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Monday, September 28, 2009

Monday evening update

I am sitting in a dark and quiet room at 920pm, and Gabriella has been in a super deep sleep for about 3 hours. She has always been a heavy breather and is doing it right now as she gets some much needed deep rest.

Physical therapy was interesting, for sure. She was awfully angry at the therapists, because she was still so tired from the morning and didn't want to exert her energy. They eventually got her to sit on the edge of her bed for a moment. She was frustrated and mad. They got her onto the bedside potty and she tried to go. When they got her up, they had her stand. Gabriella, being her strong-willed and sassy self, walked herself with minimal assistance to the bedside. She wanted back into bed so much she got herself there! Praise God for leg strength!

The therapist said first things first, she wanted the arm board off her right arm. I was totally in agreement.... if her movement is going to come back at all, it won't happen strapped to a board. The nurse got it off this evening, and it is great to see her little "lazy arm" free.

The in-patient rehab doctor came by to qualify Gabriella for therapy once we are out of PICU. Gabriella must have had a crush on him, because she was smiling and showing off her little talents. HE made her happy, and she responded well to him. I hope he comes in daily!

The swallow test was easy peasy. When we went into the room she smiled and nodded her head. I knew immediately that it mean "I've been in a (x-ray) room like this before! I know this isn't bad". She sat in this chair, as I fed her multiple consistencies of fluids. The real-time X-ray took a picture of where the fluids were going once swallowed. Thinner liquid was going to her windpipe area before making it to her esophagus, but thickened fluid went the right way. They are going to start her on a pureed diet soon, and slowly work on soft foods. Once the muscles regain some strength, we will work on thinner fluids. And hopefully stronger mouth muscles mean some return of some speech or expression. I so desperately want to hear her voice. And I want to hear EVERYTHING she has to say about what has happened the past few days.

We are mastering the art of communication. It is much like a newborn baby, in that I need to read her signs and habits to know what she needs. We are using simple signs for nausea, potty and more. I am also able to understand what she needs or wants based on how she was pre-stroke. It is simple to figure out what she is thinking, and we try to enforce that we acknowledge when she is mad or upset or frustrated, so she doesn't feel she is alone in her feelings since she can't express them. Tonight we caught her staring at a picture of all her little cousins. We asked her if she missed them, and she nodded yes. It was a hard realization for her this evening, but she will be back with them in no time. And I know for a fact they will love on her and be patient with her new way of play.

So as I said, she is sleeping deep. We just took her potty and she is back in bed, not missing a beat of sleep. We got checked into the on-campus RMH so we will be utilizing that. Paul will sleep there, and on occasional nights someone will come and bring PJ to sleep there also. I will shower there and maybe nap on a slow day..... but most likely not. Who am I kidding? I hate leaving her side to use the bathroom or grab some water.

Although I have nothing to complain about compared to the complaints Gabriella must have, this PICU room is freezing. During the day it is around 69 but I swear at night it is 60. We are going to watch the temp gauge tonight to see what it drops to. We have mastered the art of wrapping ourselves in blankets like burritos just to keep warm! Just had to whine a bit... but its cold. So someone smack me for always complaining about how hot Arizona is. Hahaha

Praying for a not-so-busy but just-as-productive day tomorrow!!!!!
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