Transplant Update

Ron was here over the weekend and was able to go with us to the GI appointment on Friday. I’m so glad he was here for this one because they gave us some good info.

It looks like Xander is going to be listed in the next month. His liver is doing relatively well with all that it has going on but nutritionally he is suffering. We have him on the feeding pump as much as we can. It may come to 24hrs a day if his weight doesn’t increase.

There are just a few things to complete before listing happens; an HIV blood test, meeting with the social worker and some financial paperwork. After all that’s set, they will plug in numbers from his various blood tests to get his Pediatric End-Stage Liver Disease score (PELD). His PELD score determines where he is on the list. The sickest children have the highest scores or are at the top of the list. After he is listed and has his score, we can start the testing for living donor. Keep your fingers crossed that Ron is his match.

In some way I find it a relief. He will definitely do better after transplant. I do worry about those Immunosuppression medications. They make me nervous. Rejection makes me nervous. Post-Transplant Lymphoproliferative Disease (PTLD) makes me REALLY nervous.

I do realize without the transplant he will die. So I’d much rather be nervous about the list of things that ‘could’ happen than not have Xander at all. He’s a great kid and he’s WORTH it.