Saturday, September 16, 2017

When time is the biggest blessing you can hope for

As I mentioned earlier this summer, we would be going to Stanford for a transplant opinion. We had that evaluation done last month. 

Let me back up for a second. A lot of friends have been asking why we were going to Stanford when Bodie's care has been provided at CHLA up to this point. The answer is that we're not certain yet where Bodie's next steps will be taken - and we covet your prayers during the process of figuring that out. 

CHLA has taken such good care of Bodie and we are reluctant to leave. And CHLA does have a great pediatric  heart transplant program. However, there are a few things about Bodie's situation that will make his transplant journey more complicated (namely, his high level of antibodies and his size). Both of those factors will likely translate to a long waiting time for his perfect heart, which means we will need to be at a center that is both 1) good at managing antibodies as well as possible to reduce risk of rejection, and 2) good at bridging single ventricle kids to transplant, something most centers are woefully unprepared to do (not by fault of their own - there simply aren't a lot of good options for kids like Bodie - actually, there aren't any "good" options, only "less bad" options - options which will allow his organs to remain stable while waiting for a heart). In any case, Stanford happens to be at the cutting edge of both of those areas. Which is what led us to LPCH for a second opinion. 

This does NOT mean we will necessarily go to LPCH for Bodie's heart transplant. But we might. If we do, we will remain in Los Angeles as long as possible - until Bodie becomes sick enough to go inpatient, which hopefully will not be for quite awhile. At that point, Bodie and I (and Sierra at some point) would go to Palo Alto for this next step in Bodie's journey, while Dusk would remain in LA. But hopefully, these conversations are still a ways off.

Which brings me to Stanford. After reviewing Bodie's records and labs and fully evaluating him, they do NOT recommend listing him at this time! Put simply, he is on a positive trajectory (bloodworkd and symptom wise, he has only gotten better since his heart failure started last year), and they generally do not list kids when they are on a positive trajectory. At this point, the risk of a heart transplant is greater than the risk of remaining with his heart as it is.

This is great news. 
It is an absolute answer to prayer.
To be clear, it is the BEST possible news we could have received.

However, it does not take transplant off the table. 
Not even remotely. 
No one is expecting his heart to get any better. We all expect it to get worse, and at some point, it will weaken to the point where he will need to be listed for a new heart.  That could happen next month, or 6 months from now, or maybe a year or two from now. No one expects it to be much further out from that, but honestly, no one has a crystal ball. Bodie has surprised us all before, and he may very well do so again. A miracle is not outside the realm of possibility, given the sheer number of miracles we have already seen with this sweet kid.

We will continue to see our team here at CHLA every 3 months, and the team at LPCH every 6 months, unless things change. 

So where does this leave us? 
Living our lives.
Living the crap out of them. 
While we can.
Because we have been given this gift of more time. 
Time where our family is together. Time where Bodie's symptoms are managed well by meds. Time where can be a regular 7 year old playing soccer and doing his homework and complaining about doing chores. 

To that end, we took a trip to Disneyland last week. A good friend generously gifted us tickets and we took the opportunity to use them the day before school started. We had a blast. Made lots of memories.

 We'll close with this pic.
Because the force is strong with this one. 
So very, very strong.
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Saturday, September 9, 2017

On Letting Go

Being so entrenched in the heart community, I have known about Camp del Corazon for years. It's a nonprofit here in Southern California that provides a week long summer camp on Catalina Island for children affected by heart disease. The camp is completely staffed by volunteer cardiologists, nurses and other cardiac practitioners. Kids can attend starting at age 7.

Earlier this year, Bodie mentioned to us that he wanted to go to camp this summer. Honestly, we looked at him like he had 2 heads. I mean, how can a 7-year old (who happens to be really clingy and loves his mama A looooooooooootttttt) really be ready go go away for 5 whole days? Not to mention a kid suddenly in heart failure and nowhere near stable enough for us to consider sending him anywhere away from us for any amount of time? 
So yeah, that was a hard NO from mom and dad.

But then, he became more stable.
And he became more insistent that he WAS ready. That he DID understand he'd be away from us for 5 days, and that we couldn't have any contact with him. And that he STILL wanted to go.

So Dusk and I thought about it. And we prayed about it. We were nowhere near ready for him to go. I mean, not at all. But we finally realized that if HE was ready to go, who are WE to stand in his way? So, in June, we applied for him to go to CDC and he was accepted. 

And this kid was SO right.
While I was a bundle of nerves the week before, wondering how on earth he <and I!> were going to handle it, he was cool as a cucumber. Packed his bag, hugged us, and took off. The kid barely looked back.
He was ready.

We were on pins and needles all week, wondering how he was doing. My sweet mom came down and we focused on Sierra, doing all sorts of fun things. It made the week fly, but we still missed Bodie like crazy!

