Thursday, April 20, 2017

I will not take these things for granted

There is a song in the early 90's by the band Toad the Wet Sprocket called "I Will Not Take These Things for Granted." It's an incredible song, and it was sort of the soundtrack to my late high school and early college years. (As an aside, urban legend has it that it's written about someone in jail, so maybe not the best life song, but whatever, I was a teenager, so it therefore meant whatever I thought it meant personally to me, because, you know, I knew everything...) 

In any case, it has been on my mind all day today.

Here is why.

Facebook reminded me this morning that 7 years ago today, we almost lost Bodie. This was my post at 11:07pm that night...

"Bodie has had an extremely difficult evening. He may not make it through the night. Please, please, please pray for a miracle for our sweet boy!!!"

That night seems so long ago. A night I wouldn't wish on anyone. Bodie has given us a lot of scares in his short life, but that night probably tops the list. We were so so close to losing him. Code meds were drawn, we were told to consider calling family. We honestly didn't know if he would make it through the night. 

And yet he did. 
God saw fit to protect our son that night.
And in so many nights since.

I know our scary moments are far from over. 
Bodie is in full blown heart failure. There is no easy path forward. I know the path will include more scary moments. 

But today, I didn't want to think about those. 

Instead I chose to focus on the sweet boy in front of me, jumping in and out of the pool, laughing hysterically and grinning ear to ear.
The boy who proudly stood on this raft in the middle of the pool for 5 and 1/2 minutes (no easy feat for a kid whose abdominals have been cut into on multiple occasions). 
The boy who loves with wild abandon and just spent 10 minutes hugging and kissing me "just because, mama."
I do not take these moments for granted. 
Not one single moment.
These moments were never guaranteed. 
Not for Bodie.
Not for us.
Today, we are unspeakably grateful for this boy and our moments with him. 

Thursday, April 13, 2017

Rhythm is gonna get you

This dude.
He had an appointment with his electrophysiologist (his pacemaker and rhythm doctor) this morning. Overall, the appointment went fine. His BNP (measure of heart failure) is continuing to drop (from 230 a month ago down to 180), which is great - it means his current med cocktail is working well for him.

He's riding his pacer a bit more, which is good to see (ideally, we would want him riding his pacer 100% of the time - he's at about 17%, and is tachycardic the rest of the time). However, his resting heart rate is just too high (averaging in the 130s, and NOT in sinus rhythm). This is bad for him both because it's not good for his function, and because higher rates can predispose him to arythmias. So, his EP is re-starting a low dose cardiac specific beta blocker.

When I mentioned being concerned about restarting beta blockers since that's what started this whole heart failure mess, his EP looked at me like I had 2 heads. And then went on to tell me that he does NOT believe the beta blockers caused all of this, but that it is likely a manifestation of his underlying heart disease (not his HLHS - the CPVT (rhythm disorder he inherited from Dusk), which is similar to non-compaction, in that it can cause cardiomyopathy at any time). I did not know until today that was his theory on that had happened (we thought it had all been attributed to beta blockers and his last surgery). 

No one has a crystal ball. And no one can go back in time to see what exactly caused Bodie to go into such severe heart failure. So we don't know.

But, if his doctor is right, that means 2 things - 1) his heart is unlikely to recover. and 2) the heart failure is likely to progress. No one knows at what rate. Or whether it will. But it could.

We know his current heart is subject to a whole lot of rhythm issues. We know those are likely to get worse as he gets older. We know they are likely to get worse if his function worsens. We know it is incredibly likely transplant is much, much sooner than we had thought. Most importantly, ALL of Bodie's rhythm issues are housed in the conduction of his current heart. That means, when this heart is replaced with a new heart, he will have NONE of these rhythm issues anymore. None. (He may have other rhythm issues, but none of these crazy complex chd rhythm issues he currently has.) At some point, it just makes more sense to stop trying to get this heart to limp along and get him a new, healthy heart.

If only it were that easy. 

If only transplanted organs could be guaranteed to come right when you need them. If only transplants came with a 100% success rate, instead of a list of potential side effects and complications that would keep you up at night. 

That said, we are walking a fine line of deciding when to evaluate him and list him for transplant. 

