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.
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