Are you frustrated or afraid to go to the ER? I am on both accounts.
Friday evening ER visit with a brand new diagnosis…what could go wrong?
With a heart rate over 135 while sitting in a recliner, the cardiac nurse practitioner suggested a trip to the ER. With a recent POTS (postural orthostatic tachycardia syndrome) diagnosis, my daughter was struggling to walk to the bathroom but the elevated heart rate while sitting was new. And scary. Made scarier by the NP’s insistence on going to the ER immediately!
It was a pretty slow Friday evening in the ER. My daughter felt awful but she bravely took a seat to wait. A minute later, the receptionist tapped her on the shoulder. ‘Excuse me. You can’t drink that. No fluids, in case you need surgery.’
My inner ‘Mama Bear’ surfaced to educate and advocate about POTS. ‘But, water helps treat POTS, it’s the only treatment she is on. She can’t go without her water’. Not impressed (or any better educated) she insisted that she refrain from drinking while waiting.
Mama Bear is now not only scared but mad and frustrated! And dealing with a kiddo who is getting dehydrated, feeling worse and worse.
Oh, thank goodness we are finally put in a room and sick kiddo can lay down. Surely, the IV fluids will help her start feeling better.
Insert longgg wait… no IV fluids until we do blood work and testing. Sick kiddo asleep and getting more dehydrated by the minute.
Control over my Mama Bear is starting to get challenging – the fear, frustration and adrenaline in the ER aren’t helping. I know she needs to avoid lactated ringers (probable mitochondrial diagnosis) and will do better with d5 or d10 mixed with her saline (terrible reaction to fasting over 2 hours) but the information is not being well received in the ER.
In tears, knowing what might happen, what has happened to others that I know… it was a terrible experience. One that I hope never to repeat again.
The Real Problem wasn’t her 135 heart rate
Our goal Get her feeling better and make sure nothing else is going on
Cardiac Nurse Practitioner Rule out any acute major heart issues
ER receptionist Follow procedures and triage rules set up to run ER smoothly, efficiently
ER doctor Assess for acute issues that need immediate attention
Can you see where things went wrong even before we stepped foot into the ER?
Leaving the ER, sick kiddo felt worse than when we arrived so our #1 goal was not only not met but got worse!
The others involved viewed it as a success, with perhaps a bit of frustration with the Mama Bear who made life more challenging for them.
It’s Not You (personally), It’s the System
Looking back on this, I remember feeling as if the staff in the ER didn’t care about my daughter. Thinking that they were terribly ignorant and a menace to anyone with rare disease(s)…mumble, mumble, arghhh!
The ER is designed to handle accidents, trauma and acute issues such as heart attacks, cardiac arrest, asthma or COPD. Sick kiddo didn’t have acute symptoms that indicated any of those issues so it is clear now why she was not considered high priority.
The Nurse Practitioner that referred us to the ER, never explicitly told us ‘why’ it was important to go. I assumed it was to help address symptoms that were both scary and debilitating. She and ER assumed and had the similar goal of ruling out a critical heart issue, which falls within the expected role of the ER. Unfortunately, my goal of helping sick kiddo, who has multiple rare chronic illnesses, ‘feel better’ is not the mission of or a normal role for the ER.
Let’s start at the beginning
Where did it go wrong?
Even before we set foot in the ER, this visit was doomed and not likely to address my primary goal of symptom relief. Yes, it is an important goal, but not necessarily appropriate for the ER, certainly not without direct guidance from sick kiddo’s specialist.
Sick kiddo’s specialist didn’t (failed to) take full responsibility for the situation by not having a complete conversation with us about the issues and what to expect in the
Sick kiddo’s specialists didn’t provide an emergency protocol letter to help guide the ER in providing appropriate care.
I didn’t ask and work with the specialists to create an emergency plan, including the emergency protocol letter. ER doctors can’t possibly know about each and every rare disease treatment. It makes sense to get those who best know sick kiddo, to think through and write down specific recommendations on her emergency care.
What would have helped?
Better communication with the Nurse Practitioner may have uncovered her reason for sending sick kiddo to the ER, to rule out acute heart issues. Verbalizing this and allowing me to talk about my goal of improving her symptoms may have prevented this unfortunate ER visit and our unmet expectations.
Open, transparent communication with the ER staff on what they are doing and looking for may have helped this situation.
My ability to rein in the ‘Mama Bear’ and understand the bigger system may have made for a smoother experience.
Most importantly, working with the sick kiddo’s specialists ‘ahead of time’ to create a comprehensive emergency plan may have facilitated all of our goals being met. Having an emergency protocol letter that clearly states the importance and type of IV fluids to be run could have given the ER staff the information they needed to better help my daughter.