Crash (5 page)

10

A Bad Dream

If having my youngest son in an ICU in Boston with a head injury after being struck down by a drunk driver was a nightmare, then trying to reach my oldest son in Mexico to give him the news about his brother was a real bad dream. Dan was in between semesters of his freshman year at Goucher College in Maryland and was spending three weeks in Cuernavaca living with a Mexican family and learning to speak Spanish. He had been sending us short, newsy e-mails from a cybercafe in town every day or two: descriptions of the countryside, the food, and his host family. Funny stories of linguistic missteps—like the time he tried to tell a cab driver he was hot, meaning the environment was warm; only it came out “I’m hot,” as in “hot for you.” I tried not to be jealous when he told us how much he liked his
madre
there.

When Dan left, he had given us an emergency contact number for the language program coordinator at his school. We gave him a phone card he could use in an emergency. We thought we had our bases covered. We hadn’t counted on this.

We thought about sending Dan an e-mail, but we couldn’t count on him checking it right away. Besides, striking the right tone in an e-mail can be difficult. How would we convey the seriousness of the situation without throwing him into a total panic? We called the program director and explained our situation. Dan’s brother was in an accident. We needed to get word to him. She promised she would try.

Since all we could do now was wait, Saul decided to book us a room in the hotel for hospital patients’ families across the street. We figured we could take turns getting some sleep. Shortly after Saul left to bed down, the Goucher College study abroad director called me on my cell phone. She told us she had left word with her Mexican counterpart at the language school. She also gave me the number of the family that was hosting my son. From Dan’s description of the area, it sounded pretty rural and quite indigent. So I was glad to learn they had a phone.

My Spanish is limited and informal. I never took it in high school or college but have learned on the job from my patients over the years. Saul’s Spanish is nonexistent. So once again, I was on. I tried dialing the number from Neil’s room, but the nurse told me cell phones weren’t allowed in the ICU. She said they would interfere with patients’ monitors. I knew that with newer cell phones this just wasn’t true, an urban legend perpetuated, but I wasn’t going to argue with the woman who had control over when I got to see my kid. I went out to the waiting room to make the call. That’s when I learned that we don’t have international calling on our plan and it would take four days to get it. And no, she couldn’t connect the call, even if it was an emergency. I tried going through the hospital operator, but she couldn’t connect me either. I tried charging the call to my home phone, but there was no one physically there to accept the charges, so the operator said her hands were tied. I finally got a supervisor at the phone company to place the call for me. The line crackled and rang with an unfamiliar tone. A woman answered. I used my best Spanish to ask for my son. The woman replied with an energetic round of rapid-fire Spanish I did not understand. Then the line went dead. I didn’t know if I had been understood or not.

I felt lost and alone. I thought if only Saul were in charge, everything would be better. He was the rock of the family, the decision maker, the doer. I was thrust into this position of family leader first because of my medical background, now because of my Spanish. But I felt anything but in charge. I slammed the dead receiver into its cradle several times in an unusual display of frustration. I was glad there were no other families in the waiting room to witness my outburst. I just sat there, my face wet with tears and snot, not knowing what to do.

Then my cell phone rang.

“Hello?”

There was no sound. No reply.

“Dan?”

“Hey, Mom, what’s up?” He sounded so upbeat I knew he couldn’t have gotten the entire message from the language school or from his
madre.
His voice was crackly and time-delayed. It made me feel far away from him, but it was beautiful just the same. I hated giving Dan this news during what should have been the trip of a lifetime. I didn’t know how to begin.

“Your brother’s been in an accident,” I said, quickly adding Dr. Chuck/Mitch’s reassuring words. “He’s gonna be just fine though. Don’t worry.”

But I was worried, and Dan knew it. I filled him in as best I could. The broken leg, the crooked smile. I told him about Trista. I didn’t tell him yet that she had died, just that she was in worse shape than Neil. I didn’t know how much he could take in over the phone. I paused, waiting for his response. It came in three words.

“Get me home.”

11

A Nurse First

When I was a little girl, I didn’t know exactly what I wanted to be when I grew up, but I knew I would be in one of the helping professions. I thought about becoming a social worker or a teacher of the deaf. In high school I finally settled on being an operating room technician. The idea of being a witness to the drama of surgery was very enticing. A guidance counselor at the time suggested I go to nursing school instead. I could still become an OR nurse, she reasoned, but I would have many more options available to me. I followed her advice and started out at a hospital-based diploma program, an endangered species nowadays. Ultimately I graduated from Quinsigamond Community College with an associate’s degree in nursing.

My first job as a graduate nurse was at a tiny community hospital in rural central Massachusetts where I rotated between the labor and delivery suite, the postpartum floor, and the normal newborn nursery. I loved the joy and drama of L&D and ministering to new mothers on postpartum. But it was in the normal newborn nursery where I first fell in love with caring for children.

Saul and I owned a wholesale doughnut business at the time. We would get up somewhere between two and three o’clock in the morning to mix, roll, and cut the dough, then fry, glaze, and package the doughnuts. We had a radio going all night; Dire Straits and the Cars, as well as debates and news from the National Press Club. After a breakfast, often fresh corn on the cob from our garden (never doughnuts!), Saul would load up the truck and head off to deliver our product to stores and restaurants and I would head to the hospital for my seven-to-three shift.

After I passed my boards and became a registered nurse, we moved to the city of Worcester. Saul opened a bakery, and I took a job in the pediatric intensive care unit of a large private hospital. My first patient was LiliBeth, a lovely four-month-old baby who was brought in not breathing by her distraught father, who had fallen asleep with her on the couch. He must have rolled onto her. I took care of her for days, suctioning her breathing tube, placing ointment in her eyes so they wouldn’t dry out, sponge-bathing her tiny body. We all understood that she was brain dead, being kept alive only by her ventilator, but her parents took some time to accept that diagnosis.

In the meantime I changed the dressings at her IV sites and put clean sheets on her crib every day. We did all the tests to gently show her parents she was not alive: Her EEG showed no electrical activity in her brain; her eyes did not move when we irrigated her ears with water (called the caloric test) or turned her head from side to side (called the doll’s-eye maneuver). When her parents ultimately agreed to take LiliBeth off life support, I turned off her ventilator and heart monitor. I gently slipped the breathing tube from her throat, unclipped the leads from her chest, wrapped her in a blanket, and laid her in her mother’s arms while her father sobbed.

As a nurse I was not generally the one to give parents bad news—that was the job of the residents or the attendings—but I was there for the before and after. I answered their questions. I hugged them when they cried. I handed them tissues. And I took their babies from them when there were no more tears left to cry.

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.