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Friday, December 9, 2011 2:10 PM CST
Oh my goodness, the time just gets away from me so fast now.
The decorations are up and the presents are mostly bought and those that are, are wrapped. We are trying to be as prepared as possible for the next call for Trayvon. Reality is, we may get called at any time and one of us will be left here with 5 children alone on Christmas so we need to be as organized as possible!! We have separated out Trayvon's gifts so that they can be sent down via overnight mail should it become necessary.
As for Tray, he is doing well. He has been out of the hospital now for over a month and seems to be feeling very good. His weight has remained stable since pulling off the 13 pounds of fluid. His labs are great (we had to add some magnesium since his low sodium diet has made it harder to get this mineral apparently) and his heparin level likewise is excellent. We've got the routine of changing his Mirinone down to a science now and he has attended school almost daily with no issues at all.
Joshua saw the neurologist who is just as frustrated as we are. He is ready to start weaning meds, because Joshua now seizes as much as he did pre-surgery. He recommends reassessing him completely for yet another surgery. We have agreed to admit him for the long term video eeg monitoring and the weaning of meds. He is currently on SIX meds as well as IVIG, as well the Vagal Nerve Stimulator (VNS) and yet still seizes every 2 - 3 days now. In addition, we have had to use Ativan again now as a rescue med. The other day he had 8 seizures in a row. Thank God the 4mg of Ativan did the job and he stopped without needing an ambulance trip. Frustration is a monumental understatement.
Speaking of ambulances, Sergio earned himself yet another ride in one this past weekend. Since being discharged from the hospital and against all odds given by the docs, he has been doing very well. He remained on his triple antifungal therapy via IV until just this week. His cultures (of his blood and central line) remained positive for 22 consecutive days (a new record yet again for our hospital) for yeast growth. Then, without rhyme or reason, they stopped being positive. We beat the crud back. We saved his line. We made liars out of doctors and even out of ourselves. He has since had yet another CT scan of his chest as well as the change out of his G/J tube due to an accidental removal while getting out of his wheelchair at the zoo (oops). The surgeon has reviewed the scans and without enormous risk, the clot can not safely be removed. It will now stay as a permanent part of Sergio and we'll continue on the antifunal treatment of IV Amphotericine B 2 x weekly for the rest of his life. Again, another first for our medical team. As a result of this infection and all of the other craziness Sergio has been pulling, the ID team (actually the doctor that called me medically neglectful) dug deeper into his history and discovered that he has less than 50 percent of the normal amount of lymphocytes since 10/10. In addition, he has lost all protection from his pneumovax vaccine they gave him (three times in three months) in 2009. The ID team now feels that he has a severe immune deficiency and though there is no treatment at this time, we now know that aggressive tx with antibiotics and antifungals is a must. When I went to the appointment I showed them all of the locations of yeast infection he has on his body (head, groin, gtube, central line site and even his underarm). They were shocked to see that even on antifungal tx he was still unable to rid the skin level infections. However, I'm thrilled to report that we HAVE successfully rid him of the yeast in his groin, most of his head and his underarm. We are now working hard on his g-tube and central line area by changing dressings daily and applying my own concoction of lotions, creams and meds.
Oh yeah, the ambulance ride. . . lol... Friday night we all went to a Christmas Party and Sergio had a great time. We came home and when I went to withdraw his ethnol lock and then flush, the saline squirted out everywhere. He had a hole in his central line, not good. I paged everyone that I'm suppose to to let them know of the situation and no one called back. It was 10:00 at night and I was exhausted. Sergio has gone many times without TPN at night for many reasons, but mostly when he's admitted and we don't have a bag with us, so he just gets hydration. But, since it was a broken line, I couldn't do that either. So we just heparin locked him and figured I'd take him to the ER the next day to have surgery fix it. Well, the next day came. Nurse reported a great night, no issues. I put him in the swing when he woke up and he played and then fell back asleep. I tried to prop his head up a bit and he fought me tooth and nail so I said forget it and left him alone. He fell back asleep immediately. Hmmm. About a 1/2 hour later I went to get him dressed for a Christmas party thown by the hem/onc department. When I put him in the crib, I could not wake him. He was unable to sit independently and couldn't keep his eyes open. Peter tried to no avail as well. I checked his sugar and it was 35. I was afraid he's start seizing and without a central line, was unable to give any dextrose to him. So we called the ambulance (stupid since they were useless to us and couldn't even get him strapped in right). It was a frustrating ER trip and finally talked them into getting his labs off of the broken line as well as cultures before surgery could get it repaired (because you can't use it for 8 hours after the repair). They tried 11 times for an IV and he never got one until he got to the floor where our amazing pallative care doctor gave it one last shot. We were able to finally get some sugar into him and after 21 hours of virtually unresponsiveness, he was awake. We went home the next day (again, not with the blessing of the general pediatrician, but with the blessing of those that know he needs to be home as much as we can, as soon as we can). He has a repaired line, his cultures never grew and he is looking great.
Unfortunately, his nurse, quite the day after that admission. She was upset that I chose to update via facebook instead of individual texts to her. She was an awesome nurse for Sergio and we'll miss her skills and her way with him, but we won't miss the drama at all. The lack of personal updates was in no way meant to be a sign of disrespect, but clearly she was unable to see past her own needs and concerns to see that we were doing the best we could. Sigh. So Sergio has been unable to attend school and we continue to look for another good nurse to take care of him the way he needs to be. I thank God every day for our night nurse, she has stuck with us through thick and thin and pray she always will. We also have a couple of new nurses that have worked out very well including an RN that has been wonderful in giving me a break from the TPN and IV meds several days a week!
The rest of the kids are doing very well. Marriela is very stable (in Marriela world, not normal world LOL). She is excited about Christmas and as always, anything she is excited about is a blessing and a curse. She builds it up in her mind to such an extent that it begins to overwhelm her and she can't handle it anymore. Then the fun begins. LOL But over all, she is doing great. Sunday I am taking her to see the Barney Birthday Bash Live show. She doesn't know yet, so don't tell her if you see her!!
Nettie is a busy little beaver. Getting lots of volunteer time in at the Syracuse ASPCA. She is going to PT and will see the orthopedic surgeon on Tuesday to be re-evaluated for scoliosis and possibly new lifts on her shoes. She has been going to classes to learn to knit and is working on a scarf and just learned to make her own earrings. Doing awesome overall.
Cody continues to do great. He and Marriela had a nasty cough last week but a round of steroids for both seems to have done the trick. He is so long and lean, I am amazed each time I see him sleeping in bed at just how tall he is getting. His bottom 2 teeth are just hanging by threads but he has no interest in pulling them out. He's waiting for them to "fall out". LOL He did have yet another weak spot in his tooth (so now we know that Joshua's teeth are not all due to chemo since his brother has the same issues as well - thanks gene pool). So he had that filled and did fantastic. Doing great in school too!!
Well, that's it for now. Take Care and God Bless,
Renee
Friday, November 25, 2011 3:47 PM CST
Hi everyone!!
I hope this finds you all well and stuffed from a wonderful Thanksgiving. I find myself in awe that we can just move on as a family and enjoy any time we have together as a family even with all the time we spend apart. This Thanksgiving was wonderful because we were home, and that was an unexpected surprise. I honestly didn’t think Sergio would have been allowed home. So we enjoyed the holiday with an awesome meal, good company and lots of relaxation.
On the topic of Sergio. . .
Our rollercoaster ride is about to start up again. Despite being on 3 antifungals for over 3 weeks, his blood cultures are still positive. He is still very infected with this awful yeast that refuses to relent. He is now also suffering from yeast infections in his diaper area, his g-tube, his head and even around his central line. This should be impossible. But, then again this is Sergio we are talking about here. The only thing we haven’t done yet to try and help the situation is to remove the central line. It was our hope that there would be a surgical option to this awful clot, but those options appear to be getting slimmer and slimmer by the day. The surgeon also stated that he was not comfortable performing major surgery on a child with an active, systemic fungal infection. Soooo, we are removing the line, stopping all food once again, putting in some regular IVs (which are very short lived in Sergio and the locations are in awful places like the toes and head now) and continue pumping him full of the anti-fungals in hopes that, without the line, we can clear his blood stream of the infection. Once that happens and after another set of special scans to look at his overall vascular situation as well as the clot, the surgeon will weigh in, again, on any options we may have. If we can’t clear his blood. . . sigh, we need lots and lots of prayers that this scenario does not play out. It would be a grim and terrifying proposition. So, we will be inpatient for at least 5 days and if there is surgery, maybe longer. Only God can really tell us what the plan is for my baby, but we seem to be playing phone tag and I haven’t been able to hear what he’s saying for some time now.
Trayvon went to NY for a check up and they were pleased overall with how he looks. His sats have improved nicely and though he can lose or gain as much as 6 pounds in water weight a day, he seems to be feeling very well. He has developed a cold with a very nasty cough right after returning from NYC so I have to e-mail them to let them know. Overall though, he seems to be doing very well.
Joshua saw the neurologist yesterday. His seizures have returned to his pre-surgery baseline. . . I’m truly disgusted. He is on more meds than ever before and has had 21 hours of surgery on his head to stop these stupid seizures and yet he continues to seize. The neurologist will be readmitting him to the hospital for continuous Video EEG monitoring again to look at yet another possible surgery. Clearly, though we took a lot of his damaged brain tissue, we left behind the source of these seizures. Now I pray once again, that they can find the focal point and it’s actually in an area where they can reach it without causing him any additional disabilities. The admission won’t happen until there is an opening on the monitoring unit and we’ve been told that the list is out as far as the beginning of the new year.
Marriela is doing very well. She seems to be handling my in and out of the hospital exceptionally well!! The school has noted that she has improved somewhat in her overall ability to stay in the classroom for slightly longer periods of times. She is very excited about Christmas and is anxiously awaiting for me to take down the Fall decorations and to put up the Christmas ones. I will do that this weekend. LOL
Annette is doing awesome. She is very busy and has now taking to sitting at the computer and making list after list of “Life Goals” and “Things to Save my Money For”. She has made it all the way to “having a baby” on the goal list and to “car seats and cribs” on the saving list. LOL She is giving me gray hairs!! She has had to slow down her walking trend due to severe hip and back pain. She is going back to physical therapy who has begun taping her knee caps down for 4 days at a time. Nettie will go to see the orthopedic surgeon in a couple of weeks where she will get xrays of her hips and spine to check the status of her previous surgery and her scoliosis. But, overall, she’s doing very well.
Cody, is awesome. He has bloody noses a couple of times a week, but I think he has happy fingers that poke in places I wish they wouldn’t. But try telling a 6 year old to stop anything and you might as well say “Do it as much as you want.” LOL So he has learned to hold the paper towel and pinch his own nose until the bleeding slows down to a trickle (usually about 15 minutes) and then he relaxes until is over all the way. He’s doing well in school and went to a birthday party last weekend at the bowling alley where he had a great time.
Well, that’s it for now.
Thank you for all of your prayers, we need them now, more than ever.
Renee
Sunday, November 13, 2011 8:02 PM CST
We came here November 4, 2011 very sick due to the negligence of a doctor who failed to use proper handling techniques of my baby's line. That resulted in a rapid systemic infection with a bacteria. However, that was quickly taken care of with IV antibiotics. In the mean time, just the night before we had stopped the IV antifungal we had been using for the past 4 and a half months because we were going to use our new ethanol locks to protect the line and to see if the yeast would return. While culturing the blood for the bacteria that made him so sick on Friday, we discovered that only one day after stopping the Fluconazole, the yeast had returned full force and we didn't have any ethanol locks in place due to the other infection. Tomorrow will be 10 long days my son has had this evil, awful yeast flowing through his body. The Google search of the ramifications of anything past 3 days is enough to make me want to run and hide with my baby anywhere but here. Today, he looks great, despite what the labs say. Yesterday he looked awful. Taking him home, is not an option. Peter and I are beginning to discuss the need to take him somewhere else. Clearly the only other place we could go is the same place Trayvon will get his transplant. NY Presbyterian in NYC. I would have to bring both boys. What would I do with Trayvon while he waits? What happens if they can't help Sergio either and I'm down there alone with both of them. What happens if Tray gets his call and Sergio is not in the hospital? Where would one or the other sleep every night (who ever is not in the hospital would probably not be allowed to stay over night)? It's overwhelming, but so is sitting here knowing what I know and not seeing a good end in sight here. We need to make some changes. I've begun pushing hard for some more imaging studies. We need to see the inside of his little body to see if anything else, other than this shitty clot sitting next to his heart, is causing him a problem. My prayer is a resounding YES, let there be another source of infection so we can remove the darn thing and get on the road to recovery. However, if this is all due to this clot, then we may be running out of proverbial options. We are awaiting the review of the local cardiothoracic surgeon who will determine if he can safely remove the entire vein the clot is adhered too. We've been prepared by the team that it is highly unlikely that he can, but only he can make the final determination. So, we pray hard for the clot to "miraculously" disappear along with all signs and traces of yeast. OR, that the surgeon will have a plan to remove it and take the nasty stuff out once and for all. OR, that we come to a clearer determination as to where and who else we need to see to address this issue. So there are still several things to pray for and we'll take any and all of them.
As for the rest:
Trayvon has continued to lose water weight. 13 pounds in the past 48 hours. His sats and blood pressures reflect the new, fluid reduced Tray. LOL We took him out to Dinner tonight finally for his birthday. He enjoyed a large dish of Fettuccine Alfredo. He'll take on a bit of water weight with that but he deserved it. I am actually praying that we don't get his call right now until the issues with Sergio are sorted out better.
Joshua has had a few seizures. We increased his one med and anticipated some side effects, but luckily, none!! So hopefully we'll enjoy the benefits of the higher dose and none of the side effects. I cut his hair tonight while I was home much to his dismay. He looked like a shaggy, scruffy rooster. He looks so much better now!! We also started a little sleep med at night to help counter balance the insomnia the increased med it causing. So far, so good.
Marriela is doing really well. She seems to always do better when I'm not home!! Stinker. She's been coming down all week to spend time with me for a few hours at a time. Tonight I brought her down after grocery shopping and gave her a shower and did her hair. Then we went together to meet the rest of the family out for dinner. She was anxious to go, but was fun hanging out with her.
Cody is doing great as always. He spent the afternoon with his cousin and enjoyed having the play date! Next week he has another birthday party. He is doing great in school and I'm thrilled to hear him counting and practicing him math and spelling all the time even when he's just sitting and playing. :-)
Annette is keeping busy. She came down and spent the day with me on Friday and bounced between Tray's and Sergio's room. She is awesome with Sergio and loves the feeling of responsibility that comes with sitting with him and keeping him company. She said tonight that when I'm in NYC, if Sergio needs to go to the ER, she will take him on her lap in the power wheelchair. YIKES!! I put the Kaboosh on any ideas of going to the ER at all with Sergio but, my goodness, how did she think that was a good idea at all?? LOL
Peter, as always is holding down the fort remarkably well. I get all of Trayvon's IV lines primed and ready a day ahead and he then hooks him up when it's time. In addition, today he learned to give Tray his shot of heparin, and according to Tray, he did a great job!! Go Daddy Go!!
Well, time to move Sergio to his crib and get some sleep myself. Thanks for checking in.
With love,
Renee
Tuesday, November 8, 2011 6:00 PM CST
Before I do anything, I need to say Happy Birthday to our sweet boy, Trayvon. He is now a TEENAGER!!! I can't believe the little scared 2 year old is now 13 and bravely faces his daily shots, lugs around his 02 and carries an IV pump with him 24/7 and never says a thing. He's an awesome, funny and very caring little man. We love you Trayvon!!!
It's been a crazy, crazy couple of months here. Since the end of September Trayvon has been admitted 4 times and Sergio has been in 3 times.
Now that doesn't sound like a lot, but, let me tell you. . . the dang kids keep overlapping each other so I'm running from one unit to another and it's exhausting.
As of today, I have two in again. Tray was just discharged on Sunday and before that he was discharged and readmitted on the same day last Friday.
Without going into all of the crazy details of the hows and whys, let tell you where we are right at this very moment. Sergio is getting better. He scared us all yesterday. He went septic on Friday due to a line infection with a gram negative bug called Klebesilla. He began getting better and had a great 36 hours and then he crashed again in the middle of the night. It was a long night and it had been my first night of sleep since Trayvon had been discharged the day before. First thing in the morning, he was moved to the PICU where he was very sick and needed BP support as well as several other interventions to stabilize. Later that day we found out why, he was septic with yeast again. 4 days earlier we had stopped our IV antifungal after 18 weeks of using it. The cultures were drawn just 2 days later and he was full of yeast already, and it almost killed him only 4 days later. Soooo, we are treating the first infection very successfully, as his cultures since starting the antibiotics are negative. We started Ambisome and are now drawing cultures daily. If we can get 3 – 4 negative cultures in a row, we should be able to save this line for now. The reason for the constant fungal infections is a large clot he has in the right subclavian vein. This clot, as he has now shown us, is clearly full of fungus, and despite 4.5 months of fluconazole treatment, it was not cleared. So we are at a difficult place. We can't lose this line, as we really only have one place left to go. Even if we do pull this line, putting in a new one, with the fungus filled clot only inches from it, means we'll be infected again in a matter of hours and the next time could be the last time. So we either leave him on systemic antifugals for the remainder of his life or we remove the offending clot. He is literally the antithesis of proper protocol for the ID docs. They pull the line immediately, they never treat beyond the “accepted” length of time due to resistance, they don't treat without positive cultures and identification. We are asking to do all of the above in order to keep Sergio alive. This is point blank, uncharted territory and needs to be done without regard to “proper protocol” as Sergio has never been one to follow anyone else's lead but his own. The option of removing the clot is probably not a real option at all, but will be explored to its fullest extent. The clot is in a vein that empties into the right atrium, which is where central lines end. When blood is pulled into the line, it literally passes over the clot, into the atrium and down the line, thus his blood cultures from the line, without treatment or removal of the clot will always be positive. To remove the clot the entire right subclavian vein will need to be removed and this is, a very complicated and large surgery, one that Sergio may or may not be able to handle. So again, we are left with crappy choice one, or crappier choice two and we don't know which one is even one or two. With all of that said though, Sergio has been very well despite all that is going on in that little body of his. We have discussed and will begin feeding his intestines again with pedialyte at a very slow and very low rate. With any luck and a lot of prayers, we can get his gut to start working and the need for lines will be a moot point someday in the future.
Ok, as for Trayvon. He has been inpatient 4 times in 4 weeks. He had the arrythmia, then went in to start the milrinone, then returned 2 weeks later for severe fluid retention, discharged and readmitted the same day for heart palpatations, discharged and readmitted today for fever and chills (probable line infection). He is frustrated, as are Peter and I with this whole Milrinone thing. He was doing fine, albeit slow, needing oxygen and not able to participate in physical activity, but he was not in the hospital, his heart wasn't having rhythm issues and he was happy. Now, he's being admitted over and over and over and hes not happy, and neither am I. So we re-discussing whether this is the right choice for him right now. This has been a very hard and frustrating experience for us.
The other kids are doing well. Joshua has been having seizures intermittently, but overall, doing well.
So, that's were we are right now.
Yesterday I was in a very bad state of mind. I just couldn't seem to get it together and spent most of the day in a cry fest with anyone that wanted to come and cry with me. I am tired of my kids being sick and tired. I'm broken hearted at the options that continue to elude us with Sergio and he is always getting the short end of the proverbial stick. I'm disgusted at the turns Trayvon has made in the past month since making this big transtition to IV med support for a heart that needs replacing, but does it need to be replaced so immenitely we're willing to ruin his quality of life now. Just so many hard questions and no really good answers.
But, today I woke up after a decent nights sleep finally. Took a shower (oh how that helps every time), put on some makeup and faced the unknowns with a pep in my step. So for now, I've got my running shoes on as I move from room to room and pray that both will be out soon again for a long time.
With love,
Renee
Sunday, September 18, 2011 8:25 AM CDT
Well, it was just over 1 month ago that I had updated this website. I can't even remember what we had going on a month ago. LOL
I come to you yet again from Golisano Children's Hospital, room 11E4. I went back to see what I was doing on or around this date last year. . . and sadly it was the same thing.
In September of 2010:
1. we listed Trayvon for a heart transplant,
2. had an amazing benefit,
3. admitted 3 times with Sergio,
4. admitted 1 time with Annette
5. had 2 trips to the ER with Joshua for seizures.
6. Cody was on steroids for asthma
7. Marriela was at one of her most unstable times in her little life.
It was a very hard month last year, yet I really don't remember it. I've been in survival mode for a year now and God is good in not allowing my mind to dwell on all of those past issues.
Sergio is doing well, but is inpatient. His high heart rates and several episodes of fevers concern us, since he has only been off of his IV antibiotic for his last line infection for 3 days now. We were doing Vancomycin "locks" in his line, where you instill the vanco solution in his line and let it sit there for 4 hours to offer additional sterilization of any bacteria. I'm thinking it isn't working. Just a hunch. :-) I don't know what the plan is. I'm guessing the line needs to be removed. This is a very difficult concept though, as we only have 2 remaining sites left for central lines. The reality is, we are running out of places to put the lines that keep my baby alive, and yet it is the lines themselves that are causing all of his issues. Irony of the worst kind.
The rest of the kids are doing well.
Cody had his 6 year old birthday party yesterday. It was a camo party and it was a lot of fun. The kids wore camo paint on their faces, had camo bandanas and lots of little trinkets to be the best soldiers they could be. Only 2 little boys as well as several of their siblings joined us, but it was perfect. Everyone, including Marriela, had a great time!!
In addition to the party, we have found a new home for Sarah, our rabbit. Poor Trayvon cried so hard when he heard me talking to the mom of one of the little party goes about how great a pet she is, now I'm committed to a Beta fish for his birthday. . . can't win can I. LOL So sometime next week, our bunny will be on her way to a new home where they are looking forward to letting her run free in the kitchen and have several cages they are putting together like a hamster run so she has more room to play. That's all I've ever wanted for her. To be loved and not ignored.
School is going well for everyone thus far. Marriela is a work in progress, but this year, everyone WANTS to be with her and loves her. They see her for the awesome little girl she is and not for the behaviors, never ending need to move and the lack of social filter she has. I have real hope this year will be a good one for her.
Nettie and I will meet with ARC on Monday to discuss their supervised work program. Looking forward to getting Nettie out and into the working world!! So is she. What a great step for her.
Joshua has been doing very well. He turns 16 on Wednesday!!! That's just craziness to me. But, what a ride the last 16 years have been. We have seen what we think may be a total of 8 seizures since his surgery almost 12 weeks ago. This is averaging less than 1 a week (and really its more like 2 quick ones and then weeks without). What a huge improvement!! He goes for an MRI and another EEG next month to monitor any changes.
Trayvon had a cold and his sats dropped down into the low 70s. He's doing much better now, but sats are only in the high 70s-low 80s anymore. He is loving middle school and has talked several times about this one very pretty girl he can't seem to talk too. LOL
Well, that's it for now.
I'll try to do better at my updates. LOL
Hugs,
Renee
Wednesday, August 17, 2011 8:02 PM CDT
Hey there everyone!
I don't even know where I left off last time. So I'll just give the most recent updates.
Joshua, doing well. However, he did have a drop seizure on Saturday afternoon. I was deeply saddened. We increased the med we had reduced, but unfortunately we have been dealing with the crappy side effects since the increase. He had IVIG today and afterwards we saw the neurologist. I expressed my frustration with the side effects war and he agreed they were not tolerable. So we have added another new med to the list, that supposedly has a good effect on his type of drop seizures. He also said that if he seizes again, we'll have to increase his IVIG to every week! Oh my, I don't know how I would fit in a weekly, all day infusion! So we're going to pray now that the new med works. In exchange, we were allowed to reduce the problematic med back to the dose that seems to be fine. Phew. He is doing great in therapy and we've made some very nice improvement in his gait and his "shuffle". I'm very pleased overall with his progress, and the reality is that 2 seizures in 7 weeks is actually AWESOME for Joshua, so I really need to keep it all in perspective. :-)
Sergio, doing ok. He had his repeat CT scan yesterday. After a day of utter chaos and literally no one knowing what they are doing in the entire hospital, we did get scanned. The clot is the same. Since we are only 4 weeks out from his last sepsis episode, we are going to try and let him recover a bit longer and do another 2 - 3 weeks of IV fluconazole. Then rescan. If it's a fungal mass that's in his vein, then the additional meds should help break it up, but if it's mixed with blood and platelets, then he will need anti-thrombolitic therapy and they are worried about his ability to tolerate this treatment so close to a sepsis. So we sit tight for another couple of weeks and then rescan him again. This week we ran some blood cultures because his heart rate is running higher again and he was very irritable for several days. The good news is that his cultures are all NEGATIVE still!! WOOHOO. He also had a bad irritation on his bottom and g-tube. I had to use some morphine to get him comfortable for a couple of days, but with some hydrocortisone, we made some very nice headway on both areas and he's much happier now.
Marriela is doing well despite being home all day now. She is much more relaxed than she has been in the past and now she is trying to go to bed by herself in her own bed while watching a movie. This is a big step, as normally, I have to take her upstairs and rub her back and arms and lay with her till she's out. Trying to fit that in with getting Sergio's TPN and IV meds ready is quite the challenge! LOL But, it's nice for her to be quiet in her bed while I'm preparing things for Serge. Overall though, she is doing very well.
Tray is doing well also. We are looking at the second week of September for his admission and the starting of his milrinone. For those that I may have missed my explanation of what he is going to get here is a quick one. . .
Tray will go to surgery for the placement of a PICC line a (peripheral intravenous central catheter). It's a large bore IV line that is placed deep in a large vein and meant for long term use and for meds that are caustic to smaller veins. Once he gets the new line, he will go to the ICU where they will start a medication that will be infused 24 hours a day until he gets his transplant. This med will reduce the work load of his heart and should help him feel a lot better! However, the starting of this med can cause some serious side effects thus the reason they start it in the ICU under very careful observation. He should only have to stay in the hospital for a couple of days and then he will be discharged with the med in a back pack that he will wear everywhere while he gets this med non-stop. I will change the tubing daily and hook up a new syringe every 2 days. That will make 2 kids hooked to central lines 24 hours a day. . . oh joy. LOL This will allow him to elevate on the transplant list to the highest level and we should be looking at a transplant within a few months. He'll have been listed for one year on September 8th. So we have already accrued 1 year on the transplant list that will help him when he goes to level 1A.
Annette is also doing great. She is going to sign up for a 3K race in October. She wanted to do a 5K but we suggested (rather firmly) she should go for a shorter race to be sure she actually enjoyed it. She is very happy to be trying it and can actually do 3K with little difficulty. She's working on speed now rather than endurance. She is so freaking awesome!!!
Cody is wonderful. He is loving summer and is still totally into the whole camouflage look and wore the same camo long sleeve shirt, camo long pants, camo underwear, and camo baseball hat for 3 straight days!!! I had to finally hide the winter clothes LOL.
Yesterday we went to the annual Foster/Adoption Picnic for Cayuga County yesterday. I love having them all see Sergio and how far he's come. Though they don't realize his new challenges since he's not with them anymore. But, he looks fantastic from when they saw him as the severely overweight baby (due to steroids), on oxygen 24/7, unable to do anything at all. Now he is in the bouncy house, running across the field and playing on the slides. Very cool.
Well, that's it for now. Take Care and God Bless,
Renee
Saturday, August 13, 2011 7:13 PM CDT
I'm sad. First drop seizure since surgery. Was having a great day and helping me do some yard work, and then boom, fell straight back into a pile of pricker bushes I had just cut down. My heart sank and has yet to come back up. He was unphased by it, but my confidence is shaken. I had just texted Peter to say, you need to relax and enjoy his new seizure free life. . . stupid thing to do and say. I know I didn't cause the seizure, but everything in me hates that I wrote it or thought it, it just jinxed it all.
The rest are doing ok. Sergio is going to have another CT scan of his chest to look at his clot this coming week. We should have a plan of action once we see if the clot is still there or not.
Marriela is doing well for the most part since increasing her meds again and pulling her out of Casey's Place. Oh yeah, don't think I told you, we had to take her out of Casey's Place all together. She was just too aggressive and not enjoying herself at all. Once we took that stressor out of the picture, she started to come down a bit. We did a level on her lithium and it had dropped a bit. But, due to the aggression we increased her antipsychotic, Trilafon, and she has had a nice response. The most noticeable is the fact that she isn't going to the bathroom every 10 minutes any more!! She's also been able to go to new places and after using the potty once, is fine for the remaining time we're there. That's a huge improvement!! Summer school ended yesterday so we'll see how this coming week will be.
The rest are doing well. To tired now for full update on all 6, but nothing bad is going on and those are the most recent things going on.
Sad and tired,
Renee
Wednesday, July 27, 2011 8:38 PM CDT
Hi there, it’s been a week and thought it was time to update those who don’t follow us on facebook. Lol
Joshua, is home and happy. However, we had many issues with severe side effects from one of his drugs and with some experimenting on our own, we were able to find a dose that doesn’t cause him issues. The side effects were as bad as the seizures, sever double vision, blurry vision, severe ataxia (drunk walking) that was causing him to tip right over when he was sitting or standing and he slept for about 18 hours a day, only to suffer with the side effects when he was awake. We’ve notified the neurologist several times, and understand his reluctance to reduce meds this close to the surgery, but HELLO, this is not ok either. So, we put in one more call telling him what dose we want (though we’ve already done it, oops) and should get his blessing tomorrow. On the days we’ve used the lower dose in the AM he is awesome! Today he was able to walk to our local park (2.5 blocks away) and BACK. Yesterday we had him walk around our Church and we timed him. It’s a big Church (used to be an old high school) and he did it in 7.12 minutes. He did fall yesterday in the kitchen and continues to be quite weak, but we start therapy again on Monday and that should improve quickly. The best news of all, is he has now been seizure free for one whole month!!!
Sergio. Oh boy is that child giving me gray hairs. After a very nasty run in with the ID (infectious disease) people who are in charge of managing the meds for line infections. . . and an ICU doctor who has told us that we are backed into a corner with this infection, and a surgeon who feels there is only ONE place left to put a line, and no one our primary team is here (his pediatrician, GI doc and Pallative care doc ALL went on vacation at the same time!!), we were prepared for the worst. We agreed to pull his line and start some IV’s to give him time to clear the yeast from his blood. In less than 48 hours we were on IV number 5, but then, by some amazing grace of God and a fantastic SWAT team nurse, we had an IV that lasted 5 days straight!!! It was very hard to know we weren’t giving him any nutrition and even had to reduce his fluids to barely maintance level due to his veins blowing any time we went higher. But again, we were graced with yet another blessing when he did GREAT for the entire time he did not get food, in fact, we waited for 11 days for the antifungal to do it’s job before putting in his new single lumen line. While we were waiting, we did a bone scan and a special biphasic CT scan to check for clots and line access. We were very surprised to find both! He has 3 wonderful spots on his left side for access in the future (well, now 2 since we used one for this line), but we also found a thrombis in his right subclavian vein. This is probably the source of the repeat infections (despite what ID thought) and we are going to keep him on the antifungals for another 4 weeks (6 weeks total) and recheck the clot to see if it’s gone. If it’s not, then we will visit different options for breaking it up, but won’t come off of the antifungals until it is gone for good. He is home, he is great and we are now doing 24 hour TPN to try and bulk him back up from the weight he lost. Overall, a happy ending to a very scary story.
Trayvon, continues to do well. He is wearing his O2 to school and at night, but we now allow him to take it off during the rest of the day and his sats are holding well in the high 80’s and even hitting a low 90 every now and then. He is out of breath a lot and we hear him panting with even mild exertion, but he is not bothered by it, so we are sticking with our plan to sit tight for the remainder of the summer and then pursue the higher status once school starts and the kids are settled in.
Marriela is struggling. She has been attending Casey’s Place for a few weeks now, and has been having significant issues there. I had to pick her up last week and she was a mess, screaming, jumping up and down and no voice left from the lengthy tantrum. The look on the faces of the workers was exhaustion. I had to smile since they only have had to deal with this for a few hours in their lives, we live this daily! LOL I did give her a Zyprexa (rescue med, in the same family as haldol) to bring her down a few notches, before going back to the hospital. I then sent some in this week due to some aggressive behaviors she was having towards some of the other kids and they had to use it the first day we sent it. Very sad and frustrating, as this is suppose to be a fun, safe place and she is not allowing them to help her have fun. We’ve noticed at home as well, she is VERY hyper again and in a constant state of a heightened mood. In other words, she is very demanding, has no frustration tolerance, can’t handle change, tantrums easily and needs constant supervision. I’m taking her for a lithium level check tomorrow and then we see the psychiatrist on Friday to discuss our options. Hoping there are some. I did change her pick up time to 4:30 instead of the 5:15 so I think that will help a lot. Crossing our fingers!
Cody is doing awesome. He is VERY into Call of Duty (he only actually plays the video game a few minutes each day) but reenacts entire wars in his head! He takes out all of his weapons, army men, stuffed animals and dresses in anything at all he thinks looks “soldier” like. He is very self entertaining and can play for hours, but loves when Trayvon joins him in the activities. He never did make it to the Gator Camp since they cancelled bussing and the pick up time was the same time Tray and Marriela got dropped off from summer school. With me in the hospital there was no way to do both. My heart was heavy over this as well, it was one more thing one of my kids missed.
Annette is doing fantastic. She loves her two new workers and they GET what the job really is. Yesterday she and her worker went to the Farmer’s Market and picked out the makings for a salad, came back to the house, cooked the eggs, cleaned the lettuce and made a salad for all to sit down and enjoy. She even set the table!! She has also started a new Yoga in the Park class with her evening worker who is very good as well. Her graduation party was wonderful. . . beyond wonderful. Not a thing was left undone and the clean up was all taken care of as well. We couldn’t have asked for a more amazing set up. AND it was sooooo hot that day we were so happy it was inside with air conditioning!! Nettie is now writing her own thank you cards and will be working on those as well with her workers.
Well, that’s it for now. Stay cool and enjoy these amazing summer days we’ve been having~!
Friday, July 15, 2011 9:42 PM CDT
Hi everyone!
I know, I know, it's been a long time since my last update. I try to do quick ones on facebook and that's the lazy way out. So here is a better update with a bit more detail as to what has been going on.
Joshua: He's HOME!!! He went home yesterday afternoon. After only 4 real “rehab” days on the inpatient rehab unit, he was ready to be discharged. The fevers just suddenly stopped one day and he hasn't had one since. So now we know that at least a component of the fevers was the “central fever” and the other was probably the yeast infection of his throat and mouth. All I know, is he is looking great and we have been seizure free since the day of surgery!! This is the longest is over a year that he has gone without a seizure! He still has some issues to work on, he's weak and stumbles easily. He has a “lag” time when it comes to hearing and then answering and his affect is slightly “flat” (he doesn't have a lot of emotional reaction yet to things). But all of these will improve with therapy and time. He now has a large space where his right frontal lobe once was and a smaller space where they removed a portion of his temporal lobe. These were the areas previously damaged by the surgery to remove his tumor, the radiation to treat his tumor and the chemo over 13 years ago. This has been a long time coming and we're thrilled we've finally come to the end of the seizure rainbow!!
Sergio: I feel much better than I did a few days ago. Things were looking so very bleak for our baby. He woke up with a 103 fever on Sunday morning. I called the doc on call and asked for a direct admit (rather than going through the ER). The hospital called at 10 to say his room was ready. Peter ran to the store and then brought the brood down to hang out with Joshua for a bit until I got Sergio situated in his room and then they could come up and play in the playrooms. While waiting in the admitting area for our paperwork to take to the floor, Sergio suddenly started getting the severe chills and his hands and arms went gray. Then his lips turned blue. I yelled for my paperwork and flew upstairs (with poor Marriela in tow) to his room where I began hooking him up to the monitors while I waited for the nurse to come and officially admit him. When she walked in, she assessed the situation in the same way I was and called the rapid response team and the ICU. After some team work and the pushing of A LOT of fluids, we got his heart rate down, his color improved and his blood pressures came up. All looked good and I got Marriela back with the rest of the family and into the playroom. Then 4 hours later he did the same thing all over, so this time we landed a spot in the ICU. He did it one more time during the night. His cultures grew out yeast in less than 6 hours from his purple lumen of his central line. The next day his peripheral and red line were also positive. He had gone septic with yeast for the 3rd time in 4 months. We had no choice but to pull his central line. We also have no way to now give him any nutrition. ID wants him to go 14 days from the first negative culture with no line. However, Sergio is TPN dependent and NEEDS his nutrition. We were going to try to use PPN (nutrition through a peripheral IV line, but the dextrose solution alone was blowing his poor little veins. He has had 4 Ivs in less than 2 days. Right now we have decided to only run potassium and some sugar and normal saline at hydration rate only to save his IV's so he can get his antifungal medications. There will be a big meeting on Monday to discuss the next step for Sergio. The truth is, if we have yeast one more time, there are no more places for him to get a central line and that is akin to a death sentence for him. We have also called in a line care specialist who has given us some “Sergio” specific protocols to follow to try and reduce the possible contamination of his line at home. I was feeling so defeated and could just hug and kiss my baby thinking this was the end. Now, I feel like we have a possibility at beating this crud afterall. We need to get through the weekend with no issues, we need the cultures to stay negative and we a game plan for when, where and what for his new line. I intend to implement several new steps in our care of his lines at home as well as advocate for ethanol locks for his lines. It's still a precarious situation, but more hopeful than it was 2 days ago.
The rest of the kids are doing very well. Trayvon is actually doing so well right now, we have opted to wait on admitting him to start the milrinon. His sats are going up on ROOM AIR!! Today he was 92 with no 02!!! Our local cardiologist spoke with NYC and NY was fine to just leave him listed at his current status of 2 so he continues to accrue time and if a heart comes, we'll go, if it doesn't, he'll enjoy his summer and that is that. He's happy he will not have the line or IV med until after summer ends. :-) Marriela is also doing well though she is stressed with the length and intensity of this month and my extended absence. I've been inpatient for 27 days between the 2 kids. I LONG for my bed!!
Peter continues to do an amazing job holding down the fort at home!! He's cooked, cleaned, bathed, medicated, changed beds, mowed lawns and visited almost daily. We're going to a little switching at night in the next few nights I think. We'll see. LOL
Nettie has her graduation party this Sunday at 2:00 at our Church 2 blocks from our house. EVERYONE is welcome to help us celebrate this amazing accomplishment!! Some amazing people from Church have done this party completely and utterly without me, since I have been indisposed for a bit. I know Nettie won't know or even care, but it saddens me, as her mom, that I wasn't able to make this day special for her. I know it will be, but I didn't help it to be so. . . I love her so much.
Other than that, we're doing ok.
Well, til next update,
Renee
Wednesday, July 6, 2011 7:46 PM CDT
Hi everyone!
Oh my what a long 17 days these have been, but we're making headway at getting home.
The week after his first surgery, wasn't all that terrible. Joshua slept for all but the last day and even then, was only up for short sprints of time, so he pretty much slept through his 5 days of grids. During this time he was running moderate temps almost continuously so various cultures were run, chest x-rays were done and urine samples sent off. The chest x-ray showed a lot of fluid in the left lung and poorly inflated lower lobes on both sides, thus this was the cause of the fevers they suspected. We couldn't do aggressive chest PT because of the hardware in his head, so we opted to just get him up and in a chair for most of the days. He just slept through it all.
The second surgery was looking to be as long as the previous one, but then we got word that all of a sudden, things were moving along at a very nice pace and viola, he was done in 8 hours! Whew, that was a nice surprise. He was even taken to the PICU extubated, another very nice surprise! We knew he had some issues coming into the surgery, lungs were yucky and was already running fevers, but felt like he was doing ok. He really was in a coma like state for the first 2 days and we were very aggressive with turning him, chest PT, daily x-rays and some cultures. The fevers began getting higher. He woke up and transferred to a recliner on day 3 where he actually help bath himself as well OT. Then on day 4, he was unable to wake up. He literally slept through EVERYTHING including to Arterial sticks to do some more cultures and labs. That night we did a spinal tap to rule out meningitis. His pressures were very high, but all of the findings in the fluid could be consistent with both the surgery OR meningitis, so that night he was started on a different set of more powerful antibiotics. He was still not eating and on day 5 I insisted we begin some tube feedings to help him recover faster. It was also discovered that he had severe thrush all over his mouth, lips and throat so he was started on an antifungal. After the spinal he started waking up and the next day he was looking so much better! His fevers were still there, but other factors were improving. He was transferred to the floor on day 7. He continued to run very high fevers (104 - 105) every 4 - 5 hours even on continuous Tylenol. We were very frustrated and stuck here on a long weekend (4th of July), our neurosurgeon went on vacation and none of the docs that had cared for him for the past week and a half were on anymore. We were very frustrated. Everyone has a different theory on what the fever is due to. Some say it's neurological called Central Fever, others say it was infection that is responding to antibiotics, others say it was the candida (thrush) others say it is a drug reaction. Since 4 days ago (13 days of high fevers) he began to have fever free periods. In this time he made progress in standing, eating and walking. He was able to finally remove the NG tube on day 14.
He continue to have 1 or 2 episodes a day of severe chills and then spikes a temp of 103 or so and then it comes down quickly by itself. But today he was able to go outside for a bit, then we went and played BINGO in the fun room. OT made him give himself a whole bed bath and tomorrow we're headed for the shower! He is off all off all IV meds and is disconnected. We are getting ready to transfer to the rehab unit in the next day or so. On the rehab unit he will get 3 hours of therapy a day, 2 half hour sessions of PT, OT and speech. He'll be tired for sure!! I'm thinking he'll only need a week or less of rehab and we'll get a lot more out of him at home.
Overall, he's doing ok. He's been a trooper through ALL of it. When he first came out of surgery, it was clear that he had left sided weakness (as they had prepared us for) and I was so saddened to see it. However, he is now using his left hand to write, do puzzles and play video games as well as he did before surgery. He has weakness when he walks, but that is endurance as much as it is true weakness. He was bed bound for 2 weeks so we have some work to do on those muscles, but no doubt, they're working fine.
The rest are doing ok. I sleep here every night and Peter has been coming down with the kids each day. Now that summer school has started and Casey's Place, Marriela is busy all day long. Cody loves it here and I run home to meet the bus to get Trayvon and clean a bit and set up Sergio's TPN. Marriela has had some issues with me being gone so much, but overall, she's doing very well considering!!
Sergio today has begun to have some mild issues that I hope resolve quickly. His heart rate was very high today and he hit some all time highs on his temp (100.8) in a while, so we're watching him closely. Already alerted the docs in case he needs to come in, and the floor is saving the room next to Joshua's tonight in case I get the call he is spiking a temp. But, praying that is NOT the case!!
Well, till next time,
Take Care and God Bless!
Renee
Wednesday, June 22, 2011 9:33 PM CDT
Well, we've made it through the first step. Working on the second step and heading for the third step.
Joshua was admitted on Sunday and had an MRI of his head and had his port accessed. We had a lovely Father's Day meal at Cracker Barrel as we waited for the phone call to come in for admission. The call came right as we were finishing up.
Monday we went down to surgery, where he was very calm and relaxed. The neurosurgeon had booked the room for 7 hours (as a precaution) but told us she anticipated a 3 - 5 hour surgery. Well, 11 1/2 hours later he was finally out of surgery. The scar tissue that had built up over the past 12 years was extensive and she spent 4 hours just getting through the scar tissue. He has 96 electrodes placed directly on his brain. He looked awful, but was extubated and could follow instructions when he arrived at the room.
Tuesday he eye was swelled shut and he had a total of 8 seizures. This was good, since it gave them data to map where they are coming from, the very reason he has the electrodes in place in the first place. In fact they started some rescue meds as he was actually having too many seizures. He has a PCA (patient controlled analgesic) pump where he can push the button for pain meds. I pushed it for him the first night and most of the next day. But by evening, daddy had talked to him and taught him how to use the button and he mastered it from that point on.
Wednesday, today, he has been very quiet, but much more awake. We had been told today would be worse for pain due to brain swelling, but thank God, that did not happen. In the afternoon, the docs all came in and they did the "mapping". This is where they actually put a current through each of the electrodes in his head and watch for the reaction. They look for where the motor cortex is, so that they don't accidentally cause an left side paralysis. Joshua was so compliant and tolerant of all of the twitching they caused and they're requests for speaking. He did have one seizure that was caused when they were in the area of his facial movements. I don't know what that means for surgery. I suppose they're going to offer us the option of removing the spot and chancing facial paralysis, or not removing the spot and still have a chance of seizures. I hope not, but I'm pretty sure that is whats coming.
Tomorrow is a day of rest. He has some fluid on his lungs and his stomach and bowels have only just begun to work. He has not had anything other than 2 french fries in over 3 days. They don't want to use his NG tube for food, just meds, in case his stomach stops moving all together making him vomit. So we'll get him up and hopefully in a chair and some good coughing. Also started meds to try and get his bowels working before we head into another big surgery on Friday.
Friday, go back to OR, remove all of the grids and hopefully will remove the areas that are causing the seizures, without causing permanent disabilities. Praying this is the answer.
The rest are doing well. I'll update again after the surgery and Nettie's High School Graduation!!!
With love,
Renee
Friday, June 17, 2011 7:20 AM CDT
School is almost out for the younger ones, the older ones are done and Sunday is Joshua's admit day. Been busy trying to find people to help with Marriela for the week because they only have half days of school. The 2 boys are going to Peter's sister's house each day and Sergio will have 24 hour nursing and Annette will still have Casey's Place and her worker to keep her busy. So that leaves just Marriela, LOL. It will all work out, it always does, I have no fear, just anxieties! :-)
Joshua is doing great with the idea of surgery. I explained a bit to him about what was going to happen and how things will take place. He has decided he will look like a goat with the wires coming out of his head from the grids. LOL That was all he had to say about it and was fine. He was more concerned if there was a Playstation 3 in the room as well as a bathroom for him to use. Such innocence.
Tray had a great field trip. Daddy ended up going since our poor nurse had another run of the stomach bug in her house and we just couldn't risk letting her come back with Joshua so close to surgery. I stayed home with Joshua and Sergio and took them to the Field days at school for Cody and Marriela as well as Joshua's dermatology appointment. It was a full day, but was a good day too. Tray was nervous in the cave, they went to Howe Caverns near Cobleskill. Peter said he did well though but was glad he went because there were quite a few stairs and he helped Tray with his O2 and helped pull him up some of the stairs. If I had gone with Sergio like I was planning I would have had a tough time with all of that. Since increasing his Lasix we've seen a nice improvement on some days in his sats! Last night on room air he was 87%!! We haven't seen an 87 in over 2 months even on oxygen so he was really excited. LOL
Marriela is doing well. She is going for her first visit to Casey's Place (they have to do a 2 hour "trial run" before they can be scheduled) today from 4-6. She is very excited about it. I hope she loves it because she is going 2 times a week all summer. Now we have to find other activities to fill in the remainder of her summer. Always so much planning to do!!
Annette is in the process of hiring some more workers. She has so many hours and the current worker has very few hours to give. So we have interviews today and hopefully she will make her choice by the end of the day so we can get the hiring process on the road. It takes about 2 weeks to get new people cleared through the agency that handles the paperwork, so there's always a lag time. We also called her supportive work place and had the referral made for her to begin work training this summer rather than waiting until September. She has so much free time on her hands she needs something constructive (and maybe even make money at it!) to do. She was very receptive to the idea since she was initially planning on just "enjoying her summer". I think the idea of getting paid was a real perk she hadn't thought of! LOL
Sergio is doing ok. He continues to struggle with an upper respiratory infection and his cough sounds awful, but other than needing O2 support while sleeping, he is doing good. His temps are hitting the 100 range several times a week now, but almost always in the evening and as soon as he falls asleep they come right back down to normal range. So he's doing status quo with no changes in anything.
Cody is ready to be DONE WITH SCHOOL!! LOL Each and every day he wakes up and says "Is there school today?" and when I have to break the news, he looks devastated. He just wants to sleep in and play his games and with his wrestlers and go outside and pretend he's a warrior and hunt bad guys without the bother of school. He is my kind of kid. LOL
We went to the wake of the young man who died for his country yesterday. His wife is still so confused and distraught. This is NOT how she had seen her young baby's life and her life going and clearly is having trouble picking up the pieces and starting all over. So sad.
And another fellow cancer warrior was laid to rest. May Micheal and his family know the peace and love of all those around them near and far. So few people realize how many kids are dying each year from cancer. When Joshua was diagnosed it was 1:600 kids were diagnosed with cancer, now, it's 1:450. That's on average 2 - 3 kids per school district a year are diagnosed. We have elementary schools here, where there are 2 and 3 kids either in treatment or who have had treatment or have passed from their cancer. In one school!! That's crazy.
www.caringbridge.org/visit/michaelmcbride
And yet another sad yet amazing life is coming to a close. Eithene Rose is a beautiful little girl in Boston who has lived all but a few days of the last 2 years in an ICU like setting. Her dad is overseas, fighting for our freedom, and her mom is here raising 2 children (Eithene's little brother) in a hospital. But, now Eithene (who has many of the same issues as Sergio) is getting tired and has earned her rest. The time has come to provide comfort care only. Again, may she and her family feel the love and support from around the world as she passes from this world to the next.
www.caringbridge.org/visit/eithenerosehilliard
I'll update after Joshua is admitted and we know more info on his surgery times and such.
Take care and God Bless,
Renee
Sunday, June 12, 2011 7:48 AM CDT
Well last night our weekend night nurse was a no show. We had been trying to contact her all week and she had failed to respond to any of our texts. Then last night, nothing. Just a no show. Of course, it happened while Peter was out of town! Never fails. LOL
Overall, things are ok.
Tray went to our local cardiologist to get checked out since he had such a rough week. But, I think we had turned a corner on Wednesday night and by Friday he was looking much better. He is back on his 2L of O2 and his sats are sitting in the low 80s now. He isn't coughing or vomiting anymore. The NYC transplant doc had called Friday morning and after their discussion of Trayvon again, they all agreed that as of this weekend he will go on the "inactive" list so that while Joshua is in the hospital we don't have to worry about him getting a call for a heart. That would break my heart if I had to decline, but just can't imagine how we would say yes with Joshua still in the ICU. So, that worry is now taken care of. We also agreed that he will be admitted July 5 for his new central line and start his Milrinone in the PICU. That means on July 6 he will raise to the level of 1A on the transplant list (the highest level you can go).
At this appt. however, we did find that Tray had gained 6 pounds since his last appt. 3 months ago, and most of it's water weight, so now he's on 60mg of Lasix 3 times a day!! Holy Cow that's a lot!! We're also going up on his Revatio (another name for Viagra) to see if it will relax his heart muscle even more to allow for better function. Overall though, he's looking better than he did for the past 2 weeks.
Joshua is doing well. Had a couple of seizures this week, but overall, doing well. Looking forward to getting this big surgery out of the way now! On Monday he has to go for a formal neuro-opthamology exam and visual-field testing prior to surgery. The neurologist has requested at the last moment studies that had been done in Rochester. I called and was told the best they could do was 7 - 10 days, well surgery is IN 10 DAYS!! So that isn't going to work. I called the neurologists office and told him that he was going to have to call the doctor himself to get them himself, since they clearly don't see any urgency on my end.
Marriela is doing well. She had some great days after her field trip fiasco! We haven't heard yet what happened to the teacher. She was out on Friday so I don't know if that was her plan or if she was on suspension. I've got several people working on getting some info for me. LOL
Cody is doing great. I swear he is getting taller every night!! LOL
Sergio is ok. He has an URI right now and has needed O2 for a few nights. I'm hoping that this is the reason for the increased temps and white count. He is so hard to figure out. He has 2 more weeks of his IV fluconazole to go, so praying these fevers are related to the URI and not our little nasty yeast friends trying to hang out longer than they should be. Yesterday I'm fairly confident he had a seizure while sitting on his nurses lap. His left hand went straight and was held at an odd angle and his pinky was twitching. When I looked at him his eyes were deviated to the right so I'm pretty sure it was a seizure. No more activity has been seen, but again, I worry about where the yeast might be hanging out. He's always giving me something to have an ulcer over!!
It's pouring out right now and Marriela is asking to go to the park and says she doesn't care if it's raining. . . we'll my dear I DO!! LOL So here's praying the weather makes a break for it in a little while, cause sitting inside with Marriela all day is an adventure that few are prepared to embark upon!!
Have a great day!
Renee
Tuesday, June 7, 2011 8:24 PM CDT
Ok, I'm in a better state of mind now than I was at the last update.
We made it through a rough admission and the Senior Ball. Nettie had a blast and was beautiful. She looked so classy and elegant. . . I just can't believe my baby girl is graduating. We had prepared her entire 1st grade team when we moved here, for her passing. We let them know that it was highly unlikely she would be able to survive another blood infection and we were just going to live life to fullest until that moment. And here she is. . . 16 years later. So very cool. On top of that, the girl won herself and IPAD 2 at the after dance party!! LOL Great ending to a great night.
Sergio did get to come home that Friday as well, but not without normal Sergio fanfare. That morning we had it all planned for him to be discharged by 1:00pm for me to be home to help Nettie get all ready. . . that was until we got his morning labs and saw that his potassium had fallen to a critically low level. He needed multiple IV infusions to get it up to a minimally acceptable level and didn't actually get to go home until 8:30pm that night. But, he did go home and here we are still. He stayed in the PICU right up until discharge simply because there was lots of room and they felt that he was to unpredictable for the floor. LOL He's doing well at home, though he is already having temps of 100 and his white count is up quite a bit. But, we just take it one day at a time and cram as much stuff in as we can.
Joshua is going in for his surgery in just a couple of weeks now. It's so scary and exciting at the same time! Tomorrow is IVIG day and we're going to watch him closely. It seems that he seizes a lot more recently right after getting his infusion, so we're going to see if the trend continues or was just a fluke.
Tray has been really struggling. He caught a little cold that has caused him great difficulties. He awakes each morning coughing so hard that he vomits repeatedly. The other day it happened after school as well. He is on 3 Liters of O2 all the time now and his sats are still only 80. It's hard to believe that he has changed so quickly. Praying hard that he can hold on just a couple of more weeks until Joshua is done and then we can bump him right up the list and hopefully get him his brand new heart in no time at all. He really needs it.
We went with Cody on his end of the year school trip to the zoo. It was so much fun, but we realized that 3.5 hours to see a zoo with 3, 5 year olds, is a bit excessive!! LOL We could've gone around that zoo at the pace those boys were going at least 5 times!! But it was so nice to be there and participate and not miss something due to the hospital or doctors.
Marriela also had her end of the year trip, but sadly her's went very differently. Thanks to our lovely teacher who has no skills as a teacher or parent was the one to one for Marriela on this field trip. Apparently things started to get a bit overwhelming for Marriela and instead of taking her out and letting her explore the rest of the facility without the pressures of listening to presentators, etc... the teacher took her out to the school bus where Marriela proceeded to react strongly against the removal. The teacher then told the bus driver to take them back to the school! On the way they stopped in front of our house and this teacher pulled Marriela off the bus by her arm and yelled across the street to Sergio's nurse (who was sitting out front with Sergio) and asked if we were home. The nurse said she was clearly furious and was pulling Marriela by the arm. When she said no, we weren't home, she pulled my daughter back on the bus and said lets go. Who in the world, leaves a class trip, on their own without calling a soul (we never got a phone call to let us know she was even having an issue) and then pulls up out front of a home and thinks it's ok to just "drop off the problem child". When we called the school she started in about how this behavior can't continue and it needs to stop, it's uncalled for. . .Peter point blank told her to shut up and don't say another word to us or our daughter. We immediately called the principal and director of special ed. We're pretty sure they will suspend her, but won't know until Marriela comes home and tells us that she is "out". They are going to review the bus tapes as well to see what her behavior on the bus was like as well as the language she was using and who's bright idea it was to bring her to the house unannounced! Just one more thing to deal with.
Well, that's it for now. We are preparing with the help of some dear people at our Church to find care for the kids as we go through Joshua's surgery. Then we have to figure out how we're going to be there for Nettie's graduating commencement ceremony just the day after Joshua's 10 hour surgery! UGH!! It will all work out, it always does, but still it's mind boggling sometimes. LOL
I would also like to ask for prayers for our next door neighbor. As we pulled in from picking Joshua up from his weekend away at Casey's Place, our neighbor pulled in right next to us. She was clearly distraught and I jumped out thinking it was her baby and then she collapsed to the ground as her parents came out and she said over and over, "it's not Brad, it's not Brad." Then I realized what was happening. I carried the baby in the house as her parents helped her up the stairs and into the living room where there were too fully dressed military officers there, to share the awful news that her new husband and father of her less than one month old daughter had been killed that morning in Afghanistan. It was beyond heartbreaking. He was such a good guy and was due to be done in October. He had already served 2 tours and this was to be his final tour for a minimum of 5 years. He was here just 2 weeks ago for the birth of his daughter a couple of weeks after to help his wife. He really was a great guy.
Take Care and God Bless,
Renee
Tuesday, May 31, 2011 6:39 PM CDT
Hello everyone.
Not feeling all that chipper today so I'll just give a straight forward breakdown. It's getting a bit overwhelming right now with so many big and important things happening for Annette, school ending, Sergio very sick, Joshua's impending surgery and then Tray's heart transplant right around the corner. But, I think ahead and remind ourselves that at the end of the summer, things should be much better and we should be in a much better place than we were at this time.
With that said, Sergio is in the PICU. He is septic with yeast. Not a good thing to have growing in your blood at all. We pulled his central line yesterday after spiking a very high temp but after a few hours, his temp went away, but so did his blood pressures. We were hoping for a short visit, but the docs feel that the only reason he's looking so much better right now is that he's getting around the clock steroids to help with his blood pressures. Right now he has spiked another high temp and his heart rates are very high. The PICU doctor is not allowing us to administer the Toradol that works so well for Sergio's fevers because he feels strongly that the nature of Sergio's infection puts him at high risk of kidney or bleeding complications due to the meds themselves. So Tylenol is all we're giving and he sits and cooks. BUT, his blood pressures are up now and has not needed any additional blouses of fluids to keep it there. Tomorrow we have a big day of scans and tests to see if we find any vegetations of yeast hanging around causing the continued fevers.
Joshua's surgery is now only 18 days away. That's overwhelming. I'm scared. I want soooo much for the surgery to help him in the way they think it will help him, but am terrified that we'll make something worse. I don't usually have these kinds of feelings and I'm sure it's sleep deprivation and stress that has me thinking like this.
He'll be admitted on the 19th for surgery prep. Then on the 20th he'll go to the OR for the first part of the surgery, the placements of the grids right on his brain to do invasive EEG monitoring. He will then return to the ICU where he will remain for 5 days with the grids in place. On the 24th he will return to the OR and have the grids removed as well as the areas of the brain that are the cause of his seizures. It may involve either both or only one side of his brain, the grids will determine that information. He will then return to the PICU for recovery for about 5 more days and then if needed he'll go to the floor and wait for admittance to the Rehab unit in the hospital. I pray that we don't need that component of the process.
Tray will be evaluated for admission on July 1st for his line placement and the start of his IV medication and elevation on the transplant list. He's doing ok, but wears his O2 everywhere now. He is not happy about it and who can blame him at all. I'd be pissed off too that someone told me I had to walk around in front of all my friends with this very obvious thing hooked to my face. But, I know it helps him because he clearly can walk farther and isn't as out of breath with it on, so I know it's the right choice, but not a happy choice.
Nettie's senior ball is this Friday!! I'm so stressed with how to get her shoes, her jewelry, fix her dress, etc and still take care of Sergio in the ICU and help Peter with the things at home such as the med bins, putting out clothes for the kids to wear to school each day, etc. She has a lovely date and I know she is going to have a great time. She is also excited to go to Senior Daze until 6 in the morning at a local church! LOL I think we'll get a call in the middle of the night that she's ready to come home.
She also shared with me yesterday that her Graduation Ceremony is the day after Joshua's big surgery!! OMG how are we suppose to be there for such a big event for one kid while another is lying in a hospital bed in critical condition!! It just seems sometimes that the world is throwing things at us all the time and we can't seem to get free of one crisis before another one settles in.
Marriela is doing ok as is Cody. I'll just leave it there for now.
Take Care and God Bless,
Renee
Thursday, May 19, 2011 7:00 PM CDT
I just typed a whole long update and lost it when I accidently hit the return button twice… sigh.
Just a sign of how this week has been going. LOL
Ok, lets try this again.
First, we have a date for Joshua. I will give the details of the surgery when we get closer. The date is June 20th. We are very upset that this was the date they finally gave us, as it is the first week the kids are out of school, so how are we to be there with Joshua when the other 5 are home from school. Very, very frustrating. A whole school year and that’s the date we end up with. We’ll make it work, but not happy to have to “make it work” .
Second, Trayvon. We had noticed a progression of symptoms the past 3 months that have led up to some new decisions that need to be made. We went to NYC yesterday for his check-up with the transplant team and after listening to Trayvon’s list of symptoms and I talked and they checked his echo and sats. . . they shared that his heart failure is progressing. They have been anticipating it would, as he got bigger since his heart will be less able to keep up with the demands of his growing body. They want to admit him ASAP for a central line placement and start him on Milrinone in the PICU. He only needs to stay in the hospital long enough to make sure the med works to take the work load off of his heart and that he doesn’t have any serious side effects from the medication. One of the biggest issues with this med is that it causes arrhythmia’s and this is the very thing that has caused Tray’s heart to fail in the first place. Thus the reason we need to do the med in the PICU. He is happy about needing the line though, as he HATES blood tests and IV’s LOL. With the start of this med though, it will elevate him immediately to status 1A, the highest status on the heart transplant list. So he will be called in weeks to less than 2 months. The primary issue with all of this, is that we need to get Joshua through is big surgery first before we risk Tray getting called for his transplant and we still have one in the PICU here! There is no way Peter and I could manage 2 children in serious medical peril in 2 different ICU’s and still take care of the rest of the kids. I explained this to the doctor in NYC and he smiled and said well, “I think it’s time to plan for Tray.” No kidding bone head!! I get that, we’ve been planning, but we have also been planning for the other children as well since they told us Tray would get called in 6 months or less!! Now they want me to pick one child over the other. Not a happy camper. Should be hearing from them tomorrow afternoon after their big conference where they will discuss Trayvon. I’m ready to fight, can you tell! LOL
Cody is doing awesome. He had another ear infection, but was quickly remedied with antibiotics and now we’re doing some daily allergy meds to see if that will help the fluid dry up that he has behind his ear drum all the time.
Annette is all set to go to her Senior Ball with a good friend. However, I’m soooo happy I called the boy’s mother tonight to let her know that he needed to sign a paper agreeing to abide by the schools code of conduct, because he forgot to tell his mom that he was going!! Ahh, the world of kids with disabilities!! Nettie is making these huge plans for a night with a boy who has forgotten he even said he’d go! LOL Anyways, his mom assured me that he will attend the ball. LOL Annette’s new power wheelchair arrived today as well. What a beauty it is and she looks amazing in it! It’s the straightest I’ve ever seen her sit in any of her wheelchairs. She’s very happy with it and looks very comfortable. . . unlike her old chair that she slouched and had backaches in all the time.
Marriela has been doing “ok”. Not great, but not back to where we used to be. Today was a very difficult day. She went to Special Olympics with Trayvon, Annette, and Joshua and as soon as she got there, she hated it. She was so happy to see mommy and daddy and really gave her poor aide a hard time. However, after a hotdog with daddy she came around and readily ran her race and then even joined in a race she wasn’t signed up for! LOL She warmed up to the characters walking around and all in all seemed to be happy about going. However, then Annette’s new wheelchair arrived and she went off the deep end. She feels she should be allowed to have Annette’s old power chair and we disagreed and this did not sit well. I ended up giving her a zyprexa to help calm her down and she did fall asleep but woke up more irate than ever!! I gave her some baked ziti and she ate and fell back asleep. Here’s praying she stays asleep for the night now!!
And last but not least. . . Sergio!!! He’s doing well. That’s all I’ll say about that right now since I do not want to jinx him again. He’s loving the warm weather and is very much an outdoor kid! He will sit for hours outside playing with his toys, but the rain has meant indoor time and that has not gone over very well with him. He went to the Special Olympics today with us and I was laughing as I was looking around thinking about which events he’ll be in next year!! LOL Definitely the 50m dash, we’re just going to throw his Mr. Potato Head down the track and let him run his heart out to get it! LOL Is that wrong???
Well, that’s it for now. I will be putting together some play dates for Marriela for the week Joshua has surgery, if anyone would be interested in a play date please e-mail or call me!! She is the one that needs to be kept busy and she loves going to new places but rarely gets invited. So we’d love to be able to surprise her with some fun while mommy and daddy take care of Joshua.
Take Care and God Bless,
Renee
Friday, April 22, 2011 5:02 PM CDT
Well, I did it again, I went and typed and hit the send button and the world went upside down on us. . . I think I need to rethink this caringbridge page!! LOL
Saturday morning Sergio woke up with a 102 fever. Off to the hospital we went. He was all cooled down before we even got there and I was mad we had come in. We did cultures and blood work. He was transfused since he was going to get one on Monday anyways and we waited to see if anything would grow. His labs, other than his H & H (hemotocrit and hemoglobin) being low, all looked good. He did start to run a fever in the evening and then the next morning he was 102. That night he went to 103 and then next morning more of the same. Since we really weren't doing anything we couldn't do at home we decided to go ahead and get discharged home to do antibiotics, antifungals and every other day blood work as well as hydration in between. That lasted until Wednesday morning at 2:00am when I got a text from our night nurse that he was at 105.9 and still climbing despite motrin and tylenol. Sooooo, called an ambulance since his heart rate was well over 200 and we returned to the hospital. We gave him torodol at 8:00 am Wednesday morning and by 9:00 he was fever free. WE LOVE the torodol. However, the fact that he has remained fever free with this drug tells us a few things. 1. It is probably not an infection causing these high fevers and the subsequent cascade of issues he develops. Since the fever subsided he has developed a very swollen belly with no explainable reason. His platelets fell to 22 (under 10 we transfuse), his coags elevated and his CRP was 308 (under 5 is normal) so we know he has some sort of massive inflammation somewhere. They did CT scans of his chest and abdomen as well as a dye study of his line to see if any issues could be pinpointed anywhere to explain these episodes. Unfortunately there was nothing. The thought is now turned to how to either lessen these events, since each one is getting more and more severe and better yet, how to prevent them if possible. No one has any great confidence we can prevent them, since we don't know what sparks them, but we do hope that hitting him with the torodol much earlier in the process will help decrease the overall effects. Thing #2 we learned: even when we stop the high fever, the reaction that has been set into motion will continue until it has run it's course. Immunology has confirmed my fears that each subsequent reaction could (and will be) worse unless we find a way to intervene. That has very scary connotations: he could eventually go into a full coagulation disaster since his platelets were clearly effected as were his PT and PTT times (clotting factors), he could develop irreversible electrolyte instability since this admission and several others as well, we have a very difficult time keeping his potassium in a normal range, his fever may not respond at some point and we won't be able to get it to come down without doing major damage. So for now we focus hard on the various ideas to minimize the reactions and dig deep into the brains of the doctors on the case to try and find a way for them to not happen at all.
But, tomorrow we are going home. He's using morphine again on an intermittent basis due to pain. The pain is probably due to his very swollen belly. We'll use oral (in his g-tube) morphine, but they give it IV here. Won't work as fast but should do the trick over time. We have a special lab slip now to order specific labs and cultures when he has a temperature of 102 or higher. We also will follow several other "inflammatory markers" in his blood post fever to be sure that they are not elevated all the time. Other than that, we're doing good. LOL
I spoke to people at the neurology and neurosurgery offices today. After leaving several phone messages trying to find out why we don't have a date for surgery yet, we have finally spoken to the powers that be that give the information and pick the date. We should hear back from the doctors specifically on Tuesday or Wednesday for a tentative date. Joshua has had several seizures, but he's been sitting or caught for all of them so he didn't get hurt. We anxious to get this surgery over with!!
Tray's sats were still running quite low last week and into this week, but I'm happy to say that his sats have improved quiet a bit the last few days. No O2 for 2 days now! Happy to see that happen.
Almost afraid to write that Marriela is doing well. We're happy with the current medication dosages. We'll do a Lithium level next week and if still good, then we can move to once a month for a few months and then to every other month.
Nettie went and met with her new supportive employment agency today and loved all that she heard! She was so happy to hear that there were different places she could work. But the best thing of all. . . she learned that there is a specialized travel agency that arranges trips for people with developmental disabilities!! Obviously she doesn't get that this costs money, but I didn't want to burst her bubble! LOL She is so happy about being done with school. Her class ring came in today as well so I'm going to go get that for her for Easter.
Cody is doing awesome!
Tomorrow Sergio and I will be going home. We have to get the Easter Eggs colored, I think Cody and Marriela have a lacross game at noon and then we have to get the Easter basket goodies!
Next week is Sergio's birthday!! He's going to be 5 years old, holy cow it's hard to imagine that this little peanut is 5 years old!!
Peter has held the fort down wonderfully again. Hoping we can find a way to stay out of the hospital for longer periods of time so he can focus on his work! Egads, working from home with 5 kids home on Spring Break is not a good match.
Take Care and God Bless,
Renee
Thursday, April 14, 2011 7:19 PM CDT
Well hello spring!!!
It's so wonderful to have the sunshine more days than not. It makes even the hard days better. On the flip side, the rain makes the hard days even harder. But, that's life! :-)
Several of the kids have been having a hard time.
Marriela, Cody and Tray have all had a run of the stomach bug. Still waiting on Joshua, Annette and Sergio to see if it's going to get them all (notice I discount Peter and I because I refuse to acknowledge the very idea that I could have yet another stomach bug!!). It hits hard with lots of severe, awful stomach pain and then eventually after several hours of moaning and crying they vomit and feel a bit better. It's over in about 24 hours and zofran stops the vomiting, but the pain sticks around for a good day or so. I sooooo do not want to experience this based upon my poor children's reactions!
I was worried about Cody since he had been complaining of stomach pain for over 2 weeks and then it escalated into the awful, gut wrenching agony followed by the vomiting, so I thought maybe something a bit more severe was going on. So we went to the pediatrician where we did some precautionary blood work and an x-ray of his belly. The blood work looks wonderful but the x-ray showed severe constipation. I have yet ONE MORE child with constipation!!! UGHHHHHH!!! But, I was very relieved when Trayvon started last night with the same symptoms and then vomited so I knew we had a bug in the house.
Marriela was the first one hit on Sunday, but since no one else was sick and she had only retched several times, I chalked her severe pain up to out of control reflux and treated her with some Mylanta which helped. I also gave her extra stool softener to get some success from that direction as well to rule out a back up. However, once Cody and Tray got sick, the picture fit for Marriela as well, so she was our typhoid Mary this time!! LOL
Annette woke up yesterday with another sore throat. She continued to complain throughout the day and into this morning so I called the doctor. They have ordered her a CT scan for 1:30 tomorrow afternoon. The doctor is looking for an abscess in the throat area. I did get in contact with the NP at the immunology office and she said to get her the records from all of the infections Annette has been treated for at the primary docs office and she will present the case to the team again to recommend the restarting of her IVIG. Unfortunately she is going on vacation until the week following next. But, the records were all sent today so I'm hoping she had time to review them at least and then has her case ready for the week she returns.
Joshua had his IVIG today. He's been struggling a great deal with his severe constipation and tomorrow I'm going to break down and make the referral to the clinic specific to this issue. They will do a trial run of special formulations to see if he qualifies for a surgery to implant a small tube into his appendix that we can pour a mixture down to clean him out once daily without using all of the stimulants that are causing him severe cramping and pain. We're trying to avoid having to admit him again for the big clean out that needs an NG tube and all. Other than that though, he's bee feeling good and doing well seizure wise. We did hear back from Neurology and the team all felt he was a wonderful candidate for surgery. He will be admitted sometime in the next few weeks for a two step process that I'll explain in more detail in my next update. Now we just wait for the call to tell us the date of the surgery! YEAH!!!
Tray has continued to have low sats and has had to wear his o2 all the time lately. He's not happy about it and gets all giddy when the number goes over 85 percent for even a few minutes so he can take off his oxygen. I am going to call and see if I can get him for the week after next because I have SOOOO many appointments already for next week AND it's Spring Break!! But, he has faired the stomach bug well and other than needing his o2 he's looking good. Even got a haircut today! We are all set to go to NYC in May for a check up. I'm wondering what their take on his change in status will be. . . hopefully nothing too serious.
Sergio has been feeling really good. He did have one day he had a temp of 101, but hasn't gone that high again. However, his weekly lab work has shown that his hemoglobin is dropping steadily so I requested a set of labs for today to make sure he was good for the weekend. Typically you transfuse when the hemoglobin is less that 8.0 and he is already 7.6, but, tomorrow's infusion schedule looks a little crazy so Dr. Cherrick has asked if we could wait until Monday. I'm nervous about that but will sit it out and see how he does over the weekend being so anemic. His heart rate is higher than normal due to the anemia, but his energy level and overall look is great so I think she's probably right. We also see Pulmonary and TPN clinic next week for him.
So, spring break looks like this for us. . . hold onto your hat it's going to be an awesome week!!!
Monday - Joshua and Nettie to Casey's Place
Sergio to the hospital for blood transfusion
Marriela to ped for annual physical
Tuesday - Sergio to Pulmonary clinic
Annette to primary care doc for follow-up on throat infection
Wednesday - Joshua and Annette to Casey's Place
Cody to birthday party at Bouncy House
Taking Sergio and Marriela to bouncy house also for some fun (no nurse though, should be interesting!)
Thursday - Marriela to dermatology for her awful eczema
Friday - Cody to dentist for third of his four "fillings"
in the malformed areas of his back molars.
Sergio to TPN clinic
Annette to her new "supportive employment" agency
Looking like a fun week at the curkgang's can't wait to party with us can you!! LOL Anyone is welcome to join us for any of the fun, the extra hands are always welcome!!!
Have a fantastic weekend and Happy Easter if I forget to update before then!! LOL
Renee
Saturday, April 2, 2011 5:07 PM CDT
Oh my, I told you I hate to update and then hit the send button. . . something always goes wrong.
Anywho, I sent it on Wednesday and on Thursday Joshua had another bad run of seizures. We had to use our 4mg of Ativan. It did not work after the 15 minute time limit, so we did another 2mg for a total of 6mg. I'm happy to say, this was the magic dose and no ambulance this time. He slept like a rock that night! LOL
I had emailed Annette's NP to ask her to review with the team the restarting of Annette's IVIG infusions. I have not heard back and I am very disappointed.
I also have not yet heard back from the neurologist. Very frustrating to not get responses when the issues are so important and life altering!
We did hear from both GI and the Ped that Marriela's thyroid tests that were run by GI (to check why she had gained 8 pounds in 3 months - we just contributed it to her psych meds). Apparently she has earned herself yet another doctor. She has always run border line low, since birth even. . . but now she is clearly in the low range (probably a side effect of her Lithium) and will need some sort of replacement therapy like Synthroid. She has been much more tired lately and now I suspect that this is the cause and not her meds. We're going to see the same endocrinologist that Sergio and Joshua sees. Keeping it in the family! LOL
Tray continues to have intermittent low sats and needs his O2, but is fine with it. Otherwise, he's feeling and looking great.
Sergio is having a great run. I'm going to end up shooting myself in the foot now that I wrote that!
Cody is also doing great. Going to his 504 meeting at the end of the month to continue his OT into first grade.
Well, that's it for now. Gotta go and do meds now.
Take Care again,
Renee
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Oh my goodness!! It's been 23 days since I updated!!
We continue to truck along and deal with winter. . .the never ending season this year!!
HAPPY 21st BIRTHDAY Annette Valerie Curkendall!!! You are so very, very, very loved!
Sergio just spent another 4 days in the hospital. He had continued to run temps the last time I had written. I had asked them to run cultures that Friday as a precaution. On Tuesday I got a call from surgery, that his red line was growing yeast and that he needed to be admitted ASAP to have his line pulled and to receive antifungal meds for 3 days. They waited 3 days and then he had a new double hickman put in. It took them over an hour because he has had so many lines, it's getting harder to find locations for these lines. We'll have to try and save this one for as long as we can. Joshua had his line for over 18 months with NO infections!! Very frustrating. He's still doing IV antifungals once a day at home and his TPN is now up to 18 hours a day. Hoping we can put a little weight on him and get him to grow a bit before kindergarten!! He also has been struggling with a chest cold and has needed O2 every night now for over a week. Sometimes as much as 1.5 Liters! That's a lot for him, usually 0.5 is all he needs. Today he sounded the worst he has all week, so we'll see what comes of it.
Joshua had another visit to the ER for lots of seizure activity. We had noticed he had several seizures in the day and then about 6:15pm he just started and wouldn't stop. We used our new 4mg Ativan under his tongue and waited. After 40 minutes he was still seizing along, so we called the ambulance. He had several more on the ride to the hospital and then was all done. We were checked out by neurology and instructed to increase his clobazam to 10mg in the AM in addition to his 35mg in the PM. He's continued to seize almost daily. The neurologist came in on Sergio's last day of admission to talk to me about the SPECT scan results. He says they are excellent and it shows a very clear area the seizures are starting. He's meeting with the epilepsy surgery team now (we are hoping they talked about him yesterday). Dr. Cherrick is going to e-mail the neurosurgeon to just ask if he's come up at the meetings yet and if not, can she maybe join them. I think that's a great idea!!
Tray has been struggling with a bad chest cold (as are all of us). His sats are sitting in the 81 - 83 percent range is which is quite low for him. He's usually around 88 - 91. So he's been on O2 for about 3 days now, around the clock, just trying to kick this colds but. I have to make an appointment for NYC in the next few days, we'll go down sometime mid April.
Cody came through is chest cold with flying colors!! Usually he needs a dose of steroids for a bad cold, but this time, the advair has done the trick and he's doing great! A few nebs and that was all he needed.
Marriela had a few rocky days there, but we finally have her Lithium level up to a good range and we added a tiny dose of clonidine to her afternoon regime to help her over the afternoon crankies. So far, it all seems to be working and she's doing very well right now. Sigh. . . everything is sooooooo much better when Marriela is stable and happy! LOL
Annette has yet another infection. We went to the doctor for what I thought was strep. The rapid strep was negative, but she was put on an antibiotic anyways because the NP said her neck was very swollen as were her tonsils, leading her to suspect that she may have a pocket of infection behind her tonsils. Today, after 3 days of antibiotics she finally woke up and said her throat doesn't hurt!! YEAH!!!! We also have appointment with a doctor to assess her for her two hospitalizations for the groin abcess. That's not until 4/13 though. Yesterday my baby girl turned 21 years old!! I can't believe I met her on her 3rd birthday at ICC (her group home in NYC) where she was sharing a room with one of my students from my preschool. The following September she became my student. We had her 4th birthday at ICC as well (it fell the day after Easter) and I had bought her a new dress and brought a big cake for the staff. She moved in with us that same August and we've had all of her birthdays as a family since then. She has become such an amazing young woman, it's beyond words sometimes to explain HOW sick she was for so long. We were prepared over and over for her to leave us and yet, here she is. We are immensely blessed.
Well, that's that gang.
Take Care and God Bless,
Renee
Wednesday, March 30, 2011 10:57 AM CDT
Oh my goodness!! It's been 23 days since I updated!!
We continue to truck along and deal with winter. . .the never ending season this year!!
HAPPY 21st BIRTHDAY Annette Valerie Curkendall!!! You are so very, very, very loved!
Sergio just spent another 4 days in the hospital. He had continued to run temps the last time I had written. I had asked them to run cultures that Friday as a precaution. On Tuesday I got a call from surgery, that his red line was growing yeast and that he needed to be admitted ASAP to have his line pulled and to receive antifungal meds for 3 days. They waited 3 days and then he had a new double hickman put in. It took them over an hour because he has had so many lines, it's getting harder to find locations for these lines. We'll have to try and save this one for as long as we can. Joshua had his line for over 18 months with NO infections!! Very frustrating. He's still doing IV antifungals once a day at home and his TPN is now up to 18 hours a day. Hoping we can put a little weight on him and get him to grow a bit before kindergarten!! He also has been struggling with a chest cold and has needed O2 every night now for over a week. Sometimes as much as 1.5 Liters! That's a lot for him, usually 0.5 is all he needs. Today he sounded the worst he has all week, so we'll see what comes of it.
Joshua had another visit to the ER for lots of seizure activity. We had noticed he had several seizures in the day and then about 6:15pm he just started and wouldn't stop. We used our new 4mg Ativan under his tongue and waited. After 40 minutes he was still seizing along, so we called the ambulance. He had several more on the ride to the hospital and then was all done. We were checked out by neurology and instructed to increase his clobazam to 10mg in the AM in addition to his 35mg in the PM. He's continued to seize almost daily. The neurologist came in on Sergio's last day of admission to talk to me about the SPECT scan results. He says they are excellent and it shows a very clear area the seizures are starting. He's meeting with the epilepsy surgery team now (we are hoping they talked about him yesterday). Dr. Cherrick is going to e-mail the neurosurgeon to just ask if he's come up at the meetings yet and if not, can she maybe join them. I think that's a great idea!!
Tray has been struggling with a bad chest cold (as are all of us). His sats are sitting in the 81 - 83 percent range is which is quite low for him. He's usually around 88 - 91. So he's been on O2 for about 3 days now, around the clock, just trying to kick this colds but. I have to make an appointment for NYC in the next few days, we'll go down sometime mid April.
Cody came through is chest cold with flying colors!! Usually he needs a dose of steroids for a bad cold, but this time, the advair has done the trick and he's doing great! A few nebs and that was all he needed.
Marriela had a few rocky days there, but we finally have her Lithium level up to a good range and we added a tiny dose of clonidine to her afternoon regime to help her over the afternoon crankies. So far, it all seems to be working and she's doing very well right now. Sigh. . . everything is sooooooo much better when Marriela is stable and happy! LOL
Annette has yet another infection. We went to the doctor for what I thought was strep. The rapid strep was negative, but she was put on an antibiotic anyways because the NP said her neck was very swollen as were her tonsils, leading her to suspect that she may have a pocket of infection behind her tonsils. Today, after 3 days of antibiotics she finally woke up and said her throat doesn't hurt!! YEAH!!!! We also have appointment with a doctor to assess her for her two hospitalizations for the groin abcess. That's not until 4/13 though. Yesterday my baby girl turned 21 years old!! I can't believe I met her on her 3rd birthday at ICC (her group home in NYC) where she was sharing a room with one of my students from my preschool. The following September she became my student. We had her 4th birthday at ICC as well (it fell the day after Easter) and I had bought her a new dress and brought a big cake for the staff. She moved in with us that same August and we've had all of her birthdays as a family since then. She has become such an amazing young woman, it's beyond words sometimes to explain HOW sick she was for so long. We were prepared over and over for her to leave us and yet, here she is. We are immensely blessed.
Well, that's that gang.
Take Care and God Bless,
Renee
Sunday, March 20, 2011 7:10 PM CDT
Hi everyone~
We continue to be busy here.
Sergio first. He's being a punk LOL. He has been running fevers for over two weeks now, but only in the morning and then by afternoon he returns to normal or just above normal. For a while his platelets were falling as well, but yesterday's labs show that even those were doing great. In fact, the day he had his highest temp, 102, his labs looked the best! We did go and see the GI who cares for his TPN and has taken on most of Sergio's care. He was concerned, as was I, that Sergio continues to lose weight despite the fact that we increased his TPN and Lipids last month to help him gain weight! Now he'll be on TPN for 18 hours a day so that they can increase the lipids and dextrose even more and not make his liver unhappy about it all. I'm sure that whatever process is causing the daily temps is also eating up his calories at an astronomical rate, making it hard to keep up with his needs. We are going to put his blood cultures on incubation for 30 days now to see if some rare or unusual bugs grow out, or fungus or yeast. These would be bad, but it would be better to know and treat than to not know and not treat. Otherwise he's feeling and doing great. I have his CSE this week for kindergarten in September!! I can't believe my little peanut is going to be in kindergarten. . . oh are they in for a challenge!
Joshua is doing well. We haven't heard from the neurologist yet which is highly frustrating!! We had hoped to hear to week after the VEEG and yet here we are almost 3 weeks later and no information. I will be calling again tomorrow. He had a big seizure in school but was caught by his aide as he went face first to the floor, thus no harm. Yesterday he was playing raquetball with Sergio's nurse while we watched Trayvon play soccer. While in the room, he had a seizure and fell backward into the wall. He bruised up his back, but his helmet prevented any head injury. Phew. We interviewed a couple today to take on some respite hours for Joshua. Looking forward to him being able to go out and enjoy some good recreational experiences.
Trayvon is doing great. I didn't tell you last update, but Trayvon's transplant doctor called us and asked us if we would like to be one of the families that is documented in a new series based upon the shows "Boston Med" and "Hopkins". They are doing New York Hospital and New York Presbyterian Hospital (where Tray will get his transplant). We agreed and they were here filming on Friday. Trayvon LOVED the attention and talked non-stop for the camera. I don't know about the timing of the showing, but they'll call us when they have more info on that. If he gets the call for his transplant within the next 4 months, then they'll follow him through the whole process. They may even follow him if it's after the four months because their home offices are in NYC. Tray is feeling good, still needing O2 more often than he used to. But overall, looking and feeling good.
Marriela has had some bad days and some ok days. Last week we had to pick her up twice from school. On Thursday, she was having a bad reaction to her Lithium and then began to have auditory hallucinations and was worrying the staff about her safety on the school bus. We did an emergency appt. to the psychiatrist on call. She felt that the immediate release Lithium was just too much for her to handle and we switched her to a higher dose of extended release lithium. She seemed fine on Friday morning off to school she went. We get a call at 1:30 again that she was highly aggressive and unable to remain safely in the classroom. When Peter and I went to get her, she was clearly highly agitated and didn't want to remain in the school and kept trying to "run out" so I gave her a Zyprexa at the school and brought her home. She was still VERY agitated and was trying to hurt Peter and kept crying and yelling. Eventually she fell asleep at 3:00. She stayed asleep until 7:00 the next morning. After taking with the psychiatrist again, we decided to increase her anti-psychotic medication to 6mg twice a day. That made a big difference. We know her Lithium level is still much too low, and we're getting levels tomorrow morning. I suspect that we'll be increasing her dose in the evening as well. She is still very irritable and has a hard time tolerating a lot of life's little annoyances (like sisters and brothers LOL).
Cody had his first real live nose bleed today while we were walking around the Zoo. He says "my nose is bleeding" and we look down at the ground where he's pointing and sure enough there are several drops of blood. I say it's ok, you probably have a little cut in your nose. Then I tip his head back and the gusher begins, running all down his chin, his sweatshirt, jacket, etc. He handled it like a champ though, only complaining briefly that the blood tasted bad and hurt his throat. It took almost 20 mintues to get it to completely stop, but so far, so good, hasn't restarted. My mind took me to dark places of worry while I was looking at my baby. He is looking very pale and just had a bad ear infection and now has a bad cough. My mind was saying "He needs blood work!! Make sure his platelets are ok, and that he hemoglobin is good!" But, I'm happy to say, thus far, I'm fine now that he's no longer bleeding. Once in the cancer world, you're never free of it ever again. My son had cancer, a type that is so rare it took 3 world renowned centers to correctly diagnosis it. So don't tell me the "odds are so remote". We've been the family who has anything remote happen to them. So I was proud of myself for not allowing those thoughts to stay around for more than 15 - 20 minutes or so.
Annette is doing great. She is frustrated because she has yet another cold though. I will be calling the team tomorrow to find out the status of her pelvic exam and about restarting her IVIG. She has been sick EVERY month since we stopped the stuff and we were promised that if she was not well clinically then we restart her, no questions asked. Now, they're resisting. Frustrated. Overall though, she is doing well, but we're still looking for a replacement for her worker that found a full time job with benefits. She was great with Annette so it will be hard to find someone Annette clicks with so well. Have to keep working on that this week.
Well, that's all of them. I too have a cold though and HATE spring colds!! Nice weather and then you feel like crud. Poop!! LOL
Other than that, we're all doing ok.
Take Care and God Bless,
Renee
Monday, March 7, 2011 2:03 PM CST
Oh my Gosh, has it really been a month tomorrow since I last wrote!? Well, it's been an eventful month. LOL
First and foremost, a wonderful Happy Birthday to my husband and bestest friend. It's hard to believe that we've now been together for half of our lives!! I can't imagine this rollercoaster of a life with without Peter. Happy Birthday sweetie!!
Well, since the last update, we've had 3 in the hospital. A week and a half before Joshua was suppose to be in Rochester for his surgery, we were called by Upstate that they had an unexpected cancellation for the inpatient Video EEG monitoring. We jumped at it, hoping for more information and confirmation that Rochester was doing the right surgery for his needs. We are so happy that we did the stay. Joshua was very compliant and seized for them more than happily and with great frequency according to the constant monitoring and alarms that went off all day and night. He really only had one bad night, the first night, after they took away his Klonopin. He had 37 Tonic seizures in the 40 minutes it took for the meds to kick in to stop the cluster. After that, they found he was having many absence seizures daily as well as the tonic (which he didn't have any more of after the first night!). We also discovered he is seizing frequently at night. The doctor feels that the primary focus is a temporal/frontal location which is different than Rochester was saying. They felt is was ALL frontal and thus was going to remove as much of the right frontal lobe as they safely could. This means he may be able to have much less removed!! He was also the first pediatric patient to have a SPECT scan. It's a simple scan that uses radio isotopes. Hopefully next week or maybe even this week, we should hear from the neurologist on the recommendations of the epilepsy surgery team.
Ok, Sergio. He had been running hotter last update and sure enough, he eventually got to 105 and back into the hospital he went. Joshua and I went in on Monday, and on Tuesday, Sergio was joining us 2 doors down. He recovered much faster this time around though. His fever only went to 103 that night and other than needing some blood, the rest of his numbers, though low, never dropped to dangerous zones. We think it was the combination of the steroids and quicker starting of antibiotics. He did have a very high white count and bands, so we know he had a bacterial infection, we just don't know where. In addition to that, he was RSV so he couldn't leave his room to join Joshua and I two doors down. He came home on an additional 6 days of IV antibiotics which ended Friday. However, he has still been running hotter than normal for him and I'm not sure he isn't working himself up to another fever. In addition to that, today his g-tube button broke and now I'm sitting in the pediatric surgery center, waiting for IR (interventional radiology) to come and take him back to put in a new one. Sigh.
We finally got home on Friday evening. As I was laying in bed Saturday morning, Annette says to me, I think my infection is back. I waited a bit before I had to face reality and once I checked out what she was talking about, I knew we were going back inpatient again. So off to the ER that evening and though I had to finally leave her to go home and do Sergio's antibiotics, she was finally sent to the Children's Hospital. We still don't know what is causing this infection, and we couldn't get all of the players on board to do a thorough look under anesthesia. So we were discharged after 3 days of Vancomycin and did 5 more days of oral antibiotics and await to hear when we'll take a look as an outpatient under sedation. The ID team reassured us that Annette will continue to be a patient at the children's hospital as long as she is under their care and they are going to continue seeing her for a long time to come. YEAH!!
Let's see, what else. Marriela was doing awesome, but while I was inpatient, we got a call from her psychiatrist that her Lithium levels were dangerously high. She was doing the best we had seen in a very long time and questioned the results, but agreed to stop the medication for 2 days and then restart a long acting version. We redrew her levels after one week on the new long acting dose and found her levels to be much too low. So we've re-added the afternoon dose to see if we can get her to a stable dose and level. Very frustrating!!
Cody is doing awesome. He weathered RSV as well and did well, other than several nights of non-stop coughing. He's "bored" at school he says, though it always sounds like he has fun when you ask him what he did. LOL
Tray is doing great. He was using O2 quite a bit for a while and now he's down to just night again. We do find that when he plays soccer, he drops quite a bit and takes a while to come back, but he LOVES playing so we'll tolerate it for a few more weeks.
Well, I think that's all of them. Still waiting for someone to come and take us back to surgery. . . I spend way to much time here, everyone knows me by first name!! LOL
Take Care and God Bless,
Renee
Tuesday, February 8, 2011 8:38 PM CST
I know, it's been a while. And of course in that while several wonderful things have happened. . . sarcasm inserted there. First, it has snowed. and then it snowed again. Then again, and again and again and now I'm sick of snow. It's also bitter cold. But, I'm fairly sure that most of you are also dealing with the same crud so I'll spare you my venting. LOL
Ok, where to start. At the time I left off we had opted out of Marriela's endoscopy and colonoscopy. However, where we left off she was happily eating. . . then she started vomiting. My poor baby was sick as a dog due to all we gave her. Finally she felt better. Since then we've gotten her reflux back under control. She's having less constipation and her Lithium level is perfect for her!!! She's having great days at school and though she has no frustration tolerance at all, we're seeing much happier moods and it's much easier to redirect her. We are thrilled with how Marriela is doing right now.
Cody is also doing great. He is the consimate gentalman with the ladies, though he can start a fight in the blink of an eye with Marriela! LOL
Trayvon continues to struggle with the cold weather. He's wearing his oxygen about half of the day every day now at school and at home. He's ok with it, but is happy when it's time to take it off. He's ready for the transplant mentally I think. It's wearing on him. However, before we get the call we need to get Joshua's surgery done.
Joshua has been struggling a lot with an increase in seizure activity. We saw the local neurologist and I really liked him. He told us to increase his rescue dose of Ativan to 4mg. Well only 3 days after meeting him, Joshua began clustering and we found ourselves using the new dose already. The med worked, but it took a long time so we went by ambulance to the ER to be followed in case he needed some more. When we came home he seized several more times, and then the next day 2 more times. Today we kept him home to monitor him a bit more but luckily no more. We also increased his Klonopin by a very little bit more since he can't tolerate a full .5mg increase, we are trying a .25 increase with his night dose. So now he's getting .5mg in the am and .75mg at night. Praying this holds him until surgery!!
Nettie has yet another cold. She was complaining of bad mouth pain and her cheek was alo swollen but then she started with the cold, so we think the canker sores are precursors to viruses. She sees her new doctor (primary care doc) on Tuesday. She's all happy to not be going to a pediatrcian. LOL
Sergio is running hot today. He woke up at 99.5 and went to 99.8 which is quite high for him. We were already for the trip in, but then he cooled down. I think it's coming, just can't tell you when, but it's been one month tomorrow he was discharged the last time from the hospital, so he's right on time for another admission. We'll see.
Well, that's it for right now.
Take Care and God Bless,
Renee
Tuesday, January 25, 2011 6:27 PM CST
Well, tomorrow was suppose to be Marriela's upper and lower endoscopys. It isn't going to happen. She REFUSED to take the meds for the clean out. She flat out refused saying it "smells bad and tastes really bad". I tasted it, and though it was sour, it wasn't "really bad". But, we quickly realized that the mag citrate was far to acidic for her heartburn and the lemon-lime gatorade we bought wasn't helping at all in the reflux department. I called the doctor and he agreed to stop, let her eat, give her some tums and we'll try again only using a modified, 2 day approach. I was so relieved to hear him say that. So, she ate happily and we bagged the ordeal. Her lithium level is going up, but we can tell it's not at a full therapeutic dose yet. It's funny how quickly I could tell what was working and NOT working with this med. She clearly has some room to move up I think. We'll check her levels at the end of the week.
We also have a date for surgery for Joshua. It is currently set for February 28th in Rochester. We chose to go for the later date so we have time to see the Syracuse doctors and see what they have to offer. We felt this gave us enough time to assess what is in Joshua's best interest. I'm excited and sick at the same time to do this surgery. I only have his first one to compare too and that was awful. He was debilitated for months, developed surgical meningitis and was in the ICU for 3 weeks. We were assured by the Rochester doctors that he will not have that kind of response to this surgery, but still . . . have to get myself to move past the memories.
