RUGLESS BOYS WISKOTT ALDRICH SYNDROME

2012-01-21T19:11:00.000-08:00

22/01/2012
Day Plus +1383

Ok there is not much to say yet... WHY?
Well the urine test came back contaminated the bloods came back good the ultrasound show that is there no major bleeding or infection or blockage but they said that might not be right. The doctors said he is not empting his bladder right. They did a test where they took measurments of his bladder and then made him wee they then took more measurements but it came back showing that he did not empty enough out. The doctors think that there may be a problem there but not sure if it is infection or not. Zac now has been having accidents and weeing and doing very loose stools so maybe there might be some sort of infection there I am thinking.
The doctors have issued more tests to be done and to re do the same tests as last week..
The ultrasound doctor said that his kidneys don't look Great but look ok which is something too..
So fingers and toes crossed it all turns out to be nothing or maybe a infection or blockage..

2012-01-17T03:21:00.000-08:00

17/01/2012
Day Plus + 1378

I hope everyone had a lovely Christmas and a Great New Year..
I Hope everyone got there Christmas Wishes and enjoyed there time with there family...
We have added a new member to our family a Dog called Kobi a little Maltese x Shitzu Black and Brown he is James Birthday Gift which he is turning 9 years old on the 24th Jan 2012..
James is going into year 3 this year and he is growing up..

Ok Quick updated I will tell you more when I know..
Zac is passing blood through his urine and been sent off for tests awaiting the results as Zac has been in Acute Kidney Filure twice this could be again it could be a infection or a blockage but the ultrasound doctor could not see infection or blockage but can't say for sure till boods come back.. We are not telling my mother inlaw as she is sick in hospital and don't want to stress her out at this point of time till we need to know more...

Prayer its not the kidney for him please..
Will updated when I know more..

Bye Susan

Results are In!!!

2011-10-10T05:27:00.000-07:00

10th October 2011

DAY PLUS 1279

Zac assessment is in for the year, I really hate them in a way how they can just put it down in paper and walk away and leave the parent to just read it and deal with it. NICE!!! Not!!!
Zac results were not the worst and not the best that was for sure. Just to remind you last year Zac was 3 years old and the report came back with a processing disorder and his all over age for development was 21 months old in short. This year Zac is now 4 and his all over age in development is 2. It is good he has made a small improvement but the fact is last year here was 15 months behind and this year he is 2 years behind might not sound big but it is it shows the gap is getting bigger not smaller. The result show he has a processing disorder of the brain which they believe is Central Audio Processing Disorder C.A.P.D. and the results show he also has a Sensory Disorder and Hypervigilance Disorder plus Zac has a small stuttering speach problem and is deaf in one ear. Hypervigilance Disorder symptoms can lead to Post Traumatic Stress Disorder PTSD and is highly associated with many Anxiety disorders and Obsessive Compulsive Disorder OCD. I'm waiting on the psychiatrist to find out if he has OCD and a Aniety Disorder and PSTD as the O.T believes he has. So in a nut shell they have just added a few more labels and everyone that knows me knows I hate Labels on children so we will see. I have no idea what is going on other than he need more treatments and Zac is very behind. The Hypervigilance is a main reason he does not sleep so at least we know why he is not sleeping. It means he is waiting for threats and how to stop himself from being hurt from the threat, we think this may explain why he turns on the oven and stove and causes fires we believe he is doing this as he see me turning off and he may think it is on and wants to turn it off but turns it on instead. He is scared of loud noises and strangers and this is all linked with Hypervigilance Disorder.

We are also toilet training Zac and he is going ok in 2 months he has done wee's on the potty 5 times not bad at all, so the schools are trying to help too. Hopefully this time he will get it as we have been trying for over 12 months now.

Zac is still not eating dinner and just wants milk and they believe this is from the tube feeding he eats some breakfast some mornings and some lunch but just wants milk we are still going through 1.5 litres of milk a day and night last week we were creeping up to 2 litres so I pulled back to stop that. Funny he loves Chips and Lollies and chocolate LOL.

Zac is been quiet well since April 2 cold flu's one chest infection and a virus and a poo bug and one bad cough but all in all he has been ok.

Winter is always so bad but this year for Zac good this could be good sign.

James has also been a little ill to a little better 2 colds and 2 sore throat infections and 2 lymph node infections 2 small asthma attacks and one poo bug. Winter always is hard in my house glads it over that is for sure.

James is having lots of Highs and Lows so the doctors are running some test and waiting for the results to come back, which I will update as soon as I know.

