Crash

Crash Page 5

by Carolyn Roy-Bornstein

  I got to know my patients intimately. There were children who came in regularly. Kids with cystic fibrosis had weeklong stays for pulmonary “clean-outs.” Children with sickle cell disease had recurrent painful crises where their little blood vessels closed shut, causing them pain similar to a heart attack but in their limbs and backs. Children with leukemia came in for evaluation of their fevers when their white blood cell counts were low and their immune systems compromised. I cupped my hands on their backs for chest physiotherapy. I held their hands during painful procedures. I cut their meat, measured their urine, cleaned up their vomit, dabbed their sweaty foreheads with washcloths, and spooned ice chips into their mouths. I knew their bodies inside and out. I knew their parents by first names, and they knew me.

  “Hey, Carolyn. Brought you a coffee. Black. Just the way you like it.”

  Every day, Jerel’s mom came to the hospital to see her son, a quadriplegic after a tragic diving accident. She amazed me. In all her family tragedy, she not only thought of me at Dunkin’s drive-through but also took the time to learn how I liked my coffee. Now that I was on the other side of the stretcher, I was not nearly so generous. I never once brought a nurse at the Brigham a cup of coffee.

  I liked the technical aspects of my nursing job as well. I loved calibrating the machines at the beginning and end of my shifts: the ventilators, the CVP lines, the intracranial pressure monitors. I was good at starting IVs, dropping nasogastric tubes into little stomachs, inserting catheters into bladders. Some procedures, like lumbar punctures, were done by the doctors, but a steady nurse who knew how to hold a child, bending his or her spine out toward the needle, opening the vertebrae just so, could make the difference between a successful procedure and a bloody tap.

  My last nursing job before I went to medical school was on the pediatric ward at City Hospital, then a teaching hospital. It was a very small unit, and I sometimes had to float to other floors when its beds were unoccupied. The pediatric residents from St. Vincent Hospital rotated through our unit regularly, and observing them as they wrote orders on new admissions, I would think, I could do that. I could anticipate everything. I knew that asthmatics would need bronchodilators and steroids. I knew that children with gastroenteritis and dehydration were going to need IV fluids. I knew that the child with leukemia who came in with fever and low blood counts would have blood cultures drawn and receive antibiotics to cover for possible infection.

  But what fascinated me was what I didn’t know. What did one do with the child whose diagnosis wasn’t obvious? How did one approach a mysterious set of symptoms? How did one even go about thinking about the problem? Where did one start? That is what attracted me—the medical mystery, the diagnostic dilemma. I loved the intimacy of nursing: the laying on of hands. I considered it a sacred honor to enter another human being’s personal space in the way that was required to be a good nurse. But the thrill of actually making a diagnosis pulled me toward medicine. Nursing had its intellectual challenges of course—there was always something new to learn—but the idea that I could solve a puzzle, diagnose a case, was irresistible.

  Making the diagnosis is still a very rewarding part of what I do. It is especially satisfying when I am able to figure out a child whose diagnosis has stumped or evaded even the specialists. There was the child with pertussis who presented to several Boston emergency rooms with a cough. They diagnosed him first with a cold, then with pneumonia. (His mother had forgotten to inform them that her son had not had all of his DTP shots due to a seizure when he was little—information that I, as his primary care physician, had at my fingertips.) There was the baby who came to me for his first visit after spending more than a month in a neonatal intensive care unit having his duodenal atresia repaired. One quick Ortolani and Barlow maneuver revealed an undiagnosed hip dysplasia. Then there’s my patient with multiple symptoms and seeing multiple specialists whom I diagnosed with an unusual brain abnormality called a Chiari malformation. The specialists are still trying to decide if this is the cause of his problems or just an incidental finding.

  Being a nurse first helped tremendously in medical school. While my classmates had to get used to talking to someone in a johnny, I had been the one to dress the patient in one. While they had butterflies in their stomachs, I held 23-guage butterflies in my hands, as familiar as silverware.

  As a nurse I spent many more hours at patients’ bedsides than any intern or resident or attending ever had time to. I saw transient events like absence seizures or abnormal heart rhythms that the doctors, with their once-a-day bedside rounds were unlikely to catch. I learned things about my patients that I could pass on at their discharge planning meetings.

  “Better choose a medicine that doesn’t need refrigeration. The Boulangers are in a shelter right now.”

  Now, as a doctor, I rely on nurses completely. They are my eyes and ears. I teach my residents to respect nurses’ judgments and contributions too.

  “If a nurse is worried, you should be too,” I tell them when they roll their eyes at being awakened by a nurse at 4:00 a.m. to come check on an ill child.

  Now Neil was that child. I respected the nurses who ministered to him. I related to the residents who cared for him. I hoped they’d all had enough sleep to make good decisions about his care. My child was now in their hands.

