THE RESULTS

31st July 2008
Day Plus 105
Zac results are in and they say Zac has reflux which I already knew, and that he has GVHD of the Liver and his Lungs are damage. So last night they started him on steriods to treat both. The ICU doctor said that in most cases there is a 80% success rate with using steriods for the lungs getting the childern off the ventilor but he said that Zac did not have the same percent he thought more around 50% which I am more than happy with. The poor little boy he is so puffy that when he has his eyes open it looks like they are closed you have to look real close and you see they are open. There was talk about putting on back on the hep filter again (diylsis) but so far no my nurse said today its not ruled out but so far he is going GOOD. So fingers cross people that these steriods are going to work and we it off the ventilor and go home. I can't wait maybe im wrong but feel inside at this point everything is going to be ok. I hope so that is.

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The Operation Day

28th July 2008
Day Plus 102

Today was a big day. Zac had his operation today 3 hours it went for. They ended up doing the Liver and Lungs and they did his Tummy in the biopsy, so the results should be back on Wednesday. Which I will let you know. He had a small bleed in his lungs which they got on top of. The doctor also fractured his ribs trying to biopsy the Lungs. He has a drain in which is draining a little not much mainly at the moment, but I expect that to settle over night. A child in ICU has come down with chicken pox's Even though Zac is in his own room they are going to give him the ZIP just in case. The doctors said that his lungs look pretty bad they are pretty damage red swollen and inflamed, they said his lungs are like cardboard and that's why he had the bleed.
He is requiring more support and more ox so he was on 40 to 50% but now he is on 65 to 75% hopefully this will come down over night. Fingers cross anyway.
My other little boy James said he looks like a sleeping Zac to me mum can I go in and kiss him so we had to explain that he need to leave Zac to rest up for now. James has gone home tonight but I will see him on Friday night can't wait to see him, he is growing up so fast and getting more cheeky too.
There another family with a little boy name David please click on his link under my blog list he is day plus 700 what a beautiful family there story will also be able to shed some light on Wiskott Aldrich and David journey through all this and any question please feel free to ask I'm more than happy to help if I can.
Skyla's Pic is up in ICU now and it looks beautiful. Skyla mum Kristy has been my strength she sms and rings me nearly everyday well everyday. Always giving me support being a great friend when she has her own problems, so thank you mate thank you for being a great friend it is lovely and I don't know what I would do without you. Miss ya heaps .
Talk soon and will update on Zac results as soon as I get them.

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

Cute

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Zac Sick June 2008

23rd June 2008
Day Plus 67!!! Zac is very unwell today and he has moved rooms so he is right next to the nurse’s desk. The transplant team have been in and have said if he does not start to improve soon or gets any worse we will be back to ICU. Come on my little boy. On Monday they sent him off for a CT scan but it did not show much, I wish I knew what was happening to him. His heart rate when he is sleeping is 190 and resp is 87. Fingers Cross he gets better. Zac has had a blood transfusion today. He is dropping some of his bloods.
26th June 2008
Day Plus 70!!! Zac tummy is huge and he has gained 567 grams in 12 hours, I have this feeling he is holding fluid again. His rates are back up again today and his tummy is about 54cm. He is also bringing up a little bit of blood. His platelets are dropping down again to they are down to 69, which is still good but a little worrying because they were 140. Hopefully all is going to be well.

29th June 2008
Day Plus 73!!! Zac is still sick, they have moved us up to another ward and boy I’m not happy about it. Zac should not be on other wards but our ward has closed down because of the Nora Virus and infection control have said that everyone has to leave, so they can clean the ward and then everyone can come back as long as they are not sick. Zac is crook he has fluid on the lungs and in the tummy his tummy is 58 and half cm. His heart is showing it is enlarge and they think but are not sure that he may have GVHD of the gut and bowel. There is talk about taking the samples they need tomorrow. Zac has also said his FIRST WORD and it was MUM yes MUM not dad it was MUM. Troy is happy but he is pushing the dad on him now and all he says back is MUM. I will let you know the results if it is GVHD oh and Zac has Staph infection again. Other than that he is ok and still smiling. That’s our boy.

