Children's Hospital Boston consults

Dylan had his consults yesterday and today. We met with the liver transplant team yesterday, as well as a cardiologist. Dylan also had an ultrasound of his abdomen on Monday. Today we met with staff from infectious disease, the renal transplant team and Dylan underwent some blood tests. It was a very long two days. Dylan barely napped at all since he would just fall asleep in his stroller only to get woken up to be examined. He was such a trooper and made friends with all his doctors.

All of the specialists are now going to collaborate and determine whether or not it is their recommendation that Dylan undergo a transplant. The liver team is apprehensive about listing Dylan for a liver transplant due to his small size. Ideally, they would like him to be at least 20 lbs. to undergo such an operation. He is currently 10.9 lbs. Dylan also has some minor pulmonary stenosis and although the cardiologist in Boston said there is nothing indicating that his heart is not strong enough to undergo a transplant, she would like to order a cardiac catheterization in order to get a better idea of the amount of pressure the right ventricle is pumping with. The cardiologist in Boston said that Dylan really does not need the cardiac MRI that was previously scheduled as it won't really give much more information than we've already gotten from the echocardiograms that have been done.

The kidney team gave us a ton of information. They recorded the meeting and will be burning a cd for us and mailing it soon. The kidney team meeting was more informational, rather than diagnostic and pertaining directly to Dylan. The kidney team is in agreement that ideally we need Dylan to be bigger in order for a transplant to go well. They suggested growth hormones to help Dylan get bigger and we think this is something we are going to explore.

Nephrologist visit

Visit with Dylan's nephrologist (kidney doctor) today. He is in agreement that Dylan needs a liver-kidney transplant. He said if Dylan did not have the lack of growth issues that he would not have an immediate need for a kidney transplant, but he definitely needs a liver and therefore a kidney. Dylan's nephrologist feels Dylan will be placed high on the transplant list and estimates that a transplant could happen anywhere from two months to a year and a half from now.

We also heard from Children's Hospital Boston today and an MRI of Dylan's heart has been scheduled for November 18th to make sure he's strong enough to undergo the transplant.

Transplant consult

Dylan's transplant consult is now scheduled for Monday, October 27 and Tuesday, October 28th. The first day we will be meeting with the liver transplant team and the following day is the kidney transplant team. This consult will be an information gathering meeting about Dylan, as well as some exams. We will then find out whether or not Dylan will be listed for a transplant. If he is found eligible to be listed, we will have to go to Boston again to learn what to expect and to begin preparing.