. He can do it himself too, but he uses his fist. I have to get it on video. I'm not sure if I explained that well - its hard to describe. He eventually pooped so we had to go back home. We have no nurse today so Nina has both kids. I will go home at lunchtime to cover so she can go to an appt. She can definitely handle it. Well, I've been typing too long. I've got to get some work done! Bye!

Tuesday, April 5, 2005 7:21 AM

I received a bunch of phone calls and e-mails yesterday because I didn't have a chance to update. Sorry about that. Kevin is doing just fine. His weekend was fussy. He wanted to be held a lot. I think it has partly to do with his horrible diaper rash. He spent most of his weekend naked from the waist down. We had several messes. But nothing major. It's getting better - slowly. I ask the night nurses and the day nurse to let him sleep without a diaper. I don't think they do.

Kevin did get a car taken away this weekend, but I can't remember what he did. Doesn't matter - he's down to 12. He was in a really good mood this morning when I left. He was smiling and cooing. He didn't really smile this weekend. Actually, he didn't smile at all this weekend. I guess he can't feel good all of the time. I know I wouldn't be in a good mood if my liver was failing. But he sure has come a long way. I was looking through my old e-mails yesterday and I found a picture of Kevin when he first came home last year. He wasn't even 9 pounds. He had almost no hair and his little thighs were the same size as his calfs. So skinny and sick looking. And full of bruises from the shots and IVs. He needs a tubby today so I'll try to remember to weigh him beforehand. He's got to be 20 pounds by now.

The nursing company called after 10pm last night to tell me that his day nurse needed to be off Wednesday and Friday. They said they could send someone for an hour today to meet him. That wasn't acceptable to me. Someone can't come for one hour and learn what Kevin likes and dislikes and know how to take care of him. He would have a miserable 2 days because he won't know this person. Nina said she could watch him. What would I do without her? I'd probably be bald from ripping my hair out. And insane - I would definitely go insane.

I can't believe its only 3 more weeks until his surgery. That time is going to go by so fast. His pre-op is Monday - I guess that's when they will go over the procedure with us. We have no idea how long this will take. The last one was 9 hours and Dr. Vricella had such a hard time. I sure hope it's better this time. I don't want to think about it anymore. I get nervous and my tummy gets upset. I have to get to work anyways. Take care everyone!

Thursday, March 31, 2005 6:51 AM

I couldn't update yesterday because we had no nurse. I was called at 5:30am and they told me Stacy wouldn't be in because she had to go to the ER due to some complications. OK, thanks - then I asked Nikki to stay until 7am and I jumped back in to bed. Gracie didn't open her eyes, but she said, "Mommy, is today Wednesday?" I told her it was. She said, "So is Daddy coming home today?" I said, "Yes" and she replied, "OK, good" and went back to sleep. She really missed him. So I asked Nina to split the day with me. She took Gracie and came back at 11:30am so I could work 1/2 day. Nina said she thought Stacy was pregnant. I had no idea - I never see her standing up. I called the nursing company that afternoon to check to see if Stacy was OK. They said they hadn't heard from her and they would call me back. They never called. Chris called last night. They said that it was just precautionary and, "You knew she was pregnant right?" Chris said, "No." They said she was fine and would be in today - which she is. I acted like I didn't know anything and asked her what was wrong yesterday. She said, "Well, I'm pregnant." I asked how far along. She said, "Five months." I asked if it was a secret or something. She said that she wasn't happy with it so she wasn't talking about it. I told her that the nursing company needs to find someone in the next couple of months then. She said she was due August 5th and would work until the end of July. How can she? She can't lug around Kevin - he's too heavy. She disagreed. I will talk to the nursing company later on - I don't want to deal with it now. She said she would take off 6 weeks and if they couldn't find a permanent replacement then she would come back and take care of Kevin after those 6 weeks. I'm getting a headache...

My headache is going to get worse now....Monday afternoon I called to check on Kevin. Stacy told me that Connie from hospice was by to check on him. Connie? I couldn't remember who that was. I thought it was an older lady and said, "OK - what did she have to say?" Stacy told me that Connie said he was sleeping too flat on the boppy pillow and that she had told you before about it and she didn't understand why you didn't listen to her. NOW I REMEMBER CONNIE - it wasn't who I thought it was - it was that snotty hospice bitch that I can't stand! She's so condescending. I asked Stacy what exactly Connie wanted for his sleeping arrangements. Connie wants two boppy pillows on top of each other. That won't work! He would be sleeping sitting up! I was so irritated. Stacy said Connie seemed annoyed with it. Connie doesn't know what the heck she is talking about. Gosh - she makes me so angry. I don't appreciate her coming in our home and telling me that I'm not taking care of my son properly. She is the one who kept telling me that I wasn't laying him properly to change his diaper. Ya know what? I must be doing something right because he isn't dead! Know-it-all twit. So after I got off the phone with Stacy I called hospice. The manager was on vacation this week. I'm going to call her on Monday and tell her that if the other nurses can't make it - then nobody is to come to my house. I do not want Connie coming back - ever. I rather have no hospice visit than have her come. Deep breath...

Kevin did OK yesterday for us. He threw up for me once - but it was a lot and then he threw up for Nina once or twice. Not too bad. He was furious with me because I had to use that 'boogie sucker' to get a boogie out of his nose. He kept clawing at me and pushing it away from his face. I got it - but I didn't know it. I looked in it and I couldn't tell. So I squeezed it. A big old boogie shot out of the sucker and right past Kevin's head onto the floor! I could have poked his eye out with that thing! He felt better though. Good thing I wasn't aiming it at my face. Could you imagine? It would be just my luck.

I filled out the paperwork for his surgery next month and got them off in the mail. I'm starting to think about it more and more. It upsets my stomach. And I think about how far he's come - and how far he still has left to go. That part depressed me a little. Well, I have to run. I hope everyone has a great day! I think I will start to update every other day rather than every day - especially since not too much is going on with Kevin right now.

Tuesday, March 29, 2005 7:25 AM

We did just fine last night with Chris gone. Nina stayed until it was time for Kevin to take a nap and then Judy came up at 7pm and stayed until the nurse arrived. Gracie had gone upstairs to play in her room and went potty. She came back downstairs with just a shirt on and asked if she could have a tubby. Judy gave it to her and I got a few minutes of quite time before I had to wake Kevin up. He woke up in a cranky mood. I guess he was still tired. He stayed awake and we layed him back to sleep shortly before Nikki arrived.

He had a good night. He threw up a couple of times. But thats because he doesn't like you to change his diaper in the middle of the night and he gets so upset. Nikki told me that Stacy (the day nurse) called her last night. She said that she didn't think the weekend night nurse knew what she was doing and she wanted to talk to Nikki in the morning. Stacy didn't say anything to me about it. I had drawn up the medications for the weekend nurse for both nights. If I don't know you, then I don't know that you can correctly draw up medications. I do it for our other weekend nurse too because she always comes tired. If you are tired - I don't trust that you can draw them up correctly. Gosh - I want Kevin to get better so he can be normal and we can get these people out of our house! Some are good - but some just aren't.

I have to run now. Take care everyone!

Monday, March 28, 2005 7:19 AM

We hope everyone had a wonderful Easter! Ours was a little hectic - but enjoyed. I had realized yesterday that Kevin has been home with us for 1 year. He was home last year for Easter - but he was in so much pain from the cholangitis and was returned to the hospital for 2 weeks. He had a really good weekend this time though. Friday night he didn't throw up at all for Nikki. Then he didn't throw up at all on Saturday. Saturday night we had a new nurse. She did OK. We all have to get used to her and her to us. Especially Kevin. He woke up in the middle of the night and she said he looked at her like, "Who the heck are you?" And then he cried. He cried a lot for her Saturday night. I only came down once to check on him. The other times I just let her handle it. He always settled back down. He threw up for her only a couple of times and that was because he was crying so hard.

Yesterday we went to Gan and Pop's house for brunch. We took Kevin's exersaucer and his portable swing. He stayed in that saucer for hours. He stayed awake and alert watching all of his cousins run around. But of course when it was time for us to eat - he wanted to be held. He kept grabbing for my drink - and I shared. Then he got a piece of cantaloupe. He held it himself and licked it and then started to chew on it a little bit with his front teeth. Then he threw it on the floor. He wants to eat so badly - but we just can't let him yet. I told Chris last night that it stinks to think about all the things he should be doing now if he were a normal child - like running around the house. It'll all come one day. We are just so tired. When you have a baby, you all know they are a lot of work, but then they get older and easier to handle. Having Kevin is having a baby for 16 months. A big, heavy baby. I strayed from what I was talking about....back to Easter....Kevin finally started to get tired and fussy so we put him in the portable swing and put him in front of the TV with Baby Bach playing. He sat there and watched it twice in a row. He didn't fall asleep. While he was in the swing Chris and I went outside to hide eggs we had done for the kids. Over 50 of them. We let the kids go and it took all of 2 minutes before they had them all snatched up. We need to hide them better next year! They had fun.

We went back inside and Kevin was still swinging. Eventually he wanted to be held. OK - but he still didn't fall asleep. At this point he had been up for about 6 hours. He almost pulled all the tape off of his face that holds his tube in so we took him home to change it and let him rest. Chris told me that he would be able to get his finger hooked in the tube close to his nose - but I let it go. So, last night at almost 10pm, I was putting in a new tube. He had hooked his finger in there. Lucky for all of us, I got a new one in on the first try. Then it was back up to bed. Gracie had gone to bed early because she played hard and hadn't had a nap. She went to bed at 7:30pm, but watched a movie until 8pm. That's fine - a normal kids bedtime. But she woke up at 10:30pm and it was like she had a power nap! Her mouth was going a mile a minute and she was wired. Chris and I were so tired. Then she got nasty. It was horrible. A two hour tantrum. She's lucky to be alive! Little tird. Then I thought she would be horrible today for Nina, but she woke up in a fine mood. Chris had already left for work when we was up. But this morning at around 2am she told me that she wanted to give him a hug and kiss and tell him she was sorry. Yea yea kid - fine, please just go to bed. He had to leave today for his uncle's funeral so he will be gone for 2 nights. She'll miss him.

Well, that's it - our weekend update. Overall it was just fine.

Friday, March 25, 2005 12:45 PM

Chris said the doctors appt went fine. Kevin did well with the throwing up issue too. I guess the pedialyte only helped. Chris said that Dr. Lau does not want to take the line out. He said it didn't show any signs of infection and it flushes well so we should just leave it in until the surgery. It's a pain in the butt having that line in - especially if it isn't being used. Chris also said that Dr. Lau didn't have much to say about how Kevin looked. Actually, he didn't say anything at all. I would think he would be impressed on how well Kevin is doing and how far he's come. But that's how Dr. Lau is.

So, I've sent an e-mail to the cardiology nurse who is off for another week. She will run this decision past Dr. Ringel and we'll see what happens. Probably nothing will happen and the line will stay in. Lucky us.

Have a great Easter everyone! (I had to threaten Gracie this morning that I was going to call the Easter Bunny and tell him to skip our house. She straightened up.)

Friday, March 25, 2005 7:28 AM

Kevin threw up a lot yesterday and last night. I told the nurse to put him on pedialyte only for the next few hours. We don't want him throwing up all over JHH. Hopefully that will help him out. I got his bag packed for the trip to the doctors last night - it's worse than packing for a vacation. So much stuff! I'm a little stressed about him going someplace without me - but he'll be OK. I keep looking at the clock - and I will keep looking at the clock until I get a phone call telling me he's home. I have no clue as to when they will put him on the schedule for the OR. Chris has to go out of town for his Uncle Paul's funeral and will be gone for 2 days/nights. I may have to recruit some help.

We had a new nurse show up last night to orient with Nikki. She is going to work nights this weekend. So I won't sleep. The last nurse we had isn't coming back. I guess she couldn't handle it/him. He has bad nights and good nights. He can't be perfect. That's the reason why we need a nurse for him at night. Did she expect to just come over and sleep at night? Whatever - she's gone. We'll move on. Hopefully he won't chase this new one away. We'll give her a chance and see how she does. If she stinks - then they'll have to get me someone else.

I'll update the site this afternoon once I hear from Chris telling me how it went at the hospital.

Thursday, March 24, 2005 6:31 AM

Today is Chris' birthday! He's getting old - 42. We hope he has a good day today. He's thinking about his Uncle Paul who passed away yesterday. He was a nice man. Our thoughts and prayers are with Aunt Susie and their children and grandchildren. It's a huge loss and we think about what they are going through. It has to be so difficult.

Kevin is still OK. He's not really himself. But he's not bad. He's not so fussy - but he threw up a whole bunch for me last night. It was just one time, but it was so much. It just kept coming and coming. I turned his food off for 30 minutes to give his tummy a break. It seemed to work. His Gan came up to help me with the kids until Chris got home from work. I had changed Kevin's diaper and he was laying on the couch. I ran to wash my hands and throw in a load of laundry. He was asleep in the same spot when I got back. Just sprawled out on the couch like an old drunk. Mouth hanging open and all.

Gracie was absolutely HORRIBLE last night. She must have been tired because she played with her cousins at Nina's house yesterday. She didn't settle down until after dinner. I thought she would get to bed early but she caught a second wind and stayed up until 9:30pm. Chris layed with her in her bed so I could take a bath. I got in the tub at 9:30pm and managed to stay awake for about 10 minutes. Next thing I knew it was 10:30pm. I looked like I was 112 because I was so shriveled. And the water was not so comfortable - pretty chilly. At least I enjoyed 10 minutes worth.

Chris is off tomorrow to take Kevin to JHH for clinic with Dr. Lau. The day nurse will go with him. I have to confess that I'm a bit nervous. Kevin hasn't gone anywhere without me. I know his daddy will take good care of him - but I still worry. They should be home after lunchtime and Chris will be able to get a few hours for himself. He needs a break.

I've got to run. Take care everyone!

Wednesday, March 23, 2005 7:25 AM

He's still doing OK. No fevers and the crankiness is not as often. He threw up a lot yesterday for the nurse, but did OK last evening. He only threw up once for me. He was fussy last night for the night nurse. He was having a fit at 4am. I had so much trouble getting back to sleep. I've got so much on my mind and it just kept me awake. I should have just gotten up and gotten some things done around the house. I did get laundry done this morning. If I have a chance to get home at lunchtime I usually try to get laundry done then too. The house is a wreck. A dusty wreck.

Gracie's appt went OK. I told her she wasn't going to get any shots and the doctor was just going to look in her mouth and ears. We practiced sticking out our tongues along the way and saying, "Ahhhhh". She surprised me with how well she behaved. There is nothing wrong with her either. The doctor said she probably got all stuffed up and there was no place for the yucky stuff to go so it came out her eye. She was OK this morning. Just a little tempermental.

So, not much excitement on the homefront. The next thing is an appt for Kevin with Dr. Lau on Friday for pre-op to get that pesky central line removed. That should go OK. It's just a pain to have to take him all the way there for it to be looked at and make another appt for the operation date. What a waste. But there's nothing I can do about it...

Tuesday, March 22, 2005 7:44 AM

He's fine. The hospital had called back and spoke to Nina and pretty much asked what we wanted them to do. I wanted their input - but they didn't have any. She said it was our decision. I had to go home a little early because he had thrown up his feeding tube again. We left it out for a little while to give him a break. He seemed to get better after the motrin kicked in. The fever came down. He needed some meds so we had to put the tube back in. He did OK. It only took 2 tries. Nina layed him down to retrieve his exersaucer from the kitchen. But when she got back, he was already asleep. He slept for 2 hours. It was a sound sleep. Sometimes when he isn't feeling well he moves a lot and whines. Mom made dinner for Gracie and I and then we played with Barbie's in the kitchen sink. Kevin woke up about 7:30pm and he was fine. Just thirsty. I put him in his saucer and he played for an hour. If he hadn't gotten better we would have taken him to a local hospital and gotten some routine blood work done to see if he was developing an infection. We wouldn't have taken him to Shady Grove again. Nina mentioned Montgomery General had a pediatric center so we would have tried there. But, we didn't need to. I guess he just wants to keep us on our toes. He does a good job at that.

Gracie woke up with crud in her eye this morning. Maybe pink eye. Nina said she may have a sinus infection instead and she would take her to the doctor for me. If it's pink eye we need to get the drops anyways. I hope it's not pink eye. I don't want to have to deal with that! I'll call the doctor this morning to see if we can get her in.

That's all folks. We'll just keep praying that Kevin stays well and Gracie gets better too.

Monday, March 21, 2005 2:57 PM

Nina just called from home. Kevin has a fever and his breathing is labored. I've called the hospital to see if he can come in - better safe than sorry. At least get some blood work done. I'll fill you all in when I can.

Monday, March 21, 2005 7:58 AM

It was a rough weekend. Kevin isn't feeling well and is really cranky. By the way, he got weighed on Saturday and he is 19 pounds 9 ounces naked. Almost to 20 pounds. He sure feels like it after you have held him for a few minutes. Your back starts to burn. And he's been wanting to be held most of the time this weekend. He was throwing up a lot so we switched him over to Pedialyte only for a few hours. Then part formula and then full formula by the evening. He had a rough night on Saturday night. Chris relieves the nurse on Sunday mornings now and he said that she looked beat by the time she left. Kevin started out cranky and crying, but I didn't hear him after 11pm. It's not a job where they should think they can come and rest/sleep. They aren't coming for a sleep over - it's a job. And if you are tired and not ready for it - it is hard. So, she didn't come back Sunday night. She called in sick. The nursing company said they couldn't find anyone else. I told them they need to get more people to orientate with Kevin so we have back up. I had to work the next day and watch Kevin at night. So, I took first shift and my mom came up about 1:30am. Kevin is getting to heavy for her but she watched him while I rested in the den. When he woke up or needed a diaper change - I came out to do it. I don't fit very well on a loveseat so I didn't sleep much. But it was better than nothing. Gracie came in at 5:30am and woke me up. The nurse was supposed to arrive at 6am so I went upstairs with Grace. She was WIDE awake. She didn't go back to sleep until shortly after 6am. I got up at 6:30 for work. I wanted to work the morning and go home early to rest. But when I arrived I was reminded of a meeting at 2pm today. I'll just chug a bunch of caffiene and try not to yawn too much at this meeting. I sure hope Kevin doesn't give the nurse a hard time today. I'll go home at lunchtime and check on him and call in a couple of hours.

He didn't have many good moments this weekend. We tried everything to make him happy. When he was in his bouncy seat he pooped. No biggie, but it came out of the side of his diaper...onto the wood floors. In the cracks of the wood floor! Then he mushed it in more by stepping in it and slathering it all over the floor. And this was only about 15 minutes after he had his bath. The kid always had bad timing. The weekend was just rough. Hopefully he'll get over whatever is bothering him and he'll be back to his old self soon. God I hope so...

Friday, March 18, 2005 7:39 AM

Getting Kevin's central line taken out of his chest isn't going to be as easy as I thought. Last time he was already admitted in the hospital, but this time he's home. So I had to make an appointment with Dr. Lau who only has appointments on Fridays. I can't go today because I have a meeting I have to attend. So it has to wait until next Friday. We have to go just so Dr. Lau can look at the line and explain the procedure to us and we sign the consent forms. Then we have to make an appointment for the OR to have it taken out on another day. I explained to the woman that we have done this before and why can't we sign the consent forms the day we go to the OR. They wouldn't budge. I don't want to have to take that much time off of work. Two days because of this IV line. I'm going to see if Chris can take him to the initial appointment and just take the nurse with him. They should be home by noon and the nurse can just stay until 3pm like usual. I guess if I have to take 1/2 day I can - but I prefer not to. I will need time off for Kevin's heart surgery. He also needs a GI appointment. I sent a note to the GI nurse asking if we could just skip the GI appointment for April and just have the blood for his liver labs done at his pre-op appt. I haven't heard back yet. If not, that is another day I will have to take off work. Then I have to take off for the pre-op appt and then for his surgery. His surgery is on a Tuesday and I already requested the rest of the week off so I could be with him. What a mess.

Tonight is tax night for Chris and I. We have someone doing it for us. All this stuff with Kevin makes it not so easy and Chris and I couldn't prepare them. I don't even want to try. We paid over $10,000 for Kevin's care and expenses last year. Hopefully that will help on the taxes. It doesn't hurt so much when you have to dole out little bits at a time. But we can't complain - Kevin has cost our insurance company over a million dollars. That's a bill I would hate to have to pay. I think I'll start playing the lottery. I just have to figure out how because I have no clue. And I'll get Gracie to pick the numbers for us.

Kevin was a little fussy yesterday, but he kept passing gas. That was probably the issue. He had a good night last night. I don't think I heard him once. Probably because I was so tired. Gracie woke me up about 4am asking me to go get her seahorse. I said, "OK, I will." Then she said, "Thank you Mommy" and rolled over and went back to bed. She had watched an Ariel movie a couple of days ago with a seahorse in it so she must have been dreaming about that. She's so cooky.

Kevin gets a tubby as soon as I get home today. I'm going to weigh him first. He must be over 19 pounds. His thighs are really starting to thicken up too. I have to go to the doctors for a check up. I wonder if I can refuse to be weighed. That would probably throw off the nurse. It's not like she can make me get on the scale. They can just look at me and see I'm overweight. I'm depressed enough already. We'll see how that goes. Time for me to run. Have a great weekend and I'll shout to you all on Monday!

Thursday, March 17, 2005 8:54 AM

Just a little bit of drama yesterday. First off, I got a call from the nurse at 9am, he threw up his tube. Fine. I had to take an early lunch break to go home and put in a new one. It was just about time to switch his tube to the other side (we change once a month), so I went ahead and put the tube in the other nostril. I was kinda glad because I have better luck with his right nostril than the left. Not yesterday. That poor kid. It took me 6 tries before I got that tube in. It doesn't help when he's screaming and clawing at me. I stopped and gave him a break before I tried again and he just stared at me and was grunting. It was like he was cussing me out! He was all sweaty and uncomfortable. So, after he calmed down, I irritated him all over again. But I got it in. OK, back to work then. There went my lunch hour. I'm lucky I could do that.

The evening was fine. Gan and Pop came up for dinner and Nina had kept Kevin awake and played a lot so he was tired and slept at dinner time so we could enjoy it. It was pretty good. We had lasagna, garlic bread and salad - even the birds had some. Of course as soon as I put Gracie's plate in front of her she said, "I don't like lasagna!" Her kid better give her as much grief as she gives me. So, after dinner I woke Kevin up so he would sleep better during the night. He didn't appreciate that - but he got over it. We played and he pooped - ya know, the usual. I went to flush his IV before the nurse arrived. It didn't work! I tried a few times. I couldn't draw any blood from it or push anything through. It is past time for it to come out, but I didn't want to have to take him to JHH to get it taken out. So I called the charge nurse on his old floor to make sure he would be OK if I left it in over night. She said it would be, but if they needed to keep using the line, that he needed to have it unclogged. The line needs to come out so I wasn't going to worry about getting it unclogged. So I left a message with the cardiology nurse to call me in the morning. But this morning before I came to work, the line worked. Great - then I wouldn't have to bring him to the hospital today. But I didn't call the nurse back because I needed to speak to her about getting it out anyways and see what's going on with his next surgery. I talked to her this morning and she said she would speak with the doctors and call me back. She did. Dr. Ringel said that if GI wasn't using the line, it should come out. So, I will be hearing from the surgery dept to make a date soon for Kevin to have the line removed in the OR. He won't stay overnight - it will just be a long day. I mentioned something about him having it done at a local hospital but he is such high risk for anesthesia - they probably won't touch him. She agreed that they wouldn't do it and would have to come to JHH. As for the surgery, she had to find a date open for Dr. Ringel and Dr. Vricella since they have to work together in the OR. Plus Dr. Ringel wanted Kevin to be 3 months past the last cath to make sure his lung is totally repaired. So, we have a date: April 26th. I'm already nervous. It's a really big operation for him. Really, really big. It's scary. But, it's a whole month away. By then we should be able to get some more weight on him and get him stronger and bigger. He is so much stronger already. He will sit and watch TV and put his little hand on my cheek - and then smack me a couple of times. Then he gets a grin on his face and pinches my cheek with his entire hand and it hurts like hell. So he is definitely getting stronger. I'm at work now so I have to run. Take care!

Wednesday, March 16, 2005 7:36 AM

Not much to update (plus I'm at work). We were having trouble with the getting results to Kevin's blood work. The last time it did work (after some complaining to the lab company.) His PT/PTT, which was low before and required him to get those 2 vitamin K shots, came back normal so he won't need anymore K shots. His vitamin A, D and E levels came back low so I am waiting to hear from JHH about increasing his vitamin doses. He already gets a lot in volume for those and they upset his tummy. I may see if we can go 3x a day instead of 2x.

He was a bit fussy last night and pooped a lot. He was really pissed off at 4am because he screamed LOUD and for about 5 minutes. The day nurse this morning told me that she thinks he is doing so much better than he was and he's so much more interactive with her. Glad to hear it.

Hafta run!

Tuesday, March 15, 2005 6:32 AM

I'm tired. Last night just flew by. Chris didn't get home from work until 8pm so I was running around like a lunatic for 3 hours. The kids were well behaved, but they had their moments. Kevin didn't want to rest, but he didn't want to play either. He wanted to be held. Sounds easy - but not when you have to make dinner, do dishes, make his formula, get his 7 and 8pm meds dosed and given and try to keep Gracie out of your hair for a few minutes. If he was being held - she had to be held. If he was sitting on my left knee, she wanted to be on my left knee. If I gave him a toy to play with, she had to have it. I would even ask her, "Gracie, are you finished with that toy there? Are you sure you don't want to play with it anymore?" NO. OK, then I would give it to Kevin and she would rip it out of his hands within 30 seconds. I would play with her while I had him on my lap, but she would get rough and squish him a little. Then he got tired. But it was too early for bed. If I put him to bed too soon then he doesn't sleep well at night. So, I kept him up until 7:45pm. He was asleep as soon as his head hit the pillow. He was a little worn out too because I had to use that "sucky" thing to get a big boogie out of his nose. He sure hates that. And man does he put up a fight! But he felt better after it was all over - and of course he threw up on me because he had been screaming bloody murder. He needs a bath today after I get home so maybe I'll get him on the scale. (If I can remember to.)

So, after Chris got home I had to run Gracie up for a tubby. She was overdue. And it was a hair washing night. I didn't think I would have the energy. Eventually I just threatened to cut her hair short if she wouldn't let me brush it. It's not THAT bad. I put a bunch of conditioner in her hair and let it soak in before I brush it. She's just a little dramatic when it comes to her hair. She got some play time in the tub too. And I got to sit down for a change. She was all wound up after her bath. I was exhausted. We went to bed and I struggled to stay up to see the last 10 minutes of Extreme Makeover. I don't usually get to watch TV at night. I see the beginning of that show sometimes and I don't get to see the happy outcome. I'm usually forced to stick an Ariel movie in instead. I thought that I would like an extreme makeover, but honestly, I'm too big. I saw one where a girl was 30 pounds overweight and they wouldn't do it until she lost the weight. And I'm way beyond 30 pounds overweight. Ah well. Anyways, I fell asleep before Gracie did. I was so tired. And she's starting to get in to this licking thing. She licks you sometimes. I have no idea where she got that. It just started this weekend. It's icky. It could be worse I guess. At least she isn't biting me.

Well, off to work. I need a vacation already.

Monday, March 14, 2005 6:50 AM

No major incidents this weekend. It was nice and quiet. When I got home on Friday I immediately noticed that Kevin's hair was cut. Nina got it done and it looks great! He's so cute. He looks like a little man. She saved some of his hair for me in a baggie. His hair is short now, but it's still curly. Chris worked on Saturday so Gracie went to Gan and Pops for the day. Her cousin was there so she had someone to play with. Kevin and I got to spend the day together alone. Just like old times when I was off work. But of course I didn't get anything done around the house. I didn't make much of an effort. Nina came by in the morning on Saturday and told me that I could go shopping. (I mentioned to her that I needed a new coat for Gracie. Plus one for myself since the one I have is from HIGH SCHOOL and it's a size medium, and I'm not.) I got Gracie a new coat and some summer clothes. I bought Kevin a few things, but it was hard to find what I wanted in his size. I need the onsies that snap all the way down the front because of his tubes. And no coat for me. I saw one I liked but the zipper was broken and would need to be replaced. But I bought myself a new tablecloth. Whoopee! Then Nina came by this morning and had gone shopping yesterday and found a bunch of clothes for him. They are so cute. So, he should be set for the summer.

Our neighbor from when Chris and I lived in Twinbrook came by for about an hour. She hadn't seen Kevin since shortly after we first brought him home. She was impressed with him. Aunt Alice got to come by yesterday too. She hadn't seen him in several weeks. Gracie had picked out a flower for her a couple of weeks ago. It was purple and it smelled good. But we couldn't get it to her because we had colds. Then the darn flower died! Mom said it only blooms for so long and then you plant it or something. I dunno, I'm not good with plants. But we kept it and I kept watering it. And it grew - but it still had dead blooms on it. I asked Aunt Alice if she wanted it anyways. She knows what to do with it. Nothing says, "We love you" like giving someone a half dead plant.

I didn't make his next GI appt because I keep forgetting, plus it's going to be hard because Dr. Schwarz only has one clinic day this month. I'll have to try for April. I'd love to see what his weight is now. He gets so heavy when you are holding him. We have that baby scale at home, we can stick him on there. Although he hates that.

Well, time to scoot to work. I hope everyone had a good weekend!

Friday, March 11, 2005 6:56 AM

That baby is doing so great! He's getting stonger every day. He's staying awake so much longer and not as fussy. He seems to be sleeping harder these days too. He used to wake up from the littlest noises. I had a horrible dream about him last night. So bad it woke me up. I dreamt I had him in the kitchen sink for a bath and he could sit up in the tubby on his own. (But it wasn't our actual kitchen sink and it wasn't actually Kevin - but it was in my dream.) His tubby got cold so I put hot water in and left it on while I took care of Grace because she was having a fit over something. Of course that is something I would never do in real life...Then he screamed and the water spicket somehow was over him and the hot water was pouring over his shoulders and down his chest and back. I ripped him out of the sink with one hand because I had Grace in the other and he immediately stopped crying when I said I was sorry and he was fine. Wierd huh? It must have been that icecream bar I ate before bed.

I signed Gracie up for more ballet lessons. They start next month. It's good for her and she enjoys it.

It's going to be a hectic weekend because Chris has to work all day tomorrow. We'll be watching Baby Einstein, Dumbo and Bambi ALL day. I can't seem to handle Dumbo - I watched it last night and I cried! You know that part where the mouse takes him to go see his mom and she cradles him with her trunk and swings him? Jeeez! Gracie was looking at me like I was nuts! Hey, at least I don't cry during Bambi anymore...

You all have a great weekend and I'll talk to you on Monday. (He went up to 52 cc's per hour today so keep your fingers crossed that he tolerates it well.)

Thursday, March 10, 2005 6:56 AM

He's still doing just fine. He was irritated with the hospice nurse yesterday because she had to get more blood from him for some tests. These same tests have been done twice already, but the lab keeps screwing them up. This time hospice said they wouldn't do it and I would have to take him to JHH. Just for a blood draw? That would take over half the day and I would need to take off work. I wasn't willing to do that if I didn't have to. I told them that I would take the blood to another lab and would just pay for it out of my pocket since they didn't take our insurance. The nurse manager at hospice said she would call the lab and talk to them about the problems we've had and that Kevin can't afford to keep having all this blood taken. I had tried to call that morning myself, but it was always busy. So, they got it straight and his blood was taken yesterday. I was told the nurse made a mess. Nina had to get blood off the wall in the living room. Hopefully they will be able to get results this time.

His hair is absolutely out of control (as I'm sure you all can see from the pictures.) I told Nina we needed to get it cut. Chris agreed. But Chris and I won't do it. We'd screw it up. I think maybe Nina will handle that - like everything else. He just needs about an inch taken off all over. We'll see.

He is also getting much better with his motor skills and he's starting to "talk" more. I was told that JHH received the paperwork from the Infants and Toddlers Program to approve his therapy. It needs to be signed by Cardiology, GI and the surgery dept. Dr. Schwarz didn't know why, but she thought Kevin wasn't allowed to take a bottle - and that's something that was on my request for Kevin to learn in therapy, to eat. I told Mary Kay, her nurse, that Kevin was taken off because he was using too much energy to eat and wasn't gaining weight - but that was almost a year ago. She said that Dr. Schwarz will probably want him to have a swallow study. Fine by us. We had requested that a long time ago and we were blown off. They also got a new letter done for my for the leave program here at work. I wasn't renewed for it and I am currently not on it. It's a big mess. I'm trying to get it straightened out. I need to be on that program because of all the time I have to miss for him. I don't have the leave myself. What leave I did earn has been used for Kevin already since I'm not on the program. Ah well, it will work out eventually. Never a dull moment for us. Well, I have to get to work now....but only about 25 more years and then I can retire!!

Wednesday, March 9, 2005 6:52 AM

Well, I looked up info on methadone on the internet yesterday. He had most of the signs of withdrawal. I called hospice and the hospital to see about putting him back on the methadone. They didn't call me back (in the time frame that I wanted them to.) So, I e-mailed a doctor that had some methadone information on the web asking him if he thought Kevin was going through withdrawal and should I put him back on it and if so, what dose? The last dose I had him on? (Which was only 1/2mg - I thought it was 1mg). Before he could respond I got a phone call from the nurse that he had thrown up his feeding tube. So I went home, got a new tube in and gave him 1/2mg of methadone. I just put him back on his old meth schedule and hoped that I would hear from someone soon. That doctor was nice and had responded to my note by the time I got back to work. He said that Kevin was more than likely going through withdrawal and to put him back on the regular dose prior to stopping. The information on the web said that adults who are on a dose as low as 1mg suffer horrible withdrawal symptoms. This doc said it could last 7-10 days or longer. Kevin was well behaved and back to his old self in no time. He was perfect last night. We all slept. Even the nurse....I woke up at 4:30am because she was snoring so loud I could hear it up in my room! I went to the top of the stairs and called her name - she didn't hear me. I went down the steps to the foyer and called her name - she didn't hear me. I went up to the couch where she was laying and called her 3 times before she woke up! After she woke up she looked at me and I said, "You are snoring VERY loud and I can't sleep." Then I walked away and went upstairs - to stay awake until it was time for me to get up for work. At least we got some rest. Except for Chris - he had to get up at 1:30am to go to work this morning.

So, Kevin is back on his methadone and will probably be on it forever I guess. I can't let him suffer through withdrawal. I told Nina this morning that I will wait until he does something like wreck the car when he's 16 - that will be his punishment - take him off methadone!

I'm glad we figured it out and it was a simple fix - but I'm upset that Kevin had to suffer all weekend. I wish the hospital or hospice had told me what could occur after I stopped the medication and if certain symptoms arose - to put him back on it rather than let him suffer. I had no clue that something like this could happen. I thought he was getting sick, or teething. I try to be pro-active and I think I was - but just not fast enough this time. It's a lesson learned.

What did you all think of the new pictures and my little Prince and Princess? I've got some good pictures of both kids to pull out in 20 years to embarass them. I'll try to get more soon. Take care everyone!

Tuesday, March 8, 2005 6:41 AM

I don't know what's wrong with that boy! He got better yesterday afternoon but starting at 8:30pm he got wicked again. He stayed wicked ALL night. He didn't sleep any period longer than 30 minutes and he screamed the entire time that he was awake. I'm exhausted. I went down at 2am to hold him for a little while. He settled down but it took a few minutes. It's such a drastic change from earlier in the evening. He would sit on my lap and watch TV and look over at me and smile, then go back to watching TV. He was so cute. Nina had him and Gracie outside when I got home and he was doing fine. That poor Nina. She was getting ready to leave last night and Chris called with a problem with his van. I needed her to stay so I could go pick him up. She didn't get to go home until 8pm. That's a long day. God bless her little heart for helping us.

Anyways - I called the GI nurse yesterday because there were some problems with Kevin's blood draws that were done last week. I was going to speak to her about Kevin's behavior also - but she didn't call back. I also called the Cardiology nurse last week to ask about his central line coming out but she didn't call back either. It's been in over 2 months. If it stays in for too long he can develop an infection. But I keep my eye on it and it looks OK. The stitches are all falling out but his skin seems to have grown around the line. It has been a good thing to have it in longer this time. But it has its drawbacks.

I forgot to tell you all that my son is no longer a druggie! He came off his methadone on Friday night. Yes, it makes you think that maybe he's reacting to not having it anymore and he's going through withdrawl right now. I thought of that. But it doesn't make sense because his last dose was 4pm on Friday and he had a perfectly fine night his first night without it. He didn't start to get nasty until sometime Saturday. I'm going to look it up on the internet as soon as I'm finished this. He was on such a tiny dose before I stopped because I was weaning him off. He was down to .1 cc's which was 1mg. I couldn't go any lower than that. Heck, maybe it is that. I guess that would be a good thing to figure this out and have him comfortable again. Or, if it is that, let him stay off and finish the withdrawl. But I don't know how long that takes. What a mess. We'll figure it out....

Monday, March 7, 2005 6:46 AM

I have to say that our weekend sucked eggs. Kevin is sick and crying 70 percent of the time and Gracie has been very whiney. VERY whiney. It's extremely hard when you have both kids crying at the same time and no matter what you do - you can't stop them. I'm sure everyone's been through it. It just seems harder with Kevin because you are tied to one place. It's hard to get a shower, let alone get any chores done. We think he may be getting dehydrated and that's why he's so cranky. So we are giving him all the water and pedialyte he wants. Sometimes that settles him - but sometimes it doesn't. He is happy if you walk around with him - but you have to take him off his food pump to do that. That's not a good thing to do if he's getting dehydrated. He cried so much last night. I didn't get much sleep. I doubt Chris did either. And when he wasn't crying in the middle of the night I would wake up thinking he was crying...I was screwed either way.

I don't think he will have a good day today and I don't think his nurse will have the patience she needs. I told her to call Nina or myself if she needs a break. I'll run home at lunch to see him and I'll call every couple of hours. Nina said she would stop back by later this morning to check on them. Mom and Dad are out of town so they can't check in on them. It's a horrible feeling to be worried like this about your kid. Worried that he doesn't feel well and you don't know whats wrong and worried that the person taking care of him won't do a good job. He doesn't feel well - but there doesn't seem to be anything I can do for him right now - except keep him as comfortable as possible and hope he gets better soon. I can't take him to the doctor - she doesn't know what to do with him. I can't take him to the local ER because they don't want to touch him and I don't think he's bad enough to need to go to JHH. Plus, I think they would just send us home and tell us to keep doing what we are doing. He hasn't had any fevers and Motrin doesn't seem to help him at all. Maybe I can have hospice come and take blood today to check his white blood cell count to see if it's elevated at all. If that's in the normal range then I wouldn't worry as much. I'll call them as soon as they open.

Gracie had her recital on Saturday morning. She did great. It was so much fun to watch her. She was pretty uncoordinated - but she tried to hard. And she had fun. We had fun watching her and the other kids. She was the youngest kid in that class - and the biggest. Kevin got to go too. He did very well almost the entire time. When we had about 10 minutes left - he started to gag. I had to take him out of the room. Then I got locked out and couldn't get back in. Ya know, I expected the kids to stare at him - but not necessarily the adults. But they stared just as much. Mom said that it should be expected because Kevin has a tube up his nose and looks different. I don't agree when it comes to adults. But they look at him like he's a little oddity. Then of course, you have people making telling you how to fix him. One guy told me to put him under a bili blanket because he seems to have a touch of jaundice. A touch? Ya think? I know, I know - they are just trying to help. But they need to think about what they are saying before they open their mouths. People have said some of the dumbest things to us. OK, I'll shut up. I'm cranky because I'm tired.

Hey - Nina's son got Kevin's pictures posted for you on the picture page of this site (not the site my sister made.) I haven't checked them out yet. I need to sign out of this update and go look so it can make me smile! That's what I'm gonna do.

I'll keep you posted on Kevin's condition. Please pray that he feels better very soon! Thanks everyone!

P.S. - I didn't kill any little children at Jeeper's yesterday! It was the adults I had to watch out for! But she had fun. I got a headache.

Friday, March 4, 2005 6:27 AM

That boy is so cute. He has mastered a new game. It's called "I'll throw everything on the floor and you pick it up for me." He only drops small things. He sits in his excersaucer and you give him little things, one by one. Then he will pick them up, one by one, and drop them over the edge. He doesn't even look at what he's dropping. He stares at you while it goes over the edge. You say, "Don't you drop that!" And he gives you that 'your an idiot' look and drops it anyways.

Its so nice to be able to look at him and talk to him in a high voice to have him react with a smile. Normally, he would just stare at you. It doesn't take much to get him to smile now.

The hospice nurse called yesterday. She said the blood draws she took Wednesday weren't prepared properly at the lab and 2 of them have to be re-drawn. He also needs blood taken to re-check the vit K levels. She came at 5pm on Wednesday to give those shots. You have to wait 48 hours before you take the blood for the results. I told her Wednesday morning that he would need his blood taken in 48 hours if she came late, the blood would need to be drawn late. So, she came late, like I asked her not to, and that would mean she would need to get his blood 5pm Friday and by then the labs would be closed. I spoke to JHH and they said they could draw his blood after 2pm and it should be close enough. Hospice said she would be out in the morning. I told her last night that she couldn't do it before 2pm or it would give a false result. I just told the nurse to call me if she showed up too early because I won't let her do it. If she does it too early then he will need to get 2 more shots unneccesarily. I'm not going to let that happen if I can help it. (That reminds me that I need to pull that pretty Barbie band-aid off his leg.) The hospice nurse is nice - but she ain't all there. But she's better than the little bitch that I had before. I'm glad she isn't coming anymore.

OK, moving on...Gracie's cold is a little better - not much. Kevin's seems to be getting better too. Mine too. Hopefully we will all feed good tomorrow. Gracie has her last ballet class and the family is invited to watch. Normally they don't let you watch because it is a distraction for the kids. Kevin will go if the weather is OK. I think he'd like watching all that activity. Hopefully Gan and Pop can make it too. We'll take pictures for you. (Nina has 3 pics of Kevin and Gracie for her son to post on the web for you. Hopefully that will get done soon.)

Hopefully this weekend will be quiet and calm and we can get a few things taken care of at home. I don't want to go out anywhere - but we do have a party to attend at Jeepers on Sunday late afternoon. I sure hope I don't kill any rude little children that day. Chris will stay home with Kevin. I don't know how he won that one....

Have a great weekend everyone! I'll write on Monday and let you know how everything went! (Unless I'm in prison for an unfortunate incident that took place at Jeepers over the weekend.) :)

Thursday, March 3, 2005 6:45 AM

Sorry I haven't written - momma has been sick. Chris is the only one who doesn't have a cold - yet. Kevin is stuffy and his nose gets clogged so he doesn't sleep well. But once you get those boogies out - he settles down. I stayed home the last 2 days and Nina comes to help when the nurse leaves. We just don't know what we'd do without her! Boy - especially when you aren't feeling well and Chris is getting home late. I couldn't take care of both kids.

The nurse said that he had a bad day on my first day I stayed home. She said he threw up a lot. (I was up in my room trying to rest.) But after Nina got there, he only threw up once until late evening. I'm thinking it must be the nurse. If you pick him up when he wants or give him water when he wants and don't let him get too upset - he won't throw up.

He had to receive 2 shots yesterday. Vitamin K. One shot in each thigh. The hospice nurse gave it to him while Nina held him. Afterwards I looked at the needles and I think the gauge was too large for him. I think she used adult size. I'll have to remember that in case he needs to get this again. Hopefully he won't. He needed it because the results from the blood done at JHH on Friday said it was low and he needed the shots. One leg kept bleeding so he has a pretty pink Barbie bandaid on his thigh. He gets his blood drawn again this Friday from his central line at home and we'll see if the shots worked. If the result comes back too low or too high - then he will need to get stuck for the blood. That line has been a lifesaver. It should need to come out soon so he doesn't develop an infection. He's done so well off the antibiotics too. I hope they treated it correctly this time and that infection is gone for good.

I have to get to work now. Sorry I don't have time to write more! Take care everyone!

P.S. - I found this on the web and thought I'd share it...

HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as special.
So let's be careful where he's sent,
We want his life to be content.
Please LORD; find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

Monday, February 28, 2005 7:03 AM

Friday went just fine for us. We were taken back as soon as we got signed in. He was weighed....drum roll please....18 pounds 13 ounces (but that was with clothes and a wet diaper on). So we are saying 18 1/2 pounds. I guess you gain weight when you aren't throwing up constantly! He is also up to 27 inches long. His check up was OK. Dr. Schwarz asked what was going on with cardiology (the teams don't communicate with each other). I told her that heart surgery was next and then another cath. She asked about taking him off hospice care. She said that originally they only thought Kevin was going to live a few weeks - but here we are a year later. I told her that I wanted him to stay on hospice care because of the medications. His meds would cost us over $1300 a month. But since he's on hospice - they cost THEM over $1300 a month. Plus they get delivered right to my door. Since he is a child, we can pursue treatment while on hospice.

After his check up - we had to get blood drawn. He had to get stuck although he still has the central line. The woman taking the blood was a friggin idiot. Dumb as a flat rock as Chris would say. She didn't use the right tubes (after it was pointed out to her what tubes to use) so Kevin didn't get all the tests done that needed to be done. He needs 4 other blood tests done. I will have hospice do those since they are tests that can be taken from his central line.

Gracie and Kevin both have colds. It seems when Gracie gets sick, she has to be in his face all the time. But she leaves him alone when she's fine. He's a little cranky (so is she), and it seems to be disturbing his sleep. His nose gets clogged and it irritates him. Every time I grab a tissue Gracie disappears. This morning she wanted me to help her blow her nose (that was a first). I'm normally not bothered by that stuff - but I'm not feeling well today. So I felt like throwing up when I helped her. I feel like throwing up now just thinking about it.

I want to go take a long nap. I just feel icky. I can't get sick - I don't have time. We got some really good pictures of Kevin developed yesterday. I'll see what I can do about getting them posted on the web so you all can see him smiling! (Plus one with him in a princess crown.)

Thursday, February 24, 2005 6:39 AM

The streak has ended - Kevin threw up. But it's not nearly as bad as before. He threw up once yesterday for the nurse, once for Nina, once for me and once last night for the nurse. Every time I believe he was really pissed off and crying and that's what made him throw up. That boy has his daddy's temper! (Gracie does too.) Kevin threw up for me because I yelled at him. Yes, I yelled at him. After his tubby I dried him off and removed his IV bandage to change it. I pulled the old one off and while I was unwrapping the new one, he started to tug on the line. I said, "Kevin, NO NO NO!" Then he freaked. Then he threw up all over his nice, clean, lavender smelling legs. And my new pants. He still gets crabby and needs Motrin for what's going on inside his mouth. We'll ask the doctor tomorrow if he can use the canker sore medicine that adults use. His cheeks look painful.

Then we layed him down to sleep at 8pm. That was my signal to jump in the shower - alone. I explained to Gracie that the water would be too hot in the shower so she couldn't get in. But when I was finished in the shower, she and I would take a tubby together. So, she stood on the toilet naked for my entire shower and kept asking me, "Mommy, are you almost done? Is it time for tubby yet?" Needless to say, it was a quick shower. Her kids better do these same things to her!

There won't be an update tomorrow morning because we have to leave very early for his appointment. If I get a chance, I will update when I get home and get him settled.

Wednesday, February 23, 2005 6:41 AM

That boy is doing so well! He is a different kid! (I guess once you stop overdosing him he feels better.) He is also doing wonderfully with his throwing up. He hasn't gotten sick since he's been home. We just keep giving him all the water he wants and it seems to help. He is smiling a lot and giggling a little too. He's awake so much longer now also. God's delays are not His denials. We always pray that he gets better and it seems to be happening - slowly but surely. He does have sores in the inside of his cheeks from him chewing on them. We have been giving him Motrin for that. I had doctors look at it at the hospital but nobody said anything. I'll have Dr. Schwarz look at it on Friday when we go to see her.

There is one think I forgot to tell you all about something said in the JHH ER. The GI doc came by to examine him and he felt around his belly. After he felt his liver, he sat down and stared at Kevin. He looked confused. He said that Kevin's liver felt softer that before. It is usually hard because it isn't working properly - but now it's softer. He kept saying it over and over. He was amazed. But I'm thinking that this guy feels livers every day and how can he recall exactly how hard his liver actually was? We'll just see what Dr. Schwarz says when she examines him. By the way, his bili count is down to 27 (from 60). Huge difference. It's still pretty bad - but so much better.

One last thing - I have to tell you a Gracie story....We were in the tubby (playing Barbie's of course) and she said that her heart was in her chest and pointed to it. I said that was right. She said that Kevin's heart was sick and the doctors had to fix it. I said, "Yes. And God too." She proceeded to say that God made Kevin, and Gracie and Mommy and Daddy. And toys. I said, "No honey, God didn't make the toys. He only makes living things." She said, "Oh, He only makes living things. Toys are living ROOM things." I started to laugh. If you all saw our living room you would understand why toys are living room things.

That's it for now - gotta run! Take care and God bless!

Tuesday, February 22, 2005 6:57 AM

Sorry about the delay in writing. These past few days have stunk. We went to the doctors on Thursday for his cardiology check up. Kevin was so sick. Diarrhea and throwing up. Plus you couldn't quench his thirst. He was getting dehydrated. He threw up about every 2-3 minutes while we were at his appt. Plus he developed a fever. His cardiologist said he had a viral infection and to take him home and give him fluids and try to get the fever down. The entire way home, the only way you could keep him from crying was to keep giving him water or pedialyte. I ran out of water about 5 minutes from home and he cried the rest of the way. Chris and I were getting kinda scared. We've never seen Kevin this thirsty. Plus, you don't want to overload him because of his heart condition. We got him home and gave him a tubby and he did fine. He wasn't as pissy as earlier in the day, but he still was extremely thirsty. The evening was tolerable but after the nurse got there, he didn't do so well. I went to bed, but couldn't rest because he was crying so much. I checked on him a few times. Then he threw up his tube a little before midnight. I took it out and called JHH. The GI doctor didn't give me much help. I've dealt with her in the past and she has never really been helpful. She said he could get some blood work done but she hated for us to come that far for that. I told her I would take him to a local hospital and would have them call her if they had any questions. The nurse went with me and we arrived at Shady Grove about 12:30am. He went through triage and then they took us to the back. I told them I didn't want to be seated next to anyone with flu or cold symptoms. They had me stand and wait while the triage nurse went to speak to the doctor. The people at the nurses station and the doctor looked at us like we had 6 heads. The triage nurse came back and told us they were getting him a room. I asked, "Why are they looking at us like that?" He said that they had never seen a baby like him before. And that he was very yellow. (There's a first time for everything.) When we got to the room the asshole doctor came in with a couple of nurses. He didn't even want to touch my son. He had an attitude and told us that I needed to go to JHH. I told him that I had spoken to them and they said he could come here for blood work. Then I gave him the phone number of the idiot at JHH. We were there for almost 4 hours. His blood was taken and his white blood cell count (WBC) was over 20,000 which meant he had an infection. He also needed fluids for dehydration. He also had to get a urine cath. I argued about it with the doctor for several minutes. I let him do it because he said Kevin had symptoms that could be a urinary tract infection. I told him that I was going to stand there and if the person doing it took too long that I was going to stop them. He said he would do it himself. I told him that was fine - but if HE took to long I would stop him also. It went OK. Kevin didn't have much urine to give. That was really surprising because he had been drinking so much fluid. He received an antibiotic through his central line (Thank God we still had that in.) And we needed to get to JHH for the rest of his treatment. Fine with me. I totally understood. But I wasn't going initially because we didn't know if he really needed to go or not. The WBC count told us that we did. Before I left I told the nurse that I wanted to speak with the doctor. He didn't come. We had gotten Kevin ready and I wasn't going to wait around for this guy so we left. On my way out the nurse said, "Doctor, room 2 wants to speak to you - I forgot." So he came over to us while we were standing in the hallway. I said, "It seems to me that you were very frustrated with the fact that I brought my son in here tonight. I don't appreciate it at all." He bucked up and said that he was sorry and that he was actually frustrated. He said he has never seen a child like Kevin before and he didn't know what to do. He apologized again and said we could come back whenever we needed to. I thought to myself, "Try being in our shoes and see how frustrating your life can really get." He escorted me out to the lobby. I thought, if you only want to take kids with broken arms and bloody noses then you need to put a sign on the front door of the hospital. If your kid is too sick - take them someplace else. Jerk.

I got home at 4am to get Chris. He had to get up and ready so I drove around with Kevin in the car for 40 minutes. We arrived at JHH and got inside at 5:45am Friday morning. (Mommy was pretty tired by this point!) He received more IV fluids there and got some x-rays. After the IV fluids were going in, he seemed to feel better. They told us they didn't have any beds on the 6th floor and weren't sure they were even going to admit him. We would take him home if we had to, but we knew Kevin wasn't feeling well and wasn't acting normal. The GI doctors came down to see us. We explained that we would prefer for him to get IV fluids overnight to make sure he was fully hydrated before he went home. They said he could stay. They said that he had been through so much that he could have whatever we wanted for him. Problem was - no beds. We were going to have to stay in the ER the whole time or until something came open. We got him into a room a little before 7pm. Now mommy was REALLY tired. I had been up since 6am on Thursday morning. Kevin was left in the care of one of his favorite nurses and we went home. The next day the doctors called to say that they wanted to keep him because he was pooping out just as much as he was taking in. They had him on Pedialyte all night (but no IV fluids.) So, we went to visit him and he was feeling better - but still not himself. He didn't come home on Sunday because they hadn't switched him over to full strength feeds yet. They didn't want to release him until they knew he would tolerate full feeds. So, Monday morning Gracie stayed at Gan and Pop's for a few hours while me and Judy went to get him. We were home by 12:15pm. He did wonderfully for us yesterday and last night. He has another rash from being at the hospital. We are still working on the previous rash that was so bad. It has gotten so much better - but it's taken a long time to heal. Kevin didn't throw up at the hospital as long as he was on Pedialyte or Pedialyte mixed with formula. But once he was only on formula - he threw up. So it's the food that's been making him sick. When Kevin wants a drink, we give it to him. All he wants. He will take an ounce or more at a time. I figure that the pedialyte or water that he drinks mixes with the formula in his tummy and dilutes it. And he doesn't throw up! He didn't throw up yesterday or last night! I tried to give him an ounce in a bottle yesterday. He kinda figured out what to do - but he couldn't swallow with the nipple in his mouth. He would suck and then have to pull away to swallow. Then he just got irritated with it.

So, he's home and doing fine. He was giggling and smiling last night. I layed him down to rest at dinner time. I looked over at him and he was playing with his NG tube. It didn't look right. The tube was on the other side so he couldn't be playing with it in his left hand. Not unless he had pulled it out! He did. He was whipping it around and getting formula all over the couch. We wrestled him down and got a new tube in. What an ordeal. Sometimes it's easy - and other times it's not.

The next step for Kevin is heart surgery. Dr. Ringel said that the heart surgeon, Dr. Vricella, needs to review the 3D heart scan that was done a little while ago. Then they will schedule Kevin for surgery. Dr. Vricella needs to shorten the conduit that he had placed because it is too long and it curves. Once that is done, Dr. Ringel will go through the new conduit and place a stent in the front portion of his left pulmonary artery. All of this will be done in the OR at the same time. Once Kevin heals from that, he will need another cardiac cath and Dr. Ringel will go through the new conduit and the new stent to place another stent at the far end of his left PA. They aren't sure if they will have Kevin go through an additional heart surgery to correct the hole in his heart or not. That doesn't have to be decided yet. So, heart surgery soon - but we don't know exactly when. I don't like to think about it. I keep picturing him after his last surgery and how hard it was on him (and Chris and I.) I just won't worry about it now. Well, I have to get to work. Take care and we'll keep you posted!

Wednesday, February 16, 2005 2:29 PM

I just got back from being at home putting in a new NG tube for Kevin again. It's a good thing it happened. When I walked in I saw that a syringe of medication was sitting on the table. It didn't look right. He doesn't get any medications of that volume and color at noon (she was a little late giving the meds - that was good too.) Why was it good that she was late giving them and that I was there? Because she was giving Kevin 100 times more than his normal dose of this medication. One hundred frickin times more!!! I said, "What is this?" She said, "His neomycin." I said, "He doesn't get this much! POINT 24 cc's. What are you giving him?" She has been giving 2.4 cc's two times a day for the last 2 months. I called the pharmacy and they told me the highest dose for a baby his size would be 700 mg per day. His normal dose is 480 mg per day. She was giving him 2400 mg within her 2 doses and I gave the other 2 doses which was 240 mg. So he has been getting almost 3000 mg per day! I told her that she needed to contact her company and inform them that this happened. It could cause kidney failure/damage, hearing loss and excessive vomiting. She had me sign her timesheet before I left to come back to work because she wasn't sure if she'd be back. I called Nina to ask her if she would come home a little early because the nurse also sounded like she was losing her patience with Kevin because he was crying. He probably doesn't feel good because of you, you idiot! Don't lose patience with him! Nina could get ther 15 minutes early which meant that the nurse should only have him for another 15 minutes after I left. I HATED to leave him. She said he had been crying all day - but when I got there I took him into the kitchen and ate my lunch with him on my lap. He did fine. God - my head is starting to POUND. I'm not on my lunch break anymore so I have to run!

Wednesday, February 16, 2005 6:53 AM

Well, I received a call yesterday at 11am from the nurse. His tube came out. Out of his mouth! He actually threw it up. That's only happened one time before. So, I took my lunch break and went home to change his tube. It only took a minute to change - but 10 minutes to get everything ready. Then I grabbed something to eat and came back to work. Being close is a huge advantage in this aspect. If I was in Bethesda, it would have taken me over 30 minutes to get home and he wouldn't get to eat or get any meds he needs until I was able to get home.

Gracie and I went to the park when I got home yesterday while Nina stayed with Kevin at home. He wasn't feeling up to the park that day. I learned not to touch Gracie after she comes down the slide. She shocks the hell out of me. The next time she went down, she shouted from the top, "Mommy, don't touch me! It hurts! Don't touch me Mommy!" OK, OK, I won't! Then I had to deal with the trauma of getting her to go home....

Kevin slept for over an hour while we had dinner. We woke him up so he could get a bath. That went fine. Not like last time when we tried something new. I'm not sure if I told you all about that horrid experience....we have a baby tubby that the baby can sit in and it has a type of T-bar across it so the baby can hold himself up. We got it out of storage and put Kevin in it before I filled it to make sure it would work for him. He did fine. OK, so I put it in the bathtub upstairs and filled it with soap and water. I filled the rest of the tub with soap and water so Gracie could bath at the same time. Huge mistake. We got both kids in. Kevin's tubes went into the water and he started to cry. That was because he had slid forward and his little boy parts were being squished by that T-bar. Chris and I were both squeezed at one end of the tub trying to take care of Kevin while Gracie whipped a wet washcloth at us. It really sucked. At least we tried it and we now know not to try it EVER again.

So, it was back into the kitchen sink for him last night. He did fine and did fine for us the rest of the evening. Then he started to throw up about 9pm after the nurse arrived. He hasn't really stopped. I had no more Pedialyte for him (Nina is going to grab some of that for him this morning.) Plus the nurse came to wake me at midnight - he threw up his tube again! AAAGGGGHHHH! So I went down and changed his tube and held him for a few minutes. He was calm - but he kept shoving his fingers down his throat and gagged himself. I gave him to the nurse and went to bed. (Or should I say TRIED to go back to bed.) He cried and cried and cried and cried! I went back down at 1am and held him. I told her to take a little break. She said it was OK, but I know how hard it is to take care of him when he is constantly crying. You need a break. Then I layed him down and he went to sleep. He stayed asleep for 10 whole minutes. Then he cried and cried and cried. And threw up. Not a good night of sleep for Mommy or Kevin. The day nurse wants me to call someone about his throwing up. Not yet. It's way too early. I'm not worried because I've seen him like this before. They would just tell me to give him Pedialyte. I'll give him another day and see how he does. I'll just ask God to make this pass too.

Time for work! Take care everyone!

Tuesday, February 15, 2005 6:27 AM

He's feeling better. Yesterday afternoon the nurse started to give him Pedialyte in with his formula. My mom had stopped by because she knew I was worried and she called to tell me that he wasn't feeling well - but it wasn't the same as all those other times he's been sick. She was right. He's so much better. I had the nurse take his temp every hour and it went up just a smidge but it was probably because he was being held. It was back to normal by 3pm. Nina took over at 3pm and when I got home he was sitting up and doing just fine. He layed down for over an hour and woke up just in time for Chris and I to eat dinner (of course). He sat up and he watched 3 Baby Einstein videos and watched Gracie dance around the room to the classical music that's played on them. I can't tell you people how sick I am of these videos - but they make the kids happy. So we watch them...every night...over and over and over....It just dawned on my how Chris tends to disappear when they are on. No fair!

Well, thank the Lord that He heard us and made Kevin feel better yesterday. I pray that he stays well. Thank you all too!

Monday, February 14, 2005 12:22 PM

Friday afternoon Kevin was cranky. I was watching something on the Discovery Health channel on JHH. It was about a little girl that Dr. Lau had transplanted part of her father's liver in to her and it didn't work. There was a blood clot and it couldn't be fixed. She needed a new liver within 24 hours or she would probably die. They tested the girls uncle and he was a match and she had her 2nd transplant within 2 days. That one worked and she is now 4 years old. (She was 1 at the time of the transplant.) Then the story went to the 6th floor where Kevin usually stays and they were talking to nurses there. One was Pam. She kinda sings like Snow White. She sings to calm the kids down. She started to sing to a patient on the TV and Kevin stopped fussing and looked at the TV. He watched her and when she was finished - he got cranky again! He recognized her! I was amazed.

This weekend was pretty hectic. Gracie didn't want to go to her ballet class and there was nothing I could do to talk her into it. We had nursing help during the day on Saturday - but no help at night. I stayed on the couch with Kevin that night. He did pretty well. The next morning the nurse was supposed to be there at 8am. She told me on Saturday that it would be closer to 9am. Fine. She didn't show up until 11am! And she never gave him his medications on time. His antibiotic is due at 10am and she knows that...she asked me at 10:30am, "Karen, are you going to give him his antibiotics?" No, that's why you are here. I had to keep reminding her that he had meds due and most of the time just took care of it myself. She is usually just the night nurse for Saturday and Sunday. Kevin is finished with his antibiotic treatment as of Saturday so we don't have to worry about her for daytime shifts anymore. We no longer get daytime weekend nursing.

This morning Kevin had to go get a shot. It was a big shot so he got 2 shots instead of 1. One in each thigh. He was PISSED! Before he got his shot we had to wait in the room for 30 minutes. He was acting really fussy. It was making me think that he was going back to the way he gets when that fever kicks in. He just stopped the antibiotics - he better not get sick again! I don't know what they will do this time if antibiotics don't work. Hopefully I'm just being a worry wart and he's going to be fine. I will call him shortly to check on him. I told the nurse to keep him on Motrin today every 6 hours because of the shots. If he gets a fever above 102 we will need to take him to the hospital. And he will be grounded - again. I've prayed several times already today that he doesn't get sick. You pray too!!

I have to run - my lunch break is over. Take care!

Friday, February 11, 2005 6:54 AM

Not much to report today. Kevin did just fine yesterday. His rash is still looking pretty gross - but it's slowly getting better. It should - the medication for his hiney costs $249.53 for each container. (Don't worry - I don't pay for it.) I had his diaper off for his dinnertime nap so it could get some air to it. That always seems to be the best remedy - and it's free!

His throwing up wasn't too bad yesterday either. Since he is off the Reglan he doesn't wretch as much as before. There is a huge difference. But, when he throws up now - he really throws up. Last night he threw up while over Chris' shoulder and he got his back, all the way down his leg, and to the floor. And of course his feeding tube had to come out at the same time. It was barely in there so I just pulled it out the rest of the way. We gave him a 30 minute break without any tube up his little nose. He's so handsome with nothing on his face. When the 30 minutes was up I got all of the supplies together and we layed him on the couch to put in the new tube. Usually Kevin will fight you pretty hard. Chris had to hold his hands down and Kevin only cried for 5 seconds. The tube went in on my first try and Kevin was cool with it. I think he was tired. Gracie was well behaved during this time too. That helps. The nurse said he had a good night last night too.

The evenings are starting to get easier for me. At first when Kevin came home he didn't feel well and it was SO hard. You had to give Gracie the attention she needed and Kevin too. Plus cook dinner and do the dishes. Get the laundry done and try to pet on the the birds while you rush past them. Plus they need food and water and clean cages. (It's like having 5 kids - Chris is included in that count.) Seriously - Chris is a big help. Mom said that I need a Mommy's helper. I guess it would help - but people are busy too. They have to do the same stuff I have to when they get home from work.

I have to go to work. I'm tired this morning. I had a dream that Johnny Cash was hitting on me and it woke me up. Ick.

