Just as Important
by Steffi Gauguet
The cardiac ICU phone buzzed on my hip. Again. Relentless. All the time. This time, a text from the nurse in Room 804. Again. THIS MOTHER REALLY WANTS TO TALK TO YOU. NOW.
All caps. Again.
ASAP, I sent back. I meant it. I really wanted to talk to her, too. She was concerned about her seven-year-old son being in too much pain. He had undergone a coarctation of the aorta repair the day prior. In comparison to what most of the other patients in this unit were going through, this was peanuts. He was extubated, awake, alert. His heart was working great, his blood pressure acceptable. All was good as far as his survival was concerned, unlike many of his neighboring patients in the cardiac ICU. They were all my patients. And as their doctor, a pediatric intensive care fellow in training, it was my job to take care of them all, as best as I could. No, better said, as best as they deserved. Not easily reconcilable standards.
I simply couldn’t get to the mom in 804 who wanted me to see her son. I was busy with another patient in distress.
“Her blood pressure is dropping. Forty over twenty!” The nurse’s urgent tone snapped me away from the ICU phone and the boy in 804. Holy shit! How was that possible? Why was it dropping so fast?
“Give her fifty mcg of epi,” I ordered. “And have another fifty ready.”
The nurse had been ready for it long before I spoke. She quickly administered the med. “Fluids next?”
“Yes, another five ml per kilo of normal saline.”
The cardiac surgeon shot me a sharp glance over his mask. He was not going to approve of our patient getting fluid overloaded. But I knew she needed to have a more stable blood pressure to avoid coding again. Her tiny newborn heart had formed only one properly sized ventricle, which was unable to meet her body’s blood flow. Earlier that day she had undergone open heart surgery to redirect important connections of her large vessels to allow better perfusion. But unfortunately, her heart was too stunned to even do the minimal work required to keep her alive. It was simply twitching feebly in her bruised and swollen thorax.
We’d given her all the support we could by providing deep sedation, muscle relaxation, perfectly balanced electrolytes and fluids, blood transfusions, and several infusions to support her heart muscle and blood pressure, but her heart had been struggling all day. The last resort now was to reopen her chest and reconnect her to an extracorporeal membrane oxygenation (ECMO) circuit, a type of heart-lung machine that would bypass her heart and give it more time to rest, while her body would get all the necessary blood flow. Going back onto ECMO could be rocky, though, and for a body as unstable as hers, everything had to be optimized.
“Fifty over thirty,” her nurse announced to the room, which was packed with clinicians: two cardiac ICU surgeons fully clad in blue sterile surgical gowns, magnifying glasses and masks covering their faces, two cardiac OR nurses busy handing them instruments, anticipating their every move, two cardiac ICU nurses administering medications, programming infusion pumps, repositioning little limbs under sterile drapes, another nurse documenting every event in the computer, a respiratory therapist gently squeezing mini-water-balloon-sized breaths into the baby’s stiff lungs, two perfusionists preparing the ECMO circuit, filling the tubing with more purple blood than was coursing through her newborn body, and me, providing the sedation and pain control.
Because I was in training at the time to become a pediatric intensivist with only a couple of months of anesthesia experience behind me, I felt horribly unprepared for this task. Pediatric cardiac anesthesiologists train for years to provide the proper sedation and medications for babies undergoing complex heart surgery. But when things needed to happen fast in this ICU, not in the operating room, it was up to a cardiac intensivist to manage. My supervising attending intensivist was tied up in another room with an equally sick patient who had coded for several hours off and on throughout the day. For the time being, I was the most qualified person to do what had to be done to the dismay of the cardiac surgeons, who did not even bother to learn my name. But they were busy with their own task, and aside from a quick glance in my direction, they let me manage her.
With her blood pressure a bit closer to a safe range, I allowed myself to draw a deep breath, straighten my back, and release my fist around the phone I was still clutching. It was midnight. My eyes darted from the monitor displaying her vital signs to the surgical field exhibiting the progress of the procedure.
I had not noticed her parents huddling in the back corner of the room. I had no idea what they had been told, or understood, about what was happening or how critical their baby girl’s condition was at the moment. They sat on the single narrow cot—pale, motionless, and quiet. I wanted so badly to take a few moments to ask them what they knew, what they wanted to know, explain what was happening. But I was trapped between the ventilator and the ECMO circuit, unable to move.
