The whole light etiquette: come evening, we try always retire early; knowing our night will be interrupted in a hundred different ways, we have to go for quantity rather than quality. But when is it polite to turn off the main lights when you’re sharing? I’m all for bed at 8pm on the ward me (so frickin rock’n’roll!). We once slept next to a family who every night angled their bed lamp so it was actually touching our curtain, facing our direction, giving them a lovely dimmed light, and us, the full beam. I silently wept and tried to knock it away, as if by accident, with an outstretched yawn.
Space: The children’s ward we frequent is split into a few individual rooms (which we only get if he is contagious, or if there are a number of CF kids on the ward all of whom need to be kept apart), and other rooms with three, four or six beds. The more beds, the less comfortable you will be. Fact. On the six bed ward, I once had a parent push their chair so far up against the curtain dividing us, his chair was touching my back as I laid on my side. We were next to each other for two whole weeks.
Crying: The worst was the sweet baby that came in for cleft palate surgery, who cried all night; a shrill, gargling, piercing, and hungry cry. I honestly think Isaac had about an hours sleep. I assumed the babe was nil by mouth pre-op, and having been there myself, it wasn’t hard to empathise with the poor mother. But when the dad came in the morning after, I heard him ask the mum, ‘have you tried feeding her?’ And the mum replied ‘no, I thought she was just tired’. I’m telling you.... ALL BLOODY NIGHT, and she stopped as soon as she was fed - I think it’s sometimes possible people see the illness first, and the baby second. If that makes sense.
Night arrivals: There are the families that come up in the middle of the night from A&E, who have probably have had some kind of BIG LIFE EVENT of sorts, and it is a known fact that people talk around 22% louder during such episodes than they normally do. Kids often come in with parents, sometimes with siblings and grandparents, maybe aunts and uncles too. And all of these worried and loud people are right next to us as we try and sleep. You understand, but sometimes it doesn’t make it much easier when you’re tired.
Privacy: This week, we had the 14 year old who was on her phone all the time and tried to have her 18 year old boyfriend stay over (the nurses kicked him out). I felt like I knew her by the time she left without hardly talking to her, we’d accidentally overheard stories of snapchat screenshots going viral round school, her social worker, going back into care, her mother calling social services on her father, her sister being in the pub all day, her warning friends to back up her story to the police (really).... how can you not listen when you’re close enough to hear each other roll over in bed? As she kept rolling back in on her wheelchair smelling of fags, I desperately wanted her to go, but I also wanted to give her a big hug. Equally everyone knows exactly what is going on with us, be it an intentional or accidental invasion of privacy, I get it, but sometimes that is hard to deal with (even for me, who writes a blog about this life. Kind of ironic I suppose).
Environment: Then there is the inevitable snoring; the heat (wards are always so hot); the hospital hum (the noise which I imagine comes from his generators, boilers, air conditioning units? I hope it’s not the incinerator, I don’t like to think about those); the wondrous smells of all varieties; and of course, the forever, incessant beeping of machines.
Anyway, I could go on and on, but feel bad for moaning. There are positives... occasionally at least. You can meet amazingly interesting families, and make friends even. We are definitely in the regulars club now; We know all the nurses, and the nurses know what Isaac needs: space, more than most, only because we have to bring in so much medical equipment with us (two nebulisers, bi-pap machine, all of our usual drugs) so where possible, they do try and get us a good bed. And while the majority of people we meet here we only ever see that one time, there are others regulars like us. Sadly I can’t meet up with a good friend of mine, whose daughter also has CF. We are often in at the same time, and text each other from our respective beds, but cross infection is even possible from *patient to person to person to patient* (if that makes sense!). So we support each other from afar and wave if we see each other (good luck for today A&G! Much love to you both).
Today has been a little difficult for Isaac. His port op has been delayed again, and should happen next week now, unless his longline fails sooner (in which case he should get on an emergency list). He had quite a sleepless night worrying about the op, I think mostly because he had two very recent general anaesthetics, and for both, his experience in recovery was rough (initially that is), so he is understandably frustrated for it to be delayed a second time. Then he had his hopes up to go home for a few days, on home IVs, as his lung function today had increased nicely. However the doctors are not quite ready for him to come home, and will review him on a daily basis until they are. That said, things are otherwise going well.
I, on the otherhand, have come home for a good nights sleep and a cuddle with the girly ones while Dan stays with Isaac. It’s always bittersweet for me though, I feel like I am missing a limb when I’m not there with him (despite the fact that he hit me round the back of the head with a football earlier in the gym. Little shit). Love him x
The long escape route from hospital....
