Tag: Caregiver Perspective
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The Limits of Delegated Care
Seizure Safety, School Nursing, and the Gap Between Policy and Practice Michigan’s Seizure Safe Schools legislation is an important step forward. The legislation focuses on seizure recognition training, individualized seizure action plans, emergency medication administration, and legal protections for those responding to students with epilepsy. These are meaningful protections, and increasing seizure education in schools…
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What is Hypoxic Ischemic Encephalopathy? A Caregiver-Focused Explanation
When you first hear the term hypoxic ischemic encephalopathy, it usually isn’t in a calm or controlled setting. It’s often delivered quickly, during a crisis, and surrounded by unfamiliar language. Most parents hear the words before they have any framework to understand what they actually mean. This is a grounded explanation of what HIE is,…
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When a Mother Isn’t Trusted: Parent Experience in the NICU
By that point in the NICU, my daughter was more stable, but we were in the part that lingers—the feeding, the waiting, the slow stretch before discharge. I had been changing her, holding her, and learning her cues. Not perfectly, but consistently. I wasn’t new to it anymore. One day, I was in the middle…
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Between Critical Care and Daily Life
I created something I wish existed when I was first navigating my daughter’s diagnosis. As a parent, I’ve lived through both ends of the NICU spectrum—including a severe HIE course and the uncertainty that follows when the hospital stay ends but the questions don’t. There’s so much clinical knowledge in those moments. But very little…
The Neuro Care Bridge 