“I’m not convinced. Love may be big, but it’s not that big.” The thought struck me that this was not the thing to be saying at an anniversary dinner. “And then in the next line he sings, ‘It’s bigger than you and me,’ meaning that life is bigger than both himself and the other person combined. In other words, life is bigger than love. It’s bigger than you and I. He’s basically saying, ‘I don’t need you.’”
“You’re wrong there!” she announced exultantly. “That’s not even the second line. The next line goes, ‘It’s bigger than you and you are not me.’”
Hmmm. Was this true? We pulled out our iPhones, and the lyric sheets we found online confirmed that her version indeed was the second line. But as for the first, the lyric sheets were no help.
Because of August and his medical needs, this had become the central question of our marriage: Will life be bigger than love? Or will love be bigger than life? Which in the end would triumph?
IX
A CHANGE WAS MADE WITHOUT OUR PERMISSION. Before the catheter-revision surgery, the tip of the catheter in August had stopped midway up the thoracic spine. After the surgery, it terminated in a new location, one much higher. Dr. Sandemelir had instructed the neurosurgeon, Dr. Gordon, to raise the tip to the second cervical vertebrae, C2, right below the skull. This was supposed to allow the benefits of Relaxanoid to be distributed throughout the greatest extent of August’s body.
Dr. Sandemelir hadn’t asked for our consent for this change. She didn’t inform me until the day after the surgery, so I hadn’t known about it during Ilene’s and my anniversary celebration. When Sandemelir told me, I didn’t think much about it. But when I mentioned it during one of my frequent cell phone updates to Ilene, she became livid. She didn’t like not having been consulted, she would never have approved, and she feared that it would lead to a terrible consequence.
And that is indeed what happened. A few days later I brought August home from the hospital, and, as Ilene had predicted, the unthinkable occurred—what had been very bad became even worse. August’s arching suddenly, dramatically, astronomically increased to a new level of wretchedness. Overnight it became orders of magnitude greater, going from simple nightmare into the deepest realm of the macabre. August’s reaction went well beyond the dreaded Full Pterodactyl. What had been mere arching became arching in extremis. Like some figure out of Ovid, our son had metamorphosed into a twisted tree trunk of a boy, wrapping around himself, all kinks and swirls.
Fear gripped me. August’s neck had become so bent that he couldn’t take anything by mouth—I had no way of getting food or drink into him. Whatever he did swallow he immediately projectile-vomited, something he’d never done before. In the state he was in, he was going to starve to death. And, on top of everything, he was crying, crying, crying. At my wits’ end and terrified, I decided to take him to the ER. His torso was so deformed, though, that I could barely strap him into his wheelchair. Once I finally managed to do that, I drove him to Bensalem-Salomon.
The next morning at about eleven, Dr. Sandemelir came over from her clinic to August’s hospital room. She blew through the door like a bitter northern wind. She was alone—the Yellow Man did not accompany her, nor did Dr. Joyce. At the beginning of their intervention, in 2010, these three had been all over August’s case, but now, in 2012, they were fading from view.
Samuel Johnson writes, “There are a thousand familiar disputes, which reason can never decide.” This sentiment applied here, for from the start she was incredulous and defensive, openly doubting me when I told her that the arching had intensified. She moved around August’s bed, tapping his knees and feet, seeking reflexes. She wouldn’t make eye contact with or engage with me.
“But why do you believe the extension has increased?” she finally asked, her tone short and dismissive.
“Because it has,” I said, confounded by her question. “I can tell by looking at him. Can’t you? By trying to feed him. By trying to get him to drink.”
She didn’t say anything as she continued to check his reflexes.
“Why would I be making this up?” I asked, staring at her averted face. My question hung in the air. I could see that she was a young physician trying to handle a difficult situation. I knew that she was bright and dedicated and that she wanted to do what was best, but I also was beginning to see that she suffered from tunnel vision.
