Saturday, 8th September 2001 - Day 23

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Well I have reached day 23 of my diary and things are still happening. Mummy and Daddy think they are going a bit too slowly but believe you me it is quite quick enough for me. There is only so many things a little girl like me can do at once.

My pressure is still edging down slowly it is around about 9/10 and an oxygen level of about 45%, the machine is still doing 45 beats per minute as a back up for me and I am doing as many as I can on my own, the machine then cuts in when I forget, this mainly seems to happen when I am concentrating on something else, like weeing or eating or the 100 other things my poor little brain is trying to do. Do you know how many muscles I have to move to make my heart work and frown and open my eyes (one still won't open properly yet something seems to be keeping it a little shut, but the nurses say I should not worry as it will open eventually), I can't be expected to do my lungs at the same time.

Mummy and Daddy came to visit me today and joined in with my care, even more than usual. There I am quietly minding my own business when Mummy's hands dive in and start taking off my nappy, much to my surprise as it is normally done in the depths of darkness when nobody else is looking (or so I thought), mummy gives me a quick clean up with some very soft stuff stuff and I get a nice new warm clean nappy (extra, extra small size). They also both got to give me a feed today as well which is very nice, the nurses even give me a bit on my tongue as this tube down my throat cuts down on the flavour a bit. I am on a whole 4ml per feed today, I will need a knife and fork soon at the rate this is increasing.

The doctors told Mummy and Daddy that I was making progress in the right direction, a little slowly, but progress so that is good. I am listening Daddy, hope you believe me now. I have been keeping the nurses on their toes all day as my blood desaturates (long word that I heard them say so don't ask me what it means) and they have to play with my oxygen levels. I play this fun game where I get the monitor to beep, just long enough for them to think something is happening and then just as they come to adjust it, I make the levels come up again. It is all in the control on the lungs you know, I can only manage it when I am not doing something else as well. The game is great fun and makes sure they do not forget about me.

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Last Updated : 10/09/01.