Today has been a really active, exhausting, kind of crazy, and (we hope) productive day. I’m still in the hospital and still don’t know for sure when I will go home. But some decisions were made, and some action was taken.
No bacteria grew from the culture. Apparently, it’s unlikely that anything will grow now, but not impossible. So they want to check on that one more time tomorrow.
There is still so much about this that we don’t understand, so Scott and I asked how there could be an infection without any growth in a culture. Basically, we were told that one of two things has to happen: 1) either they don’t get a good sample for the culture, or 2) the culprit is a finicky bacteria that is really picky about where it will and will not grow (loves the human body, hates petri dishes).
Either way, they are moving forward with a very aggressive treatment plan to try to hit any possible enemies lurking in my body. If the culture should surprisingly grow something tomorrow, then they will narrow the plan a bit and attack the identified bug.
A PICC line (a long, thin tube that’s inserted through a vein in the arm and passed through to the larger veins near the heart) was placed in my arm today. I seem to be stuck in a place of attracting rare and unusual things, and that happened again during my PICC insertion. Thankfully, we don’t think it was a huge deal, but certainly not fun. Our kids have had plenty of these done, and they have always been no big deal for them. So I was prepared for a quick and easy procedure. Unfortunately, as they were threading the line through the vein, they hit a nerve. Such an ouch! This is, according to them, very rare but does happen, and can even result in nerve damage. There doesn’t seem to be any damage, just soreness, so we hope that will resolve quickly and be the end of that little adventure.
The ID doctors, as I said, decided to move in with pretty big guns and start two powerful IV antibiotics, plus one oral one for at least two weeks. They started those new meds this afternoon with an initial mega dose for one of them. They were also running that one in at a pretty fast rate through my PICC. About fifteen minutes after the beginning of that infusion, I started having really intense itching all over my scalp. This kept getting worse, and then I began to develop a rash.
My nurse immediately said it looked like “Red Man Syndrome.” Really? Did you just make that up? Because it sounds like not a real thing, and maybe also even racist.
Nope. It’s a real thing. She called the pharmacist and he told her to slow the rate of the flow and that I should respond to that. And I did! While this wasn’t something super rare, it was unusual. I’m beginning to just wait in fear all the time for the next crazy and rare thing. And I’ve decided I want the next rare thing to be the discovery that some unknown multi-millionaire relative somewhere just died and left his fortune to me. That’s the kind of “rare” I’m ready for now. Enough of the bad rare stuff.
They want to watch to see how I respond to infusions overnight to make sure I don’t have a repeat of that reaction (or any others), but they did work hard to line up a home health nurse (just for periodic check-ins on the PICC line and for blood draws) and the delivery of home supplies for the PICC line. There is some hope that I could finally go home tomorrow. I’m just staying focused on the right now. I can’t look past the moment I’m in.
The good news is that we are pretty sure that we’re suddenly seeing some glimpses of very small improvement in the cellulitis. Those areas seem to maybe be a little bit smaller and softer, and the pain actually seems to be just slightly better — not quite as sensitive to touch. So maybe we’re starting to get somewhere. And maybe things will go even faster with these more powerful antibiotics. We’ll see what the next twelve hours show us.
Scott took some time this morning to do a pretty thorough pulse check on everyone’s emotions before heading back to the hospital. He probed a bit to get the younger ones to share their feelings, and they responded well. The older kids reported that this seemed to help kind of reset them all again for another day of uncertainty and my absence.
Once again, thank you so much to everyone who is making it possible for me to focus on healing, for Scott to run back and forth every day, and for the kids at home to take care of each other and the younger ones. We could never do this alone.