When Children’s Nebraska shuts down its private duty nursing program on October 1st, the Thoene family’s world turns upside down—especially for their eight-year-old son Levi, who relies on overnight and school-day nurses for his spinal muscular atrophy care. These nurses aren’t just caregivers; they’re family, trusted to handle Levi’s delicate needs with precision and love. With just weeks until school starts and eleven families affected, the Thoenes scramble to find replacements while grappling with the emotional toll of losing that deep bond. Though the hospital offers alternative agencies and continues to support medical needs, the personal connection is irreplaceable. The school district steps in to help, but for families like the Thoenes, who live by their “Levi tough” motto, this isn’t just about finding a new provider—it’s about preserving Levi’s safety, comfort, and dignity.
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