Tuesday, 29 January 2013

More of The Same

Maggie's just been rushed to the hospital because the feeding tube that goes deep into her gut came out. The hole that's left in her stomach heals fairly quickly so they have to shove the thing back in as soon as they can. Actually, that makes it sound more straightforward than it is...

The last time the tube came out they couldn't fit one because they didn't have one. Despite the fact that they should have had one. Why didn't they have one? No-one knew. Just one of those things. You know, the usual hospital bullshit.

Shannon rang this evening to check whether they've got one this time (which they should have because they promised us, what with lessons being learned etc.) and they had no idea. No-one was answering the phone down at the department where they keep all their tubes or wherever it is. But she's gone up there anyway.

The reason I'm writing this, really, isn't because this is out of the ordinary. On the contrary, it's because it's all so commonplace. To the extent that we've just sort of accepted that Maggie has so much shit that she has to deal with. And I think this is why I haven't updated this blog in a while: because it's all so much a part of her everyday life that it hardly seems worth mentioning. Or worth moaning about. It's just the way it is.

But occasionally it gets to me a bit. So I write something like this. And although nothing changes, it makes me feel a little better.

Update: Maggie returned home last night with a makeshift tube that only allows for daytime feeds - rather than it being the combined tube that allows for overnight feeding. As I mentioned, they're supposed to have the proper tube at the hospital - especially because they promised, after last time, that they would have. We've just been called by one of the surgeons from the hospital: they've had to order a tube and don't know when it'll be delivered. Hopefully by Friday. When I pointed out to him that they were supposed to have one on site, he replied: "Ah, yes, er, well...".

As I said earlier: the usual hospital bullshit.


  1. Sorry she has to go through this Paul. Hope it's sorted quickly. And you are spot on, it is commonplace and it is bollocks. Love to you all. Helen xxxxx
    PS If they could just find a really massive tube, I'm sure I know where I'd like to shove it.

  2. But it is worth mentioning - it really is.

    Because that's not the way it should be and more people should be aware just how difficult life is for disabled children and their parents. Society should do better - but unless more people really understand the need there will be no pressure to change.

    I wasn't exactly callous before I read your blog but you sure have opened my eyes to the daily grind that people like you have to suffer - and it has made me much more grateful for my quiet life.

    It's all to easy to assume that 'the big state' will deal with every problem, care for every vulnerable person, admit its mistakes and treat people with care and dignity - but that complacency is woefully out of place, as your blog testifies.

    We need to know that - as a society, as voters, as parents - as fellow human beings. We need to be reminded that we should never take our comfort and security for granted - and that we should do what we can to help and support those less fortunate than ourselves - if only because one day it might be us that needs the help.

    Heartfelt best wishes to Maggie, Alice and you and Shannon.


  3. Oh for fuck sake! Is there no one there who actually takes responsibility for the way they treat patients?

  4. What a complete piss-take it all is. I wish your little girl (and you and Shannon of course) didn't have to go through all this distress. Love and best wishes to you all x x

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