Tray saw cardiology yesterday. He had his PT/INR and that was great. His EKG was unchanged from last time. His echo continues to show fair rt ventricle function, mod/severe tricuspid valve reflux and overall fair/poor function - unchanged from previous echos. His holter monitor reading was not impressive, other than he has very poor HR elevation. We knew this from his stress test. His hearts function at this point is only able to get his heart up to a certain level and then it stops. This is not good for overall well being, as we need the highs and lows to maintain good blood flow. The last we checked were his sats. . . they were 84 percent. Now this is not unusual during an illness at home. However, he was fine AND we always get higher readings on the doctors machine. Once I got him back to school I had him go straight to the nurse to check him on her monitor. 82 on the right hand, 76 on the left hand!! I had to break it to him that he needed to wear his oxygen for the rest of the day at school. He was very upset at first, a few tears and a revealing of fear at the reaction from a new little girl he has a crush on. I assured him that I'd talk with her if we saw her and that the rest of the class will tell her too what's going on. Well. . . at the end of the day the nurse calls to say that the sats are still in the tank even with 2l on, but Tray had discovered that the girls really dig guys on O2!! LOL He wanted to know if he could wear it more often now. LOL Today he woke up and lo and behold, his sats were fine for him, 88 - 89 range. At least now I know he isn't going to be upset when he has to wear O2 at school anymore. :-)
Sergio is being switched from hydrocortisone to predison to see if that will help with some of the reactions to fevers he has. The hydrocort. is hard on the kidneys and tells them to hold onto sodium and dump potassium thus some of our issues with his potassium levels. The prednisone doesn't work on the kidney's that way so his potassium should be much better and he shouldn't need the aldactone. However, he may become cushnoid again (the fat moon face you see with kids on steroids) so we have to watch the rest of his organs again and try to wean him off as quickly as we can. Should be interesting.
Nettie is still doing great. Her tests were all fine and she doesn't qualify for restarting IVIG. I was disappointed, but she was very happy with the results. She did NOT want to have to do the infusions again. So I was happy for her. LOL I see a big change in her health in the last few months and it saddens me to see her all achy, constant runny nose and cough, sinus crud and ear infections. But, she's ok with it all so I'll have to learn to be.
Cody is great.
Soccer starts in one week. . . oh my!!
Take care and God Bless,
Renee
Saturday, January 22, 2011 9:54 AM CST
Hi everyone,
I know it’s been a while. Life is just sometimes a case of either moving at lightening speed or. . . I’m too tired to move speed. Neither one work well for getting out timely updates.
Anyway, we’re all still home. YEAH!!
Joshua went for his MRI/CT scan in preparation for his surgery. We have been in conflict as to wether or or not we want to wait it out and see the doctors here, but since we didn’t hear from them until the day of the scans we opted to go through with the scans and be ready for surgery should we not like the time line Syracuse has to offer. However, today he had another seizure. This time in the bathroom where he took a chunk of head out when his helmet popped off and he hit a screw on the shower. I’m now feeling that the sooner we do the surgery, the better. It just will be much more inconvenient to have it at Rochester, but we’ll make it work.
Tray is doing well. We see cardiology on Monday. He is getting anxious for his transplant and asks questions almost daily now about when it will happen and talks of the great things he’ll get to do once it’ s over. I pray that his hopes are all realized and he’ll be as active as he wants to be.
Marriela was doing awesome on her new meds. I say “was” because once we started the morning dose, she quickly rose to toxic levels and began having some scary side effects. We held 2 doses and then went for some lab work. After holding 2 doses, she was still in “therapeutic” range. However, as we’ve gone on just 300 mg nightly, we’ve seen all the symptoms of irritability return, low frustration tolerance, sleep issues, etc return as the days go on. Yesterday when we had her levels drawn, it was down to only 0.3 so we’re adding back a 150mg dose in the am now. I had to use ½ a dose of zyprexa to calm her down this morning. EVERYTHING was making her miserable. She’s doing better now. Her levels should increase in the next day or two and we should start to see the happy Marriela again real soon.
Cody has his last basketball game today at the YMCA and then in 2 weeks we start indoor soccer. Marriela, Cody and Tray are all going to play so that should be fun to keep up with! LOL Tray plays goalie or half court only. The teams have always been awesome about accommodating his reduced play abilities and he’s made to feel very much a part of the team. He ages out of the YMCA programs this year so that will be sad.
Sergio is still doing good. I wish I could say the same for his pumps though! We’ve burned out several pumps with his new TPN formula, so 2 days ago they increased the fluid content to dilute it down, by 300 cc. So far, we’ve only burned out one pump, but our other one is going strong, so praying it stays that way! LOL His labs are doing much better and with the addition of the aldactone and the increase in potassium in his formula, we’ve kept his kidneys and electrolytes happy.
Nettie is doing great. We had a nice meeting with her caseworker and her plan organizer. We talked about the steps needed to proceed with independent living and how to get a home/apartment, etc. They had some great ideas. I have to go down to SSI and enroll her, as her adoption subsidy will end and SSI will pick up. This is going to be a pain in the neck, but I’m armed and ready to help make the process as simple as possible. I think! LOL We’re also looking into how to get her enrolled in other benefit programs so that we have fewer and fewer steps to do if we find a place for her. It is my hope to have ALL aspects of her services in place BEFORE she moves out vs. the other way around. We’ll see how organized I am and how persistent I am to get it all done.
The stomach flu moved through the house yet again, but we’ve all been well for the past week, seems like a lifetime since we’ve had one thing or another going through everyone! There is always something that needs to be planned for, arranged for or worried about. It wears on you at times, and then other times you forget all about it once it’s been done. And so it is, what it is. LOL
Take care and God Bless,
Renee
Saturday, January 8, 2011 7:58 PM CST
We are home. Sergio and I came home on Friday afternoon. He looked great on the outside by Wednesday evening, but Thursday morning he woke up and his labs were a mess. This admission he has really taxed the medical imagination of those that care for him. He was very sick both Monday through Tuesday morning. We began using Torodal to treat his fever and he immediately began to perk up and the fever was gone within one hour. However, he needed a blood transfusion, several doses of potassium, lots of hydration,and many big changes to his TPN. We started him on Aldactone to see if we can trick his kidneys into holding onto his potassium. We came home with borderline potassium levels. The nephrologist that consulted with us on the electrolyte situation, was somewhat positive that he won't go to critical levels. I say, somewhat, because he couldn't say positively, so we're on high alert for any "funky" looking behavior. We increased his potassium in his TPN and with the added aldactone, we're hopeful that the dr. is correct. It's now evident that his kidneys are also involved. Thus far, this, yet to be diagnosed, illness has affected his brain (the ataxia, severe pain and changes in behavior - all this has completely reversed), his bone marrow (he needs blood and platelet transfusions now whenever he is sick), his entire GI tract (he has no stomach function at all and his intestines barely work and he is TPN dependent), his autonomic system (his inability to control his temperature, heart rate and vascular reactions) and now his kidneys (they are unable to hold onto critical electrolytes whenever he is in any type of crisis). It's so disheartening to know that there is no way to know what is slowing destroying each of my baby's organs.
We were suppose to have the long awaited appointment with the genetic specialist that had lots of experience with mitochondrial/metabolic diseases. Well, the appointment was awful. First, she says she can't see me because Sergio is inpatient and she can't bill for a child who is in the hospital. Nice huh? But, she does take me back to a room where I can ask a few questions. She quickly tells me that based upon the info she has and based on all of the tests they ran, there is no evidence he has a mitochondrial disease or any other metabolic illness. Now, don't get me wrong, if I thought for a minute my son DOESN'T have a life limiting illness, I would be ecstatic! But, I don't believe it. The doctor then went on to say that maybe in 2 years they may have more research that may offer some additional insight, but she doesn't see how she can help me at all. She didn't care that everything about Sergio screams mitochondrial disorder. She didn't care that 2 years from now, if he continues like this, he won't be here. She didn't care that I was clearly distraught when I walked out. I have no use for someone like that, but we had put so much hope into her input that I was truly devastated when I walked out of that office. Only to walk back to my baby's room where he was shaking with fever and clearly not feeling well and no one has any idea why.
But, he's doing good now and that's ALL I care about right this minute.
I also fit in Joshua's IVIG infusion on Thursday and on Friday we went to his neurosurgery consult with the Upstate peds neurosurgeon. We loved the new surgeon. Now we're torn between letting them start ALL OVER here in Syracuse to evaluate him for surgery or just go with the team in Rochester. The pros for Syracuse are that he would have a local set of doctors now, instead of having to travel to Rochester for all of his seizure needs. It would be so much better for our family to have him have surgery here, rather than almost 2 hours away. But, we feel like we have a finite amount of time before we run out of Klonopin increases and therefore seizure control of any kind. So if the evaluation takes months then we are chancing Tray being called AND not having any back up meds to use. So we're weighing our options and will decide in the near future.
Marriela has also started her Lithium and we continue to be shocked by the improvements we've seen!! We started her morning dose today so we shall see if there are even more improvements in the next couple of days. I am cautiously hopeful that this may just be the drug!! God willing.
The whole family has been hit today with some sort of stomach bug. Nettie even had to come home from Casey's Place where she was suppose to stay the weekend. We all had stomach pain and some have diarrhea and Marriela vomited all over this morning. So we'll see how tomorrow goes, because we are all suppose to go down to Peter's Dad's surprise 75th birthday party!! I will be so sad if I can't go!!
Well, that's it for now.
Take Care and God Bless,
Renee
Tuesday, January 4, 2011 3:36 PM CST
I actually dread hitting the submit button on this site, because I KNOW the other shoe will fall. So. . . I reported that Sergio was doing well other than some low grade temps, all that changed Sunday night. He started with a fever which climbed steadily over the course of the night and by 7 the next morning he was 104. I brought him to the ER where he was 105.3. He looked "ok" though for someone that hot so I wasn't that worried and his temp came down nicely with a dose of tylenol on board in the ER. However, just as we were being transported to the floor he started shaking. He went from 99 to 103 in less than 15 minutes and he looked AWFUL!! The docs came a running and we earned ourselves the highest alert level on their rating system. He had the PICU team checking him out as well to be sure we were meeting all of his needs and to offer ideas. I requested steroids and finally, an hour an a half later they arrived. Within 15 minutes of his dose of hydrocortisone, he was sitting up and playing. We gave more Tylenol and he once again cooled down and actually played in the hallways and playroom for a bit. Then midnight hit and boom, he heated up like a stove and didn't cool down below 103 and his heart rate is over 160 all night. By morning he was 105 again and his heart rate was in the 180 - 200's. I talked them into trying some Torodol to see if it would work without hurting his platelets. Thank God it worked. His temp came down, BUT, so did his hemoglobin and all of his electrolytes. He received a blood transfusion this afternoon as well as replacement fluids. We also started some antibiotics as well as antifungal meds last night and through the rest of the admission. No cultures were growing anything as of today. We didn't anticipate any growth, but at least we're sure it's not his new lines or a blood infection. In all liklihood it is probably a systemic inflammatory response to some change in his body. We may never figure out what it is exactly that is causing this response, but we're working on figuring a plan to treat it faster and harder when it happens, hoping it will stop the domino effect of losing his electrolytes, blood and platelets with each fever. In turn, getting us home faster and him not getting as sick. Soo, that is it for now.
I'll update with more as we find out.
Renee
Sunday, January 2, 2011 6:32 AM CST
Happy New Year everyone!!
I really do hope that this year finds many of us in better places health wise and for many I pray that financial situations either stablize or improve. Life is just to short to worry all the time, so stop, breath and take in the joy, how ever small or big it is, all around you.
The kids are doing well. Peter has pink eye. LOL He woke up with it yesterday and got the meds last night. It should be fun treating everyone for that, because, as you know, we are family that likes to share EVERYTHING. Ugh. LOL
I went to the neurosurgery follow-up appointment for Joshua last week. Peter and I (via telephone conference) asked him all of our questions and heard his opinion as well as the teams. After "reconferring" with the team, he agrees with them all, that the corpus callosotomy is NOT the right choice and he needs a partial right frontal lobe resection. In other words, they are going to remove as much of the right frontal lobe without risking left side paralysis. It's scary to think that this is even a potential risk factor, but sadly, his brain is damaged so badly from the original surgery and subsequent radiation therapy that there is no way to stop the seizures without removing as much damaged tissue as possible. The doctor has requested a special MRI of his brain that will be on a computer that will come right into the operating room. The doctor will be able to put a special pen right on Joshua's brain and it will correspond the info directly to the images on the computer screen so he doesn't go anywhere the motor cortex and risk causing permanent paralysis. He is also requesting a CT scan to identify exactly where Joshua's current screws are located on his skull so that those same areas aren't re-used thus risking the skull dying and not refusing. The great news is that they feel that there may be as high as a 50 percent chance he will be seizure FREE and much higher chance that the seizures will be dramatically reduced, thus requiring much less medication, no more IVIG, and maybe, just maybe. . . no more helmet!! I can't imagine, really I can't. Joshua is so much work in the sense that you worry constantly about where he is standing, where is he sitting, stairs, showers, when he's away from us, not getting his meds RIGHT on time, all those IVIG infusions, ports not working, etc, etc. So I will remain cautiously optomistic. We are meeting with the Syracuse neurosurgeon on Friday so I will update with her findings as well.
Tray has made some improvements. He had been needing a lot of O2, but the cold seems to have released a bit and he's breathing much better and sats are staying in a good range. Lower than his normal, but high enough I'm not forcing the O2 issue.
Marriela has started another new med. She is now on Lithium. I have wanted to try this for some time, but the potential side effects can be very bad so we have been reluctant to go for it. However, it is breaking my heart and wearing on my soul seeing her so irritable all the time and unable to enjoy even little things for more than 5 minutes at a time. Life is not "fun" for Marriela like it should be for kids. So, with the Lithium comes lots of blood work, and a slow increase and lots of prayers that we will get more than a glimpse of who our daughter is suppose to be when she's not frustrated, irritated, or raging. On Wednesday Marriela is going for an upper endoscopy and colonoscopy to see why she refluxes so bad and why she has so many belly aches and poo issues. The clean out process on Tuesday should be lots of fun! NOT.
Annette has gone for her follow/up blood work to determine if she responded to the pneumovax vaccination. If not, she will go back on her IVIG. If she did, I don't know what to think. But, I don't think she did.
Joshua also went for his DEXA scan and bloodwork as well. He sees the endocrinologist on Tuesday to review the results of those.
Sergio is doing well. He's had some low grade fevers were watching closely, but other than draining all the time, he's looking good. I did put him on Hydration all day New Years Eve and he did perk up and looked good. I am debating whether to do some more today. Guess we'll see how he looks when he's up and moving. We see the genetic specialist on Tuesday who specializes in metabolic disorders. We've been waiting for this appointment for over 6 months so I pray she has some insight into Sergio's diagnosis and treatment plans. He is also going to TPN clinic this Friday.
Cody is doing awesome. He has such an incredible imagination and sense of wonderment about everything it's just so much fun to watch. He's the only one in the house that has been following "normal" developmental patterns. Peter and are so thank full to see him coming into his own little person, but saddened to see how Joshua "should be" developing as well.
Well, I've been asked to make Mac n' cheese and chocolate chip pancakes for breakfast so I need to run.
Happy New Year and God Bless,
Renee
Tuesday, December 28, 2010 8:01 PM CST
Hi everyone!!
Well, Christmas has come and gone. The kids had a great day and though it was chaotic and I spent WAY to much time having to untwist those stupid metal ties from the back of cardboard boxes to release the beloved toy they had to have that instant. . . it wasn't bad at all.
Joshua worried us though on Christmas Eve. I had gone to do some last minute shopping and I got a call from Peter asking where the Ativan was! Joshua had about 22 seizures that Peter and I counted and probably had many more before they were noticed since he was facing away from Peter at the time he began. 1mg did nothing for him, so I called Dr. Cherrick who said he was big enough to tolerate 2mg as a loading dose. So I gave him another one only 10 after the first and about 35 minutes later they had come to an end. He has been seizure free since.
After receiving an e-mail from Dr. Cherrick, that she and Dr. Tovar-Spinoza (the new neurosurgeon at our local hospital) had a nice talk and she would clear the way for Joshua to see her right away. The great news is that we have an appointment on 1/7! I don't know if we're going to see the new ped neurologist here or not, but I don't care. I have a good neurologist, I just want to be sure we have the best neurosurgeon for the job now! I'm meeting with the Rochester Neurosurgeon tomorrow at 3:00 to find out what he and the "team" discussed again for Joshua. It will be interesting to compare the two opinions side by side at the end of next week.
Joshua was also admitted on Monday of last week for his GI "clean out". It took a while, but once it started, it worked like a charm. He was out in three days and clean as a whistle. Unfortunately, so was I, as I had caught the stomach bug and was up all night Tuesday night sick as a dog. He was so brave in getting the NG tube in his nose. He let them try 3 times, but it hurt too much and the last time caused his poor nose to bleed all over. He shut down completely and would have nothing more to do with the idea. We had a lovely resident come in and talk with him and explained that they HAD to do the tube, but that she had never failed and it would be super fast and easy if he listened to her the whole time. Believe it or not, he agreed to a fourth try! And it worked like a charm, she talked him through it, told him to breath and the nurse had the tube in and done within 15 sec.s. Oh how I wish she had come to do it the first try! Other than needing some Tylenol to make his nose more comfortable, he was compliant, and very happy to be in the hospital, playing video games all day long on the PS3 on the big flat screen tv they have in every room! Sometimes I think I make being at the hospital just a bit TOO nice for them, as none of them care to come home any time soon! LOL
Nettie is the last one to be hit with the stomach bug. She has also had a canker sore that lasted 3 weeks and a cold that FINALLY went away after 2 1/2 months! Now she's all sick to her stomach so we have the Zofran going. She's going for lab work Thursday morning that will determine if she can restart the IVIG that i KNOW she needs!
Tray is battling a bad cold that has had him for a bit now. Christmas morning he was mad he needed some O2 for about 2 hours to bring down his high heart rate and increase his low sats. He sat with a hood on and stared at his new DSi and watched a movie until I told him he could take it off. The next day he sounded so much better, but his sats were worse than Christmas, so back on the O2. Only this time he was much better about it and we kept him on for about 4 hours. Today he made a comment to Peter that climbing the stairs must be what it feels like to a mouse to climb something big. . . not sure, but I think he was trying to say the stairs seem bigger now as he was pretty winded at the top. I'm calling tomorrow to see if there are any results on his holtor monitor results.
Cody is doing GREAT!!
Sergio is doing GREAT!! Iam happy to say that so far, so good. No fevers, drainage is tolerable. He's happy to have gotten out of the house the last few days as we have taken the kids to place to keep them busy over break. He's signing more and more words and we're thrilled!
Marriela. . .well, she's doing better with vacation than I had thought, but there is soooo much room for improvement. She goes to her psychiatrist on Thursday. I will be discussing her current meds and the fact that her "sleep" meds are clearly not making her "sleep". In fact, it feels like the opposite sometimes! you and I would sleep for a week if we took her Clonidine dose and 9mg of Melatonin. But for her, it's like candy. Going to suggest some other options and see if the doc bites. Marriela is also going to be having an endoscopy and colonoscopy on the 5th. She clearly still has severe reflux and her stooling patterns are very erratic, way too loose one day and much to hard another day so we need to see what's going on in that little belly of hers.
Well, that's it for now.
May God grant you the strength to face the day and the love to find joy in every situation. . .
Renee
Saturday, December 18, 2010 5:46 PM CST
The stomach bug has hit our house!! Cody was up for last half of the night, vomiting and running for dear life to the bathroom. He's doing better now (9:30 am) so hopefully the immodium and zofran will do their job and he will stay comfortable for the rest of the day. Praying very, very hard, this doesn't hit the rest of the family!!! What a nightmare that would be! One in the hospital, Peter at home dealing with the "crud" and Christmas only 6 days away! Can't even think about it right now.
Have a good day,
Renee
________________________________________________________________________________
Hi everyone!!
Well, we went to Joshua's GI appointment and I almost had to update from the lovely hospital again. In fact, on Monday, we will be inpatient. After discussing all of Joshua's issues and the fact that he has a neurogenic bladder and bowel, and after reviewing the x-ray of his abdomen I brought. . . the outcome is we need to go in the hospital, have an NG tube put in and. . . dump as much miralax into him as we can to clean out his intestines. He is extremely backed up. The sad part is, this is going to happen again, and again due to his nerve damage from his surgery 12 years ago. UGHHHH!! It is hoped that the clean out though will help reduce the belly pain and the need for such high doses of laxatives and stimulants to help him have any success. In the end, we may have to discuss a surgery to place a small "feeding" button directly into his intestines to administer the higher doses of meds he needs directly to the intestines. . . keeping them cleaned out. However, until we get that, as there are no surgeons here that can do it, we'll need to go inpatient and then have a strict regime at home to keep this from happening as fast as it does. Joshua is ok, so far, with the idea of having to get the NG tube. I explained it all to him and he said as long as he can bring his PS3 games with him, he'll play video games while they put the tube in and won't take it out. What a great boy we have!! Bless his heart. The reason we postponed it until Monday (the doctor had wanted us to go in on Friday) was because I expressed concern about the absorbtion of his seizure meds in the process of flushing him out. If he loses his meds too fast, then we'll have a load of seizures to contend with and we need a protocol in place to deal with that. So the GI and neurologist were consulting with each other to get a plan together for his standard meds as well as an emergency protocol. There is a skeleton crew on for weekends as well so now we'll be there when the attendings are in the building and not have to rely heavily upon the residents in the event we have problems. So, that's what we'll be doing right before Christmas.
Sadly, I am afraid Marriela will have the same thing facing her after Christmas. In addition to that, the GI said she needs an upper endoscopy to determine why she is having so much reflux and why her throat is so sore all the time. I also need to know why she urinates so many times each day. She goes over 40 times a day, every day!!! I think, like Joshua, she is so impacted that her bladder is being pushed causing her to feel like she has to go all the time! We tried the clean out process at home and it went no where. So, I'm taking her into to see the GI doc on Monday (hoping we can get her in before Joshua goes in), so he can see her and make a determination as to what we should do so we have a plan in place.
Tray finished his holter monitor, but I forgot it on my way down to the the hospital with Joshua, so I'll have to drop it off on Monday, hoping for a priliminary reading by Wednesday or so. I have no concerns though.
Sergio is no longer tolerating his feeds. Very frustrating. He is hooked back up to drainage 24/7 and is quite bloated. We made it up to 23cc/hr and then. . . he got bloated and needed O2 the whole night. So I don't know what's up with him. He looks good otherwise.
The other guys are all doing well. Just wanted to update on the ones with stuff going on.
Have a great weekend!!
Renee
________________________________________________________________________________________________________________________
Journal
Tuesday, December 14, 2010 8:50 PM CST
Hi everyone,
Holy Snow Maker around here!! We’ve seen more snow in the first two weeks of December than we did for the whole first 2 months of winter last year!! Had the snow blower repaired today. Haven’t bothered with it since it broke almost 3 years ago, but with this amount of snow, we HAD to have it fixed. We also got out the portable generator to make sure it was up and running and working well for any potential power outages coming our way with all of this weather. The boiler man is coming out tomorrow to fix our heater since it’s clearly not working like it should be and the brakes on the 12 passenger van decided NOW would be a good time to completely go out. Sooooo, tomorrow we’re getting those replaced. Thank goodness I finished all of the Christmas shopping already!
The kids are doing well.
Joshua has had several appointments. Today he went to the dentist to have one of his poorly formed teeth cleaned and the pits filled to prevent any cavities from forming. She said that he’ll need a cap when he gets older to save it, but wants to wait to be sure it’s going to stick around. Joshua has no formed adult teeth in his gum line. He has all of his back baby teeth and so we work hard to save them as long as we can, as there is nothing to replace them. If it starts to get loose, she’ll pull it and have to put in a permanent implant to fill the space, but with all of his issues the dentist would like to avoid that as long as possible. I agree.
Joshua also saw dermatology today and he is good to go for another 6 months. He is checked head to toe every 6 months since he is at high risk of skin cancer due to radiation. Other than some corns on his toes, he has no skin issues.
AND he saw Brain Tumor Clinic today where he was given a clean bill of health. They will follow up on his neurosurgery and peds epileptology referrals this week. I will call as well, since we know that sometimes the squeaky wheel gets the grease. LOL On Friday Joshua goes for his appointment with GI for all of his tummy issues. I will also see if I can find someway to get a urology referral. Joshua had his first seizure today in over 8 days so we were happy to get that long of a run out of the last med increase!!! Overall, he’s doing well and going to be going to Casey’s Place for the weekend this weekend.
Annette went to Pulmonology today. She did ok, but her PFT’s continue to be lower than they were previously, though she did better after the albuterol so we know she has some sort of “asthma” type condition. The doctor has Annette using a space chamber now to see if we can increase her medication intake to help her lungs a bit more.
Annette also went to her Senior Semi-Formal and had fun. She went with some girls I have never met as well as her reshab worker (since Nettie was in her walker for this dance I didn’t trust her to be alone the whole time without someone checking in on her! LOL). She was very happy when she got home. Tomorrow I will order her senior yearbook and next month Peter and I are ordering her class ring for her birthday. Oh my where has the time gone!!!
Trayvon had his Winter Concert tonight. It was actually very good!! I was pleasantly surprised, since most of the time, the winter concert is the “ugh” one and the spring one is where the students have really improved and the concert is enjoyable. But, this year, the band, orchestra and chorus were all very good and it was so nice to sit, undisturbed and quietly listen to my baby play the violin and sing his songs!! Tray has been feeling good and no issues at all to report.
Sergio is still doing very good. He does somethings that worry us, like having purple hands and feet and developing on an off gait issues. But, overall, he’s doing very well. Tonight he is up to 21 cc/hr on his feeding pump!! That’s the highest in almost 5 months! Very cool. He has also increased his signs to now doing “more, music, all done, 7 signs in the song Wheels on the Bus, a sign for Row Row Row Your Boat, and a sign for Ram Sam Sam. That’s 12 signs now!! Once he realizes he can get so much more from us by signing rather than leading us all over the place by a finger, he’ll pick up more and more signs. Very cool to watch his brain working and progressing like it is!
Cody, is doing great on the Advair!! I didn’t even use the oral steroid last time because he improved so much since using the Advair. So, we just do our inhaler diligently every day and we may have a mild asthma winter! Woo Hoo!
Marriela, Marriela, Marriela. Ohhhh, where to start. School first. She is doing very well there. Green dots now (the highest and best dot color) for almost a week and a half! But, once she gets home…watch out! She now also has a respite worker who comes and picks her up Monday, Wednesday, and Friday for 3 hours until the end of December. It has been so wonderful to see Marriela excited to go with someone who is just for her. They go to the YMCA for swimming and yoga and free play. They’ve also gone sledding, to McDonalds Playland and a local church for crafts. She does well on these outings for the most part, but once she gets home, she is spent and the behaviors are awful.
We’re also still working on her reflux and constipation issues so I’m sure these aren’t helping her overall behaviors either. Say a prayer we can make it through Christmas Break!!!
Well, that’s all of them.
Have fun shopping and remember the real reason for the season. . . the Prince of Peace.
Renee
Tuesday, December 14, 2010 8:50 PM CST
Hi everyone,
Holy Snow Maker around here!! We’ve seen more snow in the first two weeks of December than we did for the whole first 2 months of winter last year!! Had the snow blower repaired today. Haven’t bothered with it since it broke almost 3 years ago, but with this amount of snow, we HAD to have it fixed. We also got out the portable generator to make sure it was up and running and working well for any potential power outages coming our way with all of this weather. The boiler man is coming out tomorrow to fix our heater since it’s clearly not working like it should be and the brakes on the 12 passenger van decided NOW would be a good time to completely go out. Sooooo, tomorrow we’re getting those replaced. Thank goodness I finished all of the Christmas shopping already!
The kids are doing well.
Joshua has had several appointments. Today he went to the dentist to have one of his poorly formed teeth cleaned and the pits filled to prevent any cavities from forming. She said that he’ll need a cap when he gets older to save it, but wants to wait to be sure it’s going to stick around. Joshua has no formed adult teeth in his gum line. He has all of his back baby teeth and so we work hard to save them as long as we can, as there is nothing to replace them. If it starts to get loose, she’ll pull it and have to put in a permanent implant to fill the space, but with all of his issues the dentist would like to avoid that as long as possible. I agree.
Joshua also saw dermatology today and he is good to go for another 6 months. He is checked head to toe every 6 months since he is at high risk of skin cancer due to radiation. Other than some corns on his toes, he has no skin issues.
AND he saw Brain Tumor Clinic today where he was given a clean bill of health. They will follow up on his neurosurgery and peds epileptology referrals this week. I will call as well, since we know that sometimes the squeaky wheel gets the grease. LOL On Friday Joshua goes for his appointment with GI for all of his tummy issues. I will also see if I can find someway to get a urology referral. Joshua had his first seizure today in over 8 days so we were happy to get that long of a run out of the last med increase!!! Overall, he’s doing well and going to be going to Casey’s Place for the weekend this weekend.
Annette went to Pulmonology today. She did ok, but her PFT’s continue to be lower than they were previously, though she did better after the albuterol so we know she has some sort of “asthma” type condition. The doctor has Annette using a space chamber now to see if we can increase her medication intake to help her lungs a bit more.
Annette also went to her Senior Semi-Formal and had fun. She went with some girls I have never met as well as her reshab worker (since Nettie was in her walker for this dance I didn’t trust her to be alone the whole time without someone checking in on her! LOL). She was very happy when she got home. Tomorrow I will order her senior yearbook and next month Peter and I are ordering her class ring for her birthday. Oh my where has the time gone!!!
Trayvon had his Winter Concert tonight. It was actually very good!! I was pleasantly surprised, since most of the time, the winter concert is the “ugh” one and the spring one is where the students have really improved and the concert is enjoyable. But, this year, the band, orchestra and chorus were all very good and it was so nice to sit, undisturbed and quietly listen to my baby play the violin and sing his songs!! Tray has been feeling good and no issues at all to report.
Sergio is still doing very good. He does somethings that worry us, like having purple hands and feet and developing on an off gait issues. But, overall, he’s doing very well. Tonight he is up to 21 cc/hr on his feeding pump!! That’s the highest in almost 5 months! Very cool. He has also increased his signs to now doing “more, music, all done, 7 signs in the song Wheels on the Bus, a sign for Row Row Row Your Boat, and a sign for Ram Sam Sam. That’s 12 signs now!! Once he realizes he can get so much more from us by signing rather than leading us all over the place by a finger, he’ll pick up more and more signs. Very cool to watch his brain working and progressing like it is!
Cody, is doing great on the Advair!! I didn’t even use the oral steroid last time because he improved so much since using the Advair. So, we just do our inhaler diligently every day and we may have a mild asthma winter! Woo Hoo!
Marriela, Marriela, Marriela. Ohhhh, where to start. School first. She is doing very well there. Green dots now (the highest and best dot color) for almost a week and a half! But, once she gets home…watch out! She now also has a respite worker who comes and picks her up Monday, Wednesday, and Friday for 3 hours until the end of December. It has been so wonderful to see Marriela excited to go with someone who is just for her. They go to the YMCA for swimming and yoga and free play. They’ve also gone sledding, to McDonalds Playland and a local church for crafts. She does well on these outings for the most part, but once she gets home, she is spent and the behaviors are awful.
We’re also still working on her reflux and constipation issues so I’m sure these aren’t helping her overall behaviors either. Say a prayer we can make it through Christmas Break!!!
Well, that’s all of them.
Have fun shopping and remember the real reason for the season. . . the Prince of Peace.
Renee
Saturday, December 4, 2010 9:40 AM CST
22 days left until Christmas. . . seems impossible that we're here already. It's been a long strange year and there's still room for more strangeness to happen, but hey, that's ok. The kids are all doing well (relative to where we usually are) and it seems to be a good run of "quietness" around here. Let me give a brief update on the kids quickly so I don't forget too much.
Joshua: Went to the neurosurgeon where I was greatly disappointed to realize he had no recollection of my son, his case AND gave a completely different spin on the surgery aspect than our neurologist had. After looking at the scans briefly and asking me "why are you here?" I was already put off. Then he says that he'd be a perfect candidate for the corpus callusotomy (Where they severe the two halves of the brain from front to the back 2/3. This prevents the seizures from going from one side to the other resulting in the drop seizures.). However, we had been told over 2 years ago that this wasn't a possibility due to the fact that his original tumor had been so big, it crushed the callusom. Thus creating a "functional" callusotomy. Now this guy, who was suppose to be a part of every team discussion involving Joshua, says that this isn't true and that he has a large collosum and it's probably the reason he seizures spread so quickly resulting in the drop attacks. If this was the case, we would have done the damn surgery 2 years ago!!! UGH!!!! So, I came home and requested an appointment with our local ped neurosurgeon who specialized in epilepsy surgery in her previous hospital. I don't know when that appointment is, but it should be soon.
Sergio: We had our appointment with the GI doc who specializes in intestinal failure and TPN. We will now see him monthly and we'll have our weekly labs done on Mondays per his protocol. Sergio is also now back on some J-tube feeds. He's up to 11cc per hour for 12 hours a night of pedialyte. So far, so good. We also saw endocrinology this week. Sergio is not growing at all. He stopped about 6-9 months ago (but as anyone can see when they see him, he’s never grown well). It's probably the level of steroids he's on. We are now weaning down his hydrocortisone dose. I'm praying he can handle it. Over the summer when we tried he would have lots of respiratory and cardiac symptoms (breathing too hard and fast and rapid heart rates). So we'll see. He also said that the nutritional deficits he had in the hospital when he was sick could have been due to a kidney disorder called Fanconi’s Syndrome which is quite common in Mito kids. Next time he his sick, we have a list of special labs that need to be run on his blood and urine to determine if this, is in fact, an issue. If the labs come back positive then we need to start seeing a nephrologist as well. Then the doctor dropped a bomb shell, he said that Sergio would probably be better if started seeing someone with admitting rights to the children’s hospital and could see him each time he’s inpatient to be sure there is continuity of care across the board. The thing that makes me mad about this is the fact that this doctor is the ONLY one that knows anything about metabolic disorders (which is what everyone thinks we’re dealing with) but not one other doctor has called him for his input, his advice or suggestions on how to manage any aspect of his care – even the endocrine issues!! The one doctor that actually knows what he’s doing, is the only one that no one will call!! I have an e-mail going out to our Pallative Care doctor requesting a full care conference. We all need to be on the same page and I don’t feel like we’re there at all right now.
Cody: He’s on yet another dose of steroids for a persistent little asthma flare. We’ve started Advair as well to see if we can’t get things under better control. The doctor also wrote for some Atrovent for his really bad nights. But, so far, since the last dose of steroids, his nights have been ok, just lots of coughing during the day. He’s doing well in all other ways though!!
Annette: Continues to struggle with an ongoing “cold” if you will. She has the runny nose, stuffy head feeling all the time. She has had a “cold” for over 2 months now and really can’t wait to get her titers to see if she can get back on her IVIG!! She’ll feel so much better! She let me know yesterday that she wants to go to the Semi-Formal at school next week!! One week and she wants me to find a dress, a mode of transportation to take her to the dance in her power chair. Sigh. . . first, we need to be sure she has someone to go with , whether it be boy or girl, she needs to have some friends to hang out with at the dance. Then we’ll worry about the rest of the little stuff. Teens!!
Trayvon: Is doing great. NYC let me know he has no immunity to Hep B despite having had the full vaccination protocol. However, he does not need to repeat it for the transplant. I will be calling for his Holtor Monitor to be set up this coming week. I was going to do it right before Thanksgiving, but. . . crazy around here how fast time flies! LOL
Marriela: After several days of profound reflux issues as well as serious constipation issues, we’re on the right road to recovery. She is now on the Prevacid 2xdaily and the Carafate 3xdaily and it is definitely working for her! YEAH!! We’ve also made some progress on the constipation front as well. We’re using a combination of Miralax, Ducolax and enemas to keep things moving along. With the reduction in belly pain we’re hoping for an increase in improved behaviors. So far so good.
Today we took 4 of them in for flu shots (Annette and Sergio already had theirs) and had a check up for Cody. In just a bit, we’ll be off to 2 basketball games and then we’re going to get our Christmas Tree!! The kids are having cabin fever big time!! Makes for very long days when all they want to do is argue over who get what machine, what computer, what phone, etc, etc.
Have a wonderful weekend!
Renee
Sunday, November 21, 2010 4:13 PM CST
Ok, never posted the last updated so figured I'd just jump in, say "hi" and let you know all is still well. We have passed the 2 week mark for Sergio since his last discharge and that is quite the accomplishment for him!! Having a house full of people for Thanksgiving, so need to get some Turkey Day shopping done! I love cooking Thanksgiving dinner so it's all good with me, the more the merrier, as long as I'm not in the hospital it should be an awesome day!!
Well, that's it for now. My nephew is spending the week with us so we're back to 7 kids for a bit. It's been fun!!
Take Care and God Bless,
Renee
Hi there,
Doing a quick update from the back of the minivan bringing us home from NYC where we had Trayvon's check-up with the Transplant Team. Today we met with another one of the transplant docs, so that we would get to know more than just Dr Addinizio, who, so far, is the only one we've met. He is doing well. Puffy, but doing well. I would love to have shown up, have them look him over and say, he's cured, no transplant needed!! But, that's not what happened. He is in moderate to severe heart failure. His valves are leaking, BUT he's 100 percent stable at this time. The good news is, he is going to stay right on the status 2 list. Since he has so many factors working against him, the call will probably be longer than shorter. But, since he's stable, I'm fine with that, it gives us more time as a family, more time to work on getting Sergio stable, more time to prepare. The anxiety of knowing a call could come at any moment that will literally flip our lives upside down is such a tiring, and anxiety ridden feeling. Our lives are soooooo complicated right now with all of the health needs of the kids, that I really don't know how I'm going to do it. But, we will. We always do, though I may look 80 years old in a few short years with all of the stress!!
Many know the history of our kids, their issues and the various things they are dealing with right now. But, for those who are not familiar I'll do a breif recap of the last few months.
Our youngest, Sergio, has been dealing with many, many complications of a yet to be named illness. It is assumed at this time that he has a mitochondrial defect, but since we can't seem to identify it by any of the tests currently known to man, we're guessing. He is completely TPN dependent (nutrition via a large IV in his chest). His entire GI tract has either shut down or it goes in reverse, a condition called pseudo obstruction. As a result he typically has his J-tube (the tube in his intestines) hooked to a drainage bag so that the bile doesn't back up into his stomach where it would cause an ulcer or work it's way up his esophagus, since his stomach just sits there like a lump on a log. Recently has been admitted for several days of extremely high fevers, which respond to antibiotics, but no one has yet been able to find the source of the infection. We just finished another 5 day course of IV antibiotics at home and so far, so good 2 days out!! During these times of illness many other things begin to go wrong such as he losses almost all of his platelets, his red blood cells stop producing and his clotting factors go very wrong. To correct these issues, transfusions, has to be done very carefully, because he's so small, he gets fluid overloaded and then he needs diuretics to pull off the excess fluid, but that puts his electrolytes all off again. So, lately Sergio has been keeping me busy!
Nettie, my oldest has many health issues, but, until recently they had all been very stable. Recently however, she has been getting sick more often. Annette has 2 immune deficiencies. One was being corrected for over 6 years with IVIG, but about 6 months ago, we decided to see how she would do off of the IVIG. Well, the last 3 months have been a bit rough for Nettie. She has had a sinus infection, an ear infection, and recently was admitted for a large cellulitis in her groin area. We reran her titers to a vaccine she recieved and the numbers came back very low. She recieved a booster yesterday and we will rerun those titers over Christmas break. In all likelihood she will need to go back on IVIG again. I am actually ok with that, as I see how much her quality of life has been reduced since going off of it.
Joshua is my next oldest and homegrown. He is a brain tumor survivor for over 12 years now. The treatment however has left him with many health and developmental difficulties. The most serious health issue for Joshua at this time is his seizure disorder. He has severe drop seizures that cause him to stiffen like a board and to fall. Most times he falls straight backwards like a board, but if he's leaning over when the seizure happens he'll fall whatever way he was leaning. He's had several ER trips for stiches to close up the head wounds he's had from falling on objects. He's been on every epilepsy drug that has any known impact on this type of seizure, to no avail. He also has a Vagal Nerve Stimulator in his chest that sends little electrical impulses through his vagal nerve and into his brain on a continous basis to try and trick into not needing to seize so much. He aslo has a port-a-cath in his chest we use to give him IVIG every other week. The IVIG has been huge in stopping many of the other types of seizures Joshua used to have daily. Recently we have had more and more difficulty controlling the seizures and have had to use rescue meds several times to break a bad run. This has lead us to the decision to go ahead and have a very big and complicated surgery to remove his damaged right frontal lobe, the area where his tumor was removed and where he recieved a large dose of radiation to. It is suspected, based on many, many EEG's that this is the area that most of his seizures are originating from. There is a chance (no one is sure how big of a chance for several complicated reasons) that he may lose some language, congnition and behavioral skills. We just don't know how much of that very damaged area in the front of his head is actually doing any work for him on a daily basis and, until it's removed, we wont. So we enter uncharted waters wtih Joshua.
Marriela is our youngest daughter. She is a complicated, high needs sweetheart. She was very premature and this combined with a terrible genetic pool and in-utero exposure to crack and alcohol has left her with many difficult to treat conditions. Our biggest challenge has been her mental health needs. She has severe ADHD, Bipolar Disorder, Generalized Anxiety Disorder and probably a litany of other diagnosis', but these are the ones that are wreaking havoc on her brain right now. Since the age of 4 she has been on MANY different meds, starting from the more "benign" ones, like ADHD meds, etc to the ones she is on now. Currently she has many aggressive tendencies, NO attention span, obsessive compulsive tendencies, severe developmental delays and extreme mood swings. She is currently taking a drug in the same class as Haldol, Melleril, etc. These are the medications you often see in movies that they inject in combative patients to calm them instantly. Well, let me tell you, they DO NOT work like that with Marriela! LOL She is doing better on this medication, but there is a ways to go before we can call her "stable" yet. In addition to these issues, she also has chronic severe constipation, severe reflux and difficult to control asthma. Though many of these issues we have a pretty good control of for the most part. The mental health challenges have been some the of the most stressful issues Peter and I have yet to deal with out of all of the issues our children have. But, she is loved so much and we just keep looking for the "right" mix to help her.
Cody is our other homegrown boy. He does have some really bad asthma that has landed us in the ER far to many times, BUT, overall, he is a very happy healthy little boy in kindergarten!! When he was younger he had some catching up to do and needed some therapy to bring his speech and fine and gross motor skills in line with is physical desires. LOL Now he just gets some OT in school to help his writing skills. He's VERY active and LOVES sports, with a competitive streak a mile wide (didn't get that from me in case you were wondering!).
You can read about our little Ethel up above so I won't repeat her whole story. She was as sweet as she was loved. I miss her and only had the joy of knowing her a few months. Marriela LOVED her little sister and still talks about her daily. I love that she remembers her so fondly.
Well, that's my crew.
Take care and God Bless,
Renee
Friday, November 12, 2010 10:16 pm EST
Hi there, quick update,
We got home Wednesday after all. All of Sergio's numbers made improvements by afternoon, so we were allowed to come home. Since then, he has been feeling good for the most part. He's retaining a lot of fluid. While we were inpatient (actually, while still in the ER) the lab work showed Sergio to be suffering from some severe nutritional deficiencies. Since he is TPN dependent, his life line is the TPN. It hadn't been adjusted to meet his needs in quite some time, resulting in many dangerously low levels of critical electrolytes. The doctor from the hospital re-wrote his TPN order and had it set up for us at home. Sergio has responded very well too it according to today's lab work. He has also had a complete resolution of the bleeding issues he had. However, we ran into another issue. Now his liver is very unhappy and his triglycerids went from 92 on Wed. to 500 today. We are going to give his liver a rest by slowing down the TPN to over 16 hours vs. 12 hours and we are going to take out ALL fats for 2 days. Then on Monday we will rerun all of the labs. We also came up with a plan for if his fever returns after this round of antibiotics ends on Monday. If he has a fever within 48 hours of the antibiotic ends, we will direct admit him to the hospital again and begin searching for the infection source. He may have an abscess which is being surpressed by the antibiotics, but flairs as soon as they're stopped. He'll get a CT scan from head to toe and maybe a nuclear scan to see if anything is deep seeded in a bone or tissue. But, we're praying and crossing our fingers that he's on the right antibiotic to KILL this infection once and for all!!! We've had to use a bit of lasix yesterday and today to pull off about 5 pounds of extra fluid. Today he was just shy of 2 pounds of fluid so we pulled off quite a bit yesterday.
Other than that, he's doing great!! LOL
The rest are also doing well.
Joshua had his MRI on Thursday and Dr. Cherrick called us by mid afternoon with the wonderful news that the scan was "perfect for Joshua"! So there's nothing in his beautiful head causing the extra seizures, just the old crud that we're going to have removed. YEAH!!
This Thursday is our trip to NYC with Trayvon for his check up. All should be good there, but it seems each time we go, they throw us new surprises. LOL
The rest are doing good. Gotta go and do his antibiotic now.
Take Care and God Bless,
Renee
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Wednesday, November 10, 2010
Hi there again. I'm yet again in the hospital, this time with Sergio. After several days of progressively higher temperatures (and people telling me this was his autonomic system going haywire and/or a virus) he decided he was going to go gray and mottled and need a quick trip straight to the ER. We were admitted where he "cooked" at 105 degrees. He started IV antibiotics. I had mentioned as well, that his central line looked like the "cuff" (the little balloon that keeps the line anchored in the vessle) had come out of the opening. They took him down yesterday to be evaluated and determined he needed a new line stat. However, while waiting we discovered his platelets had once again crashed and they were at 49. Not normally transfuse level, but low enough no one in interventional radiology wanted to do the line. We decided to go for the new line and transfuse only if needed, well, things went a little awry and they had a very difficult time getting the new line in on the same side as the old one and he started bleeding so he got the transfusion. The pediatrician came down and explained that it wasn't an option to NOT do the line, so they decided to keep him intubated and go for a new line on the other side. It took a while, but he did get it. While this was going on, they took some new labs and found that his bleeding times were all way off and they were worried about something called DIC, which is very bad and can be lethal. I signed consents for emergency blood and plasma transfusions, but good ole Dr. Cherrick slowed everyone down and told them to try high dose vit. K to see if that would help first. I'm happy to say that it did and though his numbers are still far from normal, they are no longer "critical". He had everyone scared for a bit! So we are now working on the thought that he has an infection, that clearly isn't showing up in the cultures or blood. We need to find it, because it's causing enormous issues for my baby. Overall, today, he looks much better. A bit swollen and bruised from the procedures yesterday, but not bad. Using a bit of Morphine to keep him happy.
Joshua is down stairs getting his IVIG. Little stinker told the nurses he didn't need me, to say where I am, he'll tell them to call me when he's done. LOL Tomorrow is his MRI, and I'm so happy!! I NEED to know that all is well in that big old head of his. I am so worried that he has something else going on and that's the reason for all of the new seizure activity. Already told the docs, I need a reading tomorrow!! LOL
Tray is still puffy, but otherwise looking good. Going to NYC on Thursday next week for a check up. He turned 12 on Sunday!! We waited for Nettie to be discharged and then we all went (minus Sergio) to the Spaghetti Warehouse for his family birthday dinner. He also brought friend. Monday I dropped off a Birthday Cookie and juice for his class to have and this weekend he is inviting three of his friends out for laser tag!! Sounds like fun to me! Can't believe my baby is 12 oh my!! He had a great Parent/Teacher/Student conference and other than organization, he's doing very well.
Cody also looking great. He had a great Parent/Teacher conference too. The teacher said that he still needs the OT for sure, but he is making progress. He has a tendency to sprawl around on the floor at circle time and needs help find a way to sit quietly, but does so very well when asked. He is a social butterfly and a friend to all. Cool!
Annette is well on her way to a full mending. She is at school, is pain free and most of the swelling is gone. She will continue her antibiotic for another week and she should be as good as new. We'll talk with the docs about restarting her IVIG as well.
Marriela, was doing very well. But, recently she is having issues at night again and Peter has had to use the Zyprexa the last 2 nights in a row. They are working hard and furious at school to get her a 1:1 aide (right now she is a 2:1 shared with another child) so she can be free to be removed when needed to find appropriate outlets for her "energy level" LOL. Overall though, she's better than she was and that's good, we'll take it. Marriela's conference was focused more on the "how can we help her" rather than the "she is doing well in this area and not in this area" type thing. She is so difficult to reign in for attention and her behaviors keep her so active, that learning right now is a difficult process. Working on it though.
I took 4 of them to the dentist yesterday before the parent teacher meetings. Tray has such a hard time with the scraping part, but I'm happy to report that he and Marriela are cavity free. Joshua has one small area on a tooth that is badly misformed due to his chemo, and that will be easy to fix (won't even need novacain). Cody, unfortunately, has 4 cavities. One in each of his very last molars. She feels it's probably a defect in the teeth due to the fact he has a spot on all four of the molars. She will need to use the laughing gas and novacian, so we're making insurance arrangements for that to happen. Other wise, they're mouths are all great!
Well, that's all of them. Right now, focused on getting Sergio better so we can stay out of the hospital for a bit. Trying to get some Christmas shopping done. UGH!! LOL
Have a great day!
Renee
Friday, November 5, 2010 6:31 PM CDT
Hi everyone!!
Thought I would try to get on here and do an update. It's been a busy couple of weeks.
First, we're inpatient again. . . only this time is Nettie!!! Yep, she is a patient for her last time in the Children's Hospital (after this she'll be too old UGH!). She has an abcess in her groin area that is causing us some major discomfort! We need a CT scan to rule out the need for surgery and she'll start IV antibiotics in the next hour or so. Unfortunately, it's an antibiotic that she reacts strongly too, so they need to premedicate her with Benadryl and then run it very slow, to try and prevent her from having some severe reactions. So far, the surgeons feel that there is nothing they can do surgically to help, so hopefully just some nice meds and we'll be on our way. This is following several days home from school for a bad ear infection and sinus infection that caused a lot of dizziness and vomiting. Poor baby can't seem to catch a break! I'm thinking she needs to be back on her IVIG to stem these infections.
Next, Sergio. We finally got out of the hospital (see last update) and though he clearly had an infection somewhere, no one ever found it. We did another 7 days of IV antibiotics at home and he was great. While inpatient he needed his first blood transfusion, and we were very close to needing a platelet transfusion. Then he had a nice quiet couple of weeks. This week he was working on trying to go back in the hospital. He even hit the magic 101.0 temp. But, he looked good in all other areas so we decided to do labs at the pediatricians office instead. So far, everything looks perfect on paper. He's having a lot of trouble managing his temps, he runs hot and less than an hour later he will drop 3 degrees. This is a defect of his autonomic system, which is clearly the system that is affected by this virus. The last one wreaked havoc on his bone marrow, but so far that is holding up fine this time around. Overall though, he looks and feels good, so we're happy!!
Joshua had another night of multiple seizures and we had to use his Ativan again to stop them. Luckily, the Ativan worked wonders after just one dose. We are increasing his Klonopin again and have called the neurologist to set up an appointment with the neurosurgeon as soon as possible to discuss to surgery to remove the remainder of his right frontal lobe. Last week he had a seizure in the bathroom that could have broken his neck so easily if he had hit the sink just right with this chin. Then on Halloween he had a big seizure that caused him a concussion, but it could have been sooooo much worst. He was standing there waiting for me to put mittens on Cody and boom, straight back on the pavement. He had his helmet on, but it popped off at the blow, and he definitely hit with his head directly as well. So it's time to move forward. We will see the neurosurgeon on the 29th. Otherwise, he's doing great.
Trayvon has been waking up very puffy the last few mornings. Not sure what's going on, but he's definitely retaining water!! We are going to NYC for a check up with the transplant team on November 18th. We'll see if they have any ideas on how to reduce the fluid retention. He's doing great in school. . . at least I think he is! I have parent/teacher conferences this coming Tuesday, very excited to see how they are all doing!!
Cody is doing wonderful. He did complain again last night of his ear, but so far today no complaints. Peter is watching him and if he complains again, he is going to take him up to the pediatrician before his basketball game tomorrow to have his ear checked. He is such a little actor and charmer. He knows how to "work" the adults to get what he wants! LOL
And Marriela. It's been a rough couple of weeks. We've tried several medication changes and she has just become more and more aggressive and unstable. I called the psychiatrist out of desperation on Tuesday night and we made one more big change. It's like a miracle has occured. The last two days she has had wonderful days in school. Now, I should preface this by saying "wonderful" in our world is the following. . . she was able to stay "near" her class even if she can't go in due to aggressive behaviors. Wonderful means she didn't sit in the principal's office due to hurting her friends. Wonderful means she didn't cry for over an hour that she is "bored and she quits". Wonderful means she actually accomplished 2 or more academic tasks. All of this is with an intense one to one aide, but. . . she is doing it. Well, yesterday was a good day and today was a Wonderful Day!!! Peter says she is like a different child at home, sitting watching a video, laughing. She even cracked a joke and complimented Peter's "hair cut" (Daddy's bald!) and then laughed hysterically because she got the joke! Oh how I would have loved to have been there for that. I miss my baby's laugh so much. It's such a rare thing these days. I can't wait to see her tomorrow and experience the happy side of Marriela for myself!! The difference has to be the new med we started, Trilafon. It's an old anti-psychotic medication in the same classs as Haldol and other powerful meds). We started her on a low dose and will increase it only as needed. It has the potential for some serious side effects. But the unstable Marriela also has some serious side effects, so we feel at this point, they are worth them if she is enjoying life again!!
Well, that's it for now. We are awaiting the call from CT scan to take Nettie down. She should be starting her Vancomycin any moment now as well.
Take Care and God Bless,
Renee
Friday, October 22, 2010 8:04 AM CDT
Hi everyone,
Well, the last update was the calm before the storm.
The very next morning at 5:30am we heard a loud crash from the boys room and Peter ran to find Joshua lying on the floor. We weren't sure if he had a seizure or if he had tripped trying to go to the bathroom. Well, once he was in the bathroom, he had another one. So we knew he had a seizure. It was quickly apparent that this was a problem as the seizures just kept coming. I gave him his oral rescue med, but it didn't kick in and I didn't trust giving him another drink of water due to choking on the water. So we used the Diastat for our first time and then called the ambulance. He had 22 seizure that we saw. I am suspicious that he was having them in bed, thus the reason he tried to get to us without his helmet on. He stopped seizing as soon as we were in the ambulance and other than getting some blood work, they did no additional treatment for him and we went home just 3 hours later, seizure free thus far. We don't know what caused this episode, but praying hard that it's far behind us now!!
Then to add to the excitement yesterday morning Sergio woke up with a 103.6 temp. So I had to hurry up and throw my house together and prepare for the inevitable admission to the hospital. We took him up to the pediatrician who drew labs, cultures and assessed him. We were all fine with him staying home until someone called to say we had positive cultures and to head on in for a direct admit. But, the call never came. However, at 6:00 am his temp was just a tad shy of 104 with both Motrin and Tylenol on board so I decided it was safest to bring him in to the ER for evaluation. They redrew his labs and some more cultures. The labs show clear signs that this is not viral and though the cultures were still negative, his white count had gone from 11.0 to 16.8 in less than 24 hours. So we're inpatient and last night he was cooking! We were hitting him with everything and he finally started to cool down around 4am. He's enjoying his vibrating vest therapy right now as I type. We're going to do some blood work to see what direction his white count is going. Hoping his cultures stay negative!!
Marriela has also had her calm before the storm. Things have been steadily escalating and on Wednesday she had a terrible day at school and they had to write an incident report on her for hitting and kicking kids and a teacher. Sigh. We saw the doctor yesterday and she has added Klonopin (in a very low dose) to Marriela's meds. I am praying hard it works and works soon. Peter had a heck of time getting her to bed last night and she woke up at 3:30 and needed a lot of help in going back to sleep at 4am. Those lost hours of sleep are so hard on old people like Peter and I!!! LOL She did also see the dermatologist which was a joke because they just re-wrote the same scripts we've been doing with only minimal help.
Annette, Cody and Tray are actually doing well. Tray missed his cardiology appt. on Wednesday because I had to take Sergio for his blood work.
This weekend Joshua's at Casey's Place and Cody, Marriela and Tray have their Halloween Dance tonight. We have our costumes all ready and should be good to go. I'm going to slip out of here for a bit to see the kids at their dance. I just hate leaving Sergio when he's been so hot. But, he's acting fine in most other ways.
Well, that's our excitement for the week! LOL
Take Care and God Bless,
Renee
Monday, October 18, 2010 8:01 PM CDT
Hellloooo!
I have been reminded that it has been 10 whole days since I updated and the last one was kind of a bad one at that. So here I am with a current update on the 'gang'.
Me: Doing just fine now. Completely recovered from my cold or whatever terrible virus took over me for a while. Nettie and Peter are now having their (much more minor) versions of the same yuck.
Marriela: Doing much better. We took her down to virtually no meds at all, except somethings to help her sleep. We have since added back some of her original med, Abilify at very low doses to see where and when it helps the most without the concerning mouth movements. So far, so good. She is still an extreme case of ADHD, with virtually no ability to focus on anything for more than a moment or two. She has NO frustration tolerance at all and as soon as something isn't EXACTLY the way she thinks it should be, she flips out. But, in reality, this is the way Marriela has been since she was 3. At this time, I'm not sure we can have both mood stabilization AND and sort of attention improvement. Any treatment for ADHD makes her mood disorder much, much worse. And in some cases, the very drugs to improve her mood disorder, make her extremely unstable (that's what happened with the Depakote). I am going to be far more cautious in when and why we are adding more meds in the future. Overall though, she's doing much better. I don't know if the school agrees, as we are having some serious issues there, but home is better and for me, that's enough to smile from ear to ear right now.
Joshua had come off of the Klonipin finally!! And then he had 3 seizures in a row at the YMCA while I was watching Cody's football game. So, he's back on the .25mg in the morning only and that seems to be all he needs to hold him in a seizure free state for the time being. Again, we'll take it!! LOL He's happy and talkative and liking school very much, so we're happy as well.
Trayvon is doing well. We see cardiology this week on Wednesday. I'm sure we'll do the echo and ekg and check up. If we don't get a call soon, then our next cardiology appt will be in NYC in January. I'm not sure if they will increase his status at that time, but honestly, the holidays will be over, kids are in school for another 6 months, it would be the ideal time to have the transplant happen. We'll see how it goes on Wednesday though.
Sergio continues to be very stable. Tonight we started him on 5cc/hr of pedialyte in his J-tube, so we'll see how that goes. He is still draining pretty well, but it's a lot less that previously, so we'll see. His potassium was high last week, probably since he needed some additional hydration which has potassium added, so I'm interested in his labs taken today. He's doing well in his therapies and overall I'm very pleased with where he is right now.
Cody is LOVING football!! And, he's good at it. He had a touchdown, a fumble recovery for another touchdown and a beautiful tackle (which I missed 'cause I was peeling dirt out of Joshua's teeth following his seizure). He's making Coach Daddy very proud and mommy very nervous! I don't like football for my little skinny guy! School is going well, but he's still struggling a lot with his writing. He did show me he could count to 100 though!!
Annette is doing wonderful other than a little cold right now. She is going, going, going all the time now! Zumba, water aerobics, walks, workouts in her room, grocery and Christmas shopping, learning to make calzones, getting her own Wegman's card, etc, etc.!! She tires me out just thinking about her schedule! LOL She just had her Senior pictures taken and she looks beautiful. Once I get permission, I'll post a picture of her.
Well, that's all of them. Yesterday we went to a wonderful place sponsored by our Church and had an awesome time. It was the perfect size, speed and level for Marriela. We went fishing, went in a canoe, rode a paddle boat, took a hay ride and petted a goat. We also had some wonderful s'mores over a big bon fire. Loved it.
Ok, that's all for now. Take Care and God Bless,
Renee
Friday, October 8, 2010 3:54 PM CDT
Helloooooo everyone!
Feeling better. Not great, but definitely better. Have a terrible cough still but the fever, aches, chills, headache and other general crud, has left with just a chest cold in it's wake. I can deal with this.
We've had a very rough week here. Between me being sick and Marriela being the most unstable she's been in her lifetime, things have been very difficult. She has awoken nightly for up to 6 hours raging, screaming, ranting incoherently about anything she can, kicking, trying to leave the room, head butting, etc. We have used the emergency med that we had, and it hasn't worked like it should. It took over 2 hours to finally put her back to sleep last night. School is no better, she's struggling there as well, but at least while there, she is safe and has many people to help vs. home where it's just Peter and I. And this weekend, it's just I, as Peter is at Penn State. I went to her psychiatrist today to discuss medication changes and I think we have made some that will help bring her down some and get us back to at least where we were before this nightmare started about a week ago. Please pray that we have made the right choices. The only other option we have is to take her to the ER and have her admitted, remove ALL meds and then start over again. But, to do this at home is dangerous in case she becomes a danger to herself or others in the home. I love my daughter so much, this is just killing me inside. I honestly had no idea how hard this would be. . . but, for those thinking it, no, I wouldn't have changed a thing and still feel blessed she is our daughter. We just need to work harder to help her feel better.
Tray has a bad cough still as does Cody. Tray and Cody are doing nebs a couple of times a day. Cody is now on an antibiotic due to this lasting for almost 2 weeks. Tray has had sats as low as 83 in the morning despite being on O2 all night so we're watching him closely.
Nettie is doing great! She is doing a fundraiser for her senior class selling magazines. She has sold 18 subscriptions and if she sells 20 she gets a free senior ball ticket as well as a host of other cool gifts!! She is quite the sales person! LOL We thought yesterday was our day to do senior pictures, but there must have been a mix up, since the photographer wasn't there. So we'll call to reschedule that. Last night she did a Zumba class and Saturday she's doing a yoga class at the YMCA. She NEVER slows down!
Joshua is doing very well also. He is going to go off of the last tiny little dose of Klonopin he's been on and I'm hoping that this will be the final break from this med! He's loving school and seems very happy overall.
Sergio is very stable right now. We were doing daily hydration but it appears the Neurontin is finally working and his J-tube drainage is slowing WAY down and he's having normal-like stools again!! So we haven't run any hydration in a few days and he's still doing very well. All of his therapies are back in full swing since deciding not to send him back to center based preschool. Overall, he looks great.
Well, that's it for now.
Take Care and God Bless,
Renee
Sunday, October 3, 2010 3:22 PM CDT
Hi everyone,
I come to you from my bed, where I'm actually quite sick!! I have looked it up and see no evidence that the flu is in our area, but let me tell you, I, unequivocally, have the flu. It started with what I thought was a head cold on Friday evening and then progressing quickly over the day Saturday to last night where I spiked a nice temp, had the chills, severe body aches, worst headache in my life and my lungs are on fire! I actually just did a nebulizer because I was so short of breath after my shower. I haven't been this sick in over 10 years. Peter has been awesome keeping the kids busy today so I have been just resting in my room trying to stay clear of all the kids. This would be devastating for Sergio and Trayvon! Luckily, Sergio is the only one who has had his flu shot.
As for the kids. Sergio is doing ok. He is doing daily hydration for 10 hours and then doing the TPN for 12 hours at night. He's draining continuously from his J-tube despite the addition of neurontin to see if we can improve the pseudo obstruction. There is talk now that he may need an ileostomy to move the bile in the right direction and reduce the chance that he'll begin to infect himself more often since his GI tract is so frail right now. I am reluctant to even allow that talk now though, as he is doing well and we're not going to do major surgery that may or may not do anything positive for him.
Joshua has only had one small focal seizure since adding his morning Klonopin back to his meds. Tomorrow we will take his dose down by half in hopes that weaning this last little bit very slowly, we'll be able to wean him off once and for all.
Trayvon has been good, but yesterday started with a pretty severe cough. He even asked for a neb treatment last night, as the coughing was causing him to feel sick to his stomach. Hoping this is just a little of what Cody has had and that he'll get over it just as quick as Cody and doesn't turn into what I have.
Cody is on steroids right now. I arrived home Wednesday night from the hospital with Sergio (and Joshua who was at the clinic all day getting his IVIG) to find Cody with an unrelenting asthma cough. I started a lot of neb tx and took him to the peds the next day where we started steroids right in the office because his sats were only 91 percent! But after another albuterol tx his sats came up to 95 so she told us to go home, do nebs every 2 - 6 hours (start close and then pace them out as we can)and do the steroids twice a day. He turned around by late yesterday and we didn't even do any neb treatments last night or today. Once the steroids are done though, he'll go back on his Pulmicort daily to try and prevent these episodes from happening any more.
Marriela has not had the nice response to her new meds as we had hoped. In fact, she is the most unstable she's been in a long time. It's so hard to see her so angry and frustrated with life in general. She worries me so much. Her issues and medical needs (because her problems are as medical in nature as are the rest of the kids) are by and far the most difficult to handle. There is no magic pill for the mind even though it's her brain that is the problem we can't "find" the problem in a picture (MRI or CT scan), we can't do a blood test, or take a sample of something to get any answers on how and what to treat. Her risk of suicide is enormous and we just can't seem to find the right combination of meds to help her for more than a few months at a time and even then, we never see the real Marriela for more than a few moments at a time. But, it's those moments that show us that she is still in there and we WILL find a way for her to be happy more than not!!!!
Annette is doing awesome. We're not all that thrilled with the new program at her school that replaced the old "Project Help". The program is 5 days a week, half days. But this prevents her from being able to do any of the community trips with her class or participate in school events. She also doesn't like that they don't really go out in the community to job sites until more than half way through the school year. I will seriously think hard about allowing Joshua to participate in this program next year!
In addition to all that has been going on with the kids, we had a the lovely experience of another flood in our basement. After three days of rain, our sewers backed up AGAIN, and there was over 8 inches of water in our basement. It caused the hot water heater to go on the fritz and we had to go out and buy a $200 sump pump, a $200 dehumidifier and then had to pay a handy man to fix the hot water heater (thank God for people who are willing to go out of the box!!). I'm happy to say we have hot water again and the basement is almost dried out. Going to have a meeting with the Village to see if we can get some of the expenses reimbursed since this is a problem that THEY need to fix, nothing we can do on our end.
Well, I'm ready for some sleep.
Take Care and God Bless,
Renee
Sunday, September 26, 2010 8:51 PM CDT
Well, the cultures are in, all three of them grew out a nasty bug called E. Fecalis. Yes, it's origin is right from where the word sounds. Unfortunately it is a bug that lives in our GI tract, our skin, our possessions, everywhere. So, we don't know how it got in his blood, but it did. The ID team assures me that it had nothing to do with cleanliness or how I handled the line, but let me tell you, I was not happy. The antibiotics were changed today to Gentamycin and Ampicillin, his PICC line was pulled and we put an IV in his hand. It was a hard stick and took three tries, but it was a good IV and in a great place (top of forearm) so I'm praying it will last until the new line goes in. We also drew a new set of cultures and the new line can go in when the culture returns negative. So for now, we're planning that this culture will be negative (since he's been fever free and feeling great)and therefore can have a new line inserted on Wednesday. I also have to take Joshua to his IVIG on Wednesday as well, so it should get interesting here. LOL Overall, it's good that the line was discovered to be infected before we had the new line inserted because then we would have had another line infection in no time. I am pushing to have his GI study done as well while we're inpatient because there is a chance that there is something can be done to make it work. A small chance, but a chance none the less, so I want the study to know!
I did go home tonight for a couple of hours to pick out their clothes for tomorrow, make dinner and put Marriela to bed. I miss my family so much when we're apart. I am going back tomorrow night as well, but Peter is going to stay with Sergio. School pictures are on Tuesday so I have to go home and do Marriela's hair, get the boys showered and chose their picture clothes.
The gang seems to be doing well in my absence LOL. Joshua has been seizure free since adding the Klonopin back to the picture. YEAH!! We'll try weaning him slower in a week.
Well, he's asleep so I'm going to get some shut eye as well.
Take Care and God Bless,
Renee
Saturday, September 25, 2010 4:59 PM CDT
I greet you from good ole Golisano Children's Hospital yet again. Yesterday, after a couple of days of low grade temps, he decided to spike a lovely 102.5 again. We went to the pediatrician's office to draw labs, cultures and had a dose of antibiotics. He looked great, other than being dry again and needing more hydration and having a recurring temp. At 7:30 pm, only 7 hours after getting the culture, he had a positive response. This means that one of the lumens of his central line was growing bacteria. It was the purple one. So I had to bring him inpatient. I was pushing to go home today on IV antibiotics until I found out that he was also growing bacteria from his red lumen AND his blood, so the bacteria was in his blood stream. This is dangerous and could make him deathly ill quickly if we don't treat it with very strong meds until we find out exactly what bug is growing (that should be tomorrow). With this info, we need to pull the line (needed to anyways) but that means he has to have a regular IV for 2 days before they'll take him back to surgery and put in his new permanent central catheter. He is going to be miserable and this is going to be hard on him. In addition, it means not being able to give him his whole TPN dose, since only portions of the TPN can be given through a regular IV, thus the reason we'll only let him go 2 days without a line. I'm frustrated, but pray this is the end of our run of bad luck. We'll see.
Today we had planned to take Cody and Joshua to Chuck E Cheese for their birthday and have a big wrestling cake and such. I'm glad I ran around and got everything yesterday (just in case) so we could still give the boys their party. I left Sergio for a few hours (first for me!!) and went to the party. LOVED IT. But, my mind was always thinking about Serge and whether he was crying, tangled in his wires, mad, sick, etc. After making a quick trip to the grocery store for Peter and bringing it back to Chuck E's and loaded into his van, I ran back here to find him playing happily in his crib. LOL The kids had a great time and I was so happy I decided to go and spend the time with them.
Happy 15th Birthday Joshua (9/21) and Happy 5th Birthday Cody (9/9). I love you very, very much.
Nettie is back on her feet and feeling well. We are still making her rest her foot so now "exercising" in her room with her walker or taking long walks for a bit longer. Otherwise, she is fine.
The inservice went great at Joshua's school, but in typical Joshua fashion, he had to spice it up a bit and wanted to test the staff immediately. As I was finishing up the inservice, a staff member pops his head in and says "Joshua has had a seizure" (having no idea I'm his mom LOL). I waited for a moment before going to see if he was ok, knowing that if he saw me, he was going to want to go home. But, when I went in, I could see 5 - 6 people standing around him and he was covering his face with his hands and crying due to embarrasment. I asked them to all give him space and took his hands and pulled him to stand. I think the nurse just about keeled over! She had a wheelchair already to wheel him down to her office and had the AED kit standing by. . . oh my, a bit of overkill!! LOL I walked him to his room where he insisted that I take him home. So I walked in with one (Sergio) and walked out with 2. So it is with me. LOL
We increased his Klonopin back to the .5mg in the AM for a week and increased his new med by half a pill. In one week we'll cut the morning dose of Klonopin to .25mg and then a week later try taking away the last .25. We'll see.
Marriela is having a hard time right now. I have to call for a full team meeting and I'm going to request a full time one to one as well as a reduction in her learning environment. She does not have the skills, concentration, ability or desire to be a part of the overall classroom setting. This is making it very hard for the staff to work with her, as well as for her to enjoy her day. . . it's too hard!! I told them this year was going to be difficult and it's once again, proving to be the case. Very frustrating for both her and I to go through all of this again.
Cody is doing awesome and had a great birthday party!
Trayvon had a rough day on Friday. I met him and Cody at the bus. As soon as he got off I knew he was off. We all walked to the library and though he never complained, his face and demeanor said it all. I checked his sats at home and they were 87 but I still insisted he wear his O2 and within a half hour, he was doing so much better. I have been questioning our decision to go forward with transplant and I know God himself, let me see just how right this decision is for Tray. He needs a new heart and I now, no longer question this fact.
Well, need to go get some Dora videos for Sergio since he'll be bed bound for the night now.
Take Care and God Bless,
Renee
Wednesday, September 22, 2010 6:51 PM CDT
Hi everyone!! It's been another busy couple of days.
First, my big accomplishment. . . drum roll please. . . I had my tooth removed after suffering for 2 years due to fear!! I had them put me to sleep, but hey, I did it and now I will finally be able to chew on both sides of my mouth for the first time in just over 2 years. The dentist for me, is like spiders, heights or snakes to others. I start shaking and crying just making the appointment, knowing what that will lead too. When my filling fell out 2 years ago I was told that the previous filling was very close to the nerve and now, to replace the filling they'd hit the nerve. Answer - root canal. . . oh no, I don't think sooooo, not this girl. So I waited, brushed religiously to prevent an abscess (which I never got) and just chewed on the left side of my mouth. However, with Trayvon's transplant hanging over our heads, I realized I needed to take care of this so I didn't run into issues down in NYC with no one to take our insurance. I "manned up" as my sister called it, and went for the referral and then today went to the oral surgeon. I cried, I shook, I cried some more, and then i was zonked and woke up with my tooth gone. YEAH!!
Ok, that's all, I know it sounds so stupid after all that my kids go through, but for me it was terrifying. LOL
Onto the kids. Sergio decided he needed to continue making me work, so he stopped peeing Monday. He had one wet diaper at 5 am and then, nothing. When they cathed him in the ER, he only had 6cc of urine in his bladder. . . hmmm. He had 1200cc of TPN during the night, where did it all go I ask? So for the past 2 days (with a great deal of persuasion by me with the pallative care doc and our ped)I talked them into doing 12 hours of TPN and then 12 hours of hydration AT HOME. We've been doing this for 2 days now and he's nice and hydrated. The ped admitted she was very out of her comfort zone ordering hydration for one of her patients at HOME. LOL I flat out refused to be admitted again, we can do it all at home as long as he's not "sick". He finally went poo after 4 days, but it was liquid bile (sorry TMI I'm sure) and his J-tube finally started slowing down its output yesterday. I have connected him to drainage tonight to see if that moves some of the stool along, but hopefully this is all that he needs the drainage for, for a while. We see GI tomorrow and will discuss several things. Add to this, a line that is starting to get finicky and doesn't always want to give us blood. So we're trying to get on the surgery list ASAP for a new broviac double lumen line. I feel sad in one way that we are moving towards a permanent line, as the PICC always implied "temporary". But, he has proven to us, this is a long term thing and now that we have to run fluids and TPN and probably other things in the future, we need a good permanent line to rely on. We've also decided school is not for him until we're past the big virus season, flu, RSV, roto and H1N1 are all going to peak in a few months. He got his flu shot yesterday, but it won't do a thing against RSV or Roto, both of which almost did him in two years ago. So we'll revisit the school situation in the spring. Sigh. Another sad moment for me. He seems to be getting so much sicker, so much faster and we don't even really know what's wrong with him. I just pray that we can stall they underlying problem sooner than later or. . . I won't go there right now.
Joshua had 3 seizures at Casey's Place yesterday (his afterschool program) but they were brief and described by the nurse as "focal" in nature. Not his drop seizures. That's awesome, and they came the day after we stopped the last dose of Klonopin in the morning. He's no off of the Klonopin completely. I thought that would be it, until tonight. He had just stepped out of the shower, and I heard the shower curtain fall. He had fallen straight back into the tub door breaking off the latch completely this time and was seizing with the plastic shower curtain wrapped around his face. It was all I could do to pull the curtain free from him while I waited out the seizure. He came right to, and was fine afterwards and asked why I had thrown the shower curtain on the floor, grrr. I hate seizures!!!
I'm going to his school tomorrow to teach them when and how to use the Diastat and PRN Ativan. I pray they never have to use it, but it's always better to be safer than sorry.
Tray is doing well. He is looking tired, but is liking school. His sats at school are lower than I would like, but there isn't much I can do about it. He used to be in the low 90's more often than not, and now he's 85 - 87 most of the time, which is one of the reasons he's more tired. My cell phone rang the other day and it was a 212 area code and MY heart stopped. I was thinking. . ."I'm not ready, I'm not ready, oh my I'm not ready!!", but, it was just the social worker checking in on us. I told her she gave me a heart attack and she said she gets told that by all of the parents waiting, that's why she hates calling and likes to use e-mail when she can! LOL
Marriela is almost off of her Abilify and on her Depakote we have one more transition to get her to her full dose of Depakote and then we'll remove her morning dose of Abilify. She is having a hard time in school and I hear their frustrations in the notes they're writing and the calls I'm getting. But, I WARNED them that putting her in with ALL NEW people was going to go bad and there is nothing I can do to alleviate her stress or anxiety and they will have to work through it!! So frustrating! Going to have to call a meeting with her team soon I think.
Cody had football tonight and he scored another touchdown! I asked him how he did and he said "I scored 100 touchdowns and the other team zero. . .I'm not kidding mom, for real, they scored zero." I wonder where that competative spirit comes from!!! NOT ME!! LOL He's liking school more now and has mastered his days of the week already.
Annette was doing awesome, but last night she was doing her workout video in her room and fell. Not once but twice. The first time, she was fine, but the second time, she rolled all of her toes under (her feet are very tight and don't bend like yours and mine, her toes are all curled under with her high tone) so when she fell, she "cracked" all of the upper toe joints. I'm sure nothing is broken as she can bear weight, no bruising, no swelling, but we're not allowing any use of the walker right now. She's mad, but knows it's what she needs. Dang kid has to much determination and will power for her own good!
I thought I should also let you know we've adopted two more kids. Bo and Mazzy came to us via foster care. We were notified of them through a friend and she called to ask if we'd be willing to take in 2 little 4 year olds. You know me, can't say no. They have acclimated beautifully to our home and Mazzy is fond of sleeping under our blankets while Bo likes to sleep on my head. . . yes, they're dogs!! LOL Two pugs who had been given up for adoption 6 months ago. They had to be taken as a pair and were living just around the corner from us! Everyone loves them to pieces and they're an awesome distraction from the sometimes overwhelming stuff that goes on day to day here.
Till next time,
Take Care and God Bless,
Renee
Thrusday, September 16, 2010 12:22 pm CDT
Hello there everyone!!!
Two updates in one week, oh my, I'm on fire!
Had a few moments of down time in the clinic while Joshua gets his IVIG infusion. Got home with Sergio yesterday. He's in full intestinal failure again. We are going to do a contrast scan with a small bowel follow-through to see if we can find a specific area of his GI tract that is not working at all. Apparently, this can happen and it causes all kinds of havoc on the rest of the tract making it non-productive. Sometimes you can go in and surgically remove that specific area and result in a functioning GI tract. He did say that if it's mito that's causing these issues, then the surgery will only provide a temporary relief as his little GI tract is likely to result in more and more areas that become non-functional with each virus he encounters. So for right now, we are on full TPN with nothing going in his tummy at all. He has a drainage bag attached to his J-tube to continually drain out the yuckies and help him not be so bloated. The drainage has already slowed down since Monday, so I think we're going to be ok as long as we leave his belly alone for a while.
I was then asked by Peter if sending him to school was the right move. I, being a teacher at heart, feel YES, it's the right choice. But, the reality is, with each viral infection he catches, the more damage we do to his body and the faster the progression of his underlying disease. That is NOT acceptable. So, in the end, my baby will be housebound for now. Maybe there will be a cure one day to allow him the luxuary of enjoying a school setting, but right now, I don't think it's in the cards.
Just wanted to vent for a bit.
I also wanted to ask for prayers for a close family friend who finds himself in a scary and unfamiliar place with one of his beautiful children. Please pray for comfort for whatever their future holds and for peace in any decisions that need to be made that. May the doctors know, and offer the best treatment options for the situation.
Thank you all!!!
Renee
Tuesday, September 14, 2010 5:27 PM CDT
Hi everyone,
We've been very busy!! First lets start with the great stuff. . . the Benefit was amazing. The love and community support that was shown to our family was truly beyond words. We are very blessed to have so many people know us, love us and support us and our wonderful children. I'm so glad we live here, there really isn't anywhere else I'd want to be. The Benefit was also a wonderful success and my friend Jill did such an amazing job to make it so successful. We can now rest easy that we'll be able to get the place we need to meet Tray's needs post transplant as well as travel expenses and the costs related to Peter not working during that time. Thank you to all who attended, helped, contributed, supported or prayed for us and the benefit. God is good.
With that said, Sergio just did not like the idea that the spot light had been taken off of him and he decided a trip to the hospital for a few days would re-secure his place as top dog in the house. I, on the other hand, don't agree and have a little issue with his ego maniacal ways. Last night he decided to run his first fever, 102.5, and with a central IV line, you have no choice but to take him to the ER for cultures and antibiotics. While there, his J-tube (the one in his intestines) decided it wanted to pour bile out of it, letting us know that his GI tract was working in reverse and feeds were not going to be tolerated for a while. With that factor and the obvious respiratory infection (big cold) they wouldn't let us come home. We're here through tomorrow morning provided the blood work doesn't grow any funky bugs in it. We're going to try and feed him 1/2 strength feeds and 1/2 TPN, but I'm beyond certain that he won't be able to do it and it's going to make things worse, not better. So we'll come home tomorrow in all likely hood back on TPN only for a while and restart the whole process of trying to retrain his GI system how to eat. We know this is going to be a life long process, but I was sooooo hoping to be able to say good bye to the TPN, as this is the one thing we don't have taken care of in my absence. It'll work itself out, it always does.
Tray was sooo happy at the benefit. That day, I also received a call from a mom from our old elementary school, LBE, who gave me a contact for a flight program that transports transplant patients around the country. I called and emailed our info to them and should hear from them tomorrow. This would be such a load off of my mind if we had it all set to go and there were no "glitches" to have to make back up plans for all the time! So pray this is our answer!
Joshua is doing awesome! I won't say what he hasn't had so he won't have one. LOL He's liking school so far.
Annette is soooo busy! Between school, Casey's Place and her worker, she is on the go the time!! We were offered an awesome gift from a family friend who is going to do her senior pictures for her. Now we can also order her the class ring she has wanted at the same time as the other kids are ordering. Thank you Julie!
Marriela is trying. She has fallen asleep in school everyday thus far so we'll see what comes of that. We had our meeting with the psychiatrist and she agreed with the concerning tongue and mouth movements Marriela is doing. We are now weaning her off of the Abilify and onto Depakote (it works as a mood stabilizer as well). In the interm she's getting a boat load of meds, so I'd be sleepy too. LOL She is enjoying her afterschool program and it's been nice knowing she's having fun and safe without having to worry about her being so agitated and frustrated with being home and "bored". Hoping this continues to be a good program for her!
Cody has been battling some asthma flares due to a cold (probably the same one that started most of Sergio's issues). Today he came home from school and told Peter that he doesn't like school anymore. "All they do is boring centers stuff." LOL Oh no, it's only day 4 of his kindergarten year and he's already bored!!! It's going to be a long 13 years of school baby boy if that's the case!
Well, that's all of them for now. I need to address poor Sergio's tummy. It's getting bigger by the minute and he's leaking yuck out of his tubes now. Little bugger!
Take Care and God bless,
Renee
Thursday, September 9, 2010 8:13 PM CDT
Today is my Cody Bear's 5th birthday!! I can't believe that 5 years ago I lay there in a hospital bed, frustrated that I had yet to see my baby since he was in the NICU for a bit and then they said he couldn't stay warm. I had had a c-section and was in agony but felt that if I could just see my baby I'd feel so much better. . . I was right. He was born at 12:00 noon and I finally got to hold him at 3:00 in the morning. It was so wonderful. What an awesome surprise for us!! Happy Birthday my sweet baby boy, we love you Cody Bear!!
We continue to make plans, jump each time the phone rings and move on with daily life. We're making progress with the care for the kids when the call comes. There continue to be road blocks to the actual ride down to NYC when we get the call, so it's looking more and more like Peter and i will have to drive him ourselves. There are some factors that make this dangerous but, we don't seem to have an option. Ambulance companies can't commit, since there is no guarantee they will have a rig available or that they will have a team available in the time frame we need to be there. Therefore, we'll plan on driving.
Today was the first day of school for everyone but Sergio. Trayvon, Marriela and Cody all ride on the same bus and now meet the bus at a "bus stop" vs. outside our front door. We'll see how this goes as Marriela has to make it to a bus stop on time! LOL Everyone had a good time they say and we were in and out of the elementary school several times today for various things and they were all happy!
The only real glitch we ran into was Annette's bus was 2 hours late!! They have decided to dismiss the kids from the OCM BOCES program at almost 3:00pm which is 45 minutes later than the regular high school dismisses!! Who does that and doesn't tell the parents!!
Other than that it was a good day.
Sergio went to his school with Stacey and I to meet his new team of teachers and therapists. I have a good feeling about this school year. I emphasized the fact that communication HAS to be a priority for all involved, not just speech. He NEEDS to be able to communicate his needs and this will take the whole team being on board, not just one therapist. They all agreed! Health wise, he's doing ok. His belly is very distended since switching to full feeds, but we're waiting it out a bit to see if he can acclimate to this schedule. I don't want to go back to TPN if I don't have to, so we'll wait a bit longer. He's also having lower sats when he's sleeping so we're keeping a close eye on his respiratory status. He saw the low vision specialist today as well and he was the perfect patient! We ordered him some very dweeby looking glasses lol. We'll see if totally rubber glasses can hold up to Sergio's desire to destroy them!
Annette likewise has chosen her new glasses and we're getting them for her this weekend. She had her hair braided by a lovely young lady last night that did it "just for fun" (we did tip her though!) and she did a great job. She looks so grown up now with her earrings and big hair!
Marriela is officially all signed up for her afterschool program at Childtime Learning Center. I took her yesterday to drop off some paperwork and she was very excited and couldn't wait to go. I hope this helps with that afternoon "down time" she struggles with so much. She had a great day at school though.
Joshua started the day off with a bang, he decided his first day on the new school bus would be a great day to have a seizure. Peter noticed the tell tale posturing as they were pulling away so they stopped, pulled to the side of the road, waited it out and then were off on their way again as he smiled and blew rasberries at us. LOL I have a meeting with his school nurse on Monday to go over the seizure protocol. He's almost done with the transition from his old med to his new med and though he's still seizing, they are shorter and seem to be less intense. Hopefully once we're up to full dose, they'll come less and less often.
Trayvon is doing well. He did a fantastic job on an interview with the Channel 9 news. You would have thought he was a natural! It should air on the Ch 9 news at 6:00pm tomorrow night.
The Benefit is this Saturday and we're constantly amazed and humbled at the amazing outreach and support we're receiving. THANK YOU, THANK YOU!!!! We love each and every one of you!
Take Care and God Bless,
Renee
Friday, September 3, 2010 9:03 PM CDT
The wait has begun... Our lives are now at the mercy of a phone call. Tray was listed yesterday. He is currently listed as Status 2, which means he's stable enough to wait at home. We have yet to solidify our transport plans when the call comes and honestly, if it comes right now, we'll have to pack up all the kids and go down as a family. Obviously there are some major drawbacks to that plan, namely we'd have to find a hotel that can accommodate all of us, and then the logistics of traveling between the hotel and hospital while keeping the other kids busy and cared for, would be extremely difficult.
We met the director of the local ambulance company and he's trying to work out something for us. The logistics and red tape is so overwhelming at times. I know that God will find us a way. I refuse to allow this factor stress me, as I have too many other things to stress me. LOL
We are still working on the "care Plan" for the other kids when Peter and I are down in NYC. We have decided that Peter will be gone no longer than 5 days, no matter what. But, with lots of prayers, this will hopefully all that we'll need to have Trayvon stable and doing well before Peter has to return home to the kids. In the interm we're praying that people will be able to help us out by coming in to do some shifts in the morning, evening, and overnight. Again, I know this will all work itself, I just hope it does before the call comes! LOL
Joshua is doing well with his change over to the new medication. He did have three seizures in a row yesterday which is the day after we decreased his Klonopin, the same thing happened last week. Overall though he's doing very well.
Annette went to the orthotics specialist to have her shoes looked at and to order new ones with a new lift. She chose some beautiful glasses but they were almost $500 total for the lenses and frames!!!! When did glasses get sooooo expensive! We're still shopping obviously. LOL I need to get her senior pictures done soon. So much to do before the call comes. . . sigh.
Marriela had to come down on her Strattera dose and seems to do much better on the 10mg than the 18mg. The higher dose made her highly irritable. I noticed some alarming tongue movements the other night and realized she does it all the time. Repeated movements of the tongue and face can be a sign of tardive dyskinesia, a serious side effect of some antipsychotic medications. I stopped her Abilify immediately. This is the one med that could cause that. I have to call her doctor on Tuesday to let her know, and to get her to start Marriela on another mood stabilizer. She NEEDS it!!! Definitely notice a much more "manic" air about her and sleep is elusive once again. But, that will settle down once we get her on something.
Cody is doing very well as usual other than he and Marriela being at each others throats ALL DAY LONG!!! OMG!! Never seen anything like it. As soon as either one enters the room with the other in it, a war starts almost immediately. He says something to her, she says something to him, and the cycle begins.
Sergio is doing well. Tonight is his first night without TPN!!! We are now on full feeds via his J-tube. His labs have also improved since adding the iron to his feeds at night. He went from a Hgb of 8.4 (anything below 8 is transfusion level) to 8.8. I'm hoping that by Monday's labs he'll be over 9 and we can rest easy that this is easy to fix with the iron. We also took him to orthotics person and despite getting him up at 4:30am and giving him clonodin and benedryl he fought us tooth and nail when we made the casts for his braces. He's one tough little bugger!!!!
So the preparations continue. We are all very excited about the benefit on the 11th. We told Trayvon that it's sort of a big party for him to cheer him on for his transplant! He's thrilled! A report from the Star Review was here as well and he was smiling from ear to ear to be the center of attention. LOL Peter called an old friend who teaches Kung Fu school to do a demonstration and to make Tray and honorary member of the school. They readily agreed, so they'll be at the benefit to do a demonstration as well. They have also received some amazing items for auction! A signed Penn State jersey, a signed basketball by Jim Boeheim and a Black Hawks jersey signed by a player who was in the Stanely Cup! It's going to be a fun night for everyone.
Take Care and God Bless!
Renee
Tuesday, August 24, 2010 7:28 PM CDT
Any one need fire wood?? We have two downed trees in our back yard needing new homes. What a mess. We had someone come out and give an estimate for the removal of said trees, agreed to the estimate, but somewhere it was lost in the translation as to when said trees would actually be departing our backyard. So 3 days later, we are still unable to use the back door, as there is a very large branch literally wedged up against it. Oh the excitment!
Trayvon is now using some O2 in the morning due to low sats. He has a cold and it is lingering in his chest and causing excessive coughing each morning. It also has caused him to vomit almost every morning as well. It was almost a year ago he got into the same cycle necessitating the need for the O2 concentrator at school. I pray hard that this isn't the case for this school year as well, as he will be very, very unhappy about it. On the up side, he'll be more inclined to see the benefits of the transplant! LOL I did have several conversations with NYC and the transportation plans are evolving and solidifying. It seems so simple to me, but the more people who need to be involved the more complicated it will inevitably get. Sigh. Thinking tomorrow is the big day though, LIST DAY. But, that's not in stone, but I'm thinking that it will happen, as most of the leg work had been done today.
Joshua had his IVIG infusion today. It went like clock work and no port troubles at all. He had his first seizure in a week yesterday so that was a wonderful improvement over daily ones. He goes up again on his new med tomorrow so I am praying that he continues to do well and we'll start to spread out the seizures even further!
Annette went for a. . . drum roll here. . .3 mile walk with her new worker and her walker! I won't even go for a 3 mile walk! Egads where did her energy and determination come from? Nettie had a great time at camp as well and loved traveling on the train. She was 2 hours late getting in though and I understand that this is a very common issue with Amtrack. I was not happy, as I had a friend there waiting with her wheelchair van to bring home her powerchair. Craziness. But, all is well now and we're all home under one roof again.
Sergio has thrown us yet another little curve ball. This Monday's labs show him to now be quite anemic. Just a few points above needing a transfusion. We are assuming based on the numbers, he is iron deficient, which I find difficult to understand since he is already on TPN and formula which has all the iron his body should need. But, we are going to add iron to his meds 3 times a day in his J-tube to see if the numbers start to slowly come up. We had some more labs drawn today to see how quickly things are going down (or better yet, going up) and his total iron levels in his blood. He continues to have a cold with coughing, but otherwise is a very happy little guy who totally tolerated his mommy giving him his very first hair cut!! He looks so adorable and SO OLD now!! He looks 4 but in an 18 month old body. LOL To cute. Tomorrow he goes to see the endocrinologist to monitor his steroid dose and growth. Then on Thursday we go to get fitted for his new braces for his feet. Fun times for all.
Marriela has had 2 days of playdates and now Peter and I are staring at each other wondering what in the world are we going to do with her for another 14 days until school starts. I will truly go insane if we don't find something for this child to participate in! I'm calling the YMCA tomorrow to see what they have. I'm also taking her to the doctor on Friday to see about all of her stomach pains. I'm sure most of it is psychosomatic and almost always occurs when she's upset, but we need to know for sure. I also need a new script for her prevacid so she needed to go anyways.
Cody is so excited to start football. He's very irritated that the trees are blocking his backyard, since that is where we practice football! I still haven't heard anything on who he has for kindergarten yet. Just another phone call to make tomorrow. LOL
Well, that's all of them for now.
Please check out the Benefit our wonderful friends and family are doing for Trayvon:
http://www.facebook.com/renee.curkendall?v=app_2344061033#!/pages/Benefit-For-Trayvon-Curkendall/143197725705852
Take Care and God Bless,
Renee
Sunday, August 22, 2010 2:37 PM CDT
Enjoying the monsoon going on right now? LOL
Poor Nettie is away at camp and I'm sure it's pouring there as well. She did have a good day yesterday but today and tomorrow are suppose to be like this, rain, rain, rain. She should arrive home tomorrow via train around 3:30pm. The ride we were going to use for getting her power chair down to the train station, had a smashed windshield, thus unavailable. I looked up the nearest Centro bus and it was only one block from here. So Nettie and I left at 8:00 and took our very first bus ride downtown. It went wonderful and we arrived just a few moments past the posted arrival time. She and I waited with daddy who arrived about 15 minutes later with our luggage until she departed at 10:30 am. I cried as I walked away, because she traveled alone with just two other boys her age (non-disabled) going to the same camp. It had thought there was an adult going but was wrong. I never received a phone saying she wasn't at the station when the camp arrived so I am assuming she made it fine. LOL My baby is growing up!
Joshua has started his new medication and thus far, is only on the very first level of drug (it's going to take 35 days to wean him up) but he hasn't had one seizure since the day we started (last Wed.) and he had been having them daily. He's doing well in all other areas as well. We go for IVIG all day on Tuesday. Hoping our port issues are all done and it will be smooth sailing.
Tray is home from camp. He is tired, and has a sore throat but overall, he looked good. Heard from both Dr. Cherrick and the transplant team. They feel good about working with each other I was told that I will hear from them this week to give us our listing date and the plan they have chose for us to be transported to NYC once the call comes. I have been busy preparing a special "bag" for the call. I need to have stuff ready to grab immediately, so it has to have enough clothes for about a week, make-up (oh yes, this is a must), toiletries, etc.. But, since I can't go and use anything in the bag (rendering it useless when I need to fast) I need to get stuff that I don't have already to put in it. I wish I could say my wardrobe is large enough to put stuff in a bag and forget about it without it impacting my daily dressing habits, but alas, I'd be flat out lying LOL. Other than that, we've been humbled by the response of our friends and family regarding our benefit. Word has traveled far and wide and I am truly grateful for all of the support and prayers we've received.
Marriela is doing well on her increased dose of Strattera! I notice definite changes in her after she takes a brief morning nap. I'm hoping that as she gets used to the dose, she won't feel that tired in the AM. She went to the store with me, has been home while the kids went to see a movie with Peter and we've finished a lot of her hair!! That's a huge accomplishment for her. So I am hopeful that the next few weeks won't be as bad as we had thought if she responds well to this med.
Cody is awesome! He is just such a boy and LOVES being active all the time. He climbs virtually anything and has been preparing for his newest sports endevour, football!
Sergio is getting sick it appears. He's coughing and today he has been very, very cranky. It could just be that he's irritated he can't go out due to all of the rain, but it seems more than that. His night nurse said he was up most of the night with a stuffy nose which caused him to cough a lot. The good news is, he's up to 3/4 strength formula feeds in his feeding tube and is down to only 1/4 feeds via TPN!! WooHoo. This means that in one week we should be off of TPN all together. I'm so hopeful that this will last long term, as it will make the whole going away with Trayvon so much easier on everyone!!
Well, that's all of them. Need to finish Marriela's hair and the laundry before the rest return home.
Thank you for the prayers and support!!
Renee
Wednesday, August 18, 2010 6:14 PM CDT
Frustration. . . word of the day.
Frustrated that I had to pull Joshua from a wonderful opportunity to go and have fun with other kids, because he's back to seizing daily, sometimes 2 and 3 back to back. Yesterday he had one while swinging at the park and having a blast. Face first into the the dirt and then when he came out of it, he was screaming his hand hurt.
As we were getting everything loaded into the van to get Joshua home (thinking maybe he broke his hand again) Marriela loses it! I mean she loses it, as she doesn't do well with transition let alone rapid transition.
