Big Man’s Battles

DJ (Denzel Jr., affectionately known as "Big Man") has always been a happy and loving boy. He has brought so much joy and light into our lives, his extended family, and, frankly, anyone that has the pleasure of meeting him. It is with this joy and light that it is remarkable to say how much fighting he has done in his life thus far. He is stronger than any one of us could imagine.

While in utero, DJ was diagnosed with a complete heart block. After his birth and short stay at the NICU (neonatal intensive care unit) at the American Family Children's Hospital, he was discharged with a regimen of daily medications and to be monitored closely by his cardiologist.

It was at one of his regular cardiologist appointments, when he was 8 months old, that the check-up showed the left ventricle of his heart was severely dilated. DJ's heart was, and is, simply too large. Only 10 days after that check-up appointment, DJ got his pacemaker. There were several complications during his stay at the hospital; however, DJ got to come home 2 weeks after receiving his pacemaker. As a family, we could see how much the pacemaker was helping our big man. Though still on daily medications, he was crawling to keep up after his sister and doggies, and he was almost ready to take his first steps!

Flashing forward in time to November 4th 2023 when DJ was 15 months old, DJ was not himself and was showing symptoms of what seemed like a respiratory illness, like a cold or flu. After consulting with his regular cardiologist, DJ was admitted to the American Family Children's Hospital PICU (pediatric intensive care unit) on November 8th. He has been diagnosed with severe heart failure and needs a heart transplant.

If this battle weren't enough, DJ's body was, and continues to be, not strong enough for a heart transplant. Discussions with DJ's providers resulted in the choice to use a Berlin Heart, a mechanical support system, to keep DJ's body ready until a heart was available for him. Unfortunately, during the course of these discussions and tests, DJ developed a fungal infection which infiltrated his blood stream, making him ineligible for a Berlin Heart or transplant until the infection clears up. After this roller coaster of ups and downs, the best solution for DJ was to be placed on a life support system (ECMO) which would do the work of his heart and lungs outside of his body. DJ was intubated on November 17th and placed on ECMO on November 28th. As of now, we are waiting for DJ's infection to clear to proceed forward with the Berlin heart system as a hopeful bridge to heart transplant.

During this entire process, which is expected be at least a year, DJ will be staying at the hospital and will be unable to return home until after he receives his transplant and care after that surgery.

We are incredibly grateful for the support we have received from the hospital, family, and friends during this time. Even though it felt this way for our family, life did not entirely stop and continues to move forward as we navigate this process. We are trying to be present at DJ's bedside as much as possible, while attempting to manage a somewhat normal schedule for DJ's older sister Ava, balancing caring for our home, and providing for our family. Any financial support would be incredibly appreciated to try to keep our lives as normal as possible during this time. Donations will be used towards Ava's daycare, paying rent/utilities, and regular bills and expenses like groceries, car payments, etc.

Thank you for taking the time to read just part of our family and DJ's story, and we truly appreciate any amount of support provided.