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By: Mari Dias
*All names and identifying factors have been changed to protect the innocent or guilty in this story. (excluding Hasbro Children’s Hospital)
“I prayed to God today,
A sudden, selfish choice.
I kneeled down to pray today
He didn’t recognize my voice.” (Lyrics by Dean Petrella of The Complaints)
Nurses Knows Best
My clients frequently report that this quarantine has allowed for far too much time alone to think without distraction. One client described it as “a scrying mirror for the mind’s demons to resurrect.” This is what happened with Marjorie. She heard the reports of children dying in New York with atypical Covid-19 symptoms that mimicked Kawasaki disease. It was the word “Kawasaki” that triggered a traumatic memory, which she shares below.
“I wish I could disremember this, Dr. D., I tried, but I can’t seem to erase the fear. Can you help me? These are my memories. (deep inhale and sigh). Austin was a healthy, active, and bright 12-year-old boy. It was January, the height of the flu season that year. I remember like it was this morning. I know because I was there. I am his mom.
Austin came home from school on a Thursday, saying that he didn’t feel well and collapsed on his bed face first, still in his winter coat and burdensome backpack. I let him sleep for a while. When I went back to check on him, his forehead burned my hand. I woke him, gave him Tylenol, and continued to wake him throughout the night, alternating Tylenol, and Motrin in what I would soon realize was a desperate, and ultimately failed attempt.
The following morning, a Friday, he still had a fever of 102, and refused to eat or drink anything. He wanted more sleep. I called my neighbor, a PCP and described the situation”.
“Oh, he just has the flu. All five of my kids are just getting over it. Just keep him hydrated, maintain the medication regimen for the fever and he’ll be fine,” he responded.
“I pleaded with him. Steve, I would feel better if you just ran over to check on him. He’s never sick.”
“No need Marjorie, it’s just the flu.”
“I felt uneasy. Something didn’t feel quite right, but I couldn’t put my proverbial finger on it. I decided to take Austin to the local walk-in treatment center. His stubborn fever remained at 102, and he appeared pale and weak. He leaned on me as we walked to the car, and then again when we arrived at the treatment center.
We met Dr. Forester, who after a full examination, seemed to agree with my neighbor, Steve.
“It appears to be a just a bad case of the flu. But let’s do some blood work just in case.”
“Just in case of what?” I thought.
We returned home, Austin to another night of a medication regimen and I, slipping the thermometer through his parched, cracked lips as he slept. Any attempt to hydrate him proved futile, as he vomited after one swallow.
My unease segued to an easy panic: a second sleepless night for me sitting in the darkness, waiting for daylight, and praying for a reprieve from his fever. No luck. The phone rang on Saturday’s sunrise – an ominous sign. It was Dr. Forester.
“Good Morning, Marjorie. I just received Austin’s blood work results, which cause me some concern. How is his fever?”
“Still 102. It hasn’t changed since Thursday night.”
“Well, my concern is this: his blood bands are very high. This means that he has a serious bacterial infection,5 or a virus, probably the flu. You see, when our body is attacked by a virus our white blood cell counts increase, preparing to fight off the virus. When the white blood cells aren’t strong enough, or there isn’t enough of them to fight, the body sends a signal to the bone marrow to release more white blood cells. Sending in more troops, so to speak. I suggest you call his pediatrician or take him to a hospital emergency room. At the minimum he is sure to need intravenous fluid as you can tell he is getting extremely dehydrated.”
“I left. My panic became uneasy. I weaved in and out of traffic, well over the speed limit and returned home. I called the pediatrician only to hear a recording:
“To all our patients, if you missed the notice in your local newspaper, Dr. B has retired. All medical records can be retrieved by writing to the following address….”
My uneasy panic blossomed to a full- blown adrenaline rush. I called my neighbor. Remember him? Steve the PCP? I explained the details of what had occurred since we last spoke. I told him about the blood bands. This time I begged.
“Please come and examine him! His pediatrician retired. I have few options and he’s not getting any better!” I was frantic and determined.
“No need. It’s just the flu. If it makes you feel better, take him to the hospital emergency room. But don’t take him to Hasbro Children’s Hospital – you’ll be in the waiting room for hours. Take him to a local hospital.”
