We had our big meeting at the hospital today. It was a bit like this:
As you may know, we’d been nervously looking forward to this meeting for a while. It was our chance to get everyone together and, as people sometimes still say, get them on the same page.
Singing from the same hymn sheet. Drinking from the same glass. Pissing into the same trough.
As it happened, this happened: we decided that they should go ahead and give Maggie a gastrostomy. There were some grumblings about this, from the lead surgeon and the consultant pediatric dietician, but as they were both relative latecomers to Maggie’s condition they didn’t have the whole picture. So the meeting largely consisted of a lot of back and forthing and weighing up the pros and cons.
The frustrating thing about the meeting was that no-one seemed prepared to lead it. Or to make a firm decision. Perhaps because they were all there representing their own fields of expertise – physiotherapy, speech and language therapy, dietician, health visitor, surgeon etc.
The gastrostomy could make things easier. It might not help with her reflux but it could well help with her sucking and swallowing. It’s possible – and likely – that having a tube shoved down her throat and strapped to the side of her face has contributed to a general pattern of oral aversion. Once freed from this intrusive paraphernalia she may well begin to feel more positively about anything to do with her mouth, throat and face.
The problem with the surgeon and the dietician was that they tended to want to grapple everything from a solely medical viewpoint. So this meant that they had to be made aware of – and become sympathetic to – issues outside of pure medical treatment. So, for instance, accepting that for Shannon and I it’s simply not very nice to see Maggie with a tube strapped to her face all the time. It doesn’t look nice, it doesn’t feel nice. And as much as I’d love to be able to say that it wouldn’t bother me what other people would think when they see Maggie, it would. Really, I don’t want her, and us, to be objects of curiosity when we’re out and about. Especially not now, when she’s so young – because now is probably the only time that she’ll look relatively normal. We’ve got a lifetime ahead of us to be gawped at by idiots.
The other main issue discussed was Maggie’s reflux. There was, some time ago, talk of her having an operation to tighten up her lower valve thingy. When it was first mentioned it seemed that the operation was very simple and straightforward – that while they were in there sorting out her gastrostomy they could just tighten up her valve. Apparently, it’s not that simple. Not at all. And there are a number of side effects – not the least of which would be the inability to burp and vomit.
So the problem here, again, was weighing up the pros and cons. In the end it was decided not to go for this treatment and see if we can continue treating it medically. Or see if it subsides as she gets older. But while they are in there, sorting out her gastrostomy, they’ll have a look to see if there are any obvious reasons why her reflux is so bad.
The other issue raised during this meeting was the ongoing problems with consistency of care. The basic stuff. Such as not lying Maggie on her back or remembering to do her speech and language therapy. What we got here was mild defensiveness and excuses but an overall commitment to get things sorted. Which is important because, despite the fact that she’s having the gastrostomy, she’ll be in the hospital for at least another couple of months.
But on that note there were also noises made about us taking her home every now and then. To get us, and her, used to it. And to hopefully help get her body clock re-set so that she can sleep nights. Before we do get her home, however, they’re going to look at her feeds to see if she can go four hours. Again, it’s about getting the balance right: bigger feeds in the past have often led to more reflux and vomiting.
The worst thing about today was being reminded of how bad Maggie’s condition is. We should be under no illusions really. But occasionally we forget/hope. At one point the physiotherapist was talking about the stiffness in her arms and the lack of tone elsewhere. It was very strange – and very, very upsetting - because it just made it all so real: our daughter is very seriously disabled.
Shannon’s at the hospital with Maggie at the moment. But I’ll get her to write more – and more about the meeting – soon.
On another, related, note: Alice was babysat for the first time today. By our friend Emma, who did a sterling job of looking after her for a couple of hours while we were at the meeting. She was a good girl too. Alice, that is. So yes, if you’re reading this and wondering whether you should offer to join our babysitters' roster – please do.
Click the pics to see new pics. There’s a lovely one there of Alice auditioning for the part of the dwarf in the remake of Don’t Look Now.