A COVID-19 premonition, and a warning: our son’s battle with pneumonia

As COVID-19 cases continue to surge around the globe and people begin to numb to the fear of a pandemic that’s gone on for too long, I’ve noticed that personal anecdotes from those grappling with the virus have been missing from the recent headlines. Having spent a month in the trenches with my son as he battled a COVID-like pneumonia, I am still haunted by daily flashbacks to the experience. Here is our story. I hope that it will encourage everyone to continue to take this seriously. 

Six months ago, while a strange pneumonia was beginning to appear in Wuhan, my husband and I were taking turns sitting by our son’s hospital bed as he fought for his life. Just days before, Isaac had been a bubbly, energetic 8 month old, crawling around the house at full speed and pulling himself to a stand using any object he could before breaking into hysterical giggles.  Except for some colds and a nasty bout of gastro, he was as healthy as could be, something we used to take for granted. It was the Friday evening before Thanksgiving. My husband was in the US for a conference, and Isaac and I were having a fun mother-son week at home in Geneva. We were supposed to go to our first baby music class that afternoon, but a small dry cough that he’d developed that morning made me think otherwise, deciding to keep him home to bang sticks against the tupperware in the kitchen instead.

On Saturday morning the cough was worse, Isaac was lethargic, and he was starting to look pale. By Saturday night he was burning up with a 103 degree fever and was completely exhausted. I gave him his first-ever dose of Tylenol, hoping that he would wake up happy and healthy on Sunday morning.  But 12 hours later, his fever had not subsided and was no longer responding to Tylenol, and his chest was going in and out at a frighteningly rapid pace – I counted 80 breathes a minute. I called Geneva’s pediatric emergency hotline and they told me to go to Geneva’s main hospital, the Hopital Universite Geneva (HUG), pediatric emergency room immediately. I wasn’t anticipating such urgency, and fought the panic rising in my chest while throwing a few items in the diaper bag in case we stayed a while. With a deep breath, I buckled Isaac into his car-seat and headed to Geneva, glancing in the mirror constantly to reaffirm that he was still alive. It suddenly felt like the world had stopped and the two of us had entered a parallel universe, one in which the only thing that mattered was Isaac’s health.

Triage was quick and we were seen immediately. He had improved slightly since we left, maybe due to adrenaline, and after a few hours of observing his temperature, breathing rate, and oxygen levels, receiving a negative quick RSV test, and despite his flailing chest, flaring nostrils, and higher than normal breathing rate, they sent us home with the diagnosis of bronchiolitis and instructions to come back if he got worse. I was terrified. Compared to normal he was still so sick, and his breathing already looked so distressed that I was not confident I would know the moment it went from bad to worse and became an emergency.  Once home, I set Isaac on the bed. He tried to crawl across it to the headboard to knock down our picture frames, a game he plays daily, and was too breathless to go more than a step before giving up and lying face down, eyes closed with exhaustion. My heart seized up in fear at seeing him so helpless, so I lay him across my chest and we stayed like that, him sleeping, me watching his heaving chest, counting his breathes, until sunrise.

On Monday morning he seemed unwell but stable. We had an appointment with the pediatrician to check his lungs. I felt so grateful to again be in professional medical presence, and our doctor agreed that bronchiolitis was the best diagnosis, echoing the ER doctor’s sentiment to “keep an eye on his breathing, come back if he gets worse, but he should get better”. But after a few hours back at home I couldn’t stand how grey and limp Isaac was, so I decided to drive back to HUG for another opinion, planning to camp out in the car until he seemed markedly better if they sent us home again.  This time it only took a few minutes before a canula was put in his nose with supplementary oxygen and we were admitted for the night. At the time, having never stayed in the hospital before except for Isaac’s birth, an overnight stay felt like a monumental experience, but I was also immensely relieved – the decision of how his illness was progressing was no longer my responsibility, as his vital signs were now brightly displayed on a monitor with warning bells that rang each time they deviated too much from normal. But every doctor and nurse who entered kept repeating the mantra that, in a day or two, he should improve and we could go home.

