Miriam had a very good first night. She was monitored for some secretions in her lungs and a minor fever, but these are expected things and there is no cause for concern. She also had some percussive breathing treatments to help break up the stuff in her hulgs, and by 4:00 am her lungs looked/sounded clear.

Her surgeon came by at about 8:30 to check her out, and he said all of her labs and numbers look really good. She continues to be a big strong girl.

The best news is that over night all indications pointed to being able to remove the breathing tube today. Dr Williams agreed, and they started that process right away.

As of 10:00, she is breathing almost entirely on her own (she still has the tube in, and it is assisting with just enough pressure to cancel out the added difficulty in creates.) She is in a test phase with her sedation medications cut in half and breathing on her own to make sure she can handle that. If all goes well, they will remove the tube today and take her off sedation. So you can expect some more photos and videos when that happens. (We are limiting the photos while she has the breathing tube in so that hopefully when she looks at these posts in the future, that part of the memory will not be reinforced.)

Oh, and we changed her “Teaching Needs” on the board in her room. This was yesterday:

And now this is for today:

Silly parents.

Noon update. Grandma and Grandpa are here! Abeea and Pappateaux stopped by early and then traded with them to play with Cecilia and Hildi. So both grandparents have seen her awake now.

They are about to cut the sedative entirely so that they can remove the tube as soon as she is stable and awake on her own. She really does not like the tube, so this will be a little rough. But the dietitians stopped by and she is go for a popsicle as soon as the tube is out!

No more breathing tube!

The first thing she said she said was “cut cake game” and “rainbow cake,” references to the iPad game she was playing in the pre-op room. She fell asleep before daddy got it downloaded.

She got to play it next time she woke up. After a little while she started to get restless. Turns out she wanted to be done, but needed to wash the dishes (the last step in the game) before it was taken away.

She’s going to have a rough time for the next day or two as her body continues to take over. She’s sleeping much of the time, but when she’s awake she is very wiggly and tries to get up on her hands and knees. She broke one of the catheters rolling over. She says she is “uncomfortable” but not in pain. And she just said, “I want to take my tubes out.” We anticipate this to be the status quo for the next day or two. So it may be a long night sitting up with her.

No popsicle yet, unfortunately. She attacked her Tylenol and asked for a “sip,” and she will start to get fluids orally once she is a little more consistently awake.