Saturday, June 15, 2024

The Post Op Dance

Anyone who's had a child go through open-heart surgery before will tell you the first 24-48 hours post op are a bit of a roller coaster, even more so when hemodynamics have been changed significantly. 
And even more so when you're talking a transplant where everything has changed. 

But honestly? Bodie looks really good.
I just can't get over his nailbeds - they're the same color as mine for the first time in his life!!!

His native heartrate is nice and strong, but only in the mid-80's, so they have temporarily paced him at 100 for now, just to help him out during the recovery period (this is common post-op, as higher cardiac output can help the healing process as everything settles in, and I think all kiddos come back from the OR with temporary pacing wires in for this (and other) reason). And his blood pressures have been up and down. But all things they expect post transplant and things they've very good at dealing with.

I noticed earlier today that his left leg was cool and clammy to the touch, and his foot in particular was cold (both of which were fine yesterday). The concern in this situation is always that a clot formed, perhaps when they pulled a line today or earlier and is just now appearing. So they did an ultrasound of the leg, during which time the leg warmed back up and seems fine now. We don't have the results back of the ultrasound yet, but are hopeful that it was just his body adjusting to lines being pulled (rather than a clot that perhaps travelled somewhere else). 

They pulled out his Arterial line and one other line today, which is great progress forward.

They also took out his Foley catheter, which, for reasons Bodie probably doesn't want me to get into here, was larger than typical and painful. They had planned to take it out and then replace it with a smaller catheter later today. The general consensus was that because he has so many sedatives in his system, it would be highly unlikely that he would pee enough on his own to be without a catheter. But that we'd give it some time to see how he did.

To which Bodie responded by promptly peeing all over the bed. Requiring them to change all the sheets.
Twice.

Suffice is to say, Bodie understood the assignment. 

From a sedation standpoint, the muscle relaxant has been removed and he's responding appropriately to stimulation now. (Which is to say, he wriggles when they mess with him, not that he has intentional gross motor movements yet.) We are hoping that they might be able to extubate him tomorrow, but it will depend on how he responds overnight and whether he starts breathing over the ventilator. He's been sedated an on muscle relaxants for quite a while now, so we don't want to extubate before he's ready and risk reintubation. So that will happen in Bodie's time. But we can't wait to see him fully awake and be able to tell him of the miracles that have transpired while he was sleeping.

Please continue to pray for Bodie as he navigates this critical post-op period:

1. Pray that Bodie's body continues to like the new heart and shows no signs of rejection.
2. Pray that we're able to extubate Bodie tomorrow and talk with him again (what an amazing Father's Day gift that would be for Dusk!)
3. Pray that his profusion continues to be good, with no clots anywhere in his body. 
4. As he wakes up, pray that we're able to keep him calm - and that his brain is just as smart and ornery as when he last talked to us over 8 days ago!

Photobucket

Friday, June 14, 2024

Owner of a beautiful heart

We just got to see our boy, and he looks AMAZING!


For the first time in his life, he has a beautiful sinus rhythm and 98% 02 sats, all by himself! 

We are overwhelmed with relief and awe, and so much gratitude to the donor who made this possible. I don't even think this has all even sunk in yet. 

Bodie will still be sedated for the next few days as everything settles in. And, as with any open-heart surgery, the first 24-48 hours are a roller coaster, and this roller coaster will be compounded by the risk of rejection. Needless to say, he still needs prayers. Please continue to pray that his body recovers and the heart continues to be happy in its new environment. And please please continue to lift the donor family up in your prayers as well. As we have more hope than we've had in days, the donor family no longer has that beautiful gift of hope. They have given that to us instead. So please just pray for comfort for them.

We will update more as he progresses through recovery.
Photobucket


Update #5

I just met with the surgeon, who wanted to let us know that this heart already seems to be a great fit for Bodie! hemodynamically, things look really good. There are a lot of unknowns in terms of rejection and how his body will ultimately adjust (the next few weeks will be very critical in that regard), bur for now, the surgeon said if was giving grades, he'd give this heart an A! 