Thursday, February 10, 2005 6:28 AM

Kevin is still doing just fine. Smiles and all. But, things didn't go so well for Mommy when it came to getting the x-rays done yesterday. I had to take off early - which isn't really an easy thing for me to do - and my dad went with me so he could drive and I could sit in the back with Kevin. I had called earlier in the day to make an appt and they told me that they didn't do the scans on children under the age of 3. The other thing listed on the doctors request was listed under 'routing x-ray' and it was a babygram. They told me I didn't need an appt for that and I could go to any radiology office for that. Great - there is one near the house. So, we went. We waited almost an hour before we were called back to the x-ray room. There, they kept me waiting for another 15 minutes. They said they needed clarification from the doctor as to what was needed. I told them what my concerns were and where I thought the x-rays should be done. Then they called me back in to the radiologists office. She said that they couldn't help me and I needed to go to another office. They called the other office and said that they should expect us and take us right away. i heard her say that the radiologist wasn't there, but she could review his x-rays in the morning. Then she gave a little pity face for us and said, "God bless." Fine and dandy. We left there and went to the other office (in rush hour traffic.) We got there and only had to wait about 10 minutes. They called us back and had me wait another several minutes. Then they got us into the x-ray room and had me take Kevin's clothes off. Not an easy task. So, I'm standing there, holding my naked baby, praying that he doesn't pee on me. (He didn't.) Then they come to me and tell me that they couldn't do it. I had to make an appointment and come back another day. "WHY?!" Because the radiologist wasn't there. I said, "I know, I was told that she would check the x-rays in the morning." They said that they spoke to her and that's not what she had said and they couldn't help me. I started to cry. I was so friggin frustrated. I had to get Kevin re-dressed and he threw up all over himself. In his ear, his hair and on his clothes. And on the x-ray table. I looked around and everyone had left. I was back in the x-ray area alone. There was nobody left in the entire place. I guess I scared them off with my reaction. Nobody wanted to stand around and watch me cry. So, I got Kevin as cleaned up as I could and went back to the waiting area to retrieve my father. Of course, he was like ,"What's the matter?!" I said, "They won't do it. They won't help me." So, we vented a little bit to the receptionists (who didn't give a shit) and we left. I cried almost the entire way home. I don't know why. I should be used to this crap by now. I think I'm just reaching my limit and it's starting to really affect me. I normally don't react like that. On the way home I called the radiologist that sent us there in the first place. She said that things happen and there was a lack of communication and they tried their best to accomodate me BLAH BLAH BLAH. Then she said that she understands because she has a baby too. She has NO idea and she doesn't understand. What disease is her baby dying from? How dare her compare herself to me. That bent me out of shape even more. Then I hung up on her. Ya know - these people don't care. They don't care if they have to send me home and make me reschedule. I just wish they could spend a day in my shoes.

I haven't rescheduled Kevin's x-ray and I don't think I will. He will get an x-ray at JHH on 2/17 anyways. Kevin had a good day yesterday and last night. He's feeling pretty good. He behaved wonderfully while we were out attempting to get his x-rays done. When we were on the way home and I was crying I looked over at him and he was staring at me like, "what the heck is wrong with you now?" I guess I can't complain because he's going through worse things than I am. I'm just so tired of everything being so hard. It doesn't have to be as hard as people make it for us. We never seem to get ahead. There's always some type of road block. OK, I need to stop having a pity party for myself. I think I will just start to take a gun with me to his appointments. They'll be quick to take his x-ray when his unstable Momma has a gun shoved to the side of their heads!

One of these days something will go right and smoothly. One day....

Wednesday, February 9, 2005 6:52 AM

I got the approval from Kevin's pediatrician for a body scan to check all of his bones. We will get that done today. When I got home yesterday evening he was a little cranky but wasn't too bad. The nurse had told me during the day that he wasn't feeling well. Just very lathargic. He got more irritable as the evening went on - but not for long. I don't know what made the difference - but by 6:30pm, Kevin was acting like his old self. Smiling and giggling a little bit. He didn't throw up all evening (although he did throw up 8 times last night for the nurse.) He even had some dinner. Normally, as soon as you dab just a tiny bit of baby food on his tongue it would make him throw up. He had peaches last night and did just fine. He doesn't eat alot and he still doesn't take a spoon like a normal baby - but he did the best he ever has with food. He would stick out his tongue and I would wipe the spoon across and he would take in whatever I got on his tongue. Eventually he stopped putting out his tongue. So I would look at him, stick out my tongue and say "eeehhhh" - then he would do it. He's no dummy. I gave him a papertowel and he would play with it (which kept his mouth kind of clean.) Then he got to the point where he didn't want anymore. I would give him some peaches and he would twitch like he was eating a lemon or something. I figured they were getting kinda tangy. Then he got a tubby in the kitchen sink and we changed his IV bandage. He didn't fuss at all - he was so good. He was VERY unhappy when I got him out of the tubby because I touched his horribly sore bottom with the towel and he cried pretty hard.

We stopped his new medication yesterday so I don't know if that made a difference. The purpose of it was to empty his gut faster - so it gave him diarrhea. Maybe it was giving him cramps too and that's why he was cranky. I dunno. He seems to have his good moments and then feel bad again. Maybe it's just all part of this freakin disease. I want him to be all fixed and get to normal!

So, since he had some time last night when he was feeling fine, maybe his bones are fine. But ya know what? I'm going to get the scan done anyways. It can't hurt. I'll get that done this afternoon.

Well, I have to run. Hopefully his day today will go as well as last night.

Tuesday, February 8, 2005 6:46 AM

Kevin just isn't himself these last few days. He seems OK overall, but he's more fussy. We are extra careful when handling him. It seems that sometimes when you pick him up or when you are changing his diaper he cries like he is in pain. It's not a "leave me alone, you're pissing me off right now" cry - it's a painful cry. He also has diarrhea from the new medication he's on. We are stopping that today. Now we are worried that he's getting dehydrated. He will get Pedialyte today with his formula.

So I called the hospital this morning and talked to Pat. She agreed to stop the medication for now that's making him poop so much. Maybe it can be re-started at a lower dose. She will talk to the doctors about it today. I also asked about him possibly getting an x-ray locally. Since he is acting like he is in pain it seems to be the most obvious place to start. So once she talks to the docs there, I will call his pediatrician and see if she will give me the orders I need to get an x-ray for him. I really hope that isn't an issue with her. I just don't need that hassle. (I don't know why, but I feel like crying right now...think happy thoughts Karen...)

Yesterday was Pop's birthday. I told him that he was getting Gracie as a gift (but just for 1 month.) He didn't take her. I tried. She seems to be getting a smidge better though. Just a SMIDGE.

Gan went to the dentist yesterday. I asked her to talk to him about Kevin's teeth. They are discolored and just all around don't look like they should. She said he wasn't surprised at all to hear that his teeth are like that. It's because of all the medications he is on. Hopefully, if he gets his liver transplanted soon enough, then his big boy teeth might be OK when they come in. If not, they may have to all be crowned as an adult. His teeth probably aren't producing enamel either. Ya know - you don't think about all the other issues that are caused by this disease. His liver and heart aren't working properly - but that affects so much more. He stops his antibiotics next week - so then we have to take him to get his hearing tested because of the side effects. It gets mind boggling when you think about all of it. I have to run to work! I'll let you know what the plan is for him after I hear back from the docs!

Monday, February 7, 2005 7:06 AM

Kevin is still doing just fine. He's a little cranky and fussy at times because of his high bili count. But overall I think he's happy to be home. We are having a tough time with Gracie at the moment. She said he is happy he is home - but she is a little terror. I'm doing what I can to make this easy on her - but she can be so difficult. I took her to McDonald's last night to have some play time and away from the house time. She was good. I tried to give her to a nice couple but they wouldn't take her.

I'm also paranoid about Kevin's bones ever since they told us about the brittle bone issue. Every time I pick him up or move him from one position to another and he whimpers or whines, I quietly freak out. I keep it inside my head. I keep wondering if he is hurt. When he is over my shoulder I would press his sides, his legs and his arms. I wanted to see if he was hurt anywhere. He goes back to the cardiologist in 2 weeks and will get an x-ray at that time to check his lung. Maybe then can take more x-rays to check the rest of his bones at that time. It's such an issue with the insurance company though. If I get too worried, I will just tell his pediatrician to give me a slip to get his x-rays done now. I'm a nervous wreck with that.

Well - time for work! Bye!

Friday, February 4, 2005 7:09 PM

Kevin is home! He's doing just fine. But man is he YELLOW. He's almost orange because his bili count is so high. And what a rash he has on his bottom! I've never seen a rash that bad. It's right under his little doo-dads and it looks like when you fall down and scrape your knees. It's beyond raw. We'll work on it though. They put him on 3 additional medications. One is 6 cc's twice a day. That's a huge amount for him to take. Problem is...the pharmacy doesn't carry the concentration for that so he will need to take 12 cc's twice a day until they get the other concentration delivered to us on Tuesday. I don't know if he can hold all that down. Of course we won't give it to him all at once - maybe span it out over 30 minutes (or more.) He goes back to the cardiologist in 2 weeks and to GI in 3 weeks. They also took our blood today (all 3 of us), to send to CHOP for some more Alagilles testing. We are happy to have him home. Uh oh - sounds like all hell is breaking loose upstairs. (Gracie didn't have a nap today.) I hafta run! Thanks for checking in!

Thursday, February 3, 2005 6:26 AM

Kevin will be coming home tomorrow. Right now they are working on getting things tweaked. His bili count last we knew was 49. That's just absolutely horrible....yesterday it was 60. Chris asked if maybe his liver was starting to fail more and they told him it was still functioning OK. They said that the high bili count is probably because of his recent trauma. (But it's gone up since Saturday.)

They also gave Chris some information about brittle bones associated with biliary atresia. They noticed back in August that his bones, especially his rib bones, were getting thin, so they put him on extra calcium. Now they tell Chris that maybe it was a fracture in his rib. They aren't sure. But they think from his last x-ray that it is showing that it was cracked or fractured and is now healed. I don't even want to think about that. I would feel horrible knowing that we didn't handle him any differently and maybe could have been hurting him....

They have increased Kevin's feedings up to 48 because he isn't growing anymore and his blood is getting thicker. That means that he is getting dehydrated and needs more fluid. He seems to be tolerating it well.

Chris also said that Dr. Ringel and Dr. Vricella want to do something with Kevin in the coming weeks. We don't know what - they didn't go into it. We'll hear more about it tomorrow when we go to pick him up.

Kevin is doing well and is happy. He's smiling and charming his nurses. We are anxious to get him home.

By the way, I had to go over how many days Kevin was in the hospital last year and the mileage...ready for this?
Kevin was in the hospital 221 days last year. It cost us $942 in parking fees and we traveled 18,340 miles to go back and forth each day. That's alot of driving!

I have a Gracie story for ya too. Last night she and I went to dinner with Gan and Pop. She started to get fussy so I decided to put some money into the Lottery scratch-off machine and let her press some buttons. I put in $20 because that's all I had. I figured she would hit a few $1 buttons and I'd get change. There was 1 $10 button high up on the machine. Which button did she go for? Of course - the $10 button. She stood on her tippy toes and whacked it TWO times really fast. My $20 was gone in 1 second. I went back to our seat and scratched off the first ticket...$50! The second ticket only won $10. But I didn't lose any money and earned an extra $40. Pop wanted to know if I was going to put some in her piggy bank. Nah - I paid for her dinner (and all of the other meals she's had the last 3 years). Mommy kept that money!

Take care you all and I will update when I get a chance after Kevin comes home tomorrow.

Wednesday, February 2, 2005 9:13 AM

We don't know if he's coming home today or not. They haven't made up their minds yet. He had to get a cardiac CT yesterday afternoon and it didn't go well. They called me to tell me that Kevin needed an IV because they didn't want to use his central line for the dye. I told them 3 tries was all they got. And I wanted him to have morphine before they tried. They tried 3 times and couldn't get anything. He went for his CT and Chris got there in time to be with him. Chris said that the nurse pushed the dye into his line too fast. Then he heard a POP. His central line burst. Chris was furious. After Kevin got back to his room and settled - a surgeon came to patch his line. I was told it went well and it's working fine. But the line can't be used until 7pm tonight. So they had issues with his IV antibiotics. He just hasn't gotten any since yesterday afternoon. I hope that doesn't screw up anything for when he's finished his antibiotic run on 2/12. We don't want that damn fever to come back.

So, I've called a couple of times this morning and the nurse hadn't heard anything yet. They will give me a call later. I need them to give me notice because I have to cancel the nurse for tonight if he doesn't come home. (Actually, the nursing company never called me back to let me know if the nurses are available or not.) Crappy communication on their part. I have to go (I'm at work and shouldn't be doing this update on my work hours!) We'll let you know when we hear something!

Tuesday, February 1, 2005 6:38 AM

Kevin's doing OK. I was told that he may come home tomorrow. Chris and I will be happy to have him home - but we want Kevin to be well enough to come home that we don't need to constantly worry about him. He still needs oxygen sometimes - but not constantly as of last night. Pat Kane returned my call yesterday because I hadn't heard from any doctors. She said that Dr. Doom said that Kevin could go home that day....she said he couldn't. Especially since he had a fever the night before. She understands there is alot to get into place for him. I've gotten his meds from hospice and started the nursing company calling to see if the nurses are available.

I just called to check on him and Anna Ruth has him today. Thank God. I wasn't too fond of the nurse that had him yesterday. Chris said that Kevin smiled and laughed for him yesterday when he went to see him after work. I haven't seen him since Saturday and it's just killing me. Anna Ruth said she hadn't heard anyone mention anything about him coming home tomorrow. He is having problems with low Potassium and Calcium levels. His antibiotic levels are also too high and they are working on getting that straightened out. He's also pooping alot more than usual and it's a little runny. He's been throwing up more too. They took an x-ray yesterday and saw that he might be getting pneumonia in his left lung. They took another x-ray this morning to see how that looks. We don't have the results yet. That poor kid just can't catch a break.

I'm going to call later this afternoon to see how he's doing. I told Anna Ruth that they were talking about him coming home tomorrow. She said she hadn't heard one word about him being released. She said that if his potassium levels aren't stable then he probably wouldn't come home yet. Cardiology should do their rounds soon and I'll get some more info then. I'll keep you all posted!

Sunday, January 30, 2005 10:54 AM

Kevin was taken off the breathing machine at 5pm Friday. His sats were doing OK and he didn't need any oxygen. They planned on him going to the 6th floor on Saturday morning. Before they moved him, we noticed that Kevin's nostrils were flaring and he was breathing hard over 70 breathes per minute. But he was comfortable. The doctors took an x-ray and said things still look the same and he should be OK. He was moved Saturday afternoon. His sats started to go down to about 80 (he should now stay above 90) so he needed some oxygen. He is still getting it. Chris went to the hospital today and Gracie went to Judy's for a few hours. I took a shower all by myself!

Chris just called from the hospital. Kevin is doing OK. The doctors said they don't hear any air moving in Kevin's upper or middle right lung. We want him to come home - but I don't see how we can do it right now with him in the state he's in. I don't even think we can get nursing qualified to handle him the way he is. But the hospital tends to push them out. We'll see what happens.

Dr. Scwarz spoke to Chris briefly yesterday. She said that CHOP did find something in Kevin's blood that was sent to them a couple of months ago. She didn't go in to specifics - but she said they needed more blood from Kevin and also wanted Chris and I to come to see them at CHOP. I don't know how Chris and I would be able to do that. Philadelphia is 3 hours away. If they need blood from us - we should be able to have it sent. If they want to speak with us - we can use the phone. We'll speak to Dr. Schwarz some more to get clarification. I don't even have time to shave my legs - when will I have time to go to Pennsylvania?

One last note - I received a letter yesterday from Denise who has been watching Kevin's progress via the web. We don't know Denise and she doesn't know us - but she sent us a wonderful letter with a tiny rosary for Kevin with his name on it. It was very sweet and we thank her for taking the time to do that for us.

Friday, January 28, 2005 3:05 PM

Kevin has been taken off all of his pain and sedation medications as of noon today. He should start to wake up and breathe over the respirator. Once he does, they will start to wean him off and the breathing tube should be taken out in the next several hours. His Daddy is with him now and will hopefully be there when our little guy wakes up.

Friday, January 28, 2005 8:37 AM

Kevin is hanging in there. He is still on the breathing machine but may come off sometime this afternoon. When I arrived yesterday they were switching him from a regular bed into a crib. It's harder to reach him because of the machines on both sides. He also wasn't breathing over the machine. The machine is set for so many breathes a minute and Kevin was taking more breathes than the machine was set for. But yesterday he wasn't. As of last night he still wasn't. But that's probably because he's on so many pain meds that it has suppressed his breathing. I am at work today. Chris will be going to see him this afternoon. We don't know how long he will be in intensive care or even in the hospital. I know he will be OK, but now I'm worrying about the nursing situation. I don't know if our day and night nurses will get new cases since Kevin is in the hospital. Then I won't have any coverage. I guess I'll just worry about that when the time comes. I have to get to work now. I'll update this weekend!

Wednesday, January 26, 2005 7:46 PM

Kevin is about the same. They told us earlier today that his lung looked much better - but when we called tonight - they said it was worse. They had taken another x-ray after we left and his lung doesn't look too good. He is still on the ventilator and they are still having a VERY hard time sedating him. He had his 4th blood transfusion today and they were starting on a 5th when we spoke to them tonight. Since he is still bleeding in his lung, his hemoglobin count is too low and he needs the extra blood. They don't really have a plan right now. But Chris and I honestly think he will be OK. He woke up today and I was glad that I was right there and he was able to see me. That meant alot to me.

I am going to try to work 1/2 days for the rest of the week. I'm not so sure about tomorrow since he isn't doing well - but we'll see. Chris will be going to the hospital after he gets off work. I'll go to the hospital in the morning and see about leaving at noon. That would get me to work a little after 1pm.

Kevin is critical right now. It's nice that he has a nurse and he is her only patient. Usually it's 2 patients to one nurse. But he's a full time case right now. He has 11 things plugged into his IVs. Blood, pain meds, antibiotics and all kinds of other crap. We just wish he was more comfortable and wouldn't wiggle around so much. He's a tough kid. I have to go. I'm so tired and Gracie needs a tubby. Take care and thank you for your prayers.

By the way, Kevin is grounded AND he's down to 13 cars (from 17).

Tuesday, January 25, 2005 8:45 PM

I'm sorry to say that Kevin did not have a good day today. The cath had many problems and was cut short. Kevin went in at 9:20am and the anesthesiologist was nice enough to let me hold Kevin while she gave him the medicine for him to fall asleep. Then I layed him on the table, Chris and I gave him kisses and we left. They called an hour later to tell us that the lines were in and they were going to measure pressures in Kevin's heart. They said they would call again in an hour. They didn't call. The cath lab nurse, Glenda, came out and called me into the lobby area. She said that they had problems and had to stop. She said that Kevin was stable. The cath guide wire had punctured Kevin's pulmonary artery and blood rushed into his right lung filling it over one third. Kevin's blood pressure and heart rate dropped immediately. She said he was OK now and it was no big deal. She was wrong. The doctor came out to talk to us and said that this is a huge setback for Kevin and he doesn't know how long it would take to recoup or if he would get through it. Kevin is on a ventilator which pumps oxygen into his lungs. Since the left lung has small pulmonary arteries, the right lung was Kevin's strong lung. Now it isn't functioning properly because of all the blood in the lung tissue. Another problem was that Kevin started to spit up blood through his ventilator tube while in the cath lab. It was everywhere. They took him to the OR immediately because the ventilator tube stopped working and they couldn't get any oxygen to Kevin. They removed the tube which ended up having a huge blood clot at the end of it that was blocking the airflow. They put in a new tube and sent him to the PICU. Kevin should be there for a few days. Then, when he gets weaned off the ventilator, he can go back to the 6th floor. We were told that he will be in the hospital up to a couple of weeks. Totally not what we were expecting to hear. He freaked alot of people out today - and still is. He almost died today. We asked God to get him through this cath. It didn't work out like I thought it would. But God has kept Kevin alive. Chris and I are so confused.

They are trying to keep Kevin sedated - but it really isn't working. They have pumped so many pain killers and sedation drugs into him - but 30 minutes later he's wiggling around and causing havoc. We had to hold him down several times this evening while they gave him more drugs. His arms and legs are tied down, but he ripped one free. He is strong. The ventilator is really giving him a fit. Plus they left the lines in his thighs. One in a vein and one in the artery. One started to leak pretty bad. Blood got all over his thigh and down underneath him. We got him changed and comfortable before we left. He isn't peeing either. They are giving him Lasix to see if they can get him working.

I have to go....Chris is calling. The bird had an accident. Just what we need.

Monday, January 24, 2005 6:51 AM

I don't have much time this morning...Kevin is doing just fine. He had a pretty good weekend. He even smiled several times for us. He especially likes it when you act like you are smelling his feet and tell him they're stinky. That always makes him smile. We had some nursing help this weekend which I was scared we wouldn't have because of the snow. I was able to get sleep each night. I still wake up at 4am - but it's better than nothing.

Kevin spends alot of time in that bouncy chair. But he eventually gets cranky and you have to bounce him or swing him. The minute you stop, he lets you know he's not happy. Getting a bit spoiled. Gracie does a good job of bouncing him.

Chris was with him yesterday afternoon while Gracie and I were playing Barbie's and Kevin spit up some blood. I didn't worry. Not unless it were to happen again. It hasn't. His vomiting seems to be getting alot better too. It's slowed down alot. He still has his moments - but it's so much better. He is still having those spasms too. But less often.

Linda put some of his pictures on the website! Thanks Linda. They aren't on this site - you have to go to the additional links that is listed towards the bottom of the page. It takes a little while for them to download. The first page is the only one with new pics. (She kept the one with Gracie and Kevin in his crib on there because it was cute. So that's not new.)

Time for work - ick....

I'll update tomorrow night if I can or Wednesday morning to let you know how his cath went. Pray for that little boy and that we get good news! Take care!

Friday, January 21, 2005 6:39 AM

Kevin's throwing up is getting better each day. He seems to be gagging a whole lot, but he's not throwing up each time. The hospital told me that they could see him in clinic and get some blood taken to check his levels. I can get his blood done closer to home. And taking him for them to see him wasn't going to help his throwing up any. So I asked if his blood could be taken from his central line. If it could, then hospice could take care of it from home. If he needed to get stuck, then I would take him to LabCorp (which I don't like.) The hospital said that it could be from his line. I contacted hospice and they said they would be out to the house shortly. Finally, at 4pm, hospice called and said she was on her way. I asked her where she was coming from because the lab closed at 5pm. She said, "He doesn't need any blood taken today." I guess she didn't get told from her supervisor. So, to make a long story even longer...I filled her in and she said she would be by today in the morning. The hospital wanted the blood taken because they want to check his electrolyte level before the cath is done. It may have to wait if his levels aren't OK. But since he's not throwing up as much I don't see any problems.

The nurse asked to leave early on Wednesday because of the snow. Nina came over at noon and watched both kids for me so I didn't have to leave work. I don't have any leave and I would have to take leave without pay. I am no longer on the leave donation program since I am full time. I didn't have a good day on Wednesday. I'm not happy with work right now. I don't know if I ever will be. Chris and I talked a little bit about me taking a lower-level position back on main campus so the stress level is decreased. It would be for a different Institute. But I'm not sure I can find a place where they would understand my need for taking leave for Kevin. I will be off on Tuesday for his cath, but I need to be back on Wednesday. Chris is going to have to take off and he and my dad will go get Kevin from the hospital. (By the way, then I say "hospital" around Gracie she corrects me and says, "No mommy, it's HOSTIBLE.") I don't know - I've got so much on my mind at home, I just don't know if I can handle the stress of work too. I've been on my medication for 2 weeks now and it hasn't started to work yet. I'm up in the middle of the night thinking about everything and then I'm so tired during the day. It's just not healthy.
No wonder my hair is so damn gray.

Gracie and I got to spend some time together yesterday (even though the nurse didn't come.) Nina came over to watch Kevin so I could take Gracie to the mall. I had been promising her I would take her. We ran in to my friend's sister and her daughter. She said that they were meeting my friend at the mall. So Gracie and I joined them for lunch. Her daughter kept Gracie entertained. Then Gracie got a splinter in her finger and pitched a fit. So we left. But before we left, she wanted a pretzel. But the pretzels had to cook for another 5 minutes. She wanted to wait. Then she screamed about her finger again and wanted to leave. We left and when we got outside she started to whine about the pretzel. We went back in. By the time we got back, the pretzels were done, but there were 8 people in line ahead of us. We got the last one! And guess what...she didn't eat her pretzel. She didn't want it and her dad ended up eating it. She thought she would be able to go back to the mall after she went home and got her finger fixed. She cried about it when I told her we couldn't. Then she finally forgot about it. By the time the nurse arrived last night - I was exhausted. I had been up since 4am. Poor Chris was really tired too. I think I was asleep by 9:30pm.

I have to run. Take care everyone!

Wednesday, January 19, 2005 6:40 AM

That poor child threw up over 15 times last night! He didn't get any sleep. The hospital finally called me back last night. Dr. Schwarz is in Denver so they were going to send her an e-mail and see if she responds. I told them about him being on Reglan too long and she said that they leave people on medications as long as it works. When they start to have problems is when they take them off. Oh great. So just leave our kid on it until he had brain damage and then take him off when it's too late. Ya know, they hadn't told Chris and I about the side effects so we didn't know what to look for. If we knew, we would have taken Kevin off 2 weeks ago when he started having problems.

He slept a lot yesterday because the night before didn't go so well. But he was fine for Nina after 3pm and he was fine for Chris and I in the evening. I think he only threw up twice for me. But last night was horrible for him. I'm hoping that he will do better today. But I'm not sure that will happen. If the Reglan isn't being used - he will probably just keep throwing up. I just don't know. Chris and I are going to speak to them about checking Kevin's neurological functions when we go in on Tuesday for his cath. Someone should be able to help us. We aren't going to just let it go. I have noticed that he is still having spasms in his face and head, but they aren't as severe as before. They are milder. Hopefully they will go away and we caught this in time. Poor little guy. He'll get through it. He always seems to.

Now I'm going to go look up that Reglan lawsuit website my cousin sent me! Bye!

Monday, January 17, 2005 6:39 PM

Our weekend was a bit hectic. The nursing company is really getting on our nerves because they don't have us covered fully yet. They don't even have anyone for next week! I have to work! I try not to worry about it too much. That damn medicine the doctor put me on hasn't kicked in yet...

Kevin has been throwing up a little more than usual these past few days. Sometimes there if formula in it - but most of the time its slobbery, stringy stuff. He throws up just about every hour. I talked to Chris about doubling his Reglan which the doctor said we could do when we spoke to her about it at his last GI visit, and it should help, but it would make him fussy. We had decided not to do it at that time. Chris didn't want to do it now until I looked the info on Reglan up on the web. Good thing I did. We found out that Reglan is approved by the FDA for short term use. Up to 12 weeks. Kevin has been on it for over 14 months. It causes neurological problems, insomnia, irritability, muscle spasms and may other things. Kevin has several of these side effects. The most recent being the spasms in his head and face. We weren't sure what it was when it started happening. I thought maybe it was irritation from his tube or something. Nope - side effect from Reglan. The poor kid won't sleep more than 2 hours straight either. We will have to get him tested for more neurological damage that it may have caused. Hopefully we caught it in time. Chris and I have discussed it and stopped the medication as of today. If he throws up more - then he throws up more. I called the hospital today to speak to his GI doctor and I didn't get a response yet. Hopefully they can think of a replacement medication to help him. But we won't put him back on it. We are irritated that they didn't tell us about these side effects and they should have known not to keep him on the medication for this long. We'll see what they say. Hopefully he can bounce back from the damage that it's done so far. We've read that many times it's not reversible. He's got enough problems to deal with.

But he's still happy (when he's not throwing up.) As far as we know, he is still on for next Tuesday, the 25th for his cath. I have to go - Gracie is in my face and keeps messing with the computer. She wants to play a game...so we will.

Friday, January 14, 2005 12:05 PM

Kevin hasn't been having good nights the last two nights. I think it's his teething. He doesn't want to take his B and wants to chew on his fingers. He's really fussy at night. They say teething is worse at night. We keep him on Motrin practically around the clock.

The nurse said that Kevin had a bad day yesterday. Fussy, throwing up more than usual and sweating alot. He was fine for me all evening. He even laughed at Nina. He threw up once between 3 and 9 and it was minimal. But he was fussy once the night nurse got there. She held him most of the night. He was fine this morning too. I had asked her about the IV line being pulled. She said she had checked it before she left and I must have done it. I thought that was kinda rude. I'll just blow it off and try to take measures so it doesn't happen again. I talked to Pat Kane at JHH and she said I could go get it re-stitched or I could try to hold it with steri-strips. Chris and I are going to give him a bath tonight and change his bandage. Before I put the bandage on we will put on the strips. Plus I'm going to put tape on the line and safety pin it to the inside of his clothes. We do the same thing with his NG tube. That way if the line gets pulled, it pulls the pin and not the tube. Hopefully that will work and we won't have to get it re-done. I don't want him to get a local and have to get more stitches. Am I even spelling stitches correctly? Whatever - you know what I'm saying...

Well, my head hurts and I'm swamped. I'm going to use the rest of my lunch break to eat something and try to unpack some of my boxes here in my new office. I haven't even started to unpack! Gee - I think I need a vacation!

Wednesday, January 12, 2005 7:24 PM

TIRED, TIRED, TIRED...My head is spinning from all the stuff I need to learn at my new job. But thankfully everyone there is willing to help me and work at a slower pace for a short while so I can try to catch on. My new co-workers (some of which I've know for 10 years but haven't worked with in a long time) took me out to lunch today and gave me flowers! How sweet! I know the people in the administrative staff - but I need to learn the other 100 people in the new building. It's so much to learn. Plus I have Kevin on my mind and all of the things that need to be taken care of for him such as his antibiotics, blood draws, medications, etc.

Kevin is doing really good. I noticed today that his IV had been pulled because it's bloody underneath the dressing and it's very obvious that it's not in the same spot as before. He cries when you touch it. The nurse didn't say anything to me about it. I'll ask her what happened tomorrow. I'm pretty sure I'll get a response like, "Oh, I have no idea. I didn't do it." He couldn't have done it himself. Hospice is coming tomorrow morning to take a look at it. He may have to go back to JHH and get it re-stitched. Let's hope not. But other than that, he's just peachy. He likes eating magazines and sitting in his swing. He's in it right now.

Yesterday the woman from the Infants and Toddlers Program (run by the county) came by to evaluate him. I've been waiting for him to be healthy enough to start therapy. She said he qualified for speech and physical therapy. Speech will work on his eating and swallowing and physical will work on strength. Hopefully that can start soon. He still needs to be evaluated by the people in charge of those 2 therapies. I was told that takes an hour and a half each and I have to be here. Ick - I don't want to miss work...but I'll do what I need to for Kevin. He's priority.

Judy came over to give me some info and we somehow suckered the poor woman into giving Gracie a bath! And wash her hair too! Gracie just loves her. Nina has learned how to administer Kevin's antibiotics so she'll start bringing Gracie home by 3pm and taking over for the nurse. I'll start getting home at 4:15pm after I start full time next week. I'll have the entire neighborhood trained to take care of Kevin in no time!

(Is it bedtime yet?)

I'm in the basement using the computer and I can hear Kevin upstairs dropping things onto the floor from his swing. He smiled for Nina a couple of times today. He doesn't smile much. So it makes you feel good when you get one. I'm going to get my butt upstairs and help with Kevin. (By the way, that little stinker pooped out of his diaper last evening and got poop all over the end of his IV! There was no way to save it. Luckily it was an extension that I had the hospital put on and I had them give me some for home. So I just had to remove that section of IV line and put on a new one. Either his aim is really good - or really bad.) I'm gonna run. I'll write again as soon as I can!

Tuesday, January 11, 2005 9:26 AM

I start work today part time. I'm sick to my stomach. Nerves I guess. It's a new place with new people. I'm not going back to my job that I've been for the last 10 years because they said it would be too stressful and they have a new group in the admin office now that's working out just fine. So I'm starting over. New boss and new co-workers. I feel like it's my first day of school. (Sigh...) But it'll be OK....

Not that things weren't bad enough....I found out that the day nurse isn't going to be staying. She told her company that it was too far for her to drive every day. She hasn't said a word to me. I called them to ask about weekend coverage and to tell them all the nurses were working out well. Then he told me that this nurse won't be staying. She said she would work for the rest of the week. When he told me, I thought I was going to throw up and poop my pants all at the same time. My stomach turned instantly. I start work now. I can't do anything about this. They will work on it. But it's not like a new person can come in and I just hand Kevin over to them. He has alot going on and they need to be trained for him. AAAAHHHHH! Lord help me please! My doctor put me on medication to help with anxiety - but unfortunately it hasn't kicked in yet! It would help if I could also remember to take the darn pills every day.

But hey - you are checking to see how Kevin is doing - not read about me having a breakdown. So, Kevin is doing WONDERFUL. He's staying awake a lot longer now - up to 3-4 hours at a time. And he loves his bouncy chair (that hangs in the doorway). He doesn't know how to work it, so we bounce it for him. He likes to swing in it too. Gracie likes to take care of him when he needs a push or bounce. He almost fell asleep in it last night. I took him out and layed him down and he was asleep INSTANTLY. I didn't even have time to put his B in his mouth - fast asleep as soon as he hit the pillow. He gets that from his Daddy. He got a bath last night too. I had to cut a little bit of his hair because it had gotten some bad tangles from when he was in the hospital and I couldn't comb them out. I also needed to change the bandage on his IV site. The IV had gotten tugged the other day and moved about 2 mm's. It's still stiched into his chest - but the stiches have moved down. It has some discoloration to it yesterday so hopefully cleaning it and changing the bandage will help. I'll keep my eye on it.

Well, I have to get ready to go to WORK. My hair is soaking wet....

Here I go....wish me luck!

Sunday, January 9, 2005 3:39 PM

Kevin has been doing quite well. He has his fussy moments - but he's feeling good I think. He plays and sits in the jumpy seat that you hang in the door way. He doesn't know how to jump yet - but he likes it.

The nursing situation seems to be working OK too. We had a new night nurse last night that will work twice a week. She seems to be pretty good. I'm comfortable with her. We have a new nurse tomorrow. I will be starting back to work this week part time. I won't go tomorrow so I can oversee the new nurse with Kevin.

We had to take him to Nightime Pediatrics on Friday night. His bottom molar thats coming in has a big buldge on top of it. I called the place ahead of time and explained that Kevin can't be around other sick kids. I went in when I got there and filled out the paperwork while Gan stayed in the car with Kevin. The lady told me to go get him and go into room 5. I did. I didn't even have time to take my coat off before a doctor came in and looked him over. She said he had a hematoma on top of the tooth. She said it would go away when the tooth broke through - but it would bleed a little. We talked briefly about Kevin and we left. The whole thing took 10 minutes. When we've been there with Gracie before we were there for over an hour at least. They treated us well - in and out. I was very pleased.

I have to run! Babies are crying and Gracie wants to type.

Friday, January 7, 2005 9:05 AM

He's home! He's a little fussy because he's sore in some spots - but overall he's alot better. We have a new nurse today. She seems to be doing OK so far. She says he cries alot. He'll get used to her (if she stays long enough.) He went for his other tests yesterday morning when we arrived and he did OK. They haven't called us with the results yet. His new central line is going to take some getting used to. It's difficult to get to and I have NO idea how I'm going to get him into the tub. But I'm sure I'll figure something out.

His cath doctor asked me yesterday what the plan was. I told him 6 more weeks of antibiotics. He said he needed to talk to the ID doctors. He thinks the heart conduit needs to come out. I said that these are the same fevers from August when he didn't even have the conduit. I am pretty sure the conduit isn't whats causing these fevers. There is no way Kevin went through almost 9 hours of surgery for this that could have killed him, just to have it un-done. I said something to Pat yesterday (cardiology nurse) and she said that word had already gotten to Dr. Vricella about that idea and he freaked out. There is no way that he's going to remove it. So I'm not going to worry about that.

We were told that the antibiotics that Kevin is on can cause hearing damage or loss. He's on the same as before - but he will be on them for 12 weeks total which is a risk. We have to get his hearing tested when he's finished and also keep watch on his balance and eye movements to make sure he isn't having dizzy spells or Vertigo. Just one more thing to worry about.

But we are happy to have him home. Last night was pretty hectic but Nina and Judy watched him for us while we got settled back in. Thank God! I probably would have just plopped to the floor and cried if they hadn't been here to help.

I need to go make our little man some food for the day. Hopefully he will be back to his regular self in a day or two. I'll let you know how he does.

Wednesday, January 5, 2005 8:29 PM

The day just stunk. I arrived early and Kevin hadn't gone for his PICC. They said he hadn't been off feeds long enough. He still went before noon - about 11am. I took him back to the OR and layed him on the table and stayed until he fell asleep. They said it would take an hour. One hour later they came out and looked frustrated. No PICC. They said they tried many, many times but couldn't get anything. They weren't kidding. He looks like a pin cushion! They called in the surgeon and I spoke to him before he went in. Chris and I have dealt with him before and he's a nice guy. It took him about an hour also and he got the central catheter placed in his chest. They went in a vein up by Kevin's jaw. So he has stitches there. He came out and into recovery. He was ANGRY! I couldn't control him. He never has reacted well after being put to sleep. They had to give him 3 doses of Fentenyl before it had the slightest affect. He went back to his room after 1 hour in recovery. Our friend stopped by and held him while he got settled. His new line in his chest started to bleed while in recovery because he was squirming around so much. He finally fell asleep.

BUT...he still needed the brain and abdominal scans! I wasn't letting them do that to him after the day he had. I asked if they could get it done in the morning tomorrow so he could still come home. They called the doctor and he came by. He called radiology and Kevin will go for his scans in the morning. He should still be home sometime tomorrow. We'll just keep our fingers crossed.

Well, I hear Gracie screaming. I need to get her to bed. We'll let you know if we get him home or not. (But we are planning on him coming home!)

Wednesday, January 5, 2005 8:14 AM

I don't have time today either...Kevin was supposed to go to the OR at noon for a PICC line but they called after 7am to ask if they could take him early. I need to leave so I can try to be there when he gets to the recovery room. He's cranky after anesthesia.

He didn't have a good day yesterday. Alot of pain for him. They were going to do his PICC line at his bedside. I wasn't thrilled with that because you can't put him to sleep, you can only sedate. Kevin sucks up that kind of medication like water so I didn't think he would be comfortable. I told them they could try - but if he was miserable - they had to stop. If they got the line in, he could have come home today. They took some time to figure out what kind of sedation to give and how much. When they finally got it and went to put it in his IV - the vein blew and the IV was no good. So, they tried to get him a new regular IV so they could give him the sedation for the PICC. They tried 3 times. That poor kid was screaming and sweating head to toe. I told them to stop twice so I could comfort him. The last time I told them they were done and they agreed. He could have a stroke or heart attack with that kind of stress. They said they could try again, but he needed something to calm him first. Something either through his NG tube or up his rearend. Unfortunately the med they could give wasn't good for his liver. There was no way to tell how the liver would break it down, if at all. So they ended up giving him a shot of morphine in his thigh. He was pissed. Chris had shown up after 1pm which was a big help. I had to leave for a doctors appt for myself and I couldn't stay to make sure he got his IV in and was comfortable. Chris stayed and they ended up getting a new IV in his hand. They put him on the OR schedule for a PICC today - but as I said, he was called early. He should be home tomorrow. After his PICC he will have a brain scan and a body scan. The blood flow in his heart flows opposite than a normal heart. They said he could have an embelism in his brain because of this (but very doubtful.) I don't mind them checking. So, he should be home tomorrow sometime. We are trying to get nursing coverage back in place. Booky is gone because she just wasn't right for him. Her negatives outweighed her positives. OK - I have to run. Wish him luck!

Tuesday, January 4, 2005 9:03 AM

Sorry but I have to rush this morning. As of yesterday - no doctors came in to speak to me. I even had them paged. I think it was because they had no idea what the plan was for Kevin. I got in touch with the cardiology nurse (Pat) on my way home from the hospital (right after some guy swept over 3 lanes of traffic and almost side swiped me.) She said that the doctors were waiting to hear from ID. She had overheard several plans. One was even to remove Kevin from the antibiotics to see what happens. DUH. What the hell do they think will happen? What's the point in that? She called again this morning. She said that Kevin will be put back on the 2 antibiotics and go for 6 more weeks. Instead of the Gent stopping after 2 weeks and keeping him on the Vanc for the whole 6 weeks, they are going to keep him on both antibiotics for the entire 6 weeks. He will also be getting a central line in his chest. That will be much sturdier than a central PICC. But bathing will be difficult. And the antibiotics will take almost 2 hours to administer each round for 3 times a day. What a pain. But if it will get him better - we'll try it. I sure hope it will work this time. I have to run. I'll give our little guy lots of hugs and kisses from everyone! (That will take me all day!)

Sunday, January 2, 2005 5:38 PM

Kevin's doing better. Same old thing. You hook him up to antibiotics and he does fine. We ran in to the GI docs as they were leaving the ward. They said they still believe it is endocarditis and needs to be treated longer. But they will be performing a liver scan sometime tomorrow to make sure it looks OK. They are also going to put him on another liver med. One that will help with the bili count. We didn't see any cardiologists today so we don't know what the plan is. I don't even think they know. If they are going to put him back on IV meds - get the line in and get him home. They asked for an RSV test today. The nurse said that I had told them, "No". They asked for it in the ER last night too. I refused it then also. I knew they would try to be sneaky and ask for it when I wasn't there. So I had told the nurse this morning that he wasn't to have the test and no bladder caths either. Kevin doesn't have any symptoms of RSV and he's had the Synagis shots the last 2 months which helps prevent RSV. It's a painful test for him and he's had enough aggrivation.

It was a help last night that when we arrived in the ER we knew the nurses and the doctors from being there all those other times. They were all familiar with Kevin so we didn't have to explain the entire story. He was able to rest in the ER also. (When they weren't bothering him.) He was so tired. His fever was 104. He required oxygen when we arrived too. His sats were 69. He was able to come off the oxygen at 2am this morning and is still doing fine without it. Hopefully he can come home in the next day or so. I'll know more after I speak to a doctor tomorrow. I must say that I enjoyed not having to make that trek out to Baltimore every day for the last month. I don't like going alone either. But it shouldn't be for long....

Saturday, January 1, 2005 3:08 PM

Kevin is up to his old tricks again. Cried practically all night long. I got to sleep from 6am to 7am. Then Gan, Nina and Aunt Alice took over for a couple of hours so I could nap. I sure needed it. We had some people over today to celebrate Gracie's birthday. We were having people arrive at noon. I had already called the hospital at 11am and they told us to bring him in. I said that we wanted to start the party and then would come in. But our friend Judy held him the entire time of the party and he stayed content so we could celebrate with Gracie. (Gracie had a bit of attitude today. But I let her live.) We are getting ready to leave for the hospital now. His bag is packed and we're ready. I'm upset that this happened to him so quickly. I cried when the doctor told me to bring him in - she said she was sorry. Not as sorry as us or Kevin. We'll keep in touch to let you know what's happening.

Friday, December 31, 2004 7:42 AM

I only have a minute. Our poor baby has been MISERABLE the last few days. His teeth are really giving him a fit. The molars are coming in and they are coming in SLOWLY. Since his nutrition is absorbed differently because of his liver disease they don't come in at the normal rate for a baby. They are so swollen and painful for him. Motrin stopped working for it. I called hospice yesterday morning because he had such a bad night. They spoke with their hospice doctor and he said to double his methadone dose. I've been trying to get him off of that - I hated to double it. But they said it would help with his pain. It didn't work. Even in conjunction with the motrin. They came by to check him out and the nurse agreed it wasn't working for him. I requested oxycodone. She agreed and called the doctor back. She called last night to tell me that he approved the oxycodone. I'm going to have to wean him off this stuff eventually - but he needs it now. This poor kid is so used to drugs like that - it takes so much more of it to help him. I remember after his last cath the anesthesiologist came to me and said, "Boy - he just sucks up the medications! I had to give him 3 doses of Fentanyl before it started to kick in." The oxycodone should be here today. I will take his methadone back down to his normal dose once I start the oxycodone.

We have a nurse today - but then no nurse again until Monday morning! They don't have anyone to work nights for us and we don't get weekend day nursing anymore since he is no longer on the antibiotics. It's going to be a LONG weekend. I only have 1 week left before I start back to work. I'm a nervous wreck. I'm not happy with the nursing situation either. This woman is just so damn lazy. I've spoken to her about interacting with Kevin and she says, "OK", but it doesn't seem to be kicking in. Since she's pregnant I don't think it will be getting any better. (Sigh...) Too much to worry about....

I need to go help Gracie feed her Barbie's now....
Gracie turned 3 yesterday. We asked what she wanted for her special birthday dinner and she requested a waffle. That's what she got! OK - she's really bugging me about the Barbie's - gotta run!

Happy New year!

Tuesday, December 28, 2004 9:38 AM

AMENDED AT BOTTOM FOR IV STATUS!!

Gosh - where do I start? We've been busy these last few days. I'm sure you all have too. I hope everyone had a great Christmas!

Let's see....Thursday night the Hospice pharmacist came to deliver some meds for Kevin. He brought one of the other pharmacists with him that wanted to meet Kevin. They brought Kevin a Christmas present! That was so sweet. They always ask me how he's doing whenever I call for something and they have pictures of him at their work. He's touched so many people.

We had a nurse Friday night - but none on Friday during the day. We didn't get a nurse until last night (from Friday night.) I was TIRED! I stayed up with Kevin on Saturday and Sunday night. We crashed in the living room. He did rather well. I got maybe a total of 3-4 hours of sleep both nights. In little chunks. No nurse showed up yesterday during the day but I figured I would just nap when Kevin did. My mom was going to help for a couple of hours too so I could rest. Didn't happen. Gracie came down to the living room at 5am. So she layed across my lap for a while until Kevin got fussy. She started to throw up at 6am. Lovely....just what I needed. I called Nina at 7am and asked her if she could come to the house and watch Kevin and I could care for Gracie upstairs. I'm lucky she could. I had to keep Gracie away from Kevin. Plus I figured if I could get her to nap, so could I! She threw up just about everywhere and on everything. I stopped putting her in pajama bottoms because I ran out of them. I had her on water only all morning. She kept throwing that up. She fell asleep after noontime and slept for about an hour. So did I. After she woke up, I gave her some plain toast and crackers. She did fine. That night she had EXTRA dinner and still did OK. I didn't want her to eat much - but she kept begging for more. She's perfectly fine now. I hope I don't catch it.

Christmas eve we went to Bowie to Nana's house. Kevin was almost perfect! He took a little catnap while we were there. He was up for about 6 hours. He liked watching everyone open their gifts. His cousin Katie gave us a break and held him for a while. Gracie had loads of fun with her cousins. She was asleep within the first 3 minutes that we got into the car. Of course Kevin stayed awake the ENTIRE way home! We got home and had Gracie put her "B"'s into a baggie for Santa to take. She started to cry for about 1 minute. It was because Chris put them into the baggie, not her. So we took them out and she did it. She took the last "B" out of her mouth and put it in the baggie. No problem. She asked for her "B" the next afternoon. I told her that she gave them to Santa. She said, "Oh. OK." She's only asked 3 times since they've gone to "other babies". She went to Gan's house and asked her for one and Gan told her that Santa took them. Gracie said, "Not yours too!" But she's been absolutely fine without them. I can't believe how easy it was for her. I felt bad that she didn't have one for yesterday when she wasn't feeling well - but she did OK. No turning back now!

Kevin slept through the gift opening on Christmas morning. Gracie really got into it. She became a little present hog after a while. She will get a few more this week for her 3rd birthday! She loves everything that she received. Everyone treated her (and Kevin) well this year. Chris treated me pretty well too this year. I got a 3 stone ring that I've been craving for a couple of years. It looks beautiful.

So, I got some rest last night but I woke up with a stiff neck. It's feeling a little better now. Gracie woke up with PMS and I practically shoved her butt out the door with Nina. (Poor Nina.) While Gracie was having her little "moment", the nurse came down to tell me that Kevin's PICC line had infiltrated. Oh goody. His arm is OK though. No swelling or irritation. I called the cardiology nurse and she said she would find out what the docs wanted and would call me back. Some orders say that Kevin can stop the IV meds on 12/30. Some say 1/5. I told her that I rather him get a new line and go until 1/5. I don't want to stop them early and have that damn fever come back. Then they will say it's because he stopped the antibiotics too soon and we have to start over! She called and said they could re-thread it. Not happening - the line came out. All the way out. So she has to get a hold of the ID doctors to see what they suggest. She knows that Kevin doesn't do well when his antibiotics are terminated too early. She agrees with going until 1/5. So, I'm waiting for another phone call. We'll see if he needs to go back in today to get a new line put in or if they can swich him over to oral meds. Oral would be nice - but I had asked about those before and I was told it wouldn't work for Kevin. I told the nurse that and she said that he if far along enough in treatment that he might be able to get them now. Let's hope so. We just can't have a day without any drama!

By the way - I also got a certificate for a 1/2 hour massage from my sister. I've never gone for a massage before. I think I might be able to get that done at the end of this week! Now I need to hire a limo to bring me home afterwards. What's the point of a massage when the drive back home is just going to stress me out? Wouldn't that be nice? I wish I was rich....ah well, maybe in my next life.

I'll keep you posted about the little stinkers IV! Take care!

The doctors all sat down and had a pow-wow regarding Kevin's PICC. They recalculated the dates and said he should come off the IV meds on 12/31. His cultures that they took 2 weeks ago still haven't grown anything so they decided to take him off the IV meds now. They think that he should be OK. The stress of having him go back to the hospital and going under anesthesia for a new PICC for only 3 days worth isn't worth the risks to Kevin. They understand our concern about him getting another fever and having it blamed on not getting the full course of meds - but they said it should be fine. We'll just keep our fingers crossed and pray that he stays well.

Thursday, December 23, 2004 10:32 AM

Sorry it's been a couple of days since I've updated. I haven't had any nursing help during the last few days and he's been keeping me on my toes. He's still doing good. He gets whiney and fussy at times but Motrin seems to help with that. I think it's his teeth. He hasn't had a fever so I'm not going to worry about it - yet. We are still working on the baby food thing. He's not much in to the apple sauce. He's tried bananas and seems to like those better. He really doesn't eat much of it at all. Not even a big spoon full. He doesn't understand how to open his mouth and eat. He just sticks out his tongue and I dab some food on and he takes it in. But at least he's getting a taste of something. Plus he is almost sitting up by himself. He is SO close. He can sit on your lap without you holding him up and he can sit on the floor in a boppy pillow. He can do it for about 10 minutes and then he gets tired and starts to sag forward and whines. He gets tired so easily. He only stays awake up to 2 hours at a time before he needs to take a rest. I guess it's his condition plus some of the medications he has make him sleepy.

He's getting really good at pulling hair too. He doesn't just grab a big handful - he goes for a few at the back of your neck that make your eyes water when he gets a hold of them. We're working on rolling over now too. He only seems to do it when he's angry. He almost fell off my lap yesterday by rolling. I've been contacted by the Infants and Toddlers program per my request. They will come out to the house on 1/3 to evaluate Kevin and see what kind of therapy he needs. They provide physical, occupational and speech therapy. He could use all 3. The speech therapy will help with his eating. Occupational will help with hand control and stuff like that. Physical will work on his muscles. I'm looking forward to it. At least he will get some interaction while Booky is with him since they will come to the house once or twice a week to work with him. Booky just seems lazy to me. I don't think she is the one for us. We'll see. I'm running out of time to get this nursing crap straight. I don't have a nurse for Saturday or Sunday night yet. Nikki works Monday through Friday. They already asked her to work the weekend and she said she couldn't. I understand. That's just too much for one person. If I have to watch him at night this weekend, I'm going to be one tired mommy.

We received a letter from the Yound In Heart Senior Club the other day. They have adopted us for Chrismas this year and sent us some money for Kevin! I'm going to put it in his savings account. I haven't made any deposits for him since we were told that he was "terminal". What was the point? But now there is a chance he just might make it. So we need to start saving for him. And if he doesn't, I can use his savings to make a donation someplace in his honor. (But that won't happen.)

I have to go meet with Dr. Uma and the state dept lady to renew Kevin's nursing. The meeting was supposed to happen in September - we're a little late. We also need to discuss getting Kevin up to date on his vaccinations. He needs alot of shots to catch up. He only received his 2 month shots. I didn't see a point in getting them done after that when he wasn't supposed to live. He didn't need to go through the pain of them for nothing. Poor little guy. Well - I need to get my hair brushed and get to that meeting. I will write after Christmas to let you all know how it went for Kevin's first Christmas at home!

Merry Christmas to everyone! And photos will be coming soon! I promise!!

Monday, December 20, 2004 1:59 PM

Kevin came home on Thurday evening and he has been doing fine ever since. I ended up giving him Advil yesterday morning because he was laying there trying to sleep and he was whiney. He didn't have a fever, but you could tell something was up. He had chilled out 15 minutes after getting the Advil and went to sleep. He has some molars coming in at the top - maybe those are bothering him. The molar areas on the bottom are looking like they might pop through soon too. But overall - he's doing really well.

We have a day nurse now - Booky is her name. I don't know how this will work out. I'm giving her a shot. Our night nurse (Nikki) is doing great. So our nurses are Nikki and Booky and our pet birds names are Nicky and Pooky. That's why Gracie said, "Hello Pooky" the first time she met Booky. That's easily confusing to anyone. Booky is from Africa and is very...I'll say strong-willed. She doesn't listen and she wants things done her way. That's fine on some things - but there are things that I want done the way Kevin is used to. She is good with the meds and knows how to draw them up. I had a little problem this morning because he was in his room with her and he was fussy. I went up at 8:30am. I asked if she gave him his 8am meds....No. Why not? Because she didn't want to leave him. Then open your mouth and tell me to help or bring him down with you to get the meds. You don't just not give them. One of the 8am meds is his methadone. He shut up after he got that one. On her first day she had to change his diaper and his outfit. He was so pissed! I told her to lay him down and he would quite down. She said, "No, I need to hold him." I told her that he wanted to lay down and that would settle him. She kept arguing with me and he kept crying. She was sitting on the couch with him on her lap. Then I leaned down about 4 inches away from her face and said, "Booky, I'm his mommy. I've been taking care of him his entire life. I know what he wants and I know what will settle him down. You need to listen to me and learn what he likes." Then I took him away from her and layed him down. He shut up instantly. It was her first day. You don't come in and act like you are taking over. She irritated me. She also tries to keep him asleep and doesn't interact with him. That's a problem for me and I've spoken to her about it. She hasn't been on time yet and she lives very far away. But, like I said...I'm going to give her a chance. Maybe it'll get better. I have to go back to work on Janurary 10th and I'm scared to death to leave him here alone with someone. But I don't have a choice.

Kevin will have his next cardiac cath on Janurary 25th. They aren't sure they will be able to do what they need to. It may require heart surgery which would be scheduled a week later. I'm just starting back to work. I can't take off to be with him for his recovery. I can take off for the days he has surgeries or procedures. But when he has to stay to recoup or get brought home - Chris will have to take off work. I've been out of work for over a year. I can't do it anymore. But I wish I could. I hope Chris' work doesn't have any major problems with it. He may lose his company van if he is out too much. Then we will have to buy another car since we only have one. That's not an expense we need right now. But I'm not going to worry about it yet. One problem at a time.

I'm going to go wrap a couple of presents since I have Booky for another hour to help with Kevin. Keep praying for us - this doesn't seem to be getting any easier...

Thursday, December 16, 2004 1:07 PM

Kevin will be coming home today. He seems to be back to his old self again. I had to wait to leave because I had a meeting with my supervisors today about coming back to work. My first day back will be Janurary 10th. We still don't have anyone to watch Kevin during the day yet. The company better get one soon that I'm comfortable with. I'm not just leaving him with anybody. Hopefully it will all fall into place. But I'm very nervous about it.

I called the hospital to make sure Kevin was still doing OK. He is, but he can't go home just yet. They are working on his getting the level of his antibiotics corrected and he can't go home until after 5pm. Rush hour. Dad will still go with me and we will need to leave by 2:30pm or we will hit horrible traffic on the way there. But I'm glad he will be coming home. He was only gone 2 days - but I missed having him here. So did Chris and Gracie.

I'm going to finish getting his stuff together and mix up some of his formula so it will be ready when he comes home. You'll hear from me soon!

Wednesday, December 15, 2004 8:11 PM

Kevin didn't come home today. His fever had gone down some but then it went back up again when I was there. Almost back to 104. He was so miserable today. Nobody could figure out what his problem was. It was hard to handle him today. It just wears on you after a while. We are planning on him coming home tomorrow though. As long as his fever goes away and stays away. When I called this evening his fever had subsided and he was resting. He had gotten his methadone dose and some Motrin before I left at 4:30pm today. I didn't want to leave until he settled down and was able to rest. He had blood taken a couple of times today to test his antibiotic levels. Unfortunately it had to be done by stick instead of his central picc line. But he did OK.

The nurse said they would keep him on Motrin around the clock but I don't want them to. I told her that we need to see if the fever comes back or not. She understood and they will not give him Motrin again unless the fever comes back. Hopefully his reaction was from all the dye put in his system from the cath. We don't know. I just want him to get better and come home. (Gracie just found me so this is going to get cut short.)

His next cath will be in one month. Probably 1/25. They had days open sooner than that, but I'm going back to work and I don't want to take off immediately after starting.

Well, keep your fingers crossed that he gets to come home tomorrow. It will be in the late afternoon. I have a meeting with work and I won't get to the hospital to get him until after 2pm. I'll keep you posted!

P.S. - I know some people have sent me e-mails and I want you to know that I do read them and appreciate them. I can't respond because that e-mail account has issues. I can respond to e-mails sent to my other e-mail account (kmclane1211@verizon.net). I don't want you all to think I'm ignoring your e-mails because I hadn't responded! Thanks!!

Wednesday, December 15, 2004 10:28 AM

Kevin's cath went well. Before they started Dr. Ringel said that he hoped to be able to stretch out Kevin's pulmonary arteries (PA's) on the right side for this cath using balloons. He said the last resort would be placing a stent which would have to be removed by a surgeon at a later time. They called us every couple of hours to let us know that he was doing well. They ended the cath early (about 1:30pm) because they had reached the limit of contrast dye that they were allowed to use on a baby of Kevin's size. The doctor came out to speak to us and told us that he had to place a stent in Kevin's artery because of a tear that occured. Part of the inner wall of Kevin's artery tore and was flapping as the blood passed through the PA. Placing the stent pushed the lining back into place and it should heal before the stent will have to be removed. He showed us pictures of the before and after. There is a HUGE difference in the size of his right PA now. The pressure in the right side of Kevin's heart has also decreased. It is the exact same pressure as in the left side. Ideally it should be less than the left side. But in a kid like Kevin they are pleased with the result and said he should be OK. He also said that the SPO2 readings that we've been getting for Kevin are inaccurate. He measured Kevin's SPO2 internally and when he started they were only 71. When he finished they were 78. He thinks that maybe the light used on the SPO2 monitor is picking up the yellow in Kevin's skin tone and giving a false reading. He's been in the high 80's to low 90's. So Kevin isn't anywhere near being ready for the liver transplant. The next step is to work on the left side of Kevin's PA's. That will be in a couple of months. When he showed us the pictures we saw how screwed up the left PA is. It's very curly and tight at the beginning and the end. He said he isn't sure he can even do anything with them in a cath lab. He would try to enter through Kevin's neck and fix it that way. But if he can't, he said the first part of the left PA could be corrected by a cardiac surgeon. The other side could maybe be corrected by surgery, but they would have to enter through Kevin's side by his ribs. Chris and I are just happy with the results and will worry about the next step when the time comes.

Kevin was admitted into Intensive Care afterwards. He was VERY upset and hard to control. I couldn't calm him down. He was 8 hours overdue for his Methadone and he also hadn't eaten. Dr. Ringel came in and removed the boards from Kevin's legs. Kevin got his Methadone a minute later and he calmed down and went to sleep. He felt warm to me. He just kept getting warmer and warmer. Then he was just plain HOT. His temp was 103. I requested Motrin. (I should have had to request that - but they don't think sometimes.) They had to stick Kevin to get some blood for a culture. As of this morning nothing has grown. He got his Motrin and the fever was UP to 103.7 an hour later. He was discharged from the PICU to the 6th floor. That was about 7:30pm. He finally passed out and Chris and I left shortly after 8pm. I called this morning and they said his fever went up to 104.1 over night. They said he had a horrible night and was still pretty fussy. His fever is down now - but he still has one. The doctor hadn't been by to see him at 8am when I called. Or at 8:30am when I called again. I'm not sure if they will be sending Kevin home today. Probably not with a fever. They said they would call me after the doctor saw him to let me know if Kevin will have to stay or not. Dad has to go with me to help me pick Kevin up if he's coming home. But if Kevin isn't coming home I don't want to drag my Dad out to Baltimore for nothing. They said they would call by 10am. That's passed. I hope they call soon because I want to leave to get out there. I guess I'll go call them! I'll write again tomorrow morning to let you all know if he's come home or not. God Bless!

Sunday, December 12, 2004 7:54 PM

I'm going to make this one brief because I need to go help with Kevin, but I'll tell you everything about his check up on Friday.

We arrived about 30 minutes late because of the rain and horrible traffic. But it was OK. First he was weighed and measured. He is up to 26 inches long and 16 pounds 14 ounces with clothes and diaper on. HUGE!! He's never been that big! That's 7.66 kilos. Then we were called back and the GI nurse saw us and the nutritionist. I asked about him getting some rice cereal because he wants to eat so badly. I let him have a smidge of chicken gravy the night before and licked a Tootsie Roll for a little bit. He knows that you are eating in front of him because he tries to grab it and sticks out his tongue. She said it would be OK. I also asked her about him taking only 44 cc's an hour. She said it was normal for kids like him. They don't want to stretch out their stomachs with too much food because it would put pressure on the rest of his organs because of his enlarged liver. I guess that makes sense. Then Dr. Schwarz came in. She said, "So, they tell me you have a little fighter on your hands." We sure do. We asked her about Kevin getting a G tube. She said, "He's pulling it out alot?" I told her he was and she told me NO. I was bummed. She said it was too dangerous for Kevin because of his liver. It could cause internal problems. I asked her to check his hernia and she said it was OK. I also asked her to check his penis. Since he wasn't circumcised I need to start to pull the skin back to clean it - but it's been stuck. She got it back. He was VERY unhappy. His little pee-pee hurt him all afternoon. He didn't want it touched with a baby wipe or anything. It's gotten better since. She told me that she heard he wanted to eat. She said he could have baby food fruits (stage 1). He would get no nutrition from it, but it would be good for him socially. We already tried applesauce. He doesn't know to open his mouth for the spoon so it's pretty messy. He sticks his tongue out and I dab a little at a time on his tongue. Then he gets it on his hands and just licks it from there. Very messy.

We had to also have his blood drawn while we were there. They couldn't draw it from his central line so he had to get stuck. It went smoothly. We got home about 2pm. It was a long day for him. He was fussy that afternoon and nighttime. We had a new nurse that night and I warned her that he wasn't feeling well. He had also spit up some blood that afternoon. I called the GI nurse and she told me not to worry about it. It went away.

I don't know what is going on with our nursing situation. We have someone new coming tomorrow and Wednesday. Tuesday we don't need anyone because Kevin will be at the hospital. We have to leave at 5:20am to get him there in time. We were told it will take 5-6 hours. Oops - I hear him fussing. Gotta run! Take care!

Thursday, December 9, 2004 10:30 AM

Another nurse bites the dust! I think RN in her case stood for Retarded Nurse. She was a night nurse. She lasted one night. She was nice - but if you have no brains, nice just doesn't cut it. She didn't handle Kevin very well either. He wasn't comfortable with her. She didn't know how to open his IV line or hook up the IV fluids. Or flush his IV. All these are things an RN should know. She couldn't draw up his 3 medications she needed to give. She didn't understand his medication chart and then couldn't figure out how much medication to put in the syringes. So I didn't sleep that night. I got up early to make his early morning medications. I wasn't letting her do it. I figured she could at least give them to him....wrong. After she left, I went into his room to get the syringes. Almost all of them still had some medication in them. Some as much as 1/2 a cc. If his dose is 1 cc and you leave 1/2 in the syringe he isn't getting all of the medication he needs. I gave the rest to him. I also found him with dried poopy on his clothes in the morning. I called the nursing company and told them I didn't want her back and I would watch Kevin myself the next night. But luckily the other night nurse came back to watch him. I slept good last night.

We also have a jerk for a hospice nurse. She's been out a few times. I REALLY don't like her. She is condesending and I don't appreciate it. Her supervisor called me this morning and I told her how I felt. She said she would say something to her. Gee - that would just make her even more nasty. I asked her not to, but I know she will. I told her that I will keep dealing with this woman but when I've reached my limit I'm going to tell her how I feel. I tried to get off on the right foot with her yesterday and offered her a snack and drink when she arrived. By the time she left I wanted to ring her neck. Actually, it wasn't as bad as it had been before with her. Nina was here to help me. I asked her to stay because I didn't want to be alone with the hospice wench. But she called this morning and was nasty on the phone with me. AAAAHHHH - I just don't like her! I get along with practically everyone. I'll just deal with it until I snap one day and wring her little neck. She is supposed to come out this afternoon and I told the nurse that I would just disappear when she got here.

