Nothing out of the blue.
While we are pretty sure we had COVID at the very beginning of the pandemic (all of us but Isaac, amazingly) we’ve been fortunate since, but last week Anouk tested positive. Being the amazing human being that she is, she stuck to her room without complaint, and we cleaned after she used the bathroom. With her phone, Netflix and chucking her the odd snack, she was happy. Last two days she has tested negative and is now back at school. The rest of us have tested negative all week, but today there were a few confirmed cases in Rosa’s class alone, so still bracing ourselves. It’s just everywhere.
Separate to the COVID malarkey, Isaac’s lung function has fallen significantly after a change in his cough this last week or so (we don’t think this is anything new, just a typical exacerbation of his CF lung infections, and not responding to Cipro); today in clinic they decided to admit him onto the ward to commence IV antibiotics. This is also off the back of his lung CT results, which were.... not fab.
Not unusual. What is new, is that this will be his first in adult care, the differences being; we cannot stay the night with him (and we have never left him before); he will have his own room on a specialist CF ward (rather than being on a general paediatric ward); at his new hospital it is standard to start IVs with a stay in hospital (whereas we are used to doing the first dose in outpatients, and doing the rest at home); I need to retrain to do his IVs before they can sign off on me doing them at home (after 15 odd years of doing them); that we need to stick to actual visiting hours (in paediatrics there is no rule for parents); and, because of COVID, only one person can visit throughout the whole stay (which will have to be me, as I’ll be retraining for home IVs) and this is limited to just one hour per day.
I’m taking that last bit with a lump of frickin salt the size of my arm - not only will I need longer than that to demonstrate that I know what I’m doing IV wise, but this is his first visit, to a new ward, new hospital, with a new team.... and he is just sixteen. I’m lucky that he is a mature sixteen, but still, that is my boy.
We were also told by his ENT surgeon today that his next sinus surgery will be a major one. This confuddles me muchly, as he’s already had the ‘major’ sinus surgery (effectively converting his airways in there from a traditional house to an open plan one) - I wasn’t aware there was anything more major that they could do! Sigh. So now we await another CT (surgeon was hoping this could be done while he is an inpatient, but the possibility of two separate areas of two separate hospitals (all be them on the same Cambridge site) being able to coordinate this at such short notice seems unlikely to me, but let’s see) and then a date for surgery. This will be his fifth round of sinus surgery alone, in what? Three, four years?
Isaac is taking it all in his stride and doesn’t seem fussed at all.
I wish I could be more Isaac.
In fact, I think we could all do with being a bit more Isaac ♥️
Gerhard Richter love:
