Getting home to Hadley: Young mother works to recover from sudden paralysis

May 10--Melanie Kyte remembers how it feels to work out at the gym, to hike in the mountains, to climb the bleachers in a baseball stadium.

She remembers what it's like to ride around town, windows down, ending a day of errands with music and a meal.

What it's like to fix her hair the way she wears it, with bangs over her forehead. To swipe on eyeliner and put on jewelry.

To give herself a shower, without help.

To hug her husband. To pick up her baby girl when she reaches, arms outstretched, for Mommy.

Lying in her bed at Patricia Neal Rehabilitation Center, Melanie Kyte remembers all of these things.

She can't wait to do them all again.

There wasn't anything unusual about the morning of Jan. 29. Melanie Kyte, 29, got up and took care of her 14-month-old daughter, Hadley, before heading to a Knoxville gym to work out. She'd lost most of her baby weight and wanted to tone up before shorts weather.

After her workout, she took Pellissippi Parkway back to the Blount County home she and husband Justin rented, a house they were thrilled to find a few months before -- it had a yard, for Hadley, and an extra room for a playroom.

She showered and headed to her job as a barista at Starbucks on Alcoa Highway. She'd been working there a little more than six months and liked her co-workers, her regular customers and -- most of all -- the coffee.

And that was when she noticed her leg was dragging.

"I couldn't use it like normal," Melanie said. "I just assumed I'd pulled a muscle in my calf."

Her employer offered to let her go home. She did, and laid down for a nap. When she awoke, "I couldn't move my leg at all."

Justin drove her to Parkwest Medical Center, but "they came to the conclusion there wasn't really anything wrong with me," Melanie said. They told her to go home, take ibuprofen, and get some sleep.

When she woke with a start at 2 a.m., she was terrified: She was completely paralyzed from her shoulders down.

She panicked. Justin called an ambulance, which took her to Blount Memorial Hospital. There, something neither of them had ever heard of -- Guillain-Barré syndrome -- was the neurologist's best guess for what was causing the paralysis rapidly climbing her body. The next morning, she was taken to neurologist Dr. Darrell Thomas at Fort Sanders Regional Medical Center for testing and a definitive diagnosis.

When Melanie got to Blount Memorial, the Guillain-Barré, which usually starts low on the body and ascends, hadn't made it to her head yet; she could still talk, eat and breathe normally. But by the time she got to Fort Sanders, she was nearly unintelligible, reduced to gasping shallow breaths and being fed through a tube.

Just months before, Melanie had been in Fort Sanders Regional for one of the happiest days of her life, the birth of her daughter, Hadley. A welcome surprise, Hadley arrived five weeks early, small but healthy, and instantly held both her parents in thrall.

Though she'd never really liked children, Melanie fell absolutely in love with her baby -- and suddenly felt a powerful bond to her own mother, who died of cancer when Melanie was 22.

"I can see why my mom was the way that she was, because she went without so that I could have things," Melanie said. "I'd give up everything (for Hadley). I never thought I could be that way."

Now, the place where she first met her precious daughter became the site of some of her darkest days. For three weeks, days of treatment and grueling therapy, with frequent visits from family and friends, gave way to long, restless nights, her sleep broken by nightmares and hallucinations. But being awake was no better, as she lay trapped with her thoughts.

"All I could think about was, 'I can't live my life in a wheelchair, I can't do this,'" Melanie said. "I'm one of those people, I don't want to be taken care of. And I knew if I stayed like this, I would have to be taken care of, and that's something I didn't want for my husband or my daughter. That was my biggest fear, that I wouldn't get better."

After all, she and Justin are still newlyweds. They'd met through an online dating site, neither expecting anything serious at first.

They shared similar interests, similar outlooks. Both emotionally scarred from past mistakes and losses, they were ready for a fresh start. By the time news of Hadley came along, they'd been together more than a year. Last May, they made it official with an informal oceanside wedding on a vacation to Folly Beach with Justin's family.

"They say you should date somebody who's your exact opposite, but it's worked out so well because we're so much alike," Melanie said. "We understand each other."

So she never worried that Justin wouldn't be there at her bedside. But she worried about the toll on him, the emotional strain of her illness, the burden -- logistic and financial. Neither her job nor Justin's, as assistant manager of a liquor store, provides health insurance.

"I worry about (the hospital bills) every day," Melanie said. "I just worry about that looming over me for the rest of my life."

With Guillain-Barré syndrome, the immune system attacks the protective myelin coating around the nerves, causing pain and muscle weakness or paralysis. It's estimated to affect up to four of every 100,000 people worldwide.

