Friday, February 26, 2016


You get bad news often enough, you prep for it. You're hardened. Start thinking: "Bring it on; I can handle anything."

But I can't.

I can't handle most things. In fact, I've been broken so many times, it is a wonder it is possible to break me any longer. Yet, here I am shattered into billions and quintillions of pieces.

I don't know if everything is wrong or nothing.

DQ wore a holter monitor last week for 48 hours. It wasn't the first time she's done this. Hopefully, it won't be the last.

The cardiologist called yesterday. Three years ago when DQ did this test, she had 261 PACs--premature artial contractions. Everyone has those. They are no big deal. But, last week, she had well over 10,000 PACs. I think the word was 10,800 or 10,600. What I KNOW I got right was that 3.8% of the time, DQ is having PACs. This is not necessarily a concerning number in and of itself. It is quite a change though.

Three years ago, DQ had no PVCs--premature ventricular contractions. Last week, she had 51. Again, not that big of a deal.

BUT, DQ had 6 times with 3 PACs in a row and a couple times with 2 PVCs in a row--cuplets. Those could be something. Those are a heartbeat away from dangerous tachycardia and other horrible things that could happen. That I can't type.

But, I think it all.

The cardiologist's first thought was DQ's digoxin dose may be off and she has toxic levels now. We are trying to get her blood tested ASAP to find out. Hopefully, that can be turned around quickly and get her back into a better rhythm. Hopefully, that leads us to an easy answer.

But what if it doesn't?

It hurts to think what could happen and I can't stop myself from thinking.

Tears have been flowing all day.

People walk into my office and  I try to wipe my face, but it's no use. I'm just a mom with a child in hospice, given bad news. And once again, we're in limbo land with no answers and so many scary questions.

This may be a blip, but it could be so much worse. And I'm broken.


  1. I've said before that I can't imagine what you're going through with your precious girl. Izzy has such a lust for life. I wish she could have a long and pain free one. I wish, as I know you do, that she can live long enough for medical science to find a way to help her. Cry as much as you need to. I hope there are people always around to put their arms around you and cry with you.


    1. Thank you, Bonnie. I think you did just put your arms around me from afar, so I guess the answer is as much of a yes as there can be while I'm still at work. Leaving now to wrap up that little girl in my arms. Thank you so much!


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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