Day Seven - Saturday

November 27, 2010: It's 12:13 AM and I just left Brandon's room. I had gone back to drop off and pick up some things. When Leanne and I left at 7:00 PM - shift change, Brandon was flaccid, on sedation and had been so for some time. Normally I return to the room at 8:30 once shift change is over. However, there were errands to be run and repairs to be done to the motor home and time is getting short when I will have to return to work to help offset the costs of our new financial challenge.

I finally returned just before midnight. I wanted to check on Brandon, drop off some things we had purchased for him and pick up his cd's to put them on a MP3 player in order to provide his room with continual music that he would choose.

When I entered the room I noticed a few changes. Brandon was no longer breathing by himself. He was back on the respirator. The feeding tube was gone and there was an additional blood tinged drain coming from his mouth. The nurse stated that he had extubated himself shortly after she came on and didn't think he had been sedated or given enough pain medication. After the unintentional extubation, they had left Brandon to breathe on his own to see what he could do. She stated he was unsuccessful at sustaining respiration and was place back on the respirator and sedation along with the addition of a Fentanyl (pain med) IV. She also stated that the feeding tube loss was not a significant event due to the fact that it was not in the correct location. Somewhat strange since he spent an hour having the feeding tube replaced and confirmed about eight hours earlier.

What is it about nighttime. I sit with my son for 10 hours of the day shift and normally at least four hours of the night shift and nothing drastic happens. At least nothing that cannot be controlled with reasonable effort. At night when I am out of the room, the staff tells me he beats them to a frazzle. This latest episode leaves us to wonder what insult has now been added to his injury.

It took less than four hours to go from elation and promise to devastation and despair. Welcome to the roller coaster ride.  All of us diligently and at times not so patiently wait for Brandon to wake up, to acknowledge and hold his family in his arms, and fulfill his role as husband and father. We don't ask for much, do we?

Why do most of the good advances of the day have to end and suffer set backs with the setting of the sun?