History

Monday, June 22, 2009 9:47 PM CDT

Good evening! I do not like this new way of signing in to our Caringbridge sites. Too much work. Ughh!

Anyways, we've been keeping a secret and we can mention it now. For the past several months we have been waiting to hear if we won the Extreme Makeover: Home Edition show. Well, yesterday it was announced but we did not win. We have mixed emotions on how ABC exec's picked the family and the whole process on getting on the show. It's a touchy subject and we'll leave it at that.

On the flip side, we have been blessed by the amount of community support and it has been a humbling experience to say the least. It was an honor to be nominated for the show and to be one of five families to be considered for the show. Thank you to all who supported us through out this process.

The kids last day of school is tomorrow. It will be a half of day. Then Heidi has a doctors appointment in Springfield. On Wednesday we have a "Silent Pizza" at a local community college. This is for all people who are deaf in the deaf studies dept. and surrounding community who deal with deaf people. As the name suggests, the gathering is silent so you are "forced" to sign, no talking. Wednesday Katie has her dress rehearsal and Thursday and Friday are her Dance recitals. Heidi has an appointment on Friday in Boston. She sees neurology that day.

I am getting an insulin pump. In fact, it came in the mail today. I don't start poking myself with needles until September but I can play with the pump to see how it works.

We will hopefully be starting our own home modification very soon. We were waiting to hear if we won Extreme Makeover or not. We will be getting a new bedroom and a handicapped accessible bathroom out of the deal. We have the potential of possibly doing more but we'll have to wait and see.

Other than that, getting ready for girl scout camp for Katie and Nick is hopefully going to a local day camp for a week. He needs to get out of the house.

I hope everyone has an enjoyable week. I've joined Facebook so if anyone wants to look me up I'm there. Heidi is on their too. Have a great week.

As always, keep our friends in your prayers. Some are in the hospital and some are trying to get their bodies to work properly. Mito is a horrible disease. Take care!

Paul

Thursday, May 21, 2009 9:07 PM CDT

Good evening! I know it's been while and I'm sorry. It has been crazy here but for good reasons. Is it me or is it harder to sign on now to do the updates on our caringbridge pages? It's not as easy that's for sure.

Well, let's see.....where to begin? Heidi just finished up her finals for her signing class and deaf studies course. She did well in both classes. The college asked her to be on a Deaf Board and she said yes. She said yes because it only meets 3-4 times a year and her fatigue issues shouldn't be too bad (we hope).

On the medical front, Heidi has been having autonomic issues especially with her blood pressure. We believe it is related to her being constipated and is putting pressure on the vagal nerve. Once she, umm, "goes" then her blood pressure would get better. It has been very frustrating for her. Her guts aren't cooperating and is frustrating. Thanks to friends on different list serves, someone gave her a concoction to help relieve herself and it seems to work. Her motility "specialist" hasn't been very helpful and it has been frustrating.

Nicholas is doing well. He got high honors again in middle school. We want his current aide to stay with him when he goes to 6th grade. She has been an asset to Nick and she has helped Nick with learning sign language. She is actually the person that has been interpreting our IEP meetings for Heidi.

Nick and I were in Boston today for a doctors appointment. He saw the physiatrist today. The appointment went well. We are going to get PT at a clinic because the PT at the school didn't do muscle exercises with Nick. We had a prescription from the doctor that said for her to do the exercises but she sent home some pictures on how to do exercises but not physically show us how to do it. So, we will make an appointment for outpatient PT and have a exercise program. It's no big deal. When we first got the pictures I assumed she wanted to show us what she was doing with Nick at school. When we had Nick's IEP meeting I asked her how the exercises were going and she said, "Didn't you get the exercises I sent you?" That kind of answered my question. We also talked about Nick getting a SPIRO vest. A year or 2 ago he had a vest that was form fitting and helped with his posture and he seemed less fatigued when wearing it. It also didn't make him hot which was good considering he has the heat intolerance. It was made in England and when he outgrew it we tried to get it sized. Well, they couldn't do it and insurance wouldn't cover it so he didn't get it. There is a cheaper version of it (SPIRO vest) but this isn't covered by insurance either. It costs in the $100 range. We have the information and are thinking about getting it again.

Katie as usual is doing well too. She has MCAS' tomorrow. She's not looking forward to it but as long as she tries that's what matters to me. I have mixed feelings about these tests but I understand why they are doing them. These tests are depicting whether you graduate from high school or not. I think this is wrong. Another issue I have is that the Commissioner on Education in MA told a group of parents and staff at a meeting when the whole MCAS thing was starting that the teachers would not be teaching to the tests. Guess what.... they are teaching to the tests! Enough venting! Sorry!!!

Katie has her dance recital coming up in June. She's very excited. She has been a helper with the beginner ballet class and she is loving it. We can't wait to see her dancing in all her glory.

As for me, well, I'm still working. Work is keeping me busy. It is stressful and at times I do wish I could leave but with the way the economy is I can't chance it. I have seniority on my floor and if I left I'd be the first one to get laid off (that's if they had to lay off). Next month I am going to a class about insulin pumps. My blood sugars are bad and I may need constant insulin going 24/7. I'm nervous about it but it sounds like a good option. Instead of sticking needles in me 14 times a week I'd be sticking me only 3 times a week. That definitely is a perk. We'll see how it goes.

Yesterday was an important day. It was Heidi and my 14th Wedding Anniversary. As Heidi would say, we are oldliweds. We didn't do anything special though. She wasn't feeling well and things were chaotic. At some point we'll do something. Maybe a movie or dinner. I want us to go out, no kids. Sorry Katie and Nicky! We love you!

Heidi is continuing on getting her business off the ground. She got a mini-grant from a local community college to help her with her business. With the money she got a nice all in one printer. It's nice but as always, we can't figure out how to use the fax machine part of it. Heidi may have a client already and she continues to look stuff up for non-profits and a variety of people over the internet.

Mercury is doing well. He's an incredible dog. Heidi is so blessed to have him. They have been a team and they are doing disability awareness programs in the schools. She's done one in Katie's class, a local preschool, and last week she did one at Nicholas' school. Mercury as usual did a great job. He tried to shut the lights off but the lights in the classroom go horizontally, not vertically so he couldn't shut them off. They were impressed when he picked up a quarter off the floor. The kids were polite and they answered a lot of Heidi's questions. I was impressed with the 2 classes.

Well, I think that's it for now. Please keep all our friends who are sick or are struggling right now in your thoughts and prayers. Until next time......

Paul

Friday, April 3, 2009 8:55 AM CDT

Good morning!

I know it's close to another month of us not writing but in our case I guess no news is good news.

However, we do have good news to share. After 4 years of trying to come up with the funds to start our home modification project, we will be hopefully starting it in a month or so. We've signed a bunch of papers so now things can get rolling along. This will be a start to what our house needs in regards to accessibility but Heidi needs access to her bed and to the bathroom if she's having a really bad day and needs to be in the wheelchair or needs to use the walker. This addition is going into the back yard and will be about a 16x20 addition. We will have another ramp for emergency purposes. We could use even more modifications in the house (more ways to help Heidi in regards to her deafness....IE. alerting devices, better lighting, more space in general)but that will be for another day.

Heidi is trying to go back to work and she wants to start up her own business. Once the addition is put on Katie's room is going to become her "office". We will put her video phone in there and the computer so she can have privacy and respect the HIPAA guidelines and her clients privacy.

My arm is slowly getting better. I want it a lot better since it happened in November of 2008. But I guess my injury takes a while to heal (tennis elbow). My profession doesn't help the healing process but I am seeing a difference and there is less pain. I just want it better now!

Nick and Katie are doing well. Nick is doing well in school and so isn't Katie. They are both growing up so fast. Nick had neuro-psych testing a couple of weeks ago. We haven't heard back from the doctor yet but feels she has learned a lot about how Nick learns. She was so fascinated by Nick.

Katie is working on her AWANA book at church. If she finishes this book she can get an award in May/June. I guess the church is going to have help sessions prior to AWANA but it hasn't happened yet. Once it does Katie will go. She wants an AWARD this year. She's been disappointed the past several years because she hasn't gotten an award or a participation award. In fact, we wanted to move her to our church's AWANA group but she didn't want to leave her friends at this other church (it happens to be 5 minutes away from our house vs. our church which is 25 minutes away from our house). Supposedly the church that my daughter is going to now for AWANA is doing participation awards so we'll see.

Well, on a personal note, my favorite medical drama series has ended. I can't believe I've been following ER for 15 years! I admit I stopped watching for a while once Dr. Greene died on the show but would periodically check in from time to time. I thought last nights show was excellent. It was nice seeing a lot of the old characters again and how various plots/scenes have finalized. For example, medical facility named after Dr. Carters son. You could tell that he was proud of this facility and so weren't his fellow colleages. I also enjoyed seeing Dr. Benton's son all grown up (I believe they said he was 13) and Dr. Greene's daughter, Rachel. It was so fitting to see Rachel at County General and trying to follow in her dad's footsteps. I also thought it was ingenious how in the past, Dr. Greene became a mentor to Dr. Carter and at the end of this episode, Dr. Carter was becoming or was foreshadowing to be a mentor to Rachel. I liked at the end of the show how Dr. Carter was bringing a patient into the ER and looked at Rachel and said something like, "Dr. Greene, are you coming?"

Good bye ER! I have enjoyed watching you. Luckily, I still have "House" to watch. I love that show! The man is a genious but doesn't have the best bed side manor. I also like "Monk" and "Bones".

Please keep our friends who are sick or in the hospital in your thoughts and prayers. Please keep Melissa, Sheridan, Donna, Tim, and Heidi in your prayers. They are all dealing with their own issues so pray that the Lord lifts them up and gets them better soon. Have a great day!

Paul

Tuesday, March 10, 2009 8:53 PM CDT

Good evening!

I can't believe it's March already. What can I say for an update????????? Well, overall things have been going well. In February, Heidi had a new PICC line placed. It went well. She had it done at a different hospital and things went well. She now has a "Power PICC". It's stonger than the last one and should last a longer time.

Kaitlin had her birthday on February 8th. She turned 10! Our baby is getting big! Katie is doing well in school and we had a good IEP meeting. Katie's 4th grade chorus is singing the National Anthem at a Springfield Falcons hockey game this coming Saturday. She is excited! Unfortunately I have to work but she's been practicing.

Nicholas is doing well in school too. He had testing in Boston and we talked about the results today. It was a long day today by the way. We have a different diagnosis for Nick. In regards to him being on the Autism Spectrum he is still Autistic. However, instead of having Aspergers he is now considered to have High Functioning Autism. The change is due to a technicality in the DSM-4. Nick didn't have normal language development (he didn't talk until age 2) so this "disqualifies" him from having Aspergers. Does this new diagnosis change anything? NO. He is still on the Autism Spectrum and he'll continue to get the services he needs. Nick did get some bad news (well to him)from his GI doctor a couple of weeks ago. Nick has gained weight and he actually needs to cut down on calories and exercise more. If only this weight gain happened a few years ago when he needed to gain weight. Any ways, the GI doctor told Nick he has to cut down his computer,tv, and video game time and start exercising. He wants to limit these to just 2 hours a day. Nick didn't talk to him the whole appointment and when we left he had a tantrum right in the lobby of his office. Well, we compromised with Nick and said that yes, only 2 hours of computer a day but he can still watch tv and play video games (within reason). However, his use of computer time doesn't entail
doing homework or writing with Microsoft Works. We are buying a Wii and getting the exercise software. He likes video games and in a tricky way he'll be exercising at the same time. He will be getting an adaptive bike in a week or two. It will have 3 wheels and he'll be able to ride his bike with his sister and hopefully me too. I need to buy a bike though. Nick goes for more neuro-psych testing on March 26th.

As for me.... well things could be a bit better at least health wise. My blood sugars are still up and I've talked with my endocrinologist and the next step for me may be to wear an insulin pump. I am taking a insulin pump class in June and we'll decide then. One perk is that I do 2 "shots" a week versus 14 shots a week. We'll have to see???? My birthday was yesterday and my daughter was cute. She made me a card and one of her lines was, "Happy 40th birthday daddy." She also said something about me being bald and old but that's ok. She is only 10 for peeks sake. I had to work on my birthday so it wasn't a fun birthday to say the least. I brought a cake to work and the nurses felt bad that I brought my own cake to work. I said, "Do you think that this place would bring a cake in? I don't think so." Work has been nuts. They are cutting peoples hours and not giving overtime to people. They cut my floor (3-11)to 2 nurses and 3 aides and from 11-7 they will be cutting down to 1 nurse and 2 aide's. I work on a total care floor with our pediatric population. To prevent "layoffs" they say that all our hours might not be on the same floor and they can choose what shift we do the hours on. If we choose not to do this then we're laid off. Pretty sneaky, ehh! Morale is low and stress is high. The floor is not fun like it was when I first started in Nov. 2005. In my opinion, the care our residents get on my floor is not good and it saddens me to say that. Recreation is the "all important" thing and if we don't send them to recreation then it is neglect. We were told that ADL's can not interfere with recreation. However, on the flip slide, if we send a resident full of p**p then that will be neglect. Excuse the expression, but we are damned if we do and damned if we don't. Ok, enough venting. Ugggh!

Heidi is doing extrememly well. She is taking 2 classes this semester and is doing well in both of them. She is going to quite a few deaf socials and has a friend that has been helping her with her video phone. This phone is soooo cool! Going to the socials has been good for me so I can practice using my signing skills and to meet new people. Heidi went to see the Mito doctor today in Boston. Unfortunately, we were late getting there. Between traffic and leaving a little late this AM we didn't arrive until 9:40 AM and our appt. was for 9 AM. The nurse practitioner said that she could see us at noon so they talked about a bunch of stuff and what they can focus on now. One thing that was mentioned is that Heidi still has a lot of the physical problems from before but they are better managed now. Heidi has not had a line infection in over a year and hasn't been hospitalized either. The doctors office is going to write up a new emergency letter for Heidi and will see if there is a way for Heidi to take her CO-Q10. When she takes it it hurts and it causes cramping and nausea. They are also looking into getting Heidi's and/or Heather's muscle biopsies and send it to Texas (at Baylor I believe). They have better testing for the mito diagnosis. Having the testing done can only help our family. Heidi's mom wants to get tested so if we can find other things from these tests then we can help her mom out so her doctor can test her.

We got good news and that is our fund raising for Mercury is now complete. He is paid in full! We are so happy. Mercury is doing great and we can't stop saying good things about him. He is helping out Heidi so much.

On the home modification front, things are progressing! Yay! We've signed a paper and the powers that be are talking to see when we can get started. We need this addition done yesterday but we can wait. We've only been trying to do this since the summer of 2005.

Well, that's the update for now. Please keep all our friends who are sick or in the hospital in your prayers. Please pray for our friend Cassie as she is finally home from the hospital with a new set of lungs. She is doing great and is even having a fundraiser this Saturday night. I hope it goes well for her. Other than that, good night and we'll talk to you soon.

Paul

Tuesday, January 20, 2009 8:43 PM CST

Good evening!

What a day! It was a historic one to say the least. I was talking with a co-worker of mine the other night and we both were saying how fitting it was that Barack Obama was being sworn in the day after the Martin Luther King Jr. holiday and was being sworn in with the same Bible that Abraham Lincoln used. It's a shame that there is still hatred/racism in this country but at least parts of Martin Luther King's "I Have a Dream" speech is being fulfilled. God bless America!

We are oh so close to finishing our fundraising for the home modification project. A group from New Hampshire that work with families with Mitochondrial Disease has said that they are interested in helping us out and for us to fill out the paperwork. We'll see how much they'll give but this put a big smile on our faces. As the saying goes, "Good things happen to those who wait."

The kids had a nice long weekend. They were off the other day because of the holiday and had today off to. It was teacher professional day. Back to school tomorrow so that will be good.

Katie had her dance recital last Friday. She did a great job! We were worried if this was the right class for her because she' the oldest and tallest in this dance class. However, they utilized Katie perfectly and we were pleased with the final outcome.

What can I say about Nick. Nick is Nick. He loves being on the computer and he wrote an excellent paragraph about Celiac Disease. We are sending it to his PCP and Gastroenterologist in Boston. We are floored by how he writes.

Well, that's it for now. I'll update later. Have a great day.

Paul

Thursday, January 1, 2009 7:11 AM CST

Good Morning and Happy New Year!

We hope that everyone had a wonderful holiday and that 2009 will be a great year healthwise.

Thinking back to 2008 I would say that it was a pretty good year overall for the Coleman household. Instead of 2008 being a year of regression or status quo, it was a year of progression and high hopes for things to come. Nick has been doing well in school (got high honors in middle school) and his IEP and the implementation of it has been excellent. Kaitlin is doing pretty well in school too. She is doing well in dance and is taking up ballet again.

The dance studio has been a big help to us and all we can say is thank you. One of the staff members helped us with Christmas gifts and that helped us out so much. Nick got a cool book about the United States and Kaitlin got neat dance apparel.

Heidi.....wow, what can I say about Heidi? With everything that she has gone through (progression of her loss of hearing, coming back from that near fatal MRSA in her lungs, pneumonia, sepsis, and the nasty bug in her blood in Oct./Nov/Dec. of 2007) Heidi has had the best outlook in life probably than any of us. Heidi is working with Massachusetts Rehabilitation to go back to work. She is working to be a consultant for children and families with special needs. Also, whether it is being an advocate, helping with IEP's, looking things up for public or private resources, speaking engagements about being deaf and having a service dog, and potentially creating an extensive resourse page for the Mitochondrial Disease Action Committee Heidi is determined to go back to work in some fashion. Heidi has also joined and was sworn in as a member of our local Commission on Disability. She has been an asset already (from what I've been told).

As for me, I'm still working as a CNA and trying to control my diabetes. It's not going as well as I hoped and it is frustating because even when I think I'm eating healthy or following a "diet" my blood sugars still go high. The only time they went remotely "normal" was when I did Glycerna for diabetics (I think that was it???)for 3-4 days. I tolerated it for that but I can't live on it. I hurt my arm at work and was on light duty for almost 3 weeks. I ended up with tennis elbow. I'm afraid my tennis career may be over. LOL! I used to play in high school and college but since I've been married I haven't played at all anyways. I didn't have anyone to play with. I'll start back at playing basketball in January. I'll see how I do with my arm then.

The fundraising for the home modification and for Mercury (the service dog) have been going ok. We are half way there for Mercury and we are close to being done with the home modifcation. Heidi has been doing extensive searches for grants and that has been a blessing. I get overwhelmed with all that information and Heidi has been doing the majority of the grunt work. Thank you honey!

We are looking forward to 2009 and hope that Heidi and Nick's health stay stable. The year 2008 wasn't all glorious or without problems/issues but it we plugged through with help from friends, family, our church family, and our faith in our Lord and Savior Jesus Christ. He is awesome! It seems like every year we are scraping by with income and when bills aren't paid, money appeared, if we needed food, food appeared. If we were low on money, anonomous donations appeared. We are so blessed I don't know what to say except thank you.

Please pray for our friend Cassie who is in the hospital in Boston. The Lord knows the details but pray for healing and for her family. Also, pray for all of our Mito friends (and non-Mito friends) who may be sick or in the hospital. May they heal quickly or at least find answers to why they are sick. Alyson, Heather, Bonnie, Sheridon, Tim, and Kris I hope you get better soon! I'm sure I'm missing someone but know that we are thinking and praying for all of you.

I leave you with 2 quotes:

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson

"Be at war with your vices, at peace with your neighbors, and let every new year find you a better man." -Benjamin Franklin

Happy New Year!

Paul, Heidi, Nicholas, and Kaitlin (and our angel, Heather)

P.S. I'll try to get Heidi to put up an updated family photo onto the webpabe. Until next time.......

Friday, December 12, 2008 8:06 PM CST

Good evening!

Well, Heidi is doing well. She is finishing up her sign language class and will be taking her final on Monday. Heidi did really well in the class. She is signing up for another sign languge class and I think a deaf studies course for next semester.

Mercury is doing well although he gave us a little scare last week. I was at work and I got a call from Heidi. Well, Heidi had my daughter, Kaitlin, call me and she helped translate. Anyways, Mercury chewed on a pen and Heidi got a little nervous. She found most of it but didn't see the rest so she assumed Mercury ate the last bit of plastic. He didn't eat the ink just the plastic part of the pen. We took him to the emergency hospital for animals and they pretty much said that they woulldn't do an x-ray because if they did they'd tell us the same thing. Watch for diarrhea and vomiting and if so bring him back in. Mercury was fine and has been acting fine ever sense.

I have been on light duty since November 22, 2008 and I found out today that I can go back to my floor and am off light duty. Thank goodness. I went to work and told them I was off light duty and that I am working on Monday night.

With one ailment out of the way I have another one that I am dealing with. I ended up with a zit or ingrown hair on my left eyebrow. Well, within 4 days it went from a simple pimple to my eye being swollen almost completely shut and soreness heading down my left ear. I am on Bactrim DS and have already noticed a change in my eye. Hopefully, the anitibiotic will relieve my symptoms fairly quickly.

Heidi got good news the other day. She got her video phone put in. She is so excited. She was able to call her mom and both were able to communicate with each other. It was a little emotional to say the least. The video phone is amazing.

Well, I'm going to sign off for now. I'm a little tired tonight. Trying to keep my left eye open is taking a lot of effort. I'm having eye fatigue so I'm getting pretty tired. Have a great day/night.

Paul

Thursday, December 4, 2008 8:21 PM CST

Good evening!

Can you believe that this is our second post within several days? A miracle! LOL

I'm writing today to express some frustration. Yesterday, one of Heidi's PCA's quit. I personally have mixed feelings about it because I did like this girl and we played basketball when the weather was nice. However, her work ethic was deplorable and had an attitude like she didn't care about her job.

For the past several months she went from working 30-35 hours a week with Heidi to cutting down her hours so she could hang blinds for some guy. She said she did this because she got paid on the spot. Now she is working part time for her girl friend in her home day care. She told us she was quitting by the answering machine. Not to our faces but by the answering machine. Here is a copy of what she said on our answering machine:

12/3/08
9:46 AM

Hey Paul. It's (PCA's name). Umm, No, I'm not going to be coming in. Umm, I'm not going to work there anymore. I'm actually not happy working there. I went yesterday to go meet up with Heidi and, um, I didn't get a voice mail untl later on and that they were going to call when they got into town. Umm, and didn't hear back from anybody until 2:30 PM which was an hour later. So, I'm pretty not happy about that. Umm, Regardless if I live down the street or not the fact is I had to wait around that long when it was planned for me to come at 1:30 PM. Umm, and the fact that I got the message when I got there ..........that's when I got the phone call. So, umm, anyways that's how I feel. I do not plan on coming in today. I am not happy working there. So I wish you guys the best.

To explain a few things... Heidi and one of her other PCA's went out shopping and was running late. They called her cell phone at 1 PM and said that Heidi would still pay her if she stayed. The PCA that quit claims her cell phone wasn't working correctly.

Anyways, we had been having problems with this PCA for a while now. She has a fairly new honey and she text's her all the time. She even does this when driving down the highway at 75 mph! When she did grocery shopping she got the wrong items, we've been having communication problems too. She was lying to us, spent more time holding down the couch rather than working, and saying inappropriate things on the phone in front of our kids. Everytime Heidi wrote down a note about policies she would roll down her eyes and act like she was the victim.

The thing that upsets me the most is that she didn't give us a 2 weeks notice and now has caused an inconvenience in our schedules. Since I'm working days, I can't drive Heidi to class. Now we are at a point that we have to find someone to drive Heidi to class. If this PCA stuck with it for 2 weeks Heidi's class would have been over. Ughh!

Oh well, it sounds like Heidi has many interesting a exciting things happening to her in the weeks to come and I know we'll tell everyone all about it. I'll keep the suspense for the time being.

Until next time, be safe and stay healthy!

Tuesday, December 2, 2008 9:14 PM CST

Good evening!

Well, a month has passed since our last update so let me begin by saying Happy belated Thanksgiving! From our family to yours we hope you had a wonderful Thanksgiving!

I am on the "injured reserve" list at work. About a week and a half ago I hurt my arm at work. I was moving a railing to my right in order to lower it when a got a shooting pain that went from my hand to my elbow. My fingertips got numb and it just hurt when I tried to pick things up. I went to the hospital and they weren't exactly sure what was wrong with me. They said I could have a pinched nerve or a muscle/tendon problem. The did x-rays and said they saw spurs in my elbow which shows I could have arthirtis in my elbow but other than that, rest my arm and they wrote a note for me to stay out of work for the next day.

I went to "Occupational Health" two days later and I was diagnosed with "Tennis Elbow". So, I am on light duty and am working on our Alheizmers floor with their recreation deparatment. I am working days which I'm not too happy about because our new Director of Nurses claims that it has to be done on days so people can observe me and to make sure that I don't try to help someone if they fall and hurt my arm more.

I see two flaws in that statement. First of all, the floor I work on, our residents are either in bed or in their wheelchairs. I can't do patient care so I won't be near them to try and stop them from falling. With me being on the alheizmers floor I am walking by patients who are in wheelchairs and can walk. I am more apt to hurt my arm on this floor than on my floor. Secondly, nurses on my floor can watch me do light duty. I can put clothes away, feed our residents, and help out with our recreation department. Our new D.O.N. still won't let me work on my floor.

I found out today that I am going to be on light duty at least for another 10 more days. My arm is getting better each day but it still hurts. My pain went from a 7-8 to a solid 3. As they say, patience is a vertue.

Fundraising has come to a standstill for now. We are still hopeful but things have slowed down a bit. Mercury is great and has been a Godsend for Heidi.

We had a nice Thanksgiving with some of Heidi's relatives and we came back this weekend from visiting my parents on Cape Cod. We had a nice time.

Heidi is doing well with her sign language class. I am so proud of her. She is signing up for more classes for the spring.

Well, it's late so I'm going to get going now. Talk to you soon. Please pray for all our mito families. God knows who they are and knows all the details but pray for them anyways.

Have a great evening! Talk to you soon.

Paul

Wednesday, November 5, 2008 9:09 AM CST

Good morning!

Well history was made last night and a change is a brewin' for the United States of America. Whether you voted for or against Senator Obama let's support him and make this a better country. The question that was raised in my mind is who would do a better job with this change? Senator Obama or Senator McCain? Well, last night the country spoke and chose Senator Obama. I do have to say that I enjoyed both speeches and Senator McCain did a gracious concession speech. He tried to control his supporters (who booed when he mentioned Senator Obama's name) and wanted to get them to support Senator Obama. Our country needs to unite and support our president in trying to make it a better place.

It reminds me of when people ask us to support our troops and when we disagree with the war in Iraq they say we are unpatriotic. For me, I am against the war and felt we invaded the wrong country. With that being said, I totally support our troops and have the utmost respect for our men and women in the armed services. They have a duty and need to follow the orders of the President.

Enough about the election. Things have been pretty stable around here. We went to Mercury's graduation last month and it was a lot of fun. Heidi was the guest speaker at the 10 year anniversary of the Prison Pup Program and she did a nice job. In fact, people came up to her and asked her for her speech.

We are getting closer to getting our home modification done. We still need to raise $6,000 or so in order to get started but we are almost there. Heidi has been doing a great job looking up grants and trying to get things organized from that end. I give her credit because I get too overwhelmed and my head gets all crazy trying to keep everything organized. I feel bad because I haven't helped as much as I know Heidi would have liked. So Heidi, I do apologize!!!!! xoxo

On that side note, we are getting closer slowly but surely to getting this home modification done. We are also half way there with paying the funds for Mercury. The fundrasing continues.

Please keep all of our friends in your thoughts and prayers who are sick or in the hospital. Also, pray for those who are home and are healthy that they continue to stay healthy.

Nick was fitted for a tricycle through a special program in Springfield, MA. Nick has balance issues when riding a two wheeler and this will help him keep his balance and let him ride with his other friends.

Other than that, we are holding on here. We could use your prayers for our finances. We are hurting but we are working on it. Heidi is trying to go back to work but until then we are living off of 2 part time job checks and the SSDI and the kids SSI checks. We don't qualify for many state programs because we "make too much money". Ughh!

Until next time, have a great day and God bless.

Paul

Sunday, October 19, 2008 10:53 PM CDT

Well, it's almost midnight as I'm writing this and my dear Red Sox have lost Game 7 in the championship series with the Rays. We put up a good fight but we lost 3-1. Tonight the Red Sox didn't have a lot of hitting and their pitching was ok for the first 3-4 innings and then they were blah...
Even though I am a Red Sox fan I do wish the Tampa Bay Rays the best of luck against the Phillies. Go Rays!!!!

Anyhoot, everything is status quo here. Heidi is doing well in her sign language class and she is working very hard in finding grants so we can start our home modification project and to pay for her service dog. Kaitlin is doing ok in school but is growing up too fast for her daddy. She is acting older by wanting to wear necklaces and is beginning to have her own fashion sense. Furthermore, she tells me tonight that she is going to make me bald or gray, whichever comes first. She is wearing training bras now and she is teasing me with it. My poor 9 year old is growing up! Make it stop! Nicholas is doing well in school. His belly is distended and looks about 7 months pregnant. He is finally going to see a psychiatrist at the end of the month to help regulate his medicines and to get insight on his migraines. He is playing trumpet and as far as we know he is doing ok with that. As for me, I just finished a 4 week (one day a week) sign language course and I'll be taking a signing class with song on October 30th. My signing is slowly improving and I survived the first silent pizza gathering at our local community college. It's sponsored by the deaf studies program and people who are deaf or are taking up courses in the deaf studies program can come for pizza. The hitch is that there is no talking. You have to sign. I did ok for my first time. In regards to my blood sugars I'm sad to say they aren't doing as well as I had hoped. I need to stop picking and exercise more. I stopped running for a while because we are having sewer lines put in our streets and the road have been all dug up. The majority is almost done so I can start again.

I think I will stop here for now. I'm tired and am not sure what to say. I need to go to bed. Take care everyone and I hope everyone is doing well healthwise.

Until next time....

Paul

Sunday, September 21, 2008 8:10 PM CDT

Good evening!

I hope everyone had a nice weekend. It was a hectic one for us as we had Heidi's Motorcycle Ride to raise money for Mercury.

The motorcycle ride actually went well. Bethany, a friend from church, organized the ride and she was hoping for 50 riders. It actually only had 15 bikes and a total of 21-23 people. We had a silent auction and delicious food. We had hot dogs and hamburgers and various macaroni salads. They also had cookies and brownies and soda and water. We did raise $1,000 towards our portion for Mercury. We are close to be raising about $5,000 so far for Mercury and we just started the fundraising so we are doing pretty good. We will march forward and continue our fundraising endeavors so we can meet our $9,500.

Nick had a hard day yesterday. Katie and Nick were arguing over the computer. When Katie asked for help Nick would help her by doing it for her and Katie didn't want that. Heidi took Mercury out and I went out to help pick up the, um,#2. When we came back in, they continued to fight and Katie and Nick were throwing rocks inside the house. I told them that they could't play computer the rest of the night. Needless to say, Nick went bonkers and was screaming on the top of his lungs. He calmed down after about a half and hour. We need help when he has these "attacks"/tamtrums. Nick is on a wait list to see the local psychiatrist but we'll see if they can move him along.

Nick did say the funniest/cutest thing on Saturday though when he was arguing with Katie. One time when he was screaming he went up to us and said, "Once Katie was able to walk and talk she has been annoying me."! It was priceless to say the least. Nevertheless, we still didn't let him play the computer.

Well, that's it for now. I'll update again midweek. Heidi has an appointment on Tuesday and Nick has an eye doctor appointmetn on Tuesday. Nick also sees GI on Thursday so maybe I'll update on Thursday night. TTFN!

Paul

Tuesday, September 16, 2008 8:23 PM CDT

Good evening!

Well, it's been awhile but overall things are going well. Today has been a sad day because it is the three year anniversary of our precious little girl, Heather, going to be with our Lord and Savior Jesus Christ. We didn't visit her gravesite today but we will on the 25th. This is the day that she was born.

Well, today it is official and we will be having another musician in the family. We asked Nick if he wanted to join band and he said yes. He is sticking to a family favorite and is playing the trumpet. Yay!!! In fact, I still had my trumpet when I was his age and he is using it now. It sure beats paying rental fees for the instrument. He officially starts lessons tomorrow.

Heidi and Mercury have been a great team since coming home at the end of August. In fact, they have their first speaking engagement on Thursday. Heidi and Mercury will be going to Kaitlin's school and doing a 20 minute talk about service dogs and showing what Mercury can do. Katie is very excited about this.

Heidi passed the test in order for her and Mercury to be a team and for Mercury to be a service dog. It was a fun, exciting, stressful, and mentally exhausting 2 weeks. In fact, I had to come up a day early because Heidi was having autonomic issues and her blood sugars were dropping. She was freaking out her PCA and the dog trainer so they wanted me to stay there the rest of the time. I had to call out of work in order for me to go. All in all, it was well worth it and was glad to be with Heidi the last 5 days or so of her stay there.

We are looking forward to the dog graduation in October. It sounds like it is going to be a lot of fun. It is somewhere near Fitchburg I believe.

School is going well for the kids so far. Nick is in middle school and Katie is still at the elementary school. They both seem to be enjoying it very much.

I'm going to stop here because I'm falling asleep typing this. If I think of more stuff I'll type it in a couple of days or so.

Have a great evening and please keep our friends who are sick and/or in the hospital. Thank you.

Paul

Monday, August 18, 2008 9:59 PM CDT

Hello,

I know it's been a while since our last post but we've actually been busy. Heidi has been doing a great job in looking up grants online and we just mailed out about 35 or so letters to various organizations/funds from across the country. I mailed out about 8-10 letters to local places also. All of the grants are to try and help us get funds for the addition that we are trying to put onto our house. Some of the grant money may have gone for the service dog too.

Speaking of the service dog, Heidi met Mercury today. She arrived in Princeton, MA yesterday but didn't meet Mercury until 1 PM today. She is in training with two other people.
Heidi will have the dog stay overnight on Wednesday night and will come home this weekend. Then back to Princeton on early Monday AM.

Heidi is doing a "special blog" on her experience with getting and living with a service dog. She has a neat slant on why she is doing this blog/webpage. If you would like to visit it, go to www.carepages.com Then type in mercurycoleman (all small letters and no spaces). From what Heidi said, you'll need to register but once you do that you can peruse the sight.

Other than that, I'm a pseudo-bachelor for two weeks. I am still working and the kids will visit my parents next week sometime.

We got a new fridge today. Ours died. We had a leak in it and the bulb hasn't worked for years. And by the way, yes I replaced the bulb!

Speaking of dying, the kids Beta fish died. Katie's has been dead for a while but Nick's just died the other night. We bought both of them new fish and we got their homes all set up today. Unfortunately, we had to buy Katie two fish because when I was getting Katie's fish bowl ready she OVERFED the fish. When we tried to transfer the fish he swam for 5 minutes and then died. We told her it was because it ate itself to death because she overfed it but also it could be that it was nervous and the stress from changing bowls caused it do die too. Poor Katie. Kaitlin has a new fish and is doing much better. We are organizing a schedule for feeding and changing the water. Hopefully, she won't be so anxious and gung-ho in doing things for herself. She didn't read the directions.

Other than that, Heidi is having fun and I'm attempting to clean the house. Ha Ha Ha. We'll update a little later, maybe this weekend. Talk to everyone soon.

Paul

Monday, July 21, 2008 9:13 PM CDT

Good evening!

I wanted to say we got a phone call today from one of the trainers at NEADS. Heidi will be going to their facility to do the 2 week training in mid-August. They will be sending out a letter within the next couple of days.

Heidi was very excited by the phone call because we found out when she was doing the training, that the dog is a male black lab ( I though it was yello lab), and the dog's name is Mercury.

So back to fundraising and by the end of August Heidi will have her service dog.

As always, please keep our friends in your thoughts and prayers. All is well here for now. Katie will be going to Girl Scout camp in 2 weeks. She is very excited. Nick is doing well in summer school and he's playing computer at home. Same old same old with me. Oh, I'm doing a "Biggest Loser" contest at work. I've lost 2.5 pounds so far and I have begun to jog. Well, more like walking and a little jogging but at least it's a start. I did my goal but I found out my goal was a bit longer than I thought it was. My walk/jog ended up to be 4.4 miles. I did it in 65 minutes. I know, I'm not setting any records (Yet!) but the other day I felt really good to begin with but got wiped out on my way back. I blame the heat and the humidity. It was near 90 and very humid. Plus I was very dry and thirsty. That didn't help.

Heidi is doing well. We are still trying to get answers from her GI/nutrition doctor in Boston to see what he wants to do with her feeds/fluids. We'll keep everyone posted. Until next time.

Paul

Friday, July 18, 2008 7:34 PM CDT

Good evening! I have a short update for everyone. Heidi had several doctor appointments this week and Nick had a couple too.

Heidi had her crown prep done on Monday. That went fine. She goes again in August to put in the crown.

Nick saw the local cardiologist and from what I heard that went fine. She said that what we were doing with him is exactly what we should be doing with him and not to change anything. This is in regards to his autonomic stuff.

On Tuesday, Heidi went to Boston to have neuropsychological testing done. Her mito doctor wanted her to do the test so he can get a baseline on her. I hear she did well on the tests and the doctor that performed the tests was impressed that she was able to focus long enough to finish the tests. It was a long day but Heidi did it. I guess Heidi will get results once she goes back to NEMC for a doctor appointment.

On Thursday we had all the contractors come over to see the plan for our addition. Many people came over so hopefully we'll get a lot of quotes. The "bidding" will be on the 31st of July and we'll know then who has the best quote and how much more money we need to start the addition.

After this, we headed up to Boston to see Nick's GI doctor. As always, I enjoy talking to him. He said that Nick has gained weight and we told him how the neurologist started him on Periactin for his migraines. The medicine is working for his migraines but he is gaining weight like crazy. Nick is finally 80 pounds! However, he has a buddha belly and looks 6 months pregnant. Ha Ha! He suggested calling his neurolgist to change his med to liquid so it is easier to titrate. We did that today so hopefully his migraines will stay under control and he won't gain as much weight. We'll have to watch his weight though still. It was ironic how we've been battling the insurance to get Pediasure covered for Nick and now that he has gained weight he technically doesn't need it. We are still going to anyways because it helped him in school but we will add milk to it to lower some of the calories in it. We'll see the GI in 3 months.

Other than that, we are having our local newspaper come to the house on Wednesday (23rd) and we are doing an article on Heidi and how she's getting a service dog. We want to mention the NEADS program and put out information about how to donate to Heidi's dog.

Speaking of this, Heidi's picture with a dog (not her dog) is up on the NEADS website. So if you would like to donate online go to www.neads.org and look up Heidi Martin-Coleman in the online donation section. We are very excited about this.

It has been stressful trying to fundraise for the addition and for the service dog but it is a good stress. In fact, I have been talking to someone from our church who is trying to help us fundraise and is trying to do a motorcycle ride for Heidi and her dog. We will meet her on Saturday the 26th to discuss things. Our church has been very good to our family. We have been very blessed.

I guess that is it for now. If I think of anything else I'll wait a couple of days and do another update but until then, take it easy and God bless.

Paul

Tuesday, July 8, 2008 9:42 AM CDT

Good morning!

It's another hot one in Western MA! Very humid today so the AC is cranking! Nick and Katie are at camp. We had some confusion in regards to Nick's camp and his bus transportation.

When we had his last meeting at school we told them that he would not be at summer school the first week because he was going to Bible camp. They told us to call the bus company to let them know that he wasn't coming.

Long story short, Nick decided to just to go summer school so we never called the bus company. Yesterday was his first day of summer school and the bus never showed up. I drove him to school when they told me they weren't expecting him this week because they thought we were going on vacation. Everything is fixed but a little chaotic yesterday. Nick seemed to have a good first day but he had some heat issues later on in the evening. He spiked a fever 100.5 or so and his pulse was high. For such a smart kid, you'd expect his body to know when he's supposed to sweat, but it doesn't. Once we cooled him down he was fine.

Katie did go to Bible camp and she had a good first day. She got to color, fill out a paper to get points, and has some Bible verses to memorize. She did one last night but has two more to do. I believe they have many pieces of papers with Bible verses to memorize but I'll be happy as long as Katie tries and even if she learns only one verse this summer, hey, it's one more than me. Ha Ha!

We had a great time on the Cape the July 4th weekend. We went down the 3rd after Nick's appointment with the Mito Doctor. We went swimming on July 4th and we had a barbecue at my parents. We had to come back on Saturday because I had to work but we had fun. Mom, I will send you the pictures I haven't forgotten. Your pictures came out great! The kids were well behaved and they even saw live fireworks at my parents house. They were from a distance but I figure it was free and we didn't have to fight traffic or parking to see them. Win win situation I think.

Now to Nick's appointment. Overall, it was a good appointment. He has gained weight and height and overall looks pretty good. Our main concerns for him are his autonomic issues especially his heat intolerance and high pulses. He can have a pulse in the 180's if he's hot and it doesn't go below 100 even when he's sound asleep. He also gets mottled skin when he stays in one position and his blood pressure is all over the place when they check it. Nick is seeing a local doctor about his autonomic issues next week. Dr. Korson (mito doctor) said that Nick needs to drink more (he only drinks about 30 oz of water a day and should be drinking closer to 60 oz of water a day) and we can increase his Creatine to 1 tsp two times a day. Also, cut his calories by 100 because he gained more weight in relation to his height. Imagine that, this boy who was below the growth charts a few years ago now needs to eat less! They did a bunch of lab work and a urine test and all have been fine. His lactate is high (not unusual for him) and we are waiting for his carnitine.

Heidi just had tons of labe done and they showed that she is malnourished. Maybe this explaines why her hair is falling out and her skin is "sloughing off". Her lipids and protein are very low and she is low on many other minerals too, some of the most concerning ones are in the undetectable range. Last month the nutrition doctor in Boston said that her PCP needed to order the IV fluids but now with all these changes and the nutrition doctor in Boston saying that we should add the vitamins, elements, and lipids to the IV fluids, Heidi feels that he needs to call her PCP and tell him what to put in the fluids or better yet order and monitor them himself. Heidi has been very frustrated with the communication between her doctors and she doesn't want to go back on IV lipids or TPN unless her nutrition doctor comes up with a plan to help Heidi become better nourished. She understands that the blood tests showed serious nutrition problems that need to be addressed quickly because of her mito and fatty acid oxidation problems, but last time she went on TPN "for the meantime" she was on it for 2 1/2 years.

On the addition front, people are coming to check out the house and the designs next Wednesday and on the 31st they will have their "bidding war". We should know then how much the project will be and how much more we need to ask people to try and help us out.

Other than that, nothing else is new. I hope everyone stays cool and we'll update a little later on.

Paul

Saturday, June 28, 2008 8:34 PM CDT

Good evening!

We have exciting news to share with everyone. Last night while I was at work Heidi got a phone call. The phone call was from NEADS (the place that trains service dogs). Well, they told her they found a dog for her that they think will work out for Heidi's needs. They said they may have the dog trained by the end of .........JULY 2008!

We were shocked and excited all at the same time. We were told it may take 1-2 years to get a dog and it's only been (2-3 months?). Heidi thinks they may have told her the name but she can't remember it if they did. We do know it is a lab.

The one thing we have to focus on now (other than money for the addition and money for our new sewer system) is to raise money for the service dog. At least this is a good stress to be tackling.

We need to try and come up with $9,000 or $9500 (I forget) to help pay for the dog. If anyone is interested in helping Heidi to obtain this goal I have information for you.

If you would like to send us a check, email us and we'll give you our address. If you like to do donations on-line go to www.neads.org. On the left side under the "Canines for combat veterans" picture click on "Give Online Now". When you get to Program Area click on the down scroll button and find "Heidi Martin-Coleman" and click on it. Then, continue filling out the rest of the form. Any donations will go directly to Heidi's dog.

Any help would be appreciated! We didn't focus on fundraising for the dog yet because we have been focusing on the addition and we assumed that we'd be dealing with a dog in another year from now. Surprise!

We'll update again after the weekend. Nick sees the mitochondrial specialist on Thursday so we'll update after that. By the way, Nick did excellent at camp this week. The lady that followed him loved him and would like to work with him again. He had one bad day in regards to dealing with the heat but other than that he had a great week.

We got papers for Nick for summer school and that is from July 7-August 7. Nick will miss the first week because he is going to Bible camp for that week. Talk to you all soon. Wish us luck with the finances! Thank you!

Monday, June 23, 2008 9:20 PM CDT

Good evening!

First of all, sorry for not updating earlier and thank you to Donna for writing me and kicking me in the butt (well, figuratively not literally)about not updating sooner. Donna has a way with words. LOL

I'll start with an update on Nick. He saw the neurologist and the endocrinologist locally on May 29th. Both appointments went very well. We described how Nick's migraines were looking and he said that they sound like "Confusional Migraines". This is a rare type of Migraine. It totally explains his seizure-like activities when he was younger and how he acts when he has a migraine now. In fact, if he were to have an EEG during one of these rare type migraines, it would look like he's having a seizure. The doctor put Nick on Periactin along with his other meds he's been taking to help prevent the Migraines from happening and so far so good.

The endocrinologist appointment went well too. Since this doctor put Nick on the thyroid medication there has been improvement in his weight and height. At first, I thought they were going to stop the medicine because his labs were normal now. But, we decided to keep Nick on the thyroid medication until he hits 18 and then decide then to take him off the thyroid medication or not.

On June 8th we went to the Boston Harbor Walk. We may have been nuts in going (humid and mid to upper 90's) but we enjoyed ourselves anyways. We kind of learned a few things on this day. The main thing we learned that even though we prepared Nick for the heat (cooling vest and tons of fluids)he still got "mushy" on us. He woke up fine but half way to Boston he didnt' look right. Both Heidi and NIck stayed in the tent and Katie and I started the walk. Katie pooped out after 10 minutes of starting the walk so we ended up turning around and stayed in the tent. It was a long day but we had fun. We saw one Mito family that we knew (Hi Erin!) and met another one. We talked about the cooling vests. There are two different types, one that works by a damp vest pulling away body heat and the kind Nick has with special cool pack inserts that aren't as cold as the ice packs that you put in a cooler, but safe against the skin.

Heidi saw the Nephrologists on June 12th. Heidi's Blood Pressure is going from high to normal to low and after doing a bunch of labwork and urine tests it isn't renal or cardiac. So, we are back to square one and assuming that it is all autonomic. The doctor wants Heidi to keep her potassium up. It is low so she is on IV fluids 24 hours a day and they increased her potassium in the fluids.

Heidi is hoping to get a port in her upper arm or in her chest. She really wants to go in the water/pool. Heidi has lost a lot of weight but she has been fairly stable for the past several weeks. Can you believe that she fits into our daughters clothes now. Yup, she fits into our 9 year olds clothes. For clarification, our daugther is one of the tallest girls in the third grade and is over 100 pounds.

Speaking of our daughter, she had her dance recital last week. She did a great job! We were so proud of her. Great job Katie! Kaitlin has improved so much from last year. She kept up with the older girls and she really strutted her stuff.

Nick is actually going to a day camp this week. Two important things happened in order to get him to go to this camp. For one thing, it was free for us and second, he has support while at camp. A local autism group got a grant so they are letting 9-10 autistic children go to camp for free. They are staffing this week with many aides from this autism group so he'll get one-on-one attention. He should have fun. At least we'll get internet access this week. Nick loves the computer.

Heidi did see the Mito specialist in Boston on May 30th. It was a good appointment and a frustrating appointent all at the same time. Heidi really emphasized how communication has been bad within the metabolic office and to all her doctors in Boston. When discussing her labs they said they haven't seen them but all he labs say they were faxed to them (and yes it had the right fax # on it). Also, when she told them about her weight they said, "Well did you talk to GI about it?" Heidi said, "Yes". She's been talking to GI every single week and they are all in the same hospital. Communication has been bad.

Heidi came up with a plan and it seems to be working. For now on, Heidi is doing an update on herself every 2 weeks (I believe) and emailing it to all her doctors. Ironically, once she did this the GI doctor decided to do a bunch of lab work so now he is focusing on her feeding intolerance and her weight loss. I think Heidi is on to something now. It is sad how the doctors want Heidi to have all her doctors in one hospital so they can have better communication but they can't even communicate with each other within 10 feet of each other. Ughh!

I almost forgot, Nick got an award at his 4th grade graduation. He got an award for Excellence in Writing. We were pleasantly surprised that he got an award. I mean, we know he's a great writer but surprised he got an award. Nick definitely had the best school year this year. Hopefully, things will continue as he heads off to the middle school next year. Middle school in our town is grades 5-8.

