Hi Everyone,
Our little energizer bunny was wiped out tonight! She has been much more alert and demanding more stimulation. When she is not engaged, she exhibits the signs of the agitation stage in the Ranchos Los Amigos Scale. This is not a negative reaction. In fact it is a sign of further progress. For those of you who are not familiar with the stages of Coma Recovery, Stage 4 is the state of Agitation. The brain is still in a “fog” inconsistent with responses but emerging into clear consciousness. Typically the patient is angry, frustrated, irritated by any tubes, restraints etc. They are reacting to being trapped in a body they don’t recognize and frustrated with the inability to express themselves. As a result, they often are physically violent and exhibit inappropriate behavior (and language if they can speak).
When we were living in the rehab, this was the most difficult stage to watch. It was particularly difficult for the family. To protect the patient, the clinical staff would “mitt” their hands so they were unable to pull out any of their tubes, trach etc. The staff often would “tent” the patient’s bed. The patient was often disoriented and would climb out of bed thinking they were home, able to walk etc. The staff would “belt” the patient in their wheelchairs with the latch wrapped around at the back of the wheelchair. This was to ensure the patient couldn’t release their seatbelt.
Corey has not fully entered this stage but she is beginning to show consistent traits that lead me to believe she is on the threshold. This is another phase of recovery that is extremely challenging.
I am beginning to notice a pattern with Corey. If she is completely engaged in conversation, activities or exercise she does not exhibit any signs of agitation. If our friends visit and we talk “around” Corey, she begins pulling her hair, kicking and grinding her teeth. She has also begun to pull herself forward to what appears as if she wants to get out of her chair. The answer…stimulation! This past weekend when we were in NY with our family, she did not show any signs at all other than happiness and contentment. We didn’t have to use the suction machine for managing her saliva other than brushing her teeth. So now I’m on a mission to continue to draw outside the lines…
On the way home tonight I stopped at our local “teacher’s store” in Newark, DE. I used to go to this store to get the kids activity books to keep up with their school work during the summer months (Yes, I was “THAT” mother!) I purchased a series of cards with large color photographs for Nouns, Categories and Go Together’s. I also purchased a Dry Erase Board and large Alphabet cards. My plan is to supplement the activities of the school therapists to support their care plan designed for Corey. It’s my Homework!
Here is an example of how we will use these tools; we write a word on the Dry Erase Board; for example “Umbrella”. We put two picture cards on the board (Umbrella and Ball). As we point to the written word, we ask Corey to pick the appropriate card. Corey displayed 75% accuracy with this activity when working with the Speech therapist.
Corey I know that days like today will happen; frustrating, challenging and maddening. I keep thinking of the line from your essay; ‘sometimes when life hands you lemons you want to throw them back at the person who gave them to you’. You were spot on with that saying kiddo! When days like today seem to be overwhelming and you just don’t want to deal with it for one more minute, that’s when you absolutely have to seek something that is fun, inspiring, motivating or whimsical. It will change your perspective and lighten your mood.
Ironically, two people today reminded me of the perfect source for our next smile. Here is a hint; it will motivate you to keep working hard because of the happy memories it brings. It also highlights your sense of humor, your bright, creative, energetic nature and shows just how much fun you have with your sister Caitlin. The answer to the riddle? COREY BEATTIE DEFYING GRAVITY…remember that? You and Caitlin fooling around one day creating your own You Tube movie. I watched it tonight for the first time in a long time and I have to say, I smiled and laughed out loud…again! You are still that whimsical crazy kid coming up with goofy activities to keep yourself entertained on a boring day. Don’t lose sight of that. You are very present Corey…it’s hard to wait for your mind and body to come together but trust me; it’s happening! We will continue to watch reminders of “what was” and use it as any other tool to push your recovery towards “what is even greater” today. I love you! XOXO
www.youtube.com (search for Corey Beattie Defying Gravity)