So, I did. By the time we reached a very quiet, unpopulated local hospital emergency room, Austin had to be carried. He was so weak. The “bone marrow troops” didn’t seem adequate. Fortunately, we were greeted by a gregarious, loquacious, young doctor – short, stocky, and extremely confident. He immediately gave my son an IV rehydration, and after a short time Austin claimed that he felt “a little bit better”. He was “pinking up” a bit. The doctor assured us that it was the flu and now that he was hydrated, he would continue to feel better.
He assured me again, “If you have any continued concerns or questions, please don’t hesitate to come back.”
I sighed with a bit of relief and a subtle yet persistent, unrelenting “je ne sais quoi”. The relief dissipated immediately when the nurse who signed us out took one look at the chart and took me aside.
“Marjorie, I don’t mean to scare you, but your son is very sick. I worked in the PICU (Pediatric Intensive Care Unit) at Hasbro Children’s Hospital for 15 years. I don’t know what he has, but he is very ill. If he doesn’t show improvement by tomorrow, bring him right back here.”
That persistent, unrelenting feeling roared.
“But the doctor just said….”
She interrupted me.
“Listen to what I just said. Bring him back.”
This is what psychologists refer to as an avoidance-avoidance conflict. It was, I thought at the time, the worst night of my life. Austin’s fever still maintained at 102, and on Sunday morning, he woke with a strange new symptom. It looked as if he had dipped both his hands in red paint. Upon further inspection, I noticed that his eyelids and below his eyes were pink. As I tried to lift him out of the bed to get his coat on, the phone rang.
It was the nurse.
She sounded out of breath. “Marjorie, how is Austin this morning?”
I filled her in on the new symptoms.
“I am so sorry I wasn’t as emphatic yesterday as I had planned. You see, I had to say something, but I didn’t say enough. I couldn’t sleep last night, and I can’t look myself in the mirror. Your son is very, very ill. Please bring him back to the ER. I am here.”
When we arrived for the second time the same gregarious, loquacious, confident doctor was on call. Today he was a short, stocky, Machiavelli.
He shouted at me.
“What are you doing back her already?”
His booming, cocky voice did not intimidate me. I was on fire. I was a mother on the war path who trusted the nurse above all else. My intuition told me so.
“Well, you told me to come back if I had any additional concerns or questions,” I replied in a mocking imitation.
“I simply want you to rule some other conditions out.”
He became even more belligerent. He grabbed my son’s head and began to shake it vigorously.
“What, rule out meningitis? “as he continued to shout and shake Austin’s head. Then he took his fingers and held Austin’s eyes as wide as he was able.
“What, rule out hepatitis?” his voice now escalating.
With every mention of a new condition his anger escalated exponentially. He seemed to snarl when he finished.
“HE HAS THE FLU! WHAT PART DO YOU NOT UNDERSTAND?!”
“Might you admit him?”
“Might you refer him to Hasbro?”
“Call a rescue to take him there?”
I replied, calmly and confidently.
“Doctor, when we left last evening, the nurse told me he was very ill and to return if he seemed worse. He does. He has bright red hands and pink circles around his eyes.
He looked as if he was going to burst.
“A nurse! A NURSE!” Who? Which one?”
He proceeded to round up all the nurses and put them in an identification line-up. All that was missing were the numbers on a card. My nurse would have been #5.
He addressed #1.
“Was it YOU?”
He addressed #2.
“Was it you?”
He was pacing back and forth with his arms behind his back, bullying them like an inquisitor.
My #5 nurse took a step forward.
“I was the one.”
He grabbed her by her sleeve, pulled her aside as I heard his vehement shouting at her through the privacy curtain.
“WHO DO YOU THINK YOU ARE? GOING OVER MY HEAD! SHE IS JUST A HYSTERICAL MOTHER. HE HAS THE FLU. YOU WILL BE SORRY YOU EVERY SAID ANYTHING. I WILL REPORT YOU.!”
And with that he stomped off.
We prepared to leave, and as we walked out to the parking lot, I heard footsteps running behind us.
“I’m so sorry.” I could lose my job and my license, and I really can’t afford to as I am a single mother with a disabled son. But my conscience is berating me. Get yourself to Hasbro Children’s Hospital immediately.
Which we did.