Bodie is still doing really well. They are just working on controlling the bleeding, which apparently wasn't too bad considering he came in so anticoagulated. 

Once that's done, then they'll remove his pacemaker (it's in his abdomen) since HE WON'T NEED THAT ANYMORE! And then they'll get him all closed up and he should be back in the ICU in a couple of hours. 

We are speechless with the speed at which God orchestrated all of this! And currently very, very tired (I think I slept maybe a total of 2 hours last night). But so, so grateful. 

Please continue to pray as they finish the surgical process and we move into the tumultuous post operative period! Photobucket

Update #4

Just heard from Bodie's tansplant cardiologist and Bodie’s new heart is all hooked up and is working off the bypass machine! Things are looking good so far. Praise God! He will still be in the operating room several more hours, so please keep those prayers coming strong!

Photobucket


Update #3

We just heard from the OR. The heart is here, they're still working and everything is going as planned. Next update will likely be a little after 7am. Please keep the prayers coming! 
Photobucket

Update #2

We just heard from the OR. They're still working, all is going according to plan and the new heart is not here yet. Next update in 2 hours. :-) Please keep the prayers coming! 

Photobucket

Update #1

There was a delay at the donor hospital, but the procurement team saw the heart and officially accepted it for Bodie!

They have now begun surgery on Bodie. Opening his sternum will be the riskiest part as Bodie has had 5 previous sternotomies and there is a high risk of adhesions and scar tissue they'll need to work through.

Once they're through that, they'll begin the process of reconstructing his arteries, removing his stents, etc. so that his body will be ready for the new heart. 

The new heart should arrive in a few hours, at which point they can begin to remove his old heart and put the new one in.

So lots of steps to go, but praise God the heart looks good and will be en route shortly!

Please pray for Bodie, the surgeons and everyone in the room as surgery is now officially underway!

Will update when we know more! 

Photobucket

Thursday, June 13, 2024

Here we go!

Bodie was wheeled down to the OR 10 minutes ago. 
They'll place all of lines, and get him ready for surgery.
We should get our next update around 9pm, once the procurement team has laid eyes on the donor heart and confirmed that it's a good heart for Bodie.

So please pray fiercely:
1. Pray that this heart is indeed the perfect heart for Bodie.

2. Pray for Bodie's heart, brain and all of his organs - this will be a very long complicated surgery, and we need a hedge of protection around his entire body. He will be on bypass for a considerable amount of time, with all of its attendant risks of clots, brain bleeds and strokes.

3. Pray for wisdom for all parties involved, particularly the surgeon. Going from a Fontan to a biventricular heart is an incredibly complex surgery. By the time someone has gone through the Fontan, their entire cardiac physiology has been rerouted and things are connected totally different places. So a fair amount of reconstruction of pulmonary arteries and veins has to take place just for a Fontan patient to accept a new heart. Pray for steady hands for everyone involved.

4. Pray for Bodie's body to accept the new heart, and the heart to accept Bodie's body. Bodie's body is used to a very different circulation, and the new heart, particularly the right ventricle, is going to be asked to do something different than it did in the donor's body. So it's going to take both time for both Bodie's body and the heart to get used to one another. Please pray they get along quickly!

5. Pray for Dusk, Sierra and I as we sit through the hours of surgery (he isn't likely to be back in the ICU before tomorrow morning at 8 or 9am). We have a LONG night ahead of us, and it's easy to let the fears and anxieties control us. Please pray for peace for all of us. 

6. Finally, please please pray for the donor family. As we wait with anticipation and hope, another family somewhere is experiencing their worst fears, and facing leaving the hospital without their dearly loved one. And they have made the most selfless decision. We are profoundly grateful, but recognizing the sadness and agony they are going through. Please wrap them in your prayers as you pray for Bodie tonight.

We'll update as the night progresses.

