Wednesday, March 5, 2014

Holding patterns.

I detest holding patterns. I just don't got time for that. In the air or on the ground, they just And I can't stand them. 

I especially don't like them when they're referring to my spunky 4-year old boy.
But, that's where we find ourselves.

Last night and today didn't go exactly as hoped for. Bodie's Electrophysiologist was in our room 3 different times today, interrogating his pacemaker, reviewing the ekg print-outs and checking his rhythm. All told, his pacemaker was interrogated fully twice, and partially interrogated (to confirm rhythm) multiple other times, and he had 2 ekgs. It's all very very complicated (his EP said it's "EP 404" - you know, 4 levels above "EP 101"?), even for the gurus in this field. Bodie is just interesting (his EP's word - probably only because it's rude to call someone else's kid weird). But he definitely kept us on our toes today. In the picture above, he had a total of 19 stickers on (5 for his regular monitoring, 12 for the ekg and 2 for the pacemaker interrogation). We didn't want to take any off, since we knew they'd be continuing the monitoring throughout the day. 

Anyway, the long and short of it is that he's in EAT all the time. It's likely a different focus than before, but it's there and the Flecanaide isn't making it go away. Yet. But the Flecanaide is definitely having an effect. Unlike his previous EAT, he can be (and successfully was, twice today) paced out of this EAT. But, unfortunately, once he's out, he's bouncing right back into it within about 10 minutes or so. Talk about discouraging. I may have actually uttered the words "Rhythm issues suck monkey balls." Sorry folks, but they do. For reals.

The question is whether (1) the Flecanaide just isn't enough into his system yet to keep him out of the EAT, (2) the Flecanaide dose isn't high enough for him, or (3) the Flecanaide isn't the right drug for him.  We just aren't far enough into the Flecanaide to know the answer to any of those questions. So, we find ourselves in a holding pattern. My favorite place, right? 

Sigh. God is clearly teaching me patience again

So we wait. And we try to pace him out of the EAT again tomorrow morning (2 more Flecanaide doses in from this morning when we tried) and we see whether he can stay out of it. And we go from there. 

I hate waiting. Have I mentioned that?

But that's where we're at.

So, keep the prayers coming.

In the meantime, we'll keep hanging with our favorite peeps.

Nutritionist Emily 
Emily has been with us since birth and is pretty much the only reason the kid gained enough weight to avoid a g-tube. We so heart Emily!

and Nurse Michelle 
Today was Michelle's last day on CVAcute - she transitions tomorrow to the Emergency Department. We're SO sad. We have a long history with Michelle and absolutely adore her. She is always such a radiant happy face to greet us in CV Acute. What a tremendous loss to cardiology - but how lucky the ED is to get her! We're secretly (or maybe not so secretly?) hoping we don't see her again (in the hospital at least!)

and doing lots of games and crafting

(yeah, we might be getting a little stir crazy in these parts.)

Bodie has been charming the pants off of everyone in the unit. He has literally been sprinting down the halls - to get to the play room, the nurse's station (where he's probably stolen at least 50 stickers by now), etc. I have to say, his spunk is pretty awesome, especially for a cardiac kid.

Keep the prayers coming, for our rare little man - pray for clarity, answers and a solution!


  1. Praying for a Miracle tonight
    I'm pretty sure Bodie deserves one
    Bless that little face!

  2. For sure keeping all of you in my prayers Amy. Praying today is a better day with better results. {{{HUG}}}

  3. Praying!!!!

    I agree, waiting STINKS!!!!!!!!!!!!!