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.