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Save our Children’s Mercy PICU Physicians

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Dear Paul D. Kempinski, MS, FACHE - President and Chief Executive Officer Children’s Mercy Hospital,

I am writing with the goal that Children’s Mercy Hospital recognizes the value of their AAKC PICU Intensivists and Anesthesiologist and reconsiders the decision to end Children Mercy’s 40 year relationship with this phenomenal team.

My daughter Zei spent 4,556 hours on VV ECMO. This PICU team was our lifeline. I have countless stories of how these Intensivists and Anesthesiologists supported us through those 190 days of ECMO life support, but today I’d like to tell you about May 15th, 2018, and why I am certain we would not have made it through that night without the AAKC PICU physicians.

Please remember that because of your Children’s Mercy PICU team, Zei was the first at your hospital to eat, to sit up in bed, and finally to WALK while on VV ECMO life support. Her lungs slowly regained breathing capacity, and after 6 months on the highest form of life support, Zei underwent a tracheotomy and proved her lungs were finally strong enough to effectively exchange air through a ventilator instead of ECMO.

On an early Tuesday morning, May 15th, 2018, Zei was decannulated from VV ECMO. By 5 pm that evening, she was actively dying in her hospital bed. No one could make sense of her sudden and rapid decline. We had done everything right. Zei had been “clamped off” ECMO support for two days prior to the actual removal of her life-saving Avalon cannula and had consistently maintained life on the ventilator alone. But that evening her face faded into a shade of bluish grey...she wouldn’t wake, eyes glassed over and halfway closed, her gaze no longer meeting mine. Zei was agonal breathing despite ventilator support when I crawled into bed with her, smelled the tea tree scent of her hair, and told her it was ok.

Outside of her room, the team huddled in collaboration. Zei was obviously too fragile to transport to CT, but what was the alternative...and after such a fight for home.

Dr. Jay Rilinger, who often brought jovial relief on our toughest days, approached me with obvious concern and said “We have theories as to what is happening but need a CT scan to confirm and treat. I don’t know if Zei can survive the transport to CT, but we will try if you are in agreement.”

I nodded my head and asked if I could please accompany her. Within seemingly seconds, Intensivist Dr. Jay Rilinger and Anesthesiologist Dr. Paul Sheeran were rallying their team. We were accompanied by a second anesthesiologist, a pharmacist, and Zei’s nursing staff. Dr. Jenna Miller arrived early for her night shift, and they carefully transferred Zei from her bed onto the cold silver CT table. I held Zei’s swollen arms above her head as her body was eased into the CT scanner.

It was then, I felt for the first time, my daughter Zei dying while in my grasp. Her heart stopped as I heard Paul command she be taken out of the CT scanner. I know not the dose of epinephrine given nor how they brought her back to me, but I am, without a doubt, and with 100% certainty that no other team would have had the foresight of preparation nor the synchronization of team work to provide Zei with a second chance in achieving her goal of home.

Her heartbeat resumed.

Yet all I could consider on that elevator ride back up to the ICU was that I should have done better. I am a hospice nurse...and if Zei was going to die in a hospital, it should at least be in my in that tightly packed elevator, my face so close to Zei’s, her face grey in the shadows of death, I made a decision and softly whispered “no more”.

I remember the silence and meeting each of her physician’s eyes as they solemnly gazed back in agreement. We re-entered the PICU where warriors were openly shedding tears. Everyone had been waiting.

But before we reached our room, Dr. Jenna Miller’s phone rang. It was radiology stating Zei’s CT revealed her lungs had been showered in microemboli. Tiny clots had dislodged from her life-saving ECMO cannula and were now suffocating her lungs.

I felt our pace quicken as Jenna stared me in the eye and said “we can fix this”. Because of my trust in Zei’s team, I immediately responded “ok”.

Jenna swiftly consulted with Paul and Jay and the pharmacist at our side as they started TPA to dissolve the clots. Within 3 hours Zei’s color returned. She was tired but awoke. The next day Zei suffered an ischemic stroke, but ultimately recovered, relearned to walk, and weaned down to ventilator settings low enough to allow her that ultimate goal. Home. Zei died 8 months later, but this time in her own bed, and in my arms.

