Monday, February 14, 2011

Roller Coaster Rides

When the Dancing Queen was diagnosed, I was warned by my OB that it would be a roller coaster.  She was right.  We've been on a roller coaster now for over 3 years and I'm ready to get off.  It never gets easier and I think it is getting harder.

I had to bring the Dancing Queen to the ER at 4:00 a.m. today in respiratory distress. Everything was going fairly smooth as far as ER visits go.  We were waiting to get admitted and she went into crisis.  I got her the help she needed, but on the inside, I was breaking into a million pieces.  I couldn't get the ER staff to understand or care (maybe it was both).  I was completely afraid I was going to lose her because they weren't there.  I have never been that afraid before and she has been much sicker.  Today though, the medical staff just didn't get it.  Incompetence was my fear.  I didn't let it paralyze me though and despite fighting against me, they did what I asked, while rolling their eyes.  It worked.  Yet, I didn't feel vindicated, just angry because we had to fight to get them to take care of her.  People don't know about congenital heart defects, even the medical community.  The ER staff assumed it was okay that the Dancing Queen had dark blue hands and feet and lips because she was born with tetralogy of fallot.  They didn't care that she was noticeably in distress.  Why???  Because they don't understand!!!!!

Today is Congenital Heart Defect Awareness Day!  CHDs affect one out of every hundred babies.  It is completely unacceptable when the medical community does not understand these defects, especially a peds ER.  More has to be done!

Off my soapbox now.  My baby needs me.


  1. I am sorry you had to go through this, but really admire your strength. I am going to be posting a little blurb about the Heart Shaped Dinner that I made for me and the girls tonight. While it was an obvious Valentine's theme dinner, you and the Dancing Queen were on my mind. In the short time I have been reading about your family, CHDs have come to the forefront of my awareness and I hope and pray that society and specifically, the medical community will find their way to better understanding and care of these defects.

  2. Thank you very much. I appreciate it. I hope your heart shaped dinner was lots of fun with your girls!


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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