The last first is quickly approaching. This entire year, 2022, has been so dark. I try to turn the page and move into a new day, but it doesn’t consist of additional fulfillments. It might be new, but the word new doesn’t necessarily mean unchanged or unscathed. The next day carries the same weight as the day before. Sitting down to write a blog post is more challenging than it used to be. It’s the motivation I’m lacking. Recently we feared Avery’s upcoming anesthesia. Fortunately, she didn’t require anesthesia because the mass in her lung had decreased in size. This news was terrific, so why can’t I rejoice in it?
Her cardiologist started speaking of her POTTs shunt, and all I could do was picture Archer and how I wished we were speaking of his POTTS shunt. The shunt would have converted his circulatory system and allowed the right ventricle of his heart to drain excess blood. Consequently lowering the blood pressure in his lungs. When we first asked about the shunt when Archer was diagnosed, we were told, “we have to see him fail on infusions first.” We knew the risk of failing infusions and precisely what that entailed. We’ve been there and worked through it with Avery. I built up a tolerance for that type of talk because I knew we had already defeated it. It was a feasible option. In the end, Archer failed the worst failure imaginable.
I recently started sharing the happenings of his hospital stay and final anesthesia induction. This entire year we’ve been told not to share the precious facts for fear of the hospital building a case and ultimately winning a malpractice suit. Little did I know then that publicly hiding those facts and constantly waiting for lawyer communication was dragging us down. That is ALL we thought about. Every waking moment was waiting for the next “new” day because there might be progress on Archer’s case. Maybe we would find answers as to why he didn’t deserve the standard of care everyone does in the healthcare setting. Justification and validation are both relevant to intense and intimate feelings simultaneously. When we found out the medical expert who reviewed our case didn’t believe the hospital could have done anything differently, I was blown away. I was mad, disgusted, heartbroken, and suddenly questioning my knowledge. Why didn’t Archer deserve his vitals to be checked before he received versed, sevoflurane, and propofol? I cannot question my knowledge. I already know he deserved that, but why is that not obvious to everyone else, especially the professionals who worked on him?
I’m not disgusted that we are not pursuing medical malpractice yet, or possibly never for whatever reason working with a lawyer to degrade someone else feels so dirty. It makes me feel like a snake in the grass. That might be hard to understand, but it’s a constant battle of good and evil in my body. I was not too fond of it. It wasn’t until our most recent trip to Mayo with Avery last week that this realization occurred to me. For the past ten months, we have been grieving our beloved and one-of-a-kind Archer while trying to tear down barriers within the health system legally. HUGE undertaking! No wonder I see fog most of the day!
Now that I’ve been able to realign my hope for Archer’s legacy to a faithful path of good, I feel somewhat better about pursuing a change and hopefully holding people accountable while I do it. Motivation comes on quickly and leaves faster than it came. That’s why when I feel motivated, such as the other day when I released that news on Facebook, I excel faster than my brain, and usually, other brains can keep up because I know the motivation will not last. Obviously, I have to be careful not to share names, place blame on specific individuals, or name the hospital involved. I will try to share the event details as carefully as possible, but I get mad when I think of it.
With pure intentions, I will try my best to keep Archer’s legacy alive, change the assessments required before anesthesia and empower other parents to be their child’s voice regardless of obstacles. Everybody deserves the standard of care. Archer deserved the standard of care. Would it have changed the outcome? We will never know, but a standard of care should still be offered. I’m attaching some articles from the Academy of Pediatrics acknowledging anesthesia care. Keep in mind Archer was a complex anesthesia case, not a healthy child. One would think his complexity requires an enhanced assessment on top of the basic baseline vitals discussed in this article. To find my notes quickly, scroll through the highlighted sections. I’ve done my research..
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