December 1st. SMA results came back- negative. She didn't have SMA. We were shocked and happy. but then the fear of well what does she have came. With SMA there was a chance she could live a somewhat long life. We would be able to care for her and be with her for a much longer time. I remember Dr. S didn't stay in the room long with us. She said she needed to go back over all the tests they had done and look at everything once again. She said she would come back the next day with a new plan. That night I went to bed praying so hard that this negative result was a GOOD thing. but I just knew there was something else to come.
We were moved to a more permanent room... It was private. It was newer and it was nice.
and Makenzie was finally able to be extubated. She held her oxygen levels at the right point for a good amount of time, her lungs looked good and they were ready to get that tube out. I remember being in the shower that morning. I remember crying. I remember thinking how great its going to be to hold her. Really hold her. Not just sit on a chair pinned down and unable to move at all. Not that I was complaining about that.. that was the highlight of my day but I was so ready to hold her over my shoulder. Why I missed that so much? Maybe I missed the closeness, or the feel of her breath on my neck or the freedom to nuzzle my head into hers. Whatever the reason I missed those moments so much. She was suppose to be extubated at 11. They needed certain people in the room to do it in case something went wrong so we had to wait. I think it was closer to 12 or 1. I am not sure the exact time. My friend Mallory came to visit that day. I hadn't seen Mallory in a while. I couple years I think. She was a sweet friend from high school and I was so happy to see her. I wanted to visit. Chat. Talk about anything other than what was surrounding us. I was excited to have someone there when Makenzie was finally off the tubes. I really don't know where Mallory was. What she was seeing or thinking.
I was standing next to Makenzies side when they took the tube out. Immediately she started to distress. It looked like she couldn't breath at all. She was gasping for air. She was watching me. Her eyes fixed on mine. I was standing right there. Leaning over to her. Stroking her head. Kissing her. The RT said this usually happens and she just needed to calm down and she would get used to breathing on her own again. Her mouth had tape residue. Her mouth smelled of that orange smell that will forever be inked in my mind. The used these almost wet wipe things to get the tape off and it smelled like orange. The smell was really strong in those moments. I kept asking Kenzie to calm down. I kept trying to make her feel better. I asked the RT what can we do. How can we help her. I blinked and all the sudden there was foam coming from her mouth. The nurse standing at my side said she was just not strong enough and we needed to intubate her again. There was a bit of a rush at that point. I was kind of lead out of the way. I stood next to Mallory. In the hall. There was several people in the room. I remember a nurse turning to me at one point saying they were just having trouble getting the tube back in. They were taking a long time. I wanted to go in there and be by her but there was no room for me. There was a lot of people trying to help her. They gave her something to help her relax. I remember catching a glimpse of her foot or leg here and there through the people. We were standing outside the room that was lined with glass windows so we could see the people. Just not Makenzie. I turned to the left and saw Ryan. He didn't realize we moved rooms and was coming from our old room. I am not sure if he got off work early that day or if this whole thing just lasted that long. I was so happy he was there. I needed him. Mallory left shortly after. I feel bad I wasn't able to visit with her properly but I hope she knows how nice it was to not be alone. Even if we didn't say much I was thankful she was by my side.