By the way - your little man is doing just fine. He had a yucky evening last night though. We needed to change the tape on his face - but we were going to wait until after his bath. Bad move. His tube came out in the tub. I tried to push it back in, which made him angry. So he pooped in the tub (with me and Gracie in it.) Then the tube ended up coming all the way out. I gave the baby to Chris and me and Gracie stood up and showered off and washed quickly. I got Gracie settled and helped with Kevin. The nurse wasn't coming until 10:30pm so I couldn't wait that long to put a new one in. Chris needed to get up at 3am for work and he was tired. But he had to help me put in a new tube. It went smoothly. We can't keep putting new tubes up his nose every 4 or 5 days. I sure hope they will give him a G tube.

The cardiologist cath nurse called yesterday. They had talked about Kevin in their monthly meeting last week. They decided that he needed to come in sooner than the 21st for his cath. The pressure is too high in his heart and they want to get started on getting his pulmonary arteries stretched out. He may need several caths before his sats will get to where they need to be. So he will be going in on Tuesday morning and staying overnight for just one night. They said this cath should take 4-5 hours. Chris and I will be nervous wrecks - but we know in our hearts that he will be just fine. We can't help but worry.

By the way - Kevin is on his way to being able to sit up on his own. He's getting stronger. He needs very little assistance. Plus he rolled over this morning! I don't know if he will do it again soon. The only reason he rolled was because he was very angry and having a fit right before he rolled over.

I've got to get some phone calls made on Kevin's behalf. I'll write on Saturday to let you know how his doctors appt went! Take care!

Tuesday, December 7, 2004 8:20 AM

Kevin is doing great. He loves being home. The nursing is doing OK right now. We have a new night nurse coming tonight. I haven't met her yet. She will be working 4 nights a week and Evelyn, the director of nursing at the company, will be working the other 3. Evelyn likes working with Kevin. She said she wants to do it full time and she was going to speak to her supervisor about it. She does well with him. We have another nurse for this week. She started yesterday. She's OK too. But she is for this week only. They are trying to find someone long term for me. I need to get to know them before I have to go back to work. I'm getting nervous about that. It should be OK.

Kevin is happy. He's smiled every day since he's been home. I was tickling his neck with my mouth last night and he was giggling. He tosses his head back when he laughs. I wonder if it has something to do with the tube in his throat. Hopefully we can get rid of that soon. Last week he threw it up and it came out of his mouth. So it was up his nose and out his mouth. I had to pull it out through his nose. Then I had to put a new one in the poor kid. He fights it so much. He's just too old to have it in and it's been too long. Hopefully we will get alot of answers on Friday to my questions. (I need to write them down so I don't forget.)

Gracie's flight to the North Pole was fun. When we arrived and were getting out of the car she said, "Santa will think I'm so beautiful in my dress." That's because we kept telling her how beautiful she looked that morning. She had never been to the airport before. She was excited to see the big planes. She held up the security line for a minute because she didn't want to walk through the detector by herself. Finally I just kinda shoved her through. We got on the plane and they made us close the window blinds. They wanted the kids to think they were really flying. Grace didn't like that. Of course she wanted to see. Then she got bored. She wanted to get out of her seat. We had to wear our seatbelts because we were moving. We actually went from Gate C over to Gate B. The North Pole was a waiting area all decorated. They had carrolers, breakfast, coloring and Santa and Mrs. Claus. The Orioles Bird got a hold of her and tried to eat her head. She liked him. She was the 2nd person to sit on Santa's lap. She kept telling me she wanted a Christmas Tree and she was going to ask him for one. She got on his lap, looked at him, then looked away and slowly sank off of his lap and came to me. She didn't say a word! She wouldn't even get back on for a picture. She got a wonderful gift from them. It's a horse drawn carriage from the Princess and the Pauper. It's very nice. Kevin wasn't able to go, but he got a puppy toy and some blocks. We all had a good time and Kevin did just fine with the nurse. She said he was wonderful all day. We've had a couple of people tell us that they saw her on TV that night. We knew the camera people were there - but we only saw Baltimore channels and we don't get those channels on our TV. I didn't bother to watch our regular news that night and I missed her! But some of you got to see her!

Kevin went to Dr. Uma's yesterday for a couple of shots. The second half of the flu and his Synagis. I took the new nurse with me. We had to wait for the Synagis shot to get mixed. It took 30 minutes. I asked why it wasn't done before we got there. Dr. Uma's nurse said that they can't mix it until we arrived because if we didn't show up the shot would be worthless and it costs $1,000 per shot! Can you believe that? ONE THOUSAND DOLLARS A SHOT! Kevin gets them once a month until March. That will be $5,000 for his Synagis shots! Gosh. Anyways...the first shot was terrible! There was alot of fluid that needed to be injected into his leg. The 2nd shot was really quick. I don't know which shot was which. Hopefully the Synagis was the quick one since he has to get more of those. We also have to catch up on his normal vaccinations. He's only had up to his 2 month shots. We didn't bother before because he was terminal. We didn't see any point. But now that he stands a chance at surviving - we need to get that worked out. I had given him Advil before we left to make the after effects not so bad on him. Hopefully his legs didn't ache too much afterwards. He didn't seem to be cranky when we got home. He slept for a long time though. He sleeps when the nurses are here and then is awake for me the rest of the evening. Little stinker. Speaking of stinker...he didn't poop one day from 6am to 3pm. I just KNEW he was going to "get" me. It was 4pm and that kid let loose. I even had to change the cover on his bouncy seat that he was in! It was behind his knees and on the bottom of his feet! He got a good long tubby that night. Yuck!

Thank you all for checking in on us every day and keeping us in your thoughts. Kevin is doing so good. He was weighed yesterday at the doctors office. I'm not going to tell you what it was because I think it was wrong. I will wait and see what he weighs on Friday and let you all know then. But he does seem to be putting on weight since he's been home....love you all! Take care!

Friday, December 3, 2004 2:21 PM

My stupid computer is having issues...

Kevin is still doing great. Still throwing up here and there - but overall doing good. He goes to the doctor for the 2nd half of his flu shot on Monday and his Synagis shot which he gets once a month to keep him from getting RSV. He goes back to JHH clinic on next Friday. GI and Cardiology. I'm going to ask GI a few questions. I think they need to look into why he can't take much food (1 ounce an hour), the possibility for a G-tube and get rid of the NG tube and to look at his hernia. He has one from the first heart surgery above his belly button and it just keeps getting worse. Cardiology told us that he is tentatively scheduled for his next cath on 12/21 and would need to stay overnight. But he'll definitely be home for Christmas! His last Christmas sucked. This one will be much better.

His antibiotics are going fine. He stops one on 12/8 and the other stops on 1/5. They are pretty easy to administer - but they take a long time. The night nurse from his first night tried to put the antibiotics into his NG tube. I was standing right there and I stopped her. I had stayed up until midnight to make sure she was comfortable doing it (his dose was due at midnight). I wasn't comfortable going to bed after that. She didn't know what the hell she was doing. Before that I watched her put his diaper on inside out! Not backwards like that other idiot - inside out! I told her it was the wrong way and she corrected it. She isn't coming back. We have a wonderful nurse during the day. Of course that's too good to last. And it won't. She is moving to Arizona on 12/21. Just our luck. But she will be here working sometimes until then. It's better than nothing. The person who came last night to watch Kevin is the Nursing Director of the company. She's an RN also (like the daytime lady.) The nights she watches Kevin she won't work her day job in the office. I felt bad at first. But then I figured they need to do whatever they need to in order for us to be covered. I don't mind. She obviously knows what she's doing and can handle Kevin just fine. She's pretty nice. The daytime nurse will be switching to night nursing for Kevin and I will be getting an LPN during the day. I told them I'd rather keep this lady during the day - but I can't. Hopefully I can get a good daytime person and train them before I have to get back to work. I told them, "No more idiots please." I don't know what's up with some of these people out there these days. Thick as bricks.

Well, I have to go vacuum while Kevin is awake. He spent time in his exersaucer today. Just about 15 minutes - but it's a change for him. And it's good exercise for him. This nurse leaves at 3pm and I need to get some things done first! Take care everyone! (Pictures will be coming soon!)

Oh, and I almost forgot! Kevin had a good soak in the tubby last night. He hadn't had a real bath in a couple of months. It wasn't as hard as I thought it would be because of his arm. I just put the end of his NG tube along his arm and wrapped his arm where his PICC line is with a cloth diaper and taped it up. We just kept it out of the water and it was OK if it got splashed. He had a really good time. He still likes those Barbie's in the tubby! OK - that's it. Now I'll go!

Thursday, December 2, 2004 6:00 PM

I only have 2 seconds. I will update tomorrow morning. The night nurse from last night has already bit the dust - she won't be coming back. She was an idiot and idiots aren't allowed to take care of my son any longer. Kevin is doing really well and he had a great first night home last night. I'll tell everyone about his day tomorrow morning! Thanks!!

Wednesday, December 1, 2004 8:19 AM

Well - I think we have a nursing company that can staff us with what we need. Another company called me Monday night because they had told the woman at the state dept that they could staff us with RNs. They called me at 8pm. Actually, the nurse who was supposed to start called me. I had no idea what company she was from or anything. She had a pretty cruddy personality. I called the person who is in charge of the nursing at that company after I got off the phone with the nurse. I told her that this nurse said she was an LPN. She said that they are all LPNs. She said it is too hard to find an RN to work with the program that Kevin is on because it doesn't pay enough money. What the hell? I thought the whole purpose was to get Kevin RN staff. She had none. If he could come home on LPN staff then he could have been home a week ago! Then I asked this woman about the weekend nursing. She told me that one woman would work 11am Saturday to 7am Sunday, then take a 3 hour nap and work again from 11am Sunday to 7am Monday. No way in hell. A person can't work like that and not make any mistakes due to sleep deprevation. Two 18 hour shifts with a 3 hour nap in between? I told her I wasn't comfortable with that schedule. She pretty much told me that I need to take it or leave it. I also told this lady what kind of problems I had in the past. Such as him getting the cows milk, laying in soiled clothes all night, having the tube left open so all of his food went into his bed instead of his belly...she told me that there is "give and take". Like that was acceptable. She made me feel like I was being picky. I told her that when things like that happen and they harm, hurt or make my child uncomfortable it is not acceptable and I wasn't going to tolerate it any longer. She pissed me off! So I called the state dept the next morning and told her what happened. She said that she was working on getting some other companys to cover me. We found another one and they came to meet me at the hospital yesterday. I gave them some of Kevin's background. I said that he was home for almost 4 months until he started to get sick in August. The owner of the company said, "You took care of him during the day alone?" I said that I did. She said, "Oh, that's probably why he got sick." WHAT?? I was offended. I said, "Excuse me? I take VERY good care of my son and that had absolutely NOTHING to do with him getting sick." I told her that I didn't appreciate her comment. She said, "Oh no! You must have misunderstood me!" Then she tried to dig herself out of a hole. Other than that - they seemed fine. They could cover Kevin for the times I want with RNs. And they have 2 nurses for the weekend instead of having 1 person do it. So, we'll see how it goes. I just got a phone call that they will start tonight so Kevin is coming home TODAY!! Yipee! It will be a pain to get all of these new people used to Kevin and us to get used to them. I hope we don't get any "duds". I told Chris that I just want Kevin to get better and be normal so we can get these people out of our house and not have to worry about it anymore. It's stressful going though all this already - but to add nursing problems into it just makes it that much worse.

Well, I have to go jump in the shower and get ready to go! I don't think I will be able to update until sometime tomorrow because tonight will be hectic. We have to learn how to use the IV equipment and get him up and running on that. It's always chaos his first day home. But we ease back into it easily. Take care!

Monday, November 29, 2004 7:02 PM

Kevin had such a good day today! That boy needs to come home! But not until I get help at home first.

I found out today that the nursing company wasn't returning the woman from the State Dept's phone calls either. I spoke to her today and she said that Wednesday they told her they would get me the help I needed. Then they ignored her calls on Friday. She got a hold of someone there today and they told her that they don't have RN's. She was annoyed. She said, "Why didn't you tell me that on Wednesday so I could work it out another way?" Now other people are getting to see what a pain the nursing can be. She told me this afternoon that she found another company for me and they would be calling me tonight. I haven't heard from them yet. So if they can get me all set up then Kevin could be home maybe Wednesday. We'll see.

He's doing well with his throwing up. But he's always had some good days and bad days with that. At least he didn't pull that damn tube out again today. He's getting too old to have it. It's not a long term thing - but he's had it long term. They should have given him a G tube which goes into his side instead of through his nose. He's getting to good with his hands and can pull it out too easily now.

Oh boy - here comes Gracie. I gotta go.....

ikllfffffffjfjjfeefjkkffjkfkjfkfkjrglegfgsjkigig iutyituiuiiiiiiiiiiiiiiiiiiiiiliikiilpiiiiiiii (Gracie says Hi!)

Monday, November 29, 2004 8:20 AM

I hope everyone had a great weekend. Kevin did really well. He was laughing and smiling yesterday. His laugh is just a "Hee". But it's better than nothing. When he laughs he throws his head back and sticks his tongue out. Every time. He's so darn cute!! His sats were about the same over the weekend - but they got better while he was sleeping. They went back up into the low 90's. I don't know what the heck is going on. But he needs to stop getting lower or I'll have to take away another one of his cars. (He's down to 14 cars now.)

Still no nursing. They haven't contacted me. I think that's kinda crappy communication on their part. They could at least call me to let me know they didn't find anyone yet. So I don't think Kevin will be home today. I think he will need to go on the wait list for Mt. Washington. I was told there are 4 kids at JHH that are on the list already. So maybe by the time I get nursing coverage he will still be at JHH waiting and won't go to Mt. Washington at all. I had a dream about that place last night. They were taking him for a chest x-ray at 4am and they put a breathing tube down his throat and he was fighting it. But the problem was - he was absolutely fine. They didn't need to do that to him. Then I woke myself up and realized it was a dream. I sure hope he comes home soon.

The cardiologist over the weekend said that he will be on the antibiotics until 12/30. Then the PICC line will stay in for several more days in case he gets sick and needs the line. He is being treated for Endocarditis even though they don't have solid evidence that's what it is. But they want to treat him because there were some results that say this "could" be it. Chris and I understand. Hopefully this will knock out whatever is ailing him. Now we have to pray that he doesn't get a fungal infection from having an IV line in for so long. If it's not one thing - it's another.

Well, I'm gonna get moving and get to the hospital. Bye!

Friday, November 26, 2004 5:09 PM

We hope everyone had a wonderful Thanksgiving yesterday. We did. Chris and I went to the hospital in the morning and came home for dinner at Mom's house with the rest of our family. Kevin has been having some pretty good days. We were told that they changed his IV medications again. So now the 6 week course of antibiotics has been extended since they are starting them from Wednesday (when they switched the meds again.) I also haven't heard anything about nursing care. So we aren't sure if he will be home on Monday or not. We called the nursing company today and there was no answer. I have no idea what's going on and I hate that. I like everything to be in place. But it's out of my hands.

Kevin's sats are also still lower than his usual. He was in the low 80's today and only 87 or so when he was asleep. They even dipped into the 70's today. I don't know what's going on. Hopefully that will pass. I don't know if that's likely or not - but I can hope. They mentioned something about an ECHO - but that hasn't been done nor has it been written for in his chart. Maybe they'll get it straight this weekend.

Sorry to cut it short - but we need to go get Gracie. Have a great weekend everyone!

Friday, November 26, 2004 5:09 PM

We hope everyone had a wonderful Thanksgiving yesterday. We did. Chris and I went to the hospital in the morning and came home for dinner at Mom's house with the rest of our family. Kevin has been having some pretty good days. We were told that they changed his IV medications again. So now the 6 week course of antibiotics has been extended since they are starting them from Wednesday (when they switched the meds again.) I also haven't heard anything about nursing care. So we aren't sure if he will be home on Monday or not. We called the nursing company today and there was no answer. I have no idea what's going on and I hate that. I like everything to be in place. But it's out of my hands.

Kevin's sats are also still lower than his usual. He was in the low 80's today and only 87 or so when he was asleep. They even dipped into the 70's today. I don't know what's going on. Hopefully that will pass. I don't know if that's likely or not - but I can hope. They mentioned something about an ECHO - but that hasn't been done nor has it been written for in his chart. Maybe they'll get it straight this weekend.

Sorry to cut it short - but we need to go get Gracie. Have a great weekend everyone!

Tuesday, November 23, 2004 3:26 PM

Kevin won't be coming home tomorrow. I was told maybe Friday, but probably Monday. They said that I can't provide Kevin with the level of care that he needs. The state dept rep is working to get 18 hours of nursing time approved for us. That would be 9pm to 3pm the next day. They also said since Kevin will be on IV antibiotics that he can't have an LPN, he must have RNs assigned to his case. That seems to be even harder to get. So, they won't let him come home until we have that in place. The hospital and the state dept said that if I don't have nursing in place, then Kevin will probably have to go to Mt. Washington. That would be until we can find nurses to care for him at home. They wrote in his chart at the hospital that it would be "unsafe" for Kevin to come home at this time. He is on 17 medications now and 2 IV antibiotics that he gets 4 times a day each. I could do it. I'd just be very tired. I'm a little confused right now. I don't know what is going to happen. I hear that he is doing really well at the hospital and is feeling great. I want him home when he feels well. But I have to do what is best for Kevin. I guess we'll just have to pray that we get the nursing coverage that we need (and they aren't idiots) and he can come home. We should know by tomorrow if he will be coming home on Friday or Monday. I'll let you all know as soon as I find out.

Monday, November 22, 2004 1:22 PM

Kevin had a really good weekend. He was asleep when we arrived yesterday - so I woke him up. He was in his Raven's outfit. But it wasn't too long before he threw up in it and had to be changed. After he woke up he was playing and smiling. He's pretty much back to himself now. He slept while Chris and I ate lunch and after lunch I woke him back up so he would sleep when we had to leave for the day. We played alot. Nothing too exciting. His poopy is just about back to normal also. The food is what was causing the diarrhea. (and gas!)

I felt OK yesterday after my day of rest - but I felt horrible again this morning. So I stayed at home. When I called to check on him the nurse said he was perfect. Smiling and cooing. Just being an all around good boy. She said that when he started smiling she went to get other nurses so they could see. He doesn't smile too much in the first place. So he hardly ever smiles at the hospital because he's sick. It's a rare thing for the nurses to see.

I was called by the cardiology nurse a couple of hours ago and the doctors want Kevin home on Wednesday. We have to get the IV therapy stuff worked out so that process has been started on their end. They said they could arrange it for Wednesday here at home. I prefer tomorrow at the hospital. I don't want to bring him home and have them not show up and he misses his dose. Things happen. So I'm going to try to not let those opportunities come up.

The state lady also called. We spoke about the quality of care and my worries about going back to work in January. I'm a nervous wreck about that. I just don't trust these nurses. Maybe God will send me a great one. She was also telling me that I could have a nurse until 5pm, but they would start at 11pm the night before. There will be two nurses with 2 shifts. I said that I'd prefer they start by 9pm and leave by 2:30pm or whenever my ours are up. I don't know how many hours the state will give me for each day. Nina said she would bring Gracie home early and watch Kevin and Gracie until I got home from work. Hopefully around 4pm. I'm still worried. I want someone who will interact with Kevin. I don't want some lazy person that won't play with him. I also need someone that has patience for him. And someone that I won't have to worry about over medicating him or taking his meds for themselves. (Morphine and methadone.) I need to stop obsessing. If I get a crappy nurse - I'll just get rid of her and move on to another one. Unfortunately - the pool of nurses isn't so great. This is just depressing me - I need to stop.

I'm going to go rest up for a little bit. I'll let you all know how the progress is tomorrow with my training!

Saturday, November 20, 2004 9:40 AM

Kevin was feeling much better yesterday. But he still has diarrhea from the formula. He got switched back to Pregestimil yesterday afternoon. Once his poopy gets back to normal, we will start to wean him off slowly by mixing in the new formula a little at a time. (They finally listened to me.) He's back to playing and grabbing things. Yesterday we sat in the chair and took all of his balloons and put them around our heads. We were surrounded by all kinds of colors. He liked it. Then I turned one around and it was like a mirror. He would look at himself, then look at me, then himself....then an ID doctor came up and moved the balloon out of the way so he could talk to us. He said, "Anybody in there?" He said they weren't sure how they were going to treat Kevin yet. But they are working on it. Then later on a cardiologist came by. Her rotation started yesterday. (So we are starting over again with new doctors.) She said they are going to take Kevin off the new antibiotics and put him back on what he had been on for the last week and a half. I didn't understand why. She tried to explain it to me. It didn't make sense. Why put him back on it when it obviously isn't strong enough because he got sick on it. We just kept arguing back and forth. She was getting frustrated with me. I don't care. I was frustrated with her too. I think it's a stupid idea. I figured I would just wait and talk to the ID people myself today. I received a phone call last night from the doctors at 10pm. They said they heard that I was not happy with the decision. I told them I wasn't and why. They said that the ID doctors agreed with me and they weren't going to put him back on the other antibiotic. They were going to decrease one he is currently getting and replace another with penicillin. She said Kevin will be treated for an infection in his blood and it will be for several weeks. He can come home and I will do it here. That's fine - but the PICC line he has in isn't going to work for me that long. It's partially out of his forearm and goes up to his upper arm. It constantly kinks when he moves and the alarms go off. They need to figure something out with that. Maybe give him another line in his chest. I don't know. I don't want him to be uncomfortable. Either way - he will be. I have to think about this one.

Chris went solo to the hospital today. I felt like I'd been hit by a truck when I woke up this morning. I have a cold and it's just getting worse since I'm not resting. Gracie is at Gan and Pop's so I'll have some quiet time. But I'm doing laundry and I have to cut up a bunch of chicken I bought and get the living room cleaned up. I also need to clean the bird cages and the bathrooms. I should be able to sit down for 10 minutes before it's time for Gracie to come back home. Well - I'm going to get moving so I can get some things done around here. I'll keep you all posted on our decision about his PICC line. Take care!

Friday, November 19, 2004 9:49 AM

Kevin was pretty unhappy when I arrived yesterday morning. And he just got worse and worse. It was a really crappy day for him. His fever kept getting higher and higher and he couldn't rest. Sound familiar? It's the same thing that he was admitted for 7 times since the beginning of August. But this time it happened while he was in the hospital. I'm glad it did because I was starting to wonder if it was something in our house making him sick. Problem with yesterday was that Kevin isn't on the GI service, he's on Cardiology now and they aren't familiar with Kevin's situation. It was a long day having Kevin crying from 10am to 6pm and them not doing a damn thing to help him. I said that if Kevin was at home and admitted to the ER he would have been hooked up to the antibiotics he needed and gotten something to help him rest (morphine). It was ridiculous that he was already in the hospital and it was taking them that long to get things situated. The cardiology doctor wouldn't give him morphine. She gave him Benadryl. Of course that didn't do a damn thing. Then she said she would try something else, but she found out that Kevin couldn't have it because he is also on aspirin and the two couldn't be taken at the same time. Finally they ordered the correct antibiotics and started Kevin on them. His fever broke within 20 minutes of starting them. And he rested. It wasn't a really sound sleep - but it was better than nothing. I wasn't going to leave him yesterday until I knew he was getting what he needed and was comfortable. I left there a little after 6pm and got home at 7:30pm. Kevin had a good night last night - probably because he was exhausted. He had diarrhea, he only peed twice while I was there yesterday, he was throwing up, fever of 103 and was miserable. They had changed his formula the other day - I think that's what's giving him the diarrhea. Gee - that really won't help with him getting dehydrated will it? I asked that they wean him onto the new formula. They won't. What they are doing is just diluting it with some water to make it less calories. Honestly I hope that works. But if it doesn't (and I don't think it will) - I will force them to try my way. It can't hurt. I've been right in the past.

Its hard dealing with new doctors since Kevin has switched to cardiology. I was getting very upset yesterday when they wouldn't do anything to help Kevin with his comfortability. She said that she didn't think it was a "pain" issue. Maybe not. But try it once and if it doesn't work, don't give it again. Keyword was TRY. She didn't. She said she didn't want to "mask" the problem for when the ID doctors came by to look at Kevin. If the benadryl worked to put him to sleep wouldn't that be "masking" the problem also? Sleep is sleep - I don't care how he got it - I just wanted him to get some. Luckily the antibiotics worked and helped. She also tried to tell me that Kevin was going through withdrawl and it wasn't an infection. I got her off of that subject in less then 2 minutes. It was ridiculous. Read his chart lady - get some background info on this kid before you come up with stupid ideas. (I seem to still be a little bit hostile from last night...) Deep sigh....cleansing breath....

I'm going to leave for the hospital now. I don't know how long they are going to keep Kevin on these new antibiotics. But the ID doctor understands that Kevin does have an infection that just isn't showing up on their radar. It's obvious that he's sick. They have him on stronger antibiotics than they gave him in the past. He understands that the way Kevin has been treated for this hasn't worked and they need to try something else. I'm sorry it took 8 times before they figured that out.

I better get going. I'll let you all know what happens today.

Wednesday, November 17, 2004 8:08 PM

Kevin did OK today. He started his new formula. But he's still throwing up. When I called to check on him this morning the nurse said something about him coming home today or tomorrow. Of course I couldn't do it today. But I could deal with tomorrow. But I don't have any of the IV equipment or training to do it. When I arrived the cardiology nurse came to see me. She said that Kevin wasn't going to come home until his antibiotics were completed. She said I needed to rest right now and get ready for when he came home in a week. His last day should be the 25th, Thanksgiving. I don't know if he gets the antibiotics through the 25th and comes home on the 26th or stops on the 25th and comes home that day. I'll find out tomorrow. She said that she has reasons for Kevin to stay that should appease the insurance company.

I asked the doctor to cut down just a smidge on Kevin's methadone dose. I want to start to wean him off of it slowly. He no longer gets morphine so he should be able to come off the methadone. I also asked her about Kevin's throwing up. She is a cardiologist but she can at least look in to it for me. I said that Kevin has never been able to hold down much food and the issue has never been looked in to. The 2 week old baby in Kevin's room even eats more than Kevin in one feeding. I explained Kevin couldn't have a bottle in the past because he burned up too many calories trying to eat and he got worn out. But since his heart has been fixed - he should be able to take a bottle. A kid his size should be taking an 8 ounce bottle - but he can only take a little more than one ounce an hour. She said she would check with GI about it. If this is something that can be corrected - I would love to get him off that NG tube. We'll see what happens with that...

The cath doctor also came in. He said that every time he comes in to check on Kevin the sats just get higher and higher. He said that is a good sign that the pressure in the right side of his heart is decreasing as time goes by. Hopefully his pulmonary arteries will grow more now that the new conduit is in place. If that happens, he won't need to stint or stretch them out. He said they will keep track of Kevin's progress with ECHO's and cardiac caths. Kevin's sats are higher when he sleeps, but I saw him get up to 97 today. Ninety three had been the highest so far. He said that hopefully the hole in Kevin's heart won't need to be repaired yet and Kevin can have his liver transplant first. But nobody knows when the transplant would be. We'll just have to see how he does. One day at a time...

I have to go back to work in 6 weeks. I would really like for some of Kevin's issues to be resolved before I go back. But we'll just have to wait and see. But I have to go back. It's been too long as it is. I will adjust. (Did I spell that right?) Ah well, you know what I'm trying to say. What I need to do is win the lottery. But that's hard to do. My chances are even worse because I don't play! Maybe I'll start.

Check you all later!! It's tubby time!!

Wednesday, November 17, 2004 9:11 AM

I couldn't go to see Kevin yesterday. I have a cold. That's one thing he doesn't need right now. I was told he slept alot yesterday. So when I called to check on him at 6:30am, I was told that he was awake most of the night. I think he's getting a little mixed up. I was also told that the insurance company is starting to ask questions as to why he is still in the hospital. I will be going in today to learn about the IV infusion pump and get ready to bring him home. He might be home as early as tomorrow. If insurance won't pay, we don't have a choice. I'm sure it won't be hard to learn and everything will be fine.

They also told me that they will be switching his fomula. It's for children over the age of 1. I mentioned that he is over one, but he is still the size of a 7 month old. They said it was OK. This new formula would be better for him. More calories (30) and more vitamins. And it would be easier for him to digest. So he will only need to be at 42 cc's per hour for now on this new formula. Plus it's already made. Right now I have to make his formula each day to last 24 hours worth. I also have to boil his water for the formula. This sounds like it will be easier on both of us.

I will be wearing a mask today to help me not give Kevin any germs. And I will do my best to keep him awake alot today. We need to get him back on track with his sleeping habits. He also had been doing well with his throwing up - but the nurse told me this morning that he was throwing up alot last night. His new formula starts today - hopefully that will make a difference. Gotta run! Take care!

Monday, November 15, 2004 8:42 PM

Kevin is doing so much better. He seems to be getting back to his old self again. The hospital called me this morning and told me that they wanted to take Kevin into the OR for his PICC line early because they had some cancelations. So I wasn't able to be there when he went in. I arrived at the hospital about 10 minutes after he arrived in the recovery room. He had the line in and they said it took some time. The poor kid has black and blue marks on the side and behind his knees with about 10 needle marks there. They eventually got it into his upper right arm. I asked the doctors to write orders for rteries will grow more now that the new conduit is in place. If that happens, he won't need to stint or stretch them out. He said they will keep track of Kevin's progress with ECHO's and cardiac caths. Kevin's sats are higher when he sleeps, but I saw him get up to 97 today. Ninety three had been the highest so far. He said that hopefully the hole in Kevin's heart won't need to be repaired yet and Kevin can have his liver transplant first. But nobody knows when the transplant would be. We'll just have to see how he does. One day at a time...

I have to go back to work in 6 weeks. I would really like for some of Kevin's issues to be resolved before I go back. But we'll just have to wait and see. But I have to go back. It's been too long as it is. I will adjust. (Did I spell that right?) Ah well, you know what I'm trying to say. What I need to do is win the lottery. But that's hard to do. My chances are even worse because I don't play! Maybe I'll start.

Check you all later!! It's tubby time!!

Wednesday, November 17, 2004 9:11 AM

I couldn't go to see Kevin yesterday. I have a cold. That's one thing he doesn't need right now. I was told he slept alot yesterday. So when I called to check on him at 6:30am, I was told that he was awake most of the night. I think he's getting a little mixed up. I was also told that the insurance company is starting to ask questions as to why he is still in the hospital. I will be going in today to learn about the IV infusion pump and get ready to bring him home. He might be home as early as tomorrow. If insurance won't pay, we don't have a choice. I'm sure it won't be hard to learn and everything will be fine.

They also told me that they will be switching his fomula. It's for children over the age of 1. I mentioned that he is over one, but he is still the size of a 7 month old. They said it was OK. This new formula would be better for him. More calories (30) and more vitamins. And it would be easier for him to digest. So he will only need to be at 42 cc's per hour for now on this new formula. Plus it's already made. Right now I have to make his formula each day to last 24 hours worth. I also have to boil his water for the formula. This sounds like it will be easier on both of us.

I will be wearing a mask today to help me not give Kevin any germs. And I will do my best to keep him awake alot today. We need to get him back on track with his sleeping habits. He also had been doing well with his throwing up - but the nurse told me this morning that he was throwing up alot last night. His new formula starts today - hopefully that will make a difference. Gotta run! Take care!

Monday, November 15, 2004 8:42 PM

Kevin is doing so much better. He seems to be getting back to his old self again. The hospital called me this morning and told me that they wanted to take Kevin into the OR for his PICC line early because they had some cancelations. So I wasn't able to be there when he went in. I arrived at the hospital about 10 minutes after he arrived in the recovery room. He had the line in and they said it took some time. The poor kid has black and blue marks on the side and behind his knees with about 10 needle marks there. They eventually got it into his upper right arm. I asked the doctors to write orders for Kevin to have Motrin if he needed it, which they did. They also told me that Kevin will need to be on antibiotics until November 25th. They said he can go to Mt. Washington rehab or go home. So I will need to learn how to do the IV antibiotics. I'm not having him go to Mt. Washington. I guess we will be bringing him home if a few days then. I'm not really comfortable with it - but I'll get over it.

Kevin was awake for a little while after he got back into his old room. Then he slept for about 3 hours. He woke up because he had a wet diaper. A REALLY wet diaper. It leaked out into his bed. Then he stayed awake. That was about 3pm and I have to leave by 3:30pm to get Gracie on time. So we cuddled for half an hour. His new thing is licking mommy's face. I had him on my shoulder and he looked at me. I was looking at him and saw his tongue come out and he tried to eat me! I figured he was thirsty. So I gave him a drink. A few minutes later he grabbed me by the chin and pulled me closer to him and licked my cheek. It was pretty funny. He gets all cross-eyed when he does it. He also smiled for me today. That's the first time in 2 weeks. He's so sweet.

I have to run. I told Gracie I was making her lunch and then I would lay with her while she watches Ariel the Mermaid. (Yuck. I've had enough of Ariel. I'm starting to miss Belle from Beauty and the Beast. I never thought I would get to that point!) Take care everybody!!

Sunday, November 14, 2004 9:21 PM

Kevin is finally starting to feel better. Starting today he isn't quite as whiny. He will sit on your lap and watch Baby Einstein or play with his toys. His antibiotics have changed for a 3rd time. He will be getting a central PICC line tomorrow in the OR. It shouldn't be anything major for him. It's not the same as the central line he had before his heart surgery. This one goes into his arm or leg and gets threaded up really close to his heart. The veins near the heart are larger and won't (shouldn't) infiltrate. The other PICC lines he had in the past (last winter) were only midline. They were just like a regular IV but that went up into his shoulder and stopped there. They infiltrate just as easy as a regular IV. We'll just keep our fingers crossed on this. He is going to be on antibiotics for 2 weeks. Today was his 5th day. They are talking about Kevin coming home on the IV antibiotics. We have some things to work out on that. I'm not going to let one of our home nurses take care of that. No way in hell. I'll have to be taught so I can do it myself. He needs them every 6 hours.

They are also talking about Kevin's next cath. Maybe in 3-4 weeks. His sats are doing really well. Sometime we see him get into the low 90's when he is asleep. And he is in the 80's when he's awake. The weekend cardiologist came by yesterday and today to take a look at him. It was Dr. Spevack. Yes, the one who wouldn't help me some time ago and told me over and over that Kevin was going to die. That guy. It went fine. I didn't hurt him or anything. We were all professional. (But I still think he was a butthead.)

I'm sure many other things happened since Friday - but I wasn't taking notes like I usually do and I know I've forgotten some things. I'll write them down when I remember.

We also took Gracie to the hospital today. Just for a couple of hours. Then we left Kevin early and went to the Aquarium. She had a really good time. But she hadn't had a nap and got quite bitchy. But she liked it so much she screamed when we left. Chris was very patient with her - I wanted to leave her there and hoped someone nice would take her home with them. (Just kidding.) But she did get pretty obnoxious. She liked the dolphin show too. That was exciting for her.

Well, I need to go grab some sleep. Chris and I didn't sleep well last night and we had a long day. I'll let you know how he does in the OR with getting his new line. (I was told that Dr. Lau will be on standby just in case they can't get it to work and Kevin will get the central line put in again like the one before his heart surgery that goes in his neck and comes out his chest.) But we pray that won't have to happen. Take care everyone!!

Friday, November 12, 2004 9:26 AM

Kevin had a wonderful birthday yesterday! He was still not feeling up to his old self and was cranky most of the day - but his party went well.

When I arrived yesterday morning his crib was decorated and he was sleeping. The doctors told me that Kevin would be in the hospital for at least 7 days. One of his blood cultures had come back positive. They think that maybe the conduit that was put in his heart has developed a bacterial infection. They have also re-drawn the blood cultures to double check to make sure the positive culture wasn't contaminated. He will have blood cultures drawn every other day. He also had to have blood drawn a few times yesterday. It sure was nice when he had that central line and didn't have to get stuck so darn much. They said his white blood cell count was coming down. His was 21,000. The normal is 4-5,000. A person is admitted to the hospital when it reaches 15,000. Kevin's is down to 9,000 now. So the antibiotics are working - but he's still so cranky. I asked the doctor yesterday about writing for morphine just in case. If it didn't work, then he wouldn't get anymore. He said, "He seems to be OK now so next time he gets cranky they can call me." He'd been cranky for the entire 4 hours before the guy got there and had just fallen asleep. Two minutes after he left, Kevin was up and crying again. I went looking for the doctor but I couldn't find him. I spoke to the nurse and the doctor had actually written for the morphine in Kevin's chart. But Kevin had settled back down and he didn't get any. Kevin had also been throwing up ALOT. I kept shutting his feeds off. But he needs his nutrition. So I just reduced his rate to 35. The doctor told me that they would put him back up to 44 in a couple of hours. I said, "Why? Just so he can start throwing up again?" He was doing much better at the lower rate. I asked him to see about increasing the calories in his food and keeping him at a lower rate so he would be getting the same calories as at the higher rate. They said they would. He is on 28 calories per ounce now. He did well last night and didn't throw up at all. But when I called this morning he was throwing up again. I don't know what the problem is. I gave it a shot as to what I thought would help him. I'll just keep an eye on him today and see if he throws up less than yesterday. Hopefully this is something that he will grow out of as he gets older and isn't a medical issue.

He fell asleep about 2 something. A little before 3pm about 30 people walked into his room and they wanted to sing to him. So I woke him up and he was crying. As soon as I turned him around and he saw all those people he stopped crying. He just stared at everyone like, "What are you all doing here?" They sang to him and it was great. Chris got off work early and arrived at 12:30 so he was there to catch it on video. Most of the people left after they sang and we let Kevin get into his cake they provided. He put his hand in it a few times and rubbed it on his legs, got it in his hair, behind his ear and mashed it into the tape on his face that holds his NG tube in place. He got fussy a few times but then got his hand near his mouth but not quite there. AnnaRuth put his hand at his mouth - all of the sudden you see this little tongue darting in and out between his fingers. He enjoyed it. We got lots of pictures that I will drop off today for development. We'll get them up in about a week hopefully. He got lots of presents. The GI case manager had given him a leapfrog that sings and he loves that. She also brought in a party hat for him that was adorable. We got pics of him in that too. He got a birthday Ty bear from GI nurse MaryKay, a Tigger toy that does many things and a lights and sounds Sesame Street toy from our friend Judy, a kick-n-play lights and sounds thing-a-ma-jig from his 3 favorite ladies at the hospital (Julia, Catherine and AnnaRuth), a Baby Einstein video, Ty giraffe and a musical toy from the Child Life Specialist, Onsie outfits from his Uncle Tim, Aunt Patty and family and he got a delivery of many balloons attached to a bag with a teddy bear in it from Traci and Jimmy. So many balloons! When you took the teddy out of the bag the balloons made the bag float away. He also got a Baby Einstein from Nina. Thank God - I'm getting pretty sick of the ones we have. I know what music plays with every scene. I've been watching them for almost a year now. A change will be good. Chris and I had cookies made for us for our anniversary (thank you Maryl and Tammy and Maryl's hubby). And I received Godiva chocolates from Barb just for me! I have never had Godiva before. I looked at the box and it's truffles. I've never had those either. I thought truffles were mushrooms found in the woods, but someone told me there are also chocolate truffles. I'm glad - I didn't think a mushroom dipped in chocolate would be all that wonderful tasting. I haven't opened them yet - I need to save them for when I'm relaxing in a hot tub (with no 1 or 2 year olds in it with me.) It can happen one day! Chris and I also went out to dinner last night and Chris' mom paid. She gave us a gift certificate to Outback (which is where I wanted to go!) Out portion of that bill was a whole $1.45! I wish we could eat out for that price all the time! Thanks Mom,we had a good time together. I think that was it - I hope I didn't miss anything.

We all had a great day. The hospital family took really good care of Kevin and us yesterday. We are very grateful for every one of them. It was hard having him in there for this milestone - but they made it easier for us. Thank you all for your notes to Kevin. Chris and I love to read the enteries each day. It's uplifting for us. I better get moving. Time to go see that one year old baby!! Take care everyone!

Wednesday, November 10, 2004 6:42 PM

Kevin's admission to the hospital went OK. It wasn't as bad as others because Kevin wasn't so sick this time. They tried 3 times for an IV with no luck. We asked that they get someone from the NICU to try. He was admitted to his room about 9:30pm and his IV hadn't been done by the time we left. When we called this morning at 5am we were told it was in and it had only taken one try. They said he slept all night. That was probably because he was so darn tired. We had a little run in with a doctor in the ER over giving Kevin a urine cath. We said no. Like the past 3 or 4 times, I have had him "bagged" first. Their argument is always that bagged urine has to pass through his penis first and could pick up bacteria from the outside rather than the inside which is what they want to check. We argue that if that culture were to come back positive, then they could cath him to check in his bladder. But if it was negative - there was no reason to cath him. Then it would be negative inside too. She kept pushing and I was getting irritated. So was Chris. We stood firm - and he was bagged. I told her that she hadn't had to sit there and listen to him cry while they try to stick a tube up his penis for 20 minutes. She asked if she could try once. NO!! By the time we got to his room the results were in - negative. Ya know - I feel bad for the parents who are new at this and think they have to do whatever the doctors say. I remember when Kevin was first admitted to JHH in January and they were putting a PICC line in him. They wouldn't let us be with him. Why not? It is better for Kevin to have his parents there with him so we can soothe him. But I was fairly new at this hospital game and I didn't know I had a choice. In the ER we had taken our medications with us for Kevin. We always have. It takes them too long to get them ordered and he would get them late. They told us that we couldn't do it. Sure, OK....so I gave him his 4pm and 5pm meds. I just told them not to write it down in their papers. I wasn't going to keep him from getting things he needed like Methadone or Lasix. I'm getting good at dealing with these hospital people - I just don't listen to them if I don't want to. At least not when Kevin's best interest is at hand.

Kevin's doctors came by today and I asked what antibiotics he was on and what they were treating. They said they are treating for a wound infection. I said, "Have you seen his wound? It doesn't look infected." They hadn't even seen it. So I layed him down and they looked at it. Then they buttoned him up and looked at me. I said, "So, does it look infected to you?" They shook their heads no. They said he could have an infection under the incision site. Fine. They said he could have fluid around his heart and an ECHO would show that. Fine. Do whatever - just figure it out and get him on the right meds that he needs. I don't want them treating him blindly and have him get sick again after he comes home. He had the ECHO while I was there today. I don't know the results. But for now he is being treated for a wound infection.

Our little boy will be ONE YEAR OLD tomorrow! How exciting! Nobody ever thought he would get this far. I'm sad that he won't be home - but the Child Life Specialists said they would throw him a little party there in his room. Chris will try to get off work a little early so he can come by to see him. I hope he has a great day tomorrow. I'll take pictures and let you all know how it goes! And thanks for all the cards we have gotten for Kevin. He got his first one on Tuesday and I opened it for him. He had a ball with it. I never knew how much a kid would enjoy a birthday card. I wish I caught it on video - he kept holding it and looking at it all wide-eyed. Then he tried to eat it. He's such a cutie pie.

I have to go cook dinner - Gracie's starvin'!

Tuesday, November 9, 2004 12:32 PM

The hospital just called with Kevin's blood test results. He has to go back to the hospital. The nurse said the results were very concerning and Dr. Vricella wanted him admitted. His white blood cell count was extremely high. He will need to go back on IV antibiotics. We don't know for how long. I am SO disappointed. I cried and still am crying. My baby is going to have to be in the hospital for his 1st birthday. Hooked up to machines and tubes. Uncomfortable. I just hate this. I'm kinda angry. But this will make him feel better in the long run. I have to go. I need to pack his things and get ready to leave....

Tuesday, November 9, 2004 7:31 AM

Kevin still isn't doing so great. Nina went with me yesterday to have his wound checked. The nurse took a culture of it. She called Dr. Vricella and explained it to him and he wanted to come and see it. But he was in the OR for 45 more minutes. The clinic was closed that day so I went and grabbed lunch and brought it back. He slept while we ate in the examining room. She said Dr. Vricella was on his way. But he didn't come. Then she paged him again and he said he was coming. I don't know how long it took. I wasn't paying attention to the clock. He came and examined Kevin and kept squeezing the top of his wound. It grossed me out. He said it looked OK and for me to keep a bandage on it and change it about 5 times a day. Or more if it gets saturated. He said if it turned pussy then we needed to do more. We explained about the crying and fussiness and nobody had any answers. They got blood from him to check all his levels to see if they can find something that way. Hopefully they can so we will know how to treat Kevin. He is so miserable. But still no fevers. They will call me today with the results.

Kevin's nurse got here 30 minutes late last night. I was tired. He was asleep when she arrived so I went over a few things and then went to bed. She came to my room at 1am telling me that he was constantly throwing up since 10:30pm. I came down and changed his food over to Pedialyte and changed the rate to 30 cc's per hour. He's still on that and doing better. I will slowly start to introduce formula again in the morning. He needs to have those calories. I will also tell the nurse when she calls. I don't want him in the hospital right now. He would just throw up there too. We can handle him here for now. He goes back on Friday to have his wound checked again and for a GI appt. I will let GI know then - unless he gets too bad before then. But lets pray that doesn't happen and he will get better. I want that little boy to be home for his birthday - not in a hospital. I'll keep you all posted on how he's doing. I'll probably write again in the morning. Bye.

Oh, one more thing...Dr. Vricella said that Kevin will be getting his cath in about one month. He doesn't want to wait 2 months because he wants to get him ready and healed before he goes for a liver transplant. So, we'll see....

Monday, November 8, 2004 8:08 AM

I have to be really quick...

Kevin is still the same. We have no idea what is wrong with him. He's throwing up alot too. The new nurse was good with him - but she didn't show up until 11:30pm both nights she was here. That's too late for me.

Nina came this morning and was helping with Kevin and noticed that his incision from his heart leaked all over the front of his clothes. It had been doing really good - but it looks a little pussy at the part that is open at the top. I called the cardiac nurse and she wants to see him today. They want to take blood to see if he has an infection. I will leave at 10:30am. Nina is going with me and Gracie will go to Gan's. I hope they can figure out what is wrong with him. It's so hard having him like this. But he hasn't had any fevers though - that's good.

I need to run. I'll tell you what they say as soon as I get a chance!

Saturday, November 6, 2004 5:29 PM

Kevin's night was better last night - but he's still not himself. I called Hospice today to see if they could send someone out to check him. The nurse last night said he cried every time he pooped and maybe his tummy was bothering him. I hadn't noticed that. During the day he whined almost constantly. I went and bought a new underarm thermometer. The ear one just wasn't accurate enough. I took his temp 3 times in a row in the same ear and I got 3 different readings. His fever has stayed normal last night and today. The hospice people called me back and told me that they couldn't send someone out. But she said she thought it was because of the flu shot and he was having flu symptoms. I said that he shot was on Wednesday. She said it could last up to 5 days. I sure hope she's right and this will pass. But I just checked the internet and it said that the flu-like symptoms only last a day or two. But Kevin is different. I want him to get feeling better - it's horrible to have him like this. But no fever is a good thing. Hospice told me to put him on Advil around the clock until Sunday night. We'll see if it helps. I have morphine also, but I don't want him to have much of that. I gave it to him once today and once yesterday.

We should have a new nurse coming tonight - but I haven't heard from her. Usually they call to introduce themselves and get directions. She won't be here until 11pm and they have orientation. It's going to be a long night. But I got to take a nap with Gracie so I should be OK. I hope this nurse doesn't suck like some others we've had.

Here comes Gracie...gotta go.

Friday, November 5, 2004 2:16 PM

We're all hanging in there. Kevin had a little fever this morning (100.5) and again early this afternoon. But both subsided with Advil. He's still having periods of fussiness that you can't really console. I gave him morphine once today and it seemed to calm him just a bit. His night last night was better than Wednesday night, but it still wasn't a great night for him. The cardiology nurse called to check on him today and I told her what was going on. She asked if I wanted to bring him back. I told her not just yet...we'll see how he does over the next couple of days. I have a feeling it will be a long weekend. Chris is working on Saturday and we have a new nurse on Saturday and Sunday. She can't come until 11pm - and then I have to orient her which takes an hour. I'm going to be tired.

Let me tell you a little about Kevin's discharge on Wednesday. It took so long because we had to wait for the pharmacy to make his flu vaccine. He also got the Synagis shot to keep him from getting RSV. He will get that shot once a month through March. (I'm hoping that his mood is being cause from the flu shot and will go away soon.) He will get his other 1/2 of the flu shot at the doctors office. They told me today that he could get it there. That's one thing off of my mind, because we couldn't get the 2nd half at JHH. Where was I....oh, discharge...2 of Kevin's ladies were working that day, but the other came in to say goodbye to him. He got his picture taken with them. I hope he attracts nice girls like that when he's dating age. He also had to get his stiches removed before we left. The 3 in his belly from the chest tubes, one at the top of his chest incision and one in his wrist that wasn't even holding his skin together. That one was gross. When he moved his hand the cut would open and close. They put steri-strips over everything and said he should be OK. The tippy top of the chest incision is still open a bit. It stopped leaking and is just a little pink. I think its going to be OK too. I'm keeping my eye on it. I'm also watching the boo-boo on his toe. That was purple. I've been putting cream on it and it seems to be improving.

Gracie went to the doctors today to get her flu shot. She knew why she was going and seemed to be OK with it - as long as she got a pink lollipop when it was all over. She was very well behaved in the waiting area (most of the time we were there). She asked when was her turn? And, "Is the nurse making my shot right now?" We waited an hour and got to go back. I asked her which arm she wanted it in and she picked her right arm. We rolled up her sleeve and we tried to distract her from looking but she ignored us and watched herself get the shot. She didn't make a peep. She was totally fine. She got her pink lollipop (which I dropped and shattered into 300 pieces), but Peggy replaced it with 2 which was even better. Grace started to complain about 1 minute from home. She said that her boo-boo hurt and started to whine. I had given her Tylenol before we went to the doctors. But she was also VERY tired. She had gone to bed late and got up early today. I'm sure that didn't help her attitude. There was a woman in the waiting area with her 10 month old that was complaining and said she was going to have a break-down. She was waiting for the flu shot also. She said that last month she waited for 2 hours and was crying by the time she left. I thought to myself, 'Lady, you think waiting 2 hours for a friggin shot for your healthy child is stressful you need to think again!'. People don't understand how good they have it. She said it was hard because he was so active. My kid is 2 months older than hers and he can't even sit up by himself. Which way would she rather have it? She kept going on, I just wanted her to shut up. Then she asked if I had other children. I said I did and he was sick. Peggy showed her his pictures. She said, "Oh, that must be hard." I said, "Yep." Then she got called back for her kids shot. Boy, I'm glad she hadn't broken into tears over her 1 hour wait. I would have had to slap her butt back into reality.

Nina watched Kevin for me and said that he did OK. He was asleep when I got home at 11:30am and he's still asleep now. I just pray that we get him through this weekend and beyond without any complications. He needs some home time. Where it's quiet and comfy. Mommy needs to get his weight back up too. You should see his skinny little legs!

Please pray that our little guy can overcome whatever is ailing him at this moment. We want him to get back to his old self again. I'll write when I can and let you all know how he's feeling. Take care!

Thursday, November 4, 2004 11:35 AM

I'm sorry everybody, but I've been trying for the last 30 minutes to get my computer to work so I could update his site. Now I don't have enough time to fill you in on everything! But I will say that we had a VERY long discharge last night. We got home about 6:30pm. Kevin was full of smiles too! But he started to get grumpy last night and stayed grumpy all night long. He must have only gotten a few hours of sleep. He just seemed to cry all night long. I gave him Advil (didn't work), Morphine (didn't work) and his regular Methadone dose (that didn't work either.) He stayed grumpy this morning and finally fell asleep in my arms for about 30 minutes. He's thrown up about 6 times so far this morning and has had to get his clothes changed each time. But, as of the last hour - he's been fine. I switched him over to Pedialyte for a little bit. I hope he stays feeling better. I don't want something to be wrong and have to go back.

I have to go - but I will let you all know about yesterday as soon as I can! Thanks for checking on us!

Tuesday, November 2, 2004 8:55 PM

Kevin is still doing well. I arrived this morning and Kevin was awake and his sats were at 84. He's never that high when he's awake (that didn't sound right...). I mean his sats. The OR came for him only 5 minutes after I got there. He went to the OR to get his central line removed. They were battling us over giving him a new IV. Chris and I don't understand the point if he won't be using it and he is getting discharged. We gave in. But when I was in the OR dropping off Kevin, the doctor came up and told the anesthesiologists that it was only going to take him 2 minutes and he didn't need an IV. Yeah! He didn't get an additional IV. The whole thing took 15 minutes. He went to recovery and didn't need any blow-by oxygen. He normally does after anesthesia. He was satting in the high 70's. The recovery room nurse was very rough with him when she was handling him. He just had heart surgery 1 week ago, she wasn't gentle at all. He was so hurt at one point his whole body turned red because of his crying. I got him settled down and didn't let her touch him again. We were discharged from there before an hour passed.

When Kevin was back in his room, a cardiologist came by. I have no idea who he was. He said that they are all so pleased about how well Kevin was doing after this surgery. They didn't expect him to do so well. I asked about the cath for next week. There isn't going to be one next week. He said that since Kevin's sats are in the high 70's to low 80's that they are going to wait for the cath. Maybe a couple of months. He said to take him home and get him to grow and heal. The GI team said that his liver functions were OK for now so it is OK to wait for the transplant. Kevin will go back to the Cardiology clinic in 2 weeks for a check up and to go over his medications. They changed a couple because of the changes to his heart from the surgery. He will have to follow up with a GI appt too. But I don't know when that will be.

Chris and I are worried that Kevin will end up with more fevers. That whole situation was never rectified. They still don't know the source. We would hate to have to take him back and have him go through all this again. I think that this is something related to his liver. If it keeps going on, I think they should think about a transplant sooner than later. I want it to be done when the time is best for Kevin. But I don't want him in the hospital every week like it has been since August.

I haven't heard from the nursing company. I don't know if we have coverage or not. I told Chris last night that I really don't care if they don't come. Sometimes I think I'm better off without them. They screw up way too much. It just seems to be more of a hassle than a help most of the time. I don't even want to think about it...

Well, I'm pretty tired (and it's not even 9pm!). I'm going to go watch "Ariel" with Gracie and get some rest. We have a big day tomorrow. I need to learn how to care for Kevin's incisions and all that good stuff. Oh, I also found a wound on the side of his big toe today. They left his SPO2 monitor on his foot too long in the PICU and it blistered. It's kinda deep. If it's not one thing, it's another. He'll be happy here at home. I'll let you know how it goes!!

Monday, November 1, 2004 5:24 PM

I didn't go see my little guy today. My head hurt so bad I thought I was going to throw up. Nothing was helping it. I feel much better now. I guess all of those Tylenol I was popping finally caught up. I also had a sore throat and runny nose when I woke up so I was scared I was catching a cold. But that seems to have subsided also.

Kevin is doing much better today. When I called to check on him, one of his "main squeezes" at the hospital was responsible for him today. That made me feel much better about not having been there. She told me that he wasn't as grumpy as he was yesterday. And he was VERY thirsty. He drank about 1 ounce of water at one time (from a syringe). She also tried to give him some watered down apple juice. He didn't like it. She said he made an awful face. We'll try again later. He is also getting back up to his full feeding amount. He should be back on track by this evening. His medications were also mixed up. She said that she had paged the doctors because she had about 15 questions for them. The PICU really seemed to have messed some things up. But they are getting it straight.

I received a call about 1pm today. It was Dr. Vricella's nurse coordinator. She said they will be sending Kevin home either Tuesday or Wednesday. Huh? What about the cath? They said that since his sats were OK (high 70's to low 80's) that they will wait to do the cath in a couple of weeks. That way his heart will have time to heal more. I told her that it would be better for him to come home Wednesday. Then I had to get up and start making the phone calls. I have to get nursing back into place and the meeting with the state set up. I asked the woman at the state dept to see if she could come out to JHH tomorrow or Wednesday morning and we could get a doctor there to sign the papers for her. Neither of us want to deal with Dr. Uma about this if we don't have to. She's going to see what she can do. So hopefully that can get settled.

Gracie's here now and wants to use the computer...I guess I said most of what I needed to anyways. Take care!

uihyj,sldf;lpp;lsdlhsd;li7su';d7u8u9;7 89 74r8 785 78t567yy67uuhyytfcjdrt (That was Gracie saying "Hi!")

5:45pm: The hospital called and they have Kevin in standby for tomorrow for the OR. He will be getting his central line removed from his chest. I would hate to have him get a high fever and have to get stuck for an IV, but then again, the central line is just another way for him to get an infection so it must be removed. Let's keep our fingers and toes crossed that he stays healthy before his next cath.

Sunday, October 31, 2004 8:39 PM

Kevin is doing much better. Yesterday they told us that they needed to feed Kevin, but he couldn't have an NG tube while on the BiPap machine. They wanted him to have an ND tube. We were not thrilled, to say the least. They had to talk us into it. We said that if Kevin threw up ONE TIME - it was to be removed. None of this 'let's just shove it down further' crap like before. They agreed. Luckily, they got his tube in place very quickly. They started his feeds at 2 cc's per hour. He was absolutely miserable on that BiPap machine. When he was awake he was crying and trying to get it off of his face. His throat is sore so you can hardly hear him cry.

I called to check on him last night and told the nurse that if he got to come off the BiPap, to please try to lay him on his tummy if possible. I told her that his Boppy pillow was under his crib and his "chillow". She said she would do what she could to make him comfy. I called this morning about 5am. The nurse said that he had a great night. He was off BiPap and only on blow-by oxygen. Since he was off that, his tube was pulled back and now an NG tube. His arterial line was removed from his wrist and stiched up and the line from his neck was also pulled and stiched up. And his was on his tummy just about all night long, sleeping soundly.

Chris and I got there today and he was fussy. The ND tube that was now NG was sticking out of his nose very far. He kept trying to grab it. He wasn't happy. AT ALL. I had brought my own smaller tube for him and I had her change it. That was OK, but nothing is easy there. They taped it poorly because she said the placement had to be checked by X-ray. I don't know why. So, we had to hold his arms to keep him from grabbing his new tube. The x-ray was finally done, but it took forever to get the results. Chris and I went ahead and taped the tube down properly before we got the results. We wanted it over with so we could start his feeds and get him back on his tummy. His feeds were at 4 cc's per hour. The poor kid was starving. I kept giving him water and he just couldn't get enough. I didn't want to give him too much that he would get sick. Then we were told that he would be going to the 6th floor. OK, good. Can you get the doctor to write orders to increase his food before then? What a pain it was to just get that done. They wrote for him to start at 10 an hour and go up to 28. Twenty eight? He should go to 43. They wouldn't listen. Fine - we'll take care of it on the 6th floor. Which we did. His nurse took care of getting his food orders and medications corrected. They had it all screwed up on the 7th floor - but like I said...they just wouldn't listen to us. It was very irritating.

So, Kevin is resting peacefully as of 7:30pm in his old room on the 6th floor. The ladies seemed happy to see him back. We were glad he was back too. He's frumpy when he is awake. I'm hoping it's just because he's hungry. His feeds are now up to 20 an hour. I'm sure he's in pain too. I hope he has a better day tomorrow. I want him to have some awake time where he's not crying the whole time.

Chris and I got home later than expected because we wanted to make sure Kevin was comfortable before we left. Gracie missed the Halloween parade. We got home and I quickly got her changed into her Belle dress and rushed her out the door. I figured she would just want to go to 3 or 4 houses like last year. WRONG! She kept saying, "Lets go to that house now." "One more house Mommy." We were out for over an HOUR! I asked a lady at the last house to tell her that Trick or Treat was over. She did. Gracie said, "OK. Trick or Treat is over Mommy. We have to go home now." And we did. She did really well. When people opened their doors I asked her, "What do you say Gracie?" And she would say, "Thank you." Then they gave her candy. She started to get it right toward the end of our journey.

I need to go get her into bed. (She's probably not even tired. But I am!)

I haven't heard anything about his cath. I'm sure they wanted to wait until they see how his recovery went. Hopefully we will hear soon. I'll let you know as soon as I hear anything.

Friday, October 29, 2004 6:39 PM

Kevin's hanging in there. He still looks like crud. Now he's starting to smell like crud too. His arterial line leaked so his right hand and wrist are covered with blood. So are the bandages - so he smells like stale blood. When I arrived today he was wiggley and kicking and crying. But his throat is irritated from the breathing tube so you can't hear him cry. It's very faint. I took in his "B" today and some socks. We were able to get the B in under the oxygen mask. Then they decided to try to get him on a nasal canula. It didn't work. His sats dropped into the 30's. He was put back on the mask at 15 liters to get him back into the 70's. They kept taking his blood to check his blood gases and they weren't so good. So he is back on the BiPap machine. It's a huge mask that secures over his head and neck. It forces air with pressure into his lungs. This will keep his lungs from collapsing. They had started his feeds at 10 cc's an hour - but they were turned off before he got any into his belly because he can't be on feeds when he is on the BiPap machine. He also can't have his B on this machine either. They also came to take his 3 chest tubes out today. He had just fallen asleep. It went well. That's something that should make him a little bit more comfortable. Although I don't know how comfortable he can possibly be. They gave him some drugs early on today. I asked if it was Valium - because that doesn't work for him. They said it was like Valium, but different. They gave it to him and it worked for a whole 10 minutes! They gave it to him again and it worked for another 5 minutes! Why don't people think I know what the hell I'm talking about when it comes to my son? They don't know Kevin, Chris and I like the 6th floor staff does. They will learn - and judging by the way my day went today and how irritated I'm getting - they better learn pretty damn fast. So, they ended up giving him something just for pain - not a sedative. It worked. He calmed down and slept. Before I left today I asked to see his doctor. He came in and I asked him to go over Kevin's meds with me. I wanted to know which ones he was currently getting and which ones he can go without for now. I also wanted to make sure he didn't get any meds that would upset an empty stomach. He said, "I know the meds. There are here in his chart." Then he rattled off 3 meds. I said that he has more than that and asked him to look them up in the computer. He did and he rattled them off to me. I said, "OK. That is most of them, but not all of them. And I want you to go over them with me ONE BY ONE and let me know what he needs and doesn't need right now and explain to me the reasons." (Asshole.) I'm not an idiot and I'm not a push-over. Then I gave Kevin lots of kisses and left. I sure hope we have a better day tomorrow.

That poor kid is so miserable right now - I ALMOST promised him some more cars! He's having a harder time getting over this surgery than a normal kid. But he'll make it.

Thursday, October 28, 2004 7:45 PM

I did not go to the hospital today. Gracie had her Halloween party at her school and I wanted to surprise her. She was very happy to see me. I'm glad I got to go. I figured it would be OK because he would be asleep today. But he wasn't. I felt horrible when I called this morning and they told me they were going to try to wake him up today and get his breathing tube out. I feel like I should have been there. I need a body double!

His breathing tube is out and it came out this afternoon. He needs a mask on his face and he hates it. He should be weaned down and get a nasal canula sometime tonight. He will handle that better than the mask. He is still pretty sleepy and slept alot today. So I don't feel too bad for not being there - but I still feel bad. I'll give him extra kisses tomorrow.

I wanted to thank everyone who has donated leave for me. I was told today that I now have enough to get through the end of the year! Thank you all so much! I did get e-mails from people notifying me that they were donating leave for me and I'm sorry I couldn't respond to you. My e-mail won't work. It's been down for a couple of weeks. I can read it - but I can't respond. So I'm thanking you this way!!

OK, I have to go kill Gracie now. Little Miss PMS just hit me and I need to track her down!!

Take care you all. I'll let you know how he does tomorrow. Hopefully he will make some more progress and get some of his chest tubes removed. I want to hold him so badly - but it's just not possible with all that equipment sewn into his little body. He'll get better...

Wish Gracie luck - hopefully she will live to see daylight again....

Wednesday, October 27, 2004 10:21 PM

Kevin is doing OK. His sats are in the low 80's. So the next step is definitely the cath next week to try to open up those pulmonary arteries to see if we can get the sats higher and to test the pressure in his heart. When they said that they were having a hard time keeping him sedated - they meant it. We went to see him today and he kept moving his legs and his head. He would open his eyes and cry a little bit too. But you can't hear anything because of the breathing tube. He's breathing over the respirator and they are trying to wean him off of that. Maybe by tomorrow night that can be removed. He is on alot of pain medication - but it doesn't seem to knock him out. I want him to be knocked out at this point. I don't want him to be miserable. But he's "out of it" for the most part. He looked at Chris and I and he can hear us talking to him. I just called and he is resting comfortably. He's sleeping. He still has a slight fever. About 100 degrees.

We were told there were alot of visitors coming in to see him last night. I guess his nurses on the night shift were going to see him from his regular floor.

That's all for now. Chris is going back to work tomorrow. He will need to take some time off next week if Kevin has to have another cath, so he needs to go back now. You'll hear from me soon!

Wednesday, October 27, 2004 10:15 AM

Kevin is stable. He has a fever and has been laying under ice cold towels since he got into the PICU last night at 10pm. His fever has come down 1 degree since last night - but it's still a fever.

Chris and I arrived at the hospital yesterday morning at 7am. Kevin was asleep. Sleeping hard. We didn't want to bother him. He eventually woke up and we got to hold him. He was just a little grumpy at times because he was hungry. He hadn't eaten since midnight. We were made aware that his surgery was pushed back to 11:30am. Fine. That's more time we get to spend with him. They have little sponges that are attached to little straws that are used to wipe out your mouth. I got one of those wet and let Kevin lick it. He grabbed it out of my hand and did it himself. It worried me because he doesn't have good aim because he's new at putting things in his mouth. But he did OK. I thought he would gag himself. But he didn't. His nurses were able to come by to say goodbye to him and we met quickly with Dr. Vricella. The anesthesiologist came by to get us and we left his room at 11am.

