Aurelia’s Story (In Mom’s Words) - Nemours Blog

PATIENT STORIES

Aurelia’s Story (In Mom’s Words)

The day before we were admitted to Nemours Children’s Hospital, Florida, my daughter, Aurelia, had had a bit of a cough, a fever, and was vomiting. I took her to two different urgent cares, and they both told us it was just a virus, and she was fine. That night I slept in the bed with her because I was concerned about her fever. 

In the middle of the night, she started having trouble breathing and her lips turned blue. We took her to the emergency room and she was transferred to Nemours Children’s. There, she was diagnosed with septic shock, pneumonia, and heart failure due to strep and human metapneumovirus. She was put on a ventilator but she still wasn’t getting enough oxygen, so she was put on ECMO to see if that would give her heart and lungs time to heal. An ECMO machine is similar to a heart-lung by-pass machine used in open-heart surgery. It pumps and oxygenates a patient’s blood outside the body, allowing the heart and lungs to rest.

We very nearly lost her. It all happened so fast. I went from “my child just has a little cold” to “I might lose her” over the course of a few hours.

Every single doctor, nurse, and staff member we met while at Nemours treated us with kindness, compassion, and the utmost care for my daughter’s wellbeing. They saved her life and they are all heroes to our family.

Every step of the way, they made exactly the right decision at exactly the right time to keep my daughter with us. Putting her on ECMO was scary for us, but they knew it needed to be done and it’s the reason she’s alive today. We have so many people at Nemours we would like to thank including Dr. Kahana, Dr. Pott, Dr. Nelson, Lisette, Tim, Ariana, Will, Sabrina, Luis, Ellie, Kailee, Maryann, Tatiana, Ashley (both Ashleys!), Dr. Longani, Dr. Hessel, Dr. Koshel, Dr. Jones, Dr. Parker, Dr. Piggot, everyone in Child Life and music and art therapy, and too many others for me to remember all the names, but I will never forget their faces. 

During the absolute worst time in my life, these people made things bearable. They made sure we knew that our daughter and our family mattered to them, that this was more than just a job to them. So many times Dr. Kahana, Lisette, Will, and other nurses and staff members personally took the time to hug or comfort me while I was so afraid I was going to lose my baby.

Shortly after Aurelia was taken off ECMO and the ventilator was her fourth birthday. We were so upset that she was going to have to celebrate her birthday in the hospital, but Child Life made sure it was incredibly special. They and some of the nurses decorated Aurelia’s room, made sure she had presents, made sure music therapy came by, and just overall made it a very special day. Some of the doctors, nurses, and respiratory therapists who weren’t even treating Aurelia anymore stopped by to see her on her birthday. This is a hospital full of people who truly care.

When it was finally time for Aurelia to leave the hospital, Child Life organized a little parade for her all the way through the PICU, with music (her favorite song from Tangled) and bubbles. Everyone came out to clap and see her off. It was so, so special. I cried, but they were finally happy tears.  

Today, Aurelia is doing great. Miraculously, she is going to come out of this with only a very small scar from the ECMO. She has no brain damage, no organ damage, and her heart has completely recovered. This is entirely, 100% due to the amazing work that the doctors, nurses, and staff at Nemours do. She’s going back to school on Monday like nothing happened. She’s back in ballet and will get to keep dancing thanks to everyone at Nemours.

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