James Aspergers is the ok and under control but he has been having a few melt downs getting up set over nothing but something to him having big melt downs. i have been rang 2 twice in 1 week to pick him from school because the teacher could not deal with his melt down. He took a week off school because we just could not get him out of bed he would just sleep all day and get upset. To be honest it is hard sometimes and I just wish I had all the answers to help him and a magic wand would be good too.

James school work is still behind but we have a tutor for him now every Wednesday and I know he love her which is great I was so scared he would not like her and we would have to search again. I am still the most proudest mummy though he just tries which is all I ask and it makes me smile so big. I don't care if he is not going to be a doctor just as long as he is happy is all I want.

James was in a school Musical he did eye of the tiger and he had changed his mind he was not doing it and the night before he said he would and he was GREAT and you could see he had fun. No big part but hay my boy does not need a big part he plays the biggest role to me and my husband.

James is still getting leg pain and aches and the doctors believe it has to be something to do with his transplant something about the bone marrow re-generating itself can cause really bad pain but the doctors are looking into it to get some concrete answers.

James is doing Karate and is on Yellow Belt doing very well and enjoying it on and off he has his weeks like any kid does. I love going to watch him do his thing you should have been his face when he passed his yellow belt and most weeks he gets student of the week too, so it is not just mummy speaking he is doing quiet well.

Please Keep in your Prayers and Thoughts and Support to my WAS Friends that have been through transplant and going through the side effects that are having Transplant and have had transplant they to all need your support. Thinking of you Bee and Max and Lukas and Lisa and Paige and Caleb and to EVERYONE else the list is long and Kisses and Hugs to everyone sorry to anyone i forgot to mention it really late and I'm so tried. Remember Medical Miracles don't always happen

To my Dear friends Sussan and Warren and your beautiful son Brendan. Brendan you are always in our hearts and will be greatly missed everyone who got to meet you will be a better person for knowing you forever and always Loved 27.03.1996 to the 17.09.2004.

Please remember to Hold and Hug your Children and spend that extra 5 minutes with them they are special and need you. They are your Miracle to your life.

Remember to Smile People because there is so much worst out there and even if you think you have hit rock bottom you can only go up now so it can't be that bad. There is always someone worse off then you. Smile at the person you walk past because maybe they just need it, i know i do sometimes and sometimes a good smile is what can get you through the day to pass the nightmares at night.

Cheers and Take Care

Susanxxx

2011-04-14T05:00:00.000-07:00

14Th April 2011
DAY PLUS +1100

Lets see its been a full on couple of months!!! we will start with James..

James...
James has had two addmission into hospital with some sort of virus that effects the lymph Nodes in his tummy his liver was a little enlarge and over the last nine months his eating has been poor to not eating. In the last 5 to 6 months he lost 5kg he is has now gained half kilo and sitting inbetween 19 to 20kg and he is 8 years old... The doctors have said that if he drops another one to two kilo they will stick a nose tube down and admin him to force feed him. That has scared him to death the poor little boy and he is trying so hard to eat.

The School held a meeting about all his time off already this year it makes no differents that I have doctors letters stating that he had a bone marrow transplant and was born premmy and he has Med problems nope not one bit.. The school also knock him back for a teachers aid even though James has Aspergers and is IM too but hay we have had 3 doctors test James for Aspergers and IM and all say he has it the school even did the test last year but they have said this year we think he is fine and he is a above grade student and does not need a teachers aid and we dont agree with IM or Aspergers anymore. I felt like a some dumb ass mum walking out of the meeting but one week later the tests are back and all marking for this term are in and the school called me in for another meeting this time to tell me James is so far behind that they are going to have to go back to year one work with him and if he does not get that then back to kindergarden work. There was no sorry to me only that it was only now they could see the problem and OH he needs a teachers aid and a aid for his socialing as he does not social with other kids Bloody School and there councilor has tested James and believes and backs me that he has 100% Aspergers and is IM and Maybe we want to look at a different school for him... So I rang the ED Deptarment on the School and they are BIG BIG BIG trouble Oh yeah Love It!!! You see I should have only needed the one result from the first doctor that SIGNED a Legal Report stating my child has Aspergers and is IM and that should have been Heaps to get him a teachers AID... 3 Years later and I finally am getting some bloody help now I have to fill out all the paperwork again and re apply and because the year has started I may have to wait awhile for a teachers aid to pass for the funding...
James has been having the worse melt downs and to be truth ful I'm so over it so tried of the outbursts it wears me out somenight. His Asthma has been playing up in 3 months he has had 2 attacks and 3 start up little ones the other night I thought we would have to call the hospital and get him in there...
James has started a mathletic and spelldrome computer program for him with his learning problems too.

