From a father’s eyes

I have been so privileged to have had a front row seat to watching Bodie’s extraordinary healing over the past few weeks, but Dusk hadn’t gotten to see it. Words can only tell you so much. We were lucky enough to have him spend the last few days with us, and what follows are his words describing the experience…

But before we get to that, BIG news! As of last Monday, Bodie has been NG TUBE FREE!!!

Yes, you read that right! Today, I happily dropped off all of the remaining formula and tube supplies at the Ronald Mcdonald House for another family to get the benefit of!

(We had been holding this big news in because Bodie wanted to surprise Dusk with it when he got here – and surprise him he did!)

FROM DUSK…

It’s been a long summer. I think I can speak for the four of us and say we’re spent. What started as a simple trip to Stanford for cardiac follow up turned into a terrifying experience.

It’s safe to say we are officially on the other side of transplant. We owe a great deal of gratitude to the million+ who experienced Bodie’s procedure with us and prayed for him during his darkest moments. Bodie is doing remarkably well up here in Belmont and his recovery is nothing less than miraculous.

I flew up to spend a bit of time with them and let me be the first to tell you this kiddo has transformed. He wasn’t a strong kid to begin with and when I saw him last he could barely walk around the block so imagine my surprise when I walked over 8 MILES with him chasing Pokémon up and down the coast!

I kept asking him if he felt tired or out of breath and he said ‘No, but I can’t feel my legs or feet anymore.’ That was about mile 5ish. We just kept walking. It took us about 4 hours.

The next day, we caught a movie and then (expecting his muscles to be really sore) we went to Half Moon Bay to take it easy. He ended up walking in the surf for 4 miles before deciding to leave

Needless to say the nurse at his appointment this morning was just as surprised when she found out reiterating, ‘he walked it all at once?’ Yup.

In addition to looking great, having a real energy, weight gain, and his vocal paresis is starting to wear off, you can carry a conversation with him now. In fact, when I got off the plane he surprised me at the airport with a missing NG tube! He’s eating and drinking unregulated now. All of this a serious answer to prayer.

Next week the plan is to have his 3 month cath lab visit and if all goes well he will be discharged to home. Amy has already started plans to pack for imminent departure.

So, it seems likely they could be back home before next Saturday, putting an end to a very trying summer. Fingers crossed that he does well this week and comes in strong enough to fly through his Cath and IVIG treatment next week!

Have Tour Guide, will travel

Today, we were so blessed to have a very special friend in town, who gave us an insider’s tour of San Francisco! Bodie’s view of San Francisco this trip has been, let’s just say, not exactly Trip Advisor worthy. So it was such a treat to have Ramsey show us some fun places today!

We started by driving over the Golden Gate bridge…

And went from there into the sweet little town of Sausalito, where we beat the crowds and were able to eat lunch outside safely.

It was Bodie’s FIRST time eating out at a restaurant since his transplant! It was such a treat for him – and me!

We snapped a couple of pics of the water, then headed out very quickly once the crowds really started descending.

(We had Bodie wear a mask when we were walking around, but let him take it off for pics.)

After that, we were so lucky to get to pop over to a friend’s house to see a fellow HLHSer, Bennett!

(Bennett was headed out to a zombie themed birthday party – hence the super cool costume. But then again, me being a homeschool mom, I didn’t even bat an eye or notice until his mom pointed it out. Ha!)

His mom Kristen is one of our amazing Sisters by Heart Board members – and one of my favorite heart mamas!

Bodie was jonesing for some frozen yogurt, and Kristen let us know about a super cool local froyo spot we could check out. So we tried it out and let’s just say, Bodie was pretty satisfied. He did say he felt guilty cheating on Menchie’s (his absolute favorite froyo chain), but it was worth it. 😉

After that, Ramsey drove us all through the city, taking us on the steep streets and pointing out landmarks. It was such a blast!

Today was so wonderful, and it added such a sense of normalcy to an otherwise very tough and medically defined summer. We still have to be very careful with Bodie and germs, but it’s so incredible to be able to carve out experiences we CAN do safely! We’re so grateful for the gift of friends like Ramsey!

