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Grace: A mosquito bite, a year of hell — 'It's better now,' but despair won't let go

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Beth Burton was fine. Her husband, Don, was fine.

Their lives in an upper-middle-class suburb of Omaha were hectic with four children, including a new baby, and Beth’s demanding job as an anesthesiologist. But it was all fine. Better than fine, really. Four healthy children. A dream house. A dream life.

Then one October day, nothing was fine. It was, as Beth later would say, a living hell.

The Burtons’ lives changed in an instant, when a mosquito bite became a fever that became so much more, and a catastrophic illness no one saw coming turned all that was fine upside-down.

Nothing was fine, and there is no guarantee it ever will be.

What then?

* * *

People get sick. People die. Accidents happen.

This is a fact of life, and though it occurs all around us, it does not become real until the tragic event lands on our own doorsteps, strikes our very homes.

Beth is a doctor. She knows bad things happen from her training and from her work at the Nebraska Medical Center and from being a human. She also knows that you can’t predict some things in life — like a disease-carrying mosquito biting your husband, giving him one of the worst forms of West Nile virus there is.

But Beth, like most people, did not walk around contemplating every piano that could fall from the sky, every manhole that could open beneath her feet. As a 39-year-old mother married to a relatively healthy, strong 48-year-old, she took the fact they were fine for granted the way we all tend to do because things generally are.

Besides, Beth was too busy last fall with the four little ones to think much beyond the next meal, the next nap and the next plate in her juggling act as her pending return to work loomed.

So when Don got a cold in late September, she had him sleep in the guest room to keep him away from baby Mason. And when Don got a fever, she had him take Tylenol and said to go to the doctor. And when Don slept all day, and the antibiotic the doctor prescribed didn’t seem to help and when he threw up all night, she said he’d better get to the hospital. Might need some fluids.

Don drove himself across town to the Nebraska Medical Center ER.

Then he sent a text: They’re admitting me.

* * *

Beth and Don have been married for 11 years.

They met in a salsa dance class as two Omaha transplants: Beth from Gothenburg, Nebraska; Don from northwest Missouri. They were both faithful Lutherans, attending service at Kountze Memorial downtown. They both wanted the same things: stability and family. And a life together. When Beth got assigned a residency program in Seattle, Don moved with her. A business intelligence analyst, Don could basically work from anywhere.

Then came a baby, their first daughter, Carson. The Burtons moved back to Omaha. Beth got a job at the medical center and Don worked flexible enough hours at Oriental Trading Co. that he ran things at home. Paid all the bills. Knew where the duct tape was. Knew all the computer passwords. Brushed Carson’s teeth, then Harlow’s teeth and then Rowan’s teeth as their family grew. He hung the family portraits perfectly in the new house in Sarpy County.

Beth was the family’s engine: its planner, decider, doer and worrier. Don was the family’s everything-else: its wheels, its seat belts, its windshield wipers when the rains fell.

* * *

As the summer of 2018 wound down, the Burton family prepared for a change in season.

Carson, then 7, and Harlow, then 5, went to school. Rowan, then 3, went to preschool. On Sept. 1, Mason was born. The first boy.

Mason was healthy. He was delightful. Beth and Don were happy and exhausted. They had a formal portrait taken. They planned Mason’s baptism.

Within a month of Mason’s birth, Don felt more run-down than usual. Then he got flat-out sick. Then, on Oct. 2, he went to the hospital. All kinds of tests came back negative, but Don grew sicker. He forgot simple words. His fever spiked to 104.6 degrees. He slept all the time. He shook. He fell unconscious. He had to be put on a ventilator to breathe.

On Oct. 7 came an answer: West Nile.

* * *

West Nile is a mosquito-borne virus that first appeared in Africa in 1937 and in the United States in 1999. Last year, Nebraska had the second-highest number of West Nile deaths —12, behind Illinois’ 17. (So far this year, one Nebraskan has died of West Nile.) In 2018, the Nebraska Department of Health and Human Services reported 251 cases; among those were the highest rates ever reported in Douglas, Sarpy and Cass Counties.

At that time, Beth remembers her girls itching big, fat mosquito bites. But she doesn’t remember a bite on Don. Neither does he.

“Everybody asks, ‘Were you camping? Where’d you go?’ ” Beth said. “He was probably mowing the yard and playing with the kids.”

Most people bitten by an infected mosquito never know it and never get ill. Of the estimated 20% of infected people who develop West Nile fever, most experience nothing more than flu-like symptoms.

In just 1% of cases, the virus reaches the brain and the unfortunate victim develops meningitis or encephalitis. Or dies.

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Lindsey Rearigh, an infectious diseases fellow at the University of Nebraska Medical Center.

Those most at risk are the fragile: the elderly, the young and people like Don, whose immune systems are compromised because of cancer treatment, organ transplant or some other reason. Don has sarcoidosis, an auto-immune disorder that affected his kidneys. He was diagnosed in 2003. Over the next 15 years, he was on and off medication that basically suppressed his immune system. When he was bit last fall, he was taking the medication.

Beth believes that contributed to the virus hitting Don as hard as it did.

And the virus hit hard. Especially Don’s spinal cord. He lost most bodily function, including the abilities to walk, talk or hold anything in his hands.

There is no cure or treatment for West Nile.

In that hospital room, there was no timeline, no predictability, no way to know whether Don would live or die, get better or not.