On our first night we roomed with a 13 month old with the same diagnosis. She was bouncing off the walls. At this point, Isaac was unrecognizable, sleeping almost all day and night as if he were a newborn, and when he was awake he lay still in my arms, focusing 100% of his effort on breathing. At night, the nurses came every two hours to deliver a breathing treatment, then washed both babies’ noses with saline before suctioning the mucus out. It was 30 minutes of pure torture for them, which meant constant screaming and no sleep for anybody. In the morning we were all worse than where we started. By Tuesday night, Isaac had stopped eating except for a constant Tylenol and Ibuprofen diet to keep the fever down. The nurses slid a feeding tube through his nose and down his throat, hoping that by focusing only on recovery, on Wednesday he would wake up with renewed energy.

Wednesday was no different. Our 13 month old roommate was discharged and another baby with the same diagnosis took her place, also full of energy. I grew increasingly uneasy that in contrast, Isaac seemed so much sicker than these patients. Chris flew in on Wednesday night, arriving at midnight with cake and a full Thanksgiving menu planned, anticipating we’d be discharged and celebrate on Thursday. It didn’t take long for him to realize we weren’t going anywhere soon.

On Thursday morning, Isaac was really struggling. His oxygen level was low even with supplementary oxygen, and he could barely open his eyes. The doctors told us this could still be normal, bronchiolitis runs a very long course. He perked up a little bit around mid-day but by evening was back to looking incredibly sick, heart and breathe racing. Another doctor checked him and became concerned that he was not improving and alarmed that his liver had become noticeably enlarged, which can indicate a heart infection among other things. She gave orders and the medical team went into a flurry of action, commencing a battery of tests. We tried to stay strong but we were wearing down. We called my parents and broke down. They broke down. We hung up when the cardiologist wheeled in an EKG machine to check Isaac’s heart, breathing a huge sigh of relief when he told us it was normal. Next was a chest X ray, which immediately identified the problem – pneumonia. There was a 10% chance that it was bacterial, requiring immediate IV antibiotics just in case. Isaac’s veins were nearly impossible to see because of the constant medications to reduce his fever over the past 5 days. I held him tightly in my arms, fighting back tears, while he writhed as the nurses and doctors tried three different veins with no success. Finally, the PICU anesthesiologist got a line in his foot and the antibiotics were initiated. They told us to keep a careful eye on the size of his foot, in case the vein burst. An hour later the nurse checked and, despite our vigilance, came as close to panicking as we had yet seen –  the vein had burst and she had to stop the IV immediately. She urgently called all the doctors for a consultation, a moment that somehow seemed to mark a significant turn for the worse. My blood suddenly ran cold, and for the first time, I let the thought sneak in that there may be a chance the unthinkable happens.

The PICU doctors came to visit again. They thought the antibiotics had entered his system despite the botched IV, but were increasingly concerned about his breathing. They decided to move him down to the PICU where they could monitor him more closely and put a small CPAP mask on him to help him breathe more easily. Relief washed over me – in a couple days the antibiotics would work and he would recover, and in the meantime, he had extra attention and constant monitoring in case he needed help.

At midnight we rolled through the halls of the deserted hospital to the PICU. We were taken to a large room with just one other patient and greeted by a team of nurses and doctors – they assessed the situation and decided that action was urgent.  Isaac was quickly given another IV in his hand for sedatives to calm him while the doctors tried to put on the mask. Despite the sedatives, Isaac went ballistic when the mask was put over his nose, mustering all his energy to fight it. He looked at us with an expression that will haunt me for the rest of my life, eyes wide and protruding in pure terror as though we were trying to smother him. His heart rate spiked above 220. I legitimately thought they were going to kill him by inducing a heart attack. Chris fled to the waiting room while I stayed to try and calm him down, singing to him and holding his hands, fighting to keep my face from betraying the fear creeping over me that we might lose him right then. The doctors tried a different full face mask, hoping he would accept this one more easily. He did not. He was now in full acute respiratory distress (ARDS) and could no longer breathe on his own – the situation had become critical. The only option was to intubate immediately by inserting a breathing tube attached to a mechanical ventilator through his nose and into his lungs – also known as putting him on life support. He would be in a medically induced coma while he was intubated, and there was no way to know how long it would take for him to recover.