Zac
Were to start!!! Hmmm Thinking.. ok so his last lot of bloods showed his levels are down in vitiams and his platelets were a little down but ok 150 still fine though. His tests have come back this year showing no improvement in his delayments so he is still highly Globe Deleveopment Delayed but I dont agree I see the improvement stuff them I say.. He is having early intervention now 2 days a weeks for 2 hours a day and the speach is worried about him and has got him in DADHC which is age and disability services as a Urgent so hopefully we will start to get some extra help. They are worried about his speach and undestanding and he does not sleep and his bad bahaviour and she feels he is a little Obsessive Compulsive in some things not many though I dont Believe the obsessive Compulsive I only see that in maybe one or two things not a everyday thing.. Who Knows... Zac got another cold and another chest infection it last 5 weeks to clear and he still has little there but nearly all gone now
Zac is still having around 1 to 2 litres of milk a day and not eating much food but hay at least he is having milk they say...

Well i hope everyone is well and happy and doing Good
Till Next time
See Ya
Susan

2011-01-12T16:32:00.000-08:00

13th January 2011
Day Plus +1008

I hope everyone had a great christmas and good New Year.

Zac Bloods are back it shows a Vitamin Deficiency and Vitamin C Deficiency we have place him on a Vitamin Deit to see if we can change this and we will re do bloods in 4 weeks to see if there is change. If not any change not sure what they will do still in talks as this could start to effect his liver again and cause some more problems. Zac Skin has been flaring up bad again ...It just never stops.

Zac starts back at early intervenation in Feb 2011 too very happy for him to be getting some good help.. Zac is still having speech and ot and physiotherapy too. Zac behaviour is not so good he threw a a steak knife at his couz the other day and laughed he has no understanding of good and bad witch makes things hard.. Zac has been pretty much the same still running nose and cough due for another lung Xray in Feb 2011. Zac sleeping is no better if not worse he is now going to bed around 7pm back up by 10pm and not going back to sleep till 3am to 5am back up by 6.30 to 7.30am I just wish he would sleep. The doctors are talking about putting him on drugs to calm him down but I'm not too sure about this as they have enough drugs. Zac Drugs intake in down to 5 Drugs now Woo Woo...

James is not growing and the doctors are getting worried about his growth so they are letting him go till Feb 2011. If he has not gained weight he will have to start growth hormone shoots, so here hoping he grows and puts weight on.... James is still getting bone pain but they dont know totally why other than they think it has to do with the bone marrow growth.. He has being having a few ups and downs of late when will they come up with a magic pill with Aspergers.. He gets a teachers Aid this year YES so happy and a Tutor to help him. So So So Happy about this.

On another note we are thinking and sending all our love to our Aussies QLD's People who are caught in the Floods.. To All my Family and Friends there be safe look after yourselfs we can ReBuild anything but we cant Rebuild YOU so be Safe...

I Hope Jacob's Family does not mine but I'm sending out to you and your family a big Hug Lots of Love and prayering that Little Jacob is back on this feet in No Time and you are back to Normal Life again.... You can see Jacobs Journey on my Blog..