In the meantime, here are a few pictures of how we dealt with the stress of this very precarious position we find ourselves in.

Dusk and his brother Paul prayed over Bodie this morning before Paul headed back to Denver (we actually got the call when Dusk was driving Paul to the airport) - we are so so grateful Paul was able to spend time with us the past few days!!!
Sierra made the cutest sign ever and we decorated his room in honor of his special heart day.
(Please note this is directed at the nurses and medical professionals doing things to Bodie that he won't like, not to the remaining single ventricle patients on the unit!) 

 Photobucket

The Call

"Well, I don't know what sort of connections you have...
but we have a heart for Bodie."

If all goes well, he will be going back to the OR tonight. 

I know.
I can't believe I'm writing that either!!!

There is still so much that can happen, and reasons the heart might not be the right one (I've seen heart friends go through "dry runs" before, so we know that's always a possibility). 

But we're standing in faith that this is Bodie's heart and God has brought him to this spot at this time because this is the heart that is supposed to be for him.

I will update more as we know more.

In the meantime, please keep praying! 
It is abundantly clear that your prayers ARE WORKING and we need them more than ever now!

1. Pray for Bodie's heart, brain and body to remain stable throughout the day.
2. Pray that this heart is the RIGHT heart for Bodie, and if it's not, that it is abundantly clear to the medical team.

3. Pray that the surgery itself is successful and Bodie is protected throughout (the surgery will be a very long surgery with a lot of risks, particularly when Bodie is already on ECMO so his bleeding risk will be higher).

4. Pray for the donor family, who in the wake of unmistakable sadness and tragedy, has made the decision to give others life.

Thank you!
Photobucket

Wednesday, June 12, 2024

All systems are a go for transplant

Bodie was accepted as a heart transplant patient by LPCH yesterday afternoon, and the insurance gave their authorization today. 
So, he was officially listed for a new heart as of 4:50pm today, with Active Status of 1A.

This means he needs your prayers more than ever! This has all happened so fast that our heads are spinning. But we need it to continue to move fast and for a heart to become available before next Wednesday, when he is currently scheduled for a VAD implantation if one doesn't become available before then.

I know it sounds crazy. 
Believe me, it does to us, too. 
But God has done crazier with this child many times. 
His wonders never cease and have been evident with Bodie so, so many times.

We used to call Bodie our 1 in a million child.
Turns out, we vastly underestimated him.

Odds of having Hypoplastic Left Heart Syndrome (HLHS): 1 in 5,000
Odds of having Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT): 1 in 10,000
Odds of having BOTH HLHS and CPVT: 1 in 50 MILLION

Survival rate of HLHS: 40% at 15 years of age 
Survival rate of CPVT: between 50% and 75% at 35 years of age 

The fact that Bodie has made it this far, with two such significant comorbidities, is nothing short of a miracle. 

We worship a God of miracles.
And we firmly believe He is not done with our son yet.
So please join us in fervently praying that Bodie gets his next miracle - and soon.

As a reminder, here are our specific prayer requests:
1. For Bodie's body and brain.
Being on ECMO for so long is so nerve wracking. Stanford is the leader in anticoagulation therapy in this instance, but that doesn't mean this plan isn't without risk. His body has responded so well to ECMO so far, which is why they're comfortable continuing, but clots could develop at any time. Every day on ECMO is a risk for clotting, brain bleeds and strokes. So please, please, please continue to pray for a hedge of security around his entire body, especially his brain! The CT surgery team was in his room twice today, examining and adjusting his ECMO cannula tubes, which have slipped a bit and started to bleed. Sedation and comfort are a tricky balance for Bodie right now, who wakes up like the Incredible Hulk, angry and ready to climb out of bed and leave the hospital. But, he's hooked up to a life saving pump that takes 99 acts of Congress to shift safely in incremental steps. And, you know, he's stoned out of his mind. Not a good combination. Please pray that we can strike the right balance of pain management to keep him calm and safe.

