A trip to the ER is better when ‘everybody knows your name’

How hospital staff help comfort my daughter with HAE

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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“Norm!” the bar occupants yell in unison.

The long-running sitcom “Cheers” centered around a quaint bar in Boston and the regular patrons who frequented it. One of its tropes was the gleeful recognition of Norm, a regular, when he entered the bar.

At first, audiences looked forward to the throwaway gag. Eventually, however, when fans began to hear Norm’s story unfold and what his life was like outside the bar, they understood that when everyone shouted his name, it was a bright light during some of his darker times. Even the show’s theme song acknowledged that sometimes people want to be where everyone knows them and wants to see them.

Over the past few years, our family has learned that people knowing your name is meaningful beyond a fictional television bar.

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‘And they’re always glad you came’

By the beginning of 2021, even though our daughter, whom we lovingly call Ladybug, was officially diagnosed with hereditary angioedema (HAE), we still found ourselves making numerous trips to the hospital.

Every visit followed the same pattern: Ladybug and I would arrive in the pediatric ER, usually with her face swelling severely, only to have to wait, explain what HAE was to every single medical staff member who came in the room, and wait for her emergency medication before being admitted.

By the time Ladybug reached her 15th ER trip in less than three months, partnered with her growing anxiety about needles, I was doing everything I could to assuage her discomfort. With bringing stuffed animals and blankets and nicknaming the hospital “the hotel,” I attempted to mask how arduous every trip was.

Finally, after new protocols were initiated following a much-needed conversation with the hospital social worker, something remarkable happened. Nurses memorized Ladybug’s story and symptoms, doctors began to ask about our family, and hospital technicians would comment on how tall she was getting. And in one particularly heartwarming moment, a few nurses cheered when they walked in and saw she was their patient.

Even though the reasons we visited the “hotel” were unpleasant, we felt welcome when everyone knew who we were, and our visits became more enjoyable.

Since 2021, with preventive medication and at-home emergency infusions, we don’t have to go to the hospital that often. But recently, after a particularly difficult month, Ladybug made a rare appearance in the ER.

“Hey, sweet girl,” a familiar ER nurse said when she came in to start Ladybug’s IV.

“Oh, I hate that you had to come in, but I’m glad to see you,” a pediatric floor technician said.

“You like arts and crafts, right?” another staff member asked.

Later, when Ladybug finally settled in, she said, “I don’t like having to come here, but they make it better.”

Do we like having to go to the hospital? No. But we know firsthand that our worst days are better when you go “where everybody knows your name.”


Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to angioedema.

Comments

William F RobinsonDDS avatar

William F RobinsonDDS

Danita, as a grandfather I Love your Ladybug Stories. As a patient with AAE, your stories are invaluable! Children shouldn't have to go through all this, but she is one lucky little girl to have such great parents. Bill Robinson

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