The Post Op Rollercoaster

The last 48 hours have been ROUGH. 

Cardiac wise, Bodie looks good. Really, really good. THANK GOD.

As far as we can tell, his HEART appears to be on the fast track for recovery.

Unfortunately, the rest of his body did not get that message.

The rest of his body is very clearly saying "HOLD UP. This heart has a new lease on life and that's great. But WE have been put through the ringer in the past 2 weeks. We've been lying in bed for almost 2 weeks now. We spent 6 days on Ecmo, then laid on an Operating Room table for the better part of 15 hours, then spent another 3 days on a ventilator. So, yeah, just SLOW.YOUR.ROLL."

- His lungs are junky sounding, with a lot of mucus in his upper airways.

- His muscles thankfully haven't atrophied, but are tired and out of use.

- He basically needed enough sedation meds to take down a horse for the better part of 2 weeks, so his body is missing those drugs something fierce right now, and he's basically a strung out junkie with serious withdrawal symptoms like body tremors, delirium, inability to sleep and restlessness. We dealt with withdrawal after his very first surgery at 5 days old, but luckily haven't had to deal with it in any subsequent hospital stays.

- His vocal cords are tired and we're not sure yet whether there is additional damage or they just haven't had a chance yet to recover from surgery and intubation. 

- Due to sensitive skin, he has several pressure sores that have developed. Most of them are just early stages, so the wound team is protecting them but they should heal just fine. But there is a more significant one on his sacrum. Again, it should heal, but it may take some time.

So, he just has a lot going on.

He was looking ok earlier in the day yesterday, but got progressively more tired throughout the day, and was having to work harder to maintain his oxygen saturations. He was able to work with speech a little bit before tiring out, and was just too tired to even keep his eyes open when PT tried to assess him. By the end of the day yesterday, he asked to be moved back to the high flow oxygen (he had been on a regular nasal canula all day). And you could hear all of the secretions trapped in his upper airway. He sounded like a staticky radio station when he breathed. 

Going into the evening, he was just so restless. He would close his eyes for a minute or two, then open them and change position. And he was experiencing full body tremors (which, for the record, are now officially my least favorite post-op symptom). He wanted me to stay with him and hold his hand. Which I did. I had planned to stay until he fell asleep and then sneak over to my parent sleep room and get some sleep myself. 

Except that he didn't sleep.

The nurse finally looked at me around 1am and said "He's not going to sleep tonight. This is delirium and it's terrible. I've seen kids go days and days without sleep. You just need to go get some sleep." So I heeded her advice, but told her to make sure to call me if anything changed or he just really couldn't be calmed. So she did. 

At 4am, she called and let me know he was just not looking good, and they weren't sure the tremors were actually just due to withdrawal at that point. He was warm, so they ran blood, and found out that his white blood cell count had skyrocketed. So they ran cultures, but because he is so severely immunocompromised, they can't take any chances while waiting for those labs to come back. So they started him on 2 different antibiotics, which should catch most bacterial infections. They also moved him from high flow oxygen to a CPAP mask, because it was clear he needed more support, and added in more breathing treatments to try to help get those secretions up. I came to his room and sat next to him for the next few hours, praying over him and asking God for yet more miracles. 

And it feels like He provided for our son yet again.

Because within a few hours, he started to settle out. 

His breathing became way less labored. 

The CPAP settled his lungs.

The breathing treatments, combined with suctioning (bless his heart, Bodie had to put up with that painful process every 4-6 hours throughout the day today), helped clear his upper respiratory tract considerably.

The addition of a Clonidine patch helped significantly with withdrawal symptoms.

Getting more of the narcotics and opioids out of his system meant he was more awake throughout the day today, allowing both PT and OT to work with him, getting him sitting on the edge of the bed and even standing 3 times!

By tonight, the picture had completely turned around.

He's still not out of the woods, but SO MUCH BETTER.

He still has tremors, but at least they're not whole body tremors anymore. They have settled enough that he can use his phone to text me, which aids considerably in communicating as he's still so quiet.

