Complete absence of observable change in behavior when presented visual, auditory, tactile, proprioceptive, vestibular or painful stimuli.
Level II - Generalized Response: Total Assistance
Demonstrates generalized reflex response to painful stimuli. Responds to repeated auditory stimuli with increased or decreased activity. Responds to external stimuli with physiological changes generalized, gross body movement and/or not purposeful vocalization. Responses noted above may be same regardless of type and location of stimulation. Responses may be significantly delayed.
"So, what number can we expect today?" My aunt asks as she breezes past me into the hospital waiting room, taking a seat at one of the far chairs on the short end of the room, near the lockers.
"Ugh," I say falling into the seat next to her. "Unfortunately, he is a four today, its only noon and I am exhausted!"
"Your exhausted because you have to deal with him AND spend all this time with grandma" my aunt jokes.
We begin to giggle.
"Yeah, I guess," I say as I begin to knaw at my cuticles, " I just have all this homework and I can't think straight. I keep falling asleep in class and doing homework here is not as easy as it used to be," I said, leaning forward to rest my forehead in my hands, "He's so agitated sometimes, he yells and pulls at his tubes and the sitter is too afraid of hurting him, or getting hurt herself, so I have to hold him down until he's calm," I said shaking my head, "Not exactly making it easy to remember the Shakespeare I have to read or work on my biology homework."
"Hey, girl," my aunt says as she stands, "you know damn well that even without doing your homework you'll still pass the class. You're the brillant one in the family, remember?"
I smile, "Yeah, I guess," I say, standing to face her, "well let's get in there before he tears the place apart," I sigh and start towards the ICU doors.
It is now the beginning of September and my father has been in the hospital for four weeks. He has been rapidly, and painfully, progressing through the Rancho Los Amigos Recovery Scale. This scale is a generalization of healing processes the body and brain go through after suffering a traumatic brain injury. It is similar to developing again, from an infant state, only much more quickly.
Last week my father was playing with toddler toys, putting circles into their corresponding holes in a Fisher Price play cube. This week we are practicing writing down people's names and colors and having him point to the corresponding person or object. Sometimes he gets one right, sometimes he looks at the page, confused.
Other times he looks at the page and starts to yell or throw things. We just never know.
In addition to the cognitive development work my father needs, his moods change aggressively and rapidly. Day to day we never know what we are walking into when we enter his room. Will he be a three, where we think he is slipping backwards, perhaps back into a coma?
Level III - Localized Response: Total Assistance.
Demonstrates withdrawal or vocalization to painful stimuli. Turns toward or away from auditory stimuli. Blinks when strong light crosses visual field. Follows moving object passed within visual field. Responds to discomfort by pulling tubes or restraints. Responds inconsistently to simple commands. Responses directly related to type of stimulus. May respond to some persons (especially family and friends) but not to others.
Or will he be a more optimistic, yet exhausting level four:
Level IV - Confused/Agitated: Maximal Assistance
Alert and in heightened state of activity. Purposeful attempts to remove restraints or tubes or crawl out of bed. May perform motor activities such as sitting, reaching and walking but without any apparent purpose or upon another's request. Very brief and usually non-purposeful moments of sustained alternatives and divided attention. Absent short-term memory. May cry out or scream out of proportion to stimulus even after its removal. May exhibit aggressive or flight behavior. Mood may swing from euphoric to hostile with no apparent relationship to environmental events.
We just never know.
Arrangements are being made for my father to be transferred to a rehabilitation hospital. A step down from the "regular" hospital, now known as an Acute Care Facility, but a step-up from a nursing home.
We are told by the doctors and nurses that this facility can handle all of my father's day to day care and that they specialize in recovery with brain injury patients.
I am also told that as my father's guardian I will be fully responsible for approval of the facility and will be the contact person for them as they progress through his case management.
It all sound good to me. Of course it does, what do you I know better? I've never been through this before. I didn't know what my rights were or were not. I had yet to become a parent myself and already I was being ushered into making life or death decisions. It was all too much.
In hindsight I realize I had received some bad advice, some good...but in most cases I realized that with my father there was simply no way to know how things would go.
There was no barometer to measure his recovery against, no yard stick or pamphlet of information could prepare me for the horrible and amazing journey ahead.
I felt like an infant myself at times. Trying to find my way, make sense of what was going on around me. Wondering if this world was really my life or just my imagination.
I never knew that a few days from now the rest of the world would be turned upside down. I never knew that this horrific family tragedy would pale in comparison to the devastation that lie ahead for thousands of people.
I never knew.
None of us did.
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