I had to defer talking to the mom in 804, as much as my heart went out to her little coarctation boy. I was sure he was in pain and probably scared. I estimated I would be stuck in this room for the next hour at least. There were three other babies I had to see before him—for blood pressure, electrolyte, and rhythm issues. Desperately, I tried to come up with some new idea to manage it all more efficiently. My feet ached in my clogs. I ignored my hunger and thirst, as well as my full bladder. I was aware that my thinking had turned slightly fuzzy. It took me a couple of beats to calculate the time I had been on this shift—seventeen hours. We were terribly understaffed. Not on paper. Everyone who was supposed to work tonight did show up, but the number of tasks that everyone was supposed to be able to handle was unmanageable, even if we had all been fresh and well-rested. This was the normal pace here. For a brief moment, I felt frustrated. Worked too hard, stretched too thin, always feeling like we did not have enough time to put out all the fires that kept enkindling around us. Despite the risk of another deathly glower from one of the surgeons, I called the nurse in 804 and whispered a verbal order of additional fentanyl. Not an elegant way of managing this. I should have gone to investigate his severe pain before treating it. I knew this. The nurse knew this. A bitter sting spread in my empty and queasy stomach.
*
Hours later, after having corrected a patient’s critically low Calcium, another’s elevated potassium, addressed dangerous hypertension in a third, repleted albumin and bicarbonate in yet another, checked the pacing wires on a teenager, and gave platelets to a toddler, I made it to Room 804. From the door, I was relieved to see the little boy was sleeping and seemed comfortable. A quick glance at his monitor confirmed his heart rate was in a low-normal range. The heart rate rhythm displayed on the monitor reassured me, even if it was not definitive, for in a cardiac ICU, kids might have altered rhythm or pacemakers artificially determining a heart rate different from what their little bodies could control. I took a deep breath and stepped inside the room. His mother waved me to her cot. I straightened my shoulders and stepped closer.
Her hair had partially come loose from her bun. A deep crevice cut through the lower part of her forehead, and her hands were fisted.
“This is not okay!” she snarled at me. “My son should not have to suffer for so long! What kind of place is this where a little child has to go through such pain and no one comes to help him?”
Tears streamed from her bloodshot eyes, but she held her chin high.
“I am sorry,” I mumbled. “I am sorry he—and you—had to go through this today. But I am glad to see he seems comfortable now.” I conceded, hoping she would take comfort in my assessment.
“He just fell asleep a few minutes ago after hours of crying in pain. Just because you didn’t see him suffer, doesn’t give you the right to say it is all okay now.” Her voice grew louder. “Why didn’t you come when we asked you? Or anyone here? This is a world-class hospital! We really thought we’d be better taken care of here.”
Afraid she was spiraling further into rage, I interrupted her and tried to explain why I had been MIA, why no one else had been able to swing by earlier, how busy things had been.
She stood up. Another strand of hair freed itself from the bun and uncurled in front of her reddening face. She continued her outburst of complaints and a fleck of spit landed on the hem of my scrub top. Suddenly I felt dead, beat, and worn out. I zoned out. The events of the day and night caught up with me like a towering wave I could not outswim, threatening to wash me away. I suppressed a yawn with all the energy I had left. I had tried too hard for so long to do all the right things, fast, efficiently, and still I had failed this boy and his mother. Frustration and disappointment rose in me, alongside with frank shock that I was yawning while this mom raged in front of me.
I lifted my eyes back to hers, which were full of fury and contempt. She spat and swore. Then I said something I will regret my entire life.
“Look,” I cut her off. “I understand you are very upset, and you have every right to be. I am sorry your son was in pain for so long. But you have to understand he is the healthiest patient in this ICU at the moment. There are children here who are much sicker than your son, children who almost died tonight and needed more attention than him.”
The moment the words left my mouth, all the fiery red drained from her face and crept up my neck instead, I wished I could have taken them back.
I wish I had been a better person that night, a better doctor, somehow figuring out how to take care of every one of my patients properly and timely. I should have known, even then, years before I became a mom myself, that comparative suffering does not minimize your own trauma. When your child is in pain, that is all that matters. That is all that should matter. The job of a parent is to protect their child, to advocate for them, to be there for them, to fiercely fight for them. In all times. And as a good doctor, I should be able to do the same for my patients—all of them: protect them, advocate for them and their best interests, and be there for them when they need me, no matter how intense or complex the situation. And if the system doesn’t allow all of this, at least I can listen and acknowledge their pain.
Steffi Gauguet is a pediatric intensivist, a mom, a triathlete, and writer. From Germany, she now lives in central Massachusetts, where she enjoys the fall foliage, apple pies, skiing the East with her husband and their (now) much faster kids in winter and frolicking with them in the Atlantic in summer.
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