As for me, I'm busy like usual. I want to try and see the open house at our local community college for the nursing program there. I know there is one at the beginning of July sometime. I"m still on the "powerful" insulin but have been a little bad with my diet. I need to work on that more.

Plans for the addition is moving slowly but surely. We are hoping to put a bid out hopefully the first or second week of July and this way we'll know how much more money we need to try and come up with.

One damper to raising money for the addition is that our town has decided that our section needs to switch from septic to sewer. It is going to cost us approximately $3,000 to do everything. We pay $1,250 to hook up to the sewer and an additional $1,500 to empty the septic, and put tubing underground to the street so they can hook it up. It is money that we don't have but needs to be done. We may need to take out a loan through one of the local banks. It is 0% financing for the first year and 4% the second year. I figure, we can start the loan and once taxes come in we'll pay it off then. I wish we had more money. We have until June of 2010 to hook up.

Another frustrating thing is that we don't qualify for fuel assistance yet again. I don't mind living paycheck to paycheck but with fuel/gas as high as it is we don't have the "extra" cash to be forking over to all this other stuff. The thing that puts us over for fuel assistance is the SSI/SSDI income. Unfortunately, it counts as earned income so we are over the amount for a family of 4 by about $4,000. This is about the amount the kids get a year for the SSI. It is so frustrating it isn't funny.

Well, that's it for now. I'll update again around the Fourth of July weekend. Stay cool and keep all of our friends who are sick at home or in the hospital in your thoughts and prayers. Until next time.....

Paul

Thursday, May 22, 2008 9:29 AM CDT

I just wanted to do a quick update to let everyone know how we are.

The results came back from the nephrologist and all test results came back normal for something renal causing her BP to be high. So it isn't kidney related but autonomic. Currently, Heidi's blood pressure goes high and low now and has been orthostatic. When Heidi bends over she says she feels like she is going to faint and that is when we notice her BP is low (80/30). Heidi said that her results were on the low side which may be related to Addison's Disease but the doctor didn't say that she had it or not. Heidi is trying to balance between having high and low blood pressure by using meds and IV fluids. It's a little tricky but nothing that really interferes with Heidi's activity. The blood sugars are a bit trickier to manage and she is bottoming out more frequently. The octreotide did a great job keeping her Blood sugars in a normal range so now she needs to keep the D 50 handy at all times. Heidi is a little ticked off that she can't take things orally to keep her blood sugar up because she loves to go crazy with sweets right now! ;) Heidi is still losing weight but was finally able to get the formula that she tolerated before (a long story, can you say insurance! Ughhhh!) but hopefully this will get obsorbed and put a little meat back on her bones.

On May 20th, Katie had a recorder recital at school. The third grade class did a great job and we were very proud of Katie. She loved to practice the recorder and it definitely showed. Maybe we'll have another musician in the family???

Nick was home the past few days with a "toddler disease". He had croup. He was barking like a seal. We saw the pediatrician and she gave him some steroids to help with the croup. It is working because his O2 Sats are up and his pulse is down. The doctor commented how Nick has grown and we can thank the thyroid medication for that. In fact, Nick is in a size 8 now. We are going to have to buy him new clothes. He finally outgrew clothes that he has been wearing since preschool (well, I'm joking but not really)! He has been wearing these clothes for the past 3-4 years at least and he's in fourth grade now.

Well, Tuesday night (20th) was a special night. Heidi and I celebrated our 13th Wedding Anniversary. We went out to dinner at the Cracker Barrel restaurant. We have one in Holyoke, MA. The food was excellent and was mostly quiet until a bus load of middle school or high school kids came in and sat around us. It got too loud so Heidi shut her ears off and turned off her hearing aid. Lucky her. I guess there are some advantages to being deaf. In a way it was good because it forced me to use my sign language skills to communicate with her. I'm spoiled because Heidi reads lips really well so when we talk she can understand me most of the time and I don't need to sign. If she doesn't understand me then I'll sign or finger spell. I've been fortunate to be married to my best friend and we have three great kids. Even though one of our babies is no longer with us and we have endured so much as a family, our love is stronger than ever. I may be older and balder due to the stress, but I wouldn't change it for the world. I love my wife and family that much! Since I'll get balder, anyone know of any good discounts on hats or sunscreen? Ha Ha!

Next week Nick has appointments with neurology and endocrinology and Heidi is seeing the metabolic doctor and possibly the muscle doctor in Boston. We'll update more after next week when Heidi and Nick see their respective doctors. Have a great day and God bless.

Monday, May 12, 2008 7:50 AM CDT

Hello everyone! I'm sorry it has been a while since we updated to this journal entry so it may be a bit tedious but is full of information.

Before I update you on our busy schedule I want to take a moment to say that a friend of ours passed away last Saturday. Eventhough we never met face to face, we considered her our friend. Pam C. was a sweet young woman with a very kind heart. She was very supportive to our family when Heather passed away and she was my IM buddy when I got home from work. We would like to send our condolences to Pam's family and friends in North Carolina. Pam we will miss you!

ok, now to the update. On March 27, 2008 Heidi went to a conference to find resources for children with special needs in Holyoke, MA. I wanted to go but I had a CPR training at work. I dropped her off and she even had a sign language interpreter there. She said that she enjoyed it and even spoke to people about possibly getting a job!

On April 2, 2008 Heidi saw a pediatric cardiologist to talk about her recent high blood pressures. This doctor feels that it is autonomic and it was left like that.

On April 9th we went to an event for an early childhood program. It was a dinner for parents who had children go through their program. We ate at a chinese restaurant and it was only for parents. NO KIDS! It was nice. We spoke to other parents and caught up with the director of the program. It was a lot of fun.

On April 10th Nick saw his GI doctor in Boston. He is growing both height and weight wise and we thought his reflux was getting better. Nick says that stuff still comes up. The doctor thinks that Nick may be doing something called rumenation. Heidi doesn't think so because it is done by children who have mental retardation and cognitive delays. She thinks he is swallowing stuff that is coming back up because of his gastroparesis but the doctor doesn't think so because his ph probe didn't show much coming up. The debate continues. lol

I went to my Mens Advance at church from April 11-12. I had a lot of fun. We were at a retreat in the Bershires and it was beautiful. It was on a lake and we had a view of the mountains. The food was excellent and I got to play basketball.

Heidi spoke to a neuropsychologist on April 14th. She is going to get tested in July. Her mito doctor wants to get a baseline on her and she talked to her about the psyciatrist who claimed that Heidi's anxiety didn't permit her to get weaned off the ventilator while in Boston in November 2007. We found out later that when they took out the endotracheal tube that her throat closed right up. Maybe this is why she couldn't get weaned off the ventilator rather than her anxiety?

We had an excellent appointment on April 15th. We went to NEADS near Worcester, MA which is a place that deals with service dogs. Heidi inquired about a dog that could do some hearing stuff and some service dog stuff and they said that there was no such animal. The dogs have different personalities so to speak. A hearing dog is active/hyper and don't need commands to help you. A service dog needs to be told what to do and is more layed back. So, long story short, Heidi's needs at this point is more service dog related rather than hearing dog related. So, they are looking for the right match for Heidi and once they do they will call us. We have information on fundraising and Heidi's information will be put on their website. So, if you feel moved to donate in Heidi getting a service dog, you can look on the NEADS website and donate online. Their website is www.neads.org. Find Heidi Martin Coleman on the donate online section and your contribution will go to Heidi's service dog. Our goal is to raise $9,500. It costs a total of $20,000 to train a dog.

The Coleman family is helping out society by participating in a Tourette Study. We went to Massachusetts General Hospital on April 25th and we did some psychological testing and some blood work. The kids refused to do blood work then but we have the tubes so we can do it locally. The study is looking for a certain gene that a family may have that would predispose someone of getting Tourettes, ADD/adhd, and OCD. We have tons of questionairs to fill out but once we do it we'll get $100 for participating.

We brought Katie to a nutritionist appointment on April 30th. She's gained a lot of weight so we wanted to see how we can help her. The nutritionist noticed that the weight gain started happening about 2 years ago. Kaitlin is a stress eater like her old man and this corresponds with Heather passing away and Heidi getting sick. We need to watch what she eats and limit certain foods. She agreed that Katie will most likely be a tall girl when she grows up.

On May 5, Heidi saw a local nephrologist. Her local PCP wanted to check more into her high blood pressure because it happened so quickly. This doctor thinks that Heidi's high BP may be an endocrine issue. He did a bunch of tests so we will see what the results say.

I've been dealing with one main demon and that is my diabetes. I was on a long acting insulin before I went to bed and my blood sugars haven't really gone down. I went on a 3 day diet which consisted of very limited carbs. I had one boost drink for diabetic in the AM and another at lunch and then I could eat meat and salad for dinner and that was it. I was hungry but I did it so my blood sugars could get lower. Well, it worked a little bit but not enough. So, I'm on a different insulin now which has more punch but I use less of it. It is Humulin R U500. It's like 5 times the dose of the regular insulin. So, instead of taking 70 units of Humilin 100 I'm taking 14 units of this stuff before breakfast and 14 units before supper. My morning BS are lower but I'm being stupid and over compensating by eating more so my blood sugars don't go low while I'm on the stuff. I need to keep my "diabetic diet" going and see what happens. I guess I'm a little nervous because Heidi's BS goes low and see how it affects her. I guess I don't want to feel that way so I'm eating a little bit more so it doesn't happen to me. What can I say, I'm a nervous nelly.

I saw my PCP and we talked about my echocardigram that I had done last month. In general it was normal but I have borderline enlarged left ventrical. It may be because my triglycerides are always high. They've been high since college. So, he wants me to try fish oil. He suggests Fisol and taking 2 pills 2 times a day. I need to recheck my A1C and do a urine test. Then in 2 months I do more labwork to check for my cholesterol.

Lastly, on top of her blood pressure issues, Heidi's motility is not working very well. She continues to lose weight and is lower than the minimum weight that her doctors want her to be. Heidi's lower intestines are not working and she is full of poop. She's uncomfortable and not happy. We've tried all the typical approaches to get her unconstipated but she doesn't have hard stool, it's all soft/loose. It just her intestines aren't pushing it through. Heidi is frustrated with her doctors because they are doing the "wait and see" approach instead of looking for compassionate use of motility meds that are off the market. The metabolic team wants to put Heidi on Lipids 2-3 times a week in addition to the IV fluids that she's already on. Heidi isn't happy and she doesn't think that this is the answer.

Other than this, this has been our life since March 20th. I will try and be better at updating more frequently. As always, thank you for visiting and don't forget to sign the guestbook. Keep all of our Mito and Caringbridge friends in your thoughts and prayers and until next time, have a great day and Happy Belated Mothers Day to all the moms out there.

Thursday, March 20, 2008 8:53 PM CDT

Good evening!

I wanted to write a quick update. Heidi in general has been doing very well. The main issues right now is that she is having formula issues and fluid issues. Nothing major but she is still losing weight and gets dehydrated a little bit. Her blood pressure has been high and her local PCP has started her on blood pressure pills. Once she got more fluids and started on the blood pressure pills her BP is back to normal.

Heidi just started a new formula that has free amino acids. We'll see how that goes. She continues to take Octreotide for her motility. However, the real benefit so far is that her blood sugars are more stable being on it.

We've had many meetings the past several weeks. Heidi saw the Massachusetts Rehabilitation Commission and they said she qualifies the program. I think we're waiting to hear from the lady again but I guess they'll help Heidi get a job and maybe help pay for her to take some classes. Also, if our van dies they will pay for a new/used handicapped accessible van. Yay!

The next two meetings Heidi was fortunate to have a sign language interpreter. We went to a Pain Management Seminar with free massages. Ahhh! It felt really good. Heidi said that it was nice to go to a meeting where there was more than 1-2 people and understand the conversation.

Today we had Nicholas'IEP meeting and it went well. We all have noticed Nick's anxiety level going up since January or so. We are trying to work on a behavioral management plan to help him at school and perhaps carry it over at home. Also, the middle school will set up a time for us to meet the nurse over there and maybe talk to the school principal. We will have one more meeting as a team in June to make sure he's all set for middle school.

I had an interesting evening at work the other night. It was around 10:30 PM and I was the last CNA to finish my residents on my side (this is nothing new for me). The other CNA's were charting in another room by the nurses station. Well, I heard a feeding pump in one of the rooms at the end of the hallway and I went to check it out. Well, one of the residents pulled her feeding tube and pulled the tubing off the pump. I fixed it and happened to look down and noticed her mask that covers her Trach came off and it was on the floor. As I said her name, I looked at her and her Trach was out of her stoma and was dangling on her trach ties. I said, "Oh crap!" I told the nurses what happened and they came down and luckily one of the nurses got it back in. It took a while but once the girl did a BIG cough it slid in. Luckily her O2 sats were good throughout the whole "ordeal". Thank goodness for little miracles. This situation definitely topped my night off.

I think that is it for now. Heidi doesn't have any major doctor appointments coming up until the beginning of April. I plan on going to a Men's Retreat in Pittsfield, MA with our church. It has some interesting topics and I still don't know which ones I'll choose. If I had to choose today it would be: "What children need from their dads" and "Tips on being spiritual leaders in the home, church, and life". The last time I tried to go to a retreat Heidi ate a calzone and got really sick from it (blocked her g-tube). I've already told her no eating calzones the night before the retreat. She laughed so that was good.

Until next time, take care and God bless.

Paul

Sunday, March 9, 2008 11:37 AM CDT

Good afternoon!

I hope everyone is set for daylight savings time. I'm sorry we haven't updated since the beginning of February but as the saying goes, "No news is good news"!

I'm not sure where to begin for this update but I'll start by saying that today is my birthday! My parents came up from the Cape yesterday and we went out for lunch. Then we playing two games of rummy. My mom won the first game and my dad won the second game. The birthday boy came in last and second. My mom and dad got me a nice spring jacket and she made a birthday cake.

On February 21,2008 we went to a Deaf Social. I have to say, Heidi did an excellent job communicating and she seemed to fit right in. I signed a little bit and tried to follow Heidi's conversations. The kids seemed to have fun and we want to go to another deaf social. I was very proud of Heidi!

On February 25th, Heidi went to the pain clinic. We learned something that day that may be useful for those who are reading this journal. We learned that Heidi was put on the wrong pain medications and that she shouldn't have been put on Dilaudid or the Fentanyl patch for muscle pain. Apparently, these medicines can increase lactic acid in the body and make it worse. She also found out that her body isn't breaking down the Methadone the right way. There seems to be an absorption or metabolic problem going on. She is still taking the Methadone because it appears to be working even though the tests show otherwise.

On February 26th, Heidi saw the physiatrist in Boston and Nick saw the pulmonologist and had PFT's done. We talked to Heidi's doctor about getting different AFO's (foot braces). He wants to increase one of her medicines before he gets her new AFO's. Nick saw the pulmonologist and his appointment went fine. His lung muscles appear stronger than a year ago but when doing the test some things looked wrong because Nick was getting very distracted. Nick's lungs sounded fine so he wants us to schedule Nick for another appointment in one years time.

On February 29th, we saw a new neurologist for Heidi. Her metabolism doctors wanted her to see him so they can get a new baseline for her. He wants Heidi's MRI or CT scans from Mass General to go over to him so he can look at them. He wants to check to see if Heidi has any spinal cord injuries. One of her tests came back odd which may be caused by a pinched nerve or something so he wants to do the MRI if Heidi hasn't had one before.

We had Kaitlin's IEP on March 6, 2008. Overall it went fine but it seems as though I passed on some crappy genes to my daughter. While growing up I was found to be learning disabled. To be more specific, they said I had a reading comprehension problem. Well, Kaitlin's teachers are saying that she is reading appropriately but not comprehending what she's reading. She is also having problems with math word problems and having problems with word retrieval. These are the same issues that I have except my word retrieval issues Heidi likes to say, "You did a Paulism". Long story but it's cute how she says it.

Heidi has been on fluids for a month now. She is still losing weight but not as quickly as before. We had to change her feeds due to her motility issues. She's tolerating 50 cc's of formula through the J-tube right now. I hope she can increase/tolerate the feeds at some point.

The clothes that Heidi bought a month ago are getting big on her now. Heidi shrunk a little bit more. I guess her doctors will let her get down to 130 lbs. before they panic.

Heidi still can't maintain her oxygen stats. One suggestion the metabolic doctors said was maybe Heidi can use hyperberic oxygen therapy. Divers use this machine to help them with the "bends".

Other than that, Heidi is talking with the people from the Mass Rehab Commission on Tuesday. Heidi is hoping to try and work some (maybe 20 hours a month) and the Mass Rehab Commission can help with this.

In April, Heidi is having an interview with NEADS. This is a service dog program in MA where we can get service dogs, hearing dogs, etc. Heidi wants to get a hearing dog. The interview will be a tour of the facility, help the staff understand Heidi and her lifestyle, and to discuss what will be necessary to have a successful working relationship with an assistance dog. We'll obviously let people know how this interview turns out.

Other than that, that is all from here. I hope everyone is starting to dethaw from the snow. It's slowly going away in Western MA. Please pray for all of our friends who are sick or in the hospital. Please pray for our dear friend Cassie. The Lord knows all the details but pray for guidance and knowledge for her doctors and patience and guidance for her family. Thank you. Have a great day.

Thursday, February 7, 2008 9:04 PM CST

Good evening!

Well, Nick has a PCA now and she has been a blessing for us (and for him). She has been helping us out with Nick in the AM to help in getting him ready for school. This includes but not limited to getting him dressed, making sure he eats, brushes his teeth, school stuff is already, homework done (this has been a biggy), and coats and mittens on.

I have to admit it, since Stephanie (Nick's PCA)started with Nick our mornings have been a lot less stressful. Now I can focus on Heidi and Kaitlin in the AM and a few more hairs can stay on my head thanks to less stress.

We had a busy day on Monday (the 4th). It was a Boston day and we had 3 appointments set up. Fortunately or unfortunately, Heidi set a record in seeing 4 doctors that day and she tried for a fifth but I vetoed that one because she was falling asleep with the fourth doctor.

We first saw the nutrition doctor. We need to find a way to keep Heidi hydrated and to prevent her from losing so much weight. Since her guts didn't like playing the "increase the feed game", her intestines slowed down a bit thus becoming more dehydrated and losing weight. We are trying to increase feeds slowly and he put her back on Vivonex Plus. The majority of her doctors don't want her to have a line for anything but until her feeds increase she had a mid-line placed for extra fluids.

Second doctor we saw was GI. This was added on as we were driving on the Mass Pike. This appointment was about finding a way that her guts could work a little bit better. He suggested Reglan, Domperadone, and we told him about Zelnorm (I hope that was right) being off the market to help with motility. Heidi tried Reglan and had a neurological reaction to it and Domperadone she didn't find that it worked. Zelnorm did work but was taken off the market. We told him how Octriotide helped in the past and he was hesitant at first. However, since we are limited with the drugs that she can take he agreed to try it.

Next appointment was with ENT. Heidi was telling him about ringing in her ears and how when she leaned to her right she would get dizzy and what not. He said that is common and it has something to do with the brain realizing that one side is unbalanced and once it realizes the inbalance then the dizziness and ringing should stop. He encouraged Heidi once again about cochlear implants. He is positive that Heidi will "hear" again but Heidi still isn't sure. She feels and I agree with her that there is too many obstacles that could go wrong that she doesn't want to try it.

Last but not least we saw the metabolic doctor. This appointment was primarily for Heidi to update her system by system what was going on with her since being discharged from rehab. Many things were discussed but the doctor said how well Heidi looked despite what a long day that she had. She was amazed at how quickly she got better because when she saw Heidi in November she didn't think she would make it. Heidi fought the odds and the doctor said that most patients that they see and are that sick like Heidi, they don't make it.

The attempt to contact the 5th doctor was to ask him if she should start back on the Arixtra. Rehab stopped it and Heidi wanted to know if she should start it again to prevent the blood clots. Heidi has a painful area behind her knee that she wanted him to look at but are going back to Boston several times this month so we can make another appointment to see him.

Heidi's mid-line was leaking from her site and they had to pull it. They don't feel that there was a hole in the line but that the area where the tube went in opened some more for some reason and was leaking out. Today we went to the local hospital and they placed a PICC line in. This should last longer and hopefully her feeds will be stonger and the rate higher so she can maintain being hydrated.

Katie is very excited. Tomorrow is her birthday. She is going to be 9! I can't believe it. My baby is growing up. We will celebrate it with her friends on Saturday.

Heidi ordered all of us our Medic Alert bracelets. Nick got his today so the rest of ours should be coming.

Work has been crazy and I haven't been feeling well. I have a cold or something in that family and my sinus' are blocked. They don't hurt when you press on my face but when I lean over I almost fall over. I have no temperature but I'm coughing a little, I have a runny nose (which is painful by the way), and I have sores in my mouth. Not fun, they hurt! At work we have had only 3 CNA's on at night on a total care floor. We have about 10 residents each and we are going non stop. They really need to staff us better.

Well, I think I wrote a book so I am going to stop. Please pray for our friend Donna as she isn't feeling well. Please pray for a quick recovery and that the rest of her family can stay healthy. I believe she said that she has aspiration pneumonia. Get better soon Donna!

Until next time!

Paul

Saturday, January 26, 2008 9:35 PM CST

Good evening!

I hope everyone is doing well and are staying warm. Heidi's been a little dehydrated and her potassium has been low so she's been on supplemental potassium for a week or so. Now she has diarrhea so one of her doctors told her to stop the potassium. I guess it is known to cause diarrhea. If Heidi still has loose bowels then she needs to go to the ER and get tanked up with IV fluids. Other than this, Heidi has been doing really well. She is walking with a walker and sometimes she walks without one too.

Heidi bought new clothes since she has lost 18 pounds. She looks really good! We got a lot of her clothes at Sears. She got new jeans and pretty Lands End shirts.

Today we went and got the memory tile made for the local hospital. Heidi and Kaitlin really got into it and Nick made a cat for it. The tile was 6"x6" so we couldn't fit a lot on. It will be put up on the wall in approximately 2 months. What did we put on it? Well, you'll need to picture it. On the top it had Heather Coleman and just underneath it it had her date of birth and date of death. Right next to that we put a flower. In the middle, we put Elmo holding a heart. On the heart we put another heart with the words love. To the left of Elmo Nick put his cat and to the right of Elmo's foot we made an Angel. Mentally we were ready to do this and in some way I think it has helped in some chapter in our lives with closure. I don't think closure is the right word because we will never forget our baby girl but in a way it may help with the grief cycle or something to that extent. Thank you once again to Kim, Sue, Abby, and Gwen for your thoughtful gift.

We have gotten a little frustrated with Nick's school in regards to Latex exposure. We got a call on Thursday saying they had to get Nick Benadryl for hives. Apparently, a girl in his class lost her retainer and she went looking in the trash. The nurse had latex gloves in her office so the girl got those before she went looking. After looking in the trash she took the gloves off and went on her merry way. From what I was told, she touched Nick's shoulder and the nurse said that he had hives. The nurse reminded the girl to wash her hands after wearing the gloves but it was too late.

Heidi and I are going to write a letter to the nurse and the district nurse and the principal to discuss our concerns. I was talking to a friend of ours at our local pharmacy whose son has allergies too. The school that he goes to has everything non-latex. Why can't Nick's school be the same way? Everytime he has an exposure to it it interrupts his day and is given Benadryl which makes him loopy or sleepy. Sometimes they tell us to bring him home because he sleeps too long. This isn't fair to Nick and at this point I feel it needs to be addressed. Don't get me wrong, I love the nurse at his school and she has been very supportive to our family. However, this is the 4-5 time that he has had an allergic reaction to some latex product this year and Nick doesn't even have to touch it in order to get a rash or hives.

Katie participated in a dance/cheerleading clinic a week ago and she performed at our high school boys basketball game on Thursday night. She did such a great job. Congratulations Katie! Kaitlin also had her recital a week or so ago and she did great in that too. Now she is looking forward to her birthday in a couple of weeks and is starting to look at..gulp....Girl Scout Camp. She even saw a overnight for Dad and daugther. This is at the end of May/beginning of June. HELP!

Other than that, we are hanging in there. Nick is starting to get PCA hours now. They are starting on Monday AM and the person is helping him with getting dressed, making sure his teeth are brushed, he ate, school supplies/homework are all set, and what not. We are excited with this news. We love Nick but he can be frustrating at times. He gets absentminded and distracted very easily.

Well, I'm going to get going now. I'll update again when something happens around here. We go back to Boston on the 4th of February. Heidi has (I believe)3 appointments that day. Until next time, good night and stay WARM!

Paul

Saturday, January 12, 2008 10:34 PM CST

Good evening!

As the saying goes, "No news is good news." There hasn't been too much excitement here at the Coleman household. 2008 has been good to us so far. However, Heidi has made 2 ER visits within a week already. Not because she has been sick but because her J-tube keeps getting blocked. The doctor was able to fit a bigger foley in so now she has a 16 french catheter in for a j-tube. She hasn't had any problems with that.

Heidi had her hearing tested and her right ear is a lot worse and has no usable hearing in that ear. However, her left ear got a little better since getting home from rehab and the thought is that she had fluid in her ear and went away after getting all that antibiotics from being in the hospital.

Heidi continues to do well and is walking around with her walker rather than driving her power chair in the house. She overdoes it sometimes but overall it is so nice seeing her walk around the house. Heidi and Nick have appointments in Boston on Monday. Heidi sees the physiatrist and Nick sees the people who fitted him for his AFO.

I am working Monday and Tuesday and off until Saturday. I was so happy earlier in the week. A dear friend of ours (who went to UMASS with Heidi and I) sent us a beautiful picture of her family. I hadn't spoken to her in several years and she didn't know about Heather passing. I wrote her a note saying hi and telling her about Heather.

Speaking of Heather, Heidi and I are ready to have a tile done in her name and it will be permenantly displayed at Children's Hospital in Springfield, MA. It is called "Hands and Hearts Family Tile" and it was purchased by our dear friends who unfortunately had to move to Boston. The tile is in memory of Heather and all the hearts that she touched in live (and there was a lot). I contacted the artist who is in charge of the project and we are meeting in a couple of weeks to work on the tile. We have no idea what we want on it other than something with Elmo on it and maybe a guitar. Heather LOVED Elmo and she began music therapy and played the guitar with her feet. The music therapist once said that she is the only one that he allowed to play his guitar with their feet.

The New England Patriots won tonight so I am happy. They play either the Colts or the Chargers next week. Any one of these teams will give the Pats a run for their money. Both almost beat the Patriots in the regular season so I don't know which team I'd rather see them play. No matte who they play, I hope the Patriots make it back to the Superbowl again!

Well, I'm going to get going now. I hear that we may be getting 6-10 inches of snow from 12 AM Sunday night to 2 PM Monday afternoon. I'm going to need to leave for work early on Monday. I hope they plow! Talk to everyone soon.

There are several people who are sick at home or sick at the hospital or in rehab so for those please pray for quick recoveries so they can get home to their families and/or loved ones.

Paul

Thursday, January 3, 2008 10:18 AM CST

First of all, I would like to say Happy New Year to all of our family and friends. Another year has passed and 2008 has begun.

For the Coleman household, I am viewing the beginning of the new year as a new beginning for other things too. For example, Heidi's health. She has continued to impress family, friends, and doctors on how well she is doing. She is moving around more with her walker and hasn't really used her wheelchair in the house. She is still tolerating 60 cc's an hour for 24 hours of enteral feeds and is awake more than she is asleep. It is almost as if I traded in a "old" Heidi and brought home a newer version from the rehabilitation hospital.

For me, I want to try and be better at keeping to a diet and getting my blood sugars under control. I need to be around to help with my family and I've been mostly concentrating on helping with the kids and Heidi and neglecting me. This will be one of my top goals for 2008.

The kids are doing great. They had a great Christmas and enjoyed their time with their aunts and uncles. The kids started back to school this week but boy has it been cold. This AM at 7 AM it was 0 degrees. I guess the high for today is 14.

Katie has been practicing the recorder and she is quite good. Heidi and I have been impressed. We are thinking of looking for Heidi's old clarinet that has been sitting upstairs in our attic and letting Katie try it. She has also become quite good at the board game "Connect 4". She's been beating everyone at that game. Katie is also enjoying her dance lessons. It's nice seeing her so happy.

Nick is Nick. What can I say? He's still playing with the computer. He's been looking up author's biographies of all the books that he's read and is into local history. Both kids have been watching the High School Musical 2 DVD.
We started Nick on thyroid medication and it seems as if it is working in regards to his concentration. He's completing his sentences so that is good. His facial tics are still bad and we don't want to increase his immipramine. It will snow him. We are considering having Nick be seen by a psychiatrist to help coordinate his medicine.

Other than that, it is status quo here in the Coleman household. I will update again later on maybe this weekend. Thank you to all of you for being part of our lives over the past several years. May 2008 be a little bit less exciting (health wise) for everyone. God bless you all and may you all have a good 2008. Happy New Year!

Tuesday, December 25, 2007 9:17 PM CST

Merry Christmas!

I hope that everyone had a nice Christmas this year. This was a special one because Heidi was able to be home. Everyone commented on how good Heidi looked and what a comparison from last year to this year.

Heidi was amazing today. She was up quite a bit and even made popcorn balls. She and her sister (from NY) made them.

The kids enjoyed all of Santa's gifts and gifts from the family. Katie got a beautiful American Girl doll that looks just like her. Nick got several remote control cars that he has played with all day. They both got some nice clothes and some board games. Overall they had a nice Christmas.

I need to head to Boston on Thursday to pick up Nick's new AFO's. Katie will be seeing the eye doctor on Thursday too for an appointment.

Heidi needs to see a Retinal Specialist on Friday. She saw her optometrist who noticed a lesion in her central part of her right eye. Heidi had told her that she doesn't have central vision in her right eye and didn't notice it until she went to rehab. She suggested her to see an ophthomologist (which she did) and he said that there is a scar with fluid around it. He wanted her to see a retinal specialist. So this Friday at 8 AM (Yay me!) we are heading to Springfield to see this doctor. We are trying to see whether Heidi's eye sight can come back or not.

Well, that's all the dirt for now. Please pray for our friend Chris who is sick right now. Pray that his stomach and pain subside and that he feels better.

Paul

Friday, December 14, 2007 8:32 PM CST

Good evening!

Well, we had our first official day with Heidi being home and it was great. Heidi had a great day! I, on the other hand, wasn't feeling too well. My throat was sore and had a hard time talking. It was very raspy and as Heidi said, it was sultry too. Everytime I coughed it felt like a knife wanted to get out of my throat.

I had to do several errands today too. One big one was to go back to the rehab hospital because I had to pick up one of her scipts for one of her medications. It was written wrong so they had to fix it. I got it and everything is fine now.

We also got our supplies from the infusion company that we have to use now. We miss Nutrishare so much! The order is messed up. They sent us the wrong feeding bag size and sent us LATEX gloves. Ughh!

The kids had a good day. Nick has been a little emotional lately and not totally sure why. Katie and Heidi made some banana bread and it was very good. Katie did a lot of the work and it was excellent. Great job Katie! Katie also wanted to decorate the tree so she helped do that too.

Heidi read through the previous journal entries and she doesn't remember a lot of it. She asked me a lot of questions and I think I filled her in fairly well. We are just amazed how quickly she got sick and how quick her rehab time was. We are very impressed. Heidi has noticed a few changes that she wants to address her doctors. Not sure if anything can be done per say but at least let them know of these "changes".

Last night and tonight was kind of odd for me because I was so used to getting Heidi's TPN and medicines ready. Now, she's off TPN and tolerating feeds and some of her medicines have changed. So now, I have to learn different time changes for her meds. I was proud of Heidi because she actually had a lot of stamina today and was up for a good portion of the day. She actually got the majority of her medicines ready today which was nice to see. I am just so happy that she's home now and doing so well.

Heidi should be getting evaluated for PT and OT sometimes next week. They are putting in for VNA nursing for 1-2 times a week and social work 2-3 times a month. We'll see if insurance will pay for it.

Until next time take care and God bless.

Paul

Thursday, December 13, 2007 7:42 AM CST

Good morning!

Great news! Heidi is coming home........TODAY! It's a Christmas miracle but she's coming home and we are so excited.

Heidi is still off TPN and is tolerating feeds still. Hopefully we'll have everything all set for her to be discharged. I mean in regards to oxygen delivery and supplies delivered and what not.

I'll update more later but want to say thank you for all your thoughts and prayers. We appreciated them. Thank you!

Until next time! TTFN!

Paul

Friday, December 7, 2007 10:10 AM CST

Good morning!

For once I have positive stuff to update everyone on. Heidi is doing really well in rehab and the doctor said that if she continues to do well then she may be able to go home by Christmas.

One of the miracles that has happened over this past month is that Heidi is tolerating feeds. Don't ask me how but she is. It's a mystery and I asked my sons GI doctor yesterday how this could be possible. He said that there are some rare cases where patients with mito get off TPN and tolerate feeds again. He admits that he doesn't have a lot of adult patients but has had some children who have went from being on TPN to going back on feeds. If a stress is strong enough then this may happen. He also said that she's tolerating feeds now because the pain she got from feeds before aren't there and are at a different state right now. He called this pain visceral hypersensitivity. Since Heidi has been sedated and very relaxed this hypersensitivity has a new baseline now so he feels that 60 cc's an hour for 24 hours could be her new baseline. We will see.

The GI doctor also said that with this current hospitalization/ rehab admission it was probably a good thing that it happened. He's not happy that Heidi got really sick but that it gave her body an opportunity to get used to feeds again and get off TPN.

Heidi is able to "talk" now. They changed over the trach and it has a plug so she can talk. She is doing a great job with it. She should be able to go home without the trach. She is totally off the ventilator and in fact, it is out of her room. She's been off of it since Sunday. She also is walking with her walker for about 15 feet. This is the distance from her bed to the door.

Nick's appointment with GI went fine. We aren't changing a thing right now. He's growing but on his own curve. For weight he is about on the 40-50% and for height he is only about the 5%. Reflux wise he seems to be better so no major changes right now. We'll see him again in three months.

Nick also got his new glasses yesterday. He looks very nice in them. They have prisms in it but you can't see them. They are blended into the glasses.

That is about all the information that I have for now. Please pray for all the Mito families that have lost a loved one within the past 2-3 weeks. I'm aweful with names so I don't want to mess them up but many of you know who they are. I wrote to my church email group and I mentioned how this is a horrible disease and how there have been about 5 mito patients that have died within this month. I told them how what a testimony these families are to all of us. They are very proactive and the best advocates for their children and for themselves.

Well, I am going to get going. I will update again after Nick sees the Mitochondrial specialist in Boston on Tuesday. Please keep our other friends who are sick at home or in the hospital in your prayers. Pray for comfort, remedy, and sanity during their respective illness'. Please pray for the Thorell family and Kristina. If there are others I'm sorry I missed you. I told you I was bad with names.

TTFN!

Paul

Thursday, November 29, 2007 8:44 PM CST

Good news!

Heidi is now in rehab and is only 20-25 minutes away from our house now. Much better than 2 hours away let me tell you.

I saw Heidi today. She looked great! She was alert and doing PT when I got there. The ventilator kept coming off the trach so the respiratory therapist had to come in and really push it on. I have been in a good mood today because Heidi looked so good compared to 2-3 weeks ago. Today was the first "real" day for her at this facility. She got there last night I guess. The plan is to wean her off the ventilator and help her talk by deflating the balloon on the trach and capping the trach when not using the ventilator. Heidi was smiling and happy to see us. Nick was with me today because he had doctor appointments of his own.

A miracle is happening with Heidi and I don't want to jinx it but she is off TPN and is on feeds. Can you believe that! She is off TPN. The doctors in Boston wanted Heidi to have no lines because they are pretty confident that the central lines are the things that keep Heidi getting infections and what not. So they started her on a feed and increased it so now she is on 60cc's an hour for 24 hours and is tolerating it. This is the miracle because Heidi at home can only tolerate 10 cc's an hour for 4 hours before cramping up. I am just boggled.

Moving on! Nick saw Endocrinology and Neurology today. These were follow up appointments so they were basic and quick.

Endocrinology

Well, Nick had blood work and his Thyroid Hormone level is normal at 1.29 but his TSH is high at 12.5. The doctor doesn't know what to do in regards to treating or not treating Nick. Nick is growing in both height and weight and his thyroid hormone level is normal. He doesn't know why the TSH is elevated when the hormone level is normal. He wants me to talk to the Mito doctor in Boston to get his opinion on whether we should medicate or not. The doctor did say something that I would be in agreement for. He suggested we oould medicate Nick for 2 months. If we see improvement we keep him on meds. If no improvement, we take him off the medication and just keep an eye on it.
Moving on.....

Neurology

Nick's neurologist had heard about Heidi being in the hospital. Don't know how but he did. I told him that he was having anxiety in doing math homework and was still distracted in school. He wanted to put him on a stimulant but I had concerns about that because stimulants can make tics worse for those who have Touretts. He agreed because Nick was doing a lot of facial tics and vocal tics while in his office.

We are increasing one of his meds that he's already on and giving a half of a pill in the AM and keeping 1 at night. We are hoping this will help with his anxiety and focus issues in school. If this doesn't seem to help then the doctor would like to refer him to be seen by a psychiatrist.

Other than that, I'm working tomorrow night and taking the kids to visit their mommy on Saturday. I wanted to play basketball tonight but I wasn't able to. I didn't have anyone to babysit the kids and on top of that I had diahrrea for some reason. On Saturday the kids and I are going to our church's Christmas Party. It should be a lot of fun.

If you'd like to send a card to Heidi I will give you the address. As far as I know, this address works. I got it off the internet. If it doesn't, don't hate the messenger!

Park View Specialty Hospital
Rehabilitation and Nursing Center
Attn: Heidi Martin-Coleman
Third Floor- Room 329
1400 State Street
Springfield, MA 01109

I'll update more when I can. Take care and God bless.

Paul

Monday, November 26, 2007 9:24 PM CST

Good evening!

I am happy to say that Heidi is improving and is getting close to going to rehab. I mean, she isn't ready yet but they want me to look at 2 local rehab places in Springfield, MA. I looked at one on Saturday and am looking at the other one tomorrow AM.

I've been told that Heidi is doing fairly well and she even did a 12 hour breathing trial yesterday. She is off the propofal but is still on 2 other sedatives. They are trying to get her off of those too. Within the week, they are going to change her trach with another one and she may be able to transfer to a rehab facility. It has been slow but she is improving.

We had fun on the Cape. The kids stayed from Wednesday to Sunday. I went to my reunion on Saturday night. I had a good time overall. It was interesting looking at everyone after 20 years. Some looked the same but overall for me, a lot have changed. Few were skinnier but for most of them they have gained weight. I was hoping to see my best friend from high school but he wasn't there. I was having a great conversation with someone who works at one of the hospitals that we go too. I didn't know him in high school but we hit it off on Saturday night. He was kind and seemed like if I needed anything that he would help. He works as a technician in the cardiology unit at one of the hospitals in Boston. If anyone is wondering I did behave my self. I'm not a rebel, never have been and never will. I had one beer and 2 sodas. I mostly chatted and lost my voice because it was so loud in there. People had a wide range of jobs, ranging from housewife, realtor, senator, working in politics, musicians, lawyers, and many other jobs. It was interesting to say the least. I was happy to go. It definitely broke up the stress which was much needed.

Other than that, it was back to school. I work again on Wednesday and Friday this week. In between I want to visit Heidi but my day is shortened tomorrow because I have to check out the rehab hospital in the morning. Maybe I'll go on Wednesday or Thursday AM. I'll have to see.

Keep Heidi and our family in your thoughts and prayers. Once she gets to a rehab facility I'll post the address. It will be nice to get her local so the kids can see their mommy. It has been close to a month now that they havent' seen her. I feel bad for them. Take care and talk to you all later.

Paul

Thursday, November 22, 2007 7:48 PM CST

Good evening!

Happy Thanksgiving and I hope that everyone had a nice holiday.

I am on the Cape and spending some time with my parents. The kids and I are having fun and we ate a lot of food today.

I spoke to the doctors the other day and they had extubated Heidi. Unfortunately, it was for a short period and she had to be re-intubated. Her sats went low and her CO2 was going up. They also found out that her throat was swollen from having the tube in so they are giving her steroids to open up her throat. They are planning on scheduling her for the tracheostomy for next week. However, last night I talked to the nurse who said that she may have the surgery on Friday. We will see.

I am heading home tomorrow so I can go to work and then coming back to the Cape on Saturday. I will be going to my high school reunion on Saturday night and then I'll go to work Sunday afternoon. I'll update on Monday on Heidi and on how my reunion went.

Even with all the stress that is happening in our lives there is a lot to be thankful for. It is sometimes hard to see that but I am thankful for a lot of things. I am so happy and thankful for all our family and our wonderful church family. They have been such a blessing to me and our family.

Until next time....Happy Thanksgiving and please continue to think of and pray for Heidi and our family. Also pray for all of our friends who happen to be sick or in the hospital. Thank you.

Paul

Monday, November 19, 2007 10:50 AM CST

Good morning/afternoon,

Well, it has been crazy here in the Coleman household so let's just begin the journal update.

As you all know, Heidi has been in the hospital for about 3 weeks now and 2 weeks on a ventilator. Some things are improving and some aren't and the things that aren't need to be addressed.

I found out the other day that Heidi's lungs have MRSA in them. This totally explains why her lungs haven't improved hardly at all. The ICU doctors continue to try and wean Heidi off the ventilator but to no avail. At some point during the week, Heidi will most likely be getting a tracheostomy so they can pull the ET tube. I guess they don't like patients having the ET tube in longer than 3 weeks. We are already around 2 1/2 weeks with the tube in her mouth.

I'm not worried about her having a trach, per say, but I'm afraid that she will get used to the vent and not get off of one. I deal with trach's at work so I'm used to them and they don't bother me. The difference is that it is my wife and I'll need to learn to suction the trach if she needs it cleared out. At work I can't do this.

I am having a meeting sometime tomorrow (They will call with a time to talk)to discuss with her other doctors their thoughts and suggestions about the trach. I spoke to her ID doctor this AM and she believes getting the trach is the right choice.

During this week I also had to attend to a few pesty bugs in our house. No, not ants or termites but .............HEAD LICE! Katie brought home some friends on Wednesday and they were having a party. I did her hair with the shampoo and brushed her hair. People from church helped out with doing laundry and bagging up all her dolls. When I tried to bring Katie back to school on Friday, she still had a live bug in her hair so back home we went. I got the doctor to prescribe a different shampoo and this one is powerful. This one smelled like kerosene or gasoline and this one killed them all. I brought her back to school today and no more lice. Yay! I'll rewash on Friday with the stinky shampoo but at least they'll be all dead.

Nick was sent home on Wednesday too but not for lice. His was a rash. We suspect latex exposure, again.

On Friday, I had a meeting for Nick's IEP. Overall, the meeting went well. The staff really like Nick and want to help him succeed. We are trying to get things set up because he will be transferring over to the middle school next year. We are setting up transition times for him to go over to the middle school and check it out.

Other than that, it's been a boring week (ha ha). We are going to the Cape to celebrate Thanksgiving and on Saturday I am going to my 20 year high school reunion. I can't believe it has been that long. I'll be doing a lot of driving but I hope it will be worth it. The kids will spend from Wednesday -Sunday with my parents so I can visit and work a little. Crazy days ahead but trying to keep a positive attitude. I'll try to update before Thanksgiving. TTFN! Keep thinking and praying for Heidi and our family.

Paul

Friday, November 9, 2007 9:48 PM CST

Hello friends and family,

Well, the past week or so has been a roller coaster to say the least. A lot of emotions have been tossed around and it seems like it is never ending. However, I have some good news to report.

I got off the phone a little while ago with a doctor on the Medical ICU floor and she told me the Heidi's chest CT scan "looks a lot better". They are continuing to wean Heidi off the ventilator but it is taking a little longer than they/we had hoped. Yesterday Heidi spiked a fever and they are trying to find the culprit for this too.

For me, I have been trying to find babysitting for the kids so I can go to work. Our church family has come through with this task and they have been a blessing. I don't know what I'd do without their help. They have been so helpful and supportive. Thank you to my College Church family!

I saw my doctor last week and my blood pressure was high. I told him what was going on and that it was probably high due to all the stress in my life. Well, he wanted me to do a stress test and I did it on Thursday (yesterday). I did the test and they said I did great. Now I see my PCP next week to discuss things.

Our church has a Mens Basketball night that started up last night so I went to it. As it turned out only 4 of us showed up so we played 2 games of 2 on 2. Boy was I tired and sore after playing. My legs felt like mush but overall I didn't play to bad. My partner and I lost but it was fun to say the least. Both games were close though.

Nicky and Katie are doing ok. They miss their mom a lot and want her home. Sunday will be 2 weeks since they've seen mommy. I haven't wanted to bring them to see Heidi until she got rid of the ventilator.

Katie has been having a lot of things on her mind during this time. Last Sunday, a friend of ours was watching the kids for me so I could go visit Heidi. Well, in the car Katie told my friend that her mommy was really really sick and that she may die. Also, on Wednesday night the kids went to Awana at a local church and they watched a video about a teenage boy who needed a heart transplant. The boy ended up on a ventilator and eventually died. Our friend said that Katie got a little teary watching the movie and told me about it. I talked to Katie and she said that the movie reminded her of Heather being on the ventilator and her passing away. We had a nice talk about it but it is sad that she's thinking about all of this. I need to contact her social worker again. We've been doing phone tag so on Monday I'm calling again. Oops, Tuesday. Monday is the holiday.

Well, that's it for now. I'll update more when I have a chance. God bless and thanks for checking in on us. Don't forget to sign our guestbook.

Paul

Wednesday, November 7, 2007 8:46 PM CST

Good evening!

What a day! I went to Boston today to visit Heidi in the hospital. I was able to talk to the social worker there and to the doctors taking care of Heidi. Needless to say it was a long afternoon.

Here is the update on Heidi:

Heidi is improving slowly but surely. This AM's x-ray of her lungs are slightly improved and I will take that. It's a step in the right direction and the doctor feels the antibiotics are starting to kick in. Her blood cultures are negative and she is still stable.

The plan now is to keep watch for her lungs and kidneys because she is on high doses of antibiotics. They are trying another breathing trial tonight and hopefully will extubate Heidi tomorrow or Friday.

Our friend, Donna, visited Heidi today for a short period. Her son was in the same hospital as Heidi. It was nice seeing Donna today. Thank you Donna for stopping by. I told Heidi that you were there and she gave a smile.

The nurse practitioner from the metabolic clinic stopped by too and saw Heidi. We talked for a little bit and commented how it was good that I could sign for Heidi so she knew what was happening to her. She said that she wanted to talk to the social worker to see if they can get someone to communicate to Heidi when they are going to do stuff to her so she knows before they do it. We'll have to see.

Other than that, it is a day to day thing. Hopefully, Heidi will continue to improve and she'll be off the ventilator by Friday. She's still very sick but she's going in the right direction.

I'll keep everyone updated once I know more. The doctor is hopeful that she'll be off the ventilator soon. They are just puzzled how quickly she got this pneumonia.

Talk to you all later. Please keep all of our friends who are sick or in the hospital in your thoughts and prayers.

Until next time......

Sunday, November 4, 2007 8:14 PM CST

Here is a quick update on Heidi. I saw her today and overall she looks ok despite being on a ventilator. She looks as though she has retained fluid but overall ok.

The nurse still didn't have any results from any of the tests yet and this is bothering me. She is on IV Fentanyl and Versed to keep her asleep/sedated. They had IV Insulin going becaue her blood sugars were high. She didn't have a temperature today and she is on 45% oxygen versus 60% oxygen the other day.

The plan is to do a breathing trial tomorrow if her blood gases look ok. They'll see how it goes. She's been breathing over her vent so that's a good sign in a way.

One thing they want to look at is why her hematocrit got low so quick. They are doing another blood draw tonight to look at her white blood count and hematocrit. If low they may look at something with her bone marrow.

I am having a better feeling with Heidi getting off the vent. She's being a fighter and is breathing over the vent. She needs to calm down in order to get off the vent though.

Heidi was cute though. When I arrived I held her hand and talked to her. She briefly opened her eyes and smiled at me. She attempted to say I love you but set off the alarms on the ventilator. I really hope the breathing trial works tomorrow. I am planning on going back on Wednesday so I will probably update more then.

Nicky and Katie had fun today with our friend. They went out for lunch at Friendly's and went to a skating party (roller skating) this afternoon. Thank you Lynn for watching them and for giving them a good and not so stressed day.

Talk to you all soon. I'll update more on Wednesday night.

Paul

Sunday, November 4, 2007 0:41 AM CDT

I know it's late but on the positive side it is daylight savings time so it is actually 12:45 AM as I'm writing this instead of 1:45.

