Friday, December 16, 2016

Sick little dude

It's hard to believe that blogpost was written just a few hours ago.
Things look pretty different now.
Bodie is sick.

We don't know exactly what is going on, but what we thought was just a response to erratic heart rates appears to be more. He's thrown up 3 times today, has a lot of nasal congestion and feels awful. He doesn't want to eat or drink anything, and he's now on IV fluids to help him stay hydrated. Hemodynamically, he is stable (his oxygen saturations and blood pressures are all good and he is well perfused) and that is good news. But whatever is going on with him is making him feel really rough. 
He just wants to sleep (he didn't get much sleep last night on account of the erratic heart rates keeping him up) and keeps saying he feels awful. 

His heartrates are less erratic now, but he is still in a constant state of EAT, and will be until the medication gets to the right level for him. It is hard to know whether his heart, in its current state, simply cannot tolerate the high rates it could before and that is causing his nausea - or whether this is all just a bug. Or perhaps some combo of the two. We would prefer this to be all bug related - because it's pretty scary to think of his heart being suddenly unable to handle rates it has been in off and on for years.

At the moment, it is hard not to feel like home, which previously felt so close, was snatched from our grasp today. For the last 3 days, home has been waved in front of us as likely happening "tomorrow." But when the heart failure doc left today, he actually said "Well, I'm not back in until Monday, but odds are, you'll still be here then. But hey, as long as he's getting better, that's the important thing,"

I know he is right. 
I know how long Bodie stays in the hospital isn't important, but that he makes it home eventually and feels better is the important thing. 
I know we are so so lucky that Bodie is doing as well as he is in spite of everything that happened this week.
I know this all to be true.

But I will be honest. 
It's so so hard being in the hospital with a 6 year old right before the holidays. 

I see his friends having Christmas parties and gift exchanges and I want that for him. I want him to be able to just be a kid excitedly anticipating Christmas, not be a kid stuck in the hospital with a half a heart that's very sick, weird arrhythmias and a virus on top of it.

And I want him to be able to see his sister. As a side note, any children's hospital that claims to provide "family centered care" has no business having a visitation policy that prohibits siblings from visiting during the cold and flu season. I can say with absolute certainty that this situation is made 100 times harder by that policy.

Please just pray.
Pray that we get his arrhythmia under control (ideally with tonight's dose of the medication!!!)
Pray that his RV panel shows a bug with a short life, that it passes quickly.
Pray that he feels MUCH MUCH better tomorrow. (We would love another Christmas miracle and have him be feeling 100% better by tomorrow!) 
Pray that his heart continues to recover.
Pray that we are home together as a family soon. 


  1. Oh, Amy!
    One of Dusk's many cousins, but have followed along your path you share so openly....and thankful for it, as I've prayed for Bodie whenever posted. I pray u get some good sleep tonight, he as well, and I concur about the frustration w hospital regulations abt no visitors in your area ☹️️. What a precious family the Lord has gifted you with, and I pray His sovereign WILL, over it ALL, and trust Him in it, and PEACE and JOY. (Hugs) dear sister,
    Rebecca Long

  2. Thankful you were still at hospital when this hit him. Oh your poor little guy. Know he is getting top care and he will soon be up and feeling well again. Even if you have to spend several more days in the hospital, he is in the best place for him right now. Home will be so wonderful when you all get to take him there. My wish for you is a very very very uplifting week and a wonderful holiday season. May 2017 bring wonderful things to your Bodie.

  3. It sure sounds like the old ugly winter flu.
    Can Bodie "Facetime" with his big sister? The Hospital should at least offer that.
    They should also have a window partition (like the jails)where they can interact with each other :)
    I know the sadness you feel, really me I do.
    The Prayer elves are going back to work again,
    this time praying for a new miracle!
    {keep smiling for Bodie}
    A hug of strength FOR ALL OF YOU!