Sunday, December 10, 2000
We had a fun day. The nurse unhooked me from all of my monitors, and I was a completely free man! Daddy took me for a spin around the room; he thought it was really cool to walk around with me unattached. Mommy had fun holding me too, and they both took a lot of pictures. Someone found a bouncy seat for me to hang out in, and I feel asleep in it because I was so tired from playing.
Daddy learned how to put my NG feeding tube in today. He did a better job of getting it down my nose than Mommy. She said that’s good because now he can do it instead of her!
Mom and Dad are slowly checking off everything they need to learn before I go home. They will start learning about my home ventilator this week, and we might all stay at the hospital hotel next weekend. The hotel is attached to the hospital for families to stay close. The three of us will be completely alone for the first time.
We got a good grade on the double stroller and diaper bag. The discharge nurse is going to take us on some hospital field trips once my portable equipment arrives.
Mommy and Daddy met with the discharge nurse who helps with complex home-care needs. She gave them lists on how often to clean and dispose of my medical equipment and a list of supplies to include in my diaper bag. She also created a daily schedule for my home care. Discharge planners have a lot of ideas on how to organize supplies and set things up. One will be at our house to help organize everything after its all delivered.
Mark and Peggy, friends of ours, came to visit this afternoon. Peggy’s daughter delivered her baby girl at 32 weeks, and she was also in the NICU for a few days. She's now on the 5th floor and doing very well. Once she's strong enough to take a full bottle, she will break out of here. Peggy enjoyed holding me, and I liked it too!
We haven’t heard from the attorney yet, but things are definitely moving forward for my discharge. The hospital will not release me without sixteen hours of care per day for the first 1-2 weeks. After that, the doctors have written that I should have at least 8 hours of care daily. I sure hope they find a nurse so that I can come soon. Mommy and Daddy are guessing that I might be discharged on New Year’s Day.
P.S. I got a new sleeper outfit and a really soft boy doll from my neighbors today.