Just a week or two post IVs and Isaac is coughing much more. This is not supposed to happen.
It’s hard to describe, but much of what I know about how he is feeling comes from 14+ years of listening to his breathing, holding his chest, feeling the rattle, hearing that crackle, asking him to huff and hearing the resistance. He can, and occasionally will, also tell me with words, but I still have to do a lot of filling in between the lines, as he would much rather gloss over whatever he can, to put off extra treatment. That only works so long, and my job is to ensure it’s not too long, and he’s too ill. Tonight he actually asked for percussion physio, which is telling of how he feels.
The timing is not good, and we’ve been here many times before before, doing endless calculations; If we try orals first, and they don’t work, we risk being on IV antibiotics over Christmas. Jump to IVs now, and he won’t be happy, having only just come off them, and there is still a chance this is viral and he could physio the arse out of the mucous and gets through this. But leave anything too long, and he risks getting ill and needing to go into hospital just before Christmas...
The below graph illustrates what we can expect for lung function over time with progressive CF disease.
Breathing we know to be a pretty handy thing to be able to do, and CF disease is not massively conducive towards this;
Below is how we might expect maintenance IV antibiotic treatment to help reduce this decline; he dips, we start IVs, he gets worse before he improves, and then we see have a good spell of wellness until we repeat again, and again, and again...
Only this is what it actually feels like;
The added stress at this time of year is always that we have a BIG FAT LUSCIOUS HOLIDAY that we desperately want to be home and well for, both for Isaac and his little sisters.
Our lovely Anouk has asked to start a blog about girls and football, please support her idea by clicking here! She would love some followers. My budding blogger ❤️
