CF | Hospital Stay #2

Hello! So seeing as I've been allowed home for a few hours I thought I'd do an update, I'll start from Monday night when I went into hospital. I didn't get a bed until about 9pm because it's so busy, I had to go on a different ward than usual because there were no spare rooms on the one I usually go to (as I have CF I need a room to myself to avoid cross infection from other patients...we're more at risk of catching things and if we do it's going to be bad because we're bloody ill enough already!) It wasn't the best start because my room hadn't been cleaned properly (there was a load of blood on the floor - EWWW) and I didn't get my overnight feed because my nurse said she couldn't find the stuff that's needed for it (even though my dietician got it all especially.) That nurse actually ended up getting in quite a bit of trouble over that and then she tried to blame me -_- and she also wasn't going to give me oxygen which was the whole reason I had to be there in the first place. Then she said she didn't even know that I had CF. Anyway here is the oxygen thing:

Look at dem bags!

I've never had to have oxygen before, it felt a bit weird at first but you soon get used to it. In the morning a cleaner disconnected me from my IV drip. This is bad because 1) they wasn't sterile, you have to be super clean when touching IV stuff or you could very easily get an infection 2) they're not medically trained so shouldn't be touching it and 3) it was just so random, like they had no reason at all to be touching it. I was confused. We had to put in a formal complaint thing about that.

But then in the afternoon I got moved to an ensuite room on my usual ward, it's called Mulberry how apt is that? ;) You know they wouldn't let me walk to the lift and that, they made me stay in the bed while they wheeled me about and at first I felt awkward and lazy but then I felt like Cleopatra or something paha. It's much better on the Mulberry ward, the nurses are all familiar with CF so they're good at IVs and overnight feed and things like that. The first few days I felt really rough and still breathless but at least I got to stay in my favourite outfit:

A bichon frise top, 101 Dalmatians bottoms and slippers that look like Freddydog 

Because my sinuses are complete idiots I wasn't really breathing in the oxygen properly through my nose so now I spend all night and most of the day, bar a few hours, with this thing on my face.

Elephant Girl

Well attractive (!) It's really noisy, it sounds like a kettle whistling. But it seems to be doing the trick, today my oxygen levels are finally looking a little better, they're about 90% so while they should be more all week they'd been sitting at 86-87% which is pretty terrible. They're being very slow at improving, at first I was worried they wouldn't go back at all but my doctors are optimistic they will. I was a bit worried I'd get too dependent on oxygen seeing as I've been on it all the time but I'm on 28% which is really low (everybody breathes in about 21% oxygen normally if that makes any sense!) and as I'm moving about and things my lungs won't get too reliant on it to function. 

By the weekend I was feeling better, although still breathless, so as I live so close to the hospital I've been able to go home in the evenings for a little bit to have some proper dinner (hospital food sucks) have a proper bath, a proper nap and of course see little man! He hasn't been eating since I left, he gets a bit funny if me or my parents go away for a bit poor dawg. He doesn't understand that I'll be back soon enough!

In desperate need of a bath!

I think if I couldn't go home for a bit I'd go insane, all day long it's constant IVs, physio, nebulisers, blood tests and observations which is extremely boring and tiring. On Friday the doctors said they would see about getting me home for good on Monday but I'm not sure they will let me go, I think they'll want to keep me in until my oxygen levels are completely normal again but I don't think it'll be too long before they are. Today was an improvement, I went out for a bit of a walk to Nandos and I managed to go down 80 steps and then back up again (that's 5 floors!) without getting too out of breath. I'm over 55kg which is madness, I've never weighed that much before so that's good! I also think the beautiful weather is helping, today was so lovely. And I haven't had any panic attacks or anything (apart from a little weep this morning alone in my room feeling sorry for myself because it was sunny and I wanted to go out because I was feeling a bit trapped haha) so this time my hospital stay hasn't been as bad. Last time it was because the nurses were mainly agency ones who didn't know CF and weren't at all sterile with IVs but this time they all know what they're doing which puts me at ease. There's this stupid rule now that you're not allowed to do your own IVs (even though me and my Mum have been doing them for years -_-) but because these nurses are good I can relax a little more. I'm very particular (read: petty and annoying) when it comes to my medicines and treatment and things, I have my way of doing them and feel a bit uneasy when people try and take over but this time it hasn't been too much of a problem...although I can't wait to be in charge of my own treatment again!

Well I hope that wasn't too long and boring, I think it probably was but that's exactly how hospital stays are...long and boring! Hopefully next time we speak I'll be out and outfit posting, hope you had a lovely weekend in the sun!

Josie x

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