Clinic today and it turns out we're heading back into hospital for a stay. I say back in, but to be fair, we have had a good stint out, so shouldn't complain. We have sent in a few more sputum samples than usual lately, as his cough has been worse (the highlight of our lovely CF nurses day must be opening the post to a juicy pot of mucous for the lab). The results show that despite two long courses of extra antibiotics (Cipro), his Pseudo infection is rampant, and has been joined by another bug for good measure. The decision was made before we'd even been reviewed; Two week course of IV antibiotics with a whole heap of physio thrown in for good measure.
It's not unusual for people with CF to go in for IV antibiotics as a kind of 'tune up' to dampen down the infections in their lungs, regardless of how symptomatic they are. Isaac, on the otherhand, has managed up to now on adhoc courses (usually twice a year, ish) when he is less well, his lung function drops, or the lab results show rampant infection, but it feels like we might be heading towards a more regular tune up, typically every three months.
The extra stress right now is that I am due to fly to Mexico City in two days time for work. We have agreed to wait until I return to go in. Our consultant has reassured me that this is in no way putting Isaac at risk. His lung function is stable, and he can have more Cipro for now, which we know holds the infection at bay. The problem is that it runs rampage in his lungs every time the Cipro ends - which we hope the IVs will put an end to. For now at least.
To add to this, his surgery on his nose has been delayed - despite asking to go on a cancellation list (we live so locally to the hospital and can run him in anytime) they failed to actually do this, and it turns out the waiting list is 5-6 months, and he is at the bottom. He has polyps and massive inflammation, meaning he can hardly breathe through his nose at all, and is most likely infected there too, which in turn may be reinfecting his lungs. Despite this, he was given no priority on the list. Thankfully today, our consultant will write to explain why this is urgent, and we are to write ourselves and complain, which will allow this issue get to the powers that be, and she is confident that we can get bumped up the list. I'm sorry, but... child...nose... lungs.... life threatening condition.... it's not hard to figure out.
I have yet to tell my little girls that not only will they miss me for a week for work, but then I'll be heading straight to the ward with Isaac. Another heartbreak.
And so I scream. And cry. And then feel a bit better....
Isaac on the otherhand is absolutely fine about going in; Looking forward to the laughing gas he will get to have his IV line inserted; the ward chef at his beck and call; fun in the gym; and extra time gaming as the drugs infuse. His only gripe is that it will be the last two weeks of his school holidays, rather than missing school. Gotta love that kid. How can I complain when he doesn't?
This Klee pretty much illustrates how I feel right now (especially as I was hit round the back of the head quite ferociously playing dodgeball at a trampoline park yesterday.... did not feel funny at the time, frickin kids!). Goodnight all x