Worst Day A Very Hard Day June 2008

13th June 2008!!! Today was a painfully long and so horrible it was a day I will never forgot. In my Journey here I have been blessed to meet some very lovely people. People who are caring and loving parents. I have met a wide range of parents who are here for all different reasons. In my time being at Randwick Sydney Children’s Hospital, I have been blessed to meet and make friends with a lady named Kristy. I was blessed to meet Kristy and her son Blake and her Partner Joe, they welcomed me into their lives and their daughters too. They share their stories with me and mine with them. Her daughter Skyla has been here for 8 months and was born with CDH. Skyla is the most beautiful little baby; this little girl has fought her way through life with a smile on her face. Skyla has a Blog so please read her blog, her story will shed some light on CDH and once you have read her story you will know you were blessed to know about Skyla. Beautiful Skyla became an ANGEL today. So fly little one fly high and remember little one you blessed everyone’s heart you meet. To Kristy and Joe, I’m sorry for your loss, I’m sorry that you have to feel this pain. No parent should have to do what you both have had to do, but I know you both are strong and will find your way through this. I know Skyla will live on through Kristy and Joe as she is in their heart, there love and their memories.
To everyone who reads this take 1 second out of your busy day and remember no matter how bad things are looking for you there is worse remember to love and hold your children that little bit more. Remember there are parents in this world that will do anything to have their children with them at home, not at hospital fighting a life threatening illness or worse having their child taken from them.
20th June 2008
Day Plus 64!!! Today was Skyla furenal, I was so sorry but I just could not make it there as Zac was sick and his heart rate is up and he seems to be getting sicker by the hour. So fingers cross he is okay. I just want to go home. My ward is on shut down Nora Virus is through my ward and a few of the children have it plus some of the nurses. So I cannot have visitors. My husband is not allowed to come in the ward, which I understand but I’m not happy our son is sick and he should be able to visit his son.

Another day in Sydney CHildren's Hospital

2nd June 2008
Day Plus 46!!! Zac is not taking to his tube feeds se wont suck the bottle and he is being sick on the nose tube feeds. We have try continues feeds not working and we have try the boluses feed every two hours but that was worse. What do you do? We are going to give him a break from the feeds for 2 or 3 days and see how he goes.
9th June 2008
Day Plus 53!!! I am so over being here. I want to go home. Zac is still not feeding we tried putting him back on the feeds but after a couple of hours he was back to being sick. Days here became so long, you don’t know half the time if it is day or night. Zac Platelets are good and his HB is great, Zac white cell count is going up every day, what more could you ask for.

The Overdose Zac has another Arrest

29th May 2008
Day Plus 42!!! At 4am this morning Zac had an arrest. I was feeling very scarred. Everything went a little wrong as Zac was arresting the nurse went to grab the bag and connect it to the oxygen but there was no high flow vale to connect to. So another nurses had to run and get the crash cart. Mean while they are working on Zac. A code blue was called and every doctor came running that was on and the ICU team was there too. Why this happened yes you guessed it he was overdosed while sort of. No one had overdosed him but he had so many drugs on board that it was too much for his body to cope with. Zac doctor came in to see him and me with the pain team and they were all very sorry it had happened. What had happened was they gave him his 11pm drugs than they gave his 1pm drugs at 11:30pm because he was needed them as Zac was having big time withdrawers. They then gave him is 1am drugs at 1 and gave 8 boluses of Fentanol between 1 and 4am in the morning there was just too many Narcotics in his body. Zac had a MRI done today and a LP. LP showed nothing which is good and the MRI was fine other than the fact he has fluid around the brain. The doctors said that they believe this is because of the steroids he is on and this can happen from this. Once you come off the steroids the fluid will go away. The doctor also said that they could not be 100% sure on this and they will do a follow MRI later on down the track with Zac to confirm all of this.

Back to the ward May 2008

22nd May 2008
Day Plus 35!!! What can I say my son is a fighter? We were moved back to the transplant ward today at 4pm. They have moved him to a room right next to the nurse’s desk. All the families and children have walking past waving at Zac and Clapping. When we walked into the ward a few nurses and parents all clapped and cheered for us being back. We are back and we are staying back too.
27th May 2008
Day Plus 40!!! Zac is requiring less oxygen now only on one litre. Go my boy. One good thing.

