My daughter almost died at summer camp. Here’s what I wish I had said to her before she left. | News Today

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“In the months since Eden’s diagnosis, my husband and I practice scenarios in which our children stand up for their safety, their health, and each other,” the author writes. (Photo: Caïa Image via Getty Images)

My husband and I take our semi-conscious daughter through the doors of the emergency room. Under the bright lights of the hospital, our daughter’s body looks like a pile of bones on the stretcher.

what did you do to her?” hissed the doctor.

Sspecialists are called upon with increasing urgency as they seek to find a vein of work. My daughter, Eden, will soon be diagnosed with a disease we had no idea about. His condition is critical. Later, we learn that for almost a week, medical professionals at his summer camp believed that his increasing lethargy, nausea and weight loss were homesickness. Every minute she was left untreated was a minute closer to death.

***

The camp nurse doesn’t seem alarmed when she calls me a few days earlier to tell me that Eden has eaten very little. I’m with my husband, Gary, and our son, Major, on vacation by the lake, having visited our daughters, Eden, 10, and Emma, ​​13, almost a week early for the day visits. At camp for a month, my daughters had seemed well adjusted when we visited, a handful of fresh freckles on their noses. Balancing on water skis with new best friends, they were the poster children for an idyllic summer. So when the nurse says, “It sounds like homesickness to me,” I’m in disbelief.

The next day, when a nurse reports that Eden is in her bunk playing tennis, we drive the car home, ready to wrap up our vacation. A few hours later, however, a camp doctor calls. Eden is back in the infirmary. Camp rules dictate one scheduled call each summer with your camper, except for emergencies. Something in my stomach screams that this is it.

“I’m not right”, mutters Eden. His voice is weak, incomprehensible. Didn’t she just play tennis? Only later would camp photos posted online show her on the courts that day, thin and frail, her head resting on her knees as others volleyed around the courts.

I run through a mental catalog of mysterious medical shows I’ve seen. A disease born from the lake? A parasite ? When we arrive at camp a few hours later, I wait in the car with my sleeping son while Gary picks up Eden. We’ll find a hotel somewhere, I think. She will feel better in our presence.

When Gary comes out of the infirmary with our daughter draped in his arms, I don’t recognize her. Eden’s breathing is labored; she is pale and badly washed. My hands are shaking. I can’t find the seat belt slot. “We need a hospital, Gary.”

As we enter the highway, Eden vomits on her chest. For a moment, relief washes over me. Maybe she took it out, that bug, whatever. But when Eden’s eyes close and stay still, I type the nearest hospital into our GPS.

***

“We don’t know what’s wrong,” I plead. A team of doctors descends on us. Eden’s veins are so collapsed that it takes forever to draw blood and insert her IV. She disappeared into the white pillow.

When he was born, ten years earlier, his weight of 10 pounds surprised everyone. Pink and slippery, it is quickly taken away from me. We are talking about blood sugar, gestational diabetes. But we both have a good health record. I’m too exhausted to realize, although timestamped photos later reveal it took me hours to finally hold my baby.

“Your daughter has type 1 diabetes,” the doctor now says. “His blood sugar is 500.” I hear his words but nothing makes sense. “She has diabetic ketoacidosis,” he says, explaining the critical condition of undiagnosed diabetes. “Our hospital is not equipped.”

Sirens cut through the night as an ambulance takes us to a children’s hospital a few hours away in another town. I ride with Eden in the back. I will not leave her. Although the insulin is already given to her, she still does not respond.

In the intensive care unit, we will discover that his kidneys are failing, his body now acidic. She is 15% dehydrated. She lost 13 pounds. Death is a potential threat. Balancing its sodium, potassium, chloride and insulin becomes a choreography that we must master for it to live. With a threat of brain damage, we wait five days in intensive care to determine if she has fluid in her brain, if she will fall into a coma. I barely sleep on a hard chair, awakened by her screams. We’ll find out that his diagnosis has nothing to do with his high birth weight – it’s an autoimmune genetic condition.

Different chaplains visit daily. I am not a religious person, but I accept all prayers offered. I am certainly not destined to lose my daughter.

When we sent our girls to camp that summer, we told them to treat other adults like parents. In loco parentis. But, as Eden’s actual parents, we would never have dismissed her concerns or ignored the telltale signs of failing health. For a week, Eden knew she needed help. Yet the Tums and Gatorade that were dispensed to him on every visit to the infirmary did nothing to fix the problem. In fact, the sugar exacerbated it.

Camp protocol meant we weren’t called until Eden felt sick enough to ask to sleep in the infirmary. Even then, the symptoms that were described to us were minimized. More often than not, we were told, there are many summer ailments and complaints that seek attention or do not require medical attention. T1D is often confused with other diseases. A simple finger swab or inexpensive urine test is all that was needed to diagnose her. If the protocol had been to test a single drop of blood or urine for elevated glucose levels, DKA and life-threatening complications could have been avoided. When would a medical professional realize that Eden was experiencing an acute medical emergency? We will never know. My mother’s common sense is what saved her.

In the months following Eden’s diagnosis, my husband and I practice scenarios in which our children stand up for their safety, their health and each other. We know all too well the dangers of following the rules and being polite. No adult will ever undermine my children’s feelings again.

“Throw good manners out the window,” I say. “Be relentless.”

The children have been trained not to back up, to demand full visibility. If something is wrong, it probably is.

“Trust your instincts,” I remind them. “Talk to every adult until you join us. Pick up a phone from someone’s desk if you have to. I will always agree with that.

Learning to live with type 1 diabetes that first year was a challenge. Learn to defend and challenge adults and leaders even more. However the following summer, Eden is ready to finish what she started. We find a new camp, run by directors who have a caring and responsive 24-hour nursing unit. To the amazement of many, we send our insulin-dependent daughter to camp for another four weeks. She picks up where she left off on the lake, albeit different, water skiing with new summer sisters. She learns to rely on a care team that listens and observes deeply. She learns to object, to question and to stand firm. Most importantly, she stands up for and trusts her ability to take care of herself. She does this every summer for four more years at a camp that becomes her second home.

Far from the limp little girl in my husband’s arms whose voice was unheard, Eden, a rising high schooler, is now an active, confident teenager who is a JDRF Youth Ambassador, advocate and diabetes educator. Eden maintains that she would not change anything in her diagnosis or in her experience. Her resilience and bravery made her the strongest lawyer I know.

Originally from New York, Stephanie Karp founded a vibrant community of writers in the suburbs just outside of New York City. Her work has been published in Parents Magazine, Fit Pregnancy and Connect Magazine. She is a frequent guest on podcasts on topics such as family, health and wellness. Stephanie’s memoir of her experience adopting her son from Kazakhstan is ongoing. Learn more about her at www.StephanieKarpWrites.com and on Instagram at @StephanieKarpWrites.

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This article originally appeared on HuffPost and has been updated.

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