Monday, October 23, 2000
Today was very exciting! I was taken off the ventilator for about four hours and did great breathing on my own. The doctors gave me some medicine (they said it is kind of like caffeine) to help boost my breathing activity. In fact, I didn’t really need to be put back on the ventilator, but the doctors didn’t want to wear me out too much. When they took me off the ventilator, the doctors put a mask over my trach that gave me some extra oxygen and moisture. The mask is something that I will have at home to use when I sleep at night and take naps. It will help to keep the air that I breathe warm and moist.
Because I was working so hard at breathing on my own, I slept through the entire day. The nurses told Mommy that I woke up a few times during the day and this evening. But, every time Mommy and Daddy were visiting, I was snoozing!
Every other night I get a sponge bath and get weighed. My last charted weight was 3.8 pounds. I’m really packing on the calories now that the doctors have increased my milk intake even more to 15 cc every three hours. It’s a good thing I’m getting a bath tonight because my feet got really stinky in those warm booties. Daddy thinks the Michigan bootie made my foot stink worse than the one that had the Ohio State logo!
I get really hot and sweaty in my ortho board too. The material it’s made out of really heats up under my bed warmer. Mommy and Daddy wish I could get out of the ortho board. It will probably be at least a couple more months before that happens though.
This afternoon, Mommy and Daddy met my pediatrician. He lives close to our house and will be able to take care of all my basic vaccinations and check ups. He knows lots of doctors at Beaumont Hospital and Children’s Hospital of Michigan, which will be good for second opinions about treatments and surgeries.
One of Daddy’s colleagues came to see me tonight. He lives in Indianapolis and comes to Detroit frequently. Tony has three children. His youngest son has a feeding tube, like the one that I will probably have. Mommy and Daddy learned a lot about what taking care of a feeding tube is like from talking to Tony.
Another day of presents! Today I got a stuffed kangaroo and some books from Daddy's work colleagues. I am also building up a great savings account. My Great Grandma and Grandpa Winters sent me $100. Mommy and Daddy are saving all of my cash donations to either start my college fund or buy medical supplies.