I'm not sure I've explained what IV's actually are, have I? In case you're not sure, by IV's we mean a course of intravenous antibiotics. When the drugs don't work (by mouth or nebuliser to his lungs) then IV's are the heavy artillery of bug killing - by feeding the antibiotics directly into his blood. At first he had a normal cannula (a short line, in his hand) but this was then swapped to a PICC line (which is a long line, from his elbow right up to his chest). The advantage of this is that it should last a lot longer, hopefully for the whole two week course, whereas a cannula would only last 1-3 days using it as much as we are. It's also much more comfortable for him. The disadvantage of a PICC line is the risk of infection, which is why have to be so careful when mixing and giving his IV drugs. We have had PICC lines fail before (becoming blocked, or tissued) so we are really hoping that this one lasts the whole course. He was very brave having it inserted on gas and air, but it took two attempts, and it's a long and sometimes painful procedure, so he would be very disappointed to have to do it again.
For my CF friends reading, he is on Ceftaz and Tobi, for assumed Pseudo again, although his last culture was lost in the lab so we're still waiting to hear what he is currently growing. We've started hypertonic saline again (which he is tolerating much better than when we last tried it), salbutamol, and may start steroids next as his LF is actually down from when we first came in. He is really productive with physio - so we assumes it's just lots to shift. We are just swapping his three times daily Ceftaz to twice daily, in the hope we can get home in a few days and he can get to school some of the time.
We had some weekend leave today, so took him home for a few hours. I felt OK until then, but crashed in the afternoon. Napped for an hour or so. Think it's all catching up with me.
It's odd being on the ward when he is outwardly very well. I mean, he is coughing a lot, but is eating fine, and running round with the physios. He tires quickly, but he feels, kind of OK. You have other kids come in with acute problems, or post op, who seem so poorly, but then they're home in a day or two, while we are still here. It's also funny how quickly you become institutionalised. It feels normal now to be popping down to Costa in my slippers, microwaving M&S ready meals for my supper and lying awake at night to the sounds of hushed voices, machines beeping, and babies crying.
We need to see an improvement in both his cough and his lung function by Tuesday (next test). I don't want to accept that we might slowly be losing some LF with every infection that we're not ever going to get back. He's just too young.
I'm sorry, I think I'm over tired. Will be back to CF butt kicking positivity in the morning! I'll leave you with a picture of my boy on the beach (can that really just be a couple of weeks ago?) surfing on, despite the thunder clouds looming over.
Huge thanks you's to our visitors for keeping him going, our parents for helping with the girls, Dan for always being there and coming to watch us sleep (love you) and biggest thanks of all - to the AMAZING NHS Trust with whom we sleep tonight.
Sweet dreams.
