The Alternate Bowel Plan

We discussed this plan initially while up in Boston, but I haven't posted about it because no one was sure if this was the approach we would take.  The plan is to create more ascites in Peter's belly to prepare him for one of the abdominal surgeries that I described in the last post.  Ascites is basically fluid accumulation in the abdomen, and it can make the abdomen protrude quite far. Usually we are trying to keep ascites off Peter.  He is quite prone it, but by monitoring and adjusting sodium and fluid, we can keep it in check. 

We are now trying to take advantage of his tendency to putting on weight in the belly so that there is extra abdominal skin when he goes for surgery.  One of the many surgical challenges that Peter faces is the possibility of not being able to close the abdomen back up after surgery.  Peter was unable to be surgically closed after he suffered from abdominal compartment syndrome back with his initial surgeries.  His little body spent months growing skin over a mesh dressing that was placed over his intestines.  That area is now a patch of scar tissue roughly three inches by five inches, and the muscles underneath are still about 4 cm apart, where they should actually be touching.  The big issue with leaving the abdomen open like he had to, is primarily infection.  That is a huge risk, especially when there is an ileostomy present as well.  The development of a fistula is another issue, as we found out when Peter developed a fistula right in the middle of the scar tissue, where a little piece of mesh was poking out.  If we can expand his abdomen enough now, then he should stand a better chance of post-operative closure. 

It is a novel idea to do this using ascites, apparently.  The development of full-blown ascites carries risks such as difficulty breathing, general discomfort in the abdomen, and infection of the ascites fluid itself.  However, Peter has had more and less ascites all along, and generally he seems to weather it well.  We are all watching him carefully as we begin trying to expand his belly now.  He started at 61cm around about three weeks ago and he is now 64cm around. 

It is hard to watch him get bigger in the gut and not want to take that fluid back off him.  He will likely look more and more puffy in the face as this continues, and I imagine he will end up wearing nothing more than big T-shirts and his diaper, instead of his cute little overalls that cover up his ostomies and slightly big belly usually.  But, as it has the potential to provide a big advantage to his surgical recovery... please pass the salt!

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.