Bella had a good night. 9:45 AM she started to desat. She often desats, but she is usually able to pull it back up. Not this time.
She is now back in ICU. She is intubated and on NO. They are starting an arterial line and a central venous line.
My poor baby. Upstairs in the progressive care unit, they felt she was having a pulmonary hypertensive crisis (same as when we were admitted). The ICU doc isn’t convinced that’s it. She didn’t respond to the NO the way they expected. To add an element to the equation, yesterday afternoon they decided to stop her continuous drip feedings and start feeding her bolus feedings again. The doctor is suspect of her feedings. He thinks (as did the pulmonologists) that she might be aspirating her feeds. Her x-ray was hazy. There is also the chance that she has gotten sick with some bug. We’ll see.
As far as her liver and bones, I discussed those with the attending this morning during rounds. They were ordering a liver panel to look into that. The bone looked like there had been some infection, but her swelling has gone down. They want to do a follow up x-ray in a few days. We’ll see. It’s so low on the priority list right now.
I have to add – Lizzy was up here with me today. Things were nuts – there were at least 20 people in our room at one point. The child life specialist came in and talked with Lizzy. She got her a teddy bear and they gave him an IV. She was a God send during this crazy time. What a blessing she was to us!