I walked Kevin to the OR instead of pushing him in a crib. Chris and I were both able to come back to the OR with him. I layed him down and started to get him undressed. He was pissed. The doctor said she was going to give him something so he would chill out. I asked if he was going to fall asleep from it. She said he wouldn't - he would relax. Boy did he ever! It took one second for that stuff to work. He was instantly stoned! He was hysterical. He tried to lick everything in sight. Tubes that were being passed over him, hands, the oxygen mask. He took the oxygen mask and held it to his own face and was licking the rim of it. It was pretty damn cute. Then, they said to kiss him goodbye and he was going to go to sleep. We did and he was asleep instantly. Chris and I handled ourselves pretty well. It's hard knowing that this may be the last time you see your child alive. But we had faith which made it alot easier. That was 11:25am.

We went into the waiting area and didn't hear anything until after 2pm. They had just opened his chest and they would call back when he was on the bypass machine. It took some time to open him up because of the old scar tissue from the least heart surgery. We didn't hear anything else until 4pm. We got a message that they had him on bypass at 2:50pm. We didn't hear again until 7:30pm when the doctor walked in to speak with us.

To pass the time we had rented some DVDs. I watched a movie in the waiting area with headphones. "Lost in Translation". It was horrible. Don't rent it. I thought it would be good since it won awards. What the hell were these people thinking giving this movie awards?? Yuck.

Loads of people checked in on Chris and I while we were waiting. People in the waiting area were looking at Chris and I funny because we had so many visitors that worked there. They just didn't know that Chris and I are the parents of the Prince of Johns Hopkins Hospital. He's like royalty there. I sat on my butt in the same chair for over 5 hours without getting up. I wasn't leaving until I got a call about Kevin. Chris and I went to eat lunch at dinnertime and we took turns. He went first and then I went. You can't eat in the waiting room and we didn't want to miss any calls about Kevin so we each ate alone in the cafeteria. I don't like eating alone. So I chatted with the people sitting next to me.

Dr. Vricella came in to speak with us and he was very tired. He said how much of a hard time he had with Kevin. The toughest operation he's had to do. This poor man had his first operation at 6:30am and was working on Kevin from 11:30am to 7:30pm. And he wasn't finished yet. He said that the pressure had come down in the right side of Kevin's heart, but not to what it should be. His sats also went up - but then they dropped. Into the 80's. He didn't know what the problem was. He thought that maybe the new shunt wasn't working properly so he wanted to give him a cath to inject dye to see where it would travel to. There was no cath team at the hospital that late. They had to be called in. Kevin was wheeled out of the OR towards the elevators at 8:30pm. A woman in the waiting area said, "Is that your baby?" and pointed outside into the hallway. We jumped up and ran out to see him. And then we cried. It's horrible to see your child like that. Plus, not knowing if this operation was a success or not and you put him through this pain. One of Kevin's poor nurse/girlfriends was with us and she was getting ready to leave for the evening and go on vacation. What a crappy send off. Let's get you in tears and then tell you to have a nice trip. Poor girl. She loves him just about as much as we do.

Chris and I waited in the same place until his cath was done. They were wheeling him past us into the PICU at 9:30pm. We wouldn't be able to see him in his room for at least an hour. We knew the routine. Dr. Vricella said that he had good news and the new shunt was working. But why is the pressure still higher than it should be? And why were his sats low? He is hoping that once Kevin is off the Epinepherin that his heart will relax and the sats will go up. HOPING. But not sure. As for the pressure, Kevin will have another cath next week to test it again. If it is still too high, he will have another risky heart surgery to open up the hole in his heart and make it larger to relieve the pressure. That will eventually need to be closed up in another surgery. Dr. Vricella explained that this is just one brick being put in place and we need to build a tower. He is hopeful for Kevin - but a little weary at the same time. Even if this didn't work and we can't go onto liver transplant - his life has been extended a little bit because the pressure isn't as high as before. We just need to take this one day at a time.

We went back to see Kevin at 10:30pm. It was so overwhelming. He had at least 30 tubes and wires attached to his body. Three in his chest, one up his rear, in his penis, sewn into his neck and wrist, wires in his heart that come out for an external pacemaker, just all over. It was loud with all the machines running that were attached to him, keeping him alive and comfortable. He is VERY swollen. He just looks like hell. But, to the medical people, he looks good. I called this morning to check on him at 6am. She said that they were having trouble keeping him sedated. Probably because he is used to pain medication. I don't know. I just hope they get it under control because I don't want him awake at this point. How miserable.

I have to go. I wanted to leave at 10am to get to see him. Thank you all so much for your love and support. We have a long road ahead of us and I'm sure you will all be with us each step we take. God bless.

Tuesday, October 26, 2004 9:22pm

I just spoke to Karen. She said Kevin is finished in the Cath lab and that everything is working as it should. She will fill you all in on all the particulars tomorrow.

Please keep him in your prayers and his mommy and daddy as well.

Love to all,
Gan

Tuesday, October 26, 2004 8:17pm PM CDT

Hi Everyone,

Kevin has made it through an extremely difficult surgery. Karen called us and said that the doctor told her that the pressure was somewhat reduced in the one side of his heart. They still have to run some tests to make sure that everything is functioning as it should. He should be in surgery until probably 10ish. I think they have to run dye through to make sure the blood is flowing properly. If I find out more tonight I will let you all know. If not tonight, then I will update in the morning. Kevin continues to be God's proof that miracles happen.

Thanks to all of you that care so very much about our special Kevin.

Love to all,
Gan

Tuesday, October 26, 2004 2:42pm

Hi Everyone,

Kevin's surgery got moved back again.

Surgery was started at 11:20am and they opened his chest at 2:00. This surgery will take about 8 hours. I will let you know when surgery is over and he is in recovery.

Thank you all for the many many prayers that are being said for Kevin and his family. With a website that has been viewed over 25,000 times I know that you all care about him.

Love to all,
Gan (Karen's mom)

Tuesday, October 26, 2004 4:31 AM

Kevin's surgery has been pushed back to 9am. You should hear from us in the afternoon after 2pm.

He'll be just fine.

Monday, October 25, 2004 9:30 AM

Everything went fine yesterday. Gracie wasn't as good as last time so we didn't get to spend much quality time with Kevin. But the day was OK overall. The playroom was closed, but the nurses let us in with Gracie as long as we stayed out of sight and kept the door locked.

Kevin's fever from the other day went down and hasn't come back. I was told that Dr. Lau came in and asked the nurse about any fevers. She told him Kevin didn't have one and Dr. Lau said that if he did, to put the thermometer on ice. He really wants to get this surgery over with. So do we. But my tummy is starting to get upset. I could have carried on a conversation with it last night.

We have really lucked out with nurses the last week. Kevin's (and our) favorite nurses have had him. We got another good one today. I told her they need to work out a schedule as to who would be going to the PICU with him to take care of him. I sure wish they could. I'm sure they will be checking on him though.

We were told the Kevin's surgery will be at 6:30am tomorrow morning. Gracie is staying with Gan and Pop tonight and tomorrow night. Chris and I want to get out of here by 4:30am tomorrow. Chris is used to that - I'm not! I hope I get a few hours of sleep that night. I will be staying at the hospital tomorrow night.

God I hope this all goes well for our little guy. No complications. I'm nervous - but I'm not scared. At least not yet. I haven't been for the last 2 procedures Kevin has had. But then again, they weren't nearly as scary as this. I think that I'm not scared because God is calming me. Everything must turn out OK then.

I know Kevin is in your prayers. We'll update you as soon as possible tomorrow. I will have one of his Aunt's update the website when his operation is over. Bye everybody...

Saturday, October 23, 2004 9:31 PM

Kevin is still doing pretty good. He had a slight fever when we left, but it was only 99.5 degrees. They hadn't checked it again when I had called last so I will check on that when I call before bedtime.

When we arrived today Kevin was in his Redskins outfit. It was cute. We also put him in his Frankenstein booties that Nina got for him. We need to get him in the Halloween spirit. So I put on a couple of Halloween tatoos too. They are on his legs. He matches his sister. She has 4. Mommy and Daddy both have one. Luckily we ran out of tatoos. Gracie will be going to the hospital with us tomorrow. I hope she does as well as she did last time she went. By the way, she learned last night that you can take off a Barbie's head and fill it with water to make a little water shooter. I teach her all I can....

Kevin has one heck of a diaper rash. He only seems to get those in the hospital. I understand they can't change him as often as I do when he is home. We asked them today to not use baby wipes right now. Only a warm cloth. I don't want the chemicals to irritate his rash more. We are using special cream. Hopefully it will start to work soon.

Oh, we got a little surprise yesterday. Maryl told another child life specialist that maybe we would be interested in something happening on December 4th at the BWI airport. She explained that it would be for us to take Gracie to. We go to the airport, check in and get on an airplane and go to the North Pole. Not really, but the plane will taxi us to a winter wonderland type of place where Gracie can meet Santa. She never has. I think she said only 45 families get to do this. I'm not sure if that was from JHH only or 45 families from different hospitals. It sounds great. We never get to do anything cool like that. I'm sure Gracie will love it! (Thanks Maryl for letting us know about that!)

Kevin didn't get to go up to his 44 cc's an hour of his feeds. He threw up a few times last night so the nurse didn't bother to check with the doctors. That's fine. Maybe after he recoups from his surgery. Kevin is down to just about 15 pounds now. I don't know what it is about that place. It just isn't home I guess. I'm expecting him to lose much more after his heart surgery because he will be off food for a couple days. I bought him some of those baby cookies at the grocery tonight. I'm going to see what he does with them tomorrow. He likes Coke too. I gave him my cup and tilted it towards him and he would stick his tongue into the cup to taste the Coke. It was funny. I like it when he feels good. He seems much happier.

Gracie is calling and I need to get her to bed so we can get up at a decent time tomorrow without any attitude. She has woken up with PMS several days last week. Wish us luck with tomorrow!

Friday, October 22, 2004 8:21 AM

Kevin had a good day yesterday. He wasn't too fussy and he only threw up once. When I arrived he was pretty stinky. The nurse that had him helped me give him a bath. When he was all finished she gave me some of her cucumber-melon lotion to put on him. He smelt great all day. People were even commenting on it when they walked by him. I sat him on my lap so he could see out the door and watch everyone at the nurses station. Loads of people walked by and would say, "Hi Kevin!" and wave to him. He watched the Teletubbies yesterday too. They didn't have any Baby Einstein movies. I'll take some of his own in today. Yesterday was all the Teletubbies I need to see for a while.

A new little girl was admitted to his room. I wasn't paying attention to what he mother and the nurse were talking about but when I heard the word COLD, my ears perked. COLD? I asked the nurse about it and she went to get the charge nurse. They told me that it would be OK because Kevin and her didn't have the same nurse and they were far enough away from each other in the room. OK. I understand. I hope nothing happens. I'm the one who wanted him to stay there.

I asked the nurse yesterday about therapy for Kevin while he was there. If he were home I would get him involved with the Infants and Toddlers Program to get him therapy - so why not have it there. She called and his therapy starts today. I would prefer that they come at a time when I'm not there so he would be getting attention while I was gone. But if they do come while I'm there I can watch and learn some of the things they do so I can do it to him also.

While I was playing with him yesterday I leaned back in the chair and I sat him on my chest facing me. He liked it. So did I. He cracked me up. I would laugh and his eyes would get huge because he was jiggling. Then he figured out that his foot was near my mouth and was trying to get his foot in my mouth and using his toes to play with my lips. It's OK, he hadn't been up and running around so his socks weren't dirty. :)

That's about it. I hope he does as good today as he did yesterday. One of his main girls has him today which makes me feel great. I don't feel bad leaving him in the afternoon knowing someone like her is taking care of him. She said he had a good night and only had one little spit up. I asked if he could go up to 44 cc's an hour on his feeds then. That's his goal. She said she would ask. I don't think it will be a problem. They wrote orders for that last time we were there.

Well, I've got an early start today so I'm going to see if I can get to my little man a little earlier than usual. Bye everyone!

Thursday, October 21, 2004 8:36 AM

It was not a good day for mommy yesterday. Kevin was fine - mommy was a blubbering mess. The GI team came by and told me that Kevin would be discharged Thursday on IV antibiotics. They switched him to a new antibiotic that is only given once a day compared to the 8 times a day he gets now from 2 antibiotics. I asked who would be the person to give him the antibiotics. They said either the hospice nurse or the nurse from the nursing company that comes at night. Fear just overtook my body at that point. The nurses that we have are incompentent and would screw it up. I just know it. They can't even manage to get his food done correctly each night. (The other night I noticed that food had leaked all over Kevin's boppy pillow in his crib and on his sheets and blankets. SOAKING WET. Not a little damp. Dripping wet. So bad that it made the color from his boppy pillow stain his sheets. It was like that from the night before. And I was finding this over 24 hours later. It must have been hours worth of his food that he didn't get into his belly. The nurse hadn't told me. I confronted her and she said, "Oh, sorry, I didn't notice." It's your job to notice! Chris had a good point; she must have noticed at some point because she needed to close the port of his tube that was open and letting the food out. And this is the kind of person the doctors wanted me to hook a machine up to my childs chest and put medication into his heart??? Not if I can help it. The hospice nurse is a boob and a half - I wasn't about to have her do it either!) I didn't say anything to this doctor when they told me. I don't know her and I didn't feel comfortable. Plus there were about 6 doctors there staring at me. I felt like I didn't have a choice. If they discharge him, I have to take him. Or health insurance won't cover him. What the heck was I going to do? I called Chris and he was upset too. Then I started to cry. And cry. And cry. I could stop for a few minutes - but then I would start up again. Anna Ruth came in to see Kevin on her lunch break from school and to give me a couple of pictures that she took with Kevin and Julia. These are Kevin's 2 most favorite girls in the world. Catherine is another one he loves. They are adorable pics. I'll have to get them posted on his site for you. Anyways, she wanted to know what the plan was for Kevin and I started to cry again. Then that got her upset. She paged the patient advocate for me. Anna Ruth agreed that if I wasn't comfortable bringing him home, I shouldn't have to. Plus, they aren't sure that the new once a day antibiotic is going to keep him from getting a fever so we may have to bring him back early anyways. She had to leave and get back to school. Barb came in and was trying to figure out a way to help me. She said that normally I'm made of steel and people hadn't seen me like this before. I had some other nurses tell me the same thing. I think I reached a limit yesterday. We just keep getting jerked around. The doctors didn't want Kevin to stay because they didn't want him to catch RSV. I don't either - but I don't want him getting hurt at home by one of these idiots that takes care of him. I was scared to bring him home. It would be different if I could give him the antibiotics by mouth or just have to inject it into his central line. I could do that. But it has to go in slowly via an IV machine. I don't have one and I can't do that. I ended up having to leave. I was a wreck. My head hurt and I was tired from crying. I asked the case manager to have Ryan (a doctor we are familiar with) to call me at home after 5:30pm. I was going to try to talk him out of making Kevin come home. I called to check on Kevin at 6:30ish and the nurse said, "Did you hear the news?" No.... She said that Kevin was staying and being switched back to his normal antibiotics. Word had gotten to Ryan about how freaked out I was so he's letting him stay. Thank you Jesus! Ryan called shortly after and I cried. I was trying to explain my reasons for wanting him to stay. He asked why I didn't say anything in the first place and I told him I wasn't comfortable with it. Kevin will stay in the hospital until Tuesday. If his surgery stays on schedule for Tuesday, he will then be switched over to the Cardiology service. If the surgery is cancelled for some reason, he will be discharged on Tuesday. Boy I was relieved last night. I slept a bit better too. Five straight hours. That doesn't happen for me often.

The doorbell is ringing - it's the Robert's Oxygen lady coming to inspect his equipment. Gotta run!!

Wednesday, October 20, 2004 8:43 AM

Kevin is doing well. Still no fevers. Chris went to the hospital yesterday so I could have the meeting with Dr. Uma and the State Dept to get Kevin's nursing coverage renewed. Dr. Uma cancelled. I wasn't really surprised. She said that it was because Kevin was in the hospital and we needed to wait until he was discharged. Like he won't need nursing care when he is discharged? All she needs to do is verify he needs the care and sign off on it. When I took Gracie in a couple of weeks ago to get her ankle looked at, the first words out of Dr. Uma's mouth were, "I don't understand why we need to have this meeting. Can't I just do it by phone or fax?" You could tell she didn't want to have the meeting. I can't look for a new pedicatrician right now - it's just not feasable. So, I don't know when we will have the meeting. But the State Dept said that I can keep the nursing care as long as we are trying to schedule a meeting. They also told me that they have never experienced a doctor like this before. Just my luck.

Chris' afternoon at the hospital got a little hectic. He said that Kevin was throwing up and his NG tube was coming out. The nurse wasn't helping him. So the tube ended up coming all the way out and Kevin (and Chris) was a mess. Chris was furious. He said the nurse wouldn't get off the phone to help. She was new. She shouldn't have been responsible for 4 babies in the "picnic" area if she is that new. She doesn't have him today. I called this morning and he is doing fine and had a good night. The nurse that has him now is familiar with him. But not one of our favorites. The doctors also talked to Chris yesterday. One of them was Dr. Doom. He started off by telling Chris that Kevin's blood work looked pretty bad. Chris said, "All I was told was that his CRP was high and that was the only problem." Eventually Dr. Doom stopped talking. The GI doctor said that Kevin's CRP is coming down. They also said something about him coming home and being on the IV antibiotics at home until his heart surgery (which is now scheduled for Tuesday.) How in the hell and I supposed to give IV fluids at home? I don't know how to do that. I guess we'll have to get the equipment and learn. I also need to learn how to take care of the incision cite of his central line. It's so easy for these people to say, "OK, take him home." It's not as easy as they think. I don't even know if they "think" about what it's like to handle something like this and the time it takes to get things in place for Kevin. I'll talk to them today. They need to get their crap together. People from GI and Cardiology don't communicate with each other and it makes it tough on us.

Another problem I now have is that I'm running out of donated leave for work. I sent an e-mail to the person in charge of the solicitations for donations and she isn't cooperating. I only have 3 weeks of leave left. I can't take leave without pay because my paycheck pays the health insurance for Kevin. I'm going to ask some friends at work if they will send out an e-mail for me. I just don't know what I'm going to do if I run out of leave. It's just one more thing added to my plate of worries. I start to get a little depressed - but then I realize I don't have the time to be depressed. And then I move on.

I'm running late and I have no idea how long it will take me to get to Kevin today. It took me 2 hours on Monday to get to the hospital. I hate driving in rainy weather. I'll take my time and try not to hurt anyone out there! You all take care too!

Tuesday, October 19, 2004 8:41 AM

Kevin is still doing OK. No fevers. He seems to be getting used to his new central line. He's laying on his tummy to sleep and it isn't bothering him.

I spoke to the cardiac nurse yesterday and she told me that the part they need has come in and Dr. Vricella is happier with it than he thought he would be. She told me that part of the piece is man made and other parts will be made of human tissue or piggy tissue. But, Dr. Vricella is leaning towards postponing the surgery. They have tested Kevin's white blood count and his CRP. Those are the two things that show possible infection if they are elevated levels. His blood count is OK, but the CRP is elevated. They don't want any bugs in Kevin for surgery. He said that he would hate to have Kevin get through the surgery just to have him pass away days later from an infection. Once they put the new piece in his heart, his body will automatically try to attack it. So if there is already a bug in there - he would do much worse. I understand. The plan is for the GI team to decide on how long to treat Kevin with antibiotics. Once they decide that, then Dr. Vricella will schedule Kevin's surgery for the very next morning. So we don't know if it will be 2 days, 5 days, 7 days, etc. I didn't speak to anybody on the GI team yesterday. Chris is going today to be with Kevin since I have a meeting with Dr. Uma to get his medical assistance renewed for nursing care. I will have him check to see if the doctors have made a decision on how long he will be on antibiotics. The cardiac nurse said he will stay in the hospital the entire time so they can draw blood to check his WBC and CPR levels each day. Luckily, Kevin has that new line and he won't have to get stuck again. I think that's great.

I hope everyone has a wonderful day and I'll update in the morning! Take care!

Oh, I forgot to tell you something cute he did yesterday...
He gets thirsty so we give him water on his tongue with a syringe. I had him over my shoulder yesterday and asked the nurse to give him some water. She had never done that for him. She walked over and he saw the syringe and stuck his tongue out. She thought it was adorable. Other nurses were coming in to see him drink water. But that wasn't the cute part...Later on, his nurse was talking to another nurse and Kevin was sitting on my lap looking at her. They were talking about work. She turned and saw Kevin watching her and she said, "Kevin, you just have to hear all the stuff we complain about." She had a saline syringe in her hand and shook it at him while she was talking. He stuck his tongue out at her. She cracked up. She felt so bad. He saw it and thought he was going to get a drink! She hadn't thought about that. So she asked if she could get him another drink, which of course she could. He's small - but he isn't stupid!

Bye everyone!

Sunday, October 17, 2004 6:42 PM

Kevin's doing fine. He's had a rough last 2 days. We got to the ER a little before 6am Saturday morning. His fever was 103.6. He was miserable - but I have seen him feeling worse. The nurse said that they had been expecting him because I had called the doctors the prior evening when Kevin wasn't feeling good. I almost started to cry when he was getting checked in. But - I stopped. I have to be strong for Kevin. We went to the room in the back of the ER and waited for a doctor. It was an intern that was familiar with Kevin. He said he would work on getting us admitted as quickly as possible. (It took 6 hours.) He said they would start IV and antibiotics - the usual. Sounded easy - but they couldn't get an IV in. Three different people tried in the ER 7 times. He needed the antibiotics - so they had to give them to him via shots in his thighs. He was more upset by that than the IV sticks. He was so tired. When the doctor was trying I told Kevin that HE would buy him a car. He said, "What? Why me?" I told him that I had promised Kevin too many and I couldn't promise him any more. Plus I told him that he was the one hurting Kevin, not me.

We went up to his normal floor about noon. Dr. Lau was on duty. He came in, shaking his head. He said, "What kind of fever did he have that you needed to bring him back." (Kinda like I was overdoing it by having him there.) I told him 103.6. He said, "Oh. OK." He asked where his IV was. I told him they couldn't get one. He asked if anybody 'good' tried. I told him yes and even a doctor tried. He said he didn't care about any doctor trying. He needed an IV. While we were in the ER I asked about a central line for Kevin. He hasn't been able to have one in the past because it could infect his heart. But, he is going to get one when he gets heart surgery so why not give it to him now and keep him on antibiotics and pray it doesn't get infected before his operation. Dr. Lau agreed. He said he wanted an IV and antibiotics for 2 days before he would do the central line. He would do it Monday. But if they couldn't get the IV, he needed shots of antibiotics and would get the line today. Dr. Lau told the nurse to get someone good to gat an IV in Kevin. As he walked out, he told the nurse again, "Someone good!" She said, "OK!". The person they called didn't get it. Chris and waited for Kevin to rest and we left for the evening. Kevin was put in a regular room with just 2 beds. It wasn't a high observation area like he usually has. I didn't want to leave. He had a little roomate that I didn't want him to bother if he was crying or alarms going off. (But I hear he did OK.) I cried as soon as I left his room. Cried waiting for the elevator. Cried in the elevator and into the bathroom on my way out. I calmed down before we left the hospital.

We called to check on him last night and he had gotten 3 more shots for antibiotics, plus they eventually got an IV in. In this little thumb. How painful. When we arrived today, his food was shut off. That meant he was going to the OR for his central line today. He was taken in at noon and out within 30 minutes. It's through his neck and comes out his chest by his heart. They can take blood from it and put antiboitics in. Much easier for Kevin. No more IV sticks. He was fussy after the surgery because of the anesthesia - but he's chilling now.

We aren't sure if he will be having the surgery or not on Thursday. They said something about him coming home and me doing the antibiotics through his new line. I don't know how to do that. I don't have an IV pump at home. But he can't stay if the insurance company doesn't think he needs to be there. We have received 2 denial of coverage letters for Kevin so far. One for 1 week in September and another we just got that they won't cover last Wednesday. I also have received a letter from a collection agency about a bill not being paid to Hopkins. It's for his blood draws when he was going to the clinic there. Hospice is supposed to pay for it - I guess they haven't!! Jeez - I don't need this crap. I have enough on my mind.

Well, we're gonna go grab dinner and Gan and Pop's house and fetch our daughter. I'll let you all know what's going on with him after I see how he's doing tomorrow. Take care!

Saturday, October 16, 2004 3:16 AM

It's pretty early in the morning and Kevin is getting worse. We are getting him ready to leave for the hospital. His fever doesn't seem to be too high, but he is absolutely miserable. He can't rest.

I as still up at midnight wondering if there is something in our house that could be causing this. But I haven't changed anything. The medications have all been replaced, so it's not that. The water is boiled for him. Then I remembered that he has been off the antibiotics for 1 week. He was in the hospital, but they had taken him off the antibiotics before last Saturday. He remained in because of the biopsy. The longest he has been able to stay well after the antibiotics since August has been one week.

Well, I need to go. Long day ahead of us and our little boy. God I wish this could end for him and they can figure this out. It's so depressing to have to see your child go through all this pain for nothing.

Friday, October 15, 2004 11:45 AM

He's home and doing OK. Not wonderful, but OK. He's a bit grumpy and he has a low grade fever. But he isn't nearly as miserable as with the past fevers so I'm not rushing to the hospital with him. He is able to rest where he couldn't rest before with the fevers.

When we left yesterday he was in his stroller and had about 15 nurses swarmed around him cooing over him and telling him goodbye. They all said not to come back before next Thursday. That didn't last - I'll tell you why shortly. Kevin has also been put on 3 new medications. Vitamins actually. They told me that his bones are getting weak and they fear he may be able to break them easily. That's all this kid needs. So he is on calcium, Neutra-phos and vitamin E in addition to his other 11 medications. Since his liver isn't working properly he can't absorb the nutrients from his formula. The hospice pharmacy told me they couldn't get those new meds to us until Monday. So we got the prescriptions and had them filled for 3 days worth at the hospital. Three days worth of these 3 vitamins cost $115! That hurt! I'm glad I didn't ask for a months supply...I would have fainted. But, while we were waiting for the meds, Kevin decided that he didn't want his NG tube in his nose anymore and pulled it all the way out. There was no way for me to put it back in. We could have left him off his food until we got home, but what if there was traffic or an accident and it took longer? Also, it was going to be hectic getting him all settled and the first thing we would have had to do was to put a new tube in when we got home. Forget it. I called the 6th floor and asked them if we could come back and get a tube put back in. Of course they helped. We were back in his regular hospital unit within an hour after we left. I told the nurses that was our quickest turn around time yet. They put in the tube and we left.

He was fussy last night at dinnertime. Nina got him to sleep and he stayed asleep for a few hours. I took him up to bed at 9pm and he slept practically all night long. We had a nurse. We have one tonight too. But none for Saturday and Sunday. Gracie didn't sleep good. She got me up at 2am and argued with me until after 4am. I was getting a little short on patience with her after an hour. So, Momma is tired today. But I'm hanging in there.
Kevin woke up with a fever of 100.5 and I gave him Advil at 6:30am. He is still a little warm, but not too bad. He was pretty fussy all morning. He has had some moments where he will sit awake and not cry - but it's not too often. Hopefully he will get used to being home and get over this. I don't want him going back to the hospital. Not until Thursday morning! I have to run - it's time for his medications! Take care!

Wednesday, October 13, 2004 8:20 PM

Surgery has been postponed! I arrived this morning and the nurse told me that the tissue bank doesn't have the hemograph for Kevin's heart yet. The surgeon even called this morning to check. They said they hope to have one early next week. Kevin's surgery is on for NEXT Thursday now. Same time, same place. So, he is coming home tomorrow! They told me he could have come home today, but they gave me no notice. I didn't have a car seat, stroller, medications or nursing in place. Now I've got the meds and the seat and stroller - but no nursing yet. Hopefully by Saturday night we will have a nurse. Momma is going to be very tired!! But, at least we will have him home for a little bit. I can get the weight back on him that he has lost. I pray that he doesn't get one of those nasty fevers before his surgery. By the way, the biopsy came back negative. So they still don't know what is causing those fevers.

Gracie is trying to get on the computer and in my face so I'm gonna sign off now. I will keep you all posted on how he is doing at home. He gets a tubby on his first night - it's been a while since he's been able to have a real bath. He'll love being home. And we'll love having him home again - even if it's just for 1 week.

Wednesday, October 13, 2004 9:05 AM

Kevin had a pretty good day yesterday. He was much better than the day before. At first Kevin only had one roommate - but as the day went on, it got busy and full. Two more babies were admitted during the day. I need to leave the hospital by 3:30pm to be able to get Gracie by 5pm, but at 3:30pm, it was crazy in that room and there was no way I was leaving Kevin. Nobody would have been able to pay him any attention if he needed it. It was just too hectic. Babies crying, IV's getting put in and then not working, mothers crying....If Kevin was asleep, I would have been fine. But he was a little fussy laying in his crib. I tried to get him to sleep, but he wasn't interested. Things settled down about 4:30. He was still awake, but getting tired. I felt it was OK for me to leave. I called to check on him a little before 7pm and the nurse told me he had fallen asleep for a little while. When he woke up he played, but got bored. He wasn't in his room when I called. She said that two of his most favorite nurses came in and took him for a walk and were taking his picture (Julia and Anna Ruth). They had brought him back while I was on the phone with her. Then one of them spoke to me and told me she would see me Thursday morning. I was talking to Julia yesterday and she told me they originally thought his surgery was today, Wednesday. One of them said that she wasn't working that day, but she would just have to come in anyways. The other one said that she had class, but she was going to have to skip it so she could be there for Kevin. Then they figured out that it was Thursday instead. They will both be there. Chris and I were talking and we appreciate how much they care for Kevin.

I didn't see any doctors yesterday. I have no idea what the biopsy results are. I should get them today. If I don't see anyone then I will have Kevin's nurse page them.

I'm getting a little sick to my stomach knowing that the surgery is tomorrow. My nerves are showing physically, but I think I'm doing OK mentally. I'm not crying yet or worrying about it constantly. But I do think about it. He'll be OK. I'll be a wreck tomorrow. I will be taking a change of clothes with me tomorrow in case Kevin isn't doing well. Then I'll stay. You can't sleep in the PICU, but they have a room with 5 fold out chairs that I could rest in. If he is doing well enough and I feel comfortable with the situation, I will come home. Hopefully that will be the case. Well, it's 9am now...I need to leave for the hospital. I won't be able to update tomorrow morning because we will be leaving a little after 6am. But I will be sure to let you all know how he did as soon as I can. Maybe one of Kevin's aunts can go online and update if I can't. I know your prayers are with Kevin and my family. Thank you all so much! God bless.

Tuesday, October 12, 2004 8:56 AM

Kevin still isn't home. On Sunday the doctors mentioned something to us about a possible liver biopsy for Kevin, but they didn't know when it would be. They want to make sure he doesn't have cholangitis. It wouldn't be good for him to go into heart surgery with a bug like that. When I called the hospital on Sunday night to check on him the nurse told me that the doctors wanted the biopsy on Monday and he was on standby for the operating room. His food was turned off at midnight. Chris had to go to the hospital early yesterday because he needed to give blood for Kevin's heart surgery. I met him later that morning. Kevin was cranky because he was hungry. He was OK as long as you held him and stood up with him. He didn't want you to sit down with him. He's lost almost an entire pound since he's been there this time, but he's still a load to hold for a long time. It makes your arms and back start to hurt. Let me tell you about Sunday first....

A doctor that we dubbed "Dr. Doom" came in to speak to us on Sunday. He's a cardiologist. (I met Dr. Doom back in March when he mentioned something to me about Kevin dying. At that time, I didn't know there was even a possibility of him dying and we hadn't been told about his cath results. This was before we had "that" meeting. And this guy seemed to be pretty nonchalant about it.) Anyways, he came in and told Chris and I that they reviewed his cath at their cardiology meeting on Friday and they feel that this is the best way to go right now even though Kevin may not get through it. He went on to say how the cath didn't change Kevin's outlook too much and there is a good chance this won't work and he won't get through the surgery. Even if he does get through the surgery there is a good chance the new tubing that is getting put in won't help the pressure in his heart and blah blah blah. This man was the most negative asshole I have ever met. Chris didn't seem to care for him too much either. This guy had another doctor with him, I think she was walking around with him learning from him. You all don't know how close I was to saying, "Ma'am, are you learning from him? If you are, I suggest you don't pick up his beside manner because it sucks." Jeez - try to have SOME positivity! This guy made Chris and I feel like we needed to go call the funeral home and ask them to go on standby. After he left, Chris and I went to lunch and complained about him almost the entire time. We stopped ourselves and said that we needed to forget about what he said. But that was hard to do. But, if he comes back today, I'm going to tell him that I have no questions and I don't want to hear his opinion ever again when it comes to Kevin. If he inquires as to why, then I will tell him what I think. I want Kevin to grow up and come back to Hopkins just so he can kick that guy in his doodads. OK, I'll let that subject go now....

The biopsy did happen yesterday. We had no idea what time it would be because the schedule was full and they had to find a spot for him. They told us around noon that Kevin would be next and we had 15 minutes. People came to do a sonogram first so they could mark the spot on Kevin where the doctors needed to put the needle in. Kevin did fine with that - until the woman went to write on his side. That irritated him. I guess no tattoos for him later in life if he didn't even like a majic marker. The OR nurse had come for him and was waiting for the sonogram to get completed. Then, we wheeled him off to the OR. I got to go back to the room with him. I got gowned up and was able to hold him until anesthesia was ready for him. Then I layed him down on the operating table and he fell asleep. I gave him kisses and left. It wasn't going to take long and I wasn't worried. Poor Chris was. He had to stand at the doors and watch Kevin and I go to the OR. But I came back out to the waiting room and sat with Chris until Kevin was finished. The biopsy didn't take long - 15 minutes. But it was almost another hour before he came out because they were getting blood for cultures and putting in a new IV. (Now he has an IV in each arm so he can't use his hands.) When he came out of the OR he went to the recovery room. He had to stay there for 2 1/2 hours. That stunk. He was miserable. I don't know if it was pain or a side effect from the anesthesia because he was like a little wild man at times. I asked the doctors to give him morphine because he was so miserable. They did. And he calmed a little bit. But he stayed awake for a long time. He fell asleep in his crib laying on his belly for about 20 minutes. Then it was time for him to go back to his room and he woke up. His NG tube was out and he needed that put back in so he could start to eat again. The doctor said she wish she knew because she would have done that while he was asleep. But it was too late. I helped the nurse put it back in when he got back to his room. It took 2 tries. The first try it went in, but then it started to curl up and come up into his mouth. I told her to yank it out and start over. He was furious, but it wore him out even more. So he got into a sound sleep before Chris and I left (about 6:15pm). When I called at 7pm, he was still sleeping.

I called to check on him this morning and he was doing OK. They hadn't needed to give him any morphine last night or this morning. I hope he isn't as cranky today and he was yesterday. But I'm sure his side will hurt a bit from the biopsy needle. They should have the results of the biopsy today.

I gotta go! I want to try to be at the hospital by 10am! I'll give him lots of kisses from everyone!

Saturday, October 9, 2004 11:09 PM

Kevin isn't home. Not yet anyways. We called yesterday morning to check on him and they said that his IV was back in and he was back on antibiotics because he spiked a fever the previous night. When we arrived yesterday morning the doctors told us he wouldn't be coming home yet and they were getting ID involved again. Kevin wasn't a happy camper, but he wasn't nearly as miserable with this fever as he had been with all the others before. I was thinking maybe it was caused by the cath or something. The ID people had some questions and wanted to take some more blood. They also were thinking about scraping his foot. Kevin's chest scar and foot scar get little tiny bumps on them that come and go. They aren't like pimples. I have no idea what they are. It's something he's had since he had his heart surgery last November, so it's nothing new. So, I wouldn't let them scrap his chest or foot. They agreed it wasn't necessary since they aren't new. They said they would not take any blood from Kevin Saturday or Sunday. And they took him off the antibiotics to see how he did. His fever came back today, about 102 degrees. Then it got a little higher this evening. He is getting pretty dehydrated even though they have him on IV fluids and Pedialyte. The doctors were also called back because Kevin was gagging and throwing up this morning - alot. I said that maybe the NG tube that the PICU put in was making him do that. It was a size 8 and that was too large for him. But the PICU told me that was all they had. It was only a 3 day tube. We took our own tube to the hospital and asked that when they change it to use our tube. But after having Kevin gag all morning and throw up several times, I asked the nurse to call the doctor back. I wanted his tube taken out to see if it made a difference. The doctor said that was fine. The tube was taken out and he stopped gagging! They put him on full IV fluids in the meantime for hydration. When Chris and I left his tube was still out and he was asleep. But we called a couple of times this evening after his tube was put back in and he has been fine. The first time we called the nurse said he hadn't urinated in hours so they had to cath him. She said the pee was very, very dark so they were worried about his hydration. His fever was also almost 103. Chris just called again now and he is doing much better. He is back on his regular food, off IV fluids for now, his pee is back to its normal color and he is playful. And no fever. What the heck is he doing?

When the doctor was there with us I asked her to check inside his mouth for teething. Every time I put his "B" in his mouth he would take one suck and rip it out. I had to hold his arms down because he is such a little fighter. I couldn't check on my own. He has 2 more teeth! The top two center ones, so now he has 6! They are cut through already. She said his fever isn't because of that though - it's too high. I don't know what is wrong with him. And neither do they. They took cultures today (so much for having the day off from blood draws.) I'm sure they will be negative. Hopefully we can get him home for a few days before his heart operation. At least a couple. I miss having him home. Now I miss my Gracie too. She left this morning with Gan and Pop for Pennsylvania for her Great Aunt's birthday party. I heard she is having a blast. It's pretty quiet around here. But she should be back tomorrow or Monday. I guess it depends on how well she behaves! Hey, it just dawned on me...I should go take a bath since my kids aren't here to be in it with me. But I don't think I will. Last time I took a bath unbothered I fell asleep within the first 10 minutes and woke up in chilly water about 20 minutes later. I'm tired and would probably do that again.

Well, I'll run up to bed I guess. Chris and I want to leave early tomorrow so we can spend more time with Kevin. He's such a little sweet pea. Our love to all!

Friday, October 8, 2004 8:53 AM

Kevin's surgery has been scheduled. It will be next Thursday morning at 8am. We went over things with the anesthesiologist and the cardiac nurse. When to stop feeds, medications, etc. Chris will be donating blood for Kevin because he will be needing a few transfusions. We were told that the recoup time is only 5-7 days. There are a few reasons why his surgery may be postponed: if her were to catch a cold, if the surgeons are called for a transplant or if there are no PICU beds open for him to go to after surgery. Hopefully none of those will happen and we can get this over with.

Kevin's IV failed yesterday shortly after we arrived. They tried twice to get it back in. They couldn't. The PICU doctor called Kevin's GI docs to see if Kevin really needed it back in - they told her yes. So, they had to try again, and again. At one point Kevin had two people sticking him in each ankle at the same time. It was horrible. They finally stopped and gave him a break. He was exhausted from all the screaming. I asked the doctor to call again and get them to change their minds. They said it was OK and Kevin did not get a new IV. She was sorry that she couldn't talk them out of it before they had tortured him so much. He is just 2 days shy of having a 2 week course of antibiotics. Hopefully he won't get a fever before his surgery. They said they could proceed anyways - but I just don't want that to happen.

So, since he doesn't have an IV - and his surgery isn't until next week....he's coming home!! Tomorrow! They said yesterday at 4pm that he could come home today. I told them I just couldn't do it. I can't get nursing, hospice and all of his meds replaced by today. By the time I would get home yesterday all of those places would be closed. So, they are keeping him until tomorrow and Chris and I will go get him in the morning. I'm excited. He's going to be so happy to be home. It's so much more comfortable here.

I think that's all the news I have for today. Time to go to Baltimore!!

Thursday, October 7, 2004 8:44 AM

I'll just start from the beginning of the day and work my way through.

Chris and I arrived and Kevin was a little cranky. He hadn't had anything to eat since midnight. The cath nurse came by to speak to us and reassure us that she didn't think anything would go wrong. We also discussed the DNR again. Different people tell us different things. But we are getting used to that. Kevin was taken off the DNR officially, although he didn't have to be. But I didn't mind because I felt calm about the procedure and I knew that nothing was going to happen. Poor Chris was a nervous wreck. The priest then came by to say a prayer for Kevin and bless him. He didn't throw up this time. He kept trying to grab his prayer book out of his hands though. We said prayers and he read a verse from the book of Mark and blessed Kevin and made the sign of the cross on his head. Then he left and said he would check on us later. Then cath doctor came by. I asked about how he would know if the sats were high enough during the procedure since Kevin's sats go higher when he is asleep. He said that he wants to see how high he could get his sats with oxygen. He had already talked to Dr. Lau and said that if the sats were too low, but could get high enough with oxygen, then just keep him on oxygen after his liver transplant. He said he would measure the pressures in Kevin's veins first and if they were 13-15, he wouldn't proceed with the cath because that pressure would be too high for him to go through a liver transplant. But last time they were measured at 5 and he didn't see any reason why they should go up. He left and said he would see us downstairs at the lab. The anesthesiologist came by to go over some issues and questions about the DNR. Then his supervisor came. Again, I went along with what they wanted because I didn't feel it would be a problem. We packed Kevin up and they started to wheel him out of the room. I was fine. Until Kevin's nurse started to cry and gave me a hug. I toughened back up and we went with Kevin down to the lab. While we were going down the hall, the supervising anesthesiologist said that we were allowed to give him a kiss and leave. I said, "No. This has already been discussed and we are staying until he is asleep." She got a little crappy and said, "Well, with anesthesia things can go wrong and happen fast." I said, "Well, this is his 5th time under anesthesia and I don't think there will be a problem. We're staying." She said, "Fine. But if something happens and I tell you to leave - you need to leave." I said, "Fine." We got him in there and he was put on the table. He did fine. Mommy and Daddy stayed with him and kept him calm. I'm so glad we were able to be there. Such a difference from last time. Then they said, "OK, we are going to make him mad." And they took his "B" out of his mouth. Oh boy. Then they put a mask over his face. Pissed him off even more. But they injected the medicine into his IV and he was out within 5 seconds. Chris and I gave kisses and left the room. It was 1:15pm.

Chris and I went to eat lunch and afterwards we went into the cath waiting room. They called us after about an hour when the caths were in his legs and said he was doing fine. Then they called again about an hour later to let us know they were finishing up. Then again to say he was finished and the breathing tube was out and the doctor would be out to speak to us in about 30 minutes. He didn't come. We got another call saying that Kevin was at the elevators waiting for us so we could go up to PICU with him. We walked around the corner and there he was. Eyes all swollen. But he was asleep and comfortable. They said he was awake until they gave him his "B" back. Then he fell asleep. I looked at the monitor and his sats were 82. That was no different for him. He is usually that high when he's asleep. Sometimes even higher. I thought that the stints didn't work. We went upstairs and they took him back to his room. Chris and I had to wait for the doctor to come speak to us. I thought, maybe his sats will get higher with oxygen and it did work. I had some hope. The doctor finally came to us and said that he was going to see if a conference room was open. Conference room? Those are never good for us. It's always bad news. I felt like throwing up. He got a room and Chris and I went back. He started off by saying that Kevin didn't get any stints. Huh? The doctor said, that this was good news. He said that he was amazed at how much Kevin's pulmonary arteries had grown. There was no need for stints. It changed everything. He had called the heart surgeon in to the cath lab to look at Kevin's pictures. He agreed that this made a huge difference and there was no point in placing stints. The doctor went on to say that he can't promise us anything because he hadn't talked to the other doctors, but he thinks they will go ahead with heart surgery first. And the risks are much lower to Kevin since the arteries had grown. He said that he was sure this plan wasn't going to work, but now that he sees the change, he's thinking differently. He seemed happy and upbeat about everything. I asked about how many heart surgeries he should need. Before we were told 3. He said that probably 2 by the age of 2, then one at teenage years to replace the piece that they will be putting in now and one in adult years. ADULT YEARS!! Isn't he a little miracle?? We all prayed. And He has listened. I went to Kevin's bedside and was thanking God that he is going to give us the chance to raise this baby. That's what I wanted. Doctors started coming in Kevin's room. Loads of them. They wanted to check to see how he was doing. They hadn't heard the news. Then the main heart surgeon came in. He hadn't been at the hospital when Kevin had his cath. He came in and said that he looked at Kevin's cath and believes they can help him. He seemed excited. He said it was still very risky, but Kevin has a 85-90 percent chance of surviving it. Rather than a 90 percent chance of dying. They said they want to do the heart surgery first and his liver should be strong enough to get through it. They are going to place a tube into his heart going from the right side up to the pulmonary arteries. It should relieve all that pressure in the right side of his heart and bring that to almost normal, if not normal. And it should bring his sats up to over 90. If his sats don't come up enough, they will go in and do another cath and cut off the flow to some collaterals that he has but doesn't really need and that should bring the sats up more. What usually kills children like Kevin is the massive pressure in the heart that makes the heart weak and then stop. This tube will relieve that pressure and Kevin should be out of that danger. Then comes the liver transplant. But we don't know when. One thing at a time. After Chris and I spoke to the heart surgeon, other doctors came in and they were speaking to each other. It was nice to hear their excitement and how amazed they were at Kevin's change. They want to operate on Kevin's heart next week. I don't think he will be coming home in the meantime. He is still on antibiotics.

When I was talking to my mother she said, "What if you had listened to the doctors and didn't proceed with the cath?" What a point. Chris and I made the right decision to proceed. I'm so glad we didn't give up on him and were able to find out this wonderful news. Kevin still has a lot to go through - but the hurdles aren't as high as they were before. It's do-able to them now and that makes us feel so much better. We can't help but think about Kevin's future. I asked God yesterday to just get him though this cath. No matter what the outcome - just get him through. We would deal with whatever the results were and we knew it was in His hands. He has plans for this little guy - He must.

A couple of Kevin's nurses were in school yesterday, but they came by to check on Kevin. We were also told when we called to check on him this morning that some nurses came to see him in the PICU last night. They care about him so much. Chris and I had gone down to the 6th floor yesterday to get Kevin's things and let everyone know how it went. Some of them got teary-eyed. They had been praying and worrying for him all day. All of us were. Our faith and prayers helped Kevin. I think God knows how much he must mean to all of us. But we can't stop praying yet!! And we can't stop thanking Him for our gift that He has given us. And Chris and I can't thank you all enough either. We are blessed in so many ways. Thank you all.

I have to go see my liggle butterball now. We're running late! God bless!

Wednesday, October 6, 2004 8:50 AM

He's still doing just fine. His IV is still in and working fine. He will get an additional IV today, but not until after he has been put to sleep for the cath. That should start around 1pm.

Yesterday the priest came to see him and say a prayer for him. Kevin was sleeping in his crib. The priest walked over to his side and Kevin woke up, then threw up. So, I picked him up and the priest came over to my side and put his hand on Kevin's head and started a prayer. Kevin immediately threw up again. He helped me clean it up a bit and then started his prayer - again. Kevin threw up again! It was like The Exorcist. Kevin finally stopped and the prayer was said VERY quickly.

The doctors told me that Kevin has to be taken off the DNR orders for the cath. I had gone over with the cath nurse that anything they cause, they correct. Like an irregular heartbeat. She agreed. But, the GI doctors told me that they can't say that the cath is what is causing the irregular heartbeat so if he is DNR, they can't correct anything that happens in the cath. I told him it was fine. Take him off. I don't expect anything to go wrong so I don't care if he is taken off. But, if something horrible happens, he will be full code which means that, if necessary, he will have chest compressions and his chest shocked to start his heart. But we just won't worry about that. That won't happen.

Kevin fell asleep yesterday about 2:30pm. I didn't feel good so I left early. Yes, I hit all that traffic again! I should have learned my lesson last time. My head was pounding and medication didn't help. Sitting in traffic didn't help either. All I could think about was getting home and taking a hot bath. But how do I get a bath without having Gracie in it too? I told her my bath was too hot for her and it needed to be hot to help my head. She said OK. But she said when it got warm, then it was time for her to get in. Whatever you say kid - just let me get my bath. Well, first her hands were in it. Then her arms. And all of her tubby toys. But she didn't get in! Her PJs had to be changed 3 times because she got them wet. Finally, I knew it was time for me to get out when I was laying there with my eyes closed and she was whacking me on my boob with an Elmo frying pan asking me, "Mommy, are you relaxing? I think you are." Drain the tub....

Well, Chris is ready to go. He is very nervous about today. I called the hospital this morning and I was told the cath nurse had been down to check on Kevin. She said that she didn't want anything to go wrong today. The nurse told me that after she left, they called the intensive care unit and there aren't any beds open for Kevin. She said that they have until 1pm to find someone well enough to come down and take Kevin's spot and Kevin will take theirs in the PICU. It should only be for a day or two. Then Kevin will go back to his regular floor. He will stay on antibiotics for a few days after the cath too. They don't know what they are treating, but they are going to give him a full 2 week course. Hopefully this will take care of his fevers for good. I want to bring him home and keep him home for a little bit.

We gotta go! I'll let everyone know how it went when I update tomorrow. Chris and I will probably not be home until late evening tonight. It's going to be a long day.

Keep him in your thoughts and prayers today!! Our love to all!

Tuesday, October 5, 2004 8:45 AM

Kevin is still doing great. Still on antibiotics and that same IV is still working. Gracie went with us to the hospital on Saturday. I thought we would have to leave early because she would get bored - but she did really well. We hung out for a little bit and then took her to lunch. We went back upstairs and she played with some girls in the playroom for a long time. She had fun. We got to spend alot of time with Kevin. He kept holding his arm out to reach for her. He wanted to grab her hair, her face and her clothes. Anything he could get his hands on. She gave him lots of hugs and kissess too. It was a good day.

When I arrived yesterday, he wasn't in his crib. I freaked out for a mini-second. Until I noticed that the patient advocate was on the other side of his crib talking to the floor. I figured he was over there. Which he was. The nurse put him in a stroller so he could sit up and watch TV. He was doing really well. Until he saw me. Then he whined because he wanted to be held. That was no problem. I could hold him forever. But actually, since he's getting heavier, my arm starts to fall asleep.

He had been awake since 8am and he didn't go to sleep until 3pm. I figured he would be asleep for a while and I have to leave at 3:30pm each day to get Gracie, so I cut out early. Traffic was worse! I made it home about the same time as when I leave at 3:30pm. When I called to check on him at 7pm yesterday, the nurse said he had taken a little power nap and was awake and playing about an hour after I left. And was still awake at 7pm. He's staying awake for very long periods of time now that he's getting older and feeling better.

A GI doctor came by on Saturday. One of the guys Chris and I are familiar with. He said that after the cath, Chris and I can think about how we are going to proceed. I told him that we had already made the decision to go forward with whatever can be done for Kevin. Then I waited for him to give me a screwed up look like some other people have done. He didn't do that. He said that he didn't know we had made up our minds yet, but now that he knew, he was behind us 100 percent. That was nice to hear. I try not to think about anything beyond that cath - because the cath may have results that will make it so we can't go any further. But it's hard not to worry about the cath and what may happen afterwards. I've got so much on my mind that I can't really sleep at night. I get a few good hours in and then I'm awake thinking about Kevin. I even take the sleepy pills to make me fall asleep. I think if I didn't take those I would never fall asleep. I'm yawning right now because I'm typing about it!

Well, I need to get ready. I want to leave by 9am this morning. I will be meeting the hospital priest today. I was thinking about having him come by to say a prayer for Kevin on Wednesday. But before I could ask about it, Barb, the patient advocate, asked me first! She's really good. So, she arranged for him to meet me today. That's just one more person that Kevin will be able to charm.

Saturday, October 2, 2004 5:19 PM

Kevin is still doing well. His IV is still in and working. He has needed morphine maybe once or twice during a 24 hour period for respirations. And he is sleeping mostly through the night. He now weighs 15 pounds 8 ounces! His heaviest yet. He has been gaining weight even while he is in the hospital.

He had an ECHO last week and we got the results today. The pressure in the right side of his heart is increasing a little bit. It is 1 1/2 times higher than the left side. It should be 3/4 less than the left side. But, his heart is still strong. The doctor said that in his condition, the heart would start to weaken with it's squeezing, but his hasn't.

He also smiled today! He's so adorable! He also got a hold of a Twix bar candy wrapper and loved it. It kept his attention for about 15 minutes.

We need to run to the store - it closes soon. Take care everyone!

Friday, October 1, 2004 9:41 AM

Chris was going to the hospital with me today - but he has to go alone. Gracie is still having problems with her ankle from hurting it on the moonbounce 2 weeks ago so I will be taking her to the doctor this morning. She says it doesn't hurt her - but her limp is very obvious. And believe me - if something hurts her - she lets you know. Over and over and over.

Kevin had a good afternoon after I left him yesterday. When I called at 7pm, he was still asleep from when I left at 3:15pm. He had been up all morning since 7:30am until I got him to sleep around 2:30pm. He was exhausted from the IV situation. Oh, I didn't tell you all that part. He lost his IV yesterday morning. The one that took 10 tries to get. It was put back in by the afternoon and it only took 4 tries. As of this morning, it is still working. When the other one failed, his little forearm puffed up and he looked like Popeye.

His cath is scheduled for Wednesday afternoon. The nurse said she doesn't forsee them having any trouble with Kevin. I asked her if the doctor feels confident about what he is doing. She said he can do what needs to be done - but they aren't sure it is definitely going to work. The stints may not increase in O2 level enough to proceed. We'll just wait and see what happens.

I told the GI doctors that if Kevin's IV came out a day or two before the cath - that I don't want another one put in. He can go that long without antibiotics. His fever doesn't come back for 3-7 days after the antibiotics stop. He will need another IV for the cath - but they said they may be able to do that after they put him to sleep. His arms and feet have bruises all over them from all the times they have tried. Plus all the times they have taken blood for cultures. I stopped those too. They got some blood yesterday when they got his new IV in, but I'm sure they will come back negative. How can you have a positive culture when you have been on antibiotics for 5 days? He needs a break from all those sticks. They stick this little guy in places that would make any adult cry. By his ankles, the tops of his feet, in the sides of his feet, his inner wrists. It sucks. But I'm always there to comfort him when he goes through it. The always say that I can step out until they are done. I never do. I need to be there for him while he's going through it. I think it helps him. But it just tears me up inside.

The GI doctors asked me yesterday if we had made a decision. I said that we did and we are going to proceed. They said, "Oh." Then they looked at each other. I didn't pay them anymore attention. I just looked away until they left. I told the nurse that I need to learn how to not worry about what other people think about our decision. They aren't in the same shoes that we are. They aren't seeing Kevin go through this hell every day. If he passes away during surgery - then he won't be in misery for the rest of his days. And that's what he's in right now - misery. He needs this chance.

I have to go. I need to get Gracie to the docs. Hopefully she won't have a fit. I will tell her that she doesn't get any shots today. (But she does need to go back for her flu shot shortly....Maybe I can get her daddy to take her for that. Yeah right....)

Thursday, September 30, 2004 8:29 AM

OK, about the meeting...

There was a meeting with everyone involved in Kevin's care. The hospital Hospice people, cardiologists, cardiac surgeons, GI, liver surgeons, infectious disease experts, the cath doctors, nurses and the patient advocate. I was told about 15 in all. Honestly, I thought the meeting was going to be about Kevin's recent fevers and how to prevent them. I didn't know all of those people would be there. I was called for a meeting after the other meeting was over. Dr. Schwarz was there along with 2 GI doctors, a cardiologist, Dr. Schwarz's nurse (Mary Kay) and Barb, the patient advocate who got the meeting together for us. Dr. Schwarz had another meeting to get to, so she spoke first. She said that Chris and I have to make a decision whether or not to let Kevin live out the rest of his life, not knowing how long that would be. Or to proceed with the cath, then liver transplant and then 3 open heart surgeries to correct the heart defect. She said that Kevin would receive a cadaver liver because with such low chances of success, they will not use a living donor. She said he has a 50/50 chance of surviving the liver transplant. (They also said that the doctors didn't want to give percentages of survival on any of the surgeries because Kevin has proved them wrong before and they can't predict the outcomes at this point.) I said that we were told not even to think ahead that far because if Kevin's pressures were too high, then we couldn't proceed. The cardiologist stepped in and said that they believe that the pressures are low enough to proceed with the transplant. Then I was told that the chances of him surviving the heart surgeries were even less. I cried several times in that meeting. This is such a difficult decision. And we don't have alot of information to go on. They said that many people in the earlier meeting said we should just leave Kevin be and not proceed. Others said they had some hope. Dr. Schwarz and the cardiologist both made it very clear that if we proceed, Kevin will have alot of pain and suffering. That makes me want to stop. But then I think, they can't say that he won't have pain and suffering if we don't proceed. Kevin had to get stuck 10 times the other day to get an IV in place. That's suffering. They can't tell me that he won't be in the hospital every week going through this. To me, that's just as bad. The doctors told me that they can't say how long Kevin would live if we didn't intervene. They said that all of them honestly thought he would be dead by now. Not growing and developing. But he is. So they aren't right about everything when it comes to Kevin. If Kevin survives these operations, he could live to be an adult. We would just love to see that. They also said that if Kevin only had a liver problem, it wouldn't need to be transplanted at this point because he isn't in total liver failure yet. But, it has to be done before his heart if fixed. And his heart is what will kill him. So, Chris and I were leaning towards proceeding. Then, as I left yesterday, Dr. Lau stopped me. He wanted to know if we made a decision. I said something about Kevin having a 50/50 chance and he shook his head. He said that he couldn't put a number on it, but his chances of survival were very slim. My heart just sank. He said that it if it were his child, he wouldn't proceed, knowing all that Kevin has against him. Now what do we do? I cried practically the entire way home (for a second day in a row). Do we proceed? We would be giving him a chance. Even though it's slim. If we don't, he will die. But when? It could be a year. Nobody knows. If we proceed and it kills him, we don't know how much we will be taking from him. But we also don't know if it would be happy times, or mostly sick times. I've thought about all of his smiles we will miss out on if he passes away in surgery. All the little things he could eventually do that make our hearts happy. But if we intervene and he survives, there are many more things that he could do with his life. Chris and I will have to be able to cope with our decision if Kevin doesn't survive surgery. But, we would have to not keep asking ourselves, "what if?", if we don't proceed. I've thought about having to say goodbye to my son when he goes to surgery because I may not be seeing him alive again. How do you do that? I don't know if I could handle it if they come to me and tell me that he has died during surgery. It will be because of our decision. I don't know if I can live with that. This is the most painful thing Chris and I have ever had to go through. I told Chris last night that I wish Kevin could talk and tell us what he wants. Chris thinks that Kevin would want the chance to live.

I want to be able to wrap my arms around my son, whenever I want, for the rest of my life. I can't imagine my life without him.

Chris and I talked last night, taking in what Dr. Lau had said to me. We are going to proceed at this time. We are going to schedule the cath. He will stay in the hospital on antibiotics until the cath is done. Maybe when they do the cath, his pressures will be too high. Then our decision will be made for us. If they are OK, he will be put towards the top of the liver transplant list and we will wait. We can change our minds while we are waiting for a liver if we want to. But I don't think we will. I pray that we are making the right decision. But we know, whatever the outcome, that this little boy has touched all of our lives in the 10 months he's been on this earth. That's one thing I'm sure of.

Wednesday, September 29, 2004 9:42 AM

I'm sorry but I have lots to say, but no time to say it. I am leaving late for the hospital already. There was a meeting yesterday and I've spoken to Chris about what was said. I will fill everyone in later this evening or tomorrow morning about the particulars. But the issue right now is to decide whether to let Kevin die, hopefully as comfortable as possible (but we don't know when that would be), or try to proceed, putting him through more pain and suffering and risking him dying on the operating table. We didn't have a choice before - but now we do and it's a terrible choice to have to make.

Kevin is feeling OK right now, but his IV came out yesterday morning. While I was there, they tried 5 times to get a new IV in. They failed. After I left (crying because I wouldn't be there for him when they tried again), they tried one more time. Unsuccessful. Then a NICU nurse came to try. She tried twice. She succeeded the 2nd time, but it blew after his second dose of antibiotics. Then another NICU nurse came up and tried twice and the IV is still in as of 6am. That's alot of suffering for him. It hurts me so much to see him go through that. As I was getting ready to leave, I started to cry and the nurse told me she would stay with him until he fell asleep and she would comfort him while he got his IV. I felt a little bit better - but I cried the whole way home. That took almost 2 hours in that pouring rain. I have so much on my mind now, it's so draining. I'm tired.

I'm going to leave to see him now. I will let you all know what was said in the meeting as soon as I get a chance.

Tuesday, September 28, 2004 8:51 AM

Kevin is still doing just fine. He played alot with me yesterday. His IV is in the bend of his left arm so when he grabs a toy, he can't figure out how to get it into his mouth because he can't bend his arm. He also got a new tooth! This makes number 4. Two on the bottom and two on the top. But the ones on the top aren't the middle teeth - they are the teeth that are about 2 over from the middle. I don't know why that happened. But at least they are coming in!

Before I left yesterday morning to go to the hospital, I called the patient advocate. She called me back and I told her that Kevin was back in the hospital and we were not going to accept just another 48 hours of antibiotics. Something more had to be done. She agreed. Everyone seems to agree but the doctors. She told me she would talk to the doctors and arrange for a meeting. The meeting hasn't been set up yet - but word got around to the doctors that Chris and I are going to fight them regarding Kevin's treatment. They have given in and they have gotten the Infectious Diseases (ID) people involved. Kevin will have an ECHO this morning to check the valves in his heart. An ID doctor came to speak to Chris and I yesterday afternoon to go over Kevin's history and lots of other questions. (Chris was able to come to the hospital at 1pm from work.) Trying to see if there is any obvious sign of what could be causing his illness. There isn't any from the info Chris and I gave. He said the doctors will be having a discussion today to review Kevin and try to figure out how to treat him. We understand that they can't treat properly if they don't know what they are treating for. That's why he keeps going back to the hospital. Kevin will have other tests, such as CAT scans and other non-invasive procedures to see if they can get some more info. They said they will check him out from top to bottom. Hopefully they will find out what the problem is. We are going to try to get the cath scheduled for while he is there in the hospital. But we haven't had our calls returned.

I'm gonna go get a shower and find the paperwork to our dryer which broke this morning. Furnace yesterday - now the dryer! The fridge will probably be next. No, maybe the car....

Monday, September 27, 2004 8:44 AM

Kevin is feeling better - but still fussy. The nurse told me he received morphine 3 times last night for irritability. One of his favorite nurses has him today. She's really sweet. I spoke to her this morning and she agreed that they need to try a longer dose of antibiotics. She says we need to have a meeting. I called the patient advocate this morning and told her that Chris and I want a longer course of antibiotics and she said she would speak to the doctors this morning. I've been thinking about this so much I'm at the point where I think I will yell at the doctors as soon as they say, "Good morning." I don't want to do that. When we were in the ER talking to the junior doctors Chris made a good point. He said that when we were told that our son was going to die, we were told that Johns Hopkins Hospital would do everything they could to help keep him comfortable. He said, "And this is not comfortable." They agreed. Forty eight hours of antibiotics isn't working - something else needs to be tried. If he is on for 10-14 days and he still gets sick, at least we tried something else. I would hate having him back in the hospital that long - but if I think it will be better for him in the long run - I want to do it. I feel like asking the doctor if they would accept this for their own child. I'll bet they wouldn't.

The nurse showed up last night at 10pm. We called the nursing company at noon to tell them we wouldn't need a nurse. Chris called again after the nurse showed up. The woman said she called the wrong nurse. Why didn't that nurse say, "I'm not on the schedule for tonight." But still - the woman should have been more careful. The nurse from last night will get paid for a couple of hours. Even though she showed up when she shouldn't have, she was still late. She is usually 15-20 minutes late each night. I was going to say something to her last night - but a good time for me to say something didn't arise. I'm going to tell her that when I start back to work, late isn't an option. I need someone here at 9:30. Period. I would never show up for work 15 minutes late each day. That isn't acceptable - so it isn't for her either.

Well, the heating repair guy is getting ready to leave. I need to pay him and get out of here to see my baby.

Saturday, September 25, 2004 3:26 PM

The new nurse came yesterday - 15 minutes EARLY!! I've never had a nurse early!! She was pretty good. Gracie and I were watching her as she got out of her car and I told Gracie she looked cuddley. And Gracie agreed. She's about 50 years old and has 6 children ages 12-30. Very nice lady. I orientated her and gave Kevin to her. He was fine. Until about 2am. He started to cry and didn't stop until 6am. Then he just calmed down to a constant whine. The nurse was wonderful with him. She kept her calm and kept trying to settle him down. I went in several times and I held him at 3am. But she took him back from me after about 3 minutes. He's sick. The fever is back and not really breaking and morphine has been given every 2 hours with no relief for him. We are leaving for the hospital in about 10 minutes. I think this makes the 6th time since the beginning of August. This is ridiculous. They need to do something. I feel like a broken record here. The nurse called a few hours ago to check on him. I thought that was nice. Nina is holding him now. She is taking care of him so I could catch a nap since I'd been up since 2am. Very sweet.

