Ilene finally came around and agreed to having the pump implanted. She had lived a long time in the Bay Area, as I had, and there is something about living in that part of the world that makes people a little too eager to embrace high technology. I suspect it’s the razzle-dazzle that comes with thinking that we are living on the edge of the future. She was as susceptible to this as I was.
A week before the procedure to implant the pump, our friend Dr. Arnold Graham-Smith, at the time a practicing surgeon, advised us to request seventy-two hours of antibiotics during the immediate post-surgery period. He informed us that this longer amount of time would help prevent infection. But when we asked Dr. Joyce about it, he responded by saying that Bensalem-Salomon had a strict protocol requiring him not to exceed twenty-four. Later, when we told Arnold about this time limit, he simply winced.
At 9 a.m. on July 8, 2010, Dr. Joyce began the surgery that implanted the Relaxanoid pump. On the day of the surgery I did not speak with the Yellow Man, but he was present in the operating room while the pump was being implanted. Company reps for Hippocrates and other medical device makers, I was learning, frequently did this. People in this line of work, often without having much or any medical training, earn substantial six-figure salaries. After the surgery and then time in the recovery room, August was wheeled in a hospital bed back into the room where I was waiting for him. We had been assigned to a room in Bensalem-Salomon’s west wing on a floor known as Five West. He was still heavily sedated.
After several days of closely monitored convalescence at Bensalem-Salomon, August was supposed to go, as a follow-up, for two weeks of intensive therapy as an inpatient at Brooks Rehab. Ilene and I had been led to believe that during these two weeks physical and occupational therapists would help August learn how to feed himself, as Dr. Sandemelir had suggested. August, though, while still at the hospital, was experiencing so much pain that he could not undergo therapy. He cried and cried and cried.
While August was still an inpatient at Bensalem-Salomon, the decision was made that he could not go to Brooks because his discomfort level was too great. So we took him home. When I wheeled him in during the first month of weekly post-op visits with Dr. Sandemelir, he often would be wailing at the top of his lungs. Struggling with the presence of a large foreign object in his body, he was crying in a way that I had not seen or heard since his first two and a half years of life.
After a month or so, August calmed sufficiently to the point that he was able to go to school at Mt. Herman. The school year started during the third week of August, and, as he had always done during his many years prior, he went to the DLC Nurse & Learn after the school day was over. He usually spent from an hour and a half to two hours there at the end of each day, and I would pick him up between 5:30 and 6 p.m. to take him home. His providers, Eric Conger and Nancy Frias, took great care of him. They were dependable and conscientious, and I could relax during this time, knowing that he was in good hands.
The difficulty began seven weeks after the surgery, at the end of the month, on August 27, a Friday. When I came through the DLC door at about 5:45 p.m., Nancy and Eric approached with worried looks. When Eric had been changing August’s diaper just minutes earlier, he’d noticed something troubling. The surgical incision site at the base of August’s spine had opened ever so slightly, just a pinhole of a break in the skin, and what alarmed Eric was the fact that pus was slowly oozing out.
This discharge was starting over a month post-op, and that really worried me. Immediately I drove August to Bensalem-Salomon, where he was readmitted. But my speed in getting him back into the hospital didn’t matter, since he and I then spent the entire weekend waiting in a room on Five West for someone from the pediatric neurosurgery program to come through the hospital room door and address the problem. Finally, on Monday morning, Dr. Joyce strode in with an air of busy importance and did a brief inspection. The pus that was oozing out was, he said, actually cerebrospinal fluid (CSF), the liquid that was supposed to remain within his spinal cord canal and brain cavity. He also announced that the pump site had become infected, and this meant that the oozing fluid was not just CSF but also runoff from the infection. He then informed me that this was not an insurmountable or even a serious problem. The next day, to cleanse the pump, he performed major surgery requiring general anesthesia, opening August up to “disinfect” the hardware. Afterward he began flooding August’s system with antibiotics.
