Tuesday, October 24, 2000
I am doing super! Today I was off the ventilator for eight hours from 11:00 a.m. to 8:00 p.m. Mommy was with me almost the entire time, and I did great. My oxygen and lung pressure were both good. The doctors also increased my milk intake to 18 cc every three hours. Boy, am I getting big. Last night I weighed 3 pounds 8 ½ ounces.
Mommy got to actually lift me out of my ortho board tonight. So, technically, she really held me! The nurses have to lift me out of my board every four hours to check my head for sores. Mommy was really nervous about lifting me up and keeping my neck in alignment, but the nurse said that she was doing a really good job.
Mommy got another chance to lift me up about half an hour later when the orthopedic techs came to check out my board. They brought a sock to put over the board to help absorb some of my sweat. It didn’t work very well though, so they took it away. Mommy can see why I sweat so much in that board with the heating lights over me. She was sweating quite a bit herself while the ortho guys were there!
A speech therapist stopped by to introduce herself this afternoon. She will start working with me more in the next week or two once I’ve been off the ventilator and am stable with breathing on my own. Mommy is working on getting me to suck on either a pacifier or her finger when I’m awake, which isn’t very often. I’ve been sleeping a lot the last couple of days because all this breathing on my own is wearing me out. I did open my eyes a few more times today. The speech therapist told Mommy they have about four other kids with Goldenhar Syndrome in their clinic. One little girl is two years old and also has a trach.
The hospital Deacon stopped by to see how I was doing tonight, and Daddy visited me on his way home from Erie, Pennsylvania. He drove all the way there and back today, that’s about 14 hours of driving!