When the risks of keeping his current heart are higher than the risks of getting a new heart, but when he is still healthy enough to do well with a transplant and wait for a heart. That's when we evaluate and list him. But when is that? Again, that crystal ball would sure come in handy right now.

For now, we're taking it day by day. 

We are sending his records to UCLA and Stanford to get their take on the situation and what they recommend and will be talking to CHLA about their recommendations in early June. 

Unfortunately, as with everything Bodie does, his journey to transplant will not be the easy one. His labs show that he is highly sensitized, which means his odds of rejecting a new heart are high. Some centers will not even transplant highly sensitized kids. We don't know how highly sensitized Bodie is yet (mostly because I don't have a clue how to read the report!), and whether that would prevent any of the centers we're looking at from listing him, but that is a possibility. Thank God, there are therapies some hospitals use now to bring down antibodies. They're not fun and they're not easy, but if they make the difference between being a transplant candidate and not, then they are worth it. Stanford happens to be on the cutting edge of some of those therapies, which is part of why we are sending his records there.

The best thing you can do for us now is to pray. 

Pray for Bodie, who is currently doing well symptom wise. He is happy, he has tons of energy and he continues to eat us out of house and home. His body is compensating very well, which makes all of this easier. Please pray that his body continues to compensate. Please pray that we can get his antibody issues handled so that he can be a good transplant candidate.
Pray for Sierra, who knows some, but not all, of this. She loves her brother and she worries about him (we have shielded her from the major worries we have, but even so, she gets that transplant is not an easy path).

Pray for Dusk and I, for wisdom in choosing the path forward, and the timing of everything. We know God has a plan in all of this, but it is sometimes hard to see through the fog to see what His timing is. Pray for peace in our decisions, and pray for community to come alongside us if we end up needing to travel for care. Splitting a family up so that one child can get the care they need is not an easy decision. It is not one that will be taken lightly. But it is a decision we may ultimately have to make. We don't know. And the uncertainty is hard. Pray for peace through all the uncertainty. 
We covet your prayers.


Monday, March 20, 2017

It will get better

The evening of March 8, 2014, our home looked like this. 
As we hit the anniversary of our fire, I read back through my blogposts from the night of the fire and the weeks following. It was honestly so hard to read those posts, to be brought back to that night, to the shock and the fear, to the days afterward. So much I had forgotten. 

On March 8, 2017, a family in our local community lost their home to a house fire. A family with 2 little boys and a dog. A family who never saw it coming. A family who is now living in a hotel and trying to find a rental home, with estimates that it will take a year to rebuild their home.

I don't know this family personally yet. But our local community is so amazing, and I have seen Facebook posts and emails and meal chains about and for this family. I have watched our local moms come alongside this family and support this family as they face the unthinkable.

I wanted to share some words with this family, and to any family going through something similar.

I promise.

Right now you are overwhelmed. 
Your life has changed on an axis and will never, ever, EVER be the same.
It's ok to grieve that.

It's ok to walk through what remains of your house and think " My house looks like I live in a war torn country. How did I NOT realize this is what a house looks like after a fire?"

It's ok to hate the smell of burned plastic and ash that inhabits your house. It's ok to have every sad emotion in your body triggered by that smell for a very long time. It's ok to hate crossing the threshold into your home because that is all you will smell. 

It's ok to suddenly realize you have lost something irreplaceable (for us, it was our entire ornament collection, both the ones my husband and I made as children, and the ones our sweet kids made for us in preschool). It's ok to suddenly feel an enormous loss and pain over that. It's ok to cry buckets over this. Actually, it's ok to cry buckets over every single facet of this experience. It sucks. There's sort of no getting around that. 

It's ok to stand in what was your bedroom and cry, thinking "How on earth can I possibly try to categorize what was here and what is salvageable or not?" 

It's ok to survey your house, speechless, the house where your children may have been brought home from the hospital, and learned to walk and talk and eat that first birthday cake - and to know that it will never, ever, be the same.

It is ok to be overwhelmed and to grieve.

But it will get better. I know it doesn't seem like it, but it will.

