Wednesday, June 26, 2024

The Heart of a Warrior

Man, this recovery is tough stuff. 
It feels like for every step forward, he takes two steps back.
I know it's not actually like that.

In reality, it's probably more like 2 steps forward, 1 1/2 steps back. 

So we ARE making progress.

It's just slower than we'd like.

What I'm starting to gather is that they don't often transplant Fontans straight from Ecmo for a reason.

Because when you do, it forces you to deal with everything at once - the reasons the Fontan was failing, the deconditioning that happened to the entire body while on Ecmo, the after effect of Ecmo on the lungs and the kidneys, and the overall hit the body takes with transplant.

Any of these factors by themselves are tough, but manageable. 
Throw them all at the same person at once and you have an uphill battle.

In Bodie's case, they thought his body could handle it. 
He had just "walked in off the street," and had good muscle tone and reserves that someone who had been in heart failure for some time just wouldn't have. 

And they were right...for the most part.

But it's a lot of work for his body.

He's truly never been through anything this tough in his entire journey. 

And for a kid who's had 6 previous heart surgeries, that says A LOT. 

We're walking a fine balance of managing meds right now.

Because he has a pleural effusion and some possible atelectasis, his lungs need LESS fluid on board.

Because he's on these new antirejection meds that are processed through the kidneys, his kidneys less MORE fluid on board. 

His heart is a little stiff (fairly common with Fontans early on after transplant), which complicates things.

So we keep going up and down on his diuretics and his oxygen needs. 

And all of this has been compounded by the delirium, which leaves him too tired to do too much therapy wise.

And did I mention that, because he has a staph infection, they had to remove his picc line last week (bacteria tends to really like to hang out on foreign substances in the body). And his veins are pretty tired from all of the various lines and blood draw. So every blood draw requires multiple sticks. 

And he was so tired when they did the swallow study that ENT couldn't confirm whether or not either of his vocal cords are even working properly. So he's not allowed to eat or drink anything right now.

So, if you're following along, he's constantly having either a nasal canula or a full CPAP face mask on and off his face, he's not allowed to eat or drink, he's so weak that even just sitting up for 30 minutes exhausts him enough to need to take a nap, he's woken up all hours of the day and night to either beeping machines or someone wanting to do a breathing treatment on it, and he's essentially been turned into a human pin cushion.

So is it any surprise that he looks like this?

Yet, even in spite of all of that, there are GOOD signs.

They put in a picc line last night (granted, they put it in at 4am, it took 2 hours, he was completely unsedated, and really only did it because I refused to let them look for a peripheral iv when we knew they'd be putting a picc in later in the morning, but at least it's in now!), which means no more pokes for blood draws! Hallelujah!

His function continues to look good on echo, which means his heart seems to be doing well, even with the stiffness.

He's getting stronger every day. Not by a lot, but he is getting stronger. 2 days ago, he couldn't sit up for more than 2 minutes without insisting on lying back down. Today, he asked to go out on the CVICU balcony, and was able to sit for an hour, which was wonderful!

And we're seeing the delirium less and less, thank the Lord! He's definitely fatigued, but we can carry on conversations with him now. No more abject staring. He's starting to negotiate with me and the medical staff any chance he gets, which is fun.

And he's had a lot of bright spots, thankfully!

Our dear friend Gaby stopped by, with her trademark sweet smile and gifts for Bodie and I from our best friends at home. Bodie's best friends (we call them the "quad squad") sent him sweet cards and a framed pic of the 4 of them. 
He put the cards up and the picture is prominently displayed where he can see it. 

Dusk's Aunt Meri and Uncle Greg sent him a huge box of Star Wars stuff, which made his day. 
The highlight of the gift was a personal fan. Not sure Meri and Greg even know this, but Bodie is dying of heat all the time! We think it has something to do with still getting used to the good profusion of his new heart. Ice packs are his new best friend. So his eyes absolutely lit up at the fan! 
Grandma Jan sent him some hilarious taco socks and Gigi Nancy sent him an awesome new shirt. Thanks for keeping him so stylish in the ICU!

And we've gotten lots of treats sent our way. We're so very appreciative of them. But they've all been put away for now. Because Bodie can't eat or drink, I try very hard not to eat or drink in front of him. So eating consists of what I can do very quickly a couple times a day when I run down to the hospital cafeteria. But we're excited for the day when Bodie is cleared to eat and gets to enjoy the treats. 

Finally, Bodie's classmates sent him the most amazing box with fun things to pass the time, yummy treats (for later, of course) and the most incredible book with personal notes from each kid in the class. Talk about an incredible and meaningful gift! We are so grateful for the moms who coordinated that gift box!

For prayer requests tonight, we do have a few:

1. Please pray for Bodie's vocal cords to continue to improve.
He is trying hard to work on talking, and is making some sound (I think at least), but it's really hard for him. It's terribly frustrating for him to be trying to communicate and for us to ask him to repeat himself so that we can understand him. And he so desperately wants to be able to eat and drink - please, please pray his vocal cords heal really quickly so that he can eat and drink again!

2. Please pray for his body to continue to heal.
His recovery at this point really hinges on his lungs getting stronger. We need him sitting up, and standing up, and walking. It's defeating for him when he tries but tires so easily. Please pray that he sees the little gains, and that propels him forward.

3. Please pray for his sleep.
He is catnapping, but still not getting a full good night's sleep. PLEASE PRAY for good sleep, where his body can get into a deep sleep and he can get some REM. That will enable his body to heal, and have the reserves necessary to really hit his therapies hard and see improvements.

4. Pray for patience.
This is a marathon, not a sprint. But we're human, We want Bodie better yesterday. He will get there. It's just going to take time. He will be in the ICU at least through this Friday, when he has his first post transplant cardiac catheterization. At some point, he'll be moved to the step-down unit, where we'll continue his therapies, iv antibiotics and work on weaning the Dopamine he has been put on to help with the heart stiffness. Please pray for patience for Bodie, and for him to give his body grace as he continues to heal. He has been through so much, more than most people would be able to get through. 

5. Pray for Bodie to understand how amazing he is.
In the midst of slow recovery, it can be hard to see the forest for the trees. My greatest prayer for Bodie right now is that he would see what a miracle he is, that his body has been able to overcome heart failure, Ecmo and a heart transplant - all in the span of 3 weeks! If he just understood that, I think he would give himself so much more grace.

6. Pray for the donor's family.
Please, please continue to pray for the donor family. As we count the days since Bodie got his second chance at life (12 days!), his precious donor's family is counting the days of grief and shock since their lives changed forever, Please pray for peace and grace for them.



  1. Thank you for the update, I check for them regularly and get so excited to hear the progress. Praise the Lord! He is so good and so kind. I want to encourage you with the dramatic change I see in these photos today and what a difference since just over the weekend! It’s hard to see the progress when you’re in the midst of this 24/7, but boy can I see it in just these few days. Hang in there Bodie and mom, you’re doing great. Praying now for all your requests, mostly that sweet sleep! God bless you.

  2. We cant wait for the day you walk out of there Bodie! -MB

  3. Praying and praying. Sending love to you all. Heidi

  4. Sending love & prayers to Bodie. He has a long haul ahead but he is a miracle boy with a miraculous heart. He'll will get the kinks out! Hang in there