I did a post last night but apparently it didn't go through. I was mad but such is life.

In regards to my update of last night, the doctors did a bronchoscopy to look in her lungs. They found "yucky stuff" in it and a lot of phlegm. They believe they saw a mucous plug and she probably has pneumonia. They cleared out all her lungs and changed over some of her meds. She is on Zosyn more frequently, they added fluconazol (an anti-fungal), and changed her Vanco to one time a day instead of 2 x a day. She did spike a fever of 102 and were looking at her closely. She is on 60% oxygen but her vitals are good.

Todays update is that she had an ok day today. No results from tests as of yet but they were able to wean her off some of the oxygen from the ventilator. This is a step in the right direction. She still had a slight fever so they did more cultures today so we'll see where these take us.

I'm visiting Heidi tomorrow (well today {Sun.})and a friend of ours is watching the kids for me. They will have a lot of fun. I'll see Heidi for a couple of hours because I have to pick them up around 7:30 PM.

At home, I'm trying to shuffle schedules around so I can work and fit in the extra curricular activities for the kids. Our church family has been a Godsend during all of this. In fact, they have been helpful and supportive to our family throughout our whole ordeal with the Mitochondrial Disease.

My doctor wants me to do a stress test in a week or so. My blood pressure was high when I saw him a week ago. He wants to make sure my BP is elevated due to family stress rather than something else.

I got a call from someone from my high school. We are having (I can't believe it)our 20 year high school reunion the Saturday after Thanksgiving. I would love to go but I don't know if Heidi will be home or in rehab or if she'll want to stay or go with me. I guess I'll play it by ear. I would love to see how my old "Bandos" (or as the football team called us "Band Geeks") are doing and what they are all up to.

Well that's it for now. Thank you for checking in on us and have a great day. I'll update again when I know more about Heidi. Have a great day!

Paul

Thursday, November 1, 2007 9:23 PM CDT

Good evening!

I hope everyone enjoyed Halloween. Nick went as a cat and Katie went as a Chiger (half cheetah half tiger). Katie came up with that name. I had to work so I missed trick or treating. My sister-in-law came over and took the kids around the block. Where was Heidi in all of this? Well, let me tell you..........

Heidi went to the local hospital on Thursday late afternoon. To be more specific, last Thursday. She spiked a fever again around 101-102. She complained of a headache but was lucid and wasn't talking gibberish. She grew a nasty bug called Soracia and as it turned out she has a yeast infection in her blood too. She came to Boston on Sunday night and yesterday they pulled her line and put in a temporary line in her right IJ (by her neck). After doing so she was having breathing issues and was sent to the CCU. They put her on her bipap machine for 6-8 hours but her respirations stayed around 35-40. She was being uncomfortable but the doctors were afraid that she'd arrest. So, this AM around 6 AM I got a call from a doctor saying that they were going to intubate her because Heidi's breathing was getting worse. He said that Heidi agreed to the intubation.

Today was a day for tests to see why her breathing was labored and Oh, I forgot to mention! Heidi had vomited some blood and had blood coming out of her g-tube. They were looking to see where the source of this blood was coming from. As of 10:30 PM tonight, they don't have the results of the tests yet. Maybe tomorrow AM. I was told tonight that she is doing good and was resting comfortably. Her oxygenation is better and so isn't her blood gasses. They are keeping her intubated until they get an idea on why her breathing got labored. I have two theories: 1) When removing her central line or placing the temporary line a blood clot got loose and went to her lung(s) and 2) When she vomited she swallowed some of it and aspirated on it. She is famous for getting aspiration pneumonia. Hopefully tomorrow we'll know more. Please keep Heidi in your prayers.

I was going to visit Heidi today because I was actually in Boston for an appointment with Nick. He saw Dr. W. who is the nicest doctor in the world. Unfortunately, his appointments go long but he's very thorough. Nick got new molds of his feet so he can get new DAFO's (foot braces). His appointment went fine which I was happy. We didn't visit Heidi because Heidi wouldn't even know we were there and I didn't want Nick to see his mother with a tube down her throat. The last time they saw that was with Heather in the ICU. I didn't want him to associate a tube down the throat and a family member passing away. To be honest, I have this fear right now because Heidi's lungs aren't the strongest and who knows if long intubation will cause her to need ventilation permanently. We were told for Heather that if she was intubated for a period of time that she would be dependent and she was. Unfortunately her lungs "pooped" out on her. I don't beleive we've been told the same scenerio for Heidi but the thought is there and it concerns me. She's intubated for "safety" reasons.. to prevent her from arresting.

The doctors have also given Heidi 2 units of blood because her numbers got low. They are giving her pain medicine so that she's comfortable. Needless to say, I'm doing a lot of praying!

Please pray for Heidi and for a quick recovery. Pray for our family as we struggle with Heidi being 2 hours away. Also pray that I am able to find people to babysit so I can work and maybe even visit my wife while she is in Boston.

Pray for our friends who are either sick or hospitalized right now. The Lord knows who they are but keep them in your thoughts and prayers. Even though our situations may be different, the impact of this horrible disease (Mitochondrial Disease)is universal. It may vary to a certain degree, but dealing with Mito is universal.

Sorry, I'm mumbling and I'm tired. I have to work tomorrow night and work on babysitting for Monday and Tuesday night. Fun, fun, fun. I'll update more when I get more information. Talk to you all soon. Please don't forget to sign our guestbook. TTFN!

Paul

Thursday, November 1, 2007 9:23 PM CDT

Sunday, October 7, 2007 7:40 PM CDT

Good evening!

I'm so tired I don't know where to begin but I'll start at the beginning I guess.

Heidi got off the antibiotics on Sunday AM. She eventually developed an ear ache and on Thursday she spiked a fever of 103.5. She went to the local hospital and said that she had a whopper of an ear infection and her cultures came back positive for something in her blood. Heidi's J-tube site looked yucky. It had green and brown discharge coming out of her stoma. The bug may be coming from that or the ear. Who knows? Her blood pressure has been low and was put on medicine to bring her blood pressure up.

As for right now, her fever is gone and her blood pressure is back to normal. I saw her tonight and she had a headache and was vomiting. The doctors think she is having a reaction to the antibiotic which is causing her to vomit. Supposedly, they are changing the antibiotic to something else.

Today was the Mito-What? Walk in Longmeadow, MA. It was perfect weather....not to hot and not to cold. There was a good turnout and I think it was better than last years turnout. I saw some familiar faces and met some new ones. I saw one of Heather's old nurses and we chatted about Heather once again. We had a nice walk and talked about the good stuff about Heather. Heather was and is truly special to us all.

The kids are having a hard time with mommy being in the hospital. They are acting out more and today was bad. Granted we were all tired from the walk but they kept going at each other all afternoon. Nick bothered Katie, Katie bothered Nick, and on and on it went. Can you say, "Headache!" It was early to bed and I am finally relaxing.

I work tomorrow and Tuesday so I'm finishing up trying to find people to watch the kids since Heidi is in club med. I had people to be here for when Heidi was here but now I need people from 3:30-6PM

I'm hoping this will be a short stay for Heidi. Please pray that they find the bug and Heidi is on the right antibiotics. Also, please pray for Zach, Kristina, and Tim for they are dealing with a lot of health issues right now. I know there are probably more people with health issues but I can't think right now. I'm just beat from the walk, and having the sunshine hitting my bald head. Ha ha!

Oh, I went to a Memorial Service for our trumpet professor who passed away in May '07. Heidi and I were music majors at UMASS Amherst and we got our degrees in music education. Our trumpet teacher's name is Walter Chesnut. This person was so full of life and had so much compassion for music. His memorial service was wonderful. I saw old friends and old professors. It was like a big reunion. There was trumpet playing and singing and his daughter who is a singer spoke of her childhood with her father and it was very touching. He will be missed. God bless you Mr. C!

Our friend is teaching us sign language and I have homework to do by Friday. I have to learn a short story and be able to sign it by Friday. I joked with her today and said can the story be 2-3 sentences long. She said, "No, it has to be at least 8 sentences long." I have my work cut out for me. Well, take it easy and thank you for stopping by. Don't forget to sign our guestbook.

Paul

P.S. Go Patriots and go Red Sox!

Saturday, September 22, 2007 10:43 AM CDT

Hello everyone,

Well, good news! Heidi is home from the hospital. She came home Thursday. This visit wasn't one of the best ones she's had locally but none the less, it beats having to drive to Boston.

The doctors said that she was septic. They believe it was from the same bug that gave Heidi a UTI last month that probably didn't go away. Personally, I think it may be a combination of this bug and the manipulation of putting the j-tube in by wire into her intestines. Heidi got sick really fast and I don't think that it was coincidence that she had her j-tube placed the day before.

The hospital had misplaced Heidi's glasses and we couldn't find them while she was there. As it turns out, the nurses in the ER put her glasses in an open gauze package. We almost didn't see them because I was about to toss the package out. Fortunately, I looked in the package.

Another whopper of a story was that a CNA came in the room with latex gloves on. Heidi is allergic to latex. Anyways, this same CNA came in a second time with latex gloves on and Heidi started to wheeze and her throat felt like it was closing up. She buzzed for the nurse and the nurse took 20 minutes to answer the call bell. Heidi asked for benadryl and was eventually ok. The sad thing is that there was a big white sign on her door that said Latex Allergy. Heidi told me that the doctor put in her notes that Heidi had a "Asthma Attack" rather than an reaction from exposure to latex.

Today is Heidi's birthday. The kids made cards for Heidi and we plan on going to a Fall Festival in our town as long as Heidi is up to it. The kids had fun at it last year.

I have a cold now. I got it two days ago. Lucky me! Heidi goes to Boston on Monday to see Infectious Disease and on Friday our friend is coming to our house to teach us more sign language.

Heidi is happy to be home and is doing well. We are hoping and praying for another good stretch of good health.

Please pray for all our friends and families who are sick or in the hospital. Please pray for our friend Donna and her family as they need to talk to their son about some news from the doctors. Pray that the Lord is able to guide them in the best way possible to communicate with their son and to comfort him. Thank you.

Have a great day and I hope that all your children are doing well in school so far. Take care and God bless.

Paul

Saturday, September 15, 2007 6:55 AM CDT

Good morning!

Heidi got her new J-tube placed a week and a half ago. Unfortunately, it ended up being the wrong size. Believe it or not it wasn't the hospitals fault. Heidi went back on Tuesday to get this one in and it is still the wrong size. Ughh! Heidi has a Mickey Button J-tube and the problem is where the button sits on her stomach and where the balloon is. They couldn't blow up the balloon because it made the button indent into her stomach. So we are looking for another tube that is longer from the button to the balloon.

Heidi is currently in the hospital. Fortunately, she is in our local hospital and not in Boston. She went in on Wednesday. She was tired on Wednesday (which is normal after a trip to Boston the day before)and took a nap. When she woke up, she was freezing and had a 102 temperature. We checked her temperature again at 6 PM and it went to 103.7. Heidi was then confused, talking jibberish, and not being safe. I was going to drive her to the hospital but I wasn't comfortable doing it. We had called the metabolic doctor on call in Boston and she had told me to send her to the hospital. So 911 was called and they took her to the hospital.

Heidi is still in he hospital. She is getting better slowly but surely. She's on 3 different antibiotics right now but seem to be doing their job. She is in the ICU and may go to a different floor if someone needs an ICU bed. They haven't found the cause of infection yet, although I suspect it has something to do with the J-tube placement.

The kids are back in school and they like it so far. Nick is in fourth grade and Katie is in third grade. Nick started back with music therapy on Friday and Katie started back with dance. She is doing beginning Jazz. She said she liked it so we'll see.

Our Masshealth misery continues but we did speak with a lawyer. He said we could appeal but it may be lengthy and there is a potential that we may not win. His suggestion was for us to write a letter and state that Heidi is working (which she can't really but he said to do this)and she is making x amount of money an hour for 40 hours a month. Once we find someone who can do this Heidi can get back on Massheath. This whole process has been unbelievable and very stressful to say the least. Another hair folicle comes out of my head everytime I think about it.

Our dear friend, Lynn, is teaching Heidi and I sign language. We are having fun doing it but it has been hard for me. I'm learning it but it is a lot slower for me than it is with Heidi. We did 10 minutes of silence and just signed (no talking)and that was hard for me. They were going pretty fast and I just looked dumb-founded. I understood a little bit and got the jist in some places but if I had to put a percentage down I got maybe 30-40% of the conversation. As they say, practice makes perfect. I have my homework to do that's for sure.

Tomorrow is the 2 year anniversary of Heather's passing and going up to Heaven to be with our Lord and Savior, Jesus Christ. It is hard to imagine that she would have been 5 years old now. I am going to take the kids to the cemetery tomorrow and put flowers down by Heather. I wish the whole family could be there but that will be hard since Heidi is still in the hospital. I'm sure it will be an emotional day. So many emotions that it's hard to explain.

Ironically, Sunday is the beginnng of Mitochondrial Disease Awareness Week here in Massachusetts. I'll be wearing my Mito pin and spreading the word. Our Mito Walk is happening on October 7th. I hope it will be good weather that day.

I think that's it for now for an update. Keep us in your prayers, we can definitely use them. Please sign the guestbook when you can. We love to hear from all of our friends! Take care and God bless.

Paul

Saturday, August 25, 2007 8:56 AM CDT

I'm sorry, I know it's been a while since our last update so I apologize.

In general, we are doing ok except this week it has been rough with the family as a whole. Heidi was in the hospital Sunday-Tuesday and as it turns out, she has another UTI. She's feeling a lot better from this now that she's on antibiotics. Nick had a migraine the other day and wasn't feeling well. He was in hybernation and throwing up most of the late afternoon/early evening hours. Kaitlin has been sick for the past week (almost) with high fevers (101-103) and a nasty sore throat. They tested her for strep and it came back negative. The doctor says that it is a virus and that the fevers may last through the weekend. If she still has them past Sunday to give her a call. For me, I'm just dandy and not sick (knock on wood).

We are having massive Masshealth (Medicaid) problems with Heidi. They refuse to put her back on Masshealth. They say she is ineligible. The reason is I make too much money for her to be on it. Can you believe this? I work 2 part time jobs and both are just over $10 an hour. The thing that kills us is that they include SSI and SSDI for our income and I guess it puts us way over the limit to get Masshealth. We are appealing their decision and I have contacted "Legal Aid" to get assistance with this. We have failed in getting anywhere with Masshealth and the same goes for 2 social workers who have called too. We'll let everyone know the outcome once we know it. We are fighting for Heidi to get reinstated because Masshealth is the only program that we know of that pays for PCA's. We can't afford to pay out of pocket and Heidi needs them to be with her so I can work. Please pray that we have a good outcome with this.

Katie had a great time at camp this year. It sounds like she had a lot of fun. Nick went to one camp (Bible camp) and was home the rest of the summer. He doesn't tolerate the heat very well. He went to Summer school over the summer but it only lasted a month.

Our kids start school the day after labor day. We can't wait (sorry kids!). Nick is going into 4th grade and Katie is going in 3rd. Katie has Nick's teacher from last year and Nick has a new (I believe) 4th grade teacher. I hope they have an excellent school year. The kids teachers were excellent last year and I hope their teachers this year will be the same.

Nick said something very cute this AM. I worked last night but Heidi said that there were kids smoking outside our bedroom window next to the street light. Well, Nick saw them and started to tell Heidi the bad things that smoking does to you. This AM I asked him about what the kids were doing and he said they were smoking. He gave the lecture on how smoking is bad for your health. After his lecture, I said are you going to smoke and he said, "NO! I'd rather watch the Doodlebops than smoke!" The Doodlebops is a kids show that is on the Disney Channel. Nick does not like this show and everytime it comes on he yells and leaves the room. It's pretty funny if you ask me.

The doctors are finally going to put in a real j-tube for Heidi. They are doing it on Tuesday Heidi is also seeing the pysiatrist on Tueday and the GYN on Wednesday.

Well, I guess that's it for now. I'll update after all of Heidi's appointments this week. Please keep all of our friends who are sick or in the hospital right now in your thoughts and prayers. I'm not going to mention names because I don't want to leave anyone out. I will feel bad if I do this.

Have a great day and I'll update later this week.

Paul

Thursday, July 26, 2007 9:10 PM CDT

Good evening!

I wanted to update on some recent doctor visits for Heidi that she's had during the past week.

Last Thursday, Heidi saw her primary doctor in Boston. Heidi has been having the bumps in her hand joints and her hips have been hurting. We brought the x-rays to show her but she didn't know what to think of them. She did some blood work to check for Vitamin D deficiency and a few other things. Heidi also did a urine culture while she was there. Well, long story short, Heidi has a UTI and we found out today that her Vitamin D is low. I guess it is 15 and the range starts at 20. The doctor is trying to figure out how to supplement the vitamin D into Heidi. Heidi wants them to check for some vitamin D level that is with the thyroid. If this is ok then she may not need to be supplemented (or something like that?).

The radiology department called the other day and said the x-rays of Heidi's hands and pelvis are normal. If this is the case, then what are the bumps in Heidi's joints that 2 doctors have noticed and felt?! Ughh! We need answers.

On Monday of this week, Heidi saw the ENT and GI doctor. In the ENT appt. we discussed cochlear implants. They need all of Heidi's doctors to approve the surgery. Heidi is going to need to talk to everyone because Heidi doesn't do to well with anesthesia.

During the afternoon, we saw GI. Her doctor wasn't in but he had a good excuse. One of his family members passed away so our prayers go out to his family right now. Anyways, as usual, the GI doctors hadn't looked at the new tube that we saw at the Oley Conference. We faxed it to Metabolism and they faxed it to GI about 2 weeks ago. It wasn't in Heidi's GI file and they got it off their e-mail. The GI doctor sounded hesitant to putting it in because he hadn't put a tube like that in someone before and didn't think putting the tube farther down into the intestines would help. Another GI felt that if it was farther down then the motility might be better and she could tolerate more feeds. The GI doctor wanted to consult interventional radiology and see if they would put it in. Heidi told them she was willing to try it and would not place any blame on them if it didn't work. We'll have to see.

Today, Heidi had a cat scan of her chest to check for the blood clots in her chest. Apparently, they are still there but the pulmonologist didn't think they got any bigger or that there was more of them. She is going to compare them to her old film and see if they are getting better/worse/ or the same.

After the cat scan, Heidi saw the pulmonologist. This doctor is new to Heidi because her regular pulmonologist (who she loved and adored!)moved on and is working at a different hospital now. Anyways, the doctor admitted that she hadn't looked at her file but they had a discussion anyways. She hesitantly said Yes to cochlear implants but said the final decision would probably be the mito doctor in Boston. We were joking when she got home because he has been known to tell patients to cancel trips/vacations due to their increased fatigue or just not feeling well. I personally don't feel he is going to give her a 100% go ahead but we'll see.

Having surgery for the cochlear implants is going to be a very hard decision. Heidi would be under anesthesia for 2-3 hours for both ears. Heidi doesn't tolerate anesthesia and has had SLE's (stroke-like events)in the past. There are many questions and unfortunately they are tough ones. For example, If they do surgery, do they do one ear or both? Most people get 80% of hearing back after surgery but Mito patients are in a different category and the statistics are probably not the same. Most likely, the percentage is a lot lower. If her hearing is improved, is it worth (possibly)sacrificing another organ or having another stroke-like event? She may get hearing back but intestines shut down totally. She may get hearing back but blindness in both eyes get worse. These are questions and hypothetical (but possible)circumstances that she is going to need to think about and discuss with her Mito doctor. I don't envy her decision and I don't know how she'll answer. Heidi wants to try and eat more (well, be on feeds more)and get off TPN for a while. There's a chance that having this surgery could hinder this goal.

I have my thoughts but I'm not the one that has to decide to go for or not to go for cochlear implants. I'll be happy to discuss my thoughts and feelings with Heidi when and if she asks me. All I know is it is a hard decision to make and I'll support whatever Heidi decides (even if it's wrong! lolololololol). I'm joking honey!

We are still trying to get the TTY back and return the VCO phone. Heidi's hearing is progressing even more. We get a new mold for the hearing aids tomorrow. Heidi has been very depressed because of her hearing. Things are harder for me in a way because Heidi wants me to interpret for her at her appointments. I know sign a little bit more than the PCA's so she understands me better when I talk and when I sign. I'm proud to say that I have been practicing but there are so many signs and a lot of them are very similar. One wrong move you say an innocent word like girl but the wrong hand placement or facial expression you can say something totally different. Needless to say, I have a lot of learning and practicing to do. Heidi wants to try and talk to people in the deaf community. I think this would be good for her.

Well, this is getting to be a book. I'll update again (hopefully) this weekend sometime. Please sign the guestbook. We love checking in to see who is visiting our page. Have a pleasant evening and talk to you all later.

Paul

Sunday, July 15, 2007 9:47 PM CDT

Hello everyone!

Boy, has it been over a month already? Time flies when you're having fun.

Let's see, where to begin? Health wise for Heidi she has been doing ok. She hasn't been hospitalized in a while with any infections so that is good news. The main issues right now is that she is profoundly deaf and has bumps in her joints in her hands and her hip hurts. Her local PCP didn't know what to think of it but Heidi did some research and she thinks she has Vitamin D deficiency. All the symptoms add up, she just needs a doctor to put the test on a lab slip so she can check it out. She had this problem twice before and ironically it has been a year apart. It always becomes a "miraculous" discovery by some resident. Bunch of "meatheads".

Her hearing has progressed very quickly and she is on the strongest hearing aids available. The hearing aids let her hear sound but everything sounds the same. She can't hear music and the hearing loss is making it harder to speech read. Heidi is profoundly deaf and is learning sign language rather quickly for necessity but mourning the loss to hear music, listen to her kids laugh, hear Paul's whispers of "sweet nothings" and his BAD jokes, the cats meows, and a million sounds that we take for granted. Heidi can hear a few low sounds that are louder than 100 DB (like a garbage truck) but absolutely no speech sounds with/without the hearing aids.

We went to the Oley Conference at the end of June and we had a lot of fun. It is a conference that I see us going back to again if it is in the New England area. We met so many nice people and it was helpful to discuss similar issues with people who know what we're going through. Heidi had her "barf bag" hanging out and nobody said a thing. We got a lot of good samples and we found a formula that Nick likes!

Nick isn't eating as well as we would like. He has the slow gastric emptying and is full the majority of the time. We found that he likes Vital JR but our local infusion company don't have it. They don't have the "shelf space". We may need to use a different vendor which will stink because we have used this company for a while now. We are also discussing Nick having a G-tube. This has been a sticky topic at our house but we'll come around at some point.

I have been dealing with type 2 diabetes and am on insulin now. I have met one goal and now my endocrinologist wants my AM bloodsugars when I first wake up to be 80-120. Needless to say, it isn't there yet. I have to increase my insulin until it get there. I'm not happy because I have to put this "9 inch dagger" into me. Actually, it is 5/16 of an inch but I hate needles so it might as well be a 9 inch dagger! I also had another sleep test to try me on a CPAP machine. I started on a pressure of 5 and I ended up at 13. I'll find out in a couple of weeks to see what my doctor says.

Katie went to girl scout camp and she loved it! We hope she is able to go back again in August. My chore now is to see if there is room at a local camp in town.

We are trying to get a hearing dog but there is a long wait for them. If anyone has some good leads for service dogs please let us know.

Well, that is it for now. I promise to try and update a lot sooner. It's been hard to update because our computer died and we have to use the laptop which Nick hogs! Have a great day!

Paul

Saturday, June 2, 2007 1:27 PM CDT

Hello dear friends,

It has been a while since our last update so I'll try and fill you in on things. Heidi's line placement went fine and she has yet another femoral line but on the opposite side. Heidi is having an excellent stretch of good health lately and it is so nice to see.

Heidi's hearing aid (well the mold) keeps coming off so she got fitted for new molds locally. They will be a lot better and not made of plastic.

We're babysitting my sister-in-laws cat for a little while. She is moving and she can't have more than 2 pets living with her. Her cats name is Monster. She is getting used to the house and our 2 cats.

Nick had GI appointments last week and we have some news to report on all his tests. The endoscopy itself looked fine. The biopsies showed something that hinted towards the Celiac diagnosis. We are pretty much stating he does have the Celiac Disease. The PH probe didn't show any acid reflux so any reflux is probably food particles coming up. Also, there was no correlation between his coughing and "reflux" coming up. The gastric emptying test showed a lot but we weren't surprised with the results. We knew he had slow gastric emptying from 2 years ago or so but this proved it even more. He emptied 24% of the food into the intestines and a half hour later he only emptied 2% more for a total of 26%. The doctor prescribed Reglan to help empty his stomach faster but we had reservations putting Nick on the medicine because of reactions that Heidi and Heather had with the medicine. Heather had a dystonic reaction to it and Heidi's eyes rolled up and fluttered (or something like that). He is on a very low dose of Reglan and in a month or two we'll see GI and he may increase it depending on how Nick is doing on it.

I'm happy to report that I have finally gotten my blood sugar to be under 150 first thing in the morning. It only took 40 units of Lantus to get there but it is better than 80 units which the nurse practitioner at the diabetes clinic was thinking that I would need. If it stays under 150 then I may be able to get off one of my oral medications. I am missing my soda but to be honest I haven't quit cold turkey. I don't have any in the house but if I have time and am near a store I may buy a soda for my drive to wherever I'm going.

Kaitlin had dance pictures today and it was hot and complete chaos in the dance studio. I have to admit, I think the pictures are going to be beautiful. The dress is adorable and Katie has one other classmate in her group. They are partners in crime that's for sure. They both looked adorable in their outfits.

Now, we are looking for camps for the kids for the summer however Nick is mostly staying home in the AC. We are also writing letters to local civic organizations to try and get funds for our addition to the house. We need this addition built ASAP.

Well, that's it for now. The kids are off from school starting the 19th. God bless/help us! Please keep all our friends in your prayers who are sick or are having a hard time with this disease. Please pray for our friend Tim who was heading to the ER with a possible line infection. Until next time, have a lovely day and stay cool.

Paul

Monday, May 14, 2007 9:37 PM CDT

Here's an update to our update

Two hours after I wrote the previous update, Heidi's central line springs a leak. It has been repaired once and we went to the ER on Friday because two of the lumens were blowing up like a balloon when she tried to flush it. So the "good one" blows a leak before the other two. Go figure!

Anyhow, Heidi is in Boston right now waiting for them to give her a new line. She may get it tonight or tomorrow depending on certain circumstances. Heidi is ok and isn't sick. This is a mechanical problem not a sick problem. I should hear more tomorrow when I talk to Heidi. Talk to you all soon.

Paul

Monday, May 14, 2007 8:53 AM CDT

Good morning!

Ok,Ok, I realize I'm behind in updates and I'm sorry. I have been reminded by several people that I haven't updated and I actually have time to do this now so here it goes.

Heidi got out of the hospital on May 3rd. The final verdict (they think) is that she had pneumonia, possibly fungal. She has been on antibiotics and they seemed to be working.

However, a couple of red flags flew up during the week that we had to address. Heidi started on a new med that you are supposed to start off on a low dose and then work your way up. The doctor wrote it for 3 times a day instead of 1 dose a day and then increase after a while. Heidi became very sleepy/fatigued and wasn't the nicest person (or awake person) to deal with. Another red flag we found out from our pharmacist. I went to refill the anti-fungal antibiotic and found out that there is an interaction with Heidi's pain patch. It can cause cardiac problems or a "dumping" effect of her pain medication which can cause fatigue. We addressed these two red flags and we think everything is all set. We do think it's the new medicine she started that caused the majority of her sleeping issues.

In general, other than the fatigue, Heidi has been doing well at home. We went to the ER a couple of days ago because Heidi's central line was blowing up like a balloon when she was trying to flush it. We TPA'd the line and is working better now. However, we need to contact the surgeon to possibly place a new one in. For a line that's been in for only 4 months there's been several red flags with this too.

We have our last sign language class tonight. We are looking forward to going. Katie is excited because she asked the teacher to look up the sign for "farting". The teacher found it and will show her tonight.

We are still trying to get funds for the addition. I just found out yesterday that the contractor that was going to do the work is leaving the area. His girlfriend is going to college down south somewhere and won't be able to do it. He's giving our paperwork to a friend of his and he will see if he can do the job.

Other than that, same old same old. I'm busy as usual. I found out that I can't take Anatomy and Physiology until I take a science (Biology). I hate Biology. I'm good with patient relationships and hands on stuff but science, yuck! Give me information and how to look it up and I'll be fine.

Nick had an endoscopy done on the 8th. He was a trooper. He did well. We go on the 24th for a gastric emptying test and then we have an appointment with the GI doctor to discuss all his tests and to see where do we go from here in regards to his reflux.

Oh well, time to get going. I think I updated on everything. I hope all the mothers had a beautiful and wonderful Mother's Day. Take care and God bless.

Paul

Tuesday, May 1, 2007 9:27 PM CDT

Hello all,

Well, here is the update on Ms. Heidi. She is still in the hospital but getting better each day. She has been having issues with a nasty migraine but is a lot better now. The doctors still can't find the infection but the combination of antibiotics that she is on seems to be working on whatever she has. No mention of discharge yet but Heidi is hoping by the end of the week. I like her positive thinking.

The kids and I went to our first of 3 sign language classes Monday night. We had a lot of fun eventhough Heidi wasn't able to go. Sorry honey! Heidi's PCA came too and we got a lot of signs to practice. It looks like I'm back to studying again. Ha Ha. On a serious note, I am planning on going into nursing but I missed the application cutoff. So, this summer I'll take Anatomy and Physiology and apply to nursing school after that. I'll go for my LPN and then maybe my RN (who knows?).

We are anxious to getting the addition done. We have plans and we like them a lot. Unfortunately, the quote is more than what we received for the grant so we have to do some fundraising. We have to come up with $25,000. I wish we knew this prior to refinancing our mortgage. Ughh!

Anyways, that is it for now. Please pray for a speedy recovery for Heidi and for sanity in our house while she's away. Also, pray for our friend Tim as he had some issues with his J-tube. Pray that it cooperates and stays in the correct spot. Furthermore, please pray for a friend of ours who just found out she has uterine cancer. We love her dearly so pray she gets proper guidance and medical treatment.

Well, that's it for now. Time to practice some signs and to do some more cleaning. If only it can magically stay clean. Ha Ha! I can dream can't I? Have a great evening/night and I'll update again in a couple of days or so.

Paul

Saturday, April 28, 2007 11:48 PM CDT

Hi,

Just a quick update to say that Heidi is in the hospital. She went in on Thursday afternoon with a 102.8 temperature. She was hallucinating and very out of it all day. The hospital drew cultures which we are still waiting for. As for now, we know it isn't a UTI. They are thinking a line infection or maybe a fungal infection somewhere. I should know more tomorrow (or is it today???) when I go and visit her. If I don't update tomorrow night when I get home from work I'll definitely update on Monday AM.

In other news, my doctor wants me to go in for another sleep study and trial a CPAP machine. He says I have moderate sleep apnea. Yay me! NOT! However, it does explain why I'm tired all the time.

Other than that, we are supposed to go to our sign language class Monday night. I don't know if Heidi will be out in time but we still plan on going. We'll take good notes for Heidi. Ha Ha. If Heidi's home on Thursday the gentleman from the Verizon program is coming over to the house to show us how to use the VCO phone. We can't wait.

Well, it's late so I'm going to get going now. Talk to you all soon and thank you for stopping by. TTFN!

Paul

Friday, April 13, 2007 9:36 PM CDT

Good evening!

Well, I'm going to cut to the chase. Heidi went to the local hospital today. She was having severe stomach cramps and vomiting. Some of it was her fault (sorry hun!). Last night Heidi wanted to try to eat a Calzone (yes a calzone...)and she ate maybe 3/4 of it. She said it tasted really good. Unfortunately, at 3:30 AM she woke me up vomiting and wanting Zofran and some Ativan (and a bucket). The Calzone was still in her stomach this AM and the pain kept getting worse.

Around 2 PM Heidi said she had to be seen and I said, "Where?" She said take me to the hospital. I confirmed what she said and I said, "Do you want me to call 911?" and she said, "Yes."

The doctors are saying that she is having a pseudo-obstruction flare-up. The ER didn't do a good job with pain management but once she got to the floor they gave her dilaudid and Heidi was a happy camper! Hopefully this will be a quick stay and she can come home tomorrow.

We had a meeting with Nick's teachers today. It was a BIG parent/teacher conference. We discussed seating options for Nick and they want to adapt normal school chairs and add some hip pads things and arm rests. We found out that Nick did fairly well on his English MCAS tests. He has an accommandation to do it with one teacher in the room. This way he has less distractions. The main concern that was mentioned was for next year and in particular staying focused in school and handwriting. We are also going to look into Nick having a one-to-one para for himself. Academically Nick does fine, it is keeping him focused is the hard thing. We are looking for him to have an autism paraprofessional to work for him instead of a behavioral paraprofessional. Right now there is a behavioral para in the classroom and she splits her time with Nick and two other children. I know one of the other children and he can take up a lot of the teachers time. This time of year is hard for him and he needs someone to keep him on task. Overall, the meeting went well and a lot of good ideas were tossed around.

Heidi saw Infectious Disease on Monday and she has a nasty infection around her J-tube. She is on vancomycin right now for that but she has some kind of (I think) staff orious??? They aren't sure if it is MRSA or not we haven't heard yet.

On Tuesday, Heidi saw the Gynecologist. The biopsy was negative for cancer or anything bad like that. The doctor doesn't want to do surgery yet because Heidi is a bad surgical candidate in general. However, she has two thoughts to try and stop the bleeding. One thought, give her depo-provera shots. The second thought was to put in an IUD. This will eventualy slow down any bleeding and perhaps stop her periods. Heidi will let the doctor which way she wants to go on the 25th. April 25th is decision time. Go Heidi!

Other than that, we can't wait for Heidi to get home from the hospital. The doctors love Heidi because she tells them everything about her and what's she's on. The doctors don't have to think a whole lot over there. I noticed though that they need to get used to Heidi being deaf. The nurse kept forgetting to look at Heidi instead of turning away. Also, the doctor talked so quickly Heidi had to tell her to slow down. It is going to take some adjustment for everyone to get used to the fact that Heidi is deaf now. Heidi asked that a note be put on her door stating that the patient is deaf.

Well, that's it for now. I hope everyone has a nice weekend. I'll update again once Heidi gets home. Thank you for stopping by! Please sign the guestbook. It's nice to see who stops by. Talk to you soon.

Saturday, April 7, 2007 9:05 PM CDT

Good evening and Happy Easter(almost)!

We only have a few things to update everyone about but I had to start off with something funny my daughter, Kaitlin, said this AM.

Kaitlin was cleaning this AM and I must say she did a good job. Heidi and I made a big deal over this and I told Katie how proud I was of her for doing all that cleaning. Well, Katie went in and saw Heidi and they were talking about an allowance. Heidi said to Katie, "Boy, with all the money you can get you can buy your own sheets for your bed." Katie said, "Yah, and I might buy a flat screen tv too." Needless to say, Heidi and I were floored when she said that!

I had a sleep study done locally a couple of days ago. Not much new to report from my last one that I had about 10 years ago but it showed I have shallow breathing and my O2 Sat levels go into the 80's when I'm sleeping. I also snore a lot too. The sleep technician hinted she wouldn't be surprised if I came back for a CPAP trial. Boy, Nicky and I would be twins. We'll see what my doctor says in a couple of weeks.

Now, we have good news and bad news. Good news is that we spoke to the carpenter who is willing to do the addition to our house. We saw the prints and we like everything he said. Unfortunately, the price has doubled so now instead of trying to get just 2-4 thousand dollars we need to come up with another 23-24 thousand. The estimate came up to $54,000 Now we are going to attempt to contact the Knights of Columbus for help. We heard that they may help with financing the bathroom. We have until the end of the month to let him know what we want to do. He has 4 payment periods and each is about $13,000 each. I don't know what we'll do but we need this addition! The plans look great and space wise it is perfect for Heidi. We need financial help fast!!!

Heidi got an intersting phone call the other day. Her doctor in Boston called to say that they were sending her antibiotics for a UTI. We were kind of puzzled because she did a culture a week and a half ago and now they decide to tell her she has one?? Anyhow, she is on the antibiotic and is doing better. Heidi (knock on wood) didn't have too many symptoms from this so fortunately it wasn't a bad UTI to deal with.

Heidi has 2 appointments this week in Boston. Infectious disease on Monday and Gynecology on Tuesday. Then, on Thursday we have Kaitlin's teacher/parent conference and on Friday we have Nicholas' teacher/parent conference. This is going to be a busy week.

Well, take care and have a nice Easter. Until next time, thank you for stopping by and God bless.

Paul

Monday, April 2, 2007 1:19 PM CDT

Good afternoon!

Not much news to tell from the last report but a few things to share. On a sad note, an acquaintance of ours who lives in PA and who has MITO has died. She passed away on Friday. We never met Allison C. but I e-mailed her many times and even gave her areas of interest when she came to Boston to see the MITO doctor at NEMC. She sounded like she was a fighter to the end just like our Heather was. God bless you Allison and our deepest sympathy to Allison's family and friends.

Nick had a major anxiety attack/ temper tantrum last night as I was leaving for work. Nick and his sister were arguing over the computer so I told Nick he had to get off the computer because the computer was going in "time out". Yes, the computer! If you know Nick you'd know why...it's a long story. Anyways, I got a call from Heidi around 5:30 PM and he was still screaming/crying. He eventually fell asleep a little after 7 PM. Nick had this tantrum for 4-5 hours straight. This is the longest "event" for him in a long time. Normally when he gets anxious and has a panic attack it lasts maybe 10 minutes tops. A couple of thoughts why this happened is that he's on Prednisolone for a croupy cough. One of the side effects is a change in mood. This plus his anxiety disorder may have made things worse. We are making an appointment for Nick to see the pediatrician next week to do a quick neurological exam and possibly getting Nick in to see the neurologist. Nick was also complaining about his legs being "Numb"? Maybe the neurologist can change some of his Tourette meds around or maybe a pill to calm him down when he has these panic attacks. We shall see.

Nick's teachers want to meet with us next week because they feel that his concentration is getting worse. We've told his teachers every year that he regresses this time of year. I don't know what else we can do. We are trying to have him see the neurologist already. Maybe treat him as if he had ADHD (although he technically has an ADD diagnosis already by a psychologist)and do more of those strategies on top of having him near the teachers desk and sitting up close to the front (which I believe they are already doing). Maybe have a 1 on 1 paraprofessional from March to the end of the year since these tend to be the worse months for him. His symptoms may be worse just for the fact that this is the time when his behavior changes anyway; 2) he just finished taking the MCAS exams and he was stressed about taking those. However, I think he did fine on them (according to Nick) but he gets bent out of shape for the smallest things anyways.

Heidi has a slight temperature today so we are watching things with her. She may have a stomach bug or something so she is resting.

Until next time, we should be having a teacher/parent conference on Thursday for Katie. I look forward to this meeting. We love her teacher and she is improving so much with her reading. We are so proud of her. TTFN!

Thursday, March 29, 2007 9:41 PM CDT

Hello and thank you for checking in on us! I know it has been a while since our last update but we've been busy and there is plenty to try and update you about so here we go!

Heidi

Heidi is feeling a lot better now. Health wise she is doing a lot better. Her blood sugars are stable with D 50 bolus' whenever she is off her TPN or doing an extra activity. Her clots are shrinking and they actually decreased the dosage of her blood thinners. Heidi is now profoundly deaf and her hearing won't come back. It has progressed very quickly and is a shock to all of us. She got new hearing aids (and Masshealth paid for them)and they help her hear sounds but not words. She wants to learn sign language and is actually learning it very quickly. I am learning it too but she's a whiz at it. Heidi will also be starting speech to work on speech reading and to maintain her current speech (she can't hear her own voice when hearing aids are out). Tommorow we are going to Clarke School for the Deaf and looking at assistive devices. We'll see if anything catches our fancy!

Nicholas

Nicholas, Nicholas, where to begin???? Last week he had some bug and did a lot of vomiting. He got dehydrated very quickly and needed IV fluids. I took him to the ER and lets just say that that was an interesting time. We need to watch out for Nick because he is always on the edge of being dehydrated. It didn't surpise me that he got dehydrated so quickly. For the past several months he has been waking up with a croupy cough. Now, the cough is interrupting with his sleep. We still feel that it is reflux related. We saw the GI doctor today in Boston. We told him the medicine isn't working for the reflux so we are going to have a few visits within the next 3-8 weeks. In 3 weeks, he is having an endoscopy done to look at his throat and stomach. Then they are putting a tube down his nose and doing a PH probe to check and see how much of his reflux is acid related or something else. He can go home with the tube and monitor and then we need to go back the next day to return the monitor and to pull out the tube. In 8 weeks, he is having a gastric emptying test done to see how long his food takes to exit his stomach. The doctor is checking to see if he has gastroparesis. Once this is done, we will meet with the doctor to discuss our options. Lastly, he started his MCAS testing this week. I want to say he did well but I'm not sure. He claims they were easy but we'll see.

Kaitlin

Katie is blossoming in her reading. Boy, what a difference a year makes! We are so proud of her. You go Katie! We had a good IEP meeting for her and she has some learning disabilities that her teachers (and us) picked up on. I have a feeling that she will do well in school anyways.

Paul

Well, as for me I've been a little busy. I have begun to play basketball at my church on Thursday evenings. I have reduced my soda intake even though the nutritionist wants me to quit cold turkey. Ughhh! When I go shopping I don't buy soda but if I am out then I may splurge on a soda or two (or three, or four). My primary care physician wants me to go for a sleep test. I am having sleep issues that have been around since starting college. Just little things like falling asleep when I'm driving or falling asleep during the day at any moment. Only joking. I know, it sounds like sleep apnea or narcolepsy but the tests show otherwise. I know now that a lot of it is lack of sleep but it doesn't account for what happened when I was in college. My previous physician called my tiredness/sleepiness "Essential Hypersomnolence". This is a fancy way of saying, "I don't know why he's falling asleep but we'll treat him like he has narcolepsy." My sleep test is scheduled on Tuesday. On the bright side, at least I'll be getting fairly good sleep on Tuesday.

Well, I think that's it for now. I'll try (I promise) to update in a couple of days. Please keep all of our Caring bridge and Mito friends in your thoughts and prayers. Thank you and have a great evening!

Wednesday, February 28, 2007 8:53 PM CST

Hello dear friends and family!

Yes we are alive.....just very busy. It has been over a month since our last update and I have been spoken to by various people to update so thank you to all of you who keep after me! LOLOLOL!

To be honest, I don't know where to begin. Heidi is improving in regards to the massive blood clot that was in her chest. She had another CT and they said that it is "remarkably" better. She just got over a UTI but has had some headaches due to her sinus' filling up. Heidi will be getting her own hearing aids very soon. She has her molds and she just got her hearing tested today for the last time before she gets her hearing aids. We did meet with the gentleman last week from the Commission for the Deaf and Hard of Hearing. He was nice and offered several suggestions for Heidi.

Katie has been dealing with a nagging cough and she was on steroids for that. She's a lot better now but if she gets this nasty cough and/or pneumonia again she is seeing the pulmonologist.

Nick is being Nick. He makes us laugh and at the same time gets us frustrated because he doesn't eat very well. We are concerned about his height and so isn't the gastrointerologist. His PCP and the Endocrinologist are at a "wait and see" stage because he has grown (some) and has gained 2 lbs. in a year. His PCP feels that it isn't screaming Endocrine but to wait and see. His metabolism doctor in Boston wants to make sure that if he is put on something for his thyroid that he is given thyroid medicine and not hormones. Giving him hormones would force all his energy into growing and take it away from somewhere else. Nick saw the cardiologist today just to get a baseline and he did great. He has a II/VI systolic murmur (innocent murmur) but the doctor doesn't feel he needs to be medicated when he needs to go to the dentist. He even had an ECHO done and got a picture of his heart. He showed me the heart and he said, "Now daddy, do you see the four chambers in my heart?" I had to laugh. Maybe we'll have a future scientist or doctor in our midst? Other than that, Nick is Nick. OH! He got a new vest that is specially made in England and this is working wonders for his energy throughout the day. Before, he wore a Vinick vest and would take it off after 15 minutes because he got too hot in it. This new vest is light weight and he can wear it up to 8 hours in the day. So far so good. We'll have to see how he does in the spring and summer but for now he is doing great in it and has more energy. We call it his "Blue Power Suit". He is a totally different kid in this vest.

As for me, well, same old same old. As some of you may know, I have been dealing with some health issues of my own. I have been a type 2 diabetic since August of 2005. My diabetes isn't being controlled very well and am on 3 different pills and my triglycerides are high. I saw the Endocrinologist last week and I finally got my first glucometer. Yay for me. Not! We are checking for patterns to see when my blood sugars are up and then I'm seeing the dietician in mid-March. I've seen a dietician at our local hospital and she has given me some ideas on what to eat and drink. My problem is that during times of stress I eat! I don't cook properly and I get whatever is easiest, not what I'm supposed to eat. Heidi feels that I'll be taking the "L" word soon. I don't want to take Lantus but if I do then I'll have to suck up my fear about needles and just do it. I may need to go on insulin. I'm not happy about it but I may need to do it anyway. Maybe once I have a chance to eat right and exercise, maybe I can stay away from the "needle stuff".

Well, this is a book and it's getting late. Please keep us in your thoughts and prayers. I'm sure I missed some topics of discussion but I'm sure I'll be adding more soon.

Have a great day and I hope you have a better tomorrow.

Paul

Wednesday, February 28, 2007 8:53 PM CST

Tuesday, January 23, 2007 9:12 PM CST

Good evening!

Just a quick update to let everyone know that Heidi is.....HOME! She got home tonight just before 6 PM. It has been a long couple of weeks but she's doing better and we are very thankful for that.

She is tired this evening but during the day she is sounding like the Heidi of old. Her speech has been clear and is in good spirits (maybe because she's going home).

Heidi will need to gain her strength again for trying to walk with the walker but she is determined. Currently, she is going to be on blood thinners to help with the clots and this is a shot I guess. It is called Arixtra. In 6-8 weeks she will need to have another x-ray or CT scan to see how the clots are doing. Other than that, tons of appointments are coming up. In fact, she needs to go back to Boston on Thursday to see her new PCP at NEMC. She is going to be the "coordinator" of services for her so she wants to see her since she got discharged today.

Heidi will also see her pulmonologist in about a month to check on things. Along with the clots she had lung issues too. Aspiration pneumonia, pleural effusion, chest tube, etc. On a plus side, she is coughing more so it kind of makes you wonder how long she has been having issues with these clots and fluid building up around her lungs?????

Any how, we are glad that Heidi is home and hopefully our lives will get back to some normalcy. Heidi was going to meet someone from the MASS Commission for the Deaf and Hard of Hearing on Thursday. However, the PCP wants to see her that day so we are going to need to reschedule that appointment.

I guess that's it for now. Thank you for all your prayers during these past several weeks. Hopefully, things will be looking up from here and Heidi will be getting better really soon. Thank you for checking in on us. Until next time...

Thursday, January 18, 2007 10:33 AM CST

Hello all,

Thank you for visiting and I'm sorry I haven't been able to update. I had our laptop with me in Boston but we couldn't get it to work. I couldn't get internet access. Ughh!

Anyhoot! I am proud to say that Heidi is on the upswing now and is doing a lot better. A lot has changed since the last update so I will try to elaborate more.

The fluid that they "drained" was called Kyle. I guess it is part of the lymphatic system. I guess it is an important fluid (helps with the electrolites or something in that realm) so they didn't remove it totally. They took out 60 cc's of it to test it.

After they did the TPA drip, they re-did the CT scan and noticed her right lung had fluid around her right lung. Heidi began complaining of her right shoulder (just under the clavicle)hurting and they said they had to drain the fluid. Heidi got a chest tube put in and approximately 1000-1025 ml's of blood came out. They said that it is about a quart of blood that came out.

The biggest debate of the week came when it was time to pull her old line. They placed a brand new triple lumen in her groin on Monday and it comes out just above her waist line. On Tuesday they did a nuclear medicine test to see whether they could just pull the line. The fear was that pullling it could make her bleed out and that wouldn't have been good. On Wednesday, they pulled the line with no problems. They had to put pressure on the site for about 15 minutes but other than that she is doing better.

Currently, she is still in Boston but in the ICU. So for those of you who have the phone number from the previous post, ignore it. Heidi is not there. Ha Ha Ha! She technically doesn't have a phone but they can bring one in to her. It sounds like she will be in there over the weekend because we got new information later this morning. The new information is this... The doctors are going to have the chest tube to gravity for 24 hours and then they will remove it. Then they will observe Heidi for 24 hours and start her on a blood thinner like Coumadin. Once her levels are at a therapeutic level, then she can go home.