In the end, his hand was fine and after getting Marriela into a nice soothing warm shower, she too, settled down and went to bed. We started his new med tonight but with a much slower Klonopin wean than we had done previously. Hopefully the slower wean will help prevent the breakthrough seizures that cause so many problems every time we try to change meds.
Today I went to a much anticipated appointment at the Neuromuscular Disorder Clinic in Rochester for Sergio. Well, I spent an hour with the clinic fellow going over his paperwork and such. She goes out and consults with the attending doctor. Eventually they both come in, and the doctor sits down and within 1 minute dismisses what 3 other doctors have diagnosed. She said since the muscle biopsy was essentially negative, it would be highly improbable that he has a mitochondrial disorder and she has no further need to see him. He probably has some rare syndrome that we may not be able to identify in his lifetime. Excuse me, but how long is that life time. . . can you tell me what is wrong with my child! How can you assess him in less than 1 minute despite a plethora of information suggesting the opposite of what she is saying. She felt that everything wrong with Sergio could be explained by one reason or another (steroids, prematurity, adrenal insufficiency, hypothalmus malformation, etc etc.). The only thing she couldn't explain was the GI failure which is classic mito. But, alas, we left with no answers and no return appointment. A "thank you for coming, but we can't help you either, good luck, you probably won't ever figure out what's wrong and learn to live with that". If I thought for a moment that not knowing was ok, and sometimes it very much is, I'd be fine. But, with Sergio, I don't know what organ will fail next. We lost his GI tract, we have serious complications with his brain and lungs. What's next. What's going to be the one thing that takes him? I feel like I owe it to Sergio to find out, if I can, what's destroying his body.
On a good note, I've talked with the camp daily about Trayvon and they said he's having an absolute blast. He's quite the ladies man (oh and is he! LOL), has the kindest soul and sweetest disposition. They are so right on all of those accounts. His health is ok, not great, but not worthy of coming home early, so that's good enough for me right now. I should be hearing from the Transplant Clinic this Friday or Monday to discuss his actual list date and transport plans. I feel like we're stepping off a cliff, not knowing if we'll land on something soft or something that's going to kill us. It's a very frustrating place to be.
Nettie is doing well. She has a cold right now, but she is tough! LOL She is all set to go to camp this weekend. They are taking the TRAIN out! How cool is that? She is all excited. They will take the train to Albany, where the camp will pick them up in a wheelchair van (Nettie is going in her powerchair) and take them to camp.
Cody had his last OT session today. It was sad, she was such a great therapist to both Sergio and Cody. Sergio only as 2 more therapy sessions and then he is done for the summer until he starts preschool!
Marriela is loving her camp this week. She's been going from 9-6p and doing fantastic. We keep her busy as best we can until her meds kick in and then we move to bed. I don't know what we're going to do these next couple of weeks when there's nothing going on for her! UGH. We'll have to get creative with all of them. It's hard to take her somewhere high activity and then also have to watch Joshua due to his seizures and then watch Tray to be sure he's doing ok. The three make any outing very interesting. LOL She seems to be tolerating her Strattera very well and in a few days we will move to the higher dose. Hopefully we'll really start to see some benefits.
Well, that's it for today.
Take Care and God Bless,
Renee
Saturday, August 14, 2010 2:51 PM CDT
Hello everyone!
Summer continues to be hot! LOL I know, I know, we'll all be complaining about how "cold" it is in just a few short months.
Some wonderful friends have organized a fundraiser for Trayvon. I would like to share the information for you:
September 11, 2010
6 - 8:30pm
Cafe at 407
407 Tulip St Liverpool, NY 13088
It's $10 individual and $30.00 per family.
There is going to be music, coffee and finger desserts. They will be raffling off upscale desserts and items from local retailers and bakeries.
I am humbled and honored to be friends with some amazing people in my life. I have several "groups" of mom's that I hang out with and each mom is special, unique and amazing in their own right. Some have kids with cancer, some have kids with heart defects, some are moms of kids with disabilities, some are moms from our church and some are just amazing moms that I've met through other amazing moms. Behind many of these moms are the dads and kids that make up the families I know. I am truly blessed.
We took the kids to see the NY Jets training camp in Cortland yesterday. Peter and I thought the boys would like to see the players up close and in person, but they had a lot more fun doing the blow up events LOL. While there, Joshua had a seizure in the bleachers and was laying in the laps of two gentlemen who thought he was falling so they were trying to push him up. He spilled his Powerade all over himself so we had to buy him a t-shirt. Well, that lead to the need to buy them all t-shirts. LOL Tray is having a very hard time with this heat. He is getting dizzy (but won’t admit it, you can see it in the way he walks though), needs O2 and has had to use the wheelchair much more often. He looks “off” a lot of the time now. I had made an appointment for his cardiology workup for October but now I’m going to push is up as quickly as I can. I am wondering if we’ve crossed the point of no return and he’s in need of the IV medication support. If he requires this, then 1. He’s failing faster than before, 2. He’ll be moved up on the status list to a 1B and 3. Our wait will be much quicker. The question becomes, does he get the heart faster than he fails. It may all just be the heat, it may be that camp took far too much out of him, it may be that he’s trying to do more than he did during the winter months. . . but I don’t think so. I WANT to be proven wrong by the cardiologist. I honestly have no idea how we’re going to manage this situation. Peter NEEDS to be there immediately after surgery. He needs to be with his son, we both do. However, the nature of the other kids needs are such that I just don’t know who or how we can manage to allow both of us to be by Trayvon’s side. It is the one that’s causing me the greatest stress. Marriela is a hand full, who can we call upon to tackle such a task. Joshua is “easy” but needs constant supervision and be diligent about watching where he’s sitting as well as making him wear his helmet. Annette is self-sufficient in most respects, but needs comforting and support. She needs to hear that all is ok and she needs help getting her meals, confirming her rides and all around just basic monitoring. Cody, well, he’s the one we worry about the least, but also the one that tends to fall through the cracks. Sergio has his nursing and has only 4 hours a day where he needs someone to watch him. He’s easy for the most part. As you can see, this is a daunting task. Peter and I are putting our heads together to try and build some ideas into actual plans. We’ll see how it goes.
The boys were playing in the pool a while ago and Peter thought Joshua was doing the deadman’s float. Something didn’t feel right so Peter flipped him over and he was seizing. He pulled him to the side where I held his head. He coughed several times but had another one right afterwards. Then he went back to playing in the pool. . . with his life jacket on. That was his first seizure in the pool (or swimming at all for that matter) and he just had one yesterday. It’s also the second time in a week that he had two back to back. We have decided it’s time to change the meds now. He had been doing good but this is getting more difficult so we’ll start next week after his trips with Project Explore.
Marriela continues to struggle with the lack of constant activity. She needs something to do ALL the time, I am not over exaggerating either. When she’s not fully engaged in something, she’s angry, demanding, crying or raging over something. She has camp all week next week 8 – 6 so that will be good for her (and me LOL).
Sergio had his braces adjusted. He’s still toe walking, thus we’ll have to move to the higher braces. It’s ok, he’ll do well and he’s very happy, so I’ll take it. I was frustrated, as they gave me a “meet the teacher” time of 1:00 on the 10th . Well, that is the day I’m at Upstate all day with Joshua so there is no way I can make it. The next day Sergio has to be in Rochester all day for his neuromuscular clinic appointment. That was the only other day teachers are going to meet the kids. I’m not ok with that. The teacher is new to the school, she has no knowledge of Sergio and for all I know, has no knowledge of special needs in general (could be right out of college). I can’t in good faith, send Sergio and his nurse, Stacey off to this school without them knowing about him and his unique needs. So I left a message with the director of the program and will wait to see if they can accommodate me.
Annette has met with her worker and has made a very nice schedule of activities for the rest of the summer. We’ve also received bills of sale for her new walker, and are waiting on the one for her new sneakers. She and her worker are going to go and pick out some new glasses and she should be set from that perspective. She loves her new worker and I love her too.
Cody is doing great. He’s one huge scab since he never stops moving and is always falling or tripping while going 100 mph on concrete! But, he’s loving summer and enjoying his time of freedom before school starts. His birthday is on the first day of school (just like last year UGH). I have to figure out when we’re having his party and who we’ll invite since he’ll just have met the kids in his class just 2 days before the weekend! LOL
Well, that’s all for now. Marriela is very agitated right now and has me stressed completely out.
Take Care and God Bless,
Renee
Tuesday, August 10, 2010 8:12 PM CDT
I hate having "tired" be a feeling that I live with all the time now, but it is. I'm tired. Marriela and sleep are not a match made in heaven, and Sergio has decided he's going to join the party and not fall asleep until. . . well he's still up right now.
Since last update, we've moved the puppy to a wonderful home with a gentleman who lost his dog recently due to a car. He was so sweet and kind to Rocky and Rocky took right to him. It was a beautiful match.
Marriela has started a new med, Strattara. It is approved for both ADHD as well as generalized anxiety disorder. Well, both of those are HUGE issues for Marriela so we're hoping we'll see a nice response. It takes as long as 14 days to build up enough of a dose to assess it's effectiveness, so we won't know for a bit.
She and Cody have been attending Camp Good Days Jr. for the week. They are both having a great time. Tray is away at the sibling overnight camp. It was a nightmare actually having him being able to attend, as the camp lost his paperwork and only knew the paperwork was missing, because I called to talk to them about his O2 at night. Then they tried to say he couldn't come. We finally agreed that I'd fill out the application and resend it all within the hour to the camp, but when I went to fax it to them, THEIR fax machine was broken. No one was available at the main office in Rochester, as it seems they ALL go on the Jr. Good Days camp out there the same week. We finally had to fax it all to the Rochester office and then have a secretary drive it to the camp. CRAZY and frustrating.
Then I get an email telling me that there is paperwork missing from Trayvon's Hope with Heart application as well. Are you kidding me!! I took care of all of this back in APRIL.
Then I get a call that the transportation company won't pick Joshua up anymore until some documents are sent to the dispatcher's office. Huh?? Call Medicaid to see what they are talking about and find out that his service plan was 3 months overdue and they forgot to call his caseworker. . . so they cancelled his trips to the respite program. That makes sense.
So today, while sitting at the clinic with Joshua to get his IVIG, I have to call all over to get the papers, documents, physicals and what not sent to all of their appropriate locations. I'm happy to say, all is well on that end.
While Joshua was getting his IVIG, Sergio met us there with his nurse and for his pulmonology appointment and blood work. His pulmonary appointment was great but he's up almost 3 pounds in 2 weeks. This is the steroids causing him to become cushnoid again. But, we lowered his pulmicort back to the 0.5 percent again and tonight he starts on quarter strength formula!! We lowered his TPN by 25 percent as well and if all goes well, we'll go to half strength formula in 5 days and then 3/4 strength and then full strength (decreasing the TPN at the same time). With a little luck and a lot of prayers, we may be off of TPN in about a months time!! He's going to get his foot braces adjusted this week and if the adjustments work, we'll get new ones made. If they don't then we have to have higher more supportive ones made so he can't walk on his tip toes.
Cody did awesome at Vacation Bible School. He was in the kindergarten class since they had too many preschoolers and he was almost 5 (that's beyond comprehension to me) and he is starting kindergarten in a few weeks! He did such a good job and even learned how to play and instrument in a song. He is such a social butterfly and so independent, such a joy to see and watch!
Joshua is doing well. The other day he had Marriela's new "twinkle toes" sneakers on his hands and putting them in front of his face. Now these sneakers have some unbelievably bright lights that blink all over them (I'm sure they will not fly with the school but they can tape the dang things as I am NOT buying new ones!). I had warned him, jokingly, that they'll probably cause a seizure they're so bright, well, as he was standing there, he went face first to the floor with twinkle toes smashed to his face. Once I got him up and move him to the couch, he had another one. Needless to say, the twinkle toes are put away for now. His infusion went great today, but we had a problem at the end. After the infusion ended, the nurse put him on KVO for just a few moments while she gathered the supplies, well, in that time, he clotted off his port. The tried to reaccess him, nothing, so we did the TPA infusion. Thank goodness that worked and he was good to go, but we didn't get home until 4:00 (got there at 8:30).
Tray I pray is doing well. We took all of the kids (except Sergio) to the Renessiance Faire on Sunday. About 2 hours into our day, Tray was looking really ragged and just not well. We made him go in the wheelchair with some O2 and he spunked up quite a bit after about an hour. He cried because he was embarrassed, but Joshua helped comfort him and we took him off the beaten path and that seemed to help him. I've seen him looking worse as time has gone on. It's scary and reassuring that we're making the right choice to move forward with transplant now. He was so happy about camp so I hope he's feeling well and enjoying himself.
Annette had a great week at her College for Living program. However, on Thursday night we got a text saying she missed all of the noise of our house and the dorm was too quiet!! LOL We went and saw her graduation and the kids loved cheering her on. Even Sergio clapped and said Yeah (though not at the right times lol). She continues with her hour long walks every morning before she goes to Casey's Place. She is also making plans with her new worker and is all excited to start getting out there and learning some new things at the BOCES classes. She wants to take a Zumba class as well as a scrapbooking and cooking class. This girl ALWAYS on the go! She's looks and feels great. We're getting her a new walker for school and she needs new glasses and her special sneakers. We're getting there.
Well, that's all of them. Going to bed now. Sergio is finally asleep!
Take Care and God Bless,
Renee
Tuesday, August 3, 2010 7:20 PM CDT
Still need sleep. Tonight has been absolutely crazy!
The puppy isn't working out. Marriela is terrified of him half of the time and the other half she is trying to drag him out of the house on the leash. The other kids are afraid as he has bitten them several times with those razor sharp puppy teeth and he requires A Lot of time walking. Peter is talking to someone now who sounds like a good fit for him.
Marriela has had several very difficult days. We started video taping her to show the doctor. I'm going to see if we can get into see her new doctor and it's time to try some new meds. She did go to the dentist and though it took a lot of talking down, she was able to finish getting 4 sealants on her back teeth. Glad that's over!! LOL
Tray is doing well but has been wiped out by the heat. He looks puffy and tired. Overall though, he's doing ok. I talked with the transplant coordinator to find out some more specifics regarding the day of listing. It's looking like the 23rd is the day. Sigh.
While Marriela was in the middle of her tirad, Joshua has a big seizure. First one in over a week and he was sitting, but just added that much more craziness to the night. Joshua also saw his endocrinologist today and though we had thought it would be his last visit, we were wrong. His growth velocity was far below where he thought he should be so now we have labs to do, x-rays to do and a bone density scheduled for December to check on his osteoporosis. He also went to the dentist which was perfect!
Sergio had to have his helmet put back on tonight for the first time because he kept smacking himself silly when he couldn't go outside in a torrential downpour.
Nettie is still away at her program and doesn't know yet about the dog. She's going to be very sorry when she finds out.
I swear there was a full moon tonight in our house!!!
Well, need to go downstairs and wait for the lady who will probably be Rocky's new mom. At least we may get some sleep now!!
Till next time.
Renee
Sunday, August 1, 2010 8:31 PM CDT
Hi.
Today I'm feeling a bit overwhelmed with life. Our family takes up so much incredible time to take care of I find myself loosing brain cells at mind boggling rate. Most of the time, I don't feel like we're that much different than other families, minus the medical stuff. The kids go to camps, summer school, summer activities, family fun and trips and so on and so on. Mixed in there, are the meds, the organization of rides, transportation companies, applications for so many things, calls to doctors, braces, IV's etc, etc. Again, this is all a very normal thing for us, so it doesn't seem overwhelming most of the time. . . and then there are days like today.
At 1:00 I walked up the steps to the Zen Center to attend the memorial service for an incredible young man named Andrew and to offer his mom and dad support. I was looking forward to seeing my friend Lisa and telling her how much Andrew affected me and how much I really loved that I had the opportunity to know him as often as I did. But, as I was walking up the steps, I knew I had messed up. I knew I was wrong and the tears fell for Andrew, Lisa and out of anger for my inability to even make it to an event so precious as this. I don't know how I messed up. But I did. Lisa, if you're reading this, please know that I am so very sorry that I missed you. I am truly sorry.
I've also been finding myself going to places in my mind that I rarely allow myself to go. With the recent deaths of two children of two close friends, I can't help but know and process that one day that may be me standing in their place. I don't know which of my children it will be first. It is our reality that we have 3 children with life threatening illnesses and I can't predict the course of any of them. I find myself questioning our choices for all of them all the time now. I worry that maybe going to transplant with Tray we are moving the time line up expotentially. I don't have any particular reason for that fear, it's just sitting there, in my mind and plays on my dreams. I worry that by not going straight to surgery for Joshua and trying this med first, we're going to give the seizures a chance to find a way to take him. Again, no reason to think like this. I don't even talk to Peter about it. It's just not the way we allow each other to think. But, my mind has it's own agenda.
Overall, I'm just tired and it's amazing how sleep deprivation can make you so much more prone to negative thoughts. I know that my friends' children are both completely unrelated to my children and there is no reason to put the two together. I know that, and once I get some sleep, I'll be able to put these thoughts out of my mind again with ease. But, I think it's probably ok to have these thoughts once in a while too, to keep me grounded. Maybe it's God's little way of saying, don't get complacent. Things can change in a heartbeat and I need to be aware. Who knows.
The kids are doing well. Marriela is a full time job but overall, doing better than we anticipated. I don't know if we've lowered our expectations or if things were so much worse before that this seems good. Again, who knows. But, she is doing well at camp and in school and we deal with home the best we can by keeping her busy as much as possible. Annette is away this week at OCC for her College for Living program. She is excited, as she saw quite a few "younger" students this summer and was happy to make some new friends. Tray announced he wanted to do everything he could to make it so he didn't need a transplant (including eating Cheerios because the commercial said it was "heart healthy"). So I had to break the news to him that it was an inevitable event and then we talked about focusing on the future and the benefits of the transplant vs. the scary process of the transplant itself. We cried a bit together and then he left to play ball with his brother. This is going to be very hard on him.
Well, That's it for today. I'll update later this week with a kid oriented one, just feeling down today and wanted to share. Thanks.
Renee
Tuesday, July 27, 2010 3:07 PM CDT
Hi everyone again!
Summer continues to be busy and fun.
Joshua is now going to Casey's Place for the next 3 weeks. They did call today to let us know he had a seizure, but he was sitting down and so nothing came of it. That was his first seizure in one week, that's AWESOME!! We also got a call from his program called Project Help and they offered him a 2 week slot for August because he was such a great kid to have in the program! Unfortunately, I had already committed him to Casey's Place and he likes it there as well, so he'll just do 2 more days of Project Explore the 3rd week of August. But, next summer, they said he can do both months for Project Explore! Awesome.
Marriela is in her daycamp this week. We paid for the extended care plan and she stays now until 5:30pm and LOVES it. When she gets home, it's dinner time and then bed time and she's tired and ready for a good night's sleep. She loves the camp and is much happier in the daily structure and constant activity that they offer than she is at home with minimal structure and less activity. I'm so happy we decided to do this. She also met with her new psychiatrist who felt that Marriela is a profoundly complicated case and will need lots of monitoring and support throughout life. I was happy she saw that right away, as we had already been prepared that this doctor does NOT like kids to be on things like the Zyprexa, as it she felt it is much to strong for little kids. Well, I showed her a video of Marriela on a day we used the Zyprexa and she happily wrote another script to refill it. LOL
Tray is doing well. He is doing summer school for this week and the next 2 weeks and then he goes to Camp Good Days and Special Times and then the following week he is going to Hope with Heart. He's so happy to go to camp!! Then he will come back and onto the list he will go. We had a very nice talk about it and he's ready for his new heart. I don't think he realizes all that is involved, but he's excited for the ride to NYC and to be able to do karate. I'm leaving it at that.
Annette is doing Casey's Place every day and having a good time. She goes for an hour long walk every day!! It's hard for me to believe that she is going to be 21 soon! We are beginning to explore housing options for her for after high school. I really like ones called Grenedier Village. We have a meeting with her caseworkers this Wednesday and we'll start the discussions on how to access these services.
Sergio is doing well. We have weaned his steroids down by 1/3 because he is beginning to get cushnoid again. His cheeks are sooo big now! If we allow him to get too big, he'll have many more problems to contend with. He seems to be tolerating the wean for the most part. He's had several days of increased respiratory rates and heart rates, but overall, he seems to be very stable and happy. He's also doing well with tolerating his feed increases. He is now upto 54cc/hr for 12 hours a night of pedialyte!! Once we get to 80 cc/hr, then we'll start adding small amounts of formula to see how he does. Overall, no complaints!
Cody is doing great. He is very, very active and loves to express himself verbally. Peter and I not use to a developmentally normal child! So when he figures things out or does something on the playground that the others have yet to even try let alone master, we're always shocked.
Well, that's all of them.
I did also want to share that we have some amazing friends that have organized a fund raiser for our family. I will post the details in the next update, but please keep the evening of September 11th open for some fun and great food!
Love,
Renee
Tuesday, July 20, 2010 7:17 AM CDT
Hellooooooooo,
I know, it's been a while. Summer is here, keeping busy and trying to get everyone where they are suppose to be at any given moment (and let me tell you, that's a lot of places!).
Last week Joshua had a great time at his camp (Hole in the Woods) and we were shocked to hear he did not have a single solitary seizure while he was there!! When he got home we thought we would try to change him over to his new medicine we get from Canada now. However, after 4 seizures in less than 5 hours, we realized the transition will be a very long and slow one which we will start once all of his summer activities are done. I have high hopes for this drug, as it has proven in over 85�f the cases to reduce drop seizures and in 15 percent totally stopped for up to 13 months (this is where the study is now)!! I pray he is in that 15 percent!!
Tray and Marriela had a great time at the Lysander Day Camp last week. Marriela is going to go for 2 more weeks and we're considering allowing Tray to do one more week. It's very hot this summer and they are not in an air conditioned situation and he is looking haggard when he gets home, but he LOVES it. We'll see. Overall, they are doing well. Marriela is currently stuggling with some asthma and constipation. She is getting lots of nebs with only moderate relief and today we're doing an enema. I hope we see some improvement in both, as they are making the night hours very long and frustrating for both of us!!
Annette is going for her daily walks and is committed to continuing the weight loss she saw last appointment. I tried to assure her that muscle weighs more than fat and she may not see the loss, but she needs to focus on how her clothes fit and how she feels. Overall though, she is having a good and busy summer just the way we like it for her. We should hear soon about her worker, Jolee. I have a couple of calls in to find out her status on her paperwork.
Cody is doing well. He is going to go to a week of Vacation Bible School the first week of August and then will go with Marriela to Camp Jr. Good Days and Special Times (day camp for siblings of cancer patients) the following week. Other than that, he's hanging out and enjoying the unopposed time on the PS3 while everyone is at camps and schools. LOL
Sergio is actually having a good summer! We've been going to a park almost everyday and he gets in a good amount of swinging! LOL We've managed to wean him up to 38cc/hr of pedialyte for 12 hours! We are going up by 2cc/hr until he reaches 80cc/hr and then we'll add some formula, a little at a time. We are praying he'll tolerate the process so we can get him off of the TPN (knowing full well, that a mild stomach virus will undo all of our hard work) for at least a little while. This is one of our biggest stressors with Trayvon listed. Who will go to the hospital with Sergio if he has a line infection or gets sick again, and being on TPN raises these chances 100 fold. But, overall he's doing well.
Well, that's all of them!
Take Care and God Bless,
Renee
Sunday, July 11, 2010 4:59 PM CDT
Happy summer!! The past 2 days have been so beautiful compared to the previous week with its unbearable heat.
We dropped Joshua off at the bus heading for Double H Hole in the Woods. He LOVES this camp and was so happy to be going. He's also been doing his Project Explore everyday and loving that as well. It's the first time he's actually asked for his stuff and helped to prepare for going to the rendezvous location each day. He's having a wonderful summer. We also ordered and received his new medication from Canada. We will start it when he returns home from camp. Praying it offers us a wonderful reprieve from the surgery questions.
Marriela and Trayvon started summer school last week and this week both will attend Lysander Day Camp from 9 - 3 daily. We rotated Marriela between camp and summer school because summer school is only a 1/2 day long. She needs the all day activities to keep her busy and in motion all the time! Tray will be going to the sibling Camp Good Days and Special Times as well as his Hope with Heart camp and attending summer school for all 6 weeks.
Annette is going to Casey's Place every day but Friday from 12 - 5:30p and on Friday nights she attends Teen Night at Casey's Place. In August she will be going to her New Visions College experience at OCC and in mid Aug. she will go to Alumni Camp at Hole in the Woods.
Cody will get to go to Jr. Good Days but that's pretty much it until next year! LOL He gets to do a lot with me and Peter so it's not so bad.
Sergio is laying low at home, but we've been making sure he gets out at least once daily. Even if it's just an air conditioned ride in the car to do errands. He likes to lay in the sun on the ramp out front, but then he overheats and doesn't feel well, so we have to limit his sunning time and he doesn't like that at all!
As for Trayvon and the transplant. We are going to list him, just as I had suspected they would recommend. However, since he's so stable right now, we're going to wait for him to enjoy his summer and camps before listing him. He clearly is having issues with the heat and has virtually no stamina any more. Today at the 2 parks, he just stood or sat at both of them. He does enjoy and plays hard in the pool. We will wait for him to return from his heart camp (where they are going to introduce him to other kids who have had transplants)and list him the day after he comes back. Due to the many factors involved with Tray, his wait will probably be a longer one, but only God knows when that moment will happen and we can't have him sitting 4 hours away from us at camp when the call comes through! The team met about him again this past Friday and identified as many methods of transporting us to NY when the time comes as they could. I think the best solution at this time will be to be admitted through a service (ie. Pallative Care) and then be transported by ambulance to NY. This leaves both vans here for Peter and it will get us there faster than if I risked driving and getting pulled over for speeding. I should be getting a call tomorrow from them with our plan and then we'll just sit tight until the day he goes on the list. I'm freaking out inside, but relatively calm on the outside. Just like always! LOL
I have one more issue. We try not to ask for help unless we truly need it. I think Peter and I meet the needs of the kids pretty well with whatever resources or time we have. But, with the possiblity of me being away for as long as 3 or more months when Tray goes to NY, we need to be prepared for all situations that could happen at home as well. If Peter is full time care giver of 5 children (4 medically challenged) then he isn't going to be able to work full time anymore. I come to my friends to ask if you have any ideas for a fund raiser. We need to set aside some money for Peter to be able to travel with and without the kids to come and see me and Tray in NY. He needs to be able to maintain the cars and the gas and the parking fees here in Syracuse as well as NYC. We need to hire a babysitter who knows how to handle the various medical problems and how to give the meds, etc. It is always so awkward to ask for help, but if there ever was a time, now is it.
Well, that's it. LOL
Take Care and God Bless,
Renee
Thursday, June 24, 2010 7:41 AM CDT
Yesterday was our appointment with the Transplant doctor in NYC. During the echo the tech disappeared for over 20 minutes and my heart was racing suspecting they found something wrong again. Well, in the end, they were just so shocked at how poorly functioning his heart was, but once the transplant doctor asked them to pull up his old echos, they all breathed a little easier to see it's been like this for some time! LOL Gave them quite the scare apparently! The doctor said "there's a reason he's seeing ME, to be evaluated for a transplant!"
So anyways, the consensus is... Trayvon's case will be presented tomorrow to the committee for review. There is a new Chief of Surgery that has done some amazing new techniques for some kids that helped them prevent a transplant, but due to Tray's very poor function, there is little chance that there is a surgery that can help him. In addition, they would ONLY risk an additional surgery if it were to be curative since the more open heart surgeries a child has before transplant, the more difficult the transplant is due to scar tissue and Tray has already had 3 very big surgeries. The other concern was that Tray's anatomy is so unique and abnormal that it will be a very, very difficult transplant. He is at the highest risk of complications of all subsets of transplant patients, thus it is imparative that he goes into transplant as healthy as possible to give him the best chance of surviving the complications. Another complicating factor is the fact that he's Blood Type O, which is the rarest and therefore will extend his wait that much more. The other issue is that Trayvon's pulmonary arteries are not useable for transplant and therefore, his new heart will have to come with pulmonary arteries and that can only happen when the person is not also a lung donor, so we will have to wait specifically for a Type O, heart only donor. Are you confused yet?? I am!! At this point, Peter and I are of the thought that we will wait until the end of summer so that he can enjoy himself. If we were to list him now, then he has to be in close proximity to us at all times not knowing when the call will come and the distance we will have to cover to get to the hospital when the time comes. This would remove his ability to go to his summer camps, etc. I won't do that to him, not yet. So, in a few months he'll be listed as Status 2 and the wait will begin. If he needs IV support, he can still stay home, but that will bump him up to Status 1A and thus maybe make the wait a bit shorter. To say I'm scared for how this will effect Trayvon, as well as how we'll do this as a family with our particular set of children and issues, is mind boggeling. But, we've done everything before as a team and we'll do this as a team and failure is not and option.
I also had a meeting with the Pallative Care team for Sergio last week. I heard the " this is a progressive disorder and most of our kids do great until they catch a virus and then... He will not make it to adulthood, but we can make his quality of life the best it can be." I already knew this based on my research, but boy was that a slap in the face. So we have a game plan for any future line infections and a new plan for managing his TPN and lab work. We are also working on getting the results of his biopsies as well as his echo so we know if there are other areas of concern. Overall it was a good meeting, but had a nasty after taste once I walked out.
Joshua did his IVIG on Tuesday with no problem. We were in and out by 12:30!! We have also contacted the doctor to let them know we want to pursue the Frisium. We'll have to pay out of pocket since we're the only country who hasn't approved it yet! Europe and Canada have been using it for over 15 years and our FDA hasn't found it safe yet... are you kidding me!? Whatever, if it works, then it works, FANTASTIC!!
Annette went to her pulmonary and immunolgy. She did great for the immunology appointment and they have scheduled her to have all of her post-IVIG lab work to be drawn at the next appointment. We'll see how her body is doing off of the IVIG, though I can tell you, she's doing well right now! Her pulmonary appointment was better than the one 3 months ago, but not as good as several appointments ago. She needs to do her puffers every day and NIGHT and she tends to forget the night one. So we're going to work on that. Other than that she lost 3 pounds and was super proud of herself!
Cody is doing great and all done with school. Now, if I could just teach him how to not fight with Marriela all the time, we'd be golden!
Marriela is also doing good for the most part. She seems to have settled down quite a bit. This week coming is going to be hard, since she has no school or camps scheduled yet. But, we'll keep her busy the best we can, LOL.
Justin is leaving on Saturday. We're all sad to see him go. He's done a great job on all of his exams and we have a little treat to surprise him with as a reward. He's been loving the pool with the kids the last 3 days!!
Well, that's all of them!
Take Care and God Bless,
Renee
Wednesday, June 16, 2010 4:13 PM CDT
We have accomplished a lot in the past few weeks. Yesterday Sergio went in and had his muscle biopsy, echocardiogram, colonoscopy/endoscopy and changed out his yucky old G-J tube for a brand spankin' new one. He handled it like a champ and even woke up relatively well! I never would have imagined him doing so well considering how bad things were for him just two short months ago. Now we wait. We wait to see if the biopsy shows us anything new or adds anything to the picture we already have. I'm not going to stress over any of it. I am going treat him as if he has a mitochondrial disorder until otherwise proven wrong, since virtually every one of his issues are easily attributed to this disorder. Yes, there other disorders that can explain one or two of his issues, but not ALL of them...mito does. So we move on and forward. He's going strong right now and in the past week seems to have really made a full recovery since way back before April. Other than his TPN (IV nutrtion) he seems to be the same old Sergio from March.
Joshua had a nice size seizure in the shower the other night and hurt his back. It's all so frustrating. We are working with the epilepsy team to find a medication (off label and not FDA approved) that has shown some promise for his seizure type. This is to hold us over until surgery. Other than that, he's doing well.
Nettie is doing great and finally has an interview with a potential new worker this Friday. She is all done with school and has been going to Casey's Place everyday. Trying to be sure her summer is full of activity so she doesn't veg out in her room for days at a time!
Tray is all set for his appointment in NYC, but still working with Orange Co. adoption to arrange his transportation. It's to difficult for me to drive AND attend to the needs of the kids on these long trips, so we made arrangements in advanced, before finalinzing the adoption, that they would provide transportation (through medical cabs) to and from NYC for his cardiac related issues. However, they are not all that hip on following through this far out of his adoption so I have to keep getting on them to honor the agreement! He's doing ok though and think this may just be a check up...but whenever I think that, major things change. LOL jTray just had his Honor of Court Ceremony with his Boy Scouts troop. He was very proud to be welcomed by his new troop and we look forward to helping him earn a lot of new merit badges!
Marriela is transitioning to a new psychiatrist next month. Her last one was doing his Fellowship and was only here for 2 years. We have now earned a spot with a "staff MD". These slots are reserved for the children with the greatest level of difficulty, sigh, Marriela was easily chosen to take a spot. We are adding another dose of her medication to the afternoon to see if that helps. It's hard to tell, but I think it is. She tends to be very, very hostile when she gets home, but after the meds, she seems to settle down a bit more than she used to. We also have transtioned out of psychotherapy for now. She is actually just too hyper to treat at this time. She literally does not have the ability to sit and attend to anything the therapist is saying or doing to get anything out of the sessions. Peter and I loved going to get pointers, but the therapist felt that he had taught us all he knows and that we were actually teaching him how to handle kids like Marriela now!! So we move on and wait for her to become more developmentally and physcially capable of participating in therapy sessions.
Cody is doing great and did his end of the year UPK program. I missed it since I was inpatient with Sergio, but Daddy said it was wonderful!
Justin is doing awesome and today we learned he got a 95 on his Global Studies final. He also received a 100 on his Math final (still needs to do the regents), and a 92 on his Studio Art final. To say we're proud is an understatement.
Well, that's all of them.
Take Care and God Bless,
Renee
Wednesday, June 9, 2010 5:47 PM CDT
Hi everyone!
What a rainy, cruddy today was! Sergio and I went to his pre-op appointment with the surgeon. All is set and I even had them arrange to change out his G-J tube while he was under so I didn't have to take him to Interventional Radiology and stress him out severely the following week. So, on Tuesday he has a muscle biopsy, an echo, a colonoscopy/endoscopy, and the changing out of his G/J tube.
We saw the new neurologist yesterday out at Strong Memorial. He found things to work against the Mito diagnosis and things worked in favor of it. He was very honest and said that he would prefer that it ISN'T Mito since there is no cure and it's always progressive. He felt the biopsy will help, but may not give definitive answers and therefore Sergio would benefit being seen and followed by the neuro-muscular clinic at Strong.
We also saw the pulmonologist yesterday as well. He felt that Sergio needed a full sleep study to determine his overall respiratory function at this point. It would also record the bradycardia (low heart rate) and his CO2 levels. He also felt that we should consider making an appointment with the dr. that runs the home ventilator program for peds. We don't anticipate he will need a full ventilator, but may need to go on bi-pap or c-pap to assist with his overall respiratory effort. Other than that, he feels like Segio is getting too complicated for him to help anymore. Sigh. . . seems to be a running theme.
We also heard from the neurologist for Joshua. They are suggesting that we pursue the surgery and that it will "help" the drop seizures. What they don't know and are concerned about, is that the surgery itself could cause personality changes as well as additional cognitive deficits. There is no way to predict this. So we've requested that they send the info to a center (like NYU) that does hundreds of surgeries a year to ask for their input on potential damage. We'll still have the surgery done at Rochester, but just looking for additional input from people who deal with these complicated situations. My worst nightmare would be to cause personality changes, lose cognitive skills and NOT get any additional seizure control. It would all be for naught. But, Peter and I both feel that at this time and for the rest of his life, he will be controlled by his seizures rather than the other way around, that is not acceptable to us.
Tomorrow Trayvon has his annual physical (and three immunizations ugh!). Joshua and Peter are going to the dermatologist to get checked out. Joshua has to go yearly due to his radiation treatments and chemo which makes him more susceptible to skin cancers. Friday I go to endocrinoligy with Sergio to go over his last set of lab work and to discuss his need for long term stress dosing of his hydrocortisone. After that, Marriela and I are off to her psychiatrist for a visit and to discuss some med changes due to her more "volatile" personality recently.
Well, that's it for now!
Take Care and God Bless,
Renee
Friday, June 4, 2010 7:28 PM CDT
Mother-Son kickball game tonight at Liverpool Elementary. It was fun, but we lost (we, meaning the mom's LOL). Great night for it.
Joshua is at Casey's Place for the weekend. He is doing well and was pleased to get to go away for his weekend.
Tray's leg is no different so we're just going to sit tight until the meeting in NYC. He's acting and feeling fine so I'm not worried until he or someone else gives me a reason to worry.
Marriela is struggling with some mood changes. She's angrier still and she's harder to "redirect". Tonight she got to ride around as we ran some errands, so that helped keep her busy. Spoke with both her psychiatrist and her behavioral therapist. We have appointments with them in the next couple of weeks and both are investigating different options for her and her treatment. I think she may have just outgrown her medication and needs a bit more a low dose of something else. She had a great week in school and we've had some success with pooing issues. LOL
Cody was approved for his 504 and is the school districts very first 504 approved before the child was even in kindergarten yet! He really only needed it to be able to receive his OT services for his writing difficulties. Now he's getting OT 2 x weekly with Ms. Vestigo and he'll continue with her through the summer right into the next school year.
Nettie's prom is tomorrow!!! I have to make one small alteration to her dress, but other than doing her hair, she's all set! The young man, Sultan, is coming to the house to pick her up at 6:30pm. There is a slew of people coming to the house who have known Nettie and Sultan since they were little kids and in school together and now they're 20 years old and going to the prom!! Oh my goodness it is such a happy and sad feeling all at the same time! I'll have lots of pictures to share very soon!
Justin is at Laser Tag with his friends tonight. His face lit up when he saw his friends all outside the building. He's had such a difficult time getting into a social group and now that he's done it, he's going to be going home. Sigh. Isn't that the way life works. You finally figure out how to do something and the game changes again on you. He is in a bit of trouble and had to ground himself from all computers for the remainder of the school year. Last time he was grounded, he negotiated a deal to get out of his grounding a day early so he had time to work on repairing an x-box he had. The agreement HE came up with was that if he had ANY zeros at all the remainder of the school year, he lost all of his computer time. We had nothing to do with that one, it was all him. Fast forward to present day and 4 zeros in ONE class (art) he had to "ground" himself. LOL He's been very mature about it and has almost finished making up the work. He's doing well, just doesn't have that motivation he needs to be independent in his school work yet. I pray he does well next year.
Finally, Sergio. We met the neuro-opthomologist on Wednesday. She found nothing wrong, much like I knew she would. He was less than cooperative, but she ruled out pseudo-tumor cerebri. She did say that his Diamox dose was way to high and we need to wean him down soon. So we changed him today. One more doctor still no answers. Now we are going out to Rochester to see another neurologist on Tuesday. This time I'm going prepared with a better case picture for him to see and for him to help identify a possible doctor to oversee Sergio's case. Yesterday I was googling Mito Disorders and came across this Mito site that was mind boggling!! I was reading about my son on virtually every page! He has about 90 f the POSSIBLE side effects of having a mitochondrial disorder. This is what his GI doctor has been saying has all along and what the PICU doctor was alluding too when his Lactic Acid levels were so high. I think we have our answer, though the tests are often inconclusive. But, the muscle biopsy is a good way to try and determine exactly what kind of disorder he has, knowing though, that the answers may not be there yet. However, there is no doubt that we are in the right ball park finally!! It may be necessary to go out to the Cleveland Clinic to see their Mito Clinic specialists. There are several kids in the local area that go to the CC for their Mito kids. I DON'T want to go if I don't have to though, as this is just a long ride at a time we have a lot of stuff going on.
Overall, he's doing ok right now. We tried to use his J-tube for 10cc of Pedialyte over an hour but he became bloated and kept putting his nurses hand over his tube and belly to tell her he hurt. We'll try one more hour tomorrow, but if the same thing happens, we'll back off again for another week. His biopsy and other tests are now scheduled for Tuesday the 15th.
Well, that's it. Nurse is here and I need to go hook up Serge's TPN.
Take Care and God Bless,
Renee
Sunday, May 30, 2010 8:47 PM CDT
Hi everyone!
Happy Memorial Day! Thank you to all of the incredible men and women that lost their lives so we can be free to live ours, what a sacrifice. May God grant comfort to all of the mom's, dad's, wives, husbands and children missing their loved ones. This country is a much better place because they cared.
We had a great day today! Went to Peter's family reunion in Elmira today. The kids were wonderful, the weather was wonderful, the company was wonderful and we all just had a great time.
Health wise, all are stable. Cody did in fact have Coxsackie Virus and is still doing a soft/liquid diet due to the blisters, but the fever was done on day 2. He seems fine other than not being able to eat hard food. I think by tomorrow we'll be able to advance to some harder foods.
Nettie spent the weekend at Casey's Place. This week we go to get the finishing touches for her Prom! I can't believe my little baby is going to the Prom, how awesome is this! She is going to be beautiful and I will post lots of pictures.
Joshua continues to have seizures every 3-4 days. His last one was Thursday night at the baseball game, he was standing, waiting for his turn and BOOM... down he went. He finished the game though and no one thought anything more of it which was awesome.
We did get a surprise call for Trayvon. I had contacted NYC finally to see if they had reviewed the tests and reports from Syracuse. Dr. Adinizziono wants to see him the 23 of June. I was completely surprised, as we were told the cath wasn't that different than his previous one, but I think the stress test revealed a bit more info about how poorly his heart is working. I guess we'll go down and see her and get her input as to how we proceed now. I have been worried about him for a few days now though. His right leg has developed some significant distended veins from his foot all the way to his thigh. They are very, very prominent and recently have progressed right up his leg. I did talk to the doctor on call yesterday and he felt that there really wasn't anything serious to worry about unless he has changes in his breathing or has a reduction in feeling his leg. We'll call for an appointment on Tuesday with Dr. Attallah. Otherwise, he's doing great!
Marriela is still doing well. She has actually had some success with her "problem going potty" and I think it's helping her feel better. We had her CSE meeting for her IEP and we're going to keep her program the same except for one thing. We're going to add some consult time from the life skills teacher to start adding some life skills to her overall program, as that will probably be the type of program she will need by the time she enters Middle School. I am trying to be proactive at this point. Overall though, they were very pleased at the improvement in her behavior and she is working hard to be an active member of the class vs. just a kid in the room. The one to one was a HUGE help and that's staying for sure.
And Sergio. We saw the GI doc on Wednesday. He is not optimistic that Sergio will ever regain use of his GI tract. He feels that he is following the classic pattern of mitochondrial dysfunction or defect and the systemic problems he is having is characteristic of it as well. If in fact he has pseudo-obstruction, then he will he will no longer be a GI patient and his care will be transferred over to the surgery department who will manage his TPN for the rest of his life.
On June 8th Sergio is going to go to in for a muscle biopsy, an endoscopy and colonoscopy, an echocardiogram and an MRI of his brain and spine with a lumbar pucture. He's staying at least one just for the amount of anesthesia he's going to have. But, he also had a need for a lot of pain meds after the LP last time. We see the neuro-opthomologist this Wednesday to rule out or in Pseudotumor Cerebri. Overall, he's doing better than he has in a while. His heart rate has slowed down, he still breathes too fast, but not like he's in distress. As of tonight, we're stopping his stress dose steroids to see if he can maintain his current status. If not, then we'll have to visit the fact he may be steroid dependent again as well, which means we've assured him that his adrenal gland will never turn back on. Sigh.
And last but not least, Justin. He's doing very well. He's going to be going back home at the end of the school year and he'll be greatly missed by us all. But, the boys. . . they will be very, very sad. He's been a fun playmate and a great "role model". We're pleased he has done so well this year and pray hard that it will continue into the rest of his school career.
Well, that's all of them for now.
Take Care and God Bless!
Renee
Friday, May 21, 2010 1:11 PM CDT
The Search Continues........
The thousands of dollars of tests sent out to Mayo Clinic in MN failed to find what is wrong with my baby. He does not have Hunter's Syndrome. He does not have some currently identified genetic syndrome.
Today we ran cultures of his blood for fungal, aenerobic and aerobic bacteria. We also ran a ton of blood work to see why he is working so hard to breath. Last night, his sats began to fall and now he needs O2 for both low sats as well as work of breathing. We also did an x-ray today to compare to the one upon discharge to see if there are any obvious reasons for his issues.
He failed his feeding test miserably. He is TPN dependent now indefinately. This is heartbreaking and difficult for me. I had so hoped to go to my reunions for HS and College, but, we don't have any RN's and LPN's can't do central line care. It's to much for Peter to handle along with all of the other meds and medical care the kids need. I miss being normal in the way most mom's get to be normal. . . but, wouldn't change one thing about my life at all!!! I am not complaining, just acknowledging that we have crossed a bridge with Sergio and may never be able to go back.
Yesterday, at the time Joshua should have been in his fMRI to determine the extent of surgery he could have, he was home instead, seizing with Peter holding him up to prevent him from falling straight backwards down the stairs. No word from anyone on how to proceed now.
On a great note though, Annette, Joshua and Trayvon participated in the Special Olympics and had a GREAT time!!! Trayvon experienced his first S.O. this year and took first in the softball throw and 100 yd dash! He was strutting around like a proud peacock with his ribbons pinned to his chest and smiling at all the girls. What a great opportunity for him to enjoy being a winner!! Joshua took first in the 50 yd dash and the softball throw as well and took 4th in the running long jump (which is quite funny since Joshua doesn't like to jump AT ALL!! LOL). Nettie took first in the powerwheelchair race and 3rd in the softball throw ('cause she throws like a girl! LOL). They all had a beautiful day and a great time. I'll post pictures very soon.
Marriela is doing well, though she is profoundly constipated still. Yes, since the castor oil debacle, she is still not going! YIKES. She is getting an enema in about a half hour much to her dismay! But, it's our date tonight and I don't want her crying about how much her belly hurts while we're out for our 1.5 hours a week. LOL
I've got to cut this short, Sergio is yelling!
Talk soon,
Renee
Monday, May 17, 2010 8:16 PM CDT
I know, I know, it's been a while. . . so sorry, my bad.
We've been busy here. Sergio is still home from the hospital, but we function daily as if he's going back in at any moment. It's a hard way to function, but if we didn't, we'd never be prepared when/if it happens. He's not well, but he's not worse. He breaths too hard, too fast. His hands and feet turn blue or purple with no reason. He is irritable and clingy most of the time, with some moments of "fun" shining through. He had a great day on Sunday and even made his first public outing in about 4 weeks to the zoo. We started his feeds in his J-tube (his intestines) yesterday and today he is already struggling with it. My heart tells me, we no longer have a functioning GI tract. . . though we don't know why. I run his TPN (IV food) from 8p to 8a each night and flush his lines 2x daily. He's having bloodwork done twice weekly as well as once weekly dressing changes. His G/J tube hurts him and he constantly holds his tube with his hand and puts yours on it to show you the pain. He lives on Morphine, Tylenol and Motrin to get through his day. His heartrates are too high as well. We are waiting patiently for the appointment with neuro-opthomomlgy, and if they feel I can get him in to see her sooner than June 9th, by admitting him, then that's what we'll do. Today we ran lab work to see if he has an infection brewing, as his lungs sound junky again. Unfortunately, everyone closed and no one called so now I have to play gopher and get the information. UGH!! Overall, we've been status quo - sick but not getting sicker, I'll take. . . for now.
The rest are doing ok.
Marriela did have a puke fest today, But I am suspicious that it may have been caused by the castor oil I gave her to help her poo. It did not help her go the way I had hoped, but her belly sure is empty!! So gross and truly praying that it isn't a stomach bug!!!
Joshua was suppose to go out for a fMRI this week, but someone, somewhere forgot to mention to the MRI doctor that he has a vagal nerve stimulator. It's a small device implanted in his chest with a coil wrapped around his vagal nerve. Like a pacemaker for the heart, it emits an intermittent signal, tricking the brain into not seizing. It works for his absence seizures, because when we turned it off last admission, he started having absence seizures by the dozens! However, the coil around his neck is metal and not compatible with an MRI machine without changing it to a special, less powerful magnet. However, the functional MRI relys on a magnet TWICE the strength of a traditional machine, it would literally cause the coil in his neck to be pulled right out of his skin and sever his vagal nerve. Not good. You would have thought someone would have thought of this before telling us that this was the ONLY test they had to determine if surgery is an option!! Now we either sit back and admit defeat and let the seizures run his life, or we demand that they go back to the drawing board or start calling around the country to get some ideas for surgery! It's exhausting.
Tray is doing well. I have heard nothing from NYC and will call this week to see if they have reviewed the paperwork we have sent them yet. He has NO stamina at all and we have noticed how swollen his face is when he gets up each morning. He's also very intolerant of any heat and frequently needs to sit and "rest".
Cody is doing well. We are moving forward with a 504 plan to allow him to recieve OT services in kindergarten. Since he is not "disabled" in the sense of needing an IEP, he can not receive one related service. However, the 504 is a different kind of tool that will allow him to access modifications and services to address his fine motor issues. I think it will work well for us. He LOVES lacross and baseball. He is soooo good at sports and is very competitive. . . don't have any idea where that came from. LOL
Annette continues to baby her injured foot, though tomorrow we are allowing her (with my presence) to take a walk to the corner and back and then wait to see if that hurts. She ices faithfully each night and we're down to only 2 motrin each evening to reduce the swelling. I think, as long as we keep her off it for a bit more, she'll recover fully.
Justin is doing fantastic. His grades are great and he was nominated by his science teacher for the Achievements in Science award. Only one in the Annex that we could determine!!
Well, that's all of them. Til next update!
TTFN,
Love, Renee
Wednesday, May 5, 2010 7:29 PM CDT
Hi everyone,
We've been home since Saturday. We had a wild ride inpatient and almost saw the new PICU first hand thanks to a wonderful pneumonia that came out of nowhere! But, that has improved dramatically. His ileus on the other hand, has not improved and we're now home on IV nutrition called TPN. This runs 24 hours a day and we're doing it for two weeks before trying to use his intestines again. Praying hard that all they need is a break for a bit and then they'll fire right up.
When we went down to get our PICC line they finally decided to also do the LP and found that he has high pressures (which I have been saying for over a month now! UGH). He is also on Diamox now to try and stabilize his newest diagnosis, pseudotumor cerebri. Unfortunately, he continues to have head pain, and needs round the clock Motrin and Tylenol. Tomorrow we are discussing adding Morphine at home until we can come up a with a more permanent solution to his high pressures. I think a shunt is necessary, but without a few days of continuous monitoring, we may not be able to "prove" to the docs that this is the case. To do the monitoring means back in the hospital and in the PICU. He will HATE this so I'd like to try and avoid it for a bit if possible. We are slated to see a neuro-opthamologist in the near future (trying to get an emergency appointment) to determine if his optic nerve is damaged by the pressure. If there are signs that it is, then the shunt is a must.
Cody has also been pretty sick with a bad asthma flare complicated by an ear infection. However, once he started the antibiotics, his stomach started hurting and has escalated daily to the point of not being able to eat for almost 5 days now. Took him to the doctor today as well and I have already collected the lovely stool specimen they want to test for bacterial overgrowth. I have to say though, he is much better since leaving the doctors! LOL
Nettie continues to struggle with her foot and we took her yesterday for an x-ray just to be sure we didn't see any broken bones. Negative. But, she may have torn the large tendon in her foot that runs along the ankle and down into the arch of your foot, thus she needs to see the orthopedic surgeon to be sure all is healing well.
Marriela met with her psychiatrist today and we're all very pleased with how well she is doing right now. However, she had some high blood pressure readings and this is probably due to the large amount of clonidine she takes at night. It's causing rebound hypertension. So we're adding a very small amount of the same med in the am to try and prevent this from happening. She'll get BP readings done twice a day in school for a week to see how the readings look. We've also earned ourselves another EKG to be sure her "chest pain" isn't a sign of something else. Overall though, she's doing well.
Joshua, Tray and Justin are all doing good too.
Very tired now and Sergio is crying non-stop and is very overtired himself. Need to go and cuddle him for a bit.
Take Care and God Bless,
Renee
Monday, April 26, 2010 8:08 AM CDT
We are back inpatient again. Sergio is sicker than he was before we were sent home. Saturday his respiratory status was shaky at best and his tummy was so bloated. Though he did sleep through the night, when he woke up on Sunday, his tummy was 3 times the size and hard. I knew there was no way he could stay home. His pain is severe, he's not willing to move and we're now on morphine to help make him comfortable. The ER x-rays revealed a possible illeus (when your intestines stop working). His lungs are filled with crud and he is on high flow O2 right now. He'll play with my phone for a few moments right after he gets his morphine and then he rolls away and wants no one to touch him or go near him and he holds his hand and blanket over his g-tube all the time to try and relieve the pain. My heart is hurting, as I have no idea whats wrong. If a virus did this to his intestines, then I forsee issues. A virus shut down his stomach last year and it has never started working again. What happens if his intestines decide to do the same!? His head still hurts as well as his stomach so I think I'm going to push for the Lumbar Puncture to be sure we don't have increased pressure in his head that can't be seen on the MRI. If he does have Hunter Syndrome, then this is a very real possiblity and a common complication of the disease.
I did run home yesterday to get Marriela's hair done and the clothes put out for all of the kids for 4 days on the off chance we're still here then. Peter is iffy on his trip to Florida now and that makes me so sad, as he was so excited about it.
The rest are doing well. Nettie's foot is getting better as long as she doesn't use it. Marriela recovered without any issues from her high fever Friday night. Joshua has remained very stable and s-------- free (we don't say it any more, 'cause when we do, they come back!) for over a week now (increase in med must have helped!). Tray is doing fine other than waking up all puffy, Cody is fine and so is Justin. He got home yesterday and suprised by already having his homework assingment done that was due today! That's our good boy/nephew! LOL
Well, need to get back to my baby. Thanks for all of the prayers and well wishes.
Take Care and God Bless,
Renee
Saturday, April 24, 2010 7:40 AM CDT
We are home. Sergio is still quite sick from a respiratory status, he was positive for both RSV and Para-influenza. I did some research and with the help of some very experienced friends who have been through similar situations, made some recommendations to the doctors. They were intrigued by the treatment suggestions and after consulting with everyone, we decided to try one additional trial to see if the Lactic Acid was due to hypoxemia.
**** Sergio's Lactic Acid levels have been quite elevated for a while now and it correspondes with his other symptoms. High lactic acid can be metabolic (or caused by an electrolyte disruption) or respiratory (when the body isn't producing enough oxygen to keep the muscles and organs happy thus building up lactic acid. . . think of a really fast sprint and you develop cramps afterwards - that's your body trying to compensate for the lack of oxygen the run caused temporarily). Hypoxia is when there isn't enough oxygen in the body. ********
Based on some other abnormal red blood cell results, the thought was that Sergio, despite having a good number on the Sat machine, wasn't perfusing his body and muscles well. . . well, after being on O2 for his respiratory virus his lactic acid has almost returned to normal. Sergio has restrictive lung disease for some unknown reason and is now O2 dependent to prevent his body from building up lactic acid. It's been hard transitioning back to that mind set of having to chase him around with the O2 all the time, tanks in the car, tanks on the wheelchair, emergency tanks in case of power outages, etc, etc. Not to mention the fact that he is mobile now and is going to constantly be tangled up, trapped and wrapped up in the long tubing. But, it's a minor inconvience if it will keep him happy and healthy.
After meeting with a total of 14 specialists in addition to our own doctors from the outside, we have no clear answers yet to what is happening to my baby. However, we are now certain that whatever it is, is probably systemic and metabolic or mitochondrial in nature. The guesses are leaning towards an MPS disorder, specifically, Hunter's Syndrome. It's a bad diagnosis, though there is some hope with weekly enzyme replacement infusions. We don't know for sure yet, but the blood work has been sent and when he's healthy, we'll send out a muscle biopsy. I am also going to collect urine on Monday to screen for MPS.
After arriving home Sergio found it difficult to acclimate back to his surroundings. However, once he found his swing, he settled in. Not long afterwards, Nettie fell out of her chair and twisted her ankle and by 9:30pm she was on her way back home from her Teen Night in agony. I really thought she has broken some bones in the top of her foot based on the swelling and amount of pain she was in. However, this morning, the swelling is much better, no bruising and she's not needing more than some Motrin for pain, just a bad sprain. Keeping it elevated, iced and on Motrin will be Nettie's day!
Marriela has made some nice progress on her bike with only one training wheel. I was taking her outside to see her ride, when she started complaining her chest hurt. she had just finished 2 glasses of OJ, so I gave her some reflux meds. After a Prevacid, a Gas-x, and 4 tums, she threw up and was still screaming her chest hurt. I laid down with her and she finally fell asleep. After getting Nettie upstairs (which was NO easy task) and into bed and drugged for pain, I checked on Marriela. She was burning up!! Her temp under her arm was 103 degrees (that's the same as 105 rectally!), so off to get the Motrin and Tylenol for her as well. Around 1:30 she was still burning up and crying so I went and slept with the human furnace where she proceeded to ask me to rub everywhere! Her hands, feet, knees, stomach, face, armpits (yes, she LOVES her arm pits lightly rubbed - like to see her ask her first boyfriend to do that! LOL). Finally she started sweating awful and I knew the fever was breaking. I went to my bed for 1 hour and then had to come down to relieve my nurse. Our regular weekend nurse, is sick as a dog with a head and chest cold. When it rains it pours.
Poor Sergio has been awake since 5:30 and hasn't asked to leave his swing in over 4 hours. He just sits in it, ignoring the world. He's due for a neb and diaper change right now, so I'll see if I can get him up and moving soon.
The rest are doing fine.
Take Care and God Bless,
Renee
Thursday, April 22, 2010 4:32 PM CDT
We are still inpatient as well as impatient. Sergio's cold has progressed and now he's on o2 all the time as well as steroids and round the clock nebulizer treatments. When I get him home I'm sure I'll be able to be more aggressive with his vest therapy and neb treatments to help him over the hump faster. As for the rest of the stuff that we came here for. . . we'll we've seen 12 specialists. All concur they don't know what's wrong with Sergio, but they have managed to find more things wrong than we had before coming in. UGH!! Genetics is going to be running a variety of tests to rule out some big and nasty diseases and we're having a skeletal x-ray as well for that purpose. We have also begun working him up for a Growth Hormone issue that can't be remedied, but may lend itself to some other answers. It's been a frustrating and hard 3 - 4 days and we won't have answers when we come home and his symptoms remain. Once his chest is clear, we'll be coming back for a muscle biopsy and probably a lumbar puncture to rule out increased intercranial pressure (though neurosurgery is adamant that isn't the case - I am not so sure). I think in time we will have an answer, I just don't know if I (or Sergio) is going to like the answers we find. I'm still trying to process it all and praying for a simple, treatable issue, but it's looking more and more like that may not be the case. I continue to have hope but also have a dose of reality sprinkled in.
The others are doing great with daddy and I can't wait to get out of here tomorrow (at least that's my plan) so I can spend some time with my kids before break is over.
I'll update more when I have more info.
Love,
Renee
Wednesday, April 21, 2010 4:06 PM CDT
Hi everyone!!
Well, we're inpatient with Sergio. He has been having issues for the past month or so that have concerned us, but things were getting worse, not better lately so we decided to push an admission to get some answers. With that said, he's had an MRI, tons of blood work and has had umpteen docs into see him but no one has any answers. His Lactic Acid levels are very high, he is very unsteady on his feet, he is either irritable or overly relaxed and his heart and respiratory rate are much too high. I suspect, though the MRI does not support my suspicions, that he has a neurological issue going on. The Neurosurgeon is also suspicious that he has increased pressure on his brain, though on MRI, it doesn't appear so. But, this doesn't explain his elevated lab work. ENT ruled out inner ear disease, GI ruled out Gastroparesis, and neurology has pretty much ruled out seizures as the cause of our symptoms. So we've been here for 36 hours and know no more than we did before arriving. UGH!!!!
The rest of the kids are doing well. Joshua has actually made a nice turn around in his seizure activity, YEAH!! Cody's cough is all better, Marriela is well. . . Marriela! LOL Nettie has a cold and DOES NOT like her mommy being away from home, but otherwise, she's doing great as well. Tray is doing fine as well and no word from NYC, but I have enough right now to deal with and God must know that. I'm sure I'll get their call as soon as Sergio's issue is resolved! LOL
Trying to make Spring Break fun for the kids despite my being here. Peter's been at the local parks for hours each day. Today they came to visit Sergio and I at the hospital and had lunch from the Tim Horton's we have here.
Well, gotta run back to Sergio. I'll let you know more when I know more. LOL
Love,
Renee
Monday, April 12, 2010 4:37 PM CDT
Hi everyone,
Well, no word yet on Sergio's lab work. I think I'm more nervous now that I am not hearing anything, than if I had heard by now. It always makes me wonder if they're calling more specialists, or having the blood work reviewed by fellow doctors, etc. Or, it could just be that my Dr. is too busy to call and my mind is worrying for nothing. Hmmmm, I'll go with that one for now.
Joshua's seizures are increasing quite a bit and he had one, two days in a row. He also had them at unusual times for him. The one at school he hurt his elbow and it happened at 2:15pm and the other, last night, he fell straight back into the coffee table and gave himself a huge goose egg We bought him a new helmet and now he's using Nettie's manual wheelchair around the house so we don't have to worry about him walking and falling and hurting himself. I sent an e-mail to his neurologist to ask what is taking the fMRI so long so we can pursue the surgery. No response yet, surprise, surprise.
We had to use our new Zyprexa med with Marriela on Sunday. She had a very long outburst where she was actually banging her head on the floor, which hurt and that mad her even more upset. It was amazing how quickly it worked and I only used a QUARTER of the dose prescribed!!! She settled down in less than 5 minutes (had been tantruming for over 45 minutes) peacefully went to bed an hour later and slept soundly until 7 am. She did have a definite Zyprexa hangover this morning though, and was a bit out of it when I sent her on her way to school. LOL Overall though, I was duly impressed by this medication and happy we have it to use now for these prolonged outbursts that seem to have no rhyme or reason. We also made some very nice progress with her bowels thanks to 2 enemas, a suppository and a dose of castor oil on Friday. Oh my she must have lost 10 pounds and feels so much better! LOL
Annette's last IVIG infusion was this past Sunday and now we wait for 6 months to redraw her immunology studies to determine if she is going to be able to handle staying off of it and still be healthy. She is excited to say the least!
Tray weathered his cold beautifully and it left without to much of an impact. He still coughs once in a while, but nothing serious. He did very well on his report card, though was nervous to bring it home for us to see. LOL I told him that the C in Reading and Writing are fine if he's doing his very best and his teacher wrote right in the comment section that he was a very hard worker! 'Nuff said on my part!
Cody's cough has only worsened after initially getting a bit better. He's now on oral steroids and every 4 hour neb treatments. I had to give him Codein, Atrovent, Albuterol AND the steroids to get him to stop coughing long enough to sleep. He slept well once he had everything on board, but we need to figure out why he keeps getting up to this point! He was on steroids in Jan., Feb. and now April. That's just 2010! I'll see if we can get a referral to a different pulmonologist, since the one we saw blamed everything on reflux and yet he's treated and still having asthma flares. Hmmmm.
Justin had an awesome report card with a 92.31 average overall and a 100 in Math!! Don't know where he got his math smarts as everyone on my side of the family are TERRIBLE in math! LOL Very proud of him.
Finished filling out the camp applications for Joshua and Nettie (oh my are those things long!), still have Trayvon's, Cody's and Marriela's to fill out as well as 2 summer school apps to finish and send in. Never ending paperwork!! UGH
Take Care and God Bless,
Renee
Thursday, April 8, 2010 3:59 PM CDT
Hello,
Trying hard to keep it current! LOL
Had a wonderful lunch with friends today and enjoyed it so much! Thank you for my lunch and I plan on being there often, it was so nice to get back in touch.
I was reminded today how much I take for granted now. I have been in this world of mine for so long, that I don't remember the worry I had when I suspected something was wrong with my child. I have been in "crisis" mode for years now and find it's so much easier to stay in that mode than switch in and out, thus I don't worry about calling a doctor to report new symptoms or new concerns, they are just a new part of my life, I work hard to find out whats wrong, start or finish treatment and move on. I was reminded today how hard it was to call the doctor and tell them I thought something was wrong with Joshua. I was reminded today how painful it was to call and ask for Cody to be evaluated, these were suppose to be MY perfect children and now, something is amiss. I was reminded how hard it is to be a parent and I am immensely thankful for that reminder. I live in a world that sometimes I need to have a knock on my head to remind me that this IS hard and if it were easy, then I'm doing it wrong. If I didn't hurt when I had to admit I didn't know what was wrong or even that something was wrong. . . then I'd be doing something wrong. I needed to be reminded that we NEED to feel pain when our children are suffering in any way shape or form. It sounds like that would be a given, but when your life is nothing but seeing your children go through one issue after another, you forget. May the reminder stay with me for a long time, it really helped shaped my attitude today with my little ones.
With that said, Sergio is still concerning me. He is still unsteady, still "blah" during all of his therapies, and still "not himself". He is scheduled on May 3rd for a sedated MRI and had a boat load of blood work done yesterday and today. There is nothing solid I can put my finger on, so I will just have to be patient and see what the tests find.
Marriela had a nice visit with her psychiatrist. We increased her Abilify back to twice a day. We also added Melatonin back to her night routine and I have to say, she's sleeping better than she was. We also have a PRN dose of Zyprexa to use if she has any "temporary" flares in extreme aggitation or if she can't sleep for a couple of nights in a row. Our biggest issue is the lack of pooing. She is VERY constipated. I used a suppository today and she's getting daily Miralax. Today we had some success but she needs a LOT more successes to really be cleaned out. Hopefully a few more days and we'll see more and more time on the potty.
Cody is doing well. He still has a bad cough, but the use of some Vicks on the feet with socks on, seems to have helped~! Thanks Sandra for the suggestion! He met with his new OT and she LOVED him and said he was such a hard worker. She is going to push hard for him to continue through the summer since he missed so many sessions with the old OT for one reason or another (all on her part).
Joshua continues to have a seizure every 2-3 days in the evening, but otherwise, is doing great!
Nettie received the good news that the doctors would like to trial her off of her IVIG for 6 months, then retest her. We're going to do this now, when the chances of severe illness is less likely. She is happy to try this! Her numbers have also come back down to undetectable so I am much less worried about anything serious, like medication failure. So all in all, she's doing great!
Tray is doing very well and handling his cold well. No extra oxygen needed and he's very upbeat and loves playing outside. No word from either NYC or Syracuse on his tests so I'm just using my poorest skill. . . patience. Trying to enjoy the times he's feeling so well rather than focusing on the potential for hidden disaster. LOL
Justin is still doing great at school and is actually a bit more interactive with the kids downstairs since the nice weather. Good to see him more (usually he's hiding upstairs in his room on his computer lol)
Well, that's it,
Till next time, take care and God Bless,
Renee
Monday, April 5, 2010 7:54 AM CDT
Hi everyone!!
Hope you had a wonderful and healthy Easter Weekend! We did and it was so nice. My mom came up for the weekend and Justin went home with his mom. Marriela was a little upset that they had the nerve to insert a Saturday in between her day off on Friday and Sunday - as that meant another full day before she got her "goodies". LOL
We went to Beaver Lake on Friday to enjoy the beautiful weather and get the kids out of the house for some nice excersise. They had a lot of fun, and that's where most of the pics above were taken. Joshua did twist his ankle and it's still bothering him a tad today, but nothing serious. The rest of the kids LOVED the outdoors especially Sergio. He was all about RUNNING everywhere! LOL He didn't have a nurse that day so we had him all to ourselves and it was awesome. He just loved the grass and walking all over in it.
As for the kids:
Joshua continues to have a seizure every 2-3 days in the evening. They are tonic clonic and last about a minute. We are still waiting on the fMRI and I'm going to have to start getting mad I think to get the dang thing ordered. Apparently Medicaid feels that it's not necessary and that the info we have should be enough to do surgery. Well, maybe for THEM it's enough and they don't mind if THEY can't talk after surgery. . .but, I do mind if my son can't talk!! So we're going to have to start going up the food chain to get this thing going.
Trayvon has a cold right now and he always struggles more with any additional stress. He vomited last night due to coughing so hard. So far it hasn't resulted in the need for any additional O2 so we'll just ride it out for a bit to see what happens.
Sergio gave us a scare last week, but I'm hoping it's behind us now. I had mentioned that he has learned to walk faster and always seems to be ready to fall face first into the floor. However, after writing that, several other people (therapists, nurses, etc) also noticed his balance was compromised. In addition, he was falling a lot more, and he was running into stationary objects. He stopped playing with his toys and began acting lethargic the middle of last week. At the suggestion of his endocrinologist, who was planning on him getting an MRI under sedation,we put him on stress dose coverage with his steroids. Well the next day he looked much better and as the weekend has progressed, he has returned to normal both physically and behaviorally. We are still on the waiting list for a sedated MRI that won't happen until May right now, but we're much more comfortable with him at this point. The concern would be a neurological condition of some sort (hydrocephalus, degenerative disorder, tumor, etc) that caused the symptoms. I don't really know if the steroids are the reason he improved or if he just coincidentally improved, either way, I was happy! LOL He's fine other than that!
Annette had her birthday party with her friends on Saturday. She has such cute friends and we met a new one. Definately going to set up some time with her friends this summer, she needs to get together with kids and not just adults. We are also still searching for a worker to replace the one that quit. Any takers! LOL
Cody also has a cold and his cough sounds worse today than it has. I'm hoping that his new meds will keep this from becoming a full fledge asthma issue, we'll have to see. He has kindergarten registration in a few weeks. My baby is going to full day program and will ride the same bus as Marriela and Trayvon next year! YIKES!
Marriela sees her psychiatrist today at 4. We are stil just doing the one dose of Abilify in the AM and the clonidine in the evening for bedtime. Overall, she seems to be doing better, though there are moments in the day that just make you want to rip your hair out! We definitely have more good moments than bad now though, so that's what we have to remind ourselves all the time. . . and it's not as easy as it sounds! LOL
Justin has decided that he will be returning to Glens Falls next year. We were saddened to hear his decision, but not surprised considering the difficulties we've had lately with his mom. I'm sure she's swaying his decision heavily. I just pray he continues to do as well as he has here. He has a 93 average this past semester and can only do better the next semester. I am very proud of him!
Well, that's all seven of them. The weather is nice, the kids are healthy and the past is just that, the past. I am looking forward to the summer and actually, have to go and fill out the camp applications right now!!
Love to all,
Renee
Monday, March 29, 2010 12:29 AM CDT
Hi everyone!
The nice weather is coming, Easter is around the corner and today is Annette's 20th birthday!! Things are better.
It's beyond my comprehension on how Nettie could be 20 years old already!! How and when did this happen? She is such a beautiful person inside and out. She is excited about her prom and her dress looks wonderful on her. I am just amazed at how different she has turned out from what we had anticipated 17 years ago. 17 years ago, we assumed she would not be here past 7 or 8. We also felt she would never eat, never walk, never read, write, work, or even toilet train! She was so physically disabled and had such severe cognitive delays at 4 - 5 years old, we were just thrilled when she learned to sit independently. Now, not only does she eat, she cooks her own food. Not only does she walk, she walks over an hour at a time up and down steep hills and around her community. Not only can she read and write, she's writing a book about her life! Annette is the epitome of the "never give up" cliche, she NEVER gives up! She sees life as something to live not to just ride through. She has hopes, dreams and desires. She can't wait to move out and live in her own home, to have a husband, to have children, to go to college, to live a very long and happy life. Happy Birthday Nettie, we'll help you reach all of your dreams baby!!
The rest are doing well. Marriela had a rough weekend and we video taped a bunch for her therapist to see what other options exist. She did go to her cousin's house and had a great time and is going again today for a little party. She also has her last dance class tonight before her recital next month.
Joshua continues to have seizures in the evening. We have increased his lamictal and will have levels drawn tomorrow to assess how high it is. This med has never really worked on his drop seizures before, but at least I feel like we're trying something. Still waiting on the insurance to approve the fMRI, we need this to pursue surgery any further! Very frustrating.
I called NYC today to see if they had yet received the info on Tray's cath report and stress test. . . no they had not. So I called our cardiologist to find out when they were sending it and gave them the fax number directly to the doctors office. They assured me today that they were on it and it will be there in a short while. For me, a short while is 10 minutes, for them, it may be a week. Sigh. I'll call again later in the week to check on it. LOL He's doing well though with no new symptoms and actually using less O2 in school than he had been. So, it's not a life and death emergency, I'm just frustrated that we went ahead and did the testing based on NYC's requests, but have yet to get the results to NYC.
Cody is doing well and the other day actually came home with his name spelled correctly and FORWARD!! That's awesome. He has a new OT who will see him (she also sees Tray, Marriela, and Sergio LOL). She is an awesome therapist and know Cody will make some nice progress with her.
Sergio is doing very well. He's very busy and has mastered the concept of FAST walking!! As a result he constantly looks like he's just about to launch himself face first into the ground. LOL He is also in super destructive phase and prefers all of his toys out of the toy box, all over the floor rather than contained neatly inside the box. He loves to throw things to see "what will happen"! We had his weight check done at the pulmononlogist and it appears he has only gained a pound. We see the endocrinologist next Tuesday so we'll really see how much he has grown. We did get the go ahead to start growth hormone if that is what is recommended. So we'll see what next week brings!
And last but not least, Justin. He's doing awesome. He has a high honors average right now and we are happy with his overall attitude. He is going home with his mom for Easter and then next month for his April break. He also found a camp he wants to attend with our church for teens so that's very cool. He needs to connect with other kids his age and I think he's finally starting to do that! Yeah!!
We'll that's it for now.
Take Care and God Bless,
Renee
Friday, March 26, 2010 11:50 AM CDT
It's been a long and hard few months and the difficulties just continue. Some can be expressed, some can't. Some are caused by "loved ones" and others by total strangers who have preconceived ideas of why Peter and I would chose to raise the type of family we have. And some are just caused by mean, malicious people.
The kids are all doing well.
Tuesday I had to go to the school to pick up Joshua from his school. We received a panicked call from his teacher that Joshua was out of control in full restraint, and it happened right after getting his new increased medication. I jumped in the car and arrived to find Joshua on the floor with a pillow under his head and screaming out of control and aide on each arm, an aide by his head and an aide and the teacher holding down his legs. I quickly tried to calm him down, but he tried to rip the skin off of the arms of those holding him and then he tried to bite my neck. All this time he was trying to kick anyone and everyone around him. I was ready to call an ambulance, but after another 10 minutes (almost an hour after this started) he began to relax enough to remove the restraints. Then he stopped screaming and finally he agreed he wanted a Happy Meal and that he could sit up now. We know this was all do to the increased Klonopin which is frustrating because it was the only drug that really worked on his seizures. But, clearly at this higher dose he has psychosis. We are now going to try and increase his Lamictal to see if we can get better control of the afternoon seizures again. Today we're buying his new helmet.
Then later on Tuesday was Open House night at the elementary school and we took everyone but Justin and Nettie. They had a good time until we got to the book fair. The others all had chosen a book in no time, but Marriela was overwhelmed by it all. She quickly escalated into a full fledge tantrum and we had to remove her from the building. While trying to deal with her and getting her in the car Joshua began seizing in the back seat with a mouth full of medications. Peter ran around and pushed his head forward while I held his mouth open to prevent him from aspirating his pills. Unfortunately, when he started to come out of it, he began chewing them all. GROSS!! Finally he came out of it enough to take a drink and wash the nasty taste down! Meanwhile, Marriela continued to scream and yell and slam herself against the seat. Very frustrating all the way around.
I think, of all of the issues we deal with here, Marriela's Bipolar is by far the most difficult of all. There is no rhyme and reason and people are highly judgemental in how anything is said or done. She screams we're mean, she hates us, she stomps her feet, calls out for help (with no reason too), she slams her body on the ground and she cries at the top of her lungs (usually due to not getting her way). Her meds help to an extent, but the afternoon/evening hours are so difficult, as the meds are worn off and adding more, causes her severe stomach aches. We respect Marriela and what she deals with immensely and yet someone out there felt that her feelings were hurt a tad too much and we were unable to meet her "emotional" needs. There are no words to express my anger and the level of depression that I feel right now. I know God is alright with our child rearing practices and he is my guiding light right now, as you can't trust anyone anymore.
I am so ready for the summer to come. I am ready for change, sleeping in, relaxed days (when Marriela is off to camp LOL) and fun with the kids. We have some fun things for all of them planned. Marriela and the little ones will love the trips to some little amusement parks where they can ride and swim. The older kids we're going to get to do some camping and some fun bigger parks where they can do the rollercoasters and such. Next year we're planning another trip to Disney!! We're planning it for just before Nettie moves out on her own as her last big vacation with the family before starting her life outside of these four walls.
Speaking of Nettie, she will be 20 in just a few short days!!! Can you believe I have a child who is now out of their teens!!?? OMG, it's unbelievable to me. And don't tell me I don't look like I am the mom of a 20 year old. . . I won't believe it at all, but it's always nice to hear LOLOLOL. Nettie is such a true beauty. We tried her prom dress on yesterday and she looks so nice! I'm so excite for her, she's going to have a blast!
Well, gotta go and shower finally for the day!
Take Care and God Bless,
Renee
Sunday, March 21, 2010 6:27 PM CDT
Hi everyone,
All is well here for the most part.
Tray did do his stress test and though he didn't do it without a lot of fear and trepidation, he did do it and did it well. What we did see was something that I had been noting recently, in that his heart does not speed up in response to activity or stress. His baseline was 81 and when he was working his hardest it only went to 136bpm. The name for this problem is called chronotropic incompetence. Based upon the research I did, it's not a good thing to have. The results are being forwarded to NYC as is the cardiac cath and we will await their input. At this point, I am now in favor of listing him for a heart transplant at the lowest level so that he starts to accrue time on the list. That way, once we do get to the critical stage, he will have accrued time on the list and his wait will be shorter than if we wait to list him further up the road. The path to transplant has not been an "if" we will have to travel it, but rather a "when" we'll travel it. I think we're staring at the beginning of the path and we need to be prepared for the twists and turns that come with this new set of changes. I also inquired into investigating CHOP (Children's Hospital of Philly) for transplant. Apparently NYS Medicaid makes it virtually impossible to go somewhere outside of NY so it may not be possible. Our doctor recommended staying with Columbia Pres and waiting to see what their recommendations are and see if we are in line with our feelings before setting ourselves up for a fight we may not even need to have.
Joshua had a good time at Casey's Place this weekend and the kids had a nice time playing outdoors finally!!
I have decided to move Joshua's infusions back to the hospital clinic just to make things easier on myself. I will do three more infusions at home and then transfer back after my supplies are pretty much depleted (I don't want to waste all the stuff we have so I'll just use it up first).
Other than that, nothing new going on here.
Take Care,
Renee
Tuesday, March 16, 2010 7:31 PM CDT
Hi everyone!!
Happy St. Patrick's Day!!
All is going well for the most part. We did have a trip to the ER on Saturday. Joshua had a big drop seizure and put a big hole in his head on the rocking chair as well as gave himself a black eye. I didn't worry about the gash in his head, it was clotting up pretty quickly, but I was more worried that he had a concussion due to hitting both the front and back of his head so hard. The CT scan was negative, we declined stitches (it would have only take 2)and were out of there in only 4 hours!! I think that's an all time record LOL.
Tonight he has his IVIG running. Unfortunately, because our 12 passenger van was in the garage for brakes and inspection, I couldn't start the infusion until I drove Peter over to pick it up. So, now, it won't be over until after midnight. UGH!! I am actually thinking about returning to the infusion clinic at the hospital. It's just so much work to order all of the supplies, keep making sure the med is at the right dose, call in to the pharmacy every week, go to the hospital to get his port accessed, etc, etc. If I go to the clinic, we access, we infuse, we're out in 4 hours and all is good. I was suppose to have a nurse here to help me, but Medicaid has declined our request every time, thus I have been doing all of his infusions by myself for over 2 years now. I already have to do Annette's every week as well.
Trayvon has a cardiac stress test tomorrow. We had to reschedule from the 4th because his doctor couldn't have been there and they want a full staff on site just in case. I have no fears about tomorrow, I'm actually relieved that we'll get a good picture of what his heart will do under stress and during exercise. It will help us make better decisions on what sports, activities and play he can participate in. I'll update with any new information I get.
Sergio saw the PT that Joshua and Nettie see and she felt strongly that he needed braces on his feet ASAP! He has very weak muscles and it's causing him to "collapse" inwards when he's walking which is pushing his knees and hips all out of alignment. We are going to get them fitted next week and it takes about a week to get them. We weighed him today and "think" he's gained a few ounces. We see his pulmonologist next Tuesday so that will be our first real test to see if we're making headway in the height and weight arena. He also spent the weekend away at Casey's Place and had a blast!!! I was a nervous wreck leaving him there, but he did great as did the nurses that cared for him. They loved him (as I knew they would) and want him to come often. I don't think so... LOL
Marriela is doing pretty well. She has had much better weeks at school and she has now been assigned a 1:1 aide for her school day. Her behavior at home should ease up a bit as well, with the improved weather and her ability to ride the "john deere tractor" she got for her birthday. Overall, she's on much less meds, and and doing better.
Cody is doing great. He still wakes up with a "black" eye every morning with lots of under eye puffiness, but he's not coughing, has no reflux, hasn't had any asthma etc since starting his new meds. He loves school and has kindergarten registration next month!! Oh my!
Nettie is also doing well. She has begun wearing special braces on her legs 3 hours a day to stretch out her quad muscles and it's working!! She has much better range of motion and her back hurts a lot less. She is so motivated to do well!! I also talked to her about removing her 2:1 aide for the next school year. She was nervous at first, but felt much better after realizing that everything they had listed as the reason she needed one, she is already doing independently!! It's a waste of district dollars if I agreed to continue with it.
Justin has lost his computer for 5 days due to failure to submit some homework assignments. He always starts out mad, but after some talking always comes around and realizes it's his own fault. Overall, he has a 91 rade point average (not too shabby LOL), but it should be a 95 ! He lost 4 points just because he didn't turn in homework he had actually done! Craziness. Tonight we "reorganized" his various school folders and binders and he's all straightened out now. Life's lessons are tough. LOL
Well, that's it for now. Peter is going to Elmira to spend time with his dad to celebrate what would have been his mom's 71st birthday. She's been gone almost 4 years now, and I miss her tremendously. She was a great, wonderful woman who never thought of herself and ALWAYS thought of everyone else. Miss you mom!!
Take Care and God Bless,
Renee
Saturday, March 6, 2010 6:51 PM CST
Hi everyone,
Hope this finds you all well! We are finally. . . well that is. LOL
Things seem to have settled down some finally. Everyone has stayed relatively healthy and we've been doing normal family activities for about a week now. But, I find the emotional side has really tired me out. I feel like I could sleep a month and still not be fully rested. I know this is normal and will pass, but it's frustrating and trying.
Kama went to his maker on Monday after a terrible day of watching him suffer. We finally broke down and took him to the emergency vet where we were informed that he had a severe tumor of the spine or lungs that was causing irreversible neurological damage to his lower half. It was painful and he had not quality of life remaining. We sent him on his way peacefully and listening to some very terrible elevator music!! Nettie is handling better than I am!! She has all the confidence in the world that he's with her mother and she will see him again. She is lonely though and has shared this in bits and pieces. I think when she gets ready to move out, we'll look into another service dog for her. We'll see.
Joshua had a big seizure the other night while sitting with Peter by the computer. I had just heard from his neurologist and we are currently pursuing the functional MRI and then hopefully some surgery options to try and alleviate these larger ones. Overall though, he has been doing quite well and we really don't anticipate full seizure control through medicines, VNS, IVIG alone anymore. He doesn't seem to mind the seizures though so we'll just ignore them like he does I guess! LOL We did make a referral for him to the Friends of Jacyln Foundation. They link collegiate sports teams with kids who have/had brain tumors. We are talking to the Penn State football program to see if they're interested in adopting Joshua through FOJ. Their initial reaction has been very positive, but they are on spring break so we will wait until they return to discuss it further with them. It's exciting though!!
Tray did great in soccer today! He was goalie and stopped all the attempts except one and his team tied with the other team. This is a huge improvement over previous weeks! He LOVES soccer, so we're so happy that there has been a way to incorporate him into the sport without stressing his heart to much. His stress test was rescheduled for the 17th because his doctor wasn't going to be able to be present at the one on the 4th. Other than that, all is well.
Marriela had a fantastic week at school. She always has a harder time at home, simply because there is minimal structure, unlike school. But, overall she is doing sooo much better lately. Her asthma has been an issue at night and has needed nightly albuterol treatments, but we'll take that any day!! LOL
Sergio is doing great. We have increased his calories to 1250 or 5 cans of Peptamin Jr. daily to see if we can get any growth out of him! He's tolerating it very well and is on his pump from 7pm to 11:30am but doesn't seem to mind it at all. We're seeing pulmonary in a few weeks and it will be a great way to check out his growth. I'm praying we see something!
Cody had a recheck for his ears and lungs on Friday and was all clear. His prevacid, nasonex, singulair combo is doing the trick and he hasn't had a cough or runny nose in over 2 weeks. He looks and seems much better than he has in a long time! He had soccer today too and did great.
Justin, is well, Justin. LOL He went with us to the Spaghetti Warehouse for Peter's birthday today and had a good time. Tomorrow we're going to go and get him a hair cut! Good Lord he looks like a hippie!
Well, that's it for now. Gotta go and make Peter a sandwich.
Take Care and God Bless,
Renee
________________________________________________________________________________________________________________________
Sunday, February 28, 2010 1:37 PM CST
February continues to be a month of sadness for us. Nettie's faithful service dog, Kama, is no longer able to continue in the body he has. We have an appointment with the vet tomorrow to relieve his suffering. The day before Ethel moved in, we had to put my mother-in-law's dog down that we inherited a few years ago. She too, was suffering terribly and we could no longer stand by and watch her decline. Then Ethel. 3 amazing creatures of God and 3 painful good-byes.
We move forward hoping and praying that we have a better remaining year than we have had start.
Today I was able to finally go to Church. For 2 weeks I couldn't because Ethel was here and she had us running. Then last week, we were all sick with the stomach flu. So 3 weeks later, we are finally seeing some sense of normalcy return to our lives. It felt good to be there, though it hurt too. I had envisioned, months ago, Ethel sitting in her wheelchair next to me, listening to worship, and enjoying the sounds and lights of the sanctuary. I brought Sergio and his nurse today to help quell that sense of sadness. It worked to an extent.
Nettie is preparing for her 20th birthday on the 29th of March. I can't believe my "baby" is going to be 20! To think of how far she has come, how many odds she has defied, how many doctors she has disproven and how many lives she has lived despite all of the predictions. She is happy, preparing for life on out on her own (as all children should) and excited about her future. How amazing is that?!
Joshua continues to do well. He is enjoying sleeping a lot, seems his hormones are telling him now that sleep can be a GOOD thing! LOL I cut his hair and gave him a shower the other day. He is still such a little boy, yet he's now in a man's body. I stand in amazement looking at him as well. He has gone through so much and yet, has such an innocence about him, and a wonderful sense of humor. He harbors no ill feelings towards his body or anyone that has to "hurt" him to help him. For that, I'm immensely grateful.
Tray is doing well also. He does question things and is angry at times that he can't be "like everyone else". But, also realizes that he has his own unique talents and skills that make him a wonderful friend and brother. He is liked by all and is rarely in a situation that he can't find someone to buddy up with or befriend. I wish I had the social outgoingness that Trayvon has. It will take him far in life. And the questions and concerns he has are normal and hard emotions for anyone to contend with. No one likes it when their body betrays them and won't allow them to do what they want to do. But, he quickly comes around and finds things that he CAN do rather than CAN'T do. That in and of itself is a great gift we could all use.
Marriela is. . . well, Marriela. She is soooo happy sometimes and other times, she is her own worst enemy. It seems that the air itself is enough to drive her crazy and she's mad at the entire world. Other times, she is the most loving and fun-filled child in the world. She loved Ethel and talks freely of her and points out things in the paper and on-line that she would like to do with Ethel when she grows up. I talk with her and ask her if Ethel can ride in a jeep with her, she smiles and answers "she already is riding in a jeep." I imagine that's try in Marriela's heaven. Marriela's ideal heaven would be all the music she loves, blaring all the time, hundreds of Barbie Jeeps for her to ride all day long and gum by the packs full arrive every morning. Barney would meet and greet her daily and God would allow her to visit Walmart on a whim. Can't say it sounds all that bad! LOL Unfortunately, she thinks life on this side of Heaven should look like that as well. Can't help you there dear!
Sergio is Sergio. Happy go lucky. He wanders around the house, looking for his toys, trying to get into the bathrooms to play in the toilets and laughs hysterically when he does. LOVES the sound of sizzling food on the stove, as well as the sound of the "In-Styler" hair straightner. He laughs and laughs at both of these sounds. He is completely engrossed by men's beards and can't get enough of touching people's chins that have hair on them. Yes, this is very distressing for people who don't know him and he's reaching out towards their mouth with his tiny hands! LOL He finds happiness in his swing and loves to play by himself with his toys (which CAN not stay in the toy box).
Cody, is my cuddle bug. He spends more time loving me and telling me how great Peter and I are than any of my other children combined. He feels no threat at sharing his feelings and will give me a kiss in a heartbeat no matter where we are. He is a bit addicted already, at 4 years old, to video games and has smartened up to the idea that we need to go to a "meeting", means a long boring trip somewhere he doesn't want to be. LOL He is the most polite and self-entertaining little boy I've ever seen. He is also a great back scratcher!
Justin, is just a member of the crew now. He rolls with the punches and seems to just accept that we have a very unique and unpredictable house. He seems to be ok with it, but being a typical teen he doesn't actually share too many of his thoughts and feelings with us. The kids love him and I think he loves playing with them as much as they do.
Our week coming up will be busy. Cody has a recheck for his ears, Justin has a recheck for his reflux, Joshua needs to be accessed for his IVIG, and Sergio has something I am forgetting right now.
Peter's birthday is on the 8th and I hope to give him a great birthday this year. I am terrible at celebrations and want to finally show him how much he really does mean to me.
Till next time.
Renee
Sunday, February 28, 2010 1:37 PM CST
February continues to be a month of sadness for us. Nettie's faithful service dog, Kama, is no longer able to continue in the body he has. We have an appointment with the vet tomorrow to relieve his suffering. The day before Ethel moved in, we had to put my mother-in-law's dog down that we inherited a few years ago. She too, was suffering terribly and we could no longer stand by and watch her decline. Then Ethel. 3 amazing creatures of God and 3 painful good-byes.
We move forward hoping and praying that we have a better remaining year than we have had start.
Today I was able to finally go to Church. For 2 weeks I couldn't because Ethel was here and she had us running. Then last week, we were all sick with the stomach flu. So 3 weeks later, we are finally seeing some sense of normalcy return to our lives. It felt good to be there, though it hurt too. I had envisioned, months ago, Ethel sitting in her wheelchair next to me, listening to worship, and enjoying the sounds and lights of the sanctuary. I brought Sergio and his nurse today to help quell that sense of sadness. It worked to an extent.
Nettie is preparing for her 20th birthday on the 29th of March. I can't believe my "baby" is going to be 20! To think of how far she has come, how many odds she has defied, how many doctors she has disproven and how many lives she has lived despite all of the predictions. She is happy, preparing for life on out on her own (as all children should) and excited about her future. How amazing is that?!
Joshua continues to do well. He is enjoying sleeping a lot, seems his hormones are telling him now that sleep can be a GOOD thing! LOL I cut his hair and gave him a shower the other day. He is still such a little boy, yet he's now in a man's body. I stand in amazement looking at him as well. He has gone through so much and yet, has such an innocence about him, and a wonderful sense of humor. He harbors no ill feelings towards his body or anyone that has to "hurt" him to help him. For that, I'm immensely grateful.
Tray is doing well also. He does question things and is angry at times that he can't be "like everyone else". But, also realizes that he has his own unique talents and skills that make him a wonderful friend and brother. He is liked by all and is rarely in a situation that he can't find someone to buddy up with or befriend. I wish I had the social outgoingness that Trayvon has. It will take him far in life. And the questions and concerns he has are normal and hard emotions for anyone to contend with. No one likes it when their body betrays them and won't allow them to do what they want to do. But, he quickly comes around and finds things that he CAN do rather than CAN'T do. That in and of itself is a great gift we could all use.
Marriela is. . . well, Marriela. She is soooo happy sometimes and other times, she is her own worst enemy. It seems that the air itself is enough to drive her crazy and she's mad at the entire world. Other times, she is the most loving and fun-filled child in the world. She loved Ethel and talks freely of her and points out things in the paper and on-line that she would like to do with Ethel when she grows up. I talk with her and ask her if Ethel can ride in a jeep with her, she smiles and answers "she already is riding in a jeep." I imagine that's try in Marriela's heaven. Marriela's ideal heaven would be all the music she loves, blaring all the time, hundreds of Barbie Jeeps for her to ride all day long and gum by the packs full arrive every morning. Barney would meet and greet her daily and God would allow her to visit Walmart on a whim. Can't say it sounds all that bad! LOL Unfortunately, she thinks life on this side of Heaven should look like that as well. Can't help you there dear!
Sergio is Sergio. Happy go lucky. He wanders around the house, looking for his toys, trying to get into the bathrooms to play in the toilets and laughs hysterically when he does. LOVES the sound of sizzling food on the stove, as well as the sound of the "In-Styler" hair straightner. He laughs and laughs at both of these sounds. He is completely engrossed by men's beards and can't get enough of touching people's chins that have hair on them. Yes, this is very distressing for people who don't know him and he's reaching out towards their mouth with his tiny hands! LOL He finds happiness in his swing and loves to play by himself with his toys (which CAN not stay in the toy box).
Cody, is my cuddle bug. He spends more time loving me and telling me how great Peter and I are than any of my other children combined. He feels no threat at sharing his feelings and will give me a kiss in a heartbeat no matter where we are. He is a bit addicted already, at 4 years old, to video games and has smartened up to the idea that we need to go to a "meeting", means a long boring trip somewhere he doesn't want to be. LOL He is the most polite and self-entertaining little boy I've ever seen. He is also a great back scratcher!
Justin, is just a member of the crew now. He rolls with the punches and seems to just accept that we have a very unique and unpredictable house. He seems to be ok with it, but being a typical teen he doesn't actually share too many of his thoughts and feelings with us. The kids love him and I think he loves playing with them as much as they do.
Our week coming up will be busy. Cody has a recheck for his ears, Justin has a recheck for his reflux, Joshua needs to be accessed for his IVIG, and Sergio has something I am forgetting right now.
Peter's birthday is on the 8th and I hope to give him a great birthday this year. I am terrible at celebrations and want to finally show him how much he really does mean to me.
Till next time.
Renee
Tuesday, February 23, 2010 7:04 PM CST
Phew, is all I can say. The stomach bug ripped the house like wildfire. It was profoundly intense and though quick in relative terms, the recovery rate has been a slow process. The only one that hasn't been sick yet is Nettie. However, with her IVIG she often bypasses illnesses that take down the strongest of men! LOL
Cody has been on his steroids for a few days now for the cough that started a few weeks ago (before the stomach bout) and the side effects are not fun! He's very weepy and irritable. Not my usual cuddle bug. :-( But, the cough is improving. We're also using Nasonex, Singulair and his Prevacid to see if we can keep this chest crud at bay for the remainder of the winter. His eyes look terrible! I hope the new meds help.
Sergio had his version of the bug. Since he can't actually vomit due to his surgery to prevent reflux (called a nissan fundoplication), he tends to get very bloated with gas and has pain. So we "vent" him by letting the air out with a tube hooked to his feeding button. He has also needed oxygen for the past few days and nights when sleeping. However, tonight he fell asleep well and so far no need for O2 which is a good sign he's on the road to recovery. We also had his Fair Hearing for his special bed. I think the hearing officer was sympathetic to our case and I'm sure he'll come back with an overturn. Only time will tell.
Nettie is doing well. She was suppose to be fitted for another brace on her other leg for night time, but the vender was a no show at the PT session. I know she was disappointed. She wants to do everything in her power to get better with her walking. He is suppose to be there next week so we'll see.