As a nurse employed though a non-profit hospice for over 12 years, I understand dying, and I also understand the business side of healthcare. I know healthcare organizations are financially suffering amidst this pandemic and realize many chief executives are taking pay cuts for the honor of a mission.

I believe this is happening at Children’s Mercy Hospital as well. And Children’s Mercy’s stated mission is to provide the highest level of medical care, technology, services, equipment and facilities in promoting the health and well-being of children in the region, from birth through adolescence.

The highest level of medical care. This is the gift we’ve already been given.

While literally living within the walls of Children’s Mercy PICU for 457 consecutive days, I witnessed as both a nurse and as a mom this mission come to life through your spectacular AAKC Intensivists and Anesthesiologists. Your PICU team is the backbone of your organization. They continually return to a place of no reference point, no clear path from one child to the next, yet are whole heartedly dedicated in doing what is best for each individual situation. That was part of our miracle. They met Zei as an individual with all her stubbornness and quirks and so much love.

These Intensivists and Anesthesiologist let go of ego, consult with one another, and bring tremendous experience to your hospital.

And if the bottom line is financial stability, please consider these facts:

40 years ago, the AAKC physician group began developing what we now know as the Children’s Mercy PICU. Your growth and expansion is directly related to their performance and innovation. A comparative study in PubMed found physicians with the least experience have higher cost profiles than do their experienced peers [doi: 10.1377/hlthaff.2011.0252]. In fact, physicians with under 10 years experience showed a dramatic 13.2 percent higher overall cost compared to physicians with 40 years experience.

Yet the job posting by Children’s Mercy for Pediatric Anesthesiologists and for Pediatric Critical Care Physicians clearly states “We are seeking candidates early in their career...” [].

Zei would not have ambulated on ECMO, would not have survived the evening I wrote of, would not have made it home if her care would have been directed through a physician team “early in their career.”

Zei’s story beautifully shared through Inside Pediatrics would not exist without the innovative approach of your PICU team.

I plead for you to reconsider the devastating financial effects of losing your current PICU team while also considering the terror rising within the patients and families who rely desperately on our beloved PICU physicians’ and anesthesiologists’ experience, expertise, and compassion as they effectively manage the region’s most medically complex children.

I hope all avenues have been explored before ending a 40 year relationship with these physicians and anesthesiologists. Their absence will leave Children’s Mercy Hospital with a horrible disadvantage. I can’t help but wonder how a discussion of future goals and current concerns lead to such a drastic decision. These physicians are innovators. I am shocked as a team you were all unable to achieve a better solution. Do not dismiss their voice. I hold hope for continued collaboration and employment for each of these physicians.

I will continue to share my experiences with you as the one shared in this letter cannot possibly alone honor all of the ways in which the PICU team changed our lives. They no doubt inadvertently saved my life as well, preserving my sanity through book clubs and unicorn affirmation cards...through their openness and ability to listen. Your PICU team is the reason I returned to hospice work even after losing my daughter. I am still working for the same non-profit I spoke of in the beginning of this letter.

And that night, when Zei’s heart stopped beating, her physicians triaged and treated Zei’s needs but then also walked to the next room, then to the next room, then to the next room, and treated each patient and family with the same attention and compassion they gave us in that moment of crisis.

And while Zei was the only family I had with me that night, I never felt alone. Dr. Miller returned from rounds and sat outside our room until sunrise.

I am positive that despite the uncertainties they now face, these physicians continue to show up with the same level of commitment and expertise. I have no doubt as I write that they are still walking room to room to room, meeting the kiddos at eye level, and sitting next to the parents as needed.

In a children’s hospital, your people are the key factors that ultimately separate you from your competition. If you have the top people, performing at their peak, then success will follow. It has. It will. #lovewill

I reach out to you with the acknowledgment and respect that this decision was a difficult one, and that I know not all the variables. But I am also reaching out with the acknowledgment you have not been given the opportunity to know all of mine. Of ours. Of all the variables which must be considered when calculating such a drastic move. Thank you for your consideration.

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