  12

  Temporal Lobe Agitation

  Neil’s days in the ICU are a blur to me. To him they don’t exist at all. He has no memory of them. It’s just as well. He’s haunted enough already without remembering days of pain and confusion. His leg, which the doctors had told him would feel better after the surgery, still ached, and nothing we did seemed to make him more comfortable. He’d yell at us to put it on a pillow and then scream at us to move it: up, down, left, right, higher, lower. It was never correct.

  I bore the brunt of Neil’s rants. Partly, I’m sure, because I was his mom but also because I was a physician and was supposed to be able to make patients feel better.

  “Mom, you’re a doctor. Do something,” he’d rail. I’d try, feeling inadequate, like I was letting him down. I’d fluff his pillow, rearrange his leg. None of it was ever right.

  “Mom, you’re a terrible doctor,” he’d snarl. “You can’t even make my pain go away.”

  He’d order me out of the room.

  “If you’re not going to do anything, Mom, just get out.” And when I tried to soothe him or busy myself arranging flowers or nightstand toiletries, he’d insist.

  “I mean it, Mom. Get out!”

  One of his nurses even told me I was making things worse. With me around, he “escalated.” On her shifts I spent a lot of my time crying in the waiting room. I had always prided myself on being a good nurse, able to minister capably to my patients’ needs. Now I couldn’t give adequate care to the one patient who meant more to me than anything.

  They ordered injections of the painkiller fentanyl for Neil, first administered by the staff then via a system called patient-controlled analgesia, or PCA. A plastic bag of the drug was hung from an IV pole. Its tubing was threaded through a machine that counted out incremental doses. There was a lock on the system so that patients could not overdose themselves. Neil was given a handheld device much like a nurse’s call light. He was taught how to push the button whenever he felt pain to deliver himself a dose of the medicine.

  But Neil never got the hang of using the PCA. He’d forget he had the button. He’d forget how to use it. He’d call for the nurses. He’d yell at me. We ended up having to push the button for him. We could never leave him alone.

  Saul’s brother, Louis, came to see Neil in those early days. He
is an acupuncturist and tried using his needles and acupressure to stop the pain. But he got yelled at too.

  “Louis, you’re making things worse. Stop it.”

  All of this was so not my son. Neil is a quiet kid with a wide smile. He has enormous patience. Once he tried to teach me how to play the guitar. I am not very musical, and things weren’t going well. I was discouraged and embarrassed that I couldn’t seem to understand this one concept Neil was trying to get across to me. I wanted to give up.

  “Never mind, Neil. I’m just not good at this.”

  “No, Mom. It’s not you; it’s me. Let me try another way.”

  He never lost patience with me. No rolling eyes. No sighs of exasperation. No muttering under his breath. He just tried different approaches with me until things eventually clicked.

  Neil always took frustration and disappointment in stride. Before his junior prom he was supposed to meet up with some friends and then drive to the event in a limousine. I drove him to the address his friends had given him. No one was there. We drove slowly up and down the street. We tried one block over. We tried another close-by street with a similar name. But we couldn’t find them. No gowned and tuxedo-clad students. And no limo. It was past seven o’clock, the time they were supposed to meet. I was afraid he’d miss out on half the fun of his junior prom: a ride in a real limousine.

  “I’m sorry Neil. I can’t find it,” I apologized.

  “That’s okay, Mom. I’ll just meet them there.”

  I thought back to my own teenage years. There’d be no end to the tears and drama if I were in Neil’s shoes, unable to find my friends and about to miss out on my first limo ride. But here was Neil, looking handsome, holding his date’s corsage in his lap, and maintaining his cool. We eventually located the house and he climbed into the limo, smiling and waving.

  And now here was my sweet boy demanding, cursing, raising his voice. They call it temporal lobe agitation, and it happens to many brain-injured patients. It can cause disinhibition, excitation, irritation, and aggression—all the behaviors Neil was now exhibiting. He picked at his bed sheets, tore off his johnny, and tried to climb over the guardrails, all the while loudly admonishing his family for not making his pain go away.

  But understanding the cause of his behavior, having a name for it, didn’t make it any easier to watch. In fact, like so many other times during Neil’s hospital stay and recovery, having an understanding of his brain’s anatomy and function only left me guilt-ridden at noticing its workings.

  During his numerous bedside neurological tests, Neil tried hard to comply with what was being asked of him. If he was asked where he was, he looked around the room for clues. Though he was unable to process what he saw into a correct response, he knew he was being asked for a place.

  “I’m in a gym,” he answered one time.

  “I’m on a boat,” another.

  If asked what year it was, again he’d strain to think, to remember. His brain told him he was being asked for a number. He always gave them one.

  “Ninety-nine.”

  “Six hundred and ten.”

  Though it wasn’t a year, it was a number. It wasn’t a correct response, but it showed thought and process as he tried to retrieve information from the various compartments of his injured mind. (He was definitely not “oriented times three.”)

  On one particularly foggy occasion, Neil kept plying us with the same request.

  “Six little yellow pills. Get me my six little yellow pills.”

  Over and over. At first we weren’t even sure we’d heard the words correctly.

  “What’d you say Neil?”

  “Six little yellow pills!” he shouted.