Dr. Joyce’s first operation to disinfect the pump didn’t work. The site remained infected, and the CSF continued oozing out. In the next weeks—and months—three more major surgeries would be devoted just to trying to stop the leak and cleaning the pump. I was learning on the fly just how frequently implanted hardware of one kind or another leads to infection. This would have been helpful to know before consenting to implantation of the pump. Dr. Cohen had said something about infection, but I hadn’t grasped just how extensive, serious, and difficult to treat such problems were. Artificial knees, hips, shoulders, deep-brain stimulators, anything human-made that is put into the body is subject to infection. And once it turns septic, it is hard to disinfect because the synthetic material doesn’t respond to antibiotics in the same way that natural tissue does.
Slowly the realization dawned: I had done my research, but I hadn’t asked the right question. Months earlier I had gone online looking for information about Relaxanoid pumps but hadn’t found anything negative. I thought that I was performing due diligence. But in addition to seeking information about pumps, I should also have been investigating the success rates of implanted hardware. Hardware infection in general was the issue, not the specific pump.
Each operation to clean the pump was supposed to be the last one. August would go in for a cleansing surgery, remain in the hospital as an inpatient during a recovery period, and then return home. Ilene and I would hope that the infection would abate. When it didn’t, we would head back to the hospital for another operation.
So frequently was August a hospital resident that he had to have a peripherally inserted central catheter (or PICC line) put in. This was a long-term semipermanent central IV line entering his body on the right side of his neck. Having it there eliminated the need to stick IV lines into his arms or hands, where they would become detached with maddening frequency. It sometimes would take a nurse up to fifteen minutes to get a new “stick.” Between surgeries, when he was at home with the PICC line, our house became a mini hospital, with the appropriate syringes, gauzes, and sterilization equipment laid out on a special tray. Four times a day, six hours apart, we had to inject antibiotic into his PICC line.
This procedure had to be undertaken with extreme care. Not only did all the items have to be immaculately clean, but with each injection we had to avoid letting an air bubble creep into the fluid. A bubble could go directly to his heart and kill him. At least this was the extreme danger impressed upon us. Administering the 2 a.m. antibiotic was a nerve-racking experience. Knowing that a mistake could kill our child demanded focus. Going back to sleep afterward proved difficult.
I had first gotten to know the insides of Bensalem-Salomon back in December 2001, within months of our having moved to Jacksonville from San Francisco. Clio had just been born when August came down with a mysterious ailment that the physicians had trouble diagnosing. Bensalem-Salomon assigned August to the fifth floor of a relatively newer section of the hospital known as “The Tower.” Referencing the infamous Tower of London, I quipped to Ilene that August was an innocent man who had been sent to the Tower. Ilene was told not to visit because she was nursing Clio, and the doctors feared that whatever August had might be transmitted to her and then the baby. So I spent the entire time with August and rarely went home. After two weeks of mulling it over, his doctors decided that he must have been suffering from Stevens-Johnson syndrome. This is a severe skin disorder stemming from an allergic reaction to an antibiotic, but in August’s case it also involved an autoimmune disorder. August was given a steroid shot
, he almost instantly returned to normal (or “normal” at least for August), and the syndrome never came back. He and I wound up going home on Christmas Eve. Christmas Day that year was my sweetest ever.
Over the ensuing decade, but before the Relaxanoid pump implantation, August would spend several nights in the hospital, but what I’d discovered in 2001 held true for the summer and fall of 2010. Once again, Bensalem-Salomon assigned August to Five West, to room 510. The sounds of hospital became mind-numbingly familiar: the whir of the wheels of carts, pages over the intercom, the knocks at the door. These sounds never stopped and rarely changed. Interruptions to my grading of student papers were as common as cannabis dispensaries in Oregon. From home I had brought August’s boom box, and day after day I was his DJ, mixing things up with Raffi, the Muppets, and Dan Zanes. One after another I planted toys within his grasp on the bed sheets. His favorite was the Activity Atom, and as he batted at it he would emit a squeaking laugh.