Till Next Time
Take Care Everyone and Be Safe... xxx

2010-11-29T04:14:00.000-08:00

29/11/2010
Day Plus +963

Ok I know it has been awhile I'm slack but heaps been happening.
Zac started child care for couple of hours a week and going well other than the crying everytime I leave I hate that part but LOVE the peace and quiet.
Zac speech is getting better and he is saying more words now which I just love to hear.
Zac has had a few colds and bugs so been fighting them off.
Zac eating is not so good he has stopped eating dinner and is going off breakfast but he loves his milk the doctor is not happy because he is drinking around 1 litre to 1 and 1/2 litres a day of milk and this can cause problems with his iron levels and something else in the blood when your having to much milk and not enough food. So today he was sent off for bloods to test all levels and how they are working. Zac had his CT Scan he ended up on oxygen for a few hours and dropped his heart rate twice no biggie so that was good for once. The results are in and the doctor says There is a small area where his Lung has Partialy collapse this will not heal. The area is small about three fingers wide and across. This area is not a major concern at this point which is soooo good to hear and what they would do for him he is already happening anyways he is on 2 puffers sometime steriods. The doctor said he will need regular scans to montior his lung so he does not get worse. This explains why Zac has a cough and cant get rid of it. If his cough, asthma gets worse or he starts with breathing issue the doctor will issue a emg scan. If the area gets worse bigger this can cause a few Complications or if it gets bad this can be life-threatening. There is a weakness in his lungs so he is more prome to getting colds and chest infections which could add more presser on his lungs which could lead to bigger problems on the lungs.. But the Doctors said his lungs are looking ok other than this small collapse part.
The doctors are going to see James in Feb and we are going to talk about if we should start treatment on James as he is not growing nor really putting weight on he only weighs 17kgs and is 8 in Jan... So fingers and toes cross James grows and Zac lungs stay the same and you know what I really do think Zac will be fine and nothing will happen because I think enough has happened in this family and it is time for some good to start happening..
Zac is still having speech and OT and Physico and early intervention as will start next year more classes of learning for him so hopefully he maybe may get to go to a normal school oh I hope so.
James is getting a teachers aids and a special tutor for next year to help him too.
Poor James is having problems in class and making Friends I wish i could take the aspergers away and make his life easier he gets so upset and cries because he has no friends to play with but he does not play with anyone at school so why are they going to come over to our house. It breaks my heart to see him like this he wants Friends soooo bad it is not funny he just does not know what to do. He did have one boy come over for a play but he does not want to be friends with James now after his visit and I thought it was going so well but James said he wont play at lunch time and When James rang him up he was very rude and hung up on James and poor little James just cried his heart out the next day the child told him not to call him or speek to him he only want to see what James house was like and what we had little SHIT of a Kid... There is another kid at school that is picking on James and twisting his arm back smashing his lunch and swearing at him he is the worse child at school and I wish they would get rid of him I dont care that childs needs to be out of way of hurting children.
Untill next time Be good Smile and Laugh
Cheers Susan

It is all happening here so Bring on Christmas and a Great New Year i Say...
When I get Zac Bloods back I will let you know and I will update on James when I see the doctor.

2010-05-10T04:26:00.000-07:00

10/05/2010
PLUS +760

Hi Everyone,

We are still waiting on the CT Scan it just arrive in the hospital but waiting for it to be installed.
No News is Good News though..
James went in his cross country and came 15th out of 70 Boys so proud of him.
James has started back at OT and he is still having problems at school so we are thinking about moving schools next year to a school where there are students there that are totally normal and healthy but there are students there that stuffer learning problems and have Aspergers to like James. We are just not sure what to do any idea I would love to hear them.
Zac is still having mass behaviours problems he just does not understand and when you try to stop him he goes apes, we are waiting for his results on his assessment on his development..
Poor Zac ended up with 8 days of the runs he was so sick he was pooing every 5 Min's for a while as much as I don't like drugs it is a pity there is no drug out there to help little ones to stop them going to the toilet so much.
After Two Bone Marrow Transplant with my boys you think I could keep up but I was so tried and run down it wore me out..
Till Next Time Keep Smiling
Cheers

2010-04-26T05:19:00.000-07:00

26/04/2010
Plus +746

Hi Everyone..

Stilling waiting for this CT Scan on his lungs.. Had a few issue last week Zac got a little cold and he ended up sick with both Lungs full put back on more drugs..
Had to take him to the GP Doctor who was upset because he did notknow what to give him because of his lungs.. What a week it nevers end nearly ended up in hospital so greatful we didn't.

Getting a little worried the doctors are all worried about his lungs they keep talking about this Fibrosis of the Lungs but not sure had a look on the internet, I hope it is not it sounds not very good .. So fingers and toes cross they are wrong just wish they would do this scan and hurry up..

Zac had another bad week he smashed all his meds out of the fridge and screamed when I tryed to take him away and tryed to fight me because I was taking him away it was so upsetting and when I tryed to tell him NO and he just laughed and clapped his hands and blew kisses.. He tryed to bite me and head butt me because I was taking him away from the fridge it was so bad and so so upsetting too.. What Kid blows kisses and clappes hands yelling Yah when he is in trouble..
When I know more about the tests I will let you know..
Bye for Now.

Happy Easter...

