Isaac is never one exactly keen to go to school. His mornings are mired with nausea and pain way too often, not to mention always being on catch up work from the days he misses. But today was his school sponsored walk, and he wanted to get up early, eager to go. But his chest was audible with crackles before he even entered the room. Cough after cough after cough. Productive enough to get a juicy sample for the lab (dropped off first thing today. Results won't be ready before Monday earliest). Until then, we have to rely on his usual antibiotics, extra physio and Cipro (his most powerful back up anti-bot). Clinic had advised last week to delay Cipro as it is too soon after his IVs, but he is now too poorly to put it off. We will give this a few days, and if no better, take him in. He is feeling so bad, he actually asked to go to hospital (which never happens). But he made it through all 16 miles of the walk. How amazing is that? Battling through with crappy, angry lungs, coughing all the way, he still won his own personal battle.
CF is all consuming. It affects him in countless, immeasurable ways. Laying awake at night, listening to my boy go through this, is utterly heartbreaking. I can't describe it. I wrap my hands round his chest for physio (we do chest percussion when he is coughing this much, on top of his physio he does with his Aerobika device, as he gets so tired) and I don't just hear his rattle, his wheeze, his crackles, I feel them.
At times like this, CF is all I can think about. I like to think I do all the worrying so he doesn't have to, but as he gets older, I'm not sure that's always true.
