Surgery Day...What could go wrong? Well Everything...July 31st : Part 1

It has taken me days to logically process everything we went through on July 31st, 2024 (a day that I will never forget). Today, we wait for the decision on another level of appeals. I thought it would be appropriate to share what I felt that day.

XANAX…Dr. Prescribed (might be my dentist) –I only take it when I am having a medical procedure (yes, a big mess of anxiety when a needle comes near me) I never bring it with me anywhere…It makes me sleep - deep, sound sleep.

But I brought it to Rochester, MN. I still don't know why - Ella would be in surgery for 7+ hours… as I packed up the Advil, Tums, and Liquid IV, I saw it, and I thought - I should take this with me.

BREATHE…Ella had her hands on my face – Breathe, Mom, breathe, it’s not your fault.

All I could think about as I collapsed and put my head on Ella’s bravely, diligently, and thoughtfully packed hospital bag in front of the hospital where the saddest (ok, to be fair, a tie with losing my Mom), most traumatic moments had just played out.

I assumed my traumatized position, a little ball, making myself as small as possible. WHY…at some point, I walked blocks trying to wrap my head around the last 2 hours while my family packed us up from the hotel room we committed to for the next 10 days.

I just kept asking if we could please go home.

As I waited for them to pack up the truck, my phone rang; I immediately knew it was theirs, 507 the Rochester, MN area code I was once excited to see – It was Doctor. I remember her talking, and all I could think was…we WILL get her this surgery, and this Doctor will have my daughter’s life in her hands for hours – I just kept saying, you don’t want to talk to me right now, I have nothing good or pleasant to say. .

I said to call my husband…hung up…I JUST NEEDED TO ESCAPE…just one, is all it took…I hate taking it, I am not a big fan of lots of sleep…it was truly at that moment all I thought would help my internal shaking, feeling of complete failure, and exhaustion from weeks of trying to figure out how to get Ella on the operating table (who says that) and sleeping much less than I usually do – which isn’t much…SLEEP (and I did for 6 hours straight, in a little ball, in the front of Dave’s truck – Can we please go home?)

Let’s back up a bit…

Ella’s surgical admission was scheduled for 5:45 am arrival on Wednesday, 7/31/2024. On Tuesday, 7/30/24, Ella had a full day of physical evaluation, radiographic testing, and a pre-surgical assessment, where the Doctor reviewed the results.

Ella’s recent significant growth spurt and worsening progression of her spinal curvature, we were relieved that she was still a candidate for SVT, but her window is rapidly closing. At around 3:00 pm, I thought it odd that I had not heard from the financial department. After finally eating for the first time that day, I called the financial department to finalize payment. The total due for surgery was $198K, to be paid in full.

She asked if I would pay the $198K by credit or debit. I wondered when we would talk to someone about the deposit, and she said it would be tomorrow morning. Fast-forward to Tuesday at 10:30 pm. I got a call from my friend Angela, who had reposted one of my Instagram posts and tagged @unitedhealthcare. “DOWN TO THE WIRE FOR SURGERY. UNITED HEALTHCARE CONTINUES TO DENY THE PROCEDURE THAT’s FDA APPROVED SINCE 2019.” Almost immediately, she received a DM from United HealthCare and provided Nick with UHC’s my contact information, sharing that we were at Mayo for Ella’s surgery scheduled @ 5:45 am.

I received a call from UHC at 10:59 pm. Keep in mind that neither UHC nor UMR has contacted us once. It took a web crawler, social media monitor, or AI to see negative publicity before they were “concerned.” It was Nick. We chatted (or I expressed my true feelings about this denial – very kindly, funny, not funny), and he assured us a call that never came on Wednesday at 7:00 am – the morning of admission to the hospital. He knew we did not have coverage.

Back to 5:45 am. Once we arrived at the hospital, we waited and were called to the financial office. We left Brody and Ella in the waiting area. We walked in to meet what I would refer to as a financial bulldog. He advised they were not allowing Ella’s surgery to proceed until they had the full payment of $198,000.00 (is this a deposit?) Mind you, for us, this is a cash flow issue. When your cash is not liquid, but tied up in assets, 5 days isn’t enough time to get to it, trust me, we tried.

What followed still feels like a horrible scene from a very sad movie. It started with me running outside with my laptop to find every credit card where we had available credit, our son offering his savings from his summer job, draining every account we had, and the amount we raised on GoFundMe—we had access to a lot—they wouldn’t take it. We even showed them the assets we had available—I told them to put a lien on my house.

The Doctor called to tell me they were canceling - I begged for time, and we were given 10 minutes. We were frantically asking for help from every resource we could think of - yes, it may seem like a lot, but as I look back - it was Dave and I advocating for her future...all things considered...not just soccer but flexibility, opening her lung capacity as she loves to sing, bending over her art at the table for hours, sleeping comfortably, mobility over the next year and years to come, time out of school, the future of airport scanners (funny, not funny), mental health and overall her quality of life.

The Doctor called back and canceled. Five minutes later, we were offered a loan—one I know was decided in the urgency and panic they felt we were going through. They asked us to contact the financial office for the wire transfer details. They understood and believed we were good for it. It was too late. Here is what happened....Part 2