NICU Diary Day 63

Friday, December 08, 2000

This week ended on a MUCH better note. Orthopedics took me down for flexion/extension scans of my neck, and they concluded that it's safe to remove c-spine restrictions! HOORAY! I was immediately sprung from my ortho board, and Mommy and the nurses all did a happy dance! (scroll to bottom of post for more pics of the brace)

When I got back to the NICU a nurse laid me on my right side, which shocked me. I've never been positioned on my side before! I wasn’t sure what to do, so I just looked around while the nurses and Mommy laughed at me.

Daddy came later and held me without anymore worry about my neck. He and my night nurse also changed my trach ties, which was much easier now that I’m out of the brace.

I was originally going to have an ultrasound for the flexion/extension test, but the doctors decided that it wasn’t going to work out. Plus, my nurse refused to let the radiologist move my neck in ANY direction without the attending orthopedic surgeon present. So, they went back to the original plan and took me down for X-rays.

Mommy spoke with a senior orthopedic resident after the x-rays, and he said they will still follow me to watch my neck and for developmental scoliosis due to my hemi vertebrae. I will probably see ortho again in about a month.

Mommy went shopping after she celebrated with me. She bought a stroller and car seat. One of the discharge nurses who helps parents organize supplies and equipment for complicated cases like me, is going to meet with Mommy and Daddy on Sunday. She will let us know if the stroller will work to carry all of my equipment.

The new ride is a double stroller—one side for me and the other side and underneath basket for everything else (ventilator, oxygen tank, feeding pump, suction machine, and trach supplies). After they put it together tonight, it seemed like a bit of overkill. But, I do indeed have A LOT of equipment that has to go everywhere I do.

Once my equipment is set up in a diaper bag and organized on a stroller, the nurses send us on field trips around the hospital. Before I'm discharged we will all stay at the hospital hotel for a weekend. This will be a chance for Mom and Dad to be on their own with me but with help nearby.

An equipment rep came to inspect our house this morning. He said that my room will be fine to house my equipment needs. He suggested we purchase a generator, just in case we are out of power for several days. All of my equipment runs on battery back up, but a generator is nice in case we have a nasty storm and can’t get anywhere to “charge” everything.

He told Mommy and Daddy to send the utility companies and 911 a letter informing them of my medical needs. This will put our house on priority status during outages. Equipment will be delivered to our house, and a rep will make sure it's installed correctly and that we know how to use and clean everything.

I'm definitely getting closer to going home, but the insurance issues are a long way from being resolved. Mommy will be talking to our attorney this weekend. The biggest issue for my discharge is still home nursing care, and we are working as fast as we can to get that resolved!