Bronchoscopy, IVs and subsequent results

The Bronchoscopy went as well as we could have hoped. It was a long day of nil by mouth (always a frustration point for my ever hungry boy) with delays in going to theatre. But having been bumped off the list by emergencies many, many times before, we were very glad to only be delayed, not cancelled (please never under estimate the huge, debilitating pressure on our beloved NHS). General anaesthetic was fine, he tolerated it really well this time with no big de-saturation’s (his oxygen levels did not dip badly while he was ventilated). I was on my own this time, so spent a nervous hour pacing the corridors (never gets easier) remembering that last look of him, confused, glassy eyed and unreal before the anaesthetic took hold and he fell ‘asleep’ (under GA looks nothing like sleeping by the way, it is very hard for a parent to see). Recovery was OK; usual sore throat, grumpy, disorientated. All IV access was through his port this time, which was great, meaning he didn’t need a cannula as well. He slept and coughed a lot all the rest of the day as his body recovered. 

We kicked off IVs on the ward, but we’re now happily at home. I administer the IV drugs, and the lovely community nurses come every 2-3 days to do bloods (they need to check the levels of one of his antibiotics in his blood stream regularly to check that it’s not too high. Too high could be very hard for his kidneys/liver to process, causing potential and irreversible damage). All good so far. 

That said, Isaac has been sick almost every day since starting IVs, and experiencing chronic nausea despite lots of anti-sickness drugs. Right now, the doctors think this is an unfortunate concurrent viral thing. I’m not so sure, it’s so very hard to know in CF what causes what; it could be his current exacerbation, viral infection, drug side effects, or CF tummy related - and his tummy wasn’t right pre-IVs either. 

Today he managed his first whole day at school in a week or so, so hopefully this is coming to an end. 

While all this is going on, my anxieties build as I know the lab have taken the mucous they washed out of his lungs during the bronch (called a lavage) and are waiting to see what bugs grow on their agar plates to see what is going on in his lungs. Early results (some take days, some weeks) reveal more fungal infection. This is mega frustrating news as he only very recently had treatment for this (early in May). To have it back, again, so soon may mean he will need longer term treatment to attempt to kick this out for good. We meet with his team next week, but I’m aware treatments may include 1) long term anti fungals and 2) steroids - both of which have pretty terrible side effects in his case. And this would be alongside his usual treatment for his chronic bacterial infection (PseudomonasA). Right now, I’m trying not to worry (trying, ha! But not always succeeding). 

The positives: We’re on acute treatment already; We know now what we’re battling (which is much better than not knowing, not treating, and him continuing to lose lung function); This is exactly why the bronch was a good idea - making it all worthwhile. 

We don’t know enough yet about what this reoccurrence means and what his options are. So until next week, we carry on with IVs, we do the new treatments, and we very much hope for improvement. Plus, whilst his tummy has been horrible, his chest is sounding a little better these last couple of days. 

Have a great day x x x 

PS; Fundraising update: We are just £345 away from our £5000 target. Thank you so much! If you’d still like to support us, there is a link on the picture of Isaac to the right (unless you’re viewing on a mobile). Some of my hero team are still wearing medical boots while they recover! x 

Robert Mapplethorpe ❤️