2010-04-03T02:28:00.000-07:00

DAY PLUS + 723
03/04/2010

Hi Everyone,

Heaps has been happening Zac Lungs not the best he is having a Ct Scan as they want to see what is happening, he has had a cough for over 12 months and can't get rid of it. They said his lungs are NOT normal in shape or look he has scare tissue and he has from ICU Life support Lung issues and Fibrosis of the Lungs which we thought this would fix it self but looks like it is a lot worse.. Fingers Cross Please The doctors are worried so I'm hoping they are wrong.
We have also been told it looks like he has Brain Damage too and behind he nearly 3 now and they score him arouond 12 to 15 months..
I will let you know more in couple of weeks...
Please Pray for him..
Sending my Love and Prayers to the boys in transplant now...

See Ya till next time..
BE GOOD EVERYONE...

2009-11-25T22:14:00.000-08:00

26/11/2009
Day Plus 595

Hi Everyone,

It has been a while. Umm where to start, heaps has been happening but the days go so quickly sorry for not updating in awhile.
Zac had another operation yestarday they removed his Port and feeding tube and checked his ears out. The operation went ok but he had the start of two Cardic Arrests one in the operation and the other in recovery he is ok. The operation went well other than that. We are off to Sydney again soon next year to see some more doctors Zac hearing is no better and they are not sure if messages are sending and receving to his brian and ear and that is why he is not speaking or if he needs a cocheal. The left does not hear at all and it is nerve damage but the right shows it works so he should speak so they are starting to think it may not work very well at all. We are learning sign with him which he is not doing very well but it takes time. Zac keeps getting sick he has had lungs infections cold and colds and more lung infections and the doctors are not sure why so more tests to come to see what his immune system is doing fingers and toes cross it comes back nothing or nothing bad... Zac may have another operation in 4 weeks if this one did not work well as they removed the feeding tube and hope the hole will close if not he the doctor said Zac will have to have a bigger operation to close the hole which is major tummy operation so fingers cross his hole closes well I do not need anymore operations this year and NO MORE ARRESTS how much can the heart take...
James is still having problems he has two lung infection and ear infection and throat infection and he has had a few down months we are trying hard to get on top of his aspergers but it is hard sometimes to parent him as in when he is playing up is he being normal or not..
Other than that all is sort of NORMAL well for this family anyway.
I hope everyone is doing well I will back in touch soon.
Till Than Everyone be Safe SMILE and Laugh ....
See Ya
Susan

2009-08-18T04:10:00.000-07:00

Tuesday 18th August 2009
Plus Day 494

Hello Everyone,
Just a quick note, Zac will be having his GFR on Monday so we find out how well his kidneys are working Fingers Cross.. Still Tube feed but trying to get him off it so fingers cross again.. Zac has a appointment in Sept with the hearing doctor so we will find out what they are going too do I begged NO cochlear just an aid pleaseeeee...
James results are back on his IQ and development test well it is Asperger's ( which is a form of autism ) who would have thought oh well just throw another one at me.. James is ok he can talk and live a normal live just needs help that is all. Back at John Hunter next week for appointments so don't want too, when does it all just stop and life get NORMAL. Just Over it all..
Very Important DAVID McNALLY has now reached 3 years post transplant, Party for David I think ... We are all thinking of you David and we hope that your GVHD clears up soon and you can be pain free and free from all the drugs.

I will let you know the results of Zac's GFR as soon as I get them.. Thanks to everyone who has been sending me emails very lovely of you...
Till Next Time "Smile" ...
Susan

2009-07-13T05:39:00.000-07:00

Monday 13th July 2009
Day Plus 458

Hello Everyone.. I have had a packed month I had a baby shower for my sister inlaw at my house and my other sister inlaw also had a baby shower two sisters pregnant together and both having boys and they are three days apart, I can only wish them the best on a safe and healthly babys boys... I also started a part time job just on saturday mornings, don't know how it will go or if it will last but it gets me out of the house and earns a extra bit of pocket money. Which is always welcome in my house. I have had the flu for three weeks and was tested for whooping cough it came back that I did not but I can't help think that I may have as they still placed me on the drugs clarithromycin which treats whooping cough and with in three days a was better and my cough was almost gone. We all have been sick with a bug aswell. I was so sick and both James and Zac had it too that Troy had to come home from work only to see he started to get sick 2 hours later.
We got an letter from the school the other day we thought James was in trouble but he was been awarded for doing so well in school and he is only just started this year Wow. I'm so proud of him my little shinning star.
Zac has been ok still tube feed but he can't seem to knock this cold he has had it for about 2 months on and off with a cough too. Zac is walking now and walking everywhere it is so good to see but he is still not talking any more words only Mum Dad Nan and Bub but Troy believes he said Ball on the weekend but I have no heard it and Troy can't him to say it again oh well it will come. Any idea on teaching Zac to talk would be helpful my friends anything, but I think he will not talk much till they help with his hearing I wish my doctor would pull his finger out and hurry up with an appointment.
I will keep you updated on hiis hearing and feeding again soon till them
BYE and be safe...
Susan

2009-05-29T07:48:00.000-07:00

Saturday 30th May 2009
Day Plus 414...

