That silly little strawberry mister Master Pravus bought me. Ha ha, I bet he wishes he never bought it for me. Every time we are leaving the house, I dash around real fast with the mister and spritz the anthurium which is practically a pile of brown stuff.
“It’s dead, Kitty.”
“It’ll come back!”
“Well, at least get the mint and tomato plants while you’re down there..”
The rash from that allergic reaction seems to be clearing up some, finally. I mean, it’s only been a little less than two weeks! It BETTER be healing, am I right?! The nurses told us initially that we should leave the needle in still, but just put gauze over my port and just keep changing the gauze daily until the port heals. The trouble with that was that it wasn’t working at all. The biopatch was constantly crusting up and it became unsafe to do that. I have a bunch of blisters all over the rash, and since the biopatch would cover that part of the skin, it wouldn’t heal at all. Great. So, Master would constantly have to take my needle out, clean everything, and reaccess me. We were terrified I was going to get an infection and we have been infection free still with this port and don’t intend to start now! So, the only answer was to completely deaccess me after each infusion, and reaccess me each night after he got home from work. The biggest problem with that? It’s awful. It’s already incredibly difficult to hit my wonky port (it’s angled funny, and very wobbly) and no one wants to take a needle to the chest every day either. It’s much better to stay accessed every day and swap the needle out once per week. It just couldn’t heal that way though, and also my skin wasn’t tolerating even paper tape on it, due to the allergic reaction! Awful.
A couple of nights ago, though, the skin seemed to be handling the paper tape that we taped the gauze on with (for the infusion itself) so we thought you know what? Let’s see if we can leave this thing in overnight for a night or two. I’m finally getting to the point where I can sleep with gauze on my needle while the rash heals, thank goodness! Now I can go back to having my infusions first thing in the morning, and feeling better during the day. Whew! It seems like a small thing, but getting my fluids at night really doesn’t do me a heck of a lot of good. It means I sat around all day feeling awful in the heat only to get rehydrated right before I go to bed. Joy. So for right now, we’re at the point where the nurses thought I should have been initially. I’m finally healed enough to handle the wimpiest tape there is while we leave the needle in overnight. Woo!
While talking to the nurse on the phone the other day, she said that she forgot that she hadn’t tried Sorbaview with me, and that she actually does carry it. ::Eye roll:: I don’t want to use the word angry, but that’s kind of the word I feel right now. Because of her “forgetfulness” she used that hideous Duoderm on me instead of a “real” dressing and I am in an awful place right now with my port. I didn’t say anything. She sent us a bunch so that as soon as my port heals up we can try that and see if it works but at least now we don’t need to buy it ourselves.
She also apologized and said she forgot that I have a port and not a PICC line, and she said she’d been sending us the wrong accessing kits. How could she forget? We talk to the same woman every week since about April. I mean, it’s not exactly like I’m being passed from rep to rep? Plus, we talk about “my port” an awful lot. We already knew that, but we were told that they didn’t have port kits because they didn’t have many port patients and we just had to “adjust” the kit by adding an outside needle to the PICC kit and ignoring the extra things that come in the PICC kits. She told us this time that they DO have the port kits and she’d send them from now on. >.> What the frick? I mean, it’s not the end of the world. It’s just a lot less comfortable to use the PICC line kits on a port. The sponges etc aren’t the same. So now that they are going to send me my proper supplies.
Whelp. At least nobody has died and no infections have been had or anything. Still. These people sure are not making this easy, are they? Fuck nope.