There will be a time when your house is rebuilt and it becomes your HOME again, where you will again see it as a safe sanctuary. (Just fyi, it won't be right away. I distinctly remember our first night back in our rebuilt home, turning to my husband and saying "I have this fear the house is going to burn down tonight." I expected him to say "you don't need to worry, it won't." Instead, he said "yeah, I have the same fear." That was, shall we say, super not at all helpful.) But, it WILL happen. The time will come where it's NOT the first thing on your mind when you walk in the front door - or the second or the third - or even on the list at all.

There will be a time where the burned plastic smell will be just a distant memory (seriously!)

There will be a time where your friends will come alongside you and create NEW precious family heirlooms (for us, it was when my inlaws had my kids make new Christmas ornaments for us - and when other friends sent us ornaments for our tree that first Christmas after the fire).

There will be a time when you will finally, blessedly, be DONE with inventorying all of your belongings. And you will realize that, at the end of the day, it was just STUFF. You are safe. Your children are safe. That is all that matters.

There will be a time when the days you spent in the hotel, and the rental home, will be fun memories. Right now they are stressful and you wonder if you are somehow ruining your children's childhood (because, unfortunately, no one has written a book on "How to make it fun and not traumatic for your kids when your house burns down suddenly").

But the times you're spending now and in the near future - in a hotel and a rental home - they will be a time of bonding and your kids will have such great memories. My children still talk of when we got to stay at the Embassy Suites and swim in the pool every night - and all the fun we had in the rental house. 
(This was at the hotel, 3 nights after the fire.)

Right now, this seems like the most critical thing that will ever happen to you. And right now, it is. But there will come a day when it will just be a part of the fabric of your children's childhood, that makes them stronger and more resilient. I know this for a fact. I have already seen this with my kids. And we're only 3 years out.
(My kids now - resilient and happy).
It will get better. I promise. 

You're in the super sucky part right now and I'm so so sorry for that. Just keep pushing through. 

Lean on your friends and family. And the kindness of strangers. Even if you're not good at asking for or receiving help (preaching to the choir here), you NEED it right now. It's ok to take the help. 

Finally, if you're blessed enough to have a relationship with Jesus Christ, lean deep into that relationship. It will sustain you in a way that nothing on earth can. And if you don't, get to church and get going on that one. :-)


Friday, March 10, 2017

Taking the good where we can find it

Bodie had an appointment with the heart failure team today. 
(It had been rescheduled twice due to the plague that hit our house, but everyone is finally well now (thank God!), so we were finally able to get in today).

The good news is that his BNP, or measure of heart inflammation, has continued to drop, from 285 in mid-January down to 230 today! This is very good news and means that his current cocktail of meds is effectively taking enough workload off of his heart so that it isn't as stressed from the dysfunction. 

Unfortunately, his heart function just has not improved. At all. We were very hopeful that it would. But, at the end of the day, it just hasn't. 

So what does this mean for Bodie? 
Despite his severe dysfunction on echo, he looks pretty good all things considered. I mean, he doesn't look good compared to kid with a perfectly healthy heart and good heart function - he's not running any marathons or anything. But for a kid with severe heart failure, he looks pretty darn good. His energy is good, he is eating well, he grew a bit and he's enjoying life. He's in school, and, on his good days, he's really not that symptomatic. There are a lot of days where you wouldn't even know.

But, on his bad days, it's very hard to keep sight of how good he looks on his good days. For Bodie, his heart failure shows up almost entirely in GI symptoms. On his bad days, he wakes up nauseas, and sometimes throws up mid-morning (usually at school, unfortunately - yay for Bodie, who now gets to be that kid who barfs at school - as if he hasn't been dealt an unfair hand enough already). He usually perks up later in the day and is fine by evening. But the bad days are hard to predict and often leave him sad. And some days we can make it 2 weeks before he has a bad day. And other weeks, he'll have 2 bad days just a few days apart.  It's frustrating for Bodie and heartbreaking for us. 

He cannot sustain this up and down indefinitely. Honestly, it's working for now, but it's no way for a 7 year old to live life. We tell Bodie all the time that this season won't last forever - either his heart will recover - or it won't, and he'll get a new one that will work much better for him. That said, he's currently stable enough that the heart failure doctor is comfortable waiting 3 months to see us again (a 3 month pass is pretty fantastic for a kid in severe heart failure!). If his heart function still has not started to rebound by then, then it's likely we'll having the transplant discussion. 