Thomas sees several cases a year, most of them mild. Some of them don't even require hospitalization; they're weak but get better with time.

It's only about every other year that he sees a case as severe as Melanie's. Even so, she's young and has never had any health problems; he has every reason to hope for a full recovery.

Time is the only cure for GBS: the body takes however long it takes to regrow the myelin sheath around the nerves. Treatment is mostly therapy to help the patient regain what movement weeks or months of paralysis steals, along with IV infusion of a blood product, which Melanie received during her first days at Fort Sanders. But that infusion only shortens the time GBS is active; it doesn't necessarily improve outcomes. And it's too early to say what Melanie's outcomes will be.

FEBRUARY

The first month is high highs and low lows. Melanie deals with nerve pain and sores where her skin breaks down from being in bed. The feeding tube in her nose is replaced with a more permanent one in her stomach, which depresses her. Talk of going from the hospital to a nursing home devastates her.

Friends and family visit, but because of the facial paralysis, she has difficulty communicating, which frustrates her. Some days she doesn't want to see anyone -- even her 83-year-old Mammaw, who helped raise her and visits every Thursday from Sevierville. Even Justin.

Then, one day, she can move her pinky. She does it again, and again, to be sure. Another day, she barely, barely wiggles her toes.

Former Ms. Tennessee Angela Conner, a GBS survivor, visits.

"I saw her walking and talking and being normal, and that gave me all kinds of hope," Melanie said.

Friends set up a trust fund so Melanie's supporters could donate money to help the family with expenses. Justin's hobby is racing remote-controlled cars -- custom-built, exquisitely detailed vehicles, not toys -- and his hobby club passes the hat at a race and collects several hundred dollars. A stranger leaves diapers and wipes for Hadley on the couple's doorstep.

Melanie qualifies for a scholarship to Patricia Neal Rehabilitation Center, a rare one, funded by donations and an annual golf tournament. But a nurse tells her that she has to sit up, strapped in the transfer chair, for a couple of hours at a time, "to show that I had the will to get better," Melanie said.

On Feb. 20, Melanie transfers to Patricia Neal Rehab.

"Now the hard work begins, but she can do it!" Cindy Kyte, Justin's mother, writes on the Prayers for Melanie Facebook page.

MARCH

At Patricia Neal, Melanie's days are structured. Mornings spent in physical therapy are the most painful. Just moving her arms two inches can bring her to tears. Stretching, necessary to keep her muscles from atrophying, is excruciating.

"If you just grab my arm, the nerve pain, it burns," Melanie said. "It's like you can feel it going through the veins, like fire."

Afternoons are for occupational therapy, practicing the movements that will, eventually, let Melanie feed herself, brush her teeth and perform other activities. Speech therapy twice a day is for more than just talking more clearly -- oral exercises also help with breathing and managing food.

It all works together: as Melanie's core strength increases with physical therapy, it helps with her breathing and speech; it helps her use the arm supports in occupational therapy.

"She has been one of the most compliant individuals to her treatment program that I've ever met," said speech therapist Evelyn Cole.

"If they tell me to do it, I do it, even though it may hurt," Melanie said.

The price is exhaustion. But the goal, getting to go home, motivates Melanie.

It's also exhausting for Justin, who begins the 25-minute trip from Blount County in time to arrive for morning therapy sessions. After lunch, he goes to work, where his employer is allowing him an abbreviated schedule. He returns for several hours in the evening, helping her eat her pureed dinner, then drives back to Blount County, picks up Hadley from his parents' house, and takes her home. Though he's tired, nights are long; the house feels empty without his wife.

"It's a lot to juggle," Justin said. "I'm not blaming her, but it's a new lifestyle change. But we're plugging along. I think I've handled it better than I thought I would."

One of the highlights of Melanie's weeks is also the hardest: visits from Hadley. Hadley misses her mother, talking about her and carrying around a photograph of her parents, which she kisses, when she's home. And Melanie misses her daughter, cataloging new words she has to hear about secondhand: "baby," "banana," "shoe." She watches Hadley's first steps on video.

By now, Melanie can move her head, though she still has some facial paralysis. This gives her new freedom. She can use her head to hit a nurse-call button and to steer a power wheelchair, which she gets on March 4. Now she can chase Hadley toddling down the hallway on visits.

Everything is still an effort. Swallowing food, even breathing requires her concentration. But Melanie wants to be home by the end of April, before Justin's birthday and their wedding anniversary, and she wants to be able to transfer herself in and out of the chair without Justin's help. In anticipation of the homecoming, her brother and uncle have built a ramp at her home. Cindy visits East Tennessee Technology Access Center's "loaner closet" to borrow some medical equipment: a Hoyer lift, commode seat, transfer bench and a manual wheelchair.

