Recovery is progressing

I have been home for a little while now and solidly on the path of recovery.  I have been going for walks daily, am up to just over half a mile which is pretty close to my limit and the drainage from the fistula seems to be slowing.  We are struggling with leakage around the ostomy bag that collects drainage from the fistula but we are slowly learning how to manage it.

If this were a normal recovery, I would be quite pleased with how everything is going and would be exploring my limited food options.  We even purchased a new Vitamix before leaving NOLA with the plan of using it to create smoothies, soups and other things I could eat.  As it sits, I am drinking clear liquids of all varieties just for pleasure as they simply drain out my G-tube which is now unclamped 24/7.  It does give some satisfaction but I wish I could do more than just the clear liquids and wish I were getting some calories from them.

The TPN seems to be doing OK at this point with around 1900 calories in each bag and my lab numbers seem to be relatively stable.  My kidney numbers are returning to normal (for me) and my liver numbers are all within normal ranges except for alkaline phosphatase which is high but not the crazy high we had been seeing.

Of course, we need to eventually fix this perforated bowel.  The hope was to do this locally but we have been advised by too many sources to head back to NOLA for the repair.  We don't want to go but at least it will be after Riley and River start off to college, leaving just Forrest home.  We are now looking into how to manage this last little bit.  Forrest may stay with some friends or my parents might come down to help but we don't quite know at this point what we will do.

Stephanie also cannot stay down there for the full time because she needs to be at work as well.  Perhaps she will fly back after I have been stabilized post surgery and come back to NOLA on weekends until I am ready to come home.  I don't know and we haven't really decided on the best path at this point but we will need to make some tough decisions.

Hopefully, the surgery will be relatively quick and easy this time.  We will not be planning a 12+hr marathon to free up the bowels, just get in, reattach, and get back out.  No attempts to remove obstruction, no work on the liver, nothing except repairing the perforation.  That said, a 'quick and easy' surgery for me will still likely be a 6hr affair which is still quite extensive.

Long term, I don't think this is a good sign for the double balloon enteroscopy.  This seems to indicate my bowels are too fragile to handle significant manipulation.  I hope there still is a chance but honestly believe it is not likely an option at this point.  I know it likely means I won't ever eat again but I am slowly coming to the point of acceptance.  I still crave food and I desire eating again but I will find a way around it.  If I am at least able to do clear liquids, that will help a bit with the social aspects but it will still be hard.