Matching Hearts

It was dusk, 7 p.m., shift change. The nurses did 12-hour shifts. My granddaughter lay in a four-bed ward which was a step-down from the Pediatric Intensive Care Unit. I was sitting in the one chair available, looking out the window. Night was closing in. Plumes of smoke drifted upward from a tall chimney close by. It was a melancholy time of day, conducive to worry. Who would be on tonight? Who would keep Rachel (not her real name) safe while I slept? We had learned to wait, for shift change meant descriptions of medications and symptoms and orders, all transferred one nurse to the next. Best not to interrupt their flow of information. When ready, the new nurse would arrive, introduce herself, and immediately ask, “Is it all right to do your vitals?” Poor Rachel, it seemed like someone always wanted to do something to her. But on this evening, the nurse was unfamiliar, unusual. The way she came into the room felt different to me, as if she wasn't entering it so much as gently reminding us of her presence. Her movements were deliberate but relaxed, as if we were in some place other than a medically intensive unit. There was nothing particularly busy about her, although she clearly had many things to do. When she came to the bedside, time seemed to slow. She had an “old soul” feel to her, rather like my granddaughter, I realized later. Time had already slowed down considerably as she approached the bedside. Rather than starting with the usual routine, taking the vitals, she seemed to want to become acquainted. Her voice was mellow and musical, with a hint of an accent. “Hello, Rachel. My name is Madeleine (not her real name),” she said quietly. “I'm your nurse tonight. How are you?”

Eventually Madeleine did do the vitals, but she moved so carefully that Rachel's usual reaction of tensing up did not occur. Even putting the thermometer in Rachel's mouth felt invasive to her, but this night she remained calm and did not seem to feel assaulted as the blood pressure cuff tightened around her arm.

Next were the evening meds, often the most protracted and painful struggle of the day these weeks after her transplant. Rachel wanted to live, but dreaded what her body was putting her through. The more anxious she became, the less she could control her gag reflex, and she would throw up her pills. Some could be crushed and put through her nasogastric tube, but for medical reasons, Rachel had to swallow her anti-rejection pills. She would have to repeat them if they came up. It was a battle of wills, Rachel's wish to recover versus her body's reactions to what felt like invasions.

Madeleine brought the four pills nestled in their little white cup, and the process began. “You can choose which one you want to take,” she suggested. To Rachel's credit, she would always choose the most bitter-tasting medication first, to get it out of the way. But she could be slow, sometimes maddeningly so. Madeleine held the cup, patient. Slowly Rachel put her thin, bony fingers into the cup and fished out the first pill. Then she simply held it between her thumb and first finger. No movement. Madeleine held the water cup. No movement. Slowly Madeleine said, “You can do it, Rachel. I know you can.” Rachel looked at her, looked at me. She put the pill in her mouth and took a swallow of water. One down, and no choking. “Good job, Rachel.” Even though she was 13, having outgrown that childish comment, I knew it was important

Her movements were deliberate but relaxed, as if we were in some place other than a medically intensive unit; when she came to the bedside, time seemed to slow.

for Rachel to hear it. This transplant experience had been beyond excruciating for her. Rachel was only a week or two past the black hole of memory that had begun on the medevac ride as her liver was beginning to fail. She remembered nothing after that ride until three weeks or so after the surgery.

Madeleine gently coaxed Rachel to take the next pill, and the next, and the next. They all went down with no reflexive gagging. And she remained calm. This definitely was a special nurse and I knew I could relax and go to sleep in my room at the Ronald McDonald House that night. Rachel was in good hands.

After the pills and her nightly routine of washing her face and brushing her teeth and hair, it was time for Rachel's TAC, the gargle to prevent yeast from proliferating in her mouth and throat. The compromise to her immune system put her at risk for infection.

We had a routine. Before anything began, Rachel would start a particular music video on her phone, always the same one. The image was of a young man bound by chains, lying supine on a bed, singing. The words were about being held prisoner. This was eerily symbolic of what I imagined Rachel to be feeling, and I often wondered how she had managed to find a video that conveyed her situation so well. First she would turn the sound up as loud as possible. The music reached to the four corners of the room. The flimsy cotton curtains separating the beds/cribs muffled nothing. Neither the nurse nor I ever commented about how loud the sound was. Rachel had always had enough to contend with each day, and the TAC was sometimes overflow. We did not begrudge this expression of her emotions nor its potential impingement on other patients and their families. After all, we were in the same boat. Babies cried and we all bore it. Rachel cried in her own way with this video.

I would go to the water station down the hall, fill one plastic cup with water, and take another to serve as the “spit cup.” The nurse would bring the TAC in a syringe, squirting it into Rachel's mouth. She had to swish it around for a minimum of 30 seconds, the time negotiated between Rachel and the doctor. The taste of the TAC was horrible to her. Once Rachel began swishing, I would mark the time watching the second hand on the wall clock—exactly 30 seconds, no more. I would count down the last 10 seconds out loud, handing Rachel the spit cup immediately at the end of the time. Rachel would expel the TAC and take a big gulp of water. The ordeal was finished.

