So what did Dr. Flake say?

While we were at CHOP two weeks ago inpatient, the GI doctor there felt that the best way for us to get Peter's bowel up and going is to surgically put it back together. That would give it the best shot at showing us how functional it is. Dr. Kamin has said the same. Sounds simple. Dr. Kim has told us that Peter's bowel may never be able to be surgically closed as of our last trip to Boston in February. However, Dr. Kim encouraged us to get another opinion, as someone else may see an option that he doesn't. So while we were at CHOP, Dr. Flake did come to see Peter and me. The bottom line is that he also feels Peter is a tremendous surgical risk and that his option is really only transplant at this time. Risks include: portal hypertension (bleeding risk during and after surgery, and possible poor healing from altered cirulation), increased coagulation times (bleeding risks again), ascites (poor healing and fragile bowel tissue), prior surgical scarring of the bowel (adhesions in the bowel that would be stronger than the bowel itself, lending the bowel to tearing when trying to separate the adhesions), as well as the facts that we don't know if the bowel actually works, and that we still may end up needing a liver tranpslant down the road if the liver truly isn't much better than it was. Finally, Peter has to heal from what Dr. Flake felt would be multiple risky operations. He said he has people with healthy bowel develop fistulas after bowel surgery and worries that Peter would only develop more fistulas with surgery. A transplant would give him a whole new bowel, new liver, and remove the portal hypertension because his portal vein and clot would leave with his liver and be replaced with the new liver and its circulatory veins and arteries.

Not the answers we were hoping for, and Dr. Flake apologized that he couldn't give us the non-transplant answer that we wanted. So we are planning to seek the advice of a third surgeon who works with Dr. Puder who is the Omegaven doctor at CHB. We would plan to see him the next time we are up in Boston. That will give us time for the TPN nutrition changes to kick in and maybe even to begin testing the bowel a bit more. If he also says there is no other option, then that is our answer. But he may see things differently, as he has for two other short-gut children that we are aware of. Dr. Kamin reminds us that Peter is doing things now that have not been done - kids as sick as Peter have either gone on to transplant or died, not acted better and better, and not improved by labs and examination. So he may still surprise us with the improved TPN nutrition and drop the ascites, may continue to lower the coagulation numbers (last INR was 1.3), and may have a healthier bowel with the improved nutrition. Portal hypertension may still be of concern with operating, or maybe there is something we can do to assist with that risk as well.

Everything has some big risks - surgery to put the bowel together, transplant and post-transplant living, staying on TPN, having portal hypertension, having a central line (the PICC line). Once we get our third opinion, then I guess we weigh the risks and try to choose to keep trying to rehab the bowel or to transplant. Or we may not have a choice... but we feel that we would be fine with that too. We have been praying for direction and patience while we wait to see which way his bowel and liver and surgical opinions go. We are always grateful for Peter's smiles and playfulness... which have been more abundant than ever. Maybe that is God's way of giving us patience - having Peter show us that he is content and patient, and we should be too.