Friday, December 9, 2016

A plan to shed some light

Prayer warriors, it's time to suit up.
Bodie will be going in for a cardiac catheterization on Monday morning. 
Our call time is 5:15am, so it will be EARLY. 
He is first case. 
This cath will hopefully tell us what is going on with Bodie and what our path ahead is. 
To say we are overwhelmed and concerned is an overstatement. 
We covet your prayers.

We know he will be admitted for at least one night for observation, and possibly longer. There is a high likelihood that we will be starting Coumadin, a blood thinner. 
For my heart mom friends gasping because they know how much I loathe Coumadin, we may finally have to do it. Bodie's right ventricle has lots of crevices in it - not at all atypical of a right ventricle, and something all HLHSers have. When his heart function is good, it's not a problem - blood is moving so quickly it doesn't have time to settle into those crevices. However, right now, the bottom part of Bodie's heart is very stiff and not moving much at all, which means there is a much greater likelihood that the blood can sit, pool and form little clots. Not good. 
We will likely know more after the cath when they get a better look at that part of his heart. But the discussion is definitely on the table and if we do start him on Coumadin, we will have to remain inpatient until they get his levels where they want them to be. We are hopeful this will only be 3 days or so, but it is not unheard of for it to take longer. Please pray that we make the right decision regarding Coumadin, and that, if we start it, we get his levels where we want them quickly. 

So much to pray for.

A lot hinges on Monday. 

Dusk and I are still reeling and trying to process what exactly happened, why it happened, and what it means for Bodie's future. There have been a lot of tears shed over the past 48 hours, and I'm certain many more to come. But I had a lengthy discussion this afternoon with the doctor who will be performing the catheterization and it helped me put things into perspective a bit and I wanted to share it here.

She is also a heart failure doc, and has managed a lot of transplants, and has been at multiple institutions (including CHOP, which is one of the top institutions for managing pediatric heart defects in the world) so has seen a lot over the years. 

I don't want to misquote her and I'm sure I'm not remembering exactly what she said in the same words she used, but I walked away hearing something like this 
You know, Bodie only has half a heart to begin with, and it's declining in function. He is pacemaker dependent and has all these ahrythmias. Frankly, he is lucky his heart has made it this far. Yes, we will see if we can get his function to recover. But even if it does, I want you to really think differently about transplant. Because, our goal is NOT to get a limping Fontan to adulthood. Our goal is to get a GOOD Fontan to adulthood, who can chase his kids around. And if his Fontan isn't going to get him there, then we need to think about transplant. Not tomorrow, but it needs to be on the table. I want you to stop thinking about transplant as a dark scary monster chasing you down the street and think of it instead as a wonderful very viable option for Bodie. Yes, you know the risks with transplant and that you're trading one set of problems for another - but in this case, the trade-offs may well be worth it.

And I realized she was right. 
Bodie has never been a "good" Fontan - or a "good" Glenn or Norwood for that matter. He has always struggled. He has always had complications and never had the exercise tolerance even of his single ventricle peers. He is "good enough" and we work our asses off to make sure he lives as full a life as possible in spite of his "good enoughness" - but to say his heart has been good is a stretch. She said it was like that parable of a frog - if you put him straight into boiling water, he'll jump out - but if you put him in cool water and slowly boil it, then he'll stay there. And we're sort of like that frog - the water has slowly been heating up and we haven't noticed. And then the heart failure team walked in and was like "Oh, shit, that water is boiling!" And we're like "Wha??? It's not so bad." Probably an apt analogy of where we're at.

Sorry for the cursing, but in situations like this, it can't be helped. 

This is all to say that I'm trying to reframe what we'll be doing Monday. Don't misunderstand me. We are not rushing to list Bodie for transplant yet. We still think his heart is worth fighting for. But if transplant is the path God is calling us to, then we'll suit up for that as well. 

So Monday we'll be going in and seeing exactly where Bodie's at and what we can do to reduce his pressures and take some workload off of his heart to help him feel better and buy us time to figure out our transplant plan. And get him to a space where he is stable enough so that when it's time to be listed, he can be at home and living his life. Because if we have taught our son nothing it is this - no matter how crappy life may seem, how hard the twists and turns, there is always always JOY to be found.

Wednesday night (hours after our heart failure appointment), Bodie was a wish kid ambassador at the LA Make a Wish annual Gala. And he lived it up. This kid suited up, threw on a smile and forgot about the latest plot twist.
This kid just epitomizes JOY. 
I'm not sure how we got so lucky with that, but I'm so so grateful we did.

Please join him in suiting up and being in heavy prayer for Bodie on Monday. We know that God listens and that he answers prayer. Pray for Bodie's heart, for answers to be found, for there to be NO complications, for a clear path forward. 

And pray for Dusk, Sierra and I - let's just say our processing of all of this leaves a little to be desired. To give you a snapshot, Dusk and I are barely holding it together, I'm constantly on the verge of tears and fairly paralyzed with anxiety so can't get it together to clean the house (i.e. it looks like a bomb went off), Sierra is suddenly a snotty pre-teen who can't be bothered to speak in a civil tone of voice to anyone, and Bodie has to control EVERY.FREAKING.THING. 
So, in other words, its SUPER FUN at our house.  Wanna come visit?
So maybe some prayers we can all get a little more adept at handling the anxiety are in order.  
THANK YOU for your support!  



  1. Oh my, the word, "stress" won't even describe what you all are going through right now. Darling picture of Bodie and his Hollywood smile. He is precious. Prayers for him on Monday EARLY morning, as he goes through all the testing. Prayers for you all as you wait for his return. Waiting is very very hard. Whatever the future holds for him, prayers will be there. If he eventually goes on the heart transplant list, there will be so many prayers for them to find him just the right heart for his little body. If he doesn't have to go on the transplant list, the prayers will be there as well that they can do whatever is necessary to make his heart stronger. He is a fighter. You all are fighters and your belief in God will get you through all this. Bodie will have a wonderful future ahead.

  2. A big Prayer just for Bodie tonight. Be brave little man. xo

  3. Prayers for lil Bodie and prayers for your family. Believe me, I know what you guys are going through. My son goes to CHLA (Cardiology) as well. As you walk through the hospital, don't ever look down. Lift your head up and be strong. God bless.

  4. Miracles happen more frequently around Christmas time. I'm praying for a miracle and not just a short term one but a best case scenario, long term miracle.