“We spent two days in the ER waiting for a bed”: One family’s nightmarish experience at a pediatric hospital

Alysha and Matt Pirie live in Burlington with their two children, five-year-old Elora and two-year-old Cohen. Over the past two years, Cohen’s recurring respiratory issues have landed the family in the emergency room ten times. Earlier this month, they had to take Cohen to McMaster Children’s Hospital, in Hamilton, at the worst possible time: the GTA’s pediatric hospitals are facing an unprecedented number of Covid, RSV and flu cases, which the medical community has dubbed a “tripledemic.” Here, Alysha and Matt explain what it’s been like to navigate this overburdened system.

—As told to Ali Amad

Alysha: In the early morning of November 10, I got up from bed to check on our two-year-old son, Cohen. When I found him coughing, I knew something was wrong.

Cohen has had respiratory difficulties since he was born. In 2020, when I was 17 weeks pregnant, my water broke unexpectedly—a condition known as preterm premature rupture of membranes. Because of that, my body had low levels of amniotic fluid, which is important for a baby’s lung development. Cohen’s lungs weren’t growing properly as a result.

Our medical team at McMaster Children’s Hospital decided to deliver Cohen as soon as it was viable—nearly three months before full term. Thankfully, everything went well with the birth, but Cohen had to spend just under six months in a neonatal ICU, where he received several kinds of breathing supports, including intubation.

Our son now has asthma, which is triggered by respiratory viruses. His lungs can’t handle even a common cold. Since he first came home, in January 2021, he’s gotten sick with respiratory viruses about a dozen times, including one bout of pneumonia. In less than two years, he’s been admitted to the hospital 10 times.

Because he gets sick so often, we keep Cohen on a monitor at home to track his oxygen levels. After I found him coughing, I realized his oxygen was dangerously low, and it stayed that way even after I gave him a course of puffers. That’s when we knew, around 5:30 a.m., that we had to take him to the hospital right away. Normally we’d drive him there, but we called an ambulance because he needed oxygen immediately. We’d never had to do that before, so we were both more nervous than usual.

Matt: I rode in the ambulance with Cohen while Alysha stayed at home to be with our five-year-old daughter, Elora. It was heart-wrenching to see Cohen in pain and to be unable to do much about it. When he’s well, he’s the happiest little guy you’ve ever seen. When he’s sick, he just doesn’t understand why he feels so awful. In that ambulance, all he could do was cough and cry.

Initially, we were sure that Cohen had RSV. We’d seen news about the rise in RSV cases this fall, and he’d actually caught the virus around the same time last year. Cohen had spent two weeks in the hospital that time, so we wondered if we were going to endure something similar again.

We were aware that pediatric hospitals had been struggling to cope with an overflow of patients for the past couple of weeks, and we were worried that McMaster wouldn’t have space to treat Cohen right away. When I stepped into the emergency waiting room, I could immediately tell that everything was different from the last time we visited, this past June.

Typically, Cohen would be triaged in less than 15 minutes because of his long-standing issues. After being triaged, the longest we’d ever waited to be taken into an emergency examination room was under an hour. Once he’d been given oral steroids and the necessary breathing support, we would usually wait about nine to 11 hours before Cohen got a bed. But, this time, the emergency waiting room had a sign that said the wait time just to see a doctor for an initial examination was eight to 11 hours.

Despite the backlog, Cohen was triaged as quickly as normal, and the staff handled everything with a sense of urgency. McMaster has two resuscitation rooms for serious cases like Cohen’s, and luckily one of those rooms was available, so he got right in after being triaged. I remember asking a nurse, “What happens if another urgent case comes in and needs a resuscitation room?” She kind of laughed nervously and said, “I don’t know.”

Alysha: I came in a couple of hours later after dropping our daughter off with Matt’s mom. Soon after I arrived, Cohen’s breathing stabilized. In the end, it turned out that he hadn’t caught RSV—it was a cold caused by a rhino/enterovirus. A bed still wasn’t available in any of the wards, so he was moved into a regular emergency examination room. Typically, the hospital staff would tell us they’re getting a bed ready or how long we could expect to wait for a bed. But, this time, none of them had any idea when one would free up.

