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.

Monday, 16 July 2012

Wednesday Operation and etc.

It’s been a long time since the last post. Not because nothing’s happened but because I got a bit fed up with the constant moaning. My constant moaning. It’s enough to depress anyone.

Also, I’ve been spending the little spare time I have teaching myself to play the piano. It’s going very slowly but I’m loving it. I’m doing it partly as an escape and partly, I have to say, because it’s something Maggie will never be able to do. Unlike her, I have no fucking excuse not to do something I’ve always wanted to do.

I thought I’d write this post, however, in advance of Maggie going into hospital on Wednesday for the operation we’d previously mentioned. As you may recall: it’s so she can be fed through a tube directly into her bowel or intestines or wherever. The idea is that she won’t be able to throw her food up and will therefore put on weight. The other idea is that she’ll be plugged in throughout the night so will need to take a little less feed during the day. That is, it’ll free her up a bit. It’s a dual peg thing that enables her to be fed through her stomach, as she is now, and also through her intestines. Lovely.

She goes in to hospital on Wednesday and could be in for two nights. But hopefully just the one. Shannon will be with her the entire time.

In the past few weeks – or months – Maggie has been up and down. The worst thing, by far, on a day-to-day basis is her continued lack of sleep through the night. We’re still up with her at all hours and we’re still knackered and depressed about that. It’s like having to live with a difficult new-born baby – something we’ve done for almost three years now. We’re slowly introducing her to the sleep system which will hopefully improve things but needs to be done for her physical development. She needs to be able to sleep on her back: something she’s never been able to do due to the constant vomiting. Her newest thing is to wake at 4am and stay awake. Really, night after night of desperately trying to get her back to sleep while the sun’s coming up and the bastard birds are banging on is one of the least fun things we do. It’s then that I’m, in particular, at my lowest – when all the bitterness and sadness and hate comes flooding in.

She also takes at least two hours to get to sleep in the evening.

Outside of the sleeping issues, she’s made some good improvements. She’s a much happier kid during the day. Much more communicative and responsive and delightful to be around. She loves nursery, playgroup and the School For Parents at Scope.

She’s still taking certain amounts of food orally and was coping really well with it. Not enough to sustain her – not nearly enough – but enough to give us some hope for a better future. However, recently she’s pulled back a bit. She was really enjoying eating custard (and almost exclusively custard) but now takes just a few mouthfuls before signalling she’s had enough. The worry with the operation is that she’ll end up permanently full and be even less inclined to take food orally.

One of the biggest problems we had with her –as you may recall – was her refusal to travel in the car. She’s mostly got over that now and will happily sit there for some time. So that’s a nice victory. She’s also much better in her pushchair. In both cases, however, she has to be constantly on the move.

I’d say that overall, things are better with Maggie. But overall with us as a family – I’m not so sure. The lack of sleep is completely depressing and demoralising and is making us both ill. I don’t know how much longer we can carry on with the way she is. It affects everything.

We’ve also come to the stage where we’re just crushed by the sadness of knowing how she should have been. I think this is largely to do with Alice being the way she is – bright and lovely and stepping out into becoming a proper little kid. We’ve both said many times how it hits us when we see Alice running off to play with some kid in the park – you know, that she should have been doing that with her sister.

As for the two of them together – they’re very sweet. Maggie idolises Alice and anything she does will make her laugh and smile. For Alice’s part, she’s obviously got a real affection for Maggie and is starting, I think, to realise that there’s something different about her.

There’s probably loads more I could write about, that I’ve either forgotten or can’t be arsed to recall. So this’ll have to do. I’ll write more later in the week, after her operation.