Gate Pass!!!

Brody and i got a couple hours gate pass from the hospital today, so we could spend some time with Luke before he left tomorrow to go back to Queensland. Its funny how Brody acts different in certain environments, as Brody has not cuddled Luke at the hospital but as soon as we got to Grandma's he raced up to Luke and gave him a big cuddle.

We had a nice time, but the couple of hours just went to quick. Grandma and Grandpa cook a beautiful bake dinner for us which Brody had two serves. Luke and Brody played some play station and watched some TV.

We got back to the hospital and Brody fell fast asleep. The nurse gave him his platelet transfusion and did all the routine checks. He hasn't yet got a high temp, so cross your fingers its starting to go. He still has his running nose and cough and gets very tired.

Tomorrow Brody and I have a day full of craft activities to do, which will be lots of fun as the play therapist gave us lots of didn't craft stuff to do.

Still don't know much but i know that if Brody doesn't get over this soon, we will be in here till transplant with no break and they might even postpone transplant for a while. So not to happy about that as wanting Brody to have some sort of normal life before we are in isolation, with no visitors and no normal day to day activities.

Not so good news today!!!!

After waiting all day with no food or drink, Brody had his CT scan at 3.30pm. It was a hard time trying to keep his mind off food. As all he wanted was his favourite pizza and Garlic bread.

We also had so many doctors and nurses, teachers and play therapists coming in organizing appointments with me and doing their normal checks, which this made Brody climb the walls.

No news from the EEG, maybe next week. Brody's bloods were low, so is now having a blood transfusion.

After the CT scan, we got back to our room, where Grandma, Grandpa and Luke were waiting with pizza and Garlic bread, Yummy, Yummy.... Brody was so happy.

Our main doctor that we are under and only met once come in with another doctor. I got told that we will only see our main doctor if there is something wrong. So you could imagine what was going through my head seeing her in our room.

The Bad news is that Brody has some type of Pneumonia. They have started him on new meds and will do another CT scan next week, if meds don't work he will have to have a needle into his lung to get some of the bug out so they can tell if its Fungal or bacteria. Its so not fair that we have to now fight this and it might delay the transplant. I have been so careful with him but like others i have seen, they can catch it from the hospital. So from now till after the transplant i am going to be more careful for Brody's sake. I am glad i got my flue shot as then i know i dint cause this. I am very upset at the moment as we have to battle yet another thing but i know Brody is such a super hero and will fight all the way.

Very tired!!!

5.30am the alarm is ringing in my ear and i didn't want to get up but i knew i had to get Brody awake so then he would be able to go to sleep at 11.00am for EEG. I got out and got Brody up watching Tv and got his breakfast for him. I then did Brody's activities with him to tire him out mentally as well.

The nurses come around to give him something little to help him sleep, which he hated and hurt his mouth sores. But every thing was well worth it as I got Brody to sleep very quickly (First time ever). He had his EEG and then come back to the room and slept for over 2 hours. I also tried to have a sleep, but during the day it is alot harder as there is more noises. Should fine out something from the EEG tomorrow, which will be interesting if his seizure disorder has turn to epilepsy as they have told me in the past that it would.

Brody's temps are not coming so much but still peaks high once a day. His nose runs like a tap and still has his cough. They are going to to yet another CT scan of his chest, head and tummy tomorrow. He will be but under completely for that one.

I have been very emotional lately as i am finding every thing getting just to hard. Its alot of work to look after a child with Autism in hospital 24/7 and then have wonder and stress how i am going to answer the next debt collector on the phone. I have so much going on in my head that i cant let out and i have to just keep pulling a fake smile, it is sending me crazy. Also worrying about what will happen and just not knowing what is going on, as they never tell you much and then they change their minds all the time. It is so frustrating.............. Grrrrrr.........

Busy Day!!

This morning we had Autism behaviour intervention come and help Brody get used to things he will need to have before transplant. We are also meeting with the play therapists from the hospital to help us too, as ABI cant be there when he is in isolation. Which is looking to be up to 8 weeks or more, depending how Brody goes.

The music therapist also come in and did some great jamming with Brody, as his favourite song is We will, We will Rock You!! He had lots of fun!

Brody also had surprise mouth swob's and visits every two hours from the nurses, to check his routine temps and blood pressure.

Grandma and Grandpa brought Luke in for his tests, which is personal business between doctor and Luke. As he is now a adult and can make his own decisions. So all i can tell you is he was gone for over 2 hours and had a blood test. He will have to come down again at the end of the month for more tests and then for transplant mid June, Hopefully!!!

Then we had a surprise visit from the brain doctor as they have booked Brody in for a EEG tomorrow, because of his seizure disorder and they want to check him out before transplant. So I have to not let him sleep so much tonight, so he is tired for the test, as he needs to be asleep. Grrrrrr....

