Thank you to everyone for your advice. After I posted last night Mike and I had a talk and decided we are going to explore other options for Madeline's care. More specifically, we're going to seek second opinions through other hospitals while exploring our options at our current facility. We're going to set up a meeting with Maddie's pediatrician, Dr. Looove, to fill her in on what's been going on. She's been out of the office for the last few days...she didn't clear her vacation with me, but I'll forgive her this time. I'm consulting with a few people I trust who work for Dr. Lung's hospital to find out what's involved with the whole ethics thing. Believe me when I say my complaint has already been written, and now I'm just trying to figure out where to send it.
My mom was on vitals.com today (a new doctor-rating site) and discovered that we're not the only ones who thought Dr. Lung was crap. Out of a possible four stars, she has one. Her staff received a 0.7. Nice. I gave them zero stars. Bastards. I wish I could link to her but I promised Mike I wouldn't get sued in 2008.
Most of you asked what constitutes Dr. Lung being the best around. Well, I have done a lot of research on her and her credentials, her awards, her published papers, etc, and she's a genius. Literally one of the top pediatric pulmonologists in the country. ON PAPER. As the last month has shown (and a lot of you pointed out), her application of this knowledge is lacking. We didn't have the option to choose her - Maddie was an in-patient and you get who you get in that case. Now that she's out-patient, there are more options and we're going to take advantage.
Ideally, we'll be able to stay at our current facility as switching would be quite a nightmare. My insurance would probably laugh in my face - they are probably looking for ways to drop our multi-million dollar family every day!
Moving on. Maddie had her repeat sweat chloride study today. This time we were at a Cystic Fibrosis Foundation accredited facility, so the results should be more accurate. The technician told us that she'd reversed the last three results from Dr. Lung's facility. Hopefully Maddie will be the fourth in a row. We'll get the results tomorrow morning, so everyone think happy thoughts. If you subscribe to my site feed, you saw my mobile picture posts from the test. We were there longer than we were supposed to be, as Dr. Lung's office didn't send the correct paperwork - even after I confirmed with them yesterday afternoon it'd been sent. Luckily, this facility was great and they fixed the problem - it just took an extra hour and fifteen minutes.
I'm tired of these ranting, negative posts. Coming up, posts about carnivorous chickens, vomiting husbands, and blond 'fros. With pictures!
6.03.2008
Bridges to Cross, Bridges to Burn
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10 comments:
Wow. It's tough when someone who is supposedly soooo great on paper or in description just disappoints in real life.
I'm sending you all good thoughts while you wait to get her sweat test results back. And hopefully all your readers will get to cheer tomorrow!
And you can move on to talking less about CF and more about carnivorous chickens...? :]
I don't even know what to say...so why am I commenting? I guess just so you can feel the support. Good luck through all of this. I know there are lots of people pulling for Maddie (and you!).
Just wanted to say good luck!
Ok, what did I miss? I must have missed something. You did NOT, I assume, burn down Dr. Lung's office, right? RIGHT? :) Ok, good. But she needs a kick in the ass, right? RIGHT?
Just know that you are doing the best for Maddie. Always remember that.
Hugs.
You are very brave to take on the second opinion job. I admire you and your drive to do what is best for your beautiful girl. Bite it, Dr. Lung.
Switching hospitals was too overwhelming for us, even after being given an adult dose of steroid in PICU when she was 2 months old, losing my breastmilk, and getting a pressure sore that took up her entire cheek during her second cranial reconstruction. You just have to figure out how far you're willing to go, and I wasn't willing to find 13 new specialists. I have switched urologists to another in the same department, and they acted like that was some HUGE deal. Several people questioned me on the phone, and I had to get really good at saying we didn't feel our questions were being answered effectively.
Definitely ask around. That's how we've gotten a couple of our docs. Ask other docs for recommendations, if you have other specialists. Being great on paper doesn't translate well sometimes. Our hospital is a teaching hospital, so there's a lot of emphasis on letting the "kids" learn and the attendings spend too much time on their little projects.
The most important thing is to go with your gut. Dealing with the docs and as a parent in general, your gut will lead the way. Listen to it and trust yourself!!!
I've found the Good On Paper MD's are crap. I'm sorry the office sucks :)
Maddie is so bloody cute that I might die.
it's easy for me to give my opinion cause i'm not living it every day. you've done everything so well so far. you guys hang in there! i am sending positive energy your way.
I'm here, reading, commenting and getting angrier by the minute at Dr. Lung. Fuck her.
Fourth in a row, fourth in a row, fourth in a row!!
I couldn't stop laughing about the "not being sued in 2008" bit. *wipes tear from eye*
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