Just Like a Rockstar!

Lyla has had a great day today. Because she was off the propofol when we went to fluoroscopy, they were able to get the pictures they needed. Lyla was a trooper and breathed on her own for several minutes while they did their thing. I got to go down today and I'm glad I did because she definitely needed some comforting. She was very active and at one point almost rolled over. Good thing Cathy was on the ball or she might have lost her tube.

After we got back upstairs we just let Lyla sleep. She has been much more alert today and needs some rest. Melanie, Cece, Drew and Braden brought us lunch. It was great to give Cece a big squeeze since I can't hug Lyla; and the chicken they brought was awesome!

I wasn't able to stay downstairs the whole time since Dr. Kubic came in shortly after I started eating. I wanted to make sure I was upstairs for his visit. He and Dr. Thilltlsked about the fluoroscopy and said that while it wasn't as sharp as they would have liked, it gave them what they needed. Kubic said the diaphragm is moving paradoxically, but not as bad as he has seen. Apparently Lyla was the topic of the pulmonology round table yesterday and when they did a straw poll, half the docs thought they should do the plication and the other half said to give Lyla some time. It's still a possibility she will have the surgery, but for now it is wait and see.

They started her on Cpap trials today and will ultrasound the diaphragm tomorrow. She did very well in her trial today and was very awake. It was great to see her smiling and happy to see all of us. She was excited to see Ryan and Emily and waved at both mom and dad when they came in to see her. Cece brought her a set of puzzles and she was very excited to play. I showed her the puzzles, then put them away. She started crying and kept trying to say puzzle over and over again until I understood her. After that I let her choose a puzzle and she held the pieces while I put it together.

After so much excitement she was quite tired, so Cathy turned up her sedation again. She is resting now, but is still in restraints to make sure she doesn't pull out her tube when we're not looking.

Things are still serious, but I feel MUCH more hopeful today than I did last night. Seeing Lyla's beautiful eyes and smile reassured me that she's the same little girl we've always loved and that she will pull through this just like she has everything else. Loving our little lady!

Photos : Chatting with uncle Ryan. Cpap trials -- all the grey breaths are Lyla's own!