Joshua continues to complain of belly pain on and off, but that's not unusual for him following anything GI. He has such a low constitution for that kind of stuff, and it lingers with him for days to weeks sometimes. Today we had to pick him up from school because he said it hurt too bad. He has remained seizure free since last Tuesday's wonderful grand mals, ugh! We are increasing his IVIG dose again, since he's gained another 2 kilos. We are up to 50g every 2 weeks now, we started at 50g a month over 3 years ago, that's a lotta growing he's done! LOL He also goes to be fitted for his leg brace to sleep in at night as well as inserts in his shoes to try and align his feet better (he's quite flat footed). He's actually excited about it!
Tray is doing well. He faired the bug better than everyone! He threw up 4 times and the next morning asked for quesadillas. YUCK!! He is however, coming down with something, as he's losing his voice. This is never good when it starts up high, because then it moves lower to is chest where he can't manage his O2 sats and needs to wear O2 a lot more often. Next Wednesday we go for his stress test at cardiology. I never heard back from the cath team, so I am assuming that they are waiting on the info from the stress test before making any more recommendations. Overall though, he's doing well!
Marriela is, believe it or not, medication free right now and doing better than she has in a long time! We accidentally forgot to give her meds to her on Monday due to my absence at the hospital with Ethel. She had one of her best days EVER! So we decided to go for it again. Another GREAT day! The only thing she is currently receiving is her Seroquel at night to induce sleep (and that is hit or miss most of the time unfortunately). She had a great first day back from break, but today was a bit rougher, so we'll see how things go. I pray this is something sustainable. She did NOT like the stomach bug and was mad that "Cody gave it to her". LOL
Justin weathered his bout with the pukies well. We had some zofran on board for all of them and it worked the best for him by far. He was only sick once, but didn't escape the next day "blues" as I called them. The feeling like you've been run over by a mac truck. LOL Other than that he's also doing well.
Well that's the gang. We have a long hard couple of weeks and now we hear that there is a snow storm coming this way and we may have some snow days ahead of us!! Say it isn't soooooooooo!
Well, that's it!
Take Care and God Bless,
Renee
Monday, February 15, 2010 7:42 PM CST
It's been a very hard and long week. Tuesday morning Joshua and I went back to the hospital for his port access. It went great, but I had to share with several people that Ethel wasn't still upstairs, as they had thought she was still hanging on. That was hard. Then we came home and I ran Joshua's IV infusion. While his infusion was running, Peter took the kids to his sister's house while my nurse and I ripped the room down and put away her things and packed up items that were to be returned to various people her life. When that was over I had to run out and buy and outfit for my angel to wear. I found a beautiful little Easter dress with a white cropped sweater, tights and patent leather shoes. She's going to be beautiful. It was suggested by the foster mom that she be buried in the pajamas she had lived in for the last few months and I was totally against that. She deserved at least one day of primping, and getting beautified for her last big day on this earth.
Tuesday night I was looking forward to a wonderful night of sleep but alas, it wasn't to be. At 8:00pm Joshua started vomiting and had a severe stomach ache. At 4:43am he had his second Grand Mal seizure ever. He fell back asleep and actually stopped vomiting at around 4. But at 6:27 he had his second grand mal of the night. After he recovered enough to move him, I took him to the ER for fluids and to get some IV meds for the seizures if he needed them. The ER nurse missed his Port on the first try so I requested that they call someone from the oncology unit. In walks the wonderful nurse that took care of Ethel two days earlier. She did a fantastic job and accessed him on the first try. I bawled as I said thanks and hugged her on the way out. Joshua thought I had lost my mind LOL. After a bag and a half of fluids, no more seizures and some serious perking up, we were out of there around 2:00. He has been just fine ever since.
Today I am meeting the foster mom as she has a few moments of personal time with Ethel at the funeral home. She doesn't want to go alone and I was ok with supporting her through this. She hasn't seen her little one since the day she left her home with us. I also wanted to make sure all of the outfit is on right and she looks as beautiful as I think she will.
Tomorrow, the services are at 12:30pm but they are private due to the fact she wasn't adopted yet and therefore, the family's identity and her status as as a foster child necessitate a certain level of privacy. Those who were closest to her. . .therapists, nurses, doctors, family etc are all permitted. But, those who did not actually know her are not allowed. Thank you to all those who offered to come and support Peter and I and to pay their respects to this beautiful angel. She was never without love and I feel your support, really I do.
I am so happy that vacation is coming to a close in few days. It's been an exhausting week and the poor kids have been bored out of their minds! We're taking them to Chuckie Cheese's today if anyone wants to join us around 2:30pm!! Need to get out and do something unrelated to the sad events and to spend some quality time with the kids.
Cody's been coughing non-stop again, so I suspect that between soccer games on Saturday, we will be making a quick run to the pediatricians for some antibiotics and steroids.
That's it for now! LOL
Take Care and God Bless,
Renee
________________________________________________________________________________
It is with a profoundly sad heart that we have already had to help Ethel move from this world to the next. Se was with us for the week except Wednesday and had wonderful days. We picked her up on Thursday morning and she was doing great until Friday evening when she began having seizures, something she hadn't done in a very long time. On Saturday we called the Pallative Care team out to the house to see if they had any ideas. We tried MANY different interventions at home and she gave my nurses and myself a real run for our money just keep her remotely stable, yet she was still so very uncomfortable and was using more and more morphine and seizure meds that we could have taken down an elephant! This morning when I came downstairs, I knew something was wrong right away. She was not breathing right and right after I picked her up, she went totally blue and I knew we had to move right away to get her out of the house before something happened in front of the kids. We were met in the ER by the doctor and taken straight to a private room where we all went right to town trying to make her more comfortable. It didn't take long to see that she was not going to behave and was going to need more than the cheesy stuff we were giving her. . . she wanted a real high and was going to fight until she got it. It took a bit to find an IV for her, but once we did they started some IV meds and she immediately shifted into low gear and the end was very close. She crossed her finish line at 5:12 tonight with a very, very strong finish. She waited for me to paint her nails, since every little girl needs her nails painted at least once in their lifetime. Ethel's once in a lifetime was today. I was immensely honored to be her mom, even for the short time I was. It was a gift to be there to hold her as she left this world. It really was. Though it was the hardest thing I have ever had to do, I was so proud of my baby, and that she did everything on her terms and no one elses.
I'll update more when I have a moment.
Take Care and God Bless,
Renee
Saturday, February 6, 2010 6:26 AM CST
Today is a big day for us. . . Ethel is coming for the next two days, then going home for the night and then coming back for two more days, going back to her foster home one last time and then she moves in on Thursday. I'd be lying if I said I'm not scare out of my mind!!! I guess her weekends are the worst and here she comes on a weekend. YIKES!! But, we move forward in the thought that this is all happening for a reason and we will do our best to give her a loving family and support and maybe, just maybe, she'll pull off a miracle once again. Only time will tell now.
Tray continues to struggle with low sats. He's actually hit 80 at school and most of yesterday afterschool was only 83-84 which meant he had to wear his o2 for several hours. He's now wearing his O2 at school daily. He still won't wear it in front of kids (he goes out in the hall way to a desk! LOL) but that will change next week after we meet with his class and he gets to tell them in his words why he needs it. He's not happy, but I think it'll be fine once he gets over the first day.
Joshua continues to do well and that's all I'm saying about his big seizures. We do suspect that he has seizures each time he goes to the bathroom for a bowel movement though. This has been an issue for over a year now, and just recently it's become more of an issue. He will often get extremely pale, and then needs to sleep for over an hour each time he goes. This includes sleeping for an hour or more in school daily at this point. But, there is little we can do so we'll just monitor at this point. He had a physical yesterday and we discovered he has a very nasty sinus infection. It's so sad he doesn't even feel the discomfort to let us know something is going on. He also had an ear infection.
Marriela has had a pretty good week in school after we made some pretty big medication changes. In fact, we actually just increased her SEDATIVE so that she gets some all day long now and increased her Abilify which she's been on for some time now. The consensus amoungst the doctors is that the priority for Marriela at this time is to SLOW HER DOWN! They were very serious too, we need to slow her body and her mind in an effort to allow her to absorb her surroundings in an effective manner. What would make you and I sleep for days, just takes the edge off of Marriela and helps her sit for more than 5 minutes at a time. The mind and how it works is truly amazing in an awesome and scary way. But, thus far, we're happy with this past week and learning to take things in small chunks.
Sergio is a bit sick, nothing too major, just an URI. He slept through the night for me until 5:30am (we didn't have a nurse last night, as she was out sick too). He does not appreciate the fact that I'M NOT READY YET to get up, just because he is. LOL Put my i-pod in his crib and went back to bed on the couch. . . it worked for the most part.
Justin had an overall 89.46 average for this past semester. He would have been in the 90 range had he handed in one assingment in Studio Art. I think he's finally get the picture that each time you make a mistake like that, you impact the rest of your HS career!! I also asked the pediatrician to write for a one month trial of Prevacid for him, as he's complaining of heart burn all the time now. We'll see if it works. If it does, then he'll go in next month for a check up and a new script. Other than that, he's doing great and excited for winter break next week.
Annette is away at Casey's Place this weekend. She's mad at me because I forgot her walker. We had a very nice meeting with her teachers and transition team yesterday and everyone had nothing but great things to say about Nettie and her potential employability. I was so happy to hear all the great reports and had a wonderful compliment from the team that Annette has already met all of their goals. Yeah Nettie!!
Cody is doing very well and sleeping soundly each morning until around 10am. He's a morning bum, he's in for a rude awaking next year when he starts kindergarten!! LOL
Well, that's it for now, time to prepare for Ethel's arrival and soccer games galor!
Take Care and God Bless,
Renee
Tuesday, January 26, 2010 7:46 PM CST
Hi everyone!
Let's see, where to start.
First, Trayvon had his cardiac Cath yesterday. The results were less then impressive in neither a good or bad way. The numbers are about the same as 2003, at his last cath, and don't explain the recent decline in function. But, he has some new "shunting" of blood from one side (the blue blood which is unoxygenated) to the other (the "red" side which is oxygenated). The mixing of these two causes his sats to be lower and the reason he responds to oxygen better now. However, what isn't explained is why he now has this shunting, since he didn't have it at his last cath in '03. He is apparently also have multiple episodes of atrial tachycardia, he is just slipping in and out of this rhythm, which is heart apparently is not fond of. A pacemaker however, is not an option, as he so much scar tissue, the pacing wires can not be placed properly. So we now await the cath conference where all of the info is presented to the cardiac team here in Syracuse and the info will be sent to NYC for review. The cath doc didn't feel that he was iminently headed for NY for transplant re-review, but also stated that the only way to "fix" Trayvon at this point is to have a transplant. There is no easy decision when to list or not to list anymore, as it can cause so much disruption in family life due to needing inpatient care, central lines and continuous med infusions to sustain a higher spot on the list. Tray is happy for the most part minus needing O2, and having significant excercise restrictions (which is very hard on Tray as he was always my sports kid).
Ok, who's next. Ethel. We had our meeting and we left with broken hearts and yet more questions. She really is very fragile, more so than we had thought, yet we are not convinced that she is getting the proper care, thus making her this way. The DSS wants us to take her, yet the pallative care team made it VERY clear that they will only take directions related to her care from the DSS only and the DSS is supporting the continuation of a full DNR. This means that if she has a pneumonia and needs IV antibiotics, she will not get them. If she needs to be temporarily supported by a vent to get past an infection, she will not. If she has a seizure that stops her breathing, but not her heart, they will not intervene. Peter and I both agree, this is not what we can support. We feel that Ethel and only Ethel can decide when she is done fighting and we are only in a position to help her live, not to help her die. So we are still working with them to determine what's best for Ethel, regardless of where her final destination is. We will have yet another meeting with the DSS staff to discuss our concerns and to make our voices heard for this sweet baby who has become nothing more than a dieing baby to so many others. Praying God gives us the direction and ability to help her.
Marriela is now off of her Seroquel and we've weaned her off of her Celexa as well. The thought is that the Celexa is aggrevating her aggressive behaviors. Today her behavioral therapist went to her school to observe her in her classroom setting. Apparently he was able to witness her true colors and we will now meet with him and Dr. Demer, her pyschiatrist to discuss a treatment plan as well as a behavorial plan. Oh how I hope they have some good ideas! She tires my brain out with her energy and lack of ability to stay on any one topic for more than a millisecond! I'm going to need drugs soon if something doesn't give! LOL
Sergio is doing great. We missed his immunology appointment due to Ethel's meeting, so now I have to call them AGAIN to try and get his results over the phone. Other than that, he's doing great.
Cody, likewise, is doing fine. Anxiously awaiting his new classroom assessment to see how much he has improved! I think they come home next week.
Annette has a transitional meeting at her high school to discuss her post school plans. Oh does she have an earful for them! LOL That's next Friday. She's trying to grapple with the whole Ethel thing as well. She wants us to take her, because we made her better, she feels we can do the same for Ethel. On the other hand, she doesn't want to share "me" with anymore children, especially one that may need a lot of my attention. She is such a little girl trapped in a womans body. I shared with her that we are struggling with the same ideas as well.
Justin is doing great in school! I think he will end the semester with an A average!! Thus far, we've been very pleased with him and his overall success. He looks forward to surprising the boys with new movies each night and plays with Cody and Joshua so nicely.
Joshua has been complaining more and more of blurry vision without any seemingly simple explanation. I have to call the eye doctor for an appointment soon. He has also been falling asleep in school for upto an hour a day!! He gets over 10 hours of sleep a night and he's still so tired at school. Working on trying to get him closer to 12 hours of sleep, but that means he has to be in bed by 6:00pm!! Don't see that happening anytime soon. LOL Had to buy him new sneakers, as his feet have grown a whole shoe size in just 3 months!! Hope this phase doesn't last long!
Well, that's it for now. I'll keep you updated on Tray and Ethel as the info comes in.
Take Care and God Bless,
Renee
Wednesday, January 20, 2010 6:45 PM CST
Hello everyone!!
We've been busy as usual.
Ethel came for her first day visit and, I have to say, it went really well. She was very relaxed and happy until just before 2 0'clock and then she was fussy for about 20 minutes, with crying, lots of secretions and such. I gave her some tylenol and some anbesol for her teething (she is 1 and has no teeth - but you can see 4 just starting to surface). She feel asleep a few minutes later in my arms and stayed asleep right through the transfer into her car seat and the transition into the car for her trip home. Overall, not bad. We are having a big meeting with the Pallative care team, our pediatrician, us, the foster parents and the homecare nurse that's been on the case. They are going to lay out all of the cards on the table and we will also lay out our expectations. I feel, maybe wrongly, that they have decided she is too brain damaged to bother supporting her and therefore will allow her to die, regardless if she is ready to or not. I suspect, that with proper support and intervention, she has a heck of a chance. Tomorrow will tell us if she is coming here or not. They (the DSS) may not support us in our goals and therefore may not allow her to come here if they still feel that she is to remain on hospice care. We, in consideration of the other children, can not bring a child here, for the sole purpose of dying. I don't believe that she is ready, or that she is even all that sick, if properly treated. But, again, tomorrow, the doctors will have their chance to defend their current plans and what they share may alter our view.
Trayvon will have his cardiac catheterization on Monday morning. I am a nervous wreck, as I know how hard it is for him to undergo anesthesia. He HATES, HATES, HATES the feeling of going under, no matter what technique they use. I am not going to tell him until Sunday because he will worry himself into a tizzy the minute I tell him. I pray that the results are the same or better than his last cath, but I am prepared for the more likely scenerio of worsening results. His stress test is next month on the 28th (?). This will be a short but sweet test, as I know he won't get far until he has issues. But, we have to play the game NYC wants us to play. Overall, he's doing well though.
Joshua is still doing well. I refuse to write of his seizures or when he's doing well, since every time I do, he has one. Very annoying! He saw endocrinology yesterday and the doctor was very pleased with his growth and development. He only needs to see him one or two more times and we're all done with him!! YEAH!! We also went and had his port accessed in the morning and I did his IVIG infusion last evening. We had some major glitches with the transfer of his meds from their bottles into the pooling bag. The bottles would NOT FLOW into the bag. I was beyond frustrated, after 2 1/2 years of doing my own infusions, I have never had to call a nurse to ask for advice, but I did yesterday. They didn't know what the problem was either! LOL So I had to improvise, and found a way (less than optimal) to get the meds from their bottles and into the bag in a sterile manner. Here's hoping we don't have that problem again!
Marriela has had to be weaned off of the Seroquel that was working so well in the beginning. She was becoming very aggressive and unruly in both school and at home. It was clearly related to the timing of the starting of the meds. Since the wean, she is much more manic and very, very hyper and overly happy (not always a good thing when you have the intensity with it she does). We see her doctor on Friday afternoon and I pray he has another trick up his sleeve. They have started the process of getting her a one on one in school now due to her deteriorating behaviors. Sigh.
Cody started OT in school today and seems to like her. She is the same OT that Marriela had when she was a baby! Cody is just such a joy and such a loving sweet child! It takes my breath away each time he kisses me unsolicited or when he refuses to pick one parent over another, he always says "I love you both the same much. . . I love everyone with lots of love." He really does too. After 5 days of antibiotics, steroids and nebulizers, Cody's cough is finally gone. He had been coughing for so long, I hadn't realized how quiet he is without the cough! LOL I'll be much quicker to intervene now when he starts coughing again.
Sergio is doing very well now. He had a rocky 10 days since his last g/J tube placement. I don't think it was ever in right, since he was irritable since that time. However, yesterday morning he was all swollen and he had 130cc of formula in his g-tube (in his tummy), but he doesn't get ANY food in his tummy, it all goes to his intestines via the J-tube. So, we knew it was out of place. I took him in yesterday to have it replaced again, he HATES that process. But, it's working so much better now and he's so much happier again.
Annette is doing great and has made some nice progess in her PT. She has also successfully mastered doing her own laundry. Yesterday, she and her worker, practiced making a phone call to our local wildlife reserve. Annette wants to learn to snowshoe!! How funny is that. She finally figured out her questions and then made the call all by herself to find out prices, times and if she could do it in a walker. They were perplexed by the walker question and I am suspicious she couldn't do it, but how cool of her to think of that and then make the call to get the info. My baby girl is growing up! LOL
Justin continues to do well. He had fun at his friends house and we are encouraging him to go somewhere this weekend. I think if he could just get some friends, he'd be much happier here and not so homesick for his friends at his old school. Please pray that he finds a few good kids to be comfortable with and finds a way to get together with them.
Well, that's it for now.
Take Care and God Bless,
Renee
Tuesday, January 12, 2010 5:31 PM CST
Ok, here's the low down on our gang, we've been busy!! LOL
Ethel is coming!!! It may be for a period of time, it may be forever, we don't know yet how that will all play out, but she's coming!! We talked, we prayed and we decided, that if we say no. . . she will not survive long enough to find another home. We also feel strongly that she will not stay as sick as she currently is, once we get her the level of care she really needs an the interventions needed to stablize and support her. We will wait to see if she truly is a good "fit" for our family and our needs for long term, but we're happy to have her to at least give her a fair shot in life. I'm so happy to have the weight of the decision of of our shoulders and now we just need to "create" room for her and all of her supplies, that's a challenge! LOL
Trayvon's holtor monitor showed no arrythmias or abnormally slow heart rates, but he is throwing extra beats a great deal of the time. This can be a sign of heart failure, or it can lead to worsening heart failure. The problem is that there is no real way to treat this problem in Trayvon. He has a sick heart and the treatments will be to hard on him. We are moving forward with a cardiac cath ASAP and sending the results to NYC stat. He will also do a treadmill stress test (which both Dr. Attallah and had to laugh at, since we know he has severe excercise intolerance) at the request of the transplant doctor in NY. That too should be scheduled soon. Other than that, we're ordering him some O2 for school now, but he should only need it once in a while, as he's been doing better since the weekend. He's feel good and will NOT like the cath at all.
Cody saw the doctor today for his nasty cough and he's now doing a short burst of steroids (three days). If that doesn't do the trick (though I think it will since he already sounds better after only one dose) we'll give him 5 days of azithromax and see how that works. Other than that, he's doing awesome.
Marriela, is. . . Marriela. LOL She is struggling behavior wise in school now. I just don't know how much more we can do for her support wise and whether there really are any more medication options that don't involve really powerful drugs. I hate to think that that's where we're going, but she can't function like this for long. Neither can Peter or I for that matter. She mentally exhausts you within an hour of arriving home from school. Anyone out there with ANY suggestions, please feel free to share them.
Sergio is doing ok. He didn't get any sicker from his cold, but still has a "nasty" attitude at times of the day. Motrin seems to help. He's making new sounds now which we're all thrilled to hear. I don't know if he will ever "talk", but he will be able to communicate without question.
Justin just got a 100 on both his Algebra midterm as well as his History Day Project in Global Studies!! YEAH!!! He's doing so good. He even as plans to go to a friends house after school on Friday. Very good stuff.
Annette is thrilled that her PT thinks her walk is "improving" due in part to the night brace she is wearing. However, she was very distressed to hear that the PT now wants her to try using a "forward" walker. This scares Nettie a lot and she really feels comfortable in her reverse walker so this will take some talking into. LOL But she is willing to try anything that will help her, so I'm sure she'll try it and then she'll see that she can do it.
Joshua is doing great and I haven't heard anything from Neurology yet. I get so tired of tracking people down all the time!! Ugh. But, I'm not that worried, as he's doing well and I feel like we have enough on our plate right now that I don't need to work on getting a surgery scheduled right now. LOL
Well, that's it for now. Sergio is yelling at me. Peter is doing Tai Chi next to me. Justin is playing Assassins Creed 2 with our 4 year old Cody, giving him pointers (they are not being recieved well by the way LOL). Marriela is finally off in slumber land thanks to her elephant tranquillizers she gets at bed time (just kidding. . . sort of) and Nettie is playing her next 2 months worth of outfits in her room. Joshua and Tray have just finished having a dispute about which "Underworld" movie is "real" (for those of you confused by this as well, NONE OF THEM are. LOL). Just a snapshot of my life. Strange, scary and funny all at once.
Love ya all,
Renee
Saturday, January 9, 2010 7:29 AM CST
Hi everyone,
It's been a little while since I've had the chance to update, as we've been a bit busy here. Here's the run down. . .
Ethel, she gave everyone a real scare over New Years weekend. So much so, that we've had to really step back and ask for a lot more information. Her care at this time is extraordinary, and though we are not fearful of her needs, we worry that it will take away from the other children who also have extraordinary needs. At this time, we've neither committed nor declined to continuing with her placement. I do feel that she has much more potential and should be much more medically stable than she is, with proper care. But, at what expense to the rest of the kids? This has been very hard on Peter and I and we want badly to offer her a loving supportive home, but realize we have 7 kids already that need our undivided attention daily. Only God knows the outcome of this and we leave it up to him right now.
Tray has continued to give us some concerns. He saw cardiology on Wednesday. We had an echo, EKG, chest x-ray and lab work, as well as came home with a 24 hour holtor monitor. His cough persists as do the low sats. He's on O2 right now as I write this for sats of 84. Thus far, the x-ray shows no explanation for the cough. The lab work, likewise, offered no explanation for his issues. . . no infections, no viral signs, etc. Therefore, minus some serious issue on the holtor monitor, it's his heart function itself that is the issue. We are now planning out a cardiac cath, either in NYC or here, to compare to his cath 18 months ago. I suspect, unfortunately, we may be re-embarking upon our journey towards a new heart. Again, this journey is all in God's hands.
Joshua is at Casey's Place this weekend. He had a big seizure the other night that caused him to land right in my lap next to the computer. Let me tell you, that boy is getting bigger and heavier!!! We haven't heard back yet from our neurologist to hear when the fMRI is going to happen and what the neurosurgeon is thinking. I am going to e-mail them this weekend and hopefully will hear back early next week what they are planning.
Marriela does well sometimes and not so well other times. Right now is not a good time. She is mad, irritable, verbally lashes out constantly and just in general, not fun to be around right now. It wears on you, but it wears on her too. It's hard to see her so angry. But, then there are times that you she is very happy and loving and shows her true colors. We love those times and try to soak them up when they happen. Today it also appears that she has a cold coming on that seems to be impacting her behavior as well.
Justin is back and doing well. He is off the x-box and computer games for today due to failure to turn in some homework for which he recieved a zero for. Other than that though, he's doing great.
Nettie is also doing well. I spoke with the team and they are going to repeat Netties labs in 6 weeks. However, there is conflicting reports on which meds are better for CNS penetration and without doing a lumbar puncture, they don't know what her numbers are. We all agree she does not need an LP at this time. We will just sit tight and see what happens. She seems to be doing better and is LOVING the new Wii Fit Plus and has her own character and everything she uses. Very cool.
Sergio, has come down with a cold as of yesterday has had a very poor night and morning thus far. He's congested, needs a lot of suctioning. Not sure where the cold came from, but since Marriela seems to have developed one at the same time, I'm thinking she brought it home from school. I hope this stays just a cold.
Cody continues to have a nasty cough with no real reason. I am going to take him to the doctor next week to see if they have any suggestions. He's been on his Prevacid for over 2 months now and this has not impacted the cough. We also had his meeting and it was determined he qualified for OT once a week in the preschool setting. He had a 16 month delay in his grasping skills which are have a very negative impact upon his writing, cutting and coloring skills. He won't be able to get this service in kindergarten, as they don't provide JUST one service without an identified disability. Therefore, we need to intervene now. I'm happy he's getting the help, not happy he needs it. Oh well, life goes one. LOL
Well, that's all of them right now. We are going to be late for Cody's basketball game if I dont' get moving here!
Take Care and God Bless,
Renee
Wednesday, December 30, 2009 6:41 PM CST
We continue to enjoy the Christmas Season. Today, Justin returned "home" and tonight Peter took Tray, Joshua and Justin to a WWE (Smackdown, Raw, ECW) at the Carrier Dome. The boys were very excited!! I do know Peter was stressed as they got a late start thanks to a vomit session just as they were walking out the door. Tray has had an upper respiratory thing going on for a couple of weeks now. Yesterday he had to spend the day on O2 thanks to some sats in the low 80's (his normal is high 80's to low 90's). He didn't really care, as he just sat and played computer games or PS3 all day. LOL But, the cough often results in him gagging and then. . . well, you can just imagine. I'm watching him closely. Peter took the wheelchair for the first time ever for him (Nettie's old chair) due the amount of walking and his lower sats.
Joshua saw the doctor today due to some worrisome findings in the commode. He's had several severe belly aches the past few days and then yesterday following a BM he showed me a bowl full of blood. It happened two more times today. So he had some blood work drawn, an abdominal x-ray. His diet has changed a bit lately, in that, he's eating about a box of brown n'serve turkey sauges with bbq sauce a day. Peter feels that this may be the cause of the irritation and pain. The doctor didn't know, but didn't feel comfortable taking the "wait and see" route. The x-ray only showed some very mild constipation, nothing that would produce the level of symptoms he has had. The big one will be the stool sample, but I await Joshua's delivery on that one.
Nettie's lab work still had some low levels of virus in it. It went from 74 to 68 in three months. The NP didn't have an explaination, nor did she have any answers to our concerns about her physical and cognitive difficulties. I on the other hand have some ideas. I think she has had virus hiding in her CSF for all these years (the meds are notorious for not penetrating the CSF) and thus eventually, the virus will become immune to the meds and present itself first where its most concentrated, her brain, and then spill into the blood. In time, the amount in the blood will increase as more and more virus replicates. I want her meds changed. Now, this is a very difficult issue, as she has been on all the different classes and most of the most widely known ones. Therefore, she most likely will need to use some that are still in trials or try to use some she's been on before. I requested that her case be presented to the team, though the NP wasn't that "impressed" and doesn't really see my need to be concerned about a "68". Why must everything be a fight. Nettie has always been a 0, so 68 is 68 percent higher than she was 6 months ago!!
I was going to take Annette and Marriela to see Ethel today. However, we recieved word that Ethel is doing poorly right now with some kind of respiratory issue. I feel so helpless, as the foster mom has no help, she is not trained to do things I can and she has no supplies or monitors in the house. So until the baby is in real trouble, there is no way to tell how fast or hard that will happen. I am going to find out in the morning if I can make a quick trip out myself to check on her and see what's going on. I am worried, I hope we're making the right decision. . . the kids will be devestated if she comes and then passes into Christ's arms after they become attached. I just don't know how Joshua and Annette will handle that (or any of them for that matter). Please pray we make the right choices for Ethel and our family. She is just as deserving of a family as any other child, and I can't think of another family out there that could help her like we could, but the reality of her fraility is hitting home.
The rest are doing well. Marriela's doing ok, considering she's on vacation and there is no structure. Tonight she was even playing with her doll and pretending to take it to the hospital and using an old cell phone to call "a boyfriend" and to "text". LOL These are wonderful skills she hasn't shown in over a year, so I'm so happy I witnessed them! She is also thrilled to meet Ethel and speaks so loving of her and has yet to meet her! LOL
Cody and Justin are doing fine. Cody is already a master at the new Wii Resort sword fighting and Justin is loving his new Xbox 360 Call of Duty, Modern Warfare 2.
Sergio is doing great, though he's yelling right now as I ignore him to type this update. LOL He's stayed healthy and continues to learn new things daily.
Now there is just lots of presents, lots of messes, lots of things to try and store now and lots of decorations to put away now.
Till next time,
Take Care and God Bless,
Renee
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Merry Christmas to everyone.
We had a wonderful day. They didn't even wake up until after 7:00am!! Unheard of! I awoke to Sergio laughing in his crib and playing with a toy (we had no nursing last night or tonight so I sleep on the couch), what a sweet sound. Then the rest started to come down.
Marriela is having a very nice response to her new medicine, Seroquil. It's a sedative, but for her, it just brings her down about 20 notches to just shy of 40x our speed vs. 60 - 100x. LOL She was pleasant and patient as she waited to get started. Once we started she had a bit more of an issue staying put and just opening one gift at a time in a calm manner, but in the end, she was thrilled with what she got.
Joshua got his IVIG on Wednesday night. We increased his dose from 40 to 45g which now takes just shy of 4 hours to infuse. He had begun to have more seizures and it definitely corresponded with his weight/height gain and the lack of compensating his IVIG dose. Since his infusion, he's been seizure free. He was sooo happy to see the PS3 under the tree!
Tray has complained on and off today about his left leg feeling "cold" and hurting. He paces when it happens and clearly looks in discomfort, but not to the point of tears. His legs look the same, feel the same and his pulses and sat readings are the same for both legs, so I'm inclined to not worry to much about it. We see his cardiologist next month so we'll follow up with him to see if he has any ideas. He's also coughing a lot and seems to have a cold coming on. Again, just watching him. He had a great day and loved the meal as well as the new Wii games we got.
Cody is still up as I type, watching his new Scooby Doo dvd on the PS3. He's a night owl and loves his sleep ins! LOL Just like his mama. His favorite toy was probably the dinosaur play set and a bowling set my mother got for him.
Nettie was so happy to see a new digital camera for her (especially since she didn't ask for one!! LOL). She had an old one that she just used to the point of no return and had the batteries taped in and such. So I felt she deserved a much nicer one and daddy came through with a pink one to boot! We've noticed that over the past few months, Nettie has slowed down a lot. Her walking is less fluid, she hurts a lot more and asks for Motrin almost daily now for back, knee, shoulder pain. She is in PT, but we're worried that all of the stress her body is under physically, all of these years, is starting to catch up to her. We're wondering if her walker is hurting her more than helping her. It's so hard to tell when a good thing has become a bad thing. . . she wants to be thin soooo bad that to tell her not to walk would be akin to her thinking of herself as a failure. So we're waiting until there is clear cut evidence one way or another that we need to step in and find both the reason why everything is an issue now as well as what needs to change in her walking. I am anxious to get her blood work results as last visit, she had some viral load detected. She has been in the undetectable range for over 7 years!! Other than when we trialed her off of her meds for a 3 month period, she has outstanding viral control on her current meds. To see ANY number is distressing even if the doctor assures me it's just a glitch and will be gone this time around. We'll see. . .
Sergio still has 6 gifts to open, as he was just so NOT into the whole Christmas thing! He was very stressed this morning with all of the changes and the mess everywhere. He sat with Peter and cuddled for almost a half hour before he discovered how fun Marriela's remote control car was! LOL He is doing great though.
Well, the big news is final. . .
Some of you may have caught the new name of our site, My8Angels. Last month we recieved a call from the same county that had Sergio and was told of a little girl in the same foster home Sergio came from. She had just been surrendered by her parents who have many developmental issues and could not comply with the needs of caring for the child at home. I knew about this little girl, as we met her when she was 5 months old one day I took Sergio to visit his old Foster mom. I was "thinking" that one day we would get a call, but actually hadn't thought about it until we got a Christmas card from the foster mom with the baby's picture in it. I called the social worker to see if I could ask how she was doing. . . she is very sick. . . and at that time, was taken by complete surprise when I was asked if we would consider being her new family. She is now 11 months old and has battled for her life since birth. At 3 months she developed bacterial menegitis and has suffered severe brain damage as a result of this terrible infection. She has a feeding tube like Sergio and is vision impaired as well. She is beautiful and has a beautiful sweet smile. She has a determined spirit and refuses to give into what the doctors predicted and still predict for her. They offer no hope of recovery and actually talked the biological parents into signing a DNR just before they surrenedered their rights. She is currently doing some wonderful things and has remained very healthy since a bad pnemonia in October. Peter and I have talked about, thought about it, and planned the what if's out the best we could. I am a strong believer of "everything happens for a reason" as well as "God will never give you more than you can handle." Ethel, yes, that is her name - we're looking at changing it lol, has fought to survive and needs a family. She deserves a family and if we decline, then she will go to a residential pallative care facility. I can't do that. Sergio is thriving with love. I suspect, and pray, Ethel will too. She will also have 20 - 24 hours of nursing care a day, shared with Sergio. She will be homebound, much like Sergio is, to stay away from germs, but she will be loved and supported. So, we are going to be a family of 10 soon. Oh my, that's a lot of laundry!!
Merry CHRISTmas and if I'm not around, Happy New Year!
Love,
Renee
Sunday, December 20, 2009 8:16 AM CST
Only 5 days left!! YIKES!!!
We're doing ok, fit in shopping whenever we can, we also got a nice boost from the Ronald McDonald House in Rochester. They gave us some really nice bags for the kids. This place is AWESOME and has always truly treated us like family when we're there. Joshua and I have been going since he was 6, and have stayed there 13 times in the past 8 years. If you're looking for somewhere to send donations, they are always in need of gift cards to Wegmans, Walmart, etc. to purchase cleaning items, food and linens for the house.
Ok, the kids. . .
Joshua completed his WADA test last Wednesday and did fantastic!! He only received a tiny amount of anesthesia to place the catheter in his groin area and then he was woken up. Once awake, they asked him various questions, asked him to read and to remember specific concrete objects shown to him. Most people (97�f the population) has a language dominate side of the brain, either right or left. Unfortunately for Joshua, and for surgery, Joshua relys on both sides of his brain for memory and language based activities. Now we have to do the Functional MRI (fMRI) to get a clearer picture of exactly how much the right and left sides are doing to determine if surgery is still an option. At this time, they have shared the level of aggressiveness will be greatly reduced, for fear of impacting his language. Joshua never does anything easy.
As for the rest. Cody and Marriela have some persistent coughs that just seem to hang on. Marriela's worse at night, which is always frustrating for everyone. We are also moving forward to much more intensive testing for Marriela to get a better and more concrete diagnosis in regards to her psychiatric needs. Her behaviors are escalating, she is no longer happy again and we're frustrated with the way things are going. I HATE seeing her in a constant state of internal termoil. We saw her pyschotherapist on Friday who specializes in ADHD/Bipolar children. . . he said she is the farthest off the spectrum of ADHD behaviors he's ever seen. He tried to see if he could even get her to slow down her breathing in the session and she was unable to even stop talking, moving, thinking enough to slow her breathing down. He was amazed at her constant need to move from activity to activity and her inability to focus even for more than 20 sec intervals. Now, Peter and I, are less than impressed, we live it every day!!!! What worries us beyond anything, is the fact that she has a biological sibling that needed inpatient psych care by the age of 7 and was in a residential facility by 9. . . I can't even begin to tell you the pain that I feel everytime I think about Marriela and in one of those places, so we're committed to making sure that it doesn't come to that. Thus the need to fully diagnose her to get her the right medication treatment so life can be a fun place to life again for Marriela.
Trayvon is doing awesome as is Nettie and Justin and Sergio. They all got their 5 week progress reports and they are all doing fantastic. Justin has really stepped up to the plate and is pulling in all 85s or higher.
Sergio has been healthy and loves his mobility. We've taken him to some
Christmas parties with the family and thus far, he has remained happy and healthy! He sees respiratory this week as well as interventional radiology for his G/J tube change. Next week he sees the dentist, where we need to seriously discuss something to protect his teeth from his severe teeth grinding. He's the only one with appointments until after the first of the year. . . oh, other than the 3 youngest going in for their second doses of H1N1 shot on the 30th. There is also someone coming out from OMRDD to look at Sergio's bed situation and help us obtain an appropriate and safe bed. Medicaid wants us to get a fully enclosed bed that has soft sides (like the kind you see in hospitals with the clear plastic which pulls up and down or the zip up mesh type sides). Neither of the beds work, because he will stand up and walk around the bed and the soft sides are not secure enough for him to balance against and he will fall into the railings and head/foot boards. He needs a twin size bed with solid sides and the ability to have quick, unobstructed access to reach him if necessary in an emergency. Last night he had his feeding tube completely wrapped around his throat and was very distressed, the nurse could barely reach him and I had to come down and help her get him untangled quickly. He's in a large twin size "crib" that was loaned to us, but the sides don't go down, so you have to stand on a stool to get to him when he's on the far side of the bed. Not safe.
Other than that, nothing new is going on. I may have some news to share next week that will be big for our family. . . good big, but definatly big ~ the suspense is going to kill you LOL.
I'll keep you up to date next week!
Love,
Renee
Merry Christmas, May Christ's Peace bless this Holiday Season for all.
Friday, December 11, 2009 7:10 PM CST
Update:
Justin's biopsies are "normal". No further treatment needed, we'll just follow up every 6 months for a full body check. He's relieved, I think was more nervous than he let on, but now that they're normal, he's mad they put two "dents" in his head for nothing. LOL
Sergio did in fact, have an ear infection, but it was still very early. We're going to try letting him have just some ear drops and motrin and see if he can fight this one on his own, but I have a script to fill over the weekend if it gets worse. I'm sure I'll be filling it.
We heard back from the neurosurgeon and they have decided that they DO want Joshua to have the WADA test first and then the fMRI at a later date. The WADA will give them the information they need to determine if surgery is even a possibility. So we're going out next week on the 16th for the test. I was so hoping to not have to think about any surgeries before the new year, but alas, it's not meant to be.
Well, that's all, just a few new things to report.
Take Care and God Bless,
Renee
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Hi everyone,
Joshua finally woke up. Apparently he decided to wake up in the middle of the CT scanner, so they had to sedate him more towards the end, then he bit down on the breathing tube and began to get frothy so they did a quick bronchoscopy to make sure he didn't aspirate anything. He was fine and woke up asking for food LOL. I don't know anything about the results though.
Yesterday's visit with the immunologist revealed what I had thought, Sergio has an immune problem. He made virtually no response to his vaccination. He will have one more test in a month, but no one is convinced that anything will be that improved. In all liklihood, we'll have to discuss IVIG for Sergio as well. I don't know exactly how we would do his, since he has NO subcutaneous fat to use for the SubQ infusions, and he has terrible veins for IVs. I'm thinking that we may have to look at a port for him as well, like Joshua. We'll see what the docs think.
Joshua's trip to Rochester was good and fast. We met with the doctor who is going to do the WADA test and he feels like it is in Joshua's best interest to try duing a Functional MRI first instead of the WADA. The same information can be obtained, but without the sedation and trouble of waking him and everything. However, he has to stay still in the machine for upto 2 hours and that will be a big challange for him. However, he really wants to try the fMRI to see if he can do it. I'm all for it. We should hear from the soon as to the date of the test.
I'm still trying to track down the results of Justin's biopsies he had last month, it boogles my mind that no one takes the time follow up on anything anymore, it's all the parents job now. That's just wrong. Today someone is going to get an ear full if I don't get the info I want.
Sergio was up crying most of the night and the dumb night nurse didn't think to give him any motrin. My day nurse had to come in and tell her to give him motrin. I suspect he has ear infection so I'm calling the doctor to see if they can fit him in today or tomorrow morning. My day nurse was furious that she had let him suffer in pain, as I was too. We are dumbfounded that there is so little common sense in the world of medicine. That should have been a given, child crying, hitting himself and inconsolable, equals pain. . . nope. He's just being bad according to the night nurse. If I could, I would fire her, but I can't otherwise I'll have no one for my nights. My other night nurse (the one we love) just had a baby boy, so she's out for a few weeks to a month. Sigh. LOL
Other than that, we're all doing well. Need to get moving on my Christmas shopping sometime in the near future!!! LOL
Well, take care and God Bless,
Renee
Wednesday, December 9, 2009 1:07 PM CST
Hi there,
Sitting in the surgical waiting room, waiting for Joshua to come out of his sedated CT mylogram. We're looking to see if he's done any nerve damage in his lower spine that would account for his decreased sensation, urinary retention issues and increased tone in his feet. We had to be here at 8:45am and the procedure was suppose to start at 10:15am, but there was an emergency before him, so he had to wait until 1:15!! I thought I was going to die from starvation. I don't understand how he stays so calm and never asks "why me" or "why do we have to do all of these stupid tests", he's just sweet and compliant. I hate that he never questions any of it.
Tomorrow I have an appointment with immunology for Sergio to go over the results of his last set of labs and his responses to his immunization, as well as get another immunization. Then I have to take Joshua out to Rochester to meet with the team that will be sedating him for the WADA test in a week or so. We don't have a concrete date yet for that test. But, tomorrow the anesthesia team will go over how they are going to sedate him, wake him up, sedate him and then wake him up again for the procedure. The trick is getting him to wake up in a timely manner without making him to groggy to do the verbal parts of the test. It's going to be tricky and this will be their first time doing it this way. Why are we always the first????????
Rest of the gang is doing well. Sergio is cranky today and needed some motrin for some pain, but since he can't tell us where the pain is, we just guess or, like today, never figure it out. I hope he's not getting sick.
Our tree and decorations are up and looking so nice. I love decorating for Christmas. Shopping is less than stellar though, but we have gotten some things. I'm sure we'll be doing some "sprint" shopping a day or two before Christmas LOL.
Uhhhhhh, where are they???!!! I hate waiting for my kids to wake up from anesthesia.
I'll update up with any findings.
Take care and God Bless,
Renee
Wednesday, December 2, 2009 7:36 PM CST
Hi again, didn't expect me so soon did you! LOL
We heard today that Joshua needs to have the WADA test sooner than later due to the team that does these complicated types of cases is leaving at the end of December. His neurologist would really like us to look at doing it sooner than later so he can work with the people he trusts to conduct this test well. Joshua also decided to scare his poor Physical therapists last night at PT. He had just finished using the stationary bike and went straight back. Thank God he had his helmet on because it punched a big hole right in the wall! It just makes me more resolved to go ahead to with surgery to try and stop these dang seizures!
The rest continue to do well. I had to pick Marriela up today from her last karate class because she missed me so much. She has so much anxiety and this is the thing that needs to be addressed more than anything else at this time. Peter is going to go to her next psychiatry appointment to express our concerns, as my concerns are falling on deaf ears.
Sergio is doing great now and even licked a lollipop today! This is huge for him, since he hates anything related to food anywhere near his face. His OT holds his "bumble ball" hostage until he attempts any kind of "taste" of the lollipop and today he put it right inside his mouth. Very cool.
This is a short update, just wanted to let you know about Joshua's testing.
Take Care and God bless,
Renee
Monday, November 30, 2009 10:41 AM CST
Hello again!!
It's a wet and cold day here in Liverpool, NY and we may see our fist signs of snow by evening (though it won't stick, still to warm).
Thanksgiving was wonderful and I'm so thankful that I have the large family that I do. . .as crazy as they make me sometimes, the laughter surpasses any time or day! We had 2 HUGE turkeys with all of the trimmings, which translate into lots of leftovers for me. Yummmm.
The kids are all doing well now.
Sergio gave us a bit of a run for our money last week and into Saturday. He was started on Tamiflu, Zithromax and Steroids on Wednesday of last week. By the end of the week things were clearly not getting better so I called the on-call pulmonologist again. This time we boosted his steroids by A LOT and added a 6 day weaning period as well as added back his high dose Pulmicort and increased his VEST treatments to 20 minutes twice a day. By Sunday he was like a new kid and needed no extra oxygen at all day or night. . . vs. Saturday when he needed all day and night. He also had his first visit to meet the staff at Casey's Place, a medical respite facility for medically fragile children. He can attend weekends once his paperwork is completed by the home and through Medicaid. I won't do it often, but it's nice to know that if we need to go out of town, there is a place he can go safely. It's the same place Nettie and Joshua go to for weekends and afterschool programs.
Cody is doing well and his cough is virtually gone as well as his stomach aches. So the reflux was definately an issue. I also noticed today that the big dark bags under his eyes are gone as well, so I am making the assumption that the reflux was also affecting his sinus causing the puffiness. Amazing what one little dissolvable tablet a night can do for a little boy. Thank God for medications.
Joshua had a big seizure yesterday in the Spaghetti Warehouse after lunch. We had forgotten his Klonopin and he missed his afternoon dose by over an hour. So we now know that without that med on board, he will continue to seize. That's both frustrating and comforting in that we know now, he is competely med dependent and which med is the med doing the most for him at this time. If he has the surgery, we know that this med can be used again if necessary to bring back seizure control if needed post surgery.
Justin has finished (well almost) his 4 page research paper for Global History. Let me tell you, I didn't enjoy 9th grade the first time around and I'm not liking it any better the second time around either. Plus, I swear, we never had to learn stuff this hard!!! LOL So far, he's excelling this semester. Today after school he has a dentist appointment. Since he despises brushing his teeth (oh how I dislike the teenage attitude! LOL) I'm sure it won't be a picture perfet visit.
Annette is doing great and has been doing her own laundry for the past 2 weeks with her worker. She has also begun working on creating an address book of important numbers for when she's living away from home. She loves working on these skills and takes them so seriously. We've been building a list of items she needs to master as an independent adult. Some will take only a few times to learn, others will be a work in the making for a long time, but we need to start somewhere!
Marriela is doing well. We have not yet started the meds in the afternoon. She will start today at school and we'll see if there is any improvement in her afternoon behavior. She has been having more asthma issues so we're doing a Pulmicort neb each night at bedtime as well. She has a Christmas list a mile long and requests us to call the "Chinese People" daily to bring her the toys they make. She had a snowglobe we bought her from the Dollar Store, she asked me to read the bottom on the way home, it said "made in China". That night, she broke the snowglobe accidently. She then asked us to call the Chinese people to have them make her a new one and send it to her. 2 days later a new snowglobe was in the mailbox. Then she smartened up and asked us to read the bottom of all of her toys. Most said "made in China" so now she thinks we can just call the Chinese People and toys will magically appear in our mail box. Good idea went awry. Sigh. LOL
Trayvon continues to do well with no additional concerns. His cough is gone, and with a serious curtail in his sodium intake, he is much less puffy as well. He seems to look and feel very well. Though the night we walked the Lights on the Lake (well, we walked for about a 1/2 hour) his sats dropped to 87 and took a bit to climb back up. Otherwise though, he appears to be holding his own and I have had no more red flags since last month.
Well, that's it for now. Peter and I are trying to do some Christmas shopping, but it's hard to fit in time to go out and shop for all of these kids. Marriela, Cody and Sergio are so easy, but the older ones are not so easy. They haven't actually "said" what they want so we're left to guessing. I have to get them to sit down and make out a Santa list so I can see what they want! We're getting our tree this coming weekend as well as putting up our decorations.
Til next time,
Take Care and God Bless,
Renee
Sunday, November 22, 2009 7:48 PM CST
Hi everyone!
Were all rolling along here towards Thanksgiving and Christmas. We're going to have a houseful on Thanksgiving with Peter's sister and her family coming, as well as my sister and mom and Peter's dad. That's 16 people. Smaller than past years, but more than the last few, so it will be nice to have a big dinner this year. We have a lot to be so very thankful for and family is one of the huge ones!
The kids are all doing well for the most part.
Since my last update, Justin had two abnormal moles removed from his scalp. He was so brave and never said a word when she shot his head up with novacain and shaved 2 inch circles off of his head. We should have his results right after Thanksgiving. I'm sure they're fine, but it's better to have them off than not. He seems no worse for the wear. In addition, he had a grade adjustment and overall he had an 84 average for the semester. He can do much, much better, he's very smart. . . however, this was superior to his previous three years combined so we're very pleased with the improvement.
Joshua has had 2 seizures since the last update. Last night he had one on the couch with Peter that lasted a bit longer than a minute. The other was a few days ago on the school bus, but it was a simple cheek puffing one, so he just went on to school after checking him out. We have agreed to go ahead with the WADA test after the first of the year. Otherwise he's doing very well.
Nettie is getting her IVIG right now. She has a tummy ache tonight. I think it was the nachos at the movies she and her SU students went to see today. It seems that each time she has the nachos she has a bad tummy ache. I broke the sad news to her, that maybe, just maybe, the nachos weren't worth the discomfort she felt for hours afterwards. She hesitantly agreed. We'll have to see if she remembers her current discomfort the next time she is faced with nachos LOL.
Tray has continued to do very well. No additional concerns have come up since the last update. He still wakes up swollen most mornings, but his breathing and sats are still doing ok. He's doing great at school and his violin teacher said he's doing very well suprisingly!! We thought he would have a very hard time with the pressure needed to push down the strings but he is doing as well as the other first year violin kids. Way to go Tray!!!
Cody went to see the doc on Friday. He has an ear infection and has had a very wet, persistant cough. He's now on antibiotics and we have restarted his Prevacid to see if the cough moves on. He has also started basketball and seems to really like playing. He also had his visit with the pshychologist as part of his preschool evaluation. He did fantastic on all of the non-verbal skills, in fact, she felt he was extremely high in some areas. He struggled with the verbal tasks but we know that he's much better at figuring things out rather than talking them out. So I was not surprised at the findings. We'll have the full report in a week or so after the teacher, OT, and speech teacher see him. I'm sure he's going to do fine and already knows 9 letters of his alphabet by sight and can figure out the rest if he does the alphabet and points at the letters. He knows his full name as well as his full address. LOL
Marriela is still struggling, as are we. She just has soooo much energy and lack of focus that it's virtually impossible for her to just "sit and play" and needs a great, great deal of one to one time to keep her from tantruming. We have increased her Celexa by 5mg and will pair it with her Abilify earlier in the afternoon to see if that helps with our afterschool behavior challenges. On another note, she had her first sleepover and other than needing me to run over and rub her back to help her get to sleep and set her up on the floor all comfy left her there for the night. She did wake up a few times (it was at Peter's sister's house) and wandered, but was easily redirected to her bed. She was so happy when she woke up and she was still at her cousins house! YEAH for Marriela! I introduced her to the art of Open Houses. We went to three today and she LOVED them. Her big thing was to "check out" their closets and see what kind of pets they have. LOL I'm sure there will be many more Open Houses in my future.
Sergio has a wet and yucky cough. We're trying a variety of different things to see if we can keep him off of the oral steroids. He has yet to begin producing his own cortisol according to his last tests, and each time he takes oral steroids, we suppress his adrenal glands more and more. But other than this little glitch, he's doing great right now. He walks EVERYWHERE now and almost never crawls anymore. He has lots of things to explore now and finds doing laps around the dining room and living room a fun activity still LOL.
Well, that's it for now. Happy Thanksgiving!!!!!
Love and Blessings,
Renee
Saturday, November 14, 2009 5:48 PM CST
Busy but good day.
Trayvon had his 11th birthday party today! He was still sick last weekend on his real birthday so we postponed until today. He and two friends went to see the new Christmas Carol in 3D and he LOVED it!! I can't believe my little "Tray Tray" is 11 years old!! Dear Lord, where does the time go? He is doing well. He woke up with severe facial puffiness yesterday, but was looking much better by the end of the day, and his sats were ok for him. Again, we'll just keep "watching" to see where he's going.
Joshua and Sergio and I went to Rochester on Thursday to see the neurologist. Sergio was easy, no changes, he looks good and we'll just touch base via e-mail or phone if we need to change anything. Dr. Henry presented the findings of the surgery team. They do, in fact, feel they can help Joshua with the removal of the remainder of his right frontal lobe. At this time, the majority of the electrial "storms" are originating in this area and then spreading to the rest of the brain. With the full removal of all abnormal tissue, they feel that they will have a very positive impact on the drop seizures. The next step is a test called the WADA test. We will have to be creative with how it is done, because they thread a catheter through the femoral artery up and into the brain where they inject a powerful sedative. This will put the right side of his brain to "sleep" for a period of time. During this time, they will ask Joshua many questions to determine which side his speech is dominate on. If it's his right side, then surgery is no longer an option. If he is able to answer the questions, then the test is negative and we'll have to decide when and if to do the surgery. There are never any guarentees, we don't know what or if there will be any resulting losses of skills (especailly in the area of reasoning, impulse control and organization - executive functioning skills). It may not be a permanent solution, as it's possible the orgin of seizures could migrate to another area of his brain. He will probably still need to take meds his whole life. BUT, will we stop the terrible drop seizures that make it necessary for him to wear a helmet, have to have an adult by his side at all times, necessitates doors at the tops of stairs, keeps us from letting him climb anything taller than a few feet and from participating in group activities where he could get run over if he went down. They alter every aspect of his life, showers are a constant danger, swimming is a nail biting experience, standing on stairs, decks, ledges and the such are wrought with fear on our part. So, would it be worth to have a surgery that "may" diminish significantly the risk of these seizures, but "may" result in impulsive behaviors, and still maintain the need for meds that depress his cognitive skills. . . I don't know. Peter and I talk about it all the time and there is no right or wrong answer. I have all the confidence in the world though that God will guide us when the time is right.
Justin is with his dad this weekend. His report card came today and we were disappointed in two of his classes. He will be sad to learn that his computer privledges have been reduced considerably until the 5 week progress reports. Sigh. He did better however, than he has in the past two years so I will definately look at the positives as well. I am also going to call the guidance counselor to be sure that the transfer grade he came with from his old school was the correct on. On the sheet they gave me, he had a 68 in English, however, after talking with the English teacher at his old school, the grade was suppose to have been changed to an 85. . . I don't know if that grade was in fact, transferred as it was suppose to be. For Justin's sake, I hope so! LOL
Nettie is doing very well. She is getting her legs "taped" every week in PT to try and manipulate her hips and feet into a more natural alingment when she walks. It's a difficult process and the tape is painful, but she never declines it, nor complains. . .just asks for her motrin and rests them as she needs too. She is the perfect patient!! She also recived an awesome report card and a fantastic report by her job coach at her Project HELP job. YEAH Nettie!
Marriela is doing well. She has been going with me to different appointments and such to keep her busy and her behavior has been fantastic. We really only have a hard time right after school or when she has more than 1/2 hour of down time. We saw her psychologist yesterday and we're trying a new afterschool routine to see if we can alter her behavior. Next week I'm taking her to work on her "play skills" which are virtually non-existent. If it's not physical activity, she can't relate. She has no "imaginative play" at all. This is what makes it so hard for her to have down time, toys have no meaning to her. One step at a time.
Cody is doing well. I had his parent teacher conference and was very frustrated and angry by the end. Not at the teachers, but at the fact that he was the lowest scoring child in the class. Now, you have to realize, he's the only developmentally "normal" child in the house (minus Justin who's 14) so to me, he's a freakin' genius!! But apparently on the screening, he couldn't answer his name. . . he said "Cody Bear". Now, that's what we call him, so why is that wrong??? I assure you, anyone that asks him now, gets his whole name right! LOL He also didn't know his address (who at 3 does?!) but, rest assured, he now has down his town and state and will have his street by the end of the weekend. They also said he needs to work on his letter recognition, so he has new alphabet puzzles, magnets and I've made worksheets to review his name, spelling and the names of letters. He's going to kick butt on the next screening in December!! Tell me my son is behind the rest. . . I don't think so! However, he is ahead of the rest of his class by leaps and bounds in his self-help skills and social skills. That's my boy!
Sergio is doing well. No news from the awful smelly diaper I dropped off. But his appointment to Immunology revealed a mild rash on his torso that's consistent with rotavirus AGAIN! That's 5 times in 6 months. UGH! He's not tolerated his feeds at night very well and has had to have them turned down often to reduce the swelling and gas. While at Immunology he had labs drawn to see if he made any antibodies to his vaccine. We also re-vaccinated him with the pneumovax and we'll go back in 4 more weeks for the results of these tests and have a new set of titers drawn. Otherwise, he's up, walking and being a very good boy!
Monday, Justin goes to Dermatology to have a mole on his head looked at, since the derm in his old town felt strongly that it needed to come off asap. He then has to go for his physical on Tuesday and get his H1N1 shot, then on Wednesday, the rest are going for their shots. I'm so happy Sergio is going to finally get his shot since I've seen how hard the cough hit Marriela and Tray, Sergio's little lungs couldn't handle that type of insult!
Tomorrow we're off to see Peter's dad, as it's the anniversary of his mom's passing. We're going to clean up her grave site and bring her some nice fall flowers.
I miss Peter's mom and my dad so much.
Well, till next time!
Take Care and God Bless,
Renee
Tuesday, November 10, 2009 9:16 PM CST
Hi everyone,
First and foremost: Prayers and heartfelt gratitude to all of our servicemen and women. I honestly feel compelled to personally thank every uniformed service person I see. I hope they know how much they are loved and appreciated, especially after the terrible events of recent.
What's up? We're finally in the flu free zone. Tamiflu is done, fevers are gone, coughs have abated and everyone is back at school. . . thank Heaven!
Yesterday we went to GI and Developmental Peds with Sergio. The GI was very impressed with Sergio's progress. He recommended that we .increase his feeds to 1000 calories a day now, to be sure Sergio gets his full dose of fluids as well as calories. However, this morning he had some significant dumping syndrome symptoms. He was very shaky, his glucose was only 59, his heart rate was very high (155 ) and had a very large, foul smelling stool. I dropped off the diaper at the doctors to rule out an infection like c-diff. Tomorrow we will reduce his feeds by half before removing him from the pump to see if that helps with the hypoglycemia. Other than that though, the big news is. . . SERGIO IS WALKING! I mean, honest to God walking. He can stand up independently and cruise all around the house! It's so cute to watch. But, now that he has discovered the benefits of walking, he's got us running all over the place trying to keep up with him! I will get a video on youtube.com tomorrow.
We also saw the dev. ped and loved our visit. She feels strongly that his primary hinderance at this time in the cognitive domain is his vision. She gave me a lot of information to research and try with him as well as suggested we try to get a new teacher of the vision impaired. We need one that will work on decreasing his "blindisms" such as his head slapping, headbanging and self-induced gagging. I called the school district today and they are looking into the other options out there.
Tray also saw Cardiology. I have had some concerns with some subtle changes in his breathing and increased fluid retention. The option of adding some more diuretics or increasing his Revatio was offered, but I declined. It's not that I want to jump to change anything or add more meds. But, I wanted to be sure we're all aware that there are changes and with Trayvon, a seemingly subtle change could be the catalyst for a dramatic spiral downhill if missed. So I am hypervigilant in monitoring any changes, but not one to jump to adding or subtracting therapies based upon these little changes. It is possible we're looking at a return trip to NYC for another cardiac cath to determine if his heart is still the same or he has lost some more function. The reality is this heart isn't going to last Tray more than a few years, we just don't know the "when" or "where". All we can do is try to be proactive and be ready to list him for transplant at the first signs of trouble. We'll go back in one month for much closer follow-up.
Joshua is getting his IVIG infusion as I type. His access went great and we are much more comfortable with the nurse, John. Up until last month, Joshua would only let Missy do his port, and then he would let Karen, but only if Missy wasn't there. However, both Karen and Missy have been out a lot lately and John has been the one to fill in. Other than the one time the port wouldn't draw back, John has hit it on the first try and Joshua is comfortable at this time to let him do it (until Missy comes back. . . LOL). We see neurology on Thrusday with Sergio. He has been seizure free for almost 2 months now, with only the one seizure about 2 weeks ago (I wonder now if he missed his meds at school that day). I hope they have a surgical plan to offer us, but right now, we're happy where we are with him.
Cody is doing great. He hurt his leg last night while we were out on "date night" and it kept him awake for a long time as well as woke him up crying twice. I hate to say it, but after being a cancer mom, my mind kept going to dark places. We've heard so many times, about kids who fall and then the pain is more than the fall should have been, only to have it be cancer. I was relieved that he had no more syptoms or complaints this morning when he awoke and there was no signs or symptoms of injury at all. Phew.
Annette is doing well as well. She went to the laundromat with her worker today and did a great job. She loves doing her laundry and works on her homework while it's washing. This weekend, she's going to do some of my grocery shopping for me. LOL. My personal assistant.
Marriela had a wonderful parent teacher conference. She has adjusted well to her new school. I am very concerned about the lack of academic progress she has made since the end of kindergarten. She continues to only be able to write her first name, count to 20 and has NO idea at all about adding or subtracting. I was working on her "zeros" over the weekend and when asked what's 0 0, her response was "7" sigh. This was after multiple examples AND using counters. Just not there. So I asked them to "retest" her to be sure we haven't missed something important she needs to have more success in school. Peter and I are meeting with the psychologist to get some more strategies to deal with her demanding behaviors. She is trying, as are we.
Justin is doing very well. He is looking forward to his weekend away with his dad the Friday. It's also report card day, so I hope, for his sake, he has a great report card. He has been giving his mom and Peter and I suggestions for Christmas and his birthday. Boy are teens today expensive creatures!!
Well, that's it for now. Tomorrow, ID, then neurology on Thursday. Cody also has a dentist appointment on Thursday to have a "pit" in his molar filled and sealed to be sure it doesn't turn into a cavity. Next week, Justin sees dermatology and has his physical and the rest of the kids get their H1N1 shots. Busy, busy.
Till next time, take Care and God Bless,
Renee
Thursday, November 5, 2009 8:19 AM CST
It's flu central here. Cody was on "fire" for 2 days straight, he finally cooled down at around 1am this morning. Now the stomach and respiratory syptoms have begun. Nettie came home yesterday with a fever, aches, chills and a very nasty cough (her chest hurts she says). Tray is already on Tamiflu due to his 3 day run of fevers and nasty cough. So now, they are all on Tamiflu except Marriela. She has already had the fever, cough and chills, so she is past the flu (probably the typhoid Mary of the bunch lol). Justin, Joshua and Sergio started the meds to prevent the flu. Tray, Annette and Cody are on it to treat the flu. Nebs are running pretty much all the time, between Tray, Joshua (who has a bad cough, but no fever), Nettie, Sergio, Marriela and Cody. Cody was running a 104 degree temp under his arm!! I was worried very much that he would need fluids, but thus far, since cooling down, he's been drinking.
Other than the flu, all is normal here. LOL I'm praying that I don't get the flu, since I can't find the shot and the doctor won't write for the Tamiflu for adults without symptoms. Sigh.
Sergio is seeing GI and developmental peds on Monday, and Tray is seeing cardiology on Monday as well. Then on Wednesday, Sergio is going back to Immunology to have his titers drawn to see if he produced any antibodies to his immunization and will get his H1N1 vaccine as well as another booster for the Prevnar. Then in one more month we go back, redraw the labs again and we'll know if he needs IVIG or if his own immune system will kick in with the exta help.
Well, that's it for now.
Take Care and God Bless,
Renee
Sunday, November 1, 2009 7:18 PM CST
Happy Belated Halloween. Despite the fevers, asthma and tummy problems, we made it out for about an hour and got a good size stash of candy to last us a while. (yes, you read that, US. . . Sergio's bag is the slush fund that curbs mommy and daddy's chocolate/sugar needs).
We took Justin out for his birthday dinner today at Spaghetti Warehouse. His birthday isn't actually until the 14th, but next week is Trayvon's birthday and the following week, Justin's dad is picking him up for a nice weekend with his sisters (half-sisters on his dad's side). He also had a very nice visit with his mom this past Saturday and saw the movie Paranormal Activity. He was scared (but now he'll tell you it wasn't scary and it was stupid. . . but he was scared! LOL).
Joshua is doing well now. I had to pick him up from school on Friday on my way to the doctors with Sergio and Marriela. He was just super tired and had been in the bathroom several times. So I added him on to the doctors list. She said his tummy was very gurgly so anticipate more visits to the toilet to come. However, that night, he was screaming in pain. He said the gas pressure was unbearable. I felt so bad! He didn't fall asleep until 4 am. But, the next morning he was feeling great and had no more issues.
Trayvon started with a bad cough last night and we started the nebs today. His sats are still in the normal range for him (88 - 90) but, his heart rate is higher than normal and now he's running a fever. I'm just keeping a close eye on him right now, but most likely he'll need some lab work (he has no spleen) to rule out any other issues. He was cold all day and so I'm not sure when he actually started with the fever. . . he went to Church, the library, the restaurant. . . we probably just spread the flu to umpteen people! UGH!!! I was sad to think that, since I have been trying hard not to have my kids exposed to it.
Marriela is finally fever free, but her asthma is really acting up and now her nose is a mess. She threw up during a bad attack this afternoon. I'm praying that the nebs we're doing will keep her going without an ER trip.
Cody has been great!
Nettie went to Casey's Place for the weekend and saw SU play (and lose) and then they went to see the Micheal Jackson movie. She was in HEAVEN!! She LOVES MJ. Great weekend for her. She is getting her IVIG as I write.
Sergio is doing much better. Though he never ran a fever, something was definately off and we're pretty sure he had a lot of the stomach pain that Joshua experienced. He slept A LOT on Friday, and then seemed more like his normal self on Saturday. His nurse was also out on Friday so here's hoping we're finally getting better and once Tray is over it, that's it!
Well, take care and God Bless,
Renee
Saturday, October 24, 2009 6:33 PM CDT
Well, I never should have written it. . . Joshua ended his wonderful seizure free run last night at 7:00pm. Thank God he was sitting, and though it was a strong and powerful one, it was short. So we are back on hypervigilance again. We are hoping that he was just under the weather yesterday (he called home and said that his nose was very runny and needed to come home. . . no, he didn't come home LOL). So far, tonight, nothing.
Sergio is doing ok. He is irritable, and needing a bit more O2 at night and naps, but overall, he is doing good. I think the quick increase in his steroids were a good thing.
Justin is out tonight with Peter's sister's husband and daughters at a haunted hay ride. I like seeing him get out, he also seems to have a girlfriend already. LOL OYE!
Tray is pushing hard to let me be a "walker" for the trip home from school. He has been riding the bus to and from school daily, but has always wanted to walk home. I finally had to give him an ultimatum, walk home and forfeit gym and recess. His heart is to fragile to let him do all that he "thinks" he can do, and I don't want to tip the scale towards overdoing it and then him not being able to do anything again. It's a delicate balance.
We went to the psychologist to go over some of Marriela's difficulties. He is able to make so much sense of her behaviors and we always feel so sad that we ask so much of her when she just doesn't have the ability to control much of what she says and does. It's not that he feels she is "incapable" of ever being able to handle her frustration, it's just that right now, her emotional age is like that of a one year old and she needs all of the same support and emotional comfort that a one year old needs. As time moves on, so will her ability to manage more and more of her behaviors. She has come so far and we have to remind ourselves of that, rather than focus on the difficult times. I'm so happy to be in this therapy!!
Nettie isn't feel well today, but she thinks its the blah weather. I did her IVIG today so hopefully if she's getting sick, this will help nip it in the bud. She is all set to be "Missy Elliot" for Halloween. She is sooo cute!!
Cody is doing great! He went to the school dance with Marriela and Trayvon last night and had a fantastic time dancing with his friends from school. He is so independent and easy going and so NOT like the others that it's hard for us to just let him be a kid. LOL
Well, that's it for now.
Take Care and God Bless,
Renee
Thursday, October 22, 2009 7:56 PM CDT
Hi everyone, how's it going?
We're all doing well!
Took four to the dentist today. Joshua - doing very well, no cavities, but a new spot to keep a close eye on, return in 3 months (that's his norm, every three months). Cody - was born with "pits" in his baby teeth and one of those "pits" has developed into a superficial cavity, we go back in two weeks to have it sanded lightly and filled with sealant, otherwise, looks great. Marriela - has perfect teeth! Tayvon - HATES having his teeth scraped, but once that was over, did great and has no issues, just needs to brush better. Phew. Only one small cavity out of 4 kids, I'll take it! LOL
Nettie and Joshua saw the rehab/physical med doctor to review their therapies and their equipment needs. Nettie will meet with the wheelchair clinic next Thursday to get the leg rest on her powerchair fixed and to order her a new manual chair for us to use with our car, which can't transport the heavy powerchair. Joshua had some new issues arise (as he always does!) and now there is some concern he may have a lower spine issue resulting in increased tone, decreased reflexes and his back pain. So they are going to order him a CT myelogram since he can't have an MRI due to his vagal nerve stimulator implant. I am anxious to get this test done to determine if there is any concern we need to address. It's hypothesized that he may have injured a disk when he fell on his back over and over during his seizures. Speaking of seizures, I can write it, but can't speak it, he hasn't had a seizure of any sort in over 2 weeks!!! Ya Hoo!!
Tray is doing well. He is now staying after school for two different buddy programs. One is for academics to help kids improve their homework skills and increase their reading levels. The other is to improve his violin playing skills. He earned his bow today and is thrilled to now actually be able to "play" the violin.
Cody is doing very well, sniffly, but otherwise great.
Sergio is up and down. He is getting sick, but we're fighting back with increased steroids, extra VEST treatments and lots of neb treatments. So far, so good. He needs O2 during sleep and for a few hours after waking up, but otherwise, seems to be himself most of the day.
Marriela is doing ok. Her afterschool behavior is a real challange right now and we are meeting with her psychologist to discuss a behavior plan to address it. We are frustrated that she can hold it together so well at school, but as soon as she gets home, she's crying, screaming, demanding things and banging her head until she gets her way. Sigh. Here's hoping that the doctor has some suggestions for us!!
Justin seems to being doing well. He has now finished 2 weeks of school and has gotten good grades on the things I've seen him bring home. He also had some friends come over today to walk to the library with him for a while. I'm so happy, as he told his mom and us that he is eating all alone at school on B and D days. He's also going to look into joining the computer club. Overall, the transition thus far has been great.
Well, that's it for us right now. We're going to Elmira this weekend, as Peter has been invited to be the "guest captain" of his alma mater, South Side High School. Should be fun, if the weather cooperates. Only Sergio isn't going, too cold for him even when it's warm! LOL
Take Care and God Bless,
Renee
Thursday, October 15, 2009 8:39 PM CDT
Hi everyone!
Well, the rain has finally stopped and I have to say it has helped my mood tremendously!
All is going well.
I had an IEP mgt with Joshua's team today and they had many good things to report since the school year has started. I have agreed to trial, again, removing the sign language interpreter for 5 weeks at the start of the next marking period. This should be the final time, once and for all to determine if, in fact, he needs or doesn't need the interpreter services. We also agreed that I would designate his teacher as a "close personal friend" which will allow her to be able to administer his DiaStat should he, God forbid, need it out on a field trip. All in all he is doing very well. This weekend he is going to Casey's Place. He also had Brain Tumor Clinic this week where we had nothing but good news as well. Technically, he can move to every other year MRI's, but I made it very clear, that this would probably not work with me and I'm sure that every year will be in "my" best interest for my sanity. The doctor laughed and said she would be happy to make it yearly if I wanted it to be. :-) I was happy.
Sergio saw pulmonolgy and endocrinology this week and both had great things to say as well. For pulmonary, we stopped his singulair and decreased the strength of his pulmicort back to the .5 mg twice daily. If we can just keep him from getting the flu, he should do great! Endo was happy with Sergio overall, though he is still VERY small and no where near the growth curve. So we will increase his calories by 100 per day to see if we can't get a bit more growth and weight gain. I also have to take him for some lab work to see if his adrenal gland has begun to function at all. We pray that his adrenal gland will eventually kick in, as this will make it much easier for him to fight off infections and handle stress without the need for additional steroids.
Nettie recieved the flumist instead of the shot much to my dismay. This is why I hate not being with her for her appointments. I don't know why they gave a child with an immune deficiency the live flu vaccine rather than the dead shot, I just can't imagine. So today she is very achy and her nose is very raw inside (the side of the medication). I have to call the clinic tomorrow to ask them their logic.
Marriela is doing well and we are now trying some new suggestions from the psychologist to help our evening routine. Tonight she had girl scouts and I thought I was going to go crazy during those 3 hours between when she got home and the time for girl scouts!!!! She is NOT a very patient person! LOL I used the new routine for bed and it went pretty well. With time it should be very good for her.
Cody played flag football yesterday and I went to see him. He had a blast, I was FREEZING!!! He had the last carry of the game and he started off going the wrong way and then ran across the field and out of bounds. It was so funny, he ran so hard and long and never made the touch down. I didn't care, he was very happy. LOL
Justin is doing well in his first two days of school. He came right home, finished his work and has done well with the computer rules. We've got to work on the wake up thing, as he is very hard to arouse in the morning, so I'm starting 15 minutes earlier tomorrow. Today he was running to catch the bus and couldn't find his schedule. So hopefully it will be smoother tomorrow. He saw the peditrician and has the referal in for dermatology to get the mole on his head removed. He also had the unfortunate luxuray of living in our house, and therefore earned himself a flu shot. LOL No tears. . . braver than I.
Tray had boy scouts tonight and is doing very well with it. Other than having amnesia regarding his science book at school, he seems to be doing great! YEAH!!
Well, that's all seven.
Take Care and God Bless,
Renee
Monday, October 12, 2009 9:40 AM CDT
We are now a gang of 9. Justin arrived yesterday with little fanfare and tote with his clothes and his laptop. We visited our first hayride yesterday after he unpacked and took our annual picture at the Pumpkin Patch. Very cool. Except that now, the hay rided cost 23.50 to get on! LOL When we started at the Pumpkin Patch, it was just Nettie, Trayvon and Joshua, and it cost us 6.00. Between increasing the family size and inflation, hayrides are no longer a cheap form of entertainment! We now have some pumpkins and planning has begun for the costumes. Joshua, Nettie and Justin aren't going to dress up this year, so that's only 4 costumes we need to come up with. Marriela is thinking she wants to be a Pink Power Ranger, Cody wants to be a vampire (with a Spiderman flavor ???), Tray wants to be something "undead" and Sergio will be something. . . we haven't decided yet.
The kids are doing well. Since increasing Joshua's Klonopin, he hasn't had a seizure since the Wednesday before last!! How awesome is that! He did have to come home last Friday and he was in pretty bad shape, very blurry vision, upset tummy, very tired. We called neurology and expressed our concern that this was a side effect of his new med and they concurred. He is staying at his current dose in the AM and we are only increasing his PM dose for the time being. He sleeps through the side effects at night, so day is the only issue thus far.
Sergio is starting with some coughing and is back on O2 at night and sometimes during the day, but we are not suprised with the rapid temperature drop we had. But he is stable in all other ways.
The rest are also doing well! No colds, issues or even doctor appointments!!
Justin did go to a dermatologist at home before coming out and it was found that he has a "funny" mole on his head that needs to come off. We have already set up an appointment with the peditrician to get the referral to a local Dermatologist for it to be removed here. He is all set for school and he and I will go to the Annex (Liverpool's building for 9th graders only) to meet with his guidance counselor and the principal at 8:30am Wednesday. As soon as he gets home, off to the doctors for his appointment and then home for homework. LOL He has no idea how busy we are here!
Well, that's it for now. Just wanted to get the new photo up and running.
Take Care and God Bless,
Renee
________________________________________________________________________________
Hi everyone!
All is well in the world of damp, wet, crud (though it did shine today for a bit LOL).
The kids are well and we all prepared for Justin's arrival this weekend. Finalized his schedule with the guidance counselor (who I don't like by the way, thus far), and arranged our meeting with the school principal and the GC for next Wednesday morning. I hope it goes smoothly for him! I would hate to be coming into High School part way into the school year and have NO idea where you're going, where your locker is, who anyone is, etc. Please pray he finds his place in this new school and the transition is as smooth as it can go for a 13 almost 14 year old young man.
After Joshua's Grand Mal seizure last week, we contacted the neurologist who felt an increase in one of his current meds paired with the re-initiation of one of his previous meds was needed. We didn't have the old med anymore (I was so excited he wasn't going to be on them when we got home from the hospital, I threw the old bottle away LOL) so we just started the increase in his Klonopin. Well, that was 6 days ago and NO seizures at all!! So I made the executive decision to not restart the old med and to wait and see what surgical options they present us. If there is no option, the we'll look at all of our med options again. We are also increasing his new med, Banzel. However, today in school he had an episode of blurred vision and then fell asleep for an hour so we need to stay at this dose for a little bit to see if it's a side effect of the Banzel or a new type of seizure. Will the fun never end!! LOL Otherwise, Joshua is doing GREAT!!
Tray is likewise doing very well. Tonight he went to his second Webelos meeting and had his violin lesson. He's too funny. He LOVES his activities and is very, very social in his new school. He has no idea how far he has come and has no idea how much he has overcome. For that, I'm eternally grateful. He is living life as a child who sees himself as 100 percent normal, despite his knowledge and experiences that tell him he's not. That's a skill only God can grant.
Marriela is doing well. Today she was unfortunately "run into" by a little classmate. His forehead met her cheek with a great deal of force. When she came home from school, her cheek was still quite swollen. I hope it's much better, not worse, when she wakes up tomorrow! I meet with her new psychologist who is doing playtherapy with her tomorrow. We're going to discuss our common goals and determine skills we can carry over at home. I'm excited to see him!!
Nettie is also doing great. Loves her new job through school at the local Rite Aid. Her job coach called and told us what a hard worker Nettie is and how many wonderful skills she has developed!! I already knew all that, but it's wonderful to hear others see it too. LOL
Sergio is now walking!!!! He's a nervous walker. He's a hesitant walker. He's a reluctant walker. But, he can walk! He has walked through the whole house and up and down the block a couple of times (with an adult right with him the whole time of course)! It's so exciting. The little boy who would never do anything, who need a trach and never be off of oxygen and steroid dependent his whole life, is now doing everything, needs no trach, is off oxygen 90 percent of the time and is WALKING!!
We also found out that he had a problem making antibodies to the pneumococcal vaccine, so he had to go back to the immunologist and get revaccinated. We go back in one month, have blood work to check titers and recieve yet another booster dose followed by another titer check the following month. Depending on his immune systems ability to create antibodies, he may need IVIG just like Joshua and Nettie. UGH!! So here's hoping that these vaccines will boost his system enough to keep him safe without needing IVIG.
Cody is wonderful and LOVING school. The teacher's report that he is a "dream student"! He's complient, ready to learn and happy. YEAH for Cody!
Did I miss anyone?
I don't think so. Today Peter and I spent the day interviewing new nurses for Sergio, since we had to fire two of his nurses this week. Apparently you don't have to show up at work, or even call to let us know your not coming. Or so they thought. We found a wonderful young man for the weekend day shifts and a lovely woman for the T, W, Th evening shifts. I hate hiring and firing, but feel good about today's new finds.
Well. . . that's it for now.
Till next time,
Take Care and God Bless,
Renee
Wednesday, September 30, 2009 5:12 PM CDT
I often wondered what I would do if/when Joshua had his first Grand Mal seizure. Tonight I found out that I do exactly what I do for all of his seizures. I wait, I talk, I sooth, I comfort. . . today I also had to add oxygen as he was very blue. I was very relieved to see that once the seizure was over, like the other seizures, he returned to normal and was seemingly fine. Sigh of relief. I don't know what I thought would happen, but whatever it was, it didn't. I was shocked to find him actually "seizing" (normally he's just very, very stiff with some hand shaking) severely on the floor. I almost ran for the Diastat, but decided to wait. It lasted 2 minutes 45 seconds, the limit is 3 minutes before we intervene.
Since being home he had a seizure Wednesday and Thursday. Then he had a wonderful 3 days with nothing. . . and then he started with one a day Monday, Tuesday and today. We are increasing the Banzel, but now I don't know if the Grand Mal is a result of the new med (many times we change seizure types when we change meds)or if it's because we took him off of those other two meds and one of them may have been working - but which one. Sigh. The puzzle seems so overwhelmingly daunting sometimes. Of all of the medical issues we deal with, the seizures are the worse. There is no rhyme or reason to any of it. There is no medication that is "specifically" for this seizure or that seizure. Like heart medicine, we know EXACTLY what it's suppose to do. Lasix removes fluid, Rhythmol controls rhythm, coumadin thins your blood. Strong medicines, potentially dangerous medicines, but still, their function is clear and concise. With seizure meds, there is no clear and concise. One med may work, two may work, three may work, or one with only work with another one, or at a dose we have to find or they become so toxic or mind numbing that their benefits are no longer desired. At this point, I WANT surgery, I WANT the "quick" fix, I WANT to do something that should work.
The rest are doing well. Marriela started her playtherapy Tuesday. The psychologist feels she has detachment dyregulation due to her prematurity and lack of maternal bonding. He feels strongly that we can do something to help her. Tonight she is WIRED to the hilt and I've about lost my mind LOL.
Tray is great and his teachers love him and he's doing very well with his work as well.
Nettie's Portal Plan is officially up and running as of tomorrow! She is only one of ten people in an 8 county radius that were approved to trial out this new program, we're very blessed.
Cody is loving preschool and has begun to write his name independently, how cool is that!! He looks so big getting on and off the bus all by himself.
Sergio continues to fight his chest cold, but he is NOT on steroids yet and we're just working with lots of nebulizers and chest PT to help him work through it all by himself. I am also happy to report that he and Cody went to ENT yesterday and both boys had PERFECT ears!! Who would have thunk?? So, for now, no surgeries, just a follow up in 3 months for both of them. He did strongly recommend that we restart Cody back on his anti-reflux meds, as he has started waking up with croup again and the recent ear infection could be directly linked to reflux if he is not treated.
Friday afternoon they are all going to get their flu shots. I will have one very unhappy car full of kids on the way home (and on the way there if they figure it out before we get there LOL). But they are NOT getting the H1N1 vaccine. My reasons are many and sound, and not arguable, no matter what the kids doctors suggest.
Till next time,
Renee
Friday, September 25, 2009 8:42 AM CDT
Hi again!
I'm baaaccckkkk. LOL Today was good and bad. . .
Good, I made it to church, something I've been trying to do for over a month, felt great!
Bad, night nurse woke me up at 3:00am to let me know she pulled Sergio's G/J tube (feeding tube) out all the way. I had to run down and get out the emergency catheter we use to hold the hole open. Back to bed.
Bad, day nurse was a no-show. No call, nothing until 10:00am (mind you he was suppose to be here at 6:00am). Poor night nurse, already flustered by the tube incident woke me at 6:50am to ask me if the nurse had called in. . . time to get up. Day nurse finally called at 10:00 claiming to have hit a deer, that was it. I was thinking that if I had an accident of any type and I was on my way to my job, I would take the time to make a 2 minute call to let the employer know that you weren't going to make it in. We are now looking for a new weekend day nurse. Anyone out there??
Good, Marriela and Tray stayed at church until 2:00 for Children's Social day and both had a great time! I was worried about Marriela, because when I walked past the room, she came running out to say she wanted to go home. I encouraged her to try it and hooked her up with an adult for a few moments and she stayed for the whole event. YEAH!!
Good, Joshua hasn't had a seizure in 3 days now! He had the two in a row Wed. and Thurs., but nothing since and he's still so happy and talkative it's amazing!
Good, Nettie went with her SU kids to the Spaghetti Warehouse and had a nice visit with them.
Bad, we were out of the right supplies to give her IVIG and now have to wait for them to send us the needed supplies via overnight mail. Sigh. It's always something.
Overall, more good than bad, but we were very unhappy about the day nurse, as he knew Sergio has been sick and now we had the whole feeding tube fiasco as well. I wasn't able to go to Bible Study as I had hoped, since Peter couldn't stay upstairs with the kids and have Sergio alone downstairs on the feeding pump all alone. If he had a problem, there would be no way to know.
Tomorrow is a new day and I am sure there will be fewer bads than today and even more Goods.
Take Care and God Bless,
Renee
________________________________________________________________________________
Hello to all!!
As most of you know, we are home now. We were discharged on Tuesday morning. It was very confusing and frustrating and I was not happy about the way it was handled at all, but it is over and we're happily home now.
Joshua had his MRI on Monday and didn't get out of recovery until 7:00pm (he had been NPO since midnight) and then had to come up with his NG tube and have his bowel cleaning meds. The first 300cc went in the tube with no issue and then. . . he woke up from the Versed they insisted on giving him, despite my warnings that he becomes very mean and angry when he gets it. He was screaming at me, cursing at me, giving me all kinds of lovely gestures and yelled the word "hamburger" about 300 times at the top of his lungs. And pulled out the NG tube. The nurse had no idea what to do so I insisted that they order him Ativan immediately to conteract the reaction, which they did eventually and within 15 minutes of the medication, he looked at me sadly and said "Sorry mom, I didn't mean all those things." My heart was so sad as I had hoped he wouldn't remember what he was doing, but he did. After the Ativan, he was happy, happy and ate 3 things of Jello, drank his diet soda and took the second half of the medicine he needed by mouth with no complaints. Then he was NPO again at midnight for the test the next day.
When they discovered he has Malignant Hyperthermia (a deadly reaction to inhaled anesthetics) he had to be moved to the first case of the day (so the oxygen machine doesn't have ANY gas in it when they use it). They woke us up at 7:00am and told me that they were discharging him RIGHT THEN AND THERE!!! They wanted me to clean out our room in the few moments I had before his transport came up to get him! I was furious and now totally stressed. Eventually, after my emotional breakdown, they said I could wait until he was asleep to come and get his room cleaned out. That helped, but by now, I was a wreck.
The tests went great, the doctor didnt' see anyting of concern but we need to wait on the results of the biopsies to determine if the damage is truly all gone. After he woke up, we went home and doing well since.
Unfortunately, he has had a big seizure the past 2 days around 5:00pm. The one on Wednesday was the worst he's ever had as well as the longest (almost 2 minutes). He was as close to a grandmal I've ever seen, very upsetting. Yesterdays was much more like his normal drop seizures, but we were hoping the new medicine would be stopping these from happening. Sigh. And now we have DiaStat on hand to give if he has a seizure that lasts 3 minutes or longer. We anxiously await to hear what surgical suggestions they have for us!
The good news is that the removal of the two meds in the hospital has allowed Joshua to "wake up" so much more!! He talks ALL the time now and is just so happy and bubbly we're all in shock as he runs around laughing and engaging in non-stop converstations with everyone!! It's so wonderful to see our true boy shining through! Imagine if he could come off of all of them,how much more cognitively capable he would be?! Sigh.
The rest of them are doing well. Sergio, and Cody are both fighting some pretty yucky colds. Cody's ear is better since taking his antibiotic and I am sure that Sergio will need steroids by the end of the weekend, but we'll see. Nettie is super busy all the time now and she loves it! Trayvon started violin lessons yesterday and he's all excited. Marriela is going to be in ballet classes and girlscouts now which she is thrilled about. Cody wants to do Boy Scouts, but I don't think he's old enough yet, we'll have to see.
Justin is still set to come in October around Columbus Day weekend. He's been preparing and hopefully doing well at school as well. I think the school is going to fight me about the legality of the paperwork (we're not going to court to change custody - which is what they feel we need to do) but we have a lawyer all set to put them straight. I plan to enroll him next week to give me time to get them on the same page before he actually arrives.
Other than that, we're doing well. I'm sure that Sergio and Cody will both need new ear tubes next month so we'll see how that goes. Cody's is outpatient, but Sergio is usually inpatient. We'll get to see the new hospital at least! LOL
Take Care and God Bless,
Renee
Sunday, September 20, 2009 8:48 PM CDT
Hi everyone,
We're still here, but moving along. Tomorrow, my "little" boy turns 14!! How is that possible, it ceases to amaze me how these kids keep getting older when I haven't aged at all. 14 years ago, I was terrified as they prepped me for my c-section and anxiously awaited my bundle of joy. My bundle turned out to be 9 pounds 2 ounces (and 2 weeks early) and 21.5 inches long. After a short trip to the NICU for transient breathing issues and we met with the urologist to go over his kidney/bladder issues, he was my perfect little bundle. Little did we know what life held for Joshua, and despite all he's been through and still going through, he is happy, easy going and rarely complains about anything he has to do (except shower. . . can any one explain why teens don't like to shower!!??) Happy Birthday Baby Boy, we love you so much!!
Unfortunately, Joshua gets to spend his day NPO (nothing by mouth) until his MRI is completed and since we don't know when they're going to fit him in, it could be most of the day. Then, while in the MRI, they are going to put a tube in his nose down to his stomach to give him the rest of the medicine he needs to completely clean out his bowels for the 9:00am colonoscopy/endoscopy on Tuesday. He is allowed to drink diet Coke after the MRI though so that will make him happy. He can also eat Jell-o and eat popsicles so I think he'll be ok with the clear diet, just not going to like the cleaning out process. He's also going to have his Port needle changed while under for the MRI in case they have a problem getting it accessed (since it's so tempermental). We increased his new medicine today and this is the first day he has had no seizures!! I pray that we don't have to add either of the two old meds back on!! Tomorrow morning they will remove the electrodes on his head in preparation for the MRI so he will be free for the first time in a week to walk more than 3 feet!
The rest of the kids are doing very well! Cody went to the pediatrician for throat and ear pain and he continues to have fluid behind his right ear. I am sure when he sees Dr. Mortelliti on the 29th he will recommend he get another tube in that ear. So he's on an antibiotic and seems to be feeling much better. Nettie has been spending time with her new assistant and loves it! Tray has been busy with school and seems to be doing well as far as any notes from school tell us. Sergio is still doing well. I will have to go inpatient with him the first week or so of October to get his ear cleaned out and the tube replaced. But, that should only be one night, we can handle that! LOL
Though I have no concerns that there is anything to be concerned about on the MRI, it's still nerve wrecking to wait for the "final reading". The MRI is to evaluate the damage to his brain and have a very current scan to refer to when they discuss which surgeries would help him the most, if at all. A prayer or two that he continues to be cancer free is always welcome and appreciated.
Till we have some results and we have a discharge date. . .
Talk soon!
Renee
Friday, September 18, 2009 6:27 AM CDT
Hi there everyone!
Still moving along here! Joshua is doing well and at this very moment playing the Nintendo. He awoke me this morning at 5:45 to inform me that he was so very hungry and that his stomach was "growling right on time." On time for who, is still debatable.
Thus far, the information they are gathering indicates that most of the abnormal activity is originating in the right frontal lobe, where his tumor was mostly located. The thinking is that possibly removing this severely damaged area may decrease, not just the drop seizures, but all seizure types with, far less medicines. This area apparently is so severely damaged on the MRI that it is probably not functioning and removing this as a first step to see how much improvement we get would result in minimal neurological consequences, while possibly gaining much better seizure control. They are talking about doing this before we even discuss the corpus callosotomy since that surgery has a much higher chance of long term neurological damage (though it is 90 uccessful in stopping drop seizures).
We were also just informed that the way Medicaid works, Joshua can't get his colonoscopy/endoscopy inpatient because he's not admitted for a GI issue, but for a neurological one, thus the GI people wouldn't be able to bill for their services. I know they're nice and all, but pretty confident that once they hear they can't get paid, they'll change their minds pretty quick. This would suck, because they are going to put him out for an MRI early next week and we could drop the NG tube at that time to give him the medicine he needs for the bowel prep, without causing him any undo discomfort. Ahhhhhhh!!!!!! There is always one glitch or another when you try to do something for the better of your child. I am just going to not worry and pray that they come up with a "solution" to the situation however creative it may have to be to get it all done while he's here and we go home with no more tests looming over our heads. As it looks now, we have at least one neurosurgery to face in the not far future as it is.
We are also starting him on his new medication, Banzel, today. However, since it was JUST FDA approved, the hospital has yet to start carrying it. So I have to drive up the road to the local Walgreens and pick it up and bring it back here for the doctors and nurses to give to him until we leave. How funny is that! As much as I find flaws in our system though, I wouldn't want to be part of any other one in the world!
So, for now, we continue to sit here, with him tethered to the bed with 35 wires glued to his head, watching and waiting for seizures and learning all of the ins and outs of playing NBA basketball on the Nintendo 64, and Bowling on the Wii.
Till next time,
Renee
Monday, September 14, 2009 8:09 PM CDT
Hi everyone!!
Joshua is officially all checked into his room and has his head full of wires all attached. We have a game plan for reducing his seizure meds (took two of the meds down by half already tonight) and monitoring him for the surgery options. He's all set up with a Nintendo in the room, the laptop (which is hooked to a webcam so we can "see and chat" with everyone from home, a Wii, and my I-phone for his playing pleasure, all day long. . . not to mention the 50 plus movies he can access on his tv all day long. Ugh!!! LOL We even have a mini fridge I brought from home to stock with snacks, just have to find time to go get the snacks. I also brought all of my scrap booking stuff to do so I can keep busy as well!
The kids are all very happy with their new teachers and schools! Marriela and Tray had an excellent first week. Other than convincing Trayvon that playing full court basketball (full contact as well) with 15 5th adn 6th graders wasn't in Dr. Attallah's aggreement when he said he could participate in gym class. So we had to quickly negotiate the situation, since Tray pointed out that this was during "recess" and NOT gym so it shouldn't count. . . hmmmm anyone else see the flawed thinking there?? He was given permission to play half court, offense only and if he had the ball he had to throw or pass immediately. So far, his teacher who watches him during recess says he's following the rules very well and is just having fun being "with" the kids. Very cool for Trayvon. Marriela likewise has moved right in and seems to have made some friends already. She is smiling coming off the bus for a few moments until the breakdowns happen, but she is holding it together for school, so that is aweome. Cody is also doing well in school and we're thrilled with how quickly they all transitioned into their new settings and routines.
Nettie is doing very well also. She has a new teacher as well and seems to like her. She started her new job at Rite Aid today and her job coach called me to tell me how impressed she was already with Nettie's desire to work and her knowledge of how to stock and "read" the codes needed for identifying the items in the store room! Yeah Nettie!
Joshua and Nettie saw the orthopedic surgeon on Thursday. She had lots to say about how well Nettie was doing since she hadn't seen her in almost 9 years. Both kids had full scoliosis scans taken and Nettie also had a "scanogram" of her legs done. Nettie had great news, as her scoliosis has barely progressed at all despite her leg length discrepency. The scanogram showed that the legs are a 1/2 cm different and her new lift was the perfect size, as her pelvis was perfectly straight on x-ray with the lift in. Joshua unfortunately, also now has scoliosis to add to his issues. He has a 15 degree curve and he has yet to have his growth spurt. So now he has to have a full set of back x-rays every 6 months to monitor and adress any additional curvature that may happen. She also found that his hamstrings are very tight as well as his achilles tendons, thus the bent leg, shuffle walk he has. She has referred both Nettie and Joshua to a local pediatric PT she says is very good to work on increasing range of motion and strengthing the back muscles to try and prevent further curving of his spine. Just one more lovely thing to add to his never ending list of problems. LOL
Sergio is doing wonderful, though it appears his ear is still having pain. We think it is the change in barometric pressure that is doing it and a new tube should solve the problem. I'm sure this one is clogged with all of the drainage he has had. Other than that though, I left him healthy and mostly happy. LOL
We have compeleted the boys room and it's all set for Justin's arrival. He is coming the weekend of Columbus Day. We put in two loft beds. Joshua and Tray are on the bottom and Cody and Justin are in the top ones. Everyone seems happy with the outcome. Even Marriela made out because she got Joshua's old bed and it was a regular twin and she's been in a youth bed, so now she's in a big girl bed for real!
We'll that's it for now, I'll update with our status as things progress here.
Take care and God Bless,
Renee
Monday, September 7, 2009 9:13 AM CDT
Hi everyone!!
Tomorrow is the big day!!! FIRST DAY OF SCHOOL!! WooooHoooo! LOL Love my kids to pieces, but. . . it's time for the structure and routine that school brings with it. It is so very necessary with a family like ours to have that kind of routine and consistency.
Sergio's ear is, in fact, improving with the oral antibiotic and ear drops. I think we're good to go until I'm home from the hospital and he sees his ENT on the 29th. Then we'll probably spend a night in the hospital getting the tube removed, the infection suctioned out and a dose or two of IV antibiotics to keep his new tube nice and clean and infection free. Otherwise, he's doing great!!
