Birthday Blessings

I've spent my fair share of holidays bedside at the hospital. 

Usually, birthdays spent in the hospital are my least favorite. 

But this year was different.

Today is my birthday, and I got the best birthday gift!

Yesterday, Bodie had his first post-transplant cath and it went great! All of his pressures looked fantastic and his biopsy showed NO REJECTION! And today, after 24 days in the ICU, Bodie moved to the step-down floor! 

Bodie's health is truly the best birthday gift I could have asked for!

To top it off, yesterday, Bodie kicked me out off the room so that he could arrange a surprise with his nurse. He sweetly asked her if she could get a cupcake for my birthday, since he really wanted me to have one, but he can't leave the hospital. The nurse wasn't quite able to accomplish that, but she did manage to snag me a couple of pastries from the cafeteria! 

She was so touched by Bodie's sweet request. And so was I! My sweet boy is definitely back!

He paid me back by making me watch Saw with him. 

Which he was super excited about.

Clearly, I did not agree with his assessment.

Have I mentioned how much this kid loves horror movies?

Now that Bodie's on the floor, we'll be hard at work on weaning his Oxygen, getting him off Dopamine, transitioning all of his medications from IV to oral, gaining his physical strength, and strengthening his vocal cords so that he can eat and drink again! It's a tall order and it's going to take time, but if anyone is up for it, it's Bodie!

As we move into this next phase of healing for Bodie, please keep praying!!!

Your prayers have provided miracle upon miracle for Bodie and we are so deeply grateful. 

Please pray for both strength and patience for Bodie. 

He has lost of lot of weight since being inpatient, and he's going to have to work hard to regain his strength. And not being able to eat or drink is so hard on his spirit. ENT re-scoped him yesterday and there is still no movement in either vocal cord, although he is able to make noise using a muscle in front of his vocal cords. But as a result, he still hasn't been cleared to eat or drink, other than practicing swallowing with 3-5 sips of water 5 times a day. This was NOT how he planned to spend his summer and he's trying to be a good sport about it, but he's a 14 year old boy and he should be spending the summer outside, swimming, eating ice cream and going to the beach, not cooped up inside a hospital room and only allowed small sips of water. So please please pray for his body and spirit. Pray for his vocal cords specifically, and that he doesn't catch any other infections. 

Please pray for patience and flexibility for all of us. 

I know in the grand scheme of things, this will just be a blip on our radar. 

But a blip we didn't plan for. 

And being separated this long wasn't on any of our Bingo cards for 2024. 

Dusk and Sierra are having to pick up a lot of chores at home that Bodie and I usually do, while they're both trying to work. And I've been trying to do client work when I can, but it's been hard when Bodie's needs have been so unpredictable and practitioners are in and out of his room constantly. We all miss each other, and Bodie and I miss sleeping in our beds, loving on our animals and all the comforts of home. We're just tired and trying to remain flexible and patience as all of this unfolds. 

And, as always, please continue to lift his donor family up in your prayers.

At the end of the day, we'll give all the flexibility and patience in the world because we have the hope of newfound life for our son thanks to their generosity.

2 weeks down...a lifetime to go

2 weeks ago tonight, Bodie was in the OR awaiting his gift of life, and we were waiting anxiously to hear that he had come through surgery and his new heart was beating safely in his chest.

It's been a long 2 weeks, with many ups and downs.

All in the course of receiving miracles, I suppose.

They unfold in their own time.

We just get to witness them.

Today, I got to see my boy fully come back to me.

Not just little glimpses of the silly, sarcastic, smart, deeply feeling boy we put onto Ecmo almost 3 weeks ago. 

But big ear to ear smiles.

He actually asked to go out on the patio today!

He Facetimed with Sierra, who was the best big sister and found the perfect filter for our horror loving boy:

And laughter. One of his nurses said today it was the first time she had heard him laugh (for the record, it was because she had asked him if he had any siblings besides Sierra and when I said no, he looked at me with a smirk and said "yeah, how are you coming on that?")

Tonight, he asked to get out of bed and sit in the chair (which is hard work for him physically) and watch The Shining with me:

 

He still has a LONG way to go physically. But he has to start somewhere, and today he really did. Today was probably the first day the delirium was gone enough for him to have the energy to really engage in PT - and, for the first time since surgery, he WALKED! 

He had a repeat ENT scope today, and although he is making a very small amount of sound now, which is amazing to hear, it's not actually coming from his vocal cords, but from the muscle in front of them. The ENT still isn't seeing movement in either vocal cord. Which means he's still not cleared to eat or drink. :-( We need prayers for this, please! I've asked speech to come reassess to determine whether, now that he's more alert, he's better able to protect his airway and might be cleared to eat and drink again. Hopefully that will happen tomorrow.

Speaking of tomorrow, Bodie has his 2 week post transplant cath tomorrow, which is a big deal! They'll be looking at the pressures in his heart as well as doing a biopsy of a small portion of his heart muscle. Both things are designed to check for rejection. Transplanted organs can be rejected at any time, but the highest risk for rejection is in the first year, especially within the first few months. So tomorrow's cath will be critical for Bodie. 

