Gradually getting on top of things. Agency nurses who know him, now doing sons day care until things get sorted out. We did part of yesterdays daycare ourselves with a substantial part being picked up at no notice by one of his 'bank' nurses - if this wasn't an anonymous blog I'd thank her by name, but she knows who she is - a star. Suction machine seems mended, wheelchair services are looking at kerb climbers (but it'll take a month or two), new intercom on order and temporarily replaced by loan from us. Mum still unwell but sister keeping an eye on her.
Unfortunately, son looks like he may be developing another chest infection, oxygen saturation was low yesterday evening and he's been having some longer fits last few days. My wife took him to GPs to discuss treatment this morning and he's back on antibiotics (only managed 5 days off them this time). We're afraid he might be developing a consolidation on one lung again so it's all hands to the physio pumps to try and stave it off. We're very lucky having a superb physiotherapist (not NHS, employed by his service provided) and he's trained us and the nurses in a range of techniques. Unfortunately, it's hay fever season and due to poor swallow reflex, it's a 50/50 chance whether the secretions go down his airway or his digestive tract - hence the need for suction.
On the upside, GP has agreed that my wife can be 'clinical lead' in his care formally. The lack of anyone in that role has always been a bit of an issue - not sure how the care provider organisations are going to react yet. She used to be a ward sister before the children, so although her registration has lapsed, she's been 'de facto' clinical lead most of his life. If it hadn't been for her skill he wouldn't have got anywhere near this far but it's hard getting 'professionals' to accept it. Although she doesn't have a current NHS PIN number, she does have 27 years specialist experience on top of her general nursing training and is actually better qualified than the rest of the nursing team. There isn't really a status of Expert Carer, but there should be.