Been awhile everyone...
Time fly's.. It has been a hard month and no Zac is ok I think it has just sunk in I'm home and everything I went through. I have been visiting friends and catching up but I find that hard too there kids are well there kids are doing everthing they should be doing, but don't get me wrong I'm very proud of my boys but I wish sometimes I could just be NORMAL.. and have the normal life. Sometimes I just sit and stare and think what did I do that was so wrong to put my kids through this. Maybe I did nothing or maybe I did but I have to deal with cards I was dealt with. So Zac had his tests done on his development you know on everything and he came back between a 6 to 10 month old . Not bad for a child who spent so much time hospital. Zac is walking holding onto things he wont let go he has been doing it for about 4 weeks now but he shows no sigh in letting go yet..
A very big congrats to Kristy on her baby boy Jai he is so cute..
James loves school hmm wonder when that part will change not looking foward to the teenage years lucky I still have abit to go LOL..
Zac is still tube feeding we took him off it for a couple of weeks but he lost 2 kilos so he is back on tube feeds again gee wish I could lose 2 kilos over 2 weeks now I will take that diet LOL...
Till next time I hope everyone is well and Happy...
Susan

2009-03-03T04:17:00.000-08:00

Day Plus 326
03.03.2009

Hi Everyone,
I know I'm a slacker... I have been so busy and would not believe how time fly's. Well first I want to thank Aimee so much for anyone who does not know Aimee she has a beautiful son David who also had Wiskott Aldrich and Aimee you are always there for me, when I need you, so thank you from the bottom of my heart.
First James started school this year my boy is all grown up...(sad) but happy too he he he...
Zac hearing test came back looks like he is deaf in his left ear but right is ok with a tiny loss. Zac is due for his MRI this month 31st and while he is having this they will look at his ears too.
Zac bloods have been all over the place with him dropping his sugar levels who knows why any thoughts on why let me know please.
Zac is crawling now and his talking is no better still mum and dad but who can complain, best part is that he said mum first... he he he...
not much to say I'm waiting on a whole heap of test to still come so fingers cross.
ps everyone my blog has a no copy right so please don't use my photo's or info for any papers or mags or anything else not being rude only that we have had a mag company use this blog and copy my blog which has now printed it all over Australia and New Zealand and there is incorrect info and photos that should not have been used which has coursed a lot of problems here.Please I'm not trying to sound rude, so noone take it the wrong way..

Cheers Everyone I will post again this month once I know more
Susan

2009-01-07T22:49:00.000-08:00

Day Plus 272
8/01/2009

Happy New Year Everyone!!! I hope everyone had a lovely christmas and a safe new year... Here's to a healthy Safe New Year!!! Well I have been home now for 6 weeks and loving it, it was so nice to be home for christmas Zac had a great day and James was so tried by lunch he fell alseep for a while... James birthday is comming up and i feel for him as i can't have party for him because of Zac hopefuly soon Zac will be out and about with everyone. James also starts SCHOOL this year oh so sad my baby is growing up but so happy too. My doctor is away on holidays at the moment and I wish he was back, Zac bloods have been up and down he keeps dropping his platelets and his urea has been climbing up. Zac blood pressure is still high and to top off that they found a lump a growth in Zac ear and they have no idea what it is, I'm just staying cool and hoping it is nothing FINGERS CROSS. I can't say on Zac about starting steriods or not as one my doctor is away and two the poo has changed into a green paste. Lovely !!! Zac is having MRI in March to check for damage as his last MRI showed fluid around the brain and shrinkage of the brain. That's it for me now have a good one everyone till next time Have a safe one BYE....

James Last Day at Preschool

Zac

Smiling Zac Zac

Me with Bronte

Margaret Troys Mum (NANA) and James

James and Me Hi Five Zac

Do not copy any info or photo's not to be used by anyone no copying anything from my blog

BEING HOME WITH MY BOYS

2008-12-10T18:01:00.000-08:00

11th December 2008
Day Plus 244

Hi Everyone,

Well my doctor is saying he wants to keep his head in the sand a bit longer with puting Zac back on steriods. I have no idea why and it is driving me crazy as I don't want him back on steriods but I also hate seeing him in pain, what can you do...
I see my doctor this week plus a skin prof aswell, so I will update you on what he has to say..
I have been a little worried about Zac, as he has had an ear infection and his skin is very bad. I just hope we are not going to end back in hospital for christmas, it gets so worring when they get sick.

