Dec 19 4:00 pm

It's a busy day. They took out her breathing tube about 12:30 and she's been a handful since then. She's in and out of sleep. When she's awake, she's AWAKE. She points to the door, tries to get out of the bed, and just doesn't want anything to do will all this. When we settle her down, she'll sleep for a little while. Her throat and lungs are full of junk so she's on some oxygen to help her breath. It wasn't fun to watch them take the breathing tube out. I probably should have stepped out, but didn't. It's just not a pleasant sight to see your little one gasp for air and watch their face and lips turn purple. But she's doing okay now....pink again with the help of the oxygen.

Still working on the urine output. Giving more diuretics and boulis of saline to try to get that kidney working more. They really want to protect that new kidney from getting damaged by the oxalate that is still in her body. The more fluid that passes through the kidney the better.

The ultrasound of the liver and kidney look good! And even better, her oxalate level this morning was 24.6! If it was in the range of 20, she wouldn't need dialysis. We were all pleasantly surprised at that great number and will test oxalate again tomorrow to see if she'll need dialysis tomorrow to help get more oxalate out.

The two words we've heard: mommy and owie. She's not happy, comfortable, or peaceful when she's awake. Very agitated and restless. Hopefully each day, each moment, will get better for her.

Her liver and kidney pillows. Good for a smile.

I got to hold my angel. The best Christmas present ever.