Antibiotics, bronchoscopies and CT scans.

Thursday we popped into CF clinic for an emergency review, as his cough is building. We saw the registrar as many of the team are away at the European CF Conference, but he was great, really took the time to listen and understand where we are right now. The relationship we have built with our MDT (multi disciplinary team), which is made up of CF/Respiratory doctors, CF specialist nurses, physios, dieticians, pharmacists and psychologists, is an essential part of Isaac’s healthcare, and it’s both important and valuable for Isaac and I to feel part of the decision making, not simply passive participants in his care. Anyway, his lung function was (as predicted) down, and he had more bloods to check his infection markers (TBC). 

We discussed that for six months now his LF has been creeping down steadily (as lung function is considered a vital measure of wellness in CF, this is major concern). The doctor suggested that as Isaac had been so poorly in Oct 17 (read more here) this may have contributed to his overall decline, but he also agreed with me that we don’t want to simply accept that this is his new baseline, without really understanding why this might be, and nor will we stop trying to regain lost LF. 

It’s also clear that he is exacerbating right now (despite recent IVs, anti-fungals, and steroids) and we need to deal with this now. Therefore, tentatively the plan is a week on Cipro (extra strong oral antibiotics, started last night), with a review in one week. If his LF has not improved by then, IV antibiotics will be kicked off in hospital, with the idea of doing a bronchoscopy (a looksee in the lungs with a camera, plus a flush out of his mucous to test in the lab) at the beginning of the course, and potentially another CT scan following the course (to have a more detailed look at his entire lungs; beyond the point they can bronch, essentially). It’s a tentative plan for now, his MDT will discuss at their meeting next week. It’s incredibly important to know we’re not missing anything, and bloods, xrays, medical reviews and culturing sputum samples can only give us a partial picture; a bronch and CT will ensure nothing is escaping us that might explain why he’s declining. 

Not great news by any means, but a reassuring plan of action, and in true Isaac style, he took it all in his stride. There is good news scattered in each clinic visit too... his weight and growth are great (something many people with CF struggle with), his exercise tolerance is amazing (he does CrossFit and is in a football team) and his gastro problems are much, much less frequent and severe than they were a few years ago (a cycle of DIOS and problems with nausea that for a while I thought we would never get out of). Lots to be thankful for, heaps to hope for. 

Have a great day - and please think of us, walking for some 13,14 hours tomorrow!

Picasso ❤️