Friday, October 20, 2000
This morning Mommy and Daddy had “trach training class.” Daddy suctioned me and Mommy used the oxygen bag for the first time. They also cleaned around my trach and changed my ties for the first time. Changing my ties is a big ordeal and takes a lot of people to help. One person lifts me, another person wraps the ties around my neck, and another person holds the trach and ventilator in place. My trach actually came out by accident when all of this was going on, but the airway nurse got it back in place without missing a beat! Everyone is hoping that I won’t have to be in my special ortho board for too long because it certainly makes everything a lot more challenging!
MI vs OH Fan
The nurses had a little fun at Daddy’s expense today. This morning he “casually” mentioned that he was a Buckeye fan. So, one of the nurses (whose daughter is twelve and has a trach), went down to the gift shop and bought me some Michigan Wolverine booties after Daddy left. I wore them all day and still had them on when he came to visit this afternoon. I have a feeling that I will be getting some new booties very soon! Mommy says to leave them on because everyone will take better care of me if they think I’m a future Wolverine. Daddy is still in a little bit of shock that the first thing I ever wore had Michigan on it!
Ventilator & Airway Update
My ventilator lung pressure was turned down another notch today. Every day they are making me work a little harder at breathing on my own. When I get fussy my oxygen level goes way down. That makes everything start beeping and the respiratory techs have to rush over and check things out. I usually recover on my own once I settle down a little. It scares the heck out of Mommy though!
I got extra oxygen a few times today when I didn’t recover on my own. This afternoon I was really fussy because I had some air in my tummy. I passed a little gas, but that didn’t get all the air out. One of the nurses came over and suctioned the air out of my NG (nose) feeding tube. That made me feel much better—for about two minutes then I got fussy again.
Mommy changed my diaper and thought that would make me feel better. It helped but not for very long. The reason I was really fussy was because I had some extra gunk in my trach tube. I felt much better after Mommy suctioned it out. Mommy thinks I look really funny when I’m mad. My face gets all read and I make little fists and start kicking. She thinks that I got her temper!
C-Spine Orthotic Brace Status
The ortho guys came back to check on me again today. They took away my board and “tweaked” it some more to make extra room for my right ear. I would say that it’s a pretty near perfect fit now. They haven’t designed anything like this before and wanted to take some pictures of me in it. One of the techs even wanted his picture taken with me!
Visitors & Gifts
My Great Uncle David and Aunt Nancy came to see me this afternoon. They got to watch when all the action was going on with my ortho board. They brought me a really neat outfit with Mickey Mouse on it. I have to be a lot bigger to wear it though. I also got a present from my cousins Joseph and Katie today. They sent me a really soft elephant and baby blanket. Everyone is really spoiling me, and I love it!
I am definitely growing and bulking up. I weigh 1.53 kilos, which is about 3.37 pounds. The doctors increased my milk intake today from 4 cc every three hours to 5 cc every three hours. I’m growing like a weed! I also got my first pacifier today. It is a special preemie pacifier that’s vanilla flavored. The nurse and Mommy put it in my mouth for a little while this morning. I sucked on it a little bit, but mostly drooled all over my mouth. Daddy also tried to get me to suck on it a little bit this evening. It's challenging because of my cleft palate.