It was a typical morning in the Pediatric ICU. I strolled in early with my giant mug of coffee and took report from my night-shift counterpart. I had been off for several days (one of the great perks of the hospital-shift life) so I was feeling refreshed and ready to tackle the day. I was not long in to my first round of patients checks and treatments when I heard the news: Prepare Bed 9 for ECMO.
If you have worked in a hospital setting at all, you are probably familiar with ECMO. Most people, I have found, have no idea what it is. The simplest way I can explain it to non-medical folks: it is long term heart and lung by-pass. A patient is placed on ECMO when their lungs and/or heart are too sick to do their job. A large and delicate network of machines work together to act as the patient's lungs or heart and lungs to allow those organs to rest for a couple of days up to a couple of weeks, if tolerated and needed. Simplified, blood is taken from the patient, run through an artificial lung, and placed back in to the patient. In this particular case, a sweet 17 month old toddler, Ryleigh, had contracted a double-whammy of viruses that proved to be too much for her lungs to withstand, even via life support on a ventilator.
One of the perks of my job as a Respiratory Therapist in a Children's Hospital is that I get to interact with a variety of patients. Every day is something new and different. ER, floor, PICU and NICU: each area of the hospital presents itself with variety and excitement. Often times, my case load is rather large, so I only get a few minutes with each of the patients and their families I see that shift. In some ways, this helps dissipate the sadness associated with my job. I don't have enough time with a patient to grow too attached. As I have grown in my career, I have found my calling in the PICU: Pediatric Intensive Care Unit. It is just big enough that I have adrenaline-filled, life-saving days and just small enough where I know each nurse and after just a couple of shifts, I know each family in the unit.
I have been on our ECMO team as a specialist since the team's inception several years ago. It was a way for me to grow my specialty and challenge myself to learn the intricacies of the process. We have worked several cases; I have seen miracles and tragedies. All the while, I have leaned on my faith to try to cope with the outcomes.
My world changed on the morning I met Ryleigh. I think every one that has ever worked in healthcare has those patients that change them. Even as the years pass, I remember each patient that I have lost. I remember each of the miracles as they beat the odds and surpassed what medicine thought they could achieve! I enjoy following many of my patients on their Facebook pages and staying in touch with families. It works out that just about every time I think that my time has come to quit... I just don't think I can take the sadness anymore... a dad will post a photo of his once paralyzed child taking their first steps...a grandmother sends me a message and thanks me for the comfort I provided during their whirlwind stay... a mom shares a video of a premie survivor saying words around her trach.... a patient comes to visit after they have had their trach removed and gives me a big hug! God sends those to me every time I need them! And, every time I say, "Ok, God. I know. I am right where you want me to be."
When a patient goes on ECMO, my job changes dramatically. I am no longer available to the other patients. I am one-on-one with that patient and her specialty pump. In fact, unless another specialist can relieve me, I cannot even leave the bedside of that patient. I become intimately familiar with the whoosh of her circuits, the color of her blood, and the flows and speeds at which her machine is pumping. I can pick up on even the smallest of changes, as we have been trained to do. My mind is focused on nothing else but that patient and the machine keeping her alive. I spend countess hours at her bedside, so I begin a deeper relationship with the patient, and in Ryleigh's case, her amazing parents, Paul and Bethany.
Paul and Bethany shared with me details of their story. Ryleigh is a little sister to Ella, who lives in Heaven. Ella was born at 24 weeks gestation, weighing just 15oz. Due to complications from severe pre-eclampsia, Bethany had to have an emergency c-section. Ella lived for six days and passed away on April 23, 2015. I remember being so overcome with emotion knowing how devastated they must have been. God blessed Paul and Bethany with a beautiful rainbow baby, Ryleigh.
Ryleigh was born at 31 weeks gestation on August 23, 2016, also due to severe pre-eclampsia. She spent nearly four months in the NICU. She had typical "premie lungs" and spent a lot of that time on respiratory support. She, also, had difficulties with feedings, and ultimately had a g-tube placed. Her mom was diligent about feeding her a well-balanced, age appropriate diet of breast-milk and blended foods. She was home and thriving and was a typical curious toddler! She had reached many milestones and had even started taking her first steps!
At sixteen months of age, Ryleigh was admitted to the hospital due to respiratory distress from a virus. This is not uncommon for NICU graduates, especially those that spent several months on ventilatory support. Their lungs are sensitive and more prone to the more severe symptoms of an infection. She spent several days on the floor of our hospital, but eventually her symptoms were worsening and she required critical care in the ICU. After several days of ventilatory support, her lungs were so sick from the viruses that they needed a break to heal. That was my first day meeting Ryleigh, the day of her 17th month birthday. I never got to see the spunky, fun, silly toddler. I only knew her as a very sick little girl.
Minutes ticked by. Hours passed. Shifts completed. Days trudged on. Ryleigh was not showing many signs of improvement. I was discouraged and I could only imagine what her parents were feeling. I prayed. I begged God..."Please, God, if you see it so, do not have these precious people go through another loss. They love you, Lord. We talk about you and your grace. Please protect Ryleigh and pull her through this storm." I remember just crying out to Him with each shift I would finish. Eventually, we would have a step forward, followed by two steps back. Things got worse before they got better. But, they got better. I remember the day we were taking her off of ECMO. She was still very sick, but her time with the machines had run out, and she was stable enough to come off of the support. I would go back and forth and fill in Bethany, Paul, and the other family members as they waited just outside. She successfully came off of ECMO and was tiptoeing toward recovery.
I was elated. I know her parents had to have been so thankful that big hurdle was achieved. I left the hospital so thankful and proud of what little Ryleigh and her medical team had accomplished. Over the long hours, days, and weeks, I had gotten to know Ryleigh through stories and photographs. I felt such a peace about her healing and was so eager to see her completely healthy. I had been working many long hours on her pump, so I was given the next few days off to recover and rest with my family.
It was a Saturday: February 24, 2018. I remember being at home and receiving the call. Just one day after turning 18 months old, Ryleigh had passed away. Her little body could no longer withstand what the virus had done to it. Her mom held her in her arms while she passed. It was that moment that I will never forget: I felt my heart literally break, and my view of the world was forever changed.
I have not been the same since Ryleigh's passing. While I know God puts us right where he needs us to be, I could not imagine the grief of another loss like Ryleigh. Eventually, God allowed me to leave my position. I changed my status to PRN and stepped down from the ECMO team. I knew that while my knowledge was valuable to the team, my heart and spirit could not withstand another loss like hers. I still work for the hospital, and I still consider it my mission field. For this season of my life, simply less of my time will be spent in the hospital.
I will forever remember Ryleigh. I pray that her memory lives on for all that knew her, inside the hospital and out. I ask that each of our readers take time to lift Paul and Bethany as they grieve an insurmountable amount of grief. I pray for their marriage. I pray for their relationships with others. I pray for their walk with their Savior. As a Christian, I ask that you please say a prayer for their hearts to lean on Him. As a Respiratory Therapist, I, also, ask that you pray for the healthcare workers that encounter these losses every day. While our patients may not be our family members, we hold each one so dear to our hearts. The mission field of a hospital is a delicate one. The calling to be there is, often, an emotional rollercoaster for those of us called there. As a mother, I am reminded on a regular basis to hold my children close and I challenge you to do the same. The way I see it, God is using my job as a way to further His kingdom through the lives of the families I interact with. I will continue to honor the love for Ryleigh and her family in each of my encounters.
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**This post was written with permission from Bethany. No HIPPA laws were violated.**