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.
Perspective
The best solution for ER visits is to have a letter from her POTS doctor instructing them to immediately administer IV fluids and any necessary blood work for MCAS, etc. Along with this, an ER ICE packet that you or she should have on her at all times. Extra copies in the car too in case of an accident. They should include a list of diagnoses, current meds, allergies, doctors with contact info, and emergency contacts.
Forgot to mention that the letter from the doctor should be signed and on his/her stationary.
Here is an example that you can adapt http://www.tmsforacure.org/documents/ER_Protocol.pdf
As a nurse, I understand the protocol. Sadly, as a patient and and a parent of 4 kids with several rare disorders, including POTS, your primary and your specialist can write all the letters and make all the phone calls they want and the ED doc doesn’t have to pay any attention to them if they see fit. Some will, but expect that it won’t make a difference. They will still look at the labs and say that you aren’t dehydrated thus don’t need fluids. Or won’t treat your acute pain from falling down the stairs because you are already on pain medications for your chronic pain (even though you are given very limited amounts and not enough to cover the acute injury). My daughter is in the hospital right now and still I am dancing with the doctors! It does help to keep your cool. BUT, you must stand up for your and your children’s rights as well! I don’t normally advocate for leaving Against Medical Advice, but I have had to take my daughter from a local hospital AMA to a farther away university hospital to get her proper treatment. File a complaint with the patient advocate or patient experience office. They will look at your chart and talk with all involved in your care…if you are informative to the advocate, the information will be passed on to that staff. If you have any peer reviewed research and documentation from your specialists, it can be successfully used here as education. Sadly, though, my children and I still don’t go to the ED unless, it is something that I can’t treat at home, or I am truly scared for our lives. Therefore, I truly understand why we medical Zebras hate doctors and hospitals!
One thing that has helped us is to understand the actual, medical description of my symptoms, and then…well, sadly, figure out laymen’s terms to discuss it with the doctor. Because sadly, if I USE the precise medical terms, a lot of doctors get defensive and think I’m trying to take over, but if I use imprecise laymen’s terms, then the doctors assume I’m too ignorant to know what I’m talking about.
It’s a catch 22 for the patient that REALLY needs to be addressed in medical school right now, honestly, but at the ER, my job is not to fix the system. It’s to get help, right?
For example, I have MCAS, so my body reacts like it’s allergic to things that aren’t necessarily even allergens. When I have had to ask a nurse or doctor not to use a certain substance with me, sometimes it’s things that are hypo-allergenic, or that would never cause a true allergic reaction. I know to tell them that my disorder can cause allergy-like reactions to things that are not allergens, or to environmental changes.
It acknowledges that I know what an allergic reaction actually is (and that it involves allergens), that this is NOT an allergic reaction, but that it has symptoms LIKE one. I have actually had most doctors and nurses respond positively to this (although they aren’t usually able to apply the knowledge for the rest of the substances and equipment and tests they want to do, so I still have to pay a lot of attention.).
This goes MUCH better than saying something like ‘I’m allergic to that gauze, so I can’t use it.’ Because the latter, they tend to assume I’m either crazy, or that I self-diagnosed something I thought was an allergy but was too ignorant to understand didn’t involve a protein.
When I’ve used more technical language…bizarrely, the doctors STILL think I’m ignorant, only this time, they think I’ve just read to much and that I think I understand more than I do. :-/
That middle ground, though, that seems to help me the most with medical staff and working with them.
In March my daughter who has Kearns Sayre got sick, I took her to the ER where after chest xray revealed pneumonia. She was admitted on iv antibiotics for 3 days the discharge on oral to complete at home. On the 3rd day after discharge date her condition worsened. I contacted her physician but he was on ward rounds and not available. After 3 hours and no return call I took her to a GP who had a little more in sight on her condition. She in turn contacted her physician as well and by then my daughter had so severe ataxia( something new) . Her physician told the GP to prescribe Rivitrol for the ataxia and send her home. I thank God to this day for the GP’s instinct not to send her home but to call in a pulmonologist her admitted her immediately. He ordered a chest ct and immediately a different iv antibiotic was started . Blood test revealed that her organs was shutting down. All results extremely elevated. She stayed in hospital for a week to complete the antibiotics and that saved her life. This was a very scary experience for me and a wake up call not to believe the doctor’s word unless I’m sure and can see that my daughter is ok.
My cardiologist has put me on digoxin for tachycardia and it has really worked. Maybe that only works for NCS, but life is a bit easier. Hydration is still important, but it might be worth asking your dr about.
Great article! The ER is not so easy on zebras.