Other than that, Heidi is doing a 1000% better. It is truly amazing. We have been blessed that her pulmonologist was on service this week in the ICU.

As for the rest of us, Kaitlin has been having a nasty cough for about a week and complained on Monday or Tuesday that her ear hurt. I took her to her pediatrician today and said that she has "Walking Pneumonia". The doctor said that she heard rowl sounds in her right lower lobe. Katie will be on antibiotics for 5 days and on her Atrovent inhaler for her cough. She sees the pediatrician in a week.

Nick in general is doing fine. He's missing mommy very much but is adjusting pretty well. We did his homework this AM and all I can say is thank goodness we are able to adapt his way of doing homework. He had to write 10 sentences using 2 words from a spelling list in each sentence. Well, writing for NIck would mean an assignment like this would take close to an hour to do. I told him that he is using his brain and his mouth and I am going to be his hands. He looked up the spelling words and made up the sentences and I recorded it down for him. His assignment was done in under 10 minutes.

I am hanging in there. I'm tired, frustrated, and tired of being frustrated. I feel so bad for Heidi being in the hospital by herself and over 2 hours away. It is hard for me because Heidi wants me there and the kids want me home. I wish I could clone my body so it could be in two places at once. Everyone at work has been sick and I have been fortunate to not get sick. I woke up this AM though with a stuffy nose and a slight sore throat. I can't afford to get sick. Ughh!

Heidi, if you are able to read this, please know that I love you and I miss you. I am so happy that you are getting better and you're coming home sooner rather than later. You'll be back home soon so you can get all the hugs,love, and snuggle time you need and you richly deserve.

Until next time.

Paul

Tuesday, January 9, 2007 8:10 PM CST

Good evening!

As I write this journal entry I have good news and bad news. Heidi has been in the hospital since Friday and she has a bad case of aspiration pneumonia. She is slowly getting better from that thanks to the antibiotics that she is on (good thing).

However (here's the bad thing), her pulmonologist did a MRI of her lung because it didn't look like a typical aspiration pneumonia film. As it turns out, she has a blood clot around her central line by or in her lung (something like that). She has fluid in her lung that needs to be drained and the clot has to get smaller/thinner before they can pull the line.

Soooo.........tomorrow AM they are placing a tube in her right lung to drain the fluid. The doctor doesn't think that it will be all blood but we will see. He's hoping it is mostly all clear fluids. Then she will be re-admitted to the ICU so she can get a TPA drip to try and make the clot smaller and/or thinner. Once the clot is the right size/density or whatever, then they will pull her line and replace it with another one. How long this will take I do not know. I do know that I am calling out of work for tomorrow because Heidi is very anxious about the news and what is going to be happening to her tomorrow. It's a shame because she was starting to feel better and was breathing better. Knowing that she has a clot explains a few things like Maybe this is the reason why we can't draw off her lines? Also, this possibly explains why she has gone septic twice within the month.

I wanted to update quickly but there is more to say but I have to start getting things ready for tomorrow. I'll just say that the other thing I wanted to mention was about a "contract" they wanted Heidi to sign. I"ll explain more when I have a chance.

Her current phone number is 617-636-1422. Once she goes back to the ICU obviously this number will change. I will try and update later. Take care.

Paul

Friday, January 5, 2007 10:15 PM CST

During the day today I was thinking to myself. I was thinking, "Why do I update as often as I do because things change so fast that when I write something it is old news and something else has taken its place. It makes me look like a liar."

I know, what am I talking about. In a previous journal entry I said that it was a Christmas miracle that Heidi was home and was doing fairly well. Today, she ended up back in the hospital but this time she got transferred to NEMC in Boston.

Long story short, Heidi aspirated at some point during the night and had a slight fever. The doctors in Boston wanted her to go there so they could treat the aspiration and pull her line because she's been having issues with it since day one. At first we were going but Heidi looked aweful. I told metabolics that I wasn't comfortable driving her and that I was sending her to the local ER. She went there first and then was transferred to Boston early this evening.

They did x-rays and she does have aspiration pneumonia and sepsis. Heidi's right shoulder hurts her and I don't know if it is from laying on her shoulder wrong or what. I know one thing and that is she DIDN'T FALL! Her vitals are back to normal and is breathing a bit better than before. She is currently in the Medical ICU but will hopefully going to a floor that knows her (North 8).

I'll keep everyone updated but this is what I have now. I hope to talk to Heidi tomorrow and visit her either Sunday or Monday. Talk to you all soon. Please keep praying for Heidi and for our family.

Paul

Monday, January 1, 2007 10:45 AM CST

HAPPY NEW YEAR!

It doesn't seem possible another year has passed. We had a wonderful miracle happen in that Heidi was able to come home for Christmas and she is still home! Yay!!!! Nicky and Katie were very happy that she was able to come home. If you haven't guessed, they missed their mommy.

The holidays were sad yet again because of missing our beautiful angel, Heather. It was hard looking at flyers and seeing various toys that we knew Heather would like. For example, one store had an Elmo chair that vibrated when you sat in it. I saw it and said to myself, "Heather would love this!" Unfortunately, reality hit and then I got teary-eyed. Sometimes it feels like yesterday that she passed but it has been 15 months. Some things get easier but we will always miss our Petunia. We love you Heather!

This is an aweful disease and I hope and pray that the New Year finds better treatment and/or a step closer to a cure for this disease. Within the past few weeks there have been at least 3 children that have died from mitochondrial disease. Please pray for their families during this difficult time.

We are so blessed for all the help from friends, our church family, and our extended family. Without your support, this past year would have been unbearable. I wish I could say that your services won't be needed this year but as most of us know, this disease is a progressive one. I do pray that Heidi's visits to the hospital are less than they were this past year but they seem to be more frequent lately. We'll try and stay positive and hope for more stays at home. Also, we'll need to watch out for Nick as he also has a diagnosis of mitochonrial disease. Granted, his symptoms are much, much, less that Heidi's but we still need to keep an eye on him. In regards to Kaitlin, she shows so symptoms but is presumed to carry the gene. We will need to watch everyone but she is at the bottom of the totum pole (so to speak)for health concerns. As for me, I will need to take better care of myself. I am overweight and with the stress of Heather passing away and Heidi being sick I don't eat well. Plus, since Heidi doesn't eat I make whatever is easiest. Furthermore, I am a type-2 diabetic and need to watch out for my blood sugars. I see an endocrinologist in January to discuss things.

Well, I think I will end this here. Kaitlin is saying that she's hungry so I'll need to get the kids some lunch. Please keep our family in your thoughts and prayers. Also, please pray for all our friends who are sick or in the hospital. Pray that they get better soon and can have a healthier New Year. Lastly, please continue to pray for Malisa who is in a rehab hospital in PA. She continues to improve slowly but surely so pray that things continue to improve and her spirits remain positive. Keep up the good work Malisa! Until next time....Happy New Year! God bless you all.

Monday, December 25, 2006 9:58 PM CST

Hello everyone and Happy Holidays! I hope all our friends who celebrated Hannukah and Christmas had a wonderul holiday and enjoyed being with their families.

We had a prayer answered this Christmas and it was having Heidi home from the hospital. It was nothing short of a miracle but she's home. She came home on Saturday early afternoon and she's been ok.

In a nutshell, her magnesium and potassium and phosphorus have gotten a lot better. They aren't low like 0.5 for magnesium and 0.6 for potassium like they were when she first went in. Heidi also got 2 units of blood while she was there and she felt a lot better after getting that. Heidi's main issues right now is respiratory. She needs to be on 3 liters of O2 and when not on O2 she is on her bipap machine (with O2 too). We can't remember the name of the infection they found but it is one of the "grandmamas" of infections that you get when you stay in places like hospitals. She had/has a nasty UTI. Heidi is still tired and has done too much since she's been home (what else is new). She can frustrate me at times but am glad that she's home now.

Nick and Katie had a good Christmas. Apparently, they were up at 5 AM wanting to open presents but I told them the other day not to wake me up until after 7 AM. I was so proud of them, they didn't wake me up. From what I was told, they checked out whose gifts were whose and right at 7:01 AM, my daughter comes in yelling, "Daddy, daddy, Santa came get up!" I said what time is it and she told me that it was 7:01 AM. FYI- the reason I told them not to wake me up until after 7 was because I worked from 3-11 that night and I didn't get home until a little after 12 AM and by the time I checked everything out and made room for the Christmas gifts it was 1:30 AM.

Thank you to "Santa" and to our local newspaper and a toy fund in our town for helping with our gifts this year. As always, thank you to Heidi's PCA's, our families, and our friends from church who have helped us out during various times of the year.

Please pray for a lot of our friends who are sick, hospitalized, grieving the loss of a child, or just having issues in general. God knows who they are but they all could use some prayers right now.

Lastly, have a Happy New Year and I hope that everyone has a safe and healthier 2007. I know I don't usually do this but would like to end this Christmas day with a passage from the Bible. It is Luke 2:6-7 "While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.

Praise God for having Mary give birth to our Lord and Savior Jesus Christ. Happy Birthday Jesus! Amen.

Paul

Thursday, December 21, 2006 9:11 AM CST

Heidi is back in the hospital again. She got out last week sometime and finished up the antibiotics on Sunday or Monday. I went to work MOnday night and when I came home Heidi checked her temperature. Her temperature was 104 F
so we sent her to the hospital. She's at our local hospital again and in the ICU.

Before I say what her plans are I am visiting her in a little while and will do a complete update later on. There is some confusion to what exactly is going on. First they say it is the line and yesterday they said it may be a UTI.??????? I don't know for sure. I'll let everyone know later on today.

We aren't sure if Heidi will be out for Christmas or if she'll be transferred to Boston. Time will tell but it's not looking good for coming home on Christmas. We could use a little miracle. Talk to everyone soon.

Paul

Thursday, December 7, 2006 0:16 AM CST

First of all, I am so sorry for not updating sooner because I know a lot of you are concerned about my loving wife. Heidi continues to be in our local hospital and overall she has gotten good care there. Her blood pressure finally became normal again the other day but today it was too high. They are saying that she has aspiration pneumonia and is septic. She has a nice bug flowing in her veins (interacoccous). She is on 4 antibiotics and I can name 3 of them. She is on Vancomycin, gentamycin, and Flagyl. I can't think of the other one.

I found out the other day that the doctors were contemplating putting a tube in her to help her breathe. Her respirations were oughful. She's been having a hard time with breathing during this hospitalization. She wants to address her pulmonology stuff with her pulmonologist.

If she continues to improve, she may be able to go home on Friday. We shall see.

Nick saw the Endocrinologist today at Baystate. His GI in Boston wanted him to see an Endo. sooner rather than later. Nick has hypothyroidism and his TSH levels are always high. We are going Saturday AM to do labs. Oh fun, fun, fun. He did a bone age scan this afternoon just to look at it. Before he does anything like he wants to see labs. I was kind of upset at the Endo. doctor in Boston because I asked for his records to be sent and they weren't.

Well, that's it for now. I'm falling asleep as I'm typing this TTFN.

Monday, December 4, 2006 8:07 AM CST

Good morning.

Well, it was Nick's birthday yesterday but we weren't able to celebrate it too much. Nick got some gifts from my parents, his Auntie Holly, and his Mimay but we weren't able to celebrate with them because Heidi ended up in the hospital yesterday.

Why in the hospital? Good question. Heidi started some "cold-like" symptoms a few days ago and Saturday night/Sunday AM she got the chills and a fever. We started her on normal saline and gave her tylenol. We called the metabolic doctor on call in Boston and said she sounded stable enough to be home and re-evaluate in the AM.

We did and her temperature was still quite high and she had the chills and was sleeping more. I took her to the local hospital where they drew labs and did a chest x-ray. They said her labs in general didn't look too bad except her CRP was elevated and she had a left differencial shirt with her white blood count (or something like that). Here x-ray showed some markings in her lower (Right?)lobe which may be aspiration pneumonia.

The doctors admitted her last night because of her high fevers and low blood pressure. Heidi is needing to be on her bipap machine because her breathing is impaired and is on oxygen. They have her on Levoquin and Flagyl for the infection and pneumonia. They admitted Heidi in ICU.

Update from this AM is they think something else is going on because they feel she's too sick to be having just aspiration pneumonia. Her BP is still low and she has a headache. This is all I know for now.

Please keep Heidi in your prayers. Pray that the doctors can figure things out and if not, transfer her to NEMC so the metabolic doctors can help out more. Personally I prefer her to be here locally. As the NP from the metabolic clinic told me this AM, do you want her hospitalized locally or go somewhere where she'll get better care. Laughingly, I said both. It would be nice that Heidi can stay here locally and they communicate with the doctors in Boston. We'll have to wait and see.

I'll update more when I have a chance and I have more information.

Paul

Saturday, November 25, 2006 7:55 AM CST

Good morning!

First of all, I wanted to say I hope everyone had a nice Thanksgiving on Thursday. My mother-in-law came over and my aunt and her husband came over with their 2 children (teenagers). Also, my sister-in-law came over and we watched the Dolphins beat the Lions on tv. We had a nice meal and it was nice to see everyone again. My parents weren't able to come up but they came up last weekend. My brother went down to the Cape and visited them for Thanksgiving.

There are many things to be thankful for this holiday season but then there are many things that I can say that I am not thankful for. However, I truly feel that there are more things to be thankful for (despite what we've gone through this past year or so) and I'd like to share a few of them with you.

I am thankful for my wife and family as they put up with me not being home and for having various people in the house when I'm not home. Also, I'm thankful the kids are putting up with me in regards to my cooking. Sorry kids!

We are so thankful for the support from all of our family and friends. This includes our tremendous church family, Heidi's PCA's, and all of our caringbridge and mito families.

We are thankful for people who will listen to our needs/problems/whining because we have to let them out once in a while.

We are thankful for the doctors who help treat Heidi and Nicholas and offering their support and checking for their well-being.

Last but not least, I am THANKFUL that despite all the hard times we have had over the year, I haven't lost my faith in God. In fact, I think it has grown over this past year.

Knowing that Heather is in a better place and is free from tubes and pain makes me so thankful (don't mean to over use the word)and happy for her. We miss her SO much here on Earth but we will see each other again in Heaven.

Sorry we haven't posted pictures of Heather's stone yet. I hope to have them up soon.

Please pray for all our caringbridge families who are ill or hospitalized right now. Heidi has been doing pretty well and same with Nick. Heidi is on a new CO-Q10 and it is working really well. However, it causes cramping which she doesn't like. Like Heidi says, she loves it and hates it all at the same time.

Also, please pray for our friends Alyson, Heather, Malisa, Ann-Marie, Donna, and Tim as they are all either hospitalized or not feeling well for various reasons. Please pray that they all feel better soon and for knowledge and wisdom from their doctors and nurses.

Last but not least, please pray for the Kurtz family as they celebrate Eli's passing a year ago today. This is an amazing family and they help out many children who have mitochondrial and metabolic diseases through their organization "Eli's Angels". Thank you for listening and sorry for the book. I guess I am thankful for a lot of things. Talk to you soon.

Paul

Friday, November 10, 2006 9:28 PM CST

Hello to all our friends and family;

I know it has been a while since our last update and a lot has happened since then. However, I am not going to go into a lot of detail but to say that Heidi's last admission wasn't a good one and wasn't up there for the "10 Best Admissions" Award.

What I will say is that they admitted Heidi because of her chronic fatigue and the fact she fell asleep and couldn't be aroused when we brought Nick to a doctors appointment in Boston. Long story short, she was having a reaction to one of her medicines that was making her sleep all the time. The doctors took her off it and is doing fine.

Heidi has a severe hearing loss and is waiting for new hearing aids. We are waiting to see whether Masshealth will pay them or not. Also, the doctors don't want to treat Heidi's UTI's unless she has other symptoms like a temperature or has seizures, etc. They say she is colonized (e-coli I believe)and is running out of good options for antibiotics. Furthermore, the doctors are saying her lungs are getting worse and is retaining CO2. They want her to use the Bi-pap more when lying down and when she's asleep. The hard part is actually keeping the mask on her face. She takes it off at a drop of a hat and she does it in her sleep. It is amazing!

The kids had fun on Halloween. Katie was Belle again this year and Nick was a "Cat". This is Nick's new topic of interest. They had a lot of fun going "Trick or Treat".

We had Nick's IEP meeting the other day and overall we thought it went well. We have a new special education coordinator because the other one retired. She seems really nice and supportive. On a scale of 1-10 we gave the meeting an 8.5. Staff had to leave during the meeting and we had to rush at the end to finish things off. The teachers all love Nick and he's doing great in school.

Today I brought Nick to Boston for a GI appointment. Surprisingly, Nick has gained some weight and the doctor isn't as concerned about his weight as we are. He's around the 15th percentile for weight and if he was at 5 percent then he would be worried. We are trying to get him the Carnation Instant Breakfast for Juniors to see how he does with that. He tried it in the doctors office and drank the whole thing. He still refuses to drink the Boost Breeze substitute.

The GI doctor is concerned about his height. He hasn't grown as much as he had hoped and wants him to see an endocrinologist. He already has hypothyroidism but the endocrinologist that is seeing him hasn't wanted to treat it and just "watch it". We may find a local endocrinologist to take on the case. It will save on the trips to Boston and will save my sanity. Ha Ha.

According to Heidi, she is "DOWN" because a lot of her symptoms she thought would have been better by now haven't.
Furthermore, she is missing Heather more than ever.

We are still waiting for finalities about the addition to the house. The guy hasn't returned my phone call so I will try him tomorrow. We are trying to get extra funds to help with the cost of a handicap shower/bath and some accessories.

To finish off my book, Heidi would like to talk to other adults who are going through some of the same things she is going through. She really could use your support. Please e-mail her if you have the chance.

On a final note, Heidi and Nick were snuggling when Nick told Heidi that "Heather is happy!" Heidi said, "How do you know she's happy?" Nick's response was, "Because I talk to her." Nick continues to boggle our minds because ever since Heather passed away, he does not talk to us about Heather. I guess it shows that he is more capable of being aware of things than we thought. He is a sensitive guy (kind of like his old man)and I am so happy that he was able to tell us that. He says he talks to her in his dreams. I told Heidi that Heather is talking to him in his dreams because he is sleeping in her bed and she wants him to get out of it. Heidi chuckled a little. It has been an emotional day.

Thanks for listening. Please keep all of our friends who are sick right now in your thoughts and prayers. There are so many,unfortunately, so I don't want to leave anyone out. Please pray for speedy recoveries and wisdom for all the doctors and nurses. Thank you. Until next time.

Tuesday, October 17, 2006 10:08 PM CDT

Hello,

Sorry for the long wait for an update but it's been a little crazy here.

Let's see....where to begin? Heidi is home from the hospital and they did decide to remove the central line and put in a new one. They finally pulled the line on Wednesday of that week that she was admitted and put a new line in on Friday. She came home on Saturday.

Ever since she came home Heidi hasn't been acting totally right. She's been complaining of her left side of her body being sore especially her left hip. She has started back on the dilaudid as well as the pain patch. She has been on the patch for a while but the doctor prescribed it a little less.

Heidi is doing something new now and that is sleeping the majority of the day/night. She has been sleeping close to 20-22 hours a day. There are many thoughts to why this may be happening. Who knows which is the right answer or not..I don't know. It may be one reason or it could be all the reasons. Either way, a lot of theories but nothing has been done to substantiate these theories.

Here are some thoughts....
1) Heidi switched to liquid Keppra again for her seizures and we think she is actually absorbing it now so she is getting sleepier now. The doctors increased her to 3 times a day vs. 2 times a day.
2) Heidi has had a stuffy nose for about a week now and she thinks she may have an sinus infection. (I think I gave her a cold because I still have a stuffy/runny nose and have had it for a week).
3) Since Heidi hasn't used her bipap for a while due to her stuffy nose, she thought that maybe her CO2 is too high (I think that's right?).
4) The nurses at the VNA feel that the amount of pain meds Heidi is taking may be causing her to be more sleepy than usual. Ever since the new central line, she has had muscle pain on her left sign and has now gone to her right hip too. We don't know why this is happening.

So these are the thoughts for now. We struck out going to the GI doctor last week because he cancelled on us. We were supposed to go to Boston today but the doctor called and cancelled us today due to a family emergency. Both appointments have been rescheduled but it is very frustrating.

It's getting late so I'm going to get going now. Until next time...take care and God bless.

Paul

Tuesday, October 17, 2006 10:08 PM CDT

Tuesday, October 3, 2006 9:52 PM CDT

Hello everyone!

It's been several weeks since our last update so I'll get to the point. Heidi is currently at NEMC waiting for the doctors to decide whether to change her line or not. Infectious disease and metabolism want the line to get changed but surgery says to just "fix" the line. She has a small hole in her central line. We went to Boston on Monday and as of tonight, they are still deliberating. They did blood cultures but haven't heard anything yet. Heidi has had a nasty rash around her central line and it is now puffy at the insertion site. We shall see.

The gentleman from the memorial place called and said that Heather's stone is up at the cemetery. I was surprised because he was telling me mid October but it is there. It came out nice and I am happy with it. We'll take a picture of it and if it is ok with Heidi will put it in with the photos so you can see it.

Nick hasn't been eating and drinking very well. Every since Boost Breeze went off the market he hasn't been drinking very well. He's been more tired than normal and he looked dehydrated the other day. Metabolism looked at him on Monday while Heidi was there and they did a urinalysis. It looked ok but I think it's because we have everyone telling him to drink. We have to be constantly on him to eat and drink now. If it was up to him, he'd play computer or read books all day and not eat or drink. He sees GI next Thursday so we'll see what they say.

Other than that, this is a brief update. It was a hard couple of weeks with Heather's anniversary of her death and her birthday was supposed to be on Sept. 25th. Work has been crazy as usual for me and I work tomorrow night.

Please keep our family in your thoughts and prayers. The kids missed school today because we stayed overnight at a hotel near the hospital. When I get more information about Heidi or anything else I'll update everyone. Have a great evening!

Paul

Saturday, September 16, 2006 11:41 PM CDT

Good morning!

I am writing a quick update because it's late and I wanted to say hi and thank everyone for thinking of us today as it was the one year anniversary of Heather going to Heaven.

Heather was on our minds a lot lately (especially today). Yesterday, the kids were fooling around and Heidi asked me, "Do you think Heather would be in the middle of that?" I told her I sure do. Heather liked to cause mischief and totally would have been in the mix or even have started something up with her brother and sister. Heather liked to cause trouble! lololol She was a little stinker.

We are all set with the gravestone and they are in the process of engraving it. In a couple of weeks they will put the foundation in and then by mid-October they will put it in. It should look nice.

Heidi never made it to Boston last week. She wasn't feeling well that AM so we cancelled her appointment. She has a UTI and this is causing her blood sugars to stay low. She's going this Wednesday to get molds of her ears for the hearing aides. She is also going to see GI I guess to replace the G-tube. They are still clueless in regards to a mickey J-tube. We are going to bring them pictures of it to show them eventhough it is the same pictures that we got from a website that Heidi sent them. Ughh!

We will be walking in the Mito-What walk on October 8th in Longmeadow, MA. We have been slow in getting donations but hopefully we'll get some. I hope it will be a nice day.

Please pray for our friends who are ill at home or in the hospital. Pray for our friends Heather, Alyson, Allison, Kristina, and the Thorell family as they are dealing with a few issues medically. Have a great day and thank you for checking in on us and keeping us in your thoughts and prayers.

Paul

Thursday, September 7, 2006 8:16 PM CDT

Hello everyone!

Sorry I haven't updated in a while. The kids went back to school on Tuesday, Sept. 5, 2006. It's hard to believe that Nick is going into 3rd grade and Kaitlin is going into 2nd. So far they are enjoying school and we are happy with their teachers.

Kaitlin wants to do dance classes again and both kids are doing the AWANA group again at church. Nick will be going back to Music Therapy in another week. He loves music therapy and it is for kids who are on the autism spectrum. His group are for kids who are higher functioning or have Aspergers. Nick has Aspergers.

Heidi had an appointment in Boston last Thursday and her hearing has gotten worse even from a month or so ago. She has an amplifier that helps her hearing and she likes it. She's hearing sounds that she hasn't heard in a long time. She said that it's limited and she can't turn the high frequencies up as high as she would like. Her hearing is a severe sensory-neuro hearing loss and she qualifies for cochlear implants although she is trying hearing aides first.

Heidi still needs new tubes for both the G and the J. Her GI doctor at NEMC isn't trying very hard to find her a new one and has even said, "Do they even make a Mickey J-tube?" He wants Heidi to have the J tube pulled and just stay on the TPN. His mentality is she hasn't had much luck with it so why have it. Besides, she'll be on TPN the rest of her life anyways. Can you say, WE AREN'T HAPPY!

Heidi is going to see the GI doctor that knows about Mito at Mass General and will keep the one at NEMC for procedures. The doctor in Mass General seems to want to work with Heidi and it seems as though he supports her in her feelings and wants her to have the best quality of life possible. We are still waiting to hear from GI at NEMC about the new tubes.

Nick saw the physiatrist on last Thursday too. His appointment was LONGGGGGGGGGGGGG but as usual it was worth it. They made new casts of his feet and he'll get new DAFO's in November. We are going to try and have Nick wear the Vinick vest when sitting at the computer to help him sit straighter. We also had him use the convaid stroller when going to the appointment and he liked it. He looked better and acted better and not as "washed out" as he usually does. He even ate supper on the way home and didn't even through up or have a migraine.

We got a call tonight to say that the draft for Heather/our gravestone is done and we can come and see it. If we like it then he'll start the engraving process. He hopes to put it in by mid to late October. I think it will look nice overall.

It doesn't seem possible that the one year anniversary of Heather's death is coming up. It still is weird being a family of 4 when both Heidi and I feel we are a family of 5 still. Kaitlin is listening to Elmos cd's and playing with one of Heather's old Elmo dolls. We think this is her way of remembering Heather. Nick doesn't usually talk about Heather but he said Heather was in a bad dream of his. It had something to do about cats. I guess he ran out of his room crying and slept with Heidi one night when I was at work. I feel bad for Nick. He doesn't say much about Heather but I'm glad he talked a little about it with Heidi that evening.

Heidi continues to make some of her PCA's nervous. When she gets very fatigued she doesn't seem to be too "with it". Normally when she gets this way she either, 1) has low O2 Sats, 2) her blood sugar is low, 3) she's very fatigued, 4) she has a nasty infection and it came on quickly. Another possible theory is that she may be having atypical seizures. There may be a correlation between low blood sugars and these instigating a seizure. We are getting this checked out at the beginning of October.

Well, thanks for listening. Sorry for the book. Please keep our friends who have Mito or that have a Caringbridge page in your thougths and prayers. Many are sick or struggling right now. Have a great evening and please sign the guestbook. Until next time!

Paul

Friday, August 25, 2006 10:02 AM CDT

Good morning!

It's a rainy Friday here in Western MA. I work tonight so I wanted to try and get as much stuff as I can done before I left.

Heidi is still home (Yay!) but is feeling kind of off. She has a nasty rash around her central line entrance and it is very itchy and it hurts. She saw the nurse practioner and a "rash specialist" at her PCP's office and they both felt that it was contact dermatitis. Heidi hasn't used anything new so if it is caused by the tegaderm, why doesn't she have a rash on her arm because she has a tegaderm there too? The VNA did labs and cultures of her line so we'll see what they show. The PCP's office did a culture of her g-tube but felt it wasn't necessary to do a culture from her line. We told them the VNA already did it anyways.

The kids are done with camp now and now we'll wait until next year. The kids start school on September 5th. We are looking forward to school starting. Sorry Nicky and Katie!

I had a training at work but it was one of those things where they put posterboards up in the dining room and I had to read them and do little quizes ( T or F or Yes or No). I brought Nicky and Katie along because Heidi was sleeping and we were going to the store to get some groceries. The kids behaved really well and even helped me with some of the answers to the quizes. Lolol. They were good with fire safety questions and Katie thought the fake butt (sorry, no other way to say it)was hilarious. It was rubber and Katie kept on poking it and looking at all the different sores and "boo-boos" it had on it. She had one of the nursing supervisors laughing. Go Katie! She's our nurse in training at home. She helps mommy out a lot.

Some good news, Heidi's contracture is doing better. It gets better every day. She is almost into her old splint again. If she continues to improve, she may need to only wear the dynasplint at bedtime. This splint is amazing!

I did the finishing touches on the gravestone for Heather/us. We put down a deposit and in 2 weeks he'll show us blueprints of what the stone will look like. If we like it then he'll proceed to the cutting/engraving stage. If we want to change something then we can change it and then they can proceed from there. We are going to put Elmo onto the stone next to Heather's name. I think it will look nice. I hope Heidi likes everything on the stone. Heidi didn't come with me to pick out the flowers she wanted on it or the hands and cross. She told me she didn't want roses and she wanted childs hands holding a plain cross. The outline of Elmo is going to be engraved into the stone and it will be shiny/glossy (the stone will be that way anyways). The stone is going to be red so the guy thought that the outline of Elmo would look really nice on it. If everything goes to plan, the headstone could be put into the ground in mid-late October. I hope this gets done in October.

Well, that's it for now. Please pray for all of our Caringbridge families and to all our Mitochondrial Disease friends and families. There are several who are sick and/or in the hospital. There are many that need prayers right now but I don't want to leave anyone out so do a general prayer for all of our sick friends and their families. Thank you!

Until next time! Please sign our guestbook. We love to see who is checking in with us. TTFN! Keep Frogging!

Friday, August 18, 2006 9:29 PM CDT

Hello,

Just a quick update. According to the PT, he sees some improvement in regards to Heidi's left ankle contracture. We were happy to hear about that so the splint is working. She also has an elbow one and a hand/wrist one. She wears the wrist one on occasion and the elbow one she hasn't yet. The main concern is her left ankle.

Heidi's blood sugars have been going crazy and of course it is the weekend. Her blood sugar went as low into the 30's and have been near the 150's the rest of the time. Heidi was sleeping most of the day and was quite out of it. So, I went through the check list in my head and checked her O2 (which was 97 on room air)so this isn't causing her to be "loopy". When she checked her Blood sugar this afternoon it was around 150 so it wasn't that. So we have concluded a few things.

1) Heidi's CRP is up so we know she has an infection somewhere. The question is where????

Our thoughts are this:

A) she has an UTI
B) she has a line infection
C) since her g-tube is still draining the fresh blood maybe she has an infection in her stomach which has translocated to her central line/ or bladder (if that's possible?).

Anyways, Heidi wants to wait to Monday to do labs and cultures from the line and urine and hopefully we can find out what's going on.

Other than that, Heidi is really happy to be home. Katie enjoyed girl scout camp and wants to go back next year. Nick enjoyed staying home this summer and not going to any camps except the Bible camp that was near our house.

Our kids start school on September 5, 2006. It's a bit later than some of the other school districts. Nick goes into third grade and Katie goes into second. I'm going to need to go to Nick's PCP to have her sign the paper for him to have his epi-pen at school.

Well, that's it for now. Thank you for checking in on us. Please keep our friends who are ill right now in your prayers: Samantha and Alyson. There may be others so if I missed you I'm sorry. I hope everyone is doing well and thanks for stopping by. If you have a chance please sign the guestbook. TTFN.

Paul

Thursday, August 10, 2006 8:10 PM CDT

Hello,

Great news! Heidi is home now! She is happy to be home and is feeling a lot better.

Heidi said that after the surgery she would expect to feel the pain still but it isn't there. She is so happy the pain is gone. She looks and acts like a different person. It's amazing how one can feel when they are pain free.

However, with all the good news there is some bad. Heidi's left foot has a contracture which is pretty severe I guess. She is in a fancy splint (dynasplint) but if this doesn't work then she needs to go to more "drastic" measures. The next step is an actual cast on her foot, if this doesn't work then botox injection, and last but not least, surgery to loosen the tendon. We hope things get better just with options one and or two. She has splints on her elbow and wrist too but the foot is the worst.

Heidi continues to have blood clots in her g-tube and she really wants to get this addressed rather than wait for her blood labs to drop. She is possibly changing GI's again and going to a doctor at Mass General who deals a lot with Mito patients. He was Heather's doctor and is Nick's doctor as well. She will now need to address the j-tube because this is causing problems too. It stopped working at Spaulding for a day or so and then all of a sudden it started working again. The thought is it was either kinked or her muscles are spasming in her intestines and blocking her tube from working. We will need to address this too. I guess the doctors increased her Ativan because Heidi was getting anti-seizure meds through the j-tube but they can give her the Ativan through the IV.

Furthermore, (yes there is more) Heidi is considered non-mobile which is frustrating. Spaulding couldn't work on walking because of the contracture so this will have to wait. Once the contracture can get fixed so her foot can go past 90 degrees, then hopefully she can work on walking.

Heidi also borrowed an amplifier while at Spaulding and has noticed how much she is not hearing. It was an eye opener and we will need to look into this more at home. We found it amazing that our insurance will pay for a cochlear implant but they won't pay for hearing aids. Go figure.

Katie comes home from camp tomorrow. She enjoyed camp last week and she wanted to go again. Fortunately there was an opening for her this week. Heidi can't wait to see her. Katie doesn't know that Heidi is home yet. SURPRISE!

Nick likes staying home and playing on the computer. He can be so funny at times. He is one amazing little boy.

For me it is same old same old. I need to get our Saturn checked out so we can drive it again. Also, both cars need oil changes and the van need to get inspected. Does my fun ever end?

Take care and we'll talk to you later. We just wanted to let you all know that Heidi is now home from Spaulding. As always, thank you for checking in on us and keeping us in your thoughts and prayers. We do appreciate it. Until next time!

Paul

Tuesday, August 8, 2006 9:19 PM CDT

Good evening!

I am writing to let everyone know that I saw Heidi today and she said that she is probably coming home on Thursday. At this point, her doctors and therapists at Spaulding feel there isn't much more that they can do with her since she has contractures in her feet and can't walk very well because of it. The therapists can't do PT if she can't walk and Heidi is able now to transfer to the commode from the bed.

Heidi's j-tube got blocked for a day or so and they couldn't get it working. I wish I could say that they made a decision to fix it but they didn't. However, her j-tube just started to work today for some reason. They think it was kinked inside. The case coordinator at Spaulding called Heidi's PCP to have them organize her to get the new j-tube (hopefully a mickey button)over at our local hospital but they told the case worker that they'd prefer NEMC to do the call. I guess looking for a new PCP may be in order. Ughh!

Heidi got fitted for some new splints for her feet, elbow, and wrist. All on her left side. They are called Dynasplints (or is it dyno?). They are high tech and they have metal parts to them. Hopefully, these splints will help with her contractures and her muscles won't be as stiff.

Katie made it to camp again this week. She seemed excited and the camp said that they had a space for her so we were excited too. Nick has been enjoying his computer and I have to work tomorrow night and Friday night.

Other than that, that's all I have to say for tonight. The humidity is down so even though we are near 90 it doesn't feel it. Heidi is looking good and actually looks fairly healthy. She is a different person now without the gall bladder. It's hard to describe but what a difference it makes when you're not in pain all the time.

Well, talk to you all later. Thank you for checking in on us and God bless.

Paul

Friday, August 4, 2006 9:46 PM CDT

Hello. This is Paul again. Just a quick update that Heidi almost freaked me out tonight. Well, ok, got me nervous. I called her on the phone when I got back from picking Katie up from camp. She sounded really out of it and sounded very lethargic. She was hard to understand and I had to keep raising my voice in order to stimulate some conversation from her. It reminded me of when she sounded the same way at home and I called 911 on her and she went to our local ER. She had a UTI and her blood sugar dropped to around 80. She didn't remember a thing until about a day or so later.

Well, I called Spaulding a little after 10 PM to check on her because I had a list of things to check on and some questions. I heard some puzzling things from Heidi earlier in the day and wante to check on them. For example, they wanted to cut her fluids dramatically because they felt she was on too much fluids. Heidi refused this request so nothing has changed in this regards. I told Heidi that if they want to change her fluids then they need to call metabolics at NEMC and run it by them. There is a reason why she is on so much fluids so if they have any questions then they need to call NEMC.

In regards to my worrying this evening, it turns out that Heidi heard that I called and she called me back at 10:20 PM. She sounded a lot better and said that her blood sugar did get low but it was the case where she is getting lipids in her TPN and it was the end of the bag. For some reason, her blood sugar is dropping before the "switch over" so this is one of the reasons why she is just doing lipids one day a week at home. She is going to chat with the doctors tomorrow about this.

Also, she thinks she has another UTI again. Earlier in the day she was telling me she had a hard time peeing and for the first time in a LONG time she said that it hurt when she urinated. They did a culture this AM so we'll see if it grows anything. Apparently, if anything starts growing they are going to treat the UTI. Both Heidi and I feel it's the same bug she's had since April and will need to be put on the ertapenim (Invantz).

Other than this, Heidi looked great the other day and it was so nice to see her smiling again and in a great mood. She said that they hope that this will be a short stay for her too and are hoping it will be 10-14 days the most. We will see.

Take care and thank you for checking in on us. Talk to you soon, I hope.

Paul

Wednesday, August 2, 2006 8:01 PM CDT

Hello everyone!

I am enjoying the quiet of an almost empty home right now. Heidi is still in Boston but has moved on with her life and is now at Spaulding Rehabilitation in Boston. Kaitlin is at Girl Scout Camp and I dropped her off a little after 3 PM. It's just Nicholas and I but he's in bed right now so it is nice and quiet. Ahhhhhhhhhh.

Heidi made it over to Spaulding today around 5 PM. Her new phone number is 617-573-7215 and she is in room 309. I guess she is on the neurological unit but it is split both on the 3rd and 4th floors. She is obviously on the 3rd floor. She is already stressed because the doctor is questioning her fluid intake. She says she's getting too much. Also, Heidi is off TPN now and is on D10 (I believe). I am going up tomorrow with Nick and we are bringing the rest of the house to her. Only joking! I have several things that she wants and I'm waiting for tomorrow AM to find out when she has PT and if she needs me to bring up any of her medicine because they don't have it. I hope they fix the TPN issue tomorrow.

We are hoping that Katie enjoys camp. She is in a mood where she wants to wear jeans all the time. Even today! The child is crazy! Ever since she fell at the last camp and cut her leg, she has been wearing long pants. The nurse at the camp called me today and said she saw the cut and we have nothing to worry about. It's a small cut now but she thinks Katie is doing this because of a control issue. Maybe the only way for Katie to learn is for her to get a needle stuck in her arm because of dehydration or heat stroke. Trust me, I don't want this to happen but she doesn't listen to us so maybe she needs something to happen to her in order to open her eyes. I don't know.?

Nick did ok today being outside. I gave him water to drink in the car and some fan/mist thing to keep him cool. He wore a cute Disney hat and he walked pretty much in the shade at the camp. I asked him if he wanted to go in his convaid stroller and he thought about it and said, "No, I think I will walk."

Other than that, I'm off until Saturday and am going to Boston tomorrow to bring things up for Heidi. Hopefully we can time it so when we get there she will be in her room and not in PT or OT.

Oh I almost forgot, GI told Heidi she had to make an appt. in the clinic in order to get the Mickey-button placed. Apparently, "they don't do them at the bedside". Oh well, take care and thank you for signing our guestbook. Also, feel free to contact Heidi. I'm sure she'd love to hear familiar faces. Until next time!

Paul

Sunday, July 30, 2006 8:49 PM CDT

Good evening!

It was a beautiful yet warm/hot day again today in Massachusetts. Tonight the Red Sox are playing however I have no idea who's winning because I'm doing a bunch of things at once now so I'm not paying attention to it.

Heidi is doing a lot better. I can't remember if I mentioned this in the last entry but Heidi has a line infection. Fortunately, it is a bug that they can treat through the line and with IV antibiotics (vancomycin). For those that are curious she has Staph Epi (sorry for any spelling errors!).

The plan as of 6 PM tonight is this: They are treating the line infection and once a bed/room opens up at Spaulding Rehabilitation Hospital in Boston, she is going over there for rehab. She will continue with the Vanco while she is there. The surgeons should be removing the staples soon because a week will be up tomorrow afternoon. I asked Heidi when they'd take them out and she said, "Sometime between today and Friday." I'm glad her sense of humor is back.

Other than that, it is back to the grind. Katie goes to Girl Scout Camp on Wednesday and comes home on Friday. This is her first overnight camp. We shall see how it goes. Nick is being Nick. His best friend this summer is the computer and the air conditioning. He'll be my travel companion this week if I have to bring things to Heidi over at Spaulding.

For me, I work tomorrow night and Tuesday night and am off until the weekend. We visited our friends Erin and Andy while we were at NEMC and he looks really good. He hopefully going to go home in the very near future but they are working on getting more nurses to come to the home. I remember doing this battle with Heidi for Heather. It was a pain in the neck to get the proper coverage.

Anyways, that's all for now. I'm sure Heidi will tell me I forgot something to say so until next time; stay cool and keep in touch. We love reading the guestbook. Take care and God bless.

Paul

Thursday, July 27, 2006 10:12 PM CDT

I know, 3 updates in a row. A world record. I'm just doing what I'm told. lolol.

Anyways, here it goes. Heidi is getting better slowly but surely. Some things are better and some things are a little worse but nothing she can't handle.

Some positive things out of all of this: she gets a single room because of her latex allergy; her bilirubin has been cut in half since her gall bladder has been removed; she still may get a mickey button for her j-tube after all; they were able to get the muscle and skin biopsy done so hopefully they can get a better idea what kind of mitochondrial disease Heidi has. The GI doctor is "trying" to find a latex free button but I think the ones Heidi is talking about are. We'll see. Also, her epidural is her friend even though it hurt like you know what going in. Another positive is that they were able to take Heidi off the breathing tube right away and she didn't need to stay on it for 24-48 hours longer. I know this was a concern to Heidi and to her doctors. Praise God!

The negatives of the surgery: Heidi is in pain; she continues to get blood out of the g-tube and the GI doctor finally has seen it. He still doesn't want to go poking around unless her hematocrit levels drop. I don't know???
She got the nurses and surgeons all in a panic last night. She had a Mito crash where her BP and O2 levels dropped and her heart rate went high. I thought her BP's were going crazy where they couldn't be heard at all but they could hear them. Her BP was 80/46 or something like that. Heidi's normal BP is something like 96-100/66-70. Once they gave her a bolus of fluid her numbers went back to normal. In fact, the got all nervous that they even did an EEG at 3 AM. The EEG was normal by the way. Heidi is also very fatigued. Her left sided weakness is worse than she went in. They feel it is all related to the surgery and is just fatigue in general. If Heidi isn't able to transfer from bed to commode or walk a little bit with the walker she may go to Spaulding Rehabilitation in Boston for a little while. She is calling it Camp Spaulding because Katie has been going to camp so Heidi is trying to refer her rehab as Heidi's camp session. I think it worked because Katie had a smile on her face like, "Wow, mommies going to camp too!"

Other than that, Heidi's services are being transferred to the medical doctors now instead of the surgeons. I believe she is going under pulmonology. If her bed/room changes I will give everyone the new room and phone number. Until next time. Thanks for dropping in. Time for bed!

Paul

Thursday, July 27, 2006 9:21 AM CDT

Hello all,

Just a quick update on Heidi and her adventures at NEMC. Overall, Heidi is doing ok. She is still in pain but is better than expected especially since she's had the epidural. She says she's glad that she didn't chicken out in getting it. lolol

Heidi's been spiking temperatures off and on and the doctors don't know why except to say it's probably from surgery. Heidi was able to get off the breathing tube right away after surgery so we didn't need to wait the 24-48 hours of "giving her lungs a break".

Last night Heidi freaked out the nurses/doctors I guess. Heidi told me this morning that she had a "Mito thing" go on. She said they couldn't hear her blood pressure and were worried. This has happened before and it is autonomic. They cut her fluids down because they felt she was on too much. Apparently not.

I'm on the Cape getting the kids and then we are visiting Heidi for a little bit before we head home. I work tomorrow night and then we may come up again on Sunday perhaps after church.

On a personal note, Malisa (from PA) thank you for getting in touch with that person at NEMC. She spoke VERY highly of you and mentioned that you spoke to her about Heidi and the whole Mito thing. I just want to say thank you for contacting her and that she "hooked us up". Thank you! By the way, for those who aren't Malisa and wondering what does he mean by "Hooking us up", "hooking us up" isn't a bad thing. She helped us in a big way.

Anyways, that's it for now. Heidi is hopefully going to get a button for her j-tube. As far as I know, the GI doctor isn't going to scope Heidi for the blood clots because her hematocrit number are fine. I don't know. I guess one issue at a time.

Please keep Heidi in your thoughts and prayers. Thank you mom and dad for taking care of Nicholas and Kaitlin. I'm glad that they were good for you. Our laundry should be over soon so I will go so we can get up to see Heidi. She's already called once seeing if we have left yet. Until the next update.

Paul

Tuesday, July 25, 2006 8:01 PM CDT

Hello from New England Medical Center!

I'm in the Family Room trying to update you because our laptop won't work in the room for some reason.???

Heidi had her surgery yesterday. It was scheduled for 11:30 AM but it didn't happen until 12:30 PM. The surgery ended around 3 PM and Heidi gave birth to a healthy gall bladder. Yup, you guessed it, it looked perfect. The surgeon said the Team wanted Heidi's gall bladder to be out but she said to leave it. I say, you can't judge a book by its cover so I think (and I hope I'm right)once the gall bladder comes back from pathology, it should show problems with her gall bladder. We shall see.

In regards to Heidi, she is in a lot of pain even with an epidural. It worked for a while this AM but she is in lot of pain now. We are waiting for anesthesiology to come up and see her again. Also, Heidi has a fever now so we are seeing what that is from. They checked the surgery sight and that looks good. They think it is from the surgery and probably her lungs. They did an x-ray so I don't know what it showed yet.

Heidi stayed in the PACU last night but is finally in a room now. She is in North 4 in room 4037 and her phone number is 617-636-7024.

I leave tomorrow to pick up Nick and Katie at my parents. They seemed to have fun on the Cape. They've been on a Duck Tour in Hyannis and even went on bumber cars or bumber boats (one or the other?). It sounds like they are having fun. I saw my brother yesterday and stayed over at his place. It's been a while since I've seen him so it was good to see him. He showed me pictures of his trip to France, England, and Amsterdam. He had some interesting pictures that's for sure.

We know Heidi will be here at least until Friday but my suspicion is she'll be here into next week. They were able to do the muscle biopsy and skin biopsy so hopefully this will show something in regards to the mitochondrial disease. I work on Friday and maybe we'll come up to see Heidi on Saturday or Sunday. Only time will tell.

Hopefully tomorrow Heidi will be a lot better and she can began to lower some of the pain meds but she needs them now that's for sure. Take care and continue to keep the thoughts and prayers coming. Thank you.

Paul

Friday, July 21, 2006 8:00 PM CDT

Good evening!

Well, we finally have a date for Heidi's gall bladder surgery. It is this Monday, July 24, 2006 in the late AM or early PM. Please keep your thoughts and prayers on Heidi during this time as all her doctors are worried about her lungs and there is a chance that she may not get off the respirator and will need to have a tracheostomy. We are trying to think positively that everything will go well and she won't need a trach. or anything like that.

They are also going to do a muscle biopsy again in her thigh because the last one she had was sent to the wrong research lab and was mixed in the wrong solution. This time, the metabolic and genetic doctors have discussed it and know where it will be going. We are trying to get answers to this whole mito diagnosis and to see where there is or if there is any correlations with Heather's biopsy and with Heidi's.

Heidi is still bleeding through the g-tube and this is also supposed to be addressed on Monday but I am not having a good feeling about this. GI hasn't really talked to us and her GI doctor has been away and doesn't come back until Monday. They may need to do her GI stuff later in the week or so. We are also trying to get GI to give Heidi a button for her j-tube because it is only being held in now by tape. The stitches have all come undone and is held in by tape. A button would be a lot easier so we shall see.

Heidi's vision and hearing have continued to decline. She has a moderate hearing loss now and the doctor had mentioned cochlear implants at some point once the hearing is done declining. Heidi's vision is getting worse also. She doesn't have vision in the left visual field of both eyes and they believe it was due to a stroke that she had in January. They want to try and put prisms in her glasses because they will supposedly help her gain some sight in the left visual field.

We are a bit nervous in regards to the surgery on Monday. Many things are going on in our minds so please keep Heidi and our family in your thoughts and prayers. Heidi had been feeling better but recently has needed more of the pain medicine because the pain on the right side has gotten worse. We are hoping the once the gall bladder is removed then a lot of her pain will go away and more energy can be re-routed into feeling better.

