Tuesday, March 4, 2014

Watching and waiting...

So, we're here in the hospital, 36 hours and 3 doses of Flecanaide in. The good news is that he has had no negative reaction to speak of, thankfully! The neither-good-nor-bad-but-just-is news is that he also hasn't had a positive reaction. His Electrophysiologist tells us patients never react to the first or second dose. They "should" react to the 4th dose, but in his experience, most patients who are going to have a positive reaction to the Flecanaide, do so about an hour after the 3rd dose. So our money - and your prayers - need to be on tonight (he just had his 3rd dose) and tomorrow morning, when we get our 4th dose.

Please keep the prayers coming that this drug works for Bodie!

Besides that, we're hanging in there, staying VERY busy.

Minutes after getting to the floor. Just chillaxing, watching a movie, eating chicken nuggets.
He walked into the Acute Care Unit laughing and playing and has been pretty happy ever since. He is entertaining the nurses nonstop. ;-) 

We've been working on our letters
(Schoolwork doesn't stop just because we're in the hospital!)
and making "telescopes"... 
We've been "hiding" from the nurses
We've continued to feed our obsession with the vacuum tube system here, by playing on the kindness of nurses and sending things from one nurses' station to another.
And having some special time with some VERY special friends.

My fellow heart mommy, Dana, stopped by today and brought us lunch. Dana's sweet daughter Addie has ALCAPA (another CHD) and was in the CTICU for a long time with Bodie when he was a baby. Dana and I grew very close. Addie is doing incredibly well now, thankfully! Dana and I correspond on email often, but I think it's been a couple of years since I have seen her in person. Today was AMAZING - so much fun to sit with her!

We snapped a picture of the 3 of us before she headed into the CTICU to see favorite nurses and doctors. I LOVE this picture, especially since I'm fairly positive I have a picture somewhere of Dana with Addie and me with Bodie right before we were discharged when he was 5 months old. We've come so far.

While having a close friend of mine visit was a huge treat for me, Bodie got his own special treat - in the form of his BFF Ella, who was here for her pre-Fontan cath (which went great, by the way!). And, luckily for me, Ella's parents, Melissa & Brady, happen to be two of my favorite people on the planet - so, it was sort of a party, even in the hospital! We're so blessed to have been here the same time as them!

We got settled into our room while they were still in recovery. But Bodie was chomping at the bit to see Ella, so as soon as we got word that they were settled in, Bodie practically sprinted down the hallway to see her. This is what transpired when they saw each other.

Ella's expression just gets me. You can totally sense the love between these two. 
 And, once Ella was feeling better, we did a few trips back and forth between their rooms for the kiddos to play. They are SO.STINKING.CUTE together!
Ella went home today, and Bodie just ran to her room tonight, just to make sure she wasn't still there. Poor little dude. We'll definitely have to plan an out-of-the-hospital date for them in the near future!

I'd also like to send a shout-out to Dusk's amazing Aunt Karen, who came to town to help out with Sierra this week (and, from what I hear from Dusk, to help with a whole bunch of other stuff as well). Thank you SO MUCH Aunt Karen - what a blessing to know our sweet girl is taken care of! 

 That's it for now. Please keep those prayers coming for our sweet boy!


  1. Amy!!! I had the best time with you guys. Bodie is just the coolest little guy (well, not so little anymore!). I had so much fun and it was so "normal," I actually forgot we were in the hospital a couple of times-- it was just so nice to get to see you and catch up. And it is so true- we have come SO far. sending many, many prayers your way. so grateful to have you in my life. next time, I will bring Addie or you guys can come here. I bet Lila and Sierra would be fast friends! so many xxxxxxs and ooooooos.

  2. Still here Praying for all Positives and a healthy Bodie full of energy.
    A special little Prayer for Sister Sierra to have a fun time with Aunt Karen til you get home.