What Is It Like to Have a Patient Concierge When You’re Living in a Hospital?

Worried parent with her daughter at the hospital

Hospital services can help parents with seriously ill children remain with their child throughout the duration of their medical treatment.

Can you imagine practically living in a hospital for 2 1/2 years?

Not so long ago, that was Margaret’s reality. Her daughter, Sofia, needed advanced medical care, so they left their home in Michigan for Cincinnati Children’s Hospital Medical Center.

“Over the course of my daughter’s treatment, we called a small room in the intensive care unit home,” Margaret said.

Everything Margaret knew including her family was hours away. She was alone taking care of her sick daughter and rarely left her side out of fear that something would happen and she wouldn’t be there to help her. Sofia was in isolation, so visitors were restricted.

“My daily interactions consisted of nurses, doctors, patient care assistants and respiratory therapists. My life’s soundtrack reduced to beeping pumps, whooshing monitors and shrill ventilator alarms,” Margaret said.

Sofia as a young girl started displaying symptoms at six-months of age.

Parenting From the Intensive Care Unit

“Living in a hospital is difficult to wrap your mind around unless you’ve experienced it. It’s disorienting and difficult to navigate. Hospitals weren’t designed as long-term housing. Consequently, I faced a lot of challenges obtaining resources beyond the hospital’s campus. Simple things like grocery shopping, paying bills or having a meal that didn’t include institutional food were, at best, difficult to secure.

I’m strong-willed and independent by nature so losing the freedom of self-sufficiency was devastating. I had a car and a keen sense of direction, but I couldn’t leave Sofia’s side.

Most parents in my shoes struggle with the emotional conundrum of desperately wanting to leave the confines of the hospital, but not their child’s side. Any moment could have been Sofia’s last and what if I wasn’t there to comfort her in her final moments? How could I live with myself if my daughter ended up leaving this world alone because I was shopping for toiletries at Target or picking up a latte from Starbucks?”

Sofia surrounded by her family.

Paying it Forward With Hospital Services:

As Margaret’s world at the hospital expanded, she came to see that more families than not were in her same shoes. It’s the reason organizations like the Ronald McDonald House exist which helped Margaret as well.

Margaret started  introducing “newbies” to the hospital’s concierge team. Together they became a community of support for each other.

When Margaret’s journey ended as a patient’s parent she found herself being called to help other families as a hospital concierge.

She says “Living in loneliness, isolation and fear as the parent of a sick child taught me about the emotional aspect of healing. I want to be a healing presence for every one of our hospital guests, patients and patient families.”