Nurse then come in at 3.45pm and told us we had a appointment at the eye clinic for Brody at 4.10pm, WT! we then sat at the clinic for 2 hours waiting. The doctor had a hard time as Brody was tired and sore by this time as he had no day sleep. Brody also found it hard as he couldn't understand what the doctor really wanted him to do. I found it hard to prepare him as i dint know what the doctor wanted either, even though we had been pretening with a torch and looking in his eyes.

We got back to the room at 6.oopm, we are now both tired and buggered!!! Poor Brody had to be so brave today with all the new tests he has never had and new doctors coming in. Yes other children go through this but imagine beaning in Brody's shoes when you have Autism and see things differently then other children would. This would be so scary for him!!!

Blood Every where!!!!

Today was very eventful, this morning we had Chris from ABI do his magic, as we worked on Brody the brave stuff and school work.
Matt the nurse and i took Brody down to do his lung test. Brody was excellent, as he had to get his 10 points to receive his reward. Which he wanted a funny face biscuit. He had to do little blows and big blows into a machine, which then blow out candles on a computer screen. His reading wasn't good, but it was his first time and they say that's what happens the first time.

Then Brody was on his bed when one of his lines came out and blood just went every where, Brody freaked and then fell off the bed hitting his head and back. His platelet level was low so now they will do the transfusion to help heal his bruisers. Brody was a bit shocked but he is now OK. Its amazing this is the first thing that's happen to him in 8 months, thought there would be more, as some of you know how Autism affects our children.

Then this afternoon Nurse Matt and i took Brody to the heart test, where again did very well. Luke came in again to visit us and have some fun with Brody.

But today i would like to thank a special friend and her family for thinking of me on Mother's Day and giving me a wonderful Mother's Day present. Thank you Chantelle and Jary Family. That was such a nice surprise to receive my present and a lovely thing to do. Thank you so much for everything you do for me and Brody. xoxoxox

Mother's Day 2010

Brody and i again spent the day in hospital, with no day pass again. Brody has got a fungal infection in his mouth, runny nose, cough and high temps. He is still playing and having fun, but he is just a little bit more quieter and has started not to eat much today.

I had a lovely day in the hospital with my mum, dad and Brody's brother LUke. Luke had flown in today from Queensland. Brody and i were so excited to see him.

We also had a big sleep and didn't do much in the afternoon as we have to get ready for our big week of doctor's, tests and normal routine stuff.

ABI and I are trying to get Brody used to things he does not like such as the nose tube, oxygen mask, we are taking little steps every day to get him used to it all. So when its time for transplant he will wear these things. At the moment Brody has the oxygen next to him when he is asleep, if he wakes up he then gets it and throws it away. Then i have to get up and put it back when he is sound asleep again. So i don't get much sleep through the night or day with putting oxygen mask next to him, giving him meds, nurses coming in fixing machines, changing his nappy and others making noises. Its a very draining experience!!

Brody has done really well with ABI and is improving every day with his behaviour. Its really nice for a change that i don't have to say sorry or explain Brody's behaviour to people. The nurses and doctors are also understanding him and give me time to work with him to then make their job easier. Thank you ABI for all your hard work and time.

Sorry again to everyone trying to contact me or wanting to catch up, but for the next few months i will have no time for anything except beaning here with Brody and Luke. I have so much going around in my head that its very hard to even know what day it is and also sometimes i don't even want to talk about what is happening. As you can understand, you might not want to talk about your work all the time. Well its the same for me, i get tired of the hospital and don't want to think about it or talk about it. Brody and I just sometimes want peace from it all. Thanks heaps for understanding that we need space at this time. xoxoox

Hope all the MOther's out there had a great day and we wish you all the best. xoxox

A Very Quite Brody!!!

Brody was doing really well this morning, therefore the doctors and nurses were going to give him a day pass. Which means we could get out for a couple of hours. But Brody peaked another high temp and then needed oxygen again while sleeping, so our day pass was cancelled. They are hoping to give it to us tomorrow, which would be nice as it's Mother's Day and Brody's older brother Luke will be flying in for his tests this week. As if we are in hospital for a while we wont see Luke much as Brody has tests different days to Luke's test. Grrrrrr....

Brody has a bad cough and his nose is still runny, His counts are 0, so i think we will be in for a while. Apart from his special behaviour activities this morning, he has only watched Tv or day. He also had a big cry and told me he was sick. My poor little super hero!

But it didn't stop him to ask for pizza, as Bill promised him pizza tonight. He ate a whole garlic bread to himself but only ate half a slice of pizza.

Brody and I wish all the Mother's out there a Happy Mother's Day and hope you all have a great day. I would like to thank my MUM as she is the best mum a girl could have, she has been there through all the bad times and good times. She has helped Brody, Luke and I with everything and has always been there from the start, so thank you mum. You are my idol and a wonderful person. Love you heaps. xoxoxox