Measuring progress one cc at a time

It's been a rough week at times, but we are still making progress. Sunday night, Rich left the house. We all went to Sonic for milkshakes and a diet cherry limeade for him. He didn't have to get out of the car, but did leave our property. Monday I took him to Great Clips for a haircut. He didn't get a washing because they don't offer that service, but he has a lot less hair now and looks more like himself and less like a hobo. So that was a success.

Monday night was hard in that Ian didn't fall asleep until after 10pm, I stayed up until midnight so I could disconnect Rich's IV (the beeping scares the dog), and then at 4am Rich's wound pouch leaked. We spent from 4am to 6:45am removing, cleaning, assessing, showering, crafting, measuring, reapplying and recovering. At 7:30am, Ian woke me up with an X-wing in my face asking if he could take it to Jenna's.

You know when you get so tired that you feel drunk? That was my Tuesday and Wednesday. I didn't get a chance to nap because of follow up wound maintenance and work stuff until Wednesday. When my mother called me I had no idea what day/time/planet it was. It's alarming.

Tuesday Rich went to Sonic again. Wednesday he had to get yet another new wound pouch and that put him in a funk. He didn't leave the house but did climb the stairs once. I also got furious with the Sentara nursing staff because they showed up on Tuesday night at 10:30pm to draw labs. I was not happy with them. She came because the labs they drew on Monday had an error but the number they had on file was Rich's cell which is set to silent 99% of the time these days. And woe to the poor woman who called Wednesday morning saying she would be out for Rich's regularly scheduled labs and I told her, "oh, no you're not!" Shenanigans.

Thursday got a little better. Rich went to Zero's with us for dinner and pinball, so that involved exiting the car. But I also got rear-ended on Thursday while trying to find a medical supply store to get more wound pouches for Rich. Thankfully, it was just a bumper mushing and the car drives fine. The lady who hit me was super nice too, so all told it was the best read-ending I could hope for.

But that was the lead up to my coming back to the house without ostomy supplies, hoping the wound nurse would show up with some emergency supplies for us and that Sentara could send someone Friday with new pouches. The Sentara nurse called to tell me no one could make it out until the next day and started in with, "In the future, it would be good if you don't wait until the last minute to request supplies ..."

I did not yell. But wow, did I give her a piece of my mind. We came home on Thursday the 3rd. We did not see a wound nurse with ANY supplies until Wednesday the 9th! That wound nurse said that the largest output she had dealt with personally was 1000cc a day and that person could only get a pouch to last one day at best. We were collecting over 2500cc at the point and I was able to keep a pouch working for at least two days, depending on the circumstances. We have been neglected as far as supplies all along and the wound nurse assured me someone would get me supplies immediately since I used the last of any pouches that would fit on the ever changing wound landscape. So don't chide me about being unprepared or incommunicative about supplies. I am the best wound nurse in Southeastern Virginia at this point. Just bring me my small Hollister brand pouches, more 2" ostomy seals, some foley bag tubing, some medium sized gloves, and leave the sass at the office.

I got my supplies Friday morning. And it's a good thing because when Rich and I tried to go to Tropical Smoothie Cafe for dinner, his pouch leaked as he stepped out of the car. Poor guy just can't catch a break. So we had to clean him up with baby wipes and let him wait in the car while we got dinner so I could take him home and put yet another pouch on him. That pouch has held so far, but I'm checking it every few hours just to be sure.

The fistula is healing because his output has gone down. It's just moving from place to place. The JP drains (one near each hip) are empty today so everything is coming out of the wound pouch. But his large wound at the bottom of his incision is no longer leaking any output. It's all coming out of a circle about 3/8" across. That one little hole, though, is still producing about 1300cc as of yesterday. Much less, but still significant. Setting up the wound pouch each time is like following a moving target. Should we cover the large wound or do we think it's dried up? How much extra wafer should we put in the incision line to prevent leaks? Should I wiggle around and see if I can get the JP drains to collect again? I felt like I was doing well last night that it only took me about an hour to replace the pouch. Needless to day, my back is killing me from leaning over him for that long. I have to wear a head lamp, put my left ear on his dick and then peer up into the wound to assess how it's doing. All part of the job description.

All the medical troubleshooting is not that bad, actually. The hardest part of all this is the emotional toll. No one likes to pull tape off of someone if he looks like it's taking his entire spirit along with it. That said, I was super proud of Rich last night. When his pouch leaked spectacularly as he stepped out of the van, I expected that to send him into a spiral of depression but he was a trooper. He walked in the house, took his shirt off, and casually watched TV while I worked. It was such a relief, at least as much as an emergency pouch change can be.

Today was good. We took a trip to Atlantis Gaming store for the latest D&D starter set and some Star Wars miniature game ships. He hung out in the car with Ian while I went into Home Depot for wall anchors. All told, we were out of the house for about two hours. I have a new policy where he has to cross the threshold of the house and go outside at least once per day. It can be to the end of the driveway or further, but he has to leave the house. So far so good.

This whole update was mostly a brain dump, but I just wanted to get it all logged before I forgot.

Ian has been great through all of this. He just wants to hang out with us, in whatever form that takes. He squeezes onto the twin bed in the office with Rich to watch TV. He brings his Nintendo DS or iPad to the stool next to the bed just to be near Daddy. He could not care less about the tubes. It just goes to show that more adults should take their cues from kids on how to deal with stressful situations.