Chris and I huddled together on the couch in the family room down the hall, wide awake despite the 5am hour, waiting for a doctor to come and get us when it was over. Only, when the doctor came she informed us that the tube was successfully inserted, but he would also need a central line sewn into a vein in his neck to handle the burden of medications now required to reduce the pain and consequent agitation of the tube, and this would take another hour. He would also need a catheter, since he couldn’t control his bladder in this condition. Neither of these additional procedures had been mentioned before or crossed our minds, and it slowly began to dawn on us just how quickly interventions cascade, weaving a tangled web that requires incredible experience and delicate management to avoid causing more harm than good.

When we returned to the room, Isaac was fully sedated but breathing normally now that he was on a ventilator. Despite the jarring appearance of so many tubes sticking out of him, he looked more peaceful than he had in days. Unfortunately, this peaceful facade was interrupted every 5-10 minutes as the secretions from the tube and the virus built up in his chest, blocking the tube and therefore the oxygen he now fully depended on to breathe, causing his vitals to crash which set off three separate monitoring system alarms in a cacophony of alerts and beeps. Each time this happened the nurses would rush over, dress, and disconnect the machine, causing him to momentarily stop breathing while they stuck a vacuum down the tube to aspirate the phlegm. He would thrash and flail, convulsing as he went into a silent coughing fit, his face contorted in pain and discomfort. His heart rate would then spike as he tried to recover, setting off yet another round of alarms. Each time, we held his hands, sang to him, kissed him…one of us stayed by his side 24/7 to comfort him during these moments, dying to hold him again, trying to hold ourselves together, my heart permanently on the verge of breaking. I was totally consumed by this process, staring all day at the numbers on the screen, waiting for them to improve enough that he could be taken off the machine. They didn’t.

I couldn’t sleep. I couldn’t eat much. It felt as though time and the whole world had stopped and we were living inside a small bubble in this hospital. My hands were dry and cracked from continuous washing and hand sanitizer each time I came or went or touched anything. Chris and I were both sick with the virus Isaac had initially come down with. We lived for the twice daily rounds, when a crowd of doctors would come and analyze his condition and then explain his prognosis to us in English and answer our questions, hoping for some positive news.

On day three in the PICU, a week after being admitted, the doctors asked me to go home and get some sleep and let Chris stay with Isaac. I couldn’t imagine spending a night alone, especially in our home, but I was so exhausted that I didn’t put up a fight. With a little distance, I realized that I was increasingly preparing myself to brace for the circumstance that we might walk away from the hospital without Isaac – it was a level of sadness I’d never felt, in fact had no idea was even possible, before. Every time I watched a video, looked at a picture, or thought of a song to sing him, I would break down inconsolably. We were just starting to really get to know him. The eight months we’d had so far had been the happiest of my life, and they were nowhere near enough. Never again would I complain about a sleepless night or a dirty diaper, or take a single moment of my time with him for granted.

On day five in the PICU Isaac still had a fever, he now had bilateral pneumonia, and there was fluid building around his lungs. The doctors were growing increasingly concerned; he should not have a fever if the antibiotics were working. Furthermore, the longer he remained on the ventilator, the more adverse reactions occurred. A toxin was building in his kidneys from the morphine that required an additional medication. His body was swelling from edema caused by the medications, which required two diuretics. He needed a daily enema and laxative followed by a tube occasionally inserted into the rectum because he couldn’t let out gas or poop. The nurses had to gently sponge his entire body and rotate his position twice a day to prevent bed sores and rashes. Despite constant, meticulous care, he got a full body rash anyway in reaction to the medications, a bulging sore on the back of his head, and a blister from the catheter.

Finally, the lab results came back: in addition to now testing positive for the RSV virus, he had a rare case of double bacterial pneumonia, and while the antibiotics had treated one of them, the real threat was MRSA, resistant to first line antibiotics. The word MRSA strikes fear into the heart of any American and we felt ours sink the second we read the infamous acronym. The doctors were quick to reassure us that they could treat it, and that in a couple days we should see an improvement as the antibiotics kicked in. In hindsight, after allowing myself to research the condition and odds of survival, it was impossible for them to be that certain, but they projected total confidence so that we would be confident in Isaac. We needed it, and I am still very grateful for it.

