Update: 10:00pm on 2/22

Thanks for all the wonderful comments today! We loved hearing from you and receiving more stories and messages to share with Forrest. We feel so loved and supported by our amazing families and friends.

Just over five weeks ago we were thrust into this journey without a road map or compass and with no real understanding of the bigger picture. We were living hour to hour in survival mode for the first few weeks. It's time now to try to share with you the big picture as we are coming to understand it. His incredible gains in balance and physical strength and his early ability to speak and write are remarkable blessings, but he has yet to fight his hardest battles.

Forrest continues to reach out to his caregivers and his wonderful sense of humor is intact. As he becomes more aware of his surroundings and more active, he is entering a stage that includes periods of increasing confusion. One example occurred today when he and I were exploring around the gym. Forrest wants to open all the doors, so we went through a door which led into a stairwell. He tried to go down the stairs in his wheelchair. I told him we couldn't go down the stairs in the chair but he was determined and whispered "of course we can, I'll show you." I had to physically pull him away from the stairs. We are learning that this confusion and lack of decision making ability is expected at this stage in recovery, and reminds us how important diligent oversight and supervision is.

"A certain degree of frustration and restlessness is a motivator and is a good sign at this stage," one of his Doctor's explained to us today. Unlike the movies and popular media, it's important to remember that individuals recovering from TBI (traumatic brain injury) don't have dramatic awakenings. Instead, with the support of medical staff, friends and family, they progress sequentially through increasing levels of awareness. TBI's are categorized as mild, moderate, severe, or catastrophic (remains in vegetative state). Forrest's injury, based on his initial coma scale, cat scans, and MRI's, was a severe TBI.

The Rancho levels are a common way of assessing the current status of a recovering coma patient. They range from 1-10, with 1 being non-responsive and 10 being the highest level of recovery. Despite his severe injury, it's important to remember that he's made an amazing recovery so far, beginning at Rancho level 1, and having progressed to level 5, while demonstrating some behaviors of Rancho 6. At Rancho 5 he shows certain moments of appropriate behavior and effective communication, but he is often confused and out of touch with the present situation.

Here are the symptoms associated with patients at level 5:

• Level V - Confused, Inappropriate Non-Agitated: Maximal Assistance
  
  • Alert, not agitated but may wander randomly or with a vague intention of going home.
  • May become agitated in reponse to external stimulation, and/or lack of environmental structure.
  • Not oriented to person, place or time.
  • Frequent brief periods, non-purposeful sustained attention.
  • Severely impaired recent memory, with confusion of past and present in reaction to ongoing activity.
  • Absent goal directed, problem solving, self-monitoring behavior.
  • Often demonstrates inappropriate use of objects without external direction.
  • May be able to perform previously learned tasks when structured and cues provided.
  • Unable to learn new information.
  • Able to respond appropriately to simple commands fairly consistently with external structures and cues.
  • Responses to simple commands without external structure are random and non-purposeful in relation to command.
  • Able to converse on a social, automatic level for brief periods of time when provided external structure and cues.
  • Verbalizations about present events become inappropriate and confabulatory when external structure and cues are not provided.

To see the levels he's come through and the challenges ahead of him, you can read more about the Rancho levels at http://www.braininjury.com/recovery.html. We've received requests for information resources. A great book we're reading is Mindstorms by John Cassidy. Reading these resources helps us understand his challenges and better support his recovery.

Forrest has made remarkable progress and he will make it all the way back to us. He will hit some really difficult times during his recovery and some days he will be discouraged. The more we understand the journey ahead of him the more encouragement and support we can offer.

Love,

Austin and Mom