Wednesday on the Floor!

Today was a busy, activity filled day. Lyla didn't sleep longer than two hours last night. After being sedated for several days, i guess she didn't feel the need to sleep during the night. Shortly after I got up at 7 the nurse told me we would be moving to the floor today. I took a long shower and packed up our sleep room. I'm always glad to leave the picu because it means Lyla is getting better. At the same time, it also means giving up our sleep room, nice big patient room and one on one nurse.

We got to the floor around 10:30 and spent some time getting settled in. Good thing we finished right before Ran and Mom got here! Lyla talked with them between periods of spacing out. She has been having hallucinations all day. She told me her tv was cool because it was all around her, and she kept trying to grab things from the air. Later, she was staring at her hand like she had never seen it before. "Mom, I have three fingers! I just got my pinky! I just got my mouth!" She also went though a period of repeating things people said, in real life or on TV. Every so often she would just space out for a while, almost like she was sleeping with her eyes open, and then wake up saying, "hey! Hey! Hey!" For a couple minutes. She said her name was Pinocchio. She asked me how to say apple in Chinese. It was quite weird, but apparently normal for people who have been in the picu for a long time. The doctor said he sees it in lots of adults but rarely sees it in kids.

She got approved to eat soft solids after a bedside test with speech therapy and loved eating some Mac and cheese for lunch. She had a tuna sandwich again for dinner and a bunch of grapes and most of a tortilla. She had some water, then asked for a can of coke. Guess she's feeling better!

She had fun painting pots with Mom. They also did play dough and just chatted. Mom and
I were laughing with each other as Lyla kept saying and acting out the weirdest things. We did some laundry today and Lyla and I did our best nun impressions in honor of the new Pope Francis. We had a great time playing bilingual bingo and even won!

Grandpa stopped by the check in and Dr. Kiesling came for a visit too. I was a social call, but reassuring for me since no one here seems to know much about spinal cord stuff or how that might be contributing to what's been happening with Lyla. Dr. Bendel happened to call while Sarah was here so she gave us her thoughts on what was going on and said that after talking to Dr. Bendel she ruled out a few things she thought might have caused Lyla's breathing difficulty. We still really don't know why any of this happened.

She and I are hanging out tonight. She has gone to the bathroom twice and is very conscious of not going in her pull-up. She's such a smart kid. It's fun to have her smile and personality back. Hopefully tonight she'll sleep and she'll feel even better in the morning. No telling yet how long we'll be here, but it will be at least until Lyla isn't needing oxygen anymore. Maybe this weekend?? Whatever it takes for her to be healthy!

Pics: happy to be tube free, loving Mac and cheese after a week with no food, bingo!, silly times with Daddy's laundry, painting with Grandma, pancakes with syrup and whipped cream!