A family's desperate search for COVID care for disabled son

Malik Lewis is battling pneumonia and COVID — and the tubes and wires keeping him alive.

Malik, 21, has a sweet smile, a loving family, and developmental disabilities that leave him largely nonverbal and completely unable to understand why he keeps waking up, confused and in pain, in the COVID ward at St. John's Hospital in Maplewood.

Again and again, he has pulled out his breathing tube, ripped away the oxygen cannula and tried to escape the unfamiliar hospital room. Malik is very strong and when he acts out, he can be aggressive.

"When he's being weaned off sedation he freaks out and his anxiety is snowballing," Malik's mother, LaToya Lewis, wrote in a recent Facebook update, adding that at one point, it took seven people to hold Malik down and stop him from extubating himself.

It is a vicious circle. Every time he recovers enough to be weaned off the ventilator, he panics and has to be restrained and heavily sedated, and ends up back on the ventilator. Desperate, his family is reaching out now in search of anyone who can suggest a treatment or clinic that can accommodate a COVID patient with special needs.

"At this point I'm in need of working on solutions to keep Malik calm once he's weaned off the sedation and during the extubation process," LaToya Lewis said in a recent e-mail exchange. "The question is, how can we support a developmentally delayed strong young man who can't understand what is going on, so that he can fully and safely recover on the ventilator?!"

But Malik's family and friends haven't given up hope of help for this young man who loves SpongeBob, his two little sisters, and the music of Missy Elliott. "He's lovely. He's absolutely wonderful. We miss him like crazy," said Melissa Knight Lenzmeier, one of Malik's teachers at Focus Beyond, a transition program in St. Paul for young adults with severe disabilities.

"His smile is like no other. His joy and level of compassion is remarkable," Lenzmeier wrote in an e-mail after the interview. "There has to be a place in our great state of Minnesota and our amazing healthcare system for him to receive the appropriate care to both account for health, his abilities, and his disabilities."

There are no bad guys in this story. Malik's family wants him home and healthy. So do the compassionate, exhausted doctors and nurses who are grinding through the nineteenth month of a global pandemic that has caused 40,000 hospitalizations and almost 8,500 deaths in Minnesota alone.

"These are compassionate, resourceful, really smart people," said Ellie Wilson, executive director of the Autism Society of Minnesota (AuSM), which offers training to hospital and clinic staff about how to make a medical emergency less stressful for patients who may need more time, more explanations, more space, or simply more patience. "They just happen to have gaps in their training."

M Health Fairview, which runs St. John's, could not comment on Malik's case. The Autism Society has worked with institutions ranging from zoos to museums to sports stadiums to help them accommodate patrons with special needs.

Over the summer, AuSM partnered with Hennepin Healthcare to offer a sensory-friendly COVID vaccination clinic. Malik, who is so terrified of needles hospital staff had to sedate him in the emergency room, had not yet been vaccinated against COVID.