Monday, January 01, 2001
Happy New Year! We've had a lot of visitors lately and haven't posted Diary entries. We'll catch you up on everything in this first entry of 2001.
On New Year's Eve, I celebrated all night with Adam, one of my bunkmates, and his parents. They brought in a TV, and we watched the ball drop in Times Square. I didn’t sleep much because of the party but also because I'm very fussy when I go back on the ventilator. The doctors are wondering if I still need to be on the vent at night. The dilemma is they don’t want too many things to change since we're fighting with the insurance company about home care because of the vent dependency. Because of those issues, they're trying to keep me on the vent until discharge.
Grandma and Grandpa B. came to see me last weekend. They brought A TON of presents. Grandpa’s truck was stuffed full of food and gifts, kind of like Santa's sleigh! It’s a good thing they got everything in the truck because otherwise Grandma would’ve had to ride on the roof all the way from Indiana to Michigan!
We're overwhelmed with everyone's thoughtfulness and generosity. I received several outfits, toys, and books. Grandpa B. gave me the gift card he receives from his work, and several other family and friends sent gift cards as well. My Great Aunt Tami printed out my Diary and turned it into a scrapbook with pictures and clip art. It's a really special gift. I also have a restored rocking chair waiting for me at home.
I was awake almost the entire day on Sunday when Mommy and Daddy and Grandma and Grandpa were visiting. We sat in one of the fourth floor lobbies and watched football all afternoon. Grandma got to change one of my poopy diapers and Grandpa held me for the first time. He didn’t get to hold me very long though because Grandma didn't want to share! I want to be held constantly, and she was happy to cuddle me all weekend.
I'm doing great with my feedings and am now completely back on my old schedule of every four hours. Mommy and Daddy are relieved about that and are happy that my g-tube site is healed. I was also lucky to have great nurses all weekend, especially with the holiday. Brenda, who is super nice, took care of me on Saturday and Sunday during the day and Alice, Connie, and Joyce each had me for an evening. Today I had a new nurse, Melissa, who was also very nice. Adam, my bunkmate, and I are getting spoiled because we have such great nurses that take care of us. We both like to fight for their attention at the same time!
We did have some bad news over the weekend. Montez, My bunkmate from Room 2, passed away last week. He had very bad lung problems and was on a lot of oxygen and ventilation support. Mommy and Daddy were upset to hear that Montez didn’t make it; he was a cute and feisty little guy. His Mommy and Daddy didn’t come to visit him very often, so my Mommy and Daddy used to sneak peeks at Montez when they were visiting with me.
We are bracing ourselves for a new rotation of NICU doctors. Mommy's already written a list of specialists she wants to meet with over the next week or so. She’s giving the list to my new residents so that they can set up meetings for her and Daddy. I sure hope we don’t get anymore ER residents!