A Mother’s Intuition
My oldest child Abby was almost eight months old. I had been taking her to the doctor telling them something was wrong, but we couldn’t put our finger on what it was. I remember I got fed up and demanded that Abby be admitted to the hospital. The next day a chest x-ray showed her lungs were full of fluid. She was taken by ambulance to Omaha Children’s Hospital.
She was in the PICU on machines and so many IVs. We had dealt with cardiac arrests, DNR’s, and many different specialists. Dr. Fletcher just happened to see her echocardiogram, but he wasn’t her cardiologist at the time. It wasn’t until Abby was almost 13 when we got her confirmed diagnosis of idiopathic pulmonary arterial hypertension.
Abby is now 18 and looking into nursing as a career. She wants to help kids like her. Abby is transitioning out of pediatrics and into adult care. She currently takes Adcirca and Letairis. She is on a sodium limited diet so as a family we watch her salt intake. As a family we love to go on vacations, go sightseeing, and just see the world. She loves to go to the movies and just spend time with her family.
Our family’s favorite vacation was her Make a Wish trip to Disney World. We were able to forget about hospitals, doctors, procedures, and just be a family. I’m pretty sure we ate ice cream for every meal. Abby’s favorite park was Hollywood Studios because she loves everything Star Wars. It was so amazing when our family got to be a part of the Imperial March and walk down the boardwalk with them. That whole week our family was able to focus on being a family. We hope someday to make it back to Disney World. Abby would love to be a star in the castle and we would love to see it too.
Abby loves to do cheerleading, especially for football. Her favorite football team is the Minnesota Vikings, whereas I love the Kansas City Chiefs.
Shortly after Abby was diagnosed, she was on full-time oxygen. She had to have two liters of oxygen. We would have to take her oxygen tanks to the school and carry her portable oxygen machine with us. Abby would struggle walking long distances and just being a kid. She is now able to walk a mile or more without oxygen. It’s so amazing to see. She has responded amazingly to her PH meds and we are so grateful.
-Amanda Howard, Abby’s mother