I frequently wonder whether I need to qualify my reports that Joey is having a good day/something went well with the reminder that he generally feels like crap, but there are times when he feels less crappy. It’s a tricky balance between getting everyone’s hopes too high and being overly negative/depressing in my reports. Take yesterday for example. Pro: he is awake a hell of a lot more than he was before I went to PR, we got to go on a walk, and had lunch with Ed and Debbie. That’s pretty exciting. Con: when we got back to the hospital his pain got worse and he puked up the lunch he had eaten. Pro: at least he got to taste it twice. Always look on the bright side of life…
Basically I just wanted to throw out the reminder that Joey still needs a liver transplant and won’t be feeling 100% for quite a while. They are still tinkering with pain meds, so although he has some days/hours that are better than others, he is still in pain pretty much all of the time. Just sometimes are worse than others. And he’s gotten pretty good at dealing with it so it’s not obvious.
Today was a so-so day. A new mysterious pain has appeared on his non-liver side. Tomorrow some tests are going to be done to see if they can figure out what it is. Apparently it happened once on the weekend, then went away for a few days, reappeared today, then decreased again tonight. Hopefully it fucks off for good.
Thanks for loving my baby.
PS When I read Joey this post, he asked me whether “fuck” was on my dad’s list of approved swear words. No it is not. Egads!