Nick saw the pulmonologist on Thursday. It was a good appointment. He feels the cpap is doing its thing and he is doing well with it. We mentioned how he is tossing and turning a lot while sleeping so we thought his reflux was getting worse. The pulmonologist thought that it is probably just a brain/ sleep issue and not necessarily the reflux. We may decide to do some GI testing (Example: endoscopy or maybe a PH probe) but I don't want him to have a Nissen Fundoplication if he doesn't need one. We'll persue this more after (and I mean after)Heidi gets home from the hospital.

Heidi and I made an executive decision and we aren't sending Nick to summer camp this year. He's been wiped out with all the heat and he is currently a little dry. He had labs and a urine specimen done while we were in Boston on Thursday. We need him to be drinking more so he doesn't get too dehydrated. They took Boost Breeze off the market so Nick won't drink any other nutritional supplement now. He is smart enough to figure out the tastes of various drinks so it is hard to "sneak" these supplements into him. Wish us luck on this one.

Other than this, nothing else is new. I work Saturday night but am taking Sunday night off and Wednesday night off. I'll go back to work on Friday as long as there are no major problems with Heidi.

Thanks for visiting and please keep Heidi and our family in your thoughts and prayers for Monday and for the weeks ahead. Thank you.

Paul

Monday, July 17, 2006 10:57 AM CDT

Hello all,

Many of you have asked when is Heidi's gall bladder surgery. As of right now, the surgery is set for ...........?????. We don't know yet. We've called and the nurse from the VNA have called and no one knows when the surgery will be. The last that we heard was that it may be July 17 or 18th or 24th or 25th. Obviously, we still haven't heard and considering it's the 17th I don't think it will be today.

We are all very frustrated and want this to happen now. Heidi is very nervous about the surgery but knows she needs to have it done. We had a waste of a trip last week or so to speak to the pain management clinic. We were told that it was very important to make an appt. with them to discuss pain management after the surgery so we went there. After driving 2 hours to Boston we saw the doctor for under 5 minutes and he said nothing new that we hadn't heard before. We could have done this over the phone for Pete's sake.

We have gotten more PCA's for Heidi but still having a hard time finding someone to watch or take care of Heidi When I'm working. We have one person now but that's it. We thought someone else would be able to do it but she can't.

If this keeps up I may need to change to 7-3 shift which I wouldn't personally like. I'm not a morning person and have a hard time waking up in the AM. Ughh! What to do...what to do???

We decided to not bring Nick to summer camp this summer. He went to a Bible camp for 5 days and it was 9-12. He came home not looking to good. He was pale and soaked with sweat. He's not drinking that much and since Boost Breeze is off the market now, he isn't drinking any of the nutritional supplement drinks. He can tell the difference no matter how we try to "disguise" it.

This AM, we told Nick he had to drink a lot of water because he hasn't been drinking. We checked his heart rate and it was around 170. We told Nick he HAD to drink water and he did. After drinking 1/2 liter of water, his heart rate went down to 117. When will all this fun end?

Anyways, Katie is going to camp because she needs the social aspect of camp and she's bored at home. Nick prefers to be on the computer and doesn't like to go outside. Furthermore, mommy and daddy need Katie to go to camp too. Sorry Katie, we do love you!!!! With Katie being bored she is not behaving as nicely as we would like. Since I work, at least I am able to escape the rampage but Heidi is not. This way, Heidi has quiet time for the majority of the day and hopefully when Katie comes home she'll be nice and tired and can go to bed early.

Oh well, that's it for now. It's supposed to hit 98 degrees here today and I have the pleasure of working tonight. Please keep all of our mito friends in your thoughts and prayers and have a pleasant (and COOL) day. Until next time!

Paul

Saturday, July 1, 2006 7:27 PM CDT

Hello to all our friends and family and Happy Fourth of July if we don't write back before then!

It's been a while since we've updated so lets get cracking.
Heidi got her non-powered wheelchair last week. It's not that bad and the legs on it are light! It's so easy to move, I love it. Heidi saw Katies dance recital but it was comical trying to keep her awake. Once Katies group got on I kept nudging her to wake up. She did but closed her eyes again right after the performance. And yes, Katie did an excellent job. She did tap dancing for this performance and danced to a song called, "Pennies in Heaven".

The drainage bag for Heidi's gall bladder tube is being a pain. She is getting "sand" in it and she flushed a good sized gallstone or "sand" through it. I mean, it wasn't huge but considering the size tube coming out of her skin and then to the bigger tube we were impressed it made it out. Heidi is flushing it a lot because it help with the pain on the right side.

Heidi gave me a fight for my money on Thursday night. I ended up calling 911 on her (sorry honey!). Long story short, she had a mini-seizure around 10 AM Thursday and was tired for most of the day. Her O2 and blood sugars have been ok throughout the day. When it was bedtime, her temperature went up and she had the chills. She got white as a ghost and sionodic around the lips. She was non-responsive and when she was responsive she mumbled and didn't make any sense. She also ended up vomiting a little and that took the cake so I called 911.

Heidi also has our favorite UTI that she's had since April or something like that. I just started her on the antibiotic that evening but that wasn't my fault. We just got the antibiotic that evening.

Heidi is at our local hospital in Springfield. She's doing a lot better now. They are thinking she got a little septic due to the UTI. Her labs showed somekind of bile obstruction? so they looked at her gall bladder. They told us today that they couldn't get a good view of the Gall bladder and wanted to repeat it. Once we explained what the plan is for the gall bladder then he said maybe we won't repeat it afterall.

The doctor said today that if Heidi continues to not have a temperature and her labs look decent, she may be able to come home tomorrow (Sunday). We shall see.

Other than that, nothing exciting going on. I work on Monday and Tuesday and we are trying to find more PCA's. The one that was doing evenings has quit and is moving to New Hampshire. I'm trying to find evening PCA's.

Well, that's it for now. Take care and thank you for checking in on us. I'll try and update sometime this coming week. Have a Happy Fourth of July.

Paul

Sunday, June 18, 2006 3:50 PM CDT

Happy Fathers Day! I hope all the dads out there are having a nice day today.

Things have been status-quo for the most part around here. Heidi did have 2-3 really good days and then yesterday she spent most of the day in bed. Unfortunately, she has run out of her pain medicine and has only 3 vials of ativan left. She needs to call tomorrow to get refills or this is going to be a long week.

Heidi is really wanting to go to get the headstone for Heather/us this week. We keep putting it off because I want to go when Heidi is feeling half way decent and we have a plan on what we want. I don't want to go just to say, I don't know..what do you want. However, we do have a plan now so maybe Wednesday we'll go. It all depends on how Heidi feels and if I agree with her assessment. Ha Ha!

Heidi has been thinking about Heather a lot. She was crying a lot today because today is 9 months since she passed away. You know her brain is occupied when she didn't say Happy Fathers Day to me until noon time. I don't know what to say sometimes. I miss Heather too but it effects us differently I guess.

Heidi's doctors are having a meeting tomorrow to discuss whether to take out her gall bladder. Hopefully things will be decided and we can go on with our lives.

Katie has a dance recital on Thursday and Friday of this week. She's so excited. Nick is looking forward to field day this week and we are continuing to figure out what to do for camps for this summer. For me, same old same old. I'm working and keeping busy all the time. I've had a sore throat and my ear has been sore for over a week now. My doctor says its a virus but I thought it was an ear infection. He told me my ears and throat looked fine (which surprised me because it hurts like there's no tomorrow) and he wasn't going to give me an antibiotic because my ear wasn't infected. It is actually feeling better now. It still is a little scratchy but compared to over a week ago this is livible. Now I'm dealing with a kanker sore on the bottom of my mouth just touching my gum. This hurts! I can't wait for this to go away.

Other than that, that's it for now. The kids are playing in the sprinkler and are having fun. Heidi and I are in the air conditioning and I'm trying to catch up on paperwork. Yay for me! Talk to you all later. Stay cool!

Thursday, June 8, 2006 9:26 PM CDT

Good evening everyone!

Just wanted to update you really quickly. Heidi came home on Monday late afternoon. They did a cortizol stem test and put sugar in Heidi's TPN. Heidi's blood sugar has been dropping. There may be something going on with her endocrine system or pituatary gland. We shall see.

It's nice having Heidi home but I wish the state would pay for more PCA's. I am having a hard time getting stuff done or to even have any time for myself. It seems (and this is a little exaggeration) like I'll sit down to do something and five minutes later, Heidi is asking me for something. Don't get me wrong, I love Heidi and I'll do anything for her. I'm just frustrated at the state, the pca program, and the situation in general. I don't like feeling this way and I'm starting to be sarcastic and I don't mean/want to be this way. It's a shame, we have some bodies to be PCA's but we don't have the money from the PCA program to pay them. They only increased her hours to 49 and 3/4 hours but this isn't even guaranteed. Masshealth will decide on this and it takes about a month.

I know Heidi isn't able to help some of the things she does but when I have to repeat myself 5-10 times in order for her to stay awake and do something it gets very frustrating. Heidi even asked me if I was mad at her and I said, "NO". This is true! I'm not mad at her. I am frustrated mostly because the quicker she does this the quicker she can go to bed and I can get work done. Now, I'm sure there are some that would say, "Well Paul, why don't you do this and why don't you do that?" Easy answer, yes I could. However, Heidi wants to be independent and I'm giving her this opportunity to do so. If she needs help after a while I do help her. I'm frustrated because she doesn't see when enough is enough and to ask for help. I'm sorry to vent. Next topic!

Nicky and Katie went on a field trip today to Mystic Aquarium in Connecticut. They seemed to have a fun time and I know Nick did. Nick blessed us with his clucking tic and his eye blinking tic for the past couple of days. We'll see what happens tomorrow.

I pick up Nick's convaid stroller tomorrow. This came in yesterday. We are still waiting on the accessories for Heidi's power chair and for her extra wheelchair. This is incase the lift dies and we can't get her power chair down.

Other than that, I'm going to get going now. I have to bug Heidi again because she wanted to flush her gall bladder tube but I'll bet you she is asleep again. Plus, I need to get her bipap on her.

Thank you for stopping by. I'm sure we'll update again very soon. Please pray for all of our caringbridge friends who are in need of some prayer and deep thoughts. Also, pray that Heidi's pain on her right side goes away. I don't like seeing her in pain. Talk to you all soon.

Paul

OH!!!! I almost forget. Some dear friends of ours had a benefit concert for us on Sunday. Our friends Kim and Sue organized it and Sue played the piano for an hour. It was very well done and it went great. It was informative because they placed mitochondrial disease facts in the program and any donations went to our family. Thank you Sue and Kim! We love you guys!

Thursday, June 1, 2006 10:00 PM CDT

Hello all,

Please forgive me. I'm upset at myself because I somehow deleted a beautiful journal entry and now I have to retype everything again. Ughh!

Sorry to say that I am going to do an edited version of what I wrote before. I brought Heidi to the ER today in Boston. Her blood sugars have been all over the road and she woke up this AM with right sided pain. Also, she says her lungs feel weaker hence, her O2 Sats keep dropping.

The plan is to do a CT scan of her belly and depending on what it says she will have an endoscopy sometime tomorrow. We think her pain is due to the gall bladder and would like them to take it out. We shall see.

Nick was supposed to see GI today but Heidi had other plans (ha ha). We were going to see if Nick's reflux med needed to be tweaked a bit. Nick is on a cpap machine and he claims that he's sleeping better and is more awake in the AM. The concern is that he still is a restless sleeper and Dr. Korson feels it is due to reflux. We will need to reschedule his appointment at a later date.

Katie is enjoying dance. She has recital in a couple of weeks and she is looking forward to it. Her allergies have kicked in a bit and was coughing a lot last month. She has also had 2 ear infections on top of this too. We think she's allergic to pollan and trees.

On Sunday (6/4/06) some friends of ours are having a benefit concert for our family. We were touched and honored that they thought of us for this kind of concert. I hope the concert goes well and we are able to see all of our friends, family, and even strangers! It sounds like it is going to be a good concert. It will serve many purposes. For one, it benefits our family. Second, it is being used to help educate the public in what mitochondrial disease is all about. Our friend Kim had a great idea for the program and I'll let you know about it after the concert. Sorry. Patience is a virtue. Ha Ha Ha Ha!

I had a little chuckle in the ER today. It was funny to me but I have an odd sense of humor. The nurse brought in a urethral catheterization tray but noticed it had latex in it and brought in a different one. After the nurse left, I read this tray and it said, "Caution: This product contains natural rubber latex which may cause allergic reactions." Then next to it a star form had these words in it, "With synthetic vinyl gloves!" For someone with a latex allergy this definitely wouldn't have worked. Can you say, Oxymoron.

Anyways, that is it for now. I'll update more when I talk to Heidi tomorrow. Hopefully I'll hear from her before I have to go to work. Talk to you soon and thanks for dropping by.

Paul

Thursday, May 11, 2006 10:33 PM CDT

Good evening!

I want to let you know that Heidi is home from the hospital now. Heidi is kind of back to where she was and has gotten a little sense of humor. She was telling one of our friends about the tube that is going into her gall bladder when she said, "Boy, I'm starting to look like an octopus with all these tubes sticking out of me."

Heidi used her charm and advocacy skills to get her home. She said what goals do they want her to do in the hospital and couldn't she do them at home. The doctors kind of said that technically she can do them at home so she said, "Good. I want to go home." So, I picked her up today and got home late this afternoon.

Heidi has two doctor appointments on Tuesday in Boston. One is for pulmonology and the other is for GI. She has a new GI doctor because the one she has now is either leaving the hospital or retiring. He told us 3 weeks ago that we would need to find another GI doctor by the end of June or July. Her new one specializes in dysmotility so this will be good.

I was honored to go to our dear friends wake yesterday. Her name is Natalie and she was 7 years old and died from Mitochondrial Disease just like Heather. We met her a couple of years ago when Heather was a patient at NEMC. We stayed in touch with Natalie's mom, Hope, and she even supported us when Heather was in the ICU at NEMC 8 1/2 months ago. We wanted to show or give her support just like she did to us but unfortunately, Heidi was still inpatient. Heidi wanted to go but for obvious reasons she could not. I told Heidi that I would go to the wake and I did.

I met a lot of Hope's family and met many cousins, aunts, uncles, grandparents, and Natalie's dad. I actually met him a couple of times when Heather was inpatient. I had a feeling that the family was very supportive in regards to the care that Natalie got and with helping Hope out with her other two children. Also, all the family (including Natalie) had the green UMDF bracelets on to show support.

God bless to all the Eacrett family. It was a pleasure meeting all of you and an honor to have known Natalie. I am sorry for your loss. Natalie was a fighter and boy do I respect that.

I will end here before this turns into a novel. We will be hiring more PCA's for Heidi. We are also trying to increase her hours for PCA's because she needs more than just 32 hours of PCA help a week. Talk to you all later.

Thursday, May 11, 2006 10:33 PM CDT

Saturday, May 6, 2006 7:58 PM CDT

Hello dear friends and family,

Heidi continues to be in the hospital. She is still having the right sided pain and we are still waiting to hear whether they are going to do anymore tests to rule out the gall bladder or if it's something else.

Heidi had the new J-tube placed on Friday. Interventional radiology was able to get it in. However, they put in a LATEX tube and Heidi is highly allergic to latex. Once Heidi woke up from anesthesia, she felt really crappy and she looked at the tube and said this is latex. They rushed her back to interventional radiology and took that one out and put in a non-latex tube.

How this happened we don't know. It is written in her chart, she has a medic alert bracelet and the hospital bracelet, and she verbally told them as she went to radiology that she is allergic to latex. As for now, she has gotten several apologies and an incident report was written.

We still don't know when Heidi will be discharged from the hospital. She is frustrated and wants to go home. She is still in pain and she has yet again got another UTI. Ughh!

On a sadder note, I found out tonight that a friend of ours, Natalie, lost her life to Mitochondrial Disease. We met her at NEMC while Heather was in the hospital and we have kept in touch with her mom, Hope. Her mom came over to NEMC when Heather was in the ICU just before she passed away. Please keep Natalie in your prayers and her whole family. Just like Heather, Natalie is in a better place and she isn't in pain anymore. Please keep Natalie's family in prayer and pray that our Lord will comfort them as they grieve the loss of their precious little girl (Princess)Natalie. Natalie, you will never be forgotten!

Until next time!

Friday, April 28, 2006 8:05 PM CDT

Hello all,

I don't know where to begin so I guess I'll start at the beginning. Heidi is in the hospital again. She went in on Thursday (last Thursday) to make sure that her G/J tube was working and the J part wasn't. It was curled up in her stomach. So GI admitted her and was going to put in a separate J-tube. While waiting for a room she had a seizure.

On Saturday, she got the new tube placed and she's been sore to say the least. After using the J-tube for a couple of days for meds, it is now, yes, BLOCKED! They think it's blocked due to pill not being crushed too well. They wanted to leave the J-tube in a week so the track will be secure and try and fix it on Monday.

Now for the fun stuff (ha, ha). Neurology is involved due to her seizure and she actually had a second one around Tuesday or Wednesday (the days are jumbled, sorry). The neurologist that saw her is the same one that saw her when she had her first stroke-like event. He says that was due to stress. Well, can you guess what his answer is this time. You guessed it, STRESS! He doesn't believe in Mitochondrial Disease and that everything (her symptoms, postitive DNA for LHON)is a result of stress. Heidi requested a different neurologist but someone said they'd try but if he's on call then she's stuck with him, yada yada.

Another lovely thing that happened was when Heidi had her seizure, neuro-opthalmology had come in to do an exam. Margaret, the NP in Metabolics, told them to come back the other day or beginning of next week to do the exam because Heidi was still post dictal and very sleepy still. Needless to say, Margaret left but the neuro-opthalmologist didn't. In fact, according to Heidi, she demanded to complete the exam and even yelled at Heidi to open her eyes. Heidi wasn't a happy camper.

We also found out that Heidi's gall bladder is inflamed. From what I understand from Heidi, they are going to treat it with medicine. However, if they need to put Heidi under and do surgery again for the J-tube, then they will remove her gall bladder.

Lastly, I'm not sure what this entails except for maybe the endocrine experts or medical professionals that read this entry, Heidi's cortazol levels are low. From what I understand, when someone is sick these are supposed to be high normal. Heidi's is oppossite. Hers is below normal. I guess they gave her some medicine today for it (I think a shot). I guess this is to help someone to get more energy but if hers is low, then that would explain why she's so tired all the time. Needless to say, endocrinology is involved now too.

There's a good chance that Heidi will be going to rehab again. She does not want to go but the consensus as of Wednesday, we (doctors and myself)feel that Heidi needs rehab. She especially needs it for PT and Respiratory but also for OT too. We are trying to get her into Mount Sinaii (sorry, I always butcher the spelling on that one)because it is a short term rehab place. Heidi needs to get stronger muscle wise (legs and lungs) before she comes home.

Well this is a book so I will stop for now. I'll update next week after I visit her on Monday and Tuesday. Please pray for good results for the J-tube and that the doctors get a good handle on all the other things that are happening to my wife. Also, please pray that Heidi will realize that rehab will be the best thing for her so she can stay home longer and be with her family. Thank you very much and I'll talk to everyone next week. TTFN.

Saturday, April 22, 2006 8:33 PM CDT

Once again it has been a while since our last update. Please forgive us. I wish I could say it's because of "No news is good news" but I can't.

The kids have had a nasty cough for a while now and Kaitlin has had it over a month now. Nick sees Dr. Korson on Wednesday at NEMC for a follow-up and Katie sees the pediatrician on Friday to follow up on her cough. For myself, I now have the cough but I only caught it about 2 days ago. The cough is bothersome because it is a dry/hacking cough. Yuck.

Now to Heidi. As some of you may know, Heidi had a UTI that never went away. She continues to be on IV antibiotics for it but is getting better slowly but surely. We also noticed that when Heidi gets sick or has an infection her blood sugars bottom out and has low oxygen levels which require her to need oxygen.

Due to the fact that Heidi's blood sugars have dropped and her oxygen levels are becoming an issue during an illness/infection, we are devising a booklet about Heidi and all her symptoms and what to do about them before calling 911. The metabolic clinic has helped with an Emergnecy Care letter for ER's and gave a brief protocol for calling 911 but we are going to expand it. More work for us but necessary.

Currently, Heidi's G-J has been giving her problems for the past several weeks and it turns out that her J-tube portion is all twisted in her stomach. In a nutshell, the J tube doesn't work and is in the wrong spot. They put in a separate J tube today thus hopefully eliminating many visits to the doctors for malfunctioning tubes. Heidi is sore but called tonight to say that she was feeling a little better. They have her on a PCA pump and this is helping with her pain management.

I had the pleasure of witnessing a seizure on Thursday thanks to Heidi. While waiting for a room we visited the metabolic clinic to update the nurse there. She left the room and Heidi told me to call the infusion company. Before she finished the sentence, she mumbled 3 or 4 words and went into a full body seizure. She sunk into her chair and the only fear that I had was her sliding out of the chair. After about 5 seconds I realized I should count to see how long the seizure lasted and it stopped after about 25-30 seconds. Heidi fell asleep during the seizure and didn't open her eyes until 5 minutes later. When she did she cried and asked what happened.

This was my first seizure that I witnessed with Heidi but had seen many and even longer ones with Heather. In an ironic sort of way, Heather prepared me to help Heidi. I wasn't scared and I was calm throughout the whole ordeal. Like I said above, my only fear was that she was going to fall out of her chair so I put my arms by her legs so she wouldn't slide down any more. That would have been bad.

I spoke to the social worker before I left on Thursday and she is really nice. She wants to help us out as much as she can. She was thrown back to know that Heidi is only getting 32 hours of PCA hours and NO nursing hours. She wants to help with that but for adults, there aren't any services for nurses to come out and do block nursing. We have the visiting nurses come twice a week but that's to draw blood and do vitals. That's it.

Well, that's it for now. I'm tired so I'm signing off now. As always, thank you for checking in. Please sign the guestbook if you have a chance. Thank you.

Sunday, March 26, 2006 4:39 PM CST

Hello all,

Sorry for not updating sooner. Heidi is home from the hospital and we are all happy that she's home. Heidi's metabolic doctors are great and I'm not just saying that because I like them.

When Heidi had her seizure, the NP stayed with Heidi for 2 hours and when they (the NP and the metabolic doctor Dr. K.) were paged, they both ran up to her room and was with her. Furthermore, Margaret, the NP, has done an amazing job with getting stuff done (getting appts., talking to insurance, etc.). If only Heidi's local doctors could be this efficient.

Heidi has another UTI and this one isn't compatible with the previous antibiotic so she is on a stronger one now. She got her 2nd dose in and looks better. Heidi is going to Boston on Tuesday for 2 appt's. and I'll need to drive her. None of her PCA's can drive that day so I need to make a deal with the devil at work. Ha HA!

Today, we went to a "Day of Remembrance" which was sponsored by Baystate Medical Center. This is an event which ackowledges all the children that have passed away within the past 6 months or something like that. It was a nice tribute but sad. Both Heidi and I were crying but unfortunately I have a headache now because of it. We brought in a picture of Heather to put on display and we brought in a picture so someone can make a quilt using a fabric and the picture.

Nicky and Katie were well behaved for the most part at the ceremony. A little ancy but overall they sat there and listened to the poems and stories. They were able to decorate a flower pot and were able to take it home. I told Heidi about this ceremony and she wanted to go. However, she changed her mind for a brief second but then said she was going to go.

Heidi has been asking some hard/difficult questions the past several days and unfortunately I don't have the answers. She asked me how I was handling everything and I told her I don't know. It's different for me because I need to keep functioning and keep the family and house intact. Also, I don't have Mitochondrial Disaease and I don't know physically what it feels like to have Mito. Unfortunately, I have seen this disease at its worse, but I don't know how it feels personally. Heidi has to deal with it every day now and she can relate to what Heather went through. I think this is a big difference.

I think I'll stop here. It's a book now and I only meant to put in a chapter or two. Thank you for all your thoughts and prayers and for just thinking of us in general. Thank you to Ann Marie, Justine, Donna, and Kerry for your kind words to Heidi and to our family over the past several days. If I forgot someone I apologize. Heidi doesn't always tell me everything so I may miss something once in a while. Please keep another Mito family in your prayers. Skye, an Eli's Angel, passed away a week ago Saturday. Please pray for her family eventhough this request is a bit late. Also, please keep all our friends who are ill or in the hospital in your thoughts and prayers too. Until next time........

Paul

Thursday, March 16, 2006 10:33 PM CST

Hello all,

Just a quick update (mostly because it's late)for you this evening. Heidi is still in Boston and it's not because of the Paratitis. Long story short, her G-J tube is blocked and is unable to use the J-tube portion of her tube. Apparently, a nurse didn't crush her meds well enough and this blocked her tube.

They tried to fix it today but was unsuccessful. They sedated her but Heidi was wretching a lot and the tube kept coming out of the intestines. She is going to the OR tomorrow to finish the placement of the J-tube. Please pray that this goes smoothly. Heidi and anesthesia don't always get along so shorter is better.

Another complication that stalled discharge (if this wasn't enough) was that on Tuesday AM Heidi had another episode. She either had another stroke-like event or a seizure. The neurologist came by the other day and he feels that it was a seizure. Heidi will be starting on an anti-seizure medication once her tube gets unclogged. The doctor is going to start her on Kepra (I think that's the name) but we need to wait for her tube to get fixed.

Other than this, nothing else is new. The kids overall are doing fairly well. I met a new doctor today because my PCP wants to focus on Pulmonary stuff. My new doctor seems nice enough so I'll see how it goes. His philosophy on blood sugar testing is the same as my old PCP's. Why test your blood sugar if you're not on insulin? I see him again in 2 months and I need more blood work drawn. His advice to me was to exercise more and watch what I eat. Gee, where have I heard that before? He asked me if my weight was the highest its been and I said NO. A year or so ago I used to be 230 so I'm happy that I am under 220. I'll never see my lowest weight as an adult (170 lbs.) but if I can get near 200 lbs. I'll be happy. I'm hoping playing basketball will do wonders for my figure. Ha Ha Ha! Sorry, it's late and I'm tired. Once things settle down again we'll update.

Please keep our friends in your thoughts and prayers who are ill either at home or in the hospital. A partial list (and I don't mean to leave anyone out) is: Sam, Natalie, Heather, Donna, Tim, Heidi (my wife), and Alyson. I'm sure there is more but that's all I can remember. Have a nice evening.

Paul

Sunday, March 12, 2006 2:22 PM CST

Hello,

Heidi is doing a lot better now. The swelling is going down and is pretty much gone and she isn't on the PCA pump anymore. I'm glad her pain is a lot better.

However, Heidi is having some issues with d-satting while she's active and when she's talking for a long time. The doctors want to do an echocardiagram on Monday to make sure nothing is going wrong with her heart. My bet is that she has muscle weakness in her lungs and this is why her oxygen levels are going low. They want to check to be sure.

Also, Heidi's G/J tube is blocked so they will need to try and unblock it before she goes home. Discharge was supposed to be on Monday but it looks like Tuesday will be discharge day. Either way, the kids and I will be glad to get Heidi home.

Other than that, my parents came up this weekend and we had a nice time. They took me out on Sunday for Breakfast and then we played cards after. We had fun and as usual, the kids loved playing with their dog.

Have a nice day and thank you for stopping by. Please sign the guestbook for we enjoy reading your guestbook entries. Have a great day.

Paul

Thursday, March 9, 2006 7:43 AM CST

Good morning!

Just a quick update because I'll be getting more later on this afternoon. Heidi had a "plug" in her lungs last night and couldn't get a deep enough breath to cough. Her oxygen levels kept dropping (90 and high 80's) and the alarms kept beeping. The nurse kept turning it off from the nurses station and never came in to see Heidi. When she finally came in she told Heidi it hasn't gone below 90. Heidi told her it's set to go off when her O2 level is under 90 then why is it beeping. Heidi said the nurse just turned around and left and was in a mood.

From what I understand, she didn't have enough moisture in the air/lungs so they cooped up a humidifier for her bipap and this helped the plug.

From what it sounds like, the doctors on this particular floor don't like to do extra work unless there is an emergency. They have been giving the nurse practitioner problems about getting consults to see Heidi. It seems these doctors are interested in treating the problem but not finding out the reason why she got the problem. The nurse practitioner wanted to have ENT consult (this was a no brainer)and a rheumatology consult. Heidi doesn't have arthritis but I guess they help with muscle/join pain and check into auto-immune diseases or something like that. To me, it makes sense to try and figure out whatever they can while she's there. I prefer the "Killing two birds with one stone" philosophy. It's hard to manage various appointments, especially in Boston, and for the fact that Heidi gets tired so quickly that long trips aren't the greatest things in the world. This is so frustrating!

Anyways, I'll update more when I get more information. Have a nice day.

Paul

Monday, March 6, 2006 9:27 AM CST

Hello everyone!

Just a quick update (if that's possible) on the Coleman family.

Nicky and Katie are doing pretty well. Our insurance won't pay for the stroller we ordered for Nicholas so we are going to make another appointment with the PT to discuss other possible options. A friend of ours is going to let us borrow her daughters convaid stroller to see how Nick likes it. Nick is also doing very well with his bipap machine. He is so good in keeping it on. He is still moving around in bed but he's keeping the mask on.

Katie turned 7 in February and she's getting so big. She is actually reading now and we are just amazed at how well she's doing. Keep up the good work honey!

Heidi is back in the hospital. She is in Boston at NEMC. Her right side of her face started swelling up on Saturday AM and it is VERY painful. Her pain medicine isn't touching it so we called her primary doctor in Springfield. While waiting for her doctor to call back we called her doctors in Boston. They called back twice and said she should go to the ER but we told them we are going to Boston. We have had our issues with our local hospital and we felt more comfortable going to Boston.

As it turns out, Heidi has Paratitis, swelling of the parotid gland. Heidi has dry mouth and has had it for 6 weeks. They have her on an antibiotic but it is still swollen and painful. She is admitted primarily for pain reasons.

I feel bad because I don't know how to help her and nothing is helping with her pain. It was nice seeing Dr. K (one of Heidi's metabolic doctors who specializes in Mitochondrial Disease)the other day. He got right on top of things and made his suggestions known. Unfortunately, the doctors on the floor didn't do one of his recommendations so we shall see if they change it any time soon.

Please keep Heidi and our family in your thoughts and prayers. There are several of our friends who are struggling with symptoms of mitochondrial disease right now so please keep them in your thoughts. Also, I read that RJ, who is an Eli's Angel, could use some prayers right now. I guess he is having more seizures than usual so please keep him in your thoughts as well.

Other than this, we are holding our own. I have begun to play basketball at our church on Thursday evenings. It is nice to get out and be with my fellow brothers and to get some exercise (which I need to do on a regular basis). My birthday is on the 9th so I don't know if I'll exercise or have cake and ice cream and get fat? I suppose I could compromise and do BOTH! Ha Ha. Take care and thanks for checking in on us. We'll post again when Heidi comes home. Until next time!

Tuesday, February 14, 2006 10:02 PM CST

Good evening!

Sorry that it has been a while since our last update. It has been a little hectic to say the least so I'll get to the point.

About a month or so ago Heidi got a GJ tube placed over at one of the hospitals in Boston. They trialed her on formula and is only tolerating about 10cc's of formula through the j-tube. Her GI doctor wanted her to be tolerating more so he's not happy but Heidi is happy that her guts are actually tolerating 10 cc's.

Prior to Heidi going home, they decreased her fluids too quickly and ended up getting a metabolic stroke. This affected her vision, walking, left sided numbness. Once her fluids got back in check, the left sided weakness/numbness got better. However, she still has problems with her left hand.

So, she was transferred to Spaulding Rehab in Boston to work on OT and PT. They did obvious stuff there for Heidi (OT and PT) and they also did pulmonary function tests too. Heidi will be on a bi-pap machine now instead of the cpap. While at Spaulding, she got the results of some bladder tests from the other hospital and she has neurogenic bladder just like Heather had. The only difference is we don't have to cath Heidi 3-4 times a day. Fortunately, it is treated with medication.

Long story short, Heidi is coming home tomorrow (Wednesday) and we are very happy. Nick is on a cpap machine and is doing pretty well with it. He calls it a sleep cap. He was very well behaved when he did the sleep study again to try him on it.

Both Nick and Katie are getting over colds (with a nasty cough) but are feeling better for the most part. They can't wait for mommy to be home.

A final thought, Nick said something cute last week. I was flipping through the channels and PBS came on. Nick looked at it and said, "Daddy look it is Signing Time. If Heather was alive she would be watching it with us". I wanted to cry so bad. I got teary but I could only think that, 1) that's true she would love to watch it and 2) she probably already was watching it with us, and 3) I was surprised to see Signing Time on PBS!

Until next time and God bless.

Paul

Sunday, January 1, 2006 8:44 AM CST

Hello and Happy New Year! We hope everyone had a great but safe New Years Eve.

Heidi went to Boston at the end of last week and needed to get her central line pulled. She had an infection in it yet again and had a UTI. Her cultures have been negative from her line so the plan is to place another central line in on Tuesday and for her to go home on Wednesday. She currently has a temporary line in her groin and it is very positional. Heidi sounds so much better when you talk to her...thank you antibiotics!

I had a nice visit with my friend Chris last night. We went to high school together but he lives in CA now. He was in MA visiting his family who live near Boston. I told him about Heather and he was sad to hear about that. While Chris was here Katie got Chris and I to play Sorry with her. No one won because pizza came and Nick and Katie watched one of their new DVD's. As we ate, I showed Chris the slideshow that we played at Heather's Memorial Service. As usual, I cried as we watched it. The slideshow really puts things into perspective for me and I get very emotional. Chris asked me if I was ok and I said yes, although I had a lump in my throat. I'm not totally sure, but I think my tears are from remembrance and joy rather than total sadness. Don't get me wrong, I miss our little "Petunia" very, very much and am sad that she's not with us and I can't play with her like I used to. However, the tears of sadness are slowly switching to tears of joy and remembering how fun she was even though she was sick so much.

I also showed him the scrap book that our friend made for us with all of Heather's pictures in it. His family wants to help us somehow so we tried to come up with some ideas. We tried to come up with ideas that the whole family can do together and some things that Heidi can do by herself.

Our friend who came with us to Nick's Make-A-Wish trip brought over her pictures the other day. Faith, the pictures came out great! You got some excellent pictures in there. Thank you.

Well, that's it for now. I need to get dressed. I just finished shoveling our driveway. We got 3-4 inches of snow last night. Take care and Happy New Year!

If you'd like to call Heidi at New England Medical Center, her number is: 617-636-7372.

Paul

Monday, December 26, 2005 4:38 PM CST

Hello and Merry Christmas, Happy Hannukah, and Happy New Year to all our friends and family! Sorry it has been almost a month since our last post but you know how things can get?

The holidays have been especially hard for us because of Heather not being here. We miss her a lot and have been thinking of her a lot lately. I forgot who wrote this in the guest book but they said something like (and I'm paraphrasing) isn't it great knowing that Heather is up in Heaven with the person in which Christmas is named after. This is so true. I know for me I have a piece of comfort knowing that Heather is ok and safe.

Nick had a reality check the other day. He was talking with Heidi and said that he couldn't wait for Heather to come down and be with us for Christmas. When we told him that she wasn't going to be here, just in spirit and in our memories, he started crying and asking WHY. Needless to say, we had a domino effect of crying.

The kids had a nice Christmas despite mommy and daddy not being in the best of moods. We got picked for something at Baystate Medical Center to receive presents from them. We got a lot of gifts including a 7 inch portable DVD Player. Heidi got a few things at Walmart and some friends at church brought some gifts over too. The rest came from Santa.

We had a nice trip to Florida at the beginning of December. It was Nick's Make-A-Wish trip. Give Kids The World was an amazing place and would recommend going there if you want to go to Disney and are approved for a Wish. It is hard to put into words in describing our experience while there. All I can say is I would go back in a heart beat and if Heather were alive, she would of had a great time there too.

I am working as a CNA at a local nursing home/rehab. center and am working with children. I started in November. Heidi is home and has had some issues with her line. She goes to Boston tomorrow to see about changing the line or replacing the line. She also has a doctors appt. in the afternoon. Both Nicky and Katie are doing well in school but are on vacation for the rest of the week. Health-wise both of them are doing well. Nick is trying another sleep-test in January to put him on a CPAP machine. We'll see how he does.

I think I will stop here for now. Nick wants his own Caringbridge site but we just haven't started it yet. We are just behind in things lately.

Please keep Eli's mom and dad (Chad and Ann) in your prayers as they have lost their son and they were robbed a week later after Eli passed away. Also, please keep our friends Natalie and Savannah in your prayers as they are both in the hospital.

Lastly, I want to say how blessed we are to have so many special friends and family that have helped us out over the past year and especially these last 3 months. Without all of you, I think we would go nuts. I hope that the Year 2006 brings us better health, and continues to give us great friends and supportive family.

Happy Holidays and God bless!

Paul

Tuesday, November 29, 2005 9:33 PM CST

Hello to all our friends and family!

We hope that everyone had a nice Thanksgiving. We went to the Cape to visit my parents for Thanksgiving. We had a nice time. My brother came down with his friend and he cooked the Thanksgiving meal. It was very good.

Sorry it has been a while since our last update. We are still in "slow-Mo" and not very motivated. The holidays are definitely going to be hard without having our precious little Angel, Heather, with us.

We got some results from Heather's biopsies except the one for her intestines. Those are still pending. We found out that Heather was deficient in Complex's 1,3, and 4 and she had scarring in her liver suggestive of the beginning of liver disease due to her being on TPN. She also had scarring in her lungs which is probably the result of her having ARDS. We tried explaining to people that Heather was only running on 2 out of 5 cylinders (in regards to the Complex's).

Our son, Nicholas, is now a member of Eli's Angels. He loves seeing his picture with the cactus on that website. He is very excited about going to Disney World on 12/9/05-12/15/05. We are able to go thanks to Make-A-Wish. Nick was diagnosed as having mitochondrial disease too. Nick also wants to have his own Caringbridge page. We'll have to work on that.

Heidi is hanging in there. She plans on having her J-tube replaced in January after the Disney trip. She got results from her biopsy's too but I'll let her explain them. It is hard to explain. I wouldn't even know where to begin.

Well, that's it for now. Please keep our friend Natalie in you thoughts and prayers as she is still sick and in the hospital. Also, please pray for Eli's parents, Chad and Ann, as they cope with the loss of their son. Our thoughts and prayers are with all of you who are ill, hospitalized, frustrated, mourning the loss of a loved one, and even just having anger over this horrible and complex disease.

Paul

Thursday, October 13, 2005 7:00 PM CDT

I overheard Nick's bedtime prayers tonight:

Dear Jesus, I hope you had a lot of playdates with Heather today. She likes elmo if you want to know what to play with her. I'm happy she's an angel but I miss her being a regular kid. Please give her a hug from me. Love, Nicholas.

I'm with you, Nick. I'm happy that Heather is in a glorious place but I miss hugging her. I would give anything to hug her tight and rub her hair, resting her head on my shoulder, feeling her little pat-pat-pat on my back.

Heather's been gone for almost a month. I keep forgetting she's gone and then I'm shocked back into reality. Sometimes, though, it seems like the time has flown. The flowers are dried, almost all the thank-you cards are written, all the legal stuff is completed. We purchased two more plots next to Heather at the cemetary, so Mommy and Daddy will be near her forever. We started looking at stones, and we plan to have Elmo engraved next to her name.

Heather's at peace, but the horrible disease still has a large presence in the household. I'm on 24 hour TPN, have a G tube for venting, and am using a power chair to get around. I just got my pair of custom AFO's and they look huge compared to Heather's! Nick is taking the full mito cocktail and his quirkiness is being monitored. We're evaluating and treating any little problems he has, such as endocrine and GI problems. He also failed his sleep study so we need to address that too. Katie is asymptomatic but will be started on the mito cocktail to try to prevent or postpone any futue health problems.

We will be having a celebration of Heather's life at New England Medical Center in Boston on October 25 at 12:30 in the chapel on floating 6. Heather spent a lot of her life at NEMC, which we affectionately called her "timeshare", and the staff are truly Heather's extended family. Everyone is invited to attend.

There are no words to describe how much Paul and I have gained strength from your prayers and messages of support. We are truly grateful.
Heidi

Monday, October 3, 2005 6:51 PM CDT

Good evening!

We had Heather's Memorial Service on September 28th. It was an emotional evening but very well done. It was very well attended and we had close to 180-200 people there. It was so nice to see so many people who cared about Heather.

We decided to have another Memorial Service in Boston At New England Medical Center on October 25th at 12:30 PM. NEMC was a second home to Heather and we affectionally called it Heather's Timeshare. We wanted all the nurses and doctors that knew Heather to attend and the best chance to get the majority of the staff to attend was to have a service at NEMC. Friends and family who couldn't make it to the Memorial Service on the 28th are more than welcome to attend the service at NEMC.

We went to the Mito-What? Walk yesterday and it was a beautiful day for a walk. We didn't raise as much as we did last year but we still had a nice time. It was nice seeing old friends and we met some new ones. We met a wonderful family from Vermont and we met their son Alex. He is a cutie! I was impressed in how many people joined "Alex's Team". It was very touching to say the least.

It has been a rough weekend for us in regards to our emotions. We thought about Heather a lot and even said how the weather on Sunday would have been perfect for Heather to go for a walk in. Also, someone from "The Garden" called today and spoke to Heidi. I guess this is a bereavement group but mostly for children who lost an adult/parent. We are hesitant in going to this group because we don't want to give Nick and Katie the wrong impression and think that either Heidi or I are going to die. I personally would prefer to go to a group where parents have lost a child. At least we would have something more in common.

I'm going to end here. Thank you for all the heart-felt sympathy and for checking in with us. There isn't a day that we don't think about Heather and we miss her very much. Good night and thank you for dropping in.

Monday, September 26, 2005 5:11 AM CDT

Happy Birthday to my precious angel Heather! Yesterday, September 25, you would have turned three. Mommy misses you very much, baby girl.
For the first week, I kept thinking she was at the hospital and that I should call to check on her. When Heather was at Franciscan's, I called several times a day and even though I missed her terribly I was comfortable that she was happy and well cared for. Now that she is in heaven, she is happy and healthy and is watching over US instead of the other way around.

Heather was buried last Wednesday. It was a very small service and it was very sad. She didn't look like herself at all and you could tell she had been very sick. She wore the dress that she was going to wear for her birthday. I was going to bring her to the mall to have pictures taken in that dress. I had no idea that she was going to be buried in it. Heather had two lovies- bunny blankets, and I kept both of them, and Heather was buried with one of the lovies that we had been trying to give her as a substitute. She couldn't be fooled! I'm glad I kept the blankets though. I gave her bunny blankets to her brother and sister and now they're sleeping with them. They miss their sister so much!

Heather's memorial service is this Wednesday, Sept 28, at 6 pm at College Church in Northampton, MA. It sounds like there's going to be quite a crowd. That little girl touched many lives. A friend put together a CD of pictures and music for the ceremony. It's really beautiful. I'm struggling with writing something for the service. It's the hardest situation in the world to write about, losing a child.

Did you get a chance to check out www.mitoaction.org and see Heather's picture in the brochure? In memory of Heather, we are asking for donations to "Heather's Fund", managed by the Mitochondrial Disease Action Committee. Heather's fund will provide mito families with funds for parking, meals, cab rides, and other incidental expenses when they have a child in the hospital. If you wish to donate, checks can be made out to MDAC- in memory of Heather Coleman, 14 Pembroke St., Medford, MA; 02155.

Words cannot express how much your thoughts and prayers in the guestbook mean to us. Thank you for your continued support during this sad time.

Thanks
Heidi

Sunday, September 18, 2005 4:37 AM CDT

I've been staring at this blank journal page for at least five minutes... How can I describe the conflicting feelings in my heart... the intense Joy that my beautiful baby is now running and laughing in Heaven, free forever from pain and illness... the excruciating emptiness I feel when I remember that she didn't come home with me and I won't be able to hold her and kiss her again.

Last night was my first solid night of sleep in over 3 weeks. It was an unfamiliar house that I woke up to; no muffled TV noises, no pumps and monitors, no footsteps and running water as the overnight nurse prepared Heather's morning meds. We've made so many sacrifices in order to care for Heather at home, and privacy is one of them. We literally had people in our home 24/7. It's strange to wake up to a darkened living room and a quiet house.

Donna, thank you for sharing the sad news of Heather's passing. You did a beautiful job wiht such a devastating message. I was simply too drained to share the news. After a refreshing night, I'm ready to share the wonderful, peaceful way that Heather left this earth.

Thursday night was very rough. Her lung collapsed again and the chest tube was repositioned. Her O2 sats and blood gases kept deteriorating so the vent settings were once again turned way up. Her huge, distended belly started leaking blood and poop from around her G and J tubes as well as through the tubing. Her urine output dropped to almost nothing and she continued to swell. My 30 pound princess had 25-30 pounds of extra fluid in her body when she passed. All this fluid caused her face to look purple with distended, firm veins under the skin surface. She looked like she was suffering. But she stayed with her Mama. I was up almost all night talking to her, holding her hand, stroking her hair, telling her not to worry, that she was going to a wonderful place with no boo-boos and no tubies.

Friday morning, Paul and I each got to snuggle with her in bed. I got to wrap my arms around her and kiss her. After the pastors arrived, I held her and rocked her with the vent still attached. When Heather told me she was ready, they took out the breathing tube and I put her pacifier in her mouth. We have pictures of the moment and they are unbelieveable! Heather is pink and it actually looks like she is smiling! She flew to heaven quickly, peacefully, while warmly snuggled in mommy's arms. I am honored that Heather loved me so much that she endured a terrible night in order to wait for me to hold her.

We made Heather's arrangements yesterday. We are going to celebrate Heather's life on September 28 at 6pm at College Church on Pomeroy Terrace, Northampton, MA. Email me if you would like to attend and need directions. We are going to have a private viewing and burial this week. We are also planning to have a memorial service for Heather at New England Medical Center, although we have not yet set the date for the service.

We have decided to start a family support fund for families with Mito, to help with incidental expenses while hospitalized. It will be called "Heather's fund" and will be accessed through the Mitochondrial Disease Action Committee. www.mitoaction.org
In lieu of flowers, please send donations to:

MDAC- in memory of Heather Coleman
14 Pembroke St.
Medford, MA 02155

Thank you for all the touching, heartfelt notes in the guest book. They are encouraging and inspiring in this difficult time. Paul and I will need lots of support in the difficult days and weeks ahead.
Heidi

Friday, September 16, 2005 7:12 PM CDT

Hello everyone,
This is Donna, again, posting for Heidi and Paul. It is with deepest sorrow and through blinding tears I am writing to tell all of you that Princess Heather became an Angel at 10:10 this morning. Mom and dad were with her and she was peaceful and comfortable.
Heather was surrounded with Love and was allowed to become an angel, tube free. Heather left this world the exact same way she entered it....perfectly, to those who loved her.
Heidi has said she will update as soon as she can.

Thursday, September 15, 2005 3:29 PM CDT

Hi all, this is Donna again...
I have been in contact with Heidi all day today and I do not want to be the one to share this news, but felt it would help Heidi and Paul to at least update one more time.
Heather is fighting hard and is ready to let go. Heidi and Paul are ready to let her go as well. This has been a hard day for them. Heather is such a strong baby. She has fought so hard. She has the strongest most loving parents who have given her a normal life despite all the hardships they have been through. Heather will continue to fight THROUGH Heidi. Heidi is stronger because of her. They all are.
Please keep the family in your prayers tonight.
I love you Heather, you really were a princess, and you will be a extra special angel. I love you Heidi, you are an inspiration to us all.
with tears I say till next time
Donna

Wednesday, September 14, 2005 5:36 PM CDT

Its me, Donna again...
Heidi just called and said Heather is making enough urine to keep her kidneys working well, but she needs to produce 500 cc more urine per day in order for her lungs to empty out. She has said that she was told if Heather cannot do this, she will not make it.
I also want to let you all know Heidi is also admitted at NEMC for electrolytes and sugar problems. Heidi is not feeling well and is also very upset. Heather is fighting and I know she is not going to give up this fight. Neither is Heidi.
Keep praying everyone, this is going to be a long week!!

Wednesday, September 14, 2005 5:47 AM CDT

Heather is fighting! She continues to produce urine and is now making enough to balance the fluids going into her, but she needs to make extra to get rid of all the extra fluid that's making it hard for her lungs. She's getting another transfusion of red blood cells today but before they do that they're going to check her clotting factors. Heather's been getting infusions of clotting factors but they want to find out exactly which one she's having problems with. Her lungs are still bleeding from time to time and the tricky part is to get them to stop bleeding without letting her form clots where she's not supposed to.