This does not mean he will be listed for a heart in 3 months. What it means is that we will have a discussion about evaluating him for transplant in 3 months. If, based on where he looks in 3 months, we decide to proceed with that, THEN we will start the transplant evaluation process at that time. The process itself takes some time. Even then, the decision may be to hold off on listing him if he otherwise looks ok and is compensating well. Or, the evaluation may reveal that he really needs to be listed ASAP. We don't know at this juncture. So, transplant, while still on the table, is still a bit off for Bodie - as of right now, at least.  

But all of that is a conversation for another day. We covet your prayers that that day is a bit further off even than it seems right now. Your prayers have brought our boy this far and we know God has the ability to heal and we covet your prayers that He will continue to heal our sweet boy. 

Today was a good day. Bodie is having a GREAT day symptom wise and his appointment was good. His function has not gotten any worse and his bloodwork continues to improve.  He got back to school in time to enjoy his school's annual Game Day with his classmates and is having a playdate this afternoon with one of his best friends. In a life of constant fluctuations with his health, we will take days like today any day. And pray for many, many more of them.

I will leave you with this. 
In case you're wondering what brave looks like, here it is. After a blood draw, ekg, echo and consult with the heart failure doctor, he brushed it off and headed back to school and into Game Day with a huge smile and dressed in orange just like every other kid in his class. 

Today was a good day indeed. 

Friday, March 3, 2017

Sick little dude

We have one sick little boy on our hands right now.

Some nasty bug has hit his 1st and 2nd grade class and taken down all but 2 of the kids (at latest count, at least). And it took them all down within 4 days. Crazy.

He has been out of school since Tuesday, with a fever and coughing, and some congestion.

By all accounts, although it's hanging on, it's not the worst virus in the world. Manageable symptoms - for a healthy kid. He's tolerating it well, thankfully. 

Tuesday night, his heartrate was running in the 160s and his sats were in the high 80s (both NOT good for any kid, let alone ours), but we managed to eek it out at home and haven't seen anything that drastic since then. His heartrate is a little high, but his oxygen saturations seem to be holding steady, for the most part. He doesn't have labored breathing, he's not retracting. He's just uncomfortable and tired, and we're managing it with Motrin and Tylenol. He still has an appetite, so continues to eat well. He seems to be managing it like every other kid in his class. Up and down, but really just making him a little more tired and cranky. He's been watching movies, doing puzzles and building Legos. Like any typical sick 7-year old.

Except that he's not.
He has half a heart.
And his function is severely depressed.

I cannot stress enough how lucky we are to be able to manage this at home.
Many of our friends don't know this, but most kids with the degree of heart dysfunction he has end up inpatient for every virus, particularly if they're respiratory in nature. 
So this virus has me on edge.

Bodie has always had a robust immune system. 
When he was 4 months old in the hospital recovering from both c-diff and MRSA in his bloodstream at the same time, the cardiac team consulted immunology. The immunologist walked in and said "I'm happy to test this kid. But bottom line, a Norwood single ventricle infant who is still alive after battling both MRSA and c-diff at the same time clearly does not have any issues with his immune system."

And that doctor was right. 
Although Bodie has caught a lot of bugs over the years (particularly when his oxygen saturations were lower, making it harder for his body to fight stuff off in general), he never had to be hospitalized for viruses or bacterial infections. He just kinda powers through them. We have been exceedingly blessed.

But heart failure changes the picture.
When Bodie was diagnosed with heart failure in early December, the doctor told us "this cold and flu season will tell us how soon he needs to be listed for transplant. If he is inpatient every time he gets sick, then his body will clearly be telling us that it's time." I am pretty sure, based on the condition of his heart, she expected him to be inpatient most of cold and flu season.

And yet, he is holding strong at home. 
We are so blessed.
If it takes him a couple more days than his peers to get past this, then I will consider it an incredible blessing.

But the more prolonged the virus is, the greater the likelihood that his heart will grow tired and we'll end up needing to take him to the hospital.