Marriela started on another med in conjunction with her Abilify and boy what a difference!! I have my little girl back to an extent we haven't seen in almost a year! I was in tears calling her doctor and thanking him for trying another medication (it was I who insisted that we had to be able to help her more than we were!) and that I had a little girl who was able to sit, relax, smile, interact and just be "happy" for several hours at a time. It's so unbelievably hard to watch your child be in a constant state of inner turmoil and find little enjoyment in life. She was irritable from the moment she woke up to the moment we drugged her to sleep. The new drug is called Celexa and she's on a miniscule dose, only 5mg, but it's what she needed to bring her little emotions into alignment. She is just so awesome and now we can see that again. Truly a blessing.
Joshua has had several more drop seizures, the last being in the morning, in the bathroom again. We heard the thud and confused, since he hadn't had one int he morning for almost 9 months, they've all been in the afternoon, evening hours. He hurt his shoulder and ribs on the shower door, but otherwise, fared the event fine. I truly pray that this admission will bring these seizures to an end. Otherwise, he too is doing very well. We're taking him to the orthopedic specialist this week to discuss why Joshua doesn't walk with his legs straight. Joshua tends to walk with a sort of shuffle walk and both knees are sort of bent all the time. Even when we ask him to stand up straight, he says he is, but his knees are still bent. I'm sure he just needs some PT to lengthen his hamstrings a bit to make it more comfortable for him to stand up straight.
Tray is already for school and very excited about starting at his new school. I am so pleased that there is little anxiety about this, since anxiety is a major issue with his heart. He's facing this new year with excitment and happiness. Very cool. Now I just have to come up with a diplomatic manner to let him know that walking to school is not going to be possible. The walk will be too much for him as well as take him too long and he'd be late for school every day. So we're going to try the "while mommy's gone, you take the bus strategy and then deal with it when I get home. We'll see how that goes.
Nettie has already prepared her first two weeks of school clothes. LOL We just went over her work orders (she's going to be working at our local Rite Aid for the first half of the year) and what clothes she is mandated to wear (so she can prepare her outfits already LOL). Nettie also went to see the PT at the Rehab unit and she is making a referral for her to start PT at the Institute for Human Performance in the near future. The goal is to teach her techniques to relieve her back pain to come up with a solid routine for her to carry through with at the YMCA that will address her specific concerns. This week she will be joining Joshua at the orthopedic surgeon to see if her scoliosis is stable and if her hips are still doing well from her surgery almost 10 years ago!
Cody is doing great and has begun to learn the art of "getting someone in trouble" and taking every opportunity to practice this new found skill. "Tray's staring at me! Marriela took my toy -forget the fact she has no toy and neither did he at the time of accusal - Joshua said mean things. . . etc, etc." We're just not used to the "normal" developmental curve and a bit overwhelmed at how early these skills actually emerge in kids!!!! LOL Hopefully it also means he'll move past them faster as well. LOL
Today we're closing up the pool, last signs of summer vacation has come to an end.
My nephew, Justin, is in fact, joining our family for at least two of his high school years. He should be coming the weekend of Columbus Day. Working hard now to find bunk beds to make room for him in the boys room and to give him his own living space. Now we're going to be a gang of 9. YIKES!!
Well, that's it for now.
Take care and God Bless,
Renee
Tuesday, September 1, 2009 9:03 PM CDT
Sergio's ear infection is back with a vengence. I took him to the pediatrician's office today due to increased drainage from the left ear as well as him needing more O2 yesterday and today. The doctor was disgusted by what she saw inside.
Apparently the last culture was very positive for pseudomonos and a little bit of staph. However, pseudomonos is very hard to combat with oral antibiotics, thus the reason the last three rounds have failed.
Plan: To restart oral Omnicef for 2 weeks minimum. This means we have to start giving him probiotic yogurt via his g-tube to protect his GI tract. We don't know if his stomach actually works at this time or not, so we're in uncharted territory.
In one week we go back, unless he develops a fever or other increased symptoms (like increased O2 needs, more drainage, pain, etc)then we go straight to the ER.
The hope is the oral meds will work, if not, he needs IV meds and the tube to be removed STAT. The earliest we can see ENT is the 29th so we have to get him to that point if possible. Otherwise, we'll go to the ER and get him on the emergency surgery schedule to get the ear cleaned up and then start some IV meds.
All of this needs to be done and decided BEFORE I leave on the 14th! Can you imagine, one here in the hospital and having surgery and one in Rochester hooked to a thousand wires having seizures. To much to even consider at this time.
Otherwise, Sergio is doing great. He doesn't seem to feel the infection yet and is trying more and more standing each day!
Trayvon had his blood work done today to check his labs, thyroid and coumadin levels. Wanted to have a fresh set of labs prior to school starting so we all feel good about where he stands.
Marriela's urine was submitted today for a culture and analysis. I'm sure it will be fine, but boy is she still going a lot!!!! Also called her doctor about adding Lamictal to her Abilify to help with her obsessiveness (Barbie Jeeps), chronic irritability and distractability. I hope to hear from him tomorrow. She is having a playdate tomorrow, we're all going to the zoo!
Nettie is so very excited about her new staff person she has hired. Sandy is a very sweet, fun loving woman who has lots of experience that will do wonders for Annette. Unfortunately we found out her plan can't start until October 1st which obviously not good for Nettie's plan to stay busy while I'm gone. However, we're working on something to see if we can get some respite hours for Annette so Sandy can come and help her get out of the house for a bit until the beginning of October. Praying this works out for Nettie!
Cody continues to do well. He is the one that's going to break bones and cause me gray hairs more than any of the other children combined. I find him jumping from counters, tables, couches to chairs, decks to concrete and trees to . . . whatever he can find to land on. I swear he's part monkey!
Our nephew Justin has been here for almost 2 weeks. There is a chance after the first progress reports out at home, that he will be coming here for a couple of years to get some high school under his belt and some routine into his life. We'll see if he can pull it together with his Mom at home. What's one more at this point. LOL
I ask that all continue to pray for my good friend's son, Andrew. He is in a precarious situation and needs lots of prayers, rest, recovery and most of all, answers for what is happening to his little body. He is now in the ICU on full support and finally resting a bit. He needs to recovery fully so as to move on to his next big hurdle, a bone marrow transplant to correct his tired and waning bone marrow.
Take Care and God Bless,
Renee
Thursday, August 27, 2009 5:51 PM CDT
Hi everyone,
All is well here on the home front, though I am SOOOOO ready for school to start. The kids have all been healthy and happy (I think they're happy LOL).
Sergio is doing great and is so ready to take independent steps, but hasn't broken through the mental block telling him he can't. He tends to fall straight backwards when he feels you let go of him. He's also addicted to the light on the Direct TV box, which is, unfortunately directly at eye level for him. He spends a lot of time in his crib as his "punishment" for turning the box on and off. LOL He went to the opthomologist yesterday and was given the ok for another 6 months. He did however, express concern that we need to go visit the office that made Sergio's eye prosthetic because his eye socket isn't growing due to not wearing it. I hate the idea that we have to do this again, but will do it if he needs it. He's been needing his O2 at night most of the time, but overall doing very well.
Marriela continues to use the bathroom entirely too much still, but we've ruled out infection and diabetes, and the offending med that started the issue has been gone for over 3 weeks now. So now it's more of a behavioral issue and we've earned a visit to the "potty doctor", the NP at the nephrology office. She apparently has had wonderful success with this issue in kids. We'll see just how good she is! LOL Marriela has now been on the maximum dose of Abilify for a over a week now and though doing well, needs something else to bring her anxieties and irritablity down several notches. I will be speaking to the doctor tomorrow to discuss what options we should look at. Tomorrow she will also meet her new teachers after I have a meeting with them to discuss her current status. She's very excited!
Joshua is doing well. He did have another drop seizure last night in the bathroom following his shower, of course, he didn't have he helmet on again, since he had just come out of the shower. He was unharmed though this time. We are preparing for his admission on the 14th and suspect it will be a lengthy stay. I have been telling the teachers 2 - 4 weeks so everyone is on the same page. I am also getting the nursing, clothes, supplies, hair and meds prepared for my departure. Peter has been practicing doing Nettie's IVIG and Sergio's medical care so he is all set for my absence. This is definatly going to be the right thing for Joshua, just a long road to get to the final destination.
Tray has been doing amazing. He had a fantastic week at camp! He actually told me that he had trouble walking the hill at camp and then the next day after wearing his oxygen all night, he was able to do it with no problem. YEAH!! I love when THEY see that it's all for a reason, vs. you having to tell them to do it "because you have to." He's already for 5th grade and should be seeing his teachers soon as well.
Nettie has been busy interviewing the position of assistant for herself. We met with 4 women today and 2 more tomorrow and then she will have to chose one. We think we've already picked one, but she has 2 great choices so far. Her assistant will start on the 14th when I leave, so she should be nice and busy doing fun and exciting new things while I'm gone. And yes, I did arrange for this to happen about the same time so she would have less free time to fret over my being gone, as my absence is a very anxiety ridden issue for her. She feels that Joshua is going to die and just wants us to be home to see him and I for herself. Other than that, she's doing fantastic!
And last but not least, Codybear. He's doing great. He'll do wonderful in preschool, as he is completely independent in virtually every social situation. He needs no one to ask him twice to play, he needs no one to show him how to play or what to play or where to play, he just does and makes friends whereever he goes.
Other than my anxiety over being gone for so long, we're doing well. Looking forward to school starting, and the kids getting back on schedule. My nerves are getting more and more frayed by the day, I swear!
Take Care and God Bless,
Renee
Monday, August 17, 2009 6:17 AM CDT
Again, it's been a while.
We've been busy since the last update! First, we went out to Lake George area for my mother's side of the family, Family Reunion. It was rainy but very nice. The rain didn't phase the kids at all, they played all day long on the playground in the rain. The butts of their pants were a MESS!! LOL All of the kids did great this year, even Sergio! Though his ear infection was still an issue and he's currently on his third antibiotic for it, he never acted like he was having a problem and he thoroughly impressed everyone with his new skills!
Joshua and I have also been out to Rochester for his sleep study and GI appointment. I don't know what the sleep study will show, but while having the consult with the doctor, he was falling asleep sitting up in the office. This has been an ongoing issue for a while now. He just can't keep his eyes open throughout the day. Yesterday was one of his best, but only because I wouldn't let him fall asleep during church (and he was trying hard!) and then we went up to my ex-sister-in-laws for a wonderful swim in her swimming pool (WAY warmer than ours!) Joshua actually went swimming both the day before and yesterday. Two days in a row is a record for him I think! LOL. The day after the sleep study we hung out for a few hours while waiting for his GI appt. There we saw the doc he saw back in 2006. She felt that the only way she could really look at his belly pain was to go back and do another endoscopy and colonoscopy. He had one done last year was the day after his birthday, guess when this one is scheduled for. . . the day after his birthday. Two years in a row he has had to spend doing bowel prep for this stupid test on his birthday. At least he'll already be inpatient so they can sedate him and then drop an NG tube for the nasty stuff he needs to take for the prep process (last year he vomitted it all up and had a terrible time with dehydration). Other than that, he's doing well.
Marriela had to have a rapid change of meds due to a side effect we had completely forgotten about when she took Risperdol last time. She couldn't stop urinating. Every 10 minutes she was in the port-a-potty at the reunion, it was terrible. The ride down and back was also very stressful, as she needed to go so many times we took forever getting anywhere. She is now back on her Abilify, but at a much higher dose. She sees the psychiatrist tomorrow and Peter is going to discuss the need for some anxiety meds RIGHT now. Her behaviors are still present but we are most concerned about her fears and anxiety over everything in life. . . bathrooms, pools, new rooms, new people, old people, Church, stairs, etc, etc.
Tray was taken down to his camp by NYC yesterday. Peter drove him down and dropped him off. He was soooo excited to finally get back to his heart camp! He missed it last year due to his lovely visit to the PICU. It's hard to believe that is has already been a year since we went through all of that with Trayvon. He has come so far, with the exception of some things like his O2 at night and his exercise restrictions, he's the same ole Trayvon. I hope he has a great week.
Cody is well. . . Cody. Fearless and articulate. He has no problem doing things that make my heart skip about 12 beats (like try to walk along the hand railing of the ramp out front - which is about 4 feet high in spots, or swimming in the deep end of the pool with nothing more than his floaty bathing suit, and going down the big slide at the swimming pool, and trying to use power tools to "fix" things, etc.) Yet he is able to clearly explain why he needs and feels he can do all of the above without my need to be worried. Scary. LOL
Nettie is doing well. She has been contending with a sore shoulder and back for a while now and anxiously waits for her appointments with Rehab and Orthopedics. We hope they can shed some light on how to help her address her pain while making it easier for her to walk as much as she wants to walk. Today her new walker is finally arriving. Unfortunately, she'll be at Casey's Place when it gets here, but she'll see it when she gets home. Her lift on her sneaker should also be done by this week as we went in last week to have her braces tweaked again and left the shoe to have the lift added. With all of these modifications we hope her pain is short lived.
And Sergio, as I had mentioned is now on his third antibiotic for his lovely ear infection. However, I think this one has finally worked, as his ear is no longer draining green pus. YEAH. He has had several episodes of irregular heart rates sent via his event monitor, but no word from the doctor, so assuming it's nothing serious. And we had a huge surprise on Friday. . . his wheelchair has arrived!!! It's so cute and I love the orange we chose for the frame. He looks like such a big boy. . . the point of the chair in the first place. I was very tired of mom's coming over with their little ones around 12 - 18 months and telling them to be careful with the "baby". My "baby" is 3 years old!! It's time he started looking like the big boy he really is. I'll try to post a pic as soon as I can.
And last but not least, we went to the Wayne Mahar Weather
Deck party we had been nominated for by Sandra. It was hot, and the kids had a BLAST!!! Even Sergio got into the bouncy house and loved it! Marriela took a while to get up the nerve to say hi to the mascot from the Syracuse Crunch team, Al the Gorilla. She had a love/hate relationship with him. She would drag Cody around with her or Sandra's lovely daughter, to see him and then bolt when she got to close. Eventually, she did shake his hand and even hugged him at one point. Thank you so much Sandra and your wonderful family! We loved meeting you all and look forward to seeing you all anytime you want.
Well, that's it for now. I will upload pics when we get back from the port access.
Have a great day!!
Renee
Wednesday, August 5, 2009 7:43 PM CDT
Our seizure free period came to a crashing halt tonight. Just after arriving home from a great time at the Familycapped Picnic, Joshua had a big drop seizure in his room (no helmet, ugh!). His stomach hurts so we think he hit it on the side of his bed. We knew it was too good to be true, and just reaffirmed our need to go through with this admission in September and then with the surgery if possible.
We also have good news! Sergio is signing more and more now. Today he independently did "swing" and "play"! He is also spontaneously using "more" and "my turn" in many different scenerios. You can go to Youtube.com and search "Sergio signing" and "Sergio signing 2" and catch a glimpse of him doing some signing in his swing.
Tomorrow is Marriela's real birthday. 7 years ago Marriela was never expected to survive due to a miscalculation on her mother's part when she became pregnant. The doctor's thought she was only around 19 weeks. Mom gave birth and Marriela laid there on the blanket for over 4 minutes when one of the nurses noted that she was not only breathing she was clearly more mature than they had estimated. By the doctor's calculations she was around 26 weeks. She spent the next 4 months in the NICU, 3 of them on the vent as she struggled to learn to breath. She had many set backs, but soon proved the whole staff wrong. . . she would survive. Marriela is a beautiful, social and endearing child. She is also an intense, highly energetic and at times challenging child, but she makes us better parents and we pray we're helping her become a better person. She has overcome so many more challenges than people will ever know to just look at her. She has virtually no outward signs of her battles with the exception of scars on her neck from her central lines and a large scar across her shoulder blade and side where they repaired her heart in the NICU. But, let me assure you, she is a fighter through and through and we are immensely blessed to have her as a part of our family. Happy Birthday Marriela!
I also have some great news of a different type. We were nominated,as a family, for the Wayne Mahar's party on the weather deck. A beautiful soul named Sandra nominated us after learning about us on the internet. Sandra has a small army of crocheters that make blankets for local children with a variety of challenges. She showed up at our door one day with 6, yes SIX beautifully crocheted blankets. One for each child (even Cody who has no issues!), what a beautiful heart. So we have this wonderful party to attend with the kids and Sandra! Thank you Sandra!!!
Well, that's it for now. Need to start packing for the long weekend trip.
Have a good night,
Renee
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Hi everyone,
Sorry about the delays in between updates.
Today was Marriela's 7th birthday party. Now, most of you out there don't "know" Marriela, but she has, for lack of a better description, an INTENSE personality. When she's happy she's super happy, when she's made she's very mad and when she's sad she's . . . well, you get the idea. Anyways, she also has some impulse control issues and the calendar. . . well that's just a waste of her time. She has felt that the world is out to play a cruel joke on her for the past 4 months because it couldn't be her birthday, just because she wanted it to be. Well, today it was. She has been asking for the past 4 months for a Barbie Jeep (the power kind that you charge and then the child gets in and drives it). Fearing it may be too small, Peter took her to Walmart to "try it out". Just as we feared, she was like the Jolly Brown Giant in the thing. So, off to the computer to frantically convince her that there were other options out there. She finally settled on another Barbie vehicle and we were all set. . . and then we discovered that there were weight limits and store availablity issues. Things were not going well last night. UGH! So today, Peter drove up to Walmart and decided to look himself. He found a John Deer tractor that held up to 85 pounds and was for 3 - 7 year olds! WooHoo, we had our tractor. Now we had to just pray that she was "cool" with it being something other than pink. . . worries over nothing. She loves it! Yeah. She has some other very nice gifts to play with as well, but first, the newness of the tractor will have to wear off I think LOL.
The kids are doing well. Sergio and Tray both had visits with the Cardiologist. Tray is doing fine, nice and stable, didn't even do an echo this time. And Tray was thrilled when I convinced the doctor to let him try going back to gym class this year at his new school. There are some strict limitations to what he can do and if he fails just one time to report any symptoms due to fear of losing gym, then he will lose it for the rest of his school career. . . he agreed wholeheartedly to be honest and self limiting. We'll see. As for Sergio, he now has an "event" monitor for the next month. He simply wears two little electrodes on his chest that plugs into this small round recorder. If I see any irregular rhythms or he has very slow heart rates, we push a button and it records the event for the doctors to see. So far we've transmitted several events for irregular rhythms. His echo, however, was wonderful and despite all of his lung issues as a baby, his heart has sustained no damage from it at all.
Today Sergio also had a pulmonary appointment for a check up. She was pleased with what she saw but found that the antibiotic hadn't cleared up the ear infection and the other ear was on the the way to an infection. So we've changed antibiotics again. Good thing she checked, we leave for my mothers on Saturday! Last year he had a very bad ear infection during the trip as well and was beyond miserable!!! Hopefully this will not be a repeat of that experience.
Joshua goes out to Strong Memorial for an overnight sleep study next Wednesday and on Thursday we see the GI doc to follow up on his eosinophillic gastroenteritis. Maybe she'll have some input into the missing calcium in his bones as well.
Nettie has been away for the week at OCC for her "New Visions" program. It's a week long "college" experience for people with disabilities. She went last year as well, but seems to really like it better this year. She already has a date for her OCC prom night tomorrow! She graduates on Friday.
This weekend is my mother's side of the family, Family Reunion. It was a lot of fun last year, I'm so happy that we brought my dad to see everyone for one last time. He really enjoyed himself so much and it was so great for people to see him after almost 15 years! I'm deeply saddened that he will not be joining us this year. He passed away only 6 weeks after last years. I miss him so much.
Other than that. All is well.
Take Care and God Bless,
Renee
Sunday, July 26, 2009 3:48 PM CDT
Hi everyone,
Well, we went to the doctor and his right ear is severely infected. The pus and infection was so thick you couldn't even look into it. He's now on antibiotics and should start feeling much better in no time. His temp never went as high as it had last night, but it did hit 102 again so that's when I decided I didn't want to be home alone with all the kids and try to take him to the doctors. Glad I made that decision!! Poor baby. The rest are doing well. Believe it or not, Joshua hasn't had a seizure (of any type, as far as we can tell) in over 8 days!! How wonderful, but we're still on the edge all the time, because now there's no predictability to follow so we don't know "when" to expect them. He's getting his IVIG infusion right now. We're still planning on the September admission because we can't live with this fear over our heads all the time and the "what if's".
Till next time,
Take Care and God Bless,
Renee
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Hi everyone,
Sergio is quite sick again. He woke up this morning with a 104 degree temp, high heart rate and his O2 has needed to be increased. Plus, his nurse is out sick as well! I have hydration running, gave him tylenol and motrin and have a low fan running on him right now. Praying it's "just" an ear infection or a mild virus. Peter is suppose to go to his High School Reunion this weekend! We didn't tell Sergio, so how he knew to get sick this weekend is beyond me! LOL He was running a very low grade temp (highest was 101.3) yesterday and he was acting fine other than needing O2. But he was doing fine. So we'll see how the day progresses.
Take Care and God Bless,
Renee
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New Pictures as well!
Hi everyone!
It's been a little bit since our last update. All is well and I'm sitting outside with Tray, Sergio, Marriela and Cody enjoying the nice weather and eating a bag of BBQ chips. Well we are all eating them except Sergio, he has no idea what he's missing!
The kids are all doing well for the most part. Joshua came home from camp this past Friday after a great week. He only had one drop seizure and was conveniently in a hallway with 3 counselors surrounding him when he went down. They caught him and lowered him down to the ground where he recovered quickly and had no further issues. YEAH! We have been anticipating the next seizure since they tend to come two to three days apart, but he didn't have one last night so now we wait tonight. We have a date, September 14th for our admission to Rochester. After a discussion with his neurologist, we are also going to tailor this admission to an evaluation for the corpus callosotomy. I know I have mentioned this before and we prayed we wouldn't have to come to this, but alas, we have. The surgery would separate the two halves of his brain (leaving a very small piece of the corpus callosum in tact to preserve his speech abilities) making it much more difficult for the seizures to cross over and become generalized seizures (that's what his drop seizures are). Obviously, due to his previous brain surgeries and other treatments, he's at higher risk for complications, but we feel that it's better to do this while he's younger than wait till he's older and at much higher risk of hurting himself during a seizure. So we'll see what the data shows us in September.
Tray is doing great and he and Marriela had a blast at the Lysander Town Day Camp. They were both very excited to go each day and always in wonderful moods when we picked them up. I am going to see if there is another week I can enroll them in this summer and next year, I'm going to do 3 weeks for each I think.
Marriela's meds aren't working out. The adderall actually makes her behavior profoundly worse. Today we went without any meds and it was one of her best days in a long time. I realize this is a honeymoon period, as her body adjusts to having no meds and eventually we'll need a different set of meds. But now, I'm going to push for treatment for Bipolar, as I am positive this is the issue and she is not being treated appropriatly. I am also going to push for an evaluation at Strong Memorial as well.
Annette is doing wonderful and looks fantastic in her new glasses! We were hoping to order her new walker at the end of last week, but they haven't credited the older walker back to our account yet so I am praying that it's there tomorrow so I can get her the walker by the end of this week! In addition, her new braces caused some severe sores on her right foot, so they need adjustments, but the orthotist was on vacation last week. Again, I hope to have her in by the end of this week to get them fixed for her.
Sergio is doing very well for the most part. We saw infectious disease/immunology last week. I insisted on an appointment due to the sever ongoing diarreha that he has all the time. I have to take one of his diapers up to the lab tomorrow to be cultured for Rotavirus again (which I'm sure it will still be positive for - one just knows by the smell alone!). He was also given a whole slew of lab work to check his immune system to see if there are any issues or "holes" in it. I also have to take him for the lab work tomorrow as well. His O2 levels have been much better and other than some transient times he needs O2, his levels are in the normal range and his cough is virtually gone. We also recieved his replacement glasses yesterday (that was super fast!) and today he tried to destroy them by crushing them. So now we have to go to the eye glass store and have them straightened back out to fit his head. Darn kid is keeping me on my toes!
While we're at the lab (which is across the street from our pediatrician) I'm going to take Marriela in for a look at her private area. She keeps telling me how much it hurts to pee and I'm suspicious she has a UTI, so we'll get that straightened out as well.
I'm sure I have forgotten something. But until next time,
Take Care and God Bless,
Renee
Thursday, July 16, 2009 8:12 AM CDT
Oh my, we actually hit 80 degrees yesterday!! Tray went swimming with our niece at the local public swimming pool (yes, we have our own, but the water was still to cold for Peter and I to want to go in with him LOL). I have a very nasty summer cold/flu thing going on and can't stand that I'm sick. I am fairly confident that Cody and Sergio shared their lovely germs with me, as they both have nasty coughs as well.
Sergio has actually been doing well despite having to use O2 again at night and having a very bad sounding cough and a very stuffy nose. He has also had a return of the rotavirus which now leads us to yet another doctor, infectious disease. I suspect that his prematurity, long term high dose steroids and his continued inability to fight off ANYTHING that comes his way, indicates he has an immature or damaged immune system. I want, so badly, to just give him a dose of IVIG and see if his little body can finally catch a break from all of these illnesses so he can grow and flourish. But, we have to follow protocol and run all of the necessary tests and such to be sure we know and understand just what parts of his immune are the problem, if any. We are also awaiting an appointment with the Developmental Pediatrician (someone who specializes in children with developmental disorders) and the team. This team will help us determine what he needs to make his fullest potential as well as help us access the equipment he needs. I don't know if I told you that we were all set to submit the paper work for the bed he needs, and then. . . the medical company refused to send to paper work in due to not wanting to get mixed up in the appeal process! How crazy is that! So far, we don't have another company willing to submit the paper work for us so we just sit and wait for the political wheels to turn to figure out where we go next. Today the representative from the Commission on the Blind is coming out to register him legally blind. Then they can obtain him some new glasses (since he threw his last pair out of the car at some point).
So many people, specialists, so much paperwork, forms, so many phone calls, faxes, e-mails, so much all the time. It is overwhelming at times, but then you finally get the end result and you're so happy you filled out the 30 page packet for the doctor, filed the 17 page camp application, and made the 12 phone calls and sent the 10 faxes for a piece of equipment.
Joshua continues to be the same. Happily oblivious to the fact that he's falling down so hard that he's got bruises EVERYWHERE (thank God his seizures are well documented or we'd have CPS standing at our doorstep for sure). He colors in this books, makes up pretend wrestling matches and creates charts to document who won and lost those matches, makes photo copies of fake money and "books" of his favorite wrestlers. He's always busy with some new "project".
Cody's cough, though bad still, is responding to nebulizer treatments, so it's not "just" allergies as I had hoped. Obviously this is either a prolonged virus (since I am now sick as well) or it's his asthma just being a pain in the @#$. Otherwise though, he's happy and healthy.
Marriela is now on Adderall again. She seems to respond well to the medicine (definately NOT sedating) but the "down" time after it wears off is almost as bad as the time she's not on anything. So I suspect we'll need to give her 3 times a day dosing to maintain the even keel in her body. I do have to say though, I have NEVER heard anyone talk so much in all of my life as I did the first day she got the new meds. She talked non-stop (and I mean that quite literally) for over 5 hours. She was recalling memories about things she did when she was 3 years old, talked about things that will happen in the future and just talked, talked, talked. It was a bit overwhelming. However, she did not tantrum once, she did not become fixated on any one topic (ie. the Barbie jeep she wants for her birthday) and she did become irritable at all. I'll take the talking over the other stuff any day.
Tray is doing great and the rash apparently was the remainder of a bad sun burn on his face. I applied aloe and eucerin several times a day and it healed nicely.
Nettie now is the proud new owner of braces that keep her feet from turning in as well as new sneakers. She LOVES them and we're "fighting" about the fact that she needs to give her feet time to get used to them before she can wear them all day. Next week she'll have her new walker and new glasses and the following week we're going to get a lift put on her new shoe. This way she won't tilt so much when walking due having one leg shorter than the other.
Well, that's it for now. Peter should be home from the laundromat soon and I'll be busy folding laundry for a bit. My cold/flu is trying to move on so I'll see if I can help it on it's way with some soup in a bit.
Take Care and God Bless,
Renee
Sunday, July 12, 2009 4:12 PM CDT
Hi everyone,
Here’s coming to you from the middle of a mean looking thunder storm. Luckily we spent most of the morning and early afternoon outside with the kids while they rode their scooters, bikes and out back playing basketball. It looks like the rest of the day will be a wash out (we were hoping to go swimming later!).
All is well for the most part. Sergio has made some very nice progress in the past week or so. He’s been able to go O2 free almost all the time except a few times when he was sleeping. I am more and more suspicious of seizure activity as the cause of the low levels and he’ll probably need a video EEG like Joshua has had (requires an overnight stay in the hospital) to rule seizures out or in. He is also going to see cardiology on August 8th along with Trayvon. We’re going to have his low heart rates and sats evaluated by cardiology as well to be sure we’ve covered all of our bases, but I’m still thinking that the problems are seizure related. We’ll see. Overall though, he’s made some very nice progress health wise.
Our major concern at this point is Joshua and these stupid drop seizures. We are now unable to leave him alone for any period of time. Yesterday he went upstairs for a moment to get something. Peter watched him go up the stairs (we always position someone behind him going up and in front of him coming down). He was busy looking and answered us when we told him to hurry up (so we could get him downstairs where we could watch him) when we heard the sickening crash, knowing he was down. I ran upstairs, though it felt like I was crawling, and we found him just coming around on the floor. He had hurt his shoulder, elbow and side of his chest where is port is. However, he was wearing his helmet was on (as it is all the time now) so he didn’t hurt his head. We have increased his Klonopin in hopes that he will have a decrease or temporary reprieve but so far it hasn’t happened. I anticipate having to go inpatient after his week at camp for a period of 2 to 4 weeks to wean him off of his current meds (which obviously aren’t working) making room to start some new meds. Due to his severe dependency on them physiologically (his body is addicted to them but they aren’t doing anything from a seizure standpoint) when we try to take them away he has severe withdrawl, which ironically presents itself as seizures in addition to grogginess and nasuea. The doctor already told me he will require a great deal of IV rescue medications to get him over the withdrawl “hump” to prevent a status epileptus. . .
Had to take a break due to the storms and now it’s a whole day later LOL!!
So anyways, where did I leave off, oh yeah, we’ll be going inpatient with Joshua sometime next month or early September I suspect. Today he took a big spill on his scooter coming home from Church and ripped up his elbow, knee and knuckles. The poor kid can’t catch a break! He’s happily looking at a “map” coloring book and learning about the different states.
Tray came home from camp and had a great time. However, he has a strange looking rash (for lack of a better word) all over his face. It looks more like lizard skin on his cheeks, nose and chin. I have been applying steroid cream to it and lotion every few hours to keep it soft. Though there is a small improvement, I’m not sure this is the way to go. If it’s still there in the AM I’m going to take him up and have it looked at by the doctor. I don’t want to mess around with him and the number of meds he’s on can cause additional issues. He is very proud of the fact that he has “5 girlfriends and has a hard time keeping track of them all.” LOL That’s my little loverboy!
Nettie has been at Casey’s Place all weekend and should be arriving home soon. She called several times yesterday due to the thunderstorms. She is very frightened by the lightening. This morning she texted about how scared she was and how she hid under her covers for most of the night. She's probably exhausted from being up so late. Poor thing. She just called to say she's on her way home. Tonight is suppose to be very quiet and she gets her IVIG so I think she'll get some good sleep. We ordered her a new walker, but unfortunately I picked the right one height wise, but it's too narrow. There is a "young adult" version that she needs so I have send back the one we got (I hate sending things back!) and have them send the right one. We also went and picked out her new glasses, they'll be ready next week as well as her new braces and her new sneakers. I told her she's going to look like a whole new chick by the end of the week if her walker gets here by Friday! LOL She's thrilled.
Marriela is now working on weaning off her current med, Tenex, and we're starting a new one on Tuesday. . . Adderall. We're going to give it another try because the Tenex clearly was not helping and in fact, seemed to make things worse. If this doesn't work, then we're going to look at changing her mood stabilizer to another one and maybe adding an anti-depressant to see if we can get her out of this cycle of severe irritability. She is loving summer school and currently running around screaming as her brother and neice, Sammy, keep showing her the worms they're busy digging up in my back yard. She is such a girly-girl.
Cody is doing awesome. He has a constant cough, but I'm almost positive it's just his allergies and we need to wait for the weather to warm up and dry out a bit. It's been very rainy and cool (especially for the middle of July!) which causes the mold and pollen to continue to be terrible.
The boys are playing a game of "Big Momma's House" (like "H-O-R-S-E" only spelling the latter). It's interesting to watch and listen to their logic on rules and regulations for a game that really should be very simple. By the end of the game there are so many rules that no one can possibly win! LOL
My baby, Joshua, just went down, right in front of me, face first into the concrete. He has re-opened the wounds from earlier when he fell from the scooter, as well as added multiple scrapes and bruises to the other arm and now his stomach. I'll take some pictures of his bruises so you can see how bad he falls and how much these must hurt, but he never complains.
Well, I need to make some dinner now.
Take Care and God Bless,
Renee
Saturday, July 4, 2009 9:09 PM CDT
Hi everyone,
Happy 4th of July!!!!!
We’re going to my sister in laws here shortly for a nice cook out (or cook-in depending on the weather). My sister and nephew came into town last night for the weekend as well. They’re going to a friends for the day and will be back tomorrow to spend the day with us.
The kids are doing well for the most part. Sergio was at the doctors yesterday to some serious reactions to mosquito bites. He was eaten alive the other night and most of them are severely swollen and red and hard so I wanted to know if there was anything else we could do to help him until they heal. We’ve tried to mosquito proof his room now and so far, no new bites. He’s on his O2 as per the doctors orders now 24/7. He hates it! I don’t blame him, I hate it too. He doesn’t need it all the time and I’m having a hard time understanding the logic of keeping him on it continuously, but that is what the doctor wants and I’ll play the game for a bit longer in hopes it really is the answer to the problem, but I don’t believe, in my heart, it is. I did also request another cardiology work-up with Trayvon’s cardiologist. We’ll see if they can explain the rapidly fluctuating heart rates and increased need for O2 at random points in the day. But other than that, he’s doing much better!
I had forgotten this was the week for Joshua’s IVIG, and had to call at 2:00pm on Friday afternoon to see if they could fit him to access his port. Thank God they said they could if I got him there immediately. I started his IVIG at 7:00am this morning, however, his pump was having PMS in a major way! It only wanted to do the first of the four steps and would only go 33cc/hr. He has 300cc to infuse so we were looking at a 10 hour infusion, that wasn’t working for me! LOL So I called the pharmacy and waited and waited for them to call me back. Finally, an hour after I called (I had fallen asleep waiting) they call and I realize that, for whatever reason, the pump is working now. Cool. So we finally get the infusion done and we are in a mad dash to get to the cookout since we’re an hour and a half behind due to the pump. Fun. LOL We’re also back in full seizure watch mode. He had another big drop seizure while playing the WII last night and hit his cheek hard on the corner of a stand in the living room. It’s always hard to see him go through these seizures and it’s even harder knowing there is no way to stop him from hitting the ground so hard. He now wears a skateboard helmet at all times so it can’t fly off when he goes down. It’s sad to see him with the stupid thing on his head all the time. I hate seizures.
Tray is leaving for Camp this Monday for a week. He’s looking forward to it. I’m nervous since it’s for siblings and he’s not just a typical sibling (most of whom have no health concerns other than say asthma or allergies) and I was worried that there wasn’t enough medical staff on hand. But, they’re going to give him a one on one counselor and monitor his activity level closely (at least they say they are LOL) and there is an RN, LPNs and a part time doctor on site this week, so he should be good to go.
Marriela is now on her full strength meds and we’re waiting to see if there is a big difference. I suspect we’ll have to give it a few weeks to really know for sure, but here’s hoping!
Cody is doing great!
Nettie is a walking phenom! She is walking for up to 2 hours a day now! It’s unbelievable how much and how dedicated she is to walking! We’re very proud of her and hope the efforts pay off for her in a way she can see easily (clothes fit better, less back pain, etc.). We also finished up her IVIG infusion today as well so now we’re all set for the week. I was so proud of myself as well, because I gave Nettie her Depot shot for the second time ever! However, I didn’t do as well as I did the first time and she was still hurting bad 2 days later. I was crying like a baby after I did it and all she said to me was that she was proud of me for doing it. What kind of child says not to worry about the pain you caused them but says they’re proud of you for causing it in the first place! I told her she was an awesome daughter and I promised to do it perfect next time (three months from now, so I’ll be practicing on some oranges until then!).
This week they all start their various summer activities. Joshua and Nettie start the Casey’s Place summer program, Marriela is off to summer school, Tray to his first of 3 camps and Cody. . . Well he’ll just hang with Sergio and I for a bit. LOL
Till next time!
Renee
Tuesday June 30, 2009 7:27pm ET
Hi there!
Cody and Marriela are doing very well at camp. Cody was playing shy at first, but then when I went to pick him up he wanted to know if he HAD to go home! However, tonight he’s had two big bouts of diarrhea. I’m praying it’s just something he ate and by morning he’ll be fine. He doesn’t seem ill in any other way, so we’ll see.
Joshua had his first big drop seizure in a while on the back porch. He went down hard and fast and right in a fresh pile of dog poo (thanks to my pain in the @#$ dog that refuses to wander off the porch to relieve herself. . . Anyone want a blind, diabetic, 13 year old Shi-poo in kidney failure?). He was out of it for a bit but, came around and seems fine now. I don’t know what precipitated or caused the breakthrough, hopefully that’s the last one for a while.
Nettie accidently tore one of her new contacts while trying to put it in while I was away from home. After talking it over, she has decided that she’s not ready for the hassle of contacts and would rather have a pair of glasses that have the transitions lens so they are both glasses and sunglasses. It was hard for her to admit she couldn’t do them independently and though I offered to do them for her, she didn’t want to rely on anyone to do them for her. She’s a tough cookie! Friday she’ll be getting some new pieces for her wheelchair that will make it run better and look better as well. We’re also going to give it a good washing. On Thursday she’s going with Peter to pick out her new phone, as she is ok for an upgrade now. Very exciting!
Tray is doing great and looking forward to getting Chinese for lunch tomorrow, as he’ll be alone again (provided Cody goes to camp). Other than that, he’s healthy as a horse right now! LOL
Marriela seems to have adapted to her sleep meds a bit better. We give her both Melatonin and the Clonidine now. The Melatonin puts her to sleep and the Clonidine keeps her to sleep (or so we think LOL). Once camp ends, we will increase her daytime meds as well, but I didn’t have an order for the camp nurse to do it so I’ll wait till Friday to start them.
Sergio continues to need O2 and has a terrible cough, but his lungs are clear, go figure. He was up and very playful tonight with Peter and I and it was so good to see. He had his G/J tube replaced at interventional radiology today. We had to wait for an hour and a half for a 10 minute procedure. Frustrating and he truly did not like the process at all either! LOL Joshua and Trayvon were bored out of their minds and have a new appreciation of what I have to do all the time for all of them. Waiting SUCKS! LOL
Well, other than Cody opening the door to the walk-in tub while filled with water and dumping about 20 gallons of water all over my kitchen and bathroom, it’s been a quiet day. Quiet for us anyways.
Till next time!
Renee
________________________________________________________________________________
Hi everyone,
Busy here as usual. All of the children are officially out of school (except Sergio, who will continue with his services uninterrupted). Anyone who has been through this, knows there is an "acclimation" period once the buses stop rolling. Marriela will go to summer school but it doesn't start until July 6th. She and Cody will be attending Jr. Good Days (a local day camp for children/siblings of children - who have/had cancer). It should be a very nice time for the two of them, though Marriela is very nervous about going. Joshua and Nettie will be at Casey’s Place all day, so that only leaves Trayvon and Sergio at home with me on Monday and Wednesday.
Sergio continues to challenge us with trying to figure out what is wrong with him at any given moment in time. We spent the day in the ER again on Wednesday to get the tests run to try and narrow down possible causes of his need for O2, his diarrhea and his lethargy. After speaking with his endocrinonlogist, it was felt that it was best to just go in, get a chest x-ray, lab work, urine and blood cultures and a dose of IM steroids in case this is all adrenal insufficiency. His chest x-ray was negative, his lab work was unimpressive and we’re waiting to hear on his cultures. However, while in the ER his stool samples from a couple of days earlier came back positive for Rotavirus AGAIN!! My poor baby’s belly is swollen and rock hard and he isn’t tolerating his feeds again. Like magic though, after visiting the ER, his breathing improved impressively the next day. However, he was once again, struggling with diarrhea and lethargy. We’ll see how he does over the weekend before we make any more decisions on what needs to be changed. He also saw the dentist today who says, despite the severe teeth grinding, he has very good teeth! YEAH. Sergio did NOT like the dentist at all, but hey, neither do I kiddo! LOL
Joshua saw nephrology and had an US of his kidneys to look for kidney stones. He does, in fact, continue to have one stone that has not grown much, but is in a potentially problematic location, so we will continue to follow with nephrology for another few years to monitor the stones and reflux. Other than staying on the daily prophylactic antibiotic for his kidney reflux, he needs nothing more than the annual ultrasounds of his kidneys.
Marriela saw psychiatry today and we really like the new doctor much better than her old doctor. First, he feels strongly that her doses are far to low and her sleep is a major problem. He also feels that ADHD is definitely a factor in her behavior despite what her other doctor had said. He increased her current med, Tenex to the maximum dose possible. We’ll give it one month and then we’ll move on to something else if it doesn’t work (with the chances of it working only being in the 40ange). He also added Clonidine to her regime nightly. I was thrilled with this addition until we actually gave it and discovered, that over an hour later, she has NO signs of being tired. Not one little bit. Sergio is out within 20 minutes of getting his dose (half of hers!) and yet she is currently riding a tricycle through the house like a mad woman on crack. UGH! Who knew she’d be immune to sleep aids! Help us God!
Nettie had the casts for her new braces made on Thursday as well. She is very excited to get her new braces as her poor ankle is very sore and swollen. However, it didn’t stop her from taking a 2 hour walk today! I almost had a heart attack when I realized that she still wasn’t home an hour and a half after she left! She also picked up her new contacts on Thursday. She loves them, but can’t get them in or out by herself, so I’ll be doing it for now. She LOVES being able to see now though! LOL
Cody is doing great other than some fluid in his ear discovered by the ENT on Monday. Yesterday he was crying that his ear was really hurting, but a dose of Tylenol and a little bit of ear drops and he seems cured thus far. He LOVES the pool and has no interest in anyone holding on to him. He has a full life jacket with a head float and he is fully independent in the pool, scares the crud out of Peter and I though!
Tray is doing very well and enjoyed going over to his new school with Marriela and Cody to check out their new classrooms. I also walked home with him so he could see what it was going to be like to be a “walker”. He was quite winded and it took us a good while to get home, so we’ll see if this will work out for him. I’m afraid that the walk to school will take too much out of him before he is even able to start school. Marriela and Cody enjoyed seeing their classrooms as well.
Well, that’s it for now. Still doing laundry every other day at the Laundromat (ugh) and the brakes on the red van are now squeaking badly. Fun all around. But summer is here, I love the outdoors and looking forward to doing fun things with the kids all summer long.
Take Care and God Bless,
Renee
Thursday, June 11, 2009 6:01 PM CDT
Hi everyone,
We're doing well and currently in a relatively peaceful holding pattern. The only one having any issues right now is Marriela. Poor thing can not stop coughing! I have codein, xopenex, pulmicort and decongestant on board and she's going about 30 seconds between coughs. Last night it started about 2am but today it she started around 6pm and hasn't let up at all. I pray the meds kick in soon so we can all get some sleep.
Cody also has a cold, but hasn't had any other issues except the running nose.
Sergio is doing great after doing 5 days of high dose steroids. His pulmonologist was very pleased with his progress and admitted he never thought Sergio would be able to go with out O2 ever. And now, he sees him without it AND with sats in the 98-99 ange. How cool is that. We even spread his next visit out to 2 months! He's never gone to two months since he was discharged from the hospital at 7 months old. It's about time we start decreasing the number of appointments he has to go to! LOL
Joshua has continued to be seizure free since needing the Ativan for uncontrolled seizures. The same thing happened last time we had to use the Ativan as a rescue drug, he went 3 months until the next seizure. We've decided we just need to make Joshua go into a seizure crisis and use Ativan to pull him out of it every 3 - 4 months and we should be able to stay seizure free! LOL The doctor didn't agree with us, but what he doesn't know won't hurt him. Just kidding guys!
Tray likewise is doing very well. He's playing in the Flag Day Ceremony with his trombone. He was very pleased to be part of the ceremony, not everyone in band was chosen.
Nettie finishes school next Friday. She texted Peter today letting him know that next year will be the last "family/friend" birthday she will have. She is planning on going to the Turning Stone Casino for her 21st birthday with her friend and spending the night there. She even added that Peter and I CAN'T come! That little stinker! She's planning her 2011 birthday in 2009, I wasn't kidding when I said she likes to be prepared.
We had the CSE meetings for Tray and Marriela. They did not go as well as I had hoped. I was offered the option of reducing their services and removing the assistant from their day or moving them to this new model called Integrated Co-teaching which will require both kids to move to a new school. The school they are going to is not appropriate from an educational point but the other schools they offered are either to far away or the staff are totally foreign to me and I would have no one to work with regarding Tray's heart condition or Marriela's anxiety/ADHD needs.
I am meeting with the director and assistant director of special education tomorrow at 3:00 to discuss any further options. I am also in contact with the legal aid society who feels that I do have a case to keep them at their current school with the assistant in place for health related reasons. We'll see how it goes.
Been doing a lot of work around the house. Powerwashed the patio, decks and front ramp. Created a small flower bed out front and planted a bunch of stuff out back.
We drained the pool to finally clean it properly so we could use it this summer and when we went to refill it, the liner ripped to peices. $600 later, we now have a new liner, fresh crystal blue water and a pool person who will come by weekly to keep the water blue. (we are terrible pool people, the water is green withing 72 hours of us being left alone with it. . . very frustrating!). The kids are thrilled to see the water and it's going to be hot this weekend so they can't wait to use it!
Well, Marriela is going to need more meds of some sort, need to go search the medicine cabinet.
Take Care and God Bless,
Renee
Thursday, June 4, 2009 6:24 AM CDT
Hi there everyone!
Guess I should let you know that we're NOT inpatient. After seeing what he went through last week during the weaning of just one medication, we couldn't put him through a lot more of that without knowing if the end game was going to have any benefits. He is happy, healthy and well other than some breakthrough seizure activity and some behaviors - (that we now think are just that. . . behaviors and not seizures). If he breaks through the meds anymore than he already is, we'll have no choice. But, it will probably be much longer than a 2 week admission, as the Zonegran obviously will be a big problem. So, for now, we're staying the course and just addressing issues as they arise.
Today is IVIG day for Joshua as well as baseball for Joshua, Trayvon and Cody.
Sergio went to the pediatrician due to needing O2 during the day as well as at night. He has no other symptoms, just needs O2. We're trying a run of high dose steroids to see if it helps. Yesterday his sats were great and needed no O2 but last night he was back on. We're seeing endocrinology today so he may have some insight for us. I also heard from Genetics yesterday and there is an abnormality at Chromosome 16. We don't know what that means, as it isn't a huge abnormality, but enough to want to test his parents. If they have the same errors, then it probably isn't an issue, but if they don't then this is probably the cause of many of his issues. Working on contacting his birth mom to see if she'll go in and get the labs drawn. Unfortunately, she may be in jail again and I don't know if she can get the labs done in custody. Another project to work on. LOL
Tray is doing great, no issues at all at this time. He's lost 15 pounds and looks and feels great. He's doing well in school and Peter and I are struggling hard with what decision to make for both him and Marriela regarding school. I have contacted a legal aid organization that specializes in education law to see if they have any insights on how we may or may not be able to get them the services they need at the school they're already at. Another project.
Nettie's Self-Determination application has made it to the top 10 in the state for approval!!! There needs to be some minor changes to address some paper keeping issues (won't effect the overall plan) and then it should be good to go in September. She was sooooo excited to know that next school year, she may be able to start hiring her staff to get her out of the house and to work on independent living skills. YEAH for Nettie!!
Cody is doing great.
Marriela really needs new meds, but her doctor won't change them because he's leaving at the end of this month and she'll be with a new doctor then. So he wants the new doctor to make any new changes. I want them to try her on an anti-anxiety med to see if that will help, as the Tenex is no longer really doing anything for her. Other than that though, she's doing well. Next week they're going on a field trip to the Fish Hatchery and she's very, very excited about that. I'm going to see if I can go with them, as I haven't been involved in her class this year, I think she'd like that.
We'll that's it for now.
Take Care and God Bless,
Renee
Wednesday, May 27, 2009 7:18 PM CDT
New Pictures in photo section
Hi everyone,
It’s been a hard day for Joshua. Despite the assurance of the doctors that Zonegran has a very long half life and he should tolerate the stopping of the med with no major issues, that just wasn’t the case. This morning he had 3 back to back seizures, but then settled down. We kept him home for the day to monitor the situation. As the day went on he became more lethargic and “stiffer” in his movements as well as very tired. We took him out for lunch, where he ate well, but was very hunched over and tipsy. As soon as he arrived home he fell into a deep sleep for 3 hours. Upon awaking he played with the kids for a bit and then began seizing repeatedly for more than 20 minutes. I gave him a dose of Ativan and called the on-call neurologist. I was one more seizure away from calling 911. We were advised to give him one more mg of Ativan and could give a third if absolutely necessary. If he needed more than that, we were to call 911. I am relieved to say that the second dose was all it took to break the cycle. I have restarted the med and we’ll have to do this drug inpatient as well. Obviously this admission is going to be very hard on everyone, as it’s going to be filled with seizures and rescue meds to get him through the withdrawl.
We also had Joshua’s CSE meeting today. Peter came along as well to see if he could offer any “persuasion” for what Joshua needs. However, after stating our feelings on what Joshua needs and making it very clear that it is virtually impossible determine if Joshua is using his interpreter or not in the manner they “think” he should. After a good deal of discussion, it was decided to table the meeting and reconvene in August after the drug changes had taken place and we have a better idea of how much better or the same Joshua’s cognitive skills will be.
Not to be left out of the fun, Sergio decided to scare his nurse half to death by having a seizure during his PT session as well. With the Keppra on board though, it was different than his previous ones requiring significant support. This time he just stiffened up, turned very red and every muscle and vein in his head looked they were about to pop. It lasted only a few moments and then he was fine thank God. Hasn’t had one since and seems no worse for the wear.
Marriela also had a bad day after school and was wrought with various anxieties, “needs” (like needing Skeechers, a Nintendo DS, a new bike, a Barbie jeep that’s new and big, as well as a new hat) and demands for food. Finally, I had to separate her from the area where Joshua was having a major problem so we could focus on him for a bit. Fortunately she was able to settle down with some time out in her bed with her weighted blanket on her.
Tray, Cody and Nettie are all doing very well. Nettie was very excited and proud to call in her own meds today all by herself!! Her old nurse, Sergio’s current nurse, showed her how while Peter and I were at the CSE meeting so she could surprise me. I was very proud of her and she is now one more step closer to not needing me any more. I’m happy and sad at the same time. I’m thrilled she’s growing up so well but sad she’s no longer my little girl. 14 years ago she was on her death bed with no one giving us any hope she’d sit or stand independently and now she’s calling in her own medications and walking a mile a day. Truly a miracle.
Well, that’s it for now.
Take Care and God Bless,
Renee
Monday, May 25, 2009 5:31 PM CDT
Happy Memorial Day everyone!
We had the annual Curkendall Family Reunion yesterday down in Horseheads, NY (near Elmira). There were a lot of new faces, as Peter’s dad met his half brother and many of his nieces and nephews for the first time! How cool is that. We found out that Peter’s second cousin lives just a few blocks from us and her daughter is starting school at the same school Marriela and Trayvon go to! It’s a small world.
We’re doing well. Today we went down to the Liverpool Parade which walks right through our little Village. We’ve sat in the same spot every year for the past 4 years, we love it! In a bit, we’re taking the kids to the park and we’re taking a ride on the Tram.
We did speak to the neurologist and we’re all in agreement that Joshua will be admitted and weaned off rapidly from Keppra. We already stopped his Zonegran as this drug has a very long half life and by the time he is admitted, he’ll still have more than 50 percent of the drug in his system. He’s only going to be on the long term monitor for 3 -4 days and then we’ll move to a regular room on the floor as we finish the wean. We anticipate seizures while undergoing this process, so please pray he doesn’t go into a grand mal or status epileptis situation. Then, once the keppra and the zonegran are fully weaned away, we’ll be discharged and come home to start his new medication. His admission date is June 2nd and we plan on being there 10 - 14 days. It will probably also be Joshua’s last day of school, because we won’t have enough medication support on board to send him to school safely.
Sergio had us stumped for a while, and still does to some extent. Last week on Thursday, he just started de-stating and needing his O2. He was as high as 1 liter for several days. He was acting fine all day other than the sats. On Friday he was very lethargic and not looking like himself. Just very quiet and unenthusiastic, nothing we could put our finger on. His evening nurse suggested taking his blood sugar, because he was acting like it could be high. We were very surprised when we found it to be 56! I gave him a bolus of sugar water and hooked him up to some half and half water/OJ for a while. He perked up within 1 hour and back to his normal self. We haven’t had anymore hypoglycemia episodes, but will call the endocrinologist on Tuesday to let him know what happened. He still needs the O2 at night for some reason, but doing fine during the day now. Think the problem is passing on it’s own. . . That’s a first! LOL
Tray is doing well. He had a bad belly ache last night, but after a trip to the bathroom for about an hour, he felt much better and no further complaints since then. I have his and Marriela’s CSE meetings on Wednesday. This is going to be a huge battle to show/justify why we need to keep the kids in the school and program they are currently in. The district wants to uproot them and send them to a new school and a new program called Integrated Co-Teaching model. This model has 10 regular kids and 10 disabled kids. However, our district took all of the kids who are the most severely disabled (academically) and put them all together in clumps of 10 and then are going to throw in 10 “regular” ed kids with them. There will be a full time special ed teacher as well as a full time regular teacher in the class at all times, plus an aide. However, neither Marriela or Trayvon need such support! Both are fully included and doing fantastic, the district just doesn’t get it.
Cody is doing well and has even had some milk products lately with no adverse effects on the poo situation. However, since allowing the milk, he’s been waking up “croupy” the past 3 mornings in a row. Definitely think the two are related.
Nettie is doing well! She is a nervous wreck about me leaving for the hospital already. I have several plans for her to have fun while I’m away.
Well, that’s it for now!
Happy Memorial Day to all of our amazing Soldiers of Peace all over the world. My dad was in the army and I miss him tremendously.
Love,
Renee
Thursday, May 21, 2009 2:02 PM CDT
What a beautiful day! I spent it with Cody (and some of it with Peter as well) watching Nettie and Joshua compete in the county wide Special Olympic games. It was hot, but wonderful.
Joshua did the softball throw and took first place. However, it was a long wait and in the hot sun and he was really heating up. I had brought a chair for him incase he needed to sit along the way, but even that was hard and he missed his other two events while cooling off in the concession stand area where it was airconditioned. However, he did make it out later to compete in the 4x100m dash! He was the third leg and though he wasn’t the fastest, he was doing his very best and I couldn’t have been prouder if I tried. I looked like a complete fool running along side him, cheering him on and taking pictures! Their team earned 4th place!!!
Nettie did four events! I only saw 2 of them though, I was very disappointed, as they did them the same time as the relay Joshua was in. But, she took 3 first places. One in the power wheelchair race, the power wc slalom, and the walker race (never did this one before and she was great!). She also took a 4th place in the softball throw. YEAH NETTIE!
Overall, they’re all doing well. Tonight is IVIG for Joshua. I have been in touch with his neurologist and we’re in agreement that he needs to start a new med. However, he’s already on 4 seizure medications as well as the IVIG and the VNS. He needs to wean off of one or two (I want two to be taken away). The best way to do this quickly, is to do it in the safety of an inpatient setting. We’d like him to be admitted to Strong Memorial as soon as possible (while the children are all in school still for child care convenience) to wean him off of the two meds we chose to go with. Then he’ll be discharged home under very close supervision (probably have to go back to the home health aide to be a 1:1 at all times) and start the new med we’d like to try. He may be in the hospital for up to 2 weeks, so this will be a real strain. But, we’ve done it before and we’ll do it again for any one of the kids. I pray this is the answer to our new seizure activity. I also pray that by taking away some of the meds, we may see some of the old Joshua come through more. These meds are so cognitively depressing and mind altering that we can’t help but hope that with two gone, we’ll see a nice increase in activity level and cognitive skills. Only time will tell.
Sergio is doing well with no further issues at all. He was fitted on Tuesday for a new helmet to protect his head from falls as well as from his own habit of slapping himself silly and slamming his head off the floor when mad. Boy does he have a temper!! I hate the style, but had minimal choices, so hopefully, he’ll get stronger and less likely to fall, as well as break his habit of using his head as a means communicating his dislike to us, and therefore, won’t need it for very long.
Marriela was all excited for today, as she was going to get to go in an ambulance that was visiting the 1st grade classes! She has also decided that 5:30 is her new wake-up time and let me tell you, by 7:30 she’s just dying to be on her school bus headed for school except . . . The bus doesn’t come for another hour and a half!!! Boy do I wish she was at an early school during that hour and a half!! But then she comes home and her meds are all worn off and I think, Thank God she’s at a late school! LOL But, the Tenex IS working and we’re going to stay the course for now and see how she does. Otherwise, she’s doing great!
Tray is happy and healthy at this point. He is indecisive about what instrument he is going to play next year. He is thinking the clarinet, but I think this would be far to difficult for him, so we’re going to discuss it further over the summer.
Cody is doing great and we’re just so happy that he has a place in the Universal Pre-K program for next year. He’s so happy to know he’ll be getting on a bus as well when school starts, how cool is that!
Well, I have to go cool the car down to get Joshua off to access his port at the hospital. Then we have baseball for Cody, Joshua and Tray and then home to do IVIG.
Have a great day and God Bless,
Renee
Tuesday, May 12, 2009 7:04 PM CDT
A day of frustrations:
Joshua's seizures have returned with a vengence. Yesterday he had a terrible day behaviorally, actually requiring physical restraint to prevent him from injuring himself or the staff. They finally got him to the nurses office where they laid him on the bed and instantly fell asleep for over an hour. Today he entered the room, after being very, very happy, and began pacing and jumping up and down in a very irritated way, when offered the option of going to the nurse, he laid on the floor in fetal position and instantly fell asleep (in the middle of the classroom) and stayed there for 11/2 hours. This is not Joshua. Then tonight, at his baseball game, he had a big drop seizure. He went right over the bench and onto the ground where he was tended to by another players parent until Peter realized what was going on and came in from pitching. Then he had another big one as we pulled into the driveway following the game. I spoke with Rochester today and the NP was going to discuss Joshua with Dr. Henry to see what changes we can make to get him back on track. She did inform me that the behavior (anger and giddiness) are both types of seizures as well and I need to call the school to let them know that Joshua is not in control at those times. They need to supervise him, but not "force" him, as the seizure just needs to run it's course and then he'll need to sleep. I hope they have another option, as I know where running out of things quickly now.
Sergio had a rough night last night and actually needed his O2 for the night, but a much better day, and tonight, so far, no O2. We'll see!
Other than the seizure, Cody, Tray and Joshua all had fun at their respective games. Peter stayed with the boys the whole time, as he was just having so much fun! I stayed with Cody and let me tell you, other than batting, 3 year olds have no interest in baseball! LOL I spent most of my time bribing Cody (as did most of the other parents with their children) to stay on the field until the other team was done batting. Very cute, but very long hour. LOL
Marriela recieved a very good report at school today when I met with her teachers. I was thrilled to hear this, as we're seeing more and more terrible behavior at home. She is much more hostile (openly at this point) and irritable. I am going to speak to the psychitris tomorrow to see what other options we can try, as she is currently not manageble as she is. Sigh.
Nettie as usual is doing great. Cody is still holding his own with the nebulizers and my cold came and went in just 3 days! YEAH.
Till next big update,
Take Care and God Bless,
Renee
oh yeah, it was my birthday today, and my kids family shared lots of love with me, as well as a huge cake! I love my family so much. But, I don't like having to have birthdays. LOL
________________________________________________________________________________
We're HOME!
Actually, we came home last night, but had lots of stuff to do so didn't have time to update.
Sergio behaved himself and after we all agreed to get him restarted on Keppra for the seizures, it didn't seem logical to stay there any longer.
With that said, we're now struggling with the new "reality" of the situation. We have to come up with a plan for when we leave the safety of the house, where all of his equipment and emergency meds are. Do we carry his SAT monitor with him at all times now, do we have an ambubag with us as well as the O2 again, do we carry his rescue meds everywhere? What is safe vs. what is necessary? It's a bit more complicated due to the obvious severe respiratory issues he had with the seizure, unlike Joshua who has never had such events. So we're working on finding a new "comfort" zone for outings.
Nettie was beyond thrilled that I was home so quickly. She stresses so much. She told me she thought that Sergio had died and we were trying to "protect her and just didn't want her to be sad, so we wouldn't tell her the truth". I put the phone up to Sergio where he promptly yelled on cue about having something the way of his rings and she was elated to hear him. Poor thing is always anticipating terrible things. I am going to see if meds are an option for her to deal with her anxiety.
Speaking of Anxiety. . . I'm not sold on this Tenex. I don't think the afternoon issue is improved for Marriela at all. I'll give it until Friday, but that's about it, then we'll need to look at something else I think. She had a baseball game tonight and she did great! I was so suprised she hit the ball on her third try! YEAH!!!
Joshua is doing well. He did have a seizure since lowering his Klonopin dose, so we'll see how it's going. But, this week he's had all happy faces and hasn't sleep at the nurses yet. So, I think the change is a good one.
Tray is having his band concert tonight. Peter had to go with Cody, as I stayed at Marriela's game with Nettie. I hope he does well! He's been feeling great and I have given him several nights reprieve from his O2 and he's sleeping like a log, so I'll monitor him to see if it makes any difference after all.
Cody continues to need his nebs, but hasn't progressed to needing steroids at this point. He is active and eating and playing, so we'll just ride it out for now. He's his own worse enemy, he manages to hurt himself at least several times daily now, he's such a boy! LOL
Well, that's it for now.
Till next time!
Take Care and God Bless,
Renee
Monday, May 11, 2009 10:37 AM CDT
Happy Belated Mother's Day, especially to those who are dealing with the above and beyond of mothering and do it with grace and a quiet dignity.
With that said, I come to you from University Hospital again. Sergio bumped his head yesterday on the floor while playing (nothing more than his usual bumps he does many times a day) and had a seizure. I was so suprised I wasn't even sure what I was seeing was, until I put him on the monitor and saw that his sats were only in the 50's! He hasn't been on O2 for almost a month, so no supplies were out and the ambubag was in the living room with the portable tank. By the time I got everything in place, he was doing fine, so I just sat him in the swing and put on a new probe to be sure we were, in fact, seeing the right numbers. Then he did it again, his whole body started shaking and he desatted to the 40's this time. I ambubaged him and told Peter we had a problem. After the third one, I gave him a dose of Diastat and packed him up and brought him to the ER. When we were in the Triage area, he did it again and had everyone scrambling as they bagged him and saw him turn a pretty shade of blue. All in all, he had 9 seizures, 6 of them resulted in him needing a lot of support to get him back to base line sats. He also needed supplementary O2 for the rest of the night. They gave him a big loading dose of Dilantin and it seems to have done the trick, as he hasn't had anymore since getting the meds. We're going to talk with our neurologist out at Strong Memorial to see what the choice of med for home should be. Dilantin is not a good choice for long term treatment, as it causes lots of issues with gums and liver, something he doesn't need added to the picture.
Today he is back to baseline and sleeping nicely in a swing following his EEG torture treatment. For something that doesn't cause any pain, you'd have thought we were making him sit on hot coals! LOL Hoping maybe to get out of here tonight or tomorrow if he behaves himself (ohhhhh, I shouldn't have said that! That's what I did in March and he kept us there for 2 weeks! Brat.) LOL. Looks like he'll be on seizure meds for life now and we have to get a helmet as well. Sigh. At least it's something we can see and put a name to, unlike he's done in the past where we couldn't figure things out for weeks.
Till next time!
Take Care and God Bless,
Renee
Saturday, May 9, 2009 7:44 AM CDT
From now on, anytime your read a good report on here, YELL AT ME!! I should know better by now than to say anything positive, because one of the little stinkers will prove me wrong one way or another.
The night after the wonderful pulmonary appt. where I reported how well Cody and Sergio were doing, with no extra treatments needed, no croup to be seen, no asthma issues at all for the past 3 months. . . Cody gets a bad case of the croup and Sergio’s asthma is flaring badly. Sigh. In addition to that, Sergio, is no longer tolerating his feeds again. His stools are awful as is the gas that little body is able to produce!! ICCKKKY! So I have to bring a stool sample up to the peds office this morning and we’ll probably start him on Flagyl, an antibiotic used for bacterial, intestinal overgrowth, sometime this week. This is always the big worry with Sergio, as he has no room to lose any weight and thus far, for the past 3 days, he’s only been able to get half of the formula he needs due to pain and gas and stooling.
Cody is doing neb tx now and well see how he does over the weekend, if he doesn’t improve, we’ll start his steroids tomorrow or Monday. Hopefully, that won’t be necessary.
Joshua continues to have behavioral issues at school and he’s falling asleep for as long as an hour every morning in the nurses office. So today I cut his Klonopin dose in half for the morning dose, we’ll see if this is enough to keep away the seizures, but not enough to change his behavior and make him so sleepy every day. I’m looking into another clinical trial for him to see what else is out there to help control his seizures without having to use so many drugs and all of the side effects that go with them.
Tray had a great run with his sats, but yesterday I rechecked them after letting him go without O2 for two nights, and they were back to his 88-90 range again. Not horrible, but not the beautiful 95-97 we had seen for those 3 days. There doesn’t seem to be any rhyme or reason to it all. So we’ll see if the night O2 brings them back up again. Other than that, he’s doing well.
Marriela is now on the Tenex AM and PM. We see a “calming” of the behaviors, not a reduction. But, that’s all I really was hoping for anyways. After school was still a very trying time for all of us, so the doctor said to go ahead and do another dose when she arrives home from school. We’re still assessing to see if it’s helping or not.
Nettie is doing great. We’re playing our next hair style and think we’re going to do some micro-braids over the Memorial Day break. It takes a long time, but lasts a long time as well. Should get us through most of the summer.
Today is the Village garage sale and we take the kids every year and walk most of the Village picking up stuff that we don’t need and end up throwing it away in a month or so, but the kids LIVE FOR THIS DAY!! I have created Garage Sale die hards. . . My work is done. LOL
Till, next time,
Take Care and God Bless,
Renee
Tuesday, May 5, 2009 7:15 PM CDT
Little league is in full swing. Peter and I are coaching Joshua and Trayvon’s team, Marriela and Cody are also playing. Unfortunately, Cody is playing on the same day at the same time as Joshua and Tray so we have to take turns coaching and watching Cody. We were asked to fill in for Cody’s coach last week and I had such a blast running with 3 year olds, trying to teach them first, second, third bases and home. We ran and ran and ran and then hit and ran some more, so much fun!! Unfortunately, the big kids, don’t like to run and I don’t know what I’m doing beyond the bases LOL. It should be interesting at least! LOL
The kids are doing well. Marriela has started her new med, Tenex, and I do believe it is helping. She did not visit the nurse the past two days (she goes at least once a day for anxiety related “pains”) and got all of her stickers throughout the day. Very good for her. We will go to twice a day starting on Saturday after talking with her doctor on Friday.
Cody went to pulmonary today and got a clean bill of health. Since taking him off all milk and going to soy, he hasn’t needed any reflux meds and has had no croup or asthma at all. It has also helped tremendously with pooing! You can tell within a few hours if he’s accidentally been given milk, as he has belly pain and can’t go for days. He loves his soy milk so no skin off his back. LOL
Sergio also went to pulmonary and we made some big changes for the good!! He has been off all oxygen for over 2 weeks now and doing fantastic. Today we stopped the remaining orapred and he is back on only the hydrocortisone again. We have also cut his diuretics in half and in two weeks, if he’s tolerating the reduction, we will stop the diuretics all together. Very exciting stuff. Next month, if there are no setbacks, we will try to convert his nebulizer treatments over to puffers with a spacer. He hasn’t gained any weight back though and that’s something we will have to continue to address with his feedings. We also saw Genetics where much more extensive testing of Sergio’s chromosomes was ordered. We also re-ran the organic acid testing on his urine due to some detected abnormalities in his urine a few weeks ago. However, the abnormalities may have been due to diluted urine and/or the formula he is on. So we had him fast for 15 hours prior to collecting his urine so it was concentrated as well as free of his formula. They also ran a test to see if he has a L-caretine deficiency. This could also explain why he became so sick so fast and why he lost so much muscle and subcutaneous fat. The results should be in within the next two weeks for all the different things they tested him for.
Joshua seems a bit out of it lately. He’s having more difficulty with word finding and just seems in general in a bit of a fog. I have scheduled his IVIG for after his baseball practice on Thursday. I’ll take him in after school and then wait until he gets home from practice to run his med. I’m going to call the neurologist as well to see if the Klonopin can cause this kind of mental fog. Otherwise, he’s doing ok.
Nettie is doing well. She is anxiously awaiting the end of school and for the summer to get here. She received the disappointing news that Camp Hole in the Woods, will not be having their Alumi program this year. She LOVES this camp and was very sad that she will not get to go this year. Hopefully, next year, fundraising will pick up and they will be able to add the week back on to the schedule.
Tray was acting very tired and he even vomited on Sunday, though I’m fairly confident it was from over eating at Sergio’s birthday party. But to be on the safe side, I checked his SATS and was beyond shocked at the reading. . . 97 WHAT!!! He hasn’t been at 97 n over a year! I thought I’ll wait a day or two and see what we get. Tonight, he was 95 Unbelievable. I don’t know what has changed, but it’s a good thing, that’s for sure. So we’ll just ride the wave of great SATS and see how it goes. Otherwise, he’s also doing great!
Sergio celebrated his second birthday with us as we helped him ring in his THIRD year! Yeah for Sergio. He was very, very cranky by the time we actually got to the cake and presents part, but he loved his gifts after his nap. Daddy and Mommy got him a new water table (hoping this reduces the God awful desire to seek out any and all available toilets to splash in). He seems to like it, but the toilet is still a powerful attraction. LOL
Well, that’s it for now.
Take Care and God Bless,
Renee
Wednesday, April 22, 2009 3:55 PM CDT
Hi everyone!
NEW PICTURES UP IN PHOTO SECTION!!
Still happy that spring is here. Even happier that spring break is over!! phew. The kid's cousin, Justin joined us again for spring break and we had a nice but busy time. He's in several pictures up above.
We've seen several doctors this week. Tray saw cardiology where we learned he lost one pound and grew 2cm. His echo was unchanged from last one 3 months ago, so that was good and his EKG is also stable. We didn't change any meds, as he's already on 140mg of lasixs a day and any more and he'll need frequent lab work. I expressed my concerns about his tiredness and his need to sit during play activities. The doctor (and I) agree that there isn't much more we can do and to just monitor him. It may be that with the warmer weather here and he's more active, we're just seeing what his limitations will be as he tries to do more. Other than that, 3 more months till next meeting.
Marriela saw the psychitrist today and we're going to begin treatment first for anxiety disorder. There is still the question of whether he has ADHD, but until we tame the anxiety we won't know for sure. Next, we'll address any depressive behaviors we see if necessary. But, we're only doing one med at a time. Today she had to have an EKG rule out any cardiac arrythmias prior to starting the new med next week. All was well and I look forward to getting her off the Abilify (which is no longer working!!) and onto something that may work.
Joshua had his physical and PPD. Nothing of note there. He is having a referral made to nephrology for a follow-up on his kidney reflux and a referral made to the communications disorder unit for a new audiogram that the school is requesting. He's all set for camp now as is Nettie, Marriela and Trayvon.
Sergio is doing very well and continues to be off of the oxygen full time. He's tolerating his feeds very well. However, today I had to fire his speech therapist and OT. The speech therapist has made feeding a huge goal of hers for Sergio. We have expressed several times that he is not medically able to pursue this goal right now due to having a poorly functioning stomach, thus the reason all of his food is going into his J-tube. He needs to work on his communication and oral skills much more, but she refuses to work on these. The OT was doing great, but she has been sucked into this same mind set with the speech person, so I had to ask that they be replaced. Other than that, we're begining to plan his 3rd birthday party and can't believe a year has passed already.
Nettie is great and came home from Counseling with the goal of memorizing her social security number. She is working so hard to become independent!! My little baby.
Cody is doing great as well. We put his name in for the universal Pre-K that our school district does, but they are already over their quota so he's in a lottery. We pray his name will be pulled and that he will be able to attend the same school as Marriela and Trayvon are being transferred too.
Well, that's it for now.
Take Care and God Bless,
Renee
Thursday, April 16, 2009 5:08 PM CDT
Hi everyone!
Soooo sooooo sorry that it's taken me a while to get an update on here.
Fear not, all is well. Actually, things are really well right now. Spring has arrived, the kids are all healthy and SPRING is here!! We got a lot of yard work done yesterday and today. It looked like we had taken a jungle out of our backyard there was so much out front. The Village picked it all up and now we start making the next piles for the next pick up, two weeks from now. The kids all helped and it was wonderful to work as a family, they really enjoyed being big enough to be allowed to carry branches, vines and sticks up the hill to the bins. I found it to be cheap labor. LOL
Sergio has actually made wonderful improvements!! He's back to baseline with his physical skills, has made very nice gains in his cognitive skills and best of all, has made amazing progress in his medical status. He has been off of ALL oxygen for 6 days now. NONE, not even at night!! His SATS are better than mine! He's weaning down slowly on his steroids and is now only on the feeding pump for 15 hours a day, which means he gets to be off for 9 hours. He is getting in trouble all the time now, like going up the big flight of stairs, playing in the toilets, dumping the dog dishes (especially the water bowls) and pulling everything he can get his hands on, off the tables. It's wonderful and nerve wrecking at the same time! LOL
Best of all, he's an official CURKENDALL, poor thing. He fits right in and it's so nice to know that all of his care is my responsibility now, no more calling the DSS for permission for care and such.
The rest of the kids have all been to the dentist and got great reports. Joshua has a small issue with one of his molars. Due to chemo, he has no adult molars to come in. So he needs to retain his baby teeth for as long as he can. However, apparently a small, very malformed "toothbud" did develop under one of those baby molars and is potentially going to push out the baby tooth. So we are making a trip to the oral surgeon to pull it in an effort to save the baby tooth. If we can't, he'll need to wear a retainer to hold the space open until he's 18 and can get a dental implant to fill in the missing tooth.
We're making some nice progress with the psychiatrist and Marriela. He and I had two very long meetings and went over all of my concerns. Next Wednesday he's meeting with Marriela and I have to bring some behavioral charts her teachers are going to fill out. At this time, he is leaning towards severe depression and extreme anxiety as her overriding issues, NOT the ADHD as we had been thinking. In fact, he's fairly confident that she doesn't have ADHD at all and most of her "hyperactivity" is related to her high level of anxiety in new and stressful situations. The more we look the more we couldn't agree more!! I pray that we're moving in the right direction for getting her and us the help we need to help Marriela be happy and joyful again. YEAH!!!
Tray has been more out of breath lately, but he's also enjoying being outside much more which means he's moving more and doing more activity. So I am leaning towards that as his source if issue. However, he has a cardiology appointment on Monday that was scheduled several months ago, so that makes me more comfortable that we'll nip anything in the bud that may be brewing.
Joshua continues to have some small seizures, but other than that, he's doing well.
Cody, is doing very well and reall, REALLY likes the Scooby-Doo movie (where the characters are real and not the cartoons).
Nettie is doing awesome! She went to Casey's Place three times this week and tomorrow we're going to Beaver Lake where she is excited to do the "easy" LOOP in her walker. She's only ever gone on the trail in her wheelchair.
Well, that's it for now. Gotta go paint Sergio's room, now that his ceiling is finally done and painted as of today.
Take Care and God Bless,
Renee
Thursday, April 2, 2009 5:27 PM CDT
Sorry, it took me a while to figure out how the heck to access my page to do an update, as Caringbridge has made quiet a few changes lately. It may be almost time to convert to the new format so that you can be notified of updates and such. I guess I just need to find the time. . . like that's going to happen soon. LOL
The kids are all doing well (shhhhh, don't tell them though, as every time someone lets them know, one of them gets sick. . .).
Sergio continues to make some very nice gains and is now upto 52cc an hour through his J-tube. He saw pulmonology yesterday and we got a nice report. However, (there's always a however isn't there) he did share with me that he would have NEVER allowed Sergio to come home on the O2 level he was at discharge. In fact, he would have strongly recommended we trach him when he went to 4L for those 3 days. I dread the next time he gets sick, as I'm going to have to fight off this doc with a hammer to keep him from wanting to trach my baby.
We also heard from Genetics and though he has all the normal number of chromosomes, he has something "funny" about his Y chromosome that requires further and more detailed testing to see if we can determine a genetic undercurrent for his numerous issues.
Great news. . . April 9th will be Sergio's Gotchya Day!! We go to court at 9:00 and we'll be an official gang of 8! YEAH.
Joshua is going to Casey's Place for the weekend. Thus far the new increase in meds seems to be holding the vast majority of his seizrues at bay. No more drop seizures since the last one, thank God.
Tray's camp application was sent today. He missed it last year due to being so sick and in the ICU. He is so much happier and healthier right now and he's going to do great at camp. We're going to have to pack his concentrator and sat monitor and ambu bag etc for the trip and for camp, but hey, what's a bit more in the van. LOL
Marriela is off to the new psychiatric therapist on the 10th for her first official consult. We're pretty sure there will be some med changes at that time. I'm actually very excited since I now know we're not looking at any severe mood disorders and such. Hopefully he'll have some nice suggestions on how to address her hyperactivity, anger issues and anxieties.
We just found out that the Liverpool School system will have a universal Pre-K this coming school year and it's at the same school that Trayvon and Marriela are being transferred to. So we'll have 3 kids at the same school next year!! YEAH. Cody will love riding the bus and going to a "big" school like his sister and brother AND he is so ready for it!! He's smart and needs to be around the other kids.
Nettie is getting her SubQ IG right now and it's going fine. She is walking anywhere from .5 to 1 mile a day!! I can't believe my little girl! She comes off the bus, rain or shine and changes her shoes, gets her dad's GPS watch and her walker and off she goes. If she walks less she walks faster, when she walks farther, she walks slower. Amazing that she is even able to ascertain what is too fast or slow for the distance she is walking. She truly is an inspiration.
I'd like to say that I'm enjoying my new mattress, but I'm sad to say, I'm not yet. Between being so sore from all of the lifting, moving and ripping out of the carpets that we've done, my back is still hurting. In addition, Cody isn't staying the middle and is taking up my WHOLE side squishing me into a 2 inch space. Tonight, we're going to try setting him up in the boys room to spend the night in there. Even if he stays for a few hours, that's better than none at all! LOL
Well, until next time!
Take Care and God Bless,
Renee
Friday, March 27, 2009 11:50 AM CDT
Hi everyone,
Today was the start of a very nice day. Sergio finally slept a full night!! He awoke happy and smiled and asked daddy to pick him up today. He's played well and only needs you to hold him every few hours or so. HUGE improvement!! I did a new collage and you can see how much weight he's lost since he came. The first pic is of him on the steroids and the one next too it was today. He has lost all of his muscle and has just a thin layer of fat remaining. But he is tolerating his feeds well and we are getting some quality calories into him now. Hopefully he'll fill out some in the near future.
We saw the endocrinologist yesterday and he ran some new tests on Sergio's urine to see if he has an underlying metabolic disorder. We also checked his pancreas and thryoid to be sure neither one were causing him any issues.
I think, we're finally getting into the full swing of recovery now.
Our honeymoon period for Joshua's seizure free life has come to an abrupt halt. He had several small seizures over the past few days, but last evening he had a full drop seizure. He had been leaning forward to turn up the volume on a radio and just went face first into the wall and a chair. He split his lip, bruised his cheek and got a goose egg on his head. Very scary and frustrating. So tonight we'll increase his Klonopin and hopefully the IVIG will kick in soon to help as well. SIGH.
The rest are doing well. I am placing a call today to see what the results of Sergio's gentic testing and I'm a bit nervous as to the results.
Cody has been awesome and as long as NO ONE gives him milk, he's happy! Give him milk and we have a pooping disaster (constipation of the maximum level!). He's loving the new soy stuff Peter started him on last week and doing well with it.
Tray is doing awesome, as is Marriela.
Nettie started her new Subq IG therapy yesterday. A nurse came out to show me how to use the pump (very simple and could've figured it out without her, but hey, she needs a job too LOL). Nettie is now on Vivaglobulin and did great with the new med AND it was done in just over 2 hours instead of 3 hours. Very nice for me.
Tomorrow is Nettie's birthday party and Sunday my "baby" turns 19 years old. How is that possible!!!! UGH! I'm not a day older in my mind. LOL
Well, that's it for now.
Take Care and God Bless,
Renee
Wednesday, March 25, 2009 9:56 AM CDT
Hi there everyone,
I'd love to say all is great, but thus far, Sergio has continued to keep us on our toes. After much discussion about admitting him again for a PICC line and to start TPN, it was decided that maybe, just maybe he is lactose intolerant and we should try a new formula. So yesterday we did just that and what a difference! He is tolerating more food and at a faster rate than he has in almost 4 months. We are going to continue to pushing his rate up, so he can get the calories he so desperatly needs to start his recouperation from this latest set of infections.
However, the wonderful thing called Sleep, has eluded him now for weeks. But, the past few weeks have been expotentially worse. He is only sleeping in one to 3 hour spurts with a total of about 4 hours a night. He spends what time he's not sleeping either sitting in his swing ignoring the world, or screaming, crying and abusing himself by smashing his head into the crib, the floor or with his fists. It's been one the most trying experiences of my entire parenting life. As of tonight we are are going to give a medication called Clonodine to see if we can't induce a good solid REM sleep. He is neurologically raw, every noise, every move, every touch, causes him distress. We are unable to provide comfort and have resorted to wrapping him up in a swaddle to prevent him from hurting himself. Please send prayers for the sandman to come and pay a long over due visit to my baby boy.
Joshua has begun having seizures again. He had 2 yesterday and one the day before. Thus far, he has been sitting and able to self-report when he has had one. The honeymoon is over. I will call his neurologist today to see if we can increase his Klonopin, as that was definately the drug that had the last big positive effect on his seizures. Other than that, Joshua is doing well.
The rest are also doing well. I'll do a better update in a day or two, but Sergio is screaming and I hear him beating himself senseless.
Take Care and God Bless,
Renee
Sunday, March 22, 2009 3:00 PM CDT
Hi everyone!
Well, I'm home and updating on my own today. Thank you so much Stacey for your help with the updates!
We got home about 8:00pm on Friday night. He went through the process of getting the G-J tube beautifully and he started off strong on the full strength feeds. But, about 4 hours into it he started to swell again (not just a little but so much so his belly button pops out and he looks like a huge Buddha baby). So we are back down to only 25cc per hour and this is not sufficient for nutritional needs. Therefore, next week we will have a PICC line placed and he will begin TPN (IV nutrition) to allow his gut to rest and heal. No one knows what the original catalyst was to slow his tummy down and develop the dumping syndrome in the first place, but we do know that the Rotavirus has made a bad situation far, far worse. He went without any nutrition (except IV hydration) for almost 6 days as he recovered from the RSV and then was hit with the Rotavirus. He is still on high dose steroids, but today we were able to begin the weaning of his high dose and frequent nebulizer treatments. He is either quietly content or very noisly discontent, no happy medium. I pray that as we wean his steroids and nebulizer treatments and once he gets some nutrition into him, his old happy demeanor and personality will come back. He is just so miserable for the most part right now.
The rest are doing very well. Marriela is as "talkative" as ever and I'm having to "readjust" to the constant barage of Marrielaese in my ear.
Cody had a few very bad days of constipation and after a large dose of Miralax, had a day of vomiting and diarreha. UGH!
Tray is stable as a rock other than a bad cough he had for a few weeks. Doing well otherwise.
Joshua has been "seizure free" for almost 2.5 months now! It's so hard for us to believe and let our guard down but he's doing so well, we're trying to learn how to enjoy it while it lasts. He did have a stomach bug last night (thinking Cody may have shared the joy) but recovered by morning. He is also 2 weeks behind on his IVIG now due to me being in the hospital. We should be able to do it this Tuesday with no problem and be back on schedule.
Annette is doing fantastic. She missed me tremendously while I was away and texted me multiple times a day as well as called to encourage me to come home.
Peter and I went today and bought our first new bed in about 10 years. The one we bought then was cheap even by standards back then and my back has been paying the price for the past 5 years. It was so fun to just lay on every bed in the store (with Cody and Marriela between us). But, it was hard to chose, because every bed felt so friggin' good compared to ours it was hard to say what we liked and just felt good on. But we settled on a Martha Stewart King size bed (I loved that it was a "green" bed - made of all natural materials)that both Peter and I felt was a nice compromise between the "too soft" pillow top and the "too hard" temprapedic. Can't wait for it to be delivered on the 31st!!
Till next time!
Take Care and God Bless,
Renee
Friday, March 20, 2009 2:47 PM CDT
Hey again! It's Stacey, Renee's nurse writing for her. She asked that I give another quick update for everyone trying to stay informed. Well, tonight should be their long waited arrival home!!! Everyone is very excited to say the least. Sergio went in early this afternoon and had a G-J/Tube placed to help him tolerate his feeds and give his poor belly a rest. It generally helps decrease symptoms of reflux or aspiration as well so it should really benefit him. Renee called me and said he did great and is already receiving his nutrition through the new tube and so far is tolerating it well. He is also back down to only 1L of O2 which is great and his lung sounds have improved. Renee is very anxious to get home to her children and her hubby. The little ones (Marriela and Cody) have Soccer tomorrow and their party so it is great she will be home to go. Other than that all is well with the other children and again I will have Renee get on and update more on the other kids and Sergio when she gets home. *Sending lots of love their way*
Tuesday, March 17, 2009 12:15 AM CDT
Hey everyone! My name is Stacey. I am Renee's nurse for her youngest child, Sergio. Renee asked me if I could get on the site for her and update her page as she has been in the hospital for almost two weeks now with Sergio and does not have access to the internet. Sergio started out with symptoms of Respiratory Distress two weeks ago and was admitted into the hospital. He was then discharged after three days and made it at home for only twelve hours until he was admitted yet again via ambulance. The little guy was then diagnosed with RSV. Just as Renee and the hospital staff thought he was recovering and was going to be able to go home to continue his care he ended up with the rotovirus. Needless to say- they are still in the hospital and it has been one complication after another. Peter is at home with the rest of the children and trying to be Mr. Mom while continuing to work. I have been trying to go in every few days and help out if I can but it is dificult for them now worrying about Sergio, being apart and trying to care for the rest of the children. I will let Renee update on the rest of the kids when she gets home from the hospital and on Sergio with more detail than I provided. Other than all of the children missing their mommy they seem to be doing great with their daddy!!!
My thoughts and prayers are with the family and I wish Sergio the quickest recovery possible.
Thanks,
Stacey
Tuesday, March 17, 2009 12:15 AM CDT
Hey everyone! My name is Stacey. I am Renee's nurse for her youngest child, Sergio. Renee asked me if I could get on the site for her and update her page as she has been in the hospital for almost two weeks now with Sergio and does not have access to the internet. Sergio started out with symptoms of Respiratory Distress two weeks ago and was admitted into the hospital. He was then discharged after three days and made it at home for only twelve hours until he was admitted yet again via ambulance. The little guy was then diagnosed with RSV. Just as Renee and the hospital staff thought he was recovering and was going to be able to go home to continue his care he ended up with the rotovirus. Needless to say- they are still in the hospital and it has been one complication after another. Peter is at home with the rest of the children and trying to be Mr. Mom while continuing to work. I have been trying to go in every few days and help out if I can but it is dificult for them now worrying about Sergio, being apart and trying to care for the rest of the children. I will let Renee update on the rest of the kids when she gets home from the hospital and on Sergio with more detail than I provided. Other than all of the children missing their mommy they seem to be doing great with their daddy!!!
My thoughts and prayers are with the family and I wish Sergio the quickest recovery possible.
Thanks,
Stacey
Tuesday, March 17, 2009 12:15 AM CDT
Hey everyone! My name is Stacey. I am Renee's nurse for her youngest child, Sergio. Renee asked me if I could get on the site for her and update her page as she has been in the hospital for almost two weeks now with Sergio and does not have access to the internet. Sergio started out with symptoms of Respiratory Distress two weeks ago and was admitted into the hospital. He was then discharged after three days and made it at home for only twelve hours until he was admitted yet again via ambulance. The little guy was then diagnosed with RSV. Just as Renee and the hospital staff thought he was recovering and was going to be able to go home to continue his care he ended up with the rotovirus. Needless to say- they are still in the hospital and it has been one complication after another. Peter is at home with the rest of the children and trying to be Mr. Mom while continuing to work. I have been trying to go in every few days and help out if I can but it is dificult for them now worrying about Sergio, being apart and trying to care for the rest of the children. I will let Renee update on the rest of the kids when she gets home from the hospital and on Sergio with more detail than I provided. Other than all of the children missing their mommy they seem to be doing great with their daddy!!!
My thoughts and prayers are with the family and I wish Sergio the quickest recovery possible.
Thanks,
Stacey
Friday, February 27, 2009 4:21 PM CST
Hi everyone,
I am so sorry for leaving you all dangling for so long (especially you, Jeff).
Obviously, Nettie landed in California, she had a fantastic week on her Mission’s trip and she was trying to weasel another week out of us. What a fantastic experience for her and it has really piqued her interest in checking out more travel opportunities for the future.
You can see pictures of her trip and a short blog of the week at http://missions.liverpoolchurch.com/.
I had started to do an update the other day after getting a prompting call from a family friend, however, Sergio and Cody decided it was the exact right time to introduce the stomach flu to everyone. Following Cody and Sergio on Tuesday, we had Marriela and Trayvon on Wednesday and Peter and I yesterday. It’s a short but powerful bug and not one that I would wish upon my worst enemy! Marriela is the one one though that developed a high fever with it and she has yet to eat anything since the day before yesterday, but otherwise she seems much better.
Nettie and Joshua have yet to get it, but due to IVIG they may not get it. That’s the wonderful thing about IVIG, it offers some wonderful protection to the two with deficient immune systems.
Other than this weeks little vomit fest, we had actual been enjoying a very nice run of health. Here’s praying we get back to that status again!
Our bathroom is in full swing now and today the tub was put in. It’s going to be so wonderful for Joshua! Not to mention that I may just have to enjoy some of those wonderful jets in the tub as well. LOL Sergio is doing ok in the dining room while the work is going on. However, his ban on sleep continues. We have decided to go with another night nurse to see if that helps the situation. Our other one was a bit older and had difficulty moving and doing things in the dark and such, so there was often lights on, and she jostled his crib frequently. I’m hoping that the new one will be able to get a better routine down. We’ve also had difficulty progressing his feedings. He should be almost on full rate of 120 cc’s and hour for 12 hours but we can’t seem to get past 35cc’s and hour before he begins to gag and retch. I just don’t know what more we can do, other than be patient and let his little belly make progress at it’s own rate.
Joshua continues to be relatively seizure free. We’re seeing small ones, but nothing that would make us change our course of action. He has had a few setbacks the past day or two with behavior at school, but yesterday he pulled it together and this morning he cruised through his homework beautifully.
Marriela is doing well. We had our appointment with Child Psych and it was very helpful and had lots of good info to share. The first and best thing about the whole appointment was the info that she probably does NOT have Bipolar disorder. We also discussed the fact that Marriela has some wonderful positives when it comes to her ability to be soothed, she doesn’t go off to lament by herself, she doesn’t have days on end of sleeping and can be comforted by both external means and internal means. She is also missing the aggressiveness and aloafness that raise red flags in the mental health world. Most likely she has very severe ADHD. However, we were also told that she probably has Fetal Alcohol Syndrome (FAS) and this can result in severe internal disregulation and actually changes the way the bran process medications. Which explains why the typical ADHD meds didn’t do anything for her! The recommendation was for her to come in for a full formal diagnostic work-up. She will be assigned a play therapist as well as a doctor to manage her medication needs. So far I like the set up they have and look forward to the next step in the process.
Cody is doing well now that he has finished with the stomach stuff. He has just had another growth spurt and seems to have just sprouted straight up (definitely not our!) LOL.
Tray is doing very well. His last PT/INR was low (as I had predicted it would be) so we have increased his coumadin one night a week to see if that’s all it takes to bring it up a bit more. Other than that and his brief bout with the tummy crud, he is doing great!
I took Sergio to a feeding evaluation today and came away with some good ideas on what to do to improve our chances of getting him to eat orally. All of the things we need to do will take time and effort, so we’ll see how they go. Sometimes, with so many things on our plate, you have to pick and chose those battles that really have potential for success and to meet the immediate needs and issues.
I also went to a transition meeting for Nettie today where she told them her lifes plan. Everyone is so shocked when Nettie so concretely lays out what she wants in life. She has a plan and has every intention of going through with her plan and we’ll be there to help her attain her plan!
Well, that’s about it for right now.
Sergio has been digging in his right ear for the past 3 hours and screaming for the past hour. Fairly sure he has an ear infection, ugh. No time to go to a doctors appointment tomorrow with coaching soccer an all, so we’ll see how he does through the night.
Till next time,
Renee
Saturday, February 14, 2009 5:34 PM CST
Hi everyone!
Nettie just called from the airplane at Newark and she’s having a bit of an anxiety attack over the prospect of liftoff. She doesn’t mind flying but HATES take off! She was loaded before everyone else due to the wheelchair so she’s having more time to sit on the plane and think about the take off. I assured her it will all be over in less than an hour and she’ll be landing in California in just 6 short hours. I can’t believe my “little” girl is on her way to California!!!
The rest of the day consisted of Soccer for Cody and Marriela. Cody has more energy than the rest of the team combined. He is happy to just run after the ball for the entire hour without a second thought. He is so polite when he gets to the ball though and often lets the girls get the ball. That changed today when a teammate decided that she was the next Pele and NO ONE was going to get the ball except her. She grabbed Cody’s shirt from behind and held him back from getting the ball and at that moment Cody decided that NO girl was going to stop him. LOL
Marriela did much better in soccer today, actually going after AND kicking the ball in the correct direction. She isn’t quite sure what offense and defense means and often left her post to wander around, but in time that will come. LOL I LOVE coaching the defense and the kids seem to really like having me back there cheering them on and helping the stay focused on the ball.
Joshua spent last night at Casey’s Place, but due to a lack of staffing, he couldn’t spend two nights. So Peter and he are on the way home as I write.
We saw the neurologist in Rochester on Thursday for Sergio and Joshua. First, Joshua. He was very happy to hear that we have been almost seizure free for about 2 weeks. However, with that said, he is not happy that he is on 4 seizure meds, IVIG and has the VNS in order to get to this level of control. We know one or more of his older meds aren’t working, as he wasn’t controlled until we added the Klonopin, but the question is . . . What one? So in a few weeks we are going to start weaning away his Zonegran. Then we will try to wean off another med, with the goal of replacing that one with a different one. But, overall, Dr. Henry was ok with everything staying status quo for a bit longer.
Now Sergio. . . He was very impressed to see how much more Sergio is doing developmentally than what the paperwork made it seem. He also agreed that we can try to wean Sergio off the Keppra and see how he does. However, he also wasn’t prepared to say that he doesn’t have a seizure disorder, as many of the things Sergio presented with, could in fact, be a seizure. So, we now have Diastat on hand in case he has another episode. If the Diastat helps than we are probably looking at a seizure. If it doesn’t then we have to investigate other causes. He also asked to do glucose checks each time we think he is having a seizure. This way we can see what his sugar looks like and how much may be hypoglycemia induced.
Marriela is doing well. We have an appointment with child psychiatry on Friday of this coming week. I am looking forward to this meeting, as we will finally get some guidance in how to adjust her meds and takes a step closer to an actual diagnosis. Peter and I see a lot of autistic like traits and wonder if this may be an underlying issue that is masked by her other issues. I guess we’ll see as the evaluation process finally gets started!