Dr. Sandemelir had said that August and I would be coming into her clinic about once every six months, but now we were hunkered down in the hospital 24-7. I became what Vicki Forman in her memoir This Lovely Life calls “a hospital-parent specter.” At the beginning of these dreary hospitalizations, I tried staying overnight, attempting to sleep on an extremely uncomfortable foldout chair. Toward midnight one night I pirated a couple of cans of Jon Boat from Jacksonville’s Intuition Ale Works into August’s room and hid them among his toys. I didn’t think I’d get busted, but, in the darkness, a nurse unexpectedly entered and heard that unmistakable snap of a pop-top being opened. She switched on the light and then gave me a tongue-lashing worthy of a Prohibition-era teetotaler.
“Sir! This is a children’s hospital!”
I quickly discovered that I could not sleep for more than forty-five minutes at a stretch, so I started driving home every night and returning to the hospital around 6:15 a.m. Ilene would spell me for a few hours whenever she could, but her fixed work schedule made her unavailable during weekdays. She also had Clio to look after, and she wouldn’t have been able to lift August (due to the herniated disc in her neck), something for which I sometimes needed to be on hand. So I lived for the most part at the hospital, preparing classes and grading papers by August’s bedside and only leaving to drive to campus to teach or home to sleep.
Many parents had to leave their children alone all day in their hospital rooms because they couldn’t afford to miss work. If a patient was very young, nurses would pull the crib up to the room’s doorway so that the little occupant could see the nurses in the corridor—and so the nurses could see the patient. With crib bars at so many doorways, the place resembled a zoo.
“This next surgery will resolve the problem.” A faint Argentine accent whispered around the edges of Dr. Joyce’s words. He said this several times, right before August was heading into yet another major operation. He kept insisting that he could fix things, and, on his recommendation, I kept signing consent forms for further procedures. Ilene and I didn’t see any way out of this predicament. It is easy to look back now and question this course of treatment, but in the fog of war we went along. The doctor was telling us that our son needed these surgeries. To say no would have been like getting out of the endodontist’s chair in the middle of a root canal procedure.
Whenever I spoke with Dr. Joyce, my voice became adenoidal, a little catch suddenly showing up in my throat. There was something paralyzing about being in the presence of this grandee of the house of medicine. One time, while waiting with August for our appointment to begin, an enthusiastic young male resident physician spoke with me. He was one of the residents among whom Joyce held court during rounds. The fellow now went on and on concerning Dr. Joyce’s eminence. “It’s such a privilege to work with him!” he gushed.
Some of the Bensalem-Salomon physicians were not so awestruck. A few began approaching me privately, and, speaking sotto voce, informed me that trying to save hardware compromised by infection was futile. “It rarely works,” said Dr. Munodi. A few doctors took me aside individually to advise me to give up on the pump. Alexander Pope wrote, “Who shall decide when doctors disagree?”—and that question applied here. Dr. Walker was particularly emphatic: “That monstrosity of grandiosity needs to come out now.” But Walker and Munodi were not August’s regular doctors. Not only were Munodi and Walker in line with Dr. Cohen, but they also intimated that a spirited debate was taking place behind the walls of this institution—a war in heaven. Dr. Munodi told me as much. Dr. Joyce’s manner of treating our son was being “hotly debated” in the hospital’s medical community.
July, when the Relaxanoid pump was implanted, is the cruelest month. Ilene and I did not know this at the time, but the month can be considered cruel on account of the “July effect,” an increase in the risk of medical errors and surgical complications when medical school graduates begin their residencies. In the United Kingdom, a similar phenomenon is called “the killing season.” This is to say that early July is not the best time to have a major—or perhaps any—procedure performed in a teaching hospital. Dr. Joyce himself had several decades of experience, but who knows with which intern-just-turned-resident he worked? Who knows who did what with August?
