Life on the “outside”

Originally posted on Bodie's COTA page on July 30, 2024.

Bodie had a clinic appointment this morning, with an echo and labs. Thankfully, all continues to look great! He’s gained a little weight and we’re still on track for his 2 month cath and biopsy next Wednesday! Hard to believe next Friday he’ll be 8 weeks post transplant!

I used quotation marks to refer to the “outside” in my title.

Because we are definitely on the outside of the hospital, and for that, we are so incredibly grateful.

But yet we’re also outside of the real world.

While our friends post pictures of lying on sun kissed beaches in tropical destinations, and compare class schedules and go back to school shopping, we’re not quite there yet either.

We’re still very much inside our bubble of transplant recovery.

A world that moves very slowly.

A world that is measured in day by day improvements, no matter how marginal.

A world marked by forced daily walks…

And lots of rest breaks for Pokemon hunting (which Bodie has gotten Dusk hooked on!)…

And watching the local geese…

And seeing new flowers bloom…

And walking by the ocean.

A world revolving around medications and feeds.

So many medications.

Bodie’s currently on 13 medications, only 2 of which he was on when he walked into the hospital last month.

4 of them are twice a day meds. 2 are three times a day. 3 are morning only. 4 are evening only. 1 is afternoon only. 7 are in liquid suspension form already. 1 of those has to be refrigerated and another cannot be exposed to sunlight. 4 of them have to be crushed in syringes and be drawn up with water. 1 med is so big it needs to be crushed in a separate pill crusher before being drawn into the syringe. 1 comes in capsule form only, so has to be opened and sprinkled over a tablespoon of applesauce. 1 has to be poured into a medicine cup and applied with a sponge to the inside of Bodie’s mouth.

In addition to his medications and the meals he eats by mouth, he has 2-3 bolus feeds a day of formula, and 2-3 additional boluses of water, all through his NG tube. His feeds have to be measured out, and have to be preceded and followed by water flushes. The feed bag has to be primed before each feed, and washed out between feeds.

In the midst of all of this, I am tracking his fluid and calorie intake (goals of 2,000ml and 2,700 calories, respectively).

It’s just…a lot. Even for an experienced heart mom and a kid who’s been on meds his entire life, it’s a lot. I have my schedules and apps on my phone, but even so, it’s…just…a…lot.

My fellow transplant moms had warned me, but I had hoped it wouldn’t be such an adjustment for us, since we’ve been at this medically fragile kid thing for over a decade now. Turns out, they were right. It’s been an adjustment.

So while we’re on the outside of the hospital, we’re also still on the outside of regular life. Turns out, the world around you doesn’t stop spinning just because your life has stopped momentarily. I know, I know – how rude, right? But apparently it’s true!

We’ll get back to the inside soon. But for now, we just keep revolving here. Loving on our boy and getting him through this recovery. As he told me last week “You know mom, this has been the worst summer ever…in the short term. But in the long term, it’s going to be the best summer ever.”

Amen, Bodie. Amen.

Slow and Steady

Originally posted on Bodie's COTA page on July 25, 2024

Bodie’s medical team keeps reminding us that transplant recovery is a slow and steady process. That as long as he makes a little progress from one day to the next, they’re happy.

But if you know me, and you know our family, we don’t do slow. Sometimes we do steady. But we definitely don’t do slow.

Well, except for Turtelina, Bodie’s pet turtle. And heck, even she runs surprisingly fast when she’s trying to get away from you.

For 25 years, Dusk has been telling me to use “slower, more calculated movements” (usually when it’s because I’m hopping around the room in agony because I was walking too fast and stubbed my toe on something I never saw coming).

I have perpetual bruises on my shoulders for turning corners too fast and nicking the edge of the wall with my shoulder.

So no, slow isn’t really in my vernacular.

Or in Bodie’s.

With the exception of his Norwood surgery, he has always sped through recovery faster than expected.

So we’re used to being given estimates of healing time and watching Bodie blow right through them, much to everyone’s surprise.

