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August 6, 2009

Kiss Your Baby Now

Life in the hospital always has an underlying tension, as the situation can change dramatically over the course of days or moments. We watched Colin’s condition deteriorate gradually over several days, with a mounting sense of urgency from the floor pediatricians. We later realized that he was seen by the “pediatric response team,” which is a mechanism for assessing a child who may be in a critical situation.

On Friday, Saturday and Sunday nights, Colin received a lot of attention from the doctors with EKGs, chest x-rays, blood draws and other pokings and proddings. The concern started with watery diarrhea from the C. Difficile infection, yet this alone did not adequately explain his strange heart rate pattern and worsening oxygen saturation in his blood.

However, his heart always seemed fine, his arterial blood gas showed nothing abnormal, and his heart rate ultimately became more normal and steady (the concern was that it was either beating too fast or too slow).

On Sunday afternoon, he seemed pale, unusually listless and his body was below normal temperature; something was clearly not right about him, although nobody knew what it was. The primary concerns related to issues other than hydrocephalus, though hydrocephalus was of course the suspect on the top of the list.

On Monday morning, the results of a blood culture from Friday came in showing that he had a yeast infection in his blood. Yeast takes longer than most other organisms to grow, so it wasn’t surprising that it took so long. It is possible that the infection originated at the site of his port, but irrespective of that, the port had to come out because it was a contaminated foreign object in his venous system.

General surgery was able to fit him in on Monday to remove the port, which ultimately turned out to be the locus of the infection. Between that and the initiation of IV treatment for the fungemia (fungal infection of the blood), he improved dramatically on Monday. Before falling asleep, he was agitated and moving around in his bed. It turns out that he wanted to sit up on the edge of the bed, which now constitutes significant PT for him.

Colin’s desire for normal activity was a tremendous relief, especially given the downward slope in his overall condition that we had been seeing. In retrospect, it is always easier to see the progression than it is at the time. However, we are very pleased at the concern expressed by the doctors in solving that mystery.

Following the encouraging news, Mom was looking forward to a good night’s sleep and peaceful rest knowing that Colin was on the mend. However, this was not meant to be.

At around 2 in the morning, I woke up to the full lights on in the room, monitor alarms blaring, and the sound of medical staff treating the patient next to us and reporting on her condition and her state at various time. Her name was Deniz, a one-and-a-half-year-old girl with leukemia who had spent 10 months in treatment with Memorial Sloan Kettering but had moved to NYU for the last month.

I often saw her mother in the hallways of the main pediatric floor, lumbering to the kitchen or outside with her head tilted to one side as if too heavy for her weary neck to support. Aloof and sad, she was a familiar spectre who rarely engaged anybody, though I suspected from her accent that she was Russian.

One day, she looked at me in surprise and said, “You’ve been here a long time.” We exchanged cancer diagnoses and basis stats on our children (age, gender, name). I asked where she was from and told her that I spoke Russian, but before I had much time to scrape the rust off my conversational Russian, one of Colin’s doctors approached. Understanding completely, she released me and went on her way.

Over the course of several days, Tanya and I became friendly. I didn’t have a chance to speak Russian with her again but got periodic updates. How are things?

Not good. Infection after infection.

Deniz followed Colin into the PICU, taking the spot next to his on Monday morning. With both children infected with C. Difficile, it made particular sense. I had never seen Deniz before because, both neutropenic and infectious, she was confined to her room. Despite many months of chemo, her face was full, a beautiful pale child with wispy hair and perfect features.

All day, Deniz whimpered and fussed. Tanya spent most of the day sitting in a chair and holding her, kindly refusing offers of beverages or extra blankets. Martha came to play the guitar and sing music while Colin slept nearby in post-surgical indolence. In the early evening, a tech came with the portable x-ray machine to look at her lungs, then returned for a second shot after the first did not adequately capture images of the top of her chest. Her parents considered refusing the image, since children with leukemia (or other cancers that entail radiation, for that matter) should have only limited exposure to radiation. In the end they relented, but only after venting frustration.

In retrospect, it was no surprise that a medical emergency would coalesce around that little body in the wee hours. There is a certain tenor to the conversations and urgency in the activity that surrounds critical care, even when its practitioners are relatively calm. In the haze of waking up, I overheard one voice report that her heart rate had been 13 or 14 beats per minute, impossibly low.

