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The Early Days
In our absence, while Mike and I were out of town celebrating Megan’s graduation in North Carolina, the different therapists laid the foundation, preparing Matt to tolerate the intended progression of services safely. With few exceptions, Matt had been bedridden for four weeks in the ICU. Such an extended length of time lying in bed can interfere with the body's normal mechanism for regulating blood pressure, known as orthostatic hypotension. If attempts were made to initiate standing and walking without preparation, his blood pressure might drop suddenly, followed by dizziness, lightheadedness, and potential fainting. Therefore, he was strapped to a tilt table, and its incline angle gradually increased towards an erect standing posture over several days. Having shown no signs of distress, he was advanced to 20-30 minutes secured within a standing frame for the next two to three days. Although Matt had little ability to comprehend or participate, during these sessions, the staff encouraged him to hold his head up, follow them with his eyes and head, and try to move his left hand.
By combining sessions with two or more disciplines, OT, PT, or Speech, they were able to support each other’s efforts and blend their expertise into one orchestrated purposeful activity. For instance, when PT had Matt on the Tilt Table, the OT tapped his left hand to open up, grasp a tennis ball, and release it. Another day, after lying on his side, OT rolled Matt onto his stomach over a large wedge. Speech therapy took advantage of the mechanical pressure that compressed his abdomen to force air out of his lungs. This produced anticipated grunts and groans—his first vocalizations—and a wide-eyed, startled reaction on his face. The therapist encouraged him to repeat these sounds and to mimic her as she mouthed words—culminating in a solo performance on her part.
Matt had profound expressive aphasia—the impaired ability to speak and write, and impaired receptive aphasia—the ability to understand spoken and written language. Over the past few weeks, we had begun to notice transient flickers of activity indicating brain synapses firing, though subtle and fleeting. For example, when asked, Matt could hold his fingers up briefly or grasp a tennis ball, which indicated that, at least in part, he could hear, process, and intentionally respond to some of what was being said. Facial grimaces expressed his awareness of physical stress and pain, as noted above, and occasionally, he opened his eyes or glanced over if he heard a familiar voice. On two occasions, he had looked intently into his dad’s eyes—as if grasping for something familiar to hold onto—anything to ground himself.
In addition to focusing on basic communication skills for Matt, the speech therapist addressed a swallowing disorder called dysphagia. Matt showed no reaction to ice chips placed in his mouth—no attempt to suck, maneuver, or swallow, nor did he respond when given something sour to taste. The ability to swallow and cough are prerequisites to drinking and eating safely without choking or aspirating food into the lungs. She meticulously attended to his oral care—cleaning his mouth with a moist swab and brushing his teeth because if, by chance, Matt aspirated, there would be less bacteria and a reduced chance of pneumonia.
Nursing and occupational therapy were involved in managing Matt’s urinary incontinence. Incontinence, a common issue after brain injury, is the inability to control urination or emptying one’s bowels, which results when the communication between the brain, bladder, and bowel muscles is disrupted. Matt’s bladder was completely offline—no communication whatsoever that he needed to relieve himself. Urinary incontinence affects 40% to 60% of hospitalized people after a brain injury, 25% of whom will still have problems at discharge, and a year later, up to 15% remain incontinent. Even though it can significantly impact independence and everyday life, it is rarely discussed.
We watched and waited for this and other signs of revival. Occasionally, we perceived something had stirred inside and escaped. The first week, Matt arbitrarily raised his arm once. Another day, his eyes followed a person’s movement in the room once. Next was a flicker of recognition when someone called his name or a new muscle twitched with signs of life once. There was no pattern, nothing consistent.
As in the ICU, Matt continued to be catheterized intermittently to empty his bladder because he couldn’t. Other interventions have included medication, diet, and adequate fluid intake. In mid-May, his distended bladder finally signaled its need to be emptied, and it did so. Matt wet the bed. It was an event worthy of celebration. Once this became a regular occurrence, staff would begin a bladder control schedule. I felt like chanting, “Go bed wetting!” But alas, as noted above, it wouldn’t be a one-and-done, quick resolution.
As is often the case after a stroke, gravity, in the absence of muscle tone, partially subluxated or pulled Matt’s right humerus out of the shoulder socket. To protect and minimize this gapping, the OT taped the joint to offset the downward pull until the desired muscle activity resumed. Arm boards with foam supports were placed on the wheelchair armrests to support and minimize the risk of swelling. In addition, he wore a splint at night to compensate for right-hand spasticity, or increased muscle tone and stiffness, that pulled it into an awkward position.
By the end of the first week, Matt was deemed ready to begin the painstaking, slow, and arduous process of learning to walk again. I use the term walk loosely. Initially, he was a bystander more than a participant, a marionette being manipulated by others—simply going along for the ride. The staff did all the work. He was buckled into another contraption called a Rifton Tram. This suspension frame on wheels supported his body weight, held him erect, and enabled the therapist to replicate the normal walking pattern by advancing one leg while simultaneously preventing the other from giving way as it bore weight—alternating legs step by step. Even if Matt had been able to cooperate, he was so thin it didn’t seem possible he had enough muscle power to move his legs. Ace wraps held his feet at 90 degrees to protect his toes from catching or dragging. A rubber tubing anchored to each ankle extended through the tram frame and out the front, where a second person assisted by pulling the advancing leg forward. Hard to envision, hard to enact. It was a process to get everything ready—taking great effort to coordinate. The two-person team got their daily workout and then some. Walking three-quarters the length of a football field, or 240 feet, played out over the span of a TV show with commercial interruptions for rest breaks. And to brighten their day, they always had a repeat performance to look forward to each afternoon.
There were lots of hours in between therapy sessions waiting to be filled. As in the ICU, I jumped in with both feet and figured I could wiggle my way out if I stepped on anyone’s toes. Mike was more tentative about playing physical therapist and chose to involve Matt, as would a loving father and caring parent. It balanced our unique personalities and the ways we perceived we could best support Matt.
For my part, I daily stretched his arms and legs, massaged stiff neck muscles, and mobilized tight joints from inactivity. I looked closely for emerging muscle tone and glimpses of new activity. To stimulate the muscles, I provided biofeedback—tapping and rubbing the muscles or recruiting gravity to instigate a holding contraction. Matt was prodded to signal the muscle to contract as I moved the joint through the motion, such as triceps extension. Or, if I raised his arm overhead, he was asked to hold it up so that it didn’t fall and hit him in the face—and sometimes, the briefest of contractions might tighten before flickering out. I would then catch the falling extremity and repeat the process several more times until the muscle didn’t respond. It began to add up in observable ways two weeks into his stay. I upped the ante by reducing the assistance I gave his shoulder muscles and added resistance—a two-pound dumbbell to bicep curls and hand waves—unfortunately, only on the left.
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