Bummer

Oh well, the symptoms persist even with the change in the LV lead voltage. Her diaphragm isn't pacing anymore (except when she inhales deeply, but it's not dangerous or anything) but she still has some chest pain, dizzy spells, and tingling in her legs and arms. I am out of guesses. I'm wondering if we should now see a neurologist? Maybe the lead is on the phrenic nerve causing all of this, maybe there was some nerve damage (obviously not life threatening since she is so well between spells) from the surgery or maybe it's something totally unrelated... though I highly doubt the last part.

I sent an email out to the doctor letting him know that symptoms continue. I suggested he present Skyler's case to some of his colleagues, including a neurologist. I've yet to hear back.

Sky is doing well though. I think most of you saw the Facebook video of her dancing. Even when she has these "episodes" she is OK. She just complains if the symptoms until they pass and off she goes back to playing. It's hard to figure out what's going on since symptoms are so intermittent. There was talk about admitting her to the hospital a while back but the cardiac floor is riddled with kids with RSV. The Dr's are worried she'd get it, too.

I am bummed out, but I knew this was going to happen. Hopefully they'll come up with a better plan now that they have seen the diaphragm being paced.

Sky is a mystery, no doubt. Her doctors really are working with me, though it doesn't always seem like it when I explain things in this blog. I have the absolute best of the best and I know they will figure this out. The one good thing is that Sky's heart is doing awesome, so let's not forget that.

I'll update once I know more, but that's about all there is for now. Thanks for all the well wishes!