‘It was like the lights went out’: Southwest Ohio family of 6 dealing with COVID complications months later

Morgan Ott and her stepfather seemed to be the sickest, said her mother Katey Stinson. The family took multiple ER trips when Morgan had COVID-19.

The first inkling the family had that 14-year-old Ott wasn’t recovering normally was on one of those ER visits when the doctors found that she had “COVID crystal lung,” which feels like shortness of breath and looks like ground up glass in the lungs on a chest X-ray.

About two weeks later, when Ott seemed to be feeling better, Stinson noticed Ott’s eye seemed scratched, then whites of her eyes turned completely red and Ott lost her vision.

“It was like the lights went out for her,” Stinson said.

Ott spent a few hours in the MRI machine at Dayton Children’s. Stinson said the hospital “ran every kind of test known to man,” but didn’t think these neurological issues were COVID-related.

“My mom gut kind of kicked in. I knew something wasn’t right,” Stinson said.

The family ended up taking Ott to the Cleveland Clinic, where doctors found several neurological issues. Ott had intercranial hypertension, or pressure on her optic nerve. She also has sixth cranial nerve palsy, or weakness of the nerve that holds the eye in place. Ott’s eye will sometimes turn in on itself because of this. Ott also has seventh cranial nerve palsy, or weakness of face muscles that has caused her smile to shift crooked.

“Without a doubt, they’re saying all of this came from the COVID,” Stinson said.

More than four months later, her symptoms from the coronavirus still exist.

A recent study done at Northwestern Memorial Hospital of 100 patients from 21 states with long-term symptoms who did not have immediate harsh reactions to the virus found that 85 percent of them experienced four or more neurological issues like brain fog, headaches, tingling, muscle pain and dizziness.

Dr. Roberto Colon, Chief Medical Officer at Miami Valley Hospital said one of the misconceptions about COVID-19 long haulers is that if someone has mild symptoms when they get sick, they’re not going to have these long-lasting effects.

“Unfortunately there does not seem to be a great amount of correlation between how ill you were and the rate at which we get the long COVID symptoms,” Colon said.

Colon said there are two different categories of COVID-19 long haulers. The first is people who get COVID-19 and are very sick, they have symptoms like shortness of breath or fatigue until their bodies heal. Basically, they get so sick it takes their body a long time to get better.

The second category, which Colon called “more nebulous,” is when a person has a more mild case of COVID-19, but for the next several months have symptoms that seem to never go away, like fatigue, loss of taste and smell or muscle aches.

Colon said these COVID-19 long haul symptoms may have nothing to do with how they felt when they were sick with COVID-19, but it seems to hang around for a while after.

“We’re still trying to piece together what causes all of (the COVID long haul symptoms) and how we get rid of them,” Colon said. “We are trying to figure out the ‘why’ so we can figure out how to treat it well.”

Colon said long hauler symptoms are most noticeable in young, healthy people, because they previously didn’t have these health conditions, but COVID-19 do not discriminate. The symptoms seem to linger for a wide array of people. About 30% of people with COVID-19 may have some long hauler symptoms that go on past four weeks, Colon said.

“There are people who have yet to recover a year in,” Colon said.

There is a lot of variability in long hauler symptoms and treatment varies based on those symptoms, Colon said.

“It’s been very frustrating that we don’t have a cure-all for (COVID long haulers,” Colon said.

The most common long hauler symptoms Colon said he has seen are fatigue, muscle aches, shortness of breath, head aches, loss of smell and taste or abnormal smell.

“We won’t know the extent of these long hauler complications until much later, we know COVID is inflammatory, what we don’t yet know is if you had COVID in past year, how long will that risk for inflammation hang around?” Colon said.

Colon said some cases of long haul symptoms could cause an extra risk for strokes or could cause heart disease at a higher rate than just based on age.

“We won’t know that information for a long time. There will be pieces of that extra risk we’re not going to know for quite a while,” Colon said. “We are just starting to understand this syndrome.”

Ott goes to Cleveland Clinic every other week now. Stinson said seizures have also set in, unrelated to COVID. Stinson hopes that the next time Ott goes to Cleveland, doctors will tell them that Ott’s eye has stabilized enough to have surgery to fix the muscle, which would help her eye sight.

“She’s a fighter,” Stinson said. “Every single time she’s at the hospital, she tells them she’s like the Terminator, that she’ll come back. Her spirit is that of gold, no matter what happens to her she smiles.”

Katey Stinson and Ott’s stepfather, Kevin Stinson, said her life has been altered because of this. She won’t be able to get her driver’s license when everyone else does. She had to miss out of the cheerleading season. She’s not able to go to school for a full day right now.

“I wish I could trade spots with her,” Stinson said. “She’s 14-years-old. That’s not the way it is supposed to be. When this first came out, this wasn’t a kid’s disease. “It’s beyond heartbreaking to see your healthy child’s life get to the point where she’s only able to attend school on half days on days when she’s not feeling too tired or hurting.”

The Stinsons said the Oakwood community and their church, Ginghamsburg Church, have been supportive throughout this whole ordeal. Some neighbors started a “meal train,” bringing the family meals every day for a few weeks this winter. Ott’s grandparents have also helped tutor her when she can’t be in school and helped babysit the other children, Annabelle, Coleman and Lydia, when Kevin and Katey Stinson need to take Ott to the hospital.

Ott said her grandfather has been her best friend throughout her sickness, helping her with her math homework.

“We’re trying to figure out what the future looks like,” said Kevin Stinson. “It’s a lot different than what we thought before.”

Ott, a freshman at Oakwood High School, said she feels that what’s happening to her isn’t fair at all.

“Just wear your mask,” Ott said. “I don’t want to be handicapped. I don’t want to do this for the rest of my life.”

Katey Stinson said that just because someone’s two weeks of feeling sick with the virus are over, that doesn’t mean they are out of the woods. People should monitor themselves after they seem to recover from COVID-19.

“We didn’t think it would happen to us,” Katey Stinson said.

Colon said some people who have been COVID-19 long haulers who get a vaccine see their symptoms go away.

“We are encouraging people to get vaccinated,” Colon said. “There is a small chance it can improve symptoms, but know it doesn’t worsen symptoms and it can protect you in the future.”

Colon said if area residents have questions about treatment for COVID-19 long haul symptoms, they should talk to their health care provider about what the best option for treatment may be.

Ott said she hopes people don’t see her as different. Seeing her tossing a lacrosse ball in her front lawn, outsiders wouldn’t know the struggle the teenager is going through.

Ott and her family are just happy to have some answers and are ready to face her health problems head on.

“It’s not whether your glass is half empty or half full,” Katey Stinson said. “We’re just happy to have the glass.”