The boy was cranky in the morning, in the way that he does when he's not well. The wife had arranged for the hospice to look after the boy for 3 hours, so we could have some time together.
Nice idea but didn't quite work out. Spent the first hour looking after the boy, trying to work out if we should take him to the hospital and discussing him with the consultant. The hospice did shoo me and the wife out briefly for a coffee - a strange experience to be outside with her without the boy and him not underoing an operation. But when we go back we agreed with the hospital that he should go in for a check up and IV antibiotic.
While we waited for his appointment, we did his trachy change, as the monthly change was due. He was very upset. "No tapes, no tapes". He was kicking and screaming so much so I had to hold him down pretty forcefully. Not a pleasant experience, though he hardly noticed the trachy itself being changed. The wife's hands were shaking very badly afterwards.
I took the boy to the hospital on the train. He was crying all the way there in the buggy. "No train, no train". "No doctor, no doctor". Got him into a cubicle at the hospital and had the inevitable wait for a doctor. I sat him on my lap to watch diggers on the building site opposite and after 10 minutes or so he forgot he didn't want to be there. This was reinforced when he remembered that if he got into bed he could watch kids TV. By the time the doctor had been and he'd had his IV antibiotic, the boy was rather enjoying himself and it was "no home, no home". I let him have his way as it was rush hour. But eventually, there were programmes he doesn't like and he agreed to leave.
After we got home, we got a call from the hospital to say that he does have an infection but they don't yet know whether the antibiotic he is on is the right one. We will find out later. In the meantime, we have to go back to the hospital in the morning and evening on Saturday for further IVs and then once a day thereafter.
And, of course, after his bath he insisted we change his trachy tapes, despite me telling him they didn't need to be done. Routine is routine for the boy. Try to vary it at your peril.
So much for my day off without going to hospital.
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