Melanie stands, with the help of equipment; her blood pressure drops, but it doesn't hurt. She sits, with no support, on the edge of the therapy table for "three minutes, almost."

Often, lying in bed, she'll try to move each part of her body, to see if she can. One night, all of a sudden, with Justin looking on, she could move her legs and feet a little.

"He was like, 'Your feet are moving! Do that again!'" she said. "I did get really excited. I think he did, too."

By the end of March, Melanie can eat solid food, though she's still getting supplements through the tube since eating is so fatiguing. In an attempt to increase her appetite, her Mammaw brings homemade beef stew and brownies. Some nights, Cindy or Justin takes her to the hospital cafeteria for dinner. Friends bring her Starbucks. She's lost about 25 pounds.

For several days, Melanie has bad pain in her arms from the elbows down. Then, a few days later, she can move a few more fingers.

She can turn her power chair on, drive it in forward and reverse.

She learns to use a mouth stick, so that she and Justin can compete at Connect Four and cards and she can use an iPad.

"The mouth stick, right now, is a way for her to access those items and still feel like she has some control," said occupational therapist Bethany Edmond, "to take away some of the isolation."

On March 25, Justin comes in the evening, and Melanie hands him a note she's written herself.

"When this is the 1st thing your wife writes in 2 months, all while holding a pen in her mouth, there is nuthin' left to do but wipe the tears from your eyes," he writes on Facebook later. "Love this woman!!!!!"

A week later, Melanie gets an official "discharge date": May 5.

APRIL

On April 10, Melanie, Justin, Edmond, registered nurse Therese Woods and some students take the center's bus to lunch at the Alcoa Olive Garden, then to Melanie's Maryville home. They're there to see how the house will have to be modified.

Slowly, Melanie comes down the lift and tentatively rolls up the driveway to the ramp. With Justin walking backward, facing her, she goes up and through the front door.

The first stop is the bedroom, where they practice transferring Melanie from the chair to the bed -- an endeavor that's pretty frightening for her.

"I forgot how good my own bed feels," she said, sighing and lying back as Justin brings in new outfits for Hadley for her approval. ("I'm the worst baby-dresser," he confides.)

After Edmond and Woods make some suggestions for rearranging furniture, they look at the tiny, 1957-era bathroom. Woods has Justin bring in tools, and together they remove the door from the frame. They ultimately decide the sink and vanity, too, will have to temporarily come out.

"I can brush my teeth in the kitchen," Justin said, laughing.

The trip home is bittersweet for Melanie.

"It's really depressing because I'm not coming home," she said. "Tonight, I'll be right back where I was."

At this point, Melanie's getting movement in every single muscle group. By the middle of the month, "she now has the ability to sit on the edge of the mat with us just standing by, and she can hold herself, which is a big thing," said her physical therapist, Tricia Erpelding. "And she's doing weight-shifting," a movement she'll need to use a transfer board, "so that's a big accomplishment."

The pain has decreased; she can be stretched without crying out. The amount of pain medication she needs has lessened. She's showing her sense of humor to her therapists.

But she still has hard days, when "she's not feeling like she's able to be the mother or the wife or the daughter-in-law she used to be," Edmond said. "We're working on finding new ways to fulfill those roles. It's going to be different now."

One day, Cindy and Don practice using the lift with Melanie, which brings her to tears.

"She was upset that her in-laws were having to take care of her," Cindy said. "She's really struggling with that. I told her, that's what family does. We love her. I told her, 'Besides, you may have to do this for me some day. There's strings attached to this.' She kind of laughed about that."

Melanie is both stubbornly independent and very reserved by nature, while Cindy describes the Kytes as "huggy, touchy-feely." Before GBS, Melanie still held back some at family gatherings. But this experience, she said, has made Cindy and her as close as mother and daughter.

"I wouldn't take anything for them," she said of her in-laws.

She's developed a closer relationship with her cousin, who visits frequently. The number of people praying for her recovery has increased her spiritual faith, she said.

And she's learning patience. Toward the end of April, Melanie learned her "discharge date" has been withdrawn. Her stay is now open-ended.

"She is getting better, but in her case, it's very slow progress," said occupational therapist Beth Melancon. "Sometimes with GBS, you see like almost overnight progress. It's really, really fast. But hers is not progressing as fast as I think we thought it would initially."

MAY

Melanie could have seen losing her discharge date as a setback. But she's somewhat relieved she'll have time to grow more independent before returning home. She wants to be able to use a manual wheelchair, and she'll need hand movement to do that.

