Day one: Today started with the usual will they or won't they question over availability of a hospital bed. When you have your bags packed and mind set on going in, it's understandable but frustrating when they don't have room. Today we are lucky, and have a bed by lunchtime.
Arrive to find that it is the WORST BED EVER. The middle bed of a 6 bed ward. This means we are surrounded by curtains. Even a window view of the opposite wall would be better. The main problem is we have only a bed, a fold down bed for me, and one small cabinet for our stuff. This is impossible with the amount of medical equipment we have with us. While we are in, I still need to do his usual treatments, which include five nebulisers a day, which means bringing two different machines and all the paraphanalia these involve. We're told we will be moved as soon as something bigger is available, but it's still likely to be on a mixed ward rather than a side room.
Worse still, there is another kid with CF on the ward, and he's an older child too. This means we can't go in the teenagers room, due to cross infection risks between people with CF. The kind of opportunistic little bugs which love the CF lung are not the kind that usually affect other healthy people. But between CFers, these bugs would spread rapidly given half the chance. The teenagers room was our life line last time we were in. He's too old for the kids playroom, so this leaves us only the garden. This only increases our feeling of claustrophobia..... and it's only day one.
After a few hours, the doctor makes it up from clinic and we have his long line inserted. This is simply a cannula with a longer tube which threads up his vein from his elbow towards his shoulder, to administer his antibiotics directly into his blood (intravenous). Thankfully this time it goes in first time. It still takes about 25 minutes and he uses entinox (laughing gas) throughout. Once he is all stuck down and bandaged up, I guide the drunken teen back to his bed.
An hour or so after this, he has his first IVs, and we spend another hour or so doing his usual stuff.
Move beds, to the corner of the same room. At least we have room now to do his drugs properly. We have a couple of toddlers and a baby in the room, and a young girl whose Mum has gone home. It will be a long night for us all. I miss my girls, Dan, Obie and my bed.
I fall sleep about 10pm, still jet lagged, and mildly annoyed that he hasn't opened his Toblerone so I can't possibly steal a chunk undetected.
Wake up at midnight to find that he's still on his laptop. Oops.
Nurse comes at 3am to do his second lot of IVs but we both sleep through it. Pretty good start all in all.
