still a struggle

I didn't get to talk much about Elizabeth last post. She has vomited 3 times today. Imagine having tubes going in each nostril down the back of your throat and then having to vomit. Not good. It is scary for her when it happens. She is asleep right now hooked up to the vent. She was able to be off the vent for the entire day today. She says her throat and chest feel like they are being squeezed and it's hard to breathe. When she got fentanyl for the pain that feeling subsided. She just got some anti-nauseas medicine and some verced which is anti anxiety and amnesia drug. Worked like a charm to let her fall asleep.

It's like an emotional roller coaster up here. I feel SOOO sad for her when she is in pain and feels sick and then for a brief time she will feel better and watched a movie with me and conversed with me on her white board. She also checked her facebook and posted a message there herself. Then she feels like she needs to vomit or she gets really hot or really cold or just gets sad and starts crying. I've cried some myself, but not in front of her. I am strong around her, but I feel so alone on this journey. I'm scared for her. I also feel a little helpless. She said she wishes she could just go to sleep and wake up all better. Sedation is an option, but not a good one. She would have narcotic withdrawals and such. So she said she will tough it out.

The anesthesiologist that was with Elizabeth during her surgery on Monday (and I also think he was with her last month), stopped up to visit her. He has talked with us and also Dr. Cotton has told him a lot about Elizabeth. He stopped up to tell her what an inspiration she is to him and that he went home and told his own teenage children about her challenges and her accomplishments despite the challenges. He thinks she is a great kid and good example to everyone.