“Hard to know,” said Dr. Lindsey Rearigh, an infectious diseases fellow at the University of Nebraska Medical Center. “Some people will recover in weeks or months. Some people never recover. It just depends.”

* * *

Sitting with Don day after day at the hospital, and later at Madonna, a rehabilitation hospital, in west Omaha, Beth felt like they had fallen into this giant abyss. There were no promises. There were no predictions. There was no firm ground beneath her feet. She could not count on him surviving or thriving. The unknown felt impossible. Throughout October, November, December and into January, Don was there but he wasn’t. He couldn’t really talk. He couldn’t really move. Weight fell off his 6-foot-2 frame. He lost more than 50 pounds.

Over the next few months, Don began to inch back toward her. He’d sometimes wiggle eyebrows or smile around his breathing tube or express himself through his eyes, letting Beth know he was there. She began to learn how to read his signals and understand him when he began to talk.

When this occurred, she was stunned to learn that Don had lost months of his life: He told her he doesn’t remember almost anything between October and January except for the Christmas Eve service at Madonna, when Rowan screamed.

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Don Burton, center, works with physical therapists Rachel Johnson, left, and Christy Neneman at QLI. Burton had been living at the rehabilitation facility, where he was working to get his speech and mobility back.

At some point in February, Don mumbled, stricken, to Beth that “a mosquito did this to me!” His realization told her he was back. He was aware.

Beth was relieved that Don was getting better. She was grateful for all the help. Her partners at the med center had taken some of her call shifts after she went back to work, post-maternity leave in December. Her Kountze church family had pitched in with meals. Don’s caregivers at the Nebraska Medical Center, Madonna Rehabilitation Hospitals and QLI were so loving and competent.

But it was all so overwhelming. Beth would work her doctor job and go home and face all that: Meals. Cleanup. Laundry. Feeding the baby with one hand while brushing a daughter’s teeth with the other. After kissing the girls goodnight, Beth couldn’t just fall into bed. It was computer time. She had to sort out the mounting bills.

Their income dropped with Don out of work. The rules around which insurer would pay for what services were complicated. She had to explain over and over in appeals documents that Don hadn’t suffered some kind of stroke without a timeline of recovery. His progression would be slow and unpredictable.

She needed as much time as she could get at Madonna, where Don was from November through February, and QLI, a residential treatment facility that specializes in treatment of traumatic brain injury and spinal cord injury. Don was receiving vital therapy there that appeared to be taking root, but at one point the insurance company wanted him to come home before Beth felt he was ready and before she felt she was ready. She was going to face $1,000-a-day charges but got it worked out just in time.

Beth had to swallow her pride and start a GoFundMe. She had to refinance their house. She had to apply for Medicaid.

She had to hire out help: Snow removal. The lawn. She hired an au pair from Germany who, upon her recent arrival, didn’t speak much English. She hired caregivers for Don who have been no-shows.

“You go through an agency. Nobody from the office will answer my phone calls,” she said. “You’re just on your own.”

* * *

And yet.

Don, now 49, is alive. Don, who left QLI on July 31, is back at home. Don is back in the sense that he understands everything; he has not lost cognitive function.

Don has gained strength. He can move his wheelchair around the house. His slow, halting speech is getting better. He can sip pop from Sonic with the kids. He can hold Beth on his lap and play board games.

What is it like to be Don Burton right now?

“Hard,” Beth answers, translating for Don. She said he’s frustrated that he can’t help her.

What keeps him going?

“Just the kids. And my wife.”

His recovery seems to be taking forever since he first fell ill 11 months ago. Take his hands.

“He’s getting some strength on his left side, in his left hand,” Beth said. “Some on his right. But the fingers don’t work as well in that hand. His wrist is starting to come back on that side.”

And his feet. Don recently was able to flex a foot.

“That was new,” Beth said.

Don cannot walk on his own. He cannot use the bathroom normally.

He is getting outpatient rehabilitative services through Madonna. And Beth is hopeful that, despite the possibility that Don’s progress could stop at any time, he will continue to improve and regain his past mobility.

“I’m hopeful we’ll get back to maybe not complete recovery but maybe walking,” she said.

Still, Beth is tugged by the yo-yo of despair and hope. She’ll say things like: “It’s been a hard road,” and then immediately add: “But he works hard every day.” Or, the past year has been “hell.” But. “It’s better now.”

She tries to focus on the positive, on what they’ve gained, inch by slow inch. She tries to keep her role — as family engine — running. They all depend on her right now, and Beth is aware that they can’t afford for her to stop.

Plus, there’s another reason.

“If I don’t stop,” she said, “I don’t get sad.”

* * *

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From left: Carson Burton, 8; her dad, Don; her sisters, Rowan, 4, and Harlow, 6; and her mother, Beth, play a game called Hedbanz with Don during a visit home. Don had been living at QLI, a rehabilitation facility, where he was working to get his speech and mobility back.

Things are not fine for the Burtons. Far from fine.

But day by day, small victory by small victory, life is getting better. And this event, this bomb that exploded on their lives, is becoming more normal. They are dealing with it.

Beth and Don do not try to live too far into the future. They know that their success will depend, in part, on accepting what is in front of them right now.

This means that no matter what happens, they will get to fine.

They will be fine.

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Metro columnist

Columnist Erin Grace has covered a variety of beats since she started at The World-Herald in 1998 — from education to City Hall and from the city's western suburbs to its inner-city neighborhoods. Follow her on Twitter @ErinGraceOWH. Phone: 402-444-1136.

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