However, good chat with the doctors today, and we have a plan. Stop IVs (he is now de-accessed and showered!). Start four weeks of antifungals and steroids.
Antifungals as we’ve tried targeting the bacteria, and that hasn’t improved how he feels, so this is our next best bet (we know he has aspergillus and pseudomonas in his lungs, but initial tests had suggested the pseudo was causing this exacerbation, and the aspergillus blood markers were not as high as they have been recently). Steroids to help turn off his own inflammatory response.
This is turning out to be a seven week treatment plan, on top of everything he usually does, and the side effects of these drugs are not the best. But he is needle free (we’re trying oral antifungals rather than IV in hospital) and feeling free! He starts college in just a few weeks, and we so want him well for that. Two days until his exam results too (eek!).
It’s good to have a plan, and for now, I am focussing on that. Sorry, recent posts have been a bit morose. This one has been hard. You are only ever as happy as your least happy child, as they say, and that’s the same for wellness.
Keep well, and thank you for reading. Please do share if you would like to help raise awareness of cystic fibrosis x
Rosa bean after her first ever horse show. She has found her passion in life! ❤️