My first thought was of Tanya, whose husband had left for home earlier in the evening. I found her standing in the doorway looking befuddled and dazed, not knowing much more than I did. She evidently had been awoken and ushered to the sidelines, where I had found her with arms crossed in front of her chest. The sleeper chair that she had been using (dragged in from the regular pediatric floor, as the PICU only allows recliners for easy access to patients in the event of an emergency) was in the hallway with a pillow and blanket on top.

As I was thinking that she ought to call her husband, I saw that she had already raised the phone to her ear. She told him she thought that Deniz had stopped breathing, but then she lost all words. I took the phone from her. “Come now.”

I didn’t know any better what the medical situation was, but it certainly mandated the immediate presence of both parents. The exact events and my relative awareness of them are unclear. The doctors were calling for an airway specialist and the hospital-wide intercom system hailed one to 9 West. When he did arrive, I directed him to the right bed.

At some point, I had realized that a doctor was resuscitating Deniz, arms pumping rhythmically as she attended to various details. The epinephrine shots weren’t working; time to try something else. Directions and orders for medications fired across the room as the bulk of the nursing staff and physicians mobilized around the crib.

Finally, a tense quiet as Deniz’s heart beat unassisted. An order for an epinephrine drip went out, but before it returned, the doctor’s hands were busy again. The calm eventually returned but did not persist. The cycle repeated.

I grasped Tanya by the shoulders, afraid that she would hit the floor if I didn’t. I insisted that she sit down, but she shook her head. “I’m going to be sick.”

When she returned from the bathroom, I did convince her to sit and continued to hold her as we sat in stunned silence witnessing the whirl of activity around us like dogs listening to people converse. A doctor came out and explained what had happened, which was largely a mystery. Deniz’s blood pressure had dropped, they gave her IV drips to help bring it up, and she soon after destabilized. No, they didn’t administer anything unusual, and nothing that she hadn’t already received before.

We eventually walked down to the other end of the unit to get something to drink. On the way back, she said, “You know Russian. You know what this is? Pizdetz.”

I affirmed my familiarity with Russian obscenities. It was the only other time we spoke Russian besides our first encounter.

Tanya wanted to go out for a cigarette, but I counseled her against it. Although we really had no idea what was going on, the situation was clearly too unstable for her to leave, especially before her husband arrived.

When he did come in, he began wailing immediately and wringing his hair – there was no consoling him, but I soon realized that it wasn’t called for. A tall, dark Turk, he came with a shorter man with similarly thick brows who I had assumed might be his brother but turned out to be a friend, also Turkish. Their children were almost the same age.

Finally, Tanya escaped to get her cigarette. I let her go alone, but when she returned, she sought me out with her eyes. I gave her a quick report (still alive) and continued to stay by her side. Although her husband was there, I realized that he was in the midst of his own process of digesting the situation that neither demanded intervention nor provided her with the anchor that she needed.

After not very long, a doctor approached them and explained that they had been working on Deniz for over half-an-hour and would not be able to keep it up for much longer. Tanya was in tears and her husband cried, “Don’t stop!” a mantra that he would repeat until they finally did.

I later came to understand that he was really saying, “I haven’t given up on you.” There is a certain endurance that comes with the love of a child, even in the face of dire circumstances. To varying extent, it fuels all of the parents who have children with life-threatening diseases, but it reaches its most frenzied and exhausted form as the situation becomes increasingly desperate. I saw the precursor to this pacing the halls of the hospital in the weeks leading up to my first encounter with Deniz.

Despite the doctor’s proclamation, they did continue to work on Deniz and appeared to achieve some degree of stability. The population of staff around the crib began to dwindle and it seemed like we had crossed a new threshold. It seemed possible to relax, or perhaps more precisely to release a degree of tension.

However, the monitors resumed their klaxon call and the doctor’s arms were diligently working to do what Deniz’s heart refused to do any longer. After about an hour total of tireless resuscitations, the doctor came out and said that Deniz’s breathing was fully supported and they simply weren’t able to get her heart to beat on its own for longer than five minutes. This was the last cycle.

The staff backed away and we approached the crib. Deniz’s parents stood stunned, staring at her small body splayed out at an unnatural angle on the crib, not a proper position for a child to be sleeping. I kept glancing at the main monitor, which was showing an impossible trail of jagged peaks and valleys, but soon realized that I needed to turn and look at the monitor on the crash cart. 23, 22, 23. A heart beat erupted on the screen, separated from the next by a long flat line.

In a moment of clarity, as I contemplated this moment that dragged inexorably into the next, I grabbed Tanya’s shoulders, leaned close to her ear, and whispered, “Go kiss her while her heart’s still beating.”

