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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Saturday, July 26, 2008

THE FIGHT IS ON AGAIN

26th July 2008
Day Plus 100...
Well it has been a couple of weeks since I lasted updated everyone on Zac and a lot of happened over this time. First Zac has had a Pericardium effusion which is fluid around the heart a pericardium is the sack that sits around the heart. On the 1st July 2008 Zac went to emergency surgery to drain the fluid out they also stuck in a drain so it could be left to drain. Because of Zac issues they sent him back to ICU which should have been one night, but by the next day he was working so hard they placed him on C-Pap. I didn’t think this was going to work but he seemed to settle a little with it as most babies will fight it, by the following day he had got a little worse so he was put on Presser support C – Pap. The results of the operation had come back and they found that he had Adeno Virus which was in his lungs and this had caused the pericardium effusion. The doctors have placed him on a drug which is subtoxic and treated just like chemo and the drug is called Cidoforir. The problem is with this drug is that it can cause Acute Kidney Failure which Zac has had and his Kidneys are not the best still, so giving this drug could cause more problems with his Kidneys.
On the 13th July 2008 Zac ended back on the ventilor. He now has VOD again which is all most unheard of to get it twice VOD is Veno – occlusive Disease the doctors are also thinking that he might have Adeno Virus in the liver and maybe GVHD of the Liver which is Graft versus Host Disease. Zac has fluid on his lungs and around the head not in the brain just in the tissue areas, everywhere you look he has fluid my poor baby is so big that he has to wear a adults nappy as none others fit him, it is all fluid though. Plus now that the drain has come out of the heart the fluid has started to build back up there too so another surgery might have to happen. The doctors have this is an big issue that Zac is back on the ventilor as he might not every get off it which means (not make it) but that’s not going to happen. Every day that Zac is on the ventilor is everyday he losses a chance of getting off it, this also means that it is every day the ventilor is messing up his lungs as Zac now has Chronic Lung Disease and Fibrosis of the lungs. So the plan of action is next week Zac will go into more surgery and have a Liver biopsy and Lung Biopsy and well as a drain in the lung. The surgery is a little more risky for him as they will have to cut Zac open to take the liver biopsy, they don’t normally do it this way so the risk of bleeding is a bigger chance, they will have to cut him open in another two other places on top of that one for the lung biopsy and one for the drain so there are three cuts so three chances of increased infection and bleeding plus now they are talking about maybe and I say maybe also doing the heart surgery all in one but they will think a little more about this over the weekend. Once I know the results I will let you know.
Yestarday my dear friend came in Kristy and her partner Joe which I take my hat off too. It took BALLS you two big balls and wipe that smile off your face Joe. Today they came back to ICU with lots of gifts Which I think I might help myself to the after dinner mints yummy for all the staff here hey I have been here for 5 months so I think I’m part of the staff and a beautiful letter and pictures to say thank you for everything. My friend then saw my boy, WOW girl you surprised me I did not think you would have done that and I thank you. I think all the nurses where happy to see you two as they always ask after you and some never got to see you after you left. To anyone who does not know Kristy then click on my link for Skyla blog and read and meet the most strong and beautiful family around. I will update you all about Zac later on after I know.
See ya later

2 comments:

Anonymous said...

Hi
I am another Aussie mother whose kid is two years post transplant and doing well. You are welcome to contact me if you want to talk.
Belinda

jbfriedman@optusnet.com.au

Phone - 03 9528 4872

Thinking of you..

krystal said...

Hi Suzie Q
Just ashort message to say your a wonderful person and doin an awesome job raising your two boys and keeping your family together, my utmost deepest wishes to you and your family and thank you for being my friend throutout oour stay in hospital.
Kisses and Hugs
Dallas and Krystal

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