NICU Diary Day 97

Thursday, January 11, 2001


I was so spoiled today! Wendy took care of me all morning and then Grandma and Grandpa D. came and held me the rest of the day. I LOVED sleeping on Grandpa D.’s belly!


Mommy and Daddy spent most of today working with hospital staff preparing everything for my discharge next Tuesday. Pediatric surgery checked out my g-tube site, and they gave Mommy and Daddy information on care and cleaning. They also gave us the product numbers we need for ordering g-tube supplies.

The residents are busy scheduling all of my first follow-up appointments, and Mommy is trying to push my Medicaid application through the bureaucratic system. Stacey, one of my discharge nurses, is who contacted the “mystery man” about expediting the application. He left Mommy a message at home and said that he had contacted the supervisor of the office where my application is and requested that it be expedited. Mommy is calling the caseworker tomorrow to see if it was processed.


Mommy talked to an Oakland County Public Health Nurse today. She recommended state & county programs like Early Intervention, which I'll be enrolled in by the hospital. She also suggested we place a job posting with Oakland Community College Nursing School, which isn’t far from our house. There might be a nursing student interested in taking care of me occasionally.


The discharge team is working to get my feeding equipment delivered so that Mommy and Daddy can learn how to use it. They're also working with my Case Manager at our private insurance company to see if they'll provide some home nursing hours. We have up to 400 hours a year in our policy, but it can’t be used for “respite” care. The hours are only approved for “skilled nursing duties.” So, we’ll see what comes of that (insert eye roll)!


Mommy and Daddy are getting very excited about my homecoming. They have a BIG list of things to do this weekend in preparation. Mommy is putting together a long “honey do list” for Daddy!!!


P.S. My old bunkmate, Adam, is doing much better. He is still in Room 2 but is now off the ventilator. Keep those prayers coming!


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