Afterward, I would ask Rachel if she wanted me to massage her feet before I left. If she did, I would slather lotion on and caress those feet as lovingly as I could. When she had had enough, Rachel put on her sleeping mask. I rucked her in, kissed her goodnight, and said I'd be back in the morning. The day was done. I gathered my coat and bag, hoping the babies on the unit who'd had open heart surgery would not cry that night, keeping Rachel from sleeping. As I walked out, Madeleine was charting, bathed in the pool of light at the nursing station. “Sleep well,” she said. “I hope it's an easy night,” I replied. I made my way to the first floor, and called a taxi, thinking about Madeleine. She seemed to be a nurse in the truest sense of the word, not merely a technician, nor just an efficient get-the-tasks-done kind of person, but someone who could sit and just “be” with a very ill young teenage girl. Again, I wondered who she was.

Rachel was lucky enough to have Madeleine assigned to her almost every time she worked. Madeleine always had the same effect on Rachel. Unlike many of the nurses, she rarely spoke about herself. I had no idea how old she was, if she was married, or if she had children. But I felt in my bones that she had a story to tell. One does not have the patience, or radiate the peacefulness that she did, without having endured hardship. Madeleine only worked nights. When Madeleine was her nurse, Rachel took to telling me to go home after her meds and nightly routine of brushing her hair and teeth and putting on her face cream. She preferred Madeleine to give her the TAC and massage her feet. So I went “home.” When other nurses took care of Rachel, I stayed. But Rachel let Madeleine take care of her. There was definitely a special bond.

Not wanting to pry, but still curious, one night I asked Madeleine why she worked only nights. “I have two little girls at home,” she explained. Madeleine happily showed Rachel and me pictures of two smiling preschool children. She was married and had a family. That was enough to know for the moment. A week or two later, I asked Madeleine about her country of origin, thinking of her accent. She was from another country, but had been in the United States for 20 years. She was a bit hesitant, careful to choose her words. “There was a war and my father was high in the government. It wasn't safe for him, so our family left, my father, my mother, my two

She seemed to be a nurse in the truest sense of the word, not merely a technician, nor just an efficient get-the-tasks-done kind of person, but someone who could sit and just “be” with a very ill young teenage girl.

sisters, and me. I was 12. We first went to the east coast, but after a year, we moved west. Jobs were easier to get.” I said, “Oh Madeleine, you must have had quite an adjustment as a teenage girl.” Madeleine warmed to the topic. “It was really hard. I didn't know the language, but I learned. I just kept at it.” I hoped Rachel was listening, for here were two stories of hardship, one past and one occurring at the moment, even if they were different stories. Maybe Rachel could glean some hope from another teenage girl. “But my mom and dad worked, and all three of us went to college. I wanted to be a nurse, and here I am.” Madeleine had to be skipping a lot, for I had worked with refugees who had also fled a war-torn country and I knew these stories were always much more complicated. But I didn't ask any more questions. It was enough.

At the time, Rachel was on formula feedings through her nasogastric tube. She was not well enough yet to eat solids. After 2 months completely off food, with only total parenteral nutrition for survival, even the formula was often too rich, and she could not keep it down. But she longed to eat “real food.” Madeleine said, “Tell you what, I will make your favorite meal for you and bring it when you feel better. I'd love to do that.” Rachel was excited. When Madeleine asked her what her favorite meal was, she replied, “Spaghetti and meatballs.” Madeleine swallowed, and said, “Well, Idon't know how to make that, but I'll learn!” The promise provided another glimmer of hope for Rachel that one day she would be well.

Rachel did get better, weeks and weeks later. Eventually she was transferred to another unit where the patients did not require as much skilled care. Madeleine did not work on that unit, but since all the units converged in a central hallway, we would still see her from time to time and visit. We knew she was caring for other ill children, knowing those children were very lucky.

Madeleine never had the chance to bring Rachel the spaghetti and meatballs. All of a sudden, a bed at a hospital closer to Rachel's home became available, and she was well enough to be transferred. It was exciting and hopeful, after almost 3 months of so many complications. Many arrangements had to be made, and we had less than 2 days before we left. Rachel was adamant. She must have a chance to say goodbye to Madeleine, the only one she insisted on seeing. So I sought Madeleine out, and she promised to come the next night.

The afternoon before we left, Rachel and I went to the gift shop to buy Madeleine a goodbye gift. I wheeled her down, and she carefully looked over all the possibilities. At last she chose a small red heart. Then she asked, shyly, if she could buy one for herself. I knew she liked hearts, and my heart melted for this child who had suffered, and was still suffering, so much. Of course I said yes. That evening when Madeleine had a moment, she came by for a last visit. She sat on Rachel's bed, full of advice and encouragement for Rachel, reminding her of how well she had done, how strong she was, and how hopeful her future was. Rachel pulled out the little paper bag holding her gift, and held it out to Madeleine. Madeleine was visibly touched. She opened the bag, exclaimed over the heart, and told Rachel she would never forget her. Rachel reached in her bedside drawer, removed her heart, and showed it to Madeleine. “See, I have a heart too. We are one. I will never forget you.”