Another one of the same please

I've had a better day today - even the consultant doctor said that another day like this would be good. I haven't made heaps of progress, but I've kept stable and my oxygen requirement has got to a lower level. What I have learnt today is that at 21% level of oxygen, that's actually 'air', like you breathe. I've been down to 28%! I have been a bit fidgety though so they've given me a sedative - not a paralytic but a sedative to help me sleep, which I did a lot more this afternoon and this evening.

I've wee weed more today and they've decided to give me one less dose of diuretic. They're giving me another 0.5ml per hour of Mummy's milk and they're giving me more fluids (lipids etc), I'm not so puffy now I don't think so they can do this now. I hope that my lungs are less squidgy.

What else, I've had the pink plaster on my ventilation tube replaced as when they did a lung x-ray they saw that it was a bit too low in my lungs. I kept on pulling out my food tube too, although the sticky tape keeping fixed to my chin didn't stick very well.

Daddy saw me this morning and put his hands on me to calm me down a bit... Mummy sat there for hours with her hands on me to keep me still this afternoon. I hope that I make it through these tough times, that there's no other significant problems and that I'm OK later in life. There's no way of telling about this other than to go through things in due course - Mummy and Daddy find this difficult to deal with as there's no answers for any of their questions - not even the doctors really know as they are just focused on saving my life no matter what the future may hold. I can't answer them, which is difficult for me too, we'll just have to wait and see... what we have to endure we'll do together...