Wednesday, July 17, 2024

He did it!

Click here to see a really fun video of Bodie leaving the Critical Care Unit!

After 42 long days and nights spent in the hospital, 7 days on Ecmo, a heart transplant, MSSA in his bloodstream, battles with delirium and weakness, today, for the first time in his life, Bodie walked out of the hospital with a whole heart. 

 Hours before he did so, we were informed that upon reviewing his biopsy more closely, it was determined that he is only in 1A rejection, rather than 1B. Beautiful, beautiful news! 

 To say we are immensely grateful doesn’t even come close to expressing our emotions. 

 But words are all we have. 

 So tonight we say thank you. 

 Thank you to the medical team who worked tirelessly making the best decisions possible for our very complicated boy. 

 Thank you to the legions of prayer warriors who hit your knees day after day praying Bodie out of the scary parts of this journey. 

 And thank you to the family, who in their darkest time, made the most selfless decision to give our son a chance at life. 

 And now we begin the next chapter in Bodie’s journey. 

 One which keeps us away from our home at least two more months. 

 And includes a whole lot more healing. 

 And a lot more hospital visits (starting this Friday, actually). 

 And a lot more learning new medications and how to administer tube feeds. 

 Lots to do. 

 Lots to worry about and be in prayer over. 

 But for tonight, we gratefully take this win. 

 And pray for many more in the days to come.

Monday, July 15, 2024

Hungry, Hungry Hippo

After five and a half very long weeks, this dude was finally cleared for any solid foods he wants to eat!

He celebrated with his favorite, of course - Panda Express! After some orange chicken and chow mein, he finished it off with half a Sprinkles Red Velvet cupcake.

A well fought battle to get to this point and we could not be more excited for him!

He is still aspirating all liquids, including thickened, so our friend the NG tube is sadly not leaving us anytime soon. He's still only cleared for an ounce of water five times a day. So we still need prayer for those vocal cords to heal.

But for today, we're relishing in this very big victory of our boy finally getting to eat again! Thank you so much for your prayers to make it happen!!!


Sunday, July 14, 2024

Wearing out our welcome

Today marks 40 days and 40 nights spent in the hospital. At the risk of sounding blasphemous, let's just say I have a newfound appreciation for Jesus during his time of fasting and temptation.

Turns out, 40 days is a looooong time.

I should note that, in the world of heart transplants, being inpatient 40 days is nothing. I mean, really, it's a drop in the bucket considering how long most recipients wait. That fact is not lost on me. Nonetheless, because all of this was so unexpected, 40 days is feeling very long at the moment.

We've done our best to try and keep Bodie entertained...

We've played Battleship (as it turns out, neither Bodie nor I are particularly good at it!)

He's started building Legos again (2 sets today!)
Our best buddy Tyler (who received a heart transplant 3 months ago!) came and won an epic Uno battle with us.
With the help of one of my best friends, Monique (who selflessly came up and spent the past few days with us, filling my very empty bucket and loving on us so beautifully), we staged a jailbreak and snuck Bodie down to the parking garage, so he could get in our van and see the very cool battle axe that Dusk had bought for him when he was on Ecmo!

So we're doing our best.

But we're tired.

And very, very over being in the hospital.

The good news is that the end is getting closer!!!

Bodie had a very busy cath on Friday, and for the most part, the results were great - thank you all so much for your prayers!

Heart Pressure Check. They checked the pressures in his heart, which were a little elevated since his cath 2 weeks ago. But because his echoes have been consistently good, they weren't too concerned and just want to titrate his diuretics up a bit to get him a little more "dried out." He's already on Lasix 3 times a day, so they also added Diuril to his med regime.

Right Heart Biopsy. They also did a biopsy on a tiny bit of tissue in his right ventricle, which showed Level 1B rejection. I'm still learning the new language of the post transplant world, but the team explained that ideally rejection is at 0 (no rejection whatsoever) or 1A (mild focused spots of immune cells which aren't rejecting the heart tissue - essentially, coexisting with the heart, but not attacking it). 1B (mild diffused spots of immune cells) isn't bad per se, but not as ideal as 0 or 1A. But they don't treat it, just watch it to make sure it stays in the 1 category (a lot of post transplant recipients bounce around between 0 and 1B and all are considered ok) as opposed to trending downward into Level 2 or 3 rejection. So, for now, no changes to his meds and we hope it looks better on his next biopsy.

Staple removal. They removed the remaining staples (on his central incision), so all of his sutures are now out and healing nicely!

NG Tube Swap out. He had been complaining of a lot of discomfort with his NG tube (the feeding tube in his nose). Unfortunately, until his vocal cords have healed, the NG tube is here to stay for feeding and meds. But the Psych team let us know that he might be able to downsize to a smaller NG tube. As it turns out, he could safely go down one size. So we let him choose whether he wanted it done earlier this week when he was awake, or just have it done during the cath, while he was asleep. He opted for the latter. Smart boy. ;-) He seems much more comfortable with the smaller tube.

