So, the 'most fragile suction machine in the world' has finally given up the ghost entirely. The plastic rim has split off completely and consequently no suction at all. We have a smaller machine but it can't be used when it's recharging, so we've had to get an old one (that we saved from being thrown out) back into service. No response to our requests for mend/complaints yet, so they've been slightly escalated. All this takes time away from actual caring - that's why the nurses haven't been able to chase it up properly. So he's back with us and we have to find time to chase up problems like this as well.
In himself, he seems OK but he does seem to be having rather more fits than normal today, so we're trying to identify a cause. Discomfort/pain often sets him off with asthma or fits - partly a stressed reaction, partly communication. Current favourite is tight chest due to hay fever reaction and increased salivation going down the wrong way, but it's more speculation than science. Managing a condition like his is very much a 'seat of the pants' operation. Oddly, panadol often stops him fitting - by reducing the pain/discomfort that is causing the fits in the first place. It worked today.
There is no rule book. (There are lots of protocols, but that's another story.) He hasn't even got a formal diagnosis - just a cluster of symptoms. It could be Otahara syndrome (what Cameron's child had) but he's a lot older so we haven't had the tests (not available when he was a child). It wouldn't change his treatment anyway, so no point in doing it now. It came as something of a surprise when we were told (when he was a child) that a third of neurological conditions had no formal diagnosis. I'm still taken aback sometimes by how poor medical knowledge really is. I find the confidence of doctors is often a smokescreen covering a real lack of knowledge and their apparent certainty is often based on not much more than opinion or a current 'flavour of the month' treatment. Some medics really believe they know what's going on, some admit there are limits to what they understand but quite a lot know they don't understand but feel they have to put on a confident front. I tend to have most trust in the ones who admit their limitations.