Best 3 days ever

Bodie has officially proclaimed the last 3 days the “Best 3 days ever.”

And with good reason.

This morning, he had his follow up appointment with ENT and Speech Therapy to look at his vocal cords and evaluate progress in swallowing. Although the scope itself was SO uncomfortable for Bodie, the results were fantastic! They were shocked to see the improvement in just a month!

He is now cleared to drink as much as he wants of all thickened liquids. We need to thicken to a Level 2, which is similar to a nectar consistency. It’s slightly thicker than water.

AND he’s cleared for even thin liquids, as long as I’m observing him, he sips (no gulping or choking) and takes it slowly! And he needs to make sure to give himself a break if he feels himself starting to aspirate.

This means, HE CAN DRINK DIET COKE! (He has to sip it slowly and make sure I’m observing, but even so, he gets to drink it again!)

(No, please don’t lecture me on the dangers of Diet Coke. Read the room peeps – not the time or place for that lecture. The boy loves himself some Diet Coke and has been so sad that he hasn’t been able to drink it. The smile on his face today was pretty epic!)

AND he can eat ice cream again! (Ice cream melts to a thin liquid, so as long as he wasn’t permitted thin liquids, he wasn’t allowed to eat ice cream.)

He celebrated by double fisting with Diet Coke and a McFlurry from McDonalds!

The best part is that his group of best buddies (we call them “The Quad Squad”) sent him a picture of them a few hours later, also double fisting sodas and McFlurries from McDonalds to celebrate Bodie!

I mean, how can you ask for better friends than this?!? Bodie misses them so much and can’t wait to get back home to be with them again!

The other reason the last 3 days have been so fantastic is that, in addition to the 3 miles he walked on Sunday night, last night we went on another walk. I let Bodie lead the way, and he chose several Pokémon routes. In the excitement of following the routes, we may or may not have totally gotten lost and ended up in the next town over! All told, we walked over 5 miles and he did AMAZING! He’s never been able to walk far like that before.

In a summer with a lot of rough moments, we’re so excited to have some really great ones to celebrate!

IVIG – the gift that keeps on giving

As predicted, Bodie’s IVIG (Intravenous Immunoglobulin treatment) last week did a number on him. A lot of kids (and adults) who have to go through IVIG treatment have a rough time with the side effects, which can include chills, fever, flushing, headache, nausea, vomiting, stomach pain, joint pain, low back pain, and tiredness. Sounds super fun, right?

The list of super fun symptoms can happen during or after treatment. In Bodie’s case, despite being premedicated with Benadryl and Tylenol, he tends to do fine during the infusion itself, but then has a delayed reaction where a day or so later, he starts feeling generally crappy – and stays that way for a good 2 or 3 days. So, true to form, Bodie was fine on Thursday when we got home, then woke up Friday feeling terrible. Spent all day Friday and Saturday feeling like he had the flu. It makes me so sad, because it always feels like a step back when he’s doing so well and then has to go through it all over again. I have to keep reminding myself that it’s just from the IVIG and he’ll be back to feeling better shortly.

Thankfully, he was feeling better by yesterday afternoon, and actually WANTED to take a walk last night! I was shocked – this is a kid who has never wanted to exercise, either before or after transplant. (Before he didn’t like to because his endurance was so low, and since transplant he hasn’t wanted to because, well, everything hurts and he’s still healing.) But he wanted to go Pokeman hunting – so we did. We started walking…and kept walking…and walking…we ended up walking over 3 miles!

He wanted to keep going, but I made him stop because it was late and he had early clinic appointments this morning. But he totally could have gone longer. He was so proud of himself!

The best part was when he said to me “You know, mom, it’s weird. Right now, my legs and my feet heart” (partly because he was walking in slides), “but my heart feels fine. Like it doesn’t hurt at all. You don’t get it because you weren’t in my body before. But it always felt like something was putting its arms around my chest and just squeezing really hard. There was always pressure. That’s why I was always out of breath and could never run around the house or anything.”

To hear him be able to voice that change was incredible for me. Totally made all of this hard work and rehabbing him worth it!

He had labs, an echo, ekg and clinic appointment this morning and everything looked great! Praise God!

