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 5, 2008

Zac's before Sydney

Zac was born on the 27th of September 2007 he weighed 5 pound 8, he was born 3 weeks early. Zac platelets were 15 the day he was born and he required a platelet transfusion, he spent 5 days in the neonate ward and three days under the lights as he was a bit jaundice. We were home on the 2nd of October and required blood tests everyday to check his levels. I would travel to John Hunter Hospital twice a week to meet up with his doctors. Zac didn’t require any more transfusion as he seems to make a low amount of platelets to keep him going his platelets would sit around 80. By Christmas they were sitting around 50 and from January he started having transfusions once every week and half. We were booked for transplant for August 2008, as they didn’t want to transplant him to early as you can run into more compilation. But by the end of January Zac was requiring more transfusions and he had an eye infection that we just could not get rid of. So the transplant was moved up the ladder for February, we went to Sydney Children Hospital Randwick to meet up with the transplant doctor and start the work up. We were given our date and it was the day before we were going to the hospital when we got the call that Zac had Adno Virus and the eye infection had got worse so Zac had to have three weeks of treatment before you could start transplant. We had the treatment over three weeks. Over this time Zac was requiring more and more transfusions. On our last visit to John Hunter Zac was having a platelet transfusion as his platelets were 15. This day I will never forget my mother in-law Margaret had him on her lap she was trying to fed him before we left as the trip is one and half hours. Zac was not interested in the bottle he just wanted to play. Margaret was not too happy as I was mucking around and we had been there all day. Funny thing was that my mucking around save Zac life. You see as the nurse was flushing the line and just about to hep lock the central line, Zac arrested. I remember standing there watching them work on him but I could not move I had tears falling down my face but I was not crying. Everything seem like it was in slow motion. It was the 28th February 2008. From there we have stayed in hospital Zac ended up with Pneumonia and a bad eye infection and Rodar Virus. They did some tests to try to find out why he had arrested. We ended up finding out that Zac had Mal Rotation of the bowel. Zac bowel was twisting around. Zac required having it operated on ASAP but because of the platelet issue they did not believe he would pull through the operation, so the doctors believe that they wanted to take the chance and leave it till after the transplant. Over the next two weeks Zac was requiring Platelet transfusion one to twice a day and blood transfusion weekly. It was time to go to Sydney so on the 17th of March we did the 3 to 4 hour drive. Fun Fun Fun!!!
17th March 2008.
What a day I left at 5:30am and I arrived at Sydney at 11:35am. Hello do not drive Sydney morning traffic on a Monday, I was meant to be there by 9:00am. Funny thing you know the fear that you feel when you walk in the doors. Everyone is buzzing around me. I remember my tummy was just turning and turning and I just wanted to go home. Lucy walked in and explained that there surgeons were going to look at him about the Mal Rotation as they were worried about his bowel bursting in transplant. Well the doctors came and went all afternoon. Test were done all the next day on the Tuesday the 18th and on Wednesday the 19th Zac went in for the operation on his bowel. He spent 4 days in ICU then back on the ward. That operation seems to take forever I was so glad when they called me in recovery saying he was going straight into ICU but he was doing well. I remember thinking how good it was that he made it through the operation. You see this operation is a big operation but not so bad but because of Zac issues it made it a very major and dangerous operation for him as he had a big chance of bleeding to death. It took a couple of weeks for him to recovery and in that time he ended up with Nora virus.

3 comments:

lisapegs said...

hey sue's its lisa & jaz,we have just looked at zac's website and its absolutley brilliant,even tho it made me cry!!!!!! jaz cant wait 2 see zak again,weve all got a nasty cold at the moment so its best we keep our distance,we love you all xxxxxxxoooxxxxoooxxoooxox

Unknown said...

Hello - I have to say Hello, can't believe there are other WAS boys in Australia! My son Mackie was finally diagnosed with WAS last June. He is 14 (I know!) and while he has had major problems since he was a baby he has been misdiagnosed as having ITP since that time. Hade a splenectomy at 41/2, continual ear infections and now has damaged speech as a consequence, many other viral and bacterial infections, etc etc. Cannot believe there are other WAS boys in Australia - would love to talk to you! We are struggling with the transplant / no transplant decision at the moment (brother is a match but risks are apparently much highr because Mackie is older). Hope I hear from you - if you like my email address is tmpk@austarnet.com.au
We live on the Gold Coast but grew up on the Central Coast and both our families are still there (small world)
Hope to hear from you,
Sue

Unknown said...

Oops - that's tmpsk@austarnet.com.au
Sue

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