Back at Home

Hi folks! I figured I was due for an update here.

I went in the hospital last Monday and came home two days ago. Things are going fine, though this time I'm dealing with a super resistant strain of germs. There were two bugs in my system this time, like usual, and one of them was resistant to practically everything except for two medicines, and even then it wasn't 100% sensitive. My doctor is currently on a trip to the holy lands, so the pulmonologist we also work with was filling in. I like this doctor too; he is aggressive in treatment and in getting things taken care of. He's also fairly easy-going, flexible, and kinda funny too.

So this doctor had been working closely with a pharmacist there to figure out what drug (of two choices) would be best case for us. Oh, and did I mention I'm allergic to both of the options? So in addition to that, I had to go through yet another desensitization process for the med we chose, which is a penicillin. As a crash course, if you're unfamiliar with that term, "desensitization" is a methodical, timed out process where they slowly introduce an IV drug into the system. It starts with like 0.01 grams, and you work up to a full dose, and it lasts about 5 hours. I met the pharmacist a couple times too, and he did a whole lot of math and analyzed things in my system that I don't even know about and chose the best possible way to deliver the drug, which would be every four hours. Typically it's every 6 or 8 but, again, for reasons beyond my scope of medical knowledge, he figured out that every four hours would be best. But... only for 30 minutes every time. So whew, not that bad.

All of that went fine and I have not had any sort of reaction at all to this day.

I came home this most recent Monday, two days ago, and have been doing home IVs. It's been going fine, but my schedule is demanding. I'm hooked up to meds for ten hours a day. The meds come in these little balls which slowly deflate, pushing the medicine in thanks to gravity or something like that. So granted, it's not like I can't do anything while these are going in, but I'm basically under house arrest. Not to mention, like I said, my one med runs every FOUR hours, and instead of a half hour like in the hospital, it takes one hour here at home. So the most time I ever have between doses is three hours, and yes this includes overnight with sleeping too. So yeah... demanding.

I'm feeling better, though still would like to get even "more better". I'm not super concerned about the resistant strain of bugs I'm growing right now. Maybe it's because I worked through all of those emotions last time when we thought it was going to be uber resistant, and it wasn't, but when I look through my entire history of cultures, each one is different. I am hopeful and have faith that next time, we'll see a different bug as well and will treat it accordingly. 

But I'm glad to be home and sleeping in my own bed. Jarrod had an idea to figure out a way to set up my meds and such in our bedroom, and I bought one of those plastic storage drawer thingies on wheels, rolled it in next to my nightstand, and tried it out last night. I must say, I think this is going to be one of the best things for handling this (I have to do these thru next Monday or Wednesday.) I feel much less tired than I did yesterday. There's just something about only having to wake up and walk a couple steps to hook up to the meds, versus walking across the house to the kitchen where I used to always do everything with my IVs. I don't have to wake up as much, in a way, so falling back asleep doesn't take as long. So props to Jarrod for coming up with that!

I'm also glad to be eating my own food, or whatever I damn well please (AND I got popsicles just in time for the hot weather! Popsicles should be enjoyed at any age, don't judge lol.) The food at the hospital has sadly gone WAY downhill since I first started going there. They've removed many choices from the menu, and the quality of the food has also gone down. For most people, this wouldn't be a big deal because their hospital stays are short. But for us CFers, who are there for 1-2 weeks, it's terrible. You can tell they're really cheaping out on the food, which is sad. No, people don't expect the food in a hospital to be amazing, but these days there are few excuses for it to be borderline inedible. In addition to that, the people working in the kitchen suck. I don't know if they just don't care, if they have no one doing quality control, or if there's a communication issue, but at least once a day my order was wrong or missing something, and I heard from the nurses that this is common for everyone; having that many mistakes every day is ridiculous. It's frustrating. So even though I'm not quite feeling up to cooking a bunch here at home, since I'm trying to get sleep when I can (three hours at a time), I'm still SO happy to get away from the hospital food.

That's about all I've got. I'm happy to have my dog here with me. I think she is tired because she wakes up with me when I get up for my meds during the night. So she's been a pretty lazy, sleepy dog, but that's okay. She was excited to see me when we got home, which warmed my heart so much.