As we keep moving forward in his healing, we still desperately covet prayer for the following:

1. Please please pray for his vocal cords. He has appointments with ENT and Speech Therapy tomorrow morning. This will be the first time we’ll get a look at his vocal cords since he was in the hospital. These appointments are really stressful for him, not to mention extremely uncomfortable. He SO wants to be able to drink again, and to get rid of the NG tube! We know it will be a process, but please please pray they see some improvement and he’s allowed to drink again! He’s still so quiet that we don’t know if they’ll see any change. But he’ll be so demoralized if that’s the case, PLEASE pray for healing of his vocal cords!
2. Please pray for his Donor Specific Antibodies to remain at 0. The IVIG is really hard on him, and he has to do it monthly until he gets 3 consecutive negative DSA blood tests. His bloodwork done in July was officially his first negative. They took blood before last week’s IVIG test, and we should get those results this week. Please pray that test will also be DSA negative. If it is, all he will need will be one more! That would mean his IVIG infusion in early September could be his last if that one turns up negative as well! Please, please pray the tests all show no DSA antibodies in his system.
3. Please continue to pray that Bodie stays healthy and his stamina continues to improve. We know he is only doing as well as he is because so so many of you are praying for him – please don’t let up now!
4. Please pray that we are able to work out the logistics of school and coming back home next month. We’re figuring it out, but there are a lot of moving pieces and it’s weighing heaving on my mind. Please just pray we work it out in the best way possible for Bodie and set him up for success in this coming school year.
5. As always, please continue to keep his precious donor family in your prayers. They are never far from my mind and we will forever be grateful for the gift they gave to our son amidst their darkest of hours.

Updates

I've had several people ask me lately for updates on Bodie, and I realized that not everyone has been following my blogposts over on Bodie's COTA website. Once Bodie was discharged from the hospital, I started blogging exclusively over on his COTA website, https://cota.org/cotaforbodie/, as that's our main fundraising platform and it was easiest to post updates there. But since not everyone is following there and I'll ultimately be having our Hope for Baby Bennett blogposts turned into photo albums, I've copied all of those posts over here as well. I will try to post both places during my weekly posts, but if I forget, you can always check his Cota site for updates! Thank you for your continued prayers! 

Owner of a Happy Heart

Originally posted on Bodie's COTA page on August 15, 2024.

Bodie had his 2 month cardiac catheterization and biopsy yesterday, followed by his 3rd 12 hour IVIG infusion, and it all went really well!

His pressures looked WONDERFUL! His pressures at his last cath (in mid July) were a little elevated. They weren’t high enough to warrant intervention, and they assumed it was likely because his heart was still settling. I’m thrilled to report that yesterday, they were WAY lower than the last cath! His Right Atrial pressure, for example, was at 14 a month ago, and now is down to a 3! The cath doctor was very happy with the results She said “he’ll be feeling a lot better now!” (Which I thought was odd since he actually seemed to be feeling pretty well going into the cath – but either way, it was music to my ears!)

His biopsy showed a 1A for rejection, which is perfect! That means some immune cells are there and happily coexisting with his new heart, but not feeling any sort of need to attack his heart. So his immunosuppressants are at a high enough level to ward off rejection, but not so low that his immune system is completely nonresponsive. Hopefully that means he’ll be able to handle colds and other illnesses circulating around. Only time will tell, and it can always change. But for now, we take it and rejoice. It’s the best possible news we could have received!

When he woke up from his cath, his first question was “Panda???” The kid was starving going into the cath. So they discharged us from the cath, he ate the Panda we had delivered, and then they checked him into the Short Stay Unit for his IVIG injection. He slept most of the afternoon into the early evening, woke up long enough to eat pizza from California Pizza Kitchen, and then slept most of the night.

He was done with the infusion at around 4am, but they let us stay to sleep a little longer before we discharged at 6:30am. I really appreciated not having to drive back to our hotel at 4am! Today, Bodie is tired, but managing ok. Hoping he recovers more quickly from this round of IVIG than the last!