She moved quickly as if suddenly roused from sleep. After she began ministering to her child, her husband bent down beside her. Those last words of comfort and love remained private among them. When I turned back, the numbers on the crash cart had devolved into morbid dashes and the space between the heart beats grew longer still. The normal wave form eroded into a simple peak, then there was nothing.

Most people’s cultural understanding of medical emergencies is greatly informed by movies and television shows that depict dramatic death, doctors shaking their heads and a machine generating an ominous monotone buzz. The reality of it seemed much more ambiguous and organic.

There was not a distinct moment of death, even as far as I could detect on the monitor of the crash cart. How do you know that the last heartbeat is the last? This is a scientific and perhaps philosophical curiosity, but it is of absolutely no consequence. The doctors did record a time of death and noted it as Deniz’s parents mourned the loss of their only child.

Tanya had not wanted children, she told me. However, after falling in love, things changed and Deniz blessed their lives, a child who had remained happy and playful even through months of chemo. I recalled what a nurse told me as my father was dying, “They come back to you after they’re gone.” She explained that the old memories of a person in full vitality supplant the more recent images of infirmity and death.

After some time alone with Deniz, I asked if they were ready to have the tubes and wires removed so they could hold her as they should. I went with Tanya to their longstanding room on the regular pediatric floor to fetch a baby blanket. They wrapped her in it and held her and loved her.

I did not speak to either of them after this, not that there was much of anything to say. For most of the time I was with Tanya, I said nothing or told her that I was so sorry. Although I’d like to attend the funeral, it is irrelevant whether I ever speak to Tanya again. We shared an unspeakable intimacy during the night that binds us together, and she trusted me as a person who could provide her comfort as she faced the worst thing a parent can face.

It was an honor that one never wants but gladly steps up for that had special significance knowing how guarded Tanya was. I hope never to watch another child die, mine or anybody else’s, and I will be changed forever.

Tanya still haunts the hallways, though mostly in my memory. When Colin was deemed healthy enough to return to the floor, they moved us into Deniz’s old room, with Colin still isolated with the C. Difficile infection that he likely contracted from her. There was an obviously uncomfortable parallel to the room assignment, but I have to live with a certain detachment anyway. Survivor guilt balances against the fear that Colin will slide down a similar path.

However, he had fared well out of the PICU, where monitor alarms became intolerable to both of us. A late night admission of a sick but not critically ill child distressed him immeasurably and was one of the reasons that I have been unable to provide updates on his condition. He has needed additional comfort in recent days, certainly a reasonable expectation given the duration and seriousness of his hospitalization but possibly influenced by his own experience during Deniz’s death.

When I left his side, he was sound asleep. However, during the time that they worked on Deniz, I was unable to get around the crowd surrounding the crib to check on him. I assumed that somebody was keeping an eye on the monitors (I did observe a nurse covering patients for another nurse who was in helping Deniz). At one point, I thought to catch the eye of one of the nurses to ask her to look in on Colin, but the opportunity never arose.

Colin has continued to endure frequent procedures and tests. Tuesday, he became a pincushion as the nurses attempted in vain to perform blood draws for cultures and tests He had a peripherally inserted catheter (PIC) line inserted on Wednesday to facilitate IV medications and blood draws. The same night, he had yet another therapeutic lumbar puncture to drain off more CSF because of hydrocephalus concerns related to low heart rate during his sleep, but that yielded almost nothing. Thursday, another CT scan.

Overall, the doctors say he is doing okay but that he desperately needs the shunt. While the infections have cleared, he still has diarrhea from the C. Difficile, and Dr. Wisoff says it is ill advised to insert the shunt into the peritoneal cavity while there is an active infection, as the bacteria can migrate out of the intestines and into the shunt. Thus, he is slated for shunt insertion on Monday, assuming that the diarrhea clears. We are also hoping to install a new port then if possible.

Colin continues to have odd heart rates, either too high or too low, though these are not independently dangerous. He also has a fair amount of congestion that continues to be (thankfully) restricted to his upper airway and not his lungs. He has been cleared by endocrinology, pulmonology, and infectious disease, who all report no significant problems.

The continued concern about Colin’s health is unsettling, but we are assured it will resolve. “Patience,” we are told. But what else is there? Nothing that will help him. We look at his cherubic face and shower it with kisses. His brother, so vibrant and dynamic, gets the same treatment when he holds still enough to tolerate it.

Kiss your baby now.

Kiss your baby now.

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