Day 13, Back to Grandma's

Brody got the news that we could go home and he was jumping all around the room like a hypo kanagroo. He told the nurses to take off his cords and let him out. But we had to stay around to wait for grandpa to pick us up and fill the paper work out and make his appoinment for friday. So it wasnt till after lunch we got home. Was a bit scary, as i now have to think what i have to do in the real world and as we have been isolated for so long the real world scares you just a bit. It aslo makes you sad as you look around and see everyone doing their normal day to day things and you just wish we could do that too.

The Doc's dont still know what caused all of his problems, as it could just have been from the meds or the chest is the number 1 thing they are thinking. We just have to keep an eye on him and take him back if any thing happens. His leg is alot better but still a bit stiff. I have to continue with excersises for him.

Got home to grandma's and Brody had a sleep, i tried but had hospital people still ringing me. If i dont every answer my phone it is because i am busy or trying to get sleep, so please just leave a message and i will try ring you back.

All Brody wanted was PIZZA as some of you know he has an obession about pizza. It was the first time he has eaten normal food for 13 days. Most of the time he has only wanted custard and yoghurt. I was so happy that he ate something more solid. (see pictures above).

Day 12

We started packing up to go home, as the Doc on the weekend said Brody was doing well and he would be able to go home. That changed as the Doc's had their little team meeting outside the room. Then they dont even come in and tell you what is going on. I had to ask Nurse to find out for me. Next time, i am thinking of standing out there too. Any way, yes we had to stay again. Brody was not happy about that and again would not do any thing the nurses ask. Brody is eating better and going for longer walks now, still no temps and still of the oxgyen. Doc's just want to keep him on meds a bit longer and watch him, as they still have no idea where the infection started. They think it could be the chest but are really unsure. Better to be safe then sorry. So unknown when we will be able to go home.
Took Brody to starlight room where he played the playstation. He really enjoys the games. Only stayed a little bit as his machine started to beep. We played cars and Ben 10, watched DVD's and had a very long sleep. Its a lonely life but we have each other.

Again had more people comment on Chantelle's "My Story for special children", see advert in side coloum. Its the best thing as it is helping people really know Brody.

Day 11

Brody is getting better and better, still no temps and now dosent have breathing problems. He has also been to the toliet twice. (well done, Brods). He has been cranky pants all day, he told grandma and grandpa to go home, he hit a nurse and wont do what they want. I took him for a walk but he just cried and wanted to go back to his room. He dosent want to do anything except sleep and watch DVD's in bed. So today we havent done anything and with the rainy wheather we have both felt tired. The weekend Doc told us that we might be able to go home to grandma's again tommorrow. Here's hoping as Brody and i am so over this. The only thing i hate is its not keeping him in a routine and every time we come in and out, we have to start a different routine each time and go to clinic for different people and different things. This makes it so hard for an Autisum child. As they like routine, familiar faces, and know what is going to happen. It makes them feel secure and thats why he only wants his mummy to do every thing.

Weird Day!

Brody is much better now he is on the high meds. Still no temps all day. His leg is much better but he hasnt gone to the toilet in 6 days, they have given him something, so hopefully soon he will go. Also still on the oxygen while he is sleeping and he is sleeping alot.
Bill was here today with us, he watched Brody sleep while i got a jail free card to go tell my dying pop that i love him. I am so glad i went as all he every asks about to everyone is how's Brody.

They say bad things happens in 3's, well two things happen to me today, 1st i fell over at the front entrance of the hospital and 2nd thing was that i got stuck in the hospital lift and had to call for help. I am scared about what is going to happen next? as the day is not over yet!

My friends from Lane Cove (Jo,Jo and Chris) came to visit today, while Brody slept through us laughing, we had a good time catching up. It was good to talk to friends as its hard to make friends here, not as good as it was making all my wonderful friendships at John Hunter Hospital.

I have started getting Brody out of the bed and taking him for little walks up the hall and back, as he gets tired really easy but needs some sort of physical activity, so he is not just sitting in the bed developing sores and becoming weaker and weaker. Thats about it for today, nothing much happens on weekends.

