Published on December 16th, 2020 | by Erin Pushman0
Living on the Emergency Line
Erin Pushman has written several pieces for MUTHA about her navigating her daughter Lucille’s complex medical conditions. You can find them here.
In the ambulance bay, the paramedics unload Lucille and make their way into a crowded corridor, weaving the stretcher through groups of other paramedics, patients, and police officers. I stay as close to my daughter as I can. But we get separated at the security checkpoint. I hold up my wrist to show the security guard I’ve already passed a hospital COVID screening tonight.
“Gotta do it at each hospital,” the security guard says. The paramedics start pushing Lucille’s stretcher. Stop, I think, but I stay quiet behind my mask. Three years ago, I promised Lucille I would follow her anywhere this disease took her. But tonight Lucille is in immediate danger.
Lucille had been failing all day, and after several hours of back-and-forth phone conversations with the nurse at her nephrologist’s office, my husband, Chris, and I decided to drive her to the closest emergency room. By the time we got there, Lucille’s blood calcium level and her heart rate were so high, she was in danger of having a heart attack.
“She’s already got a band,” the security guard tells the paramedics. The paramedics stop. From here, they will push Lucille past the emergency room, through the main campus of the Carolinas Medical Center, into Levine Children’s Hospital, and up to the nephrology floor, where she will be treated immediately. “It will only take a minute,” the guard says.
Only a minute. I look toward my daughter on the stretcher. Lucille’s eyes are half-closed. Her hair, always messy, is a tangled mass around her head. But she is on IV fluids at a high drip-rate her nephrologist ordered, and her heart rate is back to normal. One of the paramedics is also a nurse and has been monitoring her heart since we left the free-standing ER to come here. We are paused in the entrance to the biggest hospital in Charlotte. What is one more minute now?
I turn to the security guard and mumble “okay,” expecting him to point me toward the screening station. Instead he leads me back out into the ambulance bay, maneuvering me through the mask-wearing crowd—there is no social distancing in the ambulance bay late on a Friday night—until we reach the screening station. For some reason, the security guard stays with me. Maybe he is kind, or maybe I look as lost as I feel, but I’m relieved to have someone stand beside me for a few minutes, showing me what to do.
When we get back to the hospital entrance, the corridor is somehow more crowded than before. I cannot see Lucille or her stretcher, only a mass of dark uniformed shoulders and masked faces. Behind my own mask, I take a breath.
“She’s right there,” the security guard says. “Just walk on through.” I tell him “thank you,” and bump into people as I make my way to my daughter. Lucille’s eyes are still half-open, but she does not see me.
“I’m here,” I say as the paramedics start moving again. Lucille does not answer. I follow Lucille’s stretcher through corridors and into elevators. We reach the nephrology floor of the children’s hospital from one direction, as my husband, Chris, is entering from another. Two nurses and the resident on call are waiting for us. Lucille rouses as the nurses and paramedics begin the complicated process of transferring her from stretcher to bed, from one set of monitors and IV poles to another. She is still wearing her fringed ankle boots, and I slide them off as they move her onto the bed.
Lucille has hypercalcemia again. Hypercalcemia is a life-threatening condition when it is moderate or severe. Tonight, Lucille has a severe case. The calcium level in her blood serum is 17. At that level, she is risking cardiac arrest. She is also in acute kidney failure. In one of the medical journal articles I’ve read, a hypercalcemic child Lucille’s age with a calcium level of 15.2 was noted as “barely” recovering. In the nearly three years since Lucille started battling a rare and aggressive tumor, this is the closest we have come to losing her.
This is Lucille’s third episode with hypercalcemia. Her second was two weeks ago. That day, Lucille’s hypercalcemia had been moderate, a blood serum level of 13, dangerous enough to bring us to the hospital—but not by ambulance. She’d stayed in the hospital two days and gotten an intravenous infusion of Zometa, which brought her calcium back to 9, a normal level.
Lucille’s nephrologist, Dr. McKay, a kind, careful man whose research credits include publishing a landmark paper about hypercalcemia in children, had been conservative with that first dose of Zometa. Chris and I had appreciated his caution because Zometa is a drug with frightening side-effects, including osteonecrosis—death—of a child’s jaw.
Lucille’s side-effects had been difficult but manageable. Her jaw stayed healthy, but she spent one week with a high fever feeling so sick she could not leave her room. Three days after the side effects ended, she started getting sick again.
Chris and I watched her decline for two days. We thought the side-effects from the Zometa were kicking in again. When your child has been sick for years, it is hard to know at what point the sickness becomes something to worry over. After she spends a week sick in bed, one more day sick in bed doesn’t feel unusual. It is hard to tell when to call the doctor.
We were wrong. By this morning, Lucille was too weak to walk down the steps.
All this morning, Lucille lay on the sofa while I tried to teach my classes online and exchanged questions with Dr. McKay, his nurse relaying messages between us. The nurse: It was not likely a child could have hypercalcemia again so soon after an infusion of Zometa, and Lucille’s calcium was normal in her last set of labs. Me: But her condition was declining as I watched her. Nurse: Dr. McKay ordered labs—she should come to the clinic to have them drawn—because he couldn’t know what was happening without seeing the calcium level. Me: I understood. But Lucille was too sick to come to the clinic, which was located inside the main hospital complex. She did not have a fever, but she was weak and nauseous—we would never make it past the COVID screeners. Nurse: If she was that sick, she should be evaluated for COVID. Me: We don’t see how she could have COVID. Could this be the Zometa side effects kicking in again? Nurse: No. Me: Could you get us past the COVID screeners, so she can have the labs drawn. Nurse: She would ask Dr. McKay.