They didn't lower the vent settings too much because she's at safe pressure levels and they wanted her to rest and heal. She also had a fever yesterday which could have happened for lots of reasons, but they drew more cultures just to make sure. But, we had a pleasant surprise when she was suctioned. She tolerated it the best she ever has and they didn't need to increase her oxygen after! Yay Heather!

Heather is still critical and the doctors can't predict if she'll go home with us, but she's giving it all she's got! Keep fighting, princess! You're making a little progress every day!

Thank you for the prayers and guest book messages. Heather can feel your support too!
Heidi, Heather's Mom

Monday, September 12, 2005 6:53 PM CDT

Heather is still with us and gave us several nice surprises today. First, her blood pressure came back up and they discontinued the dopamine drip. Then her kidneys started producing urine. Then her O2 sats came up to the high 90's and they were able to turn her oxygen back down to a safe level. They can't be sure how well her brain did without oxygen for that long but her liver and heart didn't sustain damage so there's a good chance. Her lungs are still very very sick and she's still very critical. But, yesterday we expected her to earn her wings and she's still here fighting. Her brother and sister got to see her and my mom and sister and Paul's parents and brother, plus lots of friends came. We cried, hugged, took pictures, and made a plan for if Heather's heart stopped again.

Thank you for your prayers, they're helping Heather fight! She has a long, hard road ahead of her and a lot of fighting to do if she's going to come home again.

Heidi, Heather's Mommy

Sunday, September 11, 2005 9:09 PM CDT

Hi, This is Donna, Heidi's friend. She asked me to update quickly and let everyone know what is going on with Heather.
Heather had a very rough start to the day today. Her heart stopped for 45 minutes and it was really very touch and go for most of the day. Right now her SATs are still in the low 90's. They have been able to lower her vent rate a little bit, and she is holding her own right now. At this point it is all up to Heather, She pretty much will be leading her own care, and healing times. She is resting.
The next 24 hours are critical, and Heidi is sleeping right by her baby's side. Paul is in Boston with the kids at a hotel so he is close by if Heidi needs him.
I know this is Heather's site, but I also want to add that Heidi is having a rough time medically and her blood sugars are unstable at the moment possibly from all the stress, but she is also recovering from surgery still so it is important that she remain rested as she possibly can.
I have said it before and I will repeat it here...Heidi and Paul are remarkably strong, and are amazing parents. All 3 of their kids are extremely lucky to have them.
Love you all!!
I am sure Paul or Heidi will update as soon as they have a moment. All messages will be such an inspiration to them, so be sure to say hi!

Friday, September 9, 2005 7:50 PM CDT

Rough day today. Please keep praying! Heather had a hard time keeping her sats up and she had blood in her lungs when they suctioned her. It turns out that the bases of both lungs had collapsed. The doctor inserted 2 chest tubes and she seems more comfortable. It's terrible watching my precious angel having to go through all this and not being able to do anything for her. I want to hold her and the most I can do is rub her leg or touch her foot. They can't even change her position in the bed because she's too unstable.

Heather had visitors today! Very dear family friends drove 2 hours just to see her. We talked about all the crazy things Heather likes to do and what a spunky little girl she is. Donna is back from her "Vacation" too (www.caringbridge.org/ma/thorell_kids). Their situation isn't great either, but there's strength in numbers. We support each other and can cry, laugh, whine, curse, you name it. Lots of people have been calling, too, and it's been difficult to answer the phone. Please keep trying!

I had "the talk" with her mito doctor and it seems that this weekend she should be turning a corner, one way or another. This illness seems to have become mainly a lung issue and she doesn't have the multisystem involvement that is common with mito progression, so there's hope that after her lungs heal she may get better. I so desperately want to take my baby home with me but I know she is very very sick and that might not happen.

Thank you for signing the guest book. Your thoughts and prayers keep us going during tough times. It will probably be a while before I get a chance to visit everyone's sites to say thank you. My computer access is a bit limited while she's in PICU. Keep storming heaven with prayers!
Take care
Heidi

Thursday, September 8, 2005 5:29 AM CDT

Baby steps, baby steps...
Heather has finally had 24 hours of absolute rest on the oscillating vent. They were able to reduce her vent pressures from dangerously high to ridiculously high. And her O2 sats have been stable as long as she isn't touched, moved, poked, etc. When they have to do anything she desats into the 50's and 60's and it takes a lot of effort to get her back up. She still thinks she's a 2 pound preemie!

A few of Heather's "usual" problems are creeping back in. Her electrolytes are a bit unstable, which means more fluid boluses with meds in them, which means harder work to get the extra fluid out of her body. Her bilirubin is going up and her eyes are a little yellow. Her gut is bleeding again so we'll have to watch her blood counts, more blood means more fluid, AAAAARRRRGGGGHHH! On top of all this, Heather is way too unstable for any diagnostic studies except those that can be done at the bedside. Fungal pneumonia is a distinct possibility but they can't take her off the vent long enough to do a bronchoscopy to get a good sample, and she doesn't even tolerate deep suctioning. Her temps continue and her white blood count is 45,000. So, as one of Heather's doctors put it, "we're in the woods." I'm going to try to put a picture of Heather in the photo album. You may not want to look at it if tubes make you squeamish. But if you look hard you can see the beautiful little princess taking a nap while her body heals.

Thank you for your prayers, they're working!
Heidi

Tuesday, September 6, 2005 8:03 PM CDT

URGENT PRAYERS NEEDED!!!!!!

Heather's lung function had been slowly becoming less stable over the weekend and suddenly got much worse this afternoon. They were no longer able to keep her oxygen levels up on the regular ventilator and had to change her to a high frequency oscillating ventilator, which gives hundreds of shallow breaths per minute. SHe is receiving medicine to paralyze and sedate her. She still has signs of a serious infection somewhere in her body but they can't locate the source. She's on heavy-duty antibiotics so it's probably being treated.

I'll be discharged tomorrow and I'll move back into the parent's room in the PICU. I'll be on TPN until I can have my J tube replaced, which won't be done until Heather is stable.

Please think of sweet Heather. This is by far her toughest battle yet. I miss her spunk! Please sign the guestbook. We could really use the support, prayers, and kind words.
Heidi

Saturday, September 3, 2005 2:42 PM CDT

Hello dear friends,

Heather is slowly getting better. She is still in the PICU and still on the ventilator. She has a fever again and are getting more cultures to find where the infection is. The swelling in her face has come down a lot but her belly is still swollen. They are trying to get her off the vent so they are trying a new medicine to help with sedation but allows for a quicker weaning period off the ventilator.

Heidi is admitted also at NEMC. Her J-tube got pulled/caught and couldn't be put in the tract. She has an infection and is on antibiotics. They thought she needed an operation but it can wait now for a couple of weeks. She will stay on antibiotics and will be on TPN for a couple of weeks. Heidi is feeling a lot better with the j-tube out and getting morphine for pain.

Our other 2 children are at my parents on the Cape. Last night they went to the beach and today they went to the Children's Museum. I am very thankful that my parents were able to watch the kids for me as I went to the hospital to keep an eye on Heidi and Heather.

That's it for now. My brain is mush with everything that has happened, especially over the past 24 hours. One of us will update again. Have a great day and if you're able too, please donate during the MDA Marathon. Part of the donations goes towards research for Mitochondrial Disease. Thank you!

Tuesday, August 30, 2005 6:30 PM CDT

Good evening!

I saw Heather today and she doesn't look good. She looks worse from the last time I saw her. Heidi said that the swelling in her face, especially around her eyes, have come down a little. She said, "At least you can see the shape of her nose now." Apparently, her face was so swollen that her nose just blended in with her face.

Heather is still on a high-vent setting and they are trying to get the fluid out of her lungs cleared out. Her belly is firm and distended but less bleeding from the g-tube. Heather is getting more blood and some i.v. lasix. She is sedated so she is resting comfortably. Her temp is getting better and her heart rate is down to the 144's.

Heidi spoke to Dr. K's nurse practitioner and they thought it might be a good idea that once Heather is stable to leave NEMC that she go back to "Camp Franciscan" for a week or two. I agreed.

It is a shame that all of this had to happen. It may not have been prevented, but Heather would have been a lot less sick. Everyone had concerns about her face swelling from day 1. Too bad the surgeons kept wanting to "give it another day". Bye the way, the doctors think that Heather had SVCS (Superior Vena Cava syndrome). We were very, very, lucky that the vascular surgeon was consulted when he was. Prior to surgery to remove her line, her trachea started to close. They used a tube about the size of a drinking straw. It had already shifted due to the swelling but apparently the swelling started to close her trachea. We are very thankful that the metabolic doctor on call sought for a second opinion when she did. God moves in mysterious ways. Bye the way, Heidi said that she hasn't seen any surgeon since Sunday morning. Maybe they will "give it another day" before they visit Heather.

Have a great day. I'll update more when I can. Heidi is doing pretty well right now. Things are going slow but sure but we all have been stressed over the past week and a half with the whole Heather thing. The other 2 kids are doing ok. Katie is acting out and tormenting her brother. Nick is going with the flow and has an appointment in Boston on Thursday to see the GI doctor at Mass General. My last question for the evening is: IS IT SCHOOL YET! I want it to be but they don't start until the 6th of September. Argh! Good night.

Monday, August 29, 2005 6:54 AM CDT

Good morning everyone!

Heidi called this morning and said Heather was misbehaving last night. She was desatting so they increased her oxygen and increased something on the respirator. Her fevers are slowly getting better which is good. Heather's face is pink again rather than blue and gray but the swelling will take some time to go down.

Other than that, Heidi is waiting for all the regular doctors to come in this AM and she said that when Heather needs another line she would like a pediatric vascular surgeon to put one in either at Mass General Hospital or Children's Hospital.

I'll update more when more news comes in. Please continue to pray for Heather and for all her Caring Bridge friends (and those who aren't) who are ill or in the hospital. Thank you. Talk to you soon. Paul

Sunday, August 28, 2005 6:54 PM CDT

Good evening. Well, things went from ok to worse this morning in regards to Heather. Her face got more swollen overnight and her eyes are shut because of it. Apparently, the CT did show something but it took 2-3 doctors to find it.

What we know is Heather does have an infection in her line (the cultures came back positive) and they do believe the line is preventing blood flow to the neck/head. The surgeon said this AM to give it another day but the metabolism doctor asked for a second opinion. A vascular surgeon came in and said that the line needed to come out. Heather's voice is quiet because her trachea has shifted because of the swelling. Heather's COAG's were up so she is not clotting right so they gave her FSP? during the surgery. she is currently in the PICU and she remains intubated. I guess they are going to keep her sedated but not totally asleep. Her oxygen levels have been great but continues to have fevers around 102-104. Her heart rate has been high (around 170's) but they did make it down into the 140's. She has a temporary femoral line again so who knows how long it will last.

I think this is the bulk of the update. I'll need to head up on Tuesday to bring Heidi more supplies (her fluids, bags for feeds, and her feeds). Please continue to pray for Heather and for Natalie, Tim, and Gwen who continue to deal with their own medical issues. Thank you.

Saturday, August 27, 2005 8:45 PM CDT

It is 10 PM EST and I noticed Heather's website isn't updated so I will do a quick one because I know Heidi will do a thorough update most likely tomorrow.

Heather is not home anymore. She is back in Boston over at NEMC. Heather's face continues to be swollen and is getting worse rather than better. It is sore to the touch now and you can see veins puffing out of her neck. Her voice is still soft and when she tries to scream she gets even softer. All tests so far for her neck have been negative so they are not sure exactly why her neck is puffing up.

Heather also has a fever (104) and is currently on vancomycin, an antibiotic. Her g-tube is putting out a lot of "coffee-ground" blood which is unusual for her. Her j-tube has also been very sensitive to the touch.

I'll stop here as I know Heidi wanted to update Heather's page her self. She'll fill in all the other information for you. Thanks for visiting!

Tuesday, August 23, 2005 10:12 PM CDT

Heather is home! She came home Monday but looks aweful. Her face is still swollen from the surgery and her guts are shut down. She is getting pain around her j-tube site so we've given her tylenol with codeine. She isn't her spunky little self but we are so happy to get her home.

Heather saw the Mito doctor on Friday too after her discharge. Overall, I thought it was a good meeting and it was good to see where each one of us is thinking in regards to Heather's health and care. There were some touchy topics that I didn't even think we'd discuss (IE> What if Heather needed a new liver because of damage from TPN, would we do it? Would we put her through the surgery?) It was a very thought out and productive meeting. The hard thing is seeing Heather having so much problems with her GI tract. GI wise, Heather is very effected. I think what we see is what we get. Now I think we are at a point where we will treat her pain and live one day at a time.

It is getting late so I am going to leave now. I need to get the van inspected tomorrow. Tomorrow looks to be a very long day. The electrician should be coming again tomorrow to finish up his work.

Well, talk to you later. Thank you for praying for Heather and Heidi these past couple of months (or even longer). Your thoughts and prayers were definitely felt.

Tuesday, August 23, 2005 10:12 PM CDT

Tuesday, August 16, 2005 9:21 PM CDT

I am writing a quick update for all of you. Heather's line couldn't be fixed over at Franciscans so she is going to need a new one placed. The plan is to look at her veins tomorrow afternoon and then get a new line placed on Thursday AM. I will be with Heather until Friday. Once the line is placed, we hope to bring Heather home on the 22nd. We can't wait to bring her home.

Heidi is recovering from surgery slowly but surely. Her feeds are being fussy and is getting pain in her stomach. She is being a trooper through all of this even though she's dealing a lot physically and emotionally. I love you Heidi!

Other than that, the house should be done by the end of the week. We received a grant that fixes "code violations". We have a handicapped accessible ramp, new windows, a new front door, new tub/ shower plumbing, a new bath wall surround, a small heater in the basement, and a few other small touch up things. Everything is looking nice and all should be done by the end of the week. We are very excited! Things couldn't have happened at a better time.

Well, that's it for now. Please continue to think/pray for all our friends who are ill or in the hospital. Thank you.

Saturday, August 13, 2005 8:23 PM CDT

Good evening!

Sorry it has been a while since our last update. I'll fill you in on all the happenings at the Coleman household.

Where to begin? Well, Heidi is home from the hospital. She had a g-tube and j-tube placed and needed a double lumen hickman placed. They attempted to place a PICC line but it failed. They tried 6 times but couldn't get it to go through. Heidi is still sore and tired but is glad to be home.

We have a handicapped accessible ramp now and the people have begun putting up windows. Two more windows need to be put up but one of them still has a family in there. A family of........ANTS! There were tons of them. They sprayed them a lot so hopefully this got them convicted.

Today we picked up the van with the lift. Heidi likes it and the kids do too. It drives really nice although it does get some getting used to. It is a heavier van (for obvious reasons)so I need to make sure to brake earlier than I'm used to. I'm sure you're wondering who donated the van to us? I did promise to tell all of you once we got the van so here we go. The people who donated the van to us was.....Chris and Maryanne Cooper. He is an actor and she is a writer/screen writer/actress. He's been in "Me, Myself, and Irene", "The Patriot", and "Adaptations" in which he won an Oscar for. He also was in "Seabiscuit" and did an Episode on "Law and Order". Mrs. Cooper is a writer but has been on HBO's "Sopranos" as someones mother. They were both down to Earth and very nice. I was even fortunate enough to hold his Oscar. By the way, for a statue/trophy that thing is pretty heavy! Unfortunately, they lost their son in January due to complications with CP. God bless you Jesse.

Moving on, Heather is still at Franciscan's Hospital for Children. We miss her very much. We hope to bring her home by the 22nd. She has another hole in her line which makes number 3 in a month. They will reassess on Monday to see whether to try and glue it again or pull it out and put a new one in. We called the on-call pedi-surgeon at NEMC and they said it should be fine until Monday. Heather looked a little floppy today when we saw her. There are many reasons why this could happen but hopefully they will keep an eye on her.

That's the update for now and sorry about the book. Please keep all our friends who are sick or are just getting home from the hospitals in your thoughts and prayers. Please pray especially for Natalie, Tim, and Gwen who are are hospitalized now and their families. Talk to you soon!

Saturday, August 6, 2005 5:37 AM CDT

Hi All
Our home computer is on the fritz so I'm updating from my lovely penthouse at Mass General. Yup, I'm still here. As with anything having to do with mito, things didn't exactly go as planned and I need a bit more fine tuning than was anticipated. I'm hopeful that next week I'll be home, though.

Unfortunately, that means Heather's discharge will need to be postponed. We figure that I should probably be home and settled for a week before she comes home so maybe by the 16th.

Heather is doing fine at Franciscans. She has her routine and she gets lots of attention because she is one of the more active kids on the unit. I like spice! I miss the Old Heather, but it truly is a blessing that she isn't as cognitively aware that she's away from us for so long. Paul stopped in to visit her last week and she was very happy and they played for a while. When he left she was fine with it. She has no concept of time so to her it wasn't a week since she saw him, it's as if he just stepped out of the room. Tears of relief and sadness at the same time...

Heather seems to be stable right now. Her central line site is getting a little yucky again so they're putting bacteroban on it. She's still on Augmentin too. She's had a little bit of belly pain so they're watching her closely.

Thank you very much for writing notes in the guestbook. I haven't had a chance to answer them all, as sitting up to type is still very tiring, but I'll try to get to it!

Please say prayers for Natalie, a special little girl with mito, who is struggling terribly right now.

Heidi

Saturday, July 30, 2005 2:08 PM CDT

Good afternoon!

Heather continues to do pretty well at Franciscan's. Our goal is for her to come home on August 9th. We are still looking for Nurses though. Heather saw the GI doctor yesterday and it went ok. He wants to try Heather on a medication that will help with her motility issues and hopefully help with the constipation. It is called Zelnorm. He also feels that she has small bowel bacterial overgrowth and will go on Augmentin for 7 days.
The doctor wants to see Heather again in 4 weeks.

Heidi's testing on her GI tract went better than expected. The monometry testing showed her intestines are working so they placed a g-tube and a j-tube yesterday. The surgeon said that it went fine and that within 24 hours they would try and use the tubes to see what happens. Heidi is uncomfortable but sounded better this afternoon. If all goes well, she may come home Tuesday or Wednesday. We also found out she doesn't have ulcerative colitis and are waiting to hear if she has celiac disease.

Please continue to pray for our family and for our other friends who may be in the hospital or are sick. Three people come to mind right now: Natalie, Lexi, and Malisa. Have a great day and don' forget to sign our guestbook.

Paul

Saturday, July 30, 2005 2:08 PM CDT

Tuesday, July 26, 2005 7:39 PM CDT

Good evening everyone! Heather continues to be at Camp Franciscan due to lack of nursing coverage and Heidi is admitted at Mass General Hospital for a bunch of testing. I am home with our other two children trying to keep things as "normal" as possible.

The construction crew came yesterday and started to build the ramp for us. This changed our agenda a little bit for this week but that is ok. The ramp is number one on the list of things to get done so we were happy to change the plans a bit. The ramp should be done by Friday. Yay!

Finding nursing for Heather continues to be slow as expected (and as usual). One nursing agency might have a night nurse and the other hired an LPN and might be interested in Heather's case. She wants to orient with a nurse to see if she wants to take on Heather's case. We shall see.

In regards to the van, I spoke to the mother a couple of days ago. She is really nice and we actually have gone through a lot of similar things with our children. For example, her son had dystonia really bad and Heather gets it bad too. She is away on vacation until August 1st and her husband is away in California until the 3rd. When he comes back the plan is for us to meet and we will hopefully have a relatively new handicapped accessible van. We can't wait because our van is dead for the most part. I am told the van is a 1999 Dodge Caravan (I believe) with just over 20,000 miles on it. It also has an "elevator lift" with A.C. and heat. We will drive to their town to pick it up.

A quick update on Heather. She is doing fine. There was a question of whether she needed a blood transfusion because her hematocrit was low. However, they re-did her blood work and it was back to "normal" again. Her central line according to the nurse practitioner is looking better. She said that it looks better than it did last week. Before Heidi went to the hospital, we voiced some thoughts. One was we felt as though the family wasn't involved in the medical management of things. Another was they have a policy that parents can't ask for lab results and get copies of them unless a doctor is present. This policy has got to go. I think they may not be used to parents asking for lab results or something. One pondering question I had when we left was this. Heather had been draining yucky stuff out of her g-tube and it had "coffee-grounds" in it. If we were at NEMC, they would have tried to see why she was having coffee-grounds. Granted it looks like a pseudo-obstruction flare up but they weren't checking in to see what was causing it. When we spoke to a doctor we asked him to check her blood work and to do a urine test to make sure she didn't have a UTI. He did it and everthing was fine. This concerned us (that they didn't check into it)but in general she seems to be getting good care. We just don't want Heather to get sick because they may not be on top of things like we are usually at home.

Well, enough rambling. Thank you for checking in on us. Please keep Heather and Heidi in your thoughts and prayers as they deal with being in the hospital (or camp) and any emotional stress that they may have. Please pray for our friend Natalie as she just got admitted at Mass General today and for our friends Rod and Donna. They are heading south for a well deserved vacation so please pray that they travel safely with their family. Thanks for stopping by.

Monday, July 18, 2005 7:09 PM CDT

Good evening!

Heidi asked me to update everyone on Ms. Heather. It's been an emotional and frustrating day today and I'm about to let it all out so here it goes.

Heather in general is doing fine at "Camp Franciscan". She's had a few bumps like she pulled her g-tube out and her central line had to get fixed (needed to be glued together). We have a meeting tomorrow with the nurses and doctors? to discuss our intentions and their intentions during Heather's admission. Nick isn't feeling well so it looks as though Heidi will be at the meeting.

We are still working on nursing care for Heather. Heather's case manager from one of the nursing agencies (which I'll call Macy's for now)got us very upset today. Heidi spoke to her about nursing care and said that they are working on it but don't expect any miracles. It then progressed to her telling Heidi that it was our choice to institutionalize Heather and not theirs. I was told that this was said in a very negative way. Yes, it was our choice but because of safety concerns we had no choice to send her to Franciscans. If we had proper nursing coverage she wouldn't have needed to go there in the first place. The case manager also said that other family's haven't complained about the nursing shortage and this included families that had one of the parents ill. First of all, we know other families that have complained to Macy's about inadequate nursing coverage and have "ignored" their phone calls. Macy's will either get snippy at them or you can sense them rolling their eyes at you over the phone. Secondly, the case manager has NEVER met Heather (except in pictures)and has no idea what it's like to take care of Heather.

After speaking to the case manager Heidi called back and spoke to the Director of Nursing at Macy's. This conversation didn't go well either. This person essentially told us that Macy's provides per diem care- not nursing care. If people need a lot of nursing care then they don't do that. She even had the gall to tell us to teach other family members to do things for Heather. We have family members that are hesitant in picking up Heather because of all her tubes never mind teaching one of them to give her a shot or change her central line dressing. The case manager needs to spend 24 hours with us to see what we do for Heather. Then maybe she'll get a clue.

In my twisted mind, I find irony in this whole thing. Macy's claims they don't have the nursing and it was our choice to institutionalize Heather and not theirs. However, various doctors have mentioned to us how surprised how well Heather is doing considering all her issues and that she has stayed alive as long as she has. All have credited it to OUR care for Heather. The sense I get is Macy's feels we aren't doing enough for Heather but our doctors are saying we've gone far and beyond the call of duty. Don't get me wrong, I don't want Heather at "Camp" and am not saying that we can't take care of her. I will fight all the way to keep our beautiful little girl home. We needed the extra help because Heidi has become ill and she is going to get testing done in another week. I would have been home with 3 children, Heather, our 6 year old, and our 7 year old with autism and tourettes. Do you think I could have used some help? Ummmm, yup! Heather qualifies for 112 hours a week of nursing/pca care and Macy's supplies us with a whopping .........12 hours of it. I don't do 3 things for Heather as of yet. I don't cath. her bladder 4 times a day, I don't give her Epogen shot, and I don't change her central line dressing. I'll mix her TPN and Protonix and give her I.v. meds. I'll even put her G-tube back in her belly if it comes out (well, when Heather pulls it out). Sometimes one has to draw the line.

On some positive news, we have heard from the people who are going to build the ramp for us. Granted it was a phone message but at least it's starting to get the ball rolling. Furthermore, we may have a lead on a handicapped accessible van but I don't want to say too much right now. Someone is contacting the family to see if they would give us the van. We'll update more on that one when we hear.

Well, that's it for now. Please keep us in your thoughts and prayers. Please pray that Macy's and the other Agency we use find more nurses. By the way, the other Agency has actually been more supportive in trying to find people for us. THANK YOU! Have a great day!

Paul

Tuesday, July 12, 2005 8:04 PM CDT

Good evening!

Well, we have good news and some bad news. Here's the good news.....Heather is feeling a lot better and up to her usually self. We got (finally) her gait trainer and brought it to the hospital. She looks really cute in it. She did a good job considering she hasn't "walked" since September 2004.

The bad news is Heather won't be coming home for a while. Due to the fact that TWO of our nursing agencies can't provide us with more than 12 hours a week total(Heather qualifies for 112 hours a week), Heather will be staying at a different hospital for respite purposes. We had 3 choices: New England Pediatric Care, Spalding Rehab. at MGH, and Franciscan Hospital. New England Pediatric Care don't do a lot with 24 hour i.v. therapy so this wasn't a good match. We toured Spalding today but Heidi is touring Franciscan Hospital tomorrow. Heidi is leaning towards Spalding because she has to be admitted to MGH on the 24th so this way she can visit Heather when she wants to. Heidi is having several tests done and is getting a "tune up".

Another factor that went into this decision is that Heidi's health continues to be of concern and needs to rest. I can not attend to Heidi and Heather and our other two children and give them equal billing. Heather was hospitalized because we couldn't clear her lungs well enough and if we had the nursing care this hospitalization may have been prevented. When asked to give us skilled nursing visits one agency told me to learn how to cathederize my daughter. I told them I can do a lot of things for my daughter but I currently don't do 3 things: 1) cathederize her, 2) give her epogen shot, 3) change her central line dressing.

The current plan is to transfer Heather to Spalding (most likely) when they have a bed and she will stay until August 1, 2005. We are referring this hospitalization to Nicky and Katie as Camp for Heather. We will call it Camp Franciscan or Camp Spalding depending on where she goes. The kids are happy that Heather is going to camp.

The time apart from Heather is going to be stressful, emotional, and any other feelings that can pop into ones mind. During this "respite", we are calling many agencies to get more nursing and PCA's. We are also considering notifying our legislatures and the media about this constant problem/crisis in regards to lack of nursing especially in the home health care field. We want HEATHER HOME!!!!!! The quicker Heather has nursing/PCA care lined up then the quicker she can come home.

Well, I'll stop there for now. Sorry for the book and thank you for checking in on us. I hope to update again in a couple of days. Take care and God Bless.

Wednesday, July 6, 2005 9:14 PM CDT

Hello everyone,

Heather and I are spending a little time in our time share in Boston. We arrived yesterday late afternoon. Heather wants to confuse us more and more each day.

Heather's lungs haven't been sounding too good lately. We have increased her pulmicort to 3x a day and xopenex every 4-5 hours. Heather just completed 4 days of Orapred and her lungs still sounded kind of crackily. Heather has also blessed us with having bradycardia so her monitors are going off like crazy. We have also had a concern about her line and the possibility of the cuff coming out. Here is the latest information that I have.

Surgery came in and looked at her line. In a nutshell, they don't feel the cuff is coming out and that the yellow that is surrounding the insertion site is moisture from her dressing and not the cuff. Could the moisture be urine?????? The surgeon didn't think it looked infected even though it is red around the site. He told us to (brace yourself) "Keep an eye on it". Ughh!!! They also did a line study to see why we can only put 200cc's an hour through her line without the pumps going nuts. The test went well and there is no obstruction in the line. One thought is maybe our pumps at home have an issue with back pressure. Maybe there is a way to correct it. Who knows?

Pulmonary did not come in today so sorry no update from them yet.

Cardiology stopped by and noticed that Heather did drop her heart rate during the night. It didn't drop to 48 like it did at home but at the hospital it went as low as 58. They did an EKG during the night which was fine but they put a Halter monitor on her to see if she brady's during the day. They will take it off tomorrow morning and hopefully read it tomorrow afternoon. The first impression from the cardiologist is that it is nothing to worry about. If she is asymptomatic and does this mostly when she is sleeping then he wouldn't worry too much about it. He says that she could be having the bradycardia because the vegal nerve is being affected. For example, her heart rate could be going low because she may be refluxing, she may be trying to cough but can't, or something as simple as trying to push out a BM. Hopefully, more answers will be answered tomorrow.

Other than that, this is the majority of the news from Boston. Hopefully I will see Pulmonary to ask more questions tomorrow and maybe get the results from the cardiologist in the afternoon. In general, Heather looks good but why does she need more oxygen than usual and why is she bradying when she hasn't done it since she was a preemie? Also, why do her lungs sound chunky and what can we do at home to help Heather in regards to her respiratory illnesses. And yes, we will keep an eye on the line and cuff (oops, sorry, moisture). We'll update more when we can. I hope all is well with everyone else.

Paul

Monday, July 4, 2005 5:37 AM CDT

WOAH, are we waaaaay overdue for an update! Sheesh. Well, let me try to get you all caught up.

As you know, Heather had her line pulled after her blood cultures wouldn't clean up. That was Wednesday. Then she continued the vanco through the weekend. We also had her brain MRI done, which showed no changes. She also attempted an ABR hearing test, which couldn't be completed due to electrical interference in the room. However, she did pass the OAE test, which checks inner ear function, which shows us that her hearing problems aren't due to damage from antibiotics. It also means any hearing problems she has probably wouldn't be correctable. Well, on Monday morning she had a venogram to look at her chest veins and they found a blood clot on one side and a narrowing on the other. So, the new line was placed in her groin. Yup. The splash zone. The kid with chronic diarrhea has a central line in her diaper area. Yikes! We're changing the dressing every time it gets pooped on and we're using these nifty circle thingies called biopatches that kind of act as an extra antibacterial barrier. The line is a single lumen (one tube) and that's all Heather will be able to have from now on. Her veins are having some kind of reaction to having lines in them and she's building scar tissue and clots way too easily. This means that if she's sick she'll still need a peripheral IV for medication. Her new line stops running if we try to give her over 200ml an hour, and her baseline for fluids is 177ml an hour, so we don't have a lot of room to play with. We have to stop one of her fluids to give something else even if we could technically give everything together, which is a pain. And, her line doesn't seem to be cementing itself into her body and the cuff is starting to show as the line wiggles out. She's had this problem before, her body seems to scar where we don't want it to and won't heal where it's supposed to. Stubborn toddler for you!

Heather came home on Tuesday and we've had spotty nursing coverage since then. Heather now has another respiratory illness and is back to her usual tricks of desatting and needing chest PT and nebs around the clock. She also has a new trick of having bradycardia while she's sleeping. Little stinker will drop her heart rate into the 40's and not breathe enough, just to see us come running. I'm thinking it might be time to look into BIPAP. Maybe we all could get some sleep.

I also had my first official mito crash this weekend. My blood sugar suddenly started to run low instead of high (gee, maybe I only had that 24 hour diabetes that's been going around, lol) and I take the very long acting insulin so I was in trouble. My endocrinologist wanted me to go in for IV fluids (which I do at home anyway, what were we thinking?) and to make a long story short, I ended up not having any sugar or fluid for almost 36 hours, which caused stroke-like symptoms. When my symptoms started resolving after nothing but sugar water, the neuro concluded that it must be stress and called in the rubber room patrol. By that time I was much better and when they recommended antidepressants I said "thanks, I'll take it under advisement" and went home. Sheesh. My labs screamed "mito crash, mito crash, ding ding ding" and they were ready to drug me. Alrighty then, so what have we learned from this? Communication is essential! If anyone is reading this, PLEASE write up an updated list of meds, diagnoses, doctor's names and numbers, any funny symptoms, allergies, treatments, anything that would be helpful in an emergency, and keep it with you. Even with a positive mito diagnosis the doctors had no clue to check simple things to figure out what was wrong with me.

Ok ok I know this site is for Heather but I just had to pass that along.

One thing that made me chuckle is that the psych asked me "do you feel guilty?" Ummmmmm, Hello? I'm a mom. The guilt starts before the placenta's in the pan. And besides that regular guilt, there the "Oh, you have a genetic disease that you passed on to your children before you even knew you had it" guilt. Yuppers, check the "guilt" box on your form, doc. Do I feel stressed? Another no-brainer. The only people who don't feel stressed are in a coma. Or drunk. And if I need to be drunk or in a coma to relieve stress, then no thank you. Want to relieve my stress? Then fill my gas tank. Wash some clothes. Take us out to a movie. Make some phone calls for me. Stop by for a cup of coffee and say "I've been praying for you." No pill can do that.

Take cae
Heidi

Thursday, June 23, 2005 9:49 PM CDT

Sorry that we haven't updated in a while. Heather continues to relax in her time share in Boston. We thought that she would be home today but her blood cultures are still coming back positive. So, they removed the line and now are waiting for negative cultures and hopefully they will put in a new line on Monday or Tuesday. Other than that, Heather is doing great and back to her old devilish (yet cute) self.

We got information about a handicap accessible van and it costs around $5,000. It's a 1992 Economy van with a lift in the back. We are trying to find more information about the van (does it have heat/AC, runs good, etc.) and trying to find the money. We couldn't even pay for our son's filling never mind a van. Arghh!

We are sending out the packet of stuff to the Catastrophic Fund so we can get reimbursed for all medical stuff we had to pay for which insurance didn't cover. If everything looks ok we should get a good hunk of change back from them.

Well, that's it for now. Please keep Heather and the rest of our family in your thoughts and prayers. Our other daughter, Kaitlin, graduated from Kindergarten on Wednesday. She was so excited. Our son moves on to second grade. Nick had to get a filling today and he did a lot better than I expected. The doctor did a great job with him.

Have a great day and we'll talk to you soon. We love it when you visit our guestbook and sign in. We love to read and to see who visits Heather's webpage each and every day. Bye for now.

Paul

Sunday, June 19, 2005 9:03 PM CDT

Good evening!

Well, Heather is starting to perk up a bit. She continues to be on 2 antibiotics and her hematocrit (I believe)was 22. On Monday it was 29. So, Heather got blood today and she is moving more and her heart rate actually went to normal. Her fevers are still going up and down and we found out that her infection is staph eppi. It's a "skin" infection but not as bad as some of the other ones that Heather has had in the past.

Heidi's PICC line stopped working because she has a blood clot so they removed it. She has a peripheral in now to get fluids and hopefully something will be decided on Tuesday AM.

Other than that, Kaitlin graduates from Kindergarten on Wednesday and she's very excited. Nick will be going into 2nd grade. They are both excited that the summer is coming up. Tomorrow, some guys from church are going to help me move some plants to another area so we can clear out a path for the ramp. We don't know when this will happen but they (the construction company)are trying to make it into a top priority so when they have a second maybe they can do this first before working on the rest of the house.

That's it for now. I'm sure Heidi will update at some point and all of this may make more sense. Please keep our friends Natalie, Cassie, and Tim in your prayers as they continue with their own health issues. Thanks!

Paul

Saturday, June 18, 2005 9:48 PM CDT

Good evening!

Heather has been keeping us busy the past couple of weeks. She is currently in Boston at our "time share". She went there yesterday with a fever (104.5) and seizures. Here's the story.

On Thursday afternoon, Heather pulled out her g-tube and by the time we noticed it her stoma had closed somewhat. Heidi tried putting it back in but couldn't and we didn't want to force it in. Heidi put in a smaller cathether to keep the stoma open. We brought Heather to Baystate where they took the small catheter out and FORCED the g-tube back in. It was actually a short visit.

Heather behaved for the night nurse Thursday night and her temperature was 97.6 at 2 AM. However, somewhere between 2AM and 8 AM her temp. shot up from 97.6-104.5. Heather had 2 observed seizures on Friday AM so we went to Baystate and visited the ER.

Not to bore anyone with details, but it wasn't a beneficial visit. We were there for 8 hours and the only thing they really did was give her tylenol and ibuprofin for fever. We requested that Heather be transported to Boston and the doctor couldn't understand why. We contacted our doctor in Boston and he in turn spoke to the doctor taking care of Heather in the ER. All of a sudden, the nurse came in and said they were contacting an ambulance to transport us to Boston and were hooking Heather up to an antibiotic (Rocephen).

We arrived in Boston just after 8 PM and did a short stay in NEMC's ER and was sent upstairs around 10 PM. Heather is more active than she was yesterday but still not feeling well. Her temperature did get as low as 100.? but went back to 104 tonight. She is on 2 antibiotics and we are holding medications that go through her j-tube unless we can get them to be IV. Heather's guts have shut down and isn't absorbing her meds. We found that she has gram positive cocci (an infection)and our bet is that it came from the insertion of her g-tube.

The question now remains: 1) Do we treat her central line or do we pull it and put in a new one? 2) Is she on the right medications or do we need to put in an anti-fungal antibiotic? 3) How can we keep her temperatures down?

It has been a stressful 24 hours with our "patunia" but she is looking a lot better than yesterday so I feel confident that something is working which is making her feel better.

Please pray for our friends who are also in Boston with Heather (and you know who you are) so they have a quick recovery and parents and doctors have better communication amongst each other. Have a great day.

Friday, June 17, 2005 5:00 AM CDT

Wow, is it Friday already? This week just flew by. Heather is feeling better and is back to her usual, boisterous self. She just learned how to wave "hi" and waves at everyone and everything! When she sees me at the door to the room and I say hi to her she turns to me and waves like crazy, with a big grin on her face. Too cute! The complication is that now when she's settling down to sleep if she sees movement she starts waving and won't settle down for a nap. What a toddler! She's been laughing like crazy when we play peek-a-boo or make her stuffed Elmo dance. She's very alert and feels great. She has an appointment with the neurologist today to discuss her seizure meds but I really think that we should leave her alone and not start any new meds. Encephalopathy isn't something that can be cured with medication and she doesn't seem too bothered by the seizures. She isn't in pain, she's only been having them when she's asleep and is on a monitor while she's sleeping, and she's not operating any heavy machinery, for pete's sake. The potential benefits of adding a med for little twitchy seizures and EEG abnormalities could make her drowsy and affect her quality of life. No way. We would definitely medicate grand mal seizures and we always treat pain. The twitchies can stay.

Nick and Katie had field day for school yesterday. It was 57 degrees and rainy. Poor kids! They both came home soggy and sticky from ice cream sundaes and seemed like the had a good time despite the weather. They each brought home a ticket to the little train at the park so we'll go on an excursion another day.

My health problems continue to complicate things. I had a PICC line inserted on Monday and it wasn't in a good position, although functional. I'm having a hickman placed today. I am feeling better with IV fluids and we may be getting somewhere with defining what problems mito is causing in my body. Good grief!

Prayers for mito kids who are struggling right now; Tim, Jack, Natalie, Gwen.

Heidi

Sunday, June 12, 2005 9:08 AM CDT

Good morning!
I guess Heather wasn't ready to give up all the extra attention she gets when she has pneumonia, because she's junky again. So we're back to the nebs and chest PT, and she'd been getting decadron (a steroid) and an antibiotic. She's behaving pretty well at night, just desatting long enough to get me out of bed and into her room, the little stinker! So I have to call the pediatrician back today and see if she needs more steroids or another x ray to make sure it's under control.

Heather had her EEG on Wednesday and seemed fine throughout the test. But when Paul got home there was already a message waiting for him, saying the test was abnormal. She's having generalized seizues, worse on the left than on the right. This is a big change from before, meaning she's having a different type of seizure and/or her meds aren't controlling them. This puts us in a tough spot, as it's possible that Heather's incerased congestion and apneas are due to seizures and aspiration, but when she's awake she's been very alert and interactive. New meds might sedate her and then she wouldn't be able to play like she has been. It's a tough call. We'll go back to see the neurologist on Friday and discuss this.

I've had a few more setbacks with my health so I've been away from home frequently. Paul's been the Chief, cook, and bottle washer lately. Our nursing coverage has taken a few hits and we're looking for more staffing. Especially for the middle of the night, as I'm having a hard time jumping out of bed to check her alarms. We have a few good leads so hopefully we'll get this all straightened out soon.

Nick and Katie are excited for school to end. We got a new sprinkler for the back yard and they love playing in it. We haven't set up the kiddie pool yet but probably will today. It's been so hot!

Please sign the guest book so we know you've visited.
Thanks
Heidi

Wednesday, June 8, 2005 6:36 AM CDT

Heather kept us busy over the weekend. Her stomach medicine was decreased to see what she would do and she had a short GI bleed. We were able to get it stopped pretty quickly but she retched all weekend nonetheless. Then on Monday she had another seizure. She's having a follow-up EEG today. We may have to change her seizure medicine. That stinks because the phenobarb has worked well for a long time. We know how she does with it and it's IV so we know she's absorbing it. We don't always know that with the meds that go through her J tube.

Yesterday we went to the developmental clinic at NEMC. We talked to a developmental ped who will be helping us coordinate Heather's developmental services and her specialists. It's a really big job. Do you believe that Heather will be turning 3 in 3 months??? She's a preschooler!

Heather has been sleeping better and not desatting as much and her lungs are clearing up. It seems like her pneumonia is just about gone. She's still on an extra 1200cc of IV fluids and a tiny bit of extra O2 at night but other than that she's close to baseline. She had labs drawn yesterday to check on her kidneys and the funny deficiencies that she gets supplements for.

She was sooooo funny in the car on the way home from Boston yesterday. Paul was driving. Heather kept saying "da da dumb" and then laughing. Paul was trying to get her to say "ma ma dumb" but she would just say "mmmmmmmm" and sign mama. This morning she is saying "da da ding" and Paul said he'd rather be called a dingbat than a dummy.

Have a great day!
Heidi

Friday, June 3, 2005 6:32 AM CDT

Hello!
Heather is feeling much better. She was actually discharged on Sunday. They decided that she did have pneumonia but there wasn't anything that theywere doing at the hospital that we couldn't do at home. She's on lots of extra IV fluid and an antibiotic and a little more O2 then usual. She's back to her fiesty self. Yesterday was the first day she's been outside to crawl around for months and she had a wonderful time. She also started imitating the sign for MAMA! She's been making lots of sounds and likes to sing along when we sing to her.

It's funny how our perspective of "we can do that at home" has changed. Right now, to keep Heather stable, she's getting 175cc/hr through her central line, we're giving breathing treatments and pounding on her back every 3 hours to keep her O2 sats up, catheterizing her every 6 hours, giving IV, J tube, and injected meds 7 times a day, weighing every diaper and measuring every drop of fluid that goes in or out, keeping track of her vital signs and changing treatment based on variations, repositioning her to keep her breathing stable, and so on and so forth. If you told me a year ago that we'd be comfortable keeping her home with so much support needed, I'd think you were crazy. But this is where we are, and it truly "takes a village" to keep Miss Heather going.

Her gait trainer should be coming in a few weeks. There was a mix-up with the paperwork so things have been delayed. Oh, don't get me started on insurance paperwork messes! I called the supply company to see if my liquid supplement was ready to be picked up and I found out that they hadn't gotten any info about a formula, but my adult diapers were approved! Diapers? Gee, didn't know I needed them...

Thanks for checking in on us.
Heidi

Thursday, June 2, 2005 10:32 PM CDT

Good evening!

Sorry it has taken us a while to update but I'll give you a short synopsis about Ms. Heather.

Heather got out of NEMC on Sunday afternoon. They say she did have pneumonia even though the x-rays came back negative for pneumonia. She is on amoxicillan for a couple more days and is on extra fluids right now. We are decreasing those as we speak.

Heather is feeling pretty good in general. She has been having ok nights and her O2 Sats. will drop once in a while.

Heidi will update probably a more desciptive version than from what I wrote. The wait will be good because Heidi took a picture of Heather outside and I believe she's putting it on her website. So stay tuned! I hope all is well with everyone.

Friday, May 27, 2005 8:45 PM CDT

Good evening,

We took a trip to our "time share" today in Boston. Heather has been having some respiratory issues since Tuesday night and haven't gotten better. She is on 2 liters of oxygen just to keep her O2 sats around 99-100. Her heart rate has been up too (140's-160's). We gave Heather extra fluid last night to help bring down her heart rate but it didn't help as much as we thought.

We called Boston this morning to see if there was anything else we could do at home and the pulmonologist said no. We had to be seen today in the clinic. We left around 12:30 PM and got into Boston a little after 2 PM. Heather had a chest x-ray and it was negative for pneumonia. They are keeping her overnight to see what she does and are doing lab work. Hopefully we can find out why she is needing so much oxygen.

If they want to keep Heather another night I will stay with Heather so Heidi can come home. Heidi's sister is up from Tennessee so I told her she should spend time with her sister.

Heather's Tuesday nurse is all done working with Heather. She is moving back to New York this weekend. It is sad to see her go so hopefully the nursing agency will find a replacement soon.

I hope all is well with everyone and keep Heather in your thoughts and prayers. Pray this will be a short stay in our "time share" and the doctors find out why she needs so much oxygen. Thank you.

On a side note (this is Heather's web site after all), Heidi is doing ok with all of her medical issues. She continues to be on a liquid diet and is still having a hard time swallowing. She still gets tired quite easily but I was very impressed with her the other night. She wanted to play a game with her sisters and she was in a good mood. I'm sure that she was tired but she hung in there and for that I was proud of her. I love you Heidi!

Monday, May 23, 2005 12:16 AM CDT

Heather is Home!

It was a crazy weekend but she's home safe and sound. They finally decided that she had some seizures after the TPN incident and that's why she wasn't acting right. She's acting fine now. They did blood and urine cultures just to make sure she was not sick and everything looks fine. The doctors did an excellent job communicating with her doctors in Boston and everything went smoothly. She'll need another EEG but we'll schedule that sometime this week.

Please keep our friend Cassie in your prayers. She is having a rough time. ma/cassie

Thank you for your prayers during this scary experience.
Heidi

Saturday, May 21, 2005 7:59 PM CDT

Good evening!

First of all, I want to say that Heidi and I had a lovely time going to the movies last night. We were celebrating our 10 year Wedding Anniversary. We saw "Monster-in-Law" and we liked it. We had friends from church come and watch Nicky and Katie and a nurse was home to take care of Heather. When we got home there was peace and quiet and all three kids were sleeping.

This morning we had a little excitement in regards to Heather. Heather had slept through the night and didn't urinate at all for 12 hours. Heidi tried cathing her where her urine was a coca cola color and her blood sugar was 39. As Heidi was putting up her protonix, she went to shut off the TPN where she noticed it was KVO. The nurse that watched Heather from 6 PM-10 PM forgot to reset the volume on her TPN pump. Heather may have gotten a half an hour of TPN instead of the 12 hours she should have had.

We gave her 1,000 cc of D5 1/2 N.S. (over 5 hours)and restarted her TPN. Heather was lethargic most of the day and her eyes had a hard time tracking especially her left one. The doctor wanted us to get labs on Heather so the nurse drew labs and I rushed them over to Baystate. During the afternoon, the doctor from Boston called and said for us to go to Baystate and have them look Heather over.

For right now, the doctors are keeping Heather overnight for observation. We'll see what they want to do in the morning. They are going to check more labs and are questioning if Heather had any seizures. She kept going from being alert to being lethargic and not tracking with her eyes.

I don't want to speak for Heidi, but I have mixed emotions about the error. On one hand, all of us have forgotten to reset the volume on Heather's pump at one point or another. So for this, I can't be mad at her. I guess the difference is when we did it we caught it within an hour or two of doing it. This was 12 hours later when we caught it and it hit Heather hard. Heather looked horrible today.

Anyways, I hope everyone else is doing well and thank you to those who keep checking in on us and keeping us in your thoughts and prayers. Talk to you soon.

Friday, May 20, 2005 5:09 AM CDT

Good morning!
Today is our 10th wedding anniversary. What a wild ride we've had! A couple from church is treating us to a movie tonight, babysitting the big kids, AND we have nursing for Miss Heather. When my friend asked where we were going, I said "OUT". When she asked me to be more specific, I said "OF THE HOUSE." It doesn't matter where we go, just that I'll be spending time with the most wonderful guy in the world!

Heather continues to do well. I put up a new picture of Heather with the music therapist. Heather doesn't seem to listen to speech but she attends to music. She loves to feel the vibrations of the guitar and a drum against her face and her feet. It's really neat to watch her with the therapist. She gets very stimulated and almost loses it but then she regains control and can continue with the activity. It's really great practice for her since she usually gets overstimulated and then doesn't respond to anyone.

