Stealing back our moments

Bodie had his 4 month transplant clinic appointment at Stanford this morning, complete with an echo, blood draw, visits with multiple practitioners and a flu shot. Thankfully, all looks great and this heart really seems to like its new home with Bodie!

He even got approval to have his 5 month appointment be done virtually, which means we don’t have to come back up until December! (The transplant team at LPCH is going to try and coordinate for him to have an echo done in November at Rady’s, which will give us a great opportunity to meet the team down in San Diego. Although LPCH will continue to be our main transplant care center, we will be switching from CHLA to Rady’s for any local care needs. We’ll miss CHLA so much, but Rady’s is so much closer and it just makes more sense for where Bodie’s at in his journey.)

Bodie’s appointments were done by late morning, but our scheduled flight back wasn’t until this evening. So we took the opportunity to regain one of what I have dubbed our “stolen moments” from this past summer.

When we came up here in June for what we thought were just 2 days of routine appointments at Stanford, I had planned a mini vacation out of it. I had purchased tickets to the Winchester Mystery House and Alcatraz, and we were so excited. We obviously didn’t end up doing either of those things, and both of the organizations were so kind and refunded me the ticket price with no issues whatsover. We were so grateful.

So when we unexpectedly found ourselves with free time today, I could think of no more fitting thing to do than go to the Winchester Mystery House.

The visit was SO fun and Bodie had a blast. It was especially fun because it’s Halloween season, so there are lots of extra decorations out to make it even more eerie.

For Bodie, a horror aficionado, it was a fun afternoon of delving into his favorite subject.

For me, it was so much more.

It was the culmination of a moment I wasn’t certain would ever come.

It may have taken us 4 months to get here. But man, was it worth every moment.

Alcatraz, get ready – we’re coming for you next.

(Ok, not quite yet. Because we’re currently stuck in a hotel by the San Jose airport. Apparently it’s foggy in San Diego, so flights were canceled left and right tonight. After delay after delay, then cancellations of all but the last flight out, we just asked them to put us on a flight tomorrow morning. Hoping the fog has cleared by then. But in the grand scheme of things, I’m ok with a little fog. After all, that’s just a little inconvenience. If that’s what keeps us up here, and not Bodie’s health, I’ll take that any day!)

Thank you SO MUCH for your continued prayers for Bodie! It’s only because of them that he is doing as well as he is. We are so grateful for the army of warriors praying for our sweet boy!

And as you’re remembering Bodie in your prayers, will you also please pray for our friend Alex? Bodie and I met Alex and his dear mom in the teen playroom (when Alex’s mom had dragged Alex and I had dragged Bodie to the teen room for arts and crafts). Alex had a heart and liver transplant 2 months ago and has faced hurdle after hurdle in his recovery. His body needs a break and he deserves to enjoy life with these beautiful new organs. Please blanket him in prayer – for strength for his body, for wisdom for the doctors, and peace for his mama.

Settling in

Bodie and I have now been home a little over 2 weeks, and we’re still settling in. I’m still finding boxes that never got unpacked – and still trying to find things that were moved while Bodie and I were gone (and no one seems to know where they moved them to!). We’re so grateful to be home though!

First off, Bodie is doing great! We continue to see increases in his stamina, and even his friends have noticed his increased energy levels! We’ve been doing regular lab work and had a remote appointment with his transplant team last week. We made some tweaks on meds, but from the outside, everything looks pretty good, thankfully. We go up to Stanford the week after this for an echo and in person clinic appointment, so we’ll know for sure then. But things look good for now!

He’s settling into school, but we don’t yet have routines set in place. His first day of school was rough, because I inadvertently gave him food poisoning. (No, I’m not proud!) I accidentally grabbed an expired bottle of Almond Milk to make his pasta (yes he eats pasta for breakfast). It smelled fine, so we didn’t know any different. But when I picked him up from school and realized that he had thrown up 4 times at school (but hadn’t told his teachers, so they just thought he had to got o the bathroom a lot), let’s say my spidey senses were on high alert. You never want a transplant kiddo to start vomiting suddenly. He spent the better part of that afternoon and evening throwing up. And I spent the better of my evening watching him and talking to his transplant team to determine whether an ER trip was warranted. Thankfully, he hung in there and was back to baseline by the next morning, back to school the day after that! Nothing like being thrown into the fire of school with a transplant kid! Suffice it to say, we all learned our lesson (Bodie learned that he needs to tell his teachers if he’s throwing up, and I learned to always double check the food I’m making him!).

Other than that hiccup, school is going well and Bodie’s working hard to get completely caught up. I think he’s ready to be on campus 4 days a week (full time at his school), but our agreement with the school was 2 days on campus with the remainder at home for the first semester. We figured he’d need a little more time to settle back in.

Speaking of settling in, I keep trying to figure out why it’s so hard for me to get everything done that I need to get done.

And then I looked at my schedule and realized that in the 2 weeks since we got home, in addition to Bodie’s schoolwork and my client work, Bodie and I had a combined 5 doctors appointments, 2 lab draws, 2 therapy sessions and 2 meetings at school. And a super successful 2 day yard sale spearheaded by our dear friend Francesca to raise money for our COTA fund!

In addition, Sierra’s sweet 6 month old kitten Toulouse was just diagnosed with Feline Infectious Peritonitis (FIP). FIP is an aberrant immune response in cats to infection with feline coronavirus. Without treatment it is universally fatal in days to weeks. The good news is, the FDA approved a drug to treat FIP just this past June, enabling us to get treatment for him without resorting to back alley drug deals. The bad news is that the medication isn’t cheap (but thankfully much cheaper than surgery!). We started injections yesterday and he’ll be on daily injections or pills for the next 12 weeks, then will be on observation for 12 weeks after that. We got him for Sierra the day before Bodie and I headed up to Stanford in June, and in many ways he was Sierra’s emotional support animal this summer. He is the sweetest, snuggliest cat we’ve ever had. We all love him and would hate to lose him.

