On October 5th, 2008, my daughter Madison (Madi) was 2 and a half years old, and I was 16 weeks pregnant with our second child. It had been a completely normal day, and I was making dinner. All of a sudden, Madi could not stand up and didn't seem to be able to focus on anything. My husband and I called the ambulance. They took her to Mercy Hospital in Coon Rapids at which point the doctors in the emergency room told us that they suspected she was having a stroke, and sent us in another ambulance to Minneapolis Children's Hospital.
An exam and MRI confirmed that Madi did indeed have a series of small strokes-but why? The investigation began, but it didn't last long. We found out via chest x-ray that Madi's heart was seriously enlarged, and a diagnosis of Dilated Cardiomyopathy was given. Madi was in heart failure. It was explained to us that 30% of children with DCM get better on their own, and that they hoped that with medication Madi could be one of those or at least a part of the 30% that remain stable with the help of medications.
She was hospitalized here and there for "tune ups" for her heart in which she got IV heart meds to give her a boost, and things seemed "okay." Her heart function, though somewhat stable, was not improving, so the cardiologists at Children's suggested starting up a heart transplant evaluation at the Mayo Clinic "just in case." That way, should she need to be listed at some point, the workup would be done and less steps would have to be taken to get her the help she needed.
In mid-July of 2009, Madi started acting funny again and had to be taken to the hospital in an ambulance. It was discovered that one of her medications was not metabolizing correctly and had built up to a toxic level in her blood, bringing her pulse down to the 30s. At that point, a pacemaker was put in to prevent further heart rhythm problems. She did well through the surgery and was extubated right away. However, shortly after extubation, Madi was unable to hold her own blood pressure and respiratory status. She was reintubated, and then cardiologists contacted Mayo to see about transporting her there. On August 5th, 2009, late in the afternoon, Madi and I rode in a Life Link ambulance to Rochester. The hope was that we could tinker with her meds and get her stable there, and if it didn't work at least we would be in our transplant center and could move forward. The surgeon said that he was listing her as status 1A, the top of the transplant list, on August 6th, 2009, so that if "that perfect heart" came along they could take it. A mere 18 hours later, early on the morning of August 7th, 2009, a nurse knocked on our parent sleep room door in the PICU. I opened it to see her standing there, crying, and thought the worst. She told me then that there was a heart available for Madi, and her transplant was going to happen that day!
Madison's surgery took all day. It was around 7:30 pm when we finally got to see her. She looked awful-ashen and full of tubes. At around midnight, panic ensued when it was discovered that the new heart was not working, and she was rushed back to the OR to be hooked up to ECMO, a bedside heart/lung bypass machine. The surgeon and cardiologists suspected-and hoped-it was just trauma from the surgery and that the heart would bounce back with a few days on ECMO. If it didn't, she'd be relisted. Luckily, after a few days, it was determined that Madi could be taken off of ECMO safely, and the new heart was working beautifully. Later, when the pathology report on Madi's old heart came back, it was found that she had an enormous blood clot sitting there waiting to throw into her lungs. It most likely would've killed her. The fact that a heart came in 18 hours-and in fact, there were two offers of hearts for her that day-is nothing short of a miracle. Today, Madi is eight years old. She does have delays and disabilities due to her ordeal, but she greets the day with a smile and faces her challenges head-on. I am so proud of her. We face a future that will be sure to be full of ups and downs, medications, appointments, and probable future transplants. It's a future, though, that we wouldn't have if not for the grace and selflessness of a donor family on the East Coast that chose to save Madi's life. In their darkest hour, they thought of a family that may be out there, waiting on a miracle for their child, and they gave us that miracle. To say that I am grateful is the understatement of a lifetime, and I will never quit being an advocate for CHDs and organ donation.
Cakes From Grace made a "Bubble Guppies" themed cake for Madi's 8th Birthday party. This is what Linsey had to say about the cake.
"It was an awesome thing to have a cake from Cakes From Grace at Madi's 8th birthday party. We were all talking about how you could tell the cake was made from scratch. (And baked with love of course!) We shared some of the extra cupcakes with the neighbors later that evening and they all loved them. For me, I loved the frosting the most cause it didn't taste like plastic chemical junk, just pure numiness!!! I am looking forward to trying more flavors.. especially the Gracie cake!"