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Monday, June 9, 2014

We Fired the Doctor

The concept of "firing" a doctor was foreign to me. Doctors are smart people - they know things. More things than me. Especially when it comes to specialists, you get referred and you go....that's kind of it. Except when it isn't.

Back when this whole CAH adventure started last fall, Ginny was referred to the only pediatric endocrinology practice in the area. Fortunately, it was relatively local, part of an impressive children's hospital network, and covered by our insurance. Really, I was grateful as heck. Throughout the past several months, however, I began to question the care and attention we were getting. As a side note, if you haven't experienced truly questioning your child's doctor let me tell you - it will make you feel like a crazy person. 

The practice we go to has several endocrinologists, each with their own interests, research, and specialties within the field. They see kids with all kinds of endocrine related diseases and disorders from growth issues to diabetes to adrenal insufficiency, like Ginny. We had been going about once a month for a check up on her growth and how her meds were doing. At the appointments, her doctor was very cordial, but awkward. It was never anything concerning until the last two months. Then came the red flags...

He mumbled a lot and never seemed to give me a straight answer. She would get blood drawn, but we'd never get results back. I'd call with a concern and he would never call me back, leaving the nurses to field my frustration and chase him down for an answer. I'd leave appointments without knowing her exact dosage. 

At first, I thought I was crazy. I was calling too much or my questions weren't serious enough for him to call back right away (or at all). Maybe I was going about this the wrong way. Maybe I wasn't asking the right questions at appointments. Then it got worse. 

It took 3 weeks to get a refill prescription for her meds. It took six weeks for him to agree to a script for Ginny's emergency injection after I found out that our EMS rigs don't carry it. I'm still waiting to hear back about her blood draw results from the middle of May. I found out that her twice a day dosing of meds is completely illogical when her medication only lasts 6-8 hours. Oh, don't worry, its not like it's important or anything.........

As if I didn't have enough to worry about, I was stressing over this so much it was making me lose sleep. Her disease can turn from nothing to something serious so fast and the thought of something happening because I wasn't getting a simple phone call back made me sick. 

I called and spoke with our nurse - a woman I ADORE. I expressed my concerns and she got quiet. She told me I wasn't crazy. She told me that I was the 5th parent to call that day with a similar concern about follow up and turn around time. I asked her what we could do. I mean, I'm just a parent - he's the doctor. 

Wait. Back up. What??

I'm a customer and he is a service provider. I don't mean to sound crass, but its true. When it comes down to it, I am a customer paying for a service and have hired him to provide that service. Just because he is an expert in this field doesn't mean I'm an idiot. I do my research, I talk to other CAH parents, I have my resources, and I am not happy. I want answers! I want return phone calls and test results and timely prescriptions! I needed to channel my mother and put a stop to this shit. 

The nurse tells me that she has been concerned about the care we've been receiving and recommended another doctor who has more of a focus on CAH and diseases like it. Not only that, but she also sees kids at a satellite office 25 minutes closer to our house. 

So here we are, rescheduled with a new doctor for August 8th. I'm incredibly excited to talk to this woman - who is apparently a no nonsense, straight shooter. I love it already. I have 100 questions for her. I want to talk about all these missing test results, I want to know what they mean, I want to know about alternative dosing schedules, I want to learn more about stress dosing. 

Never be afraid to question a doctor. I think I was afraid of being seen as "that crazy Mom," but the truth is I was right all along. I'm not crazy for researching or talking to other Moms. I'm not crazy for expecting the best for my kid. Don't ever feel crazy for going with your gut. It's the best tool we've got. 

1 comment:

  1. You've got to be your own advocate and your kids advocate! Always question and seek answers and don't let "the man" keep you from getting what you need to feel like your family is being taken care of :) You go Jen!