Thursday, January 04, 2001
I'm having a fantastic day. Forty-eight hours off the ventilator and still going strong. I've even gained weight with the increased formula. I'm now 6 poinds 7 ounces, and I look like a giant in the NICU!
Mommy spent a fun afternoon playing with me, and I took a short catnap in her arms this afternoon after my 2:00 feeding. Daddy came tonight with a special visitor. Tony, from Indianapolis, was in town on business and came by to see us. The last time Tony saw me I was in Room 2 in my open bed. I've grown quite a lot since then. Tony visited while Mommy and Daddy gave me a bath (which I hate) and did my trach care. After I was all cleaned up, Tony held me for a while. I decided that he was pretty cool.
My orthopedic X-rays came back showing continued ossification of my vertebrae. I will follow up in about 3-4 months for more x-rays.
We still don’t have very good news on home nursing. Mommy called the insurance case manager today. They've contacted 32 agencies and none of them have staffing available at this time. This situation pretty much sucks if you ask me!
We are in quite a dilemma. If I go home without a nurse available, the insurance company will never authorize nursing care. They will argue that Mommy and Daddy can take care of me without help. I really want to be discharged though. The hospital isn't a great place for an active baby like me. Going home without any help is probably not a good idea, but it’s very hard for Mommy and Daddy to keep waiting.
Keep your fingers crossed that I continue to do so well off the vent!