Given that Shannon is her sister, it’s probably more appropriate that she write about the time she spent with Mary this week. For my part, I just want to say how nice it was to have her here and what a help she was. It was great having her around, she was great with the girls and she really lifted Shannon’s spirits. Well worth the three week trip to get here I’d say.
It’s just a shame that while she was here I was both ill and a little bit stressed with my stupid work stuff. So I wasn’t on top form. In fact, it’s entirely possible that I was occasionally a bit of a knob. Ah well. I’ve got a disabled daughter – I can behave how I like.
The big news last week, of course, was that Maggie had her gastrostomy operation on Wednesday morning. We were there at 8am, cheering her on as she was wheeled down to the theatre. Although we were told that it would take an hour, or an hour and a half, it took nearly two and a half hours. Not too long to cause us to panic completely, but enough for us to become a little worried.
As it turned out, the operation was a success – although success seems like the wrong word. Particularly because the tube, peg and valve she has poking out of her stomach seem positively Frankensteinian. In fact, it was very upsetting when we saw it for the first time. We had to constantly remind ourselves that this act of butchery was for the greater good. Let’s hope so.
Since she’s had the operation she’s been more distressed. Up until Wednesday she was just about getting on top of going through the night without too much trouble. Now she’s all over the place. Possible causes of her distress are the valve thing itself irritating her, the after-effects of the anaesthesia, more reflux (a possible side effect of a gastrostomy) and general pain. She’s also having problems keeping her food down and vomits with almost every feed - so it’s likely that they’ll look at quantities and timings tomorrow. On top of all that, of course, is her overall condition.
Oh, and the fact that her bum, for some reason, is now red raw. In my experience there’s usually one reason for that: the nappy isn’t changed often enough.
Actually, one of the small bonuses of Mary being here is that she saw first hand how casually-minded some of the nurses can be about Maggie’s care. (Not to cast aspersions on nurses or anything. In fact, I wouldn’t fucking dream of it.)
Maggie had her third home visit today. This would have been better, I’m sure, had she not been afflicted by any/all of the above. But she was and so she was occasionally quite distressed. However, she was also occasionally in good spirits. During those times it was great to get a better feel for her and for us to be more relaxed about the way we handle her.
For me, being at home makes a massive difference. I don’t like the hospital – duh – but I especially don’t like the restrictions it places on my interactions with Maggie. Maybe it’s just me, but it always brings out a degree of self-consciousness.
So today Maggie responded very well, as usual, to vigorous horseplay. She liked having her feet bitten, as well as the palms of her hands. This alongside the rough and tumble of having her arms and legs pulled this way and that way. Personally I think it might be a good idea to incorporate mouth stuff in this general play so that it becomes, for her, another area of fun.
We also dabbed water on to her lips in order to encourage her sucking and to get her lipsmackinthirstquenchinacetastinmotivating.... It was moderately successful. I think we could be a little more daring in this area, perhaps introducing a number of different tastes and textures. The worry is that she’ll choke, although it does seem unlikely.
But hey, what do I know?
All in all, I’d say she had a generally good day today. When she was in good spirits, that is. And when she wasn’t vomiting.
Below are some pictures of the past week. There’s Mary, Shannon’s sister; our friends Tara and Louise who visited us at the hospital yesterday; and Alice’s most favourite person in the world: Samuel Beckett. She stares and stares at that picture of him and often chuckles away at whatever conversation it is that they’re having. Good old Sam, always good for a laugh.
Talking of dead great writers – or, rather, great dead writers – it was sad to hear of JD Salinger’s passing this week. His short story, For Esmé, With Love and Squalor, is one of the best things I’ve ever read. If you haven’t read it, I’d highly recommend that you do.
Click the pic to see the pics: