This Post Will Be Used Against Me in a Court of Law

Those of you who've been reading for the last month know that I'm not really pleased with Maddie's pulmonologist. She is the best pediatric pulmonologist around, and that is why we stay with her. But today, oh man, I was thisclose to setting her office on fire.

We are under my health insurance. The main phone number in Madeline's file is my cell phone. The secondary number is my office line. They have no problem calling either of those numbers when they need to confirm an appointment, get a payment, etc. I am the main contact for everything. But so help me, they are AFRAID to call me with results. They ALWAYS call Mike, because he is the Good Cop, and I'm the Raging Mom Who Yells.

Today, Dr. Lung's nurse called Mike (grrr) with the results of Maddie's overnight oxygenation study. Nurse Lung said that the results came back normal. When Mike then asked if that meant we could lower the amount of oxygen Maddie received at night, Nurse Lung said, "No, Maddie is going to be on oxygen for a long time." Okay, but isn't the point to wean her off? "No, not that I'm aware."

Mike has so much patience (that's why he's still married to me), that he didn't immediately go ballistic. Instead, he changed his tactic and asked Nurse Lung if prolonged oxygen treatments would harm Maddie's vision. When we were in the NICU this was a BIG issue - too much oxygen can mess with retinas. Apparently Nurse Lung missed that day in school, because she answered Mike's question with, "What do you mean?" Gah! When he pressed her further, she told him that we'd probably want to make sure Maddie had regular eye appointments. That did not sit well with Mike. He said to Nurse Lung, "My wife is going to call you later, so you'd better have some answers for her." Nurse Lung stammered back, "Oh, well, I will be at the hospital so she'll have to leave a message for me."

What she didn't know was Mike was instant messaging me a transcript of their conversation in real time. I called the office so quickly Nurse Lung never could have imagined it would be me on the other line.

You should have heard the way Nurse Lung's voice fell when I identified myself. She went from chipper pediatric nurse to a sullen teenager. I told her that I knew she'd just spoken with my husband, but could she please explain everything to me? She said sure, and then...crickets. I literally said to her, "Speak. Explain." She finally told me everything she'd told Mike, so I said, "According to what we were told when the test was ordered, if the results were good her oxygen would be lowered. Is this still the case?" Nurse Lung stammered (STAMMERED!) that as far as she knew, this was not the case. "Well, what DO you know?" As she stammered some more, I lost what little cool I still possessed.

I told her that my biggest issue with Dr. Lung and everyone who works in her office is that they don't tell us the truth. They'll tell us oxygen will be ordered based on the results of a test, then I'll find out that it was ordered before the test was administered. They'll demand a transfer to their hospital for a procedure, then after our arrival they'll tell us Madeline is too small for it to be performed. Or they'll tell us that she is going to be weaned from the oxygen when really, that was never the plan. I said that it was ridiculous that the person calling to pass on important information had absolutely NO knowledge of anything pertinent, that it was unethical to lie to the parents of a patient, and that I had half a mind to report them to the ethics committee (a huge, huge deal). I think at that point, Nurse Lung had a stroke and crapped her pants. She said Dr. Lung would call me back right away.

Guess who never called me back?


cindy w said...

Seriously? You totally should report them. And start researching other pediatric pulmonologists while you're at it. There MUST be someone out there who's honest and competent.

Also, calling your husband when you're listed as the main contact is just chicken sh*t. That nurse should be ashamed of herself.

Tina said...

Heather, I am writing as a mother of preemie twins with medical needs (a little older than Maddie).
First of all hugs to you all...
Second, how do you define "best pulmonologist around"?
What exactly is it that makes her the best?
Her staff is crap and apparently she is overconfident and careless. Does best mean she knows a ton of stuff? What good is the knowledge when she is apparently not using it (see ordering a test for Maddie and Maddie being too small - shouldn't she KNOW that!?)
What are your criteria for defining her as the "best"? Has she taken GOOD care of Maddie? Has she been there for you, the parents? She could have have BEEN the best... and then it went to her head... and now she has money... and she doesn't care anymore (which is very obvious from your posts)
So how is she the best exactly?