Zac's bloods were ok this week which was nice to see but his kidneys are still up and Liver too so fingers cross they will come down.
Zac is booked in for a hearing test where they are going to put him to sleep as they think his left ear does not work at all, he is also due for his next MRI and GFR plus he is also due for his Lung test too. Well we know what hospital are like so I think it well be some time next year.

Do not copy any info or photos not to be used by anyone at anytime no copying..

2008-12-02T02:01:00.000-08:00

Day Plus 235
2nd Dec 2008

Hi There everyone I'm HOME HOME HOME HOME HOME HOME HOME.....
I came home on Day Plus 218 Tuesday the 18th of November 2008....
I have spent 39 weeks and 5 days in hospital all up...

Zac is ok he is still on 10 different drug including blood pressure drugs and sorry been so busy that why no blogs for a while. Zac is getting worse by the day though it looks like his GVHD of the bowel so the doctors are going to talk to me on thursday so looks like back on the steriods. Great!!!
Being home is so nice, it is like coming to a new house. James loves having me home, I didn't tell him I just turned up he was so happy he thought I was a dream. James asked his Aunty if I was a dream... poor little boy...

Zac has still got his button in his tummy and feed 18 hourly but he has been having tiny bits of food and took his very first slip of drink last week but only done it once more than that. But it is bit by bit day by day.

Zac has settled down being home, which I was a bit worried about but nothing to worry about, he is now rolling on his tummy now but can't roll back yet he is also straighting his legs a bit now so when I pick him up he will sometimes only sometimes put his legs straight down.

Bye Bye Now will update you on GVHD...

ZAC NEXT STEPS

2008-11-05T00:11:00.000-08:00

5th November 2008
Day Plus 205

Hi Everyone.

Well Zac had his Operation Today for the feeding Button, I think this will take a bit to get use too thats for sure. It went well anyway it took a little longer than it should but he is okay very sore. Poor little boy, lost count on how many operations he has had now getting over it. They also did a bowel biospy as they are starting to think maybe gvhd in the bowel. Well some of the doctors think it is some are not sure, so we well see. Can't believe it is Day 205+ dont time fly when your not having a ball. It has been longer that 205 anyway as I was here since Feb 2008 so I'm so over it. Well thats my update only a quick update I will let you know when his results are back.
If you get 5 seconds than do me a Fav my beautiful cous just got Married Congrates to her and her husband. They did not have a honeymoon and she has been entred into a comp to win a Honeymoon so PLEASE VOTE for her to win this please go to http://brideoftheyear.bridetobe.com.au/ please vote for NICOLE HOLFMAN you can vote once every 24 hours. Thanks everyone for your support.
I have permission of Nicole to use her name and veiw her photo's but no photo's of mine or hers are to be used for personal use there is a no copying on this blog.Do not copy my info or photo's for any reason or for any use.

DAY +197 Life in hospital

2008-10-29T04:36:00.000-07:00

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...

ZAC IS BACK!!!

2008-10-11T05:17:00.000-07:00

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.

You have no right to copy any of my info or photo's no copying not to be used by anyone for any reason thank you no copying

Life is getting Better

2008-09-29T04:52:00.000-07:00

Hi Everyone,

Day Plus 165
29th September 2008

Well Its been a month sorry. So much has happened around here, where to start. First Zac has been on gate leave which is I can stay at Rondal Mac House with Zac so I did that ok and that was fun then on Saturday which was the 27th Which is ZAC's BIRTHDAY my docotor discharged Zac from the Hospital so I'm still at Rondal House and I go up to the Hospital everyday for Bloods looks like I might be home in a week or two.. I can't wait 8 months in hospital is long enough Zac is on 13 different type of meds but I can deal with that.
Zac Birthday was great both his aunty's came and Uncles too his two nana's and a great Aunty it was great my nehews were there too but they could not come near Zac which was a bit sad but they understood and stay outside playing, Such good boys they were. The other nana and pop came today oh Zac has three Nana's and two Pops and no they are not great. What can I say so many people love him. He got lots of Elmo stuff and he loved it.
Zac is still tube feed he will not eat but I'm trying everyday and he still has a damaged liver and kidneys and still on three types of high blood presser meds, but we will get there. I just can't wait to go home and I will deal with what ever happens from there. The OT department has had legs wraps with weights being made up for Zac's legs as he wont use them and can't stand and use them straight.
Please everyone our prayers goes out to Krystal and he beautiful boy that they get to go home soon too.