That said, we'd love your prayers for the following:

1. Pray for Bodie's cath tomorrow

Pray that it goes smoothly, that he doesn't need to be intubated (we want to baby his vocal cords right now!) and pray for NO REJECTION of this beautiful new heart!

2. Pray for Bodie's vocal cords

Pray for immediate healing of both of his vocal cords, so that he's able to eat and drink again safely.

3. Pray for his body to continue to heal and strengthen

He's working so hard in PT and OT and I'm seeing his strength starting to come back. But he wants to be more independent and have at least the strength he walked into the hospital with. Please pray he continues to be strengthened in his body and mind.

4. Pray for the donor family

As we celebrate Bodie's first 2 weeks with his new heart, I know the donor family is marking today in a very different way. I'm certain every anniversary must bring new pain and sadness. Please pray for extra measures of grace for them. 

The Heart of a Warrior

Man, this recovery is tough stuff. 

It feels like for every step forward, he takes two steps back.

I know it's not actually like that.

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

So we ARE making progress.

It's just slower than we'd like.

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

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

Any of these factors by themselves are tough, but manageable. 

Throw them all at the same person at once and you have an uphill battle.

In Bodie's case, they thought his body could handle it. 

He had just "walked in off the street," and had good muscle tone and reserves that someone who had been in heart failure for some time just wouldn't have. 

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

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

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

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

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

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

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

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

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

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

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

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

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

So is it any surprise that he looks like this?

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

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

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

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

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

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

Our dear friend Gaby stopped by, with her trademark sweet smile and gifts for Bodie and I from our best friends at home. Bodie's best friends (we call them the "quad squad") sent him sweet cards and a framed pic of the 4 of them. 

He put the cards up and the picture is prominently displayed where he can see it. 

Dusk's Aunt Meri and Uncle Greg sent him a huge box of Star Wars stuff, which made his day. 

The highlight of the gift was a personal fan. Not sure Meri and Greg even know this, but Bodie is dying of heat all the time! We think it has something to do with still getting used to the good profusion of his new heart. Ice packs are his new best friend. So his eyes absolutely lit up at the fan! 

Grandma Jan sent him some hilarious taco socks and Gigi Nancy sent him an awesome new shirt. Thanks for keeping him so stylish in the ICU!

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

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

For prayer requests tonight, we do have a few:

1. Please pray for Bodie's vocal cords to continue to improve.

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

2. Please pray for his body to continue to heal.

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

3. Please pray for his sleep.

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

4. Pray for patience.

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

5. Pray for Bodie to understand how amazing he is.

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

6. Pray for the donor's family.

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

Delirious much???

At the risk of being repetitive, the last 48 hours have again been ROUGH.

Big picture and cardiac wise, Bodie continues to do really well.

We're so so grateful for that.

But we're dealing with what appears to be delirium, and let me tell you, it's no joke.

I had been warned about teenagers and delirium, particularly post-transplant.

But I didn't think we'd have to worry about it.

Because Bodie's had 6 heart surgeries before this.

So we totally know how to deal with the difficult post-op period. I mean, Bodie was walking the halls at 3 days after his Fontan.

We're pros at this.

We'll be fine.

And, to be clear, we WILL be fine.

But yesterday, we were NOT fine.

And today, we are NOT fine.

Let me give you an honest picture of what delirium looks like.

I hesitate to share these pictures.

But I want you to understand what we're dealing with. 

And I want other heart moms heading into open-heart surgery and/or transplant to know what to expect, because it's a completely different story than his previous surgeries when he was younger.

THIS is delirium.

It looks like Bodie suddenly taking an extreme interest in the ceiling and staring in fascination at it. For hours.

It looks like calling his name and him slowly turning toward you, and tracking you, but not actually responding to questions other than slightly nodding or shaking his head.

It looks like suddenly deciding he no longer wants to swallow his own saliva because "why would I want to keep that?" and instead allowing it to drool down his face.

It looks like him finally getting some sleep, but then waking up with a start, looking around very confused and not sure about where he is.

It looks like sitting bolt upright and wanting to get out of bed to work on sitting in a chair and build Legos...at 3am.

It looks like insisting on holding my hand until he falls asleep...except that he won't sleep longer than an hour at a time.

It looks like him being scared to talk because of his vocal cord issues, and only communicating via gestures and occasional whispers.

The team here has told me in many ways, it's the hardest part of the recovery at this age.

And I can't disagree. 

We are lucky that his delirium isn't constant. 

We have heard stories of friends' whose kids don't crack a smile for 10 days, and have a completely flat affect. Bodie isn't like that. We do see snippets of him through it. We have seen some smiles. He's not violent (I mean, sometimes, but I'd probably be violent if someone was sticking a small tube to the back of my throat to suction my snot too - but really he's very cooperative with everyone). We see his great sense of humor and witty comebacks, even through the fog. So we know he's there and we just have to be patient.