2. For a quick transplant listing.
Pray that the team gets everything done quickly to get Bodie listed as soon as possible. DONE!!! 

3. For the perfect donor heart to come quickly.
Bodie really needs that donor heart to become available quicker than we even anticipated, to lessen the amount of time he needs to be on ECMO. Please pray boldly that a heart comes in the next few days. 

4. For the donor family.
This is a tough one. Somewhere, a family we don't even know is about to go through the unimaginable, and they don't even know it yet. Please please pray for them. Let me be clear. We are NOT praying for someone to lose their life so that our son may live. That horrible, devastating loss is going to happen regardless of whether our son needs a heart. What we are specifically praying is that a family, in their greatest time of grief, will make the most selfless decision possible to allow their loved one's organs to give the gift of life to our son.

5. For peace for Dusk, Sierra and I.
This is hard, you guys. We're feeling somewhat at peace mostly because everyone has been praying. But also because Bodie's path has been orchestrated too perfectly to put him in this exact spot at this exact time for it to be anything other than God's ordained timing. That gives us so much peace. And we have SO MUCH faith in this medical team. We know they have evaluated all of the options and are taking this route because this is the least risky for Bodie, given all of the information we have available at this time. We can only see our limited view of our son. They can see the bigger picture, of what they typically see, of the trajectory these kids usually take, etc. And God can see the biggest picture. So please pray we can continue to lean into our team, and into God's plan. And just feel peace in it all. 

Tonight I will leave you with a picture of one of Bodie's best heart buddies, Tyler, who was born with the same heart defect as Bodie. Tyler received his new heart here at LPCH 11 weeks ago. He is a beacon of hope for us right now, and I dearly love his mom, Jennie. 
Tyler was so sweet and patient with Sierra and I today, as we ooh'ed and aah'ed over his pink lips and warm hands.

And a few pics of the boys over the years...
We cannot wait for Bodie to get his whole heart and be starting shenanigans all over again with Tyler! 

Photobucket

Tuesday, June 11, 2024

Things are getting serious here

Well, it looks like our plan is solidified. Bodie is still stable and in sinus rhythm, thank God, and is definitely taking the transplant route. They're ticking off the final boxes for transplant listing, and will discuss his case today. The goal is to have him on the transplant list within 24 hours.

The team discussed the possible use of either an Impella or a HeartMate Ventricular Assist Device. Unfortunately, because of Bodie's size and anatomy, either would require a sternotomy, which isn't ideal when he's already had 5 sternotomies and we're hoping for a transplant soon. That said, they don't want to rush to either as they believe his wait is likely to short for a heart due to his size, blood type and lack of sensitization. 

So, the plan is to list him for a new heart ASAP, and leave him on Ecmo through next Wednesday. If he hasn't received an offer by then, he will go to the OR to have a HeartMate Ventricular Assist Device placed. 

Yes, you read that right.
No one has a crystal ball, and my mind can't even wrap itself around this process potentially moving that fast.
But the team wouldn't proceed this way if they didn't think there was a reasonable chance he would get an offer in the next 8 days. 

That said, WE NEED YOU TO STORM THE GATES OF HEAVEN WITH YOUR PRAYERS!

Specifically, please pray:
1. For Bodie's body and brain.
Being on ECMO for that long is so nerve wracking. Stanford is the leader in anticoagulation therapy in this instance, but that doesn't mean this plan isn't without risk. His body has responded so well to ECMO so far, which is why they're comfortable continuing, but clots could develop at any time. Every day on ECMO is a risk for clotting, brain bleeds and strokes. So please, please, please continue to pray for a hedge of security around his entire body, especially his brain! 

2. For a quick transplant listing.
Pray that the team gets everything done quickly to get Bodie listed as soon as possible.

3. For the perfect donor heart to come quickly.
Bodie really needs that donor heart to be becomes available quicker than we even anticipated, to lessen the amount of time he needs to be on ECMO.