Heather was supposed to have a MRI/MRS and a hearing test on Tuesday but I got a call on Monday that they were scheduled incorrectly and that they would need to be rescheduled for July. I made those appointments 5 months ago and rechecked them 3 times! Heather needs general anesthesia rather than sedation and I asked for anesthesia and they said "Yup, everything's all set." She had her neurology appt anyway. The neurologist said that she suspects that Heather has encephalopathy. She couldn't get Heather to respond to sounds either. Her seizures have been well-controlled so we're just going to get a routine EEG and leave her meds alone. Heather is already registered with the dept of mental retardation and Mass commission for the blind so there's really nothing else to do. The encephalopathy was no surprise, given Heather's huge regression last year and the fact that she hasn't shown huge improvement when you look at developmental levels. So, in the eyes of the "experts", Heather is making very little developmental progress and has profound developmental delays.

But, in our eyes, Heather has regained so much since September:

She knows who mama is
She gives and receives hugs and shows affection
She can crawl to get to a toy and shows delight when she gets what she wants
She laughs when we dance with her and uses her body to ask us to do it again
She uses a few signs to make some routine choices and smiles as she's doing it
She has favorites- toys, movies, games, songs, people
She has 2 year-old temper tantrums and can turn tears off like a faucet if she gets what she wants
She has learned to use her feet to get toys when her hands aren't working as well
She has grown into a beautiful, spunky toddler who loves and is loved by her family and friends.

So, her physical and mental development may not be fitting into the specialist's charts but Heather has enriched our lives in ways that I never considered:
The development of a close, loving family
The development of a caring, dependable circle of friends
The development of a supportive church family
The development of a sense of humor
The development of priorities and a reasonable sense of realistic expectations
The development and growth of faith in God and trust that He has a plan for Heather.

We're enjoying this period of stable health and using it to enjoy being with Heather and watching our family mature. The reality is, Heather has a serious, progressive disease, and she will not always be healthy. Every day that she can play and enjoy herself is special. Even when Heather is "healthy" it is a relative term. We must constantly make adjustments to keep all her systems working well. I often describe our situation in this way:

Heather is like a harp. She is a beautiful instrument, but she's difficult to play, impossible to keep in tune, and not portable.

Quite a trade off, but I happen to love harp music!
Take care
Heidi

Monday, May 9, 2005 8:25 AM CDT

Happy Mother's Day!
Heather is still behaving, delivering nice healthy poops several times a day. She's avoided her brother and sister's illnesses and is doing very well. HER BED ARRIVED! She loves it and has been sleeping through the night! We have to catheterize her in the middle of the night because of her bladder problems and now she sleeps right through it. She seems like she's growing longer and her hair is really filling in. She's looking skinnier so I'm going to ask the GI about increasing the calories in her TPN.

I've had quite a week myself. Heather makes her visits to New England Medical Center (her Boston Time Share as we like to call it)look like so much fun that I decided to try one myself. I was there for 5 days for lots of tests and I came home Saturday. I'm feeling much better and I got some answers about what's going on with me and some possible solutions. I've had to make some pretty drastic dietary changes and it's likely that things will have to change even more. I won't get into details because this is Heather's journal but I'll fill you in privately if you're interested.

Funny thing about sharing information. I've figured that there are 3 levels of "how are things going" kinds of requests. The "short" story is a sentence, like "We're all home" or "Doing better" or "About the same." The long story is a few sentences, like "Heather was in the hospital for pneumonia but she's home now and feeling better." The very long story is reserved for people who already know the basics about what's been going on, or are willing to hear. If someone shows interest in hearing the very long story I suggest we go out for coffee and I'll tell them all about it. The very long story can't be given over the phone or standing up. The very long story is not for those who always expect a "Fine, how are you?" answer. The hardest part about the very long story is that, for Heather, it probably won't end "happily ever after" the way we all hope our children's futures will do. But Heather's story isn't a sad story. Heather is a beautiful little girl who is loved by more people than one could ever imagine. One of the hardest yet most glorious things I have learned is that Heather doesn't belong to me, she belongs to God and that my job is to love her and cherish her and then give her back when He calls for her. It's a temp job.

Heidi

Sunday, May 1, 2005 1:48 PM CDT

All right, all right, I know it'w been way too long since I've updated. It's been kind of a crazy week, but heck, they're all crazy weeks. So much has gone on that I'll list day by day...

Sunday: Heather came home from Floating. We decided that there wasn't anything that they were doing there that we couldn't do at home. She came home on pain medicine and dulcolax suppositories. Luckily we had a nurse that night because everyone was exhausted.

Monday: Nick had his sleep study. Paul brought him since I'm not allowed to drive with all the health issues I've been having. Nick was really good and he cooperated beautifully but Paul was a little peeved that he had to miss the Red Sox game. Katie slept in my bed and boy, I think she's the one who needs the sleep study! She snores like a lumberjack.

Tuesday: Heather had her annual developmental assessment. Very sad. Last year at this time she was 18 months old and her gross motor was at 10 months, and everything else was 18-23 months. This year, at 31 months, everything is at 7-9 months. And, she's made lots of progress since her illness in September. It's scary to look back and think about how close we came to losing her. She's a great kid and I love her the way she is. It's just difficult to see the numbers.

Wednesday: We went to Boston Children's for a communication assessment. What a great pick-me-up! She did great, really showed them her stuff. We borrowed a kit full of switches and buttons to practice communicating with. The good thing about her poop problem is that she didn't have any big blowouts while we were on the road. That's what usually happens.

Thursday: I had an appt for myself, in Boston. I rode the scooter and it went very well. I think I would prefer a different seat, though. Not very padded! (the scooter's seat, mine's padded quite well).

Friday: Uh oh, bad day. Not only was there no poop, but belly pain and dystonia. We've been weaning Heather off her klonopin to try some different medication for her dystonia, so we knew we'd get to the point where her level dropped enough to allow it to break through. So we gave her a loading dose and got her level back up, then went back to her original dose. Also, Nick woke up with croup. He told me "I think I have a frog in my throat, it's just an expression though." So prednisone for Nick. Heather finally met her teacher for the visually impaired, and she was really in a good mood for her visit.

Saturday: We went to the family workshop at Perkins School for the Blind in Watertown. Heather was wonderful. And SHE POOPED! Her pooping is suddenly right back to her usual frequent loose ones. I think it may have something to do with the klonopin. If her muscles are tight that might make her belly tight too, maybe.

Sunday: I woke up with Nick's frog in my throat. My voice is somewhere between sultry and chain smoker. We stayed home from church to contain our germs. We're trying to organize Heather's room because her bed is coming! It's in but they hadn't delivered it. When I called to find out why, they said that they were waiting for the bed skirt. Ummmm, why? They wanted to deliver it all together. I asked if the bed skirt was necessary to operate the bed and she said of course not. So my child is sleeping in a rickety too small crib until we wait for a decoration? NOT. So I got to choose the print for the bed skirt, between gawdy balloons, scary hospital clowns, or plain white. Oh please. So the bed will be here Monday or Tuesday. YAY!

So she just pooped again, she's on her third pair of pants today. That's my girl!

Take care
Heidi

Friday, April 22, 2005 9:15 PM CDT

Hello everyone,

Ms. Heather is in the hospital. She went in on Wednesday and is in NEMC. Her belly is bothering her and hadn't had a BM for 9 days.

She has had x-rays of her belly, a CT of her belly, and an ultrasound of her belly and nothing seems to be showing up. I guess her spleen was a little enlarged but nothing to get excited about.

Heather has had a BM but it was after having 2 enema's and 2 suppositories. This morning she was still in pain and needed to have pain medicine. Heather has yet again boggled everyone's mind. We don't know if this pain is a progression of her disease or if it is an acute illness of some sort.

We bring Nick up to NEMC on Monday night for a sleep test. This should be interesting. Nick doesn't like anything by or near his head. I am going to stay with him if Heather is getting discharged. But then again, who knows when that will be.

Well, take care. Thank you for checking in on us. We'll try and update more later on. Bye for now.

Monday, April 18, 2005 4:51 PM CDT

IT'S SPRING!!!!!
The weather is finally nice and we took all the plastic off the windows. The cats are really happy to be able to lie on the window sills and feel the breeze. Hopefully we'll have a while before the hot weather comes.

Heather ended up having her line replaced on Friday. She stayed overnight and was home again on Saturday afternoon. It's amazing, we've never experienced the "overnight observation" type of admission. Her breathing has been really good and she didn't misbehave. The O2 has really worked wonders.

A couple little problems popped up, though. Heather's double lumen hickman was replaced with a single. This was done because the old line wasn't infected, but they couldn't put in the same size because of her history of getting scars. Unfortunately, her double lumen was the smallest size, so they had to go to a single. This will be inconvenient when Heather is well, but inadequate when she is sick. But, the old site will probably get narrowed anyway and we might as well use it as long as we can. It definitely isn't worth putting her through another surgery right now. So, we'll muddle along with this line. Heather gets 24 hour TPN and has incompatible IV meds given several times a day, so it's a lot of starting and stopping. When she's sick she'll need a peripheral IV for meds since she doesn't tolerate having her TPN stopped.

Also, Heather's belly is shut down and has been since last Monday. She often has problems for a few days and fixes it on her own, but it's day 7 without poop and hooked up to gtube and jtube bags. Today she's starting to get a little sore. We're watching her very closely.

Heather's new bed will be delivered in about a week! This will allow us to catheterize her during the night without waking her up. I'm also having a hard time lifting her out of the crib so it will be much easier for me to care for her.

Please sign the guest book so we'll know you stopped by!
Heidi

Thursday, April 14, 2005 10:16 AM CDT

Heather is feeling great! We had a very busy day yesterday in Boston. Heather had 7 different appointments. Whew! Mostly good news. Renal, cardiology, and GI all agreed that what we are doing with Heather is working, so we aren't changing anything. She saw the allergist to talk about her immune system and she is having labs drawn to check it. Her kidney ultrasound showed good growth. Heather decided that she needed 7 appointments instead of 6, so she pulled out her G tube during the night, and I wasn't able to get the same size back in, so we also visited the surgeon. She had to have the tube placement checked with dye so her tummy's unhappy now, but she'll feel better soon.

I said mostly good news... well, Heather's central line is working its way out of her chest. It's still in the right vessel but at the wrong angle. There's a little thing that looks like felt that her body should've grown around, but it didn't, and now that cuff is about 3cm outside. The only thing that's holding the line in place is lots of tape, prayer, and good thoughts. So, we need to schedule a time to have a new line placed. Any time Heather needs anesthesia it can be scary. The GI doctor and the surgeon are trying to decide if they can replace the line in radiology with sedation, or if she needs to go to the OR and have it done under general. I'll keep you posted.

BIG update about Heather's cognitive status: Heather showed us the other day that she can still understand signs, if she can feel us doing them! She is also saying NO, very appropriate for a toddler! She said NO at least 50 times yesterday. She is paying attention when I sign and she puts her hands on mine as I move them. She is trying to do some signs (movie, more) but she is having a hard time coordinating the movements. But her face and her vocalizations say it all! Her ABR hearing test will be done in May when she has her repeat MRI and MRS. She's had 2 hearing tests that I was told "she's not interested, she's not attendind to the sounds", but now that she's attending to tactile signs and communicating with us, I'm even more convinced that she isn't hearing us. But, she's in there! Her cognitive level was assumed to be at about 9 months, but in order to answer a simple question by gesturing (Where's your binky?), a child needs to have skills at about 12-15 months. I think we're only scratching the surface with Miss Heather.

Heidi

Saturday, April 9, 2005 6:15 AM CDT

Heather continues to be VERY two! She feels wonderful and she's practicing her assertiveness and self-direction, much to the amusement of her nurses and therapists. Stretching her hips and changing her diaper have become 2 person divert-and-attack sessions, and Heather is very pleased with herself when she manages to crawl away. She is putting everything in her mouth and we have had to baby proof again. She shouldn't even be able to see some of the little things she finds, but she does. It's been warm enough for her to go outside for rides, and she babbles and hums the whole way.

Medically, things are more stable then they've been for a long time. Even when she's stable, though, she's a lot of work! I often tell people that Heather is like a harp; she's a beautiful instrument, but she's difficult to learn how to play, impossible to keep in tune, and not portable. When Heather goes out, she needs her TPN, j tube feeding, and perhaps a hydration pump, urinary catheters, oxygen and an extra tank, g tube bag, supportive stroller, and medical bag, besides all the usual toddler equipment. At home, we have 4 IV pumps, the feeding pump, prone stander, various oxygen tanks and concentrator, monitors, suction machine, nebulizer, plus supplies that take over most of her room and parts of the living room and kitchen. Needless to say, we don't get out much. Still, we're very fortunate, because Heather has never been "cordless", so we didn't have to adjust to our "perfect" child suddenly needing all kinds of support. That seems to have cut out at least a little of the emotional adjustment for our family. In fact, some family members have never seen her cordless, even for a bath, and they didn't know some of the tubes can come off. Nick and Katie are very used to Heather having tubes, and they even stop her from chewing on them and warn her "if you break the tube it will make you sick!" They don't see her as a sick kid, just a kid who "eats meds through a tube", as Katie puts it. Wouldn't it be wonderful if adults could share that point of view?

I've started tackling the big winter to summer clothes swap. In washing the winter coats, I discovered that Nick has been putting rocks in his coat pockets, so now we have several very clean rocks. When I took the summer clothes out of the attic, I remembered that Katie, at Heather's age, went through a nudist stage, and all her toddler summer clothes are one-piece jumpers. That won't work for Heather! I plan on taking a trip to a second hand store for reinforcements to round out Heather's wardrobe.

On Wednesday and Thursday, I had doctor's appointments to try to figure out my own health issues. The general thought is, I have a mild underlying mitochondrial problem, which is where Heather got hers. When I had the drug reaction I was unable to bounce back because my muscles were already compensating for the metabolic problem, and that's why I'm still having trouble. The good news is, stroke and MS have been ruled out. Mentally I feel fine, and I'm no more tired than anyone dealing with a child like Heather would be, so right now this seems to primarily be a muscle and pancreas problem. It was hard listening to the doctors, though, and hearing that Heather most likely inherited her illness from me. Why did she get it so much worse when I've been fine into my 30's? There's really no way of knowing. A good friend brought over a pint of Ben and Jerry's "chocolate therapy" ice cream and we commiserated for an evening. Thanks Lin!

Please pray for all our mito friends who are struggling right now, Malisa, Natalie, Alison, Dawn and her girls, Zach, Tim and the rest of the gang, and for a long long period of good health for the kids who are fortunately doing well for now.

Take care,
Heidi

Saturday, April 2, 2005 2:42 PM CST

Heather is doing great! Right now, she's crawling around the house, complaining because we closed the doors to the bedrooms and we won't let her knock over the lamp. She's been leaving her glasses on, which is a sign that she's using her vision. Yay! She's laughing and babbling and putting everything in her mouth. It's been a long time since she's felt this good. I hope it lasts for a long time. She's been able to get up and crawl around for half an hour 2 or 3 times a day, which is more than usual. Otherwise, she swings in her swing or sits in her chair. I really think that keeping her sats up all the time has helped her brain. She's just so much more alert than she's been in a long time.

Paul is at the men's retreat for church this weekend. We've had extra nursing coverage while he's been away. I'm glad that he's had the opportunity to get out "with the guys."

I had an excellent appointment with a new endocrinologist on Friday. It seems like she's interested in mito and is willing to work with other doctors. She's doing lots of tests to help figure out how I developed diabetes so quickly and so severely. I have other appointments coming up next week so hopefully I'll have more of an idea what is going on in the next few weeks.

Tonight the clocks spring forward. Katie is already getting up at 5:30 with the sunrise. I'll miss that hour of sleep!

Heidi

Tuesday, March 29, 2005 7:26 PM CST

Heather continues to do well. She's very alert and even bucky sometimes. She bangs on the lamp with a big smile on her face! Her nurses are all saying that she's acting 2. Go Heather!

We're all adjusting to the continuous oxygen. It sure complicates trips out of the house. Now we have to bring a portable tank and a backup. The portable tank lasts for 4 hours if she's on 1 liter but if she falls asleep and needs more than 1 liter we could go through the tank in 1 to 2 hours. And the tanks are heavy, too. Hopefully we can come up with a better plan. I really want to get out for day trips this summer. The oxygen seems to be really helping Heather. She's been more interactive and really seems to have a plan when she's playing. Her pulse has been fabulous, not too low or too high, and she's getting to crawl around for 15-20 minutes several times a day.

Heather was fitted for her gait trainer yesterday. A gait trainer is really a walker with all the bells and whistles. It will hold her in position so she just has to move her legs to get where she wants to go. We tried two different kinds and Heather looked much more comfortable in the Gator, which is the one she's in in the picture. Of course, she prefers the one that is much harder to clean. Heather poops continuously when she is upright and things can get a bit messy. Yikes!

We will actually have two weeks in a row that don't include Heather going to Boston. Can you believe it? Just a routine hematology appt in Springfield tomorrow (iron infusion) and a couple therapist visits at home. What a break! Next week Heather has appointments with pulmonary and ENT to discuss her sleep study and to try to figure out what is going on. Possibly routine spine and hip X rays while we're there. The ride isn't too bad, as long as the snow is done for the season.

Thanks for stopping by.
Heidi, Heather's Mom

Thursday, March 24, 2005 7:14 PM CST

Heather is settling in nicely, and seems really happy to be home. She has favorite toys and activities and has her own routine for what to play with. She loves turning on the touch lamp (over and over again!), pulling the video tapes out of the cabinet, playing with the foot plate of her stroller, banging on the computer keyboard, and then starting over. Her legs got a bit stiff from being sick for so long but we'll have her stretched out again in no time.

We finally got the official results of Heather's sleep study. Her O2 levels are way way too low so she is now on continuous oxygen. She does have mild slep apnea but we plan on just using the oxygen for now and then repeating the sleep study another time to see if she needs pressure support. I hope we can stay with oxygen because she really seems to have gotten used to the nasal cannula and I can't imagine having to get her used to a bulky mask.

The oxygen does seem to have an effect on Heather, it makes her frisky. She's much more alert than she's been in some time and is starting to hold and explore toys again. This is big, as she has just been throwing toys off her tray for the past 6 months. She also is showing some early communicative intent, like reaching for a toy that she wants and turning away if she's done, and watching me and waiting for me to play peek-a-boo again. And, I managed to get her to watch Bear in the Big Blue House a couple times. Whoa, something other than Elmo? Could it be?

I've been having quite an adventure with my own health. A slightly high random blood sugar test suddenly turned into brittle diabetes and insulin shots 4 times a day. A nagging cough turned out to be aspiration pneumonia, which added together with muscle cramps, weakness, a sudden funny waddly walk, and acidic blood, suddenly puts me in the running for having some kind of neuromuscular disease. To think that a year ago I was working 2 jobs and now I can't hold a pencil to finish the shopping list...

At least now I have a bona fide excuse for having a cluttered house!

Heidi

"I know that God won't give me anything I can't handle. I just wish He didn't trust me so much."
-Mother Teresa

Monday, March 21, 2005 8:11 PM CST

We're home! We had to wait an extra day to go home. The antibiotic Heather was on for her UTI was resistant to the type of infection she had (ecoli). They put her on a different one and she stayed over night to make sure it was the right one for her.

We thought we had nursing on Saturday night but we didn't because of a way a certain nursing agency does post hospital visits. In a way, it was good she had to stay the extra night. Then it was only one day we had to deal with potential problems during the night.

We had nursing today from 8-4 and a night nurse from 9 P-7A. We'll have night nursing from M-TH 9P-7A for now on.

We think Heather isn't getting enough sodium because she peed out double of the amount of fluids that went into her by this afternoon. We put in a call to her doctors in Boston.

Well, that's it for now. I'll have Heidi update again. She explains things a lot better than I can. Take care and thank you for checking in.

Saturday, March 19, 2005 8:18 PM CST

Good evening!

Heather is still in Boston but we are hopefull she'll be home tomorrow. She was supposed to be home today but she decided to take a gift with her from the hospital. She got a Urinary Tract Infection. They had her on antibiotics but it was resistant to the type of infection she has (ecoli). They started her on a new antibiotic and kept her overnight to make sure this is the right medicine for her.

The reason why she ended up with a UTI is because the doctors took her off the Bactrim because she was on several antibiotics for the pneumonia. When she got done with those, they forgot to start the Bactrim up again.

In a way, it's good that she's staying another day. We didn't have any nursing tonight anways. One of the nursing agencies that we use won't send out nurses until they do a "post hospitalization" visit. This can take up to several days for someone to come out and see Heather. We are supposed to have a nurse come out Monday night so I hope someone comes during the day on Monday.

Heather continues to have issues with her oxygen levels. We are waiting for the results of her sleep test that they did the other night. She may need to sleep with a bi-pap or c-pap. We'll have to see, who knows at his point?

That's it for now. I've been trying to get things organized for taxes and to send in to the Catostrophic Illness in Children Relief Fund. We should do fairly well with getting reimbursed, especially for all the hospitalizations. Yay! Take care and thank you for your thoughts and prayers.

Wednesday, March 16, 2005 12:31 AM CST

Good afternoon! Heidi called a little while ago and said that Heather's metabolic doctor said that Heather might be discharged on Saturday morning. They did an x-ray of her lungs and they are normal. I guess the pneumonia is better now. There is still the question on why her O2 levels still dip and her heart rate is still up. They are getting a pulmonologist in to check her out.

If I heard Heidi right, Heather will be on 2 1/2 times maintenance and we'll be giving her fluid bolus' when needed. I hope I said this right.? Heather is having an overall good day today.

I know it seemed like a long time since we updated the journal, but I did write a nice journal entry the other day. Unfortunately, I think I forgot to click the submit button so all was for nothing. This was two days ago.

That's all for now. A friend of ours from church is coming over to watch our other two children so I can go to our Parent Adivsory Council Meeting tonight. I am the secretary so I should go to it. It's so good to have friends! All of our friends have been very helpful so thank you to all! Have a great day!

Thursday, March 10, 2005 10:26 AM CST

Good morning,

Heather is still in the hospital and continues to have a hard time with her breathing. Yesterday she was on 3 liters of oxygen and during the night was on 4 liters. I spoke to the nurse this morning and she's on 2 1/2 liters now. Her heart rate is still up (into the 150's) and the doctors aren't sure what's going on. The doctors did a chest x-ray again but haven't gotten the results back yet. Heather got I.V. iron yesterday because her hematocrit was 25. She also had a upper gi to see if her Fundo was still in place. It was, yay!

Please continue to pray for Heather and our family and that the doctors can figure out what's going on with her breathing (other than her pneumonia). Thanks for stopping by.

Paul

Thursday, March 10, 2005 10:26 AM CST

Tuesday, March 8, 2005 1:35 PM CST

Good afternoon,

I have nothing new to say about Heather except that she is out of the PICU and in a regular room on the 7th floor. Her new room number is 734 and the phone number is 617-636-8184. Heidi said that Heather doing well and getting better every day. She's on a little more oxygen but they think it's because she's a little anemic. I'll update more when I get more information. Take care.

Paul

Monday, March 7, 2005 9:21 PM CST

Good evening!

Heather is still in the PICU only because they are waiting for a room on the 7th floor. Heather is such a trooper. Even though she still has problems breathing due to the pneumonia, she wants to move around and be interactive. God bless her!

Her heart rate is in the 130's when sleeping and in the 140's when she's moving around. It appears the doctors have found the right combination of antibiotics and anti-fungal medication to treat her pneumonia. Heather is still on oxygen but is getting 1 liter - 1 1/2 liters.

What a difference two days make when comparing Heather to when I last saw her. She looked horrible on Saturday and I felt bad becaue of the way she was breathing. Today, she seemed to be more interactive and wanted to move around more which was a nice sign.

Once I find out that Heather is moved upstairs I'll update you again. Then I can give the new room number and phone number. Have a nice evening.

Sunday, March 6, 2005 3:55 PM CST

Heather did better last night in the PICU. She is on 1 liter of oxygen rather than 2 1/2. When I spoke to Heidi this afternoon Heather was able to sit in her chair and was watching Elmo and was moving around. Heidi hopes that Heather can go back on to the floor tomorrow sometime. The antibiotics seem to be working and her fevers are down now. I'll update more when I can. I'm on the Cape visiting my parents but will update more tomorrow. Have a great day.

Saturday, March 5, 2005 8:16 PM CST

Good Evening.

Things keep changing at the hospital just like the New England weather. The same questions keep coming around- Is Heather's pneumonia viral or fungal? Should we keep her on the floor or in the PICU? Well, here are the temporary answers.

She is in the PICU now. She went in there at 9:30 PM. The GI doctor is beginning to side with the metabolic doctor in thinking that she does have a fungal type of pneumonia. The labs aren't telling any interesting stories but they did a chest xray and her pneumonia hasn't gotten any worse and may look a "little" better than yesterdays films. As far as I know, they are keeping the same antibiotics and anti-fungal treatments the same.

We noticed that Heather gets sicker when her fever is high and then her O2 Saturation Levels go down. She is on
2 1/2L of oxygen and if she isn't on it her O2 Sats. went down to 82. Yikes!

The doctors have decided to give her motrin around the clock to keep her fevers at bay. We definitely don't want any siezures to appear.

We tried to switch today so Heidi could go home but Heather decided otherwise for us. The plan is for us to switch on Monday and Heidi to go back to the hospital on Wednesday. We will have to see.

Please keep Heather and our family in your prayers. Also, pray for a fellow TPN'er who lost his life to Mitochondrial Disease. His name was Sammy. I had just heard about the sad news the other day but Heidi had heard about it from other friends. Please pray for his family and for their loss.

Paul

Friday, March 4, 2005 8:25 PM CST

Good evening! Heather took a turn for the worse last night and today. She got very sick and looked gray. Heidi said that she wouldn't be surprised if Heather ended up in the PICU. As it turns out, Heather has pneumonia. She has 2 patches or blobs (or whatever you call them) in one of her lungs. One doctor says that her pneumonia is viral where the other says it is fungal. Go figure! Fortunately, when I spoke to Heidi around 6 PM, she told me Heather was doing a little bit better. She was moving around more and wasn't as "spacey". The doctors still don't know why her belly and side near her j-tube are sore. The kidney ultrasound looked fine and the abdomen CT looked ok except that the intestines were a little enlarged. One theory that is going around is that maybe she had bacterial overgrowth. We'll have to see. The doctors might change Heather's Bactrim to iv rather than through her j-tube. Heather still has a fever and her heart rate is still elevated too. They have her on O2 on 1/2L and sometimes on 1L. I'm going to see Heidi and Heather tomorrow and we might switch for the night. It all depends on how well Heather is doing. Talk to everyone later. thank you for checking in.

Paul

Tuesday, March 1, 2005 2:48 PM CST

Quick update.

Heather was transferred from Cooley Dickinson Hospital to NEMC this morning. They were going to direct admit her but they wanted to check her out before sending her upstairs.

Their thoughts are:

1. something going on with her line
2. something going on with her stomach

They may start her on an antibiotic but other than that I don't have anymore news. I have her phone number but wasn't able to get the room number as of yet.

Take care and I'll update later when more information comes along. Thank you for visiting.

Paul

Tuesday, March 1, 2005 7:36 AM CST

Good morning everyone! It's amazing how fast things can change, isn't it? Heather had a great day yesterday! She was interacitve, smiling, and laughing when I was playing with her blanket. She crawled around with 1/2 L of O2 and was a crazy person. Then she fell asleep in her chair and then was put to bed.

When our night nurse came over she took her temperature and it is was around 100.5 and her heart rate was 193. We called the pediatrician on call and he said to give her motrin and a 250 bolus of normal saline. After 2 hours her heart rate went down to 140's and her temperature went town to 99.8. The pediatrician said we could give her another 250 bolus and for her to see her pediatrician this morning and to get lab work done. Well, her heart rate shot up again to the 180's and had a temperature of 101.5. The pediatrician said that she should be seen so we called 911 for an ambulance. Our regular hospital was on "diversion" because of the snow storm so they took her to a local community hospital. As of this morning, they stabilized Heather and are transferring her to NEMC this morning.

Once I hear more and I get a room number I'll post it for eveyrone. It's too bad all of this is happening because the pediatrician just called and her labs look great and she has been feeling great.

Please keep Heather and our family in your thoughts and prayers. Let's hope that this will be a short visit. Have a great day! Heidi just called and they are heading to Boston (9:20 AM).

Paul

Friday, February 25, 2005 6:27 AM CST

It's school vacation week here and Nick and Katie have been home. They're so much fun! Heather has been home ALL WEEK, no doctor's appts except a quick visit to the pediatrician today for her synagis shot. Amazing! She has really had a good week overall. I had to stop her j tube feeding yesterday because she wasn't tolerating it, but she seemed better last night. It seems like she just needs a break from time to time.

Heather is calling me and reaching out to me! She says "mmm" with this really cute intonation and she does it whenever I'm around, so I think it means "mama". She reaches out to grab my shirt when I'm close to her and she rests her head on me. It brings tears to my eyes, my sweet baby girl. I know a lot of people are not terribly optimistic that Heather will get all her skills back, but I'll be happy with her knowing who I am and being affectionate. I need that.

I'm in the process of making appointments with developmental clinics to reassess her communication skills and her overall development and I'm not looking forward to hearing the results. People who didn't know Heather before describe her as having profound developmental delays, and people who haven't seen her for a while are asking if she's walking and talking, then can hardly believe how hard she's had it. It really stinks. Mito is not fair.

Next week Heather will be trying out gait trainers to help her walk. Yay! Hopefully we will have it in a month. Her hips are getting tight from sitting and crawling so much and walking is supposed to help her digestion. Also, she's been assigned a vision teacher by Perkins school for the blind who should be starting next week. So much happening all the time!

Thanks for signing the guest book. Heather has so many people who love her and pray for her, and that's what has gotten her this far.

Heidi

Sunday, February 20, 2005 8:52 AM CST

Good Morning
Heather came home on Wednesday but it's taken me this long to decide what to write. It's been a difficult, stressful week.

First of all, Heather is home and is healthy. Her new central line had a kink in it and she had to go back to the OR to have it fixed, but it's working very well now. She's feeling good, laughing and watching TV, and is even getting 20ml of formula through her j tube a day. We have a new night nurse (yay!) who told me this morning that she wasn't sure if her G tube was draining properly and when I checked it, I found that it was draining CLEAR secretions with hardly any bile. That's a good thing! Go Heather!

Monday was a very difficult day. Heather had an appointment with Dr. Korson, and we talked about her development. It's been 5 months since Heather had her regression, and we don't have any signs that her cognitive and communication skills are improving. He advised that we have her retested, consider it her new baseline, and start an intensive education program to work on relearning skills. I asked him if Heather was autistic and he said that she does have autistic tendencies due to her mito, and some of the education techniques that are used with autistic kids may work with Heather, and she could receive a diagnosis of autism for educational purposes, but it wouldn't change her underlying mito diagnosis. We may pursue this, as Heather has a lot of ground to cover. Nick also had an appointment with Dr. K and we found out that he could possibly have a mild form of whatever Heather has. Nick is stable and making excellent gains, but it makes me a little worried about what could happen with illnesses. I guess we'll take colds a bit more seriously. I had an endocrinologist appt myself and I found out that I'm a diabetic and I started taking insulin. The doctor thinks I may have a genetic form of diabetes and I'll be having genetic testing in a few weeks. I haven't been feeling that well and I'm a bit relieved to find out that it's something treatable. I was afraid I'd be told "Stress and hormones" and "relax, do something for yourself, put your feet up". HA!

Wednesday, Heather was discharged from Floating and we drove over to Children's for her eye exam. She saw a retinal specialist who had more bad news. Heather does have retinal disease, but her pigment changes aren't severe enough to cause her dramatic vision loss. She thinks that there is also cortical vision impairment going on, that something happened to the part of Heather's brain that sorts out vision. Her optic nerves seem to be working and her glasses correct her farsightedness fairly well. So, all the fixable stuff is fixed, it's the brain that seems to be the problem. Kind of fits with the developmental problems, since all the stuff happened around the same time. Heather will be scheduled for a special vision test that's done in the OR, and she'll have a brain stem hearing test done at the same time.

Please say a prayer for the families of two caringbridge babies who became angels this week. We will miss you, Dylan and Jacob. Prayers as well for all Heather's TPN friends who are sick at home and in the hospital.

Heidi

Saturday, February 12, 2005 12:48 AM CST

Heather got the new line put in this morning. Everything went well and Heather is back in the room. However, her g-tube is draining blood but this is probably caused by the stress of the surgery/ procedure. I just called Heidi (2 hours later) and I guess one of her ports is very sluggish. It looks like one of the lines is against the lining of artery (or something like that) so that is why it is sluggish. They may need to draw the line back some so it works better. Other than that, Heather seems to be doing well. Don't know when discharge will be but we'll let everyone know. Have a great day.

Thursday, February 10, 2005 7:47 PM CST

Good evening. Heather seems to be doing ok right now. The plan as I understand it, is to put a new central line in on Saturday AM at 9. Then, if everything goes fine then hopefully Heather and Heidi will be home Monday or early next week. Thank you for checking in on us and I'll try and up-date you more this weekend. Have a nice day and God bless.

Wednesday, February 9, 2005 7:52 AM CST

Good morning. Heather seems to be doing better without the line. Hopefully her labs will come back looking good and if things go to plan (ha ha) they'll put in a new central line on Friday. After that, hopefully Heather will come home at the beginning of next week. I heard from one of the local nursing agencies and they said that they founds a night nurse to work with Heather. I don't know exactly the hours or days yet but it's a start.
Other than that, we are holding our own. Katie had her 6th birthday yesterday so I took her out to McDonalds for a birthday dinner and her aunt and Mimay came over after and gave her a cake and some gifts. She also had her physical and she's doing well. She's a big girl for her age and she's solid. Must take after her daddy. She was 80th percentile for Height and 95th percentile for weight. Nicholas accompanied us to her doctor appointment and he read books the whole time we were there. He misses mommy and "baby Heather" but is handling things ok from what I can tell.
As always, please continue to pray for Heather and our family. Also, please keep all of Heather's friends in your thoughts and prayers. Please pray for Heather's neighbor at NEMC,Samantha, who also has a line infection. I swear there was a special for line infections this past week or so. Have a great day.

Monday, February 7, 2005 8:13 PM CST

Hello again. Heather's line is out now. No more being wishy-washy. They took it out around 8:15 PM and the surgical resident did it right at the bedside without anesthesia! The line slid right out. I guess Heather had a 105 rectal temperature and was shaking and was modeled. Heidi also mentioned that she looked like crap. She is off the TPN now because the concentration is too much for the iv site. She has an iv in both her feet. Heidi was joking (but not really)saying that at least they didn't lose the room that they were in. It's an isolation room and it has an ok shower and has its own refridgerator and microwave. We'll see how tomorrow goes. Please pray for Heather so her fever goes down and begins to feel better. Thank you and have a good evening.

Monday, February 7, 2005 7:59 PM CST

Good evening. I'm not sure where to begin???? Heather has a fever again today (104 F rectal)and the doctors decided that the line should be pulled today. I spoke to Heidi around 7 PM and she said that surgery couldn't do it tonight but would do it in the AM. However, Heather still has a fever and is shaking. Now they are saying that they may pull the line tonight but do it in the PICU. Heidi will let me know what's going on. A friend just IM'd me saying that Heathers line is out and is doing better so I will be back in a few minutes to post yet another message. Thank you for all your prayers.

Friday, February 4, 2005 6:09 PM CST

Good evening! Heather is now on the 7th floor and not in the PICU! She is in room 748 and the number is 617-636-1740. Her fever is down and doing pretty well. She is in a single room and she has a microwave. Heidi is coming home tomorrow and staying overnight. Then she is going back on Sunday and I'm coming home so I can watch the Superbowl! Go Pats! Nicky and Katie miss their mommy and sister so they will have a nice bonding moment tomorrow. Other than that, thank you for all your thoughts and prayers. I was surprised to hear how many kids had line infections this week. I hope all is well with you. God bless.

Friday, February 4, 2005 8:10 AM CST

Good morning everyone. Well, Heather is still in the PICU but may be going to the floor later on today. She had some seizures a couple of nights ago when her temperature was 106 but overall doing a lot better. Heidi said that she's a little anemic and they are going to watch her numbers. Currently, it is 26 and she is symptomatic at 24. But, we would prefer them to take action at 25 rather than wait until 24. Heidi was surprised that Dr. Webster came to the PICU the other day. Heidi called to make an appointment but he came up. He helps with Heather's muscles and afo's. Gi wants to start feeds again in another week or so. She'll start at a low number like 2 cc's an hour for 4 hours. They changed her anti-fungal medication and seems to be doing better. Her temperature was normal in the morning the other day but was 101 in the afternoon (a lot better than 106!). Well, that's it for now. I'll update again when I hear that she's upstairs on the floor. I'm getting ready to go to an IEP meeting for our other daughter. Have a great day.

Wednesday, February 2, 2005 12:26 AM CST

Good afternoon. Heidi and Heather made a liar out of me. When I left last night from thr ER, the plan was to send her to the 7th floor. Well, I got a call from Heidi at 12:30 AM saying that Heather was in the PICU. Apparently, Heather did something when the nurse was putting in an iv and they sent her to the PICU. As of this AM, Heather still has her line but they are using a peripheral line to give her fluids. They aren't giving her TPN right now. Heather had a fever this morning (105) but has gone down to 103. They changed her anti-fungal medicine and are hoping that they don't have to take it out. Apparently, Heather doesn't have many spots to place another line so they'd like to try and salvage this one if possible. When I find out more I will update this site. Please pray for Heather and for a quick recovery. Also, pray for Heather's friend Natalie who is also in the PICU. Thank you.

Tuesday, February 1, 2005 9:30 PM CST

Good evening. Heather was discharged from Baystate on Monday evening. However, this morning her pediatrician called and said that one of her labs showed that one of the lines developed yeast (or as Heidi would say, "The Y word"). We decided to bring Heather to NEMC (it's a long story) and they are doing labs and will most likely pull the line. Heather will probably be there for a little while so please pray for a quick visit and for the infections to go away. I'm assuming that they'll put in a new line at some point this admission but we need to make sure that Heather doesn't have any more infections or fungus. That's all I know for now. Take care and thank you for visiting.

Paul

Tuesday, February 1, 2005 9:30 PM CST

Friday, January 28, 2005 12:18 PM EST

Hello,
Heather is at Baystate Medical Center. Sure enough, she has a line infection. The bug is called enterococcus, and it's a bug that she has had often. She's on vancomycin and is feeling pretty good, but we still need to wait for the second set of cultures, to find out if she has a blood or urinary infection. The plan is to leave her line in place and treat the infection. If the infection doesn't go away or if the other cultures are positive, then she'll need a new line placed.

For now, we're sticking to our "routine" and Paul will stay the weekend and I'll go home with Nick and Katie. Nick has a birthday party to go to on Sunday, and Katie and I need to sit down and plan her birthday party. She'll be turning 6 in a week and a half!

Please pray that the infection is controlled and that we can get home quickly. Heather has lots of crawling and exploring to do.

Take care
Heidi

Friday, January 28, 2005 12:18 PM EST

Wednesday, January 26, 2005 3:35 PM EST

Hello everyone
Heather's hit a little bump in the road, but everything seems to be under control. On Saturday she had a flare-up of her intestinal pseudo-obstruction, which basically means that her GI tract shut down. It's happened many times before, but the difference this time is that she is well supported with nutrition, fluid, and meds. Her blood pressure has been good and she's alert, although not feeling too well. Today her central line is sluggish and she spiked a temp, so we're checking blood cultures just to make sure she doesn't have a line infection. She doesn't seem to get line infections, but it's easy enough to check.

I had a wonderful conversation yesterday, that just was just the right bit of advice at the right time. I read an email from the Braille Free Press, and there is a program to get free braille children's books. The woman I spoke to on the phone had been blind since birth. For some reason, I just started venting about how life isn't fair and how different things are with Heather now. I told her that the thing I missed the most was that Heather doesn't smile in pictures. She asked me, "Well, do you tell her that your taking her picture and that you want her to smile?" Gee Whiz, no I haven't! I guess I really need to stop whining about how much is different and just learn to do things differently. We talked about Heather's fear of open spaces and crowds, and that she doesn't crawl across a room, she sticks to the perimeter. All these new behaviors have reasons, and I need to work with them. Suddenly, I'm seeing Heather as the smart little girl that she is, for figuring out all of this before I did!

We have a snow day today and we're baking cookies. It's lots of fun being home but boy, am I ready for school tomorrow.

Take care
Heidi

Wednesday, January 19, 2005 6:03 AM EST

Good morning,
It's been a long time since I've updated, and I'm happy to say that we've been HOME the entire time! Heather has thrown us a few curve balls, as usual, but it's been stuff that we can deal with at home. I'll try to back up a bit and give you the whole run-down:
On Jan 5, Heather saw the orthoptist. She does functional vision work (think of it as a PT for eyes). Heather's eyesight has continued to deteriorate. Her vision is now 20/360 with her new glasses on. She also has something called a paradoxical pupil response that happens with blindness. That means that her eyes aren't responding to light like usual. I had a hard time with this appointment, so I did what any Mom would do- I called to schedule a second opinion. (Isn't that the way it goes? We search for a doctor to tell us what we want to hear!) I brought her to see a neurologist at Boston Children's who is supposed to be a big name in the mito community. Incidentally, she is the same neuro who told us a year ago that Heather had CP and that things would straighten out on their own. It was an interesting visit. She confirmed Heather's mito diagnosis, confirmed the RP, and gave a few minor recommendations about lab tests and supplements, but nothing earth-shattering. However, she did say that she thought Heather's cognitive function may be intact and that she's just responding to her vision loss by relearning lower level skills. She also wants to do a brainstem vision test and hearing test. I refused to bring her to Atlanta for a fresh muscle biopsy so she recommended a liver biopsy but I discussed it with Heather's GI and he thought it would be a bad idea. Heather's platelets run low on a good day, why invite trouble? We may consider redoing the muscle biopsy in Boston and they may be able to use a different preservative and send the sample to Atlanta the same day. I would agree to that.
Heather's regular Neuro is leaving Floating! I guess the whole neurology dept. is jumping ship (literally as well as figuratively). Heather started having little seizures again but we think it was because her phenobarb level was a little low. She'll be having a 72 hour EEG at home next week. That should be interesting. I hope she'll be able to hold her head up with all the stuff on it. It might end up being an Elmothon.
Heather's certificate of blindness and letter of DMR eligibility came the same day. Talk about a double whammy. But now we can set up the adaptive communication eval and look into little computers to help her tell us what's on her mind.
GI-wise things are going fine. Today she'll be getting 44cc of neocate. OOOOOOOOOOOH! I'm so excited about 3 tablespoons of formula going into my child and not making her sick. Pathetic, I know.
Heather had an episode of "peeing out" before she came down with a cold. Her kidneys decided not to concentrate her urine and we had a bit of excitement keeping up with them. She turned around on her own and now she's back to baseline. She did quite well with her cold. Mom and Dad, however, were a bit tired. She has a hard time at night so we had to take turns caring for her. We usually take shifts but we get a bit more sleep than we did last week. We did notice something interesting, though. Heather was on continuous O2 and she was able to move around and play much longer than usual. Her play was more purposeful too. We've known that she desats with movement for a long time, but I never actually tried her on low flow O2 when she wasn't sick. She saw the pulmonologist yesterday and he said to go ahead and keep her on O2 when she's moving around. He ordered a different O2 system that's lighter and hopefully we'll get it this week. So, that's another tube to lug around, bringing the total to 5. But Heather's never been cordless and she doesn't care. If it helps her play and explore, it's worth it. It's just hard to see it on her face. I'll have to experiment with tape and such so it doesn't do a number on her skin.

The pulmonologist had an interesting thought. He thinks that Heather's sat issues while sleeping and in the car are probably obstructive (floppy throat and weak neuromuscular signals) but the desatting with activity may be blood related. Something to do with her RBC's and how well they pick up, carry, or release O2 molecules. That's pretty interesting because my Mom has the same issues and has been on O2 for years even though no one has found any lung problems. She has the same weird blood stuff as Heather and she had the same kidney issues before she went on dialysis. Hmmmmm, need to change the filter in my gene pool!

Tomorrow Heather is having an eval by a PT at Baystate. We need to find a PT to manage Heather's orthotics and equipment after she turns 3. I didn't realize she'd get an appt so soon. There's more and more red tape when it comes to Heather's walker. Now they're suggesting she get a gait trainer but I need a PT to choose a brand and figure out which bells and whistles she needs. Then we start the whole insurance thing again... ugh.

We had an estimate done for Heather's new room. We applied for a grant to build a ramp and an accessible bedroom for her. Now we just have to wait for all the pieces to come together... say a prayer!

Thanks for all the thoughts and prayers. Heather is the healthiest she has been in a long time.

Heidi

Sunday, January 2, 2005 9:33 AM EST

Happy New Year!
Call us crazy, but we decided to take a little trip to Cape Cod to visit Nana and Grampy for the New Year holiday. Heather has been mostly behaving herself for the trip, after having some 'technical difficulties' during the week. On Monday, Heather's central line sprung a leak and we had to bring her to Baystate to have it patched. On Thursday she just didn't seem right and it turned out that half her TPN volume didin't go in so she was way behind on fluids. We bolused her lots of extra fluids and she perked up, but her gut shut down and she started retaining urine too. She's been resting all weekend and things seem to be going better so I'll restart a tiny bit of formula again today. So much tweaking and nudging.

Nick and Katie have had a wonderful vacation but I think they're both ready to go back to school. Katie can't wait to show her teacher her missing tooth and Nick wants to talk to his 'girlfriend' Kelly. She's a little girl with glasses like Nick, how adorable!

It will be a busy week with appointments that have been put off for a long time. Monday Heather gets her hearing checked and a dentist visit, Wednesday she has a functional vision exam to see what useable vision she has, Thursday she goes to Shriners for a second opinion on her dystonia, and Friday she gets another iron infusion. Lots of running around, but it's all pretty close to our house.

Thank you for all your prayers for Heather. She's doing well right now and we hope to continue this trend of staying home.

Take care
Heidi

Sunday, December 26, 2004 11:48 AM CST

Merry Christmas everyone!
Our computer is still broken so I'm updating from a friend's house. Luckily, we'll be getting a second hand computer soon. I feel so out of touch!

Here's an update... Heather spent an overnight at Baystate and then went home. She was admitted to New England Medical center the next day. She got a blood transfusion and 5000ml of fluid and felt MUCH better! It looks like her gall bladder isn't functioning well. It has the same motility issues that her intestines have, plus TPN isn't so good to gall bladders. The good news is that her stomach isn't bleeding any more and her appendix looked fine. So, she spent a week or so at her "time share" in Boston and then came home again. She's hanging in there at home, except she has a cold, so we're back to nebulizer treatments, chest PT, oxygen, and lots of tissues. She has a pretty good cough so I think she'll do fine.

Heather's anemia turned out to be regular old anemia of chronic disease, plus iron deficiency and possibly as a result of her autonomic problems. Her bilirubin went down after she started taking actigall, a gall bladder/liver med that we heard all sorts of lukewarm reviews about, but it seems to work for her, thank the Lord! She's getting weekly iron infusions and shots of erythropoietin three times a week. They're hoping that the shots will help her anemia as well as help stabilize her BP. I sure hope they work!

Thanks for checking in on Heather. I hope that I'll be able to update frequently again really soon.

Take care
Heidi

Saturday, December 11, 2004 10:14 AM CST

Hello everyone
Heather is taking a short vacation at Hotel Baystate. She had a really good week but on Friday she had belly pain and looked pretty yellow. She is quite anemic and her bilirubin is up. Her liver and spleen are enlarged and it looks like she may have some type of auto immune hemolytic anemia. Right now the local docs are just watching her to make sure she stays stable. It sounds like this may just be another mito issue that will unfold over time, so we may go home tomorrow and do more investigating outpatient. I hope so.

Heather is indeed legally blind and we've already hooked up with vision services. It looks like her vision will continue to deteriorate so we are going into overdrive to try to protect her hearing and I am also trying to find out how we can control her autonomic symptoms so that she can spend more time on the floor. She doesn't really get much out of sitting in her chair. The new info about her vision really explains why she hasn't wanted to walk, and why she stopped signing and giving eye contact. I know that it will hit me hard at some point, but I've been too busy to really sit down and grieve this new disability.

We had an interesting discovery on Thursday, Nick is allergic to peanuts. Luckily we could control his reaction with some well-timed benadryl and a quick trip to the pediatrician's. It will be interesting trying to plan Nick's meals, as he eats peanut butter at least 3 times a day.

I've been out of the loop as our computer officially bit the dust, but at least I have computer access while Heather is inpatient.

