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.