  Then I remembered. Saul’s brother, Louis, the acupuncturist was also a Chinese herbalist. Whenever one of us started experiencing cold symptoms—runny nose, scratchy throat—we’d start taking Gan Mao Ling to ward off a full-blown flu. Gan Mao Ling comes in doses of six little yellow pills.

  “He must want a dose of fentanyl,” I surmised, recognizing the pattern. He needed a medicine but didn’t know how to name the PCA. So his brain simply substituted one medicinal product for another.

  It scared me that he was so confused. It heartened me that he was working so hard to recognize patterns and provide answers. And it horrified me that I even thought about the workings of his brain lobes at all.

  13

  Dan

  Dan’s plane from Mexico landed in Boston at 11:15 the night of Neil’s first surgery. Saul picked him up at Logan Airport and brought him right to Neil’s hospital room. He laid his small duffel bag of clothes next to the bed. He would later use it as a pillow, sleeping next to his brother on the floor of the ICU. I hugged Dan tight. It was so good to see him, to feel him. He seemed so grown up. College was agreeing with him.

  I gently jostled Neil’s shoulder.

  “Neil, wake up.”

  He slowly opened his eyes, saw Dan, and closed them again.

  “Neil, do you know who this is?”

  “Dan,” he said without opening his eyes.

  “And who’s Dan?”

  “Brother,” he said and went back to sleep.

  Dan smiled and gave us a thumb’s-up sign, already seeming to grasp the significance of that recognition.

  Saul and I quickly brought Dan up to speed on Neil’s injuries. Then, with Neil sleeping peacefully, Dan pulled up a chair and quietly started telling us about his trip to Mexico. He flipped through the pictures on his digital camera, narrating the show. He seemed so worldly. He was a traveler. He had been somewhere his parents had not and had stories to share.

  After the travelogue, Dan told me to close my eyes and hold out my hand. Instead of placing the surprise in my palm as I expected, he clasped something around my wrist. I opened my eyes. There was a silver bracelet with a pressed flower encased in an acrylic oval. I collect pressed flowers, so the gift was perfect. He dug around in his duffel bag some more and pulled out an onyx chess set for Saul and a beaded belt for Neil.

  “It reminded me of his hacky sack,” Dan said.

  I felt a stab of fear, wondering if Neil would be able to return to the foot bag game he was so good at.

  “He’ll love it,” I promised.

  All the while, Neil slept. Then, out of the blue, he called, “Dan, cut it out.” We all laughed because of course Dan hadn’t done anything at all.

  “You’re not in the country five minutes and already you’re being blamed for stuff,” Saul observed. We all laughed. It was the first time we had laughed since learning of the crash more than twenty-four hours ago, and it felt good.

  When the kids were little, Dan was always getting into trouble for beating up on Neil. Often he deserved it, starting fights and picking on his little brother. (Dan even managed to take some measure of credit for his brother’s survival, telling him days after the crash, “I made your ass durable.”) But years later, Neil would admit that sometimes they would be sitting together on the couch watching TV and out of the blue Neil would yell, “Ow!” knowing I would come in and punish Dan, who all the while protested his innocence.

  But while it may have been okay for Dan to beat up on his kid brother, it was not okay for anyone else to mess with him. One day after school, a group of kids started harassing Neil. The boys must have been in the second and third grade at this time. Dan came up behind his brother and quietly told him to drop his backpack and run home as fast as
he could. Neil took off. Dan scooped up the pack, distracted the head bully with a kick to the shins to give Neil a head start, and then took off after him. The two arrived at home breathless but unharmed. We had a little talk about bullies and fighting, but I was secretly proud of Dan for sticking up for Neil.

  Dan was a tremendous help to us those first days in the hospital. He carried Neil to the bathroom and helped him in the shower. He brought him smoothies from the cafeteria and fed him with a straw.

  At one point Neil’s nurse Sean wanted to get him out of bed. He told us he was going to go get another nurse to help with the transfer from bed to chair.

  “I’ll help you,” Dan offered.

  Sean looked wary.

  “Don’t worry,” I assured him. “He worked at a camp for disabled youth. He knows how to transfer patients.”

  Sean brightened. Now each young man draped one of Neil’s arms across his shoulders. Sean counted to three and they lifted Neil to his feet. Neil teetered weakly but regained his balance with their support. As they were getting ready to pivot him over to the chair, an older nurse passing by the room came running in, waving her arms.

  “Family can’t lift patients,” she warned.

  At that point, Neil released Sean, wrapped both of his arms around his brother’s neck and said, “But I trust him.”

  He then laid his head on Dan’s shoulder and added, “He lifts weights.”

  The boys were always close, but the accident served to bond the brothers in a way no other experience could. After Neil left the hospital and friends would gather around his makeshift bed, a pullout couch in the living room, I’d often overhear him telling them, “My brother came all the way from Mexico to be with me.” And Dan’s love and affection for Neil has deepened in a new and lasting way, precious now for almost having lost him.

 

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