So L had his initial meeting with the transplant team. I am scared, worried but like the outcome even though it bares quite a few risks. L has been doing ok, but has not been sleeping well. He has been drinking and eating, so I don’t think that the ammonia is elevated in the “danger zone”. In addition, his attitude and behavior indicate that it is not over 100. We certainly need to watch him and do the things we know to do : gatorade, MCT oil, sugary things etc.
OK back to the transplant… L will receive a whole Liver as opposed to a part of a living donor. The reason being is that since the Urea Cycle Disorder is Genetic, there is a pending risk of it not going away due to the same genetic make-up even though no one else in the family has it (that we know of). It could be that I am a carrier, or anyone else in the family is a carrier and so there is too much risk. So he already has given his blood, now we are waiting for an MRI/A (MRI of his abdoman). The docs and transplant team will meet next week, recommend L to be placed on the waiting list, and if there is not enough points to do so, there will make additional recommendations or something like that, in either case, in about 3-4 weeks L should be on the liver transplant waiting list. Of course this then means that we could receive a phone call at any time, on any day.
In the mean time we will hope that L does not have many spills or relapses that could damage his brain (or worse). I think if he doesn’t get some good sleep soon, we will visit the ER once again sometime within the next few days.