Cody is well and doing fine since adding his reflux meds back on board! I even cancelled his ID appointment to see if he really just needed to have the meds on board to give his body the chance to heal. We’ll see. I can always ask for another referral if necessary.
Tray is also doing very well. His PT/INR was back in the normal range. We will hold steady at 3 mg for his Coumadin for the next two weeks and then recheck him. I suspect he’ll be too low by then and we’ll need to go back up on his dose, but hey, who knows! LOL
Peter and I have reservations at a nice Italian restaurant tonight and look forward to our nice Valentines dinner. We’ve been together for 18 years and married for 15 this year. 15 years!! How is that possible?
I have a story to tell about our trip to Rochester when I have a few moments, but right now I have to go get dressed for dinner!
Take Care and God Bless,
Renee
Monday, February 9, 2009 7:08 PM CST
Hi everyone,
Hope this finds you all well. We’re hanging in there.
Tonight I found myself getting a bit irritable, but I’m fairly confident it’s from Sergio’s ban on sleep and the game of “scooter football” that was happening (a rule-less game using scooters to go around the living and dining rooms - they’re connected by two sets of French doors - trying to scoop up a flat football off the floor and throw it at random objects and yell “touchdown” for no apparent reason). Cody was deeply offended every time someone other than himself determined it was their turn to yell “touchdown” and proceeded to try to run over their feet and yell “I’m the winner, not you.” I never said I was raising good sports . . . Lol. As this was all going on, Sergio felt it was the appropriate time to toss the three different metal dog dishes into the air continuously on the hard wood floor and squeal in delight with every crash he heard. I was never so happy to have finally have fed them dinner and sequestered them to their bedrooms!
As for how they’re all doing. . .
Sergio is finally looking like he’s gaining back some of his weight. His cheeks are fuller and he’s doing wonderful from a GI stance. He has a bad cold, but even that, he seems to be fairing better. Today, he even went so far as to take a 2 hour nap! EGADS I was beside myself with joy at the sight of seeing my child sleep. Of course, he went down at the same time as the rest were arriving home from school so there was no nap for me. But, he needed the sleep and hopefully we’re getting back to the need for sleep. We pray.
Joshua is doing soooo much better in school now. He is attending and participating in Technology easily. He is making a “dog house” hammer, whatever that is. He has had an amazing run of seizure free days in the past week so we’re enjoying this tremendously! Wednesday he goes to 5C for his port access, then to the endocrinologist to discuss his bone density issues, then home for IVIG. On Thursday he’s going to Rochester with Sergio and we’re seeing the neurologist for his regular follow-up visit.
Tray is doing great. He went to cardiology today and Dr. Atallah shared with me that the echo done in the hospital the week before last, had shown improved heart function (still poor, but at the better end of poor) as well as decreased leakage of his valve (still severe but at the milder end of the severe range). YEAH! We’re just going to keep doing all we’re doing and ride out the rest of the school year. I asked, and he agreed, that we will only go for the port-a-cath IF Tray has 2 or more breakthrough arrythmia episodes. Then, it’s much better that we become proactive and have access if we’re facing repeated atrial flutters. So for now, we’re loving the line-free days! The only issue that cropped up, was his PT/INR (the coumadin levels) were very high for Tray. He was 5.5 and we want him between 1.8 and 2.3. So tonight I held his dose and we then do 3mg for one night and recheck him on Wednesday. Other than that, all is well with my big guy.
Cody is fully recovered from his ear infection and taking his reflux meds like a champ. The only problem is, he’s taking the reflux meds that the insurance no longer covers and despises the one that they do cover. UGH. But, we’re going to go ahead and use up the old med and deal with the change over when we have to.
Marriela is still Marriela. LOL She is still high strung and talks a mile a minute, but she’s doing ok and we’re thinking we have a handle on her new medication schedule. She did great is soccer and I LOVED coaching her team. I’m in charge of the “defense” and the head coach handles the “rules and the offense”. Works great for me, except I lost my voice only half way through the game LOL.
Nettie is ready for California and the final arrangements and details have been worked out. She is one of 18 people going (10 adults and 8 teens - 7 of them girls). She is all packed and only needs a few last minute things to be ready. I’m not nervous for some reason, but Peter. . . He’s having a hard time with her leaving. She and he will be fine, I’m confident.
Till next time!
Renee
Wednesday, February 4, 2009 7:58 PM CST
Hi everyone,
How’s it going for all of you out there? Tonight was one of those nights I could have really done without. . .
Sergio is actually doing well from a GI point. He went to the Pulmonologist yesterday and he surprised him very much by having sats of 98 percent on room air!!! I had tried to tell the doctor at our previous visits, that he was doing very well during the day and rarely needed O2 in the day anymore. So, now we have a lot more freedom on when and where we use the O2 as long as we monitor his sats closely. When he’s off, we just have to check him every 30 - 60 minutes and leave him on the monitor during all naps. But, at night he is still to stay on the O2 at .3L until we monitor him with an apnea monitor. And he'll stay on the HR and sat monitor for some time to come even if he does come off of the oxygen, since he's proven he needs it during any kind of crisis at all. All good stuff. Except his weight. He is down to 9.6 kilo. He was 10.4 just 4 days ago. It is suspected that his body is burning the calories at an abnormally rapid rate since it was so sick and so malnourished for so long, this is called a “catabolic state”. It is hoped that as he receives the continuous feeds, his body will slow down and start burning the calories at a more normal rate and thus allow him to actually gain weight rather than lose. If he loses ANY more, I’m going to put my foot down and find a formula that will help him better than Pediasure.
The only other issue we have with Sergio right now is his lack of SLEEPING!! Oh dear God, the child has taken a stance against the idea of more than 2 -3 hours of continuous sleep. I have night nursing, but you can still hear him screaming and yelling all night in all areas of the house. I come down and comfort him only to have him start screaming as soon as I leave. I don’t come down and he’ll scream till the sun comes up. Add to that the lack of naps anymore and we have a very, very, very, very, very, very, cranky child on our hands. I thought I was going to have to go for a very long drive tonight. . . And he wasn’t the only one screaming! LOL
Cody has another ear infection. He was at the pediatrician on Monday, but they said the ears weren’t infected, no treatment needed. I got home at 3:30pm and at 4:00pm he had a 101.8 fever. That night he was burning up. The next day he had a pulmonary appointment as well and the Dr. felt that his ears were both very infected. He started Zithromax yesterday and though he was burning up all night, he was cool as a cucumber and has felt great all day. The doctor also felt very strongly that the ears, nose and lungs are all still a problem of reflux. So we are to go back on his reflux meds and see how we’re doing in 3 more months.
Joshua had a GREAT day in school today! Apparently he’s been having a lot of behavioral issues of late. Most notably, he HATES technology class. I am baffled by this, as he loves to build things and loves the Home Depot classes they have for kids. But, he has made technology the bane of his existence and it’s taking 3 people to escort him there and get him to even just sit in class let alone participate. Well, after holding the Wii hostage over his head (figuratively of course - though I think it would have been far more emphatic if we HAD held it over his head LOL) and a nice talk about summer school options, Joshua has decided technology is not as bad as he had anticipated. “wink” Doing great seizure wise thus far as well.
Tray felt sick tonight and complained of upper back pain. I gave him some Tylenol which seemed to help a bit. But during his dinner he looked up and said he didn’t feel well and then lost his dinner. He went to bed way to easy and fell asleep almost instantly. His sats and heart rate were both very good, so I’m confident it’s just a bug. But we’ll watch him closely tonight.
**** news flash ***** Sergio is sleeping!!!!!!!! Can you say Alleluhia (or something like that)! Oh, now if only he’ll stay asleep!
Nettie is soooo excited about her trip. Her hair is almost done and this weekend we’re getting all of her things she needs (shampoos, batteries, clothes etc). I’m going to do her IVIG the Friday before she leaves and then we’ll need to do it as soon as she gets back on the following Sunday. But other than that, there is nothing that’s stopping her at all.
Marriela had a rough night. She was also a screamer, for no apparent reason, she melted down. We’re trying her medication in different dosing schedules to see what one works best for her. I think this new one might work if I can hold it together long enough to really assess it. LOL Coming off the bus is a very hard time for Marriela and she tends to be one long laundry list of complaints. . . Her feet grew to much, her shoes are too small, her sneakers are too big, her feet are too small, she hates her shoes, her hair is to short, her hair is to long, she hates having her hair washed, her friends don’t like her, too many friends like her, she needs a new lunch box, she hates eating lunch, she needs a new back pack, she hates having to have a back pack, she needs a pink watch, she lost her pink watch, she finds her pink watch but it’s broken, she needs another pink watch, she hates pink watches. . . You get the picture. LOL. Hopefully, giving her the medication upon arrival off the bus, as well as in the morning and at bedtime, will get enough into her system to help curtail some of this angst and frustration she deals with all the time. (and thus reducing the angst and frustration of having to listen to her all the time).
I think that’s all of them.
I don’t know if I mentioned, I am now assisting both Cody’s and Marriela’s soccer coaches. I even have an official soccer jersey for Marriela’s team LOL. I have no idea what I’m doing (never played soccer in my life) but do know that you need to teach them to run “to” the ball (something Cody’s coach forgot to teach them) and that you don’t use your hands (another important feature she forgot to mention to them) LOL. I spend most of my time physically guiding Marriela and another little boy, with aspergers on the team, to the ball and cheering on the other players as they learn their new positions. It’s a lot of fun and good exercise I suppose. LOL
Well, since everyone is sleeping, I’m going to go and do the same! YEAH!!
Till next time.
Love,
Renee and the gang.
Sunday, February 1, 2009 5:43 AM CST
Hi everyone,
I had a beautiful update all done two days ago and then I let one of the kids play on the computer and POOF, gone was the update that I did. I should know better than to ever do ANYTHING without saving it.
Anyways, Sergio has had some answers. He does, in fact, have severe dumping syndrome. In addition, he has gastro-paresis which is why his stomach wasn't moving on the Barium swallow. This was probably all caused by either a virus or infection or the antibiotics used to treat an infection. So for now, he is on the feeding pump 24 hours a day so he only gets a tiny amount of food in his stomach at a time. He is to do 3 cans of Pediasure a day at 30cc/hr for one week and then 4 cans at 40cc/hr for another week. If, like he is now, symptom free at the 2 week mark, then we can go down to 22 hours a day, then 20, then 18 etc. until we are to 12 hour pump feeds. At this time, it is the plan to leave him on the 12 hour feeds at night until further notice and we'll do all of his nutritional needs via the pump during the night. Any extra we get in during the day will be a bonus. I am thinking that this may be the perfect time to begin to push the eating by mouth. He has a full fledge swallowing evaluation this month so we may have some new tactics to approach this with.
So far, the new method, though very inconvient for poor Sergio, (beacause he has to drag a pump and bag of food all over the place and he's constantly tangled up in the tubings, his O2, his sat monitor, etc.) is working beautiful. He has had no elevated heart rates, no diarrhea, no vomiting, retching, etc. at all!
We will still follow through with neurology, but I strongly feel that the seizures were related to severely low blood glucose levels.
I think today is the final day of a bad upper respiratory crud that Sergio has had, as he is barely coughing and his nose is much less stuffy. He is still very cranky, but we brought Marriela's old baby swing from Peter's sister's house and he LOVES it! He's killing me on batteries, but the swing is a God Send! This is the third child that we've used it with and each has loved as much as the other.
Cody had a fun time at playgroup the other day. We went and ran around and got some errands done while Sergio took a nap in the car. We got him a chocolate milk to go with his peanut butter sandwich. Shortly after arriving home, he looked off and said he had a belly ache. YEP, you guessed it, the chocolate milk revisited us again, and again, and again. And then. . . he was fine. He literally vomitted, slept and was cured. Awoke wanting to eat and drink and doesn't even seem to remember he was sick at all. Oh how I wish I could be like that!
The rest of the gang is well. No sniffles, coughs or tummy aches amoungst the remainder of the crew. Odd, I know. I'm sure there are some yuckies lurking somewhere around inside one of them though. LOL
Nettie got her IVIG last night and I have started braiding her hair again. I have to go get some more hair to finish it today after church. It's soooo tiring to do the braiding, as you have to stand for the whole thing and I was doing it for over 6 hours yesterday and we probably have as long to do today. But, when it's all over, it looks soooo good. We're doing a bob this time. Just to her shoulders. Something different.
Well, that's it for now. Till next update.
Take Care and God Bless,
Renee and the gang
Tuesday, January 27, 2009 6:08 PM CST
Hi everyone!
Things continue to happen here, some good, some not so good.
1. Bad news. . . Sergio is continuing to keep us our toes. Today he had 8 big diarrhea’s. I am getting more and more worried about him. He has NO weight to lose and now he isn’t tolerating any feeds. I started calling all the doctors I could after lunch.
I guess I should back up a bit first. Yesterday Sergio had a scheduled appointment to see the Nurse Practitioner in the surgery department for a change in G-tube size. He’s lost so much weight, that his g-tube was now to long. I explained some of our issues we’ve been having and she sent us across the street for a STAT barium study to be sure the wrap he has around his esophagus (to prevent reflux) hadn’t come undone. Good news, it hadn’t and there was NO reflux. They did note that he has very delayed gastric emptying from his stomach, but once it got to the intestines it shot through like a rocket. No one really knows what this means.
Back to today. Surgery called back and shared the same results that I just told you and said they should start him on some Reglan, a medicine to help his stomach to empty faster. Well, it’s having no problem emptying today at a very rapid pace, so I declined it at this time. They will mail me the script and when we are more stable we can think about starting it.
I also talked to the pediatrician, the endocrinologist and the GI doctor. I expressed my concerns that this has been going on now for over 2 months and his weight is not only not increasing, but has actually decreased since seeing GI (where they told me to NOT let him lose any more weight). The endo had me come up and pick up a glucometer to check his glucose levels whenever he is symptomatic and post feedings. He also had us put Sergio on his stress dose of steroids until further notice. We were also given a script for a Dexamethasone shot to use in the case of severe illness and he needs to be seen in the ER. GI is going to see us emergently tomorrow at 12:30 (in the middle of a snow storm ugh). They’ll order lab work and depending on what he weighs tomorrow at he clinic, he may be admitted to receive IV nutrition while we figure out why the heck he hasn’t been able to tolerate his feedings lately. Then on Friday we have an appointment with cardiology to get a holter monitor for 24 hours to catch the rapid heart rates. I think that covers most of his body parts and I am praying that by the end of the week and all of the data is in, then we’ll have a better understanding of what’s happening to my baby.
2. Bad/Good news. . . Due to the unexpected barium study I didn’t make it home in time to take Joshua to get his port accessed yesterday. So I just got back from 5C where the access went beautiful. He is currently hooked up to his IVIG and playing Wii. He’s been giving the staff at school a hard time lately about EVERYTHING. Welcome to puberty. UGH.
3. Good news. . . Tray continues to feel great and I am enjoying my central line care free days!
4. Good news. . . I was able to talk the MD direct people into letting me switch Sergio’s ID appointment over to Cody. So now Cody will see Pulmonary on the 9th and ID on the 11th and ENT on the 16th (I think).
5. Bad news. . . I had to withdraw Cody from preschool. It was such a hard and painful decision to make, but he’s been sick to often and missed so much that it was neither feasible or appropriate to expose him to the germs over and over. So until we know better about why he’s sick so often and why he has such abnormalities on his immunology workup, he will be out of the area of kids.
6. Good news. . . Nettie is feeling great!
7. Bad/Good news. . . Marriela is healthy. But, her medication increase does not seem to be helping. She is still very easily agitated and upset. Bedtime continues to be a challenge (one that I HATE since I have always had a very strict bedtime philosophy in this house!) as she does not feel that she needs to go to bed. But, we meet with the awesome psychologist on Thursday morning, that we had for the parenting classes of disabled toddlers. She is so good and I pray she can offer some case specific input to help curtail Marriela’s agitation.
Well, other than I don’t feel well at all right now, I think that’s it.
Oh yeah, we almost had a major house fire. The little space heater we use in Sergio’s room (the baseboard heaters don’t work well) apparently began to smoke severely and heated up until the entire thing was red and hot to touch. This was right next to spare tanks of O2 as well as in a room where an O2 concentrator was running. Sergio was in his crib. I am so thankful that our wonderful nurse just happen to wander in and found the situation before a flame started or the entire place could have technically blown up with all the O2 we have in the house (don’t forget we have 2 kids who are on it and have many, many tanks in the house, plus to concentrators). So I guess that was a bad news. . .
But, all is well that ends well. I am waiting to finish the IVIG infusion and then off to bed.
God Bless,
Renee and the gang
Saturday, January 24, 2009 8:11 PM CST
Today was the first day of SOCCER for Cody and Marriela. Marriela was beyond excited and is anxiously awaiting the purchase of her new “pink” shin guards. Cody was very attentive and energetic and is really going to take to the sport easily. There are 8 girls and 3 boys on Cody‘s team. Marriela was more reserved in her approach but finally loosened up a bit and finally got into the swing of it. She has more boys than girls. Go figure. LOL Actually, I never got to see Marriela because I had to go, yet again, to the doctors. This time with Cody as he is covered in a nice rash from head to toe. I wasn’t sure if it was an allergic reaction or not to the antibiotic he was on for is ear infection, but after withholding it for 2 days it has improved a lot already. The doctor thought maybe it was a viral rash and should get worse before it got better, but since that’s not what happened, I think we’ll have to use caution with the type of antibiotic he was on.
Sergio had another “episode” today for lack of a better word. He had just been fed and I heard him cry. There was something about the cry that said “something is wrong Mommy!”. I went to see him and he was very irritable again. I asked the nurse to hook him to the monitor and sure, enough his heart rate was sky high and he literally fell asleep in my arms within 5 minutes of picking him up. This is VERY unusual and not normal at all for Sergio. His heart rate stayed very high for another 2 hours, even when sleeping. I started doing A LOT of research today and I think I have the diagnosis. He has severe dumping syndrome. It’s almost exclusively found in children who have had a Nissan fundoplication surgery to prevent acid reflux. I believe that his glucose levels are falling so low that he is having small seizures. BUT, the high heart rate and sleeping and such are related to the early part of the syndrome and NOT to seizures. So yes, he is having seizures, but I think they are caused by this other syndrome. I have to call GI first thing on Monday to see if they can do a test called a “glucose challenge” to see if his heart rate elevates after taking in pure glucose after a 10 hour fasting. The treatment will probably involved changing formulas to one with more complex carbohydrates and less fat. This diagnosis will explain the vomiting, the listlessness, the irritability, the need to go to sleep, the high heart rate, the diarrhea, etc. I feel happy I think we’ve got an answer with a simple solution and an easy test to prove it.
The rest are doing well.
Joshua did have a full blown drop seizure last night in the bathroom while waiting for us to start the shower for him. I’m just so glad he had it out of the shower and not in the shower. I’ll be very happy once the new bathroom is built for his sit down tub! He has IVIG on Monday. We’re going to 5C for accessing, but we have another home nurse who is meeting us there to see how it’s done. She works at Casey’s Place all the time and Joshua knows her very well. In addition, she is currently using and accessing ports at her other job so she has lots of experience with ports! YEAH! So we’ll see how it goes.
Nettie got her IVIG today and I did her hair. She leaves in just 3 weeks for California!! Amazing!
Tray is up and feeling absolutely fine!
Marriela’s med was increased from 2.5cc to 3.0 cc in the morning only. We’ll try leaving her at the 2.5cc at night for now and see how she does.
Peter is at a movie with his brother-in-law, Larry. I suggested he take Larry (rather than I) to go see that new vampire/werewolf movie. . . Not my cup of tea. LOL
Till next time!
Renee
Friday, January 23, 2009 8:09 AM CST
Hi everyone,
We're home!! Actually, I just sent Trayvon off to school. He was still vomiting after everything he ate upon discharge, but I suspect that it was related to him not pooing since Saturday. I can't imagine not going for over 6 days! UGH. We gave him two doses of colace before departing and as soon as we got home, he went to "his" bathroom and took care of business, came downstairs and happily ate Dinosaur BBQ with no vomiting at all. In fact, he awoke this morning, went some more and ate 3 spare ribs and some cornbread for breakfast and looks and feels great.
The cardiologist and attending physicians have all emphasized to me that I need to watch him closely for the next 7 - 10 days for any fever at all. Even if everyone else in the house has a fever, he has to go to the doctors for bloodwork and probably IV antibiotics due to the nasty nature of this bug he had. They are worried it could take up residence in his heart, since that is where the tip of the catheter was located and probably the location of the clot that had the infection in it as well. I have great confidence that this is behind us, but Tray LOVES to suprise us, so I don't rest to easily anymore. LOL
The rest are doing well! Joshua actually had a note sent home yesterday that he has had NO seizures in school this entire week (see what happens when mom leaves. . . hmmmm.). He has had some at night around bed time, both Peter and I have seen them this week, but I love that he's not having them at school, it makes learning so much easier when your brain isn't turning on and off all day long.
Cody continues to have significant nasal symptoms despite allergy medications, oral steroids and antibiotics. Getting frustarted now. He sees the pulmonologist in a week and a half, so I'll take up the abnormal lab work with him at that time, since he told me all was normal.
Sergio gave his nurse a hard time yesterday with some more seizure activity. I am filling out the paperwork today to get him his appointment in Rochester ASAP. Thankfully, he hasn't pulled the no breathing routine again, but he loves to run VERY high heart rates, gets very lethargic and as limp as a wet noodel and becomes very irritable. It lasted about 2 hours and then he was back to normal again. I really want a suppository medication to give him to stop this prolonged activity. It can't be good for his little heart to beat that fast for that long.
Marriela was missing me a great deal so she ended up in the nurses office yesterday with a belly ache. Nothing a little TLC from our favorite school nurse in the whole world, a little book reading and magic crackers couldn't take care of. The nurse then called to tell me she was sending an entire Dinosaur BBQ dinner by our house about 5:30 for the family. What an awesome person Becky Launt is and we are immensely lucky to know and have her services for our kids. Thank you BECKY!!
Nettie is great and very, very happy I'm home now. LOL
Well, that's it for now.
Renee
Monday, January 19, 2009 9:48 AM CST
Wednesday, January 21, 3:49pm
Trayvon is doing great now. He had some difficulty getting the IV, it took 3 sticks with 3 different IV team members, but he got one. So far, it's lasted very well and we pray it will hold out until tomorrow evening when we will finally get to go home!! He had a bubble bath today, and Daddy's coming down in an hour to stay with him for a bit. He's in a great mood and we were just in a mean game of UNO Attack. We've had a lovely roommate which Tray has been unbelievably kind too. Our roommate is severely disabled. Unable to speak or move without his wheelchair but has an unbelievable laugh that just knocks any bad mood right out of you. Tray has been making him laugh all day and all last night. He's such a good boy.
I'm going home while daddy's here visiting to make dinner, do hair, give baths and see my babies.
Till we get home tomorrow (unless something unreal happens and we don't go home! UGH) I'll update from home.
With love,
Renee
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Update (Tuesday 1/20 1:19pm)
The irony of it all. . . the line is out. . . not by going to the OR. As the attending on the floor stood and talked to me about how the attending surgeon had finally conceded that the line should come out ASAP, Trayvon rolled over and pulled the darn thing out all by himself. He kneeled on his lines and ripped it right out. It was virtually painless and he bled for about 1 minute and it was all over. What I've been asking them to do for over 30 hours now, Tray did in 30 seconds. Now that's irony.
Now, we go and try, try, try to find a place to put an IV. This challenge may trump our others thus far. But, I'm staying positive and they've agreed to give a bit of ativan to ease his anxieties as well as about a case of EMLA cream to ease the process.
Wish us luck!
Our 48 hour departure time starts with the next dose of antibiotics via the peripheral IV and they're due at 2p and 3p. YEAH!!
Go Trayvon Go!
Renee
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Update (Tuesday 11:40 am)
We are still here and embroiled in some sort of political dispute. As I had said, the line needs to be removed ASAP due to the type of bacteria that is growing in it. It's a 10 minute process in the OR. But, apparently Dr. Martin Luther King Day precluded them from having to work yesterday, as they told the doctors on the floor there was only a skeleton crew due to the "holiday". Now, don't get me wrong, my children are black, I see Dr. Martin Luther King Day as a wonderful holiday to commemorat a great man. But when someone in a hospital is sick you can't claim "holiday" on MLK day just so you don't have to do something you don't want to be bothered with. So he was NPO (nothing to eat or drink) from 11:30 am to 7:00pm yesterday when they finally said they weren't coming for him. Today he's been NPO since midnight and is about to miss lunch AGAIN, and no surgery in site. I can't tell you how mad I am, as well as the ID team, the attending physicians, the residents and the nurses that this has all come to pass in the way it has. The surgery people are to weak to even come by the room themselves to check on him (like they had the previous two days, hmmmm) because they know they will have to listen to my wrath. There will be complaints filed upon discharge, trust me.
Tray on the other hand is handling it all very well. He had a sponge bath, we scrubbed his room trying to keep him healthy while he's here, and now he's playing with the Child Life specialist.
Please pray that this line is removed soon so we can begin his 48 hours of IV antibiotics and we can finally go home. Right now, as it stands, we won't be home until Thursday evening. It should have been Wednesday morning. The longer they wait, the longer we're stuck here and the harder it is to manage the other children's care at home. Peter is doing a great job as is our wonderful nurse. But, I need to be there.
Updates to come as we move along.
Take Care and God Bless,
Renee
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UPDATE:
Trayvon will be going to the OR in a bit to have his line removed. Then he will stay here for at least another 48 hours to recieve IV antibiotics. Apparently the bug that grew out is a nasty, deadly kindda bug and it sticks to things like super glue. So the line will never be clear of this infection and they won't put in a port where there is a chance that it could become infected with the same bug. Thus the 2 days of antibiotics AFTER it comes out. So right now we're here until at least Wednesday evening. UGH.
He doesn't know yet, but he ate about an hour ago so he can't go down to the OR until at least 4 hours post eating. We're very frustrated. It's so good that he feels well, but it's so hard that he's here and doing all this when he feels well. Know what I mean?
I'll update after surgery.
Ta Ta for now!
Renee
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Hi to all from University Hospital. The fun just never ends here! LOL
Trayvon had some trouble with his line on Friday (or should I say "I" had some trouble with Trayvon's line on Friday). It had come unclamped at some point and a small clot had formed at the end of the line that extends out of his chest. I played around and was able to get it working again and it flushed beautifully, however, it would no longer draw back. I sent him off to school and started making some phone calls to see how and who we see about getting some TPA (clot dissolving med) for his line. Cody had an ENT appointment and not a day to late as he woke up with severe ear pain. I'll give you his update below LOL. I had just walked in the door and a phone call from the school told me that Tray was in the nurses office sick with a fever. I half anticipated the call since we had to monkey around with the line that morning. He looked bad when I picked him up. I put him on the couch and had called Peter to come and relieve Sergio's nurse and watch the little ones while I took Tray to the ER. I finally got him to the ER at 2:00p Friday where he was feeling fine, fever free and was full of it! He looked and felt great, but it was better to draw the cultures and get the TPA needed to get the line working again. Welllllllll, 11 hours later, 3 blood tests and 1 IV line, a dose of antibiotics and alot of convinicing on my part that we were better off at home, we were finally on our way. I had been told that the pediatricain's office was ok with giving him his next dose of antibiotics and that they would give me his Sunday dose to give at home. Well, apparently this was incorrect, and the peds office declined to do any medications at all at the office. SOOOOOO, back to the ER at 6:00am on Sunday for his next dose. We were all set to leave and were told that the cultures were all negative thus far so he was only going to need one more dose of his antibiotic (which I was going to have to come back on Monday morning to the ER for since it's a Holiday) and he was set. That was until four minutes before we were to leave and the lab called and said his line culture had grown out gram negative rods (not good and on the wrong antibiotics). So we are now inhabiting room 16 at good old University Hospital until we figure out which bug it really is and if the antibiotics he's on now are the right ones. Once we know that, then we can go home and I'll finish giving them for the next 2 weeks at home. We've also made a plan to switch out his external line for a port-a-cath now (a completely internal line). This will reduce the fears of clots and the need for daily care and such.
Tray has actually felt great other than that 2 hour fever he had as well a bad migraine he woke up with this morning. He vomited quite a bit and finally fell asleep with some zofran and motrin on board. He woke up migraine free!
The rest are doing well. Joshua's Klonopin is doing it's job and his seizures have steadily decreased since starting it.
Cody did in fact have an ear infection and he's now on antibiotics. We return to ENT in 6 weeks to see if it cleared and then decide if tubes are needed yet again. If they are, he is going to remove his adnoids as well since he's getting too old for repeat ear infections and he had a hole in his ear drum already so we don't want the cycle to begin all over again. We also reviewed his immunology lab work and discovered some concerns. He has lost his response to tetnus and pertussis. He is only 3 and has had ALL of his immunizations, so he should certainly have high protective antibiodies to those two illnesses. In addition, it seems there has been a big decrease in many of his pneumococal antibodies, thus the reason he has so many pneumonias as well as ear infections. I am NOT looking forward to the potential for a referal to the ID team as they and I did NOT see eye to eye on Joshua and this is virtually an identical set of labs as his big brother. Sigh.
Sergio has been doing well! He had one bad day again last Monday where his heart rate began racing again and his behavior was radically different than it had been just a few moments earlier, so we're fairly confident he had more seizure activity. But since then, he's been great.
Marriela is doing well health wise but I still need to address her medication dosage with the neuro-dev. ped to see if she can have an increase. Been a bit busy though so that will come in time.
Nettie is great. I went home last night for a few hours to give her IVIG. She likes when I can start and stay for the end rather than have dad have to help her remove her needles and such. So that was nice.
Well, that's it. I've missed many fun events recently and it's really frustrating me. My kids will ALWAYS come first, but sometimes, you just want a break. I have lately been walking around my home and realize just how surreal it can be sometimes to strangers that walk in. Sergio is on his oxygen, Joshua's IV pump lives in the dining room, the top of the refridgerator is covered with meds and G-tube supplies, I have medical supplies everywhere, have to follow Joshua around to be sure he doesn't fall down somewhere dangerous, etc. etc. With that said, I wouldn't have changed a thing about my life, just venting from the very, very hot playroom at the hosptial! UGH. LOL
I'll update more, as I know more.
Take Care and God Bless,
Renee
Wednesday, January 14, 2009 4:16 PM CST
Arrive at the hospital at 10:00am, into surgery at 11:15 (already asleep I might add with the help of his new Keppra medication), out of surgery at 12:00pm, out the door at 1:30, pick up Cody and walk through the door of our home at 2:00P. What a great day!!! Sergio is now the proud new owner of another set of ear tubes. Here's praying that they last longer than 3 months this time.
Despite all the worry of Sergio not being able to have surgery, he flew threw it with no issues at all and is home and doing fantastic without even being on oxygen. Very cool.
We also heard from Joshua's neurologist and he is happy to see Sergio as well. The paper work is being mailed out tomorrow and we'll see him in a few weeks to go over everything. I'll probably make an appointment for Joshua too, since we're going, plus, Joshua is starting a new med tonight.
Joshua had 10 seizures yesterday, an anticipated increase due to the stopping of his Lupron injections. But, we can't let him seize this much. So we're going to try the medication Klonopin to see if it helps while we wait for his hormone levels to even out and the seizure activity begins to decrease and stablize again.
The rest of the gang is well. Cody is back to needing nebs and starts oral steroids tonight due to continued wheezing, but overall, he's doing well.
The bathroom check was picked up by the contractor and he should be starting within a week or so! Soon, we'll have a wonderful, walk-in, sit down bathtup/shower for Joshua to use. This will reduce the stress of shower time for us and Joshua tremendously. Just have to figure out where the heck we're going to put Sergio, since part of his room is being knocked out to add to the bathroom. We're thinking the dining room, but there is nothing quiet about the dining room in the morning so he better get used to being up at 6am with the rest of us! LOL
Well, that's it for now!
Take Care and God Bless,
Renee and the gang
Monday, January 12, 2009 3:37 PM CST
Sergio continues to keep us on our toes. Today was a virtual repeat of last Wednesday when I had him admitted to the hospital. He has diarrhea again (6 big diaper fulls so far), he was lethargic, very irritable and his heart rate was between 160-180 for over 4 hours. We were instructed to give him an extra dose of his seizure med and wait it out a bit longer. Before the med would have had time to help, he started to come around and he improved almost before our eyes in about 10 minutes. He has been great the rest of the day except for the diarrhea and his heart rate is still higher than normal for him (130 - 150). But, he's playing and acting like normal old Sergio again for now. He is still scheduled for his ear tube replacement surgery on Wednesday. We see the pediatrician tomorrow to see if she feels he's still ok to go through with the surgery. I've waited to call the anesthesia consult that keeps calling because I don't want to report all of his symptoms, have them tell me that he can't have the surgery, only to have the pediatrician say he can and that it's better for him to have it with the illness, then to not have it. I don't know what these "episodes" are but they worry me and his little heart and lungs can't handle to much stress.
Joshua was suppose to go today to 5C for a port access, but when he got home, he was very, very emotional, and flat out refused to leave the house. I made a deal with him that we would have to go tomorrow if they said and have to go when they said. Thank God that they agreed to do it tomorrow, but we have to be there first thing in the morning. Luckily, Missy is on and she is scheduled for the access (she got it last time as he was thrashing all over, so I'm sure she'll do great again). He needs a couple of successful, uneventful accesses to regain his confidence in the process again. Til then we'll have to work with him and probably offer him phyiscal support/restraint until we're ok again. I have the med ready to run though as soon as we get home from the pediatricain's office. Please pray that we don't have to be admitted for Sergio so that Joshua can get his med!
Cody has a bad cough but has done well with just some occasional nebulizers.
Nettie had her IVIG without any incident last night and we've finally got the pump running at a decent rate again. Stupid thing was taking over 4 hours to infuse before and I bumped it up so now we're down to about 3. Much better. Also had Nettie's CSE meeting today and learned that she is doing GREAT! All good news and no changes in her services.
Marriela's med is not working as well anymore. She's far more agitated and "obsessed" with various items/concepts. I'm calling in the am to report this and hope they let me up her med again. They said we had lots of room to move up so here's praying that they were right!
Tray is doing great. We contiue to experiment with different dressing techniques to try and find one that causes little distress putting it on as well as taking it off. The duoderm works great but the tegaderm sticks to hard to it and I can't peel the clear dressing back without breaking a sweat! I am definately going to advocate for a port to be placed before summer so he can swim but we'll still have a secure access in case we need it.
We did get a fantastic suprise in the mail today! The first installment for Joshua's bathroom modifications has been issued! I called the carpenter to let him know that he can start the work any time, just let us know when so we can move Sergio out and. . . somewhere, since we have no idea where he's going to go! LOL
We'll that's it for now. I'll update with more Sergio info as we figure things out.
Take Care and God Bless,
Renee
Thursday, January 8, 2009 9:39 AM CST
We're home already. Sergio had his MRI which (according to a very brief meeting with the neurologist) only showed underdeveloped optic nerves. We knew that, that's why he's legally blind. The EEG went far better than I had anticipated with the help of a laptop computer and the song "somewhere over the rainbow" by IZ. Sergio LOVES this rendition of this song and layed there for over 10 minutes calmly listening to his song while they did the EEG. Based upon my description, he had a complex partial seizure. Actually, he had several, but the longest one lasted almost 3 minutes. He is now on Keppra. This is a drug that Joshua is also on. If all goes well, this is the only drug he'll need and he'll have great control of his seizures with no further issues. I will be making appointments with our neurologist out at Strong Memorial next week for follow-up since I am not a fan of the doc that cared for him at the hospital. But, the med is an appropriate choice for the seizure type so I was fine with bringing Sergio home to monitor him here. Unfortunately we got home so late that I don't have a night nurse for tonight. We do have one coming in at 6:00am so that will help. I pray that he sleeps through the night because last night he cried from 1:30 - 3:30am. It was a long night. Then he was up at 5:45 and ready for the day. For the sanity of our poor roommate, I took him out in the stoller and walked the hall for an hour until a bit before 7:00 hoping he'd go back in to the crib and fall asleep. No cigar. He didn't fall asleep until 10 minutes before they took him for his MRI where he was going to be put to sleep anyways! Ugh. LOL. But, he should be tired tonight and that's what I'm praying for.
The rest seem to be doing well and Peter did a great job holding down the fort in my absence!
Take Care and God Bless,
Renee and the gang
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Hi everyone,
I come to you from Upstate Hospital with Sergio. Yesterday was not a good day for us, he was very irritable and about 11:00 am he had, what I can describe no better as a seizure. He stopped breathing, his arms were postured and his eyes stared straight ahead for almost 3min. I was not comfortable brining him home without a game plan. I am now sure that this is what happened a few weeks ago when he had those severe drops in his sats and he made no effort to breath.
Today he is scheduled for an MRI under sedation as well as an EEG. We have tried four, unsuccessful, times for an IV and will now wait to see if anesthesia can do it with some gas on board.
I'll keep you posted as I can when he lets me out of his sight for more than a moment. LOL
We're actually doing well, just not happy to be inpatient and want some answers and a game plan by the end of the day so I can go home.
Talk soon!!
Renee
Sunday, January 4, 2009 6:04 AM CST
Hi everyone,
The calm before the storm has abated and we’re back in business again. Sergio is sick with terrible diarrhea and Joshua’s drop seizures are back. Just before Christmas we had gotten the disappointing news that Joshua’s DEXA scan, the test for bone density, had decreased considerably in his hip area. His spine, though already significantly decreased, hadn’t changed that much, but his hips, were much worse. He’s at high risk of a hip fracture at this point in time. The only thing we can think of to improve the situation is to stop his Lupron injections, which stop the onset of puberty, and let nature kick in. By letting puberty start, his testosterone will tell his body to grow which will automatically cause his bone density to increase. So in three months we will repeat the DEXA scan and see if there is any improvement at all. In the mean time, Joshua’s hormones are now no longer suppressed and his seizures are all over the place as a result. It should only last a short time, but it’s hard to be on the “alert” all the time now again. Yesterday Peter had just walked past him and heard a small noise, when he looked over his shoulder, Joshua had gone straight back and was lying precariously on the seat of a dining room chair. A tad further back and his head would have hit the window very hard. Sigh. Hopefully this will all settle down in a few months as his hormones level out and puberty kicks in naturally now.
Sergio was a the doctors this morning due to very high heart rate, low sats and just in general lousy feeling. He has had 6 large diarrhea episodes and has just kind of yelled all day and not felt well. We are now waiting to see what “illness” presents itself so we know what to treat, if there is anything we can treat. Right now, I’m just giving him his stress doses of steroids and he’s requiring O2 continuously at this point. Here’s hoping he stabilizes sooner this time than he did last time, or I’ll be spending time inpatient with him instead.
Cody also woke up with a bad cold. He’s croupy and has a rash around his mouth from licking it so much. But, he’s still playing and eating and drinking so I’m going to just give him some Claritin tonight to dry up his nose a bit and see how he goes.
Nettie saw the pulmonologist last evening. Her previous PFT’s done 3 months ago had been severe decreased from previous PFT’s. So her meds were changed from Pulmicort to Symbicort and she started some Albuterol for her occasional episodes of difficulty breathing. Last nights PFT’s were much better. With that said her “asthma” number was 47 (last one was 27), I asked what was normal and was told 80 - 100. So, as you can see we still have a ways to go to improve these numbers. Tonight she is starting on Claritin as well, to see if she has night allergies that result in her terrible night time coughing and we’re to give a dose of Albuterol before bed to see if that makes any difference either. Other than that, she’s doing well.
Tray and Marriela are still happy and healthy so we’ll just leave it at that.
Till next exciting update . . . Just kidding.
Love,
Renee and the gang
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2009 has started off wonderfully. The kids remain healthy.
Sergio is actually spending most of his day off of oxygen and doing better than I with his numbers! He still wears it for sleeping, though his sats are still 94 ithout it, I feel better knowing they won’t get lower than that with it on. He’s very much an active part of the family now. Hlikes to have the kids in his room playing or he’ll crawl over and pull to stand on my legs to be picked up. He’s even begun to let go for secs at a time when standing! Very cool.
We finished Annette’s Self-determination process sans the final approval of the application before it goes to Albany. There is a state-wide freeze on money right now so it won’t get approved anytime soon, but just knowing we finished it, is a relief. Once the approval does go through, she will be able to higher staff to help her acclimate into the community and at home to learn skills needed to live independently. She is very excited about learning how to do laundry, grocery shop, cook, take lessons at the local community college, etc. She’s also very motivated again to work on losing some weight and being healthy so we’re cheering her on and Peter has been getting her to the gym. Go Nettie!
We’ve noticed some very nice changes in Marriela this school break. She is actually “playing” with toys!! You have no idea how big a deal this is unless you have a child who doesn’t know how to play by themselves with toys. We have noticed for the first time, actual “pretend” play with some of Cody’s power ranger figures as well as spending time on the floor with some cars and a toy boat. None of the items are ones I would have thought she would chose to play with, but hey, who cares! This is a huge milestone for her and Peter and I were so happy to see it happening here and there over break.
Tray is looking and feeling great. The new dressing technique is working wonderful (duoderm under the dressing) and he is itch free. He sees cardiology this month and we’ll be having a full work up with echo and all. He is very, very good at the Wii baseball game and Peter has to put him in his place sometimes because he can be a poor sport (likes to rub it in Joshua’s face that he always wins) LOL.
Cody has developed a permanent chocolate ring around his mouth at this point. I don’t even know where he gets or finds the chocolate, but he gets his face cleaned, leaves me and comes back with the ring again. But ask him to eat a real meal and you might as well as him to eat rat poison. He is NOT an eater. Much prefers to drink his 80 percent water/ 20 percent juice combo all day long.
Joshua is doing well. He’s still having the seizures. Silly of me to even write that, as he has always had the seizures. . . But none-the-less, he’s well and happy and that’s what really matters. He informed me the other day that “His wife is going to drive him everywhere.” I asked where he was going to go and he said “Wherever I tell her.” LOL He said it lovingly and it just goes to show that he realizes he won’t be able to drive, but he thinks he has solved his transportation issues. Bless his wife’s heart! LOL
We took the kids bowling yesterday. Tray and Marriela brought friends with them. It was so cute watching them bowl. Cody is a very intense and patient bowler! We had a great time. Though we had no idea how much it is to bowl now! That use to be a “cheap” day out with the kids. Not anymore!
Today we’ll finally make to Church. We’ve missed several weeks with illnesses, company and one week I was just plan exhausted and needed to rest. But this week we’ll all be there! I miss going!
Well, Happy 2009 and we look forward to many more boring updates.
In my thoughts and prayers,
Renee and the gang
Wednesday, December 31, 2008 8:49 AM CST
For a variety of reasons (namely, I have no computer knowledge at all and couldn’t find the below update once I wrote it . . . The little bar at the bottom of my screen went missing and when I lowered it, I couldn’t find it again. LOL) this update comes to you a few days later than I had anticipated.
With that said, we’ve been staying busy with the beautiful thing called Wii!! We love the Wii. The kids are busy and active without being outside, mom and dad can be competitive without killing one another and I means less Hannah Montana and Scooby Doo I have to endure daily! LOL
We had thought we were all set for Joshua to do his infusion yesterday at home, as our new RN came out as well as the VNA nurse. But, alas, the access went terribly wrong and Joshua shut down and refused to let them try again. So I had to call the clinic this morning and ask them if I could bring him in there to be accessed. They had no problem (I LOVE Dr. Kennedy) with us coming in. So I picked him up early from Casey’s Place and we went for our easy access. Not to be. Poor Jen missed as well. By now, Joshua is not having any more of anyone touching this port and he goes into pure fight mode and we have to call in re-inforcements to hold him down so Missy can try. She has a lot less experiencing accessing Joshua (lots doing ports, just not Joshua) so she had no preconceived ideas where that little bugger was under the skin. Lo and behold, on the first try she nailed it. Apparently some of his stitches that hold it in place have come undone and the port has “dropped” again so it’s lower (by quite a bit) now than it was 2 weeks ago. This will be an ongoing issue, so we’re going to just start going to 5C to be accessed and then I’ll do the infusion here at home. . . No nurse needed. We finished his IVIG tonight with no issues.
Sergio went for a low vision assessment today and he totally blew away the dr. with his vision abilities despite being “legally blind”. He is farsighted and will have new glasses in about a week! We also got the lenses as “transitions” so they will turn into sun glasses outside. He looked sooooo cute in his little brown wired frames. He also saw GI who was very pleased with what he saw. He did say that Sergio has no additional weight to lose, but that his current weight is perfect minus any further loss. I do need to call the surgeon now to order a new size g-tube since his is much too long now with his lean, mean tummy.
The rest of the kids are well. I have come up with a new system for Tray’s central line and I think it’s working. In addition, the line is starting to “harden” into place with some scar tissue, so it’s barely moving anymore. We’re going to put some duoderm around the site now to attach the dressings, to so see if we can reduce the irritation all around the tegaderm/covaderm. He’s all torn up were he keeps scratching because he says the tapes itch him. This is what we did for Joshua when he had his Broviac so we’ll see if it works for Tray as well.
Well, that’s it for now! Wishing everyone a happy and healthy new year!
Love,
Renee and the Gang
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Well, it’s now two days past Christmas and I’ve “found” the time to extract myself from the new Wii long enough to give you an update on our crew.
Christmas was awesome. Everyone was healthy. Everyone was happy. Everyone was here. What more could you ask for. Oh yeah, some sort of sanity but that’s a whole other story! LOL
Nettie was beyond thrilled with her new laptop computer (Santa found a decent deal on a used/older model) with wireless internet capability. The operative word here is “capability”. It is capable of being on the internet wirelessly, but apparently with parents like Peter and I, we are not “capable” of activating this lovely feature. . . So we await our trusty computer repair man to arrive with the computer I “dropped” and he has fixed. Hopefully, he will get her up and running in the cyber world by the end of today.
Cody was a big fan of an Imagintex (or something like that) cave like thing with a gorilla who has eyes that light up and little animals and even its own “Indiana Jones” dude. He was absolutely THRILLED with the process of opening gifts. Tore open the wrapping like a mad man and cheered loudly for whatever was in the package (even clothes!). But, then rapidly turned around and yelled, “Where’s my next one?”. He was by far the most disappointed when the gifts were all opened. LOL
Tray was definitely thrilled with his “bow and arrow” (thank you nerf for the creation of a lovely crossbow). He was very tolerant of the opening of his gifts, as I in advertently kept handing him clothes and he was very polite and enthusiastic about everything he got. But eventually, we got to the “good” stuff and he enjoyed it all.
Marriela was probably the one most excited about Christmas. She held it together so amazingly well all day Christmas Eve. Each time she started to get to worked up, she’d look at us and say “I’m going to be good for Santa.” LOL And then she would go and sit down and “be good”! Christmas day she opened her gifts at a maddening pace and ohh’d and ahh’d over each one for exactly 2 secs each. Then the rest of the day she spent putting on her gifts, losing her gifts, crying she couldn’t find her gifts, finding her gifts again only to start the whole process with another gift. LOL And so we have our Marriela back.
Joshua, after he had opened all of his gifts, was the one that I realized probably got short changed this year. There wasn’t that one “ohh I got it!” gift. I thought we had it all set, but shopping for 6 kids got a bit confusing and I missed one for Joshua. But, with that said, he seems very, very happy with his gifts and he did get a lot!
Sergio, Sergio, Sergio. . . He was NOT up for the craziness of gift opening. He opened one gift and then played with it for a bit, before making it very clear he would be happier in his “own zone”, the crib. So off to the crib he went where he happily played while we opened. After it was all cleaned up, Sergio re-joined us and had a fantastic day! He has been soooooo happy and healthy the last few days it’s hard to remember him so sick just a week ago. He continues to be a far bigger fan of Peachy’s (the dog) new metal dog bowls than he is of any of his new toys. He spends more time than I would like whipping those dang metal bowls around my kitchen and in his room (off of the kitchen). They are very, very loud.
And then there is the Wii. Yes, I’m addicted to this thing! I am actually very, very SORE from playing! I went and rented a couple of more games from Blockbuster and Peter and I sat on the floor like idiots playing Beestie Boarding from the Rabbids game. I also have to admit that boxing is A LOT of work! Joshua and Trayvon LOVE the Wii. Joshua perfected his bowling technique and was doing fantastic by hour number 4. He was also so tired he had to pull up a chair to play! LOL
Peter and I are so blessed to have the children we have. We were talking about how we just squeaked by this year, as it was a hard one. Lots of illness, to many hospital stays. We almost lost Trayvon. We did lose my Dad. But, we also had some wonderful memories. Sergio has come to stay. Everyone celebrated another birthday. We are now all healthy (in relative terms) and God is Good.
We hope everyone had a happy and healthy Holiday.
Merry Christmas,
Take Care and God Bless,
Renee and the gang
Monday, December 22, 2008 10:42 AM CST
I don’t know how you can do a whole update only to find it never posted to the site. VERY frustrating.
Well, winter has blown in with a vengance for just about everyone. The kids had a snow day today and I am praying that they get to go tomorrow, or they will miss all of their parties.
Sergio is FINALLY feeling better and today is the first day in a very long time, he hasn’t needed any motrin to ease his discomfort. I’m sure he still feels the “fullness” in his ear canal but is doing well today and hasn’t complained at all. We had to miss his Low Vision assessment today and I was really sad. Lately he has begun blinking ALL the time and very hard, like his eyes are dry or something. He still hasn’t had his prosthetic back in because lately we’ve also noticed a lot more eye shaking and drifting which would make the prosthetic very uncomfortable to wear. We don’t want him sticking his fingers back in it and getting it infected again. The assessment is rescheduled for next Tuesday. We go to ENT tomorrow for a history and physical and to be put on the surgery schedule for his replacement ear tube and to have the infection suctioned out from behind his ear drum. We pray he does as well with this anesthesia as he did with the last one!
Everyone else is doing well. I am thinking I am going to have to call surgery again for Tray though, because, without any stitches holding his central line place, it moves in and out A LOT whenever I change his dressing. I can’t secure any tape directly to the tubing, because it is too hard to remove at cleaning time and it pulls the line out even further when I have to pull the tape off (learned this the hard way LOL). He either needs it re-stitched or removed due to the fear of it coming out and him bleeding every where due to the coumadin he’s on. If we were using it daily then it wouldn’t be a consideration, but right now, we’re just using it for once a month labs and his intermittent visits to the ER. We see cardiology in January and I’ll talk to them about it. Maybe it’s time to look at a port which is a wonderful device and offers the secure access when needed, but is out of site and mind when we don’t. Again, we’ll chat in January.
I made a turkey dinner last night (since Peter’s dad and my mom were suppose to be here, but neither could come due to the back to back storms). Today I just made a wonderful homemade Turkey noodle soup and the kids are bugging me to eat it. LOL.
I spent 4 ½ long hours at the Mall (after spending over 45 minutes just getting into the parking lot!) and was fortunate enough to finish all of our shopping. The kids are going to have a nice Christmas. As well as a very white one! LOL
Without going into lots of details, I just want to say that we are an amazingly blessed and humbled family. We are doing ok. We are not in a poverty situation at all, but. . . Like everyone else, times are tight. We were recently blessed from 2 different directions and I just want them to know how very, very much we appreciate their thoughts, prayers, and generosity. We really are blessed to have the people around us that we do.
Well, that’s about it. My soup is calling me and the snow is falling like crazy!
I’ll update with Sergio’s surgery date as soon as I know it.
Take care and God Bless,
Renee and gang
Tuesday, December 16, 2008 1:56PM CST
Poor Sergio has been through the wringer. . . the antibiotic has now resulted in severe diarreha and I'm fairly confident it's C-diff. It has that smell you NEVER forget once you've experienced it. C-diff, for those lucky enough to have never experienced it, is when a bacteria, normally present in our bowels, is allowed to grow expotentially, due to long term or high dose antibiotics. It's usually kept in check by the other normal bacteria in our digestive tract, but when antibiotics go in and kill the infection causing bacteria, they also kill off the good bacteria, allowing the C-Diff to multiply out of control. The treatment. . . another antibiotic believe it or not. Joshua had C-diff 8 times while on chemo (and therefore, antibiotics as well due to neutropenia). It was awful then and it's just awful now for poor Sergio. He lost a kilo (over 2 pounds) in just 5 days, so we HAVE to feed him to keep his weight up, but that also gives the belly that much more to dump and to cause cramps. On a good note, his ear does look better. In addition to the inside of his ear, the rash behind the same infected ear, is also almost gone. Apparently the Rocephin is working well on that also. We go back tomorrow to have his ear looked at again and if it's still red or there's pus present, we'll continue the shots. If it continues to improve and looks almost better tomorrow, then we'll stop for now and wait until he can be seen next week to get on the surgery schedule. The shots are working for his ear at this time. They're just tearing up his little belly as well.
On another note, I did Joshua's IVIG!! The VNA nurses did show up, unexpectedly and accessed him. I did the entire set up and prep and started the infusion. They left about 10 minutes after it started and I watched him the rest of the time, flushed and de-accessed him with no issues at all. Next infusion, they are teaching me how to access him myself. With that said, I am still looking for an RN who would want to do the case so I am not responsible for this alone. But, it WAS nice to be home and not have him miss any school to do the infusion.
The rest of the kids are well. Peter has a sinus infection as do both of my nurses. I haven't had a day nurse the past 2 days or tomorrow as well. My night nurse was out last Sunday due to the same thing. So much crud out there. Please pray that I don't catch any of this!
Well, that's it for now.
Take Care and God Bless,
Renee
________________________________________________________________________________
The verdict is in, Sergio will need to have another set of tubes put in ASAP. His ear drum is bulging with infection and the tube is blocked with pus and crud. The doctor was surprised that he hasn’t been running very high temps and said that this is very painful and Sergio is doing wonderful considering how much discomfort he must be in. He said to have at least another 2 days of Rocephin shots and then assess him on Thursday. If he continues to have infection (but his ear did look better today than yesterday according to the Pediatrician) then they will admit and do an emergency surgery. However, if we can clear the infection for now, they will see him next Tuesday at Ent again and get him on the surgery schedule for the week after Christmas. It shouldn’t be a big deal and I will push to come home the same day, since they did nothing special for him after the last surgery as an inpatient. We will continue with the shots tomorrow (and boy do they HURT!) and I’ll start to taper off the steroids this weekend. Today he was much wheezier, but overall, his sats are better and he’s coughing a lot less.
Tray woke up and looked “off”. Not long after he vomited. I checked his sats while he was getting sick and he had dropped all the way down to 79 but after a few moments of rest, they came back up to his normal 86 -87 range (normal for you and I - and suppose to be for him is 95 100 I brought his meds to school to check on him and he looked good and had breakfast with no further incident. So we’ll just watch and see.
Joshua did NOT get his IVIG yet. I was suppose to meet VNA today, but I had to take Sergio to the ENT. I am still waiting to hear from them if they are willing to come this afternoon to access him and get us set up so we can get this out of the way in case Sergio does eventually go inpatient. I HATE having to rely upon unreliable people! This will never happen again (at least I pray it never does). If they can’t come tonight, then maybe tomorrow morning, since I don’t have anything that I can’t reschedule.
Overall though, I’m less stressed as we manage to get more and more of the appointments under our belt and less and less looming over my head. LOL
Till next time,
Renee
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We did make it to the party and we had a great time. I actually had TOO good a time and paid the piper the next day. LOL On Sunday, I was not in any condition to make it to church, but did make it to Nettie's Mission's trip meeting. She is getting excited for this trip. I am getting nervous!
Today I was suppose to give Joshua his IVIG at home. However, when I called his RN who was suppose to come in to do the infusion, she "forgot" to write it down, and wasn't going to be able to come. (by the way, I fired her) Then I am told that the VNA is coming to do a teaching on how to access the port and get the medication running. I just accepted that I would have to do it on my own. BUT, then the VNA lets me know (at 9:00am) AFTER I kept Joshua home from school, that they can't come until after noon. Well, Sergio is still sick and I needed to take him to the doctor and couldn't wait until that late to take him, so I declined their visit today. Now they are suppose to come tomorrow, but Sergio is suppose to go to the ENT at 8:00am and VNA is coming at 8:30am, something has to give. So I will see if VNA can come on Wednesday instead, so that Sergio can go to the doctors. BUT, my nurse was quite sick today and may not be able to come in and that will change everything again.
I did take Sergio in today due to continued to congestion. He sounds like crap. We discovered he had another severe ear infection in his right ear. That's his third infection in that ear (even with the PE tube in) in less than 3 months. Plus he had only finished his antibiotic five days ago. We'll have to do something else. I don't know what, but this can't continue. Each time that ear gets infected, his chest gets terrible. He needs to stay infection free. He got two shots of Rochepin to try and get to the root of this infection. The plan is to have his ears looked at again tomorrow and if they don't look much better then he will be admitted. If his ear looks better but his chest is still cruddy after another 48 hours, then he will be admitted. In that time frame, I need to get Joshua's IVIG done somehow. I'm doing Nettie's infusion tonight so that it's out of the way and I did all of Trayvon's dressing change and flushing last night so that is also done until next Sunday.
Well, that's it for now.
I did also make it to my Bible study party and had a blast playing Christmas Family Feud and eating some great food.
I really am blessed with some amazing women in my life and I don't take for granted their friendship for one minute.
Merry Christmas and God Bless,
Renee
Tuesday, December 16, 2008 1:56PM CST
Poor Sergio has been through the wringer. . . the antibiotic has now resulted in severe diarreha and I'm fairly confident it's C-diff. It has that smell you NEVER forget once you've experienced it. C-diff, for those lucky enough to have never experienced it, is when a bacteria, normally present in our bowels, is allowed to grow expotentially, due to long term or high dose antibiotics. It's usually kept in check by the other normal bacteria in our digestive tract, but when antibiotics go in and kill the infection causing bacteria, they also kill off the good bacteria, allowing the C-Diff to multiply out of control. The treatment. . . another antibiotic believe it or not. Joshua had C-diff 8 times while on chemo (and therefore, antibiotics as well due to neutropenia). It was awful then and it's just awful now for poor Sergio. He lost a kilo (over 2 pounds) in just 5 days, so we HAVE to feed him to keep his weight up, but that also gives the belly that much more to dump and to cause cramps. On a good note, his ear does look better. In addition to the inside of his ear, the rash behind the same infected ear, is also almost gone. Apparently the Rocephin is working well on that also. We go back tomorrow to have his ear looked at again and if it's still red or there's pus present, we'll continue the shots. If it continues to improve and looks almost better tomorrow, then we'll stop for now and wait until he can be seen next week to get on the surgery schedule. The shots are working for his ear at this time. They're just tearing up his little belly as well.
On another note, I did Joshua's IVIG!! The VNA nurses did show up, unexpectedly and accessed him. I did the entire set up and prep and started the infusion. They left about 10 minutes after it started and I watched him the rest of the time, flushed and de-accessed him with no issues at all. Next infusion, they are teaching me how to access him myself. With that said, I am still looking for an RN who would want to do the case so I am not responsible for this alone. But, it WAS nice to be home and not have him miss any school to do the infusion.
The rest of the kids are well. Peter has a sinus infection as do both of my nurses. I haven't had a day nurse the past 2 days or tomorrow as well. My night nurse was out last Sunday due to the same thing. So much crud out there. Please pray that I don't catch any of this!
Well, that's it for now.
Take Care and God Bless,
Renee
________________________________________________________________________________
The verdict is in, Sergio will need to have another set of tubes put in ASAP. His ear drum is bulging with infection and the tube is blocked with pus and crud. The doctor was surprised that he hasn’t been running very high temps and said that this is very painful and Sergio is doing wonderful considering how much discomfort he must be in. He said to have at least another 2 days of Rocephin shots and then assess him on Thursday. If he continues to have infection (but his ear did look better today than yesterday according to the Pediatrician) then they will admit and do an emergency surgery. However, if we can clear the infection for now, they will see him next Tuesday at Ent again and get him on the surgery schedule for the week after Christmas. It shouldn’t be a big deal and I will push to come home the same day, since they did nothing special for him after the last surgery as an inpatient. We will continue with the shots tomorrow (and boy do they HURT!) and I’ll start to taper off the steroids this weekend. Today he was much wheezier, but overall, his sats are better and he’s coughing a lot less.
Tray woke up and looked “off”. Not long after he vomited. I checked his sats while he was getting sick and he had dropped all the way down to 79 but after a few moments of rest, they came back up to his normal 86 -87 range (normal for you and I - and suppose to be for him is 95 100 I brought his meds to school to check on him and he looked good and had breakfast with no further incident. So we’ll just watch and see.
Joshua did NOT get his IVIG yet. I was suppose to meet VNA today, but I had to take Sergio to the ENT. I am still waiting to hear from them if they are willing to come this afternoon to access him and get us set up so we can get this out of the way in case Sergio does eventually go inpatient. I HATE having to rely upon unreliable people! This will never happen again (at least I pray it never does). If they can’t come tonight, then maybe tomorrow morning, since I don’t have anything that I can’t reschedule.
Overall though, I’m less stressed as we manage to get more and more of the appointments under our belt and less and less looming over my head. LOL
Till next time,
Renee
________________________________________________________________________________
We did make it to the party and we had a great time. I actually had TOO good a time and paid the piper the next day. LOL On Sunday, I was not in any condition to make it to church, but did make it to Nettie's Mission's trip meeting. She is getting excited for this trip. I am getting nervous!
Today I was suppose to give Joshua his IVIG at home. However, when I called his RN who was suppose to come in to do the infusion, she "forgot" to write it down, and wasn't going to be able to come. (by the way, I fired her) Then I am told that the VNA is coming to do a teaching on how to access the port and get the medication running. I just accepted that I would have to do it on my own. BUT, then the VNA lets me know (at 9:00am) AFTER I kept Joshua home from school, that they can't come until after noon. Well, Sergio is still sick and I needed to take him to the doctor and couldn't wait until that late to take him, so I declined their visit today. Now they are suppose to come tomorrow, but Sergio is suppose to go to the ENT at 8:00am and VNA is coming at 8:30am, something has to give. So I will see if VNA can come on Wednesday instead, so that Sergio can go to the doctors. BUT, my nurse was quite sick today and may not be able to come in and that will change everything again.
I did take Sergio in today due to continued to congestion. He sounds like crap. We discovered he had another severe ear infection in his right ear. That's his third infection in that ear (even with the PE tube in) in less than 3 months. Plus he had only finished his antibiotic five days ago. We'll have to do something else. I don't know what, but this can't continue. Each time that ear gets infected, his chest gets terrible. He needs to stay infection free. He got two shots of Rochepin to try and get to the root of this infection. The plan is to have his ears looked at again tomorrow and if they don't look much better then he will be admitted. If his ear looks better but his chest is still cruddy after another 48 hours, then he will be admitted. In that time frame, I need to get Joshua's IVIG done somehow. I'm doing Nettie's infusion tonight so that it's out of the way and I did all of Trayvon's dressing change and flushing last night so that is also done until next Sunday.
Well, that's it for now.
I did also make it to my Bible study party and had a blast playing Christmas Family Feud and eating some great food.
I really am blessed with some amazing women in my life and I don't take for granted their friendship for one minute.
Merry Christmas and God Bless,
Renee
Saturday, December 13, 2008 6:58 PM CST
I hate to even mention the fact that we’re going to try and sneak out tonight to a Christmas part, but . . . We are. We’re going to be an hour and a half late, but that’s the earliest I could get a babysitter, but it will still be very nice to be out and about.
Tomorrow, I’m going to Church and my Bible Study part if I have to bring the sick child (which ever one it is) with me!
Actually, everyone has made a nice turn for the better I am happy to finally report. Tray’s cough is far and few between. Cody’s cough and asthma are doing much better and we started to wean his steroids down tonight. Marriela actually went to school the next day with only a mild complaint of a little tummy pain (never needed any pain meds or ran any other fevers!) and Nettie’s all done with her cold it appears. Joshua has been having more seizures and he had a big drop one the other day and crashed into the dog dishes, getting himself soaked, so we’re watching him closely to see if he’s beginning to get sick. He tends to seize more when he’s ill.
Then there’s Sergio. . . I “think” he’s getting better. I say I “think” because I’ve not had him this sick since his arrival so I am assuming (I know, bad to do) that he’s lungs, as bad as they sound now, are improving. I will give him until Monday on the steroids and if he doesn’t sound better by then, then he will have to go into the hospital. But, with that said, he is doing ok. He’s on a lot more oxygen than his normal, he sounds terrible, his cough is awful and needs a lot of medication support, but he’s willing to get on the floor, play and be active. So we’ll give a bit more time.
Friday I took Sergio to the cardiologist for a quick check to be sure all was well with his heart, especially in light of the events of the past week. I’m thrilled to report that his heart his absolutely healthy! Very cool.
Monday, Joshua is suppose to have his first IVIG treatment. It’s been so disjointed I have no idea if it’s going to actually happen or not, so we’ll have to see what happens. I pray it all goes well, since it is to late to get him into the infusion clinic and he REALLY needs his IVIG now since everyone has been sick and he’s having more seizures. Tray is also suppose to go the eye doctor on Monday, so I hope the IVIG is all done by that point so I can go get him and take him.
Well, that’s just a quick update for now. Gotta grab my taco dip for the party!
Take Care and God Bless,
Renee
Wednesday, December 10, 2008 7:16 PM CST
What a frustrating start to the winter. We had a terrible summer and I pray the winter is no where near as bad, but it's not looking good so far.
Yesterday I had to take Trayvon and Cody to the doctors to address the coughs that have kept them (and me) awake ALL night for the past 3 nights. Tray is now on an antibiotic for an ear infection (he didn't feel) and we got some Claritin for Cody to try and dry up some of these secretions causing him to cough non-stop. In addition, both boys got some Tylenol with Codeine for night to finally let them (and me) get some sleep.
Then today, at 5:20am, my nurse calls me to come down stairs. Sergio is doing some very funny stuff with his breathing and she is concerned. I felt something was up, as he awoke yesterday from his nap with a fever and was breathing fast. Apparently about 4:30am his sats dropped hard and fast and she had a hard time getting him to come back up. It happened several more times and even on 1 liter of O2, he was still only in the high 80's. . . definatly not normal for Sergio. So the day nurse, Stacey and I watch him carefully after my night nurse left and lo and behold, he did it several more times. One time he dropped to the 60's (very low) and even with me shaking him he didn't come up until he coughed. As soon as the ped opened, I called them and we went straight in. She sent us for a chest x-ray at the hospital so that his pulmonologist could also review it. On the way there, he dropped way down to the 60's again and just sat there, not trying to do anything to help himself. His eyes started watering and he was getting paler and paler, but I was under an overpass and had no where to pull over, I was beyond scared. I reached back and pinched him and he started crying and his numbers came right back up. He's done it several more times today as well. His x-rays were fine unfortunately, since that would have helped rule out why he was doing this. As a precaution, we increased his steroids significantly to see if that helps with the respiratory status. We have strict parameters for tonight and when we need to admit him. If he drops to the 70's 2 or more times or into the 60's one time, we are to go straight to the ER where he will be admitted to the step down unit for close observation. At times like this, I am beyond grateful that I fought for the nursing! I will sleep downstairs tonight with the nurse to check him myself "if" he pulls any little stunts. Plus, that saves me from waking everyone else up when I have to leave.
On top of that, Marriela came straight off the bus with a bad headache and belly ache and refused all food. About an hour later she had a 102 fever. She has now also been fully medicated and I pray she feels better in the morning so that there are no sickies here (other than Cody) to have to try and accomodate if I'm inpatient with Sergio. Ugh.
Please pray that all settles down here in the near future. We have some fun things (we meaning me) with my friends (some parties with girlfriends and a night out with the 5C moms that I REALLY would like to make). I've had to miss all but 2 MOPS meetings and had to leave both early due to sick kids. I've missed several Bible studies and many "girlfriends" nights out. It's frustrating that the cycle never seems to get broken.
Ok, all done crabbing about things I have no business crabbing about.
Take Care and God Bless,
Renee
Monday, December 8, 2008 8:36pm CST
Hi again,
I had a whole update done, but it disappeared into cyberspace when I checked the site to see if it was there. Bummer.
Well, we continue to nurse our sick little ones here. Cody is now going to start steroids tonight. He has continued to cough non-stop and his lungs sound terrible. We think his ears are getting better, but his behavior tells us that he is still not well.
Tray has also developed the cough from @# which wracks his whole body bringing him to the brink of vomiting. But, other than the cough, he seems fine otherwise. We pray that he doesn’t progress to the level Sergio and Cody got to, as that would be very bad news for him. But, so far so good.
Joshua is doing well other than his daily seizures. However, he hasn’t had any drop seizures in quite some time. YEAH!
Marriela has actually improved and hasn’t needed any nebulizers today.
Nettie saw the eye surgeon who gave her an all clear today. He now thinks (though has no proof) that it may have all been a residual problem left over from retinopathy of prematurity. She was a 28 week preemie so it is a plausible explanation in my book.
This week we go tomorrow with Joshua to a bone density scan to see how his osteoporosis is doing. Sergio goes to the cardiology clinic on Friday to be sure there are no underlying cardiac issues that affect his need for oxygen. I doubt there is but it’s good to check. Trayvon has a CSE meeting to get him into Adaptive PE in place of regular PE which he is banned from for medical reasons. That’s about it this week.
Till next time,
Take Care and God Bless,
Renee
________________________________________________________________________________
Hi there again,
Well, the peace is at a temporary stand still, as Cody now has two painful, infected ears and a high fever. We went to the pediatrician already and have antibiotics on board as well as some wonderful numbing drops. We are going to try and attempt our first (and only) Christmas party today. Normally we have three. But, today they held both the immunology party AND the oncology party on the same day so we had to pick one. The kids all love both, but with Joshua and Annette not here, we decided to go to the immunolgy party at the hospital. Then, we also usually go to the Familycapped party. BUT, again, Nettie and Joshua are at Casey's Place and have to be picked up right in the middle of the party, so there is no sense in going for a 1/2 hour. Nettie asked me to be sure to get her "present" from Santa today at the party. LOL
The rest of the gang is still holding their own. Marriela is doing a lot of extra neb treatments but that seems to be holding her asthma in check. She's a terror on steroids so I will avoid that at all costs! LOL
Waiting for the peace to return. . .
Renee
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Hi everyone,
It has continued to be chaotic here, but somewhat more calm today so I finally get a chance to update.
First, Sergio is doing much better. Our trip to the ER was a complete waste of time, as they just wanted to admit him with no clear reason what they would do differently than we would do at home. In addition, I had wanted them to help me remove his eye prosthetic and they refused, despite clear indication there was an infection behind it. So I brought him home and the nurse and I came up with a plan that actually worked and we were able to remove the prosthetic and revealed a nasty looking infection. We took him straight to the pediatrician who put him on a different antibiotic, added and eye antibiotic and gave him some pain meds to address his discomfort (which was causing respiratory issues). He is now back to his happy, healthy self!
Yesterday, after enjoying seeing Sergio feeling better I got a call from Trayvon's school he was in the nurses office. She said he came in dizzy and she was unable to obtain any blood pressure on him and he looked 'bad'. So I agreed to be there in a moment and ran out the door with the sat monitor and called cardiology on the way. While on the phone with cardiology the nurse calles back in and says it's time to call 911 and I agreed. I showed up, hooked him and the school went into a "Code Blue" lock down. Just before the fire department arrived he vomited all over and started feeling better. He still experienced his first ride in an ambulance and we just had some tests and lab work and came home. We're pretty sure the extra med we were giving him to control his arrythmia's is what caused the severe drop in blood pressure resulting in his dizziness and ultimately his vomiting. We are no longer giving him the higher dose of med and now wait for the heart rate issues to begin again. We're in a gray zone now. There are other meds to use for the arrythmia's but they are not good for long term use and they also reduce the arsenal we have for the times he is in a severe arrythmia and his heart is in major trouble. So we may just have to "live with" the atrial flutter if we can't control it with minimal doses of some of the harsher meds. It also means looking at the transplant route a bit closer again.
Then today Nettie calls me from school to tell me she has a severe sinus headache. I offered to come and get her, but she opted to just have me bring her some motrin and stay for the rest of the day. What a trooper!! I would have taken that day off in a heart beat! LOL
So, we've been busy. But things are looking a bit calmer again for the moment and we're going to savor every minute of it while it lasts.
Take Care and God Bless,
Renee
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UPDATE:
I'm leaving the clinic as soon as Peter relieves me to go get Sergio and take him into the ER. He's still not well and seems to be getting more ill, not better so it's time to take it to a higher level. Prayers would be welcome!
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Happy December!!
We went out of November with a bang yesterday. . .
Sergio is still quite sick and not feeling well at all. I really wish I was home with him right now, as I would definately take him to the doctors again. But, I'm stuck at IVIG all day. If we get out of here early enough, then I will still call and see if I can get him in. Lots of coughing, several explosive diarreha's yesterday and he's practically trying to chew his hands off because his mouth is so sore. He's been doing round the clock motrin for a while now and it's the only time he feels well about an hour to an hour and a half after the motrin kicks in and then he starts in again with 2 hours still to go until the next dose.
While Sergio was in the middle of a major breakdown yesterday, Tray announced his heart was going too fast again. UGH!! Sure enough, we put on the monitor and he was cruising along at between 180 and 200bpm. I called the cardiologist on call and let him know. He told us to give him an extra dose of his rythm medication and see what happens. I did and was packing my bags, trying to calm Sergio down, trying to appease Marriela (since I had promised we could put up some Christmas decorations and she wasn't going to let me NOT do it!) and clean the house up a bit before heading to the ER. Just as Sergio was calm, my bag was packed, my laundry was folded, my decorations were up and the dishes were done, the monitor says his heart rate is back to normal again. Interestingly his sats were also in the normal range! That was a pleasant suprise. I left him on the monitor all night. I gave him his evening dose of antiarrythmia med at 10:00 pm and since he was getting his lasix so late I got him up at 1am to pee. He had already wet unfortunately. His sats were 98 at that time but after he came back from the bathroom he started coughing. Right after he started coughing his sats fell back to the high 80's again. Then he went and vomited in the bathroom. I'm sure we're not out of the woods but we're doing better than we were.
I'm going to call the ped now to see if I can get Sergio in a soon as I'm out of here.
Take Care and God Bless,
Renee
Thursday, November 27, 2008 8:26 PM CST
UPDATE:
We had a nice, low-key, Thanksgiving for the most part. I say for the most part, as Sergio was quite sick. He was pretty much miserable other than when he was sleeping and then would wake up miserable and trying to rip his eye prosthetic out and just cried so sadly. Wednesday he had been diagnosed with an ear infection due to some behavioral issues and banging on his head and such so we started an antibiotic on Wednesday. I didn’t give him any additional steroids, since he didn’t seem to be “stressed” which is when he needs the additional steroids due to adrenal insufficiency. Yesterday afternoon, I began to think that he really was having a hard time and should go ahead and give him his stress dose. Last night his heart rate was almost 200 all night. He vomited and had two severe episodes of diarrhea at 8:00pm and was very, gaggy. I didn’t dare feed him anymore. I gave him his stress dose again last night along with his antibiotics and , since I had no night nursing due to a family emergency with our nurse, floundered through the night. At 4:00am he spiked a high fever and was really breathing incredibly fast. I was really worried. This morning, he was definitely doing better. I realize now, that he was probably in what they call, adrenal crisis, and should have taken him to the ER and given him his stress dose of steroids starting on Wednesday rather than waiting until Thursday afternoon. He could have become critically ill and I didn’t even know the signs to be looking for. I was so angry this morning when I realized what the problem probably was.
I am praying that now he has had several doses of his antibiotic and steroids, tonight will be much calmer and smoother, as I still don’t have a nurse and Peter is out of town! LOL Other than that though, all is well here. The rest of the kids are doing well. Cody has a cold, BUT, since starting the Prevacid, he’s not had it progress to the croup yet which almost ALWAYS happens by now. So maybe, just maybe, we have one simple fix in the house. LOL The rest are well.
Well, Sergio is in my kitchen pulling down all of the cereal boxes and laughing at his handiwork. Peachy would just LOVE to dive into a box of “Fruity Crisps” (yes, I only buy the generic of the sugar stuff LOL) so I can stay awake all night giving her insulin and taking blood sugars. I DON’T think so!
Hope everyone had a happy and healthy Thanksgiving!
Take Care,
Renee and the gang.
________________________________________________________________________________
Hi everyone!
(medical update at end)
I can hardly believe that Thanksgiving is already here! Anyone that knows our family, know that we have so many, many things to be thankful for. Namely, our six amazing, wonderful, beautiful children that have blessed our lives. Each one, in their own way, are individual examples that miracles do exist. From Nettie, who was born at only 28 weeks old (and that was very, very young 18 years ago!) with so many things stacked against her and to see her now, planning her life on her own as an adult. To Joshua, who was giving virtually no hope of successfully beating the cancer, let alone the incredible tolls that the surgery had taken on him. To see him now, dealing with all of his issues and still smiling every day and completely unaware that he has challenges. To Tray, who is so completely aware of his challenges and deals with the emotional, social and physical ramifications of those challenges daily. To see him know, as a maturing, smart, animal-loving child who has the heart of gold and tries to so hard to face his challenges with a positive attitude, even when he doesn’t want to. To Marriela who was born at only 26 weeks and only a 1lb 12oz and was dependent on the ventilator for over the first three months of her life. To see her now, as a truly beautiful little girl (and I mean beautiful!) who tries so hard to deal with her inner turmoil, while lighting up a room with her amazing smile and her comedic wit. To Cody, who was a true surprise almost 10 years to the day after Joshua! It is such a pure joy to watch Cody develop into such a bright, socially outgoing, loving child. And last, but certainly not least, there’s Sergio, who has overcome some incredibly difficult obstacles to be a part of our family. To see him now, learning to stand, starting to eat, understanding humor and being an active member of our family, is truly like watching a miracle in the making.
There are so many other things we are thankful. Our friends, who continue to amaze us with the love and support shown, even when we don’t feel we need or deserve it. Our family, who has taken our family and embraced it with all of the challenges that come with us. And complete strangers, who have prayed, supported or otherwise been a beautiful part of our lives.
With all of that said, I should also do an update on the kids as well.
Annette: doing great as usual. She had a self-determination meeting where we decided when her staffing would work. That was exciting. Otherwise, she’s great!
Cody: Saw the pulmonologist today. He surprised Peter and I completely when he said he felt 90ure that Cody’s terrible asthma attacks are caused, and worsened by, REFLUX! He also feels that he probably had two aspiration pneumonias vs. the standard bacterial pneumonias. We started Prevacid tonight with hopes that this is the cause of his constant belly pain and will reduce his need for ER visits all winter long. He also agreed with Dr. Mortelliti (the ENT that Cody saw on Friday) that we should run immunology tests as well. So Cody had 6 tubes of blood drawn to rule out any underlying immunology issues like his brother. While at the ENT it was deemed that Cody has severe negative pressure in both ears, but without an apparent reason. This is what causes him the pain, not infections. That, coupled with the thickening of his sinus areas at such a young age was the reason the doctor wondered about immune issues. However, believe it or not, Reflux answers all of the issues! So now we wait and see. The pulmonary doc also wrote a script for Orapred to have on hand and if Cody develops any croup, then we are to immediately begin a three to five day burst of high dose steroids to try and nip the asthma attack in the butt.
Sergio: Also saw his pulmonary doc today (different doc than Cody did, that was a bit complicated!). He continues to be amazed at Sergio’s progress and approved him to be off of oxygen 2 times a day for up to 30 minutes if his sats stay above 90 Little does he know, but Sergio can stay off of O2 up to 3 hours without dropping below 95any days! How cool is that! Tonight he’s hooked up to a small monitor to record his sats and heart rate at .5liters all night. If he passes the challenge then we will lower his daily set rate to 0.5 liters instead of the 0.8 he has been on since his last “challenge”.
Marriela: Doing great, no changes. Will do her three day dietary diary over the long break for Thanksgiving so I actually can see what she eats. Other than that, nothing new!
Joshua: Doing well as well. He has been having just a one or two seizures a day and most are just “fade” out seizures where he becomes disoriented and does some cheek puffing, but otherwise has no other major consequences. No drop seizures in about 2 weeks – no explainable reason why, just enjoying it while it lasts! Unfortunately, we don’t have our first home infusion set up yet and the nurse can’t commit to a set day next week so we’re going to have to do one more in the clinic. I called to make the appointment today. Bummer. Joshua’s also seeing the allergy specialist next Wednesday to follow up on his eosinophillic gastritis or esophogitis or whatever they’re calling it now. May just be a waste of time, find out after we go I guess. But he did have another severe tummy ache last night that required some pain meds as well as a night in our bed. There were tears and all so I don't doubt the pain at all.
Tray: Saw the cardiologist yesterday. His labs looked great that I drew the other day. No changes in his coumadin or lasix levels at this time. We did start him on a new medication approved for refractory pulmonary hypertension that has also just begun to show benefits in kids with high fontan pressures as well. It is well know on the market as Viagra, but we’ll call it seldenafil for the sake of Trayvon! LOL It’s a powerful vasodialator so we have to be careful that his blood pressure doesn’t drop too low. But, with any luck this may increase his sats and his exercise tolerance. Tray is vomiting more often (lost his breakfast this morning) so we’re keeping a close eye on him.
Well, that’s all for now!
May you all have a happy and thankful Thanksgiving.
Miss you Dad!
Love,
Renee
Monday, November 17, 2008 2:10 PM CST
Hi everyone,
I know, I've been remiss again in my updates. For the most part, that's great news. LOL
All are well. Today I spent the day with Joshua at Upstate for his IVIG infusion. We met with the new nurse that will be doing his infusions at home starting in two weeks. We also started the process of ordering his supplies and getting everything set up so it will go smoothly for his first home based infusion. We did have some trouble accessing him today and he did so wonderful being patient as they accessed, missed, de-accessed, re-accessed, missed and then had him move to a lying down position, de-access and reaccessed again. He had a few tears in his eyes, but held it together and did fantastic the rest of the infusion. He also had to get some IV benedryl due to some major itching around the tape holding his needle in. It did the trick. The home nurse was there for all of it, so she saw how well Joshua will comply (I pray this will be the same at home as it is at the clinic)and how we just make adjustments on the fly as needed.
He and daddy just left for Rochester for Joshua's neurology appointment. I pray the weather cooperates!
Sergio is doing wonderful and can now get up steps all by himsself. However, he tends to like to turn around at the top and tetter precariously with no sense that if he goes face first he'll be sorry. LOL So his PT is working hard to teach him the "safe" way to get down vs. his method which will prove to be much more painful.
Cody is doing great. He has his pulmonary appointment next week. I'm looking forward to coming up with a plan for his asthma attacks sans the ER!
I got a call today from Marriela's NP at the Developmental Peds Clinic and she informed me that Marriela's LDL (bad cholesteral) is very high though the total cholesteral is fine as is her triglycerides. So we're going to do a 3 day dietary journal but, most likely this is a medication issue or a genetic issue. Many kids have cholesteral issues, but few are tested at this young age unless they're on medications that require monitoring. If she weren't on the medicine, we'd never have known she had this issue I suppose. I doubt much will come of it though.
Nettie is doing great. She continues to crack my up. I came home from being at doctors all day and she was sitting at the computer working so hard. She asked me for my help in completing her homework. I said sure and sat down and we went to work on it before Tray and Marriela arrived. After we finished it I asked her when it was due (she is frequently given several days to complete an assignment). She then informed me that it's not due until JANUARY 23rd!!! That girl is very prompt with her work! LOL
Tray is doing well. We see Cardiology next Monday. Tomorrow I'm taking him up for his lab work we need for his appointment. I'm a bit worried as he went to a birthday party on Saturday and he vomitted. He said it was because he ate too much. But, today after putting them on the bus (in the usual mad rush that we are) I discovered small piles of vomit in the livingroom. I thought maybe one of the dogs did it first, but Cody insisted he saw Trayvon get sick. I don't know if Tray thought he was going to be in trouble or what and that was the reason he didn't say anything. I am afraid that he feels "bad" but doesn't want us to take him to the doctors or say anything about his heart, so he's hiding any symptoms he's having. I'm glad he's seeing the doctor in a few days. Otherwise, he seems to be feeling ok and is looking good.
We went to Peter's Dad's over the weekend to have an early Thanksgiving with him. Saturday was the 2 year anniversary of his Mom's passing and we wanted to be there for his Dad. It was a very nice day. Sergio impressed them all with his new sense of humor and new found mobility skills. Cody enjoyed wrestling with Grandpa and Joshua and Trayvon were totally into the football games on TV.
It seems we're going to be having our Thanksgiving as just our family. My mom is staying with my sister, Stephanie and my nephew, Justin, in Glens Falls. I miss my father so very, very much and it just seems impossible to believe he's not here to be sharing these times with us.
Well, that's it for now!
Take Care and God Bless,
Renee
Wednesday, November 8, 2008 2.30 PM CST
HAPPY 10th BIRTHDAY TRAYVON!!!!!!
My "baby" has now turned double digits. I remember him turning 4 years old down in NYC as I heard the devestating news he needed another open heart surgery. Now, he's six years older and, though he continues to struggle with his heart related issues, he has just blossomed into such a handsome sweet young man. We love you Trayvon!
Today Tray and most of the rest of the gang (minus me, Sergio and Cody) are up at the Great Northern Mall, where Tray is meeting up with several of his classmates to see Madagascar 2 and then to Friendly's for icecream. He was so hoping to have a sleepover, but his friend was unable to do so. Maybe another time.
Sergio and Cody saw the pediatrician on Thursday for their physicals and flu shots. Cody has a referal to pulmonary for his aggressive asthma and number of pneumonias. He will see Dr. Kusincky (?) on the 25th which was very coincidental since Sergio sees Dr. Hingre the same day at almost the same time in the same office. How's that for a little Divine intervention?
Sergio had to go back to the pediatrician for a sick call today due to worsening of his cold and two very, very bad nights. Last night my nurse worked from 8pm to 4am so I had to come down at 4. He had JUST fallen asleep since 1am and he sounded just awful. I had to keep turning his O2 up to keep his sats up and his heart rate is really going so I know he's struggling. The ped put him on some high dose steroids for 5 days to see if we can decrease the inflammation and prevent a pneumonia from happening. He is already sounding better since the first dose. He also has a yeast infection of his diaper area and behind his ear so he is on some diflucan. The doctor also cultured his ear and it shows he has a staph infection as well and we're waiting for sensitivities to start an antibiotic as well. For having so many things going on, he is in a very good mood, especially considering he has had virtually no sleep! LOL Tonight my nurse works from 10p to 6a so I should be able to get a full night sleep.
The rest of them are doing well. Marriela went to the Developmental Pediatrician who increased her Abilify to 2.5mg twice a day. He will continue to increase this med as long as she doesn't become sedated and it continues to show evidence of working for her. I LOVE this medication if only we could make it work longer. She is the sweet precious little girl I know when the med is working and she is a volitale, unhappy little girl when it's not. It's not fair to her and it hurts my heart to see and hear her being so unhappy when she's waiting for her next dose. I am anxiously awaiting our appointment with child psychiatry to be sure we're doing all we can to keep her on an even keel and addressing her needs to the best of our abilities.
I recieved a wonderful phone call last week from an RN responding to a Craig's List ad I put out for nursing for Joshua. She has lots of port and infusion experience and would love to work his case. She also has several friends that she will train in case she is ever unable to come due to illness or is out of town. She sounded wonderful on the phone and will come to 5c for Joshua's next infusion to see how they do it access him and what the IVIG protocol is that they follow. I'm so excited! LOL
Well, Sergio just fell asleep and Cody doesn't feel well, so he's in cuddle mode. I'm going to take advantage of the quiet and cuddles to take a nap.
Take Care and God Bless,
Renee
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Hi everyone!
We’re ticking along here and enjoying the nice weather. Joshua’s sinus crud has now been passed around the family and I woke up with a nice head cold. Sergio is also dealing with a lot of head congestion and it made its way to his chest today. Cody was back at the Urgent Care center on Sunday afternoon, just 2 days shy of his last visit and it was determined he had another pneumonia as well as an ear infection. His antibiotic is working well though and he is fever free. I’m a little concerned that his chest still sounds pretty bad and maybe he needs a sort burst of steroids. He and Sergio both go and see the pediatrician tomorrow for their physicals and flu shots. We’ll see what she thinks.
Joshua is doing well now. He did have a very large seizure in school last week and has had several more since then. I’m fairly confident that it’s the infection and antibiotic that has created the problem. Both are known to lower seizure thresholds so we’ll see how the rest of this month goes once the infection clears and his antibiotic is over.
Tray is doing great. His sats continue to only be in the 80’s BUT, sometimes we inch into the low 90’s so that’s an improvement. I had his parent/teacher conference last week and overall his attitude and work are all great. He really tries, but dislikes reading tremendously. Hopefully, as it becomes easier, he’ll enjoy it more.
Marriela sees Dr. Pelligrino tomorrow to review her medication adjustments. I’m sure he’s going to suggest revisiting the ADHD meds now that we have some control over her mood swings. I’ll have to give it some thought. But, her biggest downfall at school is her inability to pay attention for more than a few fleeting moments. They re-direct her all day, every day to keep her on task and it takes a full time adult most days to engage her in the school work. The classroom teacher is going to request a part or full time one on one aide for her. I knew that she was going to need it, but the school had to gather the evidence to support their request. We’ll see what they say in a few days.
Sergio is doing very well. He is now officially back in his old crib since he can pull to stand so well now. He is also signing more with some consistency and vocalizes upon request to let us know he wants to do more. He had his first dentist appointment yesterday and though he screamed and turned purple through the whole thing, he made it and even had his teeth polished. He does have some problem areas that were probably related to all of the high dose antibiotics used in the NICU. She felt though that most of his pain is coming from the 3 molars that are STILL trying to come in. She could feel the bumps but felt they were still a ways a way from breaking through. So he’ll continue to drool, mouth and yell in pain until they come in all the way. Oh yeah! LOL
Nettie is well and at the gym right now with daddy. She is going to the gym 2 – 3 times a week and was thrilled the other night when she tried on a pair of pants they were LOOSE on her! She said that they were to tight a couple of months ago and now they are loose. She was sooo happy to finally have some concrete evidence of her hard work. She also does crunches daily at home as well as deep knee bends and some modified pushups. She is very motivated right now so we’re working with her at a healthy pace to help her maintain her excitement about losing her weight but not focusing on it to much. There is a very fine balance for her. To much focus and she’s looking up tummy tucks and such, to little focus and she starts eating bags of Doritos up in her room.
I got a little to motivated for my own good today and decided to rip up our nasty old “white” rug on the stairs. The whole thing needs to go, but the stairs were terrible. It was hard, dusty and annoying work, but I did it!! Now I have a lot of work to do to refinish them so they look better. But to just know that the nasty rug is gone is a nice reward for the hard work.
Well, Marriela has just come into the bewitching hour and has transformed from a perfect angle into the devil himself before my very eyes. Time for some meds (for me and her LOL).
Take Care and God Bless,
Renee
Monday, October 27, 2008 1:55 PM CDT
Joshua's MRI results are in. . . we know what the problem is. . . A BAD SINUS INFECTION!!! I've never been happier to have one of my children have an infection before! LOL He will start some antibiotics today and we should see a nice improvement in him within a few days. Peter was suspicious of a sinus infection, but we needed to be very, very sure since the signs and symptoms all pointed to other possiblities as well. God is Good.
The rest of the kids are doing well. Sergio is going on Thursday to get his final eye prosthetic. He is going to be sooo handsome with his new "brown" eye in place. Next week he sees the dentist, the new pediatrician (and will get a flu shot), and goes to the eye doctor. He is doing very well with his new foot braces and stands very well in them with lots of support. We are still going to order him a special stander to give him a lot more practice standing and weight bearing for longer periods of time. Right now, he stands against things with you holding onto him, but he gets tired very quickly and then fights you to sit down. He needs to stand for much longer periods of time to really strengthen his leg muscles.
Cody is also seeing the new pediatrician next week with Sergio (he needs his 3 year old physical and his flu shot). He will also follow up with Dr. Mortelliti for his ears, but, they haven't bothered him since he finished his antibiotics a month ago so we may be in the clear for any more tubes. One can hope!
Joshua is actually feeling better, though he has a continuing cold. The antiobiotics should help reduce the inflammation and make it easier for him to blow his nose and reduce the post nasal drip at night that causes him to cough all night. He did have a big seizure yesterday evening just after we got home from Critz Farms and fell backwards over the rocking chair and onto the floor. I had Sergio in my arms and gently "tossed" him to the floor as I swooped down to catch Joshua as he rolled off of the rocking chair to the floor. Poor Sergio didn't appreciate this "toss" at all and protested loudly for a nice lengthy period of time. Joshua on the other hand recovered quickly and went right out back and began playing.
Nettie is doing very well as is Marriela. Marriela sees Dr. Pelligrino next week and I think we'll try increasing her morning dose of Abilify but I'd like to leave the after noon dose alone. We'll see what he thinks.
Well, that's it for now. Hopefully you're looking at new pictures. If not, then I failed to find the time to resize and upload the newest batch from my camera. Sorry!
Take Care and God Bless,
Renee
Friday, October 24, 2008 5:46 AM CDT
Hi everyone,
I really, really apologize to all those who came here to see what was happening and I failed to update. I'm usually sooooo good about doing the site and this time it just got away from me.
Ok, update:
The CT scan was not conclusive for hydrocephalus but it did rule OUT any masses!! We're very relieved to hear that part. The headaches have continued, but not as severe. He has a bad cold right now and feels pretty miserable from that, but we still went ahead with the MRI yesterday. He did great for it and really enjoyed his "nap" after the scan was over. I did feel terrible that the little ones (Tray and Marriela) missed their Halloween Dance at school because we didn't make it home in time. Now Marriela is pressuring me already for her "make-up" prize Daddy promised.
We also met our new pediatrician yesterday. She checked out Trayvon and Joshua and gave them both their flu shots. She was late getting into the appointment (almost an hour) BUT, once I had her, she was great at listening, went over all the kids, listened to all their stories and felt confident she was ok with their care. She signed all of the orders including the ones the old doctor wouldn't sign. That was a huge relief! So we now have a doctor again, one stressor down.
I'm hoping to hear something today on the MRI, I'm sure it will be fine, but felt strongly that his symptoms warranted a very close look, especially the hydrocephalus issue. I PROMISE, I WILL update once I get some news, any news about the scan.
I did hear back from the endocrinologist for Sergio and his adrenal function continues to be very low. Therefore, he has to continue with his current steroid dose until we see an increase in his function which can take months.
Well, till later today or tonight!
Love,
Renee
Thursday, October 16, 2008 8:35 PM CDT
Hi there,
Well, we had a decent weekend. Penn State whopped Michigan's booty, although, while Peter was on the field they were losing. As soon as he left the field they started turning things around, so I told him stay off the field!! I had a nice weekend with the kids for the most part. Joshua continued to complain of a headache and he had rapid mood changes where he would be very mean to a sibling and then become a happy go-lucky little boy again. I was less concerned as the weekend went on though as he didn't really sleep as much and he was able to be coaxed into fun stuff, much better than last Friday.
However, today he awoke and stated simply "My head hurts." I made him a bowl of cereal and then an english muffin when he started screaming that his head was hurting more and more. I tried a heatpack (anyone who knows Joshua knows he HATES cold and wet things LOL), but that was a no go. So I decided to call the clinic and tell him he was coming in early. We got here at 8:30 and he's all accessed, has had an evaluation by his doctor and labs drawn. They just gave him 50mg of benedryl via IV so he'll lay down and take a nap. He did have a seizure while in the evaluation but, it wasn't anything to alarming. His IVIG is ordered and we're settling in for a long day. Wish I had a book to read!
Thank you for your prayers and hope to update with nothing by good news in this evening or tomorrow morning.
Love,
Renee
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New worries:
I wrote recently of Joshua’s behavioral struggles at school, his complaint of a headache and his ongoing tummy aches. Well, they all came to a head this past few days. He stayed home from school yesterday with me and he was soooo mean! When he wasn’t being mean, he was sleeping. He slept from 10:30am to 3:30pm and then back to bed at 8:00pm until this morning, when he woke up at 7:00am. He is in a better mood today, but still having word finding issues and is “cranky” vs down right mean. With all of these changes I called the oncologist who felt the same way as I did, he needs an MRI of his head. We need to rule out anything big, bad and ugly and . . . unfortunately, these are the same issues he had at diagnosis 10 years ago. I have peace that there is nothing I can do if it’s back, so I’m not that worried, but your mind does start to wander into the “what if” abyss and that’s when my heart starts racing. So I’m staying busy until Monday when he will have a CT scan (he needs to be sedated for his MRI’s and there was nothing available right away, so we’re doing a CT scan first to see if there is anything really obvious and will follow-up with the MRI at the first available date). We’ll be at the hospital all day because he has IVIG first and then the scan at 4:00 and then back to the clinic to have his needle removed.
