Being a parent is no easy task. Being a parent of a child with special needs or one needing more than the average medical care can be a terrifying role. My daughter never asked to be born with a genetic mutation, yet here she is. A unicorn of sorts where she has an extremely rare genetic epilepsy. In fact, her epilepsy treatment plan cannot follow a typical hospital seizure protocol. When she starts to seize and does not get the appropriate rescue meds and medical care promptly, she will continue to seize and seize. Her seizures are intensely scary from a parental perspective. She desaturates on her oxygen levels and goes apneic. Every time she seizes, another little piece of my heart shatters; thinking of the possible bit of lost potential that she could ultimately have had without this condition. The prognosis for other children with her condition is not ideal. The odds are stacked highly against her, 75-80% end up with cognitive delays (mild to severe), and the majority end up diagnosed with Autism Spectrum Disorder. Many are non-verbal. Our hope for our daughter is that when she enters adulthood, she will have enough cognitive function to be able to care for herself and be self-reliant.

Our latest visit started off extremely rough, the care we received left us anxious and completely lacking in confidence. Our concerns were not being taken seriously and the medical staff wouldn’t deliver rescue meds because she didn’t meet their protocol. Ultimately it took a near-catastrophic seizure where she desaturated to 18. Both the nurse and my husband had to yell for help in the hallway. The first 15 hours were filled with endless advocacy for her because I KNOW HER. I knew my baby needed more than what was being provided for her. We landed in the PICU traumatized and devastated at the idea that we could easily lose her; seeing her dark purple from the lack of oxygen and the lack of the familiar rise and fall of her little chest.

One of our day nurses, Amy Thomas, recognized the strain, stress, and fear she saw in us as we continued to advocate for our daughter’s care. Every alarm sent my husband and me flying to be next to her bedside wondering if we would have to bag her ourselves again. Amy went above and beyond to provide exemplary care for not just her patient, but for us. Every time our daughter moved or twitched, Amy was by her bedside, vigilantly watching for signs that she would have a seizure. She learned quickly to recognize her very slight and subtle signs that something wasn’t quite right. Every time it appeared that my daughter was on the verge of a seizure, Amy had her hand ready on the oxygen in case she needed a blow by or additional oxygen support. She advocated nonstop and researched every possible resource to keep her busy and comfortable - from pain and discomfort management to child life and music therapy to distract her. She offered her cuddles and snuggles to give us a break. She proactively talked us through every action and procedure she did to provide us with explanations and comfort. Her calm demeanor while providing oxygen and bagging during the scary desaturations helped us feel that she was able to bring my daughter’s saturation levels back up and that she had control of the situation. She communicated when she was going on break, stepping away, and took the extra effort to ensure that someone was visibly watching her when she wasn’t.

She made me feel like she was treating and advocating for my daughter like she was her family member. She allowed us to finally rest, to be able to make decisions and to think clearly. She gifted us something absolutely priceless, TRUST in her care and treatment. For this, I am ever so deeply grateful. She did all this without showing any hesitation or effort; it was just a typical day of work for her. I would like to advocate to have her be recognized for her thorough excellence in nursing. She by far has met and exceeded every category listed for the DAISY Award nomination card. The card just did not have enough space to thoroughly explain our wonderful two days having Amy as our nurse.