Doctors came, it's a line infection on top of other infections. I'm now on 6 different antibiotics. My belly is full of fluid which is pushing up on my lungs and restricting my breathing and making me tired at times. Hopefully things will start to improve, well, they have to. Doctor said its my bowel causing all these problems and infections and may need to have regular cycles of different antibiotics to keep on top of things. There has also been talk of reducing the fats in my TPN bag which they are hoping will help with the fluid retention. I'm having to live in pyjamas because my clothes are too tight with all this fluid in my belly and the rest of my body. We are hoping this line infection will respond to these new antibiotics otherwise I may have to have my line out and a new one put in 72 hours later. Not good, because this could start messing with my arteries and cause them to close down as I've had so many different lines in various parts of my body in my 6 years of life already. This could also affect my chances of a transplant in the future if things deteriorate further and it's my only option. So fingers crossed we don't have to mess with my line.
Nothing's stopping me from flirting though, I'll always have energy for that!! I've been a bit more awake this afternoon and managing to play for small periods. I'm just enjoying having my foot rubbed by one of the support workers at the minute. (I have these ladies wrapped around my finger).
Guess what.. I'm still smiling..
((hugs)) you are one brave little boy xx
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