Tues March 31: I was heading back to CHOP to see Dr Goldfarb, and my stats were dropping. I then went to the ED. I went back to the PICU soon after. My home away from home.
Thursday April 2: They moved me to the Progressive Care Unit.
Saturday April 4: I didn't feel well, and it was a struggle to keep my stats up.
Monday April 6: I was seizing more than I usually would. It was by far one of the worst days in a long time. I couldn't get it right. It was a struggle to breathe, the seizures kept coming on. I am not used to this being this bad. Mom and the nurse tried everything to keep me comfortable and to get my breathing right, but the seizures pressed on and it took a toll on me. It wasn't til about 7pm, Mom got me to sleep. Things calmed downed. I was able to sleep.
I am looking forward to having good days.