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“It’s the Little Things”: local care for infant makes big different for family

   Kevin, Hallie and Paige Tillotson in November of 2014.  Since Paige’s birth on May 9th, 2014, her parents, Kevin and Hallie Tillotson, have known her health would be a battle.  The early warning signs included abnormal newborn screenings, refusal of food and inability to sleep. 
     “She would act hungry so I would give her some milk, but I could tell even drinking caused her pain,” said Hallie.  When Paige did eat, she would often throw up.  “It got to the point where she was always fussy, angry, over-tired and hungry and I couldn’t console her anymore,” said Hallie. 
    The Tillotsons started their hunt to discover the cause of Paige’s problems at CHI St. Alexius Pediatrics.  They found Paige had high levels of lactic acid (produced in the body when oxygen levels are low), pumped her with fluids to bring the levels down and sent her home.  It seemed to help at first, but after about a week, Paige’s symptoms returned and the Tillotsons were back on the road to Bismarck.
    At one point, Paige’s pediatrician thought it could be a metabolic disorder (when the body is unable to break down certain foods) and sent the Tillotsons to the Children’s Hospital in Minneapolis.   The tests came back negative.  Then, Paige underwent genetic testing, but no clear answer was found.  The cause of her sickness remained a mystery.
     Over the course of two months, the Bismarck trips went from weekly to every couple of days.   A return after only 24 hours, followed by 11 needle punctures for tests and fluids, was almost unbearable for the couple and hard on Paige.  Together, Hallie and Kevin decided to do something considered unconventional for an infant.  They requested a PICC (peripherally inserted central catheter) line to be put in Paige.  The line would remain in her chest for three weeks and would allow easy access for blood draws and the supply of fluids while eliminating the numerous needle punctures.
     As a young couple just embarking on their one-year anniversary, their newborn’s sickness made life adjustments more drastic.  “We never really got into a family routine,” Hallie commented.  She wasn’t able to return to her normal work schedule as CNA at the Wishek Hospital, but received much grace for time off to care for their daughter.  Hallie and Paige spent days, sometimes nights, apart from Kevin for treatments in Bismarck while he remained at home to continue working at Wishek Manufacturing.
     After two months, the Tillotsons transferred Paige’s care to the Wishek Hospital.  Hallie was impressed and grateful for the lengths to which the WHC staff went to make local care possible for Paige’s abnormal condition.  The providers opened a Standing Order that allowed regular dressing and PICC line cap changes, lactic acid level checks, blood draws and hospitalization if need be. 
     “They even ordered a special kind of dressing and infant PICC caps,” recalls Hallie.  She also noticed the good teamwork among nursing staff as they gently cleaned and replaced Paige’s dressing and cap every three days. 
     While Paige never had to be admitted for an overnight stay, she had direct access to the Wishek Hospital services at any time, day or night.  “Knowing we could come here if we needed something was reassuring,” said Hallie.  “It’s not always the big things that make a difference, but the small things like changing her cap.  That was a big thing to me!   It saved us a two-hour trip and I was comfortable with the people that were doing it.”
     As a CNA who has been on the caregiving end at WHC, Hallie explained that her experience as a mother of a patient has shed new light on the receiving end.  “They helped me learn and answered my questions while also listening to what I had to say,” said Hallie. 
     It took Paige 15 weeks before her body started digesting food properly.  At nine months, her symptoms seemed to have subsided and she was considered a normal, healthy baby.  However, medical difficulties were not over for Paige.  When she seemed to be fully recovered, seizures hit.  Her first one was February 22nd of this year. 
     “It was the scariest day of my life,” recalls Hallie.  “I was on duty at the hospital when the alert came up for a nine-month old who had quit breathing at my address.”  Kevin was at home with Paige when her seizure began.  He immediately called 911 and gave Paige rescue breaths.  Aubrey Atkins, FNP met them at the ER.  “She did everything she could to keep Paige awake so she wouldn’t pass out again,” recalls Hallie.  Aubrey worked to stabilized Paige before sending her to CHI St. Alexius to get a full check.
     While checking in at the Wishek Clinic one month later, Paige fell into yet another seizure. Aubrey happened to be the provider in the clinic at the time and again treated Paige.  “I can’t say enough good things about what Aubrey has done.  We were comforted to know it was the same provider who saw Paige both times.”  After further tests, it was discovered that Paige’s seizures were febrile (with fever) and the Tillotsons are monitoring her temperature.
     For Hallie, these experiences have been difficult, to say the least, but she has seen at least one good thing come out of it, “I wasn’t planning on it, but after all of this happened, it has actually motived me to get my LPN license.”  She is currently taking online classes and aims to complete the required coursework in two to three years.
     The Tillotsons recently moved to Wahpeton where Hallie will continue to work as a CNA and Kevin as a painter for Wil-Rich.  As for Paige, “She is a trooper.  You kind of have to be to go through all of that,” says Hallie.

             To stay updated on Paige’s health, visit her facebook page, “Prayers for Paige Tillotson.”


   If you have a patient testimony idea about yourself or someone you know who has benefitted from WHC services and is willing to share, contact Jenn Lukens at the Wishek Clinic at 701-452-3157.

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