So please pray for our little dude. 
Pray that we're nearing the end of the virus, and that we can get back to life as normal (well, life as normal as it is with a half a heart that's not functioning too well.)

We were supposed to see the heart failure team this week, but rescheduled due to Bodie being sick. We aren't interested in bringing his germs into the cardiology clinic, particularly to the heart failure team, who deal with kids in heart failure (who can't handle viruses due to weakened heart function) and transplant kiddos (who can't handle viruses due to immune systems wiped out to prevent rejection of their new hearts). They have tentatively rescheduled us for next week. Please pray Bodie is well enough to go and that we get good news.


Wednesday, February 22, 2017

Birthday blessings

This morning, Dusk and I were lamenting how tough things have been lately, with this never ending lawsuit and our refrigerator that decided it's not working again. And then, like God always does, he nudged me a bit via a Facebook reminder of what was happening 7 years ago at that exact time in the morning. We were sending our 6 day old son back for his first open-heart surgery.

Ok, God, I got it. 
This, everything else we're dealing with, it's the small stuff (well, except for the health stuff - there's nothing small about the health issues Dusk and Bodie are facing). But everything else is annoying and overwhelming at times, but still just little stuff. 

And that seemed like the perfect time to share some pics of Bodie's birthday party this weekend. 
Bodie picked a skateboarding theme. I did my best, but the kid gave me a run for my money this time. But we played "pin the wheel on the skateboard" and had skateboarding coloring pages and mini-ramps for the kids to decorate. So I think I earned at least a little mom cred on this one.

But really the coolest part of the party was the cake. I'm not gonna lie.
The cake was phenomenal.

We went through Icing Smiles again, an incredible nonprofit organization that works with bakers across the country to provide birthday cakes completely free of charge to families impacted by the critical illness of a child. So we asked for a skateboarding cake and boy, did they deliver.

Look at this cake!

And SO SO good. 
Bodie was not the only one who couldn't get enough of it (and I may or may not be eating leftovers every night after the kids are in bed!)

Here's the coolest part. 
Icing Smiles works with a network of bakers. 
So you give them your request and they put out the call to the bakers in your region, asking if anyone is available to do a cake with a particular theme on a particular date. And you get whatever baker is available. 
Well, the baker this time was the EXACT same baker who did Bodie's cake the last time we used Icing Smiles (when she made an amazing minion cake for his 4th birthday)!!! It was so wonderful to have the same baker, and to give her a hug and for her to see how much Bodie has grown. 

I cannot tell you how much I cherish this:
AND she even brought a set of books for Sierra!!! 
I know, amazing, right?!?
Christine is truly an angel - I kind of feel like she's our personal sugar angel!!! 
If you'd like to give Christine some love (and seriously, you should - she is an incredible human being), you can check out her Facebook page here

Anyway, the party was so fun. A wonderful celebration of our sweet, brave boy. With 20 kids running through our tiny little house, it was a bit chaotic (and it took my introverted self 2 days to fully recover!), but so worth it. Kids were running around and chasing each other and having so much fun. 
Bodie didn't hate having the girls fighting over who got to sit next to him. 

And Grandma Jan and Popo Alan even flew out for the celebration and got to stay a couple of extra days, which proved to be icing on the cake for us!
I'll leave you with one final picture. Because I think it encapsulates who our son is.
In case you're wondering what hope looks like, this is it. Half a heart, currently in heart failure, running around barefoot, clobbering a pinata at his 7th birthday party. If this picture doesn't capture this kid's indomnitable spirit, I don't know what does.Photobucket

Thursday, February 16, 2017

The Big 7

To our sweet Bodie,
Happy Birthday! 
I cannot believe you're 7 - how is that even possible??? 
(I know you refuse to accept that you turned 7 today, and are insisting that you are 6 until your party on Saturday, but since I was actually there the day you were born, I'm gonna go with my recollection on the date.)

I know this wasn't the best day for you.
I know that CHD doesn't take a break just because it's your birthday, that heart failure doesn't look for a "good date" on your schedule to rear its lovely head and throw symptoms your way. 
I know you put a brave face on it and muddled through a long school day even though you were tired and nauseas and thought you might throw up.

I know all of that.
It's unfair and it sucks.

