Wiskott Aldrich Syndrome is a immune and blood disease that effects the immune system the B and T cells, you have an increased susceptibility to Infections, Bleeding and Cancer,aswell as delevoping an autoimmune disease without a transplant, Wiskott Aldrich Syndrome (WAS) is potentially fatal.
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Wednesday, October 29, 2008

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...

Saturday, October 11, 2008

ZAC IS BACK!!!










DAY PLUS 179


11/10/2008




Hi There Everyone...


The Photo's are of Zac FIRST BIRTHDAY down at the Unit in RM House thanks to the Doctors letting us down there for his birthday.


Zac is back in Hospital, what can I say we got out of hospital ward down to RM House on the hospital grounds for 5 days it was nice but Zac got sick and was put back in the ward. Zac has Staph and Ear infection and a bowel infection plus a rash, Yes the rash looks like the GVHD has flared back up. I have not been been home yet I have not seen home since Feb 2008 8 months and counting he he he....


Zac still smiles everyday though, thats my boy, I bread them tough.


James is such a loving brother he just dotes on Zac and Zac he just laps it up. James was a little upset this week with Zac back in the ward and I brought up a toy to Zac that Troy's mum brought him but James has been minding it for him and james did not want to share, so we had to go through the sharing is caring game. James spent alot of time last weekend in the starlight room he was singing and making cards for everyone. James is growing up so much it is hard to believe that my little boy is a big boy now and it is funny but you think back to all the hard times I had with James in transplant and not knowing if he was going to make it and look at him now he is such a cutie full of life and cheek boy that boy is full of cheek, but I dont mine he is learning to make his way in this world and he is doing a good job. I'm very proud of James he is a tough boy...


Remember dont loose faith you never know whats around the corner.
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