One bowel fluid storm after another

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.

Many hands make for light dressing changes

This is not our first cancer rodeo. We are a bit of an anomaly with our 24/7 supervision and detailed notebook of documentation. This second round of surgery watch has been a little easier than the first just because we aren't surprised by every single thing. There are still surprises, mind you. Finding that Rich had stitches with dressing packed in them versus the staples he had last time was one huge surprise. It's been the most stressful thing about post-op so far. Twice a day they have to pull out the dressing and repack it with new dressing. It takes 30 minutes at least and is very uncomfortable. So we've been learning how to make that as smooth as possible.

I came back to the hospital room around 9:30pm last night and there was a bit of a hubbub in the room. Rich looked utterly fed up with everything. His dad said that the night nurse had come by and Rich was not a fan of her. She was apparently pushy and asking about walking and saying he needed to get his dressing changed three times a day versus twice a day. Rich was not happy.

Rich Sr went back to the hotel for the night, leaving Shannon and I for the overnight shift. I was again doing my part as a heartbeat in the room while Shannon was being the brains. I talked over the dressing change with Rich and told him that if she was not good at it, or if she was doing anything he didn't like we could get the charge nurse. I wasn't going to go on a rampage or pick a fight with the nursing staff. We were just going to make sure they were aware that the dressing change is A Big Deal for us. I felt confident that Shannon and I were well adept at being kind under stress and we would not have security called on us.

Around midnight our night nurse stopped by. I was prepared for a Nurse Ratched, only to find this quiet Japanese woman. She asked what time we wanted to do the dressing change and we requested 5am. I told her that we'd like a 10 minute warning so we could start the morphine pump and get ahead of the pain. She said that was fine and she would be gentle and slow. I thought to myself, "This is bossy?"

5am came and Nurse Rina came in with all her supplies and a smile. She brought enough gloves for Shannon and I to participate as much as we wanted. She explained everything she was doing and was very gentle. It still sucked, but it sucked as little as possible. Rina was in charge of removing dressing and repacking dressing, I was in charge of cutting the dressing and holding Rich's hand, Shannon was in charge of the iPhone timer for the PCA morphine. We got through it in 30 minutes flat.

Rina thanked us for letting her do the dressing and wished us good night. I later discovered that when Rich's dad had left, he stopped to tell Rina that Rich was very sensitive about the dressing change, both physically and emotionally. He asked her to be patient with him and if he was grumpy with her to not take it personally.

When I was walking Shannon to her car this morning, she said she felt like she hadn't done anything. It was funny because I felt like I hadn't done much overnight either. And Rich's dad wasn't even there overnight. But each of us had a small job. Just because we don't feel overwhelmed, doesn't mean we're not doing what we're supposed to. It's actually just proof that Team Stryker is performing just like it should.

Onward, Christian meddlers

I was dozing on a sofa in the waiting area when Laura woke me up to say I was being paged. When I saw it wasn't a phone call but our surgeon Dr. Shen, I knew things hadn't gone as we had hoped. There was no magical slime removal that took 12 hours and ended with Rich being cured. Dr. Shen went over the details of how much tumor he could remove and how much he had to leave behind. He discussed how my husband will have a tube running from his small bowels to the outside of his stomach along with several drainage tubes and staples. He talked about the possibility of sending us home on intravenous nutrition if he was still not able to eat. It was all a little overwhelming.

Once he left, I started to cry and Laura came over to hold me. Laura is well endowed and I was able to just bury my face into her right boob and sob. That was her entire job today and she was kicking ass at it.

Suddenly there was this old man standing over us, his arms embraced around our Vishnu tangle of arms and legs on the sofa. He was inches away from my head and cooed, "I'm praying for you, girls. It looks like you got some bad news."

I didn't get a good look at him, preferring to keep my gaze into Laura's right armpit and contain my snot to her pullover. Laura said "thank you" in a way that actually said "leave us alone." Her body language with me was very loving but her tone would have withered a tree. And yet he stayed. Laura followed up with a simple, "We're covered," pointing to the cross around her neck (which I was ignoring in favor of the comfort of her 36FFFs). And still he stood there, smiling and murmuring creepily.

Laura opted for distraction, like throwing a tennis ball for a dog. "We could use some tissues." He nodded and just made that "mmmm" noise again. At this point I was silently asking Laura's right armpit, "What the Actual Fuck?" Laura, undaunted, tried again. "Tissues? Could you find us some tissues?", she continued, touching the tip of her nose for emphasis. He paused and finally moved back just a touch, "What's that?"

Like a grizzly bear, I snottily bellowed into Laura's armpit, "MORE TISSUES! LESS PRAYERS!"

"Oh, ok." and he quietly retreated back to his bench, returning with two tissues. He still wanted to hover, but I think Laura's Jedi mind tricks were finally getting through to him. Even once I used his tissue, he continued to say over and over again, "I'm praying for ya. I'm praying for ya." The entire time, Laura and I held tight to each other. It's unclear whether our embrace was one of comfort or restraint, but the old man finally retreated back to his own sofa unscathed. That was my Christian act for the day.

The nice thing about the creepy old man is he quickly became the worst part of our day and if that's the toughest thing we have to endure today, everything is going to be okay.