Spring 2022 Edition
Two-year-old Macie Kieffer became a CHC client during a scary time—the height of the COVID-19 pandemic. She lives in Hays, Kansas, with dad Andy, mom Michele, and big sister Avery. Despite her medical complications, she has met many milestones during her time with CHC!
Macie was born with complex single ventricle, which is a term used to describe a group of rare congenital heart defects. Children with this condition have only one working ventricle (pumping chamber) in the heart instead of the usual two. This affects the amount of blood flow to the lungs.
Complex single ventricle is a critical heart condition that requires several surgeries staged over months and years. Macie had her first open heart surgery at 8 days old and spent her first six months of life in the hospital. She will have additional heart surgeries for a total of four by age 4. Macie’s parents hope for an eventual heart transplant or a major medical development that can help her live her best life long-term.
Macie faces the challenges of her condition with courage, endurance and spirit. She deals with low oxygen levels and will have some developmental delay. However, that doesn’t stop her from living each day to the fullest! Alongside her family and CHC nurses Charlotte and Jennifer, Macie enjoys trips to the library, outdoor play at the park, jumping, coloring, preschool activities, and working on her motor skills through physical and occupational therapy.
Pediatric home care allows Andy and Michele to maintain the jobs they need to support their family while ensuring Macie gets the full-time care she requires. Charlotte provides home care during the workday and also attends appointments so she can receive updates on Macie’s progress and take notes. Andy and Michele describe the nurses as family and that they will forever be an important part of Macie’s life.
We are constantly gathering research on new projects and techniques. We subscribe to a Pre-K app for inspiration and enjoy working with the fun activities that Harvey’s mom will find and bring home. Since Harvey is not a big fan of Play-Doh, we’ve done sensory projects with whipped cream, oil and marbles. Currently, we’re working on his colors and alphabet sequence, which he has down pretty well. He knows his animals and their sounds, too.
Our team keeps a book to document all of Harvey’s daily activities and where he’s at so that anyone can pick it up and run with his daily routine. If there is an urgent update regarding Harvey, we are all notified, too. We share the responsibilities involved with his daily care, and we also share the love for a truly remarkable little boy.
Their goal for Macie is that she can do everything kids her age can do without having to struggle to keep up. They feel “very blessed” by the progress she’s made so far and by the nurses, CHC staff, occupational and physical therapists, surgeons, doctors and countless others who have helped Macie along the way.
“We couldn’t have done this road without them.”