Tough Kid

The last few days have been busy. Working, plus sharing in Kay's care, plus the normal family stuff. I keep thinking that Kay's care doesn't really amount to much, just make sure her meds go down, that she's fed and that she gets lots of cuddles. Sounds all so simple, nothing high tech or risky or that requires a massive amount of thinking or physical effort. But for some reason that I haven't yet put my finger on Kay's care takes all of our energy.

Tuesday evening she threw up her feeding tube, before she'd had her meds. Thus we had to wait for the HomeHelp to refit the tube. Then we could give her her meds and then her feed. Because of her weight loss, we're now putting 1 litre per night into her, which is two packets of food. On Tuesday I was less tired than Marion so I stayed up to hang the second package. Got to bed at 1.30am. In theory no problem. But yesterday I was practically drunk the whole day from fatigue. I went to bed early, leaving the late feed to Marion. But I woke at 2.30am and was then awake for a long time. Got out of bed three times to Kay, once because I thought I heard her call, once because she did call and needed a pee and once because the feed pump gave an alarm and needed sorting.

Today Kay gets a blood transfusion. We needed to be at the hospital (Eindhoven, luckily) by 10am, so there was no hanging around in bed. First meds, then prepare for a day at the hospital, etc. At the moment my battery is completely flat. I can feel that I'm at the edge of my endurance, so I plan to take it easy for the next few days - at least in theory. There's no room in all of this for a sick parent. I have to say though that I'm worried about next week: it's a heavy chemo week and we'll be without help at home - Marion's wonderful Aunt & Uncle who have been living in our house for the last two weeks will be on holiday. We'll have to see how that goes.

I have to say that I'm so impressed with the way that Kay is dealing with everything. She's a damned tough kid. Her weakness is removing plasters, that's something that she hates and kicks up a fuss about. However her social-emotional intelligence, if one calls it that, is amazing. She just sat here and had a long chat with one of the child social workers, telling her everything about how she feels and about her worries, etc. Mentally, I'm convinced that she's dealing with the situation incredibly well. I wish I felt that I was doing as well.

She's now getting the blood, which will take a few hours. So we're planning some quiet time for the rest of the afternoon.

BTW, the Slingbox is brilliant. We sat here this morning watching Sky from home on my laptop - amazing.