Wednesday, 13 January 2010

The Big Meeting

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.


  1. Sweet girls!

    I've been anxiously waiting for this update.....thanks for the promptness, Paul!!!! I must say that I had an extraordinary fantasy that Maggie's gastrostomy could be done before I got there and she could be going home while I was visiting. It was a grand vision that brought tears to my eyes. Clearly I don't have a medical background to know the complex process of such a procedure. But it sounds like this is the best thing for her and hey....while they are in there, they can take a peek and see what the reflux thing is all about.

    I hereby declare that I will gladly be on Alice's babysitting least for the 6 days I will be there. However for her own benefit you should probably choose not to use my services until I have had at least one full night's sleep.

    Maggie and Alice continue to be proudly displayed as the background on my work computer and I show them off whenever I can. Texas people who you have never met continuously ask about updates on Maggie and Alice and cheer on all their progress.

    Can't wait to see you all!!


  2. Firstly, please don't take Alice on any trips to Venice just yet. Great cardy but quite scary on a dark night...

    Secondly, who is Mary? (Above.) she sounds so lovely, can I share her? In fact I'm always struck by the warmth of all your friends and family on here...

    But on to more serious stuff. Well done for surviving the big meeting. Your write-up has hit the nail on the head for me. It's so frustrating to sit there and realise that you have all of this epertise in one room but nobody seems prepared to take the lead and everyone seems so focussed on their area of expertise and ignorant of the wider issues. I guess it's because our kids are so complex or, rather, fantastically unique.

    I will email you properly soon but I wanted to say something about your comments about Maggie being disabled. It's very difficult to put this into words without sounding trite or as if I'm making light of the situation. Trust me when I say that you won't see Maggie in the way that you see "disabled" children. Maybe this is down to the natural parental instinct which makes us all believe that our own children are the most perfect creatures on earth...but it's more than that. I still look at pictures of "disabled" children and don't make the connection with Tom! I never forget that he has cerebral palsy and he is disabled as these are daily realities yet I just don't feel that he is one of those children in the pictures. I s'pose it's because I see him everyday I therefore don't notice stuff. It's too hard to explain. I just remember torturing myself about the future when Tom was a baby and now it seems weird looking back. I'm not saying that the pain of knowing about his condition has got any easier but it isn't how I thought it would be. It's OK...and it will be OK for you. Mmmm...that was such a cleverly worded piece: "OK" is all you can come up with Helen?

    You will get through these dreadful early days and through all the crap the system throws up and there will be days when Maggie will delight and thrill you and make you smile just like Alice and your other children do.

    Call us any time.

    Good luck with the op. I think it's a very good way forward.

    Helen & Co

  3. I had to look up gastrostomy. Sounds like a good move forward, as awful as it is for such a tiny baby.
    But what do I know? I remember writing something about the fact that babies grow out of stomach pains. Silly me. Sorry, I simply don't know what this must be like. And I don't have anything eloquent to say, just that I wish I lived near you as I would be more than happy to come over and babysit that lovely cheeky Alice.
    I don't have a disabled child so I cannot confirm what your friend Helen writes, but it rings very true. You will be ok, I'm sure.
    You'll have to be, right?
    As you see, no wisdom just love & the very best of thoughts form all of us here xxx Wini

  4. I remember discussions about taking May home with a tube down her nose and I was totally horrified by the idea. I can completely understand what you are talking about.

    Glad to hear that you insisted they consider what you want for your child alongside their medical judgement. And congrats in general for getting through the meeting at all. They suck.

  5. I've been reading your blog for a while now, along with mamalewis'. I've felt drawn to reading about those in a semi-similar situation to mine. My daughter Emma was born in August she suffered a lack of oxygen at birth and didn't breath for 20min. She had a treatment where they cooled her for 72hrs. She was in NICU for a month. Her MRI showed serious damage to the basal ganglia, we are expecting a dx of athetoid cp at some point. She came home with an ng tube and an expectation that she'd have a gastrostomy, however with intensive oral stimulation and perseverance we had her exclusively bottle feeding ebm after a week. SALT were shocked, but in hospital no one had the time to dedicate to this. Also Em had/has very bad reflux which i think is common in cp babies, so that made feeding extra difficult but with the right meds its really under control now. We had the bleakest picture painted for us of her future, I think her brain was in shock for a few months, and then it was like she just started coming to life. Its the most difficult time but gets much happier once they're home, my thoughts are with you often xxx

  6. Thank you for the comments all. And thanks for sharing your own experiences - it's good to get that extra insight.

    Sorry we don't often respond individually. You know how it is.

    But if 'Princess Creampuff' Jo is reading this - I looked for your blog on Wordpress but couldn't find it. Do you have a link?

    Love to all

    Paul x

  7. Mary is Shannon's younger sister, proud auntie of Maggie & Alice and the girl who is anxiously counting down the days....leaving a week from tomorrow from Austin, TX to come tightly squeeze her big sister and smother Maggie and Alice with love! Thanks for the lovely comment!

    Mary :)

  8. the meeting and news were full of ups and downs. to be expected. there will be no single moment when clarity strikes and an answer is given. but... i think that we should try to impose a timeframe on either of the girls, nor the two of you. love each other and show it everyday. love the kids... all of them... and tell them that you love them all often.

    mary will have to hug everyone for me. maybe she can set up a video chat with google while she is there so we can all chat and see each other. too bad you dont have a mac at home. 8(

    love to you all


  9. Thanks Bob. But we do have a Mac at home. A very fine one at that....

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