"I can move my arms and lift them, but I can't lift my hands," Melanie said. "My hands feel like they weigh a ton, and I can't grip."

Hadley visits more often now, climbing up on the power chair to see her mother, to apply lip balm and give "sugar" and, sometimes, tug at Melanie's feeding tube.

"She always makes me laugh," she said, telling Hadley, "Are you funny? I think you're funny!"

Melanie has also learned to use voice commands on a Samsung phone to make phone calls and send texts.

"Now I can talk to people instead of looking at the wall," she said. "I text my friends and my brother; I probably bug Justin to death."

Besides her visitors, she's made friends among the other rehab patients, at least some of whom also have GBS.

"I used to be very shy and keep to myself," she said. "Now I'm like, I've been in my room for two days -- I need conversation!"

There are still bad times, like when she has to be showered.

"That's probably when I feel the lowest," she said. "It's just something you've done your whole life, and now you're a grown woman and have to have help."

She's resigned to the fact that her May 28 wedding anniversary won't be spent at the Gatlinburg hotel where she'd already made reservations. But she has her eye on other goals.

"I want to get down on the floor and play with Hadley," she said. "I want to go outside and chase her. There's so many things you take for granted."

Thomas, her neurologist, thinks she'll do it again.

"When someone has that much disease, you worry, are they going to have residual disability?" he said. "I have hope she'll recover. I've seen people as bad as her get back to normal."

"Everyone says I'm starting to look more like me, but I don't feel like me," Melanie said. "I want to start walking again."

In lieu of that, today she will leave Patricia Neal for a few hours, to go to a combination get-together and fundraiser in her honor on a small island owned by friends. There will be food and music and fun.

With Erpelding's guidance, she'll ride with her husband in their own vehicle, manual wheelchair folded up in the back. For the day, she can think about how, with more hard work, she'll later be leaving it behind for good.

It's almost, almost within reach now. She just has to keep working on her grip.

WHAT IS GUILLIAN-BARRÉ SYNDROME?

Guillian-Barré (pronounced Gee-YON Bar-RAY) syndrome affects the nervous system. It happens, scientists think, when the body confuses part of a virus with myelin, which forms a protective coating on nerves. The result is that the body attacks the myelin, causing weakness, pain and sometimes paralysis until it grows back. It typically starts in the feet and legs and works its way up.

Despite research, there's no definitive cause. The Campylobacter jejuni bacterium and the cytomeglovirus, in the herpes family, are thought to be culprits, and an estimated one in 1 million people may get GBS from an immune reaction to the influenza vaccine.

"I tell people to get the flu shot" anyway, unless they've already had GBS, said neurologist Dr. Darrell Thomas, who treats several GBS patients a year. "You're more likely to have complications of the flu than to get Guillain-Barre."

Melanie Kyte hadn't had a flu shot; she had a small cold a few week prior, but there's no way to know if that caused GBS, Thomas said.

Nor is there any way to tell why her illness was so much more severe than the majority of GBS patients he says, some of whom recover without hospitalization.

GBS is life-threatening when it affects the muscles needed to breathe, or affects heart function and blood pressure. But since the advent of treatments that shorten its duration, in the late 1970s, fewer than 5 percent of people will die from it, Thomas said, and those people have a host of other health problems or "extenuating circumstances." The treatments themselves can cause complications -- blood clotting problems, kidney failure, infection -- but those are rare, he said.

Two treatments can shorten GBS's duration. Plasmapheresis, in which a patient's blood is removed to filter out the antibodies thought to be causing the immune reaction, then returned to the body, is a 10-day process that's been used since the 1970s. Doctors can also administer immunoglobulins intravenously, to neutralize those antibodies. Studies suggest the two methods are equally effective, so in otherwise healthy patients like Melanie, Thomas tends to use IVIg, since it takes only five days.

Thomas said most GBS patients fully recover, though some do have foot drop, weakness or neuropathy. The literature said there's a 20 percent chance of relapse, but Thomas thinks that estimate is high.

Recovery takes longer for some people than for others, he added. He has hopes Melanie Kyte will recover fully, though he can't predict how long that might take.

"Most people get back to functional independence," he said, though "if someone does neurostudies on her in five years, they'll probably be able to tell she had GBS."

Mother's Day for Melanie at River John's Island

Where: River John's Island, 4134 Cave Mill Road, Maryville

When: Noon-8 p.m. today

What: Swimming, canoeing, picnicking on the Little River; bring your own food and drink. Canoes provided free by River John's Outfitters.

Donations: Benefit Melanie Kyte, who is recovering from Guillain-Barre syndrome

Info: www.riverjohns.com

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