By 1 p.m., Lucille’s eyes were sinking in her face, and she was difficult to rouse. Chris came home, and we talked through the options while we waited for the nurse to call us back. Her pediatrician had closed at noon. The lab orders were in. Our daughter was clearly not okay, and we did not think she had COVID. We had promised each other that if she had symptoms of hypercalcemia again, and a physician would not see her immediately, we would take her to an emergency room. But facing an emergency room during COVID felt like a dangerous prospect.
“Let’s just start driving toward the lab at Levine,” Chris said. “If they call back and say she can’t come in, we will go to the emergency room.”
We spend another few minutes making plans for our two young sons. Since I was teaching today, the babysitter was already here. She said she could stay an hour or two late if we needed her. After that, one of us would have to come home–or come up with another plan.
Dr. McKay’s nurse called back before we’d gotten out of our neighborhood to say Lucille could not come into the clinic until she was evaluated for COVID. We drove to the closest emergency room, ten minutes from our house. The ER was in the same hospital system as Levine Children’s, so if we were right, and Lucille was hypercalcemic again, they could communicate directly with Dr. McKay. If we were wrong, and she had COVID, we would be relieved.
In the ER, the doctor decided to start IV fluids and draw her labs to check her calcium level before doing the COVID swab, a decision that may have saved her life. When the calcium in her blood serum came back at 17, the doctor hooked her up to a heart monitor, ordered an ambulance transfer to Levine, and called Dr. McKay, who increased the fluids.
Hours collected the way hours do in emergency rooms. As the saline dripped into Lucille’s vein, and her heart rate came down, we made arrangements with my cousin, who lives just outside the city and said she could stay with the boys when the sitter had to leave.
So now we are here, on the nephrology floor in Levine Children’s Hospital, and Lucille is a child in acute kidney failure. Again.
It is near midnight. Lucille is drowsing in the hospital bed, and the nurse is drawing another set of labs. The resident (who looks impossibly young and well rested) is standing at the foot of the bed, explaining the plan. Tonight, Dr. McKay wants Lucille to have an infusion of a different drug, Calcitonin, to begin lowering her calcium immediately, and more IV fluids to flush out her kidneys.
I know, without being told, that Lucille has survived the most perilous part of this episode of hypercalcemia. I also know she will not be out of danger until the amount of calcium in her blood drops–a lot. I know that in the morning, Dr. McKay will come to Lucille’s hospital room, and he will order another infusion of Zometa. I know all of this without asking questions, but I ask my questions anyway—what else is there to do? The resident answers them with the measured kindness of someone who has never been as sick as the child in the hospital bed.
The heart monitor shows a normal rate, a steady rising and falling on the screen. Chris kisses me and kisses Lucille then leaves to spend the night at home with our boys. I wash my face, store my contacts in two specimen cups, then slide into the hospital bed with Lucille. I watch her heartbeat peek and dip on the screen and run my hands over her chest.
Lucille is fully asleep now and still wearing the graphic tee shirt she had on when we brought her to the emergency room. It reads “Work of art… in progress,” and has blotches of color splashed all over the front. Beneath it, I can feel the electrodes stuck to Lucille’s skin.
Hypercalcemia is rare in children. Sometimes, as in Lucille’s case, the hypercalcemia is caused by a side effect from another drug therapy. Sometimes, the doctors do not know how long a child will be at risk, or how many times they will have to treat her before hypercalcemia stops happening. Lucille’s hypercalcemia is a side effect of drug Denosumab, the drug used to treat her tumor. The problem is too new and the research too limited for anyone to make a well educated guess.
Tomorrow, Dr. McKay will come, and Chris and I will agree to another infusion of Zometa. Lucille will be unsteady on her feet, and we will help her to the bathroom, unhooking the heart monitor leads and bumping the IV pole over the threshold each time. Lucille will spend four more days in the hospital before her calcium is low enough to go home.
Eight days later, Lucille will be hospitalized with hypercalcemia again, and she will have another IV infusion of Zometa, and we will help her to the bathroom, and I will sleep beside her in the hospital bed.
Sometimes, it feels like our family is living on the emergency line. We take Lucille to have her blood drawn once a week. We call Dr. McKay’s office immediately if she starts to feel nauseous or lethargic. But Lucille has spent the last three years often feeling sick or lethargic, and each infusion of Zometa can make her feel the same way. It’s hard to tell the difference between “regular” side-effect sickness and hypercalcemia sickness. The night we sailed through the city in an ambulance, with Lucille’s calcium level so high it was threatening her life, we made the right guess. But if we had figured out her symptoms a day earlier, or even called Dr. McKay, we could have kept our child a little more safe.
We know other families are living on the emergency line. For a few others, the line is hypercalcemia. For others still, the line is a seizure disorder, or a cancer, or an autoimmune disease, or a critically ill parent, or…. But living on the emergency line is like the crowded ambulance bay on a Friday night—you are alone even when a crowd of people is standing before the wide emergency room doors.
The part of my child’s hypercalcemia that is hardest for me to come to terms with is this: She could have had a heart attack on the sofa while we were deciding what to do. It’s easy to say her doctor should have known, but a case like Lucille’s does not exist in medical literature. And when we did call—a day and a half after she started getting sick again—the first thing Dr. McKay did was order labs to check her calcium level. As the parents of a kid struggling with both drug therapy side effects and hypercalcemia, we have to remind ourselves what we have known all along: We are the experts in our own child.
So we live on the emergency line. We know we can’t treat our daughter like we are afraid she will collapse at the first twitch of wind. We can’t refuse to let her be alone in a room for five minutes because we’ve developed a sudden fear of childhood heart attacks. But living on the emergency line means we’re prepared to pivot at any moment.