Vocal cord injection. They did injections on both the left and the right vocal cords during the cath. They injected more than they anticipated going in, so we're all hopeful it'll make a difference in his swallowing abilities! We're already hearing a little more sound when he speaks, so we definitely have reason for that hope. They'll be doing a repeat swallow study tomorrow or Tuesday, and we are fervently hoping for news that we can increase his feeds by mouth as a result!

Discharge planning. The Big D word has finally been spoken, and discharge planning has begun in earnest! We've done transplant training and pharmacy med training, home meds have been ordered and I've started getting trained on the actual administration of his home meds. We're still waiting for the home health care team to provide the feeding pump and train me on it, but hopefully that will happen Monday or Tuesday. The swallow study will be done to confirm our feeding plan going home. And we're still titrating diuretics up and down, so need a couple more days to get that to a happy place. ID has confirmed that once everything else is done, we can pull the PICC line and discontinue his antibiotics, even if that ends up being a few days earlier than planned. Once that's all done, we should be good to spring this joint! Hopefully on Wednesday!

As we head into this next week in the hospital, we covet your continued prayers:

  1. Healing for Bodie's vocal cords. Please please pray that this next swallow study shows that Bodie is able to effectively protect his airway when he swallows! The poor kid is so tired of not getting to eat and is desperate to eat again. Please please pray that the vocal cord injections were effective! Please also pray for him to be able to make more sound with his vocal cords. He can whisper and we can understand him, but it's still hard for him to make much noise to communicate.
  2. Cooperative insurance. Please pray that our insurance quickly approves all of the home meds and NG supplies so that discharge isn't held up.
  3. Supportive donors. We are overwhelmed with the financial support we've already received and cannot thank you all enough for the generosity! Please pray the generosity continues and others will feel led to support us as well. We recently learned that the nonprofit who was going to be funding our post transplant housing will not have as much funding available as they had hoped. Thankfully, they'll still be funding some of our hotel stay post hospital discharge, but we will be paying for a larger portion than we anticipated. We should be finding out tomorrow exactly how much that will be. We feel it's worth the expense to keep Bodie away from germs and in a safe, private environment, but it means our expenses will be higher than anticipated. Any extra donations go a long way toward helping us with this! (And please remember that all donations are tax deductible, and many employers can match them!). Please share Bodie's COTA page and Bodie's story to help us with this!!!
  4. Safe travel for Dusk. Dusk will be flying up here Wednesday, to hopefully help us get settled into our post transplant housing. Please pray he is able to get his work out of the way before he leaves, and the animals will be well taken care of while he's up here.
  5. Discharge as planned. This is not our first time at the rodeo. We know not to count on discharge until we're walking out of the building. So I'm trying to manage expectations and not get our hopes up too much about discharge. But please pray that I'm pleasantly surprised and everything goes as planned! Bodie still fatigues easily, but really is starting to feel better. As he's feeling better, he's getting more and more antsy to get out of the hospital and get on with his summer. The hospital is nowhere for any kid to spend a long time, and an active 14 year old boy is no exception to that rule. Please pray we can get out of here as planned this week!
  6. Our donor family. As much as I complain about being stuck in the hospital, I am reminded that Bodie's honor family has it so much harder right now, and I'm certain would give anything to be stuck in the hospital, if only it meant their loved one was still here. Every time you think of Bodie and pray for him, please, please also pray for the family of his donor. Because of their selflessness and courage, Bodie has been given a new chance at life. A chance he never would have had otherwise. And for that, we are profoundly grateful and tied to this family we don't even know.

Sunday, July 7, 2024

How Can We Help?

So many have asked how to help us during this time, and we're so grateful for the offers of assistance! We have ourselves organized and are now thrilled to announce that we have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider making a donation to COTA in Bodie’s honor right through this link – truly, anything helps! 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of patients helps meet transplant-related expenses. COTA’s services are free to their families, and gifts to COTA are tax deductible to the fullest extent of the law!

You can also link to the website using following QR Code:
Please click on the link to learn how to help, and to watch the most amazing video generously created by our dear friend David Schumann! We're so grateful! ❤

Wednesday, July 3, 2024

You win some, you lose some

Bodie has had some REALLY eventful days recently.