“Our nurse” had called ahead with our information and we were met at the door where they scooped up my son out of my arms and rushed him to the back. IV rehydration and blood work were completed immediately, and they chose to admit him. The doctors and nurses were astounded that Austin presented with these grave symptoms and was discharged twice from another hospital. Finally. I felt safe. I was in the right place. I exhaled. They transferred him to a lovely, private room. I planned on spending another sleepless night as my son’s sentinel. I am a mother, a watchful warrior.
Shortly thereafter a nurse came in the room to check his vital signs. As she pumped up the blood pressure cuff and waited, she appeared confused.
“Oh my, this is not working. I will be right back with another.”
She scurried off and returned with a brand-new blood pressure gauge.
“Oh my, what are the chances of grabbing two faulty cuffs ?!” she exclaimed.
“I’ll be right back.”
She returned for a third time without success. She hadn’t completely left the room before an organized chaos ensued. A half dozen medical personnel arrived and addressed me in a calm, efficient tone.
“Marjorie, your son’s blood pressure is very low. So low it’s not registering. We are here to transfer him to the Pediatric Intensive Care Unit (PICU). We will come back in about 10 minutes to escort you there. Is there anyone you would like to call?”
“Well, my mom. But my parents are in Florida.”
“CALL THEM” they shouted over their shoulders as they hurriedly transferred my son to a waiting gurney.
I inhaled and held my breath.
I walked into his ICU room. There were so many monitors and tubes and IV poles – he looked so small among all the equipment, like an unwilling participant in a covert medical experiment. They were pumping him with fluids to increase his blood pressure, which was initially successful. But there are often unintentional consequences. The influx of fluids brought his blood pressure up and caused pulmonary edema. When they stopped the fluids, the edema decreased and so did his blood pressure.
The next few days? Weeks? They were like being on a merry-go-round, always missing the brass ring. The CDC doctors came in from Atlanta, dressed in PPEs. I was obliged to dress the same as I never left his room. Was it contagious? What was it? Pediatric specialists from around New England were called to consult. There was no diagnosis. Spinal tap. Not meningitis.
“Had we been traveling recently? “
Yes, to London and Paris over Thanksgiving.”
They ruled out Mad Cow, Encephalitis, and West Nile. While my son lay dying.
“Well, it could be atypical Kawasaki. Or atypical Adenovirus,” they all mused, as they tsked and stared at each other.
“Sorry. It’s a mystery. Might he be the host of a new novel virus?”
Austin’s spleen was enlarged. The next day his kidneys were failing but the spleen was fine. His heart showed an arrythmia and then it didn’t.
I just kept waiting to exhale. And prayed. I prayed like I have never prayed before. I bargained, cajoled, begged God. I kept up my ongoing one-way dialogue with him.
“God, is this a punishment? God, tell me what you want me to do. I’ll do anything. Just save my son.”
And God finally recognized my voice. It came in the form of gamma globulin. Austin began to show improvement. Slowly. Methodically.
He was allowed to go home. Finally. He wore a halter monitor to gauge his heart and kept up pediatric cardiology appointments for a few years. He went back to middle school for half days until he completely convalesced. Several months later, two young teens died with the same symptoms. Death certificates indicated the cause of death as the “flu”. Austin’s final diagnosis was atypical adenovirus. His case was written up in the medical journals.
I never heard back from my nurse, except for a card she sent upon his middle school graduation; however, I know she saved my son’s life. The PICU nurses informed me that if I had returned home rather than going to Hasbro, my son would have died in his own bed that evening. His blood pressure would have “bottomed out.”
Remember my neighbor, Steve? When he heard that Austin was in the PICU he was quoted as saying,
“Thank God I didn’t go over to the house when she asked. I may have been culpable.”
It has been rumored that the short, stocky Machiavellian doctor called the PICU in tears.
I sued him. He was put on probation for 6 months while attorneys investigated.
My son’s files indicated that he was: “Referred to Hasbro for further evaluation.”
The nurse lost her job, even after my lengthy disposition before the hospital board. I will never forget her name. I have conducted many online searches to no avail. She seems to have disappeared.
Perhaps she was a guardian angel….
Dr. Mari Dias is a nationally board-certified counselor, holds a Fellow in Thanatology and is certified in both grief counseling and complicated grief.
She is Professor of Clinical Mental Health, Master of Science program, Johnson & Wales University. Dias is the director of GracePointe Grief Center, in North Kingstown, RI. For more information, go to: http://gracepointegrief.com/