26 February 2013 A bad night

Yesterday was a reasonable day for DD. Her weight had gone down to 30.9 kg after London. I don’t know whether this was because she was moving around a little bit more than she usually does and so shifted more fluid. She certainly ate well while we were there. Yesterday it was back up to 31.4 kg, which is still good for her, so things were looking OK.

By mid evening though she was feeling sick and her stomach was hurting. This ended up being a pretty much all night D&V session. OH did the first couple of calls, during which she lost a whole load of meds twice, so we gave up giving them. Then I took over and spent most of the night on the floor in her room (I’m too old for that) just letting her know I was there when she had a painful stomach cramp and otherwise feeling tired but mentally wired and playing solitaire on my phone.

Today she’s slightly better, has come downstairs to watch a recording of the Oscars ceremony. She is still having cramps so doesn’t want to brave a piece of toast yet. Can’t say I blame her. It’s hard not to be able to feed her anything. She’s so thin now, with a distended stomach from fluid. Basically what you see on an Oxfam poster. But so beautiful. If I make a circle with my thumb and index finger it can go round her arm just above her elbow. Scary. How the hell she is fighting off this bug (if that is what it is) is beyond me, except that she has always had the constitution of an ox. The women on my mother’s side all live into their late 80s, and she must have inherited that strength along with, unfortunately for her, some dodgy genes on both sides.

It was my birthday on the day we came back from London and DD gave me the box set of Mrs Brown’s Boys (my guilty laugh out loud pleasure) and a card in which she wrote:

To Mum,

Happy Birthday. I hope you know how much I appreciate everything that you do for me, and that I love you more than I can say. Thanks for all your help this year. Have a great birthday and enjoy the present.

All my love DD xoxo 🙂

She is such a fantastic girl. To think what she might have achieved without this curse of CHD. And to think of everything she has achieved in spite of it.

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