In the last 2 days, Bodie has come off of both oxygen and Dopamine! Respiratory wise and cardiac wise, he has handled both weans like a champ, and was clearly ready to come off both! This was huge, because it has given us SO much more freedom to take walks both on and off the unit, and even go outside to the gardens! I'm really starting to see a lot of Bodie's personality coming back, which been such a blessing.
Today, he also had the stitches on his neck (from the vein reconstruction they did after removing the Ecmo cannulas) removed, as well as the stitches on his chest tube sites and the staples over his pacemaker removal site. His skin is healing so well! The last thing he'll still need removed are the staples over his chest incision (which should happen during his cath next Friday). 

Our buddy Maceo, who just transplanted 8 months ago, happened to be here for a clinic appointment with his incredible mom Monique, and younger sisters. It was such a blessing to have Maceo come upstairs and spend some time with Bodie. There's nothing quite like sitting with someone who can say "I've been there. It gets better."

The BAD.
But the gains haven't come in isolation, unfortunately.
The two biggest issues we're continuing to battle are sleep and feeding.

The kid isn't sleeping.
I mean, maybe he'll get a 2 hour stretch at night.
But otherwise, it's 30 minutes here or there.
And it's not for lack of effort - both on my part and his.
We're doing relaxing baths before bed, running calms scents in the diffuser, relaxing music, lights off, etc. 

Nothing is helping.
He'll fall asleep easily, but then pops back up 90 minutes to 2 hours later, and then is up and down for the night.

Last night, they tried a new sleep medication which caused him to talk gibberish the entire night (which was actually hysterical but for the fact that he was losing sleep - he wanted us to get the (nonexistent) rabbits out of his bed, pop the balloons on the (also non-existent) balloon cake, and at one time, he even farted, noticed the smell, and then turned to me dead serious to ask irately if I had farted!). Needless to say, we won't be using that medication again. 

So tonight we're trying another new medication to help him sleep. But the lack of sleep is so frustrating, both for him and the medical team. He's progressing as well as he can in his PT and OT, but he's honestly just so exhausted that it makes it hard.

Which brings me to the next biggest issue...

He's still not making much noise, so we know there's definitely some dysfunction in his vocal cord(s) and/or the surrounding tissues. He's now been scoped by ENT 3 times and failed 2 swallow studies. All studies show that there is no movement in either vocal cord, and his swallowing isn't yet coordinated enough to safely eat or drink without risk of aspiration. Yesterday, they cleared him to have small sips of water 5 times a day, and pureed foods (like applesauce and pudding) 3 times a day. He was so excited to get to eat for the first time in 3 weeks! I was excited for him, too -but still a little heartbroken. Progress is progress, but even so, this is what he's allowed to eat and drink.
Looks like a lot, right?

Until you pan out and see the cup size relative to the container of pudding to begin with.
Today when the new swallow study showed he was silently aspirating, I honestly couldn't help myself. The tears started. It's so hard. I'm trying so hard to be strong for Bodie, but my emotions are so close to the surface that it's hard not to let them spill over. 

I know either his vocal cords will heal or they'll do injections to help them along, that we'll get this figured out eventually. 
But it's so hard in the meantime. 
It is just so demoralizing on so many levels.
It's so hard to keep his spirits up in the hospital when he can't eat or drink anything. 

And we appear to be dealing with something more this time around, in that it's the actual swallowing function that he needs to do some rehab on. With silent aspiration, the swallowing function just isn't coordinated enough to protect the airway, and the body isn't realizing it. The ENT team feels pretty strongly that it's probably just too soon post op for him to have that coordinated yet, and in their experience, the swallowing function is the last to return after surgery. Given his overall body deconditioning that's happened as a result of Ecmo and the transplant, it's not surprising that his vocal cords and surrounding muscles aren't back and working properly yet either.

So, this is where we need your prayers something fierce.

Your prayers have reached far and wide and have brought Bodie so far in this journey.

Please please pray hard for him now.
Pray for his vocal cords to heal, and for his body to coordinate the swallowing.
He's a 14 year old boy who just wants to eat and drink his favorite foods! 
Please, please pray that this heals quickly so he can get back to eating and drinking as soon as possible! 

Please also pray that he can finally get some sleep.
His body needs it.
His mind needs it.
His mother needs it.
Just, please pray for restful and rejuvenating sleep for Bodie. 
It is incredible the recovery he's made given how little sleep he's getting. But I can't feel like his recovery would be so much quicker if he can start getting good sleep.
Please pray we figure out the sleep issue for him tonight! 

So that's it - pray for feeding and eating! Please, please, please! 


Saturday, June 29, 2024

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.

Thursday, June 27, 2024

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. 

Wednesday, June 26, 2024

The Heart of a Warrior

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

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

So we ARE making progress.

It's just slower than we'd like.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So is it any surprise that he looks like this?

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

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

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

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

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

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

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

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

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

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

For prayer requests tonight, we do have a few:

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

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

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

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

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

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


Sunday, June 23, 2024

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 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
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!

Thursday, June 20, 2024

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.