Day 11: Changing of the Guard, Saturday March 24, 2012

This is Mickey Moore signing in with today’s report.  Patti flew back to Utah this afternoon and I’ll be doing my best to support Ashley and Scott through the upcoming week.  Patti’s support has been not only a tremendous value but has taken a tremendous effort, and we hope she is able to re-charge.  Going forward, Patti’s and my intent will be to take turns here in Phoenix a week or so at a time.

Scott had a very restless night and successfully removed the IV from his hand and the inner sleeve from his trach.  There were some issues with the response time during the night by the nurses and Patti and Ashley have since had a conversation with the Charge Nurse to “clear the air”.  It was good to know that our expectations, which were not met, were reasonable and an escalation path determined.  It was also very helpful to have input from Robin Doctor who offered great context of our situation.  Once again communication is key.

One major outcome of this last meeting is that we now have a list of all prescribed medications, both scheduled and as-needed.  This way we can double-check with the nurses when they are administering the drugs.   Although the nurses have been very good about telling us what they are giving him, we have had no reference as to whether it was ordered.  Now we do.

Patti and Ashley have been sleeping in Scott’s room every night and for now Ashley will continue to do so.  I have been able to leave for the night and each time I return some 12 hours later, Scott shows marked improvement. I’ve mentioned to Ashley that she should also try sleeping at home just to see the change in 12 hours (nudge... nudge...) in the hope that she will find her own path to maintaining her level of health and energy.  I feel certain that just like Scott, Ashley knows when the time is right.   

This morning Scott sat in the med-chair for over two and a half hours.  He tired a bit and slumped down often but would help me on command to scoot back upright.  He worked very hard the entire time.  PT will be amazed on Monday if he keeps this up.

Scott is rolling onto both sides when active and beginning to recognize changes in his surroundings.  The day Respiratory Technician came in the room when Scott was sitting up and Scott immediately turned his head and opened both eyes at the Tech.

This afternoon he was so active and tired (all Moore boy’s ears turn bright red when tired) that we had the nurse give him a little tylenol and he went right to sleep.  I’m no expert but I swear that I saw evidence of deep REM sleep when his right eyelid began to flutter.  I hope that is a sign of additional neural activity that we have not seen to date.

One definite good sign is that he is urinating on his own without catheterization.  This is significant as his neurological system regains control of all bodily functions.

Ashley and I anticipate a very active and progressive week.  Scott will be a handful as he continues to gain more awareness.  We will do our best to provide a day-by day, blow-by-blow account through this week.

Carol and I thank everyone for all the thoughts and prayers.  We have just begun to support Scott’s challenge and are fueled by your love.

Mickey Moore