But heart transplant is a whole new ball game.

His medical team has told us to expect a year for full recovery.

Needless to say, God is teaching us patience.

This entire hospitalization and recovery is about patience.

So using that as our litmus test, at a week out of the hospital, Bodie is right where he should be.

Dusk has been up and it has been so wonderful for both Bodie and I to have him here.

We are forcing Bodie to take two walks daily, as well as doing the stairs at the hotel at least once.

Bodie hates it. Takes breaks whether or not he needs them. And negotiates consistently.

But we’ve finally agreed that he has to do one lap around the pond here, and one set of stairs, twice a day. Every additional lap and set of stairs we will pay him $1 for (and his uncle Paul has agreed to match it!). As motivated as he is to earn money, his body isn’t quite ready for the challenge yet. So no money has been earned yet. But hopefully soon!

And I try to focus on the positives where I can. Like this flower. That wasn’t blooming yesterday. And greeted us on our walk today. Little changes, day by day. Much like Bodie.

He has had two clinic appointments at the hospital so far, and both have gone well. His labs all look good and his echoes continue to look stable, which is wonderful.

He had his last of bi-weekly IVIG infusions in the short stay unit of the hospital overnight on Monday night. It definitely took a lot out of him, and he was pretty exhausted yesterday. But we’re hopeful he’ll be feeling better today. He won’t have another one of those for a month, thankfully.

The rebuilding of the physical stamina is no joke. Things that were easy for him before aren’t even a possibility yet. He tires out sitting in the car for 15 minutes. Or sitting on the floor to build Legos for a half an hour. We do a lot of relaxing in bed and watching TV in between spurts of activity.

The biggest issue he continues to face besides rebuilding his strength and stamina is healing of his vocal cord and coordination of his swallowing. He’s eating two really good meals a day, so we’ve been able to get rid of 2 of his tube feeds. But because he can’t have any liquids by mouth (he’s even aspirating thickened liquids), I replaced those formula feeds with water. Our hope is that he’ll continue to take more and more by mouth so that we can just use the tube for hydration and meds, and eventually get rid of it entirely.

Please continue to pray for Bodie. It’s so easy to think that since he’s out of the hospital, he doesn’t need your prayers any more. But that couldn’t be further from the truth. Even, as a family who is no stranger to open-heart surgery recovery, this process has shocked us.

We covet your prayers for the following:

1. Please pray that he continues to regain his strength.
2. Please pray that his vocal cords and swallowing muscles return and strengthen so that his voice comes back and we can get rid of the feeding tube.
3. Please pray for patience for all of us as we come alongside Bodie and support him in his healing. Bodie is a very headstrong kiddo, which we’re very grateful for! But that means it’s often hard for Dusk and I to know where to strike that fine line between pushing him hard enough without pushing him too hard in his recovery. Pray for grace for all of us as we continue to dance around that line.
4. Please pray for grace for all for four of us in communicating with each other. It’s hard having the family split and the cracks show more often than we’d like to admit. We’re doing the best we can, but it’s not how a family should function, You can only live in survival mode for so long. We’re all tired and worried and frustrated. We know this is only for a season, but even so, it’s hard in the midst of the season.
5. Please pray for continued generosity from donors. We are so beyond grateful for all of the meal cards and donations to COTA received, particularly as I’m beginning to sift through the hospital and insurance bills. Please continue to share Bodie’s miraculous journey with others you think would like to pray for him and support the COTA for Bodie campaign financially.
6. Finally, please pray for Bodie’s donor family. As I get frustrated with the slow rate of healing and the daunting year ahead of us, I often think of the donor family and how incredibly grateful we are for them. We wouldn’t have the privilege of being frustrated or worried or scared without their selfless gift. I hope some day we can thank them and make them proud through the life of our son.

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.

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!!!

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.

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! ❤

You win some, you lose some

Bodie has had some REALLY eventful days recently.

THE GOOD.

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.

SLEEP.

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...

FEEDING.

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!