Last night was a hard night as we did not get any sleep, Brody's potassium level was very, very low. Which means if he hasn't got enough it can effect the heart or if he is giving to much it can effect the heart.
Therefore Brody, has to have a heart machine put on him and if anything happens he will go to ICU. but at this stage nothing has gone wrong and he is still doing ok.
He is not eating or drinking, but he is still on the TPN. They have turned off the nose feeds as it was going straight through him. He had 7 dirty nappies last night. this also causes the low potassium level and because he is not eating.
Today he has been very tired and feels sick as he has asked for the sick bag heaps of times, but has not used it yet. His rash is all over in very little fine red dots, and is light red in the morning and afternoon is a brighter red. It makes him itchy but not much.
The doctor's have told us the bone marrow result was the same from before, so his cancer is still at a level they don't like and need to let the GVHD take over.
He will be having a PET scan next week, to see the problems in his gut, as its looking like the GVHD is affecting the gut. they can give something for it, that will help the gut and not stop the work it has to do else where.
If the GVHD gets any worse they will put him back on steroids for a few days and then take him off, its like trail and error. Hopefully it will help get the cancer level down as this will reduce his chance of it coming back, but we will still have that worry that it could come back.
Today marks the a year since Brody was diagnosed and we had to rush him off to hospital. I cant believe that we made it through, but as we are still in hospital and still doing things to stop the treatment, i just don't know how long we will be doing this for.
Thank you to all my friends and family, for their support, gifts, comments, thoughts and love as we wouldn't have got through this year with out your help.
A huge thank you to my mum and dad, for all there support, as they have been through so much them selves and still give love to Brody and me. I am glad i made a decision to stay in Sydney as mum and dad will also need my help, they have a slow battle on their hands and will need all the help they can get too. I love them so much!!! xoxoxo
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