Wednesday, October 25, 2000
I was off the ventilator again today. The doctors wanted me to be off for twelve hours, but I was having a hard time keeping my feedings down and also started to struggle a little with my breathing. So, they put me back on the ventilator after about seven hours. They are hoping that being on the vent will help me to digest my food a little better. I was throwing a lot of it back up!
My trach ties were starting to smell pretty bad by late this afternoon. The nurses said that I probably just got too tired. They said that being off the ventilator for me is like doing a really hard aerobic workout. Mommy and Daddy think that I will do better tomorrow after having a little rest today.
I had my eyes open a lot this afternoon when Mommy and Daddy were visiting. I’m getting really wiggly and am tired of lying in this brace. I’ve grown so much that the techs are going to make a new board very soon. I’m almost too long for this one already. I have also discovered that I can pull the vent off all by myself. Boy does that make the alarms sound!
Mommy and Daddy did their first trach change on me today. The airway nurse guided them through how to do it. They cleaned around my trach, put in a new trach, changed my ties, and cleaned the trach that I was wearing. Mommy put my new trach in. It was the first time that she saw my stoma (the hole in my neck), and she could see that I have healed really well from surgery.
Mommy and Daddy also had an infant CPR class today. Mark, the instructor, gave them a private class designed specifically for CPR on infants with trachs. Mommy and Daddy are going to be carrying my “Go Bag” with them everywhere. Scissors are especially critical since I might need my trach ties cut in an emergency. We all hope that won’t ever be necessary!
Mommy “chatted” with several women on the internet last night. They all have kids with Goldenhar Syndrome. The support group has chat sessions every Tuesday and Thursday evening. She really enjoyed hearing about their kids and how well they are doing. They gave her a lot of good websites to check out and recommended some good books to read. She will probably be talking to them a lot in the future!