Caregiver Log: Miracle Workers

NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.

Last November, I was lucky enough to host the awards gala at the League of Minnesota Poets (LOMP) 2022 Fall Poetry Conference at the Arrowwood Resort in Alexandria, MN. After the gala, there was a late-night poetry reading in the LOMP hotel room. One of the big winners is a nurse who works at Mayo Clinic. She read a poem about how patients and their families expect them to be miracle workers, but they’re not.

I get it. We are all still mortal. They can’t save everybody. But with all due respect, she’s wrong.

Jenny and I arrived in Rochester on the evening of Monday, February 27 to an Airbnb, about four blocks from Mayo Clinic’s Saint Mary’s Campus, where I would be staying for two weeks if everything went well, fully aware that Jenny’s surgery could be fatal.

On Tuesday, February 28 around lunchtime, Jenny had her final blood test and meeting with her surgeon, Dr. Stephanie F. Heller M.D. Her surgeon made us feel like what she was about to do was routine and she was not worried at all. Jenny and I spent the rest of the night wondering if that bedside manner was to calm us or if she really was that confident. In hindsight, I think it was both. 

That evening, Jenny and I spent our time joking around and watching home improvement shows. We ordered takeout from Outback Steakhouse. Her brother Tony and his wife Laura came down for the night just in case, just to offer support. We didn’t get to sleep until after 11pm.

At 4:30am Wednesday, March 1 we were up and at ‘em. At 5:30am, we said goodbye to Tony and Laura who headed home as we headed to the hospital. We were in admissions at 5:45am, in the surgical waiting area at 6am, and escorted into pre-op shortly after. At 8am, they wheeled her into the operating room, and I went back to the Airbnb to wait. Mayo has the option to get text messages on the status of the patient which we opted into. At 9:30am, I got the message that the surgery had begun.

This surgery was to correct the open hole in Jenny’s abdomen, an enterocutaneous fistula (ECF), that had plagued her for over two years. This hole was about six inches in diameter and had part of her small intestine sticking out. She was just walking around in the world like this. I said to her more than once, “they send people that look like you to the emergency room.” But her normal surgical team sent her home. Her condition was beyond their skill set and they felt they would only cause her more harm if they tried. She needed a specialist.

We met Dr. Heller at Mayo Clinic on May 2, 2022. She could have said no, but she told Jenny that under the conditions that if she quit smoking, if the inflammation in her abdomen went down, and if she was strong enough, she would perform the small bowel resection and close her up. It took another ten months to meet those conditions.

For the next ten hours, I waited and communicated what little I knew to those that know and love Jenny. At 7:30pm I got a notice of a room assignment. Because visiting hours end at 8:30pm, I hoofed it over to the hospital, assuming I was going into the ICU. I arrived to find an empty regular hospital room. At 8:20pm, I got the notice that she was in the surgical recovery area and they would notify me when she was ready for visitors. Oops. I waited until 8:40pm when Dr. Heller called me.

This bad-ass surgeon described Jenny’s surgery as “very, very, very difficult.” They removed her intestines from her body, disconnected them from the mass of scar tissue in which they were encased, and laid them out. They found all five fistulas within six inches of each other- a major injury- but one which left as much small intestine as could be hoped for- 6.5 feet. A healthy small intestine is 22 feet long and while what she has doesn’t sound like much, it’s probably enough to keep her off of IV nutrition. Hallelujah!

The Mayo surgical team even found a bit of large intestine which we had assumed was completely gone. They tried to repair the hole in Jenny’s rectum but could not access it. In her pelvis is the scar tissue about which her previous surgical team had said, “we’ve never seen anything like it.” Dr. Heller described this scar tissue as “a rock” that she could not move. They were able to get done what they had hoped to accomplish, but had to leave the rest ‘as is’.

As we finished our phone call, she told me that they were not sure if Jenny was going to ICU or to the regular room, and that I should go home and get some rest. Jenny didn’t make it to her room until after midnight.

I have to work while I am here as I have burned up all of my time off. At lunch on Thursday, March 2, I made my way to St. Mary’s Hospital, not knowing where Jenny would be or the condition she would be in. I remember how it was in 2016 with her initial injury, how it was when they tried to reverse the stoma in 2017, how it was in 2021 when they had to remove the mesh and attempt to repair the fistulas, and the two years of Hell since. I thought  she would be unconscious and on a respirator.

Instead, she looked like this:

I just about fell over.

She is not on a respirator or in ICU. In the days that followed her life saving surgery, she has worked through pain management with the anesthesiologists, and had a planned wound vac surgery (to swap it out) on Friday. On Saturday, March 4 she was cleared for hard candy and gum, sat up in a chair, and even walked the hallway to get weighed in.

And literally two minutes ago as I type this on March 5, 2023, she texted me to say that she is out of the final planned surgery on her abdomen. They closed her up. She’s in a massive amount of pain but she’s free.

By her own count, this is the 54th surgery she has received in her 53 years of life, the one that restores both her life and her dignity.

And it is a miracle.

If you are so moved, you can read more graphic and gruesome details while helping Jenny by donating to her GoFundMe.

-Copyright C.M. Mounts, March 2023

3 thoughts on “Caregiver Log: Miracle Workers

  1. nellmorningstar

    I am very happy to read this account, and to think of Jenny in such amazing shape so soon after the surgery! I willl continue to send Reiki and healing thoughts to both of you, but wonderful to hear the progress so far!


    1. Kathy Grossmann

      Christine, “Thank You” doesn’t begin to express our, (Jenny’s family’s), Love, Support, and Gratitude to you, Dr. Stephanie Heller, and the entire medical team at Mayo Clinic for being with Jenny, for the wonderful caregiving and the “miracle of life” with this “Hail Mary” last effort operation!
      While Jenny has endured the unthinkable pain, horrific surgeries, life-threatening complications with each hoapitalization, and unimaginable conditions she was sent home to live with her intenstines hanging out of that open wound, only Jenny would pin “as her volcano”! How Jenny has endures 54 surgeries in her 53 years is beyond comprehension, yet I have NEVER geard her complain, instead she has been grateful to God for the gift of life! She always finds the light and more often than not finding “humor” with the alien she has carried inside of her wound. She is and will always be my “bad was warrior” niece. We should all get on our knees and Thank God for our health ans mot bitch about our own aches and pains.
      I Thank God for the miracles he is bestowing upon Jenny, you, and Dr. Stephanie Heller so far and may he continue to do so during her long road to recovery.
      I am wellling up with “Tears of Joy and “Thanks” for the progress so far and the anticipation of a speedy recovery to the best outcome for Jenny anyone could hope for. Amen🙏✝️🙏✝️💜❤️💜❤️



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