We have as a lot of ups and downs this past week. Aaron was entirely off his pain meds last Friday. He would leave the room to walk and go to physical therapy. He played and was returning to his old self. The past two days he hasn't wanted to get out of bed, play, or watch tv. We are putting him back on pain meds to see if that helps.
He also won't eat. Poor nutrition increases his chance for graft vs host disease, which we want to avoid at all cost. He got a feeding tube in place a couple of days ago. He already coughed it out once and we had to replace it.
Last night he woke up screaming in pain, desaturating, high heart rate, and rapid breathing. The doctor came and said he does not know why this is happening. It may be a flare up of his parainfluenza.
He also came back positive for EBV yesterday. Right now his levels of virus are low. They will watch it closely.
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