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!

New Staff!

Today has been a hard day, as we have had different staff on. They also have seemed quiet bosy and do it their way. So again after 6 months in hospital we are still struggling to tell staff about Brody. Its not there fault but wouldnt you think they would find out about a patient and how much the mother knows before just starting to boss them around.

Its also been one of those emotional days, as i am missing my sister and feeling more and more isolated from the world. Its funny watching nurses and doctors walk around the halls, having their jokes, talking about their lives and complaining about things, while there are parents in here that feel alone, isolated and sad about their child and have no life. Its amazing how people take their life for granted and just loose what is important.

Brody is still running high temps after the panadol runs out. So he is still on panadol every 6 hours. He eat a little bit more today and had a good sleep, as last nite at 1.00am he decides he wants to stay awake and watch a movie.
His breathing is faster when the temps go up but slow down a bit when he is normal. Doctors dont seem to be to worried about it.

The best part of our day was reading a book about a dragon and then Brody and i drew pictures of dragons, which Brody named Jane. We had lots of fun!

First Day out of hospital bed in two days!

Brody is still having high tempetures and is still breathing fast. But he is feeling much better today and got out of bed for the first time in 2 days. He had lots of fun drawing on the white board. You can see his Autism by not much eye contact with me, his way he expresses his drawing and his way of thinking. I hope you all like watching it, sorry if its on its side.

They have changed meds tonight, so hopefully he will stop having high temps. He is now eating a little bit more. As lovely grandma and grandpa brought him in Mac Donald nuggets with BBQ sauce. Yummy!!!

Starting to get better!!

Brody is starting to get better by the minute. He is still not eating much and having high temps. But he hasn't yet broke his record of 42.0. Which is good! Doctors told us today that the bug is in both his cords now, so they might need to change meds. I am hoping they wont want to take out his cords and put new ones in. Keep your fingers crossed for him!
Otherwise its been a normal day at the jail house, with not much to do!

Didnt have to wait, back in hospital again!

Well we didn't have to wait to see the doctors on Monday as last nite, Brody's breathing got worse and his temp went up to 38.5. So Grandpa drove us down to emergency at 11.00pm. We went in and they took his bloods, started fluids, meds and did a chest x-ray. The doctors on duty were a bit puzzled with him, so she called the head doc for the nite, then she came in and she told me that she was worried, so she called another head doc, that has more experience with children that are having chemo. By the time that head doc came in Brody started to response to every thing.
Brody's breathing was nearly going three times faster than his normal age range. His heart rate was low, he needed oxygen and had high temps, which cause him to hallucinate. At 3.30am he started to get better and could then have a good sleep. Pity there is no bed for parents as i just had to stay awake all night.

About 10.30am they finally transfered us to our normal ward, where we have spent the day watching movies and catching up on our sleep. We found out that Brody has a growth in one of his cords. Therefore we are in hospital now for seven days. Brody is still up and down with temp, breathing and has still got that running nose. He has not eaten any thing today and is very weak. Hopefully the meds will kick in and start fighting this bug.

Clinic Day!

Brody, Grandpa and I went to the clinic today, Brody got his bloods taken and they were very low, so he had to have a platelet transfusion. We went into the doctors office and Brody was very good then usual, until the doctor come in closer to him and wanted to listen to his breathing. But then Brody started pushing her away, and grandpa try to help, but he pushed him away too. Brody then told me that she smelt. Shocked!!! I didn't know what to do, I cant really say sorry my son doesn't want you near him cause your breathe smells!!! I just tried to move his face away while she did it.
I should have know it, as he did it once before to a male doctor, but that time he said it to the doctor. I just said it might be your after shave.

Brody has always had certain sensory issues, as he does not like loud noises, smells and some textures. But now with him not well it seems to be worse. As his senses are effected by the chemo.

Brody levels are still low and we have to go back on Monday to see if he needs any more transfusions. He has still got the runny nose, and now is having trouble with his breathing, as he is breathing quickly and gets worn out very quickly. The doctor did nothing about it and just said he is breathing fast. So i don't know if the breathing is ok. Have to wait till Monday, when we see another doctor.

So, busy day and full of different emotions, as my thoughts were with a friend and family who lost a lovely little boy and had his funeral today. I have had so much hurt, sickness and death in my life the last year and half, i am starting to not believe in this world any more.