Take care
Heidi

Monday, December 6, 2004 6:36 PM CST

Hi All
Our computer is doing a terrific impression of a paperweight. It's been a while since I've been able to update or visit any of Heather's caringbridge friends and I apologize.

Heather is hanging in there, with some tweaks here and nudges there. She is back to 2 times maintenance fluids (it takes twice as much fluid to keep her body working as it would for another child of her size.) We are really keeping the pampers company in business! The problem seems to be her kidneys. They are letting too much protein out so her blood doesn't keep the fluid in like it should. The doctors are discussing possible treatments but for now she's doing fine as long as we give her massive amounts of saline. She saw the urologist last week who said that she had a neurogenic bladder and that we should keep up with cathing and she doesn't have to see him until next year. Her DMSA scan showed some damage to her left kidney but nothing dramatic. She sees the kidney specialist every 3 months so the damage will be monitored.

Heather's g tube started giving us trouble. She started bleeding from inside her stomach and around the tube. It turned out that she outgrew her tube and she had a new one placed, not a big deal, a lot like changing an earring.
Heather is getting anemic again but it's probably just her regular anemia and not from the bleeding. She might start erythropoetin shots to cajole her body into making more blood. It's apparently safer than increasing her IV iron.

We had some difficult news on Friday. Heather's developmental skills are at about the 8 month level. It's hard to imagine that 6 months ago she was age appropriate in mst things, she just happened to use sign language instead of speech and walked with a walker. I really didn't want to know the numbers but we are applying for services from DMR and we needed to give them the actual developmental levels. I understand that they're just numbers, but it represents how much she's lost. Her vision could have a lot to do with it, as could her dystonia getting worse. I'm very hopeful that a good stretch of health could help her regain some skills. Keep the Purell flowing!

Lots of mito kids are having a very tough time right now. I've been trying to keep in touch (and it's been difficult to do that since my computer keeps having mini-meltdowns). By talking with other families, I can see how fortunate our family really is. We may not have a fancy house or a nice bank account or a flashy lifestyle, but we have caring friends, a supportive family, and lots of love. I am so fortunate to have a wonderful husband who is just as involved in Heather's journey as I am, and a great medical team who values our input and respects our wishes to keep Heather at home as much as possible. Heather's medical conditon is not great, but we're doing all we can to keep her comfortable and to keep her life as 'normal' as possible. Mito is a terrible disease and although I hope for a cure, I also recognize that "it is what it is" and I cherish the good days and tolerate the not-so-good days. The Lord has big plans for Heather.
Take care
Heidi

Friday, November 26, 2004 4:33 PM CST

Hello All,
Happy Thanksgiving! We've been having some 'technical difficulties' with our computer, but it's cooperating for the moment. We had a nice quiet holiday, with lots of food and lots of rest. Heather joined us for part of the meal and enjoyed chewing on some iced teethers. She threw around a few pieces of bread, too.

Heather is settling in at home. I'm not sure what to say about how she's doing... lots of things have changed in the past few months. She used to walk with her walker and now she uses a stander a few times a day. She used to tolerate tube feeds and now she's draining from both her g and j tubes. She used to tell us what she wanted and now she doesn't even look at us if she walk in the room. She used to play with the magnets on the refrigerator and now she has a hard time holding onto toys. Too many "used to's."

Communication has become a big problem. Heather lost her fine motor control, and most of her signs. Her vision seems much worse and she can no longer identify pictures. She can choose between two toys but then she has a hard time playing with them and ends up tossing them. Her eye contact is almost non-existent, and when she tries to look at me she rolls her eyes way up. She looks at lights mostly. We'll be starting services with a vision teacher to help us work on communication and play.

Her gut just isn't working. She rarely has bowel sounds and nothing is passing through. Still, her labs look OK and she isn't uncomfortable. It seems odd to have her acting OK with her gut shut down like this. It's never been this severe for so long, but she doesn't seem to mind. As long as her liver doesn't get any crabbier than it is now. Yellow isn't her color. The autonomic problems are pretty debilitating, but when haven't they been? Everyone's gotta have a schtick, and this must be hers. She's a tiny preemie in a 32 lb. 2 year-old's body. Pulse, BP, O2 sat, temp, color, blood sugar, tone; these are all on their own circuits and come on and off line about as regularly as my lousy, overworked computer does.

On the bright side, Heather's had a HUGE growth spurt since her TPN was changed 2 months ago. She's gained 9 lbs and grown 5 inches since April! Now she's 34 3/4 in and almost 32 pounds. That's bigger than Nick and Katie were at her age! She's getting pretty hard to carry around, with her spasticity and all that weight. We seriously have to look into home modification, as she won't be a toddler forever.

I'm cautiously optimistic that the storm clouds may be receding. Most of Heather's serious illnesses have been caused by UTI's and aspiration pneumonias, and now we've fixed both problems. Her hair and fingernails are growing and she's awake and alert at regular times. She has finally given up that morning nap... shucks! So now we just pray that she doesn't catch any regular kid germs from her brother and sister. We purell them the second they step through the door!

I put up a picture of Heather in her stander. She is doing much better and can stand for several minutes. She also is crawling a little and can W sit for a few minutes. She giggles as she crawls around, it must feel good!

Thanks for stopping by to see Heather and for all your thoughts and prayers.

Take care
Heidi

Tuesday, November 16, 2004 8:04 PM CST

Heather is still home. Yay! We did go to the ER on Sunday afternoon because she was lethargic and she had a black poop. Dr. R. wanted us to get bloodwork done because she did have a bleed in her stomach after her surgery so he wanted to double check her lab work. Overall, her labs were pretty good and her liver numbers were still up but lower than they were at NEMC. It is kind of weird. Heather is more talkative and is smiling more now since we aren't feeding her (her intestines aren't working). We go to NEMC on Thursday and visit GI, Rehab., Surgery, and going in for a test. Hopefully, we will have a plan for Heather in regards to her GI issues. That's it for now and we'll update everyone on Thursday night when Heidi and Heather get back from Boston. Take care!

Sunday, November 14, 2004 10:06 AM CST

Hello everyone. Heather is home now. She came home Thursday (11th)late afternoon. She's doing pretty well right now. We are still finding nurses for Heather and we are a little overwhelmed but overall we are happy that everyone is home now. Heather woke up this morning with a little cough so we are going to keep an eye out for her. Heather is very happy to be home but will have a busy day on the 18th as she has several follow-up appointments and a test to do at NEMC. We will update more later but for now Heather is hanging in there. Thank you for all your thoughts and prayers. God bless.

Wednesday, November 10, 2004 8:57 PM CST

Hello everyone. At last, Heather will be coming home tomorrow (Thursday). Liver numbers are still up so we have begun feeding her so we can stimulate her liver. We did pedialite yesterday and GI wants to go 1/4 strength today. Once again, we are coming home to practically no nursing. We were told that we had nursing on Friday and Monday and that was it until Tuesday morning. I found out today that the nurse we were getting on Friday and Monday is working 8-12 on Friday and she isn't working on Monday because she had requested that day off. We were told that our regular nurse is on vacation from Thursday to Monday. Furthermore, the nurse that was supposed to work with Heather from the other nursing agency took another job all together so we are back to square one with this nursing agency. Fortunately, we are blessed to have wonderful friends and family that have and continue to help us out. A big thank you goes out to all of you. Please continue to pray for Heather for she still has a few issues to get over and also pray for another mitochondrial child, Natalie, who is back in the PICU where Heather is staying. Take care for now.

Friday, November 5, 2004 8:58 PM CST

Heather had a much better day today. She was able to sit in her chair for several hours and she even laughed while watching her "Signing Time" video. Heather's incision is infected by two different bugs. One is the same as the kidney infection so they added a second antibiotic which seems to be working. The doctors opened part of the incision and packed the hole with gauze. They did this to let the puss out. Heidi told me that Heather still looks a little yellow and it clashes with her hair. They also decreased her phentonyl (her pain med) since she is doing so much better. I guess while Heather was in the playroom the elevators stopped working. They called someone in to fix it and they had to operate the elevator manually. Apparently, Heather wasn't to happy because she was late for her nap. GI wants Heather to tolerate her J-tube medicines before she goes home. Heidi talked to Dr. Korson about fluids at home. We think having one and a half times maintenance at home is probably baseline. We can increase fluid to two times maintenance if she needs extra fluid. Dr. K. is happy that Heather is getting better but acknowledges that it will take some time. That's the update for today. Heidi will come home Sunday afternoon and I will stay in Boston for Sunday night. Heidi wants to come back Monday so my stay will be brief. Thank you all for all your thoughts and prayers. They are appreciated!

Wednesday, November 3, 2004 7:28 PM CST

Hello everyone. Heather had an interesting day today according to Heidi. Well, the doctors took out her staples and I guess she had oozing/ puss coming out from one section of her incision site. The oozing has stopped for now but they are keeping an eye on it. We found out that one reason why Heather still isn't feeling well is that she has another UTI. The doctors (GI) think that she probably had a kidney infection rather than a UTI. They did a CT of her belly which showed an enlarged spleen and the walls of her intestines were thicker than they should be. We don't know what this means yet but we hope to know soon. Furthermore, Heather had a "dystonic episode" and it lasted for 2 1/2 hours. OUCH! She had her usual leg cramps, arching her back and neck, cramps on her side, and her eyes did the nystagmus thing. I guess her pain med (I think) causes dystonic reactions and guess what stopped the dystonia? Ready for this......benadryl. We were surprised too. On a positive note, Heather was able to finally sit in her chair for an hour without retching or anyting. Have a great day and we'll keep you posted on new findings.

Sunday, October 31, 2004 8:38 PM CST

Happy Halloween! It was a fast paced day at the Coleman household today. I brought the kids to my sister-in-laws so I could visit Heather and Heidi at NEMC. Heather looked a lot better today and seemed to be in less pain. However, she was doing a lot of retching and needed to be suctioned quite a bit. The bleeding has stopped and they think she has pancreatitis and that's why she had bleeding. Hopefully the retching will slow down/ stop very soon. It was nice seeing Heidi again. I brought up some goodies for her. After I visited them I went back home and picked Nicky and Katie up and then we went trick or treating. They had a blast! Katie was a beautiful princess and Nick was an xray. Heather has been moved to the medical floor now. Her new room is 754 and the new number is 617-636-8242. That's it for now. Oh, Heather pulled one of her Freddy Kreuger episodes the other night. During the night, Heather's TPN came unattached and her clothes were covered with blood. This is the second time it has happened to her. It is weird how it does that????? Have a great day!

Saturday, October 30, 2004 7:55 AM CDT

Good morning! It's been a while since our last update because our computer is on the fritz eventhough we get glimpses of life like we are right now. Heather finally came home after 3 weeks in the hospital but needed surgery to fix her hernia and nissen. She came home the 18th but went back the 23rd because she was lethargic and in pain. She had her surgery on Oct. 25th and they fixed her hernia and nissen. They didn't do the piloraplasty or lower her intestines, the surgeon felt it was unnecessary. According to the surgeon, he was "gratified" by doing the surgery and said that the hernia twisted and the top part of her stomach is dead. He said that 1/3 of her stomach was in her chest. Needless to say, Heather has been in a lot of pain. She is starting to move around more but it still in pain below her incision site. She bled through her g-tube and is getting medicine now. She is in the ICU and hopefully she'll be brought to the medical floor on Monday. We will try and keep everyone posted. Thank you for all your thoughts and prayers. Talk to you soon.

Wednesday, October 20, 2004 2:04 PM CDT

Hi All
So sorry it's been such a long time since I updated. It's been a wild time, plus our computer is starting to complain that it needs to be overhauled.

I'll try my best to catch you up from the beginning of last week. Here it goes...

Heather's MRS results cam back. No sign of Leigh's but they're abnormal, not sure what the chemical problems actually mean. Apparently they don't make sense. Leave it to Heather! She is much more alert and has regained some signs, plus is becoming a bit demanding when she doesn't get what she wants (which is a good sign!) Her dystonia seems a little worse to me, and she isn't walking. She'll be using a stander to let her bear weight on her hips without someone holding her up.

Heather continues to be cathed for her neurogenic bladder. She's very cooperative. We get more urine when she's been lying down rather than sitting up. She's still dribbling all the time. Shucks, I thought we'd save on diapers! The DMSA scan of her kidneys was never done because Heather doesn't respond to versed. She thought she was given a double espresso instead of a sedative. It took a few hours to get her off the ceiling. Renal tubular acidosis was finally confirmed, although it has been suspected for a long time. She's already being treated for it so it's not a big deal.

I've done more research on retinitis pigmentosa and the thought of Heather's vision declining is very scary. She already has low vision but it does seem like it's gotten worse lately. Hopefully her EI therapists can give suggestions for helping Heather continue to learn through her other senses.

Heather's GI system continues to be pokey although she's steadily tolerating more every day. The manometry testing was done and Heather did fine with the anesthesia. She didn't tolerate all the pedialyte that the manometry catheter was putting out so they had to shut off 2 of the probes. Still they were able to see what they needed. Heather does indeed have neuropathic pseudo obstruction, like the GI thought. She has gastroparesis, which means that her stomach doesn't work at all and doesn't respond to medications. Her intestines work poorly, sometimes moving the food up instead of down, but they did respond to sandostatin, so medication may help her.

She also had an upper GI test done. Her hiatal hernia continues to grow and now is in danger of strangulating. The fundoplication is undone too. So, on Oct. 25 she will have surgery to "overhaul" her GI system. The hernia will be reduced and the diaphragm possibly patched, the fund will be redone, she will have a pyloroplasty, and the J tube will be moved down to a healthier part of her intestine. She will be in PICU after the surgery and we have no idea how long she'll be in afterwards. It's really up to her.

Last weekend was quite interesting. The original plan was for Heather to be discharged on Friday, but there was no home nursing available. Paul and the kids came up and we ended up staying in Tremont House, a hotel across the street from the hospital. Early Sunday morning, the fire alarm went off and we were ordered to evacuate the hotel. The kids were very excited about the "fire drill" and had a great time. (They just had the whole fire safety thing at their school.) We went across the street and waited in Heather's room for the all clear. They thought it was really neat that people were in their pajamas in the street! We found out that there was an electrical fire in the hotel that knocked out the power and water. Paul was allowed back into the hotel to get our stuff and he had to walk up to the 8th floor in the dark, with a glow stick to see where he was going.

Thanks for checking up on Heather! Prayers please for Gwen, Mak, Jeremy, Natalie, Kyle, Kody, and Sam, who are sick; and Ian and Sean, who are recovering from surgery.

Take care
Heidi

Sunday, October 10, 2004 8:32 PM CDT

Hi All
Sorry it's been so long since I've updated. We're still at NEMC, this is day 15 of watching the same elmo tapes. Heather refuses to watch any elmo videos or any other TV programs, so the elmothon continues. I'm starting to lip synch with the sound track, yikes!

Heather's angels have been working overtime. We've gotten a lot of good news. First, Heather's brain MRI shows no signs of disease progression. Her EEG looks even better than it did in August. And, she's starting to interact and communicate again. Her stubbornness is coming through. The repeatedly signed "all done" to the occupational therapist when she didn't want to play. She remembers the funny parts in her movies and smiles in anticipation. She has started to sign again and is babbling sometimes too. Heather's liver continues to do well and her kidney trouble is being well managed with medicine.

There have been some changes in Heather's condition that we're trying to adjust to. Heather's dystonia has gotten worse and she has a lot of uncontrolled movements all over her body. It makes it hard for her to use her hands or move around. We may have to let her regain strength in her legs by using a stander, kind of like an "exersaucer" for big kids but not exactly. Her movement problems are making it a little harder to sign and much harder to say words. But her movement problems aren't stopping her from letting us know what she wants!

Heather's bladder isn't working right and we're helping her by catheterizing her 4 times a day. She doesn't seem to mind at all and sometimes will even sleep right through it. The biggest adjustment will be for Paul and I, figuring out times to do it that will allow us to sleep through the night. Heather's on bactrim to prevent infections, too.

We found out that Heather has retinitis pigmentosa, an eye disorder that can affect night vision and peripheral vision. It isn't that bad and progresses slowly. It runs in families and is actully pretty common. The reason that this is significant is that it can help to narrow down the list of mitochondrial disorders that Heather might have.

Heather has been having problems with anemia. Her blood counts and iron counts have been very low. She got IV iron a few days ago. If her blood count doesn't improve soon she may get a blood transfusion to get things moving in the right direction.

Heather's gut has been slow to get back to business. She's finally tolerating 5ml of pedialyte per hour, but has a hard time with 10ml. Next week she will have manometry testing to try out octreotide, a medication that may help stimulate her intestines to move the way they should. We've been reminded that Heather will probably be on TPN long term, but we're hoping to give her as much entral food as possible to keep her GI tract happy.

That's the latest. I'll update after the testing on Tuesday.

Thanks for all the prayers and happy thoughts.
Heidi

Sunday, October 3, 2004 7:51 PM CDT

Today we had the Mito-What? Run/Walk and it went very well. It was a 3 mile race and I walked with Nicky and Katie and some friends of ours. It was a beautiful day and great companionship. Heather asperated this morning from her "feeds" (pedialite) and now the GI doctors are going to figure out what they want to do with her in regards to feeding her or not feeding her. They don't think she'll get pneumonia because she's on rocephin and vancomysin. Heidi has been doing straight-caths on Heather and I will need to learn now too. Heather's been getting temps. but they think it may be autonomic but are still checking just to make sure she doesn't haven't an infection or a line infection. I guess they are saying that Heather does have RTA but are trying to pin point which one she has. My brain isn't working too well now because I'm tired from the walk. Thank you for your continued support and prayers. Heidi, or I, will update you again very soon. Take care.

Thursday, September 30, 2004 6:00 PM CDT

Just a quick update on Heather. Heidi said that Heather had a better day today than yesterday. A bunch of doctors came in and said their little "shpeel".
The GI doctor thinks that Heather had a "Mito Flare-Up". Neurology said they are looking for something and just not saying it is just a Mito thing. They want to rule things out. Heather will be getting a MRI or an MRA tomorrow on her brain. She may get a spinal tap too but Heidi wants to talk to someone about sedation. Urology said that it does sound like she has bladder retention and gave us some options. The one that sounds the best (for right now) is to catheterize her 1-3 times a day to empty her bladder. Endocrinology said that it could be this, or this, or this, or this, or it could be something autonomic. This sounds helpful huh?
This is all the news for right now. It sounds as though Heather will be in Boston next week but hopefully she'll be home soon.
The Mito-What? Walk-a-thon is Sunday and we're supposed to walk in it. Our team of 5 has shortened to 3 so our other two children and myself will walk it. Wish us luck and thank you to all those who donated their money to UMDF for finding a cure to Mitochondrial Disease.

Wednesday, September 29, 2004 6:22 PM CDT

I just returned from Boston (6:20 PM) and talked to a few doctors. Not as many as I hoped to but I did talk to Dr. Korson. He is such a nice guy. Heather's regression in motor skills may be attributed to her being sick so often that her body hasn't had a chance to heal. Or, it may be a progression of her mito. It's hard to tell at this point but he wants neurology to look at her so they can rack their brains together. He also mentioned (I hope I get this right) that he wants to get rid of non-essential proteins in her TPN and to put essenstial proteins in her TPN instead. Please don't ask me about the difference. I was a little confused. I guess one is something that is automaticly (sp)processed in the body and the other is taken externally and put into the TPN (or something like that). We also have to try and keep Heather from getting sick. Easier said than done but I understand what he means.
The bladder issue is still an issue. Dr. Korson said that this may also be an affect from the mito because the bladder has muscles and it needs muscles to push the urine out of the body. In Heather's case, her bladder doesn't push the urine out at the right time and it keeps expanding. Once it can't expand anymore, she pees but doesn't get all the urine out. Hence, this may be causing the infections and the excess UTI's. This made total sense to me.
I had to laugh because it seems like every known specialist to man will be visiting Heather during this hospitalization. The list keeps getting bigger. I don't believe Heather will be getting out anytime soon. With all these consults from specialists I quite doubt they will be home by this weekend.
I, and possibly Nick and Katie will be doing the Mito-What? Walk-a-thon this Sunday. Please pray for Heather and for Heidi and for me and the kids so that we may tackle any obstacles that we face within the next several days. Thank you.

Tuesday, September 28, 2004 8:25 PM CDT

Heather had a pretty good day today according to Heidi. Heidi spoke to Dr. Korson who believes that Heather's issues are a stress response from being sick and her body is taking a while to get back in line. He said that the goal is to try and keep Heather healthy and to not stress her body.
Neurology, GI, and Immunology want to look at Heather and Dr. Korson wants to look more into her bladder because of all her UTI's. They did a ultrasound of her liver, gall baldder, and her bladder. They looked at her liver because her LST's were elevated (went from 30-120). When they looked at her ball bladder they said it has a "wall" in it. It may be an annomally (spelling?). When they looked at her bladder it was quite full even though she did a big pee minutes before the test.
I will be visiting them tomorrow so I'll update the webpage tomorrow night when I get home (unless Heidi beats me to the punch).
Thank you for visiting!

Monday, September 27, 2004 7:10 PM CDT

Hello family and friends,
Heather wanted to go on a vacation after her birthday and went to Hotel Baystate (aka Baystate Medical Center). She was admitted on Sunday morning because she was very lethargic and her stomach stopped working. She also was having headaches and seemed in pain when we gave her feeds and medicine through her j-tube.
Heather is now on full TPN and no feeds as for now. The doctors at Baystate aren't sure what is going on with Heather. All her labs came back normal except her urine test showed she has another UTI. They re-did the straight cath but I don't know what the results are.
Heidi and Heather are going to Boston tonight and staying at New England Medical Center. Hopefully, we can get some more answers and maybe somemore testing to try and pin point what kind or type of mitochondrial disease Heather may have.
Thank you for all your thoughts and prayers. We appreciate it.

Paul

Saturday, September 25, 2004 5:02 PM CDT

HAPPY SECOND BIRTHDAY HEATHER!!!!!

My baby turned two today. She was born at 2:42 AM, after the doctors could not keep her heart rate up and my blood pressure was falling due to the placental abruption. The doctors told Paul "We're stabilizing your wife but we're worried about the baby." She was blue and stunned at birth and we were told that the first 24 hours would be difficult. In true Heather form, she perked up and started moving around, breathing above the vent, and showed her spunk.

This morning, Heather was also up at 2:42, this time retching and backing up formula. She also had a headache and screamed when I put the tylenol into her j tube. Zofran helped her feel better, but it wasn't a good start to her B-day. It was just not a good day. She wanted to swing in her swing but didn't have very stable head control. She watched the other kids and finally fell asleep after we sang to her. She woke up after everyone left and now she's contentedly watching elmo videos. I noticed a little runny nose, perhaps she's coming down with a cold?

It was bittersweet watching the other children at the party. One child was Heather's age, also a 29 weeker. We met in NICU and shared many experiences with her family. Their daughter also had apnea and had an event at home and was on a monitor. She had feeding difficulties and her Mom pumped just like I did. She started out with such a similar story to Heather's... now she's a healthy happy two year old, walking, talking, eating, being sassy. Pretty funny, though to have friends with kids with chronic illnesses. Out of 14 kids, we had 4 mickey buttons, 3 central lines, 4 kids with life threatening allergies, and 8 with developmental delays. Working together, we could have outfitted an ER and a special ed classroom. Weird.

So, we'll be watching Heather closely tonight. If she starts getting sick we'll be going to Boston for monitoring rather than riding this one out at home. There, they'll tweak her treatments to find out the best way to help her stay well. I hope that she can hold out a little longer, because her doctor won't be in on the weekend. Of course, it would be even nicer if Miss Heather decides to get over whatever is bugging her without fanfare.

Take care,
Heidi

Saturday, September 18, 2004 7:32 PM CDT

Hi All,
It's really been a week of watching and waiting. Heather's TPN was changed and she's getting much more fluid, and we definitely see improvement with her blood pressure and pulse. The seizures seem to have stopped so they may have been related to her low BP. She's getting much less sugar in her TPN too and that has helped her blood sugars be more stable, and helping her hang on to fluid a little better. For now, the plan is that she will not be going to Boston next week unless she gets worse, has more seizures, or shows signs of infection. This means we will be able to have her birthday party on Saturday. Yay!

We had some excellent news on Friday. Heather had a brain MRI on Friday and the preliminary report showed that it's NORMAL! This really is a miracle given all the events that she has had. We're very optimistic that all her skills will return and she can continue to make developmental progress. Her OT, PT, and speech services have been increased to once a week. She's starting to use signs to label things she sees and it won't be long until she's using them to communicate again. She won't walk yet but she loves to stand. I can't wait until she starts smiling and laughing!

Prayers have been answered. On Tuesday I've been invited to speak to our local Rotary club and they may help us to purchase an accessible van. Heather's positioning is excellent in her wheelchair but she had a hard time keeping her airway open if she's sleeping in the car seat. We'd get a van with tie downs so she could ride in her chair.

Heather had an appt with Infectious Disease on Thursday. She most likely has an immune deficiency, given her mito diagnosis, and they're doing blood tests to find out which type she has. There may be treatments to help her avoid infections. Her UTI's most likely are not caused by immune problems, but by bladder problems. So now she's off antibiotics and we're waiting to see if she gets another infection. It could just have been a run of bad luck, or maybe she has muscle problems with her bladder like she has with her intestines. I'm not crazy about the thought of her having even one more infection, especially with all she's lost lately.

Thank you for the emails, phone calls, and guest book notes. I really enjoy hearing from people who are keeping Heather in prayer, and I love chatting even if there isn't a lot to report.

Take care
Heidi

Tuesday, September 14, 2004 7:44 PM CDT

Heather is still having a hard time, but her medical team is falling into place. Actually, it is being aggressively forced into place by Heather's pediatrician. Tomorrow, The GI from Springfield, The metabolism MD from Boston, and the pediatrician will be having a telephone conference to discuss Heather. All her doctors are very worried about her and are looking into any possible causes for her mental status change. Heather went to a routine GI appointment on Monday and the doctor sent her straight to the ER because she was lethargic and he couldn't get her to wake up. At the ER she gradually started responding a bit and since the hospital was completely full, I opted to take her home, give her IV fluids, and call all her docs in the morning. Heather's problems seem to have a neurological cause at this point. Her brain stem is having a hard time regulating all the "maintenance" functions of her body. She also seems to be having frequent small seizures despite the medication.

The tentative plan is this: Heather's TPN volume will be increased and she will get other IV fluids as well, giving her 2400ml a day. She will get more sugar in her TPN. Friday she will have a brain MRI and more labs. On Tuesday she will be admitted to NEMC in Boston for a neurological workup. One thing that the Boston Neuro wants to check is the amino acid levels in her spinal fluid. Heather has had toxic levels of some of the amino acids in her blood and they want to make sure her body is excreting the amino acids well. One place the levels could build up is in her brain, which could cause problems.

Another question is whether or not we should try to tube feed her right now. Digesting food takes a lot of energy and maybe that energy would be better spent elsewhere. In addition, Heather's digestive system isn't working well right now and she's probably not absorbing much of what we're giving her anyway.

Thank you for your prayers. Our prayers have been answered, in the form of a pediatrician who seems to know the right things to say in order to bring all Heather's doctors together.

Take care
Heidi

Friday, September 10, 2004 5:36 PM CDT

Heather hasn't bounced back from her last run of illnesses like she has in the past. She still hasn't regained her play skills, language, and social interaction that she usually has. We are getting worried about this, and so are her doctors. Her Coenzyme Q10 has been increased threefold, and we are giving her extra fluids, and checking more bloodwork. She will be scheduled for a brain MRI to look for any changes. She keeps rubbing and wringing her hands so the doctors are suspecting neuropathy. There's medicine that she'll be able to try, but we have to wait until she's a little more stable. I hope that's soon, because she's having a hard time using her hands to do anything. She may have neuropathy in her feet, which would explain why she's refusing to walk.

I've been on the phone most of the day with the neurologists, metabolic doc, and pediatrician, and the plan is to admit her to NEMC during her next illness and try to fine tune her treatment, plus do additional testing to narrow down exactly what kind of mitochondrial disease she has. Despite the bad news we've had about Heather's development, it has been a really good week for pulling together Heather's medical team and starting to look at her as a whole child. Heather's new pediatrician did an excellent job of jumping right in and making phone calls, and she was able to give me clear instructions for what to do over the weekend, and when it would be necessary to admit her. I think we found a good one, a doctor who understands that Paul and I are very competent and know our child well, but need very clear guidelines and lots of communication and support.

Please continue to pray for Natalie, who is still battling in ICU. Prayers for Sam's heart and Kody's pain, and Kyle's adjustment to losing his foot. So many TPN friends are in need of prayers right now.

Take care,
Heidi

Monday, September 6, 2004 11:58 AM EDT

Heather is feeling a bit better, but she's still quite crabby. I'll take crabby over lethargic, though. I've been trying to get a good picture for her photo album but I haven't been able to get her to smile for a picture yet. I can't tell if it's because of her UTI or a 2 year old stubborn streak!

Heather's manometry testing will have to be postponed. The bacteria that caused her UTI is something that happens when the immune system isn't up to par. So, she will see the infectious disease doctor next week. Immune problems are common in mito so this isn't entirely unexpected. We just need to know what type of problems she has so that it can be treated. Heather's breathing and intestinal problems get much worse when she has any infection, so preventing infections may ultimately help everything get a little more stable.

Nick and Katie had a great time during their first few days at school. Katie was especially impressed with the school lunch- she reported "I ate my cookie first and the teacher didn't even say no!"

The weather has been especially mild this weekend and we have been able to bring Heather outside for walks and on the swing. I'd like to eventually bring her out to walk a short distance with her walker but her balance is still off. We'd have to wrap her in bubble wrap.

I'm looking forward to a quiet week, with Heather doing better, good nursing coverage, and the 2 older kids at school. I don't dare set up a regular work schedule, but I may do some last-minute filling in. It's always a treat to be able to leave the house, spend time with grown-ups, and NOT talk about Heather's health. I enjoy having casual conversations with other mothers who invariably ask about my children, ask their ages, and then remark "You must be busy." Yes, you could say that...

Please continue to pray for Natalie, who is still fighting in the ICU following her surgery.

Take care
Heidi

Thursday, September 2, 2004 7:31 PM CDT

It's turned out to be another one of "those" weeks. Tuesday, Heather never really woke up. She was lethargic all day and needed lots of extra IV fluid to keep her blood pressure up. I brought her to the Pediatrician's to have her urine checked for a UTI. What happened next was a huge case of "pass the buck" which ended with a trip to the ER for a test that could have easily been done in the office. We had a little scare over her liver numbers, which resolved itself. Everything seems to have ended well, but it leaves me wondering if the pediatrician practice that Heather goes to is just too big to serve her well. There are 20 practitioners and it's just impossible for her pedi to keep everyone up to speed. For now, Heather is on IV antibiotics and extra fluid, and Zofran as she needs it. Her belly is unhappy with this latest infection, of course. Things should ease up in a day or two. She'll be seen by the infectious disease specialist in a few weeks, so maybe we can work out a way to keep her from getting sick so often.

Murphy's law says that Heather couldn't possibly get sick during a week with no appointments planned. Of course, this week she had her 6 month update with Early Intervention. Heather has gained strength and endurance in the past 6 months, probably because her nutrition has improved. However, any progress she has made has been qualitative rather than quantitative. Her right sided weakness is more pronounced. Some skills may have been lost. But, look at all she's been through in the past few months! Several pneumonias, major surgery, seizures, new glasses, hepatitis, low oxygen levels, gee whiz! Despite all this, she's maintained her cheery disposition and beautiful smile. She's happy just being Heather, no matter what she can and cannot do.

We did get some good news today. Heather saw the eye doctor, and her eyes are healthy. Mitochondrial disease can cause some pretty severe eye problems, and Heather shows no signs of any of them. That means that all we have to work on is figuring out how she sees and how she uses her vision. Eye health is separate from vision. Her glasses are correcting her farsightedness and now we have to figure out what her brain is doing with all the information she gets from her eyes. She will be seeing a vision specialist in the next few weeks who can help us teach Heather how to use her eyes better.

Nick and Katie had their first day of school today. They were both so excited! Paul drove them in since Katie only had a half day. Tomorrow they'll be riding the big yellow school bus- OOOOOOOOOOOOOOOOH! And Katie is thrilled that she'll be eating lunch on a tray. The bus stop is three blocks away. It may be interesting trying to coordinate meeting the kids at the bus stop and taking care of Heather at home.

Please continue to pray for little Natalie, who continues to struggle with overwhelming illness.

Take care
Heidi

Tuesday, August 31, 2004 5:38 AM CDT

Sorry for not posting in a while.
Heather has been behaving, mostly. She slept through the night for the past 2 nights. We had been watching her O2 sats and only putting on the oxygen when she couldn't stay above 92 and by then she was awake and shaky... better to leave well enough alone. We're back to O2 all night and we don't even bother looking at her numbers.

The other day we hit a milestone. Heather asked to have her glasses put on! She's been leaving them on to see and only takes them off to get our attention now, LOL. It's her personal calling system.

Heather's walker was denied by Masshealth. They want to pay for the least expensive equipment possible, even if it's not really what she needs. Heather needs a heavy duty sturdy walker and they want her to get a flimsy one. But, we may still be able to get what she needs. The equipment co. is going to resubmit our other insurance and it might work. The insurance mess never ceases to amaze me.

The other day Heather's J tube balloon popped during her nap and she woke up covered in formula. The j tube hole had mostly closed up and we had to make a trip to Baystate, where the surgeon was able to widen the hole and get it back in. Not pleasant, but essential. If he wasn't able to get it in that way, she would have needed to have surgery.

We continue to wrestle with Heather's feeds. She seems to be able to tell the difference between 12ml an hour and 13ml an hour. It seems to be a pattern... She's doing well at 12, I increase the rate, after a few hours she is retching and starts backing up, then she has trouble breathing and is lethargic, I turn off the pump and she gets better, restart her at 12 and she does OK, and so on...
Heather will have manometry testing soon (a test that measures how well her intestines are moving). Hopefully that test will give us some possible medications to increase Heather's motility.

Natalie is very sick in critical condition and needs your prayers. She is a sweet, spunky little girl who has had serious medical problems her whole life. Please pay for strength and comfort for Natalie's Mom and guidance for her doctors. The whole TPN community is worried sick over this sweet little girl.

Take care
Heidi

Thursday, August 26, 2004 2:50 PM CDT

Heather is feeling much better! Her lungs are clear most of the time and she's only using the oxygen at night again. The doctor thinks that it's possible that she aspirated but that she more likely had some kind of virus that caused her lungs to have a hard time. Aspiration usually causes pneumonia in Heather and since she didn't need antibiotics and got better with steroids, it was probably a virus that caused her lungs to become inflamed. I'm very happy that she didn't aspirate but a bit worried that she responded so fierecely to a little virus. She had no other symptoms and the other children seemed well. Nick and Katie are going back to school next week, and who knows what they'll take home with them.

We have a 4 year old visitor this week, so our already busy household has really been humming! Heather loves watching Cody dance and sing, he makes her laugh. Nick is attending a sports camp for children with Autism this week, and is having a good time. Katie has her last week of preschool and I will bring in a cake tomorrow.

Heather had her dedication at church on Sunday. It was our third try to get her there, as she has been in the hospital so often. She slept through the whole thing. I'm so happy that she made it this time. I'm thankful that church members could see the little girl they've been praying for. Heather's lungs cleared Sunday afternoon, which I think was much more than coincidence. Prayer has been a strong part of Heather's healing during so many crises.

Thank you for your notes in the guest book. Paul and I love reading the messages from people who have been checking in on Heather.

Prayers for Heather's TPN buddy Natalie, who is sick and in pain from complications. Prayers for Kody and Killian, two miracle children, who continue their recoveries at home.

Take care!
Heidi

Thursday, August 19, 2004 12:01 PM EDT

Heather is hanging in there. We've been able to keep her lungs somewhat clear at home so far. She's much happier at home than in the hospital, plus she's exposed to fewer germs. We're still doing chest percussion every four hours around the clock, giving her oxygen as she needs it, and breathing treatments (9 a day). Her gut isn't working very well, which is typical for Heather with any illness. We're just giving her extra IV fluids to compensate, plus medication for nausea. She feels well enough to tell us which video she wants to watch! It's an elmo video, of course, and it talks about fish. She also wants her bunny blanket and her binky and will complain if they're not right in front of her, even if she's the one who threw them in the first place.

It was a long night for everyone so we all slept in this morning. Katie stayed home from preschool and the two big kids have been playing in the basement all morning. Imagine, Nick and Katie will both be in school full time in two weeks; Nick in first grade and Katie in Kindergarten. Time flies.

Heidi

Tuesday, August 17, 2004 7:48 PM CDT

Heather had 2 wonderful weeks of good health, but today was a bit of hard work. Heather went to bed feeling well last night, but woke up in the morning with wheezing and having a hard time breathing. My guess is that she aspirated at some point in the night. We went to see the pediatrician and it doesn't seem like she has an infection or pneumonia at this point. We're increasing her breathing medicine and using the oxygen during the day as she needs it. Hopefully, we cought it early enough that she'll recover quickly. Her dedication at church is this Sunday, and it's already been postponed once before due to illness. Heather is still alert and playful, so it seems like just a minor bump in the road.

So, tonight will be dedicated to breathing treatments, chest physiotherapy, and oxygen level checks. Paul and I take turns doing her treatments during the night, and a nurse will be in at 7 tomorrow morning. It'll be a double coffee morning tomorrow!

Heidi

Friday, August 13, 2004 5:43 AM CDT

We're back from our trip to the big city. We stayed in Boston for 2 nights and Heather had 3 appointments. It was our first time seeing the neurologist at NEMC and unfortunately Heather's records didn't arrive, even though I requested for Springfield to send them over 3 months ago. Luckily I brought copies of some of Heather's records, plus the summary that we wrote up. The doctor did an EEG and tweaked Heather's meds a little. We met Dr. Korson and had a final appointment with Dr. Ampola and said goodbye. She's moving to Atlanta at the end of the month. Heather looked amazing and I was happy that the doctors got to see her at her best. We ate supper at this really neat Chinese food place and Heather had a great time people watching. Karl and Matt know all the great restaurants in the area.

Tuesday was somewhat of a lazy day. We walked over to the hospital to drop off some labs and Heather got overheated. We wanted to walk around Boston Commons but we stayed in air conditioning and took a nap instead. We plan on getting Heather a cooling vest for next summer so that we can spend a little more time outside. (Her body doesn't regulate temperature or other body functions very well so we have to be careful that she doesn't overheat and have seizures.) We met up with Karl again for supper. Heather sucked on ice cubes and monitored the conversation.

Wednesday we met the GI doc. It was an interesting appointment. The Boston Doc's practice is made up of many complicated kids and he had a different perspective from the Springfield doc's. The Boston doc was pleased with Heather's feeds and said that he sees many kids who will never get to where Heather is now (12ml an hour). He thinks that Heather's GI problem is something called pseudo obstruction. That means that some of her GI system doesn't move the way it should and then everything gets backed up. He wants to do a manometry test to see if the problem is with her nerves or her muscles. He suspects that the problem is with the nerves and that's the kind that has a better prognosis. Of course, the treatment is pretty much what we're doing already. But, it's working and Heather has never felt better.

Some parts of the visit were hard to hear. The GI doc said that TPN will likely always be a part of Heather's life and that the goal is to use as little as possible when she's well. That was tough to hear because in the back of my mind I was hoping that he'd have a medicine or a treatment that would make everything better and Heather could get off TPN for good, and feel good at the same time. He also said that Heather's hiatal hernia needed to be repaired and that she would continue to reflux and potentially aspirate and get more pneumonias, even with her g tube to drainage, until that was done. Also, oral feeds are still out of the question until her coordination is better, maybe when she's 4 or so. Lastly, he said that Heather is at high risk for infections that she catches from herself (gut bugs can move out of her GI tract to different places, like her blood) and she needs to be admitted and treated aggressively with any illness, as even a cold can put her at risk. That's the part that was the hardest. I don't want Heather in the hospital if she's alert enough to know she's there, and I'm hoping that we can negotiate and minimize hospital stays. Heather has excellent nurses and can get many treatments at home, so I think she'd get better care at home if she only needs the basics.

Heather had labs drawn while we were at the GI office and they looked better than they ever have in her life. Her liver is very happy, her blood is staying where it's supposed to be, her body likes the amount of protein we're feeding her, nothing is inflamed, and we're giving her enough fluid. WOOHOO! She's a new kid.

Next step is to have a care conference in Springfield to come up with a plan for keeping Heather as healthy as she is now. Her hernia also needs to be addressed.

Nick and Katie had a great time with Nana and Grampy on the Cape while Paul, Heather and I were in Boston. They went school shopping, played mini golf and bumper boats, and went to McDonalds twice.

Heather was very happy to get home to her Elmo videos and all her toys. She travels well but is happy to be home.

Thank you for all your prayers. God's grace has brought Heather to where she is today and we are truly grateful.

Take care
Heidi

Saturday, August 7, 2004 6:27 PM CDT

Today was Heather's fourth good day in a row! She has not had a headache in a week, the same length of time that she has been on the oxygen. She is up to 12ml an hour through her j tube and is holding her own. Her activity level is better than it has been in a long time. She's even trying to TALK! She's fed up with the walker because she needs an adult to put her into it. Hopefully her own walker will come soon. She should be able to be more independent with a different style walker. She's been feeling so good that she's actually had a couple temper tantrums, lots of "stop" and "mine", and kicking and screaming. Yesterday she walked over to the tub and signed "bath" and tried to take off her clothes. She had just had a dressing change and a bath that day, so she couldn't have another one. Boy was she mad!

Heather was in the swing in the backyard and I was watching from the door. She saw me, waved, and said "hi". I started crying. She has never been able to do anything in the swing except concentrate on keeping her balance, never mind her vision problems. But she could do it yesterday. She signs "love mama". We are blessed.

Tomorrow we leave for Cape Cod and then to Boston for several doctor's appointments. It will be an adventure traveling with all Heather's equipment, including the oxygen tanks. We used to only carry the small emergency tank and now we need 4 days worth. We need a bigger vehicle!

Our prayers go out to our TPN and mito friends who are struggling right now. Special prayers for strength for Killian and his family, who is starting a long recovery following a severe fall.

Take care,
Heidi

Wednesday, August 4, 2004 5:47 PM CDT

Heather has beaten the UTI! Her last culture came back clean, yay! She's had 2 good days in a row and it feels good! Heather played in the sprinkler for the first time today. She had a wonderful time, signing "wet" and "bath".

I think we're on to something with the nighttime oxygen. Heather has slept through the night (except for diaper changes) since she started wearing the nasal cannula. Her energy is improved and she doesn't seem "hung over" in the morning like she used to. Praise the Lord for ways to keep her comfortable!

Heather needs to stay awake tonight for her chest CT tomorrow. Sounds like it'll be an "elmo-thon" at the Coleman house tonight. The CT scan is to evaluate her lung damage and determine if the hiatal hernia is affecting her breathing. She also has another hearing test tomorrow afternoon.

Heidi

Saturday, July 31, 2004 11:37 AM CDT

Heather is feeling pretty good, but this is a stubborn UTI! She had another culture done, which came back growing strep. She's still on antibiotics and will be for some time. We're giving her daily IV fluid boluses which seems to help her feel better. And, last night we put her oxygen on and she seemed to sleep really well, no headache this morning! We'll try it for a week to see if it makes a difference.

We managed to get out to have dinner on Thursday night. Nick and Katie had a really good time. Heather stayed with her nurse and behaved nicely.

We finally broke down and moved Heather's crib into our room. She's been sleeping in a pedicraft reflux wedge in a playpen her whole life, and she's finally outgrown the wedge. Heather has to sleep on a 30 degree angle because of her breathing. We ordered a custom made Tucker sling that fits on the crib mattress and we intended to put her crib in her sister's room. The problem is, we could never decide on the "best" time to do this. So, now we have her crib in our room. And Katie has a nice antique desk in her room. Heather was a little disoriented by the move but she's getting used to it. And now we can get to our closet, as the playpen used to be in front of it.

We have a play date this afternoon, if everyone behaves. It'll be nice to get her out of the house!

Take care
Heidi

Tuesday, July 27, 2004 11:10 AM CDT

Heather had a pretty good weekend, but is starting to act punky again. The antibiotics were changed from IV to through her jtube and I'm thinking that she just isn't absorbing it as well. Hopefully we can go back to the original antibiotic that seemed to be working much better.

Heather has been too unsteady to walk so she hasn't been able to use her walker for a little while. She will point to it and sign "walk" but falls over if she tries. However, we got her 2 new Elmo videos and she's thrilled. One is about birds and she's been pointing out every bird on the video. She also says "hi" every time anyone on the video is waving. Too cute!

Yesterday was cooler and less humid than it has been, and Heather sat on the swing for 15 minutes. She likes being outside. Her favorite activity is picking grass and throwing it over her shoulder. Daddy's poor lawn! Daddy got new sand for the sandbox but she Heather hasn't been out to play in it yet. We'll have to try it out soon, definitely just before a bath!

Please pray for Heather's TPN friends Olivia, Allison, Sam, and Sam's sister Abby. Thank you for all your prayers for Heather, as the Lord's been very good to us.

Heidi

Friday, July 23, 2004 3:55 PM CDT

Yesterday was not a good day. Heather spiked a temp and had a seizure. We ended up in the ER and found out that she has a urinary tract infection. This is her first. She's on IV antibiotics and we're giving her tylenol around the clock to prevent another temperature spike, and hopefully more seizures. Well, this ended her two month seizure-free run. The good news is that we're riding this one out at home. We have all that we need to care for her right here, plus she's more comfortable. She's really low energy and is sleeping a lot, but she still wants to watch elmo and play with her singing bunny toy.

Heather will be having tests to check for kidney reflux. We need to find out if there's a way to prevent more UTI's. She'll be staying on antibiotics until the tests are done in mid-August. Sadly, this infection send us back to square one with her J tube feeds. Her intestines are working in reverse again.

Heather wants to use the computer now. We got her a toddler keyboard and games and she's a whiz!

Heidi

Wednesday, July 21, 2004 8:18 PM CDT

Heather has had a busy day. Yesterday, she had a pulmonology appointment and her j tube got pulled out as she was being put into the car seat. The hole closed up faster than I have ever seen it do, and I wasn't able to get her mickey button back in. So, we had to make a side trip to the surgeon's office, and he wasn't able to put it back either. So, she had a regular catheter put in and then it was over to Xray to check placement. This morning we waited by the phone to know what time she had to go to interventional radiology to have the button replaced. Finally we got an appointment for 2:15. Two hours later, they were finally ready for her. A little ketamine did the trick and the button was back in. But, during the day her central line was getting harder to flush and we haven't seen a blood return for days. So, she was admitted to the floor for TPA, which is sort of like drano for central lines. Success! We'll just have to keep an eye on her line to make sure it stays open. Heather was exhausted with all the activity and she's been having a hard time keeping her vital signs normal. Her temp went down to 94.3 after the sedative and it was 101.2 when we got home. She'll have to take it easy for the next couple days. I think I'll be picking up a new Elmo DVD, since I'm really getting tired of the ones she has. Of course, she's perfectly happy watching the same one over and over again. That's a toddler for you! When we were at the hospital this afternoon she signed "home movie elmo", just to make it perfectly clear what she'd rather be doing!

Take care
Heidi

Monday, June 28, 2004 9:42 AM CDT

Whew! I finally got around to finishing this page. Thanks for bearing with me.

Heather saw the speech therapist today (we've been waiting for her visit for 3 months, as her hospital stays kept pushing things back), and the SLP says that her receptive and expressive language is right on track, when she uses signs. Heather has so much to say! Last night, she signed her first 3 word sentence- "movie all done sleep" when she wanted to go to bed. I'm so proud of her. Speech is a different story. It really depends on her strength and breath control, and right now signing is much easier than talking. Speech is a very long term goal. But, the fact that Heather can tell us what she wants, describe what she's doing, and even joke with us is a blessing.

Heather's belly is holding steady. She only backed up formula once today and she hasn't needed any zofran yet. I eeked up the pump a bit and hopefully we can get back to our target feeds by the time she sees GI again. Her liver seems to be handling the TPN, but she was spilling protein in her urine, so we'll have to keep an eye on it.

Last week, when we were at Baystate, we got a loaner walker until Heather's comes in. Heather is already a pro! She walks around the house, changes directions, and has discovered that she can reach the computer table when she's standing! She can also reach the piano keyboard to do a little jamming. So, she's busy exploring the house and Paul and I are doing damage control. Go Heather!

Please pray for Sam, Kyle, Hannah, Gracie, Natalie, and Samantha, and for strength for their parents and guidance for their doctors.

Take care, Heidi

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