Fragments and Money

fragmented winterBetween the December day when we received news of our daughter Sammi’s impending cardiac surgery and the surgery itself were nearly five fragmented, breath-holding months. During that time, life went on as usual: school, work, meals and concerts and the usual patterns of life with two children.

My days, already naturally broken into small chunks of varied activities, crumbled into bite-sized pieces of work and daily chores mixed with anxious Google searches and conversations over phone and email. In the autopilot that clicked on during repetitive activities like cooking or walking my children to school, I sometimes found myself unable to remember what had been happening in the previous ten minutes. How had I gotten to this corner? When did I add the onion to the pot?

Throughout, I was honest with friends and family about what was happening. Many had been with us for the Sammi’s entire medical journey. They had prayed and visualized a pink and smooth esophagus on each of her many endoscopy days. Some had arranged a spot in their pantry for a new, unused cutting board and disposable baking pans so that they could invite us for dinner during the hardest weeks of the six food elimination diet. These people were experiencing this with us, many of them nearly as deeply in love with Sammi as we were. They deserved to be in-the-know, and so I held very little back. We talked openly about the surgery and what it would entail; we shared whatever we knew and accepted their promises to hold us in their positive thoughts, whatever shape those took.

But some of them — more than a few of them — asked us the multimillion-dollar question: are you thinking about a lawsuit?

This was not a ridiculous question, held at face value. After all, Sammi had been through a dozen endoscopies, each followed by a clinic appointment, usually resulting in us reaching our insurance out-of-pocket maximum by the spring each year. David and I had missed work to attend these procedures and appointments. We had spent thousands of dollars on specialty foods for her elimination diet. She had been on anti-reflux medication for six years. All of that would have been avoided if the gastroenterologists — beginning with the first doctor who “scoped” her — had fully read her chart and looked to see, using a simple barium swallow test, if her esophagus was structurally compromised after the 2006 repair of her double aortic arch. The total monetary value of this misdiagnosis for us — let alone for our insurance company — is probably enormous. There’s no doubting that.

In the months leading up to the aortopexy surgery she would face in 2014, however, we just didn’t want to talk about lawsuits or money. I lived in fear that even mentioning that to anyone connected to the hospital would result in their refusal to let the surgeon perform the surgery, or that it would create a hostile environment for her or us. These might have been irrational fears, but I felt fierce and scared at the same time. Whatever I had to do to protect my daughter, I’d do — and so I said, consistently to anyone who mentioned a lawsuit, “I can’t even think about that right now. We need to get through the surgery first.”

And that was true.

And it was also not-true. I thought about a lawsuit in short bursts, and, like the contractions of labor, I shook those thoughts away violently in between their surges. Money was something I was grateful — deeply, deeply grateful — was not a problem for us. Between my husband’s excellent full-time job and my small consulting business, there had not yet been a medical bill we couldn’t pay. We had bought the pricey groceries and taken the time off work — though we grimaced at the cost, none of it crippled us in any way. There were many nights, sitting cross-legged on the floor surrounded by medical bills and explanation-of-benefits documents from the health insurance when I looked up from the mess and thanked heaven for our financial stability. It hurt to pay those bills, but only philosophically, because of what they represented. Every time I considered a lawsuit, I pushed the thought away.

kindergarten endoscopyMoney was not something we were missing, and we were grateful for that every single time we paid a bill, but a return of that money would not have helped us prepare for Sammi’s next surgery. A return of that money would not have given back her kindergarten year punctuated by endoscopies and strange foods. A return of that money would not have given her the several inches of height she was missing due to potential malnutrition over years of being unable to swallow correctly. A return of that money would not have given me back the mornings spent wondering if she would wake up from her anesthesia. A return of that money would not have given her sister back the days of giving up her family to a hospital.

A return of that money wouldn’t give us anything we really needed.

So, when friends asked us about a lawsuit during those months, we pushed those questions down the road before we knew where the end of the road would even take us. The days continued to fragment and splinter that whole winter, and money wouldn’t have solved anything useful.

 

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4 thoughts on “Fragments and Money

  1. Wow, what a powerful glimpse into such a challenging time for your family. Thinking of you!

  2. This must have been so hard, though not financially in other horrifying ways. I think your decision to focus on getting your daughter well instead of focusing on suing was so brave and wise.

  3. Reading this really resonates with me and our already long journey with our 16 month daughter. Thank you for sharing your story, and especially, the
    hopeful ending.

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