Thursday, March 22, 2018

Just so we're all on the same page...

So, we have this family friend. This guy who is at our home almost weekly. In LA, that sort of makes you like inner-inner-inner you know all our secrets sanctum. So, this dude knows us and the kids reallllllly well. And we all love him. Anyway, he was over last weekend and says to Dusk "So, like, Bodie's done with all his surgeries and stuff, right?" 

For reals, guys. 

I'm pretty sure my head started spinning. Like straight out of exorcist spinning. 

I mean, how can someone who knows Bodie so well not understand the gravity of his situation?

After I picked my jaw up off the floor and my head stopped spinning, we sat down and explained that no, he is not done and that he is actually in severe heart failure and his next step is transplant. 

Our friend was genuinely surprised. 

Which should give you a pretty darn good idea of just how good Bodie looks from the outside. Someone who knows him really really well didn't even realize the extent of his heart failure. 

(By the way, I feel comfortable sharing this story here because the dude doesn't read the blog. Obvi. And, if I somehow guilted him into it by way of our conversation last weekend, um, sorry? But he shouldn't feel bad - B looks so good he fools a lot of people these days.) 

But, I digress. Bodie looks good from the outside. REALLY GOOD. His energy is great, he's eating us out of house and home and generally being the funny, ornery Bodie we all know and love. 

But with these heart kids, looks can be deceiving. They can compensate reallllllllly well. So, suffice it to say, I was pretty nervous heading into today's appointments with the heart failure and electrophysiology doctors. We were hopeful he would look stable on the inside, but didn't know what to expect.

Honestly, today's appointment couldn't have gone better. 
(Ok, that's a lie - his heart could have magically improved back to normal, he could have regrown the missing half of his heart, we could have won the lottery on the way in, etc. But, in terms of things that might have actually happened today, it could not have gone better.)

**His BNP (measure of heart inflammation as a result of his heart failure) is even lower than last time - it's at 25, which is considered low-normal. That is pretty astounding.

**His heart itself is smaller (less stressed and inflamed) than it has been since right after his last surgery. These side by side x-rays kind of blew me away. 
The one on the right was taken in August of 2016. The one on the left was taken today. His lungs are crystal clear and his heart is taking up less space in his chest cavity. Plus, his pacemaker just looks super cool on the bottom left. 

**His echo showed a tiny bit of improvement. Small, but definite improvement. Every appointment has been sort of a "maybe I could convince myself there is a tiny bit of improvement" conversation. But this time, there was a legit improvement. A tiny improvement, but enough of an improvement  for his symptoms to really abate. 

**His rhythm is about the same as it was last time. He's in an abnormal rhythm approximately 50% of the time, which is pretty consistent with his last appointment. 

The best news? Assuming the Zio Patch monitor we put on today doesn't show anything alarming, we got a six month pass until we have to go back. A SIX MONTH PASS, peeps. In the world of heart failure, this is huge. I honestly didn't even know kids in heart failure got six month passes between appointments. Of course, if anything changes, we'll bring him in sooner, but it's nice to not have to go in sooner.

Today was a very good day. 

He's still in severe heart failure. 
He will still need a transplant. 
Much sooner than we wanted or expected.
There is still no surgery they can do to avoid transplant. 
There is still no other medical option other than transplant. 
He is still on a boatload of medications (8 serious heart meds, to be exact) to keep his symptoms at bay.
Just so we're all on the same page here.

But, for right now, we're good. 
He's not listed for transplant yet. 
He's happy. 
He's thriving. 
He's just a regular second grader, obsessed with Legos and spiders and farts. 
We are so grateful for this respite between medical emergencies. 
We'll take it. 
Because we can get pictures like these.

This is Bodie with Dr. Anoop. 
Dr. Anoop was there with us on the night we almost lost Bodie. I will never forget her standing in the doorway of his ICU room for several hours straight, just watching him decompensate, watching and waiting and worrying right alongside us. So to get to run into her today, to get to see the two of them together, for her to see Bodie so full of life, it just meant so much.

And this one.
Bodie and his surgeon, the incredible Dr. Starnes.  
My hero with his hero.
Enough said. 

Saturday, February 17, 2018

The force is strong with this one

Today, we celebrated this little dude turning 8.

Hard to believe we've been blessed with 8 years with this sweet, silly, stubborn little dude. 

We have too many friends who didn't get to 8. Or 7. Or 6...
In a community where CHD takes too many children every day, we know we are profoundly lucky to still have this little guy with us, enriching our lives every day with his silly sense of humor and love of life. 
So here's the thing. 
When you've had 5 heart surgeries and are dancing around a transplant, birthdays are a huge freaking deal. And you go all out. So when Bodie asked for a Star Wars birthday party, with a Death Star pinata and a Death Star cake, of course I said yes.  

What I should have said was "um, how about a Lego party instead? Where everything is square shaped with nice even edges?" But I digress.