Bone Scan- Day 10

No temperatures!!!!! Brody has had no temp all day and all night last night. We have to wait 48 hours with no more temps till they say we can go home. But we still might have to wait as Brody is still on oxgyen when he sleeps. His leg is getting better, as he could move it and walk around, with a limp, very slowly and while holding my hand. He has started to look better and be more himself.

Brody had to have a bone scan to see if the infection is in the bones. We walk down to the room where they gave him a liquid in his cords and then put him ontop of the machine. (As seen in pictures). Brody hated this, like Austium children he hates been touched and held down and wrapped up. Brody was ok at first but then screamed and yell as the man taped him up and held his head, so he would be still. It didnt really work, so the man said bring him back.

In a hour later i had to give him a med that would clam him and put him to sleep. As my friends found out, (Shelly and family and Vicki) this was a big effort for me to do. Brody would not take it and i had to hold him down and put it into his mouth. He can swallow tablets with no worries but will not swallow a liquid. The nurse and i then took him down again on the bed, he fell alseep and was so still for the scan. But his bladder was too full, they could'nt do the scan. We had to go back again when he had done more wee wee's......

Two hours later we took him down again, on the way down Brody played us a song with his gutair while singing save a horse ride a cow boy. We got to the room and he had to be taped up again. He was wiggling around trying to get free. It is hard to watch your child go through this as you know they dont like been tied up and wrapped up. But you have to learn how to be cruel to be kind in this situation as they have to run these tests to help him. I just hate begining the bad guy all the time. The scan was then completed, Yeah!!!! and we went back to his room. All the effort made him tired and he went to sleep.

We have no more results and still dont really know what is happening. My wonderful man and Brody's step dad (Bill) come and gave Brody a pet fish for his room. Brody called it Jo, Jo after the mean man on the powder puff girls.

Stem Cell Collection!

Brody had a huge sleep in this morning, he woke up moving his leg a little bit and was a tiny bit happier. Then it was all go, go, as they took him to a ultra sound for his hip and then we went of to collect his stem cells.

We found out that the hip, ultra sound was normal. The stem cell went well and they collected 2.4 stem cells, which they were really happy with. So we dont have to do it again tommorrow. Yeapy!!!!!

You can see from the photos the machine that collects and divides the blood & cells. But its not as easy as it looks, it can cause problems and Brody had to sit on the bed, still for over 4 hours and have his neck turned the right way. This was horrible, lucky for me, my mum came to help me keep Brody entertained. At first they were going to pull the plug but i got him to have a half hour sleep, which made it that little bit easier. We watched Tv and played with his DS, and also played with his Ben 10 men. We still had a few issues of him saying NO WAY, GO AWAWY, and hiting, but other wise they got what they wanted and i am happy with that.

Brody has till got a temp so not going home any time soon and you can see by the photo's he still has to have oxgyen. Tommorrow he will have a bone scan to see if the infection is in his bones, as they still are puzzled.

The 8th Day in Hospital!

Brody's temperature today peaked at 40.4. He is still very tired, not eating or drinking much, he has a very sore tummy and leg. He has not moved his leg all day, a Doc come and had a look but of course will talk with the team and then maybe do something about it tomorrow.
He is not happy at all and wants to go back home to Nabaic. He has not moved of the bed or off his back all day and he has slept most of the time. Still have no results for his chest, but several different teams have come in and put their opinion in the pot. They believe its some sort of lung infection, but still wont know yet. I am getting very worried that after 8 days they still dont know what is causing this and worried about his leg. Hoping its not a blood clot. (cross my fingers).
It has been a horrible day in the jail house as the nurse on duty only saw us a few times and other nurses had to do her job, and other times we were left sitting with the machine buzzing in brody's ear for over half an hour. I cant wait for the change of guards, as some other nurses are just so wonderful and caring. Not a good senory issue for Brody when he is telling me to turn it off.
A bit of Good news today, as Brody's teacher from Great lakes and Manning Early intervention, rang me and told me that her brother and the NECA- National Contractors & Communication Association had a committe meeting and have donated $2000 to Brody's fund. So a big thank you to the local Forster, NSW, REXELL, HAYMANS & CETNAJ and NECA.
This will take off some of the pressures i am facing, as without a job, a single parent cant afford to pay all her bills and be with her child full time. So thanks again and to everyone that has helped us.