Day 6 - December 27, 2012

Today has been a discouraging day. Dad has been pretty much asleep all day long with just a few moments of open eyes. Overnight, we had a fabulous nurse, Julie who really cared for Dad. She played music to soothe him, talked with him to keep him calm and tried to keep his sedative to a
minimum so he could get the best results possible for his EEG.

This morning he had an EEG. It told us that yes, he has brain activity, but that it is very slow right now. He hasn't had any seizures that they can tell or strokes that they can tell. During the neurologist's exam, I sat in and got to watch.  It was so frustrating. He was so completely snowed under with medication.  The nurse was supposed to take it away an hour before the neurologist came but instead only turned it off 20 minutes before.  He would not open his eyes. He would not move his limbs.  He was completely unresponsive to anything we said or did.   He was still sedated and asleep.  He did none of the things that he was doing yesterday.

After exam, we had a family meeting with the neurologist and doctor to hear their report.  Without surprise, the neurologist reported that the clinical exam was consistent with the brain wave speed he was seeing on the EEG.  Then we had a discussion with his doctor.  He tried to get us thinking in a new direction.  We are getting past the point of expecting that he is just going to wake up and be back to normal Clarence without more effort.  We are trying to wrap our arms around the fact that our Plan A is not the most likely outcome.  We move on towards Plan B, which is to prepare for a longer term rehabilitation.  He suggested that we consider a surgery to perform a Tracheostomy and place a feeding tube into his stomach.  This will allow him to be more comfortable and not have the respirator tube and feeding tube in his mouth and down his throat.  This has been very uncomfortable for him these past few days and causes him to gag and cough.  These will also help to transition him over to a separate facility that will care for him and hopefully help work with him to get from his current state to a point where he can participate in rehabilitation therapies. 

The rest of the day, we all visit with my dad and try to keep him calm.  He is a lot of work for the nurses.  He moves and moves and moves in his bed so much and is a really strong guy.  He has been moving his legs through the air almost as if he is on an invisible bicycle, or like he is performing stomach crunches by bringing his knees up to his chest.  As a result of this moving, he scoots himself down in the bed and then his back is where the bed bends which is uncomfortable.  Then he will try to sit himself up more, or slide to one side or another side.  In addition, his legs are so long that his feet will hang off the end of the bed.  Plus when he slides down in the bed, even with his hands restrained, he is closer to his vent and feeding tube and could accidentally pull those out.  Because of all of this, the doctors and nurses want him sedated so that he is not a danger to himself, but again as I said above, when we sedate him, we cannot be working with him on building the connections that he needs in his brain to heal and put things into place. 
So we continue to wait and see and hope that the surgery tomorrow will allow him to be awake and less agitated.