So, I'd love to say we've made a lot of progress. In some ways we have, but in others - not so much. I'll start with yesterday afternoon. Olivia has to be a 3 liters on the high flow oxygen to be able to eat. We were trying everything in our power to avoid another feeding tube. The nurse finally turned her from 6 liters down to 3 just to see how she handled it. Her oxygen saturations hung out in the 80's for most of the afternoon. So, she went back up to 6 liters and up a little on her nitric oxide again. However, they have avoided the feeding tube so far.
Throughout the night, she was able to get to 4.5 liters high flow and down to 1 on her nitric.
This morning, they decided to turn off the nitric, get her to 3 liters and let her eat. This happened all at the same time. She threw her pacifier across the crib and sucked down a couple of ounces. She has a lot of upper airway congestion, so she coughed up a bunch of junk. Afterwards, she looked the most comfortable she has in a long time and fell asleep very peacefully...then, her sats dropped into the 60's. So, back up to 8 liters, chest x-ray, blood work, etc... was done. Once she was done with the lab stick, she sat up, played for a while, and smiled at the nurses. Her sats jumped to 100%. Who knows? She is so confusing. She is still at the 8 liters, and taking a good nap. Her chest x-ray may have looked a little better that this morning.
The cardiologist popped in. He is going to look into how long you have to wait after the flu and pneumonia before putting a child on the heart and lung maching during a surgery. Once he finds this out, he's going to let me know. The whole team of doctors will discuss her on Monday and make a plan for surgery.
She is also going to be getting some tests done tomorrow to check her adrenal gland function. There is a test they did this morning that shows low cortisol (the hormone that her adrenal gland produces, I think) She will be given an IV drug tomorrow and they will then draw a cortisol level after 30 minutes and again at 60 minutes. If her level continues to rise, her adrenal glands work just fine. If not, they'll do some more tests.
That's about all that's going on so far today. A few steps forward and a few steps back!
5 years ago
2 comments:
Olivia does like to keep things interesting doesn't she? At least she got to eat today. That's something.
Looks like we'll need to plan a Small Group outing to Peoria for sometime in May. At least we'll get to eat somewhere nice ;-)
K~
Julie, I must say that I'm impressed that you can keep it all straight! All that medical lingo must be confusing at times. I guess blogging is a good way of documenting everything.
Glad to hear Olivia is making a little progress and that you're getting some answers.
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