We’ve come to the end of two weeks of Cipro, and he is no better. He came home sick from school yesterday, O2 saturations around 94 (anything below 93/94 and he really should be on some oxygen). He coughed and slept his way through the night, and this morning I was ready to pack our bags to go. He coughed so much he filled three cereal bowls with sputum and coughing so hard he threw up.
Since then his sats have drifted between 90 and 98. As it’s the weekend, our only option is to go through A&E. Although he has this ‘open access’ to hospital, it’s kind of meaningless as he still needs to be reviewed by a doctor to be admitted.
What haunts me is that we had a similar weekend last October when he became much more symptomatic on a Friday, we thought about A&E on the Saturday, he seemed slightly better Sunday, so we eek’d it out until Monday morning to see his own Dr and go straight from clinic to the ward. Whether things might have been different had we taken him in sooner, I don’t know, but by the Thursday he was in intensive care.
So why are we sat here at home still?
Isaac is adamant that he doesn’t want to go to A&E, and he increasingly wants to have a say in his care. I half convinced him earlier, and then his sats said 98 and he told me ‘see. I’m fine!’ between coughs. Last time we were there, we sat for hours, with the contagious (so not good) the drunks, and arguably worse? The people with a stubbed toe or a sore throat (thank fuck for triage). Plus, he argues that everyone at school is sick with the same thing, so it must be viral. True, but his friends don’t also have CF, they don’t have extra sticky mucous they can’t clear, and they won’t have an army of Pseudomonas bacteria already living in their lungs, getting ready for the party a virus lays out for them in his weakened lungs.
I called clinic Thursday and they said they would get back to me. I knew the Cipro would run out tomorrow morning (Sunday) and it already looked like a bad idea to stop the one thing that might just help a bit until he gets on IV antibiotics, so at the very least, I wanted a prescription for more. But despite calling again and leaving messages three times, I heard nothing back Friday either. This is not like our team, and is most likely a sign the wards are full anyway.
What we need is 24 hour wraparound care with the team that knows him. What we have is a weekend with limited access to consultants, a hugely overburdened A&E system, full of strangers to him and his health. We’ve been admitted before at weekends only for them to put off treatment until he could see his own team on the Monday anyway, as CF is complex, and registrars are reluctant to make decisions.
He is asleep right now (4pm, and this is the kid who never naps). I’m sat here listening to his every breath/cough, ready to argue that we have to go in when he wakes up. This hurts. I can’t tell you how much I hate CF.
