You would not believe the shit ... well, small bowel fluid ... we have been through. This surgery has been a bit like a birth. Even if you have given birth to a child, there is no guarantee that the next birth will be remotely similar. There is a child coming out of the same body, but that's pretty much where things stop being predictable. In this case, we are performing a surgery on the same Rich. He is 18 months older but in overall the same level of fitness. We had planned to have the same surgery, but Rich came to Winston-Salem in much worse shape than he did to Baltimore. In Baltimore, he walked in on his own feet feeling fine. Here he came in shivering and curled up in the fetal position.
Post-op has been equally unique. Rich's incision is not stapled and needs regular dressing changes. He had an infection inside him that affected his overall health. Going through all this again with still no simple answers has affected his mood.
On Saturday around 11am we decided to try a walk. Rich wanted to try using the bathroom after that, so things were looking up. His bowels were waking up and doing well.
But during all that process, there was a lot of fluid. We talked to the nurses and they said that gravity could just be increasing the seepage. When Rich tried a walk Saturday night, though, we had a rush of fluid and had to abort. It took me an hour to clean him up.
By Saturday night Rich was very discouraged. He didn't want to try moving around because invariably it led to unpleasant floodwaters. Because of all this extra fluid, the dressing changes were pretty miserable. He told me, "There's nothing I can do but just lie here and wait for the next horrible thing to be done to me." That is hard for me to work with and I was getting frustrated myself.
We survived the night, or at least most of it. Around 4:30am, I heard Rich call out for me. Kim asked if she should wake me and he said he just wanted to talk if I was awake but she shouldn't wake me. I popped up and told him I was happy to talk. He'd had a nightmare and was worried I was giving up on him. I assured him that while I was frustrated, I was not frustrated with him at all. We were still hoping we could go home Monday or Tuesday, but that was a little overwhelming given the effort it took to change dressings and how difficult it was for him to walk without soaking all of his pads.
By the time we sorted all that out, it was time to change his dressing again. It took over an hour to change everything out and it was full of fluid. Very discouraging and pretty stinky. I finally got everything covered and sealed.
Not long after that, Dr. Hunter (the surgical resident) came in and pulled everything out to investigate. He said that it looked like Rich's small bowel tear was leaking and so we need to go back to no food or water and wait for it to heal. Going back in to repair it would just be more traumatic and it should heal fine on its own. Of course, we find all this out on a Sunday and there are no wound/ostomy nurses here on the weekend, so we are just going through gobs of gauze.
When Dr. Hunter left, things were all topsy turvy. We thought we were going home, and now he can't even get out of bed without effluence everywhere. We all sat there in a bit of shock. Dr. Shen came in a little over an hour later, though, and acted like all this bowel juice was no big deal. He was all, "oh, yeah, we'll just let things chill for a bit, and it should be fine." That was a little reassuring.
Except there was this detail of small bowel fluid everywhere. Just so you know, the stuff in your small bowels does not smell good. It doesn't look good either. And poor Rich was waging a battle against it all day. We tried a medium wound manager but there was fluid leaking out of more than we originally thought. So the day nurse and I tried again with a medium pouch, trimming it to its absolute limits. Needless to say, that also leaked, despite reinforcing it in various areas. The only way to keep him from leaking was if he didn't move at all.
I slept for a couple hours in the afternoon while Rich sat with Jack, frozen in place on his bed. When I came back he tried crossing his legs and it started leaking everywhere again. Many curse words were uttered. Having to sit in your own filth without the ability to escape it is demoralizing, disturbing and disgusting.
But then the heavens opened up. I went to get his night nurse Rakita and told her I needed more supplies and a new pouch to try. She came in and said another nurse on the floor used to be an ostomy nurse and she could help. In walked Lori, with a pile of pouch supplies and a smile. She spent an hour crafting a new pouch for Rich with my help. And by 9:30pm, Rich was finally clean and dry.
When Lori finished everything, I told her she had saved the day. I told her I wanted to hug her, but she was way across the bed and we were both gross. She smiled and said she understood.
I'm happy to report that Rich stayed clean and dry all night, despite our olfactory vigilance trying to find any leaks. Dr. Hunter came back this morning and said we'd try one more day of no food or water, though Rich can have ice chips. No one seems concerned about the leak so long as it's draining. And now that it's draining into a sealed pouch, we can finally stop being so concerned.
Dr. Shen just came in and said we can still go home with the wound manager once we make sure he's staying hydrated and doing well. So there is still hope we'll be home by the weekend.