Were Out of ICU

2008-08-26T05:21:00.000-07:00

***This is Chole our Beautiful Stunning Girl***

Day Plus 131

Hi there everyone,
Well sorry I know it’s been a few weeks but its been hard. We are OUT of ICU yes he has come off the ventilor yes that’s right I will say it again he is off the ventilor. We left ICU on the 12th of August 2008, 6 and half weeks we spent in ICU. This makes three admissions to ICU in 6 months, and I have been here for 6 months I want to go home. I’m so over living in the hospital very over it. Since we have been out of ICU they moved us to 3 west in a single room of course, but it is a infection ward and I hate being there as there is that chance Zac may pick something, but we have no choice as when he was in ICU there was another baby there who got chicken pox’s and even though she was in her own room and he was in his own room he has to wait the period to say he won’t get it. Zac liver is still not great there is GVHD and he can take anything in his tummy as soon as even a meds goes down the tube he cries and then brings it back up. Not much to say about his lungs they have not improved as yet I say they might not. Zac is still on meds for his high blood presser and for his heart, so finger cross he gets better there.
I have been a bit sick with a cold so I have been away from Zac for 5 days. Thanks to my family for stepping in and coming to the hospital to look after him I think I would have been a wreck. My poor family copped it though, Zac was crying for me as he has never been away from me and he also is teething and he also has a Staph Infection again this is like the 5th time and he also has a strep infection in his blood, great. I walked back in today and you should have seen Zac he just stared at me for couple of mins but as soon as I put the cot down and lent over to kiss him, he had the biggest smile on his face I picked him up and he just layed in my arms without moving just starring and smiling. Troy has had his first ever stay in hospital with Zac as when I was sick he stayed Friday and Saturday and to top it off Zac was restless and wanting me and has reacted to the meds he is on and has some big time watery poo’s. I don’t think Troy knew what hit but I’m pleased to say he coped well and will be staying more often now. I think it was an eye opener, don’t get him wrong he is normally looking after James our 5 year old.
We put James wish in as well you should see his wish, my boy want a new bedroom nothing to big. “LOL” He want bunk beds but with a double under the top bunk matching cupboard and drawers and bedside table. He wants shelfing for his room and a corner desk a underwater camera and a IPod with an iPod player speakers, a TV and Video and DVD player plus the NEW WII with games list keeps going he want a tickets to the Easter show with bags and rides there more. The wish lady laughed and found that it was cute, at least my boy is choosing things he wants not a holiday that last for what 5 days and everyone goes. This is what he wants so good on him I say.
My friend I made here her beautiful daughter is going in for a Bone Marrow Transplant, so please everyone say prayer she should be in within the next 5 weeks. Oh my she is unreal full of cheek but only good cheek and I don’t think there is no one on this earth that could say she is not beautiful, so look out mum and dad when she starts dating in 10 years. Bless you Chole everyone wishes you nothing but the best.
Kristy went to a Sex and City Party check her blog, they were drinking some or two. LOL

Please note I have permission from Chole mum to show these photo's of her and her story but please note that I have a NO COpy right on this blog do not copy any info or photo's for any reason or any use no copy.

THE RESULTS

2008-07-31T01:42:00.000-07:00

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.

Do not Copy my photo's Not to be used or copy for any reason or any use do not copy.

The Operation Day

2008-07-28T05:47:00.000-07:00

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

2008-07-26T00:56:00.000-07:00

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

2008-07-11T06:05:00.000-07:00

Do not copy my photo

Zac Sick June 2008

2008-07-05T22:15:00.000-07:00

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

2008-07-05T22:13:00.000-07:00

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

2008-07-05T22:12:00.000-07:00

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

2008-07-05T22:11:00.000-07:00

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

2008-07-05T22:08:00.000-07:00

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.

Do not copy any of my info or photo's Not to be used by anyone for any use

Zac gets Sick

2008-07-05T22:04:00.000-07:00

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.

Do not copy or use any of my info or photo's NO COPYING this is my info and right.

Chemo and Transplant

2008-07-05T22:01:00.000-07:00

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

2008-07-05T21:58:00.000-07:00

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

2008-07-05T21:56:00.001-07:00