Well, I just wanted to update you all and I will let you know tomorrow if he gets admitted or not. But probably so.

Friday, September 24, 2004 8:55 AM

I didn't update yesterday because in the spare time I had - I slept! The new nursing company started Thursday night. The nurse was supposed to be here at 8:30pm, which is one hour early for orientation. We received a call at 8:30pm, but it wasn't her. Chris answered the phone and it was someone from the company telling us that the nurse was tired and was at home resting and she would be there around 9:30pm. We weren't too happy about that. Chris kinda, sorta went off. But not too badly. He said that it was a poor way of starting off with a new client, especially when we told them the reasons for leaving the other company. If the nurse was sleeping and she lives an hour away - she wouldn't be here by 9:30pm. After he got off the phone with this woman, he called the nursing company to leave a message with someone in charge. Luckily, the Director of Nursing answered the phone. Then Chris gave her a piece of his mind for twenty minutes. Hopefully something like this won't happen again too soon. We understand things happen - but the first night? But, to make a long story short - she showed up at 9:45pm. Not too bad. She was nice. Jurea is her name. She will have 2 nights a week, Antonia (the poopy in the laundry basket nurse) will have 4 nights a week and Martina will have 1 night a week. She comes tonight.

Jurea didn't seem like an idiot and she had small children of her own. I oriented her until 10:45pm and then handed her over to Kevin. He knew that she was someone new. You could tell by the way he stared at her. He gagged and threw up while I was there in the room. I let her handle it. I'm glad he did, that way she could see what it was like and I was there to tell her how to handle him. He slept until about 2am - then he was up alot until it was time for me to get up. Crying, gagging, pooping. So I was pretty tired the next morning. I had slept with an ear open because Jurea was new and I wanted to make sure she was doing OK. Last night we had Antonia again. She is our regular nurse. She knows Kevin and he knows her. He slept really good last night. I got up at midnight for a pee break (he was sleeping) and went back to sleep until almost 5am, when he started to cry. That was very good sleep for me. I also had spoken to Antonia about the poopy laundry. I asked her that if she didn't feel like she should rinse it out, then just put it in the tub or the sink so I could take care of it in the morning. I told her that putting it in the laundry stained other clothes that were already in the basket. She apologized. I'm glad I said something, because I don't want that to happen again.

Maybe he slept well because he had a nice tubby before bedtime. Chris said that he was falling asleep while he was getting him dressed after the bath. Kevin had gotten sick as Chris was getting him ready for the bath - so he was thirsty. He was trying to eat the washcloth and lick the water off of his hands. I had a cup of water at the side of the tub - but I didn't know how to give it to him. So, I gently tipped the cup towards his mouth. I didn't want to have any water spill on him because it was very cold. He was hysterical. He kept dipping his tongue into the cup and lapping up the water. He has a pretty long tongue. Finally Chris was able to get a syringe so I could give him drops of water and not have to work so hard for a drink.

I have left a message for the cath coordinator to give me a call. That was 3 days ago. Maybe I won't hear from her until next week to make an appt. I'll call again after Monday if I don't hear from her. But Kevin is still doing great. Happy and playful (and sleeping).

We pray he keeps feeling this well!!

Wednesday, September 22, 2004 9:13 AM

Well, the new nursing company starts tonight. I hope this goes well. The current nurse we have (Antonia), will be switching also. She is good with Kevin - but she has some flaws. She wanted 4 nights with the new company, but I think she is only getting 2 or 3. Chris wants me to speak with the company, but I told him that we need to give the other nurses a chance. Maybe they will be better than her. Kevin made a mess last night (poopy, pee and throw up). And when I just went to do the laundry, I saw that it was on blankets, cloth diapers, his outfit, his socks. Everywhere. And the nurse didn't even bother to rinse them in the sink. She just put them in the laundry basket - soaked in urine and FULL of poop. I'm glad I decided to do the laundry this morning or that would have been even worse. I ended up throwing some of it in the trash because I know the stains won't come out. Hopefully it will come out of his nice blanket. It doesn't take much effort to rinse crap out of something. Gimme a break! I'm going to say something to her about it when she comes back. But overall, he had a good night. His day went well yesterday too. He's feeling good!

Nina watched Kevin for me yesterday so I could run an errand and pick up Gracie from school. It was funny because another mother came up to me as I was watching some kids play at the playground. She said, "This must be the other Two's class." I said yes, because I didn't see my daughter there. She asked which child was mine. I told her, "Gracie. She stands out. She's probably the biggest kid in the class." She said, "Oh no! My daughter is the biggest in the class. She's huge. She's the size of a 3 year old. The doctor even told us she was big" and blah blah blah. I said that was good because then Gracie has someone her own size to play with in the class. She acted like it was a contest or something. Fine - your kid is bigger. What do I care. Then her daughter came out. A second later, Gracie came out. Gracie was about 6 inches taller than this "gigantic kid". The woman looked at her and then at her kid and didn't say a word. I thought it was kinda funny.

Back to the baby....he is SO alert these past 2 days. He is addicted to the TV - but that doesn't bother me. He plays too - but he can do whatever he wants to at this point. He's "talking" and smiling and not crying nearly as much. We enjoy him more when he's like this. We haven't scheduled the cath yet - it would be nice to be able to fit him in next week since he's doing so well. But I think it will be later. That gives me more time to add some chunk to him. You should see his huge thighs - it's adorable!

I'll have to get some new pictues taken and posted for you all to see. I'll work on that!

Tuesday, September 21, 2004 8:33 AM

Kevin seems to be doing much better. He had a really good day yesterday. He's smiling and cooing more and wants to put everything that he can get his hands on in his mouth. He's having episodes of throwing up - but it's still mostly mucous.

We've had a nurse these last few nights. Actually, it's the only nurse that the nursing company has for us. We are switching to the new nursing company tomorrow. This current nurse will be switching over to the new company and working with Kevin 4-5 nights a week. So I only have to train 1-2 more nurses. Chris will be calling the current nursing company to let them know we won't be needing them anymore. I'm sure he'll enjoy that.

We need to meet with Dr. Uma again to keep Kevin on the Waiver Program with the State Dept. I'm not sure how this will go in regards to her payment. Hopefully it won't be like last time. She might make me bring him in so she can examine him and get paid for the appointment. I don't want to take him someplace where there are extra germs. I'm not going to worry about it until we get things set up.

The new nursing company is coming in a few minutes to go over everything with me and assess Kevin. I'll let everyone know how things go....Take care!

By the way, the cardiac cath has not been re-scheduled yet. The cath lab is closed this week and full next week. So it won't be for at least 2 weeks. I just hope we can keep him well and fever free for that long!

Sunday, September 19, 2004 4:50 PM

Kevin's first days home so far have been pretty darn crappy. As soon as he came home on Friday - he was miserable. He wouldn't (or couldn't) rest. He kept whining and fussing. His fever hadn't come back, but his diapers weren't very wet so he was getting dehydrated. I called the hospital to ask about Pedialyte. I had put him on 50/50 mix of it with his formula. The doctor said it was OK, but only for 24 hours. I was worried about Friday night. I hadn't heard about getting a nurse yet and I was worrying because it's hard to take care of a baby being that fussy for so long. Especially without any sleep. But, luckily we got one. Friday through Sunday night. But actually, Kevin slept well for her. He wouldn't lay on his back all day, or even that night. But she got him to sleep on his pillow on his tummy. I had her watch him in the living room. It's easier to watch him there when he's not feeling well.

Then, yesterday, he was fussy in the morning. But we layed him down to sleep around 10am and he slept until the afternoon! He was exhausted. Then in the evening he seemed fine. He pulled out his NG tube and that had to be replaced. Then he pulled it out again this morning - but not all the way. I could still wiggle that one back in. His fever started again last night and a bit today - but nothing too high. Only 100.3 or less. It's being controlled with Advil. He seems to be in a pretty good mood most of the time today. He's alert and playing with things. His throwing up seems to be under control for now also. He still throws up, but it seems to be mostly mucous. He's got a cold now because we've been having to hold him down to suck the boogies out of his nose. That REALLY makes him angry. So, we'll just keep our eyes on him and see how he does. Hopefully he will get through this fever stuff and get back to the way he used to be. That would be nice. I think I hear him crying now...better run to help daddy!

Friday, September 17, 2004 10:05 AM

He's coming home today. I'm leaving as soon as I enter this journal. He's feeling much better, just like usual. They blamed this one on Gracie and I. Gracie had a cold and I developed a cold Tuesday morning. But what about those other 4 times? They still have no idea. They aren't going to do the ECHO because it's dangerous for him to be under anesthesia. I asked about giving him the ECHO in the cath lab before his cath is done. That way if they find growths in his heart from Endocarditis, they won't proceed with the cath. They agreed, but I don't know if it will be coordinated. If he gets the cath and he had Endocarditis it could kill him. I want them to make sure he doesn't have it first. The doctor told me that we could be back soon - there was no way for him to tell. Chris and I are irritated about the whole thing. This is no life for Kevin. Going to the hospital every week. It affects Kevin, our family, our jobs and even the nursing situation. (I'm not even sure we have a nurse for tonight. I requested one yesterday but they didn't call me back.) We are losing another nurse because she says it's not worth her time because it takes her too long to get here and she doesn't make enough per hour. Don't complain to me about the money you are making. I think that's unprofessional. I'm just the customer. Plus she's always late. Heck with her. Hopefully we will be starting with the new company soon and things will run better.

Kevin had a head CT scan yesterday morning. They were wheeling him out of his room in a wagon when I arrived. He was so cute. And as the wagon went by me, he turned his head to watch me. I went with him and he kept turning to see if I was still there. They were taking a CT to check his sinuses. They wanted to check for sinusitis. I said that he better not have it because when this whole thing started on 8/6 I asked about sinusitis and I was totally blown off! It was negative.

Well, I'm gonna run and go get my little stinker! Things will be a little crazy here tonight getting him settled back in. Gracie is excited that he's coming home. Us too.

Wednesday, September 15, 2004 8:29 AM

Kevin is starting to feel better. We checked on him last night and this morning. His fever is gone now and he hasn't needed morphine since 6am yesterday morning. He's comfortable. I think the antibiotics are working for him. I can't go see my baby today - Momma's sick. I could wear a mask, but it's hard to take wipe your nose wearing one of those. I don't want to take the chance of giving him something else. He's in good hands though. I know the nurse taking care of him and I'm more comfortable knowing he has someone familiar with him and who will take extra good care of him. I asked her to please hold him if he woke up and was fussy and she said of course she would. She said that he threw up alot last night. Just a lot of gagging and them small spit ups. The night nurse said that the laundry department was going to come after her because she went through alot of sheets and cloth diapers. He's better this morning, but he wakes up to gag and spit up. Then he goes right back to sleep. I feel bad about that because if I was there I could help him immediately. A nurse gets busy and isn't always there and he spits up on himself, and sometimes has to sit in it for a little bit until they notice. I need to stop or I'm going to talk myself into going today, when I really shouldn't.

I'm going to ask the nurse to tell a doctor to call me at home today. Hopefully they will. And hopefully they will have something to tell me. But I doubt it...

Tuesday, September 14, 2004 2:38 PM

No cath. That poor baby's day just got worse as it went along. I shouldn't have kept him home for as long as I did. But I was thinking that the last time he went in he started to feel better shortly after his fever broke. Maybe if I could get rid of the fever he wouldn't have to go to the ER. I couldn't get rid of it. At first the Advil would work, but only for a few hours. Then his fever would return, and I couldn't give any more Advil until he was due for it. Then, the Advil wasn't working at all. He just more and more irritable. He only slept for about 30 minutes yesterday. Other than that he was wimpering and throwing his head back. Chris and I left the house at 9:30pm to take him to the ER at JHU. I had called the peds GI on call and told him we were coming. I asked him if he was familiar with Kevin and he replied, "Of course." I hadn't met this doctor - but he obviously was aware if our little guy. We arrived at the ER at 10:40pm. It was packed! But Kevin got to go back within 10 minutes of arriving. We had to wait a while in the back before anyone got a chance to see him. He got an IV and blood drawn. He was still so miserable and so tired, but he couldn't rest. We asked for Morphine and that seemed to help him. It hadn't helped him all damn day. Maybe since this was IV form it was more effective. Chris was exhausted so he layed down to rest. Kevin and I had to go for some X-rays. When we got back, Kevin was able to rest. I didn't want to bother Chris, so they got Kevin a nursery bassinet (like in the maternity wards) and he went to sleep. We stayed in the hallway. Kevin was just killing my back. (By the way, he was 15 pounds when he was admitted. That was with a onsie and a wet diaper - but he's getting up there!) Since Kevin was resting, they wanted to hook him up to the monitor to get a sat on him. The portable monitor was giving a low reading (62) and they wanted to give him oxygen. So we went into the room across the hall from Chris. That sat monitor gave a reading of 72-74 - so he didn't need the oxygen. Then they wanted a urine cath. I tried to talk them out of it. They had started his antibiotics and he had a cath last week and it was negative. They made a phone call and decided it had to be done. I stayed with him. They had trouble. After what seemed like 20 minutes (but was probably only 4-5) I made them stop. He was crying and I'm sure that thing hurts. I said, "Stop. You're done." The doctor said, "But we didn't get it in yet." I said, "He's been through enough sh*t today and he's had enough. You are done. He needs a break and needs to rest." She was just a little irritated - do you think I care? They had collected urine in a bag so they can culture that. If that comes back negative - there is no reason for doing a cath. If it's positive - then they can try again. But I'm pretty sure it will be negative. While I was talking to her and a couple of other doctors, the nurse walked in and asked when he would be ready. The doctor told her that they hadn't written for him to go upstairs yet. The nurse said, "Well, you see, they really, really like Kevin upstairs and they want him to come up. Now." The doctor said, "Oh. OK. Five minutes." That was 4am when we got Kevin to his bed on the 6th floor. We were there for another 40 minutes going over things and making sure he was comfortable. His temp was taken again and it was still 104. The Advil still wasn't working for him. I asked the doctor about it and she said that as long as he was resting - she wasn't going to worry about it. Just give him Advil when it was due. When I called this morning his fever had go way down, but he still had a slight one. They said he was feeling much better. They said he sounded congested and moved him to another room and took a culture to test for RSV. It isn't even RSV season yet. I think that was a waste.

Chris and I got home at 5:45am this morning. I slept until about 8am then on and off for a couple more hours. I called the hospital early. I was told in the ER that they were thinking about doing an ECHO for Kevin because maybe he does have Endocarditis. So they shut off his feeds and said they would call me for consent. Kevin would have to be sedated for this ECHO. He would need a breathing tube inserted and then they would put a scope down his throat to look at his heart from the inside to see if they find any growths on his heart from the Endocarditis. When I called this morning, his food was back on and they were putting off the ECHO for now. The ER doctor was telling someone on the phone last night that they need to figure out what is going on because it is frustrating for Kevin and us to keep bringing him back to the hospital each week and not getting a diagnosis. Which it is. I'm glad someone there realizes that. This is no kind of life for him. He suffers every day. I don't understand why he is sick now and he was fine for almost 4 months here at home. They need to figure this out!

I'm not going to the hospital today. I have a sore throat. Chris can't go because he has an appt this afternoon. The nurses assured me that he is resting comfortably and he'll be OK without us there today. I feel guilty though. But I'll be there tomorrow (with a doctor under my arm in a headlock telling them to get their crap together!) I also think that once he starts to feel better (and if he doesn't have Endocarditit), they should do the cardiac cath while he's there. Instead of bringing him home first. Just get it over with.

I have to go and grab some breakfast (at 2:30 in the afternoon). I'm feeling kinda woozy. Take care everyone and I'll update tomorrow!! Either from home in the evening or the hospital that afternoon.

Monday, September 13, 2004 9:48 AM

Busy weekend - and stressful. Chris, Gracie and I went to Chris' company picnic on Saturday. Mom and Dad stayed and watched Kevin for us. He had a slight fever that morning - but it broke and he did well for them. Gracie had lots of fun at the picnic. I think she is going to ask Santa for a moon-bounce for Christmas, or as she calls it "the bouncy-bounce". I'll tell her that one won't fit in his sleigh. She would get in it and play, but once there were too many people in it she would get out. She'd say, "There's too much people in there mommy. I'll come back later when it's my turn." Chris and I took turns taking her back. She probably went in about 8 times. The last time was towards the end of the day and there were some older kids in there, about 12-14 years old. Just 3 of them. I assumed that when she got in they would be careful because they were old enough to know better. I assumed wrong. It only took 2 minutes before Gracie was crying and getting out. They bounced too close to her and she twisted her ankle. Luckily it didn't swell, but she couldn't walk on it for the rest of that evening because it would give out. Then she limped a little bit on Sunday. She's doing much better today.

We didn't have a nurse on Saturday night. Kevin was uncomfortable and very cranky. I ended up bringing him into the living room and stayed with him on the couch all night. The next day I needed some rest. Mom helped out in the morning - but Gracie wouldn't really leave me alone. But I got a nap in the afternoon which was much needed. Then Kevin started having problems with gagging and vomiting. He wouldn't throw up alot, but it was constant. It went on and on for a couple of hours. He was exhausted, but he couldn't rest because he couldn't stop vomiting. It was stressful for Chris and I. The nurse had called and said she would be late (again). It irritated Chris because she won't say where she is or when she would arrive. Chris asks where she is so he could figure out how long it would take her to get to the house - but she won't say. She said she left her house at 8:15pm in DC, but didn't get here until 10:15pm. She told us that it was too much for her and too hard to get here. She said she asked the company for a raise and they told her no. So she said she wouldn't be coming anymore. She said she liked working with Kevin and us, but it wasn't worth it for her. Fine. She was only once a week anyways. Moving on...I had her watch Kevin downstairs. It would be much easier because of all the gagging. It's easier to get to him. But he didn't gag at all. He didn't throw up once last night. He had a fever too, but that broke with Advil that I gave him at 10pm. She said he did well. Since she arrived late I re-set my alarm to get up later. She woke me up at 6:25am and told me she had to leave. I said I thought I had more time since she arrived late. She told me that she couldn't stay and she had to go. I've placed a call in to a new nursing company this morning. I'm going to switch if they can get me quality people to watch Kevin and who can be on time. Chris and I are getting fed up with the current nursing company.

So, since he had a good night, I thought he would have a good day. NOPE. He is absolutely MISERABLE! Fever and irritable. (But no vomiting.) I called my mother this morning because I needed help. I was on the verge of tears. It's hard having a child that you just can't console and you know they are hurting. I'm not sure about the cath tomorrow since he's like this. I left a message for the cath coordinating nurse to call me. We'll see how he does in the meantime. Mom got him to sleep at the moment. He needs the rest. We just pray that he gets over this and can move on.

One last thing - Chris' co-worker lost his two children while on their way to the company picnic Saturday. They were struck by a car fleeing the police in DC. His family needs our prayers now too. Chris and I have had to think about losing our child - but we haven't had to deal with it actually happening. I can't imagine losing both of my children in such a horrible accident. Even with what we are going through - I can't imagine his pain. I've cried thinking about him and his family's loss. You never get over losing someone, you just get used to them being gone. Please pray that God helps to ease his suffering in this time of his life.

Thanks everyone. I'll keep you all posted on Kevin's progress!

Thursday, September 9, 2004 8:50 PM

Kevin is home and doing just fine. It didn't take us long to get discharged this morning. We were out of there in less than an hour - our fastest discharge ever. All the nurses were sad to see him go, but I told them we would be back on Tuesday (for his cath). Hopefully things will go well enough after the cath that he will get admitted to the 6th floor rather than the 7th floor PICU (like with his previous caths).

Kevin has thrown up a few times since being home - but it's been worse so I'm not worried. It's just a pain changing his clothes so many times. A bib doesn't help because he misses them and it goes down the side of his neck. I had to change my own clothes since we've been home because he pooped on me. That means he loves me.

Well, I'm gonna go get that little stinker into bed. The other little stinker is already asleep in bed. It's pretty early for her. Maybe school is wearing her out. I know today wore me out so I'm close to getting to bed myself. I just have to wait until the nurse comes at 9:30pm and I give him his last meds tonight.

I'll update tomorrow (if Kevin gives me a break!)

Thursday, September 9, 2004 8:30 AM

Kevin had a really good day yesterday. After his IV antibiotics dose ran I asked to have his disconnected from the monitors so I could take him to the playroom. He had never felt good enough to go there. He needed to get out for a little bit. And the few toys we had for him at his crib were starting to bore him. He's really staying awake ALOT now. He only slept for 20 minutes while I was there yesterday. I wanted to wear him out so he would sleep when I left. So I carried him down the hall pushing along his IV pole because his food pump was attached to that. We stopped at the main nurses station because as we walked towards it you heard about 12 women shouting his name. They love him. But all he did was stare at them like they were idiots. He has that look about him most of the time. Like everyone has two heads - but he's a doll. Then we pushed on to the playroom. It's pretty colorful in there. As soon as we walked in his head was jotting from side to side trying to take everything in. We played with some toys while I held him on my lap, but that got kinda hard, trying to hold him, the toy and to push whatever buttons on the toy to make it work. Then I saw that they had covered gym mats on the floor and on the wall next to them was a huge mirror. So we went over and sat there. I sat him up and I only had to hold his shoulder to keep him from falling over. He was hysterical. He would only take his eyes off of himself to look around at the reflection of the playroom - then he would look at himself again. We stayed for about 30 minutes and played. Then I started to wonder how I was going to get MYSELF up off the gym mats. I was thinking me may have to stay all day!

I took him back to his room and tried to get him to nap. He was tired - but he was fighting it. Then an anesthesiologist came by to speak to me about the cath procedure on Tuesday. kevin wanted to see him so I sat him up and he just stared at the guy the whole time. We had to go over Kevin's history and blah blah blah. I don't think there will be any problems. I try not to think about the cath, because it just makes my stomach upset. I'm going to be a wreck on Tuesday. Anyways, shortly after he left it was time for me to go. I got Kevin to sleep before I went, which makes me feel better. I asked the nurse to give him water by syringe if he got fussy. He laps it up like a puppy. Poor kid gets thirsty and he never gets anything by mouth. Hopefully that will all change one day and he can eat and drink normally.

They said that he had a good night and was just a little fussy this morning. He's only been getting morphine once or twice during a 24 hour period for respirations which is really good. My dad and I are going to get him this morning and we should be home by early afternoon. I need to go make some preparations for him for when he gets home....Take care everyone!

Wednesday, September 8, 2004 8:59 AM

Kevin had a great day yesterday. He's feeling and acting wonderfully. I called this morning and they said that he was in his crib playing. We spoke to the GI doctor yesterday and she said they are going to treat him with IV antibiotics for 48 hours and if his fever didn't return, he could go home. His last dose is 7pm tonight but we can't bring him home that late. It takes several hours to get discharged and we would get home way too late. There is alot to take care of with Kevin when you get him home. She said we could get him on Thursday morning, which worked better for us. Dr. Lau also stopped by. He said he was going to call me that morning, but he had to check something in the computer first and saw Kevin's name. He said that he hasn't spoken to us about the transplant because everything depends on the outcome of the cath. There are several things that need to be in Kevin's favor to determine whether or not we can proceed. The main thing is the pressure in his heart (which the cath doctor told me otherwise). If the pressure is too high, then the pressure going to his new liver will be too high and the liver won't be able to heal after transplant. Chris and I understand that we need to only concentrate on the cath right now and nothing beyond that, because nothing more may happen. His cath is still scheduled for the 14th of this month. We just pray that he gets through it OK and recovers easily. He is such a sweet little guy. He's come so far. One of the cardiologists stopped in to speak with us too. She hadn't seen him since February or March. She was amazed at how well he was doing and how big he got. She said that he really fooled everyone because they thought he wouldn't do this well. He's tough, that's for sure.

I bettter run to go see him now. Thanks everyone!

Tuesday, September 7, 2004 8:49 AM

Kevin was doing pretty good for his first week home. The throwing up really slowed down and he didn't even throw up once yesterday. Sunday night we didn't have a nurse but Kevin slept pretty well. When he woke up at 6:30am he was fussy. And he stayed fussy. He wouldn't stop crying for any period over 15 minutes. And even then he was whiny. He developed a fever and it wouldn't go down with Advil. We gave him Morphine, his Methadone dose and Pentabarb. But he wouldn't settle down. He seemed to be miserable. Just like 4 weeks ago. So...he's back in the hospital. Our neighbors took Gracie for us and Chris and I left a little after noontime to take him to the ER at JHU. Chris and I figured he would just get worse if we kept him at home and we should get him in. We were in the ER for almost 10 hours before he was admitted. His blood levels came back OK and we thought they were going to send us home. But the GI team wanted him admitted for 24 hours for observation (with no antibiotics) because his temperature wouldn't come down. Fine. Then a nurse came in to start his antibiotics...We told her that he wasn't going to be on them and she said that GI changed their minds. So, since he's on antibiotics we don't know how long he will be there. Two days, five days? Maybe even come home before 2 days. I don't think they even know. The nurse said he had a good night last night and he only needed morphine once (that was when Chris and I were still there at 9pm). I want to get to the hospital by 10am when they do their rounds so I can hear what they have to say. With this horrible weather I'm sure it will take me over an hour to get there so I'm not sure I'll make it in time.

By the way - Gracie starts pre-school today! Nina is taking her. I would have liked to take her, but I need to leave before then, plus she needs to get used to Nina taking her every day. (I don't know what we would do if we didn't have Nina and everyone else who helps us out!) We are lucky in that aspect of our lives.

Well, I'm gonna scoot out of here. Oh, the heart surgeon responded to my e-mail. He said that the cath is to increase Kevin's saturations for a possible liver transplant and that is the main goal for now. The possibility of repairing his cardiac defect is still not ruled in or ruled out. They have to see how he does after the cath and transplant. His anatomy is very complex and only time will tell if they will be able to proceed with the cardiac repair. He said it is very hard to be sure that his heart will be amenable to repair.

So, I guess we just concentrate on him getting better now and then getting through his cath without any complications. I will probably talk to Dr. Lau while Kevin is in the hospital.

Thursday, September 2, 2004 4:56 PM

Okey dokey....I have a few minutes.

Dad went with me on Monday to pick up Kevin. He had been throwing up a bunch the previous night and that morning. So they had cut off his feeds and they weren't going to release him until they thought he was doing a little better. I had the nurse page the Cath Coordinator to get Kevin's cath scheduled while we were there. She scheduled us for September 14th. He is the only one scheduled that day because the cath is extensive. She said that Chris and I needed to speak with the doctor before the cath and asked when we would be back for any appointments. We don't have any. I asked if it could be over the phone. She said it couldn't, it had to be in person. She said that the doctor was in a meeting but maybe he could come up in about an hour. I told her that Chris wasn't with me and asked if he could speak to just me. That was fine and he came up eventually. He was kinda a jerk. The first words out of his mouth were that he was very skeptical about this whole thing working. My heart sank. He was negative and his bedside manner had much to be desired. He was talking to me as if I had been to medical school myself. I understood alot because of learning about Kevin's conditions these past 10 months - but still a little confusing. He told me of all the risks for Kevin from the cath. Lots of risks. But I think he can pull through. I'm pretty sure we are going to proceed. I have to talk to the liver surgeon and the heart surgeon first. I need to know what their thoughts are. I know from the past that if they don't think they can pull this off, they won't try. That's why they didn't intervene back in March and labeled Kevin as terminal. I am going to send them both an e-mail to see what their thoughts are. I figure an e-mail would be easier than trying to get 2 busy surgeons to call me back. If they feel that Kevin has a good chance - we will proceed. We have to give Kevin a chance. He didn't have a chance before - but now he does.

Kevin has been doing pretty good since he's been home. He did well his first 2 nights home. But he threw up 4 times last night. Luckily we have had a nurse the last 3 nights. We don't have another one scheduled until Saturday night. We'll get by. I figured that it would be easiest for me to sleep on the couch with Kevin. Just as long as Gracie stays in her bed. But we do need to get some sleep because Gracie has her nursery school orientation tomorrow. (I'm a little nervous...)

Well, I have to run. I'll let you all know what the doctors say and how Gracie does tomorrow!!

Thursday, September 2, 2004 9:10 AM

Sorry for the delay. Our home computer is pretty messed up and I can't update from home. I am right now, but it has taken me 10 minutes to get to his internet page. So I will be updating later this afternoon from Gan's house. Kevin is home and is doing OK. I'll fill everyone in this afternoon!

Sunday, August 29, 2004 8:49 AM

I had just spent 40 minutes updating his webpage and when I went to check my entry I lost the entire page! I'm upset about it - but things happen. Chris and I are getting ready to leave for the hospital now so I can't re-type everything. In a nutshell - Kevin is doing much better. He will be coming home tomorrow! I'll try to update his page on Monday, but it takes forever to get discharged so it may not be until Tuesday.

(I can't believe I lost all that work! Grrrr!)

Friday, August 27, 2004 8:48 AM

I don't have much time this morning. Chris got his check card and credit cards stolen so I've been on the computer this morning trying to help out with that issue. So far he has had his checking account emptied by them using his checkcard. Obviously the vendors aren't checking the signature on the card when the thief signs for his/her items. Ya know - like we didn't have enough crap to deal with already...

I have called to check on Kevin and I was told he had a good night. The nurse spaced the Pentabarb out further rather than giving to him every 2 hours and it seemed to work better for him. He is resting peacefully at this moment and he slept most of the night. His weight is now at 14 pounds 3 ounces, but that is with an IV and armboard attached to him. But at least he isn't under 14 pounds anymore.

A doctor came in yesterday and asked me if I had any questions. I told her 'No'. She is one that always gives me incorrect information so I'm not going to bother asking her anything anymore. The rotation has also changed so Kevin has a new attending physician. I had her paged yesterday because Kevin has had more congestion and mucous so I wanted her to check him out. She said that if it was a cold they couldn't do anything for him. That's fine, but what about the pneumonia? Can you check to make sure that isn't a problem? She said if that was done and it looked like it was in the same area then that wasn't the problem. I said, "But if it's larger or has spread to a different area that is a problem. Could you please just check to make sure?" So, they got a chest x-ray. When I called to check on him last night the x-ray had come back and the pneumonia was practically gone! So, I guess he has a cold. A hospital isn't a good place to be because there are so many bugs going around. He coughs alot and it wakes him up. But at least he's getting some rest now.

I'm gonna sign off so I can get out to the hospital. Bye everyone!

Thursday, August 26, 2004 8:35 AM

Chris said everything went OK at the hospital yesterday. Same old stuff. Kevin sleeps alot and when he's awake he's cranky. He pulled his NG tube out yesterday and had to have it put back in. He's never done that at home, but he's done it 4 times in the last 3 weeks at the hospital. Maybe he's just getting old enough that he has the coordination to do it. Or it could be because when he's upset he grabs at his face now and just catches it.

Chris told me that he spoke to the doctors yesterday and they seem to know that I'm frustrated. He said they didn't come out and say it - but from what they were talking about, they knew. He didn't tell me exactly what was said. But at least they know. When I end up grabbing them around their little necks - then they'll really catch on. Just kidding. But this is really getting to me. I don't even want to talk to them today when I go in. I was talking to the nurse last night and she agreed that Kevin isn't himself and that something is making him uncomfortable. He should be a happy little baby - but he's miserable. I don't want to bring him home hopped up on drugs to keep him asleep. That's no way to live. For him or us.

I'm gonna run off to the hospital now. I miss my little guy.

Wednesday, August 25, 2004 9:00 AM

Kevin is about the same. He still isn't back to his old self, but he isn't as bad as he has been lately. He's still on the pentabarb every 2 hours to keep him comfortable. So he sleeps alot. He fell asleep on my shoulder yesterday which was nice because since he hasn't been feeling well he won't do that. I spoke to a doctor yesterday morning. She said that they are going to take him off the antibiotics and take cultures for 3 days (again). I got frustrated. I asked her to explain to me why they needed to do that since the other cultures were negative. Why can't he just be treated for a couple of weeks to get rid of this bug that he has? They don't know what they are treating him for so they don't know what to do. I think it's obvious that he doesn't have the endocarditis if his chances of having it were slim in the first place and all the cultures are negative. I think they are beating a dead horse. She couldn't explain to me why they are doing it again. I think I frazzled her a little bit with my questions. She told me that someone else would be by to speak with me. He showed up while I was walking down the hall to leave to get Gracie. I went over everything with him. He told me that they need to make doubly sure that Kevin doesn't have the endocarditis. I think they are wasting Kevin's time and screwing with him because he isn't being treated. This is the 3rd time they will have taken him off the antibiotics. I asked about having Kevin on antibiotics for a 2 week course. He told me that either they remove him from them and do the cultures for 3 days or they will automatically treat him for endocarditis with a 6 week course. Which, by the way, could be bad for Kevin because he could develop a fungal infection which would kill him. He told me that he can understand my frustration. I said, "No you can't." He didn't have a come back for that. How can he understand? Where is his child? Not in a bed next to my son.

I left pissed off and upset. Then the jerks out on the highway were getting to me. Some woman came into my lane because she was too busy dialing her phone going down the road at 75 miles an hour. I had to get off a couple of exits early just to get away from the tension. The rest of the ride home was peaceful.

Chris is going to the hospital today. Hopefully he can get the doctors to change their minds. They don't always know best and I have proven that to them more than once. More than twice! When I called this morning to check on him the nurse said that the doctors had been in and they were talking about taking him off the antibiotics. She said that they needed to wait until his parents got in so they could talk to us about it first. She's good. She also agrees with me that they are not making the right move. If cultures are negative - then they're negative.

I'm glad I'm not going in today, but I'll miss my baby. He will be in good hands with his daddy. Hopefully we will get somewhere today with a decision. But I tell ya, if they take him off for 3 days and he gets a fever again and their cultures are negative - I'm going to have to hurt one of them. They are getting momma bear angry! Grrrr!

We'll keep you posted!!

Monday, August 23, 2004 8:36 PM

When I arrived on the hospital ward this morning one of Kevin's doctors stopped to talk to me. She said, "So, you know that Kevin spiked a fever last night..." I said, "No." She proceeded to tell me that he spiked a fever at 3am and they stopped his feeds and put a new IV in and started the antibiotics back up. BUT...the cultures for the endocarditis are still negative so far. His last culture was drawn this morning. I went back to see him and he was asleep holding a toy in his hand. The position he was in looked very uncomfortable, but that's how he wanted to be - so I left him. He woke up shortly after and I held him. He was OK for a little while, but then he got pretty fussy. Nothing was making him happy. He whined and whined for over an hour. You could tell he was very sleepy - but he wouldn't settle down enough to get to sleep. I asked the nurse for some pentabarb which would help with his irritation and get him to sleep. It finally worked. I had layed him at the bottom of his crib on his side and patted him on the hiney until he fell asleep. He was still in that position when I left almost 4 hours later. I told the nurse to keep the pentabarb coming every 2 hours so he would stay asleep. It isn't good for anybody when he is awake and fussy. Not him and not the nurses. I called at 7pm and he was still sleeping. I was told that his feeds were going to be held until his respirations slowed down. When I came back from getting my lunch today, they had put him back on oxygen because his respirations were high. But from my experience with Kevin in the past, putting him on oxygen just makes him breath faster. Plus his sats were getting too high. So I took him off the oxygen. He did fine. The morphine kicked in and his respirations got back to normal. Then I had the doctor paged to see if his feeds could be started. He came by and said it was OK, but if his respirations got high again, they had to stop. He doesn't want him to aspirate. That decision was fine. It was a start. We started his feeds at 20 an hour and he is already back up to 40 and tolerating them just fine. The feeds are important to Chris and I since it took so long to get his weight up. It isn't taking him long at all to go back down.

The doctors came by to talk to me about Kevin when I got back from lunch. They told me that they didn't feel he had the endocarditis and they would keep him on antibiotics for 48 hours. I started to get a little miffed. I told them that we weren't taking Kevin home just to keep bringing him back within a day or two. I told them that I thought Kevin needed a longer course of antibiotics. Five days just wasn't doing the trick and that was obvious since they have tried it twice in the last 2 weeks and the fevers and irritability came right back. He said that if Kevin started to perk up after the 48 hours, then they would discuss how long to keep him on. If they decide to take him off - I will be...well, ya know what? It doesn't matter. I just won't let them. I'll go to the top of the GI branch if I have to. I've had enough of Kevin feeling bad. I'm getting fed up and I think they know it. So, we'll just see how it goes.

I better get...Gracie has been pretty clingy tonight and she wants me to lay down with her to watch a movie. The Little Mermaid or Beauty and the Beast - it doesn't matter, I'm starting to really hate them both!

Our love to all!

Sunday, August 22, 2004 6:17 PM

Sorry everybody. Our home computer is having issues and the library at the hospital has been closed so I didn't have anyplace to update. Kevin is doing better. No cath anytime real soon. The doctors are a little baffled by Kevin. They had told us a few days ago that they thought he had Endocarditis. A virus of the heart. That would have to be treated for 4-6 weeks of IV antibiotics. Then they said he didn't have that, he had Streptococcus Viridans (from a positive blood culture). They didn't know how long to treat that. So, they had to get the Infectious Diseases (ID) group involved. They said that the strep bacteria causes endocarditis. We had two options. We could take Kevin off of the antibiotics for 3 days and take a blood culture each day and see if any of the cultures come up positive. In the meantime, he would stay in the hospital in case he was to get worse from being off the antibiotics. They said that if he definitely had the endocarditis, it would be bad to have him off the antibiotics, even fatal. So we weren't thrilled with that option. The other option was to automatically assume he had it and leave him in the hospital for 4-6 weeks with an IV. But he would need a PIC line (if you remember, Kevin didn't do well with those in the past.) But then, the doctor said that he thought the chances of Kevin actually having this virus was 10-20 percent. He said that there were 2 cultures taken originally and only 1 came back positive. That could have been because there wasn't enough blood taken for the culture. Kevin also doesn't have any other symptoms of the illness except for fever. So, after hearing that - we opted to take him off the antibiotics for three days. He has had 2 cultures taken so far - tomorrow is his last one. They are negative so far. It didn't dawn on me until this morning - what affect does taking him off the antibiotics have on his pneumonia? I asked and the doctor from ID didn't know. So I'll just ask again tomorrow, when Kevin's regular doctors come back. It still doesn't help us with what was causing Kevin pain in the beginning. If he is to go back to the way he was when he first got sick, hopefully it will happen in the hospital and not after we get him back home. It's very expensive when he gets admitted to the hospital and we had 3 admissions within 2 weeks (Shady Grove and JHU twice.)

Kevin is still off oxygen. His sats are from 76-85 percent! They went ahead and took the nasal canula off of his face so you can see his chubby cheeks. All he has on his face is the NG tube. He's been getting back to his old self the last couple of days. Gracie got to see him on Saturday. While he was being held, she got in his crib. She had to lay down and get covered. She stayed in there for a while. It was cute when we first got into the hospital because he kept saying, "Where's baby Kevin? Let's go find him!" She was very well behaved in the hospital that day. Chris and I were proud of her.

Chris and I spoke to the cath coordinator yesterday afternoon. She said that she is glad this is an elective procedure rather than an emergency. She said it will take about 5 hours for the cath because it is very difficult. She said he will be the only one scheduled for that day. She also said that we could bring Kevin home for a week or two so I can get him fattened back up before his cath. He's lost 1 pound since he's been in the hospital. But his feeds are back up to 40 cc's per hour and he's tolerating them. But he just doesn't do well there with weight.

So, even though we haven't been told yet, Chris and I are thinking that Kevin will be discharged by Wednesday at the latest. We still have no nursing in place since the other nurse quit. We do have Saturday and Monday nights covered. It's better than nothing I guess. I think I'll call the company tomorrow and give them a heads up.

I gotta run - I need to cook dinner. I will try to update more often this week! Thanks everyone!

Wednesday, August 18, 2004 2:24 PM

Kevin is getting better. The cardiologist called us at home last night to get our approval to do the cath today. We said no. We were a little irritated because we had spoken to someone about our concerns yesterday afternoon and why we didn't want it done yet and it wasn't communicated to the cardiac team. We were told it would be communicated to them. But it was communicated last night - that's for sure. After we arrived this morning one of the GI docs came in to speak to us. She said that they were planning on switching him to oral antibiotics for the pneumonia for 2 weeks and thinking about sending him home on Friday. That's not happening. I asked her about what they were doing to diagnose what the original problem was. Why is he is so much pain? She said she would have to talk to the other doctors and get back to us. Then another GI doc came in and I went over it with him. He said that he thinks Kevin is getting used to the pain medication. So??? That's fine and dandy - that's another problem we will have to deal with. But he wasn't on any pain medication a week ago when he was admitted with all this pain - so what's the diagnosis? Chris and I don't want to take him home on pain killers and keep him sedated for the rest of his life. We want them to figure out why he is hurting. If they can show us that this pain is being caused by his liver disease, that's fine. That's a reason. But we aren't taking Kevin home until they give us a real reason for his pain or they figure out what his problem is and correct it. I'm getting irritated about this whole thing. I'm not going to be blown off.

When I called to check on Kevin this morning he was on room air. That means that his oxygen was turned off and his sats were fine. They stayed around 78/79. He has stayed off the oxygen for most of the day today. If he wakes up and gets really fussy, he needs a little bit, but not much. He has had a few moments where he is awake and not crying. He just stares at Chris and I. His eyes are a little glazed. They also started to feed him this morning. 15 cc's per hour. That's better than nothing!

So, Kevin will be staying a bit longer. Hopefully he will be well enough for the cath next week. We will fill everyone in when we hear what's going on with that. Also, we were told that we can stay with Kevin in the cath lab until he falls asleep. The hospice rep from the hospital checked on that for us yesterday and got the OK. We appreciate that. That was something that I was worrying about.

Take care. Gotta go - it's time for hospital bingo on the TV. They have a teething ring that I would like to win for Kevin. :)

Tuesday, August 17, 2004 2:03 PM

Kevin is holding his own. He hasn't woken much, but when he does I'm glad that he can see Chris and I standing there by his side and he knows we are here. He settles easier than yesterday, but he still gets upset. His head is very congested and he can't breathe through his nose - so that means no "B" (pacifier). He sounds pretty bad when he breathes. I guess from the pneumonia. They took blood samples from him this morning for a repeat culture to see if he still has the infection in his blood. They assume the infection in his blood is from the pneumonia. We were told today that they wanted to cath him tomorrow. Huh? As sick as he is? But then they said that they weren't going to until his culture came back negative. We said that even if it is negative, we don't want Kevin to have his cath until he is feeling better. He would probably have a harder time being sick like this. I thought it was pretty stupid for them to want to do it so soon after him being ill. But they are listening to Chris and I. I also asked about Kevin being fed. Even if it was a small amount. It would be better than nothing. I figured the answer would be "no", which it was. He explained that it wouldn't be good for Kevin with his pneumonia right now. But after his culture comes back negative (hopefully in 48 hours), he could start to eat. They understand that we don't want Kevin to have TPN (that is what burned his foot so badly in February). But he needs nutrition. He has lost almost 1 pound since last week. The poor kid - he is breathing with his mouth open so the tip of his tongue got very hard and dry. To the point that it was probably going to scab up. I put vaseline on it and it made a bit of a difference. We asked if they had anything here to help and they put an oil on it last night that is meant to coat the stomach. But it seems to be helping. It's much better.

Chris and I did go over the DNR plans for Kevin yesterday. No breathing tube, no chest compressions or shock to his heart. He may receive ampicillin one time to see if it helps his heart. But if it doesn't work that one time, that's it, no more. The doctors agreed with our choices and thought they made sense.

We have to leave 2 hours earlier today because Chris has an appointment. I hope Kevin doesn't wake up when we aren't here. Depending on how he is, we will bring Gracie in to see him on Saturday. Gan and Pop will come too so they can take her home after she sees Kevin for a few minutes. We have made arrangements for her to play in the playroom and make crafts for a little bit and then we will have lunch with her before she goes. She asks about him every day, several times. She misses him.

Well, I need to get back up to be with our little guy. I'll give him lots of kisses from everyone!

Monday, August 16, 2004 1:34 PM

Kevin was admitted back into the hospital on Saturday night/morning. Chris and I got to the hopital at 10pm on Saturday night and we got home at 5:45am Sunday morning. Kevin had settled down so we came home to get some much needed rest. Kevin came back because he was so uncomfortable and his fever returned. His food was turned off and he is back on IV antibiotics. They still don't know what his problem is. Chris and I came back yesterday at 1pm. Kevin was sleeping alot, but when he was awake, he was upset. This morning they called us 20 minutes before we were to leave the house. His sats were getting low and they were thinking about moving him to intensive care. As we were leaving, they called back and said they were just going to move him to a high observation area and keep him on the 6th floor. Shortly after Chris and I arrived, Kevin almost died. They had to put a bag over his face and give him extra breathes. His sats went down into the 20's and his heart rate dropped dramatically. They pushed the code red button and in 5 seconds there was almost 20 people by his bedside. They asked Chris and I if we wanted to leave - but we stayed. They think that the collaterals to his lungs are clamping down when he gets upset and that makes his heart rate drop. So, now he is being kept sedated. They don't want him to wake up. Hopefully he will start to heal while he is resting. They told us he will be moved to intensive care (PICU) today because he is requiring too much care. Kevin has also developed pneumonia in his right lung that they are treating with antibiotics. That's also scary because when we were discharged back in April, we were told that he probably wouldn't be able to recouperate from something like that. But Kevin is such a little fighter - we think he can. Chris and I will be staying at home in the evenings because you cannot sleep by your child in the PICU at night. If Kevin gets worse, we will make arrangements to stay here someplace and Chris and I can take turns so at least one of us can be with Gracie in the evening. We just got her back last night and it would break her little heart if we left her again so soon. She asks about him alot. She wants to know if he is feeling better and when he will be coming home. We pray that Kevin will get over this latest hurdle - but it seems to be a large one. Chris and I were scared to death when he went into the code red. We aren't ready to lose him - but it is something we have to think about. More often lately. Since we were discharged on Friday, we have to give the DNR orders again (do not resuscitate). That's always hard for us too. Well, I need to get back to my baby. We know he is in your thoughts and prayers.

Saturday, August 14, 2004 5:46 PM

Kevin is sleeping comfortably. He had a pretty bad night. He was throwing up alot. We had to change his outfit 3 times by midnight. Kevin has started a new thing...when he is angry, he will take his right hand and put his fingers in his mouth and scratch at his gums. Then, of course, he bleeds. And bleeds, and bleeds. We've started to keep a sock on his hand which really pisses him off. He tries to pull it off. I've put Orajel on his gums - but he still goes for it. I have put him back on the Reglan to keep him from throwing up so much. He has a cough (from the NG tube) and he also has some congestion in his head. So he coughs and throws up to get it out. When he was in the hospital and the NG tube was out, he didn't cough. But that's the least of our worries right now. The nurse called for tonight - she has a cold, so she isn't coming. The nursing company called a few minutes ago. They asked Mica (the full time nurse) if she could work. She said she hadn't slept, so she couldn't. She is normally scheduled for Sunday, but she told them that she couldn't work Sunday because she got a new job and had orientation on Monday morning. So, she hadn't even told the nursing company that she got a new job until now. It would have been nice if she had told us so we would be a little prepared. We have no nurse for the next 2 nights. We have one for Monday night. After that, still no nurse. The nursing company is trying to find us a new nurse. It's like we are starting all over again. Mica told them that they could call her and she could see if she could do a night next week. But I told them that if she will be working days for the new company, she can't work any nights for us because she won't be awake. This sucks. But hey, I did it before, I guess I can do it again. I'll just be really, really tired. Mom and Dad are keeping Gracie one more night. Which is a big help. But we miss her terribly.

I need to tell you all about the future plans for Kevin. The cardiac surgeon said that they aren't going to perform heart surgery now. They have opted to put 2 stints in Kevin's collaterals (vessels that go to his lungs) during the cardiac catheterization. This would bring his blood oxygenation level up to 90 percent or greater. Dr. Lau would perform his liver transplant if his sats got that high. BUT...during the cath, they have to measure the pressure in the right side of Kevin's heart. It is supposed to be 1/3 the pressure of the left side, but Kevin's is almost 3 times higher. If his pressure is still too high, he can't have the transplant. They said this way, with the stints, he could have a little bit more time to live. And hopefully he would die from the pressure being too high. I forgot what he called it, but he said it would be the best way for him to go because it would be quick and painless. If the pressure is OK, then he will have a transplant and then another heart surgery later to fix the rest of his heart defects. The doctor also said that his risks for the cath are a bit high. He said that if Kevin were to pass during the cath, at least we know that we tried to help him. The doctor said that Kevin is as sick as a sick kid can be. I never really thought of him being that ill. Also, if Kevin gets to the point of a liver transplant, it would need to be a living donor. That would have to be Chris. My blood type doesn't match. We can't get a donor liver because a liver would go to a child that needs a liver only. Since Kevin has too many problems - he won't receive one. They want to donate to a child who has a better chance of living. We understand - but that stinks. Chris would have to be out of work for a while. In the meantime, he wouldn't get a paycheck either. That's gonna hurt. So, that's where we stand right now. We are waiting for the cath lab to call us to tell us when his appointment is. Last time he had his cath, Chris and I had to leave right before they put Kevin to sleep. It was horrible. He was surrounded by people but his head was turned towards us and he was crying. He was looking right at us. We had to walk away, crying ourselves. I don't want that to happen this time. I want to tell them to let us be there until he is asleep. If that is the last time that Kevin gets to see us, I can't let that be his last memory. That would haunt me for the rest of my days.

Kevin is resting now. He just hasn't been himself since he got home. He cries alot. But we have medication to help with aggitation and pain. Unfortunately, it knocks him out. He will wake up screaming sometimes, but you can rock him back to sleep fairly easily. Chris and I are going to take turns with Kevin tonight. That way we can both get a few hours of sleep. We just want him to feel better. And I don't know if he will ever be back to the way he was. The doctors don't know what was wrong with him. All I know is that I want my little baby to feel better. If he has to go on like this, I think I'd rather him just let go. The way he is right now is no way to live a little life. That all I'm going to say for now - this is just killing me thinking about all the what if's and sitting here crying. I'm gonna go watch Kevin while he sleeps.....

Take care everyone.


August 14 - 8:03PM - We are taking Kevin back to the hospital now. He is miserable and the pain medications they gave us aren't helping him. His fever is coming back and we are back to where we were 1 week ago.....we'll keep you posted. Pray for him.

Friday, August 13, 2004 7:31 PM

Kevin is home! He's been kinda cranky - but sleeping on and off. We got home around 4pm today. We did speak to the cardiac surgeon before we were discharged. They spoke about Kevin at their conference today. I have alot to explain about what will be happening with Kevin, but unfortunately, I can't go into it right now. Kevin is upstairs on the couch 1/2 asleep and Chris isn't home. So I have to go watch over him. I will update tonight if I can, if not, tomorrow. (We have no nurse tonight either...ick.)

Our love to you all!

Wednesday, August 11, 2004 9:59 PM

Thank God, Kevin is getting better each day. The GI team said they are going to take him off the antibiotics and when he gets back up to his normal feeds - he can come home! But I have other news...the cardiac surgeon came by today. He never met us before, but we were aware of who he was. He was the surgeon that said that he wouldn't operate on Kevin's heart because Kevin was too complicated. He showed up today and said, "Wow, he's big." So, he thinks he can perform the operation now. Of course Kevin has to have a cardiac cath again to make sure this is possible. He said that things may have not changed and grown with his heart, so in that case - Kevin can't have the operation and things remain the same. But, if Kevin has grown inside as well as outside, then he thinks he has 2 different ways that he can do the first repair of Kevin's heart. He needs to get his SPO2 up to nearly 100 percent for the liver transplant to be successful. After the liver transplant, Kevin will need a few more heart repairs. Can you all believe I'm even saying this?? Chris and I are so hopeful, but we have to remain calm. These are some huge operations for Kevin to get through. The cath itself scares me. If the cath goes OK and they want to perform the surgery, Chris and I still have to talk to them about the mortality rate for Kevin. If there is a large chance that Kevin won't survive the surgery, we probably won't proceed. But I have pictured myself calling the Hospice people and saying, "I'm sorry, we don't need your services anymore. Our son is going to live." Wouldn't that be great?

Ya know, I was thinking today, "what if Dr. Lau hadn't seen us and that Kevin had grown?" Nobody told us that if Kevin grew that there could be a chance for him. They just assumed that he wouldn't grow - so they didn't say anything to us. Chris and I just thought it was because he was "too complicated." If Kevin hadn't gotten sick and gone to the hospital, we may never have had this chance to find out if he can be saved. That would have been a horrible thing to never know. Isn't it weird how things work out?

So, the surgeon said that we could stay in the hospital until his cath - but we don't want to. He does better at home - even if it's for just a few days. Who knows - the cath may not happen until late next week. I don't want to stay in the hospital that long if we don't have to. Chris is staying with Kevin tonight. I have the night off. I don't know what to do...I'm alone for the first time in almost 3 years. I will go back tomorrow and stay with Kevin for the rest of the week. Gracie is with Gan and Pop (and Grandma is visiting too.) She doesn't seem to miss me much. When I talk to her on the phone she is usually too busy playing. It's perfectly fine. It makes me feel better that she isn't sad about being away from Chris and I. She's being well taken care of.

Well everyone - keep up those prayers. We will let you all know when he will be released and when his cath is scheduled. Hopefully he will pull through easily and we will have good news.

Tuesday, August 10, 2004 12:38 PM

He's still here and getting stronger!! We were told yesterday that they weren't going to feed him and they were going to take him off of the antibiotics because it was "futile". Then...(here comes some good news people) the GI doctor that took care of Kevin last time came to see us. He pulled Chris and I aside out of the room to speak to us. He apologized for what we were told about Kevin not being able to survive this recent battle. He said that they don't know why his heart was having those episodes - but they've stopped. He told us that nobody can tell us how long Kevin will live - nobody can predict it. He said that he was putting Kevin back on the NG tube and starting to feed him. He is going to put him back on all of his medications and keep him on antibiotics. They want to try to get him better and get through this. The problem is that they don't know what the problem is. They don't think he has Cholangitis like last time - and he seems to be in more pain than last time. Kevin is currently on Morphine, Pentabarbitol and Methadone. (After the emotional roller coaster we've had these last couple of days...mommy needs a shot of that stuff!) Deep down Chris and I felt that he would pull through. His Gan calls Kevin "The Comeback Kid" and she's right. He is such a fighter. You can't imagine what it feels like when the nurse calls you crying on the phone telling you that the doctors said your child is dying and dying soon. I know what doctor said that and I haven't seen him since. I think I might have the urge to squash his little butt into the ground if I do see him. But of course - I would wait to do that after he sees our son and how well he is doing at this moment. Who, by the way, is upstairs in his hospital bed licking an orange popsicle. He is awake and alert and not crying. He seems to be getting more comfortable. (Honestly, he's stoned.) All of your prayers are most certainly helping our little guy. And we appreciate you all so much!

Dr. Lau stopped in this morning. He spoke to the heart surgeon and he asked him to re-evaluate Kevin. Dr. Lau said that if the heart surgeon can do something to get his blood oxygenation level up to normal, then Dr. Lau will give him a liver transplant. He said that Kevin will need several heart surgeries - but he is hoping that they can figure something out for him. He said that if Kevin was the same weight as when he left, that he wouldn't even give this a thought - but he sees how well Kevin is doing and wants to try. He would need another cardiac catheterization (which scares me). But we'll cross that bridge when/if we come to it. He said that the outcome may be the same and nothing can be done - but at least people are re-thinking this. We'll just have to wait and see. Right now we need to concentrate on getting Kevin over this hurdle. Then we need to concentrate on getting him off the drug addiction that I'm sure he'll have.

I stayed with Kevin last night and he did very well. (I didn't, but he did and that's what counts!) No cardiac episodes at all and his SPO2 was perfect all night on just 3/4 liter of oxygen. That's less than what he was running at home. I will be staying again tonight to keep my eye on him. Thank you all for your support and prayers for out little guy. God is listening. Hopefully He will see how much we all love Kevin and want to keep him with us that He'll let him stay here on earth for a long time. Just in case, I better start saving my money because I have promised Kevin 16 cars since he started going through all this. This is such an emotional roller coaster for us - and all of you. Thank you all...

Monday, August 9, 2004 8:49 AM

The hospital called at midnight to tell us that Kevin wasn't doing well. His NG tube didn't get put in because he is too sick. The nurse called me every hour or more to keep me informed of Kevin's condition. I couldn't leave because I had taken sleeping pills before I went to bed. But I wanted to leave and go to him more than anything. The nurse told me that the doctors had been in to see Kevin and they don't think he will live but another day or two. His heart is giving out. He's just too tired. Chris and I thought he would get better like the other times. But he's not. And I can't believe it. I can't believe this is happening. I have to stay strong - but I'm a mess. I can't go more than 5 minutes without crying. Gracie asked why I was crying this morning. I told her because Baby Kevin was very sick. She said he would come home. I told her I didn't know if he would be coming home. She said that he would, when he got better. I said that I didn't think he was going to be able to get better. But she said he would - and we would bring him home.

Kevin is being kept comfortable with morphine. He cries out when he is in pain, but he doesn't open his eyes. He opened them once yesterday, but only for a second. But he knows that we are there. We can sometimes calm him with our voices and our touch. We are leaving for the hospital now and I will be staying with Kevin 24 hours a day. I need to hold him and talk to him and tell him how much we all love him....

Sunday, August 8, 2004 7:58 AM

Kevin is doing better. They still don't know what the problem is. He keeps spiking a high fever and he is in pain. He is on a constant morphine drip, but he needs additional morphine by mouth every few hours. He had a horrible night his first night, but last night was much better. I called to check on him at 4am and he was sleeping. He was up crying most of the night before. He was doing well when Chris and I arrived yesterday, but he got very fussy and uncomfortable. He received morphine, but he cried for another hour and 1/2 before he finally fell asleep. They took out his NG tube his first night. So he hasn't been fed. Only IV fluids. So he isn't getting his medications either. The only med he is getting is Lasix. I told them that if he stayed calm and was getting better, that we wanted the NG tube put back in and all of his meds given. And of course his food started back up. I told them that we don't want to have to play "catch up" with him on his food volume or medications. No food means that we have to start back at a low rate again and work him back up to 40 cc's an hour. He will lose weight. And them not giving him his medications could cause many problems. Vitamin deficiencies, high ammonia, low sodium, low potassium. His medications are for all these things. Plus, they aren't giving him aspirin for his heart! The doctor said he would be ok for a few days without it. It's been 2 doses that he's missed now - put the tube in and give him the meds. If he didn't need all of these medications then why is he on them at home? I haven't called yet since I've been awake so I'm not sure if the tube is back in or not. Kevin does well for a while and then something happens and he needs 5 liters of oxygen (which is ALOT) and his heart rate goes way high. He is on antibiotics so hopefully they will kick in and he will get better and stay better.

ALL of the nurses were impressed to see how large Kevin has gotten. They love him there so he gets taken care of well. Dr. Lau saw us yesterday in the hallway. He didn't know Kevin was there. We told him that Kevin had been doing well at home and was growing and got a couple of teeth. He was surprised. He asked if any blood work had been done. We told him it was done that morning. He went and checked the results. Then he walked back to Kevin's room. He walked right past him because he didn't recognize him. We pointed him out and he couldn't belive how big he got. He poked at him and looked him over and asked a few questions. Then he said that seeing Kevin makes him want to "re-evaluate things". He said he is going to talk to his colleagues on Monday and see what they say. We couldn't help but get excited - but we held it in. He told us not to get our hopes up because although Kevin is growing, he still has the defects inside of him and that hasn't changed. But he's stronger. So, we will just pray that they can some up with something to help our son. If not, we will just hope the other hospitals can help.

We don't know how long he will be in the hospital. Maybe a week? It depends on how he does. He has already had his IV changed twice. And he gets blood draws every day. He's not used to that kind of pain anymore. Well, I'm going to go call and check on my baby. Please keep him in your thoughts and prayers (and we know you always do.) Thanks everyone!

Saturday, August 7, 2004 9:13 AM

Kevin is very sick. He was admitted to the hospital yesterday. The hospital called this morning to ask about resuscitation procedures for him because he is doing poorly. Chris and I are on our way to be with him and I will probably be staying by his side tonight. We need your prayers more than ever right now. I will update as soon as I get a chance. Please pray for our little boy. Thanks everyone - God bless....

Thursday, August 5, 2004 1:09 PM

A social worker for hospice was out here on Tuesday. We talked for about an hour. One thing she told me about was her neice who passed away at 7 months old. She was born with a heart condition, but that isn't what killed her. She had a G tube put in. (That's the tube that goes through your side into your stomach rather than through the nose like Kevin has.) Well, hers came out of place and they weren't aware of it and the formula went into her body cavity instead of her stomach, which killed her. I wasn't aware of the potential problems from a G tube. Then, the hospice supervising nurse called me that evening. She was talking to the speech therapist and while she was going over all of the symptoms Kevin has been having lately, she thinks that maybe he has sinusitis. That would be caused from the NG tube being in his nose so long. She said that the NG tube isn't used for a prolonged period. It's only for short term use. Kevin has had his for 9 months. As she spoke, I remembered that the doctors at Fairfax told us the same thing. So, they are going to check him out and maybe he will get a G tube. Perfect timing huh? Let me hear a horror story from someone and then tell me my child might need one? But she had no idea that I had spoken to the other hospice person about that. When the night nurse came I asked her about the G tube and she told me that they had a little girl die from the same thing. Hers was out of place for 3 whole days and she went into shock and then passed away. She said there isn't really any good way to check for placement of the G tube. (You can check for placement of the NG tube a couple of ways.) Chris and I will look into the G tube. It would probably be better for Kevin in the long run because he will be more comfortable. He would be uncomfortable at first because of the incision in his tummy - but we have medication to ease that pain. Nobody has called me about coming to see him so I won't worry about it until then.

The full time nurse we have can only work from 10-7 and not start at 9:30 as I prefer. She was contacted yesterday about it. So, I assumed she would be here at 10pm. Why do I do that? I took 2 sleeping pills at 9:30 so I would be tired enough for bed when she arrived. I got tired alright....but she didn't arrive. Not until 10:45! I was sitting in Kevin's room with him getting more and more irritated as each minute passed. She arrived and said, "I hear I have new hours now?" (Yea - so where in the hell were you??) I said, "Yes, so I expected you 45 minutes ago." She said that she told the nursing company that she couldn't start that night, but she could start tonight. Even so, then she was still 15 minutes late. Which is pretty much the norm. So, I slept in 15 more minutes this morning. After she arrived she started to talk to me about her kids. I said, "Mica, I'm sorry, but I took 2 sleeping pills over an hour ago and I need to get to bed. Good night." I didn't care about being polite and listening to her about her issues. I was TIRED!

I went to use the thermometer the other day on Kevin. It's the ear kind so it has protective caps that you use with it. I picked it up and it was NASTY dirty. I was aggrivated. That's why his temperature readings have been coming in low the past week or two. 94, 95. There was so much gunk on the cap that it wouldn't pick up a good reading. I wrote a note to the nurses saying that it was disgusting and the cap is either to be wiped off after each use or replaced with a new one. The box of caps has been sitting on his dresser for 2 months. Then I taped the cap to the paper so they could see just how gross it was. I'm going to leave it there for a week so all 3 nurses can see it. That is just pure laziness on their part.

Since I've had Kevin I've had no interest in watching "A Baby Story", or "Birthday". You know, those shows that show the women in labor and then having their babies. I don't even want to watch a dog having puppies on the animal planet channel. But, I watched about 4 minutes of one of these shows a few days ago. I started to cry. Chris caught me and he was sorry. He felt bad for me. He told me about how special our baby was. And I know he is. It just hurts. They have their lifetime ahead of them with their children and I don't know how long we have with Kevin. I wish he could have a normal life like other children. But he can't. So I'll just hold him and love him every day. I tell him each night that I love him and I'm glad God gave him to us. I thank Him for a good day and that I hope God gives him a good day tomorrow. Then he gets about 40 kisses on the forehead. He's adorable.

I am starting to run short on my leave. I will be asking NIH to send out a notice for more leave requests. If you could donate, please....Everyone has helped so much already. And I have cherished the time I have had at home with Kevin. I would like to stay home with him for the rest of his days. I know that there aren't many people out there who have the ability to do what I'm doing and I appreciate my work for allowing me to do this. I thank each and every one of you who has helped me be able to spend time at home taking care of my son. Thanks everyone!

God bless!

Tuesday, August 3, 2004 1:04 PM

Kevin had a "real" tubby on Saturday night. He usually just gets a dip in the kitchen sink. But Gracie spent the night at her cousins house so we decided to let Kevin take a bath with me. You are probably asking why can't we do this with Gracie here? Because she would HAVE to be in the tubby too and it would be just way too much stress. Kevin usually cries a bunch during his tubbies, but he didn't make a peep this time. I just held him by the back of his neck and let him float around. Then Chris gave him one of Gracie's Barbie dolls and he played with that. He did really well. He slept so good that night. He was really fussy that whole weekend because of his teeth bothering him. That 2nd one still hasn't popped through - but I think he's working on it.

