Clinic today was, as Isaac would put it... ‘not the best’.
We don’t know the team at his new adult care hospital well, so we are getting used to them, and them us. New doctor today, who really took the time to talk to us and discuss options.
Isaac is not doing his physio or treatments as he should, and I’m out of my mind with worry. He is honest with us and his CF team about it now, at least, but his excuse is that he forgets. I disagree as we set out all his treatments each morning, and we remind, beg, tell him numerous times a day. We talk to him, we explain the risks, he makes promises, and does well for a few days, and then.... repeat.
One problem in CF is that he feels no immediate improvement when doing his treatments. As an asthmatic myself, I know if I forget to take my inhalers twice daily, I’ll be wheezing pretty quickly. Taking my inhaler though, I feel this immediate and lovely relief in my lungs. For Isaac on the other hand, airway clearance and nebulisers make him immediately feel worse (at times, endless coughing ensues).
But he is smart, he gets it. He understands the need, but still, he is lazy with it, and for me, that is heartbreaking. I remind him that we endured literally thousands of hours of holding a mask to his face when he was a babe/toddler (he first grew the nasty PseudoA around 18 months old) watching Thomas the Tank Engine on maximum volume and on repeat to get these treatments done. Now technology means nebs are so much quicker, silent, portable.... how can it feel harder now than it was then?
Talking through this with the doctor (kind but insistent), looking at his lung function tests from today (rubbish), and his recent CT scan (worrying) - we’re looking at another admission to hospital for IV antibiotics and some serious physio. This is in addition to impending sinus surgery, for which we still don’t have a date.
Right now, he is refusing to go in, but he’s said this before. We have another week on extra oral antibiotics, and a chance for him to crack on with some proper physio at home while we wait for a bed, in case he can increase his lung function without IVs, but it’s not looking likely. The CT shows too much mucous plugging.
Home IVs are an option, but the Dr and I agreed, unless this is combined with him committing to decent airway clearance at home too, it won’t work. And right now, I can’t trust him to do this - and that is very hard for me to say. We have always fought for home IVs, although they exhaust me, as these give him a quality of life that hospital does not and we get to keep him close - but right now, maybe hospital is what he needs. This feels like tough love in its rawest form, and that’s not something I cope well with.
The consultant repeatedly told him that he is just seventeen, and the irrefutable evidence on the CT shows signs that this repeated cycle of infection and inflammation, along with the regularity of his exacerbations and his occasional non-compliance with treatments is resulting in irreversible damage, and that is significantly concerning at his young age.
This is not a sudden decline. Rather a gradual one which is harder for him to recognise and easier for him to deny; if not for the test results. As the doctor put it - this is time for intervention, but a two week hospital stay is still a hard sell, however much we try.
Things feel tough right now. I must say it’s not hugely helped when we are asked by every new CF team member ‘so, is Isaac on Kaftrio?’ and having to explain again and again that he is in that last 10%. To support our fundraising for the CF Trust, who are very focussed on not forgetting that last 10%, please visit my fundraising page here x
Anouk and random tree ❤️