Every institution has a few malcontents, so at first I assumed that the dissenting voices were coming from that small cadre. But the sub rosa dissent kept surfacing. One of the main dissenters was Dr. Munodi. One day, with the door of August’s hospital room closed—it was just the three of us present—he informed me that it was his opinion that Dr. Joyce wasn’t properly weighing benefit versus harm. There could be secondary effects, he warned: a number of major surgeries conducted in quick succession like August was undergoing could initiate an unintended consequence down the line. On another occasion, Munodi speculated that Joyce was trying to save August’s pump because he needed to prove something to his younger colleagues, who generally didn’t like him. It was obvious to me from Munodi’s tone that he himself didn’t. Keeping the pump in, Munodi asserted, was a matter of Joyce’s pride mixed with generalized hubris.
The pediatric neurosurgery program that Dr. Joyce had founded and was running under the auspices of a local university was implanting a lot of pumps in children. A propump camp and an anti-pump faction, I inferred, had formed at Bensalem-Salomon.
During one of his unsolicited visits, Dr. Munodi asked me, “Did you come under any pressure to choose the pump over other options?”
“I don’t know,” I said. I stood there before him in August’s room, pondering and suddenly feeling dismayed. “I suppose,” I hesitantly answered. I hadn’t thought in such stark terms about that period when Dr. Sandemelir was advising me to switch from Botox injections to the pump.
“There has been some urgency to move pumps,” he muttered disapprovingly. “The hospital’s mark-up is considerable. The pumps are a profit center. The place is becoming a mill.” What he said reminded me of several lines from the Dire Straits song “Money for Nothing” about “moving” consumer products. Dr. Munodi’s words were an unwelcome data point.
After hearing Dr. Munodi say “move pumps,” I suddenly had doubt in a way that I didn’t have before. What he had said distressed me. Years later, in February 2013, Time magazine published Steven Brill’s 24,000-word article “Bitter Pill: Why Medical Bills Are Killing Us.” Brill investigated hospital billing practices and revealed that their executives were gaming the system to maximize revenue. Reading that piece, I wondered if the pump had been prescribed for ulterior purposes. It may have been the right mode of treatment, but, then again, maybe it wasn’t. Did the hospital and the university promote it out of self-interest? Verifying what Dr. Munodi had asserted, Brill reported that hospitals’ mark-ups for digital implanted devices (mechanisms such as the Hippocrates Relaxanoid pumps) were astronomical, serving as major sources of profit. Had Dr. Sandemelir, a university employee, been urged to recommend more of them than she otherwise would have?
Years later, in a 2014 T
ED Talk, “What Your Doctor Won’t Disclose,” Dr. Leana Wen stated that, for medicine to work, patients have to be able to trust their doctors. When the trust is gone, all that’s left is fear. I now felt fear. After hearing Dr. Munodi say “move pumps,” I began paying attention to the news reports about doctors being highly paid speakers for pharmaceutical and medical device companies, receiving financial incentives to prescribe this drug or that device, mainly for the purpose of lining their pockets. The Hippocrates company was often mentioned in these reports, which claimed that it used lucrative under-the-table benefits (kickbacks) such as stock options, royalty agreements, consulting agreements, research grants, and fellowships to reward doctors who prescribed its products.
As far as I had been able to tell, financial concerns never directly drove Dr. Sandemelir’s or Dr. Joyce’s decision-making. Being university employees, they were paid a salary and not on a fee-for-service basis. Moreover, their employer prohibited them from accepting kickbacks. On the other hand, Dr. Munodi was implying that the hospital and university administrators were operating not to personally benefit themselves but for the good of their organizations. Generally, the administrators of nonprofit and university hospitals are people in suits, businessmen and businesswomen, not doctors in white coats. For them, the institutions they run are fundamentally businesses.
Yet I didn’t believe that these reports about economic incentives had anything to do with August’s care. Somehow I continued to rationalize that Walker, Munodi, and Cohen were “old school” and that Joyce and Sandemelir were research scientists at medicine’s cutting edge. They represented the best and the brightest. They were avatars of the future.
A Life Beyond Reason Page 14