Augmented Communication - part 1
I feel like skipping tonight! And it's not just the spring weather in St. Louis. Nathaniel participated in a two hour augmented communication study at St. Louis Children's Hospital today and it was AMAZING!
Let me back up and give some necessary info.
We know Nathaniel will be non-verbal for a number of years at least. His trachea abnormality prevents him from passing air over his vocal chords. As a side note, yes, that means Nathaniel does not make an audible cry. He cries like all babies, but the only sound is an increased respiratory rate. Everyone knows he needs a different way to communicate. The go to option of course is speech therapy.
On Private Duty Nursing and Glass Houses
Nathaniel came home from the hospital with round the clock private duty nursing. I would love to write a blog post on how smooth Nathaniel's second first night home went. But it didn't. We were up all night fixing problems the night nurse was creating. At two in the morning I asked her to sit in the living room. She had told me she was afraid to drive in the dark and I couldn't turn her out in the middle of the night.
Day Twenty-Three: Welcome Home Again
A full body wiggle and smile greeted me every day
when I arrived at Ranken Jordan. Today we were going home!
Day Fifteen: Back to Children's Hospital
The staff at Ranken Jordan determined a second goal prior to discharge was for Nathaniel's trachea to be evaluated and stabilized. Nathaniel had been scheduled for a bronchoscopy in July prior to placement with us, but the test was canceled due to a fever. It was rescheduled for the first week of August, which ended up being our third day at Ranken Jordan. At 5 p.m. the night before his Children's Division case manager canceled the test because there was no court order on file for him to receive general anesthesia. The test was rescheduled again.