4. For the donor family.
This is a tough one. Somewhere, a family we don't even know is about to go through the unimaginable, and they don't even know it yet. Please please pray for them. Let me be clear. We are NOT praying for someone to lose their life so that our son may live. That horrible, devastating loss is going to happen regardless of whether our son needs a heart. What we are specifically praying is that a family, in their greatest time of grief, will make the most selfless decision possible to allow their loved one's organs to give the gift of life to our son.

5. For peace for Dusk, Sierra and I.
This is hard, you guys. We're feeling somewhat at peace mostly because everyone has been praying. But also because Bodie's path has been orchestrated too perfectly to put him in this exact spot at this exact time for it to be anything other than God's ordained timing. That gives us so much peace. And we have SO MUCH faith in this medical team. We know they have evaluated all of the options and are taking this route because this is the least risky for Bodie, given all of the information we have available at this time. We can only see our limited view of our son. They can see the bigger picture, of what they typically see, of the trajectory these kids usually take, etc. And God can see the biggest picture. So please pray we can continue to lean into our team, and into God's plan. And just feel peace in it all. Dusk's brother Paul is here with us now, and that is helping so so much. And please keep letting me know you're praying for Bodie and thinking of us - it gives us more comfort that you know! (Even if I don't have time to respond to your text, email or message, please please send it - every single one bolsters me so much!)

I will leave you with this picture. 
I know it's a sensitive one. 
But as much as I try to focus on the positives here (and I really, really do), this is so very, very serious. And I'm hoping this picture will give you a little glimpse into our sweet boy and how hard he is fighting. 
He's on a breathing machine, and the cannulas in his neck are where the Ecmo is connected, allowing the machine to do the work of his heart and lungs. He is very, very sick and needs all of your continued prayers.

Thank you, thank you, thank you for your continued prayers and love!

Photobucket

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! 

PLEASE PRAY:
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.


Photobucket

Saturday, June 8, 2024

Holding Steady

Bodie's now been on ECMO for a little over 24 hours, and so far, so good. It's definitely a dance making sure he's anticoagulated enough to not throw clots, but not so anticoagulated that he risks bleeding out. He did have a bleeding episode last night that unfortunately required 2 blood transfusions (NOT ideal when you're evaluating for transplant and you're already highly sensitized with high antibodies, but it is what it is and it was necessary). Thankfully, they got the bleeding under control and he's been stable since. 

The general consensus is that, even if we were able to get his rhythm issues fixed, at this point, his function has deteriorated so much that his function just wouldn't improve enough to sustain him. So the next few days will be spent (1) finishing what we need for his transplant evaluation (any remaining bloodwork, end organ scans, family interviews with social work, psychology etc.) and (2) determining the best method of bridging him to transplant, assuming he is listed. 

Dusk and Sierra got here late last night, and it's been so wonderful to have them here. We're all exhausted, and a little punchy, but it was nice to spend time together. 
They'll be here for a few days at least - beyond that, who knows. 

And I have to say, I am SO proud of Sierra! I was worried about how it might be hard for her to see Bodie in this state, but she didn't skip a beat - went right into the room and to Bodie's bedside. And she wasn't afraid to touch him and to ask the nurses questions. She was so brave. I am so incredibly proud of her!

Bodie is still very sick and still desperately in need of prayer, but things are going as well as they can be under the circumstances. 

Please please pray:
1. That Bodie's brain and body continue to be protected while he's on ECMO. 
2. That Bodie's heart and organs continue to heal from the trauma of low profusion, CPR and being placed on ECMO.
3. That they can quickly do Bodie's transplant evaluation and determine that Bodie is a good candidate.
4. That the doctor's have the wisdom to select the best mechanical support to bridge Bodie to transplant.
5. That Bodie can be safely transitioned from ECMO to whatever mechanical support is chosen.

