Posted 10/4/2014 3:12 PM (GMT 0)
We are in decent spirits despite this mind blowing set back. I was joking last night- when I had been making his wound "talk" like a mouth I had it wrong.... It wasn't a mouth it was really another bumhole lol!!!
Not a case of knowing too much or just enough at all. With the blood counts being absolutely perfect even without the tests it has confirmed that it is a fistula. You don't have to dissect a duck to know its a duck. Have experience with these in my career and this means eventually more major surgery. The tract has healed for sure so basically not going to get anywhere or close on its own. I knew the day it looked like an abscess early last month after it was healed over and had the large pocket of fluid pooling underneath and was tunneling deep inside. Due to his heart issues no more surgery was already stated a couple weeks ago and this will be another major open bowel resection at some point. They will take him off everything by mouth and put back on TPN, have tons of tests to figure out how extensive it is, etc. He could very well end up with colostomy bag on this one if he survives. I think he will refuse to go to the hospital for this treatment and will fight to set it up at home.
At the moment no huge rush to get him into the OR though- It is as stable as can be for the moment. we will have this properly examined by experts and work to get him in a better place nutritionally and strength wise- he will need his stress test to determine extent of cardiac damage, maybe others.... Nutrition is paramount and they will take him off PO foods back on TPN, maybe even NG tube again. Getting him in a healthy place is what is needed before any decision to repair this. In the meantime its going to require very close management of so many different things- he is losing electrolytes, nutrition, etc through the leak. Who knows how much of a pocket is pooled up inside but given his severe nausea and vomiting and continuing pain that is a danger we need to follow closely. The risk of another obstruction is great at the moment.
Sadly Sal I think the only ones who don't know the whole story are the surgeons who have done a dismal job on him and just keep screwing up time and time again. We know he may not survive another surgery, barely made it through the last one. I raised the alarm on this being a possible fistula weeks ago and nobody listened.....again..... so again I failed to protect my most precious patient.
I will be fighting to have many experts on this now as well as outside specialists and second opinions as well. Main thing is get his strength up, get the tests done to determine how bad it is and where its coming from exactly and the extent of the tunneling. What else is in there I wonder?
Here is a good article we found.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3341456/
I am glad we have palliative care team to help us navigate this some- the doctor is amazing and will help us get referrals and expert opinions.
The good thing is that given any complications popping up, this could be stable for a while and we probably have time to truly investigate, find a better surgical team (and multi-specialty team) to help us deal with this properly and increase his chances of surviving another surgery. Only thing is now he is saying he is refusing any more surgery even if he is told he needs it... Given the risks I hope we can wait until after the holidays just in case this turns badly. We already know he doesn't do well with any surgical interventions and that it seems his is always the worst case scenario. Its like a bad dream...
On an aside, his end of visit summary again listed the mets to bone and liver. We are beginning to think the liver mets was a entry error and she meant to type lungs. There were no spots in his liver (although some in kidneys). That would make more sense.
So this weekend, we are living normal. Relaxing, maybe shopping for clothes that are not falling off him.... and scrubs that fit my zaftig figure since I have been eating poorly lately.