Another Update, A Different Direction

     Things are going. Not as fast as we would all like the to but they are going. For the last few days we have just been waiting to see if the swelling goes down in her throat so the breathing tube could come out. Yesterday we heard a cuff leak - which means when they deflated the balloon surrounding the breathing tube they could hear her breathing around it. It was only a slight cuff leak but it was something. It earned me doing a happy dance, haha. The doctors decided during rounds that they were going to wait until today to attempt to take out the tube again. Only this time they were coming at it with a better plan. The plan: to sedate her because they think that her anxiety  definitely  didn't help last time. Then to stick a camera down her tube and see what is going on, what could be causing the inflammation. Then they would put a MUCH smaller tube down the breathing tube and pull the breathing tube out while leaving the smaller tube in. Then if she could breathe on her own for a few hours they would take that out. If she was still struggling to breathe then they would be able to just guide the breathing tube back over the small tube. Things were looking hopeful for today.
     I stayed the night last night (like I have every night, except one, when Wendy stayed) and was waiting for rounds. The doctors came around and we talked about what was going on and their plans for the day. Nothing had changed although today they weren't getting a cuff leak. They said that they were going to have a bunch of equipment and staff in the room so I couldn't be in there for the  procedure. Once they started setting up I went in to the family lounge to wait. Lucky for me I have a great friend who works elsewhere in this hospital and she brought me up food and sat with me for a while. Mom's nurse eventually came in and told me that it didn't work. They had to put the tube back in. They did find out what was causing them difficulties though. 

Apparently, her throat is fine, not swollen, it looks good but her larynx wasn't functioning the way it should. When you take a breath in your larynx opens and when you aren't breathing in it closes. Hers was doing the exact opposite. They have no idea why it was doing that but it does explain why they now had two failed attempts at taking the breathing tube out. I knew going in to this that if the outcome wasn't a good one then we would be talking about having a tracheotomy. I knew this would be completely devastating to mom but I was trying not to think about it because I was still hoping for the best. Unfortunately, that is what we are looking at now.
     It was a very hard day today. Not only had I been here all night but I was here until 3:30 in the afternoon with very little sleep and with Mom who was very upset. When she woke up from the sedation and was told what happened she was very overwrought. She is worried it will scare Angela and Haleigh. She's worried Haleigh won't love her anymore. She's just very depressed about the situation. I tried to reassure her that they do NOT think it will be a permanent thing but at this point there was no calming her down. I just tried to comfort her by reminding her we loved her, we were here for her, and that I thought things would be getting better.
     When I went home this afternoon, I was able to sleep for an hour or so, which I guess is better then nothing but now I'm back here. While I was gone (she is never alone, either Grandma or Angela is with her), the doctor came in and had her sign a consent form for the  tracheotomy. It looks like it will be happening some time tomorrow. So, now I'm going to attempt to sleep for a bit then we will see what happens in the morning. Please continue to keep us in your thoughts and prayers.

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