She had ceased checking August’s reflexes and was standing motionless on one side of his bed, I on the other. Below and between us lay August’s perversely twisted form, a vision straight out of the book of Revelation. She again bent over the bed and began to manipulate his limbs, checking his range of motion. As she touched him, he made no sound, and his angelic face was expressionless. She couldn’t manipulate his left arm because it had an IV. And there was another line: a feeding tube had been inserted into his nostril, down the esophagus, and into his stomach.
As she tested his legs she repeated calmly that no connection could exist between the catheter revision surgery and the arching, which, anyway, she doubted had gotten worse.
“It has gotten worse,” I insisted, my voice rising. “Infinitely worse. It came from the catheter revision surgery.”
She looked up and finally met my gaze, squinting at me. She appeared offended by what I’d said. “That’s not possible,” she announced, shaking her head.
“If it wasn’t the catheter revision surgery causing it,” I said, flummoxed, “then why is this happening now, right after the surgery?”
She repeated that the catheter revision “couldn’t possibly” be implicated.
“Then explain to me why,” I said, “that just three days after this last surgery, he’s arching more than ever. He can’t eat or drink. How am I going to feed him?”
“We—,” she began. But then she suddenly lost momentum. She stopped speaking and moving. Perhaps the fact that August couldn’t take any liquid or food by mouth had finally sunk in. She glanced over her left shoulder at the closed hospital room door. Was she, like the sorcerer’s apprentice, wishing that some older physician like Dr. Joyce—a wise old sorcerer—would enter, take over, set things right, make the floodwaters abate? No one came. There was only stillness and silence. Then she looked down but not particularly at August, and for several moments she appeared to be reevaluating the situation.
“He can’t even eat now,” I said, much more gently than before. “I need to know what to do. I need to know why.”
She had lost her fizz. And then, almost as if she needed to find something to do to keep her hands busy, she leaned over the bed railing and again examined August’s grotesquely convoluted body. She was not looking at me as she fidgeted. She finally conceded, in a low voice I could barely hear, “I don’t know why.”
In retrospect, I realize that she was caught in the mind trap of local suboptimization, a concept that originated in the business world. The Oxford English Dictionary defines suboptimization as “the optimizing of an individual part or department within an organization, rather than the organization as a whole.” Economist Thayer Watkins says that the term “has been adopted for a common policy mistake. It refers to the practice of focusing on one component of a total and making changes intended to improve that one component and ignoring the effects on the other components.” Watkins illustrates with this example: “a firm focuses on minimization [of] cost . . . and takes measures which not only reduce cost but also reduce revenues.” To a much smaller degree, the term local suboptimization has been used in scientific circles. I first heard the phrase while listening to Ira Flatow’s NPR program, Science Friday. In science, it describes a situation in which a scientist can see what is correct but only within a very small frame. He or she understands what is true within a tiny space but cannot take into account the bigger contextual picture. In medicine, the term has hardly been used at all outside of the field of hospital organizational management. Local suboptimization applied to Dr. Sandemelir’s case to the extent that she saw that the p
ump was working well, and this was all that mattered to her.
Day after day August lay in his hospital bed like a contortionist unable to find the way back to his starting posture. The arching just wouldn’t abate, and I thought, Quoth the pterodactyl, “Nevermore.” I began recycling scenes from August’s birth, as though that event in 1999 and this 2012 episode had blended together to form one continuous violation. In my mind, I shouted accusations that had roots in events thirteen years earlier. Someone monitoring my thoughts would have concluded that I was becoming unhinged.
Dr. Sandemelir finally suggested turning up the flow of Relaxanoid to solve the arching. “This may help,” she said one day. And so the flow rate was gradually increased over several weeks’ time but without positive result.
“Ah, August,” Dr. Sandemelir mumbled on several occasions, shaking her head, as though he was being a very bad boy for not going along with the program. She may not have intended to, but she was blaming the patient.