A Star Wars party he wanted. 
So a Star Wars party he got. 

Complete with a DIY Death Star pinata. 
I forgot to get a picture beforehand, but one mom did get this cool pic of the exact moment the candy started spilling out. 
And hey, it actually looks like the Death Star now.

And a Death Star Cake.
The cake that almost did me in. 
There were tears. 
So many tears.
All mine. 
All at midnight the night before the party. 
Dusk even offered to pick up a sheet cake when he grabbed the pizzas for the party. 
Which made me cry even harder.

But I managed to pull it off and it was such a hit. 
The cake was on top of a platform of rice krispy treats (also a huge hit), complete with an army of Storm Trooper cupcakes. (My first attempt with both a rice krispy treat cake layer and fondant.) 

And all sorts of fun themed foods.
"Yoda Soda" - green party punch
Obi Wan Popcorn Kanobi
"Sith sticks"
Oh, and "Vader Veggies" with "Droid Dip"

But the highlight of the party by far was this man. 
We have the most amazing neighbor who just happens to be Luke Skywalker. 
I know, right??? What are the odds?

He pulled up in his tricked out R2D2 car, and you could hear the kids squealing from a block away, I swear. 

And he gave the the most amazing Jedi training. The kids (not to mention the adults!) were enraptured by his knowledge and teaching. Each of the kids got to fight with him twice and the kids loved EVERY SECOND. 
(Yes, that's Sierra - and yes, she's grown a foot since the beginning of the year - and yes, she's in the most adorable Darth Vader dress ever!)

We were blown away and I know the kids were as well (by the training, not Sierra's dress - although the dress was cute!)

All of the kiddos got to take home training badges, pool noodle light sabers and official Jedi certificates. 

When all was said and done, Bodie told me it was the best birthday party ever. 

And if any kid deserves the best birthday party ever, it's this guy.
Ok, well, not that guy, but the one in that guy's costume
The adorable little blondie underneath that really bad dude's costume. 
(B is obsessed with Darth Vader and insisted on the costume, complete with the voice changing helmet. But then, he eagerly destroyed the Death Star Pinata and ate the Death Star cake - so he basically destroyed his home. So yeah. not quite sure what to do with that one.)  

But this guy, yep, he deserves the world. 
And I'll welcome any birthday party I can make so epic that this dude has to take a break from the fun. 

Saturday, January 27, 2018

Is it worth it?

Last week., I was connected with an expectant mom. A sweet mom who had just received an HLHS diagnosis and was planning on terminating. I shared Bodie’s story with her and the experiences of other kids with HLHS, of how much hope there is with this diagnosis. I was so hopeful she would change her mind. She didn’t say she would change her mind; I think she was just making sure she had a complete picture of what an HLHS diagnosis looks like so that she could make an informed decision. Nevertheless, I was so hopeful. 

After talking with one of the best programs for treating HLHS in the country and doing further research, she still chose to terminate. I understand objectively why she made the decision she did. This journey is not for everyone. It is hard. Especially if you have other children in the home. I get it. 

Even so, I was crushed. It was so hard to look at my amazing little boy and realize that even seeing him, it’s still not enough. He is not enough. How it grips my heart to realize that someday he will realize that people choose to terminate pregnancies solely based on the heart defect he has. That people look at the life he leads and say “He’s amazing…but yeah, no thanks…”

I don’t begrudge this mom. I understand why she made the decision she did. But it hit me at the core. 

So, to say I was wrestling with all the feelings going into this week pretty much sums it up. 

And then this week happened. 

In the span of just a little over 48 hours, we lost 2 amazing HLHSers. 

Oh, sweet Kate. Kate was a spunky, sweet 5 ½ year old who had fought through unbelievable odds just to be here. She had survived brain injuries and seizures on top of her heart condition. And yet, still. Her smile. Her laughter. It was everything.  She was obsessed with Minnie Mouse and had just gone on her Make a Wish trip to Disneyworld last week. In a world of bravehearts, she set the bar. And her mom, Erica is amazing. She is one of our Board members at Sisters by Heart and is a close friend of mine. She is tenacious and fought to get Kate everything she needed to live a full life. And, like me, seriously uses humor to get through stuff. So, clearly, Erica is my peeps. Kate left behind Erica, her father and 2 sweet brothers, trying to understand how she was perfectly fine one day and inexplicably gone the next. And how they move forward without her. My heart is shattered for them. 

And Will.
Man, this kid. This 7 year old’s spirit was indomitable. Like Bodie, he was born with HLHS and didn’t get too far before he needed a heart transplant. He had a really rough road to getting that transplant, but he got it in the nick of time. He battled back and finally made it out of the hospital right before Christmas, only to come back after Christmas with what ended up being tumors in his body. He passed away from complications from those tumors. Yes a complex medical kid. Yes a kid who was in the hospital for almost an entire year. But a kid who inspired thousands with his smile and his love of football. A kid who, at the end of the day, was just a boy who wanted to play with trucks and cheer on his football team. My heart is broken for his parents, Chris and Meghan, who were by his side every single day of that journey to transplant, who never stopped believing, who never stopped fighting, who never stopped hoping.  

