Surgical plans changed

Dr. Jennings met with us today.  Peter was scheduled for surgery tomorrow - a shunt procedure to decrease portal hypertension so that we could proceed with bowel closure several weeks later.  That surgery is now cancelled, as a decision made together with him and us.  The concerns with the shunt are that the liver may not receive enough blood for good perfusion, and that the liver may be taxed too hard with such a major surgery at this time.  Peter's biopsy last month shows that Peter's liver disease has not progressed, but that he still has some bridging fibrosis.  That makes his liver more vulnerable in recovery from major surgery. 

Our plans now are going to involve a different surgical approach in a few months.  Dr. Jennings will likely try to attach the lower section of bowel to Peter's stomach so that food can pass through the bowel and less come out the fistula.  Or he may try to close the fistula, but the fistula has huge collateral blood flow and tying off the circulation may increase portal hypertension, adversely affecting the liver.  (Hence one of the reasons we had been planning for a shunt procedure in the first place.)  Both surgical approaches are on the drawing board at the moment, with a leaning towards the first approach.

The thought is that if we can utilize the bowel enough to get off TPN, the liver has a good chance of healing.   Then the bigger surgeries required to finish rerouting the collateral circulation and closing the fistula may be performed at some point later on if possible.   If the bowel closures cannot be performed, even if we can just get Peter off TPN it would ultimately help his liver and be better for him. 

None of this is an easy solution, and plans of course may detour again, but we are all optimistic that this is all in Peter's best interest.  We were again reminded by Dr. Jennnings that there is no other person in the world like Peter.  Between the bowel, the liver, the portal vein clot... he is quite unique.  The fact that he is not only alive, but is alive and thriving, is truly remarkable.  Omegaven saved his liver and has undoubtedly extended his life on TPN.  Without Omegaven he would have either needed to go on for transplant or would have died.

So, as plans for a different surgery unfold, more will be posted.  For now, we will return home tomorrow and hopefully get around to posing some of the photos that are long overdue on this site.