Last night was rough again for Ella. We only had a few hours of sleep.

She had a chest xray this morning which looked good and so they made a few changes today. First off, the respiratory therapists have been weaning oxygen during the night shift while I was asleep and not telling me! It was nice to see her at .5 liters this morning (her baseline while at sea level). However by noon, she was not saturating well. They weaned too fast so they had to turn her up. Right now, she is on 1 liter and seems to be stable. The doctors ordered to turn down the nitric oxide to 10 parts per million. Also, they decided to wean the methadone slightly.

Ella had moments of feeling fine, especially right after her withdrawal meds (like above sitting in her chair). She would get excited and happy. But then at other times, she would get very fussy and agitated, sometimes jittery and itchy. In between, she went through times of the day where she just did not want to be bothered – not even from mom or dad.

Another challenge the past few days: she is so thirsty from being dried out. She wants to take water by mouth, but it needs to be limited since they need to limit her intake. That is tough to not give her water when you know that she is so thirsty. When we have to stop giving the water throughout the day, she would get very agitated. It’s been challenging.

We were able to make some progress with food. The docs were interested in increasing her volume and I requested to stay at the same amount since we had some challenges yesterday. We stayed at 10ml per hour today, but I would bolus 20ml and let her rest for 2 hours. She handled the food and the volume fine. We gave Maalox once last night at 3am and once at 3pm to help relieve tummy pains. Otherwise, her tummy seemed to empty faster today.

We’ll see what changes come about tomorrow as we start another week. Thanks again for the thoughts and prayers.

Psalm 62:8 (NIV)
Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.