Sara seems to have had a nice quiet night. She got a little agitated and they gave her something to calm her and let her rest. I can only imagine what she is going through.
She has a great nurse today, Jan. She's really experienced and is very like minded with me about the kind of environment I want around her. Emanate calm..don't fuss..let the girl rest...but watch for her to initiate communication if she can...and engage her when it is obvious that she is awake and participating.
We had a horrid situation this morning - not with her or her health, but with one of her doctors. He took it upon himself to try and convince me to "let her go". He said he would not want to be in this state (Locked In Syndrome). He persisted in trying to convince me that it was what she would want, not even knowing what that is.
Well, long story short - Sara and I (and Michael) have talked about our wishes given different scenarios. Those scenarios being permanent coma (persistent unconsciousness) or vegetative state (unconscious/unaware). Those are completely different states, and polar opposite of where she is. She is Locked In - FULLY aware and awake, but not able to get her body to move meaningfully with the exception of her eyes. Other areas do move (her eyelids, extremities, turns her head slightly.)
So...they want to make sure I am abiding with her wishes and since we haven't talked about this specific wishes they have assumed that I am not. Well, that is not the case. She has been asked. I told her that they asked me if I wanted to sign a DNR (do not resuscitate) and that I didn't think she wanted that right now. that she wanted to go ahead and fight. I asked her if i did right and she responded "yes". Know this...we are in uncharted territory here, but I am doing everything I can to ensure that she is in control of her destiny.
That doctor, who has now been fired from her case and reported to the hospital administration, was so wrong to force his opinion on her situation. While I appreciate all the input that I get from every source, in the end it is Sara's decision. And in the absence of her ability to make that decision, it is mine.
Now...lightening this up a bit.
Let me tell you about she and I "talking" this morning...it makes me smile replaying it in my head...
Mom: Hi Sara, Mom's here. I'm going to stay with you today and sit here and work. I don't want to bug you if you're resting..so if you want me to interact with you give me some movement.
Sara: tensed arms and shoulders, extended fists
Mom: Sara, I'm going to open your eyes. Do you want to try and open your eyes for Mom?
Sara: Cracked eyes
Mom: (opened eyes for her) Hey Baby Girl. (focusing)
Mom Note: I stopped this entry when she started to code. I refused to leave her room and sat and watched an amazing staff work like a hive of bees helping Sara. I just sat and cried, watched her face, and told her that I was here and she was ok, it was ok. I'm not going to finish the entry about our interchange this morning. at this point I just lose it...until I can see those beautiful blue eyes again talking to me...
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