Life post-listing for transplantation often teeters between the ordinary and the unexpected. For us, it meant adjusting to a new rhythm punctuated by the looming possibility of a life-altering call. Yet amidst this uncertainty, life continued with a semblance of normalcy, albeit tinged with apprehension.

Monthly bloodwork and bi-monthly visits to Dallas became routine, each visit carrying the silent anticipation of a phone call that could change everything. However, it was in April of 2023 when our journey took a sudden detour. Emma was diagnosed with Paraflu during a hospitalization, which then escalated into a second liver infection, extending our hospital stay to our longest yet – 13 days.

Upon our return home, a fragile sense of normalcy returned briefly, only to be shattered by the onset of complications in September 2023. The hospital became a familiar setting as we found ourselves in a relentless cycle of admissions and discharges.

The first of these episodes was for ascites, a condition necessitating a paracentesis procedure to drain excess fluid from Emma’s abdomen. Witnessing nearly an entire 16oz bottle of fluid being drained was a stark reminder of the fragility of her condition. Yet, just two weeks later, we found ourselves back within the hospital’s walls, battling Emma’s third liver infection.

The following fortnight brought yet another scare, this time with blood in Emma’s stool, prompting fears of varices. Despite the anxiety, we found solace in the brevity of this hospitalization, relieved to discover it wasn’t varices after all.Navigating these turbulent waters has been an exercise in resilience and adaptability. Each setback, though daunting, has strengthened our resolve to weather whatever storms lie ahead. And as we continue to traverse this unpredictable journey, we hold onto hope, knowing that amidst the chaos, moments of tranquility and triumph await us.