In the fall of 2012 August and I were living again on Five West, once more in room 510. It felt as though the fall of 2010 had never ceased. We were back in the implacable routine of hospitals. Everything from two years earlier flooded back: the rhythms of hospital life; the bells, beeps, and intercom pages; the sound of wheels and knocks at the door; the odors of physicality. Seeing that August and I had returned, one of the nurses joked, “You better not try and escape.”
During this stay August tested positive for MRSA (methicillin-resistant Staphylococcus aureus). Doctors and nurses this time treated him with extreme caution. Everyone coming into his hospital room had to scrub up and wear a special yellow paper gown and then wash again before leaving the room. The intention behind these special procedures was to reduce the risk of August’s MRSA spreading and becoming some other patient’s hospital-generated disease. I found these precautions confusing. They would have made perfect sense two years earlier but didn’t at this time, when arching was the issue and no sign of infection was evident. Still, I went along willingly because I understood that the hospital was trying to do the right thing.
August spent his days in bed and was turned periodically to prevent bedsores. Beneath him a thin but active electric air mattress hummed. The railings on each side always remained raised to prevent him from tumbling out. Small electronic monitors perched gargoyle-like above him, and they displayed colorful, squiggly, moving lines. These announced his rates of heartbeat and oxygenation, the metrics of his helpless little being. At least once every hour or two the electrodes attached to his body or the pulse oximeter gripping his finger would loosen. A noisy beeping would ensue and not be silenced until a nurse came, and sometimes that would take as long as fifteen minutes. Occasionally the monitors would go off for no apparent reason, to the same effect—a long wait for a nurse to quell the beeping.
August spent sixty-four straight days in Bensalem-Salomon. We couldn’t find our way to the exit. Every day was a roller coaster of emotions, highs and lows, creating endless nervous stress. During this period August and I communicated in our own special language, and we listened to each other’s silences. But as the weeks dragged on, the wordless speech ran dry. Of the two of us, at least he remained cheerful.
At times August was in tremendous discomfort. He howled for hours in pain. Once he bellowed all night. So loudly did he do so that I could hear him from the far end of the corridor. It was late, and I had just come back from eating dinner in the cafeteria on the ground level. After I exited the elevator and entered Five West, I could hear him. He was far away. Between where he lay and where I stood were many hospital-room doors. All of them were shut. Immediately I knew who it was.
During the day, Bensalem-Salomon clinicians trooped in to have a look: wave after wave of white walkers. Inquisitive faces would approach the subject in his bed and peer down. Not one knew what to say. Not one suggested a name for August’s condition. Not one seemed to have the slightest clue why he was arching. All appeared mystified. But most importantly, no one believed that what August was enduring was his or her problem to solve.
Memories of two in particular stayed with me. One was a young, bantering male clinician, who said with witty aplomb, “Wow! That can’t be comfortable.” He delivered this wisecrack while viewing my boy all balled up in a knot. The other was a raven-haired young female physician, who chided, “What is wrong with you!? You are a parent in denial!” Wagging her finger, she sharply informed me that I was a parent unable to come to terms with the fact that my child was “suffering from cerebral palsy.”
During these physicians’ visits, August was having trouble keeping food in his tummy. The feeding tube wasn’t entirely doing the trick, and his weight—never ideally high—was declining.
Neither Dr. Walker nor Dr. Munodi came by. I don’t know where they went, but they didn’t seem to be at the hospital anymore. Dr. Joyce was still running the pediatric neurosurgery program, but I had no desire to speak with him.
Being caught in the health-care system is like being caught in the legal system, especially if it is regarding a child. Once the bureaucracy ensnares you, you can’t simply walk away. You must play by its rules. So August and I were, as Doron Weber says of himself and his son Damon in his 2012 book Immortal Bird, “doing hard time in the bowels of American medicine.”
