Isaac is not quite well (but had a good Christmas). It is both frustrating and deeply saddening at times; He has been back at school three days, and had to come home early for two of those. Clinic soon, if he can wait that long, if no better this week I'll take him in early. We have something called 'open access' at the hospital. Which essentially means we can call anytime and talk directly to the on-call registrar. This also helps us bypass A&E sometimes and go directly to the ward, but during normal hours it means we can go directly to the CF team in clinic (outpatients). The problem is knowing when to go. The relentless conversation in my head usually goes something like this....
He is in more pain than usual, it could be another bout of DIOS, I should take him in....Or, he may not have taken his Creon in school, and he might just be malabsorbing? Better stay home, wait and see.He has headaches and nausea that his anti sickness drugs aren't helping, I should take him in....Mind you, there's lots going round, we've all been ill, it's probably viral, better not take more germs into hospital.He's still not right, needing painkillers everyday is not right. Are these side effects from one of his many medications? Has he had enough salt today? I'd better take him in.....Ahhh, the hospital has winter vomiting virus, better stay away. Don't want to catch that!His chest doesn't sound good, is that a wheeze? A crackle? A new chest infection, or an exacerbation of his existing live-in bugs? I should take him in....Actually, sending in a sputum sample to the lab would be better, then we'll know what we're tackling. Extra physio at home while we wait for the lab results, that'll do the trick!No, he's really getting no better, I'm taking him in.... but he has a (insert fun kid thing) today, he would be gutted to miss it, can we put it off one more day...?
I don't think I am alone (in the CF world) in feeling like this. It can often feel like you're damned if you do, damned if you don't, and judging exactly when the right time is to start extra antibiotics, or take them in to clinic (or worse, A&E) is a mindbend. At the stage we are at, there are only rare occasions where CF can require emergency treatment, but inaction could cause long term damage. On the other hand, I've been that Mum that rushes in on many an occasion too, and been sent home after no more than a cuddle and a sympathetic look. And that is no fun for him, nor is it reassuring that this life is any way 'normal'.
While I juggle my own work/life balance, I'm finding at this age with CF, for Isaac, it's the health/life balance. He doesn't want to spend ages every day doing treatments, but he doesn't want to be unwell either. He doesn't want to be 'different', but he is. Right now it feels like a constant struggle to keep the many factors of his life balanced, as so many of them are important, and there are only so many hours in the day;
1) CF treatments (to stay well),2) sports (to keep fit, and see 1.)3) the things that make him happy (I'd love to say spending time with family, but PS4 might be slightly higher up his list!)4) feeling normal (very important to him psychologically)5) education.
Due to the amount of school he has missed, number 5 seems to be taking a hit right now, which is unsurprising and not his fault at all, but the extra work he needs to do to catch up hits numbers 2, 3 and 4. And it's vexatious to think that even if he puts in the extra work to catch up, his next admission to hospital might set him back all over again.
So in my fuddeled up way, I think what I'm saying is, we're all feeling a bit unbalanced, and 'CF sucks' features highly in our home vocabulary right now.
In other news, Dan and I are enduring 'dry January'. Dull. I've started my new job, and nothing has gone terribly wrong so far. Little Rosa becomes evermore fiery, feisty and funny by the day and Anouk said to me the other day (after a chaotic morning school run where they each couldn't find something before we left) 'Jeez Mum, there is no way I am having three kids.... it's AWFUL!'. Only sometimes sweetcheeks.
Happy New Year x