I will share something. My boys' ped is the best. He has never been wrong about your run of the mill problems. He is calm and confident and he was my ped as a child and I turned out ok... but we switched.
Why? Because when John started showing signs of brain damage he poo pooe'd them. I had no support from him when my son turned out not to escape pregnancy and prematurity totally intact.
So we switched. I had had it with people looking at John and saying "Ah he is fine, he will grow out of it".

Do find a new doctor. The second best maybe... you are your child's advocate... find her someone who cares.
Hugs to you!

Bec said...

I agree with Tina. If that's the best pulmonologist around maybe you'd be better off with the second best, or even the third best. You're absolutely right, it is unethical to lie to have a test or transfer done. She and her staff should be reprimanded for that.

Mom24 said...

I have to echo the opinions about switching...at least maybe try to talk to the Dr. and explain that you're feeling FORCED to switch, even though you don't want to, blah, blah, blah. Why can't Dr's realize how much stress they add to already stressed parents with shit like this? Gah! Sorry it's so (unnecessarily) hard.

Debbie said...

I'm in agreement--start looking for the second best. We've dealt (a lot) with the "best" children's hospital in our state, really one of the only, but our experiences are enough to warrant a lawsuit. Or a few actually. But those are inpatient situations, when your doctor is not your choice. Our outpatient team is awesome, as we've chosen each of them. I also make it clear, without being bitchy, what my expectations are. In our case, we'll be dealing with a team of specialists for forever. You are the only advocate for your child. The simple fact that they called your husband with results and then implied they would not speak to you about the results speaks volumes.

Anonymous said...

I don't know that I would immediately switch doctors but I would get a second opinion. Think of this as collecting data upon which you will make a prudent decision in your baby's best interest.

Anonymous said...

bravo, tina!!!!

and i agree with cindy w. report them immediately.

her treatment of patients is disgusting. just think you will not only be an advocate for maddie, but the other parents of children who don't have the chutzpah you have.

go get her, heather!!

Danielle said...

Is there any way you would consider switching?

What is the definition of "best" anyway?

If second best is somone with a "lower" track record but who takes the time to talk to you, explain things, listen, research based on your concerns, takes what you think and feel seriously, willing to admit that they don't know but then busts their ass to find out...

I'd hit the exit ramp...

Good luck! So frustrating!

Short and Sweet said...

How absolutely arrogant and negligent of this so-called pediatric specialist and staff!!! They are there to support you and attend to your child's needs~~not to aggravate, alarm and cause added concern to an already stressful situation! Maybe a call to the ethics committee is in order to get them on track to a more professional and caring work ethic. Keep up the fight~~you are your child's best advocate. Also, can you ask your beloved pediatrician for a referral to another pediatric pulmonologist?
This makes me crazy(ier)!!!!!

Dana said...

That level of incompetence is seriously unforgiveable, Heather! It's a dog-eat-dog world when it comes to medicine in the US, so threaten them with taking your "business" elsewhere! If that's the best, that's really scary... You don't need that crap!

cbahm said...

I'll echo what others have said: Switch to second best. Your doc sounds like she's coasting on her reputation, has an incompetent staff, has overextended herself to the point where her office is just "processing" patients in a slapdash fashion, and/or has some other problem causing her to provide borderline unethical & sloppy care.

FYI: My youngest was a preemie (7 weeks early) and there was one battleax of a neonatal nurse who I came close to popping in the kisser. When pressed to retell my stories of her, nearly 11 years later, I still say her name in the same tone of voice that Seinfeld reserved for Newman. :o) And I don't normally hold a grudge!

Do what you know in your heart is right for your child, no matter who tells you this doc is best. She might be good when it comes to working with the flesh, but she doesn't seem to care for the patient as a person.

Hugs from a complete (but sympathetic) stranger!

Stefanie said...

You know what I think.