Her Journey, My Struggle

June 11

I'm getting my button tube placed tomorrow! So we're coming back to the hospital tomorrow. No more dangling tube when I'm not hooked to my pump! My doctor went over the plan and said that I am getting admitted but hopefully if everything works out like it should, it'll only be one night. He says that he still wants to make sure nothing goes wrong when I go under general anesthesia. He can not do it with out the GA but he'd rather not especially since it is changing the type of tube. 

I also have lost a little bit of weight, I'm at 109.8, but he said that either my rate needs to go up to 75 ml/h or I need to add another hour to my feed. He says that on the day of my tube change that night, we'll see if I can tolerate the 75 ml, and if I don't, then it's another hour I'll have to be hooked up to my tube.

I also got my new AFO today and during my PT, it was crazy. My ankle felt so stable compared to how it's been. He asked if I wanted to try out forearm crutches today or to wait until the next appointment and I said now. I've been struggling walking up the steps to my room since I've been home but I make it work so my parents haven't had to move me into a room on the first level since I can't use my walker on the stairs but I can with crutches. During PT, I managed to walk up stairs and not feel like I had no control over my ankle.

It was really weird at home today when my mom and I were packing things because usually I can't help her when we're about to go to the hospital and everything is in a frantic pace, but not tonight. She took the bag that she keeps in the car of some of my clothes in stuff in case of emergencies or if I have an appointment and I get admitted from it, and put a few extra things in there, just incase. 

Hopefully tomorrow night will be my last night in the hospital.