Our extra hour of nursing each night has been approved by the State. I believe it should start tonight. Hopefully the nurse tonight will be able to come earlier....I'm not sure. I will call the nursing company to see if they received the paperwork and called the nurses. The nurse last night comes once a week. I'm starting to have some issues with her record keeping. Sometimes she doesn't fill out the paperwork at all. She says it's because she has to hold Kevin. But last night she gave him 3 full doses and 1 half dose of morphine. He has never needed that much at night and especially now since he is using even less morphine. I asked her when she gave it to him and what his respirations were...she couldn't really tell me. She hadn't written it down. I told her that she used a lot of morphine. I just let it go. But when she comes back next Monday, I'm going to tell her that she needs to write down the amount given, the time and what his respiration rate was when it was given. She needs to keep better track of that. The nursing supervisor also came last night. She got here about 10:25pm to speak with me and look over the records. She said that she was tired because her first case was at 8am that morning. I thought to myself, "Shut up woman. Get 4-5 hours of broken sleep each night and then put in a full day from 6am to 11:30pm." But she was nice. She thought Kevin looked really good. She last saw him 2 months ago when the nursing company first started with us.

Speaking of sleep...Chris has been getting up at 2:15am this week and is getting home after dinner time. So he's pretty tired. Well, Gracie wants him to lay down with her in her bed while she watches "Beauty and the Beast" (EVERY NIGHT). She usually falls asleep watching it. So, he lays with her and he sleeps while she watches her movie, then I just wake him up and put him in our bed after the nurse arrives. Well, last night Gracie kept shouting and yelling "stop it!". I thought, "What in the hell is he still doing awake and why is he bothering her? She needs to get to sleep." I was in the living room with Kevin. Finally, I got up and went upstairs to check on them. Just as I got to the top of the stairs, she yelled at him again. "Stop it daddy!" He was SNORING! So loud that she couldn't hear her movie or get to sleep. She was also hitting him in the arm and he wouldn't budge. So I got him out of her bed and put him where he belongs. As I was pulling him up, she said," Get out and go get in your own bed!" Boy - she was irritated with him. Two minutes later she was sound asleep. Poor things!

I spoke to hospice yesterday and told them that I took him back off the Reglan on Sunday night and why. She said that after speaking to people there, that they want to send out a speech therapist to look at Kevin. She wants to see if maybe he is having issues with swallowing and maybe that's why he's coughing, because he can't handle the saliva. She said they may also want to do a dye test to check his swallowing functions. I don't know when that person will be coming - soon I guess.

Well, I need to get some things done around here. If I don't get my laundry done I will have to be naked tomorrow!

God bless!

Saturday, July 31, 2004 6:36 PM

Kevin is CRANKY today. He doesn't seem to be in pain - he's just very whiny. He's been having a cough and the hospice doctor wanted me to put him back on the Reglan (which he was much happier being off of that), because besides keeping his stomach muscle closed, it also helped to keep his tummy cleared. It moves his food through his entire system faster. They said it would keep any extra fluid out of him which may be contributing to the cough. I told them if Kevin started to get real gaggy again I would like to take him back off. Plus, he had the cough before I took him off the Reglan. He also increased his Lasix. I had sent a message to Kevin's cardiologist some time ago inquiring about increasing his doses of medications as he grows - but of course I didn't receive a response. The Lasix dose was almost doubled because of the size Kevin is now. With everything hospice has said to do - I haven't seen a difference with his cough. I'm going to leave him on the Reglan through the weekend so I can tell them I tried.

Chris and I have talked about taking Kevin out. Maybe to the mall. He needs stimulation. He doesn't get to go anywhere besides his bedroom and the living room. Sometimes I can take him out on the front porch - but it's usually too hot or those damn mosquitos are out. If we take him to the mall people will probably think I'm a witch. I can see myself now..."Don't look at him. Don't breath near him. Stay away!!" Nah, I wouldn't be THAT bad. But he does have to get out. I asked Nina to have Gracie and her cousins cut out some shapes and colors for him so I could put them on the wall and ceiling for him. She did that same day and I put them up that evening. Sometimes you look over and he's just staring at the ceiling.

I forgot to tell everyone that Dr. Shwarz did get a chance to look at Kevin's blood results and she thought everything was still OK. She isn't changing any of his medication doses and she was happy that he was able to come off the Reglan. Kevin also has seemed to need less Morphine than before. Maybe 3-4 times a day. He was up to 9-10 times a day. Today though - he's needed more. Hopefully he will get back to his old self soon.

There are new pictures up on the website!! They aren't on the photo page. They are on the extra link that his Aunt Linda made. The link is located towards the bottom of this page. Remember, there are 2 pages of pictures when you get to the page!

I have also updated the hospital information section with our home address and phone number. Several people have asked for it and my e-mail has been down and I can't respond. So - there you go! Thanks everyone and take care!

Wednesday, July 28, 2004 11:40 AM

Kevin has been kinda fussy these past couple of days. He's been sleeping more than usual also. The nurse on Saturday night didn't show up until 1am. I was extremely tired. It's hard to not get much sleep at night, go all the next day watching him and then having to stay up until 1am that night. Kevin sleeps during the day, but it's not easy to get a nap in for yourself. He wakes up screaming alot because he's lost his pacifier or has a gas pain. I'm glad the nurse showed up eventually because I wasn't going to be able to stay awake much longer for Kevin. I called the nursing company at 11:15pm and left a message asking where our nurse was. The first 2 times I tried to call their line was busy. They called me back immediately. She had just spoken to the nurse who's car had broken down. (I guess her and the nurse were the ones tieing up the line.) By the way, the nurse did say that she was out of town last Saturday. (I wasn't sure if the nursing company was lying to me or not.) I asked her if she was staying 8 hours starting at 1am. She did. But I still needed to get up to give Kevin his 7am medications (9 of them). I went into Chris and asked him to set his alarm for 6:50am so he could do it. I told him that I was going to turn my alarm off and sleep until Gracie woke me up. I haven't slept past 6am in MONTHS. But, of course, my internal alarm clock had me up making sure I heard Chris awake and taking care of the meds for Kevin. Which he did. I went back to sleep until 8am! I guess it's not too much of a big deal since I didn't get to bed until after 1:30am....

I don't think the nurses coming at 10:30 and staying until 6:30 is enough time. Especially when they don't show up until 10:45 or 11:00 many nights. So I called Ellen who works with the State Dept and asked her what I had to do to get an extra hour each night. I would like for the nurses to come at 9:30pm instead of 10:30pm. She said she would contact the State and let me know. I haven't heard back yet.

Kevin has been taken off one of his medications! The Reglan. That was the medication that held the muscle above the stomach closed so he couldn't throw up (or burp). He was still throwing up, but it was only a couple of times a day and it was mostly mucous. (Did I spell that right?) I had asked the doctor on Friday if I could take him off of it. She said that I could try. Well, Gracie had a party to go to on Saturday and Nina was watching Kevin so I wasn't taking him off on that day in case it didn't work. I didn't want him throwing up on Nina the whole time. So he came off the next day and everything is fine. He still only gets sick about twice a day and it's clear fluid. He no longer gags or rolls his eyes back into his head from trying to force the vomit out. He would also work up such a sweat. But now - you have no notice when he's going to get sick. Before you could tell when he was going to get sick. But now he just looks at you and "blehhh" - there it is. Like a regular baby I guess.

I called JHU yesterday to get his blood results from Friday. The doctor hadn't looked at them yet but the nurse went over them with me. His ammonia level and bili count have both gone up. His bili count is 16.8 (it was 13). But it's been worse. His Potassium level was high - but still in the normal range. And the sodium was low - but still in the normal range also. He had problems with both of those when he was in the hospital. I asked her if there were any red flags. She said there were a few yellow ones, but no red ones. She said she would go over them with Dr. Schwarz and let me know if she wants to change any of the doses of his medications. We have another appointment late next month.

Pictures will be up soon - we promise! There are some really good ones of him smiling and one of Gracie getting packed up to be shipped to her new family.....(smile)

Take care everyone! Our love to all of you.

Friday, July 23, 2004 8:56 PM

Where do I begin? I'll go over some stuff from this week first....Kevin's new favorite toy is an orange Tic Tac box (I ate them for breakfast one day, very nutritious.) He is now up to 36 cc's per hour on his feedings and is holding it down well. He was having problems with a fever that would come and go. I wasn't going to worry unless it was a high fever that wouldn't break and he needed Advil for. These fevers have been about 100 degrees or less and would break with just putting a cold wet cloth in his diaper. I think I only needed to give him Advil twice. I'm assuming that maybe the fever was in conjunction with the teething. Which, by the way, he still only has one tooth. The other one never broke through. You can see it under the gums - but it hasn't broken the gum. And, he bites HARD! When I would put the Orajel in his mouth he would clamp down so hard that I couldn't rub the Orajel in. Then he would salivate alot because of the cherry flavor. He was like a pit bull that got hold of a steak. And he would leave a mark in my finger! I call him my "little hillbilly" because of his one tooth.

We finally received his "Chillows" in the mail. They are pretty neat. It's like a mat that you fill them with water and it gets cold. They are meant to go inside your pillowcase for people who like to sleep on cold pillows and not warm ones. They are good if you have sunburn too. But we have one in his crib and one in the living room for him to lay on. They seem to work.

I also received a statement from the hospital last week. It was for $107,000. I started to freak out a little bit when I couldn't find the part where it states "this is not a bill - your insurance company has been billed." But thank God - I found it. We have to pay about $500 a month for Kevin's expenses. It's like another car payment. But he's worth it. At least we don't have to pay $107,000!!

We had some issues with his morphine. The dosage he was getting wasn't always helping with his high respirations. I called the hospice pharmacy and they told me he could get .3 cc's for his weight and age, but to check with the doctor. I left a message with them and in the meantime I started giving him .2 cc's for a full dose. (His normal full dose was 1.5 cc's - so that wasn't much higher.) The GI nurse called me back a couple of days later and told me that we could go by what the pharmacist said and the morphine has no ill effects on his liver. BUT...the pharmacist called me back and told me that they misunderstood me and 1.5 cc's was the correct dosage for him. (How do you misunderstand someone when all they ask is "what dosage can my son have if he weighs 14 pounds 2 ounces?") Whatever. I talked to hospice after that and told them that I had been giving him .2 - they said that they spoke to the manufacturer of the morphine and he could keep getting that dose. But I felt I should double check today at the GI appt. I found out that he can only get up to 3.3 mg for a full dose - he's been getting 4 mg per dose. So, we are going to leave him at .2 cc's which is a little more than suggested for his weight and age. But it's not having any adverse affects of him - so he'll be OK. It's weird how I know all about mg's and cc's, etc. Unfortunately, all of the things I knew from my job have left my brain! I had to make room for all the new things I had to learn about Kevin. Hopefully it will return when I get back to work. I don't know when that will be. I think I have enough leave to get me through September or close to it. I would like to apply for more donations. If I can't get any more - then I have to go back. But I've thought about it and I'm very uncomfortable with it. I would be very angry at myself if Kevin were to pass while I was at work and not here with him. He's not necessarily going to give signs about when he will pass. It depends. I don't want to think about it. But I don't know how I would get over it if I weren't with him. Let's move on to what happened at the appointment today.....

We arrived at 10:45am for our 11am appointment. We weren't seen until 1:30pm. Almost 3 hours late....but hey, what can you do about it? The nutritionist saw us first. No wait - before I go there, he was weighed and measured first. 14 pounds 11 ounces and a smidge over 25 inches long! I want to weigh him tomorrow. Last I knew he was only 14 pounds 2 ounces and that was only a few days ago. So, back to the nutritionist...she was VERY pleased with his weight. He is almost on the growth chart. Gracie was always in the 95th percentile (now she's in the 97th). Kevin is really close to getting into the lowest percentile, which is 3 percent. He's almost there! Then Dr. Schwarz examined him. She thought his tummy was a bit large. She thinks he may be holding some fluid. She doubled one of his medications which gets rid of fluid in the tummy area. He is also on Lasix, but that is to get rid of fluid in your heart area. She said that this MAY help with his breathing issues. Gosh - we sure hope it does. He seems so uncomfortable sometimes. He may also go down in weight a little bit if this works - but that's OK. Overall, she was very pleased with Kevin's condition. She said he is doing well and is hanging in there. He's doing better than they thought he would. After we left there, we checked out. We had to argue with the people again about getting his blood drawn there. They wanted us to pay. Not happening! So, we got our way again and we went to get his blood drawn. The ladies in the blood drawing area really like him. They always remember him. He did well again this time. He was so tired that he didn't even make a fuss. They only had to stick him once and they got what they needed. We'll get the results on Monday. We go back in 4 weeks.

Well, Gracie is climbing on me and hitting the buttons which is making this very hard. Plus the screaming in my ear isn't helping. I'll update more in case I forgot anything!

Take care everyone. And thank you, as always, for your prayers!

Thursday, July 22, 2004 7:49 PM

I've got lots of people upset with me because I haven't entered any updates! Kevin's respirations have been so bad lately that I won't leave his side long enough to type an entry (they take about an hour.) The morphine isn't really working for him. He goes back to Hopkins tomorrow morning at 11am. We should be home around 4pm. I PROMISE I will update everyone tomorrow about what's been going on and how his appointment went. By the way - as of a few days ago he broke the 14 pound mark and was 14 pounds 2 ounces! My little chubster!

Take care and check back tomorrow evening! Thanks everyone!

Thursday, July 15, 2004 2:55 PM

Kevin is doing much better these last couple of days. He had some really hard nights because of his new teeth coming in. He is working on his second bottom tooth right now. It's right there and should be through in the next day or so. I can't understand why his teeth are giving him so much trouble with the pain. You figure after all this kid has been through that a couple of teeth wouldn't be a big deal for him. But he is grumpier now than ever. He never complained like this through his heart caths, heart surgery, liver surgery, etc. Maybe it's because he hasn't been bothered in over 2 months and he is realizing what life is like without pain. That's a nice thing.

The GI nurse called today. She was waiting to hear back from Chris and I about sending the summaries to the other 2 hospitals. She told me that Chris said he would talk to me about it and call her back. I must have misunderstood Chris. I thought he told me that the summaries were being sent out. Well, now they are. She said she would get them out today. Since they are GI, we have to go through the GI teams at the other hospitals. The GI teams at the other hospitals will get with the cardiologist teams there and see if they can help us. Either they will call us and tell us they can't help us OR if they have some hope, they will make appointments for us to meet with GI and Cardio at their hospitals. New York and Ohio - that's not too far. I don't think I would want to take Kevin on a plane. I think that would be just WAY too much trouble due to all the new security. He has metal in his chest (that hold his ribcage together) - I wouldn't be able to get him through the security gate! We would have to drive. I'll worry about all that after we hear back from someone.

The nursing situation has been OK. We have 3 nurses that work with Kevin and they all have brains and they take good care of him. They tend to show up late 85 percent of the time (or not at all). What I've started doing is resetting my alarm according to how late they are. They show up 15 minutes late - they are getting out of here 15 minutes late. If they are on time, they leave on time. Yesterday I got a call from the nursing company. They told me I would have another nurse on Saturday. What happened to the woman I had for Saturdays? Oh, she is on vacation. They said the didn't know if Stephanie could work all Saturdays. I said, "So how am I going to know who's working on which Saturday? Just see who I get when they come through the door?" I thought we had the schedule all worked out now. The conversation I had with them made me think that Stephanie isn't on vacation at all. They just screwed up. That's fine. When she comes back here, I'll ask her how her vacation was and if she tells me she wasn't on vacation I'm going to call the nursing company and GO OFF! I've already caught them in a lie and they have screwed up numerous other times. Chris has pretty much reached the end of his rope with them. I'm getting a bit irritated myself. So, this new nurse will come on Saturday 1/2 hour early so I can orientate her. (Which takes an hour.) Then I won't sleep because she will be new and I won't trust her and I'll worry. Sometimes it seems like it would be easier if I just took care of him myself at night. Hopefully it will go OK.

That's about it for now - Kevin is upstairs screaming his little head off. Aunt Alice is probably changing his diaper. I'll go check on my little guy. He needs a bath too so maybe I'll get that done.

Take care everyone!

Friday, July 9, 2004 11:13 AM

I only have a quick minute. Kevin is taking a little nap upstairs after having his tubby this morning. It wore him out. He's doing pretty good. He was a little fussy the past couple of days. Wanna guess why??? He cut a tooth!! A little, itty, bitty tooth has come in on the bottom! It's so cute! The doctors told us that Kevin wouldn't grow any teeth because he wouldn't grow and he wouldn't get to that stage nutritionally to be able to grow teeth. I guess they were wrong! I weighed him too. But he has gone down to 13 pounds 9.5 ounces. I'll weigh him again in a week or so to see how he's doing. I also bumped him up to 33 cc's per hour this morning. Gotta run! I have to keep an eye on him! Take care!

Tuesday, July 6, 2004 2:35 PM

Sorry, I haven't been able to use the computer so I couldn't update his website. There was so much "spyware" in the computer that I couldn't get it to work! Luckily my sister works in the computer field and she got us all fixed up.

So, the last you heard, we were waiting for the new nurse to start for Saturday nights. Her name is Stephanie. She was really good! Surprise, surprise! She is 42 years old, has a 10 year old and 17 year old and has common sense to boot! She was very motherly to Kevin. Unfortunately he cried alot that night. He's feeling OK though. I got the results from his latest blood tests and his bili count is down to 13 now. All of his liver functions are doing OK. Dr. Schwarz is preparing letters to the cardiologists at the Mayo clinic and Children's Hospital in Cinncinnati. If they feel that they can help, then she will go ahead and send them copies of his latest catheterization and cardio stuff. Hopefully someone will be interested in helping us. Keep your fingers crossed!

The man from the cemetery wouldn't call me back. He had to check with the manager to see if we could put a bench by our gravesites. Finally, after 4 tries, I got a hold of him and he had an answer. No. The manager said they aren't going to put any benches in that area right now, if ever. I said, "So that means no." This guy said, "No, that doesn't mean that they won't change their minds later." Sure, so the manager is just going to get an idea in his head one day that they will go ahead and allow a bench in section 15-9. Gimme a break! The thought of it won't ever enter his mind. I guess I'll just have to plop a big ole picnic table out there. Or a lawnchair. Maybe I'll even sit in my lawnchair naked until they decide they will let us have a bench there. I'll get my bench. Not now, but eventually.

Oh, the manager and assistant from the nusing company came by last week to meet Kevin. They stayed for about 20 minutes. They want to make sure we get quality nurses and don't have any problems, blah, blah, blah. So it didn't sit well with me when the frickin nurse didn't even bother to show up last night! I called the company after 11pm and asked where she was. They told me that they tried to call her at home and on her cell phone and she didn't answer. So, I was up with Kevin. Luckily he slept alot this morning so I got a 1 hour nap. I told the guy on the phone last night that I wanted to know the excuse once they finally got a hold of her. They haven't contacted me. They said that she was aware that she needed to be here every Monday night to watch him. I think the only acceptable excuses to me right now are that she was killed or abducted by aliens. Even if you were in an accident, someone can call for you. I will also accept a coma. But I would assume someone would call her job for her in that case. I dunno. We'll see. If I don't hear from them - I'm going to have Chris call. Then they'll be sorry. He isn't as nice as I am when it comes to this stuff.

We will be getting new pictures up shortly. Lots of smiles for you to see!

Take care everyone! I almost forgot...Kevin was weighed last night and he was 13 pounds 11 ounces (with a wet diaper on.)

Wednesday, June 30, 2004 2:31 PM

Kevin has been pretty sick since Sunday morning. The new nurse that came Saturday, Lucy...fired. Not fired from her company, but she won't be coming back to our home. She had orientation for Kevin 2 nights prior to coming on Saturday. I know that Mika had reviewed everything with her. I was in bed at the time, but I heard Mika in the kitchen with her going over his formula and telling her to shake it before using it. I assumed Lucy would have retained the info that Mika had told her. Unfortunately, she didn't. (Actually, Chris and I just refer to her as "Stupid" now.) Chris got up to go to work this weekend and went in the fridge to get his milk for his cereal. It was almost GONE! Where was it? IN KEVIN! Stupid had been giving our son Vitamin D, whole milk all night long! Chris got me out of bed because we had to get Kevin back on formula. Chris asked Stupid how much milk she had given him and she said she didn't know, that she would have to check. She looked like a deer caught in the headlights. Chris kept his cool with her - but it was hard. She said that nobody had told her where the formula was so she wasn't sure. HELLO...did you ever think to ask? I had told her twice that night that I understood it was her first night and for her to come and get me if she had any questions. She never did. I also asked her if Mika had showed her the formula. She told me 'no'. I knew she was lying because I had heard Mika tell her that night. We called the hospital GI doc on call to ask them if everything would be OK. He said that Kevin would have stomach cramping and diarrhea. He also asked how something like that happened and he had never heard of anyone making that mistake before. Well, the nurse left and Mika came the next night. I asked Mika if she had shown Stupid where the formula was when she orientated her. She said she did. She said that she had to show her how to open the lid and she told her to shake it over the sink each time because sometimes it would leak. They had to refill Kevin's bag at that time so Mika was showing Stupid hands on. So, after I had double checked with Mika, I called the nursing company. I asked to speak to the manager. Of course he was in a meeting (yeah right). I told her girl on the phone what happened and she said the usual, "We have never had problems with her in the past." Well I guess we just bring out the ignorance in people when they come to watch Kevin. I told the girl that the nurse was nice and she was sorry. But she had no common sense. If you have no common sense, you can't watch our child. Kevin was VERY sick on Sunday. Respirations at 100 breaths per minute (he should be in the 40's), fever of 102 degrees, gagging, vomiting and diarrhea. I'm not sure if all of this had anything to do with the milk incident, but it seems so. Kevin is just now starting to feel better. He had a couple of bad nights and days. We kept praying that he would feel better and he seems to be getting over it.

Last night Mika was supposed to come at 10:30pm. She didn't arrive until 1am. I received a call from the nursing company telling me that she would be 30 minutes late. At 12:30am, I called them and asked where she was. The man said that he called Mika's sister and she said that she had left 1 1/2 hours ago. I said, "then she must be in a ditch somewhere because it doesn't take that long to get here." I asked him to call her on her cell phone to find out where she was. I needed to know if I needed to start chugging Coca-Cola to stay awake with Kevin all night. He told me that she didn't have a cell phone. I said, "Bullshit Mike. She has a cell phone. I've seen her using it. Call her and find out where she is and call me back!" He called me back and told me that she would be there in 15 minutes and that he sister had borrowed the car and just brought it home. That didn't make sense to me. I asked, "So, which is it? She left 1 1/2 hours ago or she just left? You are giving me two different stories." Then I said, "You know what? I really don't care right now. I'm too frickin tired to deal with it." He apologized and hung up. I briefly spoke to Mika when she arrived (because I was tired and had to get up in 5 hours!) She told me that she told the nursing company at 8pm that her sister needed her car and she wasn't sure if she would be able to make it at all. They told her to "try". So the nursing company had lied to me when they said she was on her way and going to be 30 minutes late. She hadn't even left the house yet! They hadn't even spoken to her. He also lied a second time when he said that she had left 1 1/2 hours prior. I haven't spoken to the nursing company yet today. I'm going to tell them that their communication skills suck. (But in nicer words.) And in the future, if there is ANY question about someone being able to be here on time (or at all), they need to call me when they find out so I can be prepared. They tried to bullshit me last night and that makes me very angry. I found out last week that they were trying to get Mika to take an extra day for Kevin. They had called her at 8:30pm and she said that she couldn't because she had a few drinks in her and shouldn't drive. (Her divorce was finalized and she was celebrating.) They said they would pay her $25 an hour. She said again that she couldn't drive and she had been drinking. So they offered her $27 an hour. She told them that she wasn't coming. That infuriated me. How dare them try to get someone to drive under the influence and then try to take care of my child. She also told me that if a nurse tries to call in sick, they still have the nurse go to their client. I told her that if anyone comes here sick, they will be turned away. That could kill my son. The administrative people at this nursing company are all in their young 20's. They have alot to learn. I'm thinking about switching to another company. It would be like starting over, but this is ridiculous.

Well, momma bear is grumpy from writing about this so I guess it's the best time for me to call the nursing company!

Saturday, June 26, 2004 12:00 PM

We're still here. I know it's been a while - things have been a little hectic the past few days. A nice couple in Wyoming won Gracie's auction on e-bay - I'll be shipping her butt out in a couple of days! Gracie, Gracie, Gracie...where do I start...She developed a fever at Nina's house on Tuesday. The next morning it was over 102. So she needed to stay home with me. Gan, Grandma and Aunt Alice had shifts with Kevin while I took care of Gracie upstairs. At first it wasn't so bad because she didn't feel so well. She just layed in bed with me and watched TV. THEN she started to feel better...she got demanding! "Mommy, I'm hungry. Go get me a snack and bring it to me in my bed." Huh? "I want peanuts." "I want water." I'd get the water. "No, I want juice instead!" "No, not the pink cup, the blue cup." She's lucky she's still alive. And she's NEVER, EVER, EVER, EVER allowed to get sick again! I think she has promoted herself from Princess to Queen! She was home with me for 2 days and then she had to go to Gan's yesterday because we took Kevin to the doctors. (She also thinks that her pee is blue now. We have blue water in the potty. I think it's funny to hear her talk about her blue pee-pee after she goes. She won't listen to me when I tell her it's just the water.)

The nurses seem to be working out OK. The woman that came the other night was pretty good. Antonia. She was young and very caring with Kevin. She was also very religious. She will be working with us on Monday nights. Mika will have 5 nights and another nurse, Lucy, will have Saturday nights. Lucy came out the night before last to orientate with Mika. She got lost and called me from about 2 miles away (if that far). I knew where she was and told her how to get here. I stayed on the phone with her. She didn't listen to my directions and got lost. FINALLY, she got here after 35 minutes! When she turned on to our street, I told her the address and that we were on the 2nd block with a white van in front. She pulled in front of another house on the first block. No van. Different address. I said, "Do you see 402? Do you see a white van?" "No. it's 502." I told her that she was on the first block and needed to come to the 2nd block. Again...white van. 402! Once I saw her headlights I hung up and went upstairs. I told Mika she was here and asked her to get the door. I was so frustrated with her I didn't even want to meet her at that time. I didn't get to bed until almost midnight and I still have to get up early to relieve the nurse and take care of Kevin. I asked Mika in the morning what she thought of her. She said she was ditsy and didn't think she could handle an emergency. Lucky we are there I guess. If she does OK, she can stay. If not, I will tell the nursing company to get me someone else for Saturday nights. She comes tonight, so we'll see how she does. That means no sleep for mommy tonight!

Kevin went to the doctor yesterday. The social worker and Patient Advocate, Barb, were there waiting for us. Boy they thought Kevin looked great. Everyone kept commenting on his huge thighs. Barb had arranged for Chris and I to meet in a back room with a pediatric doctor who works primarily with hospice. Her name was Dr. Hutton. She was sweet. She understands what Chris and I need right now. She is going to look through Kevin's chart and call us back. She will be able to tell us what types of things we can expect from Kevin's condition. She said she will also be available to us in case something comes up and we need to aske questions. (Like with his rapid breathing.) By the way, we were told by Dr. Schwarz that is from his enlarged liver pressing on other organs which then press against his lungs. And the morphine is fine to assist with that problem. So Chris and I are relieved that we have someone to call if we need help. Kevin weighed in at 12 pounds 15 1/2 ounces! Half an ounce short of 13 pounds! If he hadn't peed before getting weighed he probably would have hit 13 lbs! He is also 24 inches long now. The doctor said he looks better now than he did 6 weeks ago when she saw him. Other doctors that had helped Kevin while he was in the hospital were there and couldn't get over how good he looked and how large he is getting. He needed some blood work while we were there too. When I was checking out of the GI area, paying for his visit, the woman told me that I couldn't get his blood drawn at JHU. I told her that we pay for it out of our own pocket. She told me it would be "approximately" $156. OK...then she told me I had to pay HER. Why? We never have before? She said they needed to collect "something". I asked, "What if it's more or less then your approximation?" She told me then they would send me a bill. I told her I wasn't going to pay her because I never had before. She caught a little attitude and told me I wouldn't be able to get his blood work done. I told her I was going to try. So, we went down to get his blood done and they had no problems whatsoever. Unfortunately, when they called his name to come back to the lab, he had just pooped OUT of his diaper into his clothes and Chris was outside. I was helpless. I couldn't put him down because I would get poop everywhere. I told them that he had an accident and we would be ready in a few minutes. Chris saw me standing with him and came back in because he thought something was wrong. He helped me change Kevin's diaper and clothes and then we went back for the blood draw. It went amazingly well. He didn't cry at all. Just a wince when they stuck him. The GI doctor wants us to bring Kevin back next week to get the Alagilles testing done again. I think we might. We don't want Kevin to go through the pain of getting stuck. But if they have someone who can do a good job - he won't be in pain. Chris and I still have to talk about it. We were also talking on the way home and we would like for Kevin's information to be sent to Children's hospital in Cincinnati. We were also watching TV last night and we decided to also have it sent to Mayo Clinic. It can't hurt. If these 2 places tell us "no", then we'll stop. But we want to look into this a little further.

I hear Kevin's timer going off. It's time for his noon medications.

Monday, June 21, 2004 2:28 PM

Kevin is doing OK. He is still having some respiratory distress and needs morphine to control it. He doesn't need it around the clock, but he's needing it more often. He goes to the GI doctor at JHU on Friday. He has good days and bad days. Sometimes he is very alert and happy, other days he is lethargic and weak. We just thank God for each day we have with him and pray that the next day will be better for him.

Gracie's "Princess Party" went very well. She was absolutely horrible before the party and afterwards. I understand afterwards because she was so sleepy - but jeez! Her e-bay item number is 544859832 if anyone is interested. (Just kidding.) But man was she close to getting put up for auction! She was pretty good at her party. Almost everyone who was invited got to come. I think everyone had a good time. The cake Aunt Alice made for her was absolutely wonderful! We took a picture of it so we'll put that on the site for you. She wanted to blow out candles and sing "happy birthday" so we did that and she was so excited. Gracie also received great gifts - of course they all had to do with the "Princess" theme. It was a wonderful day and we thank everyone for coming!

The nursing thing....well....that kinda sucks. I had called the nursing company on Friday and told them that we wanted Mika 5 nights a week. I told them that Sleepy could be here the other 2. They told me that Sleepy was being pulled off and put on her old assignment and Mika would be full time here. We just needed to get another nurse for the other 2 days and Mika needed to decide which 5 days she wanted to work. Great right? Well, the next night Mika said that she was being put on another job for Sunday. Why? She didn't know. I was told by another person at the nursing company that we were getting Sleepy back for a night, and then two other nurses for the next 2 nights after that. I asked her about having only 2-3 nurses to watch Kevin. I don't want somebody new every night and that was one thing I asked about before I hired their company. They told me we would only have 2-3 nurses. So what's going on? She called back again and Chris talked to her. We found out that this person hadn't spoke to the other person in the office who said that we could have Mika 5 nights. Chris pretty much told them to get their crap together and give us a call when the correct schedule has been set. So, we had Sleepy one more night. After she left in the morning she told me that she probably wouldn't be back. OK, fine. Last night, we were supposed to have Hannah. Hannah called me at 10:30pm because she was lost. Hannah's english skills stink!! I think maybe she was Haitian. I don't know. I didn't find out because I made her leave the house 3 minutes after she arrived. She came in and she was really weird. She looked sleepy or stoned. I don't know which. I asked her if she had just come from another job. She said she had. I asked if she would be able to stay awake to watch my son. She shrugged her shoulders and asked where he was. I told her he was sleeping. I asked her again if she would be able to stay awake to watch him. In so many words, she said no. And then asked what was wrong with him. I told her in as few words as possible. I told her that she needed to go home and get some sleep and I would watch Kevin instead. I made it seem like I was sending her home for her own benefit. I can tell you there was no way in hell that I was going to let that woman watch my son. I didn't even let her in the house 3 feet past the front door. When she left she said she was sorry and said she hoped she could come back another time to watch him. Sure Hannah...(when I grow a third boob and a tail). So I guess that's NEVER! (Hopefully). Then I called the nursing company and left a page. Before they called me back, Hannah called. She didn't know how to get home. So, I have her directions to Peoria and wished her luck. No - I wouldn't do that! I got her home - I hope. Then the nursing company called me back and I told them what happened. I told them not to send her out to my home again. They apologized and said they have never had problems with her before. Well, then send her back to those other clients - but not here. They also told me that she didn't come from another job before this one because they had told her not to go and had someone fill in for her. They knew she would have to be awake for this job so they gave her the night off of the other position. I told the nursing company to get the schedule straight and to get back to me today. I haven't heard yet. I know we are getting another new person tonight. Let's see, I've had Happy (Mika), Sleepy and Dopey. Who do you think I'll get next? I also had told the nursing company that they need to fill each other in with Kevin because Dopey didn't know what was wrong with him. Plus, when we get a new nurse, I don't get to bed until after 11:30pm because I have to teach them about Kevin and how to care for him. The nursing company said that they HAD told Dopey what was wrong with Kevin. And they would try to get the new nurses to orientate for 1 hour with another nurse while they were watching Kevin. That hasn't happened. So, I guess I'll be getting to bed late again tonight. I got a nap this morning - but it took a while. I layed down after 8am and there was a stupid helicopter outside the house. It sounded like it was going to land in the front yard! I figured there was an accident and it would go away. Twenty minutes later...still there. Another 20 minutes later....still there. I couldn't sleep. I came downstairs to look outside and it was hovering in the air about 2 houses up the street. Something was going on at the Metro station. I watched the news and they had finally opened up the Metro station so I figured it would be going away so I went back up to bed. That damn thing hung around for another 15 minutes! I did get some sleep in. But not nearly enough. I think I'm staying awake just from pure frustration from everything going on.

I'll let you all know what character I get tonight and let you know how it went tomorrow. Take care! (And I hope everyone had a wonderful Father's Day!)

Thursday, June 17, 2004 3:20 PM

It will be a quick entry today. I have lots of things I have to get done before Gracie gets home. Kevin was having issues with his breathing this morning and the morphine wasn't really working so I've been parked on the couch next to him all day.

We did get the results from Kevin's blood work that was done a week ago. They didn't get all of the testing done because he stopped bleeding - but they got more tests done than I thought they would. The only thing that was a problem was his iron. He is very low. They have placed him on iron supplements twice a day. I told hospice and the iron was delivered to me the next day. They are quite efficient when it comes to his medication needs. All of the other levels for his liver functions are good. As a matter of fact - they just keep getting better. Everything that needs to get higher - gets higher. Everything that needs to go lower - is getting lower. His bili count is down to 19 from 21. His blood counts are good, protein levels are good and all that other stuff that I don't really understand. But they tell me they are pleased with his results.

The patient advocate from Johns Hopkins, Barb Hall, called today. She is going to help Chris and I speak to someone about Kevin and what to expect with his condition. It is a female doctor that is in charge of the hospice program there. I was told she is very nice and she understands what Chris and I need right now. We will meet her next Friday briefly to set up a phone meeting with her. She has to leave for a conference shortly after Kevin's GI appt.

We had a new nurse last night. Meeka. She was wonderful with Kevin. She will be here 2 days a week and the other nurse (Sleepy) will be here 5 days a week. I honestly want them switched. But I don't want to hurt Sleepy's feelings. Meeka was very thourough. She was just great all around and I was very pleased. I slept better with her in the house on her first night rather than after 5 nights with Sleepy in the house. I don't know what I'm going to do. I really want her to take care of Kevin the majority of the time. But maybe she can't even do full time....we'll see. I need to think about it.

Gracie's party is 2 days away. She wakes up every morning asking me, "How many more days until my Princess party mommy?" Then I tell her and she claps her hands and says, "Yeah!" Also, our hot water heater is broken (like we need another problem around here), she came down with me at night to see if we could re-set it. I couldn't. It was dead. So I told her it was broken. She grabbed a hold of my hand to walk me away from the heater and she said, "That's ok mommy. We will get batteries for it in the morning." Then she walked me upstairs and we went to bed. Isn't she a hoot?

Well, I have to change baby Kevin's bed linens. He poopied in the bed last night. (And I have to look for a new water heater!) Take care everyone.

Also, in case you were wondering...I have not received any response from Dr. Spevak. Go figure.

Tuesday, June 15, 2004 1:53 PM

I weighed Kevin today...12 pounds 3 ounces! But that was with his onsie on. And they said he wouldn't grow...

The Corazzi's, friends of Chris's brother and sister-in-law had a birthday party for their one year old twins this weekend. They asked that people bring donations for the Ronald McDonald House in lieu of gifts. They raised $500! Amazing! The RMH helped Chris and I when we needed it. They made it so we could be close to Kevin when we needed to be. We thank the Corazzi's, and their friends, for their caring and generosity. Thank you so much!

Kevin only had morphine once yesterday and that was in the morning. He didn't need any before he went to bed. I got up at 1am to go potty and stopped in to check on him. The nurse said his respiratory rate was 66-67 and he had been like that for a "little while". He was also very sweaty from breathing so hard. I went and got a dose of Morphine and drew up a second dose in case he needed it. He can get 1/2 dose 30 minutes after the first if the first one didn't work. I gave him the first dose and let the nurse have the 2nd. Then I got a cold cloth to wipe his head. I stroked his forehead until he fell asleep and then I went back to bed. She told me this morning that she was thinking about coming to get me for a 3rd dose - but she wasn't sure if he could have it. I was a little upset with the nurse because I had told her EVERY night since she started, "If his respiratory rate goes over 65, call me." Last I knew, 66-67 was over 65. It was also obvious that he was in distress because of the sweating and she just let him lay there. I'm going to say something to her tonight. I explained to her last night about how important it was that she is awake and alert for Kevin and she understood. Then I gave her a deck of cards and went to bed. I figured that could help keep her awake. I don't think she used them. She is back tonight and then we have another nurse for 2 days before she comes back again. So I have to "train" another nurse tomorrow night. He has a lot of little quirks that they need to know about.

I also got my e-mail to Kevin's cardiologist out of the way and I feel better about it. Letting that bother me was taking up too much of my time. Now my problem is that I'm worried about his response - if there even is one. I really hope that he doesn't come back and be crappy with me because that will just make me more angry. So, here is my e-mail that I sent to him:

Dr. Spevak - I have been thinking about our conversation that we had last Monday about Kevin and I wanted to write you to let you know how I feel. I called you because Kevin was having breathing problems and I was concerned. I didn't know if this was something to expect as his condition deteriorated, if this was a sign of a possible infection, if it was a signal that one of his medications needed to be increased, etc. My husband and I weren't told about what to expect with Kevin's condition. No signals or signs to look for - if there were to be any at all. All I knew that day was that Kevin was uncomfortable and I was scared for him. So I called you. I appreciated you calling me back, but I don't feel that I was given any help. I felt like I was bothering you. You told me, more than once, that Kevin was going to die and there wasn't anything that could be done about it. I know my child is going to die Dr. Spevak. I've made his funeral arrangements. I've purchased his cemetery plot. I don't need anyone to reiterate to me that Kevin is going to die. I wasn't calling you in the hopes that you would be able to cure my son of his illness. I just wanted some guidance. You told me that it is best to just keep him comfortable at this point. How was I supposed to make him comfortable in that situation? You didn't say. You did tell me that I could take him to his pediatrician. She doesn't even know Kevin. She's never treated him. You were familiar with him and I assumed you could help us. If Kevin gets sick with an infection that can be treated, he will be treated. We aren't going to just let him die from something simple. If I had that attitude - he would have died 2 months ago from the Cholangitis. He was treated and he's been a joy to us these past 2 months. I was told when we left JHH that we weren't being given up on. Well, honestly, I feel that from the cardiac standpoint - we have. I understand that Kevin doesn't need any follow up for his heart and no longer needs appointments. But I thought I could call for advice and support. You offered to set up a meeting with everyone. A meeting where Chris and I can be informed on what to expect with Kevin. I have canceled that request. I will get my information elsewhere. Please know that Chris and I greatly appreciate the care that you and your staff gave Kevin. Thank you very much.

Karen McLane

I think I got my point across. It was a little harsh - but not too harsh.

I need to get going. Kevin's Great Grandma is watching him while I update his site and I need to get a couple other chores done while she is here for me. (He was so cute a little bit ago. I gave him a cherry popsicle and he kept reaching up to grab it. He also kept sticking his tongue out to lick it. He loves his popsicles!) And we have 2 roles of film that are being submitted for processing tonight. We should have them back by Thursday and get pictures up shortly after that! Take care everyone!

Monday, June 14, 2004 11:58 AM

Kevin is hanging in there. He still gets morphine for his breathing, but he doesn't need it around the clock. I'm getting used to having the nurse around at night and having her help with Kevin. I have jumped up a couple of times when I hear him cry, but then I remember she is here and I get back in bed. He has been sleeping really good for her these past several days, except for 1. Saturday night he was gaggy and threw up alot. He pooped 3 times and once she even had to change his outfit. She came an got me after midnight because she was concerned. I told her that it was normal for him and just to make sure she picked him up over her shoulder when he would get gaggy and comfort him. I'm sure you all remember that he was throwing up and gaggy alot after he got home. He's been doing really well with it in the past few weeks. So the nurse hadn't seen him act like this before and she was worried. He didn't sleep much that night. I went in the room at 4am because he was screaming and when I was going down the hall, his alarm went off. That thing is louder than a smoke alarm. You can't turn it off until you correct the problem. One of his leads had fallen off so I had to hold it on him while I turned off the monitor. I just left the leads off for the rest of the night. I thought since he had such a bad night that the day wasn't going to be much better - but it was. He received morphine at 7am and didn't need it again until dinnertime. He was happy and smiling a bunch that day.

Saturday we had some friends over and they cooked out. I didn't have to cook! (Not that I do much of that anymore anyways.) It was really nice. Kevin was awake alot and got to visit and Gracie was a charmer. I think I'll make out pretty good when I put her on e-bay! Chris' friend/boss, Jim, also told him that he donated 4 days of his leave to Chris to cover the 4 days he was out last week making the arrangements for Kevin. We really appreciate that. Chris wasn't going to get paid for those 4 days if he hadn't done that for us. We could get by - but it really helps, especially with the bills we have for Kevin.

Last night Kevin slept pretty well. So well that the nurse fell asleep. I went to potty at 3am and saw her sleeping. I figured maybe me flushing the toilet and the door making noise would wake her up. Nope. So, I stood in the doorway and called her name. Five times! I just got louder and louder until she woke up. She looked at me and I just stared at her for about 3 seconds and walked away. I didn't say a word. I gave her that "mother look". I think she got the picture. She didn't apologize this morning, but she did say, "Thank you for waking me up." I have thought about it and I'm going to say something to her tonight. I'm going to tell her that Chris and I understand that it's boring when Kevin is sleeping. But we need someone watching him. If he gives any kind of sign that he is in distress and he may be passing away - someone needs to see that and come and get us. We don't want to miss that moment. We want to be there with Kevin and that isn't something that we can get back if it's missed. I think she'll understand and won't fall asleep again. If she does - I'll just have to wake her up again, but by wringing her little neck. (Mommy has PMS - can you tell?)

I can't remember if I told you that Gracie started talking about having a Princess party at Gan and Pop's with a purple cake. She's going to have it on Saturday and she is SO excited. (So am I.) I figured it would be good for her right now and she never got to celebrate her 2nd birthday because that's when Kevin got transferred to JHU for the liver surgery. I went shopping with Mom and Grandma on Sunday and got the "Princess" party favors and decorations. It will be outside and they can play in the pool and "slip and slide". She wants her 3 male cousins to come too so I purchased them their own party favors. I don't think they would be interested in body glitter, jewelry or lipgloss. One thing I got for them is tatoos. (Those things aren't cheap!) If there is one left over I'm going to put it on Kevin and take his picture. I'll make sure we get lots of pictures!

I have to run - it's time for Kevin's noontime medications.

Thursday, June 10, 2004 9:12 PM

Lots has happened over the last 2 days. Kevin is doing OK. He still has very rapid breathing and he gets morphine when it gets a little too fast. We took him yesterday morning to get his blood drawn at another Labcorp office. (By the way, I'm going to make a formal complaint against the other office and tell them that they need to change their procedures when it comes to terminal or immunosuppressed patients.) This office had us wait for 40 minutes. They did have the new request that we needed. We went back to the drawing station and we asked how many cc's of blood they needed. (Kevin has had all of these tests run at the same time before and only needed 6 cc's of blood.) The man told us he needed a minimum of 15 cc's! WHAT? Chris and I both freaked at the same time. Kevin has NEVER had more than 6 cc's of blood taken at one time. And that was only once. There is a maximum you should take according to the child's weight. I told Chris to call the GI nurse (Mary Kay). He got her on the phone and she talked to the lab technician. She got him down to 10 cc's. But Kevin didn't bleed enough for that. He stopped bleeding at about 4 cc's. So they told us to come back this morning to try to get the rest done. Kevin's breathing and sats weren't very good this morning so Chris and I decided not to take him. Maybe another day if he gets better - or maybe not. When Chris and I were waiting in the Labcorp office I had mentioned to Chris about maybe not putting Kevin through the blood tests any longer. He agreed. If his liver funtions come back the same or better as they have been in the past - we will just stop getting the blood tested. The liver problem is secondary anyways. Kevin's heart is going to be his ultimate downfall. I called Mary Kay today and told her that we probably wouldn't be taking Kevin back for the rest of the blood work that wasn't done and she understood. She said she wanted to see him because she was going through "Kevin widthdrawl". She will see him in 2 weeks when he goes for his next appointment. She said that she was sorry that we had to go through all this. She wanted us to be able to enjoy Kevin's time at home and not have to deal with this stuff. But we don't have a choice.

I also had my meeting with Dr. Uma yesterday afternoon. When I arrived in the office, the receptionist immediately told me that she was disgusted with Dr. Uma and the way she was handling the situation. She told me that she hadn't really spoken to her in a week because she was so upset with her and that she was even thinking about looking for another job because she didn't agree with her morals. Her name is Peggy. And she is just in love with Gracie. I told her that she probably wouldn't see her again because Gracie isn't due in until December (and she never gets sick) and Dr. Uma wouldn't be our physician by then. She totally agreed with me switching to another doctor. So, I handed over my check for $150 and waited for the other people to arrive for the meeting. We had the meeting and I really didn't speak much to Dr. Uma. Only when I needed to. One thing that was brought up was whether or not Kevin was to be resuscitated. I hadn't spoken to Chris about it and I wasn't sure what he wanted. My feelings are to let Kevin go when the time comes. So, we left that part blank. After the meeting we got up to leave and Dr. Uma asked for me to stay. I had told her earlier in the meeting that Chris and I didn't know what to expect when Kevin's time comes. So she wanted me to stay so she could talk to me about that. She said that the best thing for Kevin would be for his heart to just stop. But, unfortunately, sometimes it is slower than that. The heartbeat may slow down and stay slow for hours before it stops. Same with his breathing. She suggested that if he gets like that, that we not perform CPR and it would be best to let him die. I agree. He could be kept alive by machines but there isn't any point in putting him through that if he can't recouperate from it. So, at least she gave me some info that was helpful. I told her I needed to leave to get back to Kevin. When I walked out of her office I noticed that it was dark. I asked if she was off for the day and she said she was. She is off 1/2 day every Tuesday. But she told me before that she didn't have the time for the meeting....she meant she didn't have the time until we payed for it. So, I walked away from her and started to say goodbye to Peggy. She wanted me to give Gracie some lollipops so she ran in the back to get them. When she was walking back, Dr. Uma asked her if she got the money from me. She said yes - and she was snippy in saying it to her because she was angry with her. Dr. Uma said, "Give it back to her." And walked away. Peggy gave me a huge hug goodbye and I left. I spoke to Chris about the resuscitation and Chris didn't agree with me. We addressed it again this morning and Kevin will not be resuscitated. We have to put it in writing and have it signed by witnesses for the nursing company. Because if we don't have that - they have to perform CPR and call 911 for Kevin whether we want them to or not. I have signed the papers and Aunt Alice and Patty signed them tonight - so that's out of the way.

Shortly after I got home yesterday the representative from the nursing company came by to do paperwork. She was here for 2 hours! I'm not gonna go into all that. But we got our nurse last night! I slept (a little). I would wake up every time Kevin cried - but I forced myself to stay in bed. The nurse has a quiet personality. I did notice that when she was calming Kevin down, that she didn't speak to him. (I have a monitor in my room.) I'm going to tell her tonight that he likes to be talked to and it would help him. I have a hard time because I want to be the one to help him and I know I'm better at it - but I just can't do it. I need the help. And I feel guilty too. Hopefully it will get easier for me.

Chris and I also went to the cemetery today. It's really nice. Mom and Dad have plots there - but I have never been inside. We went to a section where the counselor said he thought we would like it. We decided that we wanted to be near a tree. We found two spots behind trees that we liked. Then we went back to the office to make sure they were still open. The place we picked as our number 1 choice was open. Chris and I are pleased with the decision. We also inquired about a bench to be placed under the tree. They cost $1000 and have to be approved by the manager. They can't have benches all over the place. Only where it was appropriate. Luckily - this spot seems appropriate. I will know by Monday if our request is approved. If so, Chris and I will purchase it now so it can get put in place. The plots are paid on a payment plan over 2 years. But when we need Kevin's - we have to pay the remaining balance for his site at that time. We can still make payments on the other plot.

Father Val called today and Chris asked him if he would perform the funeral ceremony for Kevin. He agreed. So, most of the plans are in place. We just have some minor decisions to make. The last main thing I need to do is get with the person at the church to figure out what music and readings will be said for his funeral ceremony. It really stinks to go through all this - but it's so much better getting it taken care of now rather than trying to get it done in 2 days after Kevin passes and I'm a sobbing mess.

I have to run. Gracie isn't in bed yet and poor Aunt Alice needs to go home and get some sleep too. She's watching Kevin while Chris watches Gracie. I can't update his site with her around.

Tuesday, June 8, 2004 8:57 PM

Well, Kevin slept pretty darn good last night. I guess morphine can do that to you. His breathing stayed rapid. I gave him another dose at 1am and left it at that. I stayed awake the majority of the night because I was worried about him and I had a bunch of other things running through my head. Part of it was that I was still angry with the cardiologist. I'm going to send him an e-mail letting him know how I feel about our conversation yesterday. We were told that Hopkins wasn't going to give up on Kevin. Well, Chris and I feel that they have. At least from the heart standpoint. We know they aren't going to cure Kevin. But damnit - if he gets ill with something that can be fixed - fix it! He said that there wasn't anything he could do and the goal was to just keep him comfortable. What did he do to help me make Kevin comfortable yesterday? NOTHING! He didn't recommend morphine for his breathing. He didn't recommend crap. Luckily I had the hospice people available to help. Obviously this guy really got to me. I don't have the time to deal with him tonight - but believe me...he will hear from me shortly. What a jerk. What makes him even more of a jerk is that he said he would fax a prescription for Kevin's blood draw to Labcorp and he didn't. Labcorp is also a joke. I called this morning for almost 2 hours before they would answer the phone. Finally I got someone on the line. I asked if Kevin's paperwork was there. I specifically asked if there were 2 requests. (One from the GI people and the new one from Spevak.) She put me on hold and told me there were 2 requests. I asked her if I could make an appointment so Kevin didn't have to wait so long like last time. She said I couldn't make an appointment, but to come in now because they didn't have any patients and it was dead in the office. No patients? Then why in the hell haven't you been answering the phone? Whatever. We packed up the baby - no easy chore -and went in. A man walked in with sores on his body. I prayed to God that he wouldn't sit near us because I wasn't sure what was wrong with him. I didn't want it to be something that could get Kevin sick. The room only had 2 other people in it. But sure enough he sat right next to us so he could ask us questions about Kevin. I think they were sores from chemo or something - I didn't ask. Anyways, it got to be our turn for the paperwork. Chris went up and discovered that they only had one request. ONE, not two. Spevak hadn't sent in his request. But the person I spoke to in the morning before we left said there were 2. I asked about that and they asked who I spoke to. The girl said, "I have no recolection of that call." And then I pointed right to her face and said, "You are the one I spoke to and you told me that there were 2 requests here!". She wouldn't even look at me and she just denied it. The only thing we could do was call the GI nurse and ask her to send us the request that Spevak never sent. I left her messages - but she didn't call back quickly - so we had to leave. Chris and I figured we would work it out from home and I would take Kevin back tomorrow. But I'm not going back to that office. If I do - I will take a gun with me. So it's best I just stay away from that place! So, Chris and I figured we would go ahead and get the cemetery plots taken care of today. I called them and they said we had to make an appointment and they couldn't get us in until Thursday afternoon. Sigh...Well, we didn't want the day to go to waste since Chris was off so I called the funeral home. He said we could come in and speak to them. I started to cry about 1/2 way there. God - it was so hard. The man at the funeral home office was great. Very patient and calming. Chris and I had no idea how much there was to take care of there. We got everything taken care of. Casket, flowers, prayer cards, etc. Chris and I need to pick paul barrers which we have some time to do. I also need to work on the death notice for the Washington Post. I also need to pick up a small cross for Kevin's casket. The ones they had there were too large. Normally we would have received one as a baptism gift, but Kevin was baptised (baptized?) at Shady Grove hospital in the NICU. We were planning on having him baptised in the church after he got better - but he never really got better. We also need to get with the church to make those arrangements. It got easier the longer we were there. I told Chris that I had to stop crying because they were running low on tissues. I even cried when we were picking out the flowers for his casket. That was because I kept picturing Kevin in the casket and it was just killing me. Well, we finally got out of there. It was a good thing we got it taken care of because I wouldn't want to have to do it after Kevin passes away. We made it home and I got in touch with the GI nurse. Unfortunately she called me on my cell phone while we were making the funeral arrangements. I was a blubbering idiot and Chris had to take a message. She has now sent a new request for Kevin's blood draw (including what Dr. Spevak needs) to the new Labcorp office. I will check tomorrow before I go to make sure they have it. That better work.

The social worker from JHU also called this afternoon. He asked if Chris and I wanted a family meeting. He said that he received the request from the cardiologists office. I told him we didn't want a meeting. I told him about my problems with Spevak and told him what Chris and I want. We want someone to tell us some of the symptoms to expect for Kevin's condition. What's normal? What's not? We need some insight in all this. I'm home with Kevin alone during the day. I don't know what to do or how to react if something goes wrong. They never reviewed that with us at the hospital. I know CPR - but depending on what's happening at the time - I'm not sure CPR would be the best thing for Kevin. These are all things we need to review. He totally understood and agreed that Dr. Spevak's response to me was unacceptable. He said that he would get Chris and I the help we need and it wouldn't be from Spevak. I guess I'll hear back from him in the next day or two.

I have the meeting with Dr. Uma tomorrow at noon. I told Chris I was going to swipe her damn check in the crack of my rearend before I gave it to her. Of course I won't - but I like the thought of it. I don't even want to speak to her. I'm going to get by with saying the least amount possible to her. The person from the nursing company will also be there tomorrow. She will then follow me home to check out Kevin's room to make sure the nurse will have everything she needs there. Then we either get the nurse tomorrow night or the next. It will be a HUGE help. My only concern now is that they will give him morphine around the clock to keep him asleep. I don't want that. I want him to have it when he needs it - and no more. Ah well - I have enough to worry about right now. I'll let that go for one more day. I need to run - Gracie is calling and I need to get her to bed! You should hear her...Mommy! Come back upstairs!

I'm coming Gracie!

Monday, June 7, 2004 8:38 PM

Kevin didn't have a good day today. His breathing and SPO2 sats got bad over the weekend and it stayed bad. So bad that I was concerned and called his cardiologist at 5:30am this morning to leave a message for him. He called me back at 9:30am. It wasn't a good conversation. Dr. Spevak irritated me. He told me that they have done all they can do and Kevin was going to die. He told me that Kevin was going to die about 6 times during the conversation. The purpose of my call was to see if there was something that could be done for his breathing and maybe see if he knew what the cause could be. He didn't help me - he just upset me. I got frustrated with him and said, "I know he's going to die. My problem is that I don't know what to expect!" He mentioned cardiac arrest a few times in our conversation. I don't really know what that is. Is it painful? Does it last long? He said that we need to have a meeting to review Kevin's plan of care and let Chris and I know some of the possibilities of what could happen to Kevin. He kept dwelling on the fact that they have told us they can't help Kevin. He didn't really listen to me. I explained that if Kevin gets sick, and it's something that is easily fixable - we want him fixed. If it's something major - that's different. But my problem is not knowing what the symptoms are that Kevin is going to experience. Dr. Spevak said we could take him to his pediatrician and maybe get an x-ray and blood drawn. But he said there wasn't much good in that at this point. He said," What's the point of putting him through any tests that will make him uncomfortable? Even something as minor as an x-ray? We just want to keep him comfortable from this point on." He finally responded to me about his rapid breathing and said that "it wasn't good" and he didn't think it was something that would pass. He didn't offer any other assistance. He gave me the name of the person to arrange a meeting with - but I think I rather do something over the phone at this point. Chris and I are not going to leave Kevin and go that far from him for a meeting.

So, I called Hospice and asked for a nurse to come out today. They did. They made some phone calls and Kevin is now on Morphine. It eventually aided his breathing. He gets it in his mouth every 3 hours. He was due at 7pm, but his breathing wasn't that bad that he needed it. I don't think it's going to be a good night for us so Gracie is staying at Gan and Pop's house this evening.

I had called mom after I got off the phone with Dr. Spevak this morning. I was VERY upset. She came up to stay with me. We needed to make some phone calls that we had been putting off. Her first call was to the church. Father Valentine (Fr. Val) came out to meet Kevin early this afternoon. He was very sweet and comforting to talk to. He blessed Kevin and gave Mom and me communion. We told him about the support we have gotten from family and neighbors and he was amazed. We also told him our problem with Kevin's pediatrician refusing to give us that meeting for a nurse. He said that what she was doing was very arrogant and she should be reported. He is coming back tomorrow afternoon to bless Kevin with Holy Water. He said that Kevin wouldn't need his Last Rites because he is without sin. Things settled down so I got to take a short nap. But as soon as I got into bed - all I did was cry.

Mom also called Kevin's pediatrician this morning. She left a message stating that she was very upset with her about the situation and she wanted her to call her back and if she didn't hear back from her that she would be going to her office. The doctor didn't call back, but the nurse did. Dr. Uma will fit us in on Wednesday for a fee of $150 for her time. I am angry that I have to pay for this and she isn't compassionate enough to do this for free - but I'll do what I have to in order to get this nurse. Dr. Schwarz could do the meeting, but not until next week and it would be in Baltimore. I don't want to wait that long. But believe me - when this is all over with - she has lost us as her patients. I have already started looking for a new doctor for my kids. Our call was returned when hospice was here. They were pretty upset that she wasn't being helpful and then when they found out that she was charging us. I don't know anyone that we have talked to that agree with what she is doing. The hospice nurse also told me that she was in the meeting they had for Kevin before he was discharged from the hospital and they had told her that they believed his heart would fail before his liver. (I wasn't aware of that.)

Chris is taking off work tomorrow. We need to take Kevin in the early morning to get blood work done for his liver functions (and an additional test that Spevak requested). We are also going to the cemetery to purchase our burial plots. Mom will watch Kevin while we are gone. We also called the local funeral homes to check prices. There is a funeral home here in Rockville that is an historic old house. When I was little I always said that I wanted to live there because it was so pretty. They are also very expensive. But luckily, they have a policy that they only charge a certain percent of their regular fee for babies and children under the age of 2. That will be a big help. We still have to purchase the casket, pay for flower delivery to the cemetery and the prayer cards. I'm not sure when we are going to get that part out of the way - tomorrow with the burial plots is going to be hard enough.

I hadn't cried for Kevin is some time. He was doing so well. And as long as he was doing well, I didn't think about him dying. In the middle of the night I was holding Kevin and I looked down into his crib and started to cry. I was thinking about the time when he won't be there anymore. I'm not angry at God for this. I just don't understand why it's happening. I ask Him that when Kevin's time comes that he doesn't suffer and has no pain. And that Chris and I are there when it happens. We'll get through this. This is just so damn hard! I never expected that I would know the pain of losing a child. This is the most horrible thing I hope to ever go through. I need to stop now - my head is hurting from crying so much today....

Thank you all for your prayers! Our love to you all!

Thursday, June 3, 2004 9:32 PM

Things had been pretty uneventful here. Kevin gave us a little bit of a scare on Sunday morning. His sats were really low and he was breathing VERY fast. I turned up the oxygen, but it must made him breathe faster. So I gave him some Oxycodone (which is for pain), but one of it's side effects is to slow down breathing. He started to shape up about an hour later. He's been pretty OK since then. He still has some breathing episodes, but all around he's been doing OK.

You all should see his thighs! They are getting huge! We haven't weighed him again so I don't know how much he weighs now. I'll try to remember when I give him his bath tomorrow. But it's very difficult to give him a bath and it's very involved so I might forget.

I got out of the house today - ALONE!! I met some friends from work for lunch. I think I only looked at my watch about 8 times over an hour. And I didn't call home until I was in the car and ready to leave. Of course everything went fine. Gan and Aunt Alice watched him. They said it went so fine that they might let me out again!

After I got home - that's when the day got crappy for me....I called Mary Kay, who is the liver nurse at JHU, about getting his blood drawn next week. They have to fax the request to LabCorp for me. She told me that the blood that was taken from Kevin before he was discharged from the hospital which was to be used for the Alagilles testing was useless. That was 8 cc's which took alot of pain and 2 days to get from him. She said that CHOP had called her and told her that they needed the blood drawn again. I was angry - but I didn't take it out on her. She said she didn't know exactly what happened to the blood or what was wrong with it. It would be very difficult to get that amount of blood from Kevin again and it can't be done at LabCorp. I told her that I needed to talk to Chris and I wasn't sure if we were going to proceed with the testing at this point and we would just have to look into adoption if we wanted more children. She said that Gracie was healthy so we have the possibility of having healthy kids. But I told her there was no way we are ever going to take a chance like that. She asked if maybe CHOP could test Chris and I and not Kevin. I told her that I had already asked someone that and they told me they couldn't. But I told her that nobody ever asked CHOP that question. I asked her to call CHOP and find out for us. We'll just wait to see what happens. But for now - no more blood will be taken from Kevin unless it's to test his liver functions. (That will be done next week and every 3 weeks after.)

It gets worse...the woman from the Coordinating Center for the State Dept called me today. I was so close to getting a nurse for next week. All we had to do was have a meeting with Kevin's primary care physician, Dr. Uma, and then I would be approved and the nurse could start. Problem is, Dr. Uma won't have the meeting. She said she didn't have the time. 45 minutes. I was told that she wouldn't even call Ellen back at first. All of the communication went through the receptionist. When Ellen said that she was going to tell me to call another doctor to have the meeting with, then Dr. Uma called her back. Dr. Uma asked her what she meant by saying that she was going to tell me to get another physician. Which isn't what she said...poor communication. But that poor communication got Dr. Uma to call her at least. Ellen explained that it would only take 45 minutes in Dr. Uma's office. Dr. Uma said she would do it by phone or have the papers faxed to her, but she wouldn't have the meeting. She has too many appointments. So, since Dr. Uma refuses - I get no nurse. Ellen is going to try to get Dr. Schwarz to have the meeting. First of all, that would be in Baltimore and secondly, Dr. Schwarz is the Chief of her branch. When in the hell is she going to have 45 minutes open to have a meeting for us? Weeks? Months? I told Ellen that I was very hurt and disappointed with Dr. Uma. That was the last straw for me - I'm going to find a new doctor for Gracie and Kevin. Ellen told me to hold off on changing because if Dr. Schwarz can't help us, then we will have to beg Dr. Uma to do it. Ellen also told me that she was very surprised at Dr. Uma's response to her. Ellen told me that in all her years (and her colleagues years) that no doctor has EVER denied a meeting for this program. Now I'm going to get all pissed off and I won't be able to sleep tonight. Not that I get any sleep anyways.

I'm also looking into the Infants and Toddlers Program that the County pays for. A physical therapist will come by and see Kevin and do exercises with him. I'm not sure when that will start and how often it will be - but it will be a little change for him that I'm sure he'd love. Speaking of change - we took him out on the front porch this evening for about 30 minutes. He loved it. He had lots to look at and it wore him out. He's asleep in bed now. I have to get his meds ready for 10pm and I need to check on Gracie. Who, by the way, had to wear deoderant this morning. She was sitting on her potty and she saw me put it on. She wanted to smell it. So she did. Then she said she needed some. So I put the lid back on and acted like I was putting it under her arms and I put it away. She said, "Mommy....you need to take the lid off and do it." Oops. I told her she was getting too smart for me. Well, I better run. I'll let you know how everything pans out!

