Resilience in the CICU
Today, our son underwent a cardiac catheterization in Philadelphia, a critical procedure with three objectives. First, the team needed to assess the structures of his heart. Second, they had to carefully observe his pulmonary veins, which have been affected by pulmonary vein stenosis—a condition that causes the veins responsible for carrying oxygenated blood from the lungs to the heart to narrow and restrict blood flow. Finally, the interventional cardiologists aimed to balloon any areas requiring dilation and, if necessary, place stents to help keep the veins open.
Our hope going into this procedure was that the narrowing in his pulmonary veins would have slowed or at least remained minimal. Unfortunately, the team discovered that one of his pulmonary veins was almost entirely occluded. However, they were able to successfully balloon and expand the vein, allowing better blood flow. Over the last few days, Diana and I had noticed a slight bluish tinge to his skin in some areas, but since his activity level and energy remained strong, we didn’t feel overly concerned going into this procedure. We never expected that one of his pulmonary veins had become so severely narrowed. This news weighed heavily on us, intensifying the already anxious wait for hourly updates.
The cardiology team was able to successfully balloon and stent other areas to restore better blood flow. But this wasn’t the outcome we had hoped for. Instead of being able to wait six months before the next procedure, we are now facing the likelihood of another catheterization in just two or three months. The risk of his veins deteriorating too quickly and causing severe health issues is too high to wait any longer. When his veins are functioning properly, the doctors are often comfortable allowing him to go six to eight months between procedures, but today’s findings mean we are back to a more frequent and urgent schedule of interventions.
Despite the difficult news, we are deeply grateful to the medical team for their skill and precision in preserving his system. The complexity and delicacy of this work is remarkable, and we are fortunate to have them guiding us through this journey. It’s moments like these when their expertise feels like nothing short of a miracle.
As we process today’s developments, I can’t help but feel the absence of my father more acutely. Just two months ago, I would have picked up the phone and talked to him about this. His steady voice and presence would have brought comfort in this storm. Now, as we grapple with our new reality, the weight of his absence is heavier than ever.
At the moment, we’re waiting for the call that will let us know our son has returned to the CICU. Right now, it’s important to stay positive, even when the news is hard. And while maintaining positivity can feel almost impossible at times, it is essential for getting through these challenges. Positivity helps us manage the emotional roller coaster that comes with uncertain outcomes. It’s not about ignoring the fear or pretending everything is fine, but about focusing on hope and on the small victories that get us through each day.
In the darkest moments, when the fear feels overwhelming, positivity becomes our lifeline. It’s what helps us see beyond the present uncertainty to the moments of laughter, love, and connection that keep us moving forward. For any family facing similar struggles, it’s important to remember that the journey to good health is rarely a straight line. Setbacks like these don’t erase progress—they are part of the process. This understanding keeps us grounded as we prepare for what’s next.
Now, we’re focusing on planning for the future. Our goal remains the same: to get our son to a place where he needs fewer interventions and can live a healthy, independent life for as long as possible, though we understand the need for regular monitoring may continue. I’m grateful for the love that sustains our family through both good and tough times, and for the incredible team of doctors who continually guide us toward hope and healing.
For now, we take this one step at a time, digesting the news and preparing for the next part of the journey. With each day, we remain committed to keeping our son’s health and happiness at the center of our decisions, and we hold onto hope that brighter days are ahead.
