Emma’s post-Kasai journey was a rollercoaster ride of uncertainty, setbacks, and unexpected turns. With the verdict of success or failure looming three months post-op, we embarked on a series of follow-ups with a pediatric GI specialist in Dallas, closely monitoring Emma’s progress through routine blood work. Yet, even amidst this vigilance, ominous signs began to emerge.

About a month post-op, Emma’s temperature inexplicably spiked, sparking fears of a potential liver infection. The decision to transport her via CareFlight to Dallas for urgent treatment was a harrowing moment, underscoring the fragility of her condition.

As the reality sunk in that the Kasai procedure hadn’t yielded the desired outcome, the looming possibility of transplant became ever more imminent. Emma was referred for the placement of a nasogastric (NG) tube, a crucial step to facilitate weight gain and prepare her for the challenges ahead.

What followed was a chaotic whirlwind of hospital transfers, conflicting medical opinions, and bureaucratic hurdles. Admitted to our local hospital for the tube placement, we encountered a maze of challenges compounded by ever-changing medical personnel.

While initial interactions were met with understanding and patience, a new doctor’s arrival brought with it a wave of frustration and disbelief. Driven by rigid timelines and unrealistic expectations, their demands for immediate adherence to a strict feeding schedule seemed out of touch with Emma’s delicate condition.

Amidst this chaos, our resolve to advocate for Emma’s well-being remained unwavering. Despite the hurdles and setbacks, we clung to hope, drawing strength from Emma’s resilience and fortitude. Though the road ahead may be fraught with challenges, we remain committed to navigating it together, guided by love, perseverance, and an unyielding belief in Emma’s unwavering spirit.