Day 12, and 6 months today!!!

What a busy day we had, first was a horrible time with a nose test and throat test. Which Brody again had to be held down and he cried his little heart out. Very sad!!!

After we got over that, the fun and happy, lovely lady Jill and our new friend Chris come and played some behaviour activities with Brody. They have so many great ideas and give Brody so much more than they know they do! Thank you!

We then had a special visitor from the hospital come and play some great music with us. Brody has always love the guitar as his brother Luke plays one. So he had lots of fun playing and making lots of noise. It was good to see him beaning happy and not so frustrated with the world.

Brody has had yet another temp of 38.2, but it went back down within an hour and a half, without panadol, so hopefully they want make us stay the 48hrs from that one. He also had to do a poo test today, was worried about that as he has only done one poo in the 11 days, they are giving him something for it but Brody just wont go. Yeah!!! He did finally go tonight! I think he is starting to feel and get so much better, his levels are still low at 0. so they still might keep us in until they get better.

Its so hard to tell you all what this is like, as if you haven't been through this your self, you wouldn't understand. Try picturing beaning trapped in a room, with no way out, no one to talk to and not knowning when this will get better. AS you can tell, i am having one of those days were you just feel down, lonely and depressed. You hear everyone talking about their lives and what they have been up to and how happy they are, i am so happy for them but then so sad for us as after 6 months today we are still struggling to keep our heads above water.
I think one of these days i am just going to have a meltdown as i have had so much hurt in my life the last 4 years that my heart is starting to pain. I haven't really had the time to fix my pain, so now its all just catching up with me. Oh well!!

Hope you like Brody the rock star video!

Day 11, Bandage Bear Week

Got no new news as everything is still the same. He is still having temps and a running nose. Doctors have said they will run some more test during this week, to exclude things, but really its mostly his body reacting to the chemo. His levels are still low, so they are still keeping us in isolation.

The nurse and i are trying to push for a sleeping test as he has had breathing issues since he was a baby and its only when he sleeps. I have been trying to get one for years, and now that might just happen. But when he is better.

Remember to support the hospital for Bandage Bear Day. Brody and i both had a cup cake as our ward had cake day. So we helped support our nurses by buying their cakes. Yummy!

Day 10 in isolation Ward!!!

Brody slept in till 9.00am this morning, it is the first time ever, I am just in shock!!!
We had a normal morning of games, TV and Nurses coming in and out. Brody was a bit angry and hard to please today, he wouldn't do what the nurses wanted him to do, it was a real struggle. Just one of those horrible days.

Brody had yet another blood and platelet transfusion, his levels are very low and still can not leave the room or even think about going home until he has no temps within 48 hrs and his levels go up higher. They changed his medication today to some thing a bit stronger.

He then had a afternoon sleep and awoke with a temp of 39.4. The doc was called in again and they have made the decision to up the dose of medication. Tonight Brody also had a chest x-ray, wont get result till tomorrow.

Hopefully now with the medication changed and dose put up we might see some improvement, otherwise i can see as in here for yet another week.

A Never Ending story!

It really feels like a never ending story as each day is the same, routine checks, play activities, watch movies and sit in this tiny little room each day.

Brody still is having temps, but not as many and not as high as they were. His levels are still to low as his immune system is at 0. So they wont let us at of isolation until they improve also. He is still needing oxygen while he sleeps, as if he doesn't get enough and can cause more problems. The doctor's told me today that his bloods came back high, so they didn't do the blood transfusion. But they think this result is wrong, so they will check again tomorrow. He might need yet another platelet transfusion tomorrow as well.

Brody has a thing about this one lady doctor as he mucks up with her all the time. He kicks her, hits her and wont do any thing she wants. We have to hold him down each time. I think its because she is very quiet, and too gentle in her ways, he knows he can get it over her.

