Me sowee for no bloggy. I've been busy wading through treacle.

Heya,

As you might have guessed, my severe lack of postage has been due to parking my butt back in LCH. In a record time of 22 hours after discharge. Lemme fill you in... (room goes hazy)...
So I leave LCH on the Friday at about 8pm, Daddio picked me up and we sped off in to the depths of homeland sussex, relaxing with a cup of tea by 10.30, then bounced upstairs to unpack ALL my things, neb and snuggle in to my lovely big bed. Slept on and off but mostly that was because I was excited to be home and yet also couldn't stop thinking about Louis and his family. I woke up quite abruptly at about 6am and thought "my god I'm warm in here"... thought it was the oxygen concentrator heating up the room/thick duvet ect, but for some reason I decided to check my temperature anyway even though I felt fine.
I was QUITE surprised when it read 39.9, and got mum to check it on herself to make sure it was working! Which it was... so here I am thinking WTF, how do I not feel awful with this fever? I guess the shivery part happened when I was half asleep so I didn't realise the crap feeling and had simply arrived at the burning hot stage without any warning. I took paracetamol to get it down and it went down to the mid 37s a few hours later, but I was still so confused as to why it would shoot up like that when temps hadn't been an issue during the admission when on IVs.
When it started heading back up again despite more paracetamol, and I also felt a teeny bit off, we had to give in and call the ward for advice, to check whether it could be the kenalog (steroid) injection that I had before I left LCH.
Doctor on call phoned back and pretty much had dobbed me in to my consultant, who demanded we go in straight away for blood cultures and an x-ray. I felt well enough to get the train up so we did, and there you have it, by 8pm Saturday night, I was back.
The next four daysish were a blur as I continued to spike 40 degree temps all the time and this time actually did feel awful. My xray on sunday morning confirmed that the pneumonia had sprung back overnight, this time worse in the right lung, and at first it was like no-one had a clue where to go. On sunday morning we stopped ALL my CF drugs in the remote chance that they could have been causing a reaction. And by late sunday we restarted IVs as they realised it was probably infection. Tazocin and Tobramycin again, and thankfully a long line was put in and lasted till today.
Due to the Tazocin being stopped for 48 hours then restarted, I developed a rash all over and now am allergic to it, so it's been switched to aztreonam, with the tobra.
The temperatures have reduced a bit but still spike up to 39 at times and as this was happening after a week of IVs, and my x-ray hadn't improved, they decided that I'd have a bronchoscopy with a biopsy today. It's the third one I've had and unfortunately despite sedation I had remembered everything and felt everything so knew what was coming. They promised that this time I'd have more sedation so I'd not remember/be aware of much at all, but for some reason I was given the highest standard dose, and was wide awake for it. It's effing horrible and I hope I never have one again. They had three snips at a biopsy and I was in so much pain I cried the whole time (I NEVER cry with pain) and then continued to sob all afternoon like an idiot. I couldn't help it to be honest, I felt so... let down by it all. No-ones fault but just.. not nice.

Even though apparently I'm a hardened benzodiazapene user and it did NOTHING for me during the procedure, it did help me to feel like a drunk all afternoon so basically if I wasn't sleeping I was crying in pain and vica versa. Eventually I was given something for the pain although I never got my 2pm IVs, and due to my beloved long line being raped by the midazolam, not flushed afterwards, and then not being clamped and filling up with blood, it's now irreversably blocked and when I asked why I'd not had my IVs at about 7pm, and they came round to give them (!), unusable. And so here we are, nearly 9pm, me waiting for doctor to come and put a venflon in... so familiar, and I've missed a dose of antibiotics. Retards.

Well, I didn't say it was gonna be pretty, and it wasn't. That's roughly everything that's gone on bar a few things, so I'll update tomorrow. No exercise today for obvious reasons.... xxx