Saturday, March 27, 2010

So what's your problem?

There's my son - he's 27, has chronic epilepsy, sever asthma, is fed by gastrostomy (a tube directly through his belly to his stomache), can't speak or use his muscles much (apart from to fit), needs airway suction to keep from choking on his secretions etc. etc.
There's me - 61, took early retirement because I was fed up working and it meant I could help with my son.
My wife - the real brains of the outfit, who's forgotten more about my sons care than I or the nurses have learned.
My daughter - who has a life of her own and that's how we want it no matter how much she wants to do.
There are the x2 care provider organisations, both charities, who these days look after my son much of the time - though we still do many shifts and are obviously the emergency backup.
There are Social Services and the PCT (Primary Care Trust - the local health authority) who fund (reluctantly) his care. And a host of service agencies for wheelchair, equipment, consultants etc. etc.

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