But here's the really important part that your daddy and I want you to know.

You are amazing, kiddo.
You really are.
I know every parent thinks that, but honestly, there is just something special about you.
When I was 17 weeks pregnant and Dr. Kim told me you would be born with half a heart, we realized we weren't promised any birthdays with you. And yet, we've already celebrated 7! 7!! And here you are, currently sitting in a rough patch, but thriving nonetheless. 

You're doing all these things a "regular" 7-year old kid would do. You're reading (you really really are! It's slow, but it's there and we couldn't be prouder!). You're building Legos allllll the time. You love art and Star Wars and Dr. Seuss Books. You are obsessed with MacGuyver (ok, maybe that's not a typical 7-year old thing - you can blame that on a dad who grew up in the 80s. We'd like to think you're learning good survival skills by watching it with dad). You're thisclose to testing for your next belt test in karate (and usually grumble about having to go - like any other 7 year old). But you are NOT a typical 7 year old. You have been so so much in your life - and yet, are such a typical kid. I know you don't get how incredible that is - and that's ok. It's probably better that you don't. 

But you should know, you are funny. So so funny. And you have this amazing, magnetic personality. Kids your own age may not necessarily be drawn to you, but it makes them put up with your shenanigans, which is pretty darn helpful for getting through childhood. But kids younger and older, and especially adults, are totally drawn to you. People are often telling me how much they love talking to you, how funny and sweet your stories are. That is God's gift to you - and to us, really. He has given you this sweet, engaging personality. So the physical body he gave you might not be all it's cracked up to be. But there's a lot more to life than having a good physical exterior. That part just gets old anyway. But what's on the inside - the sweet, funny, tenacious personality - that's there to stay, buddy. And that's an incredible gift to have.
And your love for life blows us all away. You have been through so stinking much, and yet still have a smile on your face and silly laughter in your voice. That is a gift. Tonight, as you were eating KFC and Rice a Roni for dinner in your underwear (you're welcome for not sharing that pic, buddy - also, I don't want CPS to take you away because I posted a pic of you in your underwear, so there's that), I was just marveling at you. At your insightful questions. At your idea to run around the table and have everyone give you 7 hugs. At you recounting all the kids at recess following you around as you ran around in your new eagle wings (by the way, buddy, I was thisclose to not buying those for you - clearly getting them was a good call, so thank you for the constant begging me to get them for you). 

You, my sweet boy, are a gift.
In so many, many ways.
Please don't ever lose sight of that fact.
God is going to do amazing things with you.
He's already doing them. 
He's already done so much in 7 short years.
We don't know the path that will get us from 7 to 8. But we pray it will just be the first of many of the next 77 years with you.
We love you, buddy. To the moon and back a million bajillion quadrillion times.
And then some.
Happy Birthday, big guy. 

Saturday, February 11, 2017

CHD Awareness Week - and a way to help us!

Congenital Heart Defect awareness week runs February 7-14. 
Which means we're right in the middle of it. 
I've been fairly quiet this year during CHD Awareness week, and I had an opportunity to share in a piece for The Mighty about why. You can see that post here
(I write from time to time for The Mighty, a disease and disability community - I typically write about CHD, but occasionally branch out to ADHD and other topics as well.) 
Please take a moment to read this and share with others. 

Additionally, many of you have asked how you can tangibly help us. 
In December, two of my fellow heart moms came alongside me and asked how they could help. They suggested a GoFundMe account and I said no. I kept thinking things would get better, that the pressures would diminish, that we wouldn't need help. So we opted instead for the GrubHub and Target "gift card train," which has been so so helpful! But here we are 2 months later and as you know from my last blogpost, if anything, we're under more pressure than before. So when my dear friends Lillian and Shannon asked me again recently, I relented. We're not good at asking for help. We would so so much rather be on the giving than the receiving end. But if God is teaching us anything in this time of trial, it is that we need to say yes - to prayers and to offers of help. We are learning.

