Every rehabilitation journey is as unique as the person who navigates it. Even within similar diagnoses, the presentation of symptoms and the strength with which they appear can vary widely. When Hayley Meseck first arrived at Madonna Rehabilitation Hospitals in April, she was still learning what Guillain-Barré syndrome (GBS) is.
“I remembered hearing it as a side effect on TV, like ‘If you’ve had this or this,’ but never thought that much of it,” Hayley said.
When she came to Madonna, Hayley had all the common symptoms of GBS. She had numbness and tingling throughout her body, and she was weak. But despite that, she was able to take a few steps with a walker, and she approached her rehabilitation with determination.
“I was thinking, ‘Here we go, I’m going to get some therapy and I’ll be home by May,” Hayley said.
Every day, Hayley participated in several hours of intense physical and occupational therapies. She gave it her all, but she wasn’t seeing the progress she had expected. She was declining.
“It seemed like every day I woke up and there was something else that went down,” Hayley said. “The one thing I remember the most on my first go-round here was that I couldn’t even lift my right hand off the bed to grab anything, and that’s when I knew. I just knew. You know how you can tell in your gut something is not right.”
After two weeks, Hayley had a follow-up appointment scheduled at Nebraska Medicine with her neurology team.
“That’s when they realized Guillain-Barre was not done with me yet,” she said.
She was taken from her appointment straight to the emergency room, where she would spend another three weeks undergoing a second treatment for GBS. She learned that GBS recovery is often described as a roller coaster, and her diagnosis had not yet reached its peak.
“Unfortunately, it just sometimes happens,” Dr. Don Schmidt, Madonna’s senior medical director, said. “But Hayley was fearless. Even in some of those darker days when the respiratory function was declining, I’m sure she was scared, but there was still a subtle calmness that this is going to work out.”
Even while needing the assistance of a ventilator to breathe, Hayley was taking what she had learned from her Madonna care team and doing her best to apply it in her hospital bed.
“She’s on the ventilator for approximately 11 days, and they offered her sedation, and she declined,” Schmidt said. “She really wanted to concentrate on continuing to move those limbs as best she could, continuing to work on her therapies. She just wanted to be in the know, what was going on. She had that underlying determination of, ‘I’m going to get through this and I want to do everything I possibly can to speed up the process.’”
The longer Hayley was intubated, the more her doctors discussed the possibility of a tracheostomy, but Schmidt says Hayley was adamant she would breathe on her own.
“I think she more or less told them, ‘I’m going to be extubated now,’” Schmidt said. “Her work at breathing was doing well at that point that she just flew. She did great. And no setbacks after that.”
Hayley came back to Madonna with a renewed drive to succeed. She was not going to let a small speed bump slow her down. She jumped back into therapy with ferocity. As a mom of two, she knew she had people counting on her and a life to get back to.
“I specifically remember [her kids] came to visit for a weekend after she came back, and I feel like that Monday she just took off,” Madelyn Weaver, MOT, OTR/L, Hayley’s occupational therapist, said. “After that, she was just so motivated to put in the work and get back to them and to being a mother. I feel like we started seeing all those gains every single day and she just took off from there after her kids came to visit over the weekend and I thought that was really, really special.”
The first goal Hayley’s care team set for her was being able to stand on her own. A common symptom of GBS is the inability to know and feel where your body is in space, so standing up was a challenge. She also needed to rebuild the muscle mass she had lost while in a hospital bed. But what she lacked in physical strength, Hayley made up for with mental toughness. She started not only standing, but taking steps, using the Lokomat robotic gait trainer.
“I think she had maybe four sessions, but on her last session, I laugh because in typical Hayley fashion, she kept telling me, ‘I feel like I’m being held back. I feel like I can’t go as fast as I want to go,’ Michala Hueber, PT, DPT, Hayley’s physical therapist, said. “I started lowering down the help that the robotic machine was giving her, and then she just started flying. I go, ‘Hayley, you’re actually powering over the machine,’ so that’s when we knew we needed to progress to the next thing.”
From there, Hayley made quick work of the LiteGait bodyweight support system, the Eva Walker platform walker, a standard walker, and the SoloStep track system. She reached a point where she could take steps on her own without the assistance of a robotic device.
“To hear your therapists get excited right with you makes you even more excited, so you’re like, ‘Wow, I just did that,’” Hayley said. “Also, though, honestly, I was kind of scared. I was like, ‘Did I really just do that?’”
Guiding her through the process, Hayley’s care team saw her confidence grow right along with her physical progress.
“I always say, being a physical therapist or being in any sort of rehab, you kind of have to have a little bit of crazy when you’re trying different things and trying the scary things with patients, but she was always so positive and she was like, ‘Oh, I know I can do it,’” Hueber said.
At the heart of her recovery was Hayley’s family. Her husband, Colby, underwent extensive caregiver training to help prepare them for her transition home.
“This is all part of the job we signed up for when we said, ‘I do,’” Colby said. “At first, it’s nerve-wracking because you don’t want to mess up and you don’t want to see them in pain. I’m glad they showed me ways of helping her to make her life easier. It’s a great little deal that they show you all the tricks, and they do have a lot of good tricks.”
Using Madonna’s Independence Square simulated grocery store, bathroom, bedroom, kitchen and laundry, Hayley practiced all the skills she needed to return to being a wife and mom. Her care team taught her energy-conservation techniques and adaptive ways to do the household chores. A special community outing also allowed her to practice the fun family things she wanted to do. A small request from her daughter, Hayden, gave Hayley the chance to put all she had learned in therapy to the test.
“Hayden loved going to Scheel’s after seeing her mom, and going on the Ferris wheel,” Hueber said. “It just kind of came to me one day. ‘It would be so cool if we could get you into the Ferris wheel.’ She goes, ‘Can we?’”
Hueber went to Scheel’s to look at the layout and determined Hayley would need to navigate three steps in order to get into the Ferris wheel. They started incorporating stairs into their physical therapy sessions in preparation. On a Friday in June, Hayley and Hayden walked confidently into the store and up on the ride. The pair celebrated navigating a rehabilitation journey often described as a roller coaster, fittingly, atop a Ferris wheel.
“All of us kind of got a little choked up because it was something that, her occupation as a mother, she was able to do that with her daughter as part of therapy, and it was awesome to see all the buildup and all the hard work to get to that point,” Weaver said.
Throughout the months-long journey, Hayley’s care team says her success is related to her determination to never give up. She always participated in therapy and tried everything her therapists suggested. She credits a family saying that has turned into a mantra.
“Colby’s famous saying is ‘God gives us the cards that we’re dealt and it’s how we play them,’” Hayley said.
Colby echoed his wife’s sentiment.
“We don’t get a do-over,” he said. “We’ve just got to play the cards we’re dealt. It’s been a long road, and she just kept pushing. She never felt sorry for herself. She just took what she was given and made the best of it.”
This experience has changed Hayley’s life, but her care team says she’s also changed theirs.
“Seeing the smile on her face and just giving her life back so she can go back to being with her kids, being a friend, being a daughter, being a wife and not feel like this is the definition of her life, was just amazing,” Hueber said.
For anyone just beginning their unique rehabilitation journey, Hayley’s advice is simple. Stay open-minded, don’t give up, and celebrate each small victory along the way.