Raelynn recently asked me why I have a zebra sticker on my laptop. In medical terminology, a zebra is the description of a very rare medical diagnosis or condition, where another explanation is more likely and more explainable. The zebra animal is considered unique with its different stripes, as unique as snowflakes and human fingerprints. Comparing the animal to the medical world tells us that a rare condition, often hidden from tests and scans, is unique. Finding this medical zebra diagnosis of a rare condition when all other explanations are more plausible is like finding your doppelganger in this massive world. Since our family was plagued with not only one diagnosis of pulmonary hypertension, but two diagnoses, we have shown the medical community that our family is a medical zebra. We are aware that we are rare. This highlights the importance for people to realize that one does not have to look sick on the outside to be truly sick on the inside. Historically, when we were asked how our kids are doing, our typical response was “Great.” At least great on the outside. They were stable, they tolerate their treatments, and we recognize signs of impending complications early enough to intervene. We have a plan b, c, and even d. There were never any loose ends because there was always a plan. Brandt and I could have never managed all our kid’s unique and unpredicted care without the help from our family and friends. We knew when to reach out and we did it.
Tuesday, day 4 of ECMO, brought another CT with even more terrible news. Archer’s brain had started herniating near the base, pushing on his brain stem. The herniation was not necessarily severe enough to warrant new medical intervention. We visited with the neurosurgeon this evening to discuss the potential need for a drain or a shunt. Ultimately, we quickly came to the decision that Archer would not be an appropriate candidate for any more procedures due to his complexities of ECMO, vent, EEG monitoring, chest tubes, multiple IV medications if I remember correctly, they were, tresprostinil, epinephrine, norepinephrine, propofol, midazolam, sodium bicarb, and milrinone. There was no certainty that he could tolerate another procedure. There was also no way that we were going to let our son risk passing away on an operating table rather than in the comfort of our arms. A drain wouldn’t have done much anyway considering the actual measure of intracranial pressure didn’t reveal dangerously high pressure. The swelling was not pushing against his skull likely due to it herniating down. The neurosurgeon brought a special tool from the neurology ICU that would evaluate his pupils for reactivity. While he used it, we held our breath. Silently he went from one eye to the next and back to the other. Regrettably, he told us what we already knew, “No changes, still unreactive.”
Our son remained lifeless in a bed. The bed was so much larger than him. That was necessary considering when the IV pole was too full of IV pumps they would use the bed as a resting place for an IV pump. They rotated him every few hours and I helped as much as they’d allow me to, but mostly I’d back out of the way, so they had all the necessary room. Our ECMO specialist this day pressed me on my need to eat and care for ourselves. He was very in tune with every minute of Archer’s care but he also cared about us parents. He would diligently remind me if I got too close to the ECMO tubing when I’d sit next to Archer, hold his hand, and read out loud to him.
Archer had started tube feeds through an NG tube on Sunday. His bowel sounds started to return shortly after that was started. We visited with the dietician on Tuesday so she could adequately calculate how much nutrition he needed. She also ensured he was on the correct formula. After visiting with her it dawned on me to keep the faith and continue to hope. I thought, if the dietician is here, surely, we are planning for a future for our son. Then I started to ponder what my son’s life was going to look like in his future. I asked myself questions like, how will they take him off ECMO, won’t that be dangerous? Will he gag when they try to pull his endotracheal tube out to discontinue his vent? Will he need a Bipap for a while after extubating to help keep his oxygen sats up? While the questions flowed through my head, I continued doing his range of motion on his ankles, knees, and wrists. I didn’t want his joints to get so stiff that eventually moving them would be painful for him. He hadn’t started losing any muscle mass by no means, but I could feel the stiffness starting in his ankles, it slowly went away with multiple stretches. Those simple things aren’t thought of by the nurses working with him. Likely because they are too busy with all the IV medications. It seemed as one IV med would need to be refilled; another would need to be flushed. Luckily, rotating pharmacies brought all his medications to his room, so the nurse was never without the med that needed to be started nor did they ever have to go searching for it.
We spoke to our kids Tuesday night. We didn’t reveal all the details, but we did discuss our concern for Archer. If I recall correctly this was also the night that the Naz held a prayer service for Archer. During the prayer service, we propped the laptop on Archer’s bed so he could hear everyone while we watched the live Facebook feed. Both of us were overwhelmed with the amount of prayer Archer received this night. A person doesn’t generally think of all their connections between loved ones regardless of blood relation or origin of friendships. We began to understand the impact of Archer’s struggle was not only ours to manage, but many others had willingly taken on this struggle to make it their own. People openly accepted us into their prayers without condemning anything about us. What a powerful feeling to be the center of others’ prayers. What a true gift this was. This service highlighted everything we were praying for and then some. Thank you to all who participated in the planning and to those who helped spread the word for the gathering. It meant so much to us and it will also be a cherished memory we will hold on to tightly.
To sum up today I would like you all to consider the medical zebra. Please don’t be so quick to pass judgment on others when, internally, their struggles are bigger than them. Bigger than anyone else will ever know because they are their struggles. They don’t have to look sick to be sick. Having walked so many steps on the Mayo hospital floors, opens our eyes and more importantly our hearts to everyone else’s struggles. Yes, we were in the midst of losing our son, holding on to hope that was no longer as bright as it was 1 week before, but we were also there together. I couldn’t imagine doing any part of this journey alone. We had each other to lean on. Our phones were never quiet. We had so much but it felt like we had so little. Encountering others who may be a medical zebra will be a moment of grace. I will extend a thank you to that medical zebra for contributing to all the unknowns in the medical field. This reminds me of Jesus on the cross. God gave his only son for all of us. I am not comparing Jesus on the cross to Archer’s life, but food for thought. We gave the medical field irreplaceable knowledge about pulmonary hypertension. Had they not experienced what it was like to care for our children, the next child’s treatment wouldn’t be impacted, but because there are medical zebras who are not obvious on the outside, the science behind the care is changing tremendously. It challenges the doctors to look deeper, seek another answer. Do not assume it is Asthma because the presentation is classic asthma. Remember the heart and lungs are connected. Don’t disregard that important piece of information and be quick to diagnose. Remember as parents to feel confident in your intuition. Don’t ignore your thought process just because you assume the professionals should know more. Seek out answers by asking questions. We had excellent care at our local hospital, and I will forever be thankful for that. Not only establishing care from infancy but also managing our zebra complexities. This care was great because they are great. They extended grace when I pushed further. Thank you.
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