And, best of all, as I type this, for the first time since being extubated, HE IS SLEEPING PEACEFULLY - and has been for a couple hours now!!! Praise God!

Tonight, he attempted Legos for the first time since we got here.

It wasn't easy.

Not by a long shot.

He was exhausted and his hand tremors mean that not only is it hard to pick the Legos up, but even harder to piece them together and have the strength to snap them in place.

But he did. 

 

 If you know Bodie, you know he has an extremely low frustration tolerance (possibly non existent). So as I was watching him try to build, I was waiting for the frustration, the sigh, the "I give up" or "nevermind."

But I never heard that.

I didn't see one bit of frustration.

Just hard work and patience.

It took him 30 minutes to build something that he could ordinarily do in 5 minutes.

But he persevered.

And I could not be prouder of him.

So tonight (if you're still reading - sorry for the long entry tonight!), we'd love your prayers:

1. Pray for Bodie's lungs - for continued healing, and that he's able to clear the rest of the secretions from his airway.

2. Pray for Bodie's body - that he continues to regain strength and fully participate in PT and OT to get those muscles working again.

3. Pray for the infection - that the doctor's determine the cause of it and can quickly and effectively treat it. Infections are scary so close post transplant as Bodie is so severely immunocompromised.

4. Pray for Bodie's spirits - although we've seen a smile here and there, he's definitely not back to his usual self by any means. 

5. Pray for sleep - that Bodie sleeps well tonight and thus restarts his regular sleep cycle. 

6. Pray for wisdom for the doctors - there is talk of either moving Bodie to the floor or waiting until Monday, as they don't feel comfortable moving him over the weekend. Although Bodie is on a positive trajectory, there's still a lot we don't know and are still working out, and I think he'd be so much safer in the ICU over the weekend. Please pray that the doctors feel the same way.

7. Pray for continued healing for his vocal cords, so that he will get louder without needing any further intervention.

8. Continue to pray for the donor's family, without whom NONE of this would be possible. 

Where the rubber meets the road

Bodie was extubated yesterday, praise the Lord! 

And if you haven't seen Dusk's video on Facebook chronicling the exact moment Bodie learned what transpired while he was sleeping, you can see it here (but be forewarned - you'll probably want to make sure you have tissues on hand):

By all accounts, Bodie's journey thus far has been nothing short of miraculous. The way his heart protected him exactly long enough to get him to this point, the way our schedules aligned perfectly to have him here at Stanford right now, the short time he had to wait for his heart...the list goes on and on and one day I'll list all of the miraculous ways God perfectly orchestrated the past two weeks.

But in the meantime, Bodie is doing well, but now at 4 days post-op has hit the part where the healing really starts to hurt. 

From a cardiac standpoint, his heart is doing fantastic. His body seems to really like his heart, his profusion is great and he's doing well. 

But from a neuro and muscular perspective, we have some work to do. Bodie was in bed and heavily sedated for 11 days. And due to his size, surgical history (i.e. the amount of times his body has seen narcotics in the past) and strength, they had to use some heavy duty narcotics to sedate him properly. So we're dealing with the really non-fun parts of withdrawal now. Or, what we're assuming are withdrawal symptoms. 

To be honest, when a nurse asked me if I thought Bodie was experiencing withdrawal, my response was more akin to "Seriously, you're asking ME? Look at me. I'm a 45 year-old overweight mom who's also an accountant. What exactly in that profile makes you think I would be a good resource for assessing narcotic or opioid withdrawal? The extent of my knowledge comes from Netflix and Hulu documentaries...but yes, he does look kinda like the guys in Dopesick, so I think so..." Suffice it to say, we're dealing with a lot of tremors, some hallucinations, sweating, yawning and other unpleasant side effects of coming down off such heavy duty drugs. The good news is that the team is used to this and knows how to treat it. They're transitioning Bodie to other meds to help with withdrawal. But it's a process and unfortunately one we just have to walk though to get to the other side.