When we went to pick him up, he gave me a huge hug and then promptly told me with a big smile "I hated it." 

Oh.

And then, he spent the next 6 hours telling us all the fantastic things he did at camp. And is still telling us stories, a week later! Archery, skits, swimming, kayaking, crafts. So much fun!

As it turns out, he had a great time. 
And he made some great friends, all of whom have heart defects - and some of whom are just as complex as Bodie! 
(His entire cabin was 7-year olds also at CDC for the first time - they were the cutest thing ever.)

And some of the most amazing counselors were there, including our beloved Brenda!!!
But he missed us. A lot. And wasn't afraid to let everyone know. 
This kid, with his big feelings, is still having a hard time working out how you can be homesick and have fun at the same time.

But he says he wants to go back next summer. I'm taking that as a win.

I am so glad we sent him.

It was so good for Dusk and I, to not be the ones solely responsible for meds and watching symptoms all week long.

It was so good for Sierra. 
Until the moment she started crying, worrying that "someone will give Bodie the wrong meds and he will die," I honestly did not realize how much she feels responsible for him. She loves him, but worries so much about him. That's such a burden for a 10-year old to carry. 
The week gave us a wonderful opportunity to talk through those feelings and just to focus on her.

And it was so good for Bodie, even if he was homesick.
He came back so much more confident.
One of the highlights of the week was climbing a rock wall. 
They have a giant rock wall at camp and it's sort of a thing to be able to climb to the top of it.
When Bodie told me it took him 3 attempts but he made it, I was proud. I mean, my kid climbed a rock wall. But I figured he would. I mean, we try not to let him use his heart as an excuse generally, so I figured camp would be no different.

So I asked a counselor about this climbing wall.  
And boy did she put it in perspective for me. 

"It's a HUGE deal for any of these kids to make it up a rock wall after having their chest cracked open and they essentially have no upper body/core strength. But then you come to Bodie, who's been cracked open in the front 5 times and once on his side/back...so the fact that this kid made it up is mind blowing!!! You have an incredible little boy!"

Yes, yes we do indeed. 
I am so glad we sent our sweet boy to camp this summer. 
I lost a piece of my heart for 5 days.
But his sweet, imperfect heart grew exponentially.
Thank you from the bottom of our hearts, Camp del Corazon.

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Friday, August 11, 2017

Full steam ahead

Bodie had appointments yesterday with his team at CHLA. We saw both his electrophsysiologist and his heart failure cardiologist.

From an electrophysiology standpoint, things have significantly improved.  Due to Bodie's sinus node dysfunction, his heart is generally doing 1 of 2 things - riding his pacemaker, or being in atrial tachycardia. Our goal is to get him to mostly being paced. At his last appointment, he was riding his pacemaker approximately 13% of the time. Thanks to adding a beta blocker, he is now riding his pacemaker 50% of the time. This is VERY good news. Being in tachycardia less is so much better for his heart.

From a heart failure standpoint, he is holding steady. His BNP (measure of heart inflammation) is continuing to trend downward, which is FANTASTIC. It is now down to 40, which is normal! His valve regurgitation has pretty much completely gone away. Both of these are good indicators that his heart is not as stressed by the dysfunction as it was earlier this year.

He's also finally growing, which is wonderful. He has struggled with growth courtesy of his heart failure. But he has grown an inch and gained 4 pounds since March, so we are thrilled!

But his heart function as a whole is...unchanged.
Unfreakingchanged.
Still barely moving at the bottom. 
Severe dysfunction. 
Barring a miracle, I think the chapter on his heart healing itself has closed. 

So the question then becomes, given how quickly he decompensated last Fall and the fact that we still aren't 100% certain on the etiology of that decompensation, how likely is it to happen again and how does that play into how soon do we list him for heart transplant? 
It is a balancing act, and we're not sure where we'll land just yet.

So we move full steam ahead to Stanford late next week for a transplant evaluation and then figure out where we go from there. We covet your prayers for that appointment. For wisdom, for clear decisions and for peace for all of us. We're starting to get to the tougher discussions and that's hard on all of us, not least of all, these two.
I still struggle to wrap my mind around the fact that we're having conversations about our 7-YEAR OLD having a heart transplant. The enormity of it overwhelms when I really let it sink in. I mean, is this seriously my life? 

But while it's hard for Dusk and I to wrap our minds around all of this uncertainty, we have a lifetime of experience to guide us. Our kids have 10 years and 7 years.
Nothing about this is easy.

Please pray as we move full steam ahead. 
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Saturday, July 29, 2017

Tahoe...the one where we LIVED.

13-day epic roadtrip. 
11 cities. 
Over 1,600 miles. 
Lots of laughs.
A few catfights 
(oh who am I kidding, a few full on WWF fights between the kids, if I'm being 100% honest here). 
But we survived - and were all still talking to each other by the end of it!

