As Justin Lee Francis was weaning off sedatives after 10 days in intensive care, the 3-year-old gazed toward the ceiling over his hospital bed at Primary Children’s Hospital and began talking about monsters.
“He was hallucinating,“ said Yvonne Francis, Justin’s mother. “The only clear thing he said to me that day is: There were monsters that were clawing and were going to make him fall out of his bed.”
Fortunately, Francis said, Justin Lee is recovering and is unlikely to remember the monsters, or the week he spent on a ventilator after he was diagnosed with COVID-19, rhinovirus, adenovirus, pneumonia, asthma, and other complications.
But Justin Lee’s mother has missed a lot of that recovery. Last week Francis herself began to feel tired and sick. She was eight months pregnant and had spent weeks darting between bedside vigils at Primary Children’s and caring for Justin Lee’s little brother at the family’s Salt Lake City home. It was reasonable she’d be tired, she thought.
As she cared for Justin Lee in the hospital, the symptoms snuck up on her: swollen hands and feet, extreme fatigue, shortness of breath. When Francis checked into the nearby University of Utah hospital, her blood pressure had soared to more than 160/120.
She was diagnosed with pre-eclampsia and underwent an emergency cesarean section delivery. Her son, Teagan, was born five weeks premature. She and her husband didn’t get to hold him before he was rushed to the NICU.
Now three of the five members of her family have been hospitalized. Francis is recovering well but couldn’t visit Justin Lee for a week. Teagan is expected to remain hospitalized for at least another week or two while he puts on weight and learns to swallow.
And Justin Lee finally got to go home Thursday night, after 22 days in the hospital.
Justin Lee appeared in a Salt Lake Tribune story while he was intubated and sedated in the ICU about two weeks ago, as COVID-19 hospitalizations of children were rising sharply. And pediatric hospitalizations have remained high; as of Friday, more than 100 Utah children younger than 15 had been hospitalized with COVID-19 in the past two weeks.
As the highly contagious omicron variant of the coronavirus swept through Utah, hospitalizations soared. But the variant also is less likely to cause serious illness, raising questions as to whether a significant share of those COVID-19 hospitalizations were “incidental’ — that is, patients who tested positive for COVID-19 after being admitted for an unrelated malady.
Doctors say that distinction frequently is impossible to tease out because so many patients display symptoms linked to both the coronavirus and to another illness they may have — and especially because COVID-19 and other conditions frequently exacerbate each other.
Dr. Andrew Pavia, a specialist in pediatric infectious diseases at Primary Children’s, has said truly incidental coronavirus cases have been “uncommon” at the hospital. More often, he said, children who test positive for COVID-19 alongside other diagnoses appear to be made worse by all of them.
That was the case for Justin Lee, Francis said. Francis took him to a Taylorsville hospital on Jan. 13 when he was struggling to breathe after he choked on a piece of apple. In about 12 hours, Francis said, his symptoms deteriorated from a runny nose to a “horrible” cough and fever. His lungs were so full of secretions, she said, that doctors who performed a bronchoscopy couldn’t see whether the apple was there or not.
He was diagnosed with asthma and pneumonia and, despite testing negative when he arrived at the hospital, soon tested positive for COVID-19 and two other viruses that cause respiratory illness. He spent ten days in the ICU, about a week of it on a ventilator before transitioning to a breathing mask that covered his face for a few more days, Francis said.
As Justin Lee gradually was taken off sedatives, he was not himself, Francis said, first hallucinating monsters and later showing a changed personality. He appeared to be confused, even delirious, Francis said — something doctors have observed in many ICU patients and may be linked to drugs, sleep disruption and prolonged immobility.
As days ticked by, he remained changed, Francis said; he suddenly had become far more affectionate with his toys and the once-shy boy no longer seemed to have the energy for boundaries. It was a relief, she said, when he finally told nurses he didn’t want them to administer a breathing treatment.
“I feel like he has regressed quite a bit. I do not see my 3-year-old in his actions. A lot of his personality is gone right now,” Francis said a day before Justin Lee was discharged. “I’m hoping as he keeps showing improvement in all of these areas, a lot of that personality will come back. It’s something that could take a few more weeks as he regains a lot of his muscle strength and ability to actually play.”
Justin Lee will have to continue physical, occupational and speech therapy for weeks, and possibly months, Francis said.
“They’ve been helping him stand up, helping him finger paint, helping regain all of those skills he had before,” Francis said. “It’s been so nice to see him start to get active again. It really is almost like my 3-year-old has to learn to do all of these movements again.”
Justin Lee even has had to re-learn to swallow, Francis said, just as his newborn brother learns it for the first time.
Francis said her family has received an outpouring of love and support from strangers as Justin Lee’s story circulated online. The family has received hundreds of donations, which Francis says she hopes will cover out-of-pocket costs for Justin Lee’s hospital care, and now new hospital bills for herself and Teagan.
But she also has found herself in the cross-hairs of COVID-19 denialism. She’s gotten multiple angry messages a day, she said, since she called on Utahns to get vaccinated and wear masks to prevent spreading the coronavirus to patients with medical risks and children who, like all three of her sons, are too young to get vaccinated. One called her a “stupid f---ing a--.” Another called on her to be fired from her job.
She said strangers also have sifted through her social media posts from long ago; one man was furious about a 2020 Facebook post in which Francis reflected on white privilege after police in Minnesota murdered George Floyd.
“People are really upset,” Francis said. “I’ve had multiple people accuse me of trying to play off people’s emotions, that he’s just a piece of ‘vaccine propaganda,’ what a horrible mom I am to be using my kid to push this narrative.”
But it’s a narrative she is undaunted in pushing.
“Just because you make the argument that this variant is more mild, that doesn’t mean it’s a mild sickness,” she said. “You’re more likely to have to go to the ER for support if you’re unvaccinated, and that can expose other people. My son tested negative when he came to the ER because he aspirated on an apple. Someone else could be going for a stroke. Most people who are vaccinated — if they get COVID, they aren’t the ones who are in the emergency rooms.”
Meanwhile, she said, she is looking forward to Teagan coming home and finally meeting his siblings Quintin and Justin Lee, now that the oldest brother is out of the hospital.
“We have been extremely happy to have him home,” Francis said.