Today my Facebook feed was filled with back to school pics and pics of fellow heart parents dropping their kiddos off at Camp del Corazon. Bodie was supposed to start High School today, and I was supposed to be dropping him off for Camp del Corazon next Friday. So, today is extra bittersweet for me. But if there ever was a reason to miss your first day of High School and camp, getting a brand new spanking heart is the best one I can think of!

Thank you so much for your continued prayers for Bodie! By all accounts, his body seems really happy with his new heart, and we know it’s due to all of your prayers! Please, please continue to pray for him. We covet your continued prayers for:

1. His heart to continue to thrive. He’s doing so well, but not out of the woods yet. We’re doing home planning with the team, but we have to get through his next cath and biospy (scheduled for Monday, September 9th). If those both go well, home should be very quickly thereafter! So please pray that Bodie continues to heal and accept this new heart.
2. His vocal cords to heal. This is currently his Achilles Heel. We are hearing some sound (we think), but it’s still very faint. We have appointments with the ENT and the Speech Therapist next Tuesday, and we should know more then. They’ll be scoping him to see if there’s any improvement in either his vocal cords and/or swallowing. Please please pray for significant improvement! We’ll be talking to them about things like additional vocal cord injections, likely trajectory of healing (i.e. if the NG tube is looking like a long haul thing, then we’ll be pushing for G-tube instead, etc.), potential surgical options, etc. So lots riding on that appointment and we appreciate your prayers.
3. That both Bodie and Sierra transition back into school well. Today was Sierra’s first day of her Senior Year (it’s killing me that I’m not there!) and was supposed to be Bodie’s first day of his Freshman Year. We’re working with his Academic Advisor and Counselor to best help Bodie do classes remotely for now, with the goal to transition to on campus 2 days a week once we return, and full time on campus by January. But we don’t have any books or materials yet, so he’ll be starting a few days late. Please pray we can easily keep him caught up in school – and that Sierra has an amazing Senior Year!
4. Please continue your prayers for the donor family. Because we don’t know anything about our donor, we have no idea whether the donor was a child (with parents mourning the start of a new school year without them), or a parent (with children now facing starting school missing a parent), or maybe a teacher whose students are missing them. But it’s very likely the start of the school year is bringing extra levels of sadness and loss to Bodie’s donor family in one way or another. So please, please pray for extra grace and comfort for them today.

Pushing his boundaries

Originally posted on Bodie's COTA page on August 6, 2024.

I am so stinking proud of this kid! He’s doing so great! He had a clinic visit this morning, and all of his labs and echo looked great. He even gained 3 pounds since his appointment last week! He’s actually gained 8 pounds since being discharged from the hospital less than a month ago! He’s now 5’6″ and 104 pounds! We even dropped one of his formula feeds a few days ago, so he’s down to just one formula feed through his NG tube in the mornings and then all of his other calories are coming from him eating by mouth! (The NG tube will be around for awhile to help with hydration, but it’s so great he’s not relying on it for nutrition as much!)

In the newly transplanted world, the two biggest sins are to lose weight too fast and to gain weight too fast. Gaining weight too fast can be a sign of heart dysfunction rather than true nutritional growth. Usually you can see some degree of that either on the echo (his looked great) or on physical exam (fluid overload can show up as puffiness – but he looked great on exam as well). But these cardiac kids are tricky and they can hide fluid. So the definitive test is the cardiac cath. Luckily, he already has that scheduled for this Wednesday.

We’re hopeful based on how well he’s eating and how great his endurance is that everything will look good. But we covet your prayers that his cath goes well, his pressures look good and the biospy results will be negative for rejection.

After his cath on Wedneday, he will have a 12 hour IVIG injection to help reduce his Donor Specific Antibodies. He will have those monthly until he gets 3 negative DSA test results. His last IVIG treatment knocked him out and his energy wasn’t fully back up for 4 days. Please pray this treatment goes smoothly and he recovers more quickly this time.

In the past couple of weeks, his endurance has grown in leaps and bounds and it’s been awesome to witness! He’s still not at 100%, but it does feel like he’s really healing! We’ve taken advantage of it to start exploring some.

Last Friday, we drove out to Half Moon Bay and walked down to the beach.

