The Three-Month Mark

Last Friday marked three months. As in Day 93. Two Thursdays ago was 12 weeks. Want to know the date for Day 100? November 19. That’ll be 14 weeks. Don’t ask about hours unless you want to see therapy schedules and read clinical notes. Care to know the day he woke up? The date his friends emptied his apartment? When he was taken off the ventilator? The day he started what drug when and how much of it? The time he crashed?

Facts thrown like pebbles on a path to be retraced later on; all details written down. And here we are, three months. It feels like something special should be shared to mark it, or perhaps a new theme procured. The only one really around though is that Gabe is just getting better. Change in his behaviors is evident in a matter of days, always evolving.  Below are some stories of getting of how his progress manifests, as well as two pictures.

It’s afternoon of Day 86 and we’re in the OT clinic after a therapy. Donna comes in, peeks in at some of the games/puzzles/toys kept in the three closets, and emerges with a set of dominos. We start out with a 1:2 and a 2:5. He connects those and then picks up a 3:5. Next he pulls a 1:6 and he puts that down. Four pieces connected, and three days later, he’s connected five and we play a game of Go Fish. It takes 15 minutes to play with 10 cards, but we play.

On Day 88, Donna and I wheeled Gabe out to the parking lot so I could ride my bike around for him. I did some figure-8s, then pulled up alongside and he immediately took the right drop with his right hand. I asked him different bike parts and he touched each one. Headset. Top Tube. Drop bar. When I asked him where the brake was. In my mind I thought, “brake lever” but said “brake.” Gabe heard “brake”, thought brake, and pointed to the actual brake. He dropped his hand below the headset and head tube and grasped the brake itself. Oh! I said aloud, “I meant brake lever!” In response he raised his hand and not only touched the brake lever, he pulled it.

For the last 3 weeks, he’s consistently responding to us, to questions, to requests; we’ve adjusted our behavior by offering a choice in our words. Something like, “Do you want to do your Speech homework?” and asking for a yes/no response, or through an activity board (essentially a matrix with different items he can select, i.e. “I’m tired,” or “Bed” to get back in bed). Last week, Days 96 and 97, a thought we were taking a step back, a fluctuation in cognitive recovery (to be expected). The entire day there was frustration written in his features. A downturned mouth. A furrowed brow. His answers were not consistent or did not come at all; there was an abundance of mumbled lip movement. That night I realized, “Whoa! Maybe he’s sick of communicating yes/no through his fingers.” True enough, he confirmed it the next day and since there is more action from his lips. Gabe isn’t at a point where we can read his words at all times, but a simple yes, no, good are discernible, as well as the answers to the auto-completion sentences he’s given by his speech therapists (i.e. “What do you put over your eyes to protect from the sun?” Sunglasses.”

Another integral part to offering him a choice between two things, is also giving him time to do something himself. He can put a toothbrush in his mouth, switch sides, and remove it to place in our hands. It just may take 5-8 minutes. It’s so easy to take control and get it done for him, but certainly that’s not enabling him to relearn it himself. So he receives watchful assistance as he rebuilds everyday activities we all do.

On Day 99, he and I had a wicked thumb war. The air smelt of brimstone as we battled that day. I pulled no punches. His thumb was lightening quick. Our arms tangled back and forth across the table. My thumb, puny beside his, was crushed twice and “Uncle!” was cried out.  Later, the arm wrestle was a draw.

Last week a lot of attention was paid toward that right arm and improving its range of motion. A new exercise crossed with speech and occupational therapy was invented, in which a 3- or 4-letter word is chosen, and each letter hung above his head. He looks up, and reaches up, up, up to take it and place it on his lap. In a matter of six days, he went from lifting his elbow 4 inches off the bed to stretching his arm out completely above his head. Now that effort is being waylaid into reaching across his body to grasp the bed rail so he can learn to shift his weight.

Yesterday, I came across a bottle of bubbles at a local variety store. Before our nightly reading, he signals “Yes,” when asked if he wants to see them now or tomorrow. As they fly across his chest and lap toward his feet, he reaches for them, catching the bubbles as they float. Quick rapid movements, like his thub darting back and forth during a thumb war. He takes the wand and holds it just right. He purses his lips in a perfect O and I blow through the wand. As you can guess, his trach tube is still in place. He alternately passes and fails blue dye tests, however he’s improving in his ability to swallow and it’s typical for a patient to have it beyond two to six months. The oral motor exercises given by speech therapy train his tongue for better control of saliva and consistent swallowing, so we keep working at those twice a day this past week. If you remind yourself that he has to retrain every muscle in his body, it’s pretty fantastic that in those seven days he can lick his lips, teeth, and reach up for his nose and down to his chin.

Last story—since November 1 the calendar is taken down every morning. The day, date, and year is recited, and then he’s asked to point to it. Since the First, he’s gotten it right each time. On the Eleventh and Twelfth, he pointed to the right date without being told what it was! Last week he received a day planner, which breaks the day up into 30-minute segments. We write his therapy schedule in it, a couple of homework exercises to do, schedule a shave, plan on checking out some pictures on the computer. Stuff to organize his day, and the planner is helping him visualize it all. He’s now looking at the clock, and when told the time and asked to point out where that is in his planner, he does it with ease. A reminder is given each day of where he’s at, what state he’s in, and why he’s here. He understands he’s in a hospital, though the fact that we’re California is lost. That fact really isn’t important in the big picture. He knows who he is and who we are, and he recognizes faces and names that are important to him. He’s certainly still foggy, and his short-term memory is shaky. He certainly has a short attention span.  But we’re learning exercises to improve these facets, and we read the signs on when he needs rest and when he can keep up, keep participating. Gabe’s putting forth an effort that would squelch that belonging to any human being I’ve met. He’s exceeded all medical predictions in the doomsday and silvering lining categories.