My heart is in pieces right now. This CHD journey is so so hard. And in the wake of these enormous losses (not to mention the countless others I hear of every week), I thought back to that expectant mom and wondered “Was this what she was trying to avoid? This pain. This overwhelming sadness. The loss of children you have come to love like they were your own. The neverending anxiety and fear surrounding your own child’s future. The grief and agony I am seeing on my friends’ faces this week. Was she right to say no to all of this?” 

I have been mulling this question in my head and my heart. 
Is it better to just walk away before you’re invested? 
Is this, all of the pain and uncertainty, worth it? 

And here is the conclusion I reached. 

There is so much pain in this journey. So much fear. Overwhelming, gripping anxiety. 

But just like the break-up doesn’t define a relationship for its entirety, and constantly refereeing fights between siblings doesn’t define their relationship nor your love for them, the pain and the fear don’t define the CHD journey. What defines it is the resilience and spirit of individuals born with CHD. The lessons they have to tell us. It’s unlike anything I had ever known before my son was born. It’s so hard to explain, but people with CHD have this amazing spirit and fight to live and to experience life. 

If it wasn’t worth it, Kate could never have taught me that brain injuries don’t have to be the end of your story.

If it wasn’t worth it, Will could never have taught me that a kid doesn’t need every toy on the planet to be happy, just to get to watch football with mom and dad. That a kid can smile despite everything and that we as adults could really take some notes.

If it wasn’t worth it, Brenda and Jake and Jenni and Kenny (and the other adult CHDers I know) could never have taught me that your diagnosis does not define you. It is a part of you, yes, but it does NOT get to define you. 

If it wasn’t worth it, I wouldn’t have joined the bravest tribe I know, my heart moms. Some days there’s the only reason I can keep my head up. They get it. 

If it wasn’t worth it, I wouldn’t get to witness miracles on the regular.

If it wasn’t worth it, my daughter wouldn’t get a front row seat to learning about compassion and celebrating our differences. 

If it wasn’t worth it, I wouldn’t be given the gift of constantly being reminded that life is short, that kids grow fast, that they only get one childhood and we’re privileged to get spend it with them. That there’s no such thing as too many hugs and too many kisses goodnight. 

Do I wish my son had a perfect heart? 
Absolutely 100,000%. 
(Or as my kids say, "google %" - I guess that means the highest number you can think of?)

But if you ask me, with everything I know now, is it worth it? 

Hell yes it is worth it. 


Wednesday, January 17, 2018

So there was this cow...

Dusk spent some of his formative years on a ranch outside of Reno, in Yerington, Nevada. This year, while in Reno for Christmas, we spent a little time on that ranch. While there, we came across this beauty.
A dead cow.
A reallllllly dead cow.
Which Bodie was endlessly fascinated with.
Which prompted a 30 minute negotiation whereby Bodie tried to pin down under exactly which circumstances I would have allowed us to bring said dead cow home with us. What if we knew it didn't die of any disease? And if we had rope to tie it on top of the car? And we had enough people to help us lift it onto the top of the car? And if we had a bigger shed at home to put it in? 

Right. Because there would ever be a circumstance where my answer would be "Sure, I'd love to bring a dead cow home with us from Christmas vacation."

But if you know Bodie, you know he has a tendency to hold on to things (with every ounce of his being and then some). So the conversation really did last 30 minutes, before my father in law finally says " you know where Dusk went?" And disappeared. He, apparently, had better things to do than continue a dead end negotiation with a 7-year old who won't take no for answer. Bodie, luckily for me, did not. Almost a month later and we are still talking about the dead cow. I kid you not. He actually shared the pictures in class today. You're welcome to the parents of his classmates, who I'm sure are scarred by the pictures.

Oh, and also, we did a lot of other cool stuff while in Reno.
We hiked and explored under a breathtaking Nevada sky.
 We goofed off with Popo Alan (and Grandma Jan, but somehow didn't manage to get a pic of it!)
We sledded. 
And by "we," I mean Dusk and Sierra sledded. 
Bodie did one run, got ice in his glove and lost his marbles. Hyperventilated all the way back to the car about how cold he was and stayed in this position for a good 10 minutes while his hands warmed up. 
Overly dramatic, yes. But also, it appears the heart failure is not doing him any favors in trying to keep his body warm, particularly his extremities, at altitude. Poor kiddo. 

We went to church.
We also painted! We did a DIY Paint Nite and had a blast.. Here were our final products. 

However, in spite of the cool stuff, I fear this will forever after be the vacation "where mom wouldn't let Bodie bring home the dead cow."