Saturday, May 29, 2004 1:43 PM

Well Friday was even more hectic than Thursday! But thankfully we didn't have any poopie indicents this time. We had so many people come by and they all came at the same doggon time! I hadn't gotten much sleep, and we all got up at 6am, so Aunt Alice was going to come over around 11am so I could take a nap. The woman from the Coordinating Center (contracted by the State Dept for the Model Waiver program) was supposed to be here between 10 and 11. Her name is Ellen. She called at 11am and she was in Olney and was lost. She eventually made it here at noon. Gracie was already up in bed. She was tired. After she ate her lunch she asked if she could take her "nappy" and I said she could. She went right up to her room and went to sleep! One of our old neighbors from when we lived in our last house stopped by the same time Ellen got here. SHe only stayed for a minute because she had groceries in the car. I asked her to stop by again sometime in the evening when the whole family would be home. So she left. I sat in the kitchen with Ellen to go over the Model Waiver stuff. While I was doing that, the RN from hospice came over with 2 student nurses. They went ahead and did what they needed to with Kevin. I kept doing what I needed to with Ellen. Before hospice left, I asked her about getting Kevin his 4 month shots (he's a little behind.) The hospital doctors suggested that he kept his immunizations up rather than not getting them at all. But Kevin's doctor wants hospice to get the shots from her and for them to give them to Kevin at home rather than me taking him out to her office. The hospice nurse said she would call about it. (Although that's the 3rd time I've asked them about doing it!) We'll see what happens. So, she finally left with her 2 students. Shortly after she left, the home medical guy came with our new regulators for Kevin's O2 tanks. He looked really familiar. I asked him if he had a brother that works at NIH. He does. It's his twin brother. We talked for a couple of minutes and then he left and I got back to Ellen. Ellen was here for 2 hours going over everything. The last thing she had to do was to see his room. We walked up quietly because Gracie was still napping. But when we got up there, I couldn't find her. I started to freak out! I looked all over for her! I started to think that she could have fallen and hit her head or strangled in the blind cords, etc. Then we heard her play piano make music in the living room. We both ran down the steps and saw her sitting at her piano. She had snuck down just 2 minutes before we went up! It took me a few minutes to get over my panic even though she was OK.

So, Ellen saw his room and just asked that I get a little lamp for his dresser for the nurse to see in case she wanted to read. Yes....we are getting our nighttime nurse!! It should only be another week or so! I'm gonna get some sleep!! (Eventually.) I have to learn to trust this person first so I will be up alot the first week or so they are here. She gave me a huge listing of all the nursing places that are available. I need to call them and tell them what my needs are and what shift I would like a nurse to see if they have people available. She recommended that I ask for 2-3 nurses so we won't always have different people when one gets sick. We will have a nurse hopefully from 10:30pm-6:30am, 7 days a week. They work 8 hour shifts, so I may not get those hours, but I should be able to get something close to it. Some other good news is that the State Dept will pay for items that our insurance company isn't covering! I already received the bill for the apnea monitor and food pump, which is $300 a month. I have to pay for it until next week, so that's 3 months worth since I'm just now paying for March. That stinks because we didn't start using the machines until the last week of April! We were told we didn't have to pay since he was in the hospital, but we were told since we actually had the items in our possession that we had to pay. Lucky us. And the State Dept will pay for his formula! I was getting it for about $25 a can off of E-bay. Now that they are paying for it, I have to get it from Johns Hopkins Pharmaquip. That's the place that charges $56 a can. But that's not my problem now.

Ellen will be setting up a meeting with Kevin's pediatrician next week and after that, we get the nurse. I'm excited and nervous at the same time. Ellen also suggested that I don't let them watch TV. Maybe after I get to know them and trust them, then I can let them watch a small TV. But nothing that would bother Kevin's sleep. They should be used to staying awake and reading or something since they are night shift nurses.

Oh, and I finally heard back about Kevin's next GI appt. They said that 6 weeks was OK, but his blood work should be done every 3 weeks. So he has to get more blood work done next week. Yuck. I don't know about another cardio appt. Dr. Spevak never responded to my e-mails. Another problem I'm having is that we were sent another feeding pump when Kevin was discharged, even though I told them we already had one. So had to have it picked up and returned. I've been getting bills from them for the last 2 months! I keep calling and they keep saying they'll fix it. I called again yesterday and asked that they get it removed from our account this time. Actually, they can remove our account totally because we don't use that company.

I was also told that only 200 people can be on the Model Waiver program at one time. That is in the whole state of Maryland. So we are pretty lucky that we finally got on it.

Kevin needs more food so I have to run! More to come later!

Thursday, May 27, 2004 9:29 PM

Finally! Well - things are just CRAZY around here! Gracie has been home with me since Tuesday because her cousins at her daycare have colds. We can't afford for Gracie to get sick and bring it home to Kevin. It could kill him. So, she's here. I keep telling her that I'm going to sell her on e-bay - but she tells me that I won't. After today - maybe I will! The day started out that Kevin poopied out of his diaper into his bed at 6am. It was a huge mess. I got him downstairs and cleaned up and just as I was finishing, Gracie came down. That was at 6:30am. (She got up a little too early today.) We do OK during the day but I have a hard time at lunchtime and dinnertime because I can't watch Gracie and Kevin at the same time with one in the living room and one in the kitchen eating. Luckily I've had some help and it's made it alot easier. Kevin originally woke up at 4am this morning and had me up about every 5 minutes after that so I was pretty tired today. So, Aunt Alice came over and I tried to get Gracie to take a nap with me after 1pm. She had gotten in trouble earlier for yelling at me so I sent her to her room. Where she proceeded to fall asleep for about 15 minutes until I woke her up. So, she wasn't ready for a nap at 1pm when I was. But I tried. She was poking me in the eyes, putting her fingers in my nose, tickling me under my arms, etc. Finally I left the room and got into my own bed. She followed. It just went downhill from there. I didn't have much time to sleep because the hospice people were coming out (they were VERY late). So I just said screw it and got up. Oh wait! I missed something in there. I had sent Gracie up at 1pm and I was following shortly - but before I got up there she told me that her hand was dirty. So I went up and asked her if she had gotten into some chocolate. Nope. She said, "No, it's poopie!" Oh, lucky me. I got both of my children's crap on me in one day! There was one piece in the hallway (on my cream carpet) and one in the bathroom. I picked them up in some tissue and went to drop it in the toilet. Of course - I MISSED! The piece that I dropped was made of a bunch of little poopies so when I dropped it they went in all different directions onto the bathroom floor. (Ah, what a fairytale life I lead!) Are any of you jealous of my day yet?

Then hospice finally showed up. I was planning on changing his tube myself (which I did), but when she walked in, she told me that she wasn't allowed to change the tube, but she could help me. I guess it's for legality reasons. I dunno. It went well and I got it down quickly. She was a big help. He is hard to hold down. When he was all finished his sats were at 70. They weren't as low as I thought they would be. He was at 75 a little bit ago so he's gotten better. I also asked hospice to get another regulator for me that goes higher than 1 liter. It seems that he needs more these days. It worries Chris and I. But I don't want to get there right now.

I've got to get going. Kevin still isn't in bed and I've got to get his next medications ready. I'm sorry I can't write more often - but I'm sure everyone understands. Be sure to see the new pics! I have a new role of film I need to get developed so hopefully we'll get new ones up again soon!

Thursday, May 27, 2004 7:25 AM

I will update sometime today. Things have been really HECTIC!! In case you haven't noticed, the picture page has been updated! There are also some new pictures on the extra link that is located towards the bottom of his main page.

Sunday, May 23, 2004 7:20 PM

I don't have much time to write this evening, but I have a bunch to say. So I'll probably be skipping all over the place - bear with me.

Kevin's blood draw results were pretty good. I was told that Dr. Schwarz was actually impressed with the results. Unfortunately, the ammonia test wasn't done. They said that there were lipids or fat in the blood sample so it couldn't be done. I'm not sure when they will ask for it to be run again. That is an important test for him. His bili count is 21, which is down from 21.6. That's not much - but it's better than staying the same or going up! Speaking of going up; Chris and I weighed him today before his bath and he is 10 pounds 12 ounces! We're almost at 11 pounds! Kevin had some icky days the past week. He just wasn't himself. I think he's starting to feel a little better though. He didn't even smile for 3 days.

Kevin pooped on my at 6am this morning. It escaped through the leg of his diaper and went down my chest and stomach until it landed on my bare feet and the carpet. I had jammies on - but that didn't help me much. It was pretty gross. I had to call Chris out of bed to help me get him all situated and back to bed.

I was taking a nap with Gracie yesterday when we had a visitor. She is a woman from the neighborhood that knows my mom. She was here an hour and I didn't even know it - I was pretty tired. She made quilts for Gracie and Kevin. ABSOLUTELY GORGEOUS! She even dyed some of the material herself for Kevin's quilt. I'm going to take pictures of them and put them on the web. I know, we are still trying to get the other photos on. My sister's computer is down and she's working on that. Gracie's quilt is all embroidered. I don't even want Gracie to touch it! I'm going to have mom put a sleeve on the back so we can hang it. Kevin's quilt is blues whites with some bright material spread thoughout it. They are very special.

Kevin doesn't like to lay down much when he is awake. He wants to be held sitting up and facing outwards so he can see what's going on. He is doing really well with his head control. He's kicking his legs alot too and getting better at grabbing for toys. I think it's frustrating for him because he is 6 months old and in most ways he thinks like a 6 month old - but he can't do what a 6 month old can physically. He really wants to - I can tell. He's just stuck in a 2 month old size body. But he's getting stronger each day. We pulled out the excersaucer today. He sat in it for a little bit. We piled up blankets around him to help hold him up. He was putting pressure on his legs and learning how to stand a little bit.

Uh oh - Gracie's home! She's been swimming at a pool party our neighbor took her to. (I sure hope it makes her sleep well tonight!!) Gotta run!!

Thursday, May 20, 2004 1:24 PM

Kevin's blood draw on Tuesday went OK. Mom went with me so I had her stay with him in the hallway until we were called. It took 30 minutes. I told them that I had called about him and I told them about his problems. They were trying to get our paperwork done - they were just idiots. I told mom that I couldn't understand why the process for someone to get their papers done and blood drawn could take so long. I watched them - they didn't do very much paperwork. They just weren't very efficient. I will call later today to get the results from JHU. They should have received them by now. I also had to make an appt for Kevin for 1 month for GI. That was a nightmare. 20 minutes on the phone to get nowhere. I got disconnected several times (they are really good at that) and then I eventually had to leave a message. When they called me back I couldn't get an appt for 1 month - she gave me 6 weeks. She said Dr. Schwarz wasn't even in the clinic in 1 month and if I didn't take this 6 week appt I would have to wait until July. I took the appt and said that maybe someone else in the clinic could see Kevin before then. I said that I wasn't sure if he could go that long without being seen by someone. She said she would transfer me to Dr. Schwarz's voicemail - then disconnected me. I'm going to send an e-mail to the GI nurse to see if we need to see someone else or can wait 6 weeks. Maybe he would just need his blood drawn in 1 month. We can do that without going to JHU.

Not much else is going on here. Gracie likes to play with the cicatas outside. I think there are about 2 million in our backyard alone. I feel bad for the ones that are stuck on their backs - so I flip them back over. Then Gracie comes and steps on them. I've told her not to step on them. She doesn't do it anymore. She says, "Don't step on them. God made them." That's right kiddo! (Plus the fact that mommy doesn't want to clean them off of your shoes!) But who knows - she probably steps on them when she is outside with her dad and they just don't tell me about it.

Hospice came by today. Kevin's sats are a little low so I had to bump up his O2. He's also pretty fussy today. He doesn't want to be laid down. That means he wants to be held all day - which I can't do. I didn't get too much sleep last night, but I got to take a short nap this morning. Kevin and I came downstairs a little after 6am. Not too bad - and it's better than 4am! We've been there before. He's supposed to have a few visitors tonight so maybe he'll stay awake for them and sleep good tonight. I pray that he does....

Monday, May 17, 2004 1:28 AM

Kevin is starting to sleep alot better at night. He didn't get me up last night until after 2am. I did notice that the price of Coca-Cola stock has risen $10 per share since Kevin has been home. That's because I drink it all day to stay awake! Thank goodness that I'm a share holder!! I'm supporting my stock! But really, he's getting much better. We have to thank his Pop for finding the replacement bulb for his nighttime music toy. It burnt out and Kevin didn't have anything to look at to get to sleep. His poor Pop had to travel all over the city trying to find the right bulb. But that night, Kevin watched it as he went to sleep. And then again at 1am. And again at 5am. He just loves it.

I need to make an appointment for him to see Dr. Schwarz again in 1 month - but that's no easy task. I've spent over 15 minutes on the phone getting nowhere. It's just an appointment!! After getting disconnected twice - I had to leave a message with someone. Gee, I wonder if that call will get returned. I also had to send an e-mail to Kevin's cardiologist this morning. He never requested another appointment for Kevin and if Kevin keeps gaining weight - his medication doses for his heart will need to be increased. I told him that I can e-mail him every week or two and let him know Kevin's weight and he can let me know if the doses need to be increased or he can let me know if I need to make an appt. He should get back to me today. He's pretty good about responding. I also had to call LabCorp about getting Kevin's blood drawn this week. They tried twice at JHU last Friday. After those 2 sticks and they weren't getting anywhere - I told them they were done and I wasn't going to let them stick him again. So, we have to go to the icky place designated by our insurance company. I called them to ask if they had a pediatric person there and they do. I also said that Kevin was immunosupressed and he couldn't be hanging out in the waiting area waiting for his turn and asked if I could make an appt. They said I couldn't make an appt, but they would "probably" just take him right back to get him taken care of. Probably? After I get in there tomorrow it will be more like "definitely". As you can probably figure out - I'm a little agitated with the medical systems. I'm tired of their crappy attitudes and bad social skills. I'm just not taking it anymore. I can be a real pain to people when it comes to Kevin. But I really don't care anymore. I need to do whatever I have to to get him taken care of in the way that he needs to be.

Kevin is doing really well. He's very alert and very strong. He likes to grab things with his hands and try to get them to his mouth. And he smiles and talks up a storm! The nurse came by today and was impressed with him. (Even though he was asleep the entire time she was here.) I told her about the problem I'm having getting him around to his appts because of the oxygen tanks. She said that I was supposed to have smaller tanks that were more portable and lasted a couple of hours. I didn't know they came that small. She made a phone call and hopefully I will have them in a day or two. That should make it much easier for us.

I have some chores to get done, so I better get going. I'll write again in a day or so. Hopefully the new pictures will be up soon! I'll let you know when they are.

Friday, May 14, 2004 8:08 PM

I need to make this pretty quick because Gracie is nipping at my heels. Kevin's appointment today went fine. (Except for the terribly nasty witch at the front desk.) We were told our appointment was for 11am - but they said it was for 12:45! At 12:45, the person sitting across from us told us that they had the next appointment, but they would go to lunch and let us take their spot. She said that she had overheard us talking and she was very sorry about our situation and wished us the best. I got a little mushy. I have a hard time when other people feel bad for us. I don't know why. A man walked up to us while we were waiting with his baby in the stroller. He said, "Hey, we aren't the only ones with all the equipment hooked up to us." His baby had the feeding tube and was also hooked up to oxygen. He was 9 pounds and 10 months old. The man said his twin ate all of the food while he was in the womb. His baby wasn't yellow - but he looked pretty sick.

Guess how much Kevin weighs......10 pounds, 8 ounces! What a whale! And that was totally naked! We are going to push him up by 1 cc per hour every 2 days until he reaches 30 cc's. We also ran into Dr. Lau quickly. I had to run because of the witch at the front desk. He said that Kevin looked good. So did everyone else. (Gracie is really nagging me...)

I have been getting some more sleep. Kevin still gets up - but not nearly as much as before. Maybe 6-7 times. He stayed asleep long enough for me to have a dream last night....Leonard Nimoy (Mr. Spock) was naked in my dream....so I guess that makes it a nightmare. And I've NEVER seen an episode of Star Trek - and now I never will!

Gotta go - time to put Gracie up for auction on E-bay!

Wednesday, May 12, 2004 3:21 PM

HE SLEPT ALL NIGHT!! But I didn't! I kept waking up wondering why he was sleeping and I had to keep checking on him! He has a breathing and heart monitor that he is hooked up to in case something went wrong - but I kept checking anyways. I would be able to control myself tonight and leave him alone...but he probably won't sleep all night. That's just the way things work out here. I sent the new pictures to my sister to post on the web so hopefully they will be up soon. Remember - there are additional photo pages available of Kevin. The link is towards the bottom of his main page where it says "LINKS".

Kevin is doing really well. He has only spit up once today. He watched Sesame Street a little bit today and watched his Pop put together a piece of furniture for Gracie's room. He goes to the doctor on Friday - I'm very curious to see how much he weighs. His thighs seem a little chunkier. And I think his extra chin is getting a little thicker too. I e-mailed his cardiologist last night about his SPO2 sats. We have to keep Kevin running at a full liter of oxygen to keep his sats at 73-75 percent. That is very low. He should be 75-85 without oxygen. I asked the doctor if I should leave him at that percentage or get a regulator for the oxygen tanks that can give more flow (over 1 liter). He responded at 10:30pm and said that 73-75 was OK. But since he is in a downward trend, to keep and eye on it and let him know if they get lower. He also wanted me to keep the GI doctor in the loop. I'll let her know on Friday. I told Chris what the doctor said and he is scared. He's got every right to be. We were told that Kevin's sats would just get lower and lower with this heart defect and he would pass in his sleep from it. But Chris and I honestly think that he would pass from his liver disease, not heart disease. We also think that Kevin has several more months ahead of him - at least 4. That's what we are wishing for. But with his sats getting lower - it's really scary. As long and Kevin has good days, I don't think about losing him. It doesn't even cross my mind.

I've got some things to get done before I have to pick up the Princess! Plus I don't want to depress myself!

Our love to all!!

Tuesday, May 11, 2004 12:37 PM

Kevin is still doing well. But he still has some bad sleeping habits. He kept mommy up most of the night last night. I keep switching him from the crib to his bouncy seat when he gets restless. And when both of those don't work, we come downstairs. I was surprised at how perky I was at 3:30 this morning. There really isn't much on TV at that hour. I caught a nap for 15 minutes at 11am, then I woke up because the hospice nurse and the chaplain lady were here to see us. The nurse was very happy that Kevin got to stay out of the hospital this time. So are we. Aunt Alice is here now so I'm going to see if I can get another hour of sleep. My problem is that I can't get too much at this time in the afternoon because then I won't be able to sleep tonight. That happened to me on Mother's Day. I took a nap with Gracie. Kevin slept for a couple hours at first that night - but I was awake. So when I finally got tired - he woke up. He will stop crying if you pick him up - but I can't hold him all night. I usually just have to comfort him and snuggle him for a minute and then put him back down. He only got sick twice yesterday. Once that was a teeny, tiny bit and the other was after he tried to shove his entire hand down his throat. That was a biggie. He's grounded...again. That's why I put socks on his hands at night now. As soon as that pacifier falls out of his mouth - it takes 1 second for the hand to go in. And then he gags.

Mother's Day was nice. I didn't cook or do dishes. (My poor mother did. And Dad too.) We had a cook out at Gan and Pop's house. It's nice having "events" there like Christmas and Easter, etc. We never have far to go to get back home. Just a 30 foot walk through our backyard. Gracie made me a pillow. She decorated it herself. With black marker. All black. Just black. She says that purple is her favorite color. But when it comes to crayons and markers to draw a picture - she always needs to have it black or brown. It is cute and I appreciate Nina helping her make that.

Kevin has his liver appt on Friday at 11am. He will have more blood taken too. I hope his ammonia level comes down. I'll be sure to let everyone know how it goes.

I better get so I can catch a quick nap!

I'll be sending some pictures to my sister tonight for posting on the site. But she is sick so I don't know when they will get put up. A couple days or so maybe....

Saturday, May 8, 2004 12:47 PM

Today is Saturday and I have to go back to Thursday. I need to start keeping notes of things I want to tell you so I don't miss anything. This might bounce around a little bit - but I'm going to write them down as I remember.

Thursday he went to see Dr. Uma, his pediatrician. Mom went with me. It was very hard since Kevin is still on oxygen. He threw up almost the entire way there and the oxygen fell over in the van. We'll have to figure something out to fix the traveling oxygen problem. I guess a cord or something. Anyways, the receptionist practically came flying from around the counter to come see him. She said she wanted to hold him but she was dirty from filing. But asked if she could touch him. She said, "My hands aren't clean, but can I touch him?" I said, "No! Go wash 'em!" So she ran off quickly and came back to touch him. We went back to our room to wait for the doctor and the receptionist gave mom (Gan) a hug (because she needed it.) Dr. Uma gave us some referral forms so we wouldn't have to call to get one each time Kevin needed to go to his clinic visits. Kevin also needs his shots next week. He is behind in getting them. She said she would fill the doses and let Hospice pick them up so he can get the shots at home and not have to come out again. That was a good idea. Kevin got weighed and measured. 9 pounds 15 ounces and his length was 23 1/2 inches long. I don't get it. A cup is a cup. A teaspoon is a teaspoon. Why isn't a pound a pound? His weights are so scattered from doctor's office to office. But as long as he still feels heavy and looks good - I won't worry about it. He will need a tubby today so I will weigh him here at home to see what that says.

I think it was Thursday night when I received a call from some Liver place. I thought it was a legitimate call that I needed to take. They wanted money. The woman told me, "You probably aren't aware that liver disease causes many deaths each year and..." STOP! I said that I was aware and I had a terminal son with the disease right now. She said, "Then you've probably heard about us." Nope. Then she proceeded to ask for money. Why didn't she offer to help me out? I said, "My son has been in the hospital for the last 6 months and I have medical bills. I also have a funeral to pay for. I don't have any money to give to you." I was a bit perturbed.

I think it was Thursday night when I got a total of 2 hours sleep. Kevin was really cranky and wouldn't lay still too long. He kept losing his pacifier. About midnight I brought him down to the living room. I had more options in the living room. (He didn't like any of them.) He wanted to be held. Gracie came down after 3am. So, Kevin slept on one side of the couch and Gracie took the other 2/3. I stayed in between them, scooted to the edge so I wouldn't sit on her feet. Kevin would lay in his boppy pillow for 5 minutes or less and then cry. He would sleep when I held him on my shoulder, but he would get restless there too. So - we went back and forth all night. Aunt Alice and mom came over early so I could catch a nap. His Aunt Linda came over too. It ended up that Kevin got a fever. It kept creeping up. It got to 101.8 and I called Hospice. I wasn't sure which medication to give him (Ibuprofin or Tylenol) since neither are really good for his liver. I thought maybe Hospice would know. They paged Naseem who had Kevin the last few weeks at JHU. She responded and said that she was no longer on that rotation and to call the GI doctor on call. Why in the hell couldn't she have just told us which one to give? I thought that was asinine. It could have saved us alot of time. Hospice was a little upset that she wouldn't help also. So, I tried to call Dr. Schwarz. While I was waiting for her to NOT call me back, I tried to get the doctor on call. The first time the paging service patched me through to the phone tree of Dr. Schwarz's office. The second time they told me the doctor on call doesn't start until 5pm. (Well who in the hell is there now?) She rattled off names to me and when she got to one that I knew, I told her to page him. She took my name, phone number and problem and said to wait while she got the doctor on the phone. I waited almost 5 minutes and then she disconnected me. I assumed (which was the wrong thing to do) that since they had my info that they would call me back. Of course they didn't. In the meantine, the Hospice people were also trying to find someone to help us. Kevin's nurse called me and asked for the Patient Advocate's phone number. She also got Dr. Schwarz's. Chris told me to call the 6th floor unit that Kevin used to be on and ask them to page GI for me. That was a good idea. But I waited to see if the nurse got anywhere with this. She called me back and told me to give Ibuprofin and how much to give. Dr. Schwarz had told her that we could go to a local hospital or bring him back to JHU because they thought he may have Cholangitis again. But Kevin didn't seem like he was in any pain this time. So, we gave him the medication and kept a close eye on him. He had a cold clothe on his head and a cold one in his diaper. I thought we were going to have to go back to JHU, but it wouldn't be until later in the evening. The traffic is so bad at that time that it would have taken us over 2 hours to get there anyways. But his fever came down slowly. I gave him another dose at 8pm and the fever is totally gone. The nurse called at 10:15 that night to check on him. She said that he could have gotten the fever from being out at the doctor's office. She said it could have been from anything because his little body reacts differently since he's sick. So, I keep checking him and it hasn't come back. We'll keep watching to see how he does. He also hadn't peed when he had the fever so I was injecting water into his NG tube. I was so happy to see a dirty diaper when it happened that night. He was feeling wonderful and smiling at 9pm. He stayed awake for an hour watching Baby Bach. Gan and Pop kept Gracie for us last night so I really thought I was going to get some rest! (Yeah, right.) When we put him in the crib he kept gagging on his long fingers. So, I stuck socks on his hands. It irritated him for a few seconds, but he got used to it. He slept until almost 1am. So I got a little sleep. Then I eventually brought his bouncy seat upstairs. I kept switching him from the crib to his bouncy seat. I brought him downstairs a little after 5am this morning. I didn't get anymore sleep after doing that. But at least I had a comfortable place to sit instead of running back and forth to his room. I called next door a little after 8am to get some help. And I went upstairs and slept for 2 hours. I could have used 20. Kevin is still doing well. But he is still on oxygen. We'll keep checking is SPO2 sats and maybe he can come off eventually. But I'm not too worried about that anymore. It's all part of what's going on.

I just remembered I skipped something. (I don't feel like looking back to see where it should go in this entry so I'll do it here!) Kevin is on Aspirin for his heart. 1/2 each day. The ones that I received from Hospice weren't scored in the middle so I had a hard time getting them to split evenly. I told the nurse and she got some delivered for me that were already cut. I couldn't belive it when I opened them up to see that they weren't all cut in "half" PLUS they had a safety coating on them. Some were aspirin chips. Some were 3/4, etc. So I thought I would remove the ones that looked close to being 1/2. Then I wondered if I would even be able to crush it with that coating. The aspirin cruched, but the safety coating had problems. I called the hospice guy and told him. He was annoyed with the pharmacy. He said that first of all, if the medication isn't scored, it isn't an even dose throughout the medication. If it was scored, there would be 40 mgs in each half. If it wasn't scored (which this wasn't), the medication is uneven throughout the pill and 1/2 could have either too much or too little meds in it. Good to know. I told him that if I was some idiot I would have tried to get that into his NG tube and it would have clogged. Not everyone is used to doing this and the pharmacy needs to be more careful. He agreed. So, I eventually got new aspirin. Cut in halves....

I better get so I can check on our little man. I guess he's fine because I haven't heard a peep. Oh, that reminds me of one more thing! I had to go get Gracie from the sitters last week. Patty came over from next door to see Kevin and give us a picture of him. I asked her if she had a few minutes if she could stay with him while I got Gracie. She said she would so I left. When I was going down the road, Chris came along. I stopped and told him that I was going to get Gracie. I also told him that Kevin was asleep and I wasn't going to be long so I just left him on the couch and that I figured he would be OK alone. I was amazed that Chris didn't freak out. He gave me a look, but said, "OK". He told me he had someplace to go when I returned. I told him to go ahead and go since he was asleep....and since Patty was in there watching him. He said, "OH, OK!" It was hysterical. But maybe you had to be there to get the full effect.

OK - I think that's it. I'll write again probably sometime Monday.

And a couple more things....I want to thank Tim, Patty, Eliza and Lillian for my mother's day flowers. They are beautiful. And my cousin Annie for a special mother's day card I received from the Ronald McDonald house from a donation she made in Kevin's name. It was a wonderful thing to do. And for Aunt Alice and Patty for helping so much with Kevin and feeding us just about every day! And Gan and Pop for helping with EVERYTHING and ANYTHING we need each day. We don't know where we would be without you all!

Our love to everyone!

Thursday, May 6, 2004 8:58 AM

Kevin was put back on his oxygen Tuesday evening. He is still on it. His color is good and he seems to be feeling better today. He didn't seem to be himself yesterday. His Gan and Aunt Alice watched him for me yesterday. I had to go for a doctor's appt. The OB/GYN knew that Kevin had a heart defect from when I went in to get the staples removed after the C-section, but she didn't know what else had happened and what his last diagnosis was. It was very difficult to tell her. Of course I cried. I have a hard time telling people about Kevin when they have no idea. The people in her office were asking me how he was. There were pregnant ladies in the waiting area that would have been able to hear me so I just told them that he was doing well and had been home for a week now. I'm sure the doctor will fill her staff in later. I didn't want to scare any moms-to-be. The doctor is very sweet. She cried - alot. Head in her hands crying. That just made it worse for me. I don't like to see people cry. But unfortunately - we've got a lot of crying left to do. She asked about the Alagilles and the gene testing. She told me that if they found the gene and it is from me, the Shady Grove Infertility clinic could harvest a bunch of my eggs and select an egg that doesn't have the gene in it. Can you believe that? If it's from Chris, I don't think they can do anything about the sperm. It sounds pretty expensive. Chris and I need to see which is cheaper; help from an infertility clinic or adoption. We can't go broke trying to have more children - we wouldn't be able to feed them after we got them!

I tried to take Kevin off that medication that closes his stomach muscle that kept him from burping....he's back on that. It didn't work - he could burp a bit, but he threw up ALOT more. He's back to where he was; gaggy, spitting up and not burping. But it's not as bad as if he were to be off the medication. He has an appt today with his pediatrician. She hasn't met him yet. My mom told me yesterday that the office receptionist called to confirm his appt. She said that she had been waiting for him to come in and wanted to know if she could hold him. She said, "I'll make sure I wash my hands first." And she wanted to know if Gracie was coming in. This lady just loves Grace. Gracie...she loves Kevin to pieces. She loves to give him kisses and hugs. She wanted to help me take him upstairs to bed last night so she held his leg while we went up the steps. We're lucky we didn't all fall and crack our heads open. But you can't tell her NO. Although she says that word quite often these days. I have to bribe her with purple Peeps most mornings to get her ready for the sitter (Nina). I had run out of Peeps, but Nina got some after Easter for me. I have 2 boxes left. I don't know what I'm going to do when I run out of Peeps! I know I shouldn't give her things to make her cooperate. But hey, I gotta do what I gotta do. It's pretty hectic first thing in the morning.

Well, I need to get Kevin ready for his appointment and load up the car.

Take care everyone!

Tuesday, May 4, 2004 7:40 PM

Kevin spent the majority of his day at the clinic of JHU. He was still on a little bit of oxygen this morning when we left to get there. When we arrived, they hooked him up to the SPO2 monitor and he was above 80. So we turned his oxygen off and I asked that he stay hooked up so we could see how he did with no oxygen at all. He stayed around 79-80. So, we've kept him off, but we check every once and awhile to make sure it's still OK. The cardio appt went OK. He is staying on the same medications at the same doses. His heart and lungs sound OK too. Dr. Spevack also told us that if Kevin grew (which is something we originally wanted) that he could outgrow his shunt and his SPO2 levels would drop and that wouldn't be good. Damned one way and we're damned another. We told the doctor about him turning green and he thinks that maybe Kevin asperated (formula got into his lungs when he spit up). If that happens, Kevin could develop pneumonia. Dr. Spevack sent an e-mail to the liver doctor and said that maybe we should look into getting an ND tube put it. I told him, "Been there, done that. That's not happening - it doesn't work for Kevin." He told me that he had already sent the e-mail so I could tell her that myself when she called. (I'll get back to that, because I just got off the phone with her.) We also needed to get an x-ray and some blood work done today. Our insurance company would not approve either to be done at JHU. They said we had to go to the places designated for those procedures. Dr. Spevack said that the x-ray needed to be done as STAT because he may have asperated and the insurance said that would be OK - but no blood work. I was told last Friday that the hospice place said they would take care of his blood being taken there at JHU. But I didn't have their number to call and find out. Of course they weren't in the phone book and 411 gave me the wrong number twice. The receptionist at the cardio office called the insurance company to try to get approval for the blood work (we had already been turned down for it 30 minutes earlier.) They told her that they had rules. She argued and said that some rules need to have exceptions and that Kevin was very fragile and shouldn't be hauled around town all day. They wouldn't approve us. So, while Kevin and I were getting the x-ray's done, Chris got the hospice # from my mom and he called them. Hospice said they would pay for it and to go ahead and get his blood drawn there today. We will just send them the bill when we get it. His blood draw went perfect - he didn't even make a sound. We got home after 2pm, and our original appt was at 9:20am. It was a long day. I think Chris and I worked well together today. It was stressful - but we handled it fine.

The GI doctor, Dr. Schwarz, just called and asked what the problem was that we were having (because I had left her a message on Sunday and Dr. Spevack sent her that note today for her to call us.) I told her that Kevin was gagging alot and I thought he had alot of air stuck inside him and he couldn't burp. She said that one of his medications constricts the sphincter above his stomach to keep him from spitting up - so air probably couldn't come back up either. He is on that 4 times a day. I will cut out one dose and see how he does. If he throws up more, I will add it back in. If he doesn't and he tolerates it, I have to remove another dose in a day or so. She also went over his blood work with me. They already had his results to her. His ammonia level is pretty high. So one of his medication doses was increased to see if that helps. There is one other medication for high ammonia, but that gives diarrhea and he just doesn't need that to happen to him. Hopefully the increased meds will work. His bili is at 21.6, which is really high, but down from the 24 it was at a couple of weeks ago. As for the rest of the blood results, she said he looked pretty good for someone in his condition. I was happy to hear that. We will keep our appt for 5/14 and get more blood drawn then. Hopefully everything will be fine. Dr. Spevack didn't make a follow up appt with us. He said he would wait to see how it goes with GI first. I don't know what he meant by that.

Well, I need to get Princess Gracie into the tubby. Aunt Alice is on baby duty again this evening. They also provided dinner for us (again). I must admit - I like being spoiled like this! I better run!

Lots of love to you all!

Monday, May 3, 2004 12:47 PM

Sorry to keep everyone waiting! I guess writing each day isn't as easy as I thought! Kevin is still here at home. He was doing pretty well his first few days, but last night, about 5pm, he turned green. Why green? Yellow and blue make green. So if Kevin's skin wasn't yellow - we would have seen him turning blue. We checked his sats and they were pretty low. We had to put him on oxygen at 1 full liter (the highest it goes) for a few hours before his sats even got into the low range of where he needs to be. He had a little bit of a rough night - he was on oxygen at 3/4 liter all night. The canula kept coming out of his nose so we had some issues. I finally got it taped on. I was using other tape - but it wouldn't work. The tape I ended up using has stuck to the NG tube dressing so that is going to be tough to remove. I will have the hospice nurse help me - but I'm not sure when he will be able to come off the oxygen. I had him weaned down to 1/16 liter this morning - but he got irritated and he is now back to a full liter again. His Aunt Alice from next door is upstairs holding him for a little while. That gives me some time to get you all filled in a little bit and maybe I can rest my eyes for 30 minutes or so.

Some staff from hospice came by on Thursday and Friday. Thursday was the social worker. She didn't talk much - I did most of the talking. She told me, "I don't think you need me. You seem to have everything under control. You've actually inspired me today, seeing how well you are handling this." I told her to get back to me in a couple of months and let's see how I'm handling it then. I'm not so sure it will be as well as now. But I don't really have a choice I guess. I wouldn't be able to get anything accomplished if I was a blubbering fool. (Although I do blubber sometimes. I already did this morning.) Then on Friday it was the nurse and the chaplain service person. They were both nice - I had never met them before. I knew they were coming - the chaplain lady called the day before and asked if she could come. I remember telling my mom that I didn't want to talk to this woman about death and dying. I wasn't up for it and I especially didn't want to do it with a stranger. But she really didn't talk too much about it. Just towards the end of her stay. It was SO hard for me. Lots of tears. I hate thinking about when he won't be here anymore. She asked if we knew where we wanted him buried, what funeral home I wanted to use, etc. She told me that it's best to get things arranged beforehand. That way we aren't running around trying to get it done and we would have that time to grieve. She also told me that if we get everything arranged prior, they would make all of the calls (to the funeral home and cemetary) to let them know when Kevin has passed so Chris and I don't have to do it. Before she left, she said a prayer for Kevin and sang him "Jesus Loves Me". He liked watching her. I don't want to talk about that part anymore...

I called the Cardiologist and GI doc this morning since Kevin had his problem last night. We have a cardio check up tomorrow. But I figured I would give him a heads-up just in case he needed to arrange for Kevin to have some tests done while we are there because of this. He hasn't returned my call yet. We also have a check up with GI on the 14th. I explained in my message to the GI doctor that he was spitting up more than usual and asked if she had any advice or could see us before the 14th. She hasn't returned my call yet either. They will probably call after Gracie gets home and Kevin is crying and the birds are screaming. (Chris wants to kill our pet birds - they make too much noise. But I think Kevin is getting used to them.) And they will probably call at the same darn time! That's the way things have been going around here lately. But we have had a lot of help from our neighbors. Lots. Like upstairs right now.

Chris is nervous having Kevin at home when he gets sick like this. I don't think that we are doing anything different than what the hospital would do. It's wearing on us a little bit. Chris and I are going to have a talk about it. Because Chris wants Kevin to go back to the hospital. That would be easiest - but I don't think that's best for Kevin. We knew this wasn't going to be easy. And boy it isn't! But Kevin is comfortable here and he gets attention from us 24-7. But if Chris isn't comfortable with it - Kevin will have to go back. I can't do this on my own. Of course Chris wouldn't make me do it alone - but the stress between us isn't worth it. I pray that Chris will become more comfortable with our situation. We brought him home to live the rest of his life here and to die here at home. We didn't want that to happen in a hospital. I still don't. Hopefully we can work things out. We are trying to get approved for that waiver program which would get us a nurse to help in the evenings. That would take a HUGE load off of both of us. But that will take a few months to process. Maybe God will smile down on us and the process will go a little faster for us. Well - I need to check on Aunt Alice and Kevin. He must be awake because I can hear her talking to him.

Our love to everyone! I'll let you know what happens with his appointments!

Thursday, April 29, 2004 10:27 AM

I have a teeny break so I figure I would write as much as I could. Kevin is taking a short nap on the couch. Chris went back to work today so it's just the 2 of us today. So far, so good. I didn't sleep in Kevin's room last night, I stayed with Gracie and kept the monitor with me. Kevin slept until 2am when he let out a HUGE scream....HUGE! It was so loud that it woke up Chris - and that doesn't usually happen. I ran into his room (after almost falling out of bed) and I gave him his pacifier - that was it. He wanted his pacifier. Chris came running in and said, "Is that all he wanted?" Apparently it was, because he went right back to sleep. Then he slept until 5:30, when he needed it again. (But this time he asked for it in a more queit fashion than 2am.) Then we got up about 6:15am and came downstairs. He gets 8 medications at 7am so I start them a little sooner than 7am so I can space them out. Then he fell back to sleep! I got the birds cages cleaned and then Princess Gracie came down. I thought she would be cranky like she has been the past few mornings, but she was fine. This morning went alot smoother than I thought it would.

I had to call the pharmacist today. One of the medications they gave me is not the same color as the same medication that I had filled by Hopkins. I purchased 1 weeks worth of meds for Kevin the last time he was discharged. This medication is a foggy, clear color. It was getting confusing with all the different meds we had so I threw away all of the Hopkins meds since there wasn't much left to them. So I got his dose ready last night for this medication and it was so dark purple that it was almost black. It freaked me out. I never saw that before and I wasn't about to give that medication to my child. I wasn't sure if it was correct. I called the hospice people - that didn't work (surprise, surprise). So I called Naseem, the doctor from JHU. She called the pharmacy at JHU and they told her they had never heard of it being that color. So I dug the other stuff out of the trash and used that. I called the pharmacist today and he told me that he put a grape/watermelon flavor in it. (It didn't smell like grape/watermelon.) That was a relief. He told me that he had another medication being delivered to me today and he would re-make this one without the flavoring. I had told him that Kevin was getting it through his tube so we didn't need flavor - plus I don't want to try to get that out of his clothes if I spill it. He was very nice and helpful. Also, the hospice nurse came by yesterday (Wally). We went over how Kevin was doing and before he left I told him about my experience with them on Easter. I told him I wouldn't call them again until I feel that they know Kevin better. I told him that the advice the person gave me at Easter (shutting his food off for 4 hours) could have killed my son because of dehydration. I had called them to help me with his pain and I received no help. He apologized (and I also have pain medication in case he needs it. I got that from JHU.)

We also gave Kevin his first real bath yesterday - he hated it. He fussed the entire time. Maybe he'll like the next one better. Oh - I hear his food monitor beeping - I better go. I'll write whenever I can - probably each day - but as you can see, I never know what time of the day it will be.

We see the request for new pictures - we have film to get developed and we'll get them on the web in a few days!

Our love to all of you!!

Wednesday, April 28, 2004 8:40 AM

He's home! We were discharged yesterday afternoon. The doctor had called us on Monday evening to tell us that the lab in CHOP would make due with only 8 cc's of Kevin's blood for the Alagilles testing. So they drew 4 on Monday and 4 yesterday. So Chris took off of work and went with me to the hospital yesterday. Kevin didn't smell very good. He smelled like spit up. So, we decided to give him a bath before we left. We knew we weren't going to have time to get it done last night with Gracie home. It took us a little longer to get out of the hospital because so many people were coming by to say goodbye to us. Lots of hugs. We were telling people that we hoped to stay away longer than 2 days this time! The doctor re-wrote Kevin's medication schedule which is great! No meds between 10pm and 7am. All I had to do last night was change his food and a few diapers. Chris slept with Gracie and I slept with Kevin. Kevin slept quietly until 4:30am. I held him for about 5 minutes and then he went back to sleep for another hour. The sun was starting to come up about that time so we just came downstairs for the rest of the morning. Overall he had a great night. He's sleeping on the couch now.

Chris and I have to get some tests done shortly for the Alagilles that will be sent to CHOP. We need eye exams, x-rays, blood draws and a couple other tests. The doctor at JHU said she would call our doctor to get all that set up for us. I just hope all of the information gets where it needs to. They also took pictures of Chris, Kevin and I to send to them. I guess to look over the facial features in all of us.

Kevin stayed awake the entire way home yesterday. And he didn't get sick at all. He kept looking out the car windows and looking at me. You could tell he was tired - but he was too busy taking it all in. Gracie came home about 5 minutes after we got in. She saw me through the living room window holding Kevin. I could hear her get excited and say, "Mommy's got baby Kevin. That's my brother." Then she came in and gave him lots of hugs and kisses. She got a little jealous last night when I was holding him - but she was also very tired. She was perfectly fine this morning. She came downstairs and started kissing his head and patting his back.

It's going to be pretty nice out tomorrow so I think we will go for a walk. Kevin also has lots of appointments next week and the week after that. One for blood draws, 3 doctors appointments, and he has to go with me to one of my appointments. We also need to get to the store to purchase a video camera. We've been meaning to do that for so long.

Well, I need to get going - I want to check on that baby! And there are several things Chris and I need to take care of around the house today.

By the way - he's smiling a whole bunch!!

Monday, April 26, 2004 7:26 PM

Kevin laughed for the first time today! It was brief - but it was great! Then I cried all over the poor kid. I cried alot today. It's mostly when I hold him and see him smiling and cooing at me. They are moments I'm proud of - but I cry because I think about not having those moments one day. I called Chris. He's very supportive. I need to get past this and concentrate on the happy times we are having with him now. It's hurts so damn much to look at that little face and know that he's going to leave us. And I'm frustrated because I have no idea how it will happen or when. And I'm angry because he will never grow up and there is so much he will miss. I guess I'm being selfish when I think about it like that. He will be in peace and comfort when that day comes. And I have to remember that I will see him again one day. We have to enjoy him while we can. He's already touched our hearts - and he will touch us every day that he is on this earth.

I signed the authorization for the genetic testing today. They need alot more blood than we thought. They said they needed 4 cc's a day today through Wednesday. But the doctor just called me and said they spoke to the lab at CHOP and they are only taking 4 today and 4 tomorrow. So, if they get the blood they need from him tomorrow - he will come home after that. The initial results could take up to 4 months. That is to find the gene that has the Alagille. If they can find it, then they will need more blood from Kevin and then Chris and I will also get tested. Those results will take 2-3 weeks. I started to cry and asked the doctor, "do you think he is going to be around in 4 months in case they need more blood?" She said that there was a very good chance that he would be. She said that his liver is doing "OK" right now and so is his heart. She also said that it could take "up to" 4 months to get the initial results. So it may not take that long. Hopefully it won't.

I received a phone call on my way to the hospital this morning from the Model Waiver Program coordinator. She is going to send me the application (30 pages!). This is the program that gets the State to pay for home care nursing for Kevin in the evenings. Our insurance company won't cover it. She said it would take 2-3 months to get it all in order. But that's better than nothing! I was thinking the other day that I could sleep from midnight to 6am, which is between his medication times. But since he is on Lasix, he can't go that long without getting his diaper changed! So, I'll have to be up a couple of times between then to change his diaper. Then I figured I could just take naps when he does. Not much will get done around the house during the day.

I had more to tell everyone - but it wasn't anything major. I need to get Gracie in the tub and get her hair washed tonight because I don't think I'll have time to do it tomorrow night if Kevin is coming home! Plus I told her I would play Barbie's with her....

Take care everyone!

Saturday, April 24, 2004 4:22 PM

Kevin is doing really well. You can tell he feels so much better. He looked to me like he had put on some weight in his face when I went on Friday. His weight is still fluctuating a little bit - but overall he is gaining. We had the doctors increase his feeds to 26 cc's an hour today. We'll keep him at that rate for a few days before we bump him up again.

They had their meeting on Friday. We were called by Dr. Schwartz about 5:30pm to go over Kevin's care because Chris and I had some questions. (Before I go there - I need to say that Dr. Spevack called me at the hospital on Friday and apologized for the info not getting sent to Boston and he would be sending it that day. His reason was because he was told they didn't have a strong GI/Liver team there so they only decided to send Kevin's info to CHOP. I told him that we had to at least try Boston. We didn't want to wonder years down the road, "What if?" He understood.) Back to Dr. Schwartz. She's the Chief of the Peds GI branch at JHU. She told us that she had spoken to CHOP. They are willing to do the Alagilles testing on Kevin and us. The doctor at CHOP had heard of 2 children in the world with the same condition as Kevin that had undergone Heart/Lung/Liver transplants. He was aware that one didn't survive and didn't know the outcome of the other. We were told that if Kevin had the heart and lung transplant, that his liver would probably fail immediately and need that transplanted also. But there was no place that would be able to handle it. No place was competent enough to do the operation for Kevin. She also stated that death was not always the worst outcome in certain situations. She was trying to tell us that we shouldn't put Kevin through suffering when it would probably have a bad outcome. Chris and I totally agree. She didn't even need to say that to us. But we need to know what our options are so we can be confident that we made the right decision. If we don't ask - we would never know. So, we're asking.

As for the Alagilles testing, they will be sending Kevin's blood sample to CHOP. They need to get the sample before he is discharged next week. The problem is that they need 6-8 cc's of blood from Kevin. That is too much to take from him in one day. It would have to be done over a 2 day period. But the doctors aren't even sure if they can do that for fear it could ruin the blood for testing. They will be contacting CHOP to make sure they get all the info they need before they draw Kevin's blood. My mom brought up a good point last night. Why can't they just test Chris and I and not test Kevin. The whole purpose of this is to see where the Alagilles came from. But we asked the GI doctor today and he told us that Kevin had to be tested first so they would know what genes to look at in Chris and I. Dr. Schwartz also told us that there is a 60-70 percent chance that Kevin has a new mutation of the gene and Chris and I may not have it at all. That would be the best outcome, so Chris and I could have more children without fear that this would happen again. But honestly, if I were to get pregnant again - I would be terrified. Even if they told me everything would be OK. But I'm not going to worry about that yet. The testing would take a couple of months before we got any results. After we hear from Boston, Chris and I are going to meet with Dr. Spevack and Dr. Schwartz to discuss Kevin's long term care. That will be in a couple of weeks. That is going to be a difficult meeting for Chris and I. Very difficult.

The GI doctor that is taking care of Kevin day to day (Naseem) called us last night about 8pm. She told me that a Hospice nurse was in the meeting they had so she could get filled in on Kevin. The cardiologist spoke to her about Kevin's heart condition. Then the GI team spoke about his liver condition. And how these 2 conditions are working against Kevin. I told Naseem that it was our understanding that Kevin would more than likely pass from liver failure because he could go on for a year or so with his heart defect. She said we were probably right - but reminded us that Kevin is immunosuppressed. If he were to get pneumonia or something similar, it could kill him. He wouldn't be able to fight the infection like a normal child and it would be hard to cure him. I guess that's why he's had a few infections internally so far and was put in intensive care for those. We also inquired about Kevin having pain medication at home in case he were to need it and they agreed. I assured them that we would only give it to him if needed. We don't want Kevin drugged when it isn't necessary. And I wouldn't use the medication for myself (like I'm sure some other parents would.) Naseem told me that they think Chris and I are wonderful parents and dealing with this very well. They trust us.

Kevin's day today went by very fast. He didn't fuss at all and was a good little boy. I have to say that he did finally "christen" his mommy. I have now been peed on! I slipped up and didn't get his "parts" covered in time! I was doing so well with that too! I went almost 6 months. The Child Life Specialist asked Chris and I if she could take some pictures of us interacting with Kevin so she could use them in a presentation. We said it would be OK and she got some nice pictures. What else....oh, his rash on his hiney is finally gone. That was pretty bad. His IV medications stop on Sunday night. And they will probably discharge him by Tuesday. That's about it I think. I need to go relieve my parents from Gracie. Although I hear they had lots of fun with her today. They took her to a carnival at a school and she had loads of fun. Mom said that Gracie was going to take a pony ride, but when she got on top of the pony she freaked out. Gracie said it was too high. So, no pony ride. Gracie has also been saying her prayers at night. I need to get it on video because it is just so adorable!

I'll update again on Monday. Keep up those prayers! He's feeling great! Thanks everyone!

Thursday, April 22, 2004 9:26 PM

Kevin's weight went up a little bit more today. They had pushed his feeds up to 26 cc's per hour. They went a little too fast. Chris requested that he be put back at 25 for now. We think he will handle it better if he is increased every few days instead of every day. He said that Kevin had another good day today. Just a few spit ups and gagging. But after he would spit up - he would start to smile. He's such a cutie. I will be going back tomorrow and I can hardly wait! I miss him so much! The doctors have their meeting about Kevin tomorrow. It's at 3pm. We requested that someone call us at home to discuss the outcome of the meeting since we won't be there. They assured us they would. We don't want to wait until Monday to find out what was said. Chris spoke to the lead GI doctor today and asked about the information being sent to Boston. She told Chris that she was also under the impression that info was being sent to them. Nobody knows why it wasn't. She also tried to get a hold of the doctor at CHOP regarding testing Kevin for Alagilles. He wasn't available so she left a message. This isn't something that Chris and I are just going to let go. The future of our family relies on this outcome. We think Kevin may be coming home late next week. We'll see what they say in the meeting tomorrow.

I've got to get Gracie off to bed - it's late. She is here in the basement with me while I'm typing. She told me she saw a spider. I turned around and she had a cricket smushed in her hand. It freaked me out. ICK! (At least she didn't eat it. She did that last year with a bug.)

Our love to all!

Wednesday, April 21, 2004 9:58 PM

Chris told me that Kevin had a really good day today. When I called to check on him this morning they told me he had a good night. But after a few questions, I found out that he had his NG tube changed (again) and his IV stopped working in his foot. She told me he had pulled his NG tube out (he's never done that before), and they put a new IV in his left hand. I asked if they caught the IV in time or if it did any damage to his hand. She told me it was caught in time and no fluids went into the tissue of his hand, so it didn't swell. I don't see how getting a new NG tube and getting a new IV is considered to be a good night. I just got off the phone with the nurse for tonight and I don't know who she was. I asked if she had taken care of him before and she told me "A long time ago." So I probably won't get any sleep tonight! I'll be too busy worrying about him. But I'm sure he'll probably sleep through the night. Chris told me that Kevin had LOTS of smiles for him today. Chris was very excited when he called me on the phone to tell me about it. Of course, I cried. (I'm starting to cry now too.) I miss him so much. I haven't seen him since Sunday. But I'm so glad that his daddy is there to take care of him and hold him. We have a few pictures of Kevin on the refrigerator and I cried a few times when I went to grab something out of the fridge! I won't be going back to the hospital until Friday at the earliest. Hopefully it will be just one more day for me. Chris told me that there will be a meeting among the doctors about Kevin on Friday to make sure they are "all on the same page". I guess to decide how is care is going and when he can come home. Chris also mentioned to them about Kevin's information being sent to Boston. The Patient Advocate (Barb) was very upset about the lack of communication between the hospital and us. She was in that meeting when we were told about Kevin's future and when we were told that they were going to get 2 other opinions for us. She was also under the impression that we were still waiting to hear from Boston - not that a package was never sent to them. Chris and I know what Boston is going to say - but it's worth a shot. It's one more opinion. We have to try. Chris also told me that the social worker approached him about the "Make a Wish" foundation. Chris told me that we only have one wish and they wouldn't be able to help us. The social worker said something about a trip to Disney or something like that. That would be for us, not for Kevin. So Chris and I both agree that the purpose of the foundation is for the kids, and Kevin is too small to get any benefit from it. We'll leave his wish for another child. I had a dream last night that Gracie grew up and had her own baby boy. She told me that she wanted to name him Kevin, in honor of her little brother. So, I woke up crying - again. She asks about him. I keep telling her he is in the hospital and will come home again. She always says, "OK". She has two stuffed animals that are now called "Baby Kevin". She sleeps with both of them. She won't go to bed without them.

Well, my sleep medication is starting to kick in! I hope I covered everything that has happened today. We'll pray for another great day tomorrow. And the day after that....and the day after that....

Lots of Love to everyone!

Tuesday, April 20, 2004 12:20 PM

Kevin had a pretty good weekend. And he's feeling better each day. He had some friends visit this weekend which was nice. I started to not feel well on Sunday, so I haven't been able to see him since Sunday. I have a stomach bug so I can't be around him. (I really hope Gracie doesn't catch it! I also hope that he doesn't catch it from me on Sunday!) I called yesterday to make sure he was being held and cuddled, which the nurse said he was. Chris went to the hospital to be with him today. When I called to check on Kevin, Chris was busy holding him. Kevin has an open sore on his bottom so his diaper needs to be changed very often and medication needs to be applied. I feel better with one of us there to make sure this gets done. The nurses get busy and sometimes forget - that's how he got the sore in the first place.

Kevin's IV in his foot is still working well. We still don't think it will last the full 2 weeks it needs to because he has never had an IV last that long in the past. But this foot hasn't had an IV in it since it got burned - so maybe it will last. That would be best so he wouldn't have to get a new one put in. The doctors told us this weekend that if it comes out, we could switch him over to oral antibiotics and take him home. We asked if oral was as effective and they said there was no way to tell. The infection could come back immediately. So, we opted to keep him in the hospital and go for a new IV if this one fails. The full 2 weeks on IV would be best. We don't want Kevin to get the infection back and have to go through all that pain again.

I just got off the phone with Chris. He said that Kevin has a new neighbor - with very rude parents. He said they are yelling and treating the nurses badly. I told Chris I don't want them to keep Kevin awake. From what Chris told me, it sounds like these parents are more concerned with themselves rather than the well-being of their child. Unfortunately, we see that alot at these hospitals. I hope they are gone by the time I can get back to the hospital. (For their sake.) Chris also said that they are trying to coordinate getting Kevin's papers to Children's Hospital of Boston. They hadn't sent his papers there - only to CHOP. We also need to stay on top of the doctors to get the Alagilles testing done at CHOP.

Kevin had dropped a little in his weight, but has gone up in the last 2 days. I think their weight is a little high because it's alot higher than when he was admitted just a week ago. He is about 9 1/2 pounds according to their scale. I have a scale here at home that I will weigh him on once he gets back here. That will be more consistent.

Well, I'm not feeling well and I need to lay down for a little bit. I took a nap yesterday. That was my first nap in months. It was nice. I hope I'm feeling better soon so I can get back to Kevin. But I at least feel better knowing that his daddy is there to take care of him today.

Friday, April 16, 2004 8:07 PM

Kevin had a pretty uneventful day. He did need a couple of doses of pain medication, but other than that, he was just fine. I held him alot. I just lay him over my shoulder on my chest and he falls right to sleep. I don't even have to hold him there - he sticks! It's pretty funny to see me laugh when he is asleep on my chest because he just bounces. I feel bad that I have gained so much weight since I had Kevin, but all I've done is sit in a hospital all day long for the last 5 months. But hey - Kevin thinks I'm comfy so I guess it's OK. When I called to check on him tonight he was screaming in the background. The nurse said he had been asleep since I left at 2:30 and had just woken up. She was in a hurry to get off the phone because she wanted to tend to him. She told me that he had gagged a little bit last night and once for her in the morning before I arrived - but he didn't throw up. She said they just stop his feeds for a few minutes and he gets better. He didn't gag at all while I was there today.

Shortly after I arrived home I received a call from Dr. Spevack, his cardiologist. He had heard from CHOP and he told me that they also didn't think that they could help Kevin. His heart defects are just too complex. I wasn't really surprised - but I was hurt. I tried not to get my hopes up - but I did have hope. Of course Gracie brought me a tissue. Chris wasn't home at the time, so I had to tell him when he got home. He's confused and hurting. Gracie asked him if he was crying like mommy and then she gave us both hugs and kisses. We are going to lose our son. We don't understand why this is happening. We don't understand why he has had so much pain. But I told Chris tonight that as long as Kevin fights, we should fight for him. As long as he keeps getting over his little hurdles, we should keep seeking treatment for him. We are aware that there will come a time when it will no longer be possible. But we just try not to think about that. Chris said this is the hardest thing he has ever had to go through. I told him that it's going to get alot harder. But we'll be OK and we'll get through it.

The doctors told me that they want to persue testing to see if Kevin has the Alagilles Syndrome. (His gene test showed negative, but they still think he has it.) I asked what point there was and the doctor told me that if Kevin does in fact have this, there is a 50 percent chance our next child will also. She blew me away. All of the sudden we are faced with not having any more children. There is absolutely no way that we will take the risk of having this happen to another child. We won't let another child go through all this pain. I have been sleeping with Gracie because it's easier for me to get rest so she doesn't keep calling me in the middle of the night. I really hold her tight. The other night I just watched her sleep and I started to cry. I don't want her to be an only child. Chris and I were planning on having 1 or 2 more kids. I'm also sad that she won't grow up with Kevin. I want her to have a sibling that she can go to for anything. I want her to have it most for when she is an adult. I don't know what I'd do if I didn't have my sisters to talk to when I needed to. God, it's just so much to take in. It's not like we didn't have enough on our minds already. Now this.

I need to get - Gracie wants to go visit her Gan and Pop. I don't really want to think about this anymore anyways. Although I'm sure it will be on my mind at 3am.....

Thursday, April 15, 2004 7:19 PM

Kevin is still having some issues with pain. I spoke to the doctors about it. I had noticed when he had one of his leads put onto his belly that he just went crazy. They told me that Cholangitis is painful from the inside and outside. There was a meeting about Kevin today with the doctors, a nurse, the child life specialist and the patient advocate. I wasn't in it, but I was spoken to afterwards. As Kevin's parents, are main concern is with his pain. We want him comfortable. The doctor told me that she will allow for Kevin to have Oxycodine. She prefers this over the Motrin because the Motrin can upset his stomach (in addition to thinning his blood). Speaking of upset stomach, he did get sick a couple of times this afternoon. I'm not sure if it was from the Motrin or because he just doesn't feel good. The doctor said she can write in his chart for him to have it every 4 hours or just as needed. I requested as needed. When I called the nurse a few minutes ago, she said that he was comfortable so far and she hadn't given him any. But she would pass on to the next nurse that he is allowed to have it. Hopefully the antibiotics will start to get rid of his infection and the need for it will pass. I asked if it would be possible for us to have Oxycodine at home in case it is needed. She said it would be OK. The other issue was his IV access. She told me that she didn't think the one in his foot was going to last the entire 2 weeks he needs an IV. I agree that it probably won't. She said that they could switch him over to oral antibiotics when the IV failed, but she wasn't sure if it would be as effective. I told her that if they left him alone and didn't request any more blood draws, that maybe his veins could have time to heal and a new IV would be possible later on when it's needed. She agreed and said they shouldn't need anymore blood until Monday or so. It depends on how he does. The other option was a PIC line and we both agreed that wasn't a good idea for Kevin and isn't going to be done. I also asked if his nasal canula could come off. He hasn't needed oxygen and it is just bugging him to have it taped to his face and up his little nose. She said it could come off. (And it has.)

That's about it. They didn't weigh him last night so I have no idea what his weight is. They weighed him at 4.43 kilograms his first night which is really wrong. He couldn't have gone up that much in one day. He was 4.15 kilograms in the ER. That was with his onsie on. So that is 9 pounds 2 ounces.

So, our main goal is for him to be better and home in a couple of weeks. Our first goal is for him to get rid of his pain and be comfortable. We will all keep praying for him and get him better soon!

Wednesday, April 14, 2004 9:38 PM

Kevin's day started out busy today. His SPO2 monitor wasn't picking up very well so his sats looked really low. Then the guy came to take blood from Kevin and they got even worse. Kevin was already crankier than usual and this guy didn't help him out any. The guy pulled up Kevin's sleeves and was a bit upset. He said, "God, what have they been doing to you little guy?" He also said that he didn't know where he could stick him because he had been stuck so much recently. (That didn't make me feel good.) So, he stuck Kevin in the side of his hand, which didn't work. But Kevin was crying so hard, it opened an older wound where they had already drawn blood. Then he stuck him in his ankle. Luckily he didn't need much, because Kevin didn't give much. He asked the nurse to tell the GI doctors that they need to either put in a pic line or leave him alone for a while because he wouldn't be able to stick him again anytime soon. I picked Kevin up after all that and calmed him down. I looked up about 3 minutes later and the room was full of nurses and doctors. They were all scared about his SPO2 sats. He was OK. They were a little low, (and accurate once the SPO2 monitor was changed) and he received some oxygen. But it wasn't for long. He was off the oxygen and back to normal in about 10 minutes.

When the storm settled, Kevin had a visitor. It was Dr. Parson's, his last GI doctor that doesn't have him anymore. He is still on vacation but he came in to see Kevin. He had heard that he was back. It was a nice visit. He's a great doctor. Shortly after he left Kevin got very fussy. He wasn't consoled very easily. You could tell he was in pain, but we didn't know why. We asked the nurse to page the doctor so he could get some Oxycodine. She did and then she came over with Motrin. Motrin? He isn't supposed to have Motrin. So why is the doctor telling her to give it to him? So, we said no Motrin and to call the doctor back. The doctor did and Chris talked to her. It didn't go very well. It ended up that the doctor came to our room. Kevin got his Oxycodine in the end. And he was MUCH better after that. He stayed awake for another hour and then drifted off to sleep as we were leaving. I already spoke to the nurse tonight and told her that if he is fussy and doesn't console easily that I want her to page the GI doctor and give him pain medication. She said she would. Unfortunately, so did the nurse last night and she didn't. Which meant Kevin was up most of the night last night.

After he received his medicine and was feeling better, he had more visitors. Another old GI doctor came in because she had also been told he was back (Dr. Kline). Then the security guard from the Peds ER came up because she saw our name on the list. There was another woman in the room visiting Kevin at the time and they started to argue over which one of them was his girlfriend. Then another nurse came in to see him. She told me that she was called at home yesterday by the nurse who received him when he was admitted. She called her and said, "Guess who I'm taking care of?" She said she felt bad for us, but they just love taking care of him. I'm glad he has some really great nurses. Unfortunately, others aren't so wonderful and don't always listed to our wishes.

The doctor told us that they are treating Kevin for Colangitis. (I'm not sure if that is the exact word or if I spelled it correctly.) He was on antibiotics to keep him from getting that, but it didn't work. I asked if it was painful and she said it was. His culture didn't come back positive for it, but his blood tests from when he was in the ER led them to think that he has it. He will be on antibiotics for 2 weeks through his IV to treat that. So he won't be home for at least 2 weeks. We discussed the potential for him to get a pic line and we agreed that it isn't best for him to have one. So he won't be getting one. They said that his IV in his foot won't last 2 weeks, for him to get all of his antibiotics, so he will eventually need another one. That's our only option. When this one fails, he will get a new IV. It will be hard, but not as hard as last time because he was so dehydrated.

Our cousins came by tonight with a lasagna dinner that was great (and very filling). Thanks Janene and Matt! It was a nice visit. We don't get a chance to talk to them much. Chris is going back to work tomorrow, so I'm back on my own. I need to get to bed because I'm exhausted and I have a very full tummy!

Thanks for your thoughts and prayers!! I'll give him lots of kisses tomorrow for everyone!

Tuesday, April 13, 2004 9:09 PM

Kevin is doing much better! He had a good night, although he had many blood draws. They had to keep testing his Potassium level. It was extremely high, which scared them because it could have killed him by going into cardiac arrest. His levels were high because of his fever, which caused him to be dehydrated. There were a couple of other factors, but I can't remember what they were. I forgot to write them down! They weren't the main culprit - the fever was. Anyways, his is on major IV fluid. So much that his face and eyes were getting swollen. The extra fluid works to "dilute" the potassium in his system. They also put in an extra IV. The one from the ER stopped working, so they put a new one in his hand. They had a really hard time because he was so dehydrated so it wasn't in all the way, but it was working (not well). When Chris and I arrived they were putting another one in his foot in case the one in his hand stopped working. Which it did. It was hurting him. He would just keep screaming. We complained (and complained, and complained) so they cut back on the fluid going in to his hand. The nurse flushed it and he went crazy. Then they stopped it all together - but they wouldn't remove the IV. He was going to be moved to the 6th floor out of ICU, so Chris and I needed to stay to make sure his new nurse was aware of the problem. We didn't want it to stay in. All of his cultures have come back negative so far so he shouldn't need the IV access too much longer anyways. The nurse said it was still in when we called at 6pm, but she hadn't flushed it. She said that she would tell the next nurse to flush it and if he cried, to remove it. But he was sleeping comfortably since we had left. His sats were good and his weight was 4.20 kilograms which was up from 4.09 when he was discharged. That is 9 pounds 4 ounces. He was also back on full feeds at 24 cc's per hour with no gagging or throwing up. (Oh, I was also told that cultures usually come back negative because by the time the fever sets in, the bug has already progressed and the fever is trying to fight it. A culture would come back positive BEFORE the fever starts - but you don't know to do it because you don't know they're sick yet!)

