Thursday, September 18, 2008

Appointment with GI doctor today. We began discussing Dylan's biggest challenge, his lack of growth. Possibility of the necessity of a liver transplant is first mentioned. Dr. says that Dylan would likely need a liver and kidney transplant at the same time, as the anti-rejection drugs used for the liver transplant would destroy Dylan's kidneys, which already do not function well. Dr. suggests Boston Children's Hospital for the transplant.
We are very surprised because the first we heard of a transplant was shortly after Dylan was born. The doctors then had thought he might need a kidney transplant at some point, but that would not be for years and years to come. His kidneys seemed to be functioning well enough throughout his first year. After the initial shock wore off, we began to feel much better. For the past year we have been hoping that Dylan's organ would begin to function better and that he would grow. We have tried everything from pouring calories into his little body, giving him MCT oil, and giving him nearly a dozen medicines and vitamins a day. His body has not responded like we had hoped, and we feel as though for the past year we have just been treading water. We are looking at the transplant as taking a proactive step in Dylan's care and are hoping for a much higher quality of life for him through a transplant.