So, please pray for our family, and, if you are so led, contribute to alleviating some of the pressures we are facing. You can find the link to our gofund me account hereBennett Family

We are so profoundly grateful for your love and support. ♡♡

Sunday, January 29, 2017

Under Pressure

I love Jen Hatmaker's books. 
In one of her books, she makes a reference to having a pie and everyone wanting a slice of it. Whoever is asking for a slice doesn't think they're asking for much - I mean, you have a whole pie, so they're really not taking much. But they can't see that everyone is asking for the same thing - and by the end, you have nothing left. 

That's how I'm feeling about life right now.
Most people who know us and what we're going through feel sorry for us, and pray for us.
The thing is, most of them only see one of the slices of pie that we're dealing with - or maybe two. 
Most don't realize just how much stress is piling up for us right now. 
That's why I want to share this here.
To give you a better idea of everything we're dealing with and beg you to pray for us. 

You guys know I reach for joy in the midst of struggle. 
That's how I was raised, that's how I'm wired, and that's how I live life. 
I have had so many people lately telling me how strong I seem and how well we're handling it.
Friends, it is so an illusion.
We're barely hanging on.

You know that song "Under Pressure"? 
That is us every minute of the day.
We've been able to manage all of this fairly well so far, but it just keeps adding up and we are feeling it.

Bodie is doing ok
Definitely not as good as he looked a month ago.
He's had a rough couple of days, and we are struggling with the question of whether he suddenly doesn't want to eat again and is tired and having stomachaches because of the natural ebb and flow of his heart failure. OR if it's a reaction to this newest medication. If it IS a reaction to the medication, then we need to stop it (even though it seems to be helping lower his heartrate). But if it's NOT a reaction to the medication, then we need to keep him on it to give his heart the best chance to heal. And we don't want to throw in the towel prematurely if his symptoms are just coincidental. We need prayers for his body to heal, and for this new medicine to help him, not hurt him, and for the path to be clear with this new medicine.

But it's more than just Bodie's heart. 
Even most of our closest friends don't even realize just how much we're dealing with.

1. We're dealing with Bodie, of course. That is our biggest stressor.

2. But Dusk is also in constant daily pain from his hip replacement a few years ago. He has to get regular therapy just to keep the pain manageable. And we are in a nasty lawsuit with the doctor who did that hip replacement. You may recall that Dusk wrote a negative yelp review about his experience and the doctor went after us to remove the review. He can't sue us for that, so instead he's suing us under a contract issue (he warranted that he was in network, but billed from an out of network office, and is suing us for the amount the insurance won't cover). Because it's not an open and shut case (from an ethical position, it absolutely is, but thanks to lots of legal loopholes, it's not as clear), we are now in the unenviable position of paying him $15K now to settle (talk about a huge stressor), or risk going to court and losing - and having to pay hundreds of thousands of dollars. The amount of stress this is giving us is off the charts and we covet prayers for an immediate and peaceful solution to this. We need to get this off our plates. I cannot stress this enough. Our family has been through too much to have to worry about this right now. PLEASE PRAY FOR A SOLUTION TO THIS.

3. I have a badly herniated disc in my lumbar spine, and did epidural injections a year ago to try to ward off surgery. Thankfully, the injections got me out of enough pain that I have been able to do twice a week physical therapy since last spring and have made a lot of progress in strengthening my core. However, when I am not doing regular therapy (which I wasn't able to do for much of December), my back stiffens up fairly quickly. And stress makes it so.much.worse. My back is definitely suffering the effects of the recent stress build up (so is my GI tract for that matter, but I won't bore you with those gory details). I can usually handle stress pretty well, but this is all getting a bit much for me, and I'm seeing it playing out in my body. The last 2 months with Bodie's health have rocked me. They've forced me to come face to face with something we always knew was coming, but that I had successfully put out of my mind. And it's terrifying. I am struggling to manage my anxiety as a result. It's not pretty.

4. We found out this week that Sierra has a plantar's wart on her foot. Not a big deal in the grand scheme of things, but we need to get her into a podiatrist to see her. I laughed when the doctor suggested that - and said "Sure, I'll get right on that. Right after I get my thyroid ultrasound done" (In have a benign growth in my thyroid that has to be monitored - I have scheduled and canceled that ultrasound twice since early December, since both days Bodie was in the hospital). When you're in crisis mode for so long, other "non crisis" events which really wouldn't be a big deal any other time get pