Madison Dugas has spent nearly her entire life at Norton Children’s Hospital in Louisville. Now, eight months later, she’s back home with her family after undergoing a heart transplant.
Beth Dugas, Madison’s mother, said she arrived at their home in Elizabethtown on July 9. Her transplant was June 7.
In November, Madison was born with an unbalanced atrioventricular canal defect, and had open heart surgery at 1-week old to have a shunt put in her heart.
Three months later her heart function started to decline and after being on a transplant list for eight weeks and four days, Madison was matched with a donor.
Dugas said the staff at Norton’s was very supportive and felt as if they truly cared about Madison.
“I don’t know that you could ask for a better team of doctors and nurses and therapists,” Dugas said.
Before Madison left the hospital, Dugas said staff held a small party for her complete with streamers and clapping.
She said since arriving, she has been doing “extremely well.” Currently, Madison is on several medications and diuretics; She has to take an antibiotic, an antiviral and antifungal for the first three months post-surgery.
Before the COVID-19 epidemic, Dugas took a leave of absence from the end of March to the end of June from her job as a physical therapist assistant at Caretenders. During that time, Dugas said she was driving back and forth nearly every day to see her daughter.
After starting work again, she could only see Madison on the weekend. Now that Madison is home, she said it has been nice not having to go back and forth.
“It’s nice to see her in the mornings before work and know that she’s gonna be here at home whenever I get off from work,” Dugas said.
Since arriving home, Dugas said Madison has been sleeping well at night and has been playing with her 4-year-old brother, Parker.
Dugas said Parker is very excited to be with Madison and helps feed her, plays with her and calms her down when she’s crying.
Madison also has a little bit of lung disease which Dugas said is common among individuals with Down Syndrome. They have to monitor her oxygen level since she was on oxygen when she arrived home, but no longer needs it.
Madison will be on two anti-rejection medications for the rest of her life and will have to check her red and white blood cell counts as well.
Dugas said they also have been making sure Madison keeps her food down and have not been going out. She said Madison is very immunocompromised, so the family constantly washes their hands and have limited people from coming over.
“We take all the extra precautions, we have hand sanitizer all over the house and just making all those extra steps to keep her safe,” Dugas said.
She said she wants to stress the importance of organ donations, and said that she would love to one day meet Madison’s donor family.
Overall, Dugas said the process has been expensive on top of hospital stays, medications and the cost of driving back and forth to Louisville. They are currently still accepting donations at GoFundMe.com/miraclesformadison.
Dugas said it has all been worth it.
“I say it all the time: She is priceless,” she said. “We’re going to do what we need to for her.”