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.
Thursday, July 28, 2016
Monday, July 18, 2016
Home again, again
I know I have been delinquent in posting but I have had a lot to process and it is difficult to know what to say. Obviously, there is major disappointment at the failure of surgery in NOLA and trying to understand what that means for the future has been consuming.
We are home now with some odd plans let me bring you up to date. Surgery failed and there is not a chance of trying again. Dr. Boudreaux said that this is the first case in fifteen years that has stopped him. My bowels are simply too encased in adhesions and too fragile to try again and he took it as a personal affront that he was unable to repair me. My problems are no longer directly cancer related and there is no cancer cure that could be developed to resolve the bowels.
We did leave NOLA with a remote possibility: a double ballon enteroscopy. This is a procedure similar to a normal eteroscopy but the use of an inflatable balloon allows the scope to inchworm its way deeper into the bowel. This could allow the placement of stents if the obstruction is found or dilation with the balloon to free up the bowel.
It is a fairly new procedure, introduced just in 2001 and there are doctors in NOLA and in Denver that perform this procedure. The downside is that adhesions and a fragile bowel can prevent performing the procedure which means no one may be willing to perform it on me. It can also be done from both ends of the digestive tract so we would probably do that to reduce risk if we can find someone to do it.
So, Thursday, home with a plan to begin investigating this in a couple of months while I recover from this surgery. Friday, I was feeling weak and had some serious stomach cramps building but I chalked that up to the travel the day before and a poor nights sleep. Saturday morning started with more cramping but I am used to that with the obstruction but then I felt nauseous and went to the bathroom with dry heaves. When I stood up, I noticed that the the front of my shirt was wet. Looking inside, I saw that fluid was coming out of my belly. Not good.
We quickly gathered things and rushed to the ER and were excited to see that the parking lot had lots of spaces meaning we were guaranteed of being seen quickly. We got back into a room as I continued to ooze and spurt from my incision which had dehisced. After two CTs, one with oral contrast, we verified that my bowel had perforated and that it was then coming out the small opening in the incision.
Fortunately the perforation was 'contained' What this means is that the output of my small bowel is contained to a small area of my abdomen and then it found the weakest point and broke out the incision. I have continued to drain a large amount of fluid which is very green in color, looking very much like the stuff that had been coming out of my PEG tube and out of the NG tubes I have had.
Dr. Mathis consulted with Dr. Boudreaux and they believe the best course of action is to allow the bowel to head before going in for surgery to repair the perforation. So, the plan is to take the next 5 weeks at home, allowing the wound to drain and the bowels to become a bit stronger than their current wet tissue paper condition. At that point, we will have to do another surgery to repair the perforation which will not likely heal on its own.
What does mean? Obviously, it delays things significantly again. Surgery is going to be difficult but I am tending to having it here rather than NOLA. This may give even more indication that the double balloon enteroscopy should not be performed. I have no idea what it means for the future. I don't know what surgery will bring and I don't know what it means for our plans.
We are home now with some odd plans let me bring you up to date. Surgery failed and there is not a chance of trying again. Dr. Boudreaux said that this is the first case in fifteen years that has stopped him. My bowels are simply too encased in adhesions and too fragile to try again and he took it as a personal affront that he was unable to repair me. My problems are no longer directly cancer related and there is no cancer cure that could be developed to resolve the bowels.
We did leave NOLA with a remote possibility: a double ballon enteroscopy. This is a procedure similar to a normal eteroscopy but the use of an inflatable balloon allows the scope to inchworm its way deeper into the bowel. This could allow the placement of stents if the obstruction is found or dilation with the balloon to free up the bowel.
It is a fairly new procedure, introduced just in 2001 and there are doctors in NOLA and in Denver that perform this procedure. The downside is that adhesions and a fragile bowel can prevent performing the procedure which means no one may be willing to perform it on me. It can also be done from both ends of the digestive tract so we would probably do that to reduce risk if we can find someone to do it.
So, Thursday, home with a plan to begin investigating this in a couple of months while I recover from this surgery. Friday, I was feeling weak and had some serious stomach cramps building but I chalked that up to the travel the day before and a poor nights sleep. Saturday morning started with more cramping but I am used to that with the obstruction but then I felt nauseous and went to the bathroom with dry heaves. When I stood up, I noticed that the the front of my shirt was wet. Looking inside, I saw that fluid was coming out of my belly. Not good.
We quickly gathered things and rushed to the ER and were excited to see that the parking lot had lots of spaces meaning we were guaranteed of being seen quickly. We got back into a room as I continued to ooze and spurt from my incision which had dehisced. After two CTs, one with oral contrast, we verified that my bowel had perforated and that it was then coming out the small opening in the incision.
Fortunately the perforation was 'contained' What this means is that the output of my small bowel is contained to a small area of my abdomen and then it found the weakest point and broke out the incision. I have continued to drain a large amount of fluid which is very green in color, looking very much like the stuff that had been coming out of my PEG tube and out of the NG tubes I have had.
Dr. Mathis consulted with Dr. Boudreaux and they believe the best course of action is to allow the bowel to head before going in for surgery to repair the perforation. So, the plan is to take the next 5 weeks at home, allowing the wound to drain and the bowels to become a bit stronger than their current wet tissue paper condition. At that point, we will have to do another surgery to repair the perforation which will not likely heal on its own.
What does mean? Obviously, it delays things significantly again. Surgery is going to be difficult but I am tending to having it here rather than NOLA. This may give even more indication that the double balloon enteroscopy should not be performed. I have no idea what it means for the future. I don't know what surgery will bring and I don't know what it means for our plans.
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