Tray’s wrist seems to be on the mend. The school nurse did feel it should be x-rayed since he had some increased swelling at the sight. But, it is not causing him any discomfort and he’s using it to play video games, so I’m not convinced it’s nothing more than a mild sprain. I guess only time will tell.
The rest of the kids are doing well. We’re looking forward to watching for Daddy on tv today at the Penn State game (no chance at all that we will see him, but it will be my ploy to keep the game on the tv instead of Disney Channel! LOL
I’ll update more as I know more.
Take Care and God Bless,
Renee
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Hi everyone!
Lovin’ the fall weather!! Things are going well for the most part around here. I’ll make this quick and easy by kid LOL.
Joshua had a big seizure tonight, as close to a tonic clonic you can get without being a full one. He was pretty out of it for a while and then he went to sleep nice and early tonight. He had a rough day at school with a lot of arguing and stubbornness. I am now thinking that the behavior was a precursor to this big seizure. I guess if he’s back to his happy self tomorrow, we’ll know. He is still having belly aches as well and that’s so frustrating. So tomorrow I’m calling Strong Memorial to get him seen by Dr. Kooroos (he’s the one that cared for Marriela and did a great job!).
Tray is doing well heart wise. He goes for his lab work tomorrow and I’m getting back into the swing of caring for a central line. You forget how much has to be done to care for them until you have to do it. . . cap changes, flushing, dressing changes, etc. However, tonight we did have a little mishap and I’m hoping all is well in the morning. He was standing behind me and we were playing and I playfully bumped him with my butt and he went straight down. Tray has little agility, something that has been an issue since his second stroke, so he made minimal attempt to catch himself and landed hard on his left hand. He screamed “you broke my wrist!” How’s that for a dagger to the heart! We iced it, gave him a motrin and watched it. It didn’t swell, or bruise yet and he can move it all over now so I think he sprained it, but since you never know with him, I suppose we’ll have to see how the day tomorrow goes. Sigh. He’s NOT one to put in a cast, he complains to much LOL.
Marriela is doing well. Finally got her braids done after 3 days. She looks so good. I have completed the paperwork for child psychiatry and will mail it tomorrow. Hopefully it won’t be to far in the future before we get an appointment.
Annette is wonderful. She’s relaxed a bit on her weight watchers diet (phew, as I am terrible at cooking to the core list LOL) but doing fantastic on her exercise routine! She walks EVERYDAY and goes to the gym 2x weekly. She’s far more dedicated than I, that’s for sure.
Cody is great as well. His ear hasn’t given him any issue at all since finishing his antibiotic so maybe, just maybe, we can be discharged once again from ENT! He’s talking so well and in such complex ways it’s hard to believe what I hear sometimes!
Sergio is doing very well. He got the first stage of his eye prosthetic (a clear plastic shell that goes over his own eye) and is doing fantastic with it! If he is able to wear it 24 hours a day non-stop, then in one month we can go for the painted one so he will have two matching eyes! His eye is so much more open with the shell in and I can’t wait to see what he looks like with to matching eyes. He also goes for his foot orthotics tomorrow. I’m pretty sure that once he gets them, he’ll be pulling to stand in the not to far future. He already gets up on his knees and we need to put him back in his crib now, since he is currently in a hospital “youth” bed with side rails (just like the youth beds in the hospital). When he kneels he’s getting dangerously close to tipping over onto his head. He is also getting lab work tomorrow to see if his adrenal glands are waking up yet! If they are we can begin to lower his dose again. I’m so excited to see him off of the steroids, what a difference it will be!
Well, other than a continuing nagging respiratory crud, I’m doing well. I did manage to pop a tire yesterday with Cody, Sergio and my nurse in the car. So we had to wait for a tow truck to come. Cody found it cool, Sergio was annoyed and my nurse had to pee. What a sight we were. LOL
Peter leaves tomorrow for Penn State with a bunch of friends. The kids and I are going to watch the game and try to find him on the side lines. . . we never do, but it’s fun to try.
Til next time,
Renee
Friday, October 10, 2008 9:46 AM CDT
Well, we went to the cardiologist. . . did I ever tell you how much I love our new cardiologist, Dr. Atallah?. . . well, I do. LOL He made me feel better and spent almost half an hour with us, when we didn’t even have an appointment. We did an EKG to be sure Tray was still in normal rhythm. He was. Then he chatted we us and checked he Tray out. I expressed my concerns, he listened. He felt that NY was optimistic that with medication adjustments, we can pull Tray’s numbers into a safer range. He also stated that he didn’t feel the same level of confidence, but assured me that he would work hard to try and we’ll just take it one day at a time. We had levels drawn last night at the ER on is anti-arrythmia medication and we will wait to see what they are. If they are low, we’ll increase his med. If they are ok, then we’ll just wait and watch for any signs of problems. He doesn’t want to use another anti-arrythmia called Amiodirone because then they won’t have any emergency meds left to use.
I felt better taking the “wait and see” approach but, still harbor anger at the doctor in NYC who, I feel, set me up for a false sense of security. She didn’t explain the numbers to me and just told me they weren’t bad and he was doing better. After some explanations of the meanings behind the numbers and understanding just how hard Tray’s heart is working, I was irritated and upset that she lead me to believe that we’re out of danger and all is relatively well for a while. I do have to trust that we’re in the right hands and that Dr. Atallah and his collegues will guide us through this. But, with that said, I’m now just of the mind set that we ARE going to go to transplant sooner than later but still on Trayvon’s time, not the list’s time. Does that make sense? LOL
We’ll Peter and I are going out on Date Night for the first time in over 5 months. Nettie and Joshua are at Casey’s Place for the weekend, Marriela had her melatonine and is out cold on the couch, Sergio is happy and bouncing in his excersaucer, Cody is hanging on for some hard boiled eggs and Trayvon is going to finish watching Iron Man that he missed due to his unexpected ER trip. Think we’re going to do some dinner and Christmas shopping.
Take Care and God Bless,
Renee
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Wow, how quickly life can change again and again. Tray has thrown us another curve ball. Last night at 8:45 he stated the infamous line "My heart hurts." Sure enough, his sats were down and his heart was racing and skipping beats. Off to the ER. They had an ICU bed already for him and they were waiting for him when we arrived, since the doctor knows all to well, we don't have any room for "waiting" when it comes to the arrythmia issue. However, just after taking an EKG and hooking him up to all the monitors, he converted all by himself back to normal sinus rhythm. Can you say "phew" nice and loud. We drew some labs, monitored him and they gave him an extra dose of his anti-arrythmia medication called Rhythmol. Then we came home about 12:30am.
The real downer was my conversation with the on-call cardiologist. He was shocked that NYC had made the decision not to list him based upon his cath lab numbers. Tray had a "wedge pressure" of 16 (I actually have no idea what this number means) and normal for his physiology should be no higher than 6. He also said that the pressures in the "Fontan" which is the tunnel built by the surgeon to carry blood to Trayvon's lungs, were in the 20's and anything over 16 is barely tolerable let alone compatible with long term success of the Fontan surgery. In other words, he is not in a good place despite how he is looking and feeling on the outside according to our local doctors.
I can't begin to imagine why there is such a difference in opinion and interpretation of the results of his tests. Why does one hospital tell us that he's doing so much better and no need to list any time soon (unless of course, he has another arrythmia episode that does more heart damage - sigh) and Syracuse, who says that he should not only be listed, but at a high level.
We see Dr. Atallah, our cardiologist, today and I am anxious to hear what he has to say. I don't know anymore whether to go with the docs here who will be the ones who have to follow and treat us for all of his ongoing complications, or NYC who has more transplant experience. But the reality is, if NYC doesn't feel he should be listed, then he won't, no matter what Syracuse thinks. Now we have to discuss the other option of a different hospital, but NY presbyterian is the top facility and I would hate to go else where. However, if the docs here dont' have any additional support measures to use to help Trayvon's heart then how does that translate into "doesn't need a transplant now, we can manage him with medications". It's all so confusing. My son's life is in the hands of too many people and too many opinions, yet there is no way to avoid this system and therefore, I feel in the dark all the time.
I'll update more after our appointment today.
Take Care,
Renee
Wednesday, October 8, 2008 2:15 PM CDT
God is amazingly good to us!!!
Trayvon's heart function has improved a great deal just since September and the doctor now feels that we can "postpone" listing him for transplant!! She has made some medication adjustments to try and alleviate some of the added work his heart has to do. He will now take 120mg of Lasix daily instead of 80mg and we're increasing his Enalapril to 7.5mg with the goal of going to 10mg twice daily. Enalapril however, was the drug that sent him into kidney failure a few years ago, so we have to monitor his lab work very closely. He will continue to use his oxygen at night and we are now going to add C-PAP as well to further reduce the hearts work load. With the changes, it is hoped that we can allow his heart to continue to improve and heal from the events in July/August and can postpone the need for transplant. The reality is, he will need a new heart, but, not now. That's awesome news and we'll take it for exactly what it is, our little miracle.
Unfortunately, we can't get transportation until 7:00pm so we won't be home until midnight or so, but hey, we don't have to come back anytime soon, so I can hang out for a few more hours! LOL
Apparently the rest of the kids are doing well and all is calm on the home front. I miss my family and can't wait to see them all again.
I need to say thank you to sooooo many people for their support in this crazy journey we've been on the past few months! I pray that we're getting close to the end of this ride 'cause I'm ready to get off.
Take Care and God Bless!!!
Renee
Tuesday, October 7, 2008 5:49 PM CDT
Hi everyone,
Well, Tray is doing well and in his room right now. He is sore and irritable and his throat, neck and legs hurt, but over all, he's doing great. I only spoke with the transplant doctor quickly while he was still in the cath, but she told me his pressures were very high for his type of cardiac physiology (high is not good). She wanted them to put in the broviac (the permanent IV) so we can get some good labwork and give him some higher doses of diuretics. She didn't have all of the numbers so I have to wait until tomorrow morning to get the full picture. His line is right over his left collar bone and is nice and short. He's watching a movie and waiting for me to bring back some Wendy's (frosty for him, salad for me LOL). Gotta run, update more when I know more.
Love Renee
Friday, October 3, 2008 4:12 PM CDT
Hi everyone,
It’s temporarily peaceful right now, as Sergio and Cody are napping and Marriela went with daddy to drop off a friend, while Tray and Joshua are upstairs playing video games and Nettie is still at Casey’s Place.
It’s been another busy week. . . nothing new. Sergio went to ENT today for his post op appointment and to have his vocal cords looked at with a small camera. We found that his vocal cords are, in fact working fantastic and the Dr. felt that his vocal quality was good, though limited to only one or two sounds. He feels that it may be a developmental issue and possibly due to his brain bleeds in the area of speech holding him back from speaking at this time. Maybe with time, this area will develop more and therefore he’ll be able to speak. But, until then, we have to work with another method to allow him to communicate with us. He’ll also have a Barium swallow to see if he has any issues managing food and liquids. Once we have that information, we’ll be able to move forward to introducing actual eating to him. Very cool.
Cody and I continue to have this respiratory crud, it’s been 3 weeks for both of us now. I took Cody to the pediatrician on Monday and he was found to just have an asthma flare due to a viral infection. But on Wednesday he was burning up. I tried to give him one more day to clear it, but by Thursday morning, he was having trouble with the fever coming down even with meds. So I took him to the Urgent care (see story below) where it was discovered via x-ray that he has a large pneumonia on his right side. So he’s on antibiotics which worked wonders and he’s been fever free since his first dose yesterday! I also started an antibiotic yesterday and feel much better already. Who knew it was bacterial, I just thought I had a long lasting virus. Cody has also continued to complain of ear pain and was very vocal about his pain in front of Dr. Mortelliti when we were there for Sergio. He took him and looked at his ear under the microscope and found some fluid behind the ear drum. It’s also very protracted (pulled backwards, it causes a lot of pressure and discomfort like when a plane descends to fast). He now wants to see him back in 6-8 weeks to see if he needs another tube in that ear. So much for our discharge from ENT! LOL
We are now changing pediatricians, just one more thing to have to do to complicate our lives. I needed the doctor to sign a piece of paper for Sergio’s nurses to continue to work here. For some reason, she refused. No explanation, no call, nothing, just a message from the secretary to say she says “no”. Without this letter, I would have to fire my current nurses and move to only nurses that work with an agency but the agency’s already said they don’t have any nurses to send. This was just one of many things, she also refused to discuss Cody’s weight at his sick visit and insisted that I had to make a well child appointment for that conversation. She also seems “put out” when I call or bring in one of the kids so I decided I just had to find a new practice. I will call on Monday to see if the charts are there and when we can begin to schedule appointments for the kids. But, we had already sent the release of medical records request, so I didn’t feel right taking Cody up there right after I had just done that, thus the reason we went to Urgent care.
Tray goes on Tuesday for his big cath. I suspect we’ll be listed by the end of the week or early next week. Tomorrow Joshua goes for his IVIG all day and Nettie has a follow-up with her eye surgeon tomorrow as well. I pray we’ll be home on Wednesday but, I have prepared for a stay until Friday as a precaution. I need to do some arrangements for child care but have most of the rest of the stuff under control.
Marriela is doing very well on her new medication dose and with effort on my part to keep her active and engaged in activities after school.
Nettie is doing wonderful and enjoying school way more than she thought she would. LOL
Well, that’s it for now.
Take Care and God Bless,
Renee
Friday, September 26, 2008 8:07 AM CDT
Update:
We heard from NYC and the doctors there all agree that Trayvon will have a broviac/hickman placed on the 7th following his cath. He will stay asleep and they will take him down to interventional radiology where he’ll have the line placed. I was worried about how Tray would react to such news, so I pulled out Joshua’s old scrapbook where there are lots of photos with is lines showing (Joshua, like Cody, hated to wear clothes as a toddler. His little lines hung out all over the place, yet we never lost the line in 2 years!). He didn’t seem upset at all and in fact, seemed very pleased with the idea of never having to have an IV again! LOL So I think I sold it well.
I can't believe I'm about to have a third child with a central line. Nettie had a total of 7 in her younger years and Joshua had his double lumen for 2 years. And has had 2 ports, and still uses a port now. Now Trayvon. I get rid of a g-tube and gain a central line. Only in our house. LOL
The transplant coordinator also told me that they’ll let us come up here and start his milirinone instead of doing it down there, to keep our family together. I was so happy to hear that they are thinking of our family dynamics and are willing to work with us.
Cody visited the ENT on Friday and we learned that he now NO LONGER needs to see ENT! His ears look great. They do have some negative pressure (like when you’re on a plane and your ears are plugged) but that’s most likely contributed to the respiratory crud (see entry below) that we’re all dealing with. One less kid at one less doctor, how cool is that! LOL
Well, that’s it for today.
Take Care and God Bless,
Renee
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Hi everyone!
We have a date, we have some results, we have some medication changes, we have some upper respiratory crud (that’s just awful – I can vouch for it) and we have school pictures.
The Date: October 7, 2008. Trayvon is scheduled for his cardiac cath in NYC. They are planning on putting in a central line of some sort on the same day, but we’re only going to have to stay over a night or two. We’re then going to come back to Syracuse and we’ll try the milrinone here as an inpatient rather than in NY. Sounds great to me. The numbers in the cath will tell us a lot and then we’ll have a much better idea of our listing status and his overall heart function.
The Results: Joshua’s endoscopy results show reflux damage. I have no idea how that’s possible since reflux has never been an issue for him. But hey, who am I to argue with concrete evidence in the form of biopsies. So we start Nexium today. His colonoscopy results were all normal. Now this part baffled me, since after the the scope he came out and told us how much his colon looked like that of a newborn baby with a severe milk allergy and now we have to determine what he was allergic too. So were do we stand now? No idea. Gotta love the docs here in Syracuse. Give us a dose of nexium and call them if there’s any more problems. Sigh. So I guess we’ll just have to see if all of this is, in fact, a reflux issue (which we know it’s not, since reflux dosen’t cause diarrhea or high eosinophil counts or elevated SED rates, but I’m only a mom, not a doctor).
The Medication Changes: Marriela is now getting her meds in the morning and at night at a higher dose. The logic is to try and push her past the 2:00pm bewitching hour when my sweet little angel turns into the antichrist himself. It’s only been two days, but two GREAT days so I’ll take what I can get. LOL
The Respiratory Crud: First Peter, then Sergio, then Cody, then me and now Marriela. It hits hard and fast and causes all kinds of fun things to come from ones lungs. It results in the need for many nebulizer treatments (yep, even me or I can’t catch my own breath!) and makes sleeping in a pleasant, reclined position, a dream of the past. But, we’re all moving past it and we should be shoving out the door to someone elses house in the near future.
School Pictures: Marriela and Trayvon’s school sent the form yesterday and the pictures are today. I’ve tried to pay for them on line, but the “job code” is not matching what the computer wants and Marriela’s hair is scary. Sigh. I should just forgo them but I’ve never NOT gotten school pictures taken so we’re going to make it happen!
Everyone is doing well. Nettie had her Self Determination meeting last night and we accomplished a lot. We should be good to for submitting her plan by January. Joshua is holding his own and no new things happening with him. Tray is doing well for the most part, no need for oxygen in the past week and he actually seems to have a bit more energy! Sergio, well, he’s finding the night time is a great time to cry all night. Last night he went for an overnight respite with his nurse where he proved to her, just why we so badly need night nursing. She is exhausted, and she’s much younger than me LOL. Cody is doing well other than this terrible asthma/virus crud going on. He went to school yesterday and loved it. Marriela is doing well also and looking forward to seeing Grandpa Curkendall this weekend!
I guess that's it for now.
Take Care and God Bless,
Renee
Sunday, September 21, 2008 6:34 PM CDT
Hi everyone!
First and foremost, my “baby” is now a full fledge teenager!! Joshua turned 13 today. Unfortunately he spent the day chugging Miralax, vomiting and sitting in the bathroom all day in preparation for tomorrow’s procedures. We better find some answers to have made this whole process worth it! But, he had his birthday yesterday instead and I think he was very happy with his gifts. He spent much of his day playing the new PS2 games he got with Trayvon and Daddy. This helped pass the day a little better. I was glad we didn’t send him to church, because apparently he wasn’t able to drink the 64 oz of Gatorade and vomited all over his father who was lying the floor next to the couch. YUCK!
Well, Sergio did amazingly, blessedly well with his surgery. Even considering they did remove his tonsils and adnoids!! He is now the proud owner of new ear tubes, and has joined the ranks of those in our house without their tonsils and adnoids. Only Cody and Annette continue to possess all of their God given organs. LOL He did so well, he was actually discharged at 9:00 the next morning. However, it was also Joshua’s IVIG day so he and I just went downstairs, took our stuff to the car, changed his O2 tank and then enjoyed a cup of coffee while we waited for Daddy to drop off Joshua. Sergio’s nurse also came along so that she could take Sergio and care for him if he got cranky while I stayed with Joshua during his infusion. It all worked out great and we were out of there earlier than we have been in a long time!!
Tray continues to do very well. He has actually seemed more energetic to me lately and his sats are running a tad higher the past 2 days. Who knows, maybe we’re seeing our miracle in the working here.
Nettie is doing well and met her new SU students today. She and Peter and I really liked them and they had some really fun ideas to do with Nettie. I love this program and so does Annette. It gets her out of the house with age-appropriate girls and even teaches her a few things!
Marriela is now the proud owner of her 5th backpack of the school year. We had yet to get one that met ALL of her criteria and yesterday, by the grace of God, we did so in the Children’s Place. She found a backpack (on sale – even better) that had a strap that clips around the FRONT of her waist! Oh my, she was in Heaven and I think we’re good to go on backpacks for a bit. LOL
Cody is also great and this week should be able to attend his first full week of preschool (Tues, Thurs, Fri.). He loves class and this is so good for him, just need to figure out how to make it work for the whole year and not just one week at a time.
We had been considering enrolling Joshua in a new trial for a new drug that addresses his specific seizures. However, the paperwork came in the mail for me to review and I was terribly disappointed to see that it’s a double-blind, placebo controlled study. Therefore, he may or may not get the med and may end up being on a placebo. It requires many trips to Rochester and blood work almost every month (fasting blood work). I really don’t think it’s worth it to miss that much school and not even know if you’re getting the drug! So we’ll continue to look for another option. It’s looking like surgery or a radical diet called the Ketogenic Diet may be our only remaining options. Sigh.
And then there is the overwhelming sadness that takes over my very ability to breath when I realize (at any time of the day or night) that I’ll never see my dad again in my lifetime. As I was putting the candles on Joshua’s cake I was overtaking by the realization he wasn’t going to be there for this birthday. I felt the same at Cody’s party, but we had just had the service and the next day was Tray’s trip to NY so everything was just so chaotic I hadn’t actually processed the enormity of the concept. I miss him terribly. He was such a great grandpa and wonderful father. I only hope he knew how much he was loved by us all. We miss you Dad!
Take Care and God Bless,
Renee
Wednesday, September 17, 2008 1:03 PM CDT
Hi everyone!
Well, we’re moving along here.
Sergio has developed a cold, but the pediatrician feels that it’s not enough to keep him from his surgery and procedures tomorrow, so we’re still going to take him in and hope the anesthesiologist will give him the green light. He’ll have an upper airway bronchoscopy to assess his vocal cords and trachea to see why he makes no sounds and why he chokes on almost all foods we give him. He’ll also get some ear tubes, possibly have his tonsils removed, is getting a full hearing evaluation and will have an eye mold made to form his prosthetic contact for his blind eye. It’s a lot of stuff and he’ll be under for a while which is why I was a bit worried about him going through with it. But the doctor made a good point that if we don’t do it now, then we don’t do it at all until spring, since RSV and Flu season will be here and he can’t be inpatient unless absolutely necessary during the fall and winter seasons.
Joshua continues to have drop seizures and had another one in the bathroom this morning. This seems to be a common time and area for him to have one, as he’s had one in the bathroom 7 times this month alone. So no more being alone in the bathroom. He’s going out to Rochester on the 30th to do his study workup to begin his medication the second week of October. Very exciting!
Tray is holding his own. Mornings are getting harder and harder, with lots of coughing, some vomiting and high heart rates and low sats. But, after getting up and around a bit, he seems to recover nicely and hasn’t missed any school at all except for his doctor appointments! Haven’t heard from NYC yet. I’m going to call in a few moments though to see if we got a cath date yet so I can begin to finally make some preparations for our departure!
Marriela is doing well. Her medication works like a charm until the late afternoon and we’re just trying to learn to deal with the behaviors rather than increase the meds again. The dose in the evening is very sedating and I don’t want her to awake groggy and irritable, because, right not, she wakes happy as a clam. LOL
Annette is doing her best to process all that is going on with Tray and how it will affect her and how it will keep me away from home. She is very, very anxious about me not being here and asks repeatedly about how long I’ll be gone ect. I wish I had answers for her, but I don’t.
Cody is great! He had a fantastic Spiderman birthday party and was completely blown away by his Spiderman cake. It was so funny to sit and watch him stare and drool over his cake! He loved his costume and wears it daily.
Well, that’s it for now.
Take care and God Bless,
Renee
Sunday, September 14, 2008 7:43 AM CDT
GO PENN STATE!!!!!
Well, Joshua, Trayvon, Peter and I enjoyed ourselves at the Penn State vs. Syracuse game yesterday. 20 years ago, Peter played in the last game these two teams played together and they LOST! Way to go Peter. LOL Yesterday was a payback and the final score. . . PSU 55 Syracuse 13.
We were very worried about Tray and all of the walking and such, but other than almost passing out as he walked up the 8th mile of stairs to our seats, he did fantastic and never even needed any oxygen! Joshua did have a nice size seizure and scared the poor man behind him but recovered uneventfully. The gentleman that alerted us to his seizure however, got up and moved, I think he was more traumatized than Joshua was by far. LOL
Nettie had gone to the library in the morning and picked out about a dozen DVD’s to watch. She came home, curled up in her bed in her pj’s and watched videos all day. At first she was going to go to my sister-in-laws house, but decided she wanted to try staying alone. She did great! I think she liked the new found trust that we have for her to stay (provided she doesn’t make anything to eat, doesn’t go outside and carries both the house and her cell phone with her at ALL times) refreshing.
Cody and Marriela had a great time at my friend, Laura’s house. I didn’t get there until 8:30 (and that was leaving the game early!) and it was well past their bedtime. I don’t think I made it more than 10 feet out of the driveway and both kids were sound asleep. Thank you soooooo much Laura!
Then I went to get Sergio from his nurse’s house. He had a great time as usual and we knew he was in good hands. He was asleep just a few moments after getting into bed. He had nursing last night and so I was in bed and asleep by 11:00 pm.
That is what I call a good day.
Take Care and God Bless,
Renee
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Hi everyone,
Well we got some answers, but their still vague in nature. I had a lovely conversation with our local cardiologist and he is all for allowing Tray to wait at home on the IV medication. He is happy to monitor and care for him while he’s here. NYC is happy to allow Trayvon to do this as well, if the results of the cardiac cath support this plan. Dr. A from NYC also threw out a possible scenario of bringing him to NYC for a week, doing the cath and then giving him a Melironone “spa” to rest his heart for a bit and see if that helps it work better. If this works, then we can come home and wait without the IV drip or central line, but will be listed as status 2 meaning “home and no meds”. It’s hard to wish your child sicker, but to move up on the list, this is exactly what you have to do. They did say that there is still the chance that the call will come, even at status 2 since he is only one of a very few on the east coast with an O blood type in his size. So it may not make much of a difference where we wait – hospital vs. home vs. with or without IV meds. If a heart comes along in his blood type, is not part of a lung donation and in his size, he’s probably going to be the only match on the entire transplant waiting list so I’m all for waiting at home with no meds.
The cardiac cath is going to be the tell tale answer to what the final plans are, and of course Trayvon and his heart have to cooperate as well. Dr. Atallah and I were laughing at the idea of telling Tray he would have to “live” in the hospital until he gets his new heart after seeing what he was like with just a one week stay under his belt. He was less than cooperative and very, very homesick! He is not a good one to be cooped up in a hospital.
So, I have answers, but no answers. Lots of possibilities, but again, we need to wait for another test to give us the answers. And I assure you. . . the test will result in new plans and new scenerios, and new worries. It’s the nature of medicine. You hurry up and wait for everything, thinking you’re going to have the answers you need to only be told that there is still some questions that aren’t answered and the plans will change on you again.
But, I have talked to the doctors and that was all I had hoped for today. Now I await the date of the Catheterization and will be calling on Monday afternoon if they haven’t called me by then.
Joshua is going to be enrolled in a new study for a drug to treat his drop seizures. We go out to Rochester for his lab work, another EEG and another test I wasn’t familiar with. He can start the second week of October and hopefully he’ll have a wonderful response. I have talked with several parents with kids on this med and they had great success stories to share. Here’s praying we’re going to be one of those success stories as well.
The rest are doing well. Sergio is all cleared for his surgery. He had a visit to his pulmonologist and ENT and other than another ear infection, is doing great. We’re also impressed with his continued achievements despite the chaos all around him! LOL
Marriela’s med is working better and better each day since raising the dose. She’s enjoying school and no major issues have arisen thus far.
Nettie is actually enjoying school despite thinking she wouldn’t. She had her stitches removed last week and feels much better. Her belly aches now vs. hurts. She’s doing a dose of motrin each day, but this is way better than where she was even a week ago.
Cody is doing great and next week starts his three day a week preschool program. Just gotta work out the pick up and drop off since I’m tied up with someone at the hospital so much of the time. But, we’ll work it out.
Well, that’s it for now.
Take Care and God Bless,
Renee
Thursday, September 11, 2008 7:17 AM CDT
Hi everyone,
Well, our lives are about to take another abrupt turn. Tray is definately going to be listed for a heart transplant. In addition to that information, we learned that his heart function is severely decreased, thus all of his symptoms. The thought is now to either admit him here, in Syracuse, change his current anti-arrythmia medication over to another (which has to be done IV and then switched to oral once his levels are high enough) and give him a Milirone challenge. Milirone is a powerful IV medication that causes the heart to contract better making it more capable of pushing the blood up and out into the lungs so it can be oxygenated better. If he has a successful challenge, that is, he shows significant improvement, then he will be admitted and remain admitted until he gets his new heart. If it is not successful, then we may have to be admitted in NYC until he gets his new heart. He is definately going down to NYC again in the next few weeks to a cardiac catheterization. If we don't do the Milirone challange here in Syracuse, then we will definately do it down there. If he ends up on the Milirone he will get a central line placed at the time of the catheterization.
I am a bit overwhelmed by all of this. I had thought we were going for the "he can or can't be transplanted" eval, not the "we're listing him ASAP and may be admitted for the next 3 - 6 months to a hospital" speel. Peter and I continue to say "Bring it on. . . " we want what's best for our kids, but sometimes, you wonder how much more can you take. I know we'll be fine, we always are.
Today is the day we will here from Dr. Atallah here in Syracuse and NYC regarding the plan of action and when he will be admitted for, at minimum the switching over from the one med to another. We should also have our cath date.
I am praying and would appreciate your prayes for the following:
1. That we are able to stay home with his medication support (I hope to convince the doctors that we have lots of central line care experience and only live 10 minutes from the PICU).
2. If we do have to be admitted for a long term until a new heart is available that we can do so here in Syracuse to try and keep our family together as long as possible before the actual transplant takes place.
3. That Trayvon is able to stay stable and not continue to deteriorate as he currently is. That the medication changes and additions will improve his quality of life so he can enjoy his life prior to being transplanted.
4. For the family that will ultimately give our son the amazing, devestating and heartwrenching gift of life. I can not begin to imagine the greif of losing a child in such a manner as to be able to agree to donate their organs. I've know lots of children who have gone to meet their maker, but all were due to chronic, severe illness. To donate, parents are faced with a rapid and life taking event. May God grant them comfort in their time of decision making.
5. For the other children who are all dealing with so many life changing events. Joshua who still needs to be diagnosed for his stomach issues and will be placed on a study in the near future for a new medication to address his drop seizures. For Marriela as we continue to work on her meds to help her cope with the constant state of fluxi n our house. For Cody who has seen so many new faces recently as amazing people step in to help me care for the kids in my absence so Peter can continue working until he qualifies for the Family Medical Leave act. For Sergio who will undergo a big surgical day on Thursday for his ear tubes, tonsillectomy, bronchoscopy, hearing test, creation of a mold for his eye prosthetic and possible adnoid removal. And for Trayvon who is now faced with an overwhelming new set of medical challenges that will test the resolve of all involved.
Thank you and I'll keep you updated on our adventures as I learn more in the coming days.
Love,
Renee
Friday, September 5, 2008 6:53 PM CDT
Services are as follows:
Calling hours are Sunday from 1 - 3 at New Comer Funeral home at 705 N. Main Street in North Syracuse.
A memorial service will follow at our chuch, Liverpool Community Church at 4:00pm. The church is at 800 Fourth Street (right off of the thruway or off of 370W) and food and fellowship will follow the service.
____________________________________________________________
Sometime in the early morning hours of September 3rd this world lost an incredible man. My Dad, Paul Perkins, apparently had a severe drop in his sugar in his apartment where Peter found him this evening around 8:30 pm. The Yankee Radio station was on and he looked peaceful.
I am beyond crushed. This man is the apple of Marriela’s eye. He was an incredible grandfather, father and father-in-law. No one disliked him and though he was quite and unassuming, you couldn’t help but be amazed at his energy and love for his grandkids.
I can’t begin to tell you how much this adds to all of the recent pain and confusion in our lives. I can’t understand at all how so many things can go wrong all at the same time, and then something even bigger and badder comes along. My dad dropped everything every time one of the kids was sick to come baby sit, meet a bus, attend a school function, etc.. He was my old faithful and so dearly loved by all of my kids. Joshua would sit for hours and go over all of his 2000+ sports cards with him, and my dad wouldn’t bat an eyelash. Marriela would take him for long walks and talk him into an ice cream every time. Cody would climb on his head, neck and play “the flush game” until my dad could barely move he was so tired. Tray would tell him all the ins and outs of his computer games and my dad would sit patiently and listen to every word. Nettie even enjoyed chatting with Grandpa and he had a special place in his heart for her even though they never really got close until later in life. He was a presence at every birthday, celebration and cookout we had. He will be so very, very missed.
I am not telling the kids until they get home from their first day of school tomorrow. Peter and I will go and make the arrangements the best we can. Somehow, I have to fit a funeral in for my father, take Joshua for his IVIG, get Nettie to the surgeon to take out the stitch that is causing her so much pain, and then take my son to NYC to be listed for a heart transplant. I am beyond exhausted now. Please pray for my family.
Love,
Renee
Monday, September 1, 2008 10:39 PM CDT
Update: 9-2-08 am
Joshua awoke fine, ate a big bowl of cereal and then started yelling how much his stomach was hurting. He moaned and groaned for about an hour and then he started with the diarrhea. He was shaking like a leaf and sat on the toilet for over a half hour crying in pain. I was beside myself with frustration and sadness. These episodes don’t have any rhyme or reason and they are just so hard on him. But after 4 hours of hard sleep he awoke again happy and pain free Thank God. He then had a big seizure outside but luckily was sitting and Tray was with him to alert me. He didn’t get his morning meds due to the severe stomach pain so I’m sure that was the cause of the seizure.
I have ¾ of Nettie’s braids done. She attended her first Weight Watchers meeting and really liked it. Her incision, though still bothering her, is hurting less and less. Nettie only had 2 doses of 600mg of Motrin all day.
I cleaned my medication cabinet (that was a big job! LOL)
I corrected, printed and faxed off all the necessary paperwork for Sergio’s and Joshua’s nursing.
I found out that the paperwork was never filed by the therapist for Marriela’s and Joshua’s beds so now I have to go and fight Medicaid to get them paid for.
Sergio has been in a sad mood all day. I’m pretty sure it’s his ears. I will give it through the night to see if we need an appointment tomorrow.
Tray actually had a good day. He played outside for a bit without consequence and then had a great time tonight with Joshua upstairs watching a movie. His sats were low this morning (84) but he didn’t seem in any distress so I just tried to ignore the number. :-$
I love the color of my front door now (hated the old color).
Managed to order all of the meds that were due. Even went so far as to organize the meds according to order date on the computer tonight! Oh where is my sense of fun.
That’s it for now!
Love,
Renee
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Hi everyone,
School is only 3 days away!! I’m more excited than the kids, trust me LOL.
Things continue to be interesting here, as usual.
Yesterday was a trip to the ER with Trayvon. He came in from outside and laid down on the couch. I heard him making strange noises and asked him what was the matter and he said he couldn’t breathe. I put on the SAT monitor and he was only 80. My nurse was here (as well as a new one we were interviewing for Sergio’s night position – hope we didn’t scare her away!) and Peter who worked hard to calm Tray and let him know we were right there. He then vomited for the second time that day and said he could breathe better. But, his SATs were still only 80 – 82 so I put him on some oxygen and they did come up a bit. I called his cardiologist who said to bring him and to get checked out.
The reality is, Tray is in heart failure and no one knows why. We need to give him higher doses of diuretics, but we after 3 IV attempts and 2 blood draws in which the blood hemolyzed, making the level of potassium impossible to read, we couldn’t. The doctor finally conceded that we may need to look at a more reliable form of access like a central line. Tomorrow Tray’s case is being presented to the cath/surg team to see if there is anything we’re missing. I hope he can be put on the schedule BEFORE we go to NYC, as the information could really help them formulate an opinion and game plan before we leave there. But the odds are slim to none that this will happen. Dr. Attallah feels strongly that he will be in need of a new heart, but whether that need is an immediate one or one that we can medically manage for a period of time is yet to be determined.
It’s all surreal sometimes when you think about it too long. I have this overwhelming feeling to get things in order. I did Marriela’s hair today, got half of Nettie’s finished (6 hours and only half finished, oye!) and painted my front and side doors. This week I’ll steam clean all of my rugs and go through all of the summer and winter clothes to determine what stays and what goes. Peter has been practicing with Sergio’s meds and we’re working hard to get his nursing set up ASAP so we are covered should Tray be admitted again. This is how we use to be with Nettie, but it was only 2 children at that time, so getting things “in order” were very simple. Formula for Joshua and be sure there were diapers in the house. But now, there is so much more to work on. . . meds, clothes, school needs, food, cleaning, hair, animals, etc, etc. So I’ve been spending time the past few days working on a little at a time so we’re ready should Tray have another event that lands him inpatient.
Let’s see, Tray and I also did a sleep study on Saturday night out in Rochester. Actually, he did the sleep study, I just watched tv and then feel asleep in a bed with no one to get up for, no one to share blankets with, no couch to roll off of, it was awesome. LOL
Nettie is still sore from her surgery. She is getting frustrated by the pain since she thought this would be virtually pain free. Now that I’ve seen the wound I understand why she is still in so much pain. To full close over the entire hole where her tube was, the surgeon had to “pull” the muscle, fat and skin together over it and sew it together so it would result in a nice smooth straight line. It’s about 3.5 inches long but looks wonderful. She has noticed though how nice it is to not have dressings, gauze, and clothing changes due to all of the leaking. I think a few more days and she’ll forget all about it.
Cody and Marriela are doing well. Marriela is very excited about school. Cody is, well, Cody. He has fun everyday no matter what or where we are.
Joshua is doing well. No more drop seizures since his last one on Thursday after Nettie got home from the hospital. Again, our poor nurse heard a thud and found Joshua on the floor in the bathroom. Thank God she was there to find him. She’s got to be crazy to still want to work here, she spends as much time caring for the other kids as she does the child who has nursing! LOL But, overall, Joshua is doing well.
Sergio is doing great still. He spent several wonderful minutes practicing sitting up in his bed all by himself!!! Peter pushed him over gently to begin his feeding and Sergio shocked us by sitting back up! He loved the cheering Peter and I were doing that he knocked himself down and got back up over and over! Yeah Sergio!
Well, that’s it for now. I’ll update more as I hear about the results of the cath/surg conference for Tray. Till then,
Take Care and God Bless,
Renee
Thursday, August 28, 2008 8:00 PM CDT
Hello Everyone!
I would like to introduce to the world, our daughter, Annette, who is now feeding tube free for the first time since she was born!!!
She had her surgery today and all is closed, and there are NO tubes remaining anywhere on her body. I do have to say though, and she eagerly agrees, that this was FAR more painful than we had anticipated. She was in agony until they loaded her up with some fentynal, morphine and toradol. She finally started feeling their effects about 2 hours later and literally started to breath! She said it felt like a dinosaur had been sitting on her stomach. Funny girl. We came home after getting a day’s worth of IV fluids because she wasn’t allowed to have anything by mouth until after 5 pm. She can have only water until tomorrow and then she can eat normal. She is on her vicoden and having some interesting conversations with me LOL. I’m sure she’ll feel it was all worth it tomorrow when we don’t have to change her shirt first thing due to all of the leaking she had all night!! Way to go Nettie!!!
Yesterday, I got an unexpected phone call from Joshua’s endocrinologist stating that his 24 hour urine collection was very, very concentrated and the creatinine was very high. He ordered stat blood work for me to go get immediately. So, off I go AGAIN, down to the hospital with the kids and we wait for Joshua to get his blood test. I was warned that this could be a sign of kidney failure, metabolic disease or something else I didn’t bother listening too by this point. I am happy to report that the labs showed nothing alarming and now we’re just going to re-do that lovely 24 hour urine collection that took me 3 months to finally get around to in the first place. LOL So much fun, so little time.
Marriela is doing very well on her new med until 3:00pm. You can tell almost instantly when the med is done. So I will have to call and see if we can get a twice a day dosing to prevent this issue during her school day. Otherwise, she is doing fantastic!
Cody, doing great! He ran into a tree branch the other night in the back yard and has a pretty scratch across his face and nose, but I’m shocked he hasn’t broken a bone yet the way he plays, so I’ll take a scratch any day.
Sergio, is now off of the Pediapred!! He has been switched to Cortisol now because his lab work showed that his adrenal glands are not working at all, but something that tells you if the brain is capable of turning on the adrenal glands was good so that means the adrenal glands just need time to turn on, but there is no reason to suspect that they won’t. In the mean time, we’re going to replace his own natural steroid function with the twice a day Cortisol vs. the once a day synthetic pediapred, which is too long lasting and strong. He is also making some very, very nice progress in the area of physical therapy and is almost ready to go from lying to sitting independently. He’s also rocking on all fours now, so it’s only a matter of time before he actually crawls on his knees!! YEAH Sergio!
And Trayvon. We had our meeting with the cardiologist and I shared my concerns. He felt that a cardiac cath is an appropriate next step in light of the symptoms he is having. There are several possibilities to explain his breathing, vomiting and low sats. 1. His pulmonary hypertension is progressing. 2. He has grown collaterals (small vessels that grow off of the larger vessels in the lungs, which divert blood away from it’s correct destination). 3. His heart function has decreased for whatever reason. 4. His heart can’t handle the leak in his valve and is stressed from it. Reasons 2 and 4 can be fixed surgically or in the cath lab so that’s good. Reasons 1 and 3 make things more complicated and we’ll have to go back to the drawing board.
He’s meeting with the cath/surgical conference team this week and presenting Trayvon’s case. He’s hoping they will come up with a plan of action and discuss surgical options and a relatively soon cath date is available. Till then, Trayvon has been withdrawn from all physical activity. That means no gym, or recess (well, he can't participate in any group game involving running or jumping, etc.). He's very sad about this so we are looking forward to our trip to NYC to see if they have any suggestions as well.
I need to mention some very special people here, as they have helped me out tremendously today. I was really wondering what to do about child care because Peter took off so much time for Trayvon’s issues, his job is in jeopardy. I reached out to my friend Laura, who in just a matter of minutes called our friend Andrea and they had the whole day worked out to care for my kids while I was with Nettie.
On another occasion, I had mentioned that I was struggling with all of the doctor appointments because I had to keep taking all of the kids all over the place, and within minutes I had 3 calls asking when to be there. In one week I had 4 amazing women come and care for my children as I took various other children to their appointments. I would just like to be home sometime to actually enjoy visiting with my friends when there here! LOL
I am also honored to call a group of women, most of whom have or had a child treated for cancer, but some have a child with heart defects, some with metabolic disorders, others with other serious and life threatening issues, my friends. These moms reach out to any and all other families facing a crisis without a single second thought.
I hope to one day be able to reach out and offer that hand of assistance to someone who needs it, as much as the women in my life have offered me. Between the friendships, the meals, the child care and the shoulders to cry on, I am truly blessed.
Thank you all!!
Renee
Sunday, August 24, 2008 11:29 PM CDT
In general, I don’t consider myself an anxious person. In fact, I’m quite laid back about most things, maybe to a fault. But lately, all I feel is anxiety. Has anything significant changed with the kids? No. Can I put my finger on it? No. But, it’s a cruddy feeling that I have no use for and little experience with.
I think I have suffered a major confidence shaker. Up until just a few weeks ago, Peter and I have always handled our life crisis’ in a the same, “just do what ya gotta do to get through it” manner. We’re use to hospitals, doctors, new diagnosis’, doctors pessimistic outlooks, uneducated medical personnel, and the paperwork that it takes to pull it all together on the fly. I have an “in case” bag packed all the time, “in case” we need to go to the ER, “in case” we get admitted. Usually, I feel this bag is a good luck charm, when I have it, we go home, when I forget it. . . well, we don’t. LOL
That late Tuesday into the wee hours of Wednesday a few weeks ago, left me shaking in my boots and I have yet to stop shaking. I was ok with the PICU stay (could’ve used a more comfortable recliner to sleep in, but hey, who’s complaining), I was ok with the fact that nothing was really working, but Tray looked and felt ok, so we were working on it. I was ok with the conflicting opinions that are abound in the medical community, even amongst collegues within the same practice. But, all of that was ripped out from under me in just a few short hours, as I watched my son’s blood pressure get lower and lower, and watched his neurological status deteriorate before my very eyes, and as I watched the constant pacing and nervous smile of the cardiologist who never left our bedside from 2:00am on. Tray came out of the ordeal with virtually no memory of it at all (thanks to large doses of versed!) but, me, I’m scarred for life now. Now I know what I have to possibly face in the future for my son and I never want to go there again, but know that I don’t get the luxuary of getting that wish granted. I now know that this may just be the tip of the iceberg and I’m beyond scared of the future ramifications of his current symptoms.
Peter and I have been through so much with the kids and we don’t get easily spooked, but. . . something has us looking over both shoulders all the time now and I hate it.
I wanted, really wanted to go and offer support to a beautiful family who lost their little one to a brain tumor this past week. I was ready to go. . . and then couldn’t breath. Peter wasn’t home yet and I had just started getting dressed and I just couldn’t breath. I was beyond scared and realized that I don’t want to see another child’s funeral. I don’t want to be looking at their service and thinking “would Tray like that?” I have no reason to feel that this is at all a possibility for Tray, but I didn’t 2 weeks ago either and boy, did that change in a few hours. I pray the family will understand when I am finally able to meet them. I pray that my friends will understand why I didn’t show up for a family when they needed the support the most. But, my body and mind wouldn’t let me.
School is coming and I pray it brings a change of seasons, from sickness and uncertainty to health and concrete answers.
The kids are doing well. Joshua has IVIG tomorrow (today actually LOL), Tray will see the cardiologist and I have A LOT of issues to discuss with him. Tuesday, Sergio and Joshua see the opthamologist, then Kama goes to the vet followed by Annette’s first official “Self Determination” meeting. Wednesday. . . oh lordy, I forgot what’s on Wednesday. Thursday, Annette has her surgery to close her g-tube. Friday, Sergio goes to the gastroenterologist, where I need to talk about how much he gags and the best method of feeding him.
On Saturday, Nettie and I will be going school shopping (I’ll be getting for them all, but Nettie will be looking for her, of course LOL). I love shopping!
Well, that’s it for now. Just a vent day I guess. Actually, just putting the words down has helped relieve some of the anxiety.
Take care and God Bless,
Renee
Friday, August 22, 2008 7:17 PM CDT
Hello there everyone!
Oye, it's been a better few days! LOL We've actually had the wonderful opportunity to get out and enjoy some nice weather, the kids have had some playdates and today we even went swimming! First time the entire summer! Granted it was indoors at the YMCA, but, none-the-less, they were swimming. LOL
You really appreciate health when it's escaped you for so long. It's like a sore throat, you know they hurt, but you don't realize until you have one, HOW bad they hurt. Yet, once it's gone it's hard to remember the exact pain sensation again. Akin to childbirth I would say. We've been in crisis mode for so long, that when you aren't, you quickly forget the stress and can enjoy what you have at the moment you have it. That has been the last three days.
Marriela's meds are starting to work!! I can't tell you what a blessing this is. Anyone out there who deals with a child with a behavioral/emotional disability understands the incredible level of stress the behaviors can add to a day. Marriela has been a long period of difficult days. Many quick "cycles" from happy to profound sadness, to outright anger and back to happy. It's an exhausting experience and can wear on you when all you want to do is play and love and enjoy your time with your child and instead you walk on egg shells never knowing what is going to be the next thing to make her lose it. But, with all of that said, her new med is working! In fact, the past two days have been incredibly wonderful. Tonight she "put on" a concert for us outside, Hannah Montana wig, microphone and all!!! She was easy going and animated it was just such a pleasure to see her so happy and joyful. We are going to make a time change to see if we can get the med to last the whole day. Can you tell how happy I am for her (and me LOL).
Tray is doing well. He continues to have a very loose cough (definately a cardiac cough) and his sats continue to be low. We tried a trial of high dose lasix for 3 days, but he actually started going less and swelling more rather than going more and swelling less. Go figure. That one stummped the doc, but hey, which of my kids don't stump the docs? His INR was still too high so we're now on 3mg of Coumadin daily and we'll recheck it on Monday. He sees Dr. Attallah on Monday for a full cardiology workup. I'm requesting an excercise stress test since many of Tray's issues become worse upon exsertion. But, he he's had a playdate, Chinese food, several trips to the playground and swimming. He's busy and happy. That's all I wanted for him.
Joshua is doing well. He is going to try to do a 24 hour urine collection tomorrow if his mother could remember to get out he stupid container BEFORE he has to go. LOL We've tried 2 days in a row and I hear him going and scream, "Is that you in there Joshua?!" and he say's "Oh yeah, I forgot." Sigh. LOL On a not so good note, he had a drop seizure last night in his room. Tray, the great brother that he is, actually tried to hold him up, but as he put it, "Joshua is heavy!" He let him fall gently as he could. So we're back to the helmet and constant vigilance in watching him on all stairs, heights and when out and about on any hard surface. I'm e-mailing the neurologist to let him know we want to pursue the Felbatol study. The depakote worked, but we also think it is to blame for many of his stomach issues. He has had a good time this past week though and even enjoyed the YMCA (he hates to get wet, but once he saw the kids having fun, he was willing to put on his suit and had a blast!).
Annette is still at camp. I hope she had a good time. The almni week is different than the regular weeks, since all of the kids are older and graduates of the program. Many of the counselors have to be back to college by this session so there are alot of unfamiliar faces. It's one the sad realities of growing up. The things of familiarity are replaced with all new experiences, and most of the time this is a good thing, sometimes, it can be disheartening. A text I received from her suggested that this is one of those times. But, with any luck at all, she came around and learned to have a good time, just like she did at that college program! I miss her tremendously though.
Cody is. . . well, Cody. He is always running around torturing someone with swords stuffed down the back of his shirt and sticks in his belt loops as "weapans" and "bowarrooos". He is ALL boy and then some. He innately knows how to do wrestling moves and I have to pry him off of one the kids about every half hour or so. He has also taken to running into people full force from a full running sprint across the house. Daddy has to be VERY careful to dodge the brunt of the blow around the netherlands. Which of course just makes Cody think it's that much funnier. LOL
Sergio is doing great. Today he was a bit irritable, but he had a great night so I don't know what that was all about. We tried him in a new stander with the PT, and discovered that he's too short for even things meant for kids older than one years old. LOL My poor short but wide baby! He did NOT like the stander at all and it would have made no difference if it fit or not I'm pretty sure. LOL We had his blood drawn yesterday to see if he has any adrenal function at all. If he does, then we can go ahead and wean him completely off his steroids. However, if he has complete adreanal failure, then we need to continue steroids until they kick in. We will, however, switch it over to hydrocortisone vs. the pediapred. Apparently, hydrocortisone is a much more natural steroid than the ora or pedipreds. This should allow his body to begining making it's own steroids and for his adreanal glands to begin functioning again. I pray hard that he has function so we can just go off of the stuff all together, but know, that this is a far off reality. I can still pray though!
Well, that's the gang. I don't think I forgot anyone. LOL
In my thoughts and prayers,
Renee
Monday, August 18, 2008 6:20 PM CDT
Breathing a tad of fresh air and yet holding my breath. . .
I realize that's an oxymoron, but the truth. I had the pleasure of finally getting the kids out of the house (at least 5 of them, (Joshua was at Casey's Place)and went to the playground to meet with their cousin's and other family. It was a beautiful day and I was so enjoying the breeze. Tray was running with some new friends (he makes friends soooo easily!) and Sergio fell asleep on the blanket under the tree. It was so nice. But. . . the whole time I was just waiting for Tray to come and say "I don't feel good." I was sure it would happen, as he was running and it was close to 90 degrees. I did take some precautions, big glass of ice water, short time (only stayed for 45 minutes total) and he cooled off regularly in the misting spray. I'm thrilled to say, these few precautions worked, because he had a great time and even ate an icecream afterwards on the way home. Phew. I don't know how I'm going to let him run around at school or gym. I'm a nervous wreck!
The rest of the gang, I'm pleased beyond pleased to report, are doing well. Marriela still has yet to really so any response to her new med, but we're staying busy which keeps her moving and thus less irritable. Sergio is doing great and made the drop to only 1.5 mls of orapred every other day yesterday. Joshua and Sergio have an appointment with the endocrinologist tomorrow. The doc is going to be upset with me because I was suppose to do a 24 hour urine collection on Joshua, but, believe it or not, it just never felt like we had a full 24 hours to dedicate to catching his pee. Either I was out, he was sick, Tray was sick, he was away, etc. I'm expecting a scolding, and I'll take it, since the doc is trying to determine if he should restart his calcium supplement back up, or if he needs to stop the Lupron injections. I certainly did not help contribute to that decision. LOL
Nettie is leaving for camp this Wednesday and then the following week, she is so excited, it's SURGERY week. She will be officially and ex-gtube wearing chick. And not a minute to soon. Now we don't have to worry about all of her new school clothes having yucky stains all over them from the leakage.
Well, just wanted to let you know that we're working on a good day today. Peter took the boys to see the movie The Mummy as a token of comfort for Tray who has missed his big week at camp. Tray also realized today that he has to have finger pokes forever and he was so sad at that (I told him we had to go in on Wednesday for one). I promised him that it would soon be so easy that he'd be doing it himself. . . he really did do his own finger pokes when he was 3!! He liked that idea.
Sergio is yelling, time for dinner.
Take Care and God Bless,
Renee
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Finding joy in the little things. . .
Things continue to be unsettled here. We did make a full recovery from the latest stomach bug, including Joshua, by Thursday. However, the bleeding did earn him a full endoscopy and colonoscopy on the day after his 13th birthday, Sept. 22. Making matters worse is the fact that he can't have anything but clear liquids on his birthday (nope, no cake, ice cream, etc.). So we're going to celebrate his birthday on the 20th instead which is a Friday. I pray he'll understand. LOL
Marriela has now started a new medication. We took her off of the Risperadol in case it was responsible for her new found need to urinate at least 40 times a day. Apparently this is a known, but rare, side effect. In addition, it wasn't working anymore. She was just out of control behavior wise and her anxieties are through the roof. So we are now on Abilify (often used in higher doses to treat bipolar - lots of commercials on tv now for it LOL). She's only been on it one day, so I need to be patient to see if it's working. I am blessed to have some amazingly wonderful and child friendly friends who came and picked up Marriela and took her to the beach and back to her house for almost 9 HOURS!! I was just waiting for the phone call to come get her and in all of my craziness here, didn't get to call Andrea until late afternoon. She said that Marriela would be sad if I came then and could I wait LONGER!! LOL It was such wonderful day for her and she deserved that so much - THANK YOU ANDREA AND LAURA!!!!!!!
After Joshua awoke feeling better on Thursday, I sent him and Nettie off to Casey's Place for the day. Then Tray got invited to a play date with is friend, Nour, so I dropped him off there after Sergio's PT session. Then I took the three little ones to Mercer Park in Baldwinsville where they had a very nice time.
But. . . then my dad called and he was sick again. Off to the ER and another visit to the ICU and a two day hospital stay for uncontrolled sugars. Someone HAD to get sick, it's just the way it's been this summer.
Sergio and Cody are doing great. Sergio is such a little joy . . . and so far, low matianence as well. LOL He's sleeping through the night beautifully and we're lowering his dose of steroids down to just 1.5cc tomorrow!!! He does 3 every other day doses at this and then we go down to 1.0cc and then .5 and then. . . NONE!!!! I've stopped trialing his O2 down, now that I know he can do it, I don't want to stress his system as we work on the very last stages of the steroid wean. But, I'm confident we'll make progress rapidly in that arena as well.
Annette is getting ready to go to camp on Wednesday. She's soooo ready to have this stupid g-tube closed so that it will stop leaking once and for all and stop hurting her. Even with a tube in, she's leaking and her skin continues to be very raw. The 28th is her big day!
And then there's Tray. I had really thought we working on the road to recovery with no problem. . . I was wrong. He's definately having issues that continue to alarm me. My red flags are going off all over the place, but since it's not his rythm or rate, we can only assume it's worsening heart failure. If he exerts himself AT ALL, he gets dizzy, vomits and feels profoundly fatigued. I've run several EKG's using his event monitor and they're all fine. But he's not. He spunks up about 20 - 30 minutes after each episode, but it's happened now 4 times in the past 48 hours. I will be so much more relieved once NYC takes a close look at him. I feel strongly that his heart is the reason his Sats continue to be low, he has no energy and his appetite has fallen off more and more. He now also has a dry cough, very common with heart failure. If he continues to display these issues, then we they will do an emergency cath, but we pray he can wait for NY to do it, as they will want theirs for the transplant evaluation. Sadly, this also means he'll be missing his fun week of camp, as I just can't risk him getting ill all the way down there. He's heartbroken. . . literally and figuratively. Sigh.
We'll that's it for now. There is more, but you wouldn't believe it if I told you so I'll spare you the reading. I'm now just finding joy in the small things like my trip outside to Mercer park, the family picnic we had today until Tray became ill, a short walk around the block with Marriela on her bike, etc. If I start to think to far ahead, like hours rather than days, I get overwhelmed quickly and need to pull it all back in. I was looking at the sky yesterday on the way to visit my dad at the hospital and the song Amazing Grace came on and KNEW, just KNEW God was telling me to hang in there. It will all be ok and it always has been for us, but this summer is hard to keep that in mind. I needed that reminder, right there and then. . .
In my thoughts and prayers,
Renee
Wednesday, August 13, 2008 1:56 PM CDT
Hi everyone,
Welcome to the never ending sick house. We've had yet ANOTHER stomach bug move it's way through and guess who got hit the hardest and is earning himself another trip the ER tonight if he doesn't look a WHOLE lot better in the next 3 hours, yep, Joshua. Cody started with the diarreha yesterday which lasted most of the day. Then Tray vomited once yesterday. Peter had a slightly off tummy. But, Joshua, has had 2 bloody stools, started vomiting last night and hasn't stopped yet and hasn't been awake today for more than 3, 15 minute, intervals. He's had 3 oz of gatorade the entire day and hasn't eaten in about 4 days. Yep, he stopped eating just shy of a week ago WELL before this bug even hit, so he was already on the brink of an issue, he just got pushed to the limit that much faster as a result of the virus. I'm beyond frustrated with this summer so far. There has never been a more medically complex time in our family's life than this past summer. I am very frustrated for Joshua, as I had hoped and prayed, we were on our way to being issue free. Alas, it's not to be.
Add to all of this the constant, persitant rain that can't JUST be rain, but has to be rain with thunder and lightnign. If it were just rain, we'd be outside dancing and playing in it, but, we can't. I was looking at a list of activities I had all planned out to do this summer with the kids and just started crying as I realized we didn't do one single thing on the list other than visit Beaver Lake. And that, we did only on the weekend when I had Peter with me due to always worrying what I would do by myself if something happened with Tray or Joshua. They've had a terrible summer and it breaks my heart for all of them. Poor Marriela sits here and cries daily about how she doesn't want to stay here (meaning she wants to go to a park, or for a walk or to the library, etc.) but, then you see Joshua white as a sheet lying next to his puke bucket, sound asleep, and you know that there is NO way you can take them anywhere. Not to mention that it's pouring out AGAIN!
I'm sorry, just frustrated and angry at this point in time.
Tray had his PT/INR finger poke to see if his blood is thin enough or too thin. It was too high and now we need to go back on Friday for another poke since he is going to camp on Sunday and we won't know how high his level was for over a week. The good news was that he is still in sinus rhythm, even though I thought maybe not last night after he vomited at the picnic. He looked just awful, but it must have been the virus. Even Tray who has been having such a hard time, has already fully recovered from this bug. Joshua, still sick as a dog.
We did find out that child development is going to make the referal for Marriela to see a child pschytrist to get her a formal diagnosis and then onto the appropriate medications. We did decide today to wean her off of the Risperadol and move her to Abilify - a med commonly used for bipolar diagnosis. We hope that this will get her frustration levels and anxiety down to a much more tolerable level than where they are currently.
Nettie is excited for this coming weekend at Casey's Place (Joshua is suppose to be going too) and then next Wednesday she is leaving for her one and only camp this summer. She has missed Double H Hole in the Woods so much and she's thrilled to go back for the Alumni weekend this year.
Cody is doing great and, thank God, isn't aware of all the recent stressors and doesn't really know that he's had a cruddy summer LOL.
Sergio is doing fantastic. We went to a picnic for adoptive and foster parents in Cayuga Co. He got to spend about 2 hours with his foster "grandma" who thought he looked great. I was so pleased to hear that! LOL She fed him his tube feeding and everything. I showed off his new skills (standing, ssshhhing, etc.) and she was so happy and impressed.
Well, I need to go and check on Joshua and change all of my bedding from last night, ugh.
Take Care and God Bless,
Renee
Thursday, August 7, 2008 10:15 PM CDT
Today we celebrated Marriela's birthday at Chuck E. Chesse's. She had a good time, but could not get past her anxiety about Chuck E. coming out to visit. After cake and presents she wanted out of there "just in case". LOL
Yesterday we saw Neonatal clinic with Sergio, Cardiology with Trayvon and the vascular lab for another ultrasound.
Neonatal went great and they were thrilled with Sergio's progress. He goes back for one more follow-up at the age of 4. I can't wait to show him how well he's doing, I have 18 months to whip him into shape!
Cardiology was good . . . and bad. The good was that Tray can go to camp if he's stable and he can walk independently on his leg. We're working on that one and I think he'll do it. He did great during his echo and EKG. The other good news is that his heart is still definately in a normal sinus rhythm and he's had nothing to report on the event monitor he's wearing. The bad. . . his tricuspid valve (he only has one large valve between the top and bottom of his heart) is leaking severely now - it used to only be mild. I'm not sure of the ramifications of this, but I'm sure they aren't positive. The doctor felt NYC would be able to guide us in how to consider this new development in his transplant process. We also had to start his coumadin. As of now, he'll be on the coumadin for the rest of this heart's life. If he gets a transplant, it will no longer be necessary, if he doesn't get one (either because he can't or he doesn't need one) he will remain on it. Wednesday he goes for his first finger poke to go over his PT/INR (his clotting times). Tray agreed that this is definately better than a blood draw though, so he was willing to tolerate the idea (we'll see what happens when we actually get to Wednesday's finger stick LOL). The doctor also shared his suspicion that the one drug, Amiodorone, is still probably in his system, and what is maintaining Tray's rhythm right now. He feels this way because the Propaforone (what he's home with now) was used first in the ICU and didn't work, then, after they shocked him the first time, it didn't help him stay in sinus rhythm. His logic is scary and I pray wrong, because that means, as this other drug (which has a very, very long half life in the body - sometimes for weeks to a month) leaves his body, he will be vulnerable to the arrythmia returning. Prayers for continued stable health are much needed to make it to NYC for his work-up and guidence.
The rest of the kids are great. Nettie had a great time and LOVED her taste of independence. She has a new life goal of writing a book about her life. How cool is that! I have no doubt she will do whatever she puts her mind to it.
Well, that's it for now.
In my thoughts and prayers,
Renee
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HAPPY BIRTHDAY MARRIELA!!!!! 6 years ago you were born and given no chance to live. They thought you were much earlier than you really were and it took a nurse more than 4 minutes after you were born to realize that you were fighting for your little life! 4 months in the NICU, 3 months on a ventilator, countless near death experiences and here you are today, an amazing, beautiful six year old child. My daughter. How truly wonderful life is.
We had a family party tonight for Marriela (I thought I was going to have to sedate her until daddy got home for her party. . . let's just say, she doesn't have a well developed sense of delayed gratification!!!! LOL). She is now the proud owner of a Barbie "big girl" pink bike. She LOVES it but, unfortunately it was storming out at the time of the party and she wasn't able to take it out for a stroll yet. Daddy promised her he'd wake up early to take her for a trip around the block in the morning. Lucky daddy! LOL
It's been a busy week of appointments. Yesterday we went to the pediatrician to have Tray's leg looked at. She was worried that the pulses are still very different in the two legs. He was moving all around on it yesterday at the Familycapped Picnic, but today, he's been very sore and it's itching him like crazy. We go tomorrow for the repeat ultrasound.
Tuesday Sergio went to the pulmonologist who was THRILLED to see how well he was doing. We're now on only 2.5ml of steroids every other day and . . . drumroll please. . . I moved his O2 down to .6L from .8L and he's doing fantastic! I thought I would try it for only an hour or two at a time to get him used to it, but his sats haven't gone below 95 nd his heart rate is actually LOWER on the lower rate so I have left him at .6L since 2p today. I just checked on him and he's at 99 nd 112 heart rate. How cool is that! Sergio's lost weight (finally, as the steroids come down, so will his weight), can stand solid now with just his hands held (and actually seems to enjoy it) has started clapping his hands on imitation and actually tried to play with Cody today (Cody was playing wrestlers and Sergio crawled over and handed him one!). He's doing so good.
Joshua saw GI today and they are going to do a bunch of lab work this Monday when he gets his IVIG. We also have to do our 24 hour urine collection this Sunday so we can turn it in on Monday when we go in. GI is rechecking his Sed rate, his eosinophils, white count, and some liver studies related to coagulation (since he is covered in bruises again). If any of the labs look funny then I already signed a consent form for an endoscopy, colonoscopy and biopsies. I pray that we have passed this issue and no further intervention is needed. Joshua looks good, but is still having seizures. I think missing his IVIG has really thrown his body for a loop.
Nettie comes home tomorrow. She has enjoyed herself I think. LOL We get to go see her graduation program tomorrow night (taking the whole family). Her g-tube is bothering her again, I hope it's not all raw. She didn't bring any gauze with her so she's just left it open to the air and it's not working for her. So we'll work on getting that back into shape before she's off to her camp on the 20th.
Cody is doing great and has no issues at all! Isn't that wonderful! LOL
Tray sees the cardiologist tomorrow and Sergio goes to see the neonatal follow-up clinic followed by the ultrasound.
We are also confirmed for our trip to NYC on the 10th of September. Here's our schedule:
9:00a Surgery
10:00a Financial
10:30a Nutritionist
11:30a Echo/EKG
12:30p Psychologist
1:00p Transplant Doc
2:00p Social worker
3:00p Lab work
3:30p Genetics
We'll have to leave here by 4:00am to make it there for the 8:30a check-in time. I'm tired just thinking about it! Luckily, other than the lab work, it's all painless for Tray, just long and boring. LOL I will have to sit down with him and explain what it is we're planning so they don't shock him as they begin talking to him about it. Oh, that's going to be a tough one.
Well, it's time for sleep.
Take Care and God Bless,
Renee
Monday, August 4, 2008 7:51 PM CDT
Hi everyone,
Well, I am a slacker. We're home and well at this time. We actually got home on Sunday afternoon.
His foot is doing better each day, though still very, very swollen. He's willing to hobble on it and started going up and down the stairs today. We're hot packing it and using Motrin for pain. The pediatrician will look at it on Wednesday to be sure we're still moving in the right direction.
His oxygen levels have been stable in the low 90's, high 80's for the entire day and last night. He only hit 83 wice and moved and adjusted himself and his numbers went right up without my assistance. The fluid must be moving along and I suspect that by the end of the week things will be almost back his baseline.
We see cardiology on Friday for a full evaluation (echo, EKG, and check-up). I'm praying that all goes well and that he has no residual issues that may preclude him from attending his camp. It's a camp specifically for children with serious heart issues so I can't imagine they would say "no" but, I'm sure they need the reassurances of the docs up here. He doesn't leave until the 17th, so pray that he is able to go and no further issues arise in the mean time.
We have a tenative appointment in NY at Columbia Presbyterian for a full transplant workup on September 10, 2008. Apparently they complete the entire work-up in one day. We meet with a social worker, a psychologist, a geneticist, have an echo, EKG, lots and lots of lab work and finally a visit with the transplant coordinator. Based on the opinions of our doctor here, we'll probably be listed, BUT at the lowest level.
There are 4 levels of transplant, 2b, 2a, 1b, 1a. 1a are those in the ICU with only days to live until transplant. 1b are those who are hospital bound and on 2 or more IV meds to maintain heart function. 2a and those who may be on IV meds, but are well enough to live at home still and 2b are those, like Tray, have a heart that needs replacing, but aren't in critical status at the time. More than 95 f the hearts available will go to 1a and 1b patients with a tiny fraction going to those at the 2a level. But, by being listed at the 2b status, we are more assured the chance of moving up the list quickly if things change. Columbia has done more pediatric heart transplants than any other facility from the Mississippi east. They are also the primary facility in the US that transplants the most complicated children and according to our last eval, Tray has the most serious and dangerous combination of heart defects you could have. Sigh.
The rest of the kids, Praise God, are doing well. Sergio is very happy and healthy and I'm proud to report, now steroid free every other day. This is a huge milestone for him, as he has never made it to the point where he has been steriod free for even every other day let alone every day!! We're going to make every effort to have him steroid free by September 1st and his surgery has been rescheduled for September 18th. This should be great for him and we should really start to see the "real" Sergio beneath that heavy exterior. He's getting so strong now and can stand with assistance for almost a full minute. He is imitating sounds from his toys and says "shhhhhh" when Peter plays the "shhhshhhing" game with him. It is sooo cute!!
Marriela and Cody are going to have some playdates this week. My amazing group of friends from church have stepped forward and offered to provide babysitting while I work my way through 6 appointments scheduled for the rest of the week. Now Marriela will still be able to attend school and Cody won't have to sit through doctor's office after doctor's office all week. THANK YOU ALL!!!
Speaking of kindness, we've been recieving some delicious meals. My kids (and husband) are going to be expecting me to start cooking now that they have tasted what real food is this week! Shoot. LOL
Annette is at OCC for the week doing a program called New Visions. It's a "taste" of the college life. She is staying in a dorm with about 70 other "students", ages 18 - 70 . They attend classes all day long and then they have "social" events in the evening that she can chose to participate in. She's enjoying the independence and hating it at the same time. She has asked for help several times and the staff have told her to "do it yourself" and begrudgingly she has. But, boy is it a hard lesson in life to learn!
Joshua is going to Casey's Place Tue and Thur of this week. I'm glad he is finally getting to enjoy his turn, as he LOVES going to Casey's Place. He has an appointment with GI on Thursday to discuss his possible diagnosis. I am assuming, since he is currently symptom free at this time, we will just do lab work and go from there. If the labs still are as funky as they were, then they'll probably do an endoscopy and get some biopsies. One step at a time though.
And last but not least, Marriela turns 6 on the 7th!!!! I can't make it to her birthday at summer school (so very sad about that too) due to Joshua's GI appointment, but I'm sending cupcakes and goody bags for her class. She'll be treated like a queen when I get home. We're getting her a bike and some Hannah Montana items, she'll be thrilled with the bike!
Well, that's it for now.
Take Care and God Bless,
Renee
Saturday, August 2, 2008 10:14 AM CDT
Well, we were so hoping that we would be able to update from home today, but alas, it's not to be. Though Tray looks and feels much, much better. We never made our visit to the step down unit, as his leg continued to swell and he is still having premature heat beats when he sleeps. In addition to that, he still needs oxygen at night when he's sleeping. Apparently, he needs to stay one more night (that's what they keep saying) to make sure the leg continues to improve with heat packs and a nice warm bath. He also has a pleural effusion - or water in his lung - a side effect of his heart failure he had due to the irregular rhythm he was in for so long. This fluid is making it hard for his lung to fully expand and thus the reason he is still needing oxygen. We're going to try an extra heavy dose of lasix today to see if we can't get that fluid off of his lung so we don't need to the O2 when sleeping.
Other than our continued trek in the ICU, we're doing good. Peter brought Joshua, Cody and Marriela up to see Tray yesterday and that was nice. I hadn't seen Cody and Joshua in 5 days and I missed them. Peter is bringing me some coffee and donuts from Dunkin' Donuts in a bit and I'll get to say hi to them all for a minute or two. But, apparently they're not all fully clothed so they can't get out of the car. LOL Peter is going to stay with the kids all day today rather than worry about finding care again, since we're really just being watched at this point.
I need to express an enourmous amount of gratitude and thank yous to so many people for helping us out during this chaotic time. This was a total and surreal suprise and without all of the support from Stacey, Jill, Brenda, my Dad, and all of those bringing us delicious meals, I don't know how we would have done this. There are no words big enough to express my deepest thanks.
With Love,
Renee
Friday, August 1, 2008 7:47 AM CDT
I am so happy to report that Tray has turned a corner. We are well enough to move to the step down unit. However, first he needs to have blood drawn and since he has NO veins left, they have to stick him in an artery in his wrist. I am so sad that he has to keep going through all of this, but if it means he gets to go home soon, then we'll get through it. He's been sitting in a chair all day and playing games, eating lunch, watching movies and visiting with Joshua, Cody, Marriela and Daddy for a while. His oxygen levels are good, not as good as they were before we were admitted, but better than we were yesterday. His heart rate has gone up to a normal rate and has had no more of the abnormal beats he was having last night. His food has stayed down and we know why his foot hurts. He has a small clot in his calf area, but it's superficial and just needs time and maybe a heat pack to get better. He's IV free and just being monitored continously for his rythm, which is why we have to go to the step down unit and not just to a regular floor or home. But, I feel like tomorrow will be the day. It's been a long and scary ride but, we made it through it again. Tray's not going anywhere anytime soon.
Next time I update, with any luck, we'll be doing it from home.
Renee
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Wow, have we been on a roller coaster ride. Tray is still in the PICU but is now stable and improving. On Wednesday morning we thought we were going to be going down a very, very different road.
It all started at 4:00 am on Monday morning. He woke up and said "My heart hurts." The sat monitor was going crazy and his sats were only in the low 80's. However, I didn't feel it was an actual "emergency" so I waited until 8:00 and then brought him to the ER after his cardiologist wasn't going to be able to see him. When we got there, his rate was over 200 and in a very abnormal rhythm. They gave him a dose of med called Adenisone (which required the assistance of over 12 docs, nurses and such plus the crash cart) which didn't work. As a result we were sent to the PICU. They tried to convert him with a med given orally and after 24 hours nothing happened. So they shocked him, it worked for 10 minutes and then it converted back to his abnormal rhythm again. Then they started him on Cardizem to try and decrease his heart rate and lo and behold he converted to normal rhythm. But about 2 hours later he convereted back again. Unfortunately, this time, his body wasn't handeling it anymore and he started getting worse and worse. The cardiologist came in at 2:00am to start a new more powerful drug IV and waited to see if it would work. At 6:00am it was clear we were in trouble. His blood pressure was terrible, his sats were terrible even on lots of oxygen so they shocked him again. This time, thank God, it worked. So far he has maintained his normal rhythm. However, we still have some issues to deal with before we can get out of here. 1. He hasn't been able to keep food down. He eats, he vomits. 2. He still has a very low sat level for him. He is in the 86 - 88 range instead of at his normal 96 - 100 range. I am not happy with this at all. 3. His leg is swollen and sore with no explainable reason. Not happy with this at all either. 4. He is not able to sit up and play and be comfortable with out a lot of gasping for air and such.
Over all, he's not at death's door, but he is still not the same little boy I was running through Beaver Lake with just 5 days ago. I want him back to his baseline. Cardiology seems like since his rhythm is back his issues are resolved. But I am not ok with this.
Once we get out of here, we are going to NYC for a transplant evaluation. At this point, if we get back into that rhythm, there is very little time or therapy that can be offered to make his heart tolerate that type of rhythm for very long. At this point, we don't know if he can actually have a transplant because his anatomy may not be able to accept a normal heart. But, we won't know anything until we go down. I am hoping to do that within the month so that we are on their radar screen in case we need them long term or in a crisis.
The other kids are doing very well considering the chaos we've experienced lately. Sergio's surgery had to be canceled, Joshua's appointment was cancelled and Peter hasn't been to work all week.
The current plan is to assess his leg for a clot due to the swelling and pain. Then we are probably going to be moved to the step-down unit where they'll watch him for another day or so and wait until his stomach and lungs are doing better. In that time, I hope to have an appointment made for NYC and we know what our future game plan is.
Till next time,
Love,
Renee
Monday, July 28, 2008 12:42 AM CDT
We'll as you see, I tried to put up some pictures and my photo putting up skills seem to have all left me high and dry.
But, I thought I'd let you know we're having another mini crisis here (having way to many of these lately!). Tray is in the PICU at Upstate hospital with another episode of atrial flutter. The top part of his heart is beating at about 600 beats a minute and the bottom half is at about 200 beats a minute. He's uncomfortable and on oxygen. We're going to try another med (first one failed) to convert his rhythm back to a normal one, if that fails, we have to take him to the OR and "shock" his heart back into rhythm. He's sleeping now.
Have of the battle here was finding care for the rest of the kids and Sergio! But all is well in that area and I need to get back.
Prayers would be greatly appreciated!
Love,
Renee
Saturday, July 26, 2008 5:33 PM CDT
Oh, oh, oh my, when does school start again!????? It's been a long summer and most of it a hard one. . . with the stomach bugs, Joshua in the hospital, Sergio's sleepless nights, Nettie's g-tube, Marriela's poor ability to handle the lack of structure, etc. etc.. There has been some good times mixed in there and for that, we're grateful. But, here are some pics of why I'm looking forward to school starting again. LOL
With Love and Blessings,
Renee
Thursday, July 24, 2008 11:23 AM CDT
Update:
Heard from the doctor today and all of Joshua's labs came back normal except for one. When he had his labs drawn at camp other than potassium (due to dehydration) being low, his eosinophils were quite high - 21 Today's were 30 xtremely high. This has the doctor making an emergency appointment with a GI doc for an endoscopy to see if Joshua has something called Eosinophillic Gastroenteritis. In other words, his stomach is reacting to something he's eating and creating a very unhospitable place. If it's confirmed then he will undergo extensive food allergy testing. But, in most cases even eliminating the offending foods from the diet don't work and the people need to go on high dose steroids for life, OR on complete or partial tube fed diet to eliminate most or all food proteins from the diet. I was fearing Cancer was the issue so this has kind of blindsided me. I pray that this is not the answer either, but there doesn't seem to be any "easy" answers now. So we'll just take it one day at a time to see how things go. Your prayers are always appreciated!
Love,
Renee
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I come to you for the first time in weeks, with a clear head! LOL
Joshua went off to camp on Saturday, seemingly fully recovered from his last pain episode, only to have it return full force Monday night. He spent the night in the infirmary at camp and by midnight was dehydrated and needed to have his port accessed and IV fluids started. I went out Wednesday morning to pick him up, my dad was kind enough to go with me and Sergio in case I needed help with Joshua. When I arrived I found a very well looking child in bed with a 42" flat screen tv at the end of his bed with all of the video, dvd and vhs's you could ever dream of. He was laughing at the newest version of the Pink Panther and was none to rushed to get out of bed and off to home. LOL I left him accessed in case the doc wanted labs, but since he was acting so good, I just bypassed the doc and went home, took out his needle and decided to ride out the night to see what happened. He had a bout of diareha at midnight and another at 7am. I made an appointment with the ped and we did labs, still waiting to hear on those. The doc is also going to call GI and our admitting doc from earlier in the month to see what they may or may not think it is.
With all of that, we got an appointment for Nettie at the surgeon's office. It's official, she's having surgery to close it! YEAH! In the mean time she had a small tube put in to help seal up the hole to prevent the drainage that was causing so much damage. However, this morning, the balloon had already popped. I put on my thinking cap and rummaged through Sergio's supplies (he has a g-tube also) and found an old "sizer" tube. This is a small thin tube they use to determine what length feeding tube to order. It was unused and had a balloon on the end and a nice little stopper on the top and violia! We had a new tube to use. It is WAY better than the one they used. She should be on the schedule for the week of the 11th for closure.
The other good news is the fact that she is going to go away for a week to Onondoga Community College for a 6 day "college" experience. They get to go and stay in the dorms, take "college" courses, have a "prom" and even a graduation at the end. She is thrilled to be going! She's going from 8/3 - 8/8. She is also going away to Camp from 8/20 - 8/24 (same Camp Joshua went to, but she is in the Alumi session since she has aged out).
Tray is doing awesome and I just finished arrange his transportaion out to his Hope with Heart Camp in Warwick, NY. He is going from 8/17 - 8/23. He is also seeing his cardiologist for his first ever. . . one year follow-up appointment!! We have had NO issues at all in the past year and have no fear at all that he is still doing great. I will, however, insist this time that we do an echo since he hasn't had one in quite some time. But, that's just for assurances, not due to concern. He's happy, healthy and wonderful!
Marriela arrived home with Peter yesterday after the school called (while I was at the surgeon's office with Nettie) to report she had vomitted all over the nurses office. SIGH. Will it ever end! LOL She got sick one more time, a few loose stools and woke up this morning, ate pizza and went to school with no further complaints. YEAH!!
Sergio is doing great and has slept through the last 2 nights with problem until 5 and 6 (yes, I'd love him to sleep a bit later, but uninterrupted is just as awesome, so I won't complain!). He's well on his way to a full recovery from his ears and will have his surgery a week from today.
I have the paperwork finally for nursing for Joshua (to get his IVIG at home) and for Sergio (to watch him at night and when I need to go out during the day some days a week). Should hear something back in a week or two! YEAH!
So, things are still "undetermined" for Joshua, better for Nettie, better for Marriela, better for Sergio and Tray and Cody continue to be well. As you can see, things are better in most areas.
With love and blessings,
Renee
Friday, July 18, 2008 10:27 AM CDT
Hi everyone,
We’re back from our trip to Glens Falls and it was nice. I can’t say wonderful, as Sergio only slept for 3 hours Saturday night. He was beyond miserable. I bought some cold medicine and that seemed to help and he was great at the picnic all day Sunday. We came home on Monday and he did well until the night. Then we started all over. I had just had them at the doctor on Friday so I didn’t want to run him right back in. . .
Fastforward to Wednesday. . . Joshua has IVIG and we are running late as usual. Joshua starts screaming his belly is hurting really bad. I tell him that he HAS to get dressed and we’ll see what the doctors at the clinic can do to help him. It was Déjà vu all over again! UGH! I finally get him in the car but he is not going to take his meds. I call the clinic and tell him that we need IV pre-meds and to let his doctor know we’re having an issue. I drop off three at my sister-in-laws amongst varying levels of protest and race to get Joshua there as he is screaming he can’t take it anymore. I unload Sergio and all of his stuff and beg, plead and drag Joshua across the parking lot to get him inside. We finally get into 5C, they take him straight back, seen by doctor, suggest trying Tums before taking his seizure meds (which are in my pocket), move him to an infusion chair, wait for the Tums and his IVIG. Pain starts again and he is beyond agony. . . and then vomits all over. He feels a bit better for a while. Speak to doctor and neurologist who begin to question if these belly aches are actually a type of seizure. What the heck lets give him a dose of meds that stop seizures called Ativan. We’ve used this at home, but have only given him 2mg and he slept for 8 hours. They gave him 4mg IV. He was in a coma for the remainder of the day. When the IVIG was done, his stomach still hurt (so it wasn’t a seizure) and he had profound diareaha while asleep on the toilet. Did I mention that Sergio was virtually inconsolable all day?! What a marathon day that was.
Yesterday, call pediatrician to tell her that I have three kids who have to come in TODAY! The third one you ask. . . Cody. He woke up for the second day in a row crying that his “bug” (our adoring word for what makes him a boy) hurts. Well, upon closer inspection it is actually the area above his bug and below his belly button. Sigh. We get a 3:00pm appointment.
Peter meets me. Joshua is looking amazingly well and Cody no longer complains of any pain. I seem to have cured them between 9am and 3pm. Works for me. Sergio on the other hand was burning up when I went to get him out of the car seat (fever free going in, boiling hot coming out). Verdicts – Joshua has a bug, Cody needs a urine sample (which he won’t give voluntarily at the office, so we have to catch it here) and Sergio has severe bilateral ear infections.
Last night, I slept from 10p to 2a. This seemed like an eternity to me compared from my previous nights! LOL At 2a, Annette calls me on my cell phone (she is upstairs and I’m down on the couch until Sergio gets nursing) to tell me her belly is hurting and she has “the runs”. Load her up on Immodium, back to bed. At 2:22a, Sergio awakes screaming. Give him Tylenol, numbing ear drops, rock him, sing, pray and rock some more. He’s inconsolable. The more he cries, the more secretions he makes, the more I have to suction him, which makes him cry more. This went on until 4am at which time he was now due for his Motrin (added some benedryl as well to try and dry up his poor nose so he could breath). Back to sleep until 6:30a when Marriela asks me if she can have brownie bites again for breakfast. You read that correctly, again. She seems to know what I’m at my weakest point and hits me when I’m down. “Of course honey, you can have brownie bites for breakfast as long as you sit and don’t so much as breath loudly, you can have anything you want.”
BUT. . . Sergio woke up today with an amazing smile on is face and a giggle. Joshua is poop free and Cody has had no pain. Marriela made it on her bus without incident and I actually drank a cup of coffee uninterrupted! So it’s been a great day and the reason I love being a mom. But you really question yourself when you’re seriously sleep deprived and no one seems to be able to stay healthy for more than 24 hours!
Here’s to an uneventful and restful weekend.
Take Care and God Bless,
Renee
TUESDAY, JULY 15, 2008
Hi everyone!
Well, things have improved some since the last update.
Joshua is well finally! As a matter of fact, he is doing great! He is pain free and even better, he is seizure free right now!! He hasn't had a single seizure in over three days! What a blessing. He hasn't worn his helmet now for over 3 weeks (since the day he started the depakote) and we increased one of his meds a tad and the staring and aphasia seizures have also stopped. I am so pleased. We do have to fight wit him a bit to go to his Read 180 program but he's doing it and seems fine once he gets home LOL.
Tray continues to do great! He went off to camp and had a fantastic time. He has one more camp this summer, Hope with Heart down by NYC.
Annette's g-tube, though still leaking, is doing better. We have found some solutions to keep her skin from breaking down and now it's more of an annoyance than a painful problem. So we are waiting out the next month to see if in fact, we do need to have the hole surgically closed. I'm thinking there is a chance we wont have too! Other than that, she's doing great.
Marriela has had a small increase in her meds and she is doing better. She loves her summer school program and so do I! She thrives on structure and when she doesn't have a bus to wake up and prepare for, she's a mess. She is doing lots of fun stuff at school and comes home all smiles. Her excema is doing great now and we are back on track with her asthma as well.
Cody and Sergio both got worse and worse. Off to the doctors went Cody and Sergio. The doctor said that Cody sounded way worse than Sergio when she listened, even though Sergio sounded terrible to me! If Sergio sounded like Cody she would have admitted him! So onto the high dose steroids went Cody (oh what a joy those steroids are! NOT). He is still sounding cruddy, but much better than he was. Sergio went on a slightly higer dose of steroids and more nebulizers, but he has yet to make the big turn around that Cody has. He also ran a fever last night and when his motrin wears off, he just cries and cries and bangs his head. I'm fairly confident that it's his sinus' but, since he had a cold, they will make me wait for 10 days to prove that it's not just a virus before they treat him with anything else. So, we'll just wait it out. But, it makes for some very, very long nights doing all of the nebs, meds, feedings, and monitoring of his O2 levels. We're waiting for the nursing to kick in in a few weeks. If he doesn't improve considerably in the next few days, we'll have to reschedule his surgery for next month. Sigh.
I thought I would add some of the things my kids have said lately that have cracked me up.
1. Nettie was being followed by a couple of young men who were representing the Mormons, he wanted to know if he could talk with her parents, she said sure, follow her and proceeded to tell them that she is now a Christian like them, but used to be a Lutheran. LOL
2. Nettie called me on the cell phone and said, "How do you change your money at the store?" I didn't understand the question so I asked for some more clarification. "You know mom, when you go to the store and get more money, do you use a credit card?" NOW I get where this is going. I explain that the money I get out is from our bank and it's not free money I asked her what she had wanted to do. "I was going to go to the store and exchange my $4.00 for $8.00 but they wouldn't let me." Can you imagine the look on the cashiers face when she asked them to do that?!!
3. Cody announced that he is a "Spiderman, badman catcher" as he walked around the house with my bra on and socks on his hands pulled upto his arm pits.
Ok, that's it for now, Cody is crying. Seems he has bumped his head.
Take Care and God Bless,
Renee
Tuesday, July 15, 2008 1:48 PM CDT
Hi everyone!
Well, things have improved some since the last update.
Joshua is well finally! As a matter of fact, he is doing great! He is pain free and even better, he is seizure free right now!! He hasn't had a single seizure in over three days! What a blessing. He hasn't worn his helmet now for over 3 weeks (since the day he started the depakote) and we increased one of his meds a tad and the staring and aphasia seizures have also stopped. I am so pleased. We do have to fight wit him a bit to go to his Read 180 program but he's doing it and seems fine once he gets home LOL.
Tray continues to do great! He went off to camp and had a fantastic time. He has one more camp this summer, Hope with Heart down by NYC.
Annette's g-tube, though still leaking, is doing better. We have found some solutions to keep her skin from breaking down and now it's more of an annoyance than a painful problem. So we are waiting out the next month to see if in fact, we do need to have the hole surgically closed. I'm thinking there is a chance we wont have too! Other than that, she's doing great.
Marriela has had a small increase in her meds and she is doing better. She loves her summer school program and so do I! She thrives on structure and when she doesn't have a bus to wake up and prepare for, she's a mess. She is doing lots of fun stuff at school and comes home all smiles. Her excema is doing great now and we are back on track with her asthma as well.
Cody and Sergio both got worse and worse. Off to the doctors went Cody and Sergio. The doctor said that Cody sounded way worse than Sergio when she listened, even though Sergio sounded terrible to me! If Sergio sounded like Cody she would have admitted him! So onto the high dose steroids went Cody (oh what a joy those steroids are! NOT). He is still sounding cruddy, but much better than he was. Sergio went on a slightly higer dose of steroids and more nebulizers, but he has yet to make the big turn around that Cody has. He also ran a fever last night and when his motrin wears off, he just cries and cries and bangs his head. I'm fairly confident that it's his sinus' but, since he had a cold, they will make me wait for 10 days to prove that it's not just a virus before they treat him with anything else. So, we'll just wait it out. But, it makes for some very, very long nights doing all of the nebs, meds, feedings, and monitoring of his O2 levels. We're waiting for the nursing to kick in in a few weeks. If he doesn't improve considerably in the next few days, we'll have to reschedule his surgery for next month. Sigh.
I thought I would add some of the things my kids have said lately that have cracked me up.
1. Nettie was being followed by a couple of young men who were representing the Mormons, he wanted to know if he could talk with her parents, she said sure, follow her and proceeded to tell them that she is now a Christian like them, but used to be a Lutheran. LOL
2. Nettie called me on the cell phone and said, "How do you change your money at the store?" I didn't understand the question so I asked for some more clarification. "You know mom, when you go to the store and get more money, do you use a credit card?" NOW I get where this is going. I explain that the money I get out is from our bank and it's not free money I asked her what she had wanted to do. "I was going to go to the store and exchange my $4.00 for $8.00 but they wouldn't let me." Can you imagine the look on the cashiers face when she asked them to do that?!!
3. Cody announced that he is a "Spiderman, badman catcher" as he walked around the house with my bra on and socks on his hands pulled upto his arm pits.
Ok, that's it for now, Cody is crying. Seems he has bumped his head.
Take Care and God Bless,
Renee
Friday, July 18, 2008 10:22 AM CDT
Hi everyone,
We’re back from our trip to Glens Falls and it was nice. I can’t say wonderful, as Sergio only slept for 3 hours Saturday night. He was beyond miserable. I bought some cold medicine and that seemed to help and he was great at the picnic all day Sunday. We came home on Monday and he did well until the night. Then we started all over. I had just had them at the doctor on Friday so I didn’t want to run him right back in. . .
Fastforward to Wednesday. . . Joshua has IVIG and we are running late as usual. Joshua starts screaming his belly is hurting really bad. I tell him that he HAS to get dressed and we’ll see what the doctors at the clinic can do to help him. It was Déjà vu all over again! UGH! I finally get him in the car but he is not going to take his meds. I call the clinic and tell him that we need IV pre-meds and to let his doctor know we’re having an issue. I drop off three at my sister-in-laws amongst varying levels of protest and race to get Joshua there as he is screaming he can’t take it anymore. I unload Sergio and all of his stuff and beg, plead and drag Joshua across the parking lot to get him inside. We finally get into 5C, they take him straight back, seen by doctor, suggest trying Tums before taking his seizure meds (which are in my pocket), move him to an infusion chair, wait for the Tums and his IVIG. Pain starts again and he is beyond agony. . . and then vomits all over. He feels a bit better for a while. Speak to doctor and neurologist who begin to question if these belly aches are actually a type of seizure. What the heck lets give him a dose of meds that stop seizures called Ativan. We’ve used this at home, but have only given him 2mg and he slept for 8 hours. They gave him 4mg IV. He was in a coma for the remainder of the day. When the IVIG was done, his stomach still hurt (so it wasn’t a seizure) and he had profound diareaha while asleep on the toilet. Did I mention that Sergio was virtually inconsolable all day?! What a marathon day that was.
Yesterday, call pediatrician to tell her that I have three kids who have to come in TODAY! The third one you ask. . . Cody. He woke up for the second day in a row crying that his “bug” (our adoring word for what makes him a boy) hurts. Well, upon closer inspection it is actually the area above his bug and below his belly button. Sigh. We get a 3:00pm appointment.
Peter meets me. Joshua is looking amazingly well and Cody no longer complains of any pain. I seem to have cured them between 9am and 3pm. Works for me. Sergio on the other hand was burning up when I went to get him out of the car seat (fever free going in, boiling hot coming out). Verdicts – Joshua has a bug, Cody needs a urine sample (which he won’t give voluntarily at the office, so we have to catch it here) and Sergio has severe bilateral ear infections.
Last night, I slept from 10p to 2a. This seemed like an eternity to me compared from my previous nights! LOL At 2a, Annette calls me on my cell phone (she is upstairs and I’m down on the couch until Sergio gets nursing) to tell me her belly is hurting and she has “the runs”. Load her up on Immodium, back to bed. At 2:22a, Sergio awakes screaming. Give him Tylenol, numbing ear drops, rock him, sing, pray and rock some more. He’s inconsolable. The more he cries, the more secretions he makes, the more I have to suction him, which makes him cry more. This went on until 4am at which time he was now due for his Motrin (added some benedryl as well to try and dry up his poor nose so he could breath). Back to sleep until 6:30a when Marriela asks me if she can have brownie bites again for breakfast. You read that correctly, again. She seems to know what I’m at my weakest point and hits me when I’m down. “Of course honey, you can have brownie bites for breakfast as long as you sit and don’t so much as breath loudly, you can have anything you want.”
BUT. . . Sergio woke up today with an amazing smile on is face and a giggle. Joshua is poop free and Cody has had no pain. Marriela made it on her bus without incident and I actually drank a cup of coffee uninterrupted! So it’s been a great day and the reason I love being a mom. But you really question yourself when you’re seriously sleep deprived and no one seems to be able to stay healthy for more than 24 hours!
Here’s to an uneventful and restful weekend.
Take Care and God Bless,
Renee
____________________________________
Hi everyone!
Well, things have improved some since the last update.
Joshua is well finally! As a matter of fact, he is doing great! He is pain free and even better, he is seizure free right now!! He hasn't had a single seizure in over three days! What a blessing. He hasn't worn his helmet now for over 3 weeks (since the day he started the depakote) and we increased one of his meds a tad and the staring and aphasia seizures have also stopped. I am so pleased. We do have to fight wit him a bit to go to his Read 180 program but he's doing it and seems fine once he gets home LOL.
Tray continues to do great! He went off to camp and had a fantastic time. He has one more camp this summer, Hope with Heart down by NYC.
Annette's g-tube, though still leaking, is doing better. We have found some solutions to keep her skin from breaking down and now it's more of an annoyance than a painful problem. So we are waiting out the next month to see if in fact, we do need to have the hole surgically closed. I'm thinking there is a chance we wont have too! Other than that, she's doing great.
Marriela has had a small increase in her meds and she is doing better. She loves her summer school program and so do I! She thrives on structure and when she doesn't have a bus to wake up and prepare for, she's a mess. She is doing lots of fun stuff at school and comes home all smiles. Her excema is doing great now and we are back on track with her asthma as well.
