Thursday, 19 July 2012

Maggie's recovery and struggle (Shannon)

I feel like such an idiot. In the face of surgeons, doctors, nurses and dieticians at the hospital, I forgot that we know more about how Maggie will cope with things, like an operation and changes to her feeding, than they do. I listened to them, and their little list of potential, mild side-effects, and they were wrong. Again. They told us what it looks like on paper, how it would work with a normal child. But Maggie's not a normal child - she's severely disabled, with a serious reflux condition and weak stomach muscles and a body that's very sensitive to feed changes. She's never responded the way it says on paper she should, and yet they - who have been involved in her care for over two years - still keep referring to the fucking paper.

I forgot that, and so I wasn't prepared for last night. For Maggie to wake up at 11pm in pain from the surgery, from the new, bigger tube pushed through her stomach and into her intestines. They said at the hospital they'd 'just' stretched the tract that was already there with a bigger tube and pushed it a bit further down so it shouldn't really bother her. They didn't say she might develop a nasty cold that kept her up coughinga and distressed the whole night. They didn't say that she might vomit, and it might have blood in it from the trauma of the operation. And when we rang the hospital at 2am to report what was happening, they didn't ask if the vomit had any milk in it - which should have been the first thing they asked because if it did, it would have meant that the tube had moved and we should immediately come back up to the hospital.

We know all this now because one of our community outreach nurses went up to the hospital to see us and was surprised, and angry, that we'd been discharged the previous day. Because she knows what it says on paper and what actually happens for many, many of the disabled children under her care. She told me the blood in the vomit could have been expected and that we shouldn't be too worried about it. And about being aware of the milk in her vomit while she was being fed into her intestines. And that it isn't 'just' a matter of pushing a tube a bit further down - it was a tube 50% bigger than what her stomach and body were used to and it was bound to cause pain and discomfort in the early days. And she told me what I'd forgotten - that Maggie has always struggled with changes to her feeding and this was a big change that would take time to adjust to, and would be a difficult thing to adjust to. Most importantly, she told me what to do about it tonight and she's coming to see us tomorrow morning to tell us, from her experience, how we can best manage things over the next week.

By the way, it's this same experience that the local authorities and NHS are completely ignoring in their budget-cutting exercises as they try to justify suggestions that a newly trained nurse could do the job of these community outreach, complex needs nurses. They can't. And losing their experience and advice and care would be a real blow to us and, I imagine, to the other families with disabled children that rely on them.

So, I feel stupid and I'm angry with myself for letting Maggie down. She's slowly feeling better, trying to give us little smiles, bless her. She'll get there, because she always does. But it would have been nice for her to have better help along the way.


  1. You havnt let Maggie down Shannon. The NHS, apart from your outreach nurse (who sounds she ought to train most of the people there) have. End of. Much love. Jo n Kelvin x

  2. Had to comment but jo'n'kelvin have said it already. You didn't let Maggie down. You're doing the best you can. Possibly, hopefully, some of the people you deal with in the NHS are too. Sadly, it's not good enough. Really hope it settles down soon and you see the improvement in night-times that you are hoping for. x

  3. Shannon you are not alone in having to entrust a loved one to a system you have, through experience, little trust. You and Paul never let Maggie down and always fight her corner even when you are exhausted and frustrated. Don't beat yourself up because of other peoples inadequacy; you and Paul do the very best you can.

  4. Far from letting her down, you two do (and have been doing, since the day she was born) a fantastic job of caring for her, fighting for her to get the treatment and care she needs from the NHS (although it shouldn't have to be like that).

    You love her, and look after her every need as best as you possibly can. YOU are the ones who know and understand Maggie's needs, capabilities and her personality. I hope that you all get some much-needed peace and rest very soon x x

  5. They let Maggie down. Not you. I haven't responded to your blog for such a long time but i have to tonight. I feel so angry for maggie and for you and Paul. This all sounds so horribly familiar. Really hope Maggie starts to pick up soon. Come and see us some time - we'll look after you for a while. Helen x

  6. Dear Shannon

    All of the above. The one thing I am sure of is that you and Paul have never, and will never, let Maggie down. Only the system does that.

    Credit to the Outreach Nurses - sounds like we need more of them, not less. I really hope lots of people, particularly those with political influence, read this blog. Those who make decisions about our health service should be much more aware of the difficulties people like you face simply 'dealing' with the system.

    Aside from that, it was lovely to see you, Paul, Maggie and Alice the other week. You have two gorgeous daughters, both with captivating smiles. They are so lucky to have such loving parents.

    I was particularly struck by how alert Maggie was. How she was very aware that I was someone new. How she was determined to hold my fingers (in a vice like grip as soon as she made contact).

    This alertness and responsiveness was completely at odds with the idea (which, judging from your earlier posts, her doctors had) that her condition would make her passive and unaware of her surroundings. We should all be very aware that even severely disable people are still human and, as such, can be extremely conscious of their world - much more so than textbooks might predict. It's particularly important that medical professionals don't ignore or dismiss such the real life evidence just because it contradicts their initial assumptions and academic learning.

    Best wishes to you both.


  7. Hi Paul & Shannon, it's Rachael from the royal. I've just read back on the last year of posts. I think I was hoping to find that things had miraculously got easier for you both but it looks like you have had another incredibly testing year. Both your girls look gorgeous. I hope things are better than they were in July following Maggies operation.
    I'm pleased to say that I'm a mummy too now. Sophie was born early and spent 9 weeks in Nicu late last year. I still have my moments everyday despite her being perfectly well now and thriving. I honestly don't know how you do it.
    You don't need me to tell you this, but you are both incredibly strong people. Your girls are lucky to have you as their parents.
    I wish your family lots of love and happiness.

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