This trip was fueled by some serious emotions.
Because, here's the thing about raising a medically fragile child: you don't know what the future will bring.

Of course, nobody knows.
But we're just reminded of it every.single.time we look into this sweet face.

In a few weeks, we go to Stanford for a heart transplant evaluation.
We don't know what next summer will look like, whether Bodie will be in any position to travel.
Heck, we don't know what next month will bring.
So we throw ourselves into NOW, because that's what we got.

So, this trip...

We played in the snow at over 9,000ft
 
(well, if you're Dusk and Sierra, you played in the snow -  if you're the less adventurous type like Bodie and I, you sit at the bottom and watch Sierra slide down - I mean, we're living more in the moment now, but let's not get crazy here...)
 

We swam in a pool next to sharks (no pics of that - sorry!)

We hiked in the forest and in the meadows.
 
We (ok, Dusk and Bodie) spent hours building tree forts - and then swinging from the branches in said forts.
We ate s'mores with Popo Alan.
And braided our hair to match Grandma Jan.
 
We waded into the lake with our clothes on...because it was too warm and beautiful not to. 
We had too much sun, too much water, and ate too many s'mores (just kidding - no such thing!)
We rounded out our trip with time spent with our heart buddies at Camp Taylor

And at the Monterey Bay Aquarium.

An on our way home, we made an impulse stop to feed some ostriches and emus, because...why not? 
  

We came home exhausted and spent, with laundry for days. 
But it was worth it. 
It was all worth it. 
Even the WWF fights. 
Because we were LIVING. 
While this crazy journey we're on permits us to. 

This is one of my favorite pictures from the trip, of the kids and I at the wave wall (I'm sure that's totally the technical term for it) at the Monterey Bay Aquarium.  
It was hands down my most favorite place at the Aquarium (possibly because the sound drowned out all the other sensory overload the rest of the Aquarium had sent my way). And the kids loved, too - their looks of surprise and excitement were awesome. We just sat there for some time, letting the waves crash outside the glass surrounding us. 

Such an incredible reminder that, even in the midst of the waves crashing around us in our lives, of the walls crumbling down around us, there is always a sweet, quiet spot to be found. A spot to sit, to seek the beauty around us, and to just BE in God's presence. Such a powerful reminder as we go into the next phase of Bodie's medical journey.


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Thursday, June 15, 2017

Stable is as stable does.

The kiddos finished school yesterday, and kicked off the summer in style, with lunch with friends, swimming, s'mores and a late night movie in the first 24 hours alone...
and an echo, ekg and marathon appointment with the heart failure team.
(wait - you mean every kid doesn't start the summer that way???)
And can you believe this kid? Cool as a cucumber, just chilling watching a movie during his echo. SO mature today. Didn't even cry during his blood draw. 

The good news is that Bodie is stable, with maybe even a tiny improvement in his function. Although the improvement isn't super noticeable, his BNP (measure of heart failure) is continuing to drop, almost to normal levels (down to 94 - from 230 at his last appointment in March, and over 900 at its peak)! And the valve regurgitation we were seeing has slowly been improving on each echo, and is no longer even seen. All very good news and good indicators that his heart, despite severe dysfunction, is relatively happy with the cocktail of medications he's on. 

In other words, he is compensating well, both on the inside and the outside. His nausea has been kept fairly well at bay, thanks to changing the timing of his meds. And, other than his exercise intolerance, he's feeling pretty good these days, thankfully! It was nice to have the echo and bloodwork confirm what we've been seeing. 

However, we all know he cannot compensate forever. So we have been talking to UCLA, CHLA and Stanford about when to evaluate and ultimately list him for a heart transplant. He is compensating well enough that I don't believe anyone wants to list him yet; however, we want to have these discussions while he is doing relatively well and we have the luxury of time to research and make decisions regarding care. Nothing definitive yet, but we will likely be having more serious conversations about that this summer, including when to start actively treating the rather large number of antibodies he has (his specific antibodies as they currently stand are likely to make him reject a heart from a large portion of the population, so we have to be very intentional about how and when and where we choose to try to reduce them prior to listing him). 

These are conversations we knew were coming. 
Even so, conversations that make my brain - and my heart - hurt. 
Conversations no one wants to have about a loved one, especially your 7 year old. 
We covet your prayers as we have these discussions, and go through the process to determine which center will best meet Bodie's (and our entire family's) needs.

In the meantime, we are breathing a big sigh of relief that he is stable - and getting ready for some big summer plans. We were excited to get clearance today for our Tahoe trip, a trip to Florida for my parent's 50th wedding anniversary, and heart camp!

Maybe not the most typical way to start the summer.
But we'll take it. 
And we plan to spend this summer enjoying the heck out of it. 
If we have learned anything on this journey, it's that nothing is promised.
That rings especially true when you're gingerly stepping into a new path on the journey.
So we plan to take these moments while we have them.
Summer, here we come! 

