Updated: Jan 15, 2019
Thursday, November 02, 2000
Mommy and Daddy had a trach training session this morning. The airway nurse brought a different trach that she thought might work better until my new custom one comes in next week. The new trach is the same size as the one I got yesterday, but it has a flexed end. The flexed end extends out away from my face, so the ventilator doesn’t rub against my skin anymore. It's a lot more comfortable, and everyone can see my face better now.
The nurse helped Mommy and Daddy change my trach. This week it was Mommy’s turn to take out the old one and Daddy’s turn to put in my new one. They also cleaned around my trach area and changed my ties. All of the nurses say they are doing really well with learning my trach care. Sometimes I like to help them out by getting my hands in the way!
New Month = New Rotation of Specialists
I have a new staff of neonatalogists that are taking care of me this month. The doctors rotate patients every month in the NICU. They decided I should have an EKG to check my heart for congenital defects related to Goldenhar Syndrome (GS). I had the EKG this afternoon and everything looked really good. The chief of pediatric cardiology came by later to have a listen to my ticker. He said that everything sounds great with my heart and that Mommy and Daddy (especially Mommy) shouldn’t worry about anything.
One of the neonatal physicians said that if the Cheif of Cardiology gave me a good report then everything is definitely OK! U of M has one of the most respected cardiology centers in the country and the head of cardiology is “THE MAN.” We've also heard that U of M has one of the top ten pediatric ENT centers in the country. Yeah for us!
Visitors & Pranks!
I finally got a little rest this afternoon. Grandma and Grandpa Dankelson came to see me today and were really surprised at how much I’ve grown. They thought I looked really good and were very glad to see me. Since I was so tired from all the morning activities, I didn’t open my eyes too much. I only gave them a few small winks. I figure that will keep them in suspense enough to come back and see me again!
I keep forgetting to mention that the nurses and Daddy are still having fun. They took a bandana that Mommy keeps in my bed (it smells like her) and wrapped it around my head to make me look like a “Harley Dude.” Then they took a Polaroid picture and wrote on it, “Hey Dad, where’s my Harley?”
Daddy got some revenge for putting those Michigan booties on me. One of the nurses has a daughter going to Michigan State next year, so Daddy gave her a shot glass. He said her daughter's gonna need it to “fit in” at MSU. Apparently it has a reputation for being a “party” school.
I’m too little to know about these things just yet. I'll be a perfect angel when it comes time for college-- even though I don't think Daddy was!