Sunday, June 9, 2024

The Calm Before the Storm

Bodie had a relatively uneventful day today, which was exactly what we wanted - for his body and heart to rest!
(We're not really happy, don't worry - just trying to make the best of the situation we currently find ourselves in - as Sierra quipped "This is actually a nice family bonding experience - well, except for Bodie!")

They removed the muscle relaxant and let him wake up a little. Although he hasn't been too awake for us, he was awake enough to communicate with the nurses and let them know what he needed, which has been nice.  All scans so far (the CT scan and other organ scans) look good, which has been so reassuring. And they took the continuous eeg monitoring off. 

We got 2 big answers to prayer today - 

1. Antibodies. 
After being highly sensitized for years, his antibodies are LOW! (Highly sensitized means that he had a lot of antibodies in his blood from all of his previous procedures and blood transfusions. And that means, in addition to a donor heart needing to match his blood type (he is A+), it also can't have any of the things Bodie has developed antibodies to, severely limiting his potential donor pool.) Occasionally, kiddos are highly sensitized and it gets better over the years, the further they get out from transfusions. But since Bodie was still highly sensitized as recently as 2 years ago, the general thought was that he would always be highly sensitized and we'd need to do aggressive therapies to bring his antibodies down before listing. However, his blood tests early this week showed that he's no longer highly sensitized!!!!)

2. EAT. 
He came out of EAT ON HIS OWN this afternoon! When we got here, he had likely been in EAT consistently for about a week and a half, and it hadn't stopped since we got here, even on ECMO. So for him to finally come out, on his own, is amazing! I don't think it'll change the trajectory of his treatment (his heart is still not likely to recover on its own), but hopefully this means his body will be much happier and in better shape for whatever ventricular device is chosen. And hopefully we can avoid an ablation because of it. We'll see. But in any case, his body is SO MUCH happier (which it always is out of EAT). Since he's been out of EAT, they've been able to come down on his Epi and Morphine drips, and his pressures have looked better. Please pray that he continues to remain out of EAT, so his heart can really rest. 

After talking to his team about the plan for the week ahead, we agreed today was a good day for Dusk, Sierra and I to spend some time out of the hospital. Next week is likely to be very busy and Bodie is still sleeping for now. So we took their advice and went into San Francisco to do some touristy stuff. It felt a little hollow without Bodie, but we did our best, wandering amongst the crowds and enjoying the nice weather...
Sea lion watching (did I mention it was super windy?)
Making the perfect Build A Bear to give to Bodie when he wakes up.

It was refreshing and filled us up for the week ahead, which, God willing, will be very busy for both Bodie and us. 

As we head into this week, we covet your continued prayers. We know they are the reason our son is still here with us, and the emails, texts and posts coming in letting me know your families, your churches, your relatives and coworkers are all praying for Bodie means the absolute world to us. Please please don't stop! 

1. For Bodie's continued safety on ECMO.
Bodie will remain on ECMO until next steps are solidified, likely the middle of this week. That means more time on a lifesaving, but ultimately very risky device. Please continue to pray for safety for all of his organs, especially his heart and his brain. They have a handful of clots they're watching closely - please please pray that clots either dissipate or remain exactly where they are and do not move into the tubing closest to his body.  

2. That transplant evaluations go well. 
Tomorrow we finish all necessary transplant evaluations, both of Bodie and our family. Please pray that all goes smoothly and they determine that Bodie is a good candidate. 

3. For wisdom in selecting a Ventricular Assist Device.
God willing, they will determine Bodie is a good transplant candidate and then they'll need to determine the right Ventricular Assist Device to bridge him to transplant. VAD's are wonderful in that they can allow someone whose heart is otherwise too weak the ability to wait for transplant, giving them time to grow and remain healthy while waiting. But none of them come without risk so it needs to be a very thorough and well thought out decision. The device chosen will generally be dependent on how long they think he's likely to wait given his size, age and other factors (some devices are better for shorter term, like weeks, and others are better for months to a year or longer). No one has a crystal ball, but they'll want to select a device that has the least risk given his likely wait time. 

3. For Bodie's safety as he bridges from ECMO to a Ventricular Assist Device.
    All of the devices in consideration have risks, particularly of stroke, but are the only choice when Bodie's own heart won't be able to sustain him until he gets a new heart. Please pray that the transition from ECMO to the device goes smoothly, with no hiccups or risks to Bodie's heart, brain or other organs. Additionally, pray for a smooth recovery so that he is up and mobile again as soon as possible. We miss our active silly boy terribly and cannot wait for him to be up and moving again!

Finally, I will leave you with this, which I saw on a friend's Instagram account today. I think it perfectly encapsulates where we're at and the approach we're trying to take right now.



  1. Praying for Bodie!

  2. I love your whole family and am sending prayers along with my whole family. I even went to neighbors who brought your house and begged them to pray for Bodie & all of you. Stay strong. The Nakayama's love you

  3. Miss you all and wish I was close by to bring you a thing of Reese’s or something like I did back in the day. Love you all, Chels

  4. Thank you for the updates, Aims! We are reading each one and will continue to pray. Putting in prayer requests with every congregation we visit this summer during sabbatical! Love you all!!!

  5. Praying so much for your boy and you guys. Sending hugs and love.

  6. Continuing to pray, my friend. For my Bodie, and all do you, including his medical team 🙏

  7. Continued prayers!!❤️

  8. I feel the pain even through the smiles , I admire and appreciate you sharing your journey , you are an example of how to go through a storm , and imperfectly doing your best , with prayers , God at your side . Will continue praying and gathering prayers for all of you .