He's asleep. He's running a high temp at the moment and he's red all over. He had a reaction to the vancomycin where he was itching his head like mad and now most of his body is red. He's had some Phenergen to help with the itching so he's now in a deep sleep but all his body is still red.
He really went down hill fast this evening and wouldn't let me leave his side. Everytime I went to sit up from laying next to him he freaked and wanted me to lay back down. I knew something was up well before any thermometer told me.
I laid there cuddling him till he fell asleep, his little arms tight around my neck, breathing heavily into my face and feeling the heat coming of his febrile body. I whisper i love him and that everything will be ok, but i don't know that and i wonder if he can hear the doubt in my voice.
Thoughts enter my mind and the tears fall down my face. This is so very hard to come to terms with, this whole journey. Not only do I have to watch him fight through this awful stage of this cycle but even after that it doesn't end.
I'm so sad for him and how terrible he feels and it pains me greatly to not be able to change it for him.
I thought about his cot at home as we cuddled and the last time he was in it. Putting him to bed at night, reading him a book, Giving him a big kiss and cuddle good night and checking on him throughout the night. How different our night time routine has become. He has never slept back in that cot after the night we bought him here. Now our bedtime routines are either working around a hospital routine or a routine of medications at home. We still read the books but now he never leaves my sight at night. He no longer sleeps in his room which so desperately needs to be sorted I just close the door on it and hope I can get to it one day. For a long time I couldn't walk past it with the door opened and insisted it be closed, too many memories..
Im scared, i don't know what to think anymore as its so hard. I haven't slept properly in months.
I will never stop wishing for our lives back, for Jayden to be well and a normal two year old.
My chest aches with every breath, my thoughts are full of fear. I am no longer the woman I once was, I know i never will be as that's not possible.
I watch him sleeping and wish so hard that things were different.
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