Before Chris and I got to his room this morning we ran into Dr. Lau. He had just left Kevin and said that he was feeling well. We asked him about the doses of Motrin and Tylenol that he had gotten. It worried us because we always heard how bad it was for Kevin. But Dr. Lau said it wouldn't cause any problems at all for him. (We heard from a nurse on the 6th floor that Dr. Lau was very upset when he was told that we still hadn't heard from CHOP. He said it was "unacceptable" and stomped away.) Kevin also had a few people stop up to see him from the 6th floor staff when he was still in the PICU. The Child Life Specialist (who adores him), the Patient Advocate (who also just loves him) and the social worker (who needs to work on his social skills). : ) (smiley) I just remembered that we forgot to bring home Kevin's hair! They left it taped to his crib in a baggie for us. Poor little thing - they shaved almost the entire right side of his head. Luckily they stopped short at the part where he likes to grab it to comfort himself!

Well, it's after 9pm and my eyes are ready to slam shut! Thanks for all of your prayers! They always seem to work!

Our love to everyone!

Monday, April 12, 2004 6:56 PM

Kevin had a great first night home, he slept through the night. His first full day, Saturday, was pretty good too. But, Saturday night, starting about midnight, Kevin started to get VERY irritable. He was trying to sleep, but he would cry out every few minutes. It seemed like he was in pain. Since he has the liver and blood clotting problems he is not able to take Tylenol or Motrin, so I couldn't help him in that way. I just kept trying to console him. As the day went on, Sunday, he just got worse. We took him with us to mom's house and we called the Hospice nurse from there that evening. He had been throwing up a little bit, but he was gagging alot. First of all, I told the nurse that we hadn't changed anything with his feeds or medications since he left the hospital, so nothing in that area should be the problem. But she told me that "things can go downhill pretty fast, so that doesn't matter." I told her to hold on and gave the phone to Chris. That really bothered me. I understand that she has been dealing with these problems for a while because it's her job - but this is our first time. She doesn't know Kevin or his past so she didn't have any right to say that to me. She acted like he could die next week or something and that's not the case with him. I just think it was inappropriate for her to say that to me. And I'm going to say something to Kevin's Hospice nurse manager about that. She really did try to help - but that just wasn't right. Anyways, she told us to stop his feeds (which we had already) and keep him off for 4 hours. We also were told we could give him some medication for nausea (2 drops on his tongue) if needed. (We ended up doing that later - but it didn't help at all.) So, he stayed irritable and gaggy the entire time. He got a little bit of rest laying on his Gan for an hour. That was the most sleep he had since midnight when all this started. Mom kept Gracie for us for the night and we brought Kevin home. I changed him over to 1/2 formula and 1/2 Pedialyte because he stayed gaggy. We called the JHU GI doctor on call (who knows Kevin) and I double checked his medications and doses with her. He was off feeds for so long, that couldn't be the problem. We thought maybe we had an incorrect dosage of medicine and maybe we were making him sick. But, the doses and meds were fine. She said to switch him to Pedialyte only and it should help. Then maybe try Mylanta or Maalox if he was still miserable. So, the Pedialyte only didn't work and then we gave him the Mylanta. About 2 minutes later, Chris called the hospital back because Kevin was getting a fever (100.3). Plus I noticed he would only gag when he was sat upright. She told Chris we needed to give the Mylanta time to work and to "wait it out at home." Chris got off the phone and we immediately packed up to bring him to the emergency room at 2am. We didn't care what the doc said - it just wasn't right. He was absolutely miserable and we couldn't keep him going through whatever was hurting him. We got at JHU at 3am. The security guard told me that I needed to wait for an escort before I could go to the ER. So I waited. And waited. Then I asked if I had to wait if I knew where it was. He made a call to check and said I had to wait. So I waited. And waited. Kevin kept crying. Then I asked where this escort was coming from. He said, "I dunno." I waited. Then I saw the escort coming from the opposite direction that I needed to go. I told him, "Come on" and I started to walk the other way. He didn't even try to keep up and he said, "Do you know where you are going?" I told him I did and he told me to go ahead. Man was I FURIOUS!!! I said, "Thanks for wasting my time!" as I went down the hall so he AND the jerk security guard could hear me. (I had an extra word in my sentence but we won't go there.) They had us waiting 10 minutes for NOTHING. I usually don't get mad - but that was 10 more minutes Kevin had to wait unneccessarily. So, we got into the ER and his temp was 104 by now. His heart rate was 200 bpm and his SPO2 was down to the low 60's. They put hain tonight so I think I'll take it down and give her a bath. Or I may skip that and take a bath in it myself tonight!

We'll keep everyone informed as much as we can. Thank you for all your messages. Chris and I enjoy reading them each day. We know how much Kevin is cared about by everyone and we appreciate it so much. Our love to all!

Saturday, April 10, 2004 3:19 PM

The Easter Bunny has brought the McLane family and early gift! Baby Kevin is home as of last night. He has been doing really well so far. Chris stayed home to clean yesterday and our neighbor Judy went with me to pick Kevin up. It was a long process and there was a lot to get organized for Kevin before he came home. We are grateful that Judy could stay with me and help me out. We have had people in and out of the house all day today to help us manage his care. Hospice has started for Kevin and we met one of his nurses today, Wally. Nice young man. He is also a minister at his church. He will be one of 3 nurses caring for Kevin. Since Kevin is stable, we will only have Hospice come 3-4 times a week. Hospice is taking care of a lot for Kevin. They arranged for home oxygen, an SPO2 monitor (both which came today), they will have his medications made and delivered, they give us all of our supplies for him, have someone available to sit with Kevin for 2 hours if we need a break, they also have a social worker and chaplain available to us 24 hours a day (and the nurses are too.) I had to get 1 weeks supply of Kevin's medications from JHU yesterday to get us through until Hospice could deliver the rest. That took a long time. We finally got it (which cost almost $200), and headed home. Poor Kevin, when we were walking to the car the wind blew and took away his breath. Poor guy - you should have seen his face. After I got a blanket over his face he caught his breath, but he was ticked off! He stayed awake the entire way home. Then started to throw up when we were about 5 minutes away from home. He's been doing great since then. There were balloons, flowers, cookies and a cake from our parents and our neighbors. I told Chris, "Aren't you glad we bought this house and have such wonderful neighbors?" He certainly agrees. Gracie was at Gan and Pop's house so she came up after we got Kevin in the house. Gan said that Gracie wanted to show Kevin her shoes. She is really good with him. She keeps kissing him and she parks her chair next to his bouncy seat and just sits there and watches him. She keeps telling us that he is her little brother.

Mom and Dad went out and bought an airbed for me so I can sleep in his room with him. Of course - Gracie is in it too. Kinda tough in a twin bed. I have to give him medications and food at midnight and then again at 6am. So at midnight (I was still awake), I took care of him and then put Gracie into her own bed. Kevin slept through me giving him all of his meds. So, at 3am, Gracie came back in the room and said, "Hey! I'm supposed to be in that bed! On that side!" So I put her in bed with me again. But she didn't bring in her "B" (pacifier) or her blankie so I had to go retreive them from her room. Then about 4am, Kevin lost his "B" and started to cry. I got him quiet in less than a minute. He slept until about 6:30 when he lost his "B" again. Other than those 2 times, he was perfect. He has never slept in the dark with no noise around him before. Nobody coming to take his blood, or give him shots or take his vital signs. He slept great. We have a nightlight so that I can see what I'm doing when I give him his meds. He also has a big dragonfly balloon over his crib to look at that was brought yesterday.

We are starting to get things under control here. Kevin has 11 medications that are given around the clock, plus we have to keep his feeding pump going. I think it went pretty smooth for our first night. At 10PM, after I gave him his meds, I would make up the meds for midnight and then at midnight I made them up for 6am. I just put the correct amount in the syringes and put them aside or in the fridge if needed. And I put enough food in his pump so that it needed to be refilled at midnight and 6am, when I was up already. There are also 3 different syringes to use, depending on the meds. It's no walk in the park - but it's not so bad. I haven't pulled my hair out yet (although it's falling out pretty well on it's own from stress!), and I haven't killed my husband yet. Seriously, we are doing OK. Many people at the hospital have said how amazing Chris and I are doing with all of the stress in our lives.

Well, I could keep going and going - but I really want to go check on the baby. Even though I know he's asleep. Oh, we also had him hooked up to his monitors all night and they didn't alarm. I didn't think they would because he hasn't had trouble with his heart rate or breathing. I think that as I get used to him being home I will be able to move out of his room until things get worse down the road, then I'll move back in. But a baby monitor should be good enough for now. We will also be buying the camera for his room that his Pop found on the internet.

Well, take care everyone! I will still be updating almost daily to let you know how he's doing! Keep those prayers coming! They are working because he is feeling great!

P.S. - there are new pictures of Kevin on the photo page! Plus more on the link at the bottom of the main page (right above my e-mail address.) It takes time for them to load, so be patient and give it a sec - they should all come up. Kevin's Aunt Linda has done a wonderful job with those. Thanks Linda!

Happy Easter!

Thursday, April 8, 2004 10:12 PM

Kevin is still doing really well. He was down to below 9 pounds, but he is back up to 9 pounds even. He is at 24 cc's per hour so he is getting the minimum he needs. I'm not sure if he will gain weight at this rate, but we hope that he won't lose weight any longer. The nurses who aren't even taking care of him come in to see him during the day. Lots of people come to see him. Even the security guard from the Peds ER comes to see him on her break. He just has them all wrapped around his little finger! He smiles and talks to everyone. He also showed me his temper today. I heard a baby crying when I was coming back from lunch and I remember thinking, "Gosh, that kid is pissed!" Then I went into his room and it was HIM! I have never heard him scream like that. Not even when he is in pain. He was just angry. As soon as I picked him up he was perfectly fine. He stopped crying before I could get him on my shoulder. The poor nurse was trying to coddle him but it wasn't working. I told her that all she needs to do in the future is just pick him up. As she saw for herself. His new thing is to cry so hard that it makes him gag. But he stops when you pick him up. He's a smart kid.

He's also starting to sleep through the night pretty well. I told them to have him trained to do that before he comes home! Although I will have to be up every 4 hours to give him medications and refill his formula bag. But that's OK, I'll get used to it. It will be worth it to finally have him home - no matter how long it is.

Well, Gracie is sound asleep so I think I'm going to take a "tubby" all by myself! No Gracie and no Barbies!

Take care everyone!

Wednesday, April 7, 2004 8:29 PM

Kevin is still doing well! The GI team was rounding when I arrived. They came in to see Kevin and he was smiling and cooing at them. They were all impressed with him and were saying how cute he was. You could see that he put them in a good mood. They told me that they spoke to the cardiologists and they have stopped the Lovenox injections! He was getting those twice a day in his legs. His thighs look just awful. When I gave him his bath today I took 7 bandaids off of his legs. His weight is down just a tad. But he went up to 23 cc's today and will go up to 24 cc's tonight. That is the bare minimum he needs. I saw Dr. Lau today and he asked me if I had heard any news. I told him I hadn't and he said they will call Philly (CHOP)again today. I asked him if he was comfortable with Kevin coming home and he kind of shrugged his shoulders and hesitated to say anything. Then he said that Kevin had a few good days and his sats were good but...I asked, "But what?" He said that he wanted to wait and hear what CHOP had to say. He is really hoping that they have found something he hasn't and can be able to help Kevin. He told me that he really hopes that he is wrong. He likes Kevin. He's not a doctor that shows any feeling - but you can tell that he cares about Kevin.

So, I'll just keep waiting and see how he does. Hopefully he will get up to the calories he needs and will start to gain weight. The GI doctor told his supervisor that he thinks his cheeks have gotten chubbier. He smiled a bunch today. Then he went to sleep at lunchtime and didn't wake up until after I left! (I was really tempted to wake him up so I could spend time with him.) But I didn't. I'll spend more awake time with him tomorrow!

As always - thank you for your thoughts and prayers.

Tuesday, April 6, 2004 9:56 PM

Kevin is still doing great! So great that I've asked the doctors when he can come home. They paged one of his doctors for me and he came to speak to me today. He said that Kevin needed to stay until they hear from the hospital in Philly. Just in case there is that one in a million chance that they will come back and say they can fix Kevin. That way he could be transferred. I told him that Kevin can leave from Rockville just as easy as leaving from Baltimore. This way he would at least have a day or two at home. He also said that they need Kevin to get up to 24 cc's per day minimum. He's not getting the calories he needs yet. (He is at 22 cc's now and weighs 9 pounds.) I told him I could bump him up 1 cc per day at home. My concern is that Kevin is doing well now - but as we have seen in the past, he doesn't always stay well. I sure hope he does, but there is a chance he could get sick and need to go back. I at least want to have some time with him here at home. We know that Kevin will get worse, but JHU will treat him and release him so he can be at home. Hospice will work with us to make sure he is here and comfortable. I don't want him to die in a hospital. (I'm getting way off track...)

So, this doctor (who has been WONDERFUL) is going on vacation tomorrow and won't be back until Tuesday. He told me that he hopes not to see me there when he returns. Also, he will no longer be Kevin's doctor because it's time for a rotation change again. As we were talking I got upset, which in turn got him upset. He told me he cries too about Kevin, but he does it at home. He said he thought Chris and I were awsome and great parents. He is a great doctor - he has such a great bedside manner and he really cares. I also asked him about the Lovenox and told him that someone needs to show me how to give injections to Kevin because I wasn't planning on staying around for 12 weeks (which is when he can stop the injections.) He said there was no doubt in his mind that I couldn't handle it. Then he left. I'll have to get his e-mail address so I can keep in touch with him.

So, as I was waiting for the elevator, the social worker got off. He said he was coming to see me. He told me that he, the patient advocate and the GI team leader had just had a meeting about Kevin. They are working on releasing him. They all feel that he should come home. Dr. Lau also agreed. I'm not going to say when because, as we know from the past, things don't always work out and everyone gets disappointed. So, once I get a definite date, I will let everyone know! I'm trying not to get too worked up myself - but it's hard. He looks so good right now. It will be a good thing for him to be home. His Great Grandma is visiting so hopefully she will still be here when he arrives! Keep him in your prayers (as we know you all do), so he can stay "healthy" for a while and enjoy being home!

Time to go. Gracie is still up! (And I need to go call Kevin!)

Lots of love to everyone!!

Monday, April 5, 2004 9:28 PM

Kevin has been having wonderful days! His SPO2 sats are still great and he has been in such a great mood. Today he was cooing and smiling alot. Chris started back to work today, and he already misses Kevin. But hopefully it won't be for long and Kevin can come home shortly. I spoke to one of his doctors this morning and he told me that the reason they are holding Kevin right now is primarily in case Philly or Boston asks for more tests before they make their decision. They are also still getting his feeds on track. He is up to 21 cc's per hour on 26 calories. The doc said that their goal is 28 cc's per hour on 26 calories. But if he can't tolerate the 28 cc's, they will lower the cc's and increase the calories to 27 or higher. There is a certain amount of calories he needs a day in order to gain weight. The doctor also told me that he should have listened to me sooner about the ND tube. He said that my instincts were right and a mother's instincts usually are. It was nice to hear that.

Kevin still hasn't thrown up with his new NG tube and only gets a little gaggy when he gets one of his liver medications. It is an antibiotic and it's a large amount. If it's given to him slowly, he's OK. So I asked the doctor today if it can be split into 2 different doses. She told me it already was...so I gave her a look and then she said she'd check anyways. Then she came back to me and told me it was one large dose and she would change it to two doses a day instead. (These people should know by now that I know my child and I know what I'm talking about!) He is still on the Lovenox injections twice a day for a blood thinner since he clotted during the cath. I asked how long he would have to be on it and she said 12 weeks! 12 weeks?? That's a long time to be getting shots in your arms and legs! I asked her to check wiht the cardiologists and find out why it needs to be so long since his pulse has returned in his foot and he is on aspirin which also thins your blood. I also told her he clotted worse from the 1st cath at Fairfax and he was taken off the Lovenox by the JHU Hematologist when he arrived in January. She said she would look into it. She better because I will stay on her about that.

Since Kevin was in such a wonderful mood today I figured I would get some pictures of him smiling The first 3 shots I took would have been great....but just as I clicked the picture, he stuck out his tongue!! Someone heard me talking to him about it and she came over and asked why I was yelling at her favorite baby. (I wasn't yelling, she was just kidding.) Then she took a picture while I got him to smile. I hope it comes out OK.

Uh Oh - Gotta go - Gracie just peed in her pants! She had a dry diaper ALL day long...until I took her diaper off...she's getting pretty good!

Saturday, April 3, 2004 8:46 PM

The ND tube is OUT and in the trash!! Kevin was switched over to a regular NG tube again on Friday morning after Chris and I met with the GI team. (And Chris is the one who put the NG tube in. It was his first time and he did well. But he was REALLY nervous!) Kevin has done really well with the new NG tube. No throwing up and no gagging. (Well, he gagged once this afternoon but that was because he was having a hissy fit because he was overly tired.) His SPO2 sats were great today too! All day! But his weight is down to 8 pounds 13 ounces. He will go up 1 cc per day on his feeds until he gets to 30 cc's (he is now at 19.) His calories are at 26. The intake he is on now is enough to sustain him, but not enough so he could gain weight or keep the weight he has.

When I called on Friday night the nurse said he had been doing well. Before I got off the phone with her she said, "Good luck with Sunday. You all are really good people and I hope the best for you." I said thanks and got off the phone. Then I went to Chris and asked what was so special about Sunday. He didn't know. Then I wondered if she knew she was talking to me and not mixing me up with someone else. (She's pregnant and the mind tends to go when you're pregnant, as all mommy's out there know.) But she told me things specific to Kevin so she knew it was me. Today I finally found out what she was talking about....the child life specialist came in and also asked us about Sunday. She said the doctors had written in Kevin's chart last week about a possible discharge for Sunday. But nobody told us. Kevin is getting close to coming home - but we still think it will be a week or so (if he behaves.) Chris and I are just taking it one day at a time. Chris will start back to work on Monday, so I'll start going back to the hospital alone. It's been very nice having company and assistance with the baby. I'll miss having him there.

Chris and I left a little late today because Kevin wouldn't go to sleep, although he was exhausted. Chris finally got him to sleep. When we were leaving I stopped to talk to our neighbors. They can't hold their baby because he had an operation and she can't be moved. Her parents are with her along with both sets of grandparents. They told me that they wanted to hold him last night but they weren't allowed. I told them that if they feel like it, they could hold Kevin whenever they wanted and I would tell the nurse that they had our permission. So I think Kevin will have some cuddling tonight. He had some last night from our neighbors that went to see him. His nurse said today that he was spoiled. So what? I think he deserves it after all the crap he's been through. When he comes home, if he wants to be held at 2am - he's got it! This kid is gonna get so much love. My lips are already constantly attached to his face, and arms, and legs, and hands, and feet, and tummy.....he gets about a million a day. And many more to come!

We pray he keeps having great days like today!

Thursday, April 1, 2004 10:00 PM

Kevin was still having problems this morning with his SPO2 sats and had to have blow by for a little while. (I just called to check on him and he is on it now too. That's the 3rd day in a row.) The doctors were there checking him out when we arrived. He has a new "lead" GI doctor. (It's OK because the last doctor was a jerk. I never mentioned him because he wasn't worth it.) The new doctor was informed about Kevin's problems and he thinks that maybe Kevin gags because he has too much saliva in his mouth and he doesn't know how to swallow it. I guess they will come up with a new idea every time their ideas are proven wrong. If that's the case, they will give him a medication so he won't have so much. (I guess that means his tongue will shrivel up like a raisin and they'll have to give him another medication to counteract that!) So, that big, honkin ND tube is still in. They said today that they thought part of it is still out of his stomach so they put it in another 4 cm. I told them if they put it down any further then it would come out of his ass. He had to go down for another x-ray and the doctor said that it was in the 2nd portion of his intestines, but he could get it in further. So, they took most of it OUT and put it back in again. Kevin was FURIOUS! Now it is in the 3rd portion of his intestines. Well, it WAS. When we called at dinnertime Kevin had pulled the tube out. (They hadn't taped it to his face very well by the time we left. He was asleep so they left him alone.) They took an x-ray and the end of the tube is now OUT of his intestines and in his stomach. Like an NG tube again. The doctors decided not to do anything with it tonight and he is on formula at 18 cc's per hour going into his tummy. They want to see how he tolerates it. I hope he does tolerate it and we can get that huge thing out of his nose. It was pretty frustrating to hear that he has gone through all of these x-rays, extra taping onto his face and forcing it down his nose so many times for NOTHING. Chris and I will have a chat with the doctors tomorrow morning to see what they are going to do....more news tomorrow!

Wednesday, March 31, 2004 10:41 PM

Kevin did OK today. Although he is still losing weight. He is down to 9 pounds 2 ounces. His feeds are 24 cc's per hour and he is getting 26 calories. They need to do something with that and get him going in the right direction again. Every time he gags they knock his feeds down. I don't think it's worth it. He gags no matter what his feeds are at so just leave it alone! I only got to hold him for a few minutes today. He slept almost the entire time we were there. I don't hold him very long after he falls asleep because he gets so sweaty and uncomfortable. So I just lay him back in the bed and sit next to him and make sure I have my hand touching him somewhere so I can feel him. He needed a little "blow by" oxygen today for an hour or so, but then we turned it off because his sats got back to where they needed to be. They are pretty good when he is sleeping and get a little lower when he wakes up. The nurse said he woke up shortly after we left today. She gave him a bath and cuddled with him (which I appreciated.) The nurse tonight, that came on at 7pm, said he has been asleep for him pretty much since she's been there. He'll probably be up and shakin' at 2am! That's about it. Not much is going on with Kevin at the moment. He's being a bit of a bad boy with his SPO2 sats, but other than that, he's been perfectly fine. They haven't said anything to us about him coming home. One of his doctors asked Chris and I this morning if we knew about a meeting between the GI discharge coordinator and the Bereavement counselor. We didn't. Of course we starting thinking that if there was a meeting with these 2 people, Chris and I should have been made aware of it. The doctor came back later and told us that there was no meeting. I don't know how she came up with the idea that there was one - unless maybe they are planning one. I dunno! I guess we'll find out later.

Well, I need to get going. I'm exhausted. (I took my sleeping medication almost 2 hours ago. Plus we had to go shopping tonight to get things for the house we needed and get Gracie some little Easter gifts for her basket.) Our neighbors were nice enough to watch her for us. I don't know where we would be without everyone's help.

God Bless you all! Keep our little butter bean in your prayers and that he gains weight!!

Tuesday, March 30, 2004 8:47 PM

Kevin had a pretty busy weekend. My sisters went to see him on Saturday and Chris' family saw him on Sunday. He was very alert and looked at everyone's faces. On Sunday he stayed up for over 5 hours straight! He didn't smile the entire time our family was there. But, as soon as everyone was gone and it was just Kevin and me - he gave a huge smile! (His timing is a little off.) He fell asleep before we left on Sunday and when we called back that evening he was still asleep. We had some friends stop by yesterday and they brought Gracie and Kevin some gifts. A cute pair of overall shorts for Kevin for the summer. It's been nice to have visitors - it helps the day go by. But it goes by too fast. Chris and I have people from the hospital staff coming to see him too. And they are checking on Chris and I to see how we are holding up. The woman who works for JHU that deals with people in our kinds of situations came by on Monday. She gave us a packet of papers with some good information in it. I just glanced through it. I don't think it's time to really read it yet and I'm not comfortable enough to read it right now either. She also answered some questions we had about Hospice. The case manager will be working on coordinating that for us. (I don't really want to talk about that anymore...)

When we arrived today, Kevin was having a bad morning. His oxygen saturation levels (SPO2) were pretty low so they had oxygen blowing by his face. He was responding to that at first - then he got worse. They eventually had to place the nasal canula in his nose at a high rate to get him stable again. Chris was scared because we were told in our meeting that Kevin's oxygen levels getting low was one of the signs that he was deteriorating. But Kevin did this about 2 weeks ago too and got better - so I knew he would again. Which he did. His levels came up and he was weaned off the oxygen quickly. When we called at dinnertime he was still asleep and still off oxygen and his level was normal. When they were having trouble with him this morning, the doctor came by and listened to his heart and lungs. Then she squatted on the floor next to me and just stared at Kevin. I looked at her and said, "He's stumped you hasn't he?" And she said that he had. We told the doctors that Kevin just wants to make sure they don't forget about him and he wants to keep them on their toes. I asked if this would be a problem for him coming home and they said it wouldn't. We would get a monitor for his SPO2 and have oxygen on standby in case he needed it. He wouldn't need to be on the SPO2 monitor all of the time - just every once and awhile to make sure he's doing OK.

We called Fairfax INOVA for the results of the Alagilles testing so that could be sent with his other info to the other hospitals. We were told that the result was negative and there was no gene mutation. But that only has a 70 percent accuracy rate. I don't think it really matters at this point. We were told that we will hear back from the other hospitals in about 1 week. Dr. Lau spoke to us today and said that he really hopes that they prove him wrong and they can help Kevin. You can tell he cares about him - but he has a hard exterior.

Kevin's feeds are at 28 cc's per hour and 26 calories. He didn't tolerate 30 cc's per hour very well so they dropped him back. Kevin is 9 pounds 3.5 ounces today. Hopefully his weight will go back up. Dr. Lau stopped in a couple of times to check on him. And the GI doctor was checking on him every 30 minutes or so because he wasn't behaving. We asked her about Kevin's liver failure and how it would affect him as it got worse. She said in adults, as it progresses and the ammonia levels rise, their brains don't function properly. When they talk, they just don't make sense. But they don't know how that works in a baby's case. They also start to not respond as their brain stops functioning. She said that Kevin would get very tired towards the end and that he wouldn't respond to us like usual. I asked about how his SPO2 levels dropping would affect him. We don't want him to have any seizures or lapse into a coma or anything like that. She said it shouldn't happen - but she can't say it won't. It is very hard for Chris and I because we have no idea what to expect. We just don't want him to have any suffering. We had a rough time this weekend. We cried ALOT. I cry at all different times. In the shower, in bed at 2am, even on the dog-gone potty! But Gracie is almost always there to wipe our tears. She helps us out during this time. I have a hard time each morning that I see Kevin and each time I have to leave him. I think about having to lose him and it kills me. All of the things we are going to miss with him. I'm trying to stop thinking about that and concentrate on the time we have with him. It is getting a little easier for Chris and I each day. And we know it is going to get alot harder later on. Chris and I were talking at dinner saying how it is hard for the staff at JHU to see bad people who hurt their children be able to take them home, and then see good parents like us who won't be able to keep their child. Chris said that God knows that we are good parents. So I asked, "Then why doesn't He let us keep Kevin?" I question I will never have the answer to...

Friday, March 26, 2004 10:28 PM

Kevin's legs are a little sore from his cath the other day. We asked the doctor if he could have some Tylenol to help his pain. He said he needed to check with some other physicians because Tylenol isn't good for someone with liver problems. He came back to us and told us he would put Kevin on Oxycodine (something like that), because Tylenol and Motrin are damaging to his liver. So Kevin was comfortable when we left today - actually, he was pretty knocked out - so he should sleep well through the night. We just called to check on him and he was crying in the background. The nurse said she was trying to comfort him, and Chris asked that she just give him his medication. She said she would.

We had our meeting today with the doctors. Unfortunately, they didn't have any good news for us. They have decided that it would be best that they don't intervene with Kevin's care surgically. No heart surgery. No liver transplant. We will work on bringing Kevin home so he can live the rest of his life in comfort. (I can't tell you how hard it is to write this.) They think Kevin can live up to a year due to his heart problem. But having the liver disease makes it less likely. Chris and I have a right to get a second opinion and the hospital is working on that for us. Hopkins is the #1 hospital in the nation, but it is #3 when it comes to Pediatrics. Children's Hospital of Philadelphia and Boston are #1 and #2. Kevin's information will be sent to both hospitals and we should have a response in about 1 week. Chris and I feel that unless someone tells us that there is a 90 percent chance or greater that they can fix Kevin, we will just bring him home. We don't want to put Kevin through anymore pain or discomfort for nothing - he's had enough. We rather have him home to enjoy than having him die on a surgery table. We were told that more than likely, these other 2 hospitals would have the same opinion about his care.

A hard question , but one we had to ask, was how Kevin would pass. They said that more than likely he would die in his sleep. His blood oxygenation levels would just get lower and lower and his heart would stop beating. The liver disease would also make him very sleepy the more it progresses. The hospital will work with us on getting Hospice care for Kevin. And Kevin will be kept comfortable. That is our main priority.

We also asked about a heart transplant. They said it wasn't possible for him because the area that is a problem goes into his lungs and he would also need a lung transplant which he just wouldn't survive. I also asked if he grew if it would change things. Dr. Lau spoke up and said that Kevin probably won't grow. I said, "Even if he lives another 6 months he could be 9 pounds?" And he told me "yes". I asked about his brain development and he said that he would be delayed and probably not grow much mentally either. But he knows how to smile and he knows how to look at us and just melt our hearts. And he recognizes mommy and daddy. And we are grateful for that. We will take care of Kevin and hold him close to us for the rest of his days. He will finally be able to get outside and feel sunshine on his face. And to watch his sister Gracie jump around the living room. We had hoped for a happy ending. We don't know why this has happened. God has some questions to answer when it's my turn to go. But I'll probably be too busy holding my little Kevin again to even think about it. I just can't believe that we are going to lose our child. I never thought this would happen to us. But Chris and I will be strong and cherish the days we have with him. We'll keep updating his website to let everyone know how he's doing and when he will be coming home. We would love for everyone who wishes to meet Kevin to stop in and spend time with him. Either here at home or at the hospital. He loves visitors!

We still need your prayers! Thanks to everyone for being there for Kevin and our family. Our love to everyone!

Karen, Chris and Gracie

Thursday, March 25, 2004 9:11 PM

Kevin had his breathing tube removed early this afternoon. His arms had also been strapped down so he couldn't grab at the tube. So I asked for them to be unsecured so he could reach up to hold his hair since that makes him comfortable. And sure enough - as soon as they were unsecured, he grabbed his hair. Chris and I made him comfortable and talked to him until he went to sleep. Then Chris and I went to grab a bite to eat. Kevin has a very faint pulse in his left ankle. They performed a sonogram on his leg this evening and when we called, the doctor wanted to speak with us. She said it wasn't official, but they thought he had a fistula and his vein attached to his artery in his leg. She still had to speak to other doctors and said she would call us back. We recently got off the phone with her and the doctor who performed the cath, the arterial trauma surgeon and the radiologist had all looked at Kevin. They want his leg left alone. They will be keeping an eye on it, but hope that it fixes itself. They said if anything, we will just have to make sure in Kevin's future that nothing is done to that leg area as far as other caths or surgery due to his fistula. Chris and I felt a little better. But we are still scared about tomorrow. They will have their meeting tomorrow about Kevin at 7am and think it should take a couple of hours. All of the doctors involved with Kevin's care will be there, from anesthesiology to liver to heart - everyone. All of the cardiologists at Johns Hopkins will also be there to see if they have any input. Chris has his CT scan tomorrow at 9:30am and Chris asked that no news is given to me alone. We spoke to Dr. Lau this afternoon about the ND tube and he will be speaking to the GI team about either putting the ND tube deeper into his intestines or removing it and putting an NG tube back in. He said that there is a steadfast rule that the ND tubes work - Kevin has been the only exception to this rule. He's never had this problem before. If they keep the ND tube - I will give them 5 days to show me improvement for I will request that it is removed. I will let them know this the next time I see them. Kevin is down to 9 pounds 4 ounces. Hopefully he will start eating again tomorrow. It's been 2 days. Dr. Lau also said that we may have to make some "tough decisions" tomorrow. He's said that before. He also said in so many words that they may not be able to find a resolution to his problems. We are praying to God that isn't the case. We want them to come to us tomorrow and be confident in saying that they can fix his heart and get him better and on his way to a liver transplant. (I'm going to have to take 3 sleeping pills to get me through the night - 2 just isn't going to cut it for me!) When I spoke to the nurse last night she said that we could call anytime in the night if we were worried about Kevin. I told her that I had already taken some sleeping pills and she shouldn't hear from me. So when I called her after 4am the first thing she said was, "so what happened to those sleeping pills Mrs. McLane?" I told her they wore off around 3am! It didn't help that Gracie was talking in her sleep too. She was getting very upset because she said it was her turn on the slide and she wanted to wear her daddy's brown jacket. She also said she wanted to go to Nina's house (that's her sitter.) I told her she'd see Nina in the morning and then she settled down. But she was asleep the whole time.

I think that's it. Tomorrow is very important in seeing where Kevin's care is going to go from here. We hope it's all good news. Keep your fingers crossed!

Thursday, March 25, 2004 9:01 AM

I know everyone is anxious! Kevin is doing well - but he could be better. He did have some problems with clotting in his artery again. The doctor doing the cath said that when he put it in his leg, the artery was the same size as the cath so it got stuck. He couldn't even get the cath out. He said that the artery spasmed and clamped down. The doctor said he knows it was damaged - there was no way it couldn't be. They left the catheters in his legs for about an hour after the procedure was over because his clotting time was bad and they didn't want him to bleed badly. I'm going to stop and start over from the beginning...

They were supposed to start his cath at 11am. They didn't get to him until after noon. While we were waiting, the GI doctors told us that they think Kevin's throwing up is because the calories are too high in his formula - so they want to change it. Kevin can't eat for a while because of yesterday - but when the time comes - I'm going to have them put in an NG tube and get rid of this one. Because they are WRONG! Kevin was off food since midnight the night before and when I called to check on him this morning at 4:30 - he had thrown up his medication. Medication doesn't have too many calories in it - so the GI doctors are full of crap and I'm done with it. I've spoken to the Patient Advocate and she will help me if needed.

They came to get Kevin and we went with him into the cath lab. It was VERY overwhelming. Huge machines and lots of computers. There was a pink pillow mattress on the bed where they were going to lay Kevin. It had tiny holes in it that pushed through warm air so he wouldn't get cold. They put him on the bed and there were about 4-5 people around him doing things. He cocked his head up and to the side and locked eyes with Chris and I. It was a moment we won't forget. He just kept staring at us and crying. Kevin does cry - but there usually aren't any tears. He had tears that day. It was hard not to break down. I think he was watching us because we were something familiar to him. Then they told us to kiss him goodbye and made us leave. They put a mask over his face and you could hear his muffled cry through that. But he was asleep very shortly after that. They called us when the caths were in (about 1 1/2 hours later), then when they were finished (about 2 more hours later). They told us that he was going to the PICU and he was being kept on the respirator and sedated because they left the caths in his legs. Chris and I had hit the button for the elevator, but by the time it came, Kevin was being wheeled out of the cath lab and we got to ride up the elevator with him. His eyes were very swollen because they needed to give him extra fluid to flush the dye out of his system or it would damage his kidneys. And they were manually pumping air into his lungs. After he went to the PICU, Chris and I had to wait for him to get set up in his room. While we were waiting, the GI team came up to check on him and see how he was doing. Then they came by and spoke to us for a few minutes. Then the social worker came to check on us and the Patient Advocate. Chris and I want to stay in Baltimore for his heart surgery. The Ronal McDonald House isn't convenient if something were to happen to Kevin suddenly. There is a Children's House that is located next to the Hackerman-Patz house that Chris and I stayed at the first time. But the problem is, we aren't allowed to stay there. The Hackerman-Patz house let us stay last time by exception. Only families of adult patients can stay there. The Children's House wouldn't let us stay in the past because you have to be 60 miles or 60 minutes away. We are more than 60 minutes away - but it is only 44 miles and they said that isn't more than 60 minutes. So, the Patient Advocate went to the VP of Hopkins. (Hopkins doesn't run the Children's House, so they don't have any say about the rules - but they make a very large donation every year.) Anyways, the Patient Advocate told us that we were in and we could stay as long as we wanted. We told them the reason we wanted to be close was in case something were to happen when we weren't there and we were called to come in. I told them that I don't want to arrive and have them tell us we were too late. Their rules are so stupid and frustrating and they need to be changed. But we are glad that they got us in. We really appreciate their efforts.

The doctor performing the cath also stopped in to speak with us. He said his shunt IS open, but it isn't really in an ideal place. He defended the heart surgeon who did it and said how hard it is to know where to put a shunt. It is serving a purpose - but a small purpose. He could funtion without it. He said that all of the heart doctors and surgeons and the liver surgeons will meet on Friday morning and go over the results. They still have to decide if surgery is the best thing for Kevin right now. So, we aren't sure we are still on for Tuesday.

When we got back to his room they were getting ready to put a cath in Kevin's penis because he was peeing on his bandages. They got one in, but it was too small and was leaking. So they removed it and were getting ready to put another one in when the cath doctor arrived. He asked what they were doing and he told them not to do it because he was going to remove the bandages and he didn't need it. So they just put a little bag over his parts to collect the pee. He started to wiggle around a little bit so they gave him more medication to knock him out. I told several doctors that I did not want Kevin to gag or cry with the tube in his mouth. (Which he had started to do.) You can see that he's crying, but you can't hear him because it is between his vocal cords. They said they would keep him sedated enough that it wouldn't happen.

When I called early this morning, he was still strapped down to the boards so he couldn't move his legs and he was on the respirator. His Hemaglobin count was low. Chris just called about 20 minutes ago and he is still on the respirator and the count got lower. They are giving him a blood transfusion now. The nurse who had him overnight said he was so cute. She gave him his pacifier and he "went to town on it", even with the breathing tube in. She said that every once and a while she would look at him and he would be looking at her and then fall back to sleep. She said they could find a very faint pulse at his ankle. So we are hoping that the artery isn't clotted, but just in a spasm and that it will eventually release and let blood pass. If it is a clot, they will decide this morning how to go about treating it. They don't want to do anything that will mess with his liver.

Well, it's 9am and we are late getting out of here! We have to run! Thank you for all of your prayers - he has gotten through this, although it's with a few complications. But we know he'll be OK. We'll give him big kisses from everyone!

Our love to all!

Tuesday, March 23, 2004 6:16 PM

Kevin is down to 9 pounds 5 ounces. He keeps getting sick so they keep turning off his feeds for half and hour to an hour at a time. When we left today his was being taken off of formula and switched over to Pedialyte. His feeds will be shut off around midnight tonight because of his cath tomorrow and his stomach needs to be empty for the anesthesia. After I arrived this morning, he threw up. So the nurse paged the doctor. (You know...the one that's like 14 years old...) She came in and said to get him another x-ray (this makes number 8 or so) to make sure the tube is in the correct place. I said, what if it is? She just looked at me. I think she didn't know what to say. I told her that this ND tube hasn't done him any good at all. He's done nothing but lose weight since Friday when it was put in and he's gagging and throwing up MORE than when he was on the NG tube. She said his weight has been going up and down since this was put in (which is a load of crap) and we needed to give it time. Well, times up! As of Thursday when he is back on feeds again - I'm telling them to remove the ND tube. I have the name of the Patient Advocate and I will get her involved if I have to. These people need to realize they made a wrong decision and this isn't working. I'm not going to budge on this one.

Kevin had a couple of visitors today! Frank and Anita from Ohio were in for a check up at the hospital and stopped in for a while. It was very nice to see them. Anita got to hold Kevin for a while. It was a nice visit and we appreciate them coming to meet Kevin.

Chris got to the hospital a couple of hours after me today because he had to do some things for work. He will be going to the hospital with me for the next 2 weeks. We are lucky that they are so understanding with our situation and Chris is able to keep his job through all this. Some companies aren't so understanding. We appreciate them standing by us.

There weren't as many tears for me today as yesterday. When I was crying last night, Gracie saw me and said, "Mommy, are you crying?" I told her I was and she said that she would get me a tissue. She brought me a tissue and when I went to take it from her she said, "No, I do it." And she wiped my tears. She then walked back to the tissue box and put the tissue back in the box. Then as she was walking back towards me she told me she loved me. She always says it back to Chris and I when we tell her we love her, but this was the first time she said it on her own and in the right context. She's so smart. I almost needed another tissue after that. We are going to take her to the hospital this weekend to see Kevin. She has only seen him in person once.

Chris will have his CT scan next week. The transplant coordinator came by this afternoon. She really likes Kevin. She gave him a kiss goodbye when she left and gave Chris and I hugs. She said that Kevin needs 2 weeks to recover from his heart surgery and then he can have his transplant. He is on the list now for a liver. I asked her if she was at the meeting that they had about Kevin. She said she was and I asked her what the overall feeling was about his surgeries. She said that they feel that Kevin is very small and it would be difficult - but can be done. He isn't the smallest that they have worked on. We did find out that the doctor that will be performing his heart surgery isn't due back to JHU until early next week. So, that means the surgeon who said that Kevin will probably have difficulties in his recovery isn't the one doing the operation. Maybe this other surgeon will have a better feeling about him. I think she said his name was Dr. Cameron. But we'll find out more after tomorrow.

Tomorrow is Chris' birthday so it will be a good day (41). We should be home tomorrow by a decent time to be able to update the site and let everyone know how he's doing. If not, it should be done in the morning. Thanks everyone. We know he is in your prayers.

Monday, March 22, 2004 8:57 PM

Kevin is down to 9 pounds 9 ounces. They increased the calories in his formula today to 32 cal (up from 30). Although he has this new ND tube which is supposed to keep him from throwing up, he's been gagging and spitting up. I spoke to the doctors about it to see what the benefit is because I haven't seen one yet, and they said he isn't throwing up like he was before. Yes, he threw up before, but maybe once or twice a day. And that was at 32 cc's per hour. Since he's on the ND tube, he's down to 18 c's per hour and losing weight steadily. How has that benefitted him? But hey, what do I know? I'm just the mother, not the doctor.

Kevin's day went fine today. He is staying up for really long periods of time now. But when he finally drifts off to sleep - he stays asleep for hours. I make sure he is asleep before I leave each day and when I call at 6pm to check on him, he's usually still asleep! I was told that he's been sleeping through the night most of these past nights. We always call again around 10pm. Sometimes he's asleep and other times you can hear him screaming his head off because he lost his pacifier.

One of the cardiologists came in today. I hadn't met him before, but he works with Dr. Spevack. I told him that I didn't know what Kevin's heart surgery entailed and asked him to explain it to me. It was very complicated but I understood. He told me that they will know more after the cath on Wednesday, but they aren't sure how well Kevin will recouperate from this surgery. He said if the results from the cath aren't good, that they won't even perform the surgery and just make him as comfortable as possible until...(then he shrugged his shoulders). I assume he meant until Kevin passes. Kevin's heart troubles are very rare and very complex. They said if he gets through the surgery itself, they aren't sure how well Kevin will get through the recouperation period. The changes they need to make to his heart may make his heart stop after the surgery. He painted a very grim picture for our son. I kept a straight face until he left. Then I lost it. I was pretty much a mess for the rest of the day and still to this point. I cried all over poor little Kevin! I got tears in his ears, on his head, cheeks and one right on his nose. I called Chris at work and told him what the doctor said. I told Chris that he needed to stop working and be with his son until he gets over this next hurdle. Chris and I have to realize the possibility that we may only have Kevin for several more days. I feel like a bad parent because I have been thinking about where I would want my son buried. I just don't know what I will do if Kevin dies. So many things are going through my head. I feel that if he passes, that his suffering will be over and he will be in a better place. I've wondered who would meet him on the other side and take care of him? My grandma Broad, his Grandfather McLane, my grandfather Mancini? Would he stay a baby or keep growing in heaven? If he were to be taken from us I would also be angry that he went through almost 5 months of torture for nothing. We have been so blessed to have Kevin in our lives - he is such an adorable baby. Such a mild mannered little boy. Never complains, hardly ever cries. It is so wonderful to look over at him and see that he is watching you. And he has such a beautiful smile. It makes your heart melt. We just keep praying that God will let us keep him. All I'm asking for God is another 80 years or so! Will You give that to us? Kevin has been so strong so far - we just hope that he keeps that strength and proves these doctors wrong and pulls through this with no problems. This hospital is the best in the nation and the best place for Kevin to be. Chris and I don't have any doubts that these people want Kevin to succeed and thrive and get through this just as much as we do. We know they are trying their best. We pray for them almost as much as we pray for Kevin, that they make the right decisions for our child.

I need to get our little squirt Gracie into bed now. Plus I've got a splitting headached from crying all darn day! It probably won't be too much better for me tomorrow. But the fact that Chris will be there with me will give me strength.

Lots of love to everyone - and thank you for your prayers!

Sunday, March 21, 2004 4:52 PM

Kevin's weekend went OK. Chris and I arrived Saturday morning to find the nurse wheeling Kevin off of the unit and towards the elevators. I said, "Hey, that's ours!". She told us that she was taking him down to x-ray because his new tube hadn't made it's way into his intestines and it had to be forced down manually under live x-ray. I'm glad we arrived when we did so we could be there with him. Chris stayed in the room while it was being done to try to keep him calm. He didn't stay very calm and he screamed the entire time. Kicking and batting his hands at the doctor. The doctor said that Kevin was very strong and normally the kids his size just lay there and let him do it. The doctor also said the tube didn't advance itself because the nurses had taped the tube to his face with no slack and there was no way it could advance. So, because of their stupidity, our son had to be held down for this procedure. We were told that he shouldn't gag or throw up because there won't be anything in his stomach. He was on Pedialyte until that afternoon and then slowly started on formula. Well, today he spit up after gagging for an entire minute (that's a long time to be gagging and not breathing). So, they had to give him another x-ray to make sure the tube is still where it needs to be. Before Chris and I left, we were told that "unformally" it was in place, but the Radiologist still had to verify that. We told the GI doctors that if he keeps gagging and throwing up then we just rather him have this removed and have a regular (smaller) NG tube put back in. She agreed. So we'll see how this goes.

We also met with the catheterization nurse. She went over the entire procedure with us and showed us the catheters. There will be two; one in an artery and one in a vein. They are HUGE! I asked if he can have Tylenol when it's over with because I think those sites will hurt on his legs. She said it wouldn't be a problem. The chances of him having any problems are about 3 percent. That would be clotting, low blood pressure, slow heart rate (in which case he would need to be shocked to get a normal rate back), or death. But since he clotted before, she said the chances would be better than the 3 percent for him to clot again. She said they will check his leg very often afterwards to check for clotting. We hope that it will go smoothly. The procedure will take about 3 hours and he should go in about 11am this coming Wednesday. We can be with Kevin until he is put to sleep, then we have to leave the room. The nurse will call Chris and I when the procedure has started, when it's finished and again when the catheter has been removed and he is ready to leave the room. He will have to go to the PICU for the night because he will need to be observed closely because of his health issues. But he'll do just fine.

His heart surgery date is still March 30th - we haven't heard otherwise. Chris and I need to make arrangements to stay in Baltimore for a while at that time so we can be close to him.

Well, I need to find something to make for dinner! We'll talk to everyone tomorrow!

Friday, March 19, 2004 10:31 PM

Kevin's feeding pump was off when I arrived. I figured he had thrown up and they stopped them for a little while to give him a break. The nurse told me that he was gaggy and they were going to put in an ND tube. He currently has an NG tube which goes into his stomach through his nose. An ND tube would go through his stomach into the top of his intenstines. This was his stomach would be empty and he wouldn't be gaggy or have any acid reflux. They figure he would be more comfortable this way. I didn't see that it was really all that different from an NG so I figured it was OK. The doctor came in and had me sign consent. One for the ND tube itself and one in case the tube had to be forced into place which could rupture his intestines. It was explained to me that the ND tube has weights at the tip of the tube. It is placed into the stomach through the nose and then it is digested into the intestines. Kevin had to lay on his right side most of the day and had 3 x-rays to check to see if it had gotten to it's destination. Each time the x-ray showed that the tube needed to be pushed in further. After 3 x-rays, they stopped. They will give him another x-ray at 6am Saturday morning to check again. Before the tube was inserted, the doctor told me that while they are waiting for it to get to where it needs to be, Kevin couldn't eat. That would be for about 4 hours. Then she told me that he would need an IV in the meantime. I asked her if it could be removed after the ND tube was in place and she said "no". They like to keep it in "just in case". I got upset and I started to cry. I can't express to them enough of how sick I am of him being in pain and uncomfortable. It's been over 4 months and I don't think he's had more than 2-3 consecutive days without some sort of pain. (I'm even crying about it now.) The poor kid needs a break! It is so emotionally draining to see him go through this each day. I actually wanted to leave after she told me what he would be going through today. But I couldn't leave him alone to go through this. I needed to be there to comfort him. It was only minutes after I signed consent that the IV nurse came in. She put the IV in his inner ankle. It looked so painful. He was screaming his head off because it hurt so bad. I had a wet rag to wipe his face and head because he gets so sweaty when he cries like that. He kept looking at me while he was crying. I almost broke down. Finally the IV was done and he was hooked up to fluids. He was very uncomfortable for a while. He finally settled down and then they woke him up to put in the new tube. It was a size larger than the tube he had. It almost takes up his entire nostril. It looks very uncomfortable and doesn't bend well so it doesn't stay taped to his face easily. After they put it in was when I noticed the size of it because I was at the end of his bed when they inserted it. I asked the nurse if they had a smaller one. She said she didn't think so, but she wasn't sure. I asked her to check. She said that they don't take ND tubes out once they are in place. I said that it wasn't in place yet because it wasn't into his intestines yet and for her to please check. She said it would be uncomfortable for him to have a new one inserted. I said it would be more uncomfortable for him to have this huge thing up his nose for the next 30 days and also to keep having it re-taped to his face because it was so unflexible. I know it would be a pain for him to have it changed - but I was looking at the overall picture and his comfortablility. She walked into the hallway and stopped and spoke to the nurse that helped her insert it. The other nurse looked in at me and then closed the door. I assume she was saying that I wanted to tube changed and she didn't agree with me. I honestly feel that you need to say things to my face and not behind my back. I also don't give a crap about what they thought and I wanted a smaller frickin tube for my child! Well, the doctor came in and I asked her. She told me that they don't make a smaller ND tube because of the weights at the tip - it had to be this size. Then she started to ask how the IV went and she was sorry that he had to go through this. I couldn't even look at her because I was getting upset again. She proceeded to tell me, "I wish I could tell you I understand what you are going through, but I can't." I guess that's her way of telling me she doesn't have any children or hasn't had this type of experience. I really wanted to tell her to just leave. She wan't helping me at all by what she was saying. I think she was trying to comfort me in her own way but it wasn't working at all. I think she got the point when I stopped talking to her all together and didn't look at her. So she left. I don't like for people to see me cry. I don't even like to be on the phone when I'm crying. Crying seems to be something I've been doing alot these last few days. I'm getting emotionally drained. I think if I feel like this next week that Chris will go to the hospital for a day or so and I will stay home. He is certainly OK with it. But I would feel guilty for not being there for Kevin. I would also miss him even if it were just one day.

I called at dinnertime and the nurse said he was comfy and had been sleeping since I left. They were also going to start his feeds again at 18 cc's an hour. The fluid would just go into his tummy since the tube wasn't in place yet. I asked the doctor if he would feel hungry since his stomach would be empty while he has the ND tube - and she couldn't answer me. At least she was honest and said that she didn't know. But that certainly doesn't help ease my pain with the situation. Chris and I don't feel that we were involved with the decisions made today and that is something we will bring up next week when the doctors come back in.

Well, I'm exhausted and need to get to bed. Gracie and Chris are asleep on the couch. (Maybe I should leave them there so I can sleep in a bed all by myself for a change!)

Thursday, March 18, 2004 8:45 PM

Kevin was feeling better today. He is still on oxygen to keep his saturation levels at his normal rate. He was in a pretty good mood. Before lunch I put him in his bouncy seat. (He likes to watch The Price Is Right.) He looked at me and started to smile. His legs were kicking and he was grinning from ear to ear for about 10 minutes. He was so adorable! The nurse came over to look at him and the guy from the insurance company who comes each day was there and watching him. The social worker even stopped in to see him. It put a smile on their faces watching him act like that. Every once and awhile we will get a smile from him, but this was the first time he was really jolly like this for such a long time. I'll never forget it. I forgot to take my camera - I'll take it tomorrow just in case he does it again.

He had an echo done today in the clinic bldg. He slept through the entire thing. The woman performing the echo left to get a doctor when she was finished because there were things going on with Kevin's heart that she didn't understand. The doctor came in and explained things to her. I don't know what they were really saying - but as long as they know what they are looking at - I'm fine. I did hear the woman say that she was "baffled". While Kevin and I were waiting for the transport nurse to come back to get us another doctor came in. He is the one that is going to perform his catheterization next week. I told him about the clotting problem he had in the last one and he told me that he could clot again. But he said he will have a lot of Heparin to keep him from clotting before and after the procedure. He said if he clots, it would be noticed by that evening or the next morning and he would be given a medication that breaks up clots. It wasn't Lovenox which he was on before. He said that was just a blood thinner. He would give him something different. But he said the chances of him clotting were low. Well, we know how Kevin is when it comes to low chances...this kid should play the lottery when he gets older because he usually ends up against the odds. (Did I say that right?) But if he does clot - we have confidence that it will be fixed. The doctor did feel his leg and thinks he has a good strong heartbeat in it and shouldn't have problems. (They are using the other leg than last time this was done.) He told me that the anesthesiologist will decide if Kevin will be lightly sedated or totally put to sleep for this procedure. So, I'm not sure when I will find that out. Maybe not until the day of the cath.

I think that's all for today. Oh, there was one more thing. They want Chris to come in to get a CT scan to look at his liver. If it will be the right size, they want to start the "work up" for him. I believe that only consists of blood work.

I'll try to get a picture of Gracie up soon too. Some of you haven't seen her recently (or have never seen her at all). Maybe in the next day or so.

Thanks everyone -

Wednesday, March 17, 2004 7:53 PM

Mom went with me today to see Kevin. He was pretty fussy today. Probably because he had that b**** for a nurse again today. Can you tell I don't like her? Kevin's oxygen saturation levels were running really low today. They had oxygen blowing at his face - but it didn't really help. When the nurse went to lunch, the nurse that was covering for her paged the doctor because it wasn't normal for Kevin. I don't know why the other nurse never did. The doctors came and ordered a chest x-ray and wanted him put on the nasal canula which blew oxygen directly up his nose. I asked the doctors to call me at home when they found out what the problem was. They called at dinner time and said that his x-ray was normal and he was feeling better and resting. They had some blood drawn and the results all came back fine. They decreased his food back to 32 cc's per hour (from 35) because they thought maybe he was getting too much fluid. So they really don't know what the problem is. I just pray that this passes.

Dr. Lau came in today. I hadn't seen him in a couple of weeks. He told me that they had their meeting about Kevin yesterday afternoon and everyone agreed that having the heart surgery first would be best for Kevin. But I wasn't prepared for him to tell me that it would be in 2 weeks. I honestly thought that Kevin would be coming home soon to grow and get bigger for the surgeries that he needs. But Dr. Lau said that they don't think Kevin's liver would last long enough for that. They want it in 2 weeks so the surgeons with the most experience working on the littlest hearts will be able to perform the operation. He also said that Chris should be worked up to see if he can be a candidate for Kevin's liver transplant. Dr. Lau wants his liver transplanted as soon as he recoups from his heart surgery. He thinks that Chris' liver would be too large for Kevin and he said that he thinks it would be best for Chris to be around and not off his feet while Kevin is going through all this. Meaning we should wait for a donor liver. He said that Kevin will be put on the transplant list as a high priority recipient. It could take days to months to get a match for Kevin. But if Chris is a match, he can be waiting as a last resort for Kevin in case his liver fails before a match is found. I was also told by another doctor that the heart surgeon thinks that Kevin's shunt isn't working in his heart. They haven't done any tests to show that, but that's what they think by looking at his recent history. Kevin will need another heart catheterization before the heart surgery so that will happen in the next week. They are aware of his clotting in the past and they will take precautions for that - but there aren't any assurances that it won't happen again. We'll just pray that he does OK. We were told that both of Kevin's surgeries are high risk. But getting his heart corrected first will make the liver transplant less of a high risk - but still high. It's scary. Chris and I are both very scared. I think we are more scared now than before his first heart surgery. All these tears today have made me very tired. This is so mentally draining. It's so damn hard to have your head laying on the bed next to your sick child, trying to comfort him, thinking about what he will be facing soon. All the pain. And he just lays there looking at you adoringly. He's just having to take so much. He needs to be strong and pull through for us. He's shown us his amazing strength so far. We just want his pain to be over with. Chris and I constantly wish we could take it from him. This will all be over with one day and he will be fine. There is some comfort in the fact that he won't remember any of this when he gets older. Problem is - none of us will ever forget it. We'll just thank God each and every day that we were blessed with him. I'll try to remember that when he flushes a toy down the toilet and it overflows or when he wrecks the car!

Please keep him in your prayers. I think we need them more now than ever before. Double time people!

Hugs and Kisses!

Tuesday, March 16, 2004 6:17 PM

Kevin had a pretty good day today. I gave him a bath shortly after I arrived. When I moved him from his usual spot in the crib, I saw a stain of pee. I lifted the blanket and saw that it went down to the next layer, and the next and the next. It was almost dry. I didn't say anything to the nurse because it couldn't have happened on her shift since she had only been there a couple of hours. (Although she should have seen it herself and taken care of it.) I went to the head nurses office and asked her to come to his room. When she did, I showed her the stained blankets and told her it was totally unacceptable for my child or any other child to be laying in urine. I pointed out that is was dry so he had been laying in it for some time. I told her that we can't be there 24 hours a day to take care of Kevin and we rely on the nurses to do it for us. I said that leaving a helpless child to lay in something like this was just disgusting. She apologized and said she would speak to the night nurse and then she proceeded to change his bed. I was so irritated that this happened. It was so obvious that there was a stain there and they just let him lay in it. I'm sure they wouldn't want someone treating their child in that manner.

The meeting that is supposed to happen hasn't occured yet. I was told that the cardiologists couldn't make it Monday and the liver doctors couldn't make it today. I guess it will be sometime this week though.

Kevin is starting to feel heavier to me. I'm not sure if it's my mind playing tricks on me or not - but he feels pretty heavy. I sure hope he keeps up the weight gain and they get his medications up to the correct dosage so he can come home. I know I won't leave him laying in pee all night!

I have to run - I told Gracie I would take her shopping!!

Tuesday, March 16, 2004 7:481 AM

I didn't have a chance to type the update last night. Kevin had a good day yesterday. When I arrived he was awake (and drenched with sweat). The whole back of his shirt was wet. So, I figured I would go ahead and give him his bath early. After his bath I asked the nurse if she had changed his foot bandage yet. She hadn't, so I asked if I could change it because I hadn't seen it in a week or so. His foot wound is practically totally healed! It just looks like one huge, deep scar, but it's healed! It took over 2 months for that to get to the point where it is now. I'll have to take a picture so you can see how it looks now. It's a little tight at his ankle and will have to be streched each day - but it should be fine.

Whenever he would fall asleep I would go over to Destiny's bed. She is the 2 1/2 year old whose mother isn't allowed to come see her. The nurses have a hard time with her - but I think it's partly because they don't have any kids themselves and don't know how to deal with a child that age. (But they should since they all work with children.) She listens pretty good for me. She is a rude little girl, but it's because she doesn't know any better. But already she says please and thank you to me. And she knows not to talk to me with her pacifier in her mouth. I can talk her into eating her lunch too. I told her I would bring her a surprise today - so I made a baggie of candy to take to her. I found out that she has something wrong with her blood - but I'm not sure what.

Oh, I forgot to tell everyone the other day that Kevin has been approved by the insurance company for his liver transplant. They will also pay for a living donor's expenses. Chris and I are still discussing our options with that, since he is a match for blood type.

Well, I need to run - I've got to go see that beautiful baby boy (and Destiny too.) He is also up to 9 pounds 12 ounces! He lost 20 grams last night, but that isn't even an entire ounce. So he's doing well. I just hope that this weight gain isn't water weight and is real fat!

Sunday, March 14, 2004 3:49 PM

Kevin had an OK weekend. He is up to 9 pounds 5 ounces. He didn't gain any weight last night (but he didn't lose any either which is good!) He has been pretty stable all weekend, but Chris and I noticed that his breathing is starting to get pretty rapid again. The doctor came and looked at him and checked his lungs and said he should be OK, but they will keep a close eye on him. We don't want him to get back where he was a week ago and gave to have those Lasix injections in his legs again. He's been sleeping alot the last few days. I figure its OK because he can grow while he's asleep, but I want to have him awake so I can play with him. (I think Maryland just won their basketball game because Chris' shouting is shaking the house!) Anyways...there was a 4 month old baby admitted on Friday night. He's only a few days younger than Kevin and you can see how much Kevin is behind when you look at this other baby. Kevin is probably where a 2 month old is in his physical capabilities. He seems so weak and tired. We just keep imagining how everything will be when he's all fixed up. He has a ways to go, and alot of pain to get through (which I think is the hardest part for Chris and I), but time will pass and he will get the operations he needs and he will get better. He gave me a "look" today. He was frowning his eyebrows at me like I had 3 heads or something. I told him that it was OK for him to give me a look like that now, but if he does it when he's 13 he will get in trouble!

The room Kevin is in has 4 beds in it. Two of the kids that have been admitted and released had burns on them caused in the home enviroment. Another child (the 4 month old) has a skull fracture caused in the home enviroment. There is a little 3 year old whose mother can't come to see her because she isn't allowed, but the poor child keeps asking for her. It's such a shame that some people don't appreciate what they have in their children. I understand accidents happen, but the majority of these people have social services or child protective services involved with their cases because they aren't taking proper care of their children. All of our children are a blessing from God and you need to take care of them and love them. Why can't these stupid people see how lucky they have it and take care of their gift that God has given them? It just makes me crazy to see what they are doing.

There is supposed to be a meeting (maybe tomorrow) with all the people involved in Kevin's care. So, hopefully we will have a plan in place soon.

Take care and thank you for your prayers!

Thursday, March 11, 2004 10:28 PM

Kevin is 4 months old today!!

Kevin's IV infiltrated in his hand this afternoon. He was crying when the medication was going in (through the pump) and I knew something was wrong with him by his cry. I asked the nurse to look at it, and she did. She said it was OK. Well, about 10 minutes later, when the IV finished, she noticed his bandage was wet. She removed the tape and bandage and his little hand was tripled in size. I felt so bad for him. I was angry with myself because I knew something was wrong and he was in pain - but I just let the nurse tell me he was OK. Mothers intuition. I need to push next time. The nurse he had in the morning was a b****. I didn't like her at all and she had a crappy attitude. I was going to speak to her supervisor but she wasn't in today. I'll get a hold of her tomorrow. I felt like knocking her snotty little head off of her shoulders. I can't go in to it now because I'll get mad and won't be able to sleep! Thankfully she left at 11am and we got someone nicer - but unfortunately it was someone who couldn't tell when an IV was failing.

Luckily, he didn't need another IV. The main lady, Dr. Schwartz, said he could come off the antibiotics and she thought it would be fine. I just met Dr. Schwartz today. She is the head of the liver transplant team and the main GI doctor. She was very nice. She wanted to know what I knew about Kevin and I told her. She said that his heart needs to be fixed before the liver transplant because since he has the hole in his heart, his blood isn't oxygenated 100 percent (O2 level). It is around 75-85 percent. If he gets his liver transplant before his heart is fixed, the liver will be damaged and could fail because of the lack of oxygenated blood flowing to it. So, if the hole in his heart is fixed first, the O2 level should increase to close to normal and then the liver transplant could happen. They are setting up a meeting with the GI doctors, cardiologists and surgeons hopefully on Monday to discuss Kevin's care. She said that they prefer to do this type of heart repair when a child is about 6 months old, or about 17 pounds. Kevin has a ways to go before he hits that weight. If his liver doesn't function well enough for him to gain weight, then we may have to try the heart repair at this stage. But lets hope not. She told me that she had a little girl in the same situation as Kevin and they repaired the heart first and then gave her a new liver and she's doing well. She also said to me, "You understand that we are very concerned about Kevin and his condition right now, don't you?" I said that I did. I'm not going to read between the lines on that one.

I asked her if it would be possible for them to set small goals for Kevin. Little goals that we can try to get to while he is in the hospital. I guess mainly with his weight. Chris and I don't know the longterm plans right now - so giving us somethings to look forward to would help I think.

Kevin had to have a little baggie put over his "boy parts" today so they could catch some pee in it for a test of his sodium and potassium levels. When the nurse went to put it on, he peed. On the bed, on himself, on her. (That reminds me, I have pee pee socks in my purse I need to take care of!) I figured since he had just peed that I would give him a bath - of course he peed again just as I was drying him off. So he got the bed wet again. But he still hasn't gotten ME yet!

So, we have no idea when Kevin will be coming home. I think it will be a few more weeks. But I don't think anyone can really tell us that. We'll just keep visiting him every day and giving him lots of love and kisses. We're really good at that.