The hospital’s operation was shambolic. Each clinician who August and I dealt with was functioning on his or her own—cowboy style—consulting with other physicians only on an ad hoc basis. It was wormhole thinking. Each approached August’s case through the eyes of his or her specialty; each was in a silo, separate from the others, and each had the one-tool approach that comes with specialties, so that, overall, August’s care was fragmented. It was as if they had all had collectively decided to turn the field of medicine into a massive medieval passion play re-creating the Tower of Babel.
I had always looked favorably on palliative care doctors. Only a truly sensitive and caring person, I assumed, would take up such a specialty. And I still believe this. I would wager as an uneducated guess that over 95 percent of them are genuinely good, caring, sensitive people because it takes a special type of person to do that kind of work. But, as it happened, we ran into one of the few bad apples. Dr. Kim Eugenides seemed to have an agenda all her own. The first time she entered August’s hospital room, her mind was already made up. Even before reading his chart, she knew what to do. Within minutes she began lecturing me as though from a script.
“Have you begun to think about the next phase of his life?” Standing in her white lab coat, she intimated that I should start picking out a coffin. This question’s practiced quality indicated that she asked it a lot. A clinician with magical powers, she then got out her pad and started scribbling prescriptions. This physician was promiscuous with the prescription pad. These were pharmacy orders for dark potions and soporific elixirs. The Eugenides cocktail consisted of morphine, clonidine, Hycet (hydrocodoneacetaminophen), Neurontin (gabapentin), and Valium (diazepam), all to be started at once and together. Eventually, without subtracting any of these, and without explaining why, she added methadone.
The massive drugging did nothing to alleviate the arching, which was the problem that needed solving. Her potions didn’t do anything except keep August “snowed.” It couldn’t have been pleasant. And sometimes there were paradoxical responses in which, instead of being sleepy, he became agitated. But most importantly, the more the doctor drugged him, the more a chain reaction set in. One by one the physicians at Bensalem-Salomon stepped back and checked out. If Dr. Eugenides had been called in and was giving August a maximum of drugs, he must be dying. To my mind, Dr. Eugenides’s drug regimen was the most idiotic aspect of August’s treatment at Bensalem-Salomon.
Like the other physicians, Dr. Paul Sticks, who lived in our San Marco neighborhood, wasn’t able to solve the arching riddle. August was noisily playing with a toy when Dr. Sticks came into his room. Speaking slowly, Sticks said that Ilene and I should figure out w
hat our end-of-life wishes would be for August. What would we want the hospital to do if a life-threatening situation arose and one of us was not present?
“Life and death,” I said.
He looked at me sympathetically but did not speak.
“What life, what death?” I said.
“It would be good for us to know what the wishes of the parents are.”
Our wishes? Wasn’t this topic premature? How could death be the topic when the patient was busy thrashing his toy? I couldn’t wrap my mind around the two ideas at once: August playing, August dying. The two ideas were incongruous. Once the subject had been broached, however, Ilene and I had to follow through. We wanted to be responsible parents. What would we want the hospital to do? Very late that night, we discussed the matter. Given our schedules, even this conversation had to be rushed, and we held it while brushing our teeth.
Central to our decision, when we reached one, was the wish that August not suffer. A feeding tube was one thing, acceptable in the big scheme of things, but a ventilator was quite another. We did not want him to be put on one, not if there would be little chance of him ever coming off it. We didn’t want him to endure pain by being kept alive if the only reason for sustaining his life was that we couldn’t let go of him.
The following day, before he went off shift, Dr. Sticks helped us put our names to a “do not resuscitate” (DNR) order. (This directive has since been renamed an AND—“allow natural death.”) Ilene and I met with him in the late afternoon. We hovered and agonized over the document.
“I want to make certain,” Ilene said, holding the pen, “that August will continue to receive the same level of care he is receiving now.”
“He will,” said Dr. Sticks.
“If signing this form means there’s going to be a change in his status or a drop off in his care in any way, I don’t want to sign,” she said. “Will he be treated the same?”
A Life Beyond Reason Page 16