Friday, December 16, 2016

Big Picture: GOOD.

The last few days have been such a roller coaster.

The good has been good. Very very good. As in, major answers to big picture prayers good.

1. His BNP (measure of heart failure) has dropped by a LOT! 2 weeks ago, his BNP was 762 (for single ventricles, you really want to be under 300, but most importantly, you want it not to be trending upwards over time). Last week, it was over 900. Yesterday morning, it was 495!!! This is an unbelievable answer to prayer and a very good indication that the changes we made this week made a difference.

2. His function looked BETTER on echo yesterday! Not a lot, not even by much, but it did look a little bit better - and definitely did not look worse! We did not expect to see an improvement so quickly, so this was an absolute answer to prayer. Time will tell whether we will see further improvement, but we are definitely hopeful at this point.

These are both more than GOOD. They are fantastic and are answers to prayer.

3. We also had a few special visits.
He got to love on a hospital therapy dog.
Our Pastor and the former Principal of the kids' school stopped by. It was so lovely for Bodie to get to spend some time with these guys and they totally lifted Bodie's spirits.
And my parents swung through on their way through town - it was so fun to get to see them for a bit!
We also had a quick fly by visit from one of Bodie's Camp Taylor friends, Dante, who was here for pre-op for surgery with Dr. Starnes. I didn't get a picture - Bodie was in isolation and we didn't want Dante taking whatever virus Bodie had into the OR with him. So Bodie waved from his bed. ;-) 

Thank you to all of who you have offered to visit. Unfortunately, because it's cold and flu season, CHLA will only allow 4 visitors for the duration of our admission. We have to give them the list of those 4 people and no one else is allowed to come. As you can see from the above pictures, we've already hit that limit. 

(Really, this should just be called the "inconvenient" because it's not so much bad as annoying and frustrating and delaying our discharge.)

Things were looking so good that we were on track for discharge yesterday. We were so excited, as it meant Bodie would be out in time for his classroom Christmas party this morning and his karate belt test tonight. But yesterday afternoon, he started having all sorts of arythmias and not feeling well. The arythmias are not dangerous, per se - but they sure as heck don't make his body feel well. And they mean he needs to be back on Flecanide, his anti-arythmic drug that we stopped on Tuesday. So we added it back yesterday afternoon. But it hasn't fully gotten into his system yet.

So, we remain here under observation until his levels get to where they can protect him appropriately. We had thought we'd be discharged today, but they just decided to go up on his Flecanide, so we'll be here at least another night.

So yes, that's 2 days in a row we were geared up for discharge only to find out it wasn't happening. That's a bit rough on a 6-year old. Heck, it's rough on his 40 year old mom. 
We miss our beds. 
We miss Dusk and Sierra. CHLA does not allow any children, including siblings, to visit during cold and flu season - so Sierra hasn't been up here to visit at all. 
We miss being able to be out in the hustle and bustle of the holidays. 
So many reasons we want to be home. And I know we will get there in good time. 
But in the meantime, Bodie doesn't feel well. He threw up this morning. I think it's because his heartrate is really erratic (as in 80bpm one minute and 155bpm the next - that's enough to make anyone sick). It's getting into a tighter range now as the Flecanide is starting to get into his system, but we still need more improvement for it to translate to Bodie really feeling better.

Today, we covet your prayers for the following:
1. Please pray that the Flecanide works quickly, so that his heartrate comes down to a range that is acceptable for him to come home on - and that it makes him FEEL BETTER.

2. Please pray that his heart function continues to improve. Whether his heart function will rebound is still VERY much an open question and probably the thing we need prayers for the most going forward.

3. Please pray for our spirits to improve. We're tired of being here. Our initial plan had been for Dusk and I to switch on Wednesday night, so I only brought clothes for 2 days, thinking I would switch clothes out when I went home. Since I am the parent more knowledgeable about Bodie's rhythms and we're unexpectedly battling new rythym issues, we thought it made more sense for me to stay here bedside instead. But that means I haven't been home since Monday and that Bodie and I are recycling clothes at this point. We have built every Lego set we brought (and an additional one I bought yesterday).
It's getting old. 
Like I said, BIG PICTURE is GOOD. Bodie is improving on all fronts. So remaining here is just an inconvenience. But sometimes inconveniences do a lot to dampen spirits. 
Please pray for some rebounding of spirits over here.

1 comment:

  1. Glad to hear the good news, I've been thinking about Bodie a lot lately and I hope he keeps improving. He's strong like his mom.
    Love Zoe's daddy