Updated: Jan 15, 2019
Friday, November 10, 2000
Hooray! Today I graduated to a “big boy” crib. When Mommy came to visit, I was sitting up in my crib all wrapped up in blankets with my beanie babies and other toys around me. The nurses also had the new CD player in my crib and a mobile for me to watch. I really like the new crib because it’s so roomy. Mommy thinks I look like Sweet Pea from the Popeye cartoon because I’m so tiny and dressed in a little green gown.
This afternoon I had speech therapy while Mommy held me. The speech therapist thinks that I'm doing really well with sucking on the pacifier. The major hurdle for me is swallowing. I’m not doing much of that, and I definitely need to add that function to my repertoire before I can try to take a bottle. The speech therapist doesn’t see any signs of me having an “oral aversion” though, which will make working with me much easier.
I was awake this morning, but slept for almost the entire afternoon and evening. I was pretty exhausted from my “breathing sprint” today. The doctors had my ventilator on “full pressure support” for eight hours today. They are weaning me off the ventilator by doing these “breathing sprints” a little more each day. Yesterday I went four hours. Today I made it eight, and tomorrow they will try for twelve. The goal is to get to 24 hours of full pressure support on the ventilator. Once I make it that far, they will take me off the vent for a few hours at a time until I am completely on my own. I should be able to make if off the vent much easier by going slowly like this. My lungs are very strong, and I am much bigger than the last time they tried to wean me.
Mommy and Daddy left a little early this evening because I was so tired from working hard today. They had a nice dinner, and Mommy got to tell Daddy about all the conversations she had with our insurance company. She spent a lot of time this morning talking to my case manager, an adjustor, and a benefits specialist.
In addition to Daddy’s insurance, I qualify for supplemental insurance called “Children’s Special Healthcare Services (CSHS). CSHS will pick up extra things that I might need, but we have to decide if it is worth the expense or not. Mommy is finding out that she actually has three new careers: mom, nurse, and insurance specialist!!!!
Mommy and Daddy are getting very impatient to take me home. They know how to take care of me now better than a lot of my nurses do. It's very hard for them to say goodnight and leave me in the hospital, especially if they aren’t comfortable with my nursing assignment for the evening. I want to go home too so that I can see my room, play with all my toys and books, wear all of my new clothes, and play with Divot. Divot will really be surprised to meet me!!!!