God Bless you Amy. Losing a child and another stuck in the ICU after his transplant. My son Justin has had his fair share of complications - including time in critical care (the only place where care is sufficient for our complicated kids) -and I like you would not reverse my decision because I could not stand lose Justin's brain to all the hyperammonia episodes. The way I see it - is that transplanted kiddos sometimes have to get past complications but untransplanted kids also have to get past "complications" of not being transplanted - which also brings across many scary situations. Sometimes it seems like we've been handed a no win scenario - but when things are going well with a transplanted kid it is heaven compared to a typical day giving unpalatable meds every few hours and counting every gram of protein.
Praying that your kiddo will turn the corner. Hang in there!
Hello! It's been a long time since I've posted out here. Life always gets the better of us! I've had 4 children born with citrullinemia. We lost one, the other 3 have all had liver transplants. yes,... more
Oh Amy,I am praying that things will improve. That statement speaks volumes to any parent considering it after all you have had to deal with.If it was not for this web site I dont think McKayla would ... more
Jodi. . .you made my day! I keep wondering if I should migrate this 10 year old site over to Facebook - but I sure like the discussion board here. Maybe I should create a presence over there but... more
Absolutely go to Facebook!! I think you may be able to reach more people there! I agree with Jodi, this site has made a difference - I may not always respond to posts, but I read them all and have... more
Good Joe cause this site changed our life! I am glad it is true I remember the very day I found this site. I said I am thinking about transplant,and I got the response whats to think about and at... more
Amy, I'm hoping that your little boy gets better, alot of prayers and support help! I have talked to or gi dr in Philadelphia she told me to talk to my daughters metabolic drs about my decision of a... more
I have contacted NUCDF since Alysa was born they have been so helpful, now facebook is hard bc I don't know where to look for parents, I found a few from other parents but if you know any please let... more
Re: Life after transplant Joe Marquez,Wed Oct 27 9:54am
My daughter Katy is the exception to the rule on transplantation. She is 14 and 1/2 years post liver transplant and has never had a rejection episode nor has she ever been in the hospital since she... more
McKayla as well she is 13 and Transplanted January 5,2004 and has never returned to the hospital she only spent 12 days in and I spent 7. I was asked to go and speak at a conference in Vancouver,... more
I love reading these stories about Katy and McKayla. I know Justin has had an infinitely better life than the trajectory he was on before his transplant. Before TRUE Kids existed - the Ping and... more