Here is a video of Brody at the clinic, he has to have a nose test, but he doesn't know that yet. But he still is stressed about it as every time we go he thinks he is going to have the nose test or a sharpie.
Yes this can be normal behaviour of any child, but this was a good day, he does get worse and sometimes more violent. Other children come around after a while, or you can offer them something in return, but you can't do this with Autism children. Nurses have told me that it is easier with other children.
So please dont judge children or parents if you only see things once. As parents dont want their child to have this and they dont make it up. Autism is hard to live with and they are not normal children, so dont say Oh but he looks alright or all children do this! Because they are not normal children!
It is heart breaking to watch, but this is what i have to go through all the time and try and hide my tears and pain. Then i have to hold him down and become the bad person, as after all this he hits me and tells me off. Its the most horrible and difficult thing i have ever been through in my life, but it has made me stronger person.

The weekend!!!!

Same old, same old. Still in hospital.
Brody is still having high temps, but only mild ones, as they are in the 38's. He is still having oxygen while he sleeps. His levels are still low and looking like a blood transfusion tomorrow.

He ate lots today as Bill brought his favourite food, PIZZA. he ate 3 slices and 4 bits of garlic bread. Cant believe it as he only has had jelly all week.

My wonderful friend Jo, Jo come to visit me and gave a lovely prezzie of Australian animals to Brody. Thanks Jo, Jo and all the gang from the Lane Cove National Park. Love you all heaps.

The hospital is very quiet on the weekends, with not many people around any where. Its really gets you down during the week as you see so many children with different problems. But i do love giving children when they look at me and then want me to give them a high five. Its so cute. Then their mum says sorry, i explain its ok, i am used to it, my son also sometimes goes up to people and hits them, and i used to be a early childhood teacher. Children are so special!!!

Day 7 at hospital

Today Brody has had only one temperature, but still needed oxygen while he sleeps. Also found out that he has tested negative to the bug, but he could have something else causing the high temps. They changed the meds today, so hopefully that will work!

I also found out today that we have about another two to three months of coming in and out with temps and chemo and then they will start the transplant. Brody will have to have a nose tubing for feeds before the transplant, which i don't know how he will go, as he doesn't like to wear the nose tube for oxygen. But he will have to have it, as he will need to be fed to help put on weight. Brody will also need radiation and he will get mouth sores from this, he will not be happy. I don't know how he will cope with all this. It is really scaring me and I am thinking also of how i will cope.
Brody still has issues with his dressing getting changed, how will he go when we have to clean sores in his mouth or touch his nose tube to feed him. Worried!!!!

Otherwise its been a normal day at the jail house, as soon as we have a Nanny nap, someone comes in to talk to me. So getting more tired, angry, depressed and just worn out. Poor Brody is getting sick of it and wants to go back home to Nabaic. All week i have had to explain to new nurses, what they can do and what they cant do with Brody, wish we could just have a couple of nurses work with him all the time, as this would help him so much. You would think a big hospital like westmead would understand about Autism, but they know nothing. Brody has to adapted to the Hospitals way only. Not only is he feeling bad, but he has to stress out about simple things, cause they want adapted to him.

I Love Fruit Loops!

Yesterday Brody had Jill come and visit and with Brody's favourite magic ball. He also had a visit from his father, by then he was really tired and all he wanted was mummy.

Last night Brody had to have oxygen as his breathing levels were low. The machine keep going off all the time, so we did not get much sleep. Brody's temps are still going high when the panadol runs out. His levels are still really low, that he had a blood and platelet transfusion. He is not even aloud to go outside due to his levels beaning really low. Doctors are keeping things the same for now but might change his meds again tomorrow. So we might now be in here till early next week, but the doctor told me high temps can last weeks. Hope Not!

We had a busy day today with Marie-Anne coming in and playing a pizza game with us. Nurses setting up every thing for transfusions and at last Grandma come with the fruit loops. Brody ate a whole bowl full. Its the only thing he has wanted in the last couple of days. All of heard is give me fruit loops.

Brody then had a little sleep. So many nurses have said to me that Brody is amazing, to have such low levels and have high temps, and still look so good. I said that's my boy! He is very tired, sookie, frustrated and fed up with it all. So am I!