The new antibiotic was Vancomycin, a heavy hitter. Two more days of counting numbers, holding our breath for any change, and this time they steadily improved. Then, after a week on the ventilator, it was time to extubate. It wasn’t an ideal situation, the numbers weren’t as good as they needed to be, but the tube was starting to cause more harm than good as his body slowly started rejecting it, and it was becoming riskier by the day to leave it in. That morning, our nurse had left his station by Isaac’s bed, and while he was away the secretions started to build up.  Isaac began coughing, struggling to breathe, but nobody was coming. His oxygen level decreased, eventually dipping dangerously as his vitals crashed, alarms sounding. I flagged down a doctor. She wandered over, assuming I was overreacting since the nurse hadn’t come, then took one look and flew into action, calling for help. Isaac was giving me another desperate look I’ll never forget, eyes wide with fear, pleading, as if to say “i’m drowning, and you’re not saving me”. It took everything I had to stay strong for him and not melt to the floor in tears.  This happened three times in a row. I couldn’t take any more and broke down as the doctors decided they couldn’t remove the tube in this state. But a senior doctor decided they must, or it would only get worse. Chris was braver than I and stayed with Isaac. I left the room, visibly shaking with anxiety but grateful Chris was there, expecting to hear about the trauma after the fact. But miraculously, it went smoothly. When I reentered the room 15 minutes later, Isaac was sitting up, looking shocked and very ill, but breathing on his own. I took him in my arms, completely overwhelmed by relief and joy, knowing that he would now get through this.

But the journey wasn’t over yet. Once the tube was out and he was no longer sedated, it was clear how much pain and discomfort he was in. His voice was hoarse and his cries came out as a heartbreaking whimper, barely audible, but his face told us everything – he was in agony. For two days my heart continued to break as he struggled while the doctors analyzed whether he could pull through the transition without additional medications, a measure they were hoping to avoid. It was hard to remember that this was a better situation than before – seeing him like this was almost unbearable, causing a visceral reaction in my chest every time he winced or whimpered. Reluctantly, they concluded that he was going through withdrawal from the opioids and needed to be treated, just as any adult would be treated for an opioid addition. They started him on methadone, clonidine, and lorazipam. There is no set regimen for babies, so it’s a matter of trial and error to get the dosing right. The doctors predicted it would take two more weeks to wean him, during which we would primarily be in the ICU due to the potential severe side effects.

The dose was high on day one, and so was Isaac, staring into space, eyes glazed over, in his own world with no recognition of us. Day two was better, and on day three he finally smiled, the first indication that the old Isaac was still in there; our hearts soared. The next day he giggled, trying to steal my glasses, and the following day he seemed almost himself again except for an awful stridor in his throat. But after successful rounds of steroids and breathing treatments the noise disappeared and we soon started to feel awkward. Isaac was still on many powerful drugs, requiring close monitoring by the nurses, but he was back to his happy, giggly, social self, trying to play peek-a-boo through his crib with the other parents and medical staff, and get a laugh out of everyone he made eye contact with. On one hand, it was probably a welcome sight to see a recovered patient, but in contrast to the other patients and their sad, weary families, we were self conscious about our joy at seeing Isaac acting like himself. The staff agreed, quickly removed the central line from his neck, and relocated us to the regular ward a week early. Here, we ran into the doctor who originally sent him to the PICU. She was ecstatic that he was healing, explaining that all the doctors had been following his case, and had even given a presentation on him, as they had never seen anything like it before.

Finally, a month after Isaac was first admitted, the wires and tubes were all removed, the medications all stopped. Now it was merely a matter of a 24-hour observation period to make sure he remained stable and comfortable, and then the nightmare would officially be over and we could all go sleep together in our own home, just in time for the holidays. Sure enough, the next day the doctors signed the exit paperwork and we were free to return to normal life.

The day after our release, just days before the first cluster of COVID-19 cases in Wuhan China was made public, we had a control appointment with our pediatrician. He advised us to keep Isaac away from the world for a while, warning that this would be a very bad year for viruses. Little did we know how right he was.