NICU Diary - Day 6

Thursday, October 12, 2000

Today was much quieter for me. I was asleep all day recovering from the trach surgery. All of my vital signs continue to look good. The ortho doctors are working on my special board and my custom trach should be ready by early next week. Mommy and Daddy were the only visitors I had today because Grandpa Dankelson wasn’t feeling good. He and Grandma didn’t want to make me sick, so they didn’t visit. They promised they would be back soon though! The Hospital Deacon stopped by to check on me as well.

I was under the tanning lights today because I started to get a little jaundice again. My CO2 level has also been a little high because I had a leak in my respirator tube yesterday. My CO2 level was still a little high today, but my trach should help bring it down.

Mommy and Daddy changed my diaper tonight. I was peeing quite a lot which is a good sign that my kidney is working. I still haven’t pooped but the docs aren’t too worried about that yet since I’ve been on a lot of morphine. Morphine tends to shut your system down. Mommy and Daddy, however, are quite anxious to see me poop so that they know everything is working OK down there. Once my system starts working I will be able to have some of Mommy’s milk, which will help me to grow faster.

My genetics specialist stopped by and talked to my nurse today. Mommy and Daddy missed him but are planning to have a consultation to learn more about Goldenhar Syndrome. I am a pretty unique kid because Goldenhar occurs in only about 1 in 10,000 live births. Scientists still aren’t sure what causes it. The geneticist said that it happens about 1-2 weeks after conception.*

Mommy and Daddy left a little early this evening. One of my bunkmates, Brett, turned into an angel tonight. We all said a little prayer for him and his family. His Mommy and Daddy were very sad to send him to heaven.

*See National Organization for Rare Disorders for latest information

Read from the beginning - Pete's NICU Diary - Day 1