I'll leave you with this pic of Bodie's little hair peeking out from under the cap on his head for the EEG (brain monitor). Sierra and I were cracking up and I just had to snap a pic.  
If you know our family, you know we use humor to get through the tough stuff. So we have to find humor where we can, and his little teeny tiny ponytail was where we found it this afternoon. 
Photobucket

Friday, June 7, 2024

Step 1 done

Bodie is now safely on ECMO and we're so grateful for that. He did great during the procedure, other than when they intubated him and his pressures dropped too low, so he required CPR for a bit. But the doctor was really happy that his heart bounced back. The general consensus seems to be that we intervened at exactly the right moment, and that his heart wouldn't have tolerated the rhythms much longer. Silver lining for sure.

He's now been moved to a different ICU room, and anyone who's seen ECMO before understands that it's a huge deal and takes up a lot of room. So he now has 2 nurses - one for him, and one for the circuit, to watch particularly for clots and whatnot. Which is good, as he's already started developing clots, so they're going up on his coagulation. Apparently, it's quite the dance to get him to the right place on ECMO. 

Please keep praying fervently for Bodie. There's really no way to sugar coat it. ECMO is very serious, and I am fairly certain the mention of it strikes fear into every heart mom's heart. This situation is very very scary. But Bodie is in the best hands possible and I cannot help but feel that God perfectly orchestrated this situation so that all of this would come to a head right as he was at Stanford anyway. Bodie is so incredibly complex, and knowing that he's under the care of doctors who are at the top of their game in dealing with complexities is such a balm to my heart. 

That said, please please please continue to pray for a hedge of protection around Bodie's entire body, especially his brain! 

1. Pray that his body and brain are safe on ECMO, with no major complications.
2. Pray that they can perfectly titrate the ECMO to reduce the clots already forming without risking bleeding. 
3. Pray that the doctors are able to take this time to very clearly see Bodie's next best steps forward.
4. If his next best step is transplant, pray that they are able to determine that he is a good candidate quickly.

I will leave you with these 3 pictures, in Bodie's honor. I know these first two look gruesome, but if you know Bodie, you know the kid LOVES horror and he loves bloody and creepy stuff! It was such a bummer that he wasn't awake to see the aftermath of his procedure (and I can't wait to show him next week!):
(They cleaned his bed up quickly, I'm pretty sure, but not before I snapped a pic to show Bodie when he comes off ECMO and is awake!)
The room afterwards. Looks a little like a war zone. Bodie will think it's so cool!
Bodie and I on Tuesday afternoon, hours before heading to the ED. I just want my sweet, funny boy back! 
Photobucket

The Scary Part

We're now moving on to what to date has been the scariest part of his journey. Bodie spent the morning really lethargic and decompensating, showing us all that managing him via medicine only wasn't going to be an option anymore.

So, right now, he's being put on ECMO. If you don't know what ECMO is, consider yourself lucky. It's essentially life support that allows the heart and lungs to rest, and comes with potential side effects that are horrific for any parent to imagine. But at this point, with Bodie continuing to decompensate, it's our best bet to keep him in a safe place. He technically wasn't needing to be on ECMO just yet, but the team felt strongly that was where he was headed, so they wanted to do it in a controlled environment, rather than waiting for him to decompensate further, go into cardiac arrest and then try to rush to put him on ECMO.

Plans are constantly changing, but the current plan is to safely get him onto ECMO and stabilize him. Then spend the next couple of days trying to figure out what is going on with his heart (once he's stable, they'll be able to do a cardiac cath or other procedure requiring anesthesia) and simultaneously evaluate him for transplant. Ideally, 1 of 2 things will happen - either the cath or ablation will solve the heart issue and they'll be able to start to preserve his heart function and take him of ecmo that way; or it won't, and they'll move him to a ventricular assist device to bridge him to transplant. 

This is all to say, we need prayers even more than before. ECMO is scary. We're very scared, but leaning into God and His provisions for our son. 

