When Ava was awake today all of her limbs and her head jerk. The fellow said that she did not think these were deliberate movements but instead choreiform movements. These would result from damage in the brain, the basal ganglia. That's really all I know. I've been trying to research it, but it is too annoying on this old ipad. The fellow said that it has been seen in kids coming off of ecmo, but that was an even narrower google search and I had no luck. She said that at this point it is concerning only because she might accidentally adjust the ET tube (the tube down her throat for ventilating the lungs). Otherwise there was nothing she would do for it aside from paralyze her again if it became a problem. These movements are complicating the fine balance of keeping her blood pressure in a certain range because when she is awake and jerking her heart rate and blood pressure are high...so the nurse turns down the vasopressin, and turns up the dialysis setting to pull off more fluid from the blood. Then she gives her more sedation to calm the jerking movements and her blood pressure goes the opposite direction and she has to turn up the vasopressin and stop pulling fluid off. I don't know if this will continue forever or implications it has for functioning in life.
The ventilator settings were weaned a tiny bit today. Her bilirubin number keeps climbing so the jaundice is getting pretty bad. That liver really needs to wake up and help with this because the dialysis machine does nothing about it. They stopped the lipids (fat nutrition) that she is getting in her veins to try and take a little stress off the liver. The artificial nutrition that goes through the veins is stressful on the liver. We don't know if her abdomen can even handle food. This will not be possible until she is on much lower ventilator settings and probably less sedation. Sedation and narcotics affect digestion.
This is all I know. It was hard to watch her flailing today. She looks like she is in such distress. I hope she is not. Talking to her or holding her made it worse which, of course, makes me feel even more helpless. I have zero ability to comfort her. She really only looked comfortable when she was sleeping or more heavily sedated.
Mommy and Ivy getting ready to go to dinner. This is the Ronald McDonald Room at the hospital. It's very nice.
Oh Amber I'm so sorry to hear about all of these troubles. I relate to so much of what you are saying...that writing is therapeutic...I'm glad you are doing it! Wanting her to wake up yet wanting her to be comfortable...and that awful feeling of not being able to do anything to comfort her. I keep praying for waves of peace and love for you and your family.
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