Tuesday, April 4, 2017

The Squeaky Wheel

I hate having to be the squeaky wheel but I had no choice.

I have been extremely patient, even to a fault with the doctors in Utah.  It's been 7 weeks since we got the scan results on Shelbie's brain.  I didn't freak out, I waited to hear from our doctor but never heard.  After a couple of weeks, I sent an email.  A few days later, a message in MyChart.  The following week, I left a voicemail...twice.  I have made contact with them multiple times.

Finally, this morning, I pressed the issue.  I called and didn't just let them send me to some random nurse's voicemail.  I have been so anxious about this, I could hardly keep myself composed as I talked to the switchboard person.  I didn't want to get angry but I did make it clear that the way we have been handled has not been appropriate.  It's not fair to send someone a report stating that your child has a massive granuloma in their brain without some plan for follow up.  The girl was really good and promised that if I didn't get a response within 30 minutes, I was to call back.

Sure enough, I got a call back from our Doctor's nurse and she was rude!  I think I'm going to file a complaint.  She accused me of not being patient.  Really?  7 weeks of waiting isn't patient?  I was speechless and it's probably a good thing.

Finally, our doctor emailed me back.  She was apologetic and had assumed that this wasn't the first time I had heard about the mass in her brain!  Are you kidding me?  I am so disengaged with medicine these days.  I'm over their lack of communication.  She said she has a meeting planned for next week with a team of immunologists, neurologists and seizure specialists to discuss Shelbie's case.  That is good but it's more waiting.   Hopefully by then, I will have calmed down enough I can have a meaningful conversation and make a plan.


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