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.