(Yes, that is Bodie sporting my awesome Sisters by Heart sweatshirt!)

The access paths down to the beach were a bit steep, and Bodie did great going both up and down! And once we were done, he waded into the water. He commented that the water was cold but “bearable” (something he’d never been able to say before, as his lower profusion made his hands and feet particularly sensitive to really cold temperatures). We even managed to be there at the right time to watch sea lions playing in the surf!

On Saturday, we drove to the other side of the bay and Bodie walked up a really steep incline to see the nice view of the bay (he REALLY didn’t want to do it, but his body handled it way better than I expected!). I was really proud of him! It’s kind of hard to get a sense of how steep it was, but you can kind of tell in the second picture, by how far away the cars are.

And yesterday, we went to the car wash. We found a DIY carwash and really gave the van a good cleaning. (It was all Bodie’s idea! The car was so filthy and he was pretty embarrassed to be seen in it. Back home, in the country, everyone’s cars are dusty and dirty, so ours fit in a bit better. But up here in the city, everyone’s cars are so nice and shiny all the time – our van definitely stuck out like a sore thumb!) I was so impressed with how much energy he had to help was the car. The power sprayers were fairly heavy and a bit unwieldy, but he did great!

(I’m sad to say the carwash didn’t remove the dent or duct tape from the side of the car, but at least all the bird poop is gone!)

It’s been such an answer to prayer to watch Bodie’s spirits improve and him to continue to heal! It is never lost on me how different our outcome could have been, or how things can still change very quickly. Although Bodie is looking really good from the outside, he is still very much in the riskiest stage of recovery (the first 3 months post transplant, where rejection risk is the highest). And rejection doesn’t always come with any warning signs. So please, please continue to pray for Bodie as we head into his cath, biopsy and IVIG this week,

This week is a big week, and there’s a lot riding on it. Please, please continue to pray for Bodie’s safety and healing during his procedures this week. And as you are praying for Bodie, please also pray for his generous donor family. As we get ready to celebrate another milestone with this new heart, another family is mourning another milestone lost with their precious loved one. Please, please pray for extra comfort and grace for them this week.

Blood is thicker than water

Originally posted on Bodie's COTA page on August 6, 2024.

After not seeing each other since the beginning of June, these two kiddos got to spend this past weekend together!

We are so beyond grateful for my dear friend Amy, who generously donated frequent flier miles so that we were able to get Sierra up here. The weekend was so very needed!

Sierra flew up early Friday morning and just flew back home tonight. It was balm for my weary mama soul to have my babies together again.

This past weekend, we took walks (and breaks) together

We went to the movies! (I can’t believe our team okay’ed it, but they said as long as we went during the day and it wasn’t crowded, it would be ok – so we went at 10am on Sunday morning and the theatre was almost completely empty!) It was so fun to feel normal again.

We helped Bodie sort through all of the Amazon packages he received – thank you so much to all of you who purchased items off of his wish list! He is one very loved and lucky boy! He even let us help him build the Lego sets (a little).

Because she is an awesome big sister, she dyed Bodie’s hair last night. He was so excited.

Today, Bodie had a clinic appointment and labs, and Sierra was able to come along with us. I loved having her there to meet Bodie’s doctors and to hear what they had to say.

Bodie is still trucking along and things continue to look good. We dropped his midday dose of diuretics, went down on his Tacrolimus (one of his antirejection meds) and up on his Magnesium. Small tweaks to hopefully keep him in this good space. He was scheduled for his 8 week biopsy and cath this week but ended up being bumped to next week to accommodate scheduling. It’s nice to be stable enough that he can wait an extra week!

I was so sad to drop Sierra off at the airport tonight. I suppose it’s good practice for when she goes off to college, but I’m not quite ready for that yet! I cannot wait until we’re all back home together under the same roof!

In the meantime, we’ll hold on for hugs just a little bit longer.

Please continue to pray for Bodie and our entire family during this long recovery phase. Bodie is getting stronger by the day, but it’s still such a process. He’s still aways from being at 100%. We just have to take it day by day. Please pray that his strength continues to improve – and that his vocal cords heal!!!