So I'm not sure that watching programmes about Great Ormond Street Hospital's PICU department and ethics committee is the best plan at the moment. Especially when one of the doctors highlighted appears to believe that children who are disabled, doubly incontinent, with learning disabilities, are not fully human and should therefore be excluded from his view that life is sacred. I think I know a few children who might disagree with that.
It's also not a great idea to watch a programme based in a hospital when you have a ventilator, a feed pump, and a SATs monitor running. Their alarms will be indistinguishable, and you will spend the evening either jumping up unnecessarily or criticising the nurse talking to camera instead of dealing with the alarm, only to realise the alarms are somewhat more local.
And then, Googling about for information on some of Mog's newer habits, I came across this article, "Indicators of Life Expectancy for Children with Functional and Cognitive Impairments." Which contains the following handy information "An 11-year follow-up study of 128,248 individuals ... indicated that the following factors are associated with a very short life expectancy: immobility; an inability to roll over; limited arm-hand use; and an inability to self-feed... Children who lived to age 1 year or older had higher survival rates, but survival was less than 11 years."
And we're in the middle of some difficult times for Mog. She's very happy, not currently ill, but not breathing any better at night (although thankfully the new intelligent SATs monitor gives us a slightly more peaceful night - I'm only up 3-4 times a night not 8-12), and just showing a few signs that she's not quite where she was a few months ago.
I'd be lying if I said I wasn't worried.
UPDATE: I like this article Swift posted as a comment far better!