liver transplant

heavenpaige

I was just curious if any other parents have children that had a liver transplant or any organ transplant? My ds #1 had a liver transplant last year. He is going to turn 4 next month. This has been the hardest almost 4 yrs of my life, so many ups and downs.

Spockles

Did he have a genetic condition causing issues with his liver, requiring the transplant? Sorry that you've had a rough 4 years.

heavenpaige

He was diagnosed with Allagille Syndrome. It is usually a genetic disorder but he got it as a fluke. He is also our first child so things were very unknown, etc. We have another ds and he is healthy. They are almost the same size and they are 25 mo apart.

gimmietimmies

Yep, btdt, but kidney transplant here. He spent so many months in hospital until he got his transplant ten days before his fifth birthday. We're ten years and going now. Those years were extremely hard. I do get the growth thing, ds went from 110%ile to below zero. He's still very short for his age, but I see hope. He is 5', but he's grown into men's size 10 shoes. 

heavenpaige

thats good to hear. it gives us hope. he is almost 4 and 36 in/32lbs. my 21 mo old is 26in/26lbs. we always tell hime to be nice to his little brother b/c hes gonna be bigger than him one day. lol

gimmietimmies

Lol, that's what we tell him now, dd1 is his height right now and it boils his butt. The metabolics specialist said that if he was genetically predisposed to a certain range, his body would likely try grow to that. His immune suppression is low right now and that helps. Once transplanted, it tends to help most kids get on track growth wise. But even if they don't, it's not the end of the world. We tend not to focus on it and draw positive associations for ds when he gets down about it. After all, all the stuff he's been through has kept him here nd healthy, and that's always been the goal. 

kturner61

Very close friends of ours little boy had a liver transplant at 3 years old. He is now 6 and a perfectly healthy little man. His was unexplained liver failure. He had this happen 3 times before and somehow his liver would recover. The 4th time, it did not and he went into a coma. He had a liver within 24 hours of becoming unresponsive. We all did not know that he was the highest possible level you can be. The doctors told them after the transplant that they did not think he would survive another 12-24 hours from the time he got the transplant had they not found a donor.

 Z never complains about blood draws, his meds or his hospital stays due to CDIFF and a minor rejection due to a med imbalance. 

 He is definitely my hero!