Today, please pray:
1. That Bodie can safely can go onto ECMO.
2. That, while Bodie is on ECMO, all of his organs especially his brain are protected and well profused, and he doesn't have any brain bleeds or clots as a result.
3. That the path forward is made clear quickly, so he doesn't have to spend much time on ECMO.
4. If he needs a transplant, that he's a candidate. 
4. That he comes off of ECMO safely.

Please, please pray for our sweet boy! 

Photobucket

Thursday, June 6, 2024

Waiting on the world to change...

Last night, when our dear friend Ramsey stopped by to bring us dinner and sit with us. It was such an amazing bit of normalcy and home and brought Bodie so much happiness!!! 

Bodie is holding steady, which usually is a good thing. 
But in this case, we need a change.
We need to get his EAT under control. 
He's still in EAT, and the medication we tried did little to bring his rates down or get him out of EAT.
He's still oxygen dependent, with sats in the 80s on 6L's. For a kid who runs in the mid 90's on room air, that's A LOT.

What we do know is that his heart is very sick. 
And we're kind of caught between a rock and a hard place.
We <think> the persistent EAT is causing the heart failure. 
But we need to get him out of EAT to be able to determine that. 
And what we've done in the past to get him out of EAT isn't working. 
The team believes an ablation will be our best bet, but doing a cardiac ablation will require anesthesia.
 And anesthesia is risky when his heart is as sick as it is.

I had some very serious discussions with the team yesterday, where we talked about Plans A, B and C, and the likelihood of him coming out on ECMO if something goes wrong during the procedure. To which I asked the obvious question "HOW do we get from a kid who is only needing supplemental oxygen and nothing else to talking about ECMO? That's a huge disconnect for me." Apparently, it's all in the sedation. It's dangerous to put a kid with compromised heart function under sedation, so we have to plan for everything. Processing everything, I'm so grateful LPCH is as proactive as they are in their care, and that they're thinking through all possibilities so that they're as prepared as possible. But it was still jarring to hear it. 

That said, we're walking the fine line of wanting to see if we can medically manage him to get his heart a little happier before sedating him, while simultaneously running the risk of waiting too long and his function getting worse, making sedation even riskier. And no one has a crystal ball to know which side of that line is going to be safer for Bodie.

So we let the doctors (who are far more educated than Dusk and I) put their minds together to see what solution they can come up with. They are meeting today, and including his team from CHLA in those discussions. 

And I just have to give a huge shout out to Bodie's Electrophysiologist at CHLA, who is brilliant and kind and cares so much about Bodie. He was fielding calls from the LPCH team while on his way into his own son's graduation. I am so grateful he's involved in the discussions, because he's known Bodie from the beginning and knows him better than anyone. To say my comfort level is increased significantly knowing he's being consulted would be an understatement. And I'm incredibly grateful that LPCH is so collaborative that they're bringing him into the discussions!

We're so grateful to be at a cutting edge hospital that sets the standard of care for kids like Bodie. (Let's hope our insurance company feels the same way!)

This is all to say, the plan isn't finalized yet. We know they're doing a CT of his heart, abdomen, lungs and access points at 2pm today. They would prefer to hold off on the ablation for a bit if they can, simply due to the risk of sedation. In the meantime, they've restarted Amiodarone, a very heavy antiarrhythmic he was on for a couple of years as a toddler. It actually didn't help him back then, but we're hoping that since this EAT is presenting differently, it might help this time around. But it also comes with the potential for very heavy side effects. He didn't have any of the side effects before, so we're praying he won't this time either.

So where are we at? 

WE NEED PRAYER. 
Lots of it.
And we know you all are really good at that - so please help us!
We've been here before, where his function is suddenly low and they don't know why, only that they don't think it'll get better. But it did before, and I know it can again. 

So please pray specifically: 

1. That the Amiodarone gets Bodie out of EAT.

2. That Bodie's function begins to improve, so that we don't need to do a cath or ablation, or at the very least so that we are bought some time to do either of those, time for his body and heart to heal.

