Re: Chloe's futureBy: Emily H (2:20 PM 06/22/2013)
Do you use Facebook? Our facebook message board to so much more active and I think that you'd get a really good response there if you asked the question.
I have a son who's been waiting for and is listed for a transplant, and has been for many years. The question of transplant vs. rehabilitation is a very hot topic right now in Short Bowel Syndrome care. The heart of the debate is that transplant doesn't mean a normal life for most children. There is long-term immune surpression and risk of infection and rejection. That's no small thing.
On the other hand, while many children survive long term with TPN (I know some patients who have had TPN support at night for going on 20 years).. it also comes with it's own set of issues.. which I'm sure you're well aware of.
But, there are kids who with lengthening surgeries and strict diet and good GI support, are able to wean off to TPN.
And there are other people who say that it's worth the wait for technology to improve... waiting on TPN trying to rehabilitate and letting the medical science get better.
It can be confusing and overwhelming. And usually my answer is to go ahead and go for a transplant evaluation because most transplant programs also have a strong intestinal rehabilitation program and they won't list a patient for transplant unless they feel that they have failed rehabilitation.
However, Riley Children's has some of the shortest transplant wait times and highest transplant volume in the country. On the one hand, that means some very experienced transplant surgeons and a very experienced post-transplant recovery team. On the other hand, they are one of the only transplant centers that I don't know to also have a strong rehabilitation program.
So - what do you do? Well, since I know you're the praying type, I think you pray about it. I can tell you that we prayed and felt very strongly to list my son for transplant at a smaller transplant center near us with long wait times to give him time to get older and stronger before transplant. For him, that was right for many years.
Then one day, we had the feeling that we needed to change centers and work on getting the transplant faster. (Yes, he is still waiting. Rare blood type.)
For you? I don't know what is best. But I think you are doing the right thing talking to the GI and the transplant surgeon. You could consider going to another center for a 2nd opinion before deciding which route to take.. good doctors can surpress ego's enough to honor that choice... if your insurance will pay for the 2nd opinion.
I do have faith that God has a unique plan for each child. No one treatment is right for every kid with SBS. But I have faith that a prayerful mother can find the right path for her child.
Please use the link on the left to Facebook and reask this question in our group. You'll get answers on all sides and from both extremes, so weigh the answers carefully. But I know we have other Riley's transplant patients there and that may give you some great insight.