Cody and Sergio both got worse and worse. Off to the doctors went Cody and Sergio. The doctor said that Cody sounded way worse than Sergio when she listened, even though Sergio sounded terrible to me! If Sergio sounded like Cody she would have admitted him! So onto the high dose steroids went Cody (oh what a joy those steroids are! NOT). He is still sounding cruddy, but much better than he was. Sergio went on a slightly higer dose of steroids and more nebulizers, but he has yet to make the big turn around that Cody has. He also ran a fever last night and when his motrin wears off, he just cries and cries and bangs his head. I'm fairly confident that it's his sinus' but, since he had a cold, they will make me wait for 10 days to prove that it's not just a virus before they treat him with anything else. So, we'll just wait it out. But, it makes for some very, very long nights doing all of the nebs, meds, feedings, and monitoring of his O2 levels. We're waiting for the nursing to kick in in a few weeks. If he doesn't improve considerably in the next few days, we'll have to reschedule his surgery for next month. Sigh.
I thought I would add some of the things my kids have said lately that have cracked me up.
1. Nettie was being followed by a couple of young men who were representing the Mormons, he wanted to know if he could talk with her parents, she said sure, follow her and proceeded to tell them that she is now a Christian like them, but used to be a Lutheran. LOL
2. Nettie called me on the cell phone and said, "How do you change your money at the store?" I didn't understand the question so I asked for some more clarification. "You know mom, when you go to the store and get more money, do you use a credit card?" NOW I get where this is going. I explain that the money I get out is from our bank and it's not free money I asked her what she had wanted to do. "I was going to go to the store and exchange my $4.00 for $8.00 but they wouldn't let me." Can you imagine the look on the cashiers face when she asked them to do that?!!
3. Cody announced that he is a "Spiderman, badman catcher" as he walked around the house with my bra on and socks on his hands pulled upto his arm pits.
Ok, that's it for now, Cody is crying. Seems he has bumped his head.
Take Care and God Bless,
Renee
Tuesday, July 8, 2008 12:37 PM CDT
Oh my,
We’re in “MASH” mode right now. That’s what I call it when I’m more nurse/doctor than mom.
First, I spend 5 days in the hospital with Joshua (between 2 ½ in the ER and 2 ½ admitted).
Next, Sergio arrives and I have spent the past 2 days trying to organize, order and restructure his schedule to more match our lifestyle. Then we visit with ENT and establish quickly that he NEEDS the ear tubes very much so, and theye’re also going to do a sedated hearing test, and an upper airway bronchoscopy to check his airway and vocal cords for any signs of damage from his long time on the vent in the NICU. While under, he will also get an impression of his blind eye made so they can make a prosthetic for it to match his other eye. He’ll be under for over 3 hours! My anxiety level about that is through the roof! He better do well and plan on coming home the next day or I’ll have to have a few words with him. LOL
Now, Cody gets sick and has a definite upper respiratory issue causing some pretty bad breathing issues. Doing nebs every 3 hours and praying it passes over Sergio. I’ll have to take Cody in to the ped if he gets any worse between tomorrow and Thursday for oral steroids, because we’re suppose to be going out of town on Saturday for three days!
Followed by, Marriela who cried all day that her tummy hurt. She ate well, but repeatedly states that she is hurting. Add to that her excema is OUT of control! Starting the steroid cream tomorrow morning to get a handle on it.
Mix in Nettie’s g-tube issue that has been going on for over 3 weeks. Finally seem to be making headway here though, even cancelled the appointment with the surgeon’s office because they made it clear that we won’t be going to surgery until at least 2 months have passed. Her skin is looking better with me and her nurse changing her dressings every couple of hours.
The only one not needing any real nursing/doctoring is Tray! Alleluia on that one, but I need to hush, ‘cause I’ll jinx myself. LOL
Joshua and Marriela have been going to their respective summer programs and seem to like them. Joshua’s is more intense than his normal school year program so it should be really good for him. I don’t know if he’ll agree on that one or not. LOL
Ok, that’s it for now, it’s almost midnight and I have to go fight with Sergio’s sat monitor. . . I’m confident, I’ll lose.
Take Care and God Bless,
Renee
------------------------------------
Hello once again. I went to post the update below and we had some major issues arise and never got the chance to get it up.
Here’s the most recent drama. As I mentioned below, Joshua was having belly issues. By this past Wednesday he was in agony and had completely stopped eating and drinking. I had taken him to the pediatrician who had ordered a CT scan of his belly for Thursday morning but Peter and I really felt that he needed to be seen sooner so off to the ER we went. We waited 3 ½ hours to be seen. By that point his lips were cracked and bleeding and his tongue was white (signs of severe dehydration) and we were rushed back to get him some fluids. The doc that came in felt that it may be his gall bladder and did a quick ultrasound where he did in fact find some gall stones. So upstairs to the big ultrasound machine. That machine also thought it saw some gall stones so now we go back to the ER and wait for the next test called a HIDA scan. Marriela had this prior to her gall bladder removal so we knew what they were looking for. Off to the HIDA scan at 11:00 am the NEXT day (still in the ER) where we spent the better part of another 3 hours. We return to the ER where they pronounce him good enough to go home on pain pills as long as he can keep some food down. So we give him a hamburger and he doesn’t puke. Home we go with some Vicodine and an order to call surgery on Monday to schedule a gall bladder removal. We were discharged at 4pm on Thrusday (yes, 21 hours after arriving at the ER) and by 10am on Friday he was screaming in pain (on the pain pills) and vomiting so back to the ER we go. This time the surgeon comes in to tell us that they don’t think it’s his gall bladder at all and that they feel he has a stomach infection. His potassium is low from all the stool he was loosing and didn’t wake up for the entire time we were in the ER. We were admitted to the hospital and they put him on a strict “no oral intake” order. He had everything, including all of his meds put in through his port. Yesterday he was allowed clear liquids, which he did well with, but didn’t take in enough to go without the IV support. This morning they allowed him some soft food and turned off the IV. He kept down the oatmeal and drank a bit. At lunch he had a hamburger and he did well so we came home at 6:00pm on a strong reflux med called Protonix and have to time his evening meds with it so we don’t aggravate his stomach lining. He seems to finally, after 2 weeks, be on the mend.
During this time, poor Nettie has been suffering tremendously due to her g-tube removal. It just keeps leaking caustic liquid which is eating away at her skin and causing her great pain. Yesterday while visiting Joshua the doc took a look and suggested taking her to the ER as well to see if they would just sew up the remaining hole. So off to the ER AGAIN for another 3 ½ hours (I so needed a shower by this point!) to only be told that there was nothing they could do and to call the surgery people first thing Monday morning to have it surgically closed. But, the nurses on the floor were incredible and they worked so hard trying to find a solution to her poor skin. I can’t thank them enough for dedicating so much time and energy to a child who wasn’t even a patient on the floor! In the end, we found a special covering they use for skin ulcers that we put over the sore areas and lo and behold she is pain free today!!!!! Thank God for that small blessing. I will call tomorrow for an appointment ASAP to get the hole closed, but at least now she’s not crying in agony until it gets done.
Due to Joshua’s admission, we weren’t able to go get Sergio, so tomorrow is his big homecoming. I’m picking him up at 10am and will take lots of pics as he comes home for good. I have missed my little man tremendously. But, a huge amount of credit goes to the foster mom and dad for being so understanding. They had been planning this out of town visit for months over the Fourth of July weekend and we were suppose to have him so they could enjoy it. But, as you know, that’s not what happened. Without a second thought, they just took him along with them. They are wonderful and I hope to keep them in his life if they will allow it.
The rest of the kids are great. Tray had a blast at camp, as did Marriela. Even Cody got the chance to experience Jr. Good Days because they were so top heavy with counselors they invited him to join them on Wednesday and Thursday. He had a blast and was immensely helpful to have them all at camp as I was dealing with Joshua at the hospital.
Well, it’s late and I really need to get some sleep finally.
Take Care and God Bless,
Renee
______________________________________________________________________
Hello everyone,
I am so sorry that so much time keeps lapsing between these updates! I really try but am busier than ever right now. LOL
First, the stomach bug enjoyed a nice lengthy stay with our family. Apparently we’re a friendly crew and the bug really was having a grand ole time here. First to be visited was Cody a week ago this past Friday. He awoke to vomit all over the bed several times. I, the ever nurturing mom, who had planned for 2 months to visit my mom the next day, put my ailing child in the car and gave him benedryl to help him sleep and settle his tummy. He actually only got sick one more time on the thruway and was fine the remaining weekend. Tray was the next party location for the bug, but he must not be to hospitable, because he was literally only sick (looked terrible and had a belly ache) for 4 hours, and then he was fine! Next to be visited was mom, yep, me. No vomiting, but the pain was terrible! I felt like there was barbed wire in my stomach for 2 ½ days!! Then it was gone. Next to have lovely time was Peter, as he came home from work, Joshua looked at me and said, my belly hurts! Those two offered each other comfort upstairs. Then Marriela started yelling about her belly. The good news, I suppose, is that no one else had any vomiting. Sergio and Annette seem to have completely missed it and we should be clear of any more tummy miseries for a while now.
Well, this Thursday Sergio will be with us forever and ever. He is here for a two day overnight and had a fantastic night last night. He’ll go home on Monday for two days to get his last days of therapy there and then on Thursday I’ll be picking him up for the last time and bringing him home. YEAH!!!
He’s doing very well now, but last week had a hard time with lots of wheezing and low sats. So he had to have his steroids kicked up quite a bit to manage the episode. He’s back to his baseline steroids now and are going to work hard to continue the wean as he tolerates it. He’s also doing some wonderful weight bearing on his legs when I hold him and can almost pull to sit from lying down with you holding his hands. He will vocal play with you, trying to copy the “huh’s” you do or the raspberries, etc..
The rest of the kids are doing well.
Annette has big news to share! She is g-tube free after 14 years!!!!! We took it out last Friday and have been patiently waiting for the hole to close. However, in the mean time, as it leaks, it is causing her a great deal of pain and burning. We’re working hard to try and find a suitable solution that doesn’t leave her so raw and sore. But, it’s almost closed so I think she’ll only need to be patient for a few more days to a week. She is just thrilled to have this reminder of being “sick” gone forever. Annette really is my hero. She never, never, complains and has been through so much in her lifetime, much of which she has blessedly forgotten. But, her tenacious spirit was never dampened no matter how much they did to her or how many times they told us it was the end. And now, g-tube free, Annette is ready to face the next set of challenges the world is ready to throw at her!
Joshua has started his Horsemanship Camp at Arise at the Farm on Friday. He was reluctant to go when we first dragged him out of bed, but once he got moving and a shower, he was more amendable to the idea. He had a great time. Unfortunately he did have a couple of seizures, but apparently nothing that freaked them out too much because the health director didn’t call me until lunch and they happened in the AM. He will miss Monday due to IVIG but will get to go for the rest of the week. We are now looking at a study with a new drug called Frisium to try. He’s still struggling with fatigue and lack of appetite with this new med, Depakote. It’s suppose to make you hungrier, but he’s eating very little now and has even turned down sweets lately! We’re keeping a close on him to see where this is going.
Marriela and Tray are off to camp on Monday through Thursday. Tray is overnight and Marriela’s is day camp. They are both so happy! Both are also doing very well.
Cody is doing awesome and other than some seasonal allergies, he’s healthy as a horse!
Wednesday, June 18, 2008 6:59 AM CDT
Hi everyone,
I know, it’s been a while again.
I sit here with the wind knocked out of me. I just found out from another site of a new boy being treated here in Syracuse, that our beloved Dr. Souid has left Syracuse and returned to Syria. I had now idea that he was leaving and would have loved the opportunity to share our immense gratitude for working so very hard to save our son’s life. I am reeling from this news and just as the other mom had said “I feel like my confidence has flown out the window.” Even though we weren’t seeing Dr. Souid for anything right now, just knowing he was there if we needed him was such a profoundly comforting thing. I can only hope that he truly realizes how very, very special he was to so many, many parents and children. Not one person I know can say a bad word about Dr. Souid, not ONE. Now that’s a legacy I could only dream of leaving yet here he is living it. I wish you the very best Dr. Souid and will pray for the safety of you and your beautiful family in Syria and for peace to reign in your presence.
Please stop by and visit this new family as well, as they could use some support now:
http://www.caringbridge.org/visit/brennanborst26
We continue to struggle with Joshua’s seizures. Well, actually, right now we’re dealing with the side effects of another med we’ve added to his regime. Last Friday he started on Depakote ER. Apparently this causes the body to slow down the metabolizime of Lamictal (one of his other drugs) thus allowing it to build up quickly in the system if you don’t make dose adjustments. Well we had thought we made enough of an adjustment, but on Monday he was clearly not himself. He was unable to walk a straight line, his eyes were shaking and he kept falling asleep while talking to us and when eating. We made a pretty big reduction in his Lamictal Monday night, but yesterday he was still unsteady, though a 1000% improved from Monday. I kept him home from school yesterday, but I plan to send him today. We’ll see. If he continues to have issues, we need to go in tomorrow for labs to be sent to determine if there is something else going on that we can’t see. The good news is, he hasn’t had a drop seizure since starting the Depakote! He has had several seizures that result in his inability to respond to questions, and he sort of “wanders” in search of someone to offer him help even though he can’t tell you what’s wrong. But you can tell as soon as you look at him if he’s himself or not. I’ll take this kind any day over the other kind!
Today is Cody’s last day of preschool. I had him at Dr. Jones yesterday because he’s having a hard time with an upper respiratory crud. He’s getting round the clock nebulizers right now, but his cough is very junky. However, he was clear as a bell in the doctor’s office and his ears looked great! So we are treating this as an asthma flair and will add the steroids if necessary. After his last day of school, we are having a class picnic for the 2 year olds. It’s all rainy and yucky right now so we’ll probably be inside and not outside on the beautifully repaired playground. Figures.
Marriela is having her kindergarten presentation today and is thrilled about being on stage! Grandpa is coming as well as Sergio and she’s busting at the seams with pride about us all being there. She is complaining daily of not liking school now and seems ready to have it all over. LOL I hate to tell her that she’s going to summer school also! But, it’s only half day and much more “fun” oriented than real school, so she should like the change and it will keep her busy for 6 of the 10 weeks off.
Tray is also ready for school to be over. But, today is his class “car” race. The kids have all designed and built their own cars using household items and today they race them. He has a HUGE Kleneex box as the body of his car, so I’m thinking it may not be amongst the fastest in the class. LOL He did great (though he didn’t think so) on his end of the year math test. Without ANY help at all. . . he got a 65! Now I know that doesn’t look great, but you have to realize he has had so many things stacked against him cognitively that to see him do 65% of regular 3rd grade math all by himself is truly a miracle!! WAY TO GO TRAY.
Annette is all done with school and enjoying her days off in bed. Today she is riding with me to go get Sergio. This afternoon she is off to Casey’s Place for a few hours. It’s such a yucky day and she hates that because it means she can’t go zooming around town in her powerchair. Hopefully it will clear up later for her to get out a bit with her nurse.
Finally Sergio. We are still waiting and praying for him to arrive once and for all. Our previous agency we were working with had let their adoption certification lapse and therefore, all of the finger prints and clearance forms were denied and we had to resubmit them all through the county where Sergio resides. They are working on making it an emergency placement so that we can get in contact with the doctors that make the decision on his tracheostomy placement. He is scheduled on July 31st for surgery for ear tube placement, but will probably also have his trach done at the same time. He’s doing great though and we are loving having him come as often as he does. Just want it to be for good now and no more visits.
This weekend I’m taking Cody, Trayvon, and Annette to my mother’s house in Glens Falls. My father is going to ride with me and we’re going to celebrate father’s day and both of their birthday’s on Saturday night. Peter is going to stay here with Marriela and Joshua.
Well, that’s it for now!
Take Care and God Bless,
Renee
Monday, June 9, 2008 7:21 AM CDT
Hi everyone,
I know, I know, it’s been a while again. Things are just so busy around here all the time.
I’ll get right to the good stuff, the kids. . . LOL
Hmmmm, who should go first. . .
We’ll do Tray first this time – doing GREAT!!! He’s not liking this heat all that much, but otherwise is doing fantastic. School is almost over and my baby will be in the FOURTH grade! How is that possible? He’s made such amazing progress.
Next – Marriela, she continues with her mood swings but is happy most of the time. She’s doing much better in school since they started this nice little reward system if she holds it together throughout the day (unfortunately we get the all of the stuff she’s held in all day when she gets off the bus. . . but we’ll take the great progress at school anyday). She’s currently fixating on her birthday which is another full 2 months away! I’m going to have to keep her very busy to distract her from the time until she gets her cake LOL.
Ok, next – Cody, doing great. He got his ear tubes out about a week and a half ago and his speech has improved tremendously! He is so clear talking no and uses complete sentences all the time now, rather than the 2 word jumbles he was using not to long ago. He’s currently a huge advocate of the bathtub and is now spending about 2 hours a day in it with around 40 wrestlers, toy snakes, matchbox cars and some dinosaurs for good measure. I leave about 2 inches of water in the tub and he gets in and out at his convenience all day long. This makes it VERY hard to get him dressed since he just stripes back down to get in the tub when the mood hits him. However, he is the cleanest kid in the house now, radical difference from about 2 months ago when I almost had to drug him to get him in the tub. LOL
On wards – Annette, also doing great. She will be done with school next Monday and not sorry about that at all. She found out that she is going to go on a Mission’s Trip with our church (drum roll please) to CALIFORNIA!!! Without us. Oh how that gives me such anxiety to write. LOL. The organizers of the trip are both special education teachers and feel that as long as Annette understands that she will have to work and can follow their directions (both of which are huge yeses) then they would be offended if she didn’t go. How cool is that. They are going to do repairs on a church that one of our Pastors here in Liverpool is now heading out on the outskirts of LA. He went to CA to start a bilingual church for a predominately Hispanic population who had no local worship center. The building is really run down so our kids and adults are flying out to make repairs, buy supplies and organize the office (where Nettie will be most of the time I am assuming). Very cool for her.
Let’s see, next is – Joshua. He continues to have one to two drop seizures a day again and out of frustration I have requested a home health aide to come and shadow him after school and a bit on the weekends. When summer comes we’ll get 5 hours a day to help monitor him and inform me when he has gone down so I can swipe him. The HHA can’t actually give him anything or treat him, but they can be with him whenever he’s outside, can walk with him to the library or playground and can go with him to his reading program over the summer. This will be such a huge relief for me to know that he has some supervision and won’t land in the middle of the road, on the concrete patio or some other equally dangerous place, without someone with him. Other than that, however, he’s doing really well! He’s happy school is almost out and doesn’t know yet that he’ll be going to a reading program for 6 weeks this summer (LOL). I figure that was a “know as you go” type thing. I know, what a meanie I am.
And last, but so certainly not least – Sergio! We were suppose to have him all day yesterday, but he got sick. He has another ear infection (can’t wait to get those tubes in!) and when he has a fever, he needs extra steroids. He doesn’t make any of his own cortisol which is the hormone that triggers your body’s response to stress and helps it to regulate itself. Without it (his was totally suppressed by the high dose steroids he’s on) your body can’t regulate itself and your heart rate gets crazy, his breathing then gets more difficult and he is just very, very cranky. After church I went out with Cody to see him and make sure he was doing well and he was doing fine. The extra steroids helped to stabilize his heart and breathing rates so his oxygen levels aren’t as high now.
We were informed however, that they feel Sergio will need a tracheostomy in the near future if we are to ever get him off of the steroids and lower his oxygen needs. At first this concept terrified me, but now, after researching the process and the pros and cons, it’s clearly evident that this is not a negative, but a definite positive step in the right direction for Sergio. We are now actually looking forward to getting it over with and then getting him off of these awful steroids!
Well, that’s the whole gang. I’d share other stuff, but they take up the whole blessed page. And since the page IS all about them, I guess that’s all good then.
Take Care and God Bless,
Renee
Monday, May 26, 2008 7:40 PM CDT
Hi everyone!
I know, you must think we fell off the face of the earth. No such luck for you! LOL
First, Happy Memorial Day to all!
Second, Happy Birthday to my sister, Andrea – getting older but better by the day!
And now for the gang. This is very long, due to my deliquent updating. . .
We’ve been spending lots of time with Sergio. We have had our first overnight, which was less than a total success. The days were great but our night was terrible. He had a stuffy nose which kept him up virtually all night pulling his nasal prongs out and making his SAT monitor alarm all night long. In addition to that, his large O2 tank in his bedroom was completely empty when I went to hook him up for the night! No idea how that happened, but now it’s turned off whenever he’s not back there. Then, his SAT monitor wouldn’t work from 3am on so I had to switch him over to ours for the rest of the night. . . which meant looking for it, dusting it off, finding all the wires and hooking it up to his little foot in the dark. To top the whole eventful evening off – Cody had an awful earache which caused him to awake screaming about every hour or so. So I spent most of the night running from child to child (different floors of the house) to comfort one or the other.
The next day was better, but we spent 3 hours in the ENT’s office for Cody’s pre-op appointment. But in the end, we found no reason for his earache other than the blood clot that could be pulling on his ear canal, he’s cleared for surgery on Wednesday, and Sergio now will have an expedited appointment with surgery for ear tubes before the end of summer – thank you Dr. Mortelliti!!
Then it was home to spend with the rest of the kids. I was so tired and they had no school so we pretty much vegged out and waited for Sergio’s foster mom and dad to pick him up as I prepared a less than glamorous meal of fish sticks and tater tots. Hmmmm. We need a routine here! LOL
Everyone is doing well.
Nettie had a short lived cold, but is much better since her IVIG infusion. Next week she goes to clinic but other than that, she’s been golden. We finalized her IEP for next year and due to her no longer having nursing after the summer, she’ll move to a 2:1 teacher aide to assist her with her academic classes and to supervise her walking and transfers. She is excited about going to school with no nurse next year and she is so looking forward to “growing up”.
Cody gets his old ear tubes out, his clot cleared out and new tubes in this Wednesday. They’re also doing the MRI so we should be there a bit longer than usual, but nothing too bad – just for the day. His last day of speech therapy is June 17th and then he’ll officially graduate from his last remaining therapy. He had OT, PT and speech between the ages of 15 months and 27 months (one year) and now he’s graduating out of his last one. We’re so happy that he’s doing so well and are looking into different programs for him for next year that will continue to offer him lots of stimulation and monitoring of his speech and language skills. He’s sooo smart it’s amazing to hear him speak sometimes, as it is so appropriate. Especially when he walks by and tells his brother to “shut up” and yells to his wrestler character he plays with “that bad guy is full of crap”. I’ll give you one guess where he’s learning all of this from. The joys of older brothers!
Tray has a hoarse voice and we aren’t sure what that’s all about as well as a terrible cough, but only in the morning. I’ll ride it out a bit longer to see where it goes, but he’s fine otherwise and it certainly hasn’t affected his appetite! His IEP will stay the same and we hope to continue to see the great academic success he’s having this year. Despite his attitude, he’s really doing well in light of all he’s been through in his lifetime. He won’t have the luxary, like Joshua and Annette, of staying in school until he’s 18, so he really needs to pull his academic weight to get a diploma for success in his future. He’s well on his way to that goal, here’s praying it continues!
Joshua has actually seen a nice improvement in his seizures the past few days! He had a terrible run the last few weeks and had a big seizure right in front of me at his baseball game. I had just taken his regular helmet off to put on the batting helmet and while adjusting the chin strap, he fell straight backwards. He was ok and didn’t hit anything but nice soft grass, but the team bench was only inches from his right side. Scary! The Carpenter has been here most of last week and we now have half a door up at the top of the stairs and a half door leading into our step down back room, so no more worries about falling down stairs during a seizure. Yeah! Nettie’s railings should be up by Tuesday afternoon. Then we focus our energies on getting Joshua’s bathroom finished. We had Joshua’s IEP conference last week and he was approved for a 1:1 male teacher aide in addition to his full time sign language interpreter. The sign lang. intrep. has to stand at the front of the class to sign, so when Joshua seizes he falls out of his chair or to the ground before she can get to him, now the aide will be responsible for all of the safety related issues and the interp. can just sign which will be much better for Joshua. Joshua has also been approved to attend a program called “Read 180” for 6 weeks this summer. It’s for an hour and a half and they’ll bus him too and from every day. He’ll also go to Casey’s Place 2 x a week throughout the summer as well.
Marriela is doing well. We had her IEP conference and I was so surprised to see how well she did on her testing. Not that I question my child’s amazing brain power, but to see it reflected on paper was an added bonus. In fact, she did very well despite some very poor skills in fine motor and, as we all know, attention span. She would have had even higher skills if she had just listened to some of the questions more carefully, but apparently she tried to literally talk through the entire testing sessions!! This is her defense mechanism and when finally told she couldn’t talk so much she broke down and cried and refused to go back to the testing. LOL With the help of some bargaining power and little prizes she finally finished and we were all pleased with her scores. However, what wasn’t addressed sufficiently was her behavioral and emotional issues. Marriela relies heavily upon her aide at school to get through the day emotionally, she has many “booboos” that need tending too (this is another stress related issue) and frequently breaks down in tears throughout the day. So she was approved for summer school to maintain some semblance of normalcy for her this summer and she is going to be monitored closely next year to be sure she doesn’t need a more intensive aide assignment than what she has now. Overall she is doing well!
And I’ve already reported on Sergio. What I didn’t tell you was all of the amazing skills he has shown us during his visits. He has mastered all of his new toys here at our house, he knows how to follow basic directions and even systematically tested a new little choochoo train out to find his favorite button which caused the sound he liked. He recognizes me readily now and LOVES Peter’s beard. Tonight, while bouncing him on his lap, Peter said “wait, wait” and Sergio stopped his bouncing and waited for tickles each time! He’s very smart, and is going to go far despite what his doctors had predicted. We’re going to make sure of that.
Peter and I have been working to get the house readied for the summer. The pool is open (though not usable after our terrible summer of pea green soup last year) and we’ve been assured that it will be good to go within a week or so of treatments. The picnic table is out, the grass is mowed (that was fun for Peter – mowing down 6 in. grass! LOL) and the shed has been cleaned out. Marriela is learning to ride her bike and Tray is psyched up to learn to ride his this summer as well. Camps, summer school, Read 180, Vacation Bible Schools and Casey’s Place are all just around the corner. Gas is killing us, as I have to transport the kids to virtually everything, but it is so worth it to keep them happy and busy for those LONG 10 weeks.
Till next time,
Take care and God Bless,
Renee
Monday, May 5, 2008 7:06 PM CDT
Hello everyone,
A Happy Mother’s Day to all of the Mom’s of the world. Being a mom is the greatest thing in my life that I have ever done, or will ever do. I am amazingly blessed to be the mother of my 6 wonderful children and each and every moment of my life is defined by their needs. For some, that’s a distressing fact, for me. . . Something to be celebrated. Sure, I get irritated, short tempered (especially when I don’t get my 8 hours of sleep, or a morning coffee - decaf hazelnut extra cream and sugar) and sure I yell (way more than I should I suppose). But, I also get daily doses of kisses, “I love you’s”, offers of help and art work that’s better than any Rembrandt could give me. My kids surprise me every day with a new skill or a new concept they didn’t have just 24 hours earlier.
(Oh my goodness, I just forgot about my other job! The tooth fairy - Tray lost a molar the other day and I was AWOL on the TF role! UGH)
See, I definitely have shortcomings as a mother! LOL
Yesterday was spent enjoying, absorbing and basking in the love of my children. I slept in until 7:30 (and yes, this IS sleeping in for me!) and then came downstairs to a cup of DD coffee and a newspaper. Then I opened all of the homemade (school) gifts from the kids. Nettie made me a homemade vase with cookie “flowers”, very cute, and she wrote me a wonderful card. Joshua planted several pots of herbs and a large pot with a flower “yet to be discovered”. He also made a beautiful homemade card. Tray created an awesome “Mother’s Day Book” and I learned that my favorite car is a station wagon, my best meal is a chicken wrap (little does he know these come from McD’s) and my favorite color is blue. I loved learning about all of my ‘new’ favorites that I didn’t even know I had. Marriela made me a wonderful little teapot out of paper and it had a teabag inside with a cute poem. She also made a nice card. Cody made me a beautiful card and a poem with his handprints. And last but not least, Sergio gave me a beautiful card that Maryanne had helped him pick out. The love was tremendous and it was so cute to see the excitement in their eyes as they watched me open their special gifts.
Peter then shared his and I was soooooo excited to find a new digital camera in a shoe box!!!!!!!! I LOVE taking pictures and scrap booking, and last summer, my old camera bit the dust. Since then, I’ve been using disposable Aldi cameras and our camcorder, neither of which take very good pictures. So to see a new, 10 mega pixel camera was just so wonderful. I’ll download my new pictures in the very near future!
Then we all went to Church and after that, off to the Cracker Barrel for my favorite breakfast (Uncle Herschel’s Favorite). Then we took a nice ride before returning home to do Annette’s new braids. It was a nice and relaxing day and I am still happy to be a mom. LOL
Well, I’m going to just leave it there for now. I’ll update on the kids very soon. Nothing new or exciting, just the same old crud, different day for Joshua, but the rest are doing great!
Take Care and God Bless,
Renee
Friday, April 25, 2008 2:49 PM CDT
It is with a very, very sad heart that I ask you now to support Mira's family with your prayers. Mira is happy, healthy and pain free in Heaven with Jesus. Her pain is over, but her family. . . well, you can only imagine. Thank you to those who have stopped by to offer their support, the family really does feel the love.
R-
www.caringbridge.com/visit/mirabrouwer
Hi everyone!
First and foremost, I need you to send you prayers and support to a little girl battling the fight of all fights. She is in Florida, on what was suppose to be a vacation, in the PICU of a strange hospital, with strange doctors dealing with unbelievable hurdles. She's local and in need. Here is her link:
www.caringbridge.com/visit/mirabrouwer
Thank you.
Second of all, I added some new pics to the photo page. I'll do a better job someday LOL.
As for my gang. . . a few ups and downs the past few days. As you know, Joshua broke his hand. He's doing well with that and now only has a small hand splint to protect the side he broke. However, as we were getting ready to leave for the hospital for his hand clinic appointment and his IVIG, he had a big drop seizure and fell straight back onto the wheelchair ramp. His helmet went flying and he was out of it for a bit. He was ok after a few minutes so off we went, the rest of the day went well. Then yesterday, I took him in late, as I already had an appointment at his school at 9:30 am. He did great, no seizures. That afternoon, he was sitting at the computer and I noticed him having one as I came down the stairs. I swiped his magnet. A few minutes later, Tray announced he was having another one. . . that's not normal. I swiped him again. A moment later, another one, then another. By the time I got the doctor on the phone he was on 28 and that was only the ones I had actually seen, I don't know how long this had been going on. The doc called in a STAT order of ativan so I threw him in the car and off to the pharmacy. He had a total of 60 in the hour and a half between the time I called and the actual meds started working. Theory is that he fell hard and hit his head with the seizure the day before, resulting in a mild concussion. . . he has also been sleeping a lot. This resulted in the cycle of seizures. The theory is plausiable enough to me, but I'm glad we have the rescue meds on hand now.
What I didn't say yet is that I was suppose to be at a fund raiser we had planned to support the position of Parent Advocate at the Ped hem/onc unit. The hospital is no longer going to financially support the position and we feel it is a vital part of the treatment process. EVERY time I plan to leave for something, SOMEONE has an issue! Without fail! LOL I did finally make it late and had a very nice time. It was very well done and very relaxing and though it didn't raise all the money we needed, it made a wonderful start to our project.
Tray is my next little glitch. He's now had 2 migraines in one week. I have a call into the pediatrician to get him either preventative or rescue meds for him. It's so hard to watch him writh in pain and vomit for hours. I know we can either prevent them all together or we can at least, stop it much sooner than we are now.
Ok, next. Sergio. . . Cody and I went out yesterday to spend the day with him. I did his g-tube feeding, gave him a treatment and cuddled with him until he fell asleep on my lap. I can't wait until he comes. Cody was so soft, gentle and loving to Sergio without any prompting on anyone's part. He has such a kind heart.
Cody. . . he saw ENT today and he needs to go back to the OR. Both tubes are completely blocked, one has a huge and disgusting clot attached to the ear drum and the other side has an infection starting around the tube itself, a sign it needs to come out. While asleep, they're going to arrange an MRI of his sinus', eye sockets and brain. This is to just, once and for all, rule out anything big, bad and ugly that may be causing his eye pain that he continues to have almost daily. We don't have the date yet, but I'm thinking by the middle of May we should be all done.
Marriela is doing ok. She is having a hard time coming off the bus again. I don't know how to help her with her anger, frustration and overall moodiness. She is very distressed about daddy being at work when she gets home and that is definately a stressor for her. I think over time, she will acclimate to the new schedule. I PRAY she does! LOL
And last but definately not least, Annette. . . she is doing great and spending the weekend at Casey's Place with her best bud, Missy. She did have to miss two days of school this past week due to a terrible head cold. I never saw anyone sneeze and blow so much in my life and still look so bad!! But we moved her IVIG up a couple of days and VOLIA! She was 00 better by the next day. Gotta love that stuff!
So that is the gang. Please be sure to pray for Mira and enjoy this beautiful spring weather!
Take Care and God Bless,
Renee
www.thefamilypost.com/curkendallfamily
Tuesday, April 22, 2008 7:13 PM CDT
We had a great week, lots of sunshine, lots of fun stuff to do, lots of laughs and lots of tired children. We also had a missing dog, a broken hand and a mistaken route that turned out to be a 3 mile hike for my poor dad and three kids.
Let's see, first, the broken hand. Thursday evening, after having a full day at the zoo. . . where the kids ALL complained that it was TOO HOT, if you can believe that one. . . Peter arrived home to find all of the kids asking to go to the park. Joshua begs to walk, so he can ride his scooter, daddy wanted to drive the 4 blocks. We walked. Joshua falls off the scooter. Hand is hurt. Go to Urgent Care (right from the sidewalk) where they tell us they don't take our insurance. Go home, because he is using the hand, it's not THAT swollen, and he isn't complaining of pain anymore.
Next day.
We go to Beaver Lake. Had a lovely picnic, several rousting games of freeze tag (really need to do more cardio, as I thought I was going to have a heart attack by the third round!) and waited for my dad (grandpa) to arrive. We go to the trail where Justin, the visiting nephew, and Trayvon, ask to go on the "longer trail". Now, for those of you who have no idea what Beaver Lake is, it's a set of nature trails and a wildlife conservation center. The trails range from .3m (the one I like) to 1.1m, .5m, 1.3m and 3 miles around the entire lake. Yes my friends, my 73 year old dad and 3 children, Justin, Trayvon and little Marriela, went for a 3 mile hike with no food or water. I called my dad to see where they were and he shares with me that they just passed a sign that says they have 2.2 more miles to go!!! WHAT IN THE WORLD. . . ! My poor dad carried Marriela for almost half of that blessed trail. They took 2 and 1/2 hours to do it, but they all arrived safe and sound back to our van. My dad went home to sleep for the next 12 hours LOL.
Ok, back to the hand. Now, we've been at Beaver Lake and while waiting for my dad, I decide, hey, better be safe than sorry. I call the Ped and ask for them to call in a script for an x-ray. As soon as the kids are loaded in the car (all 7) I run Annette's friend, Lindsy, home and then off to get a picture. They take the x-ray at 4:50 pm, at 5:05 I am told that it is broken. The pediatrician is not returning the calls and we need to go to the ER. BUT. . . Nettie has a birthday party for her very good friend, Missy, to go to and she lives a 1/2 hour away!
Sooooo. . . . Saturday morning, the terrible parent that I am, marches my son to the ER FINALLY, to have his broken hand looked at. It took them 4.5 hours to say, YEP, we agree, it's broken, here's a splint and on Wednesday, he has to go to the Hand Clinic and have a cast made. 4.5 hours!!
Oh yeah, the missing dog. . . It was a beautiful day on Tuesday. I had just Marriela and Cody because Joshua and Annette were at Casey's Place and Trayvon and Justin were with my dad fishing (not successfully I might add). So I let the dogs out and Peachy found a nice place in the sun to lay down and fall asleep. I left her peacfully dreaming on our back deck without another thought. I should add that she is completely blind, hard of hearing and severely diabetic. Long story short, she found a hole and let herself out for a tour of the neighborhood. She crossed our county highway (the street we live on)with the kind help of some patient travelers, who had nothing better to do, than to sit in the road and watch our blind dog find her way painfully slow across the street. I arrive home to find her missing. I go on full red alert and recruit my neice to come over and help me search. I ask EVERY person I see to look as well, and tell them where we live (yes, now every weird person in our town knows where we live) and beg them to bring her home if they find her. A very kind couple get in their car as well and start combing the streets. I had several emotional breakdowns and called the police to ask them not to arrest me as I was clearly tresspassing all over the lawns of my neighbors. 2 hours later, the kind couple arrive at our front door carrying our shaking, blind, hard of hearing dog who was past her insulin shot. She was sooo happy to be home and we were so happy to have her.
And that was the excitment of the week.
That and Tray lost 2 teeth in one night, Nettie has a TERRIBLE cold, Cody has been dealing with asthma for the past 3 days, Peter really likes his job, the teacher assistant in Cody's class passed away unexpectedly (and since I was in the ER I was deeply saddened to not be able to attend her memorial service).
We went to Elmira Sunday to visit Peter's dad and his brother, Guy and Aunt Tami.
School started yesterday, and not a day to soon for me. I need a break from the break!
That's it for now,
Take Care and God Bless,
Renee
Friday, March 28, 2008 9:01 AM CDT
Hi everyone!!
Well, it’s be a bit since we last updated and I was waiting until things were a bit more finalized to share the news.
Our site will be changing to My 6 Angels very soon. We are going to be mom and dad to Sergio in the near future. He is going to be 2 on May 2nd though he is much smaller than a two year old. He is adorable and though he has some struggles to overcome, we are thrilled he will be a part of our family and can’t wait until he arrives. The kids are also very excited, Marriela asks me daily now if Sergio has arrived. She is so very excited to have another “baby” in the house. Cody has already met him and was so gentle and kind to him and LOVED playing with all of his toys that make noise and bright lights. Below is a picture of Sergio. It is his one year picture, but he looks very much the same. He doesn’t have the monitor on anymore (the wires coming from his shirt) but he does have the oxygen still. He was born at only 25 weeks so his poor lungs need more time to get bigger and he needs to get stronger so he can get off of the oxygen. He is perfect to me.
The kids are doing well. Nettie is having her birthday party with her classmates and friends at the movies today. She is very excited! We got the news back that her sickle cell testing that she had AGAIN, was negative AGAIN. So now we have to assume she has a genetic condition that results in the issues she has with her eyes. We’ll just have to be more diligent in watching her eyes for any signs of problems. But she is doing great right now and will have her other eye surgery (laser) next Wednesday.
Joshua is at Casey’s Place this weekend. He was very excited to go. He has had a few seizures at school but no drop seizures which is a true blessing. He seems to be doing really well right now. This Wednesday he is going to have his first infusion here in Syracuse, I’m sure it will all go fine. He also had his annual physical for camp and that also went well.
Tray has a bad cough and sore throat but, it isn’t slowing him down and he’s made it through the whole week at school with no problem. I had his parent/teacher conference and there were many good things, and few trouble areas. Mainly his motivation level in two areas (centers and morning work - both of which require a lot of writing and self-motivation to complete). So we’ve put a rewards system into place in an effort to spur him on for these last 10 weeks of school.
Cody is doing great. He is doing so well in fact, that we think he’s going to no longer qualify for speech at his next evaluation in June. This is a great thing! He’s smart as a whip (too smart for his own good, I assure you).
Peter and I are also doing well. Peter is enjoying his new job and leaves on Monday for a whole week for training in Tampa. The weather is suppose to be wonderful so I hope to get a lot of spring cleaning done while Peter’s gone. (Most women understand when I say . . . “I can’t clean when he’s home!”) LOL.
Well, that’s it. Take Care and God Bless,
Renee
Sunday, March 23, 2008 4:52 PM CDT
Hello everyone!
Hope this finds you all happy and healthy on Easter. I'd like to say warm Easter, but that would be a very, very big fib. It's freezing out!
The kids waited (with our insistance) until 7:00am to come down. They really enjoyed their baskets and the chocolate and the hard boiled eggs. By 7:20 the entire downstairs was littered with toy wrappings, candy wrappings, remenants of candy bars that Cody decided he didn't like afterall and finally, egg shells EVERYWHERE! We've also learned that Cody doesn't like the yolks and has no problem dumping them where ever he is at the moment. LOL
Nettie had her laser surgery on her eyes and she did fantastic. The doctor even told her that she had to come in and sit with the guy before her, because he was a big baby and cussed him out. She found that to be very funny.
Joshua and Marriela are no worse for their flu experience and both are fully recovered. Joshua's MRI is set for this Thursday and on Tuesday, he'll be having his last IVIG infusion in Rochester. After that, we'll be doing them here in Syracuse with his Oncologist writing the orders. I'm very nervous and excited at the same time.
Tray is doing well and LOVES his scooter he got for Easter. He's been bummed since Christmas that the little ones got scooters and he didn't have one to ride around the house with them. Cody is a very poor sharer and he wasn't thrilled about having to ride Marriela's pink "Princess" scooter all the time.
Cody is doing so well, I often wonder why we really want them to learn to talk. Hmmm. He can now tell me that "he peed his pants" and then tells me to "wash them mamma." Not that last statement is not said with love and respect, it's more of a command at this point. But of course, he'll speak in those sweet, respectful tones with a bit more speech therapy. . . right?! LOL
Well, that's it. Peter starts a new job on 4/3 for a company similar to his old one. He'll be in Tampa, Fla. for the week of April 7th getting training. It's exciting and scary at the same time. I'll be home everyday now with the kids and will now have to schedule, attend and manage all of the doctor appointments without his extra set of hands. It's a learning curve for all of us and we've done it for years in the past, I've just been spoiled! LOL
Well, HAPPY EASTER!!!! Stay warm and enjoy yourselves.
Renee
Tuesday, March 18, 2008 9:50 AM CDT
Well hello from the land of the flu recovered! LOL
Marriela and Joshua have returned to school and the house is so quiet now! Cody has enjoyed his extra mommy/daddy alone time and no one competing with him for his toys anymore. LOL
We’ve rescheduled Joshua’s MRI for next week on the 29th. I thought we’d have to wait months to get another sedated MRI, but I think our wonderful oncologist had a few words for them since we had a mishap with the clinic. I’ll elaborate briefly since it’s all fixed now, but it really made me so mad.
Joshua had a fever, a couple of big seizures and we had an appointment to go to. I really hadn’t given any thought to his port since Marriela was also running a fever. However, just as we were getting ready to go to the pediatrician, I realized that since he had a port, there may be a protocol to follow regarding fever. So I called the clinic, let them know the issue and was told he definitely had to come in and have cultures drawn, they gave me a 2:00 pm appointment. About an hour later I got another phone call, this time telling me that since Joshua gets meds via his port that are not arranged through the clinic, he would have to go to the ER for his cultures. I argued briefly that he is a 5C patient and a hem/onc patient not an ID (infectious disease) patient. Apparently the triage nurse asked the ID team, NOT hem/onc if he could come in for his cultures, and they said no, he’s not their patient. The nurse never talked to his oncologist or anyone else, just told us we couldn’t use the clinic. I was soooo mad. In the end, I never did take him to get the cultures due to knowing that he had a positive flu swab and knew that was what was causing the fever. But still, I had to figure out if this was correct. . . I sent an e-mail to our doctor and she assured me that we WERE suppose to come to clinic and NOT the ER unless he was in crisis. He needs to come anytime he has a fever of 38.5 or higher regardless if he is neutropenic or not. She also apologized for the nurses behavior and the mix up and that we are always welcome to come there for Joshua’s care, just be sure I identify him as a hem/onc patient immediately. I thought I had, but as soon as I said IVIG, they immediately went to the lovely ID team who have no desire to help anyone, the doctors that is, not the nurse practitioners.
Anyway, it’s all good now and I even went so far as to ask if we could possibly move Joshua’s infusions to 5C under the oncologist. We’ll see what she says.
Nettie has her laser surgery on her eyes tomorrow. We had hoped that our pediatrician would be willing to call in a mild sedative for her, but alas, why would they want to do that, it may just help their patient. So no, they won’t. I assured Nettie that she could do this, and that her doctor would stop immediately if he felt she couldn’t and do it under general at the hospital. She feels that she can and will be able to do it with no problem. WAY TO GO NETTIE!
Marriela is still congested but she is much better and was thrilled beyond words to go to school. Did I tell you she lost her first tooth!? Yep, my little girl’s lamaa teeth are now a lamaa tooth. She took it to school today to share it with her teacher and friends and to get a “treasure chest” to put her tooth in from the nurse.
Tray is doing well. We are going to have a meeting regarding his struggles with getting his school work completed on time. Apparently (and we see this at home) if there isn’t someone right there the entire time working to keep him on task, forget him completing anything! He does the same thing at home with everything from homework to getting dressed. But at home, it’s easier than at school where there are 20 children who are all working and needing guidance and then Tray, who’s just sitting there as long as there is no adult around him. We’re going to try to come up with an encouragement program to get him to move forward with his independence.
Cody is doing great and has not been into the body work like he was. He’s really into the wrestlers now and really likes to have the house to himself! LOL
Well, that it’s for now.
Take Care and God Bless,
Renee
Wednesday, March 12, 2008 6:39 AM CDT
Friday, March 14, 2008 9:13am
Hi everyone,
Hope this finds you all flu free and happy. So far, it appears that Joshua and Marriela are the only two with it. Peter had a brief bout with some chills Thursday night, but has since then, felt fine. I have had a cold in my throat, but I think it’s going to stay just that, a cold. Thanks to the high dose IVIG, Joshua woke up this morning and looks and says he feels fine. His voice is almost back to normal and hasn’t had a fever since Wednesday. Poor Marriela on the other hand continues to spike very high temps and is very wheezy. When her fever is down and her coughing is at a minimum (like right after her breathing treatments) she feels good enough to play and ride her scooter and such. But once that fever comes on and her coughing increases, she becomes a whole different (very angry and inconsolable) child. So we keep the Motrin and nebs rolling to keep that child away! LOL Here’s praying the rest of us stay Flu Free!
Then, as if there really wasn’t enough excitement, poor Nettie’s power wheelchair, broke down. Not only did it break down, but it so on the ambulette! So Peter and the driver had to push this 300 pound chair, with Netties’ 100 pounds, up our slippery ramp to get her inside. She is very, very distressed at not having her freedom. She is reliant upon someone to push her in the manual chair and she isn’t sitting as high, so she feels uncomfortable when talking to standing people in her manual chair. Someone is coming today at 3 to look at it. Please pray that they can fix it right away and no parts or anything need to be ordered. Thanks!!
________________________________________
Well, it’s official, the FLU has hit the Curkendall house. Joshua and Marriela both have positive flu swabs. Both are sleeping right now (anyone who knows us at all, know how very strange it is to have two of our children sleeping in the middle of the day). Both are still fever free, but I’m betting my bottom dollar that both will be on fire when they wake up, as their motrin ran out around 1:30.
The doctor is going to call in the Tamiflu for the other three kids. At first, it was only going to be Annette, but I talked them into both Tray and Cody. Tray due to his heart and Cody because every time he gets so much as a sniffle, we’ve landed in the ER with a severe asthma attack. It only makes sense to me to put them all on the meds to try and prevent a more severe case of the flu.
Poor Joshua and Marriela are miserable. Marriela became delusional just after I updated last time. She kept crying and saying that her hands were too small and that everything in the house was too small. She was soooo scared! I felt terrible for her. Joshua’s eyes are just watering like crazy and both have belly aches. The doctor said the worse of it should last about 4 - 5 days!! I’m getting suspicious that he won’t be able to have his MRI on Monday.
Please pray that the other kids don’t get this and that Peter nor I do either. I have a fun weekend coming up and Peter needs to be healthy to be the care giver! LOL
Take Care and God Bless,
Renee
________________________________________
Hi everyone,
It's been a yucky day and night here. Yesterday Joshua awoke with a nasty case of croup (hasn't had this in almost a year). He had IVIG in Rochester with daddy where he felt worse and worse as the day progressed. The neurologist came in and looked at him but couldn't pin point a source of concern so we're sure it's just a virus. However, this morning, while getting some cereal, he had his first drop seizure in almost 2 months and slammed his head off of the wall causing a nose bleed. Our poor nurse was standing right there and felt awful that she couldn't catch him. I reassured her, he's done the same thing to both Peter and I and there is nothing you can do. I took his temp just to see and boy was I suprised to see he had a 102 temp!! He hasn't had a fever in almost 3 years! Joshua was suppose to go to Brain Tumor Clinic yesterday, but he felt so bad when he got home, he insisted he couldn't go. We called and cancled, but because that was suppose to be his history and physical for his MRI on Monday, we had made an appointment with the doctor for today. Didn't that work out good.
Marriela was coughing a great deal all night and we had to do several nebulizer treatments to quell the asthma that clearly wanted to rear it's ugly head. This morning she woke up her belly was hurting and when I picked her up, she was burning up. She proceeded to vomit after I brought her downstairs. She has a 102.5 temp. I have to call and add her to the caseload with Joshua and Tray at the doctors today.
Nettie had a bad bout of diarreha yesterday but seems to be fine otherwise.
Cody is doing great. To good for all of the sleeping the kids are trying to do. LOL
Tray is going to have his PPD for his camp application and then he's going to chat with Dr. Jones about his complaint (see old posts to see what we mean). I'm not worried, but it's good he gets to talk about it with someone.
Peter feels like crud, pretty sure it's his sinuses again.
Joshua, Marriela and Tray all had dentist appointments yesterday. No cavities for any of them and they all were great for the visit. Joshua has some areas of concern, but they are not cavities yet, so we have to work hard to try and get those areas better. YEAH for cavity free teeth!
Peter's dad is coming home from Florida on Thursday and then Peter is taking him home to Elmira on Friday.
Friday night I am so excited to be going to a fun "girls night out type thing" called Rock Around the Clock at our church. It's a fifties themed pampering/entertainment. Plus, there will be lots of chocolate, who can't like that!
Then Saturday, I was provided the opportunity to attend a training session to learn about Girl Friends Unlimited. It's going to be lots of fun.
Well, that's it for now.
Take Care and God Bless,
Renee
Tuesday, March 4, 2008 6:01 PM CST
Hi to all of our friends!
What a long day for poor Nettie. We had to be at the new eye doctor at 8:15. We were there 3 hours and only actually saw someone for a ½ hour!! But, we had Nettie’s nurse with us and we all had fun to pass the time. In the end, she needs the surgery. On March 19th, Annette will have laser surgery to the growing, abnormal vessels to the back of her eyes. The doctor felt strongly however, that she will do fine with the procedure without needing to go to sleep. She did a fantastic job for his evaluation and he was full of praise and support. She and I and the nurse all really liked Dr. Rutledge. Nettie agreed to the surgery if he was doing it.
Then we were off to the Immunology clinic at 5C. This was a tough visit. Annette has been devastated lately with her body. Her self-esteem is in the toilet and we are struggling to pull her out of it. She really thought there would be some magic pill or shot or surgery or SOMETHING, that would make the changes in her body go away. The nurse practitioner dealt her the awful news that there is NO cure for her body changes. Nettie just broke down in tears. I followed close behind as did her nurse, Stacey. It’s just heartbreaking to see how badly she feels about her body and how depressed she is. We called in the clinic therapist and have set up an every other week therapy session for her. This therapist is used to dealing with this and spends a lot of time working with young women and their personal perceptions of body and health and what really is normal vs. advertised. I pray it helps her. She had tons of blood work and then we were off.
Thanks for reading and please say a prayer for our Nettie. She could use so much support right now.
Take Care and God Bless,
Renee
________________________________________
Hi everyone,
Well, today is 10 years. 10 years of MRI’s, 10 years of side effects, 10 years of worry, 10 years. . . That we never thought we would have. Today is the 10 year anniversary of Joshua’s diagnosis with a highly malignant brain tumor called an ependymoblastoma. 10 years ago we were sitting in an ER with my 30 month old son, who was screaming about 2 hours earlier that his head was hurting, and who’s right foot and right arm were hanging eerily at his side. 10 years ago a greasy haired, uneducated neurology resident walked into our room, holding the CT scan we had just put Joshua through, and told us that he didn’t think our son would survive this. 10 years ago, we took our seemingly healthy (though subdued and clumsy) child up to the PICU where he underwent an emergency insertion of a tube into his head to relieve the pressure. 10 years ago we were told that, had we waited a few more hours, or transferred him to another facility, he would have died.
What a journey Joshua has had and is still on. He underwent a tenuous 15 hour craniotomy that successfully only removed 90 f tumor that was so big it occupied virtually the entire right side of his head and had pushed the left side against his skull. He developed surgical meningitis and salt wasting syndrome. He spent 3 weeks in the PICU. He underwent 5 rounds of high dose chemo and only came home for a total of 40 days spread out over 8 months. He had a stem cell transplant and set a new record, 21 days to discharge! He then did 6 weeks, 5 days a week, of radiation to his tiny brain. All of this saved him. All of those poisons and toxins, used individually in other areas of science and life as killers, were used in doses and combinations to beat a terrible thing called cancer. Joshua has been cancer free since December of 1998. Those very life savers are now the things that have altered and created havoc on his current body. His hearing is severely damaged, his pituitary gland was damaged, his immune system couldn’t recover, his brain was damaged severely due to the combination of radiation and surgery, resulting in uncontrolled seizures. BUT. . . By the grace of God, he is here to deal with all of it. He is hear to yell at me when he’s mad. He’s here to struggle with his homework. He's here to say he loves me and his dad. He's here to be the very best friend his brother ever had. He’s here. That is so very much more than many parents I know have. I will take 10 years of struggle over 10 years without my child at all. Thank you God... for the past 10 years. The past 10 years have brought many amazing, wonderful people into our lives, and out.
Congrats Joshua on your first 10 years and we'll be there cheering you on at the next 10 year anniversary baby!
Last night Tray and I went out to Rochester for his sleep study. I actually took it as a vacation, as there was a very comfy bed with no child to pee on me or to hit me in the face all night, as he flails in his sleep. There were no children calling me in the middle of the night to escort them to the bathroom, no dogs jumping on and off the bed, no meds to give, no fighting over what show to watch. Tray and I went to bed at 9:30 and sleep soundly until they woke us up at 5:45. Blissful heaven. Tray, however, had to sleep with over 40 wires, tubes and monitors attached to him, as well as three straps around his chest, electrodes taped to his face and head and a very irritating tube that curled around his upper lip. But, he did and didn’t seem to mind any of it after the 45 minutes it took to attach it all. LOL We even made it home for him to shower, finish homework and make his regular bus. Like I said, blissful heaven. LOL
I have now called 7 people and have the names of 4 more that I need to call in an effort to move Annette’s house along. It’s a daunting process to say the least and I, who knows the system pretty well, am a bit overwhelmed by it all. But, that’s a motivator to me to make this happen. Nettie has her eye doctor appointment on Thursday and then we’re off to her clinic appointment to discuss the medications she’s on and whether they need to be changed based upon the eye doctors recommendations.
Marriela’s teachers wrote several notes this week that she was not as happy as she was before. In addition, she had all but stopped eating breakfast and lunch and apparently was very dazed in school. This was all since we started the Ritalin LA. Today, because of the chaos of my return from Rochester, Peter and I didn’t give Marriela her meds. Today’s note came back that “the old Marriela was back, she was very happy and bubbly and ate her entire lunch AND snack”. That was all we needed to see. As of tomorrow, she’ll be off of the Ritalin. It is such a complicated process to find the right combination of meds that allow the child to be “themselves” and yet suppresses the behaviors that interfere with the child being able to “be themselves”. UGH.
Cody is doing great. He recovered very, very quickly from his GI bug. I have been working on getting him into the urologist out at Strong. He doesn’t accept the insurance and but the insurance is saying that they will cover the visits since there is no longer an urologist locally. He is NO LONGER a baby. He is so much a little boy it’s scary. He is learning how to make faces and talk in funny voices and play with toys in interesting ways. He is still a HUGE fan of body art and playing with any stick like item (usually in a very threatening manner). Otherwise, he’s great.
Last but not least, I should mention my other big project I’m working on.
I have developed a theory and have been working to recruit a doctor or researcher to take it to the table as an actual study. I have proposed the theory that some children have an autoimmune based epilepsy, which I have astutely named ABES (Autoimmune Based Epilepsy Syndrome) LOL. I theorize that the current vaccination schedule (NO, I am not against vaccinations, just the current scheduling of them) overwhelms immature immune systems with potent viruses and bacterias, that trigger an extreme reaction in the immune system, resulting in ABES. However, I also feel that any breech of the blood-brain barrier can induce this syndrome by allowing parts of our immune system in to an, otherwise sterile, environment. This could be brain surgery, a brain injury, or manipulation of the blood brain barrier chemically with meds (such as mannitol). The vaccination component is literally an overwhelming systemic reaction that results in high enough levels of immune cells to enter the spinal fluid and reach the brain.
I know, I’m crazy, but this is an obsession of mine right now. I have researched and researched this and can find no evidence that anyone has entertained this idea. It’s a delicate subject, as it is anytime you discuss immunizations. Again, I’m not against vaccinations at all. I just feel that we need to spread them out over time, give them as individual immunizations vs. these mega combos they have developed, and rearrange them so that only the most lethal illnesses are the ones give to infants. Unless an infant is born to a mother with Hepatitis B, is having unprotected sex or is shooting drugs, they aren’t at risk of Hep B. So why do we insist that the first of the three shots need to be given prior to their discharge from the hospital at only 24 hours old. Mind boggling to me. Same with Tetanus and diptheria. These are illnesses directly linked to specific risk factors, of which, are virtually eliminated in the infant stage. So why do we give the potent toxins to them as infants rather than wait for their immune systems to mature?
Anyways, my study would focus on ABES and a potential treatment that involves immunosuppression. I feel, with all of my heart, that there is a cure for my son’s seizures. But, need guidance and support from the medical community to support that cure. Still looking.
Ok, that’s it for now.
Take Care and God Bless,
Renee
Thursday, February 28, 2008 3:22 PM CST
Well hi there everyone!!
We managed to escape the big snow storm we all had anticipated, YEAH. . . No snow day. LOL
Yesterday Joshua and I went to Rochester for his IVIG and all went well. We got it all done in about 3.5 hours, a new record! His port access went great and he was in a great mood for most of the infusion. He did have a lengthy seizure in the van on the way up, and I felt so bad because I had forgotten his magnet. He would just keep looking at me with a blank stare and crooked smile and say “I’m all right.” When I asked him questions like, “Is the sky purple?” he would answer, “yah” over and over. It lasted about 5 - 7 minutes and then he started coming around. I knew he was back when I asked him “Will you marry me?” and I saw the look of recognition in his face and he slowly said “no way!” Gotta love em.
Cody awoke us last night with the wonderful screams of tummy pain and then proceeded to poop right through his diaper at 3:00am. He did it several more times and once awake and downstairs, the messes just got bigger and bigger! However, he had his last dirty diaper about 10:00 am and has been a wild many since. Hopefully that is all there is going to be of that nasty little virus. I’ve been fighting with our insurance co. to be able to go back and see the urologist. Cody is suppose to be seen every 6 months and we no longer have a local urologist (she has moved to another hospital in another state). Dr. Hulburt has recommended following Cody’s neurogenic bladder every 6 months with an ultrasound and an appointment with him. Today we seem to have made a break through and hopefully tomorrow I’ll get the call that we can make the appointment. YEAH.
Marriela is doing great. I anxiously await the results of all of her testing at school. Her last testing gave her an IQ of only 50, but we know that was wrong. The tester was terrible with young children and Marriela was just so interested in all of his toys and NOT the test item at hand. So we shall see what she comes up with almost 3 years later. Overall, she is doing well in school and her medicine combination, at this point is a very good one.
We got a call the other day from the school regarding Trayvon. He was in the nurses office following a minor incident with another student. Apparently he was singing the song “K-I-S-S-I-N-G” to a little girl. She got upset. When the teacher spoke to him to tell him that he needed to stop, Tray announced that he didn’t want to live anymore and that it was the voices in his head that made him do it. That was enough to freak them all out and down to the nurses he went. I have since spoken with him and he does consistently report that there are voices in his head. However, I feel strongly that these “voices” are more his “thoughts” and he just doesn’t like to get in trouble, so this was a ploy to take the attention off of the issue and onto something else. We are going to take him to the doctor anyways, as a precaution. If she finds something worthy of concern then we’ll have her refer him to the appropriate specialist.
Nettie continues to do well. She’s mad at me because I won’t let her spend her hard earned money on tube tops from Old Navy. I don’t let her wear tube tops to begin with, and I certainly am not going to let her spend her money on something she isn’t going to be able to use for another 4 - 5 months (that’s if I were to actually allow her to wear them at all). So she’s mad at me. First, I’m telling her what she can spend her money on, second, I am telling her what she can and can’t wear. Bad, bad mommy.
Today the Post Standard came over to Lydia’s Closet to take pictures to go with an article a friend from Church has done. The article should be out March 6th in the Neighbors Northwest insert. I hope this increases its usage, I have lots of clothes on my racks and want people to come and use them!
Thanks Elizabeth for doing this article!
Gotta go and make some spaghetti and meatballs!
Take Care and God Bless,
Renee
Thursday, February 21, 2008 11:46 AM CST
Hi everyone!
Peter just left with the 4 older ones to go and pick up Tray’s friend, Nour, and taking them all to go see the movie Waterhorse. It’s quite cold here and the movie is at the $1.50 theater so it’s a great way to get them out of the house without going out in the cold. I get the luxury of staying here and cuddling with Cody and doing laundry and dishes and vacuuming, and cuddle with Cody. LOL
All is going well with everyone. I had a wonderful meeting with the mom of a young girl about Nettie’s age, who will also be looking for housing in the near future. We are both very excited that Nettie and Missy want to live together. Now we have to find two more roommates so we can present our housing “plan” to one of the local agencies that assist disable persons. The agency will then work with the state to build the house to meet the needs of the kids and will be responsible for staffing the house. This is how they do it now instead of having the giant developmental centers or large group homes. It’s much cheaper and makes it so much nicer for the people when they get to say what their room is going to look like, what colors they want in their house, etc. But, it’s also hard because we don’t have any real say in who works at the house since it will be overseen by the state via the agency. I take comfort in the fact that Nettie is so verbal and will be able to report any “funny” business. We have a LONG WAYS to go, but we have started the journey with the first step.
Joshua has continued to be “drop” seizure free for over a month now!!!! He continues to have seizures and some last as long as 5 minutes, where he is very confused and unable to communicate or focus on things around him, but he’s not falling. We’ll take it for now. His MRI is now scheduled for March 17th and it WILL be sedated. He will go in a little early and have his port accessed at the 5C clinic before going downstairs for his MRI. We’ll leave him accessed when he’s done, because the next day he goes out to Strong Memorial for his IVIG, no sense in re-accessing him again less then 12 hours later.
Tray goes for his sleep study on the 3rd of March. He was going to go for an EKG yesterday for his camp application, but then his little friend called and asked him to come over and play! I was so happy for Tray to have a play date, I called and canceled his EKG. I’ll set it up for tomorrow I hope. He still has this nasty cough but other than that, he has no symptoms of any cold. I’ll give it a bit longer, but may have to take him to the peds if he doesn’t sound better by next week.
Marriela is doing AWESOME on her new Ritalin LA!! We love this med, especially when combined with the Risperdal. She is attentive, pleasant, focused and easily redirected! The only down side is that it only lasts 6 hours and you can tell when that 6 hours is up!!! We’re going to call and see if there is anything that lasts a bit longer so it will get her through the whole day. But we’re not complaining at all. This is the first time that these meds have helped at all and I’m positive it’s because she is bigger, has no gall bladder slowing down her liver and the processing of the meds as well as being given in combination.
Cody is doing well. I don’t think I’ve shared his most recent hobby. Body Art. He LOVES to take as many colored markers as he can and decorate his legs, belly and arms any chance he gets. In fact, one day he spent a good amount of time coloring his entire “package” purple. Not just the top, but the top, sides, bottom (which he must have really contorted himself to get every nook and crany like he did) and the tippy top as well. I was, at first, astounded at his choice of body parts, but then I was truly proud. LOL He clearly does not have any attention issues and can really do good work when he puts his mind to it. I just pray this doesn’t translate into a tattoo fetish when he’s older!!
Well, the clothes and vacuuming and my cuddler are all calling my name!
I also wanted to share that our little friend, Mira, has come out of surgery and is doing amazingly well!! Kids are so resilient. Plus, with all of your prayers, she is going to beat this new tumor!
Please stop by and let them know you are thinking of and praying for them all!
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=mirabrouwer
Take Care and God Bless,
Renee
Saturday, February 16, 2008 9:28 AM CST
Hi everyone,
Peter and I had a wonderful evening out last night. First we went to our Church, who had put on a “Cabaret Night” with some nice music and munchies. Peter and I didn’t realize (nor did our friends sitting with us, I think) that it was going to be all music, but after we adjusted, we enjoyed it very much. At one point a friend and I had a pretzel building contest and (admittedly through some mild cheating) I was able to stack 28 pretzels and “J” only got to 21. I did confess to my salsa glue techniques after it was all said and done though. After the show, Peter and I went out with 2 other couples and had some very nice conversation and a couple of drinks. It was our first time out with other adults in a VERY long time. Very nice and refreshing.
We awoke today to a very cheerful (too cheerful for his own good) Cody. But overall, I didn’t feel nearly as tired as I thought I would for having gone to bed at midnight and having had an actual drink with alcohol in it! LOL
Next, I need to ask for all of your prayers for a little girl who has already gone through the hell that Joshua did, and has now got to face it all over again due to a relapse. I can’t imagine the fear… here is her website and latest update. Please pray hard that she comes back to Syracuse a cured little girl.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=mirabrouwer
Joshua is spending the weekend at Casey’s Place. Yesterday I was beside myself with anger at the doctors. I work very, very hard to arrange things in such a way that our children receive what they need in timely and workable time frames, while still allowing room for normalcy for most of them. Unfortunately I am constantly at the mercy of the various people on the other end of the phone line and their ability to carry out their jobs. Here are two case in points:
1. I called 2 months ago and asked for Joshua’s annual MRI of his brain to be scheduled and told them that, due to his seizures and developmental delays, he will have to have it under general anesthesia. He’s been doing it this way for 10 friggin’ years!
I call to confirm that the date I have been given, 2/28, is a general anesthesia day (they only do sedated scans two days a week) and was informed that it was NOT, and that Joshua had not been ordered a sedated scan - even though the tech, who knows Joshua well, tried telling the person I had talked to, that it had to be sedated.
I called Tuesday to tell her that she had ordered the MRI with out anesthesia and we needed a new date ASAP. We are now on Saturday with a holiday on Monday and still no new date. This is so unacceptable!
2. I called Joshua’s NP who works with his neurologist on Tuesday. She is the one he relies upon to make medication dose changes and answer basic questions. I informed her that we needed a fax for Joshua’s stay at Casey’s Place simply stating that he is only on 300mg of one of his meds, although the bottle says 400mg. It would have taken 2 minutes to write it and fax. She said she would call me back as soon as she talked with the doctor to confirm that he wanted him to stay at 300mg. Fine.
As of yesterday I hadn’t heard back yet, so I called at 9:00 am to say that I needed the fax sent ASAP. She calls me back at 3:50 pm and wants to know why I am calling again? I told her again, that we just need a quick fax to state that he is to get 300 mg instead of the 400mg on the bottle. She seems all put out, but promised there would be a fax by 4:30. I go up to bring Joshua’s meds and ask if the fax came. . . No. I waited until 5:10 pm and NO FAX. I called the on-call doctor who informed me that since it was not an acute issue, he couldn’t/wouldn’t help.
Long story short, Joshua has to get the wrong dose of medication in order to stay at Casey’s Place. Their nurses have to follow the law very strictly and they HAVE to give what is listed on the prescription bottle. It’s not a terrible thing, and Joshua will be fine I’m sure. But, it’s the principle. I work hard to prevent these things and due to other people not doing their job, I couldn’t prevent the issue.
AGHHHHHHHHHHHHHHHHH. . . Ok, I feel better now.
Overall, everyone is doing well. The starting of some colds are being heard (we hear colds rather than see them LOL) Tray’s hacking in the morning, Marriela wheezing at night, Cody’s non-stop dripping nose and barking cough at 2 am, and Nettie’s struggle to gain her breath after walking down the stairs, but nothing terrible and awful.
Joshua is having some different kind of seizures that are a bit frustrating for him and us as well. Now he has begun to have episodes of intense sadness - crying, withdrawing from people, anger and inability to communicate why he is feeling this way - that come out of no where and then go away as if nothing happened. Sometimes he has a period of inability to answer questions after the emotion component dissipates, sometimes not. Unfortunately, people don’t realize that these are actually seizures and try to “talk” to him and then start to get frustrated or angry with him for “crying” at 12 years old. He hasn’t had one yet at school, but this will be very difficult socially if it does. He had one just before we accessed him for IVIG on Tuesday and then again yesterday while I was at Casey’s Place (waiting for that lovely fax). I swiped his magnet and within 2 minutes, he stood up and went with his worker downstairs to play basketball. So that tells me that these are definitely seizures. Very frustrating.
I’m so NOT excited that there is a full week of vacation for the kids next week. The following week, Peter is leaving for Florida to have some business meeting with his brother for 5 days. It’s always a struggle to get to all of the appointments when Peter’s out of town, so I had to reschedule a few things to make it a bit easier.
All in all, things are going well here.
Take Care and God Bless,
Renee
Tuesday, February 12, 2008 9:15 PM CST
Hi everyone,
I hope this finds you all well and warm. Here in the Northeast, we’re shivering our proverbial buns off!! There was a delay yesterday because of the -20 degree windchill. What’s strange is that for some of our readers, that’s WARM and for others, unimaginable! LOL
The kids are holding their own! Nettie is doing great. She continues to struggle with her need to “control” her life by organizing things to a fault. We’re working on teaching her that you do NOT need to have an entire three weeks of clothes OUT and on hangers all around your room to “prepare” for school. LOL She has a lunched packed by 3:00 the day before, any time she is taking a lunch and packs for Casey’s Place a full week in advance before she is going. However, with all that said, she is NEVER late and forgets NOTHING LOL.
I received a fantastic phone call from Tray’s special education teacher today and he reported on how well Trayvon is doing in third grade. He said that Tray is doing regular 3rd grade work with some very mild modifications (namely, time extension and the reading of the directions and word problems - as well as keeping him on task). He is trying much harder in reading (you may or may not remember that this was the one area he was giving them a hard time about) and he has only had a few minor “social” issues that have been successfully worked on in school. I was thrilled with the report and asked to speak to Tray (who was in the room and heard the whole glowing report as well) so I could congratulate him on his wonderful attitude and work. Can you hear the gloating and pride there. . . If you can’t it’s there!
Marriela was thrilled to fill out her Valentines Day cards this morning to take to school (actually, she only wrote her name on the teachers cards since they are bout 5 times larger than the little ones). We taped a blow pop to each card and she toted her bag off with lots of pride. Yesterday we saw the Developmental Pediatrician who prescribes her Risperdal and he was very pleased with her continued benefits with the med. We are now going to “retry” the ADHD meds to see if the Risperdal is able to handle the behavioral issues while the Ritalin LA will handle the attention and focus issues. We’ll start the med on Saturday and watch her over the week long vacation next week. We’re praying for lots of positive responses and minimal to no negative ones (which has been the case in the past).
Joshua is going to Casey’s Place for his turn the coming weekend. It’s always nerve wracking for us to send Joshua, as you never know when or where he will have a seizure. We don’t watch him 100% of the time here, but at least we know what to do if he gets hurt. He’s probably actually watched closer their, but as a parent you always like them to be close when something happens. But, I’m sure he’ll be fine. LOL
Speaking of seizures, Joshua has had another nice run for the past week. He hasn’t had any drop seizures since last Tuesday night and has only had a couple of “aphasic” seizures - similar to the ones he had in the 4th grade - at home and in school. He used to have this type all the time, where he has the inability to respond to questions and sometimes he becomes very shaky or will cling to you for dear life. Many times we know he is having this type of seizure simply because he comes and hugs you hard and won’t let go. But, the dangerous seizures are significantly reduced and we think the Zonegran is the reason for this. Tomorrow is IVIG so I'll talk with his doctor about staying at this dose for a bit.
And last but not least. Cody Bear is going strong and sitting on my lap right now listening to my telephone (it can also be an FM radio). He’s had some issues with constipation again and we think it is directly related to his milk intake. When we give milk to drink, within a few hours to a day, he’s constipated. So now he gets 90% water with 10% juice and gets all of his calcium through cheese and yogurt for now. Other than that, he’s doing great!
Well, that’s it in Curkland right now.
I didn’t realize I had misspelled “Bible” and wrote that I was now in a “bile” study group. Trust me, I’ve seen more than enough bile in my life time and don’t need to study it any further. . . The Bible on the other hand, haven’t seen nearly enough. LOL
Take Care and God Bless,
Renee
Tuesday, February 5, 2008 6:57 PM CST
Hi everyone,
All is well here in Curk “land”. The kids report cards came and there were no big surprises. Tray had a c- in reading which surprised us a bit. Apparently he has been giving them a bit of trouble in reading groups and at free reading time. We talked about it and he’s going to work very hard this semester to turn it around. He wants to please, but also wants to call the shots. Unfortunately, he’s learning the hard way, that you can’t call the shots all the time in life and when you try, it can come back and bite you in the butt. Marriela is struggling in all areas, but we knew that. She tries hard but she is her own worse distraction and keeping her attention for any length of time is difficult. She LOVES school though and that is a wonderful thing. Nettie is doing very well and spent some of her work money at her new job in Old Navy. She was very happy to have earned and then spend her own money. Joshua is doing well and has an 89 average overall. He started Health this semester and he really seems to like it!
Joshua had a fantastic run with only mild seizures and NO drop seizures for 3 weeks. Last night we increased his new med, Zonegran, and today he had two seizures. One medium (but he was sitting down in math, so we don’t know what would’ve happened if he had been standing. Then tonight, just after Peter left for the store (of course), Joshua was playing and I heard the sickening sound of a chair crashing and the “thud”. I found him with his head under our desk with another knot on the back. He had a hard time forming any thoughts for a bit, but then fully recovered. We’re going to watch him, but I’m thinking that he may have been doing better at the lower dose, even though it really wasn’t at “therapeutic” doses yet. However, maybe mixed with his other meds, he only needs a low dose. Who knows, it’s always a guessing game with Joshua. But, three weeks was a wonderful break and here’s praying for another nice three week break again.
Nettie is going to Casey’s Place this weekend as a replacement for a cancellation. She is very happy!
The State was hear to assess our house for modifications that are needed for Joshua’s safety and a few things for Nettie and Marriela. They are going to put in a walk-in tub downstairs (this is wonderful for us, as it leaves a regular tub upstairs for the little ones as well). They are also going to get Marriela her bed (one that has a special mattress to reduce her headbanging, keep her from falling out of bed, and has a head that raises so she can do her nebulizers without me propping her up on pillows and stuffed animals all night long. LOL. They agreed to a new bed for Joshua that has a special mattress that absorbs falls and has a see through siderail that can be put up whenever he’s in the bed (he has had several seizures where he’s fallen out of bed, the railing will allow him to sit in his bed and play or read or do video games and such without fear of falling out, face first.). They are also going to put a half door at the top of our stairs to prevent Joshua or Nettie from falling down during the night or when waiting for the bathroom. The other half of door is going downstairs in the kitchen were we have three steps that go down into a playroom. They will put railings along the hall and stairwell for Annette to make it easier for her to walk and last but, not least, they will replace Nettie’s old and cracked mattress to help reduce her hip pain.
We are also looking into getting Marriela a weighted blanket for bed time, and a trampoline to use as a de-stressor. As well as, a special bike for Joshua and repairs to be made to Annette’s manual wheelchair (the tires are not turning properly and one tire won’t go in all the way).
I started attending a new Bile Study for mom’s with young children, it should be awesome.
Well, that’s all for now.
Take care and God Bless,
Renee
Tuesday, January 29, 2008 12:28 AM CST
Hi everyone!
Writing to you from the clinic while Joshua is getting his infusion. The access went great and he is acting like this is just a normal thing he's done his whole life. What a difference from 3 months ago!! LOL
Our router went bad for our computer so I don't have internet access at home right now. Very frustrating. You don't realize how much you use something, until it is gone. We have a new one coming in a day or two, so I'll be back in business in a few days.
The kids are all doing very well. Joshua had only one big seizure in the entire two weeks and he was sitting down when it happened. That is a wonderful repreive from his past few months. He wears his helmet happily and I've grown used to seeing it on his head already.
Nettie went to the eye doctor and today. Good news and bad news. First, her eyes are very stable and no need for a new prescription for her glasses. She really likes her current frames and didn't want to get new ones anyways (she didn't realize you can have new lenses in old frames. . . LOL). The bad news is, her blood vessles that are growing behind her retina are getting worse and the doctor wants to go in and freeze them. However, this very rude doctor, who had the audacity to do a crossword puzzle while Peter was trying to ask him questions about our daughter, feels she can do this while awake. NOT, NOT, NOT. Is he crazy??? So, we're going to be looking for another doctor ASAP. If the vessles need to be taken care of, fine, but we need a doctor who is willing to do it, in a manner Nettie can endure and handle. I'll keep you posted.
Tray, Marriela and Cody are all doing well. Cody is now only doing one neb a day and he's very tolerant of it. Marriela is only doing one a day as well and she seems to be holding her own even though there is lots of crud going around. Tray is healthy as a horse as usual. LOL
Well, that's it for now. Mostly good stuff!
Take Care, God Bless,
Renee
Tuesday, January 22, 2008 7:40 PM CST
Hi Everyone,
Well, Cody continues to improve a bit each day. Nebulizers are down to only morning and night and soon will be only his normal Pulmicort rather than both, pulmicort and xopenex. He still has a terrible cough, but it’s loose and he seems to be a bit better.
Joshua on the other hand, has had a REMARKABLE week!! We are so very pleased for him. His last big seizure was last week at clinic! He is alert, in a great mood and has only had 4 very mild seizures in a whole week. It’s funny, because we went ahead and ordered his helmet and now he’s doing better. Should’ve ordered that dang helmet earlier, seems it is a good luck charm.
A few weeks ago I stumbled across a list of Nettie’s meds when she was 5 years old. At the time she was on 32 meds and many of them were 3 and 4 times a day, so we were giving almost a hundred different doses a day. It was crazy at times. We would fill her day’s meds every morning into syringes (she has a g-tube) and then put the syringes into Dixie cups that were labeled with the times on them throughout the day. This way we could easily see if a Dixie cup was full when it should be empty. Then there were the many different breathing treatments and skin creams and her g-tube feedings and the SAT monitor she was on continuously. Eventually, she was approved for nursing once we had to add IV meds to the mix as well. But, even then it was crazy trying to keep up with everything! Now look at her, only meds and she swallows all of her pills and doesn’t use her g-tube for any feedings at all.
So, all of that was for a reason. Somedays when I wake up I feel like I live in a little hospital zone. Seeing that list of meds brought back some amazing memories and some sad memories. But, it was a very powerful thing to look at to see how far one of my children has come. So here is a list of the kids’ current meds and a bit of my normal daily routine, if only to entertain myself a few years from now. LOL
Annette:
Ziagen, Viramune, Videx, Hyocosomine, Pulmicort, vitamin, melatonin, Sub Cutaneous IG therapy once a week, xopenex
Joshua:
Zonegran, Keppra, Lamictal, Os-cal, Singulaire, Zyrtec, Adderall, Bactrim, IVIG via his port every 14 days, Lupron injection every 28 days.
Trayvon:
Enalapril, Potassium, Lasix, aspirin, Amoxicillin, Elidel cream
Marriela:
Amoxicillin (temporary), Risperdal, Pulmicort, Xopenex, steroid creams, Elidel cream
Cody:
Amoxicillin (temporary), atrovent, pulmicort, xopenex, steroids (as needed)
Peachy – the dog LOL
Vetsulin (insulin) 2 x daily, Ketostix 2 x daily
Well, that’s a total of 40 pills, 6 doses of liquid meds, 6 breathing treatments, 2 injections and 4 doses of skin creams daily (plus the weekly IG infusion for Nettie and Joshua’s injection of Lupron every 28 days and his IVIG every 14 days) give or take depending on who needs cold medicine, motrin, Tylenol, antibiotics, etc.
Let’s just say, if you need a med, there is a good chance we’ve got it! LOL
Well, it will be funny one day to look back at all of this. And, I’m sure that one day this list will be shorter and shorter.
It’s time for Cody’s nebulizer so til next time,
I’ll see you!
Love, Renee
Friday, January 18, 2008 1:45 PM CST
UPDATE: Sunday 11:00am
Things only got rougher for Cody the night before last so yesterday we spent most of the day in the ER trying to get his asthma under control. We ultimately had to do 3 back to back treatments of Albuterol with Atrovent (3 in one hour sent his heart rate over 200, but they didn’t seem concerned at all!). When that didn’t make the difference both they and myself had hoped for, we decided he needed another super dose of steroids so they did a double dose of his normal dose (30mg) at noon. This was in addition to his 15mg at 8:00am and the 15mg he got at bedtime as well. So he is completely steroided out right now! The ER doc and myself spoke for a while and since his SATs were staying in the normal range, we felt that, although he really wasn’t that much better than when he came in, he was any WORSE either, which was a positive sign. So we both felt that though there was a good chance I was going to be going back to the ER last night, we felt it was better to bring him home to see which way he was going to go vs. sitting in a hospital room doing the same. We were hoping that the steroids would kick in sooner than later and get him over the hump. I’m pleased as punch to report that we have NOT been back to the ER. He had a great nights sleep and though still very congested and has a terrible cough, he’s breathing very well and is happy and active (though a bit agitated due to all of those steroids and nebulizers.). We also have atrovent for home now and know what to do to see if we can break the cycle prior to going to the ER again. Now, I just have to find out why he’s having such severe difficulties with asthma now after being so healthy in that department for so long. I think we’ll be seeing the pulmonologist in the near future.
Till next adventure,
Good Day and God Bless,
Renee
UPDATE: Friday 9:00am
Cody now has his third pneumonia in 3 months. We started high dose steroids yesterday and had to start antibiotics today due to severe worsening of his breathing. He’s acting fine, but is struggling hard to breath and needs to sit down a lot to catch his breath. The good news is that his SATs are staying in the normal range and he’s eating and drinking with no issue. So I’m pretty sure that we can beat this again, just like last time as long as we’re on top of it. The doctor also stated that it may be time to see a pulmonary specialist if he does this one more time. Here’s praying that he’ll hold off on any more and this is just a rough winter.
Marriela was also put on antibiotics for a severe ear infection. Her asthma is also giving her a hard time, but she wasn’t nearly as bad as Cody so we have forgone the steroids for now for her. Today Peter took Marriela out to Strong for her GI appointment and we were blessed a “good-bye unless you need us again”! I thought this is what they would say, but it was nice to hear it from them that they’re happy with where she is and how she’s doing.
I’ve been scouring the internet for anything that I can use to help Joshua. A mother on the epilepsy listerve mentioned that her little one was getting a SPECT scan. Apparently this is a special test that you give once when there is no seizure and once right after a seizure has occurred. Then they compare the scans and see if there is a focus causing the seizures. I am going to bring this up to his doctors and see if it’s an option for Joshua. His helmet should be arriving tomorrow.
Well, that’s all for now, time for another nebulizer treatment for Cody before he wheezes my ear off here! LOL
Oh yeah, we found out today that our dog needs twice a day insulin instead of once a day. We also need to do blood draws at home for 12 hours to determine her glucose levels during that time and to see if we need to make more adjustments. The fun just keeps getting funnier around here! LOL
Ok, that’s it for now.
Take Care and God Bless,
Renee
Wednesday, January 16, 2008 7:43 PM CST
Hi everyone,
Well we did it. Today, at 4:00 pm, we ordered Joshua his first helmet to wear. Peter found a baseball helmet that is used by outfielders. It is a hard hat, just like the batter wears, except there is no ear covers, so it looks very much like a baseball hat, just hard. I pray it looks ok and he likes it enough to wear it.
So what drove us to the final point? Yesterday, while out at Rochester, he was all hooked up to his infusion (oh yeah, the port access went wonderful again, thanks Janet!). I had just gone to get him the sitting chair we use for him to play PS2 in (it has arm rests and is a normal adult chair so if he has a seizure he won’t fall out onto the floor). I sat the chair down and Joshua went to the cupboard to get the video games, I was right next to him, when he dropped the container with the games and FLUNG himself backwards in a seizure. I had never seen him have one like this before and was completely caught off guard, a poor mom walked in just as I yelled “seizure!” and she ran to get a nurse. He had fallen straight backwards into a children’s table that’s in the middle of the floor, bumping his head really hard, causing a huge goose egg on the back of his head. He already has enough wrong with that head so we need to protect it.
We also drew new labs and I’m happy to report that his ANC is back up to over 2000, so he must have had a virus that caused the low ANC.
Today we were called from the nurse at his school because he had an extended seizure but that it was different from his norm. He is now having ones that cause him to just loose all tone and he slumps forward often hitting his chin on his legs when he’s sitting on the floor. Peter and I are beside our selves trying to find a way to beat these seizures. And we’re frustrated, sad and losing.
We are also now faced with the reality that we are going to have to remove his sign language interpreter and replace her with a one to one male aide. He does so well with his signer and it makes all the difference in his academics, but his safety has to come first. So he needs a male aide that can go in the bathroom, locker room, gym class, etc and be agile and large enough to catch and manage him during a seizure. How very sad now that we have to plan everything around these damn seizures. They were such a small component earlier in life and now, when he should be gaining autonomy, he’s losing more and more and there’s no end in sight. We walk around on egg shells begging him to sit down so he doesn’t fall on hard, sharp objects. He’s tired of us asking him all the time, “are you sitting Joshua!” and then when comes down stairs to play, you have to be vigilant in watching over him to try and prevent him from falling one to something hard, pointy, dangerous, etc. It’s nerve wrecking experience and it is wearing on me. I want more for my son. I want him to live life with out the need for a person to have to constantly shadow him. I want him to do what he wants without worrying if he needs to have an aide or helmet. I want him to be able to walk through our house and be safe,..
I am actually thinking it’s time to go back in the hospital for the long term EEG and let them actually see these seizure types and let them pinpoint them to a specific place so we can go and cut out that spot. I don’t even know if this is possible. I don’t know anything anymore. I just don’t know how to help him anymore and it’s tearing me apart. I just wish God would guide me somewhere to help me find the answers my baby needs. He is such an easy going, hard working child, who has never asked why this has happened to him. He does what he’s asked and that’s all knows. How do you look at him and not see the perfect child that I see and then not get angry as hell that his life is completely run by these seizures. SIGH. I guess I need to do some more research.
Cody and Marriela both need to go to the doctor tomorrow. Marriela has a bad ear infection, running a fever and moderately to poorly controlled asthma at this time. Cody has croup and wheezing and each of these episodes results in repiratory distress and high dose steroids, so I’m hoping we’re heading off early.
Tray and Joshua are in their room fighting about who’s lunch I’m making first tomorrow. LOL
Nettie is excited, her next Project Help job is going to be at the Old Navy store in the Carasoul Center mall. She already has plans to use her discount to get several nice things. Good for her!
Well, that’s it for now, my ambien sleep pill is making harder to type. So good night and God Bless,
Renee
Wednesday, January 16, 2008 7:43 PM CST
Hi everyone,
Well we did it. Today, at 4:00 pm, we ordered Joshua his first helmet to wear. Peter found a baseball helmet that is used by outfielders. It is a hard hat, just like the batter wears, except there is no ear covers, so it looks very much like a baseball hat, just hard. I pray it looks ok and he likes it enough to wear it.
So what drove us to the final point? Yesterday, while out at Rochester, he was all hooked up to his infusion (oh yeah, the port access went wonderful again, thanks Janet!). I had just gone to get him the sitting chair we use for him to play PS2 in (it has arm rests and is a normal adult chair so if he has a seizure he won’t fall out onto the floor). I sat the chair down and Joshua went to the cupboard to get the video games, I was right next to him, when he dropped the container with the games and FLUNG himself backwards in a seizure. I had never seen him have one like this before and was completely caught off guard, a poor mom walked in just as I yelled “seizure!” and she ran to get a nurse. He had fallen straight backwards into a children’s table that’s in the middle of the floor, bumping his head really hard, causing a huge goose egg on the back of his head. He already has enough wrong with that head so we need to protect it.
We also drew new labs and I’m happy to report that his ANC is back up to over 2000, so he must have had a virus that caused the low ANC.
Today we were called from the nurse at his school because he had an extended seizure but that it was different from his norm. He is now having ones that cause him to just loose all tone and he slumps forward often hitting his chin on his legs when he’s sitting on the floor. Peter and I are beside our selves trying to find a way to beat these seizures. And we’re frustrated, sad and losing.
We are also now faced with the reality that we are going to have to remove his sign language interpreter and replace her with a one to one male aide. He does so well with his signer and it makes all the difference in his academics, but his safety has to come first. So he needs a male aide that can go in the bathroom, locker room, gym class, etc and be agile and large enough to catch and manage him during a seizure. How very sad now that we have to plan everything around these damn seizures. They were such a small component earlier in life and now, when he should be gaining autonomy, he’s losing more and more and there’s no end in sight. We walk around on egg shells begging him to sit down so he doesn’t fall on hard, sharp objects. He’s tired of us asking him all the time, “are you sitting Joshua!” and then when comes down stairs to play, you have to be vigilant in watching over him to try and prevent him from falling one to something hard, pointy, dangerous, etc. It’s nerve wrecking experience and it is wearing on me. I want more for my son. I want him to live life with out the need for a person to have to constantly shadow him. I want him to do what he wants without worrying if he needs to have an aide or helmet. I want him to be able to walk through our house and be safe,..
I am actually thinking it’s time to go back in the hospital for the long term EEG and let them actually see these seizure types and let them pinpoint them to a specific place so we can go and cut out that spot. I don’t even know if this is possible. I don’t know anything anymore. I just don’t know how to help him anymore and it’s tearing me apart. I just wish God would guide me somewhere to help me find the answers my baby needs. He is such an easy going, hard working child, who has never asked why this has happened to him. He does what he’s asked and that’s all knows. How do you look at him and not see the perfect child that I see and then not get angry as hell that his life is completely run by these seizures. SIGH. I guess I need to do some more research.
Cody and Marriela both need to go to the doctor tomorrow. Marriela has a bad ear infection, running a fever and moderately to poorly controlled asthma at this time. Cody has croup and wheezing and each of these episodes results in repiratory distress and high dose steroids, so I’m hoping we’re heading off early.
Tray and Joshua are in their room fighting about who’s lunch I’m making first tomorrow. LOL
Nettie is excited, her next Project Help job is going to be at the Old Navy store in the Carasoul Center mall. She already has plans to use her discount to get several nice things. Good for her!
Well, that’s it for now, my ambien sleep pill is making harder to type. So good night and God Bless,
Renee
\
Friday, January 11, 2008 6:57 PM CST
Hi everyone!
What crazy weather we’re having isn’t it??? I spent the day cleaning up the unseen doggie do do from the back yard where all of the snow melted. I didn’t even wear a coat and I was fine! How strange not to see any snow on the ground in January.
Joshua is de-glued and we made it through all of our appointments. We haven’t heard anything back yet from neurology, but we did start his new drug. So far, knock on wood, we’re seeing some improvement. Thus far, today, he hasn’t had any seizures. And the past two days he’s only had one small one each day. That’s a HUGE improvement over the past 3 weeks or so.
Tray’s appointment with the Sleep Center went well. She is having us come in for yet another overnight sleep study out in Rochester. She feels his results are probably worse than we see on his recent study, because they aren’t peds specific and therefore haven’t got the proper reference to compare his results too. Then, if what she suspects is true, he will need to undergo a cardiac catheterization. This was a shocker, but it’s the only way to assess how the C-PAP is working for him by measuring the pressure levels in his heart and arteries. She feels that Bi-PAP would be very hard and may even hurt him, but that C-PAP is actually easier to tolerate, even though it’s harder to find the correct setting. So we’re off to Strong on March 3rd for that.
Marriela is cleared from Surgery and will go on Friday of next week for a follow-up with GI. I think she will be done with them as well, unless we have problems, so she’ll be done out in Rochester. Each time I say that though, we end up needing yet another doctor out there. LOL
Nettie is doing great. I gave her her weekly IVIG (her nurse is on vacation) and fell asleep before it was finished. At 1:57 the phone starts ringing downstairs and wake up and sprint to get it, thinking awful thoughts in my head about why we’re getting a middle of the night call. I missed it and as I walked up the stairs listening to the voicemail, I hear Nettie talking and what she’s saying is matching my voicemail. Apparently she had fallen asleep too before her infusion finished and woke up and called me on the phone to come and remove her needles! She’s sooooo funny sometimes. I mean, I’m only one room away, but she called me on her cell phone at 2:00 in the morning! LOL
We visited the vet today with the dog we inherited from our father-in-law. The poor thing has gone completely blind and thought that she has some other serious things going on. We took her in, expecting them to say it was time to say good-bye and that she was not going to improve. Nah, instead, she had $500 work-up only to find out that she only has advanced diabetes, and cataracts. We started her on insulin today (yes, now I get to add one more med to my morning routine UGH). Hopefully we’ll see a nice improvement in the near future. The doctor even said we can have surgery to remove the cataracts in one eye so she can see some again, at $1000. I’m afraid she’s going to have to bump her way around for a bit longer, as there is NO WAY we have that kind of money for an eye operation for our severely diabetic dog who ate an entire chicken carcass 9 months ago and needed $1800 in emergency surgery and care. Call me cruel. LOL
Other than that, all is well here!
Take Care and God Bless,
Renee
Monday, January 7, 2008 5:16 PM CST
Hi everyone,
I’m sorry it’s taken me so much time to get a new update up and going. We’ve been busy here and enjoying having a reliable vehicle!
Joshua is currently home with a head full of glue and wires as he undergoes his 10th long term EEG. This one is for 24 hours. We usually stay out at the RMH but there were no rooms available. I have to bring Tray and Marriela out as well for appointments tomorrow so we decided to let Peter take Joshua out to get hooked up and we’ll all drive out tomorrow for the day for the appointments and removal of Joshua’s gear.
We tried the Lamictal wean and it went very poorly. Yesterday he had four big seizures and three on Saturday. He RARELY has more than one a day, so that is a huge increase. We went ahead and increased his dose back to his original dose and will wait now to add another med to the mix. His two drugs he’s on aren’t working well enough alone and maybe with a third, plus the IVIG he’ll get some relief.
Joshua also saw the endocrinologist and he decided to add some new concerns to the mix. First, Joshua hasn’t grown at all in the past 6 months. Not one centimeter or gained one pound. Now, the weight, I’m ok with, but the height, we honestly thought he was getting taller. In addition, he’s back to peeing all the time again and it may be the kidney stones acting up, so now he’s off of his Calcium (needed for his osteoporosis) until we get a 24 hour urine collection. In addition, his ANC (many of you know what that means) is 1200. Now, I’m not that worried about it, but apparently, after some revisiting of past labs he’s dipped up and down around 1,000 for a while now. Normal is 1,500 or higher, so the doctor wants the immunology team to review his charts again. He’s also referring us a kidney specialist (since our urologist is no longer at the hospital) and another genetic specialist. We saw the genetics doctor here, but we were under impressed with his extremely abbreviated evaluation and lack of interest in connecting any possible dots. We don’t anticipate there will be any mind blowing revelations but do think that the dots connect in some way and we need guidance. So we’re going to see the Strong Memorial genetics doctor now. We got rid of 2 docs and picked up three, not bad! LOL
The rest of the kids and are doing very well. We went to Elmira for the weekend to see Peter’s Dad finally for the Holiday’s. We stayed the night at the Country Inn in a nice suite and took the kids swimming and hot tubbing. Nettie didn’t go with us, as she was invited to stay at Casey’s Place for the weekend. We missed her all weekend, but still had a good time. LOL
The van is running great and we’re so very pleased to finally have a reliable and comfortable mode of transportation. We put in the two screen DVD player that Santa brought and the kids were practically silent the entire way to Elmira! Very nice.
Tomorrow we’ll discuss Trayvon’s need for bi-pap at night with the Strong Sleep Center doctor. Then we’re off to see the surgeon for a final clearance on Marriela’s gall bladder surgery and then kill some time as we wait to have Joshua de-glued and unplugged.
Time to finally get this dead tree out of my house, ughhh, I HATE all of those loose pine needles!
Till next time!
Peace and Love,
Renee
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