On August 14th we flew to Omaha for an Evaluation for an Intestinal Transplant. After 4 days of testing and meeting the transplant team, the Intestinal Rehabilitation Specialist/Transplant Surgeon, Dr Mercer, told us that he thinks Evee is a long ways from transplant, since her liver is still quite healthy (this starts to break down with long term use of IV nutrients). His first questions for us were whether or not she had time in her life where her intestines worked at all, and after hearing that she has had times, although they certainly weren’t perfect, even when they lasted a week, he felt that there is still hope for finding out what makes Evelyn’s guts tick. He would like to work with the intestines she has before going the transplant route. His plan is to repair a dilated section of her small intestine and he is hopeful, since she still has a large amount of her own small bowel still and there is a non-dilated section to work with if all else fails. They said to expect any number of hours for the surgery itself. Her stay will be 2 weeks in the hospital and two weeks staying close by; after this we would plan to see him routinely as needed. So a month in Omaha on our own schedule is much better than the 6 months we expected for transplant with only 6 hours notice. The risk of the surgery is much less than transplant and Dr Mercer is optimistic it will help her. If you would like to meet Dr Mercer, here is a video from their website; it is about a girl who had a surgery done by Dr Mercer as well. This is called the STEP procedure, which is Plan B if he finds it a better option for Evee, once in surgery. The surgery he is planning to do does not need to necessarily lengthen her bowel, as the STEP procedure does, but simply make its diameter smaller by cropping the intestine down its length, making all the intestine the same width. If much of her bowel is lost he will utilize the STEP method.
So for now transplant isn’t in the near future, thanks be to God. We hope to schedule surgery for early September, but are still working on getting insurance approval.