Anyone want to guess who’s in charge of obtaining and giving the injections?!? Hint – she’s one the one typing the blog entry!

So yeah. That could possibly be why I’m not getting anything done. But in the grand scheme of things, I’ll take it! Because it all means we’re home and settling in. More or less.

Bodie and Sierra had their Homecoming dance last night. In true Bodie fashion, he wasn’t very interested in giving me any pictures. This one at the top and this pic were the best I got.

Bodie went with one of his buddies, and Sierra went with several different groups of friends. It was so special to have them be able to share their Homecoming Dance with each other. At least I thought it was.

Turns out, neither kid particularly appreciated the specialness of the moment.

Especially Bodie.

With a fair amount of wrangling and a lot of bribery and threats, the kids managed to take one good pic to send to me.

And because SIerra is a teenage girl living her best life doing allllll the things (musical theatre, ASB, rowdy crowd at the games – you name it she’s all in and loving every minute!) she did send me a bunch of really good pics. I just love how radiant she looks even after the crazy last few months!

Even amidst of the overwhelm of our life at the moment, I am always reminded of how lucky we are to be in this season, where we are all home and TOGETHER. I think often of our friends who are not that lucky. Friends in the hospital still waiting for their miracle hearts to come, friends holding vigil bedside as their children fight through unexpected obstacles in recovery from their transplants, friends whose children are further out and suddenly fighting again. I KNOW HOW BLESSED WE ARE.

Thank you so much for all of your continued prayers for Bodie and for our family! We covet your prayers for continued peace in this time of transition back home, for our sweet kitty Toulouse, for Bodie’s appointments next week to go well, and finally, always, for our donor family. Without them, none of this would be possible.

High School here we come

This morning, 3 months and 3 days after receiving a brand new heart, Bodie returned to school in person!

We are so blessed to have a wonderful school with a variety of schooling options, allowing him to be on campus 2 days a week until January, when he’ll transition back to full time on campus.

He’s been working remotely since school started in mid August, but today he was finally able to go to classes in person.

It’s so hard to believe he’s really starting high school! A moment I’ve never dared to dream off all the years in and out of the hospital, and most especially this past June as he lay fighting for his life.

We are forever grateful to the donor family who made this moment possible, and all of the milestones still yet to come.

All possible because of organ donation.

There’s no place like home

On June 3rd, we left San Diego for what we thought would be a quick trip to Stanford for a handful of routine visits.

101 days, 42 nights in the hospital, 7 days on Ecmo, countless procedures and a brand spanking new heart later, yesterday, we arrived HOME!

We left the hotel in Belmont Shores on Thursday, with our car loaded to the brim.

We drove 235 miles south to my parents’ place on the Central Coast, and spent the night with them.

It was so fun for them to see how great Bodie looked – and that, at a little over 5’7″ he’s now taller than Gigi!

We drove from there, home, stopping for lunch at our favorite spot in Santa Monica, the Annenberg Beach House.

(I used to take the kids there in the summer, so it was wonderful to have a moment to recapture a little bit of the summer we didn’t get to have!)

We arrived home Friday at 5:30 – the irony was not lost on me that Bodie, the lover of all things horror, arrived home on Friday the 13th!

The best part was coming home to Bodie’s best friends (and a couple of their amazing moms, my best friends, who orchestrated the whole thing)! They surprised him by hiding in his bedroom with balloons, flowers and an awesome Welcome Home sign!

The boys ended up staying all evening, catching up, eating pizza and swimming in the pool and jacuzzi. To get to see Bodie just melting right back into his friend group like he’d never left, like he hasn’t just had this crazy life saving summer, was just everything…

To say our animals were excited to see us was the understatement of the century. Bodie and I missed them SO MUCH! Maxi’s face says it all.

We are so beyond grateful to be home, and are so looking forward to this next stage of healing for Bodie! We cannot thank you enough for the prayers you have all covered Bodie with.

Please continue to pray for Bodie during this next stage of healing:

1. Please pray that his body continues to like his new heart. The scary thing about rejection is that it truly can happen at any time, without any symptoms. So please pray that his body continues to NOT reject and his follow up appointments all go well.
2. Please pray for his immune system. Bodie is and always will always be immuno-compromised. He will be on immunosuppressant meds for life to try to prevent rejection of his heart. This means that he’ll be more susceptible to catching germs, and is likely to get sicker when he does catch anything. His immune system is similar to that of someone going through chemo – but he looks really healthy from the outside, so it’s easy for people to dismiss it and think it’s ok to be around him if they’re sick. It’s 100% not ok to be around Bodie if you’ve been sick or around someone who is sick! This first cold and flu season will tell us a lot about how well his immune system can handle sickness. Some transplant patients more or less do ok with illness, and others end up in and out of the hospital with every sickness. We won’t know which camp Bodie will fall into until he starts being exposed to germs. Please pray that we can successfully prevent exposure to the most serious illnesses, and that he’ll handle the less serious ones ok.
3. Pray for back to school. The next big hurdle for Bodie will be transitioning back into school. He’s been doing his work remotely, but will be transitioning back to school on campus 2 days a week initially, and then full time next semester. Please pray his transition to high school goes well academically and that we can walk the fine line of allowing him to be as involved as he’d like on campus while still protecting him from germs.
4. Pray for the donor family. As we transition home, so full of hope and excitement for this next chapter in Bodie’s life, we know another family somewhere is still trying to transition to life without their loved one. Please continue to pray for grace and love for that family.

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.