Trusting our Gut, Against the Grain

I was chilled to see yesterday's Timehop from 3 years ago, and today's is even worse. Was it a coincidence that it happened the same day? I hesitate to share, but some may not remember why the bougie dilation proposed so confidently by our Utah GI, Dr H, yesterday has us so worried for Audrey. Our wonderful former Utah surgeon, Dr Downey, did Audrey's last rubber bougie dilation 3 years ago before we switched to doing the gentler balloon dilations and, eventually, twice doing stents. It was at UVRMC, close to home, no sweat, dilation number twenty something probably. He was stretching her esophagus gently when he suddenly felt it give way, and knew the tissue had torn. I was not worried. We'd had tears before. It meant some antibiotics, right? He was more concerned than I and transferred us North to Primary Children's because he wanted the more experienced team to place the pediatric chest tube he knew she'd need to drain the anticipated infection from saliva leaking into the mediastinem or pleural space just outside the esophagus, I might be messing up these terms. Basically you don't want a tear in your esophagus. Anyway, we were admitted, they started the IV abx, placed a chest tube, and instead of getting better she kept getting worse. It turned into one of the most traumatic hospital stays we've had by far. Turns out the chest tube team had not accounted for her prior surgeries that had caused the lung to adhere to the chest wall during healing, so her lung was punctured during placement, and no one caught the mistake for more than a day. By the time I begged them to take another x-ray because she was looking awful and struggling to breathe, there were 60ccs of air pressing on her heart. The infection kept us inpatient for almost a month, and we missed what would have been my last lengthy visit to see my grandma C, last before her stroke. Worse, I know that we almost lost Audrey that stay. All from a routine procedure that went just a little bit wrong.

That was also when we found out that Brayton, another EA child in another state's recent passing had come from a cascade of complications from an esophageal stent, and that revelation rocked us mere hours before a stent was suggested for Audrey's brittle, tight esophagus.  It led us to pause, to question, and ultimately to gently decline the suggested course of treatment in favor of seeking a second opinion in Boston. It was too much at once, and we were (correctly as we now understand) frightened that the stent could tear her open.  With as weak as she was, I honestly feel that that decision to refuse the stent, give her a little more time and seek the second opinion where we learned her esophagus was hanging together by a thread of scar tissue, might have saved her life.  In this world of medically fragile kids, so often there are little procedures and seemingly small decisions with big ramifications.  The decision to refuse a doctor's recommended course is not an easy thing to do, especially when you trust and admire them like I do Dr H.  But we have decided to cancel the local dilation and learn what Boston can see at her next scope.