We're also dealing with a lot of muscle weakness, but that should come back pretty quickly once he's back on his feet again. PT and OT came by today, and we had him sit on the edge of the bed and dangle his feet. Or, more accurately. the nurse and I completely supported his body while he shook violently and dangled his feet. But each time he does it we know it will get better, and this is just a transient phase.

OT came by to assess his swallowing safety to see how soon we could let him start to eat and drink again. He was really too tired to do anything they wanted him to, so we'll try again tomorrow. But he is very, very quiet. If you haven't been following us for very long, you may not know that Bodie's left vocal cord was damaged in his very first open-heart surgery at 5 days old. While he was only at risk of aspiration for the first 18 months or so of his life, his voice has always been quieter and more raspy because of it. We finally had vocal cord injections done about 3 months ago, which helped considerably. Right now, he's unable to make much sound. But it's not uncommon post extubation to be quieter than normal, as everything is still very sore and swollen. So our hope is that he'll get louder over the coming days, and that his cord was not reinjured. Really, his left vocal cord has never moved since that first surgery, so it's probably hard to do more damage to that side. But it's possible his right cord was injured this time. Or, because his right vocal cord has to work extra hard to make up for that non-moving left cord, it may just take longer for his voice to come back. The coming days will tell. In the meantime, he's frustrated because it's very hard for us to understand what he's saying. We try, but about the only things that have been VERY clear have been "I just want a freaking bottle of water!!!" and "There! It's RIGHT THERE!" when asked about whatever hallucination he is seeing in the middle of the room that the rest of us aren't privy to.  We've tried having him text us on his phone or write on paper, but because of the withdrawal tremors, his fine motor skills aren't quite there yet. 

So this is all to say, today was a frustrating day. We made a lot of progress in terms of weaning meds, going down on oxygen, etc. But this is so hard for Bodie. Yes he got a new heart and he's excited about that. And he knows he'll feel better soon. But today, he's only 4 days out from major open-heart surgery and his entire body hurts. And he still has IV's in his arms, a high flow cannula blowing oxygen up his nose at mach speed and pressure 24/7, and people making him do things that hurt all day long. He's exhausted and his spirits are low. We've hit the part of recovery that just plain sucks. 

Dusk and Sierra flew back home earlier today, which I was sad about. But I'm so grateful they were able to be here during the really scary stuff - that's when we as a family really needed each other.  

And, really, they don't need to be here for this part. Bodie and I have done this nonfun part many times before. And it doesn't last too long - just have to get through the next few days. Once he turns a corner, he'll be unstoppable. But for now, we just spend a lot of time sitting and holding hands.

 

So, for tonight, a few prayer requests we really need:

1. For Bodie's body to rest.

He's tired. So tired. He's trying so hard, but his body needs rest. Please pray he gets good rest tonight, so that his body will be ready to start moving more tomorrow.

2. For Bodie's vocal cords to heal.

Please pray for his vocal cords start to show healing tomorrow.  Because of his previous injury, we all have a little PTSD when he comes off of the ventilator and is really quiet, even though it's totally normal even without a vocal cord injury. But it just makes things so frustrating for him to not be able to communicate his needs effectively. And if they are injured, it will slow down the eating and drinking process as we'll have to have him scoped, do a swallow study, etc. Just pray he heals and we don't have to worry about that. 

3. For Bodie's spirits to brighten.

He's happy about his heart, but he's pretty bummed right now. Around here, they call it the "post-transplant blues": you expect to be really happy about getting a new heart, but you really feel crappy because of everything your body just went through. Sierra had some really sweet gifts for him, and he barely cracked a smile. There's really no distracting him from the misery right now. So just pray it lifts soon.

3. For our donor family

As always, please please keep Bodie's donor family in your prayers. In the midst of the tough days Bodie is in the middle of, I know it will get better. And we're envisioning all the incredible opportunities and times Bodie has ahead of him. We have this beautiful gift of hope only made possible by his generous donor family. But his donor family doesn't have any of that. And I'm certain they're struggling right now. Please, please pray for an extra measure of grace for them right now. 

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!

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.

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!

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!

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! 

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! 

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! 

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!) 

 

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!

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! 

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!

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.

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. 

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! 

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!