But patience is not my strong suit, to put it mildly. 

We see his heart looking good. 

We see his body slowly healing.

The culture showed the infection he's fighting is MSSA (a staph infection) in his blood, and he's responding really well to the antibiotics.

We see his body getting stronger by the day. 

2 days ago he couldn't sit in the chair for more than 2 minutes without unstrapping himself and trying to get right back in bed from exhaustion. Yesterday, he stood up 2 times, took a few steps, and sat in the wheelchair for almost an hour! So we're seeing the strength coming back.

We see his lungs healing. 

He's still on high flow oxygen, but they're slowly weaning it. We're discovering that his lungs don't like big changes, but we're getting there. He'll be off oxygen before too long. He's getting stronger and able to cough up more and more on his own, requiring fewer respiratory treatments.

And we see the delirium getting a little better each day.

This morning, he gave me the greatest gift. 

When the team was in the room assessing him, he asked for a marker. We gave him the white board and a marker and he wrote this:

He then drew a heart tattoo on my arm, and I drew a matching one on his:

So we see him in there! 

I almost started crying - and the practitioners in the room were really touched as well.

He's coming back online, but it's just going to take time. 

And it's exhausting.

As his mom, I just want my baby boy back the way he was. 

I'm trying so hard to focus on the small victories, and to remain positive for him.

But it's just.so.hard.

I know it will get better.

I know it.

But it's just hard to keep focused on that.

Once we're out of the ICU, I'm certain it will get better. 

But while we're stabilizing things from a vocal cord and oxygen dependence perspective, we're still in the ICU. They'll move him to the floor when they're confident he's ready, and I'm in no rush to race to step down before he's ready, and then have to bounce back. Once we're in step-down care, I'm sure the delirium will get better. In the meantime, we're doing everything we can in terms of getting him outside, working his muscles, keeping lights on and windows open during the day and off / closed at night. 

So, today, we covet your prayers for the following:

1. That Bodie comes out of the delirium stage. 

This stage is exhausting and demoralizing for the both of us. I know his physical healing will go so much faster when he's not fighting through a ton of brain fog.

2. That Bodie's vocal cord strength returns.

I'm worried that his right vocal cord may have been damaged (in addition to the left one that was already permanently damaged during his first surgery). Please please pray that there is no additional damage and that his right vocal cord strength comes completely back, allowing him finally to eat and drink!

3. That Bodie's strength continues to increase.

We see his physical strength increasing by the day, but it's still frustrating for him that his body doesn't respond the way he wants it to. The faster his physical strength comes back, the more independence he can gain.

4. That Bodie's spirits improve.

This is so stinking hard. He's always a kid who has had big feelings, and he's not talking much about them right now, but I'm certain he has a lot of feelings right now. I'm encouraging him to talk to me about it, but it's hard when he doesn't even want to try to talk. We're inching slowly towards talking, but please pray he'll open up about his feelings and we can help him through it. And he's just so down. We see occasional smiles, but even things that usually he would be so excited about don't elicit a big response. Again, our friend delirium has a seat at the table here and is making its presence known. He'll see psych tomorrow, so that should help. But please pray for him to see the great strides he is making, and for him to believe he WILL get back to 100% (well, actually better than 100% when all is said and done!).

5. That his heart continues to do well.

By all units of external measurement (echo, x-ray, labs, vitals, etc.), his new heart appears to be very happy in its new home. But he'll have his first cardiac catheterization this Friday to look at the pressures and check for rejection. Please pray all goes well and everything inside looks as good as it does on the outside. 

6. That he can come off of oxygen.

His oxygen needs keep going up and down, I think partially corresponding to his delirium episodes. It's hard on his body to keep going up and down, but we're trying to get to a point where he can be weaned, so the team is walking a fine balance of weaning, but not too aggressively. He's already off a lot of things - is down to only 1 peripheral IV, the pulse ox, an NG tube for feeds, and the hi-flow nasal canula. But getting rid of the hi-flow will allow him to progress toward trying liquids again, and just get him more independent. And, get it off his face so he can work on getting those facial muscles back up in full force again. 

7. For the donor family

Whenever you pray for Bodie, please please keep praying for his donor family. I've been asked what we know about the donor family, and the answer is nothing. UNOS has very strict guidelines about that, and even most (all?) of the surgical team knows nothing about the donor other than the blood type. Only the procurement team was given more info. At some point (I think a year), we will be permitted to reach out to the donor family via UNOS. UNOS will let them know the recipient family has sent a letter, and then it will be up to the donor family to decide whether or not to respond. We will want Bodie to make that decision, but I am hopeful that he will want to reach out, so that we can thank the family personally for the incredible gift they selflessly gave to him. For the meantime, we just ask for prayers for this family, for peace and the knowledge that their loved one is living on in Bodie and others (I don't know what other organs were donated, but at least some were, as the transport of the heart to LPCH was due to a delay in the other teams arriving at the donor hospital).  

Thank you so much for continuing to follow Bodie's journey, and for always praying for him. It has made a world of difference in his healing already!

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!)