RALSTON, Neb. (KMTV) — Eight-year-old Levi Thoene has a bedroom full of medical equipment and requires nearly around-the-clock care from nurses he has grown to trust. Now, just weeks before school starts, that care is in jeopardy.
Last week, Levi's parents, Morgan and Brandon Thoene, planned a family road trip when they received a call from someone they knew at Children's Nebraska.
"They're like we need to discuss something about private duty nursing and so we're like okay this must be something serious," Morgan said.
The call delivered difficult news: the private duty nursing program that staffs a nurse to help Levi when his own nurse cannot be there is discontinuing on Oct. 1.
Nurses come to the Thoene home overnight so the family can sleep, and during the day, nurses accompany Levi to school. Because of his spinal muscular atrophy, nurses help him eat, write things down, and stand by in case of a medical emergency.
Levi is about to start third grade. While he has missed school time due to illness in the past, the Thoenes say he is feeling healthy today, and has seen more consistency on new medication. Still, they warn he could face a late start if they cannot secure a new provider before school starts in about two weeks.
"It doesn't really allow us enough time to like adjust and really wholly make a good decision," Morgan said.
Children's Nebraska did not offer a specific explanation for the discontinuation when asked.
"Children’s Nebraska has made the very difficult decision to discontinue our Private Duty Nursing program, effective Oct. 1. Eleven patient households are affected by this change and our priority is supporting these patient families as they transition to other services. Three other agencies in our community have private duty nursing as their core focus, and two of them care for both children and adults, allowing for greater continuity as the patient transitions to adult needs. Children’s Home Healthcare is assisting families as they transition to one of these alternative agencies and will continue to offer support for these patients’ pharmacy, durable medical equipment, visiting nurse and respiratory care needs," a spokesperson said.
The hospital provided the Thoenes with a list of recommended alternative providers, but the family says the decision involves more than qualifications on paper.
"They personally feel like they're part of our family and we feel the same way," Morgan said.
Today, Levi loves playing video games with his nurses and says they understand how to care for him best. For example, he says being picked up under his arms can be painful. Just like many other kids his age, he loves animals and dinosaurs. By the way, Jurassic World tops the original Jurassic Park movie for the best dinosaur movie of all time, if you ask him.
The day I met the Thoenes, they were preparing to meet with one of the potential new providers. The family wore shirts with the phrase "Levi tough" — a motto that reflects their approach to the challenges ahead.
"Being tough I don't think has anything to do with the relationship being physical strong that determination to be able to the mindset to do difficult things to get through stuff," Brandon said.
The Thoenes are not alone. Children's Nebraska says 11 patient households will be affected by the discontinuation. A spokesperson for Ralston Public Schools says the district is aware of the change and is working to help find new medical partners for students like Levi.
"Children’s Hospital unfortunately recently informed local school districts they would be no longer be providing contracts for private duty nurses to support high acuity students and their individual medical needs at their schools, effective August 1, 2026," a Ralston Public Schools spokesperson said.
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