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Zac gets Sick

22nd and 23rd April 2008
Zac is sick temp of 40c. He looks so sick, poor little boy. He has been getting sicker and sicker by the minute. Zac has the platelet rash all over him the doctor here have said they have not quite seen it look this bad before. The rash has changed overnight it looks worse it looks like something from a horror film. Zac started to drop quite quickly today it was bit scarred. By 1pm Zac was rushed into ICU. The ICU doctor said he was going to put him on C-Pap and see how he went. They did a gas on him but it came back bad very bad and he was Tube and put on life support. Zac’s transplant doctor is away but the doctor who has been looking after him for the week showed us the two x-rays of his chest which were 2 hours apart. The first X-ray was clear one tiny little patch, but by the second one both were fill thick. Zac got some sort of blood infection and they say he is in a bad way and this is going to be fight for him. Zac can do this, I know he can.
26th April 2008
Day plus 9!!! Well you know there is going to be bad news when Zac Transplant doctor walks in when it’s her week off and it’s a Saturday. I was right telling you that feeling you get is not nice. Zac has gone into Acute Kidney Failure and it’s bad. Not only has his lungs fill one is starting to slowly collapse plus he also has VOD which is Veno-Occlusive disease, his liver is 9cm enlarge and still growing. So we have bad lungs Vod and Acute Kidney failure a blood infection and Zac is today positive 2500mls holding fluid. VOD is a potentially a serious liver problem whereby the vessels carrying blood through the liver becomes blocked. Zac is starting dialysis today they say it will be on for the next 2 to 3 days straight.
1st May 2008
Day Plus 14!!! Zac has come off dialysis today, he look like a million dollars so much better. Zac is doing better and his bloods are looking better too, hopefully he will not have to have dialysis again. Finger cross
2nd May 2008
Day Plus 15!!! Zac Potasmium which is known as (K) is very high and all his bloods to do with his kidneys are to, so back on the dialysis. Hopefully only for a day this time. Fingers cross again. Oh sorry Zac lungs are collapsing even more.
4th May 2008
Day Plus 17!!! Off the dialysis today and looking good. That’s my boy!!! Looks like Zac got Graft Versus Host Disease (GVHD). Which means a common complication of a transplant, caused by the donor’s immune cells killing the recipient’s healthy cells. There are two forms of GVHD Acute and Chronic. Acute GVHD occurs in the first 100 days after the transplant. Chronic GVHD develops more than 100 days after transplant. In Acute GVHD there is a grade system 1 to 4. One is being mild and four is being life threatening.
5th May 2008
Day Plus 18!!! Zac has had a bad night he has been Brady’s all night which is where you drop your heart rate and he was also dropping his oxygen where he was requiring more oxygen. This has been going on all day too. Zac has a staph infection too and a fungi infection. The liver is now 12cm enlarge. So we have two lungs fill of fluid one has collapsed there is the VOD of the liver and GVHD plus the Blood, Staph and fungi infection and acute kidney failure. I think that is enough now thanks.
6th May 2008
Day Plus 19!!! Zac has had another bad night and day he has arrested twice and been bagged more than 15 times. In one hour they bagged him 7 times, Zac is having these Brady’s where he is dropping the heart rate and oxygen. The heart rate gets down to the 50’s and his sats on his oxygen drops down to the 60’s. You have good days and bad days. This is a bad day. Back on dialysis today will be on it till tomorrow this is just a short one only on for 26 hours.
13th May 2008
Day Plus 26!!! Zac is doing a lot better. His lungs are starting to look better with each X-ray. I had a great day today WHY you ask? I got to have a nurse of Zac today, only a little one but it so special to hold your baby in your arms kiss him and cuddle him. He is still on the Ventilator but the doctors are starting to ween his requirement down, so hopefully he will off it soon in few days. Fingers cross people.
18th May 2008
Day Plus 31!!! I have asked the doctors to take Zac off the ventilator. Why you ask Zac is doing very well and he has been on it for 4 weeks now. My motto is let’s try worst comes to worse is they will have to put Zac back on the ventilator. So ICU agree, this afternoon we took out the tube. (The ICU said we had to do it now because Zac was costing them too much in electrically bills ha ha). Zac is coping very well still on oxygen but only 4 litres. Very happy only better days to come.

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Chemo and Transplant

8th April 2008.
Chemotherapy started today. Today is what we call day mins 9, this is what we call pre conditioning, he will have nine days of chemotherapy and day 0 is the Transplant. The Chemotherapy drugs will include Busulphan, Cycophosphamide, Fludarabine and Atgam. Plus all the drugs to kill off his marrow. Which are I can’t remember them all but here it goes Melphalan, Mesa, Cyclosporin, Mycopenolate, Methotrexate, Cotromazo and Ursodeoxycholic. Now there is more but I just can’t remember the other ones so I will let you know. Poor Zac was quite ill with the chemotherapy.

17th April 2008
TRANSPLANT DAY!!! The Transplant did not go so smoothly Zac blood presser was high so they had to keep stopping the transplant to give meds for the blood presser. The doctors say we will have to watch him carefully otherwise he might end up in ICU.
18th April 2008
Day plus ONE!!! Zac blood presser is still high but he is doing well. My boy is strong... Over the weekend the blood presser has still been high but not too bad the worst it got was 154 over 76. Okay I was a bit concern and so would have you been.
21st April 2008
Monday Plus day 4!!! Zac has had a bad night I have had no and I mean NO sleep. Plus I have said to my other Miracle boy James that I would take him on a bus. His first bus ride so I have to take him. Help me someone I have no energy. Of course Zac had a great day today it was like he was not even sick the night before that would be right. Troy (Zac dad) looked after him while I took James on a bus ride to East Gardens Shopping Centre. Let me tell you when you are tried that place is huge 4 or 5 levels of shop after shop. I could not wait to get back to the hospital and I never thought I’d be saying that. When I get back or I hear from everyone is Zac was fine he is great not sick nothing. Good News to my ears.

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.

Zac