Making plans

Peter's recent CAIR appointment went as hoped.  We met with Dr. Jennings and Dr. Kamin together and the topic of surgery for the fistula was revisited.  Peter' fistula continues to put out 3/4 to a full liter of fluid a day.  Dr. Kamin is rightfully concerned that we will end up back in the hospital for sodium issues if we are not careful, and that playing hospital at home is tricky and not without serious risk, so the feeds will remain at a standstill as to keep the fistula from continuing to rise in output.  Dr. Jennings is in agreement then that we should revisit surgery if we are in such a tenuous place in the medical management of the fistula.  Of course the same concerns about surgical risk exist as they did before, mainly centered around post-op recovery.  Dr. Jennings came up with another idea as to how to close the fistula as he was examining Peter, which would be to close the skin over the fistula, as it seems that the drainage would continue to travel further down through the intestine if it were just not allowed to exit.  If I understand correctly, he suspects that the intestine where the fistula is presses up against the abdominal wall, and that we could use the abdominal wall to close the fistula instead of actually trying to cut out the part of the intestine which contains Peter's very vascular fistula.  This would greatly reduce the risk of bleeding since Peter has a huge collateral vein that connects to the fistula, and it would be a less complicated surgery by far.  The downside is that there would be a good chance that the fistula would end up coming back at some point.  The plan is to admit Peter for more abdominal examination which would involve scoping the fistula and a more thorough manual , evaluation of the fistula.  Drs. Kamin and Jennings would team up together to evaluate and decide if this would potentially work.  We are hoping for this to occur sometime soon in the new year.

Additionally, Peter continues to have small red spots on the left side of his chest, his left arm and hand are noticably bigger than the right, and the spider veins he has on his face seem to be more in number on the left than the right.  The spots have been continuing to slowly develop over the last year, and there seems to be one now on his lower left eyelid margin.  Dr. Kamin has suggested that we consult with the vascular clinic at Children's Boston, which is world-renowned.  We have agreed that this sounds like a good idea and are waiting to hear from them as to what steps we need to take to investigate if this is a vascular abnormality or just a strange phenomenon for Peter whose medical progress doesn't follow the norm anyway.  

Apparently the American Academy of Pediatrics has just come out with an officialy statement that probiotics should not be used in children with a central line, due to infection risk.  Dr. Kamin brought that up as he felt it necessary that I know that, however he was also appreciative that Peter has been on probiotics for two years and has had no infection, so he is in agreement with our continuing to give Peter probiotics to keep intestinal bacterial overgrowth at bay.

We are also attempting to take Peter off Protonix.  He has been on it for years, but there are risks to staying on proton-pump inhibitors, with one of the risks being to bone health.  He does not show signs of needing to stay on it for reflux anymore, so we are starting a slow reduction and hopefully successful cessation of the medication.

Will post more about the plans for surgery and vascular clinic as we know more.