All of the pieces were together for us to leave today, but I told them we wanted to go Saturday morning. As soon as they said we could go, the best discharge time would still have been a couple of hours later. That would have put us in rush hour traffic and added at least an hour, if not two, to the trip. A midnight home arrival wouldn’t have been fun.
The pharmacy supplies were the first to arrive, followed by the wound vac. Shortly after, the wound care nurse showed up to change the dressing and hook up the new vac. It was just a dressing change, not the rough wound packing, though. This nurse is such a riot; I saw her in the elevator on the way back with coffee, and she was giving me a hard time. She was telling us stories the whole time she changed the dressing. Some were very inappropriate but hilarious; let’s just say there are more wounds in the genital area than you’d believe! I’m sure it’s not often she feels comfortable enough to share those stories with patients like that. The wound vac controls were locked, so patients couldn’t change them; she showed me how to unlock it and change the setting myself. She also gave us her cell number just in case we had questions.
Pain management is the name of the game now. We had them up the dose on the oral med, but that didn’t work. The nurse wanted us to wait 24 hours into the new dosage to see how it would do. I was adamantly against that; I said no, we need a different one. We didn’t want that to hold up the discharge tomorrow. They changed it, and it seems to be working better now. She’d been resting more but was still nauseous. Some of the sleepiness is from the meds that IR gave her when placing the PICC line.
I snuck out to take the tape off the Yukon’s windshield. I needed a break, too, so I sat in the car and organized maintenance receipts for a bit. I also removed part of the upper console to find a piece of something that had been rolling around, driving us crazy. No luck, but I did find exactly where it is; I just need tools to get to it. I remounted the jack and tools that hadn’t been placed back correctly. I think I needed something non-medical to take my mind off things.
It’s been a long time since I’ve been constantly in the hospital with Amanda. During COVID, I couldn’t stay the night, so I realized it was best to stay in the hotel for myself. On this trip, I needed to stay for the first couple of nights in the hospital anyway, but our budget required me to stay all of them! Our go-to hospital changed brands, and the rates went up about 50 percent. Then, since the transplant, they’re up another 50.
Caretaking is hard, and I don’t think many realize this until you’re in that spot. It’s been a while since I’d been this involved in the caretaking and advocating for Amanda. I’m not saying it’s not hard for patients, but they are medicated during hospital stays. I don’t get the breaks that the pain medicine brings or get the surgery sedation, and ensuing naps; caretakers feel everything. I’m not saying I want to pop pills or anything; I’m just saying that helps patients sometimes. It’s emotionally straining; I talk with Amanda, but not about everything. Especially about finances and anything important when we’re in a situation like this. But in the back of my mind, I’m calculating everything from finances, to my work, to all the things will need back home when we arrive, and so on. There’s so many more caveats this time with things we have going on, too
During the transplant days, I realized that I needed to take care of myself as well. I would leave the hospital a little early and go to the bar next to the hotel we would eventually live in for a few months—live in the hotel, not the bar, that is! I would sit outside and write my post and sometimes have a beer or two. It wasn’t about the beer; sometimes, I’d just have water. That was me time, though. Even writing about the day and all the medical stuff, it was still my time. These posts are mine and more for me to decompress and process than to keep everyone up to date, hence why I do them at night. Maybe that’s why they are getting longer with today’s double posts; there’s been more to process!
Much to Amanda’s displeasure, the surgeon never came by. I’m preemptively mad at them already, too! I know the weekend discharges. We’ll likely have another surgeon rounding for the weekend, and sometimes they round late. I’m really hoping we can get out of here before noon. Things will really have to be lined up perfectly for that to take place, though. Unless something crazy happens, we will still get out of here Saturday, though.
By dinner, Amanda still didn’t feel like eating. I’d been wanting Chinese, so I ordered out. It was subpar, especially the price. The eggrolls were great, though. And huge—I’ve had burritos smaller than those things! Amanda thought she would be able to eat some white rice and soup but couldn’t even handle that. I almost went to get my mini chocolate cake I missed out on getting for free last night. Amanda has emotional fries, but I’m more about emotional support sweets, kinda guy!
It’s Friday, and you can tell. The halls and lobby have been quiet since five. As I was walking them, I thought of those going home after visiting, some with kids at home. It would be so hard if we had kids; I don’t know how we’d have made it with as much hospital time as we’ve had. Amanda would have been spending a lot more solo time admitted, that’s for sure. Amanda even mentioned how bad this trip would have been just a few weeks ago with my mother’s health.
I’ve been thinking of kids a little more lately with my mom passing. They had me at the age I am now, so that’s had me pondering ever since I started working on the eulogy. I don’t regret our decision not to have kids; it was made with Amanda’s health in mind. Also, I just can’t imagine how we’d have managed with all we’ve been through.
Amanda is so much better post-transplant than years ago, but she still couldn’t keep up with a little one or even a teen’s busy schedule. I still can’t help but wonder, though. God has guided our decisions and leads us still today. We are comforted in that. He’s given us a big family and lots of kids through the church. The nice thing is we get to give them back, especially when they are bad!