We could tell the staff were tired. The nurse helping us was on a 12-hour shift and hadn’t taken a break yet. It was frustrating for us to wait for a bed with no end in sight, but we have a good rapport with the staff, and they know we understand how tough their situation is. They’re frustrated too, because they want to give a better level of care than they’re capable of providing with the resources they have. They don’t want families stuck in the waiting room for eight to 11 hours. But that’s just the reality right now.

Matt: Alysha had to leave that morning to get back to work, so I booked the day off to stay with Cohen. The challenge of being in the emergency room instead of a ward was that Cohen couldn’t get the same access to rest and treatment there. The ER is brighter and noisier, especially these days, since it’s filled with unwell children who are frightened and in pain. There are strangers, loud PA announcements and alarms going off all the time. It’s an overwhelming environment for Cohen and the other children, many of whom are crying at any given time of the day or night. This also makes it difficult for Cohen to sleep, which is important for his recovery.

Because ER nurses care for more patients than nurses in wards do, we had to give Cohen his medication ourselves, including one he needs every two hours overnight. A lot of Cohen’s nutrition is delivered through a gastrostomy tube that transports food directly to his stomach, and it took the staff 12 hours to give us the special formula he requires. It would have taken several minutes to get that formula if we’d had a bed in a ward. He needs the formula three times a day, and it’s especially important when he’s sick, since he struggles to eat food orally because of his coughing.

Alysha: The next morning, I took over for Matt so he could get some sleep. Thankfully, we both have the flexibility of managing our work schedules, so we’re able to figure things out when these emergencies happen. But we still had no idea when Cohen would get a bed, let alone be safely discharged.

Finally, around 10 p.m. that night, after two days in the ER, we were informed that a bed was available at Joseph Brant Hospital, which is close to our home, in Burlington. In the end, it took four times as long (and twice as many hospitals) as normal for Cohen to get a bed—but things got much easier after that. Two days later, Cohen was allowed to return home. It was a relief to not have to be in the hospital anymore, but it was a short-lived one. We were still worried that he’d catch RSV, especially with his older sister potentially bringing viruses home from school. And we knew that would mean another long hospital admission.

Matt: Sure enough, Cohen got sick again the following week. We took him back to McMaster, and this time he tested positive for RSV. To cope with the overflow, the ER had been completely restructured since our last visit. About 20 emergency care and ambulatory care rooms had been converted into in-patient rooms, compromising the ER’s capacity to care for more admitted children.

To help him breathe, Cohen was placed on pressure support in an emergency examination room. Normally, that would have been done in the pediatric ICU. We spent another 40 hours in the ER before a bed became available in the ward. His condition remained serious, and he was moved to the ICU the next day. He’s been receiving pressure support there ever since.

In our experience, there’s usually one nurse caring for each child in the ICU, but each nurse was now handling two children. We’re so grateful that the ICU nurses have risen to the challenge. We don’t know how long we’ll have to be here, so we’re just in a holding pattern, waiting and hoping that Cohen will get better soon.

Alysha: As we wait in the hospital once again, we’re faced with constant worries: What happens if Cohen needs to go to an ICU again and McMaster is full? Where are they going to send us? We’ve heard of hospitals sending children far and wide across the province. In one case, the shortage of beds almost forced a hospital to send a two-year-old with RSV to an ICU south of the border, in Buffalo.

Matt and I usually rotate shifts every 24 hours because it’s really hard to be in the hospital for a long period of time. That way, we can both still work and take care of our daughter. But, if Cohen gets sent to an ICU in London, Ottawa or even Buffalo, I don’t know how we would make that work.

Matt: We have the means, flexibility and family support to make all of this feasible, but the majority of families with medically complex children aren’t as lucky as us. These long hospital admissions are hard enough on us—I really can’t fathom the toll such an experience would take on a family with fewer resources.

Alysha: We’re really frustrated that, even after the worst of Covid, Ontario’s health care system remains so under-resourced that it’s verging on collapse. And that collapse is definitely looming. We believe that the least the province could do to help hospitals right now is bring back mask mandates. The mandates we had last year helped hospitals handle the seasonal influx of patients. Last fall, we waited only half a day for a bed, not multiple days.

In the absence of a government mandate, we’re forced to protect ourselves as best we can. Our daughter has started wearing a mask in school, and we mask up whenever we go out in public. Vaccinations for Covid and the flu are also important for relieving the pressure on hospitals, as is keeping your child home when they’re sick so they don’t spread anything to other children. If you don’t take these precautions, your child may not end up in the hospital, but mine will.