I wrote to Ian, asking what he thought about these possibilities and expressing my concern about how neurologically impaired Janel still appeared. He replied:
He has excellent recovery potential, but he needs time after such extensive surgery. I do expect him to recover really well.
We all agreed that Janel needed intensive rehabilitation, involving physical therapy, occupational therapy, and speech therapy, to maximize his chance of at least some recovery. But our initial proposal to bring him to Brigham had been contingent in part on him not needing rehab, back when I had imagined him as an ambulatory college student who would walk into the hospital and then walk back out after surgery. We had proposed having him do rehab in Haiti as a last resort if needed, but now he needed eight months of chemotherapy and radiation therapy, and he was too debilitated to travel to Haiti in the state he was in. What I had perceived as mere logistical bureaucratic hurdles to be surmounted when advocating for Janel’s care I now saw as legitimate major challenges I had been naïve not to consider more carefully. I was starting to feel like I had bitten off more than I could chew.
The cost estimate we received for a stay in a rehab facility in Boston was two thousand dollars per day, not including daily ambulance transportation back and forth to Brigham for chemotherapy and radiation. The hospital costs had already exceeded the initial estimate since Janel had needed three surgeries rather than one and had spent a month in the neuro-ICU, and we hadn’t even started chemotherapy and radiation yet. The Ray Tye Medical Aid Foundation had increased its contribution to support the additional surgeries, but we didn’t have any other sources of funding for the non-surgical aspects of his care.
The Brigham social worker involved in Janel’s care had been trying to find a rehab center willing to provide free care for Janel for a few weeks, but she wasn’t having much luck. She worried that part of the reason was a recent newspaper story describing a Haitian patient who had come to Boston for surgery after the earthquake and had been at a local rehab center ever since—for over four years. She thought this might have made local facilities wary of taking on another complex patient from Haiti.
Fortunately, our social worker was able to procure a hospital bed, wheelchair, walker, and bedside commode for Janel to use at Hermide’s house. Michelle and I thought we could find a local physical therapist willing to do a few home visits. I felt horrible that we were offering Janel a better-than-nothing approach to his recovery rather than the ideal level of care he needed and deserved, but we didn’t seem to have another option.
* * *
Janel didn’t react as I entered his hospital room during a quick lunch break between my morning and afternoon clinics. He was turned on his right side, facing the doorway to his room, his wide-open eyes gazing vacantly into nowhere. A daytime talk show played silently on the television across from his bed, the volume muted. The flickering light from the TV varied the shadows on his face. A light snow fell outside his tenth-floor window behind him. Gusts of wind between the hospital’s towers occasionally sent the snow blowing upward.
“Janel?” I asked half-heartedly. It had been a month since he’d responded meaningfully to anyone. Still, every day I tried. “Janel?”
Nothing. I watched the hypnotic upward-blowing snow for a bit until it started falling downward again—a hospital-room snow globe.
I looked back at Janel. His eyes were still fixed beyond me, looking through the open door.
“Gen nej, Janel,” I said, more to myself than to him. (“It’s snowing, Janel.”)
No reaction.
“Ja-nel!” I tried once more, slightly louder. I got no response and walked over to the sink to wash my hands and go back to work, my daily ritual complete. While I was washing my hands, I thought I heard him say “Wi” behind me.
I turned around. Janel was still lying on his right side, staring out the door, expressionless. Had he just spoken? Wishful thinking—I had probably heard some other sound from the hallway and imagined it was him. I went back to washing my hands.
I was about to walk out of his room but decided to try one more time to interact with him. I went back to his bed and leaned closer to him. “Janel, kouman ou ye?” (“How are you?”)
He blinked twice, slowly. Still gazing vacantly beyond me, he softly, hoarsely squeaked out, “Pa pi mal, no.” (“Not too bad, no.”)
He was talking! I couldn’t believe it. It was the first sign of higher brain function he had demonstrated in over a month.
“Janel, leve bra ou nan lè,” I asked, looking for more evidence that he was in there. (“Janel, lift up your arms.”)
He stared at me. Maybe I was asking too much, but I asked again anyway. “Janel, ale, an nou leve bra ou!” (“Janel, come on, lift your arms!”)
After a few seconds, he slowly raised his arms off the bed, then slowly placed them back down. They didn’t shake.
I beamed. Ian had said that Janel would “come around,” and Janel’s scans had looked fine, but seeing him lie unresponsive for weeks had been disheartening. It had become hard to imagine him waking up after that. But here he was, finally beginning to come around.
“Yes!” I said a bit too loud for the hospital setting, unable to stop smiling.
Janel’s nurse entered the room. “He pulled out his NG tube last night,” she said. The NG (nasogastric) tube is the feeding tube that passes up the nose, down the throat, and into the stomach. They are uncomfortable, and it’s not uncommon for patients to pull them out.
“That’s a good sign,” I said, still smiling. “Sounds like some purposeful movement!”
“He actually took in 300 cc by mouth yesterday with a lot of encouragement,” she said.
“That’s amazing news!” I said excitedly. Three hundred cubic centimeters is only about one cup. Not much caloric intake for a whole day. But the fact that he was awake enough to eat at all seemed like enormous progress worthy of celebration.
With each passing day, Janel spoke and ate a little more. When two physical therapists helped him stand and held him up on either side, he was able to take a few small steps. It was beginning to look like he was going to have a miraculous recovery beyond anything I could have hoped for after his discouraging course up to that point.
Highlighting Janel’s dramatic improvement, our social worker was able to negotiate two weeks of free rehab for him at a local facility. When the ambulance came to transport Janel to the rehabilitation center, it was the first time he had been outside of Brigham since his arrival six weeks prior.
9
The rehab facility that accepted Janel reminded me of the nursing home where my mom had worked as a nurse when I was a child—fluorescent lighting and linoleum floors, the acrid odor of Lysol competing with the pungent smell of urine, the muted murmuring of countless televisions tuned to stations the patients hadn’t chosen. It wasn’t the nicest facility in the area, but we were grateful for two weeks of free rehabilitation for Janel.
With hours of daily physical therapy, he began to make small strides. His coordination improved so that he could eat on his own. His balance improved enough that he could walk the length of his room with his nurse and physical therapist supporting him. He still didn’t speak much, at least not with any of us. But when we arranged a call between Janel and his mother in Haiti, he was more talkative than we had ever seen him.