Well, we'd hoped that Jaisal would be able to go many many years without needing a transplant, but it seems like his liver has other ideas. In early July, Jaisal got a liver infection known as cholangitis. He'd had similar infections before, but this one hit him hard. We were in the hospital for 12 days and throughout our stay Jaisal's key lab values related to his liver function were steadily increasing, which is not a good thing.
The folks at Children's Memorial Hospital scheduled a transplant evaluation for Jaisal on August 30. Our main goal for the evaluation was to get Jaisal listed, so that Kirk and I could get evaluated as living donors for him. It was a LONG day meeting with the social worker, financial person, the organ procurement people, pharmacist, nurses, nutritionist, and then finally the GI doc and surgeon. We learned lots of good information about what to expect with a transplant and post-operative care and complications. We were, however, pretty surprised, when at the end of the day Jaisal's doctor said that if Jaisal was his kid and he was acting conservatively, he would get Jaisal transplanted sooner rather than later. Wow. We thought we had maybe 6 or more months before we really needed to talk about transplant. It definitely took us a while to process this new reality.
Jaisal is now officially listed for an organ transplant. He has a PELD score of 8. The PELD score ranges from 0 (not very ill) to 40 (extremely ill), so we don't expect Jaisal to get "the call" for a cadaver liver any time soon. Both Kirk and I are able to be evaluated as Jaisal's living donor and after some discussion, we've decided that I am going to get evaluated first. I am scheduled to go through the living donor screening process at Northwestern Memorial Hospital on Thursday, September 15. We'll know about a week later if I am a match, and if I am, we hope to get Jaisal scheduled for a transplant sometime in early October.
We will do our best to update here as things progress with Jaisal.
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