Isaac is sadly no better. In fact today was pretty horrible; endless, violent coughing.
He manages the odd day at school, but other days, the sinus headaches, the nausea, the vomiting, the coughing, and exhaustion from all of these, and bought about by both bacterial and fungal chest infections and the toxic treatments needed to fight these, all making his mornings pretty impossible.
It is very hard to hear, to watch, to feel so helpless in the face of it, let alone to endure yourself, day in, day out.
We do have new treatment options, and a fabulous team only a phone call away. We have back up antibiotics in stock at all times. This is so when he becomes more symptomatic we can quickly add in this third antibiotic (he already nebulises Colomycin and Tobramycin daily, and takes oral Azithromycin, which helps reduce the inflammation in his tired and angry lungs as part of his daily and ongoing treatment plan). We will now keep in stock a back up anti fungal, so we can jump on exacerbations quickly for both bacterial and fungal infections - since this aspergillus seems set to stay put. Bastard.
For now, he is completing his back up antibiotic (Cipro) and a months course of the anti fungals (Posaconozole), and we’re monitoring his lung function and symptoms closely (lung function is down 10% further right now). After that, options include nebulised and IV anti fungals. The biggest downside being IV anti fungals are highly toxic, so must be done via infusion in hospital. If this becomes a standard treatment option, and he requires these IVs as often as he does IV antibiotics right now, we could be looking at four or more two-three week stays in hospital a year. That is pretty life changing, since we’ve managed the majority of his courses of IVs at home for years now, giving him a better quality of life. However wonderful the care is, long periods of time in hospital is no quality of life for anyone, not least for a child (the child is actually bigger than me now).
We’re hoping the three remaining weeks on the anti fungals will help and he might get a break before his next IVs, but with his sinuses and pending surgery (and considering how bad he is today) that might be unlikely. His CF team are adding pressure on ENT to see if we can get him bumped up the waiting list. Should the pandemic mean they stop planned surgery again, this would be terrible, leaving him in this cycle of pain and infection. As always, Isaac’s standard response to people asking him how he is? ‘Not the best’. However bad he feels. How he copes I don’t know.
My knee jerk reaction is to start planning my next fundraising (watch this space). Thank you in advance for your wonderful support.
Hope I can deliver better news on my lovely boy soon x
Little festival Ise.
