One day at a time: Recovery from heart failure, stroke, Castleman’s

Liam was a smart, funny and outgoing three-year-old boy. He walked and talked early and was advanced for his age. He loved dinosaurs and could even tell you which ones ate meat and which one could fly.

On June 4, 2013 we took him to our local ER in Indianapolis for a cough that wouldn’t go away. After an X-ray, EKG and echocardiogram we were informed that our son had restrictive cardiomyopathy and at some point he would need a heart transplant. A few days later he was discharged home and still his only symptom was a cough. On June 20, 2013 he had a cardiac MRI under anesthesia. He went into cardiac arrest and after 1.5 hours of CPR he was placed on ECMO. Two days later he was transferred two hours away to Cincinnati Children’s. We lived there from June 22, 2013 until May 1, 2014. While there he was also diagnosed with Castleman’s disease (similar to Lymphoma but not cancer).

On July 31, 2013 he received a Berlin heart. A Berlin Heart is a ventricular assist device that helped the left side of his heart function. The Berlin is considered a bridge to transplant. He was finally listed for a new heart on September, 18, 2013. Unfortunately on October 1, 2013 he suffered a stroke and was placed as inactive on the transplant waiting list for eight weeks until we were confident his stroke would not progress. Strokes are a known potential complication of ventricular assist devices. Despite the best efforts to prevent clots and bleeding while on the device, these adverse events can occur. Thankfully he received his perfect heart on February 25, 2014.

After his stroke there were many unknowns. Liam was unable to walk and talk after the stroke. He didn’t move. Instead of looking at us, he looked through us. Seeing him in this state was by far the hardest thing we’ve ever had to face. Just days prior he was happy and animated. We had adjusted to living life in the hospital and we were impatiently waiting on the perfect heart. The Berlin required Liam to stay in the hospital until a heart became available.

The stroke happened so quickly and unexpectedly that I think we were all in a state of shock and disbelief. Liam had already been through so much being intubated and sedated for six weeks. We were still digesting his restrictive cardiomyopathy diagnosis when he went into cardiac arrest after his MRI and before we could breathe a sigh of relief knowing he was finally listed for a new heart when the stroke happened. The whirlwind of ups and downs we faced was overwhelming.

We were two hours away from our home and everything we’d ever known. The families we met in the Cardiac Intensive Care Unit (CICU), and the staff became our family. We lived at Cincinnati Children’s for 315 days. I was seven weeks pregnant when Liam was diagnosed. My entire pregnancy was spent sitting at Liam’s bedside praying for a miracle.

Today Liam is doing well and continues to recover from his stroke. Since the stroke he’s been in a wheelchair and is re-learning to stand, walk and talk. The stroke by far has been the hardest part of his recovery. He was three and a half years old when diagnosed and he will turn six in November. He does new things every day. He amazes us with what he understands even though he can’t always tell us what he wants or needs. He is doing more today than he could this time last year and I believe with everything in me that this time next year he will able to do even more.

The staff at Cincinnati Children’s hold a very special place in my heart. They were a part of both the happiest and saddest times in our lives. They took time to listen and explain what was happening. They laughed and cried with us. We can never thank everyone we met while there enough for their love and support. Liam has follow up appointments every few months and walking into the building still feels like home.

Liam received extraordinary care while there. What meant and still means the most are those who believed in him. The doctors who took the time to listen to our concerns and include us in the decision making. The nurses who allowed us to participate in Liam’s care. Those who believed what I have said from the beginning, “It wasn’t his time” and “he will do more”. No one could predict his future after the stroke. His doctors are amazed with how much he has recovered and I continue to tell them that he will do more. I don’t know how I just know that he will. One day at a time.