DAY +197 Life in hospital

DAY +197
29th October 2008

Hi there everyone,

Well what been happening in the last couple of weeks. Zac has had 5 infections, he has had his central line removed and then the next week he had a PORT put in and a skin biopsy. The first Operation was ment to be 20min op but 2 hours later the doctor came out, boy do I hate that waiting you become a mess not that I was a mess. (LOL he he he ) Zac was fine and did not even need oxygen which was great knowing that Zac has Chronic Lung Disease. The second operation was a week later and that was to put in the Port and the Skin biopsy, that took another hour longer. Zac required oxygen for the night so I was watching closely. The skin looks like GVHD, he has all the signs he has the worse stools (poo) and the rash is everywhere he also suffers from eczema the skin biopsy came back negative for GVHD but he has all signs it is GVHD so the doctors are watching him and he is back using the steroids creams and drugs. The doctors are now telling me they want to put in a feeding tube (button) (Peg) in his tummy to feed him as Zac has no idea how to eat and drink and because of the rash on his face he is scratching his face and is pulling the NG feed tube out between once to three times a DAY its driving everyone crazy and causing little bleeds, so another operation is going ahead this week OR next to put in the button. I'm a little funny about another operation I just don't want to end up in ICU and if he ends up Ventilated again there is no way his lungs could cope.
James has been Sick with a cold and so has Troy have not seem them for two weeks and they are coming up this weekend I can't wait. Miss them like crazy...