3. That Bodie's symptoms improve. He's very up and down, but generally doesn't feel great.

4. That Bodie does not feel any negative side effects from the Amiodarone. He's already feeling flushed (and it's only been going a couple of hours), but we can handle that. What we need is the rest of his organs to be protected from the effects of the Amiodarone.

5. For Bodie's mental health. Bodie hasn't been inpatient in quite awhile, and that's such a double edged sword. When hospital admits aren't the norm, they're very jarring, and you feel the profound difference between them and "normal life." Bodie is incredibly resilient and he'll adapt and get into it. But I definitely see moments that break my heart, where he asks when he gets to go home, and how long he has to stay. Just pray that he continues to be resilient and his typical silly, sarcastic self. 

6. For Amy's mental health. I generally consider myself a flexible person and I'm good at change - just not right when it happens. I have a really hard time being thrown into things, and need the time to process and be scared and sad. And then I put my big girls panties on and suit up to be strong for Bodie and to have all the hard conversations. But it's easier said than done and I'm not quite there yet. So pray for patience for me, that I remember to lean into God and His plans. I know He's been in charge the entire time and I know He has plans here. It's just sometimes hard to remember that in the thick of the scary places.

7. For Dusk and Sierra to feel comforted. It's so hard being far away when something critical is happening to a family member. We've talked about them coming up, but we don't know yet how long this stay will be. So in the meantime, pray for peace and comfort for the two of them. 

We will continue to update as we know more. 
Photobucket

Wednesday, June 5, 2024

Here we go again...


This was not the post I was expecting to write...but alas, it appears we are here. 

Bodie had regularly scheduled appointments at the Stanford Single Ventricle clinic this week. So we had planned to come up here anyway. But he started showing signs of heart failure suddenly on Monday (exhaustion, low 02 saturations (in the 70s!), stomach pain, etc.), so after lengthy discussions with his teams at both CHLA and Stanford, when we got up here yesterday, we brought him to the ED. He was admitted to the Cardiovascular ICU late last night / early this morning. 

We don't know exactly what precipitated this sudden onset of heart failure symptoms, but we are highly suspicious that it's the result of going up on his anti-arrhythmic med, Flecainide, in April. Anti-arrhythmic meds always have the potential to cause the very arrythmias you're trying to control (or other ones), and in this case, we think that's what happened.  Somewhat odd that the med worked so well at the lower dose, but this is Bodie, so we have to kind of expect the unexpected. 

What we do know is that Bodie has likely been in Ectopic Atrial Tachycardia (EAT) for some time now, and when his body is in prolonged EAT, even at low rates, hemodynamically, his heart and body become very unhappy. It's bit of a chicken and the egg situation - did the the heart failure cause the EAT, or did the EAT cause the heart failure? We're leaning toward the latter, with out current goal to get him out of EAT and let the dust settle, to know exactly what we're dealing with.

All that said, the plan is kind of murky right now. He's inpatient. We don't know how long. We have a couple of plans to get him better, but don't know yet which will work. He's currently on high flow oxygen, which is enough to maintain his sats without any IV meds, which is good. We're starting a new med today that works for some patients with CPVT and EAT. The med makes a tremendous difference for some patients, and does nothing for others. We won't know which camp Bodie will fall into until we start the med. We're praying he falls into the camp where it makes a tremendous difference. If not, the next step will likely be an ablation, which isn't without risk when the patient has compromised function. So, one step at a time.

In the meantime, he's tired. I'm tired. We got all settled and finally went to sleep around 4am. And he's HANGRY. So so mad they won't let him eat and I won't get him food. So he's pretty sassy too. 

Please pray for Bodie. 
1. Pray the EAT stops.
2. Pray we can clearly determine that the EAT caused the heart failure.
3. Pray that his heart recovers quickly. 
4. Pray for his spirits. He's pretty bummed to be here, during his first week of summer. 

Thanks for praying for Bodie!
Photobucket