Tuesday, May 31, 2011

Learning a Lesson

Trust your mommy instinct!!  It'll save you $35 and an unnecessary trip to the cardiologist.  Okay, so maybe it won't save you exactly that.  But believe me, it'll save you some hassle.  This is something I've been really good at so far, but the closer we get to surgery the more I get paranoid.  Knowing my baby is in heart failure does something to your mommy instinct and still makes you question things.

Over the weekend I noticed that Kennedy was breathing a little heavier when she was playing and really active.  Of course, I know this is probably normal with her heart defect, but the paranoid side of me got nervous.  I called Saturday morning, hoping our cardiologist would just assure me she was fine.  I should have known I was doomed when I found out that it wasn't our doctor on call, but the one that I HATED from the NICU.  He has no bedside manner, and stood in front of us arguing with the sonographer over the echo.  I should have known this spelled trouble!  He called me back and told me to take her to the Emergency Department.  WHAT?!  He said that she should be seen right away since she's in distress.  Excuse me?  Did I say she was in distress?  I told him I was NOT taking her to the emergency room where we'd sit there for who knows how long to be exposed to who knows what kind of germs.  I emailed our doctor, and she agreed.  I got a call this morning that I had to take her in today.  I walked in and they told me they were going to do another echo.  I wouldn't be me if I didn't question things.  I pretty much told them they were crazy.  They didn't tell me they were doing an echo, I didn't bring enough milk to spend the whole afternoon there, and we're having an echo under sedation next week.  Did I mention we pay $300 out of pocket for each echo?  Our doctor was on hospital rounds so we had to see my BFF from the NICU and my weekend call.  He acted shocked that she wasn't blue or struggling to breathe and couldn't understand why I was concerned.  When I explained for the hundredth time that she's breathing heavy when she's active he looked at me like I had ten heads and said that was totally normal.  WHY couldn't he tell me that over the phone?

It's a good thing I'm not a parent who trusts everything a doctor says.  I would have wasted a day and a lot of money sitting in the ER just to be told what I suspected - that it's normal for her case.  Or I would have spent $300 on an unnecessary echo, had I listened to them today.  This will teach me to trust my mommy instinct.  I knew she was okay, and not in any distress.  But the whole "heart failure" diagnosis can really mess with a person. 

"I don't want my Lasix.  I will not open my mouth, and don't think about taking my ball away!!!"


  1. It is a hard lesson to learn, I've hit that particular stumbling block more than once. It is doubly exciting when different doctors tell you different things, especially when the ED docs try and treat cardiac symptoms and it isn't their specialty. Good job on advocating!

    It always made me kind of crazy when they (cardiology) treated respirations in the 70s - 90s like no big deal and everyone else in the medical community panicked.

  2. Unfortunately, any call to a doctor (especially on the weekend) will probably result in a trip to the ER because of the fear of a lawsuit on the off-chance (no matter how slim) that something could be wrong. If they say all is ok and it is not, they could be sued. Most docs don't want to take that risk and send everyone to the ER just in case. Like you said, sometimes you have to rely on your intuition, but in the end, it is about the safety and well-being of your child.