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Thursday, June 8, 2017

The faces of resilience

So the kids' school had their annual awards ceremony this morning.

This kid got HONOR ROLL!!!
This kid has had one hell of a school year. 
He started the year 2 weeks out from heart surgery, and was in full blown sudden and severe heart failure by November. He spent the next few months in and out of the hospital and doctor's appointments, suffering from on and off heart failure induced nausea and exhaustion. And, although he has adjusted to his new normal, things are far from settled even now. And yet, still, in spite of the chaos and the uncertainty and the days he just didn't feel well, he pushed through and kept on his schoolwork the best he could. 
He earned honor roll today. 
That is nothing short of spectacular. 

But wait, there's MORE!

This girl cleaned up on the awards.
She ALSO earned HONOR ROLL!!! 
In a year where there was complete chaos in our lives and a home shrouded in worry, she dealt with her own diagnosis and new medications, and she pushed through and worked her little tail off. We seriously could not be prouder of this girl.
She ALSO earned a band award as well as her class 1st place spelling bee award. 

Both kids also earned church attendance (I love that our school recognizes how important church is to a child's upbringing and rewards families who place a priority on it!) and perfect punctuality (which really Dusk and I deserve as well, because it's freaking H.A.R.D. battling through traffic to get kids to school in LA on time!). 

Which brings me to the final picture.
Yes, our kids are awesome.
So awesome.
But let's be real. 
They didn't earn these awards on their own.
The mere fact that they earned any award other than "I made it to school some days, and occasionally even had my teeth brushed and shoes on when I got there" is a miracle given how rough our year has been. 

So, really, the awards belong to Dusk and me just as much.
(I'm not sure my favorite part of the picture - our expressions, the fact that it's blurry, or the American Girl dolls looking down over us!)

If all of our faces - Dusk's, mine, Sierra's and Bodie's - are not the faces of resilience, then I don't know what is. 

If there were an award for most resilient family, we'd have to be in the running. Just sayin. 
If you hear of one, feel free to nominate us. 
In the meantime, we'll be here rolling in the awards.
Because that's not weird.
Just resilient. 
Or at least that's what we're calling it. 

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Friday, May 12, 2017

But mama, do these laps count?

Today was the kids' school's annual FUNDrun. 
You know the thing some genius came up with once, where all the kids in school run for hours on end (or maybe it just seems like it?) and people sponsor them and the school makes money. 

Great idea.
Unless your child happens to have endurance issues, in which case, it becomes a day fraught with emotion and worry, and yet another reminder to your child of just how different he is.

I have been so nervous all week leading up to today.

Do I tell Bodie to take it easy? 
I don't want him to push his already extremely taxed heart past what it can currently handle (which isn't very much, if I'm being honest).
But what if he CAN actually do more, and I sell him short by telling him ahead of time to be ok with just walking?

Cue the big emotional "girl, you are seriously overthinking this, just tell him to HAVE FUN" speech.

So that's what we did. I told him to have fun. And that I would be proud of him no matter how far he ran. And I expected him to run maybe 10 laps (the average for most of the kids is 90-100).

He ran 3 laps. And noticed how he was immediately lapped by every freaking kid there (and probably would have been lapped by their pre-walking toddler siblings if they were actually allowed to participate). My heart broke and I had to hide my eyes filling with tears as I saw him come around to take a break, his face defeated, and sit next to me to cuddle. All I could think was please, dear God, let this thing be over soon.

But then a wonderful thing happened. 
The crowds thinned a bit.
Some of the kids started walking.
And suddenly, Bodie wasn't the only one going slower. 

And this kid got back up and started walking.
And I'll be darned if he didn't do 70 laps. 70 freaking laps, people. 
I did a few with him, and piggy-backed him for a handful of laps. 

During those laps, he asked me over my shoulder "but mama, do these laps count?" 

Oh sweet boy, you have half a heart and that half a heart is so tired right now. You just did 60 laps. Yes, buddy, these laps you're riding on my back ABSOFREAKINGLUTELY count.

I could not be more proud of this kid. Of his tenacity. Of his brave attitude. Of his smile. Of his lousy freaking half a heart. 

I tried to catch a picture of him running, but I wasn't successful. I, did, however, catch this one.

And these two, with his closest buddies before and after the race.
And one with this girl. 
Who, in her own right, made me incredibly proud. She ran over 100 laps. But she didn't do it in a race to run the most laps (she wasn't even close). She did it by holding hands with the younger kids, and checking to make sure they were ok and getting their laps crossed off. She got what it was all about.
 I love this boy. And I love his sister. 
Every day, they continue to teach me what life is about. 
And about how every lap counts.
Every.single.one.
Even the ones where you need a lift from someone who loves you. 
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