Matt had profound expressive aphasia—the impaired ability to speak and write, and impaired receptive aphasia—the ability to understand spoken and written language. Recently, 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 bowel and bladder function can significantly impact independence and everyday life, it is rarely discussed. 

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.

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.

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.