Some of the results are immediate, some take longer, and considering his cough right now, things didn't look too bad. But on the otherhand he has been symptomatic since Christmas, with only the odd day off (quickly ruined by a pesky virus). His cough is wet, fruity and productive. The worst kind.
Before CF I imagined medicine to be a more precise science; Diagnosis, prognosis, treatment. But I've learnt that there is a whole frickin array of Farrow and Ball greys inbetween... His lead consultant (who we love) took the time to debate the various options open to us, even bearing in mind that he has a birthday treat in two weeks time that he would hate to miss. Knowing that a course of IVs is usually two weeks long, but anything from 10 days would be acceptable, we opted for a weekend at home on high dose steroids to see if this could be an inflammation reaction rather than rampant infection (we already know he has pseudomonas lung infection, but how rampant that is right now? Still up for debate). We also agreed that as he's had a bad run of things, and has missed a lot of school already, an IV course could be done at home (For that, we love her even more!).
Home IVs typically means; admitted to ward, cannula, first dose, long line, second dose, check for reactions to the drugs, I revise my nursing skills, then home in a couple of days to complete the course. Excellent. We do need to go back in every 2-3 days for blood tests, and immediately if we have any problems with his line, but we're incredibly lucky to live 20 minutes away. We used to do this more often when he was younger, but they changed the policy a couple of years ago, and now seem to keep us on the ward longer, at least until lung function is increasing, but we feel we can do more at home (physio/fitness wise) and reduce the risk of picking up more bugs by staying home. Plus its better for the whole family.
Anyway, here we are, with our hyper, raging, ravenous boy..... Did I mention before the side effects of high dose steroids? I can vouch for the majority of this list....
So this weekend, we headed to my Dad's caravan in Norfolk for fish and chips with wooden forks, sea air, walks, rest, and family time. It's been as lovely as it can be with the crazy beast that steroids presents (constant mantra being 'it's not his fault, it's the drugs, it's not his fault, it's the drugs....) and as agreed we'll make a call in the next couple of days if his cough is improving (superb) or not (IVs). These steroids are short term; he has previously had months of steroid treatment, and the side effects are always the same, so feeling that we're kind of getting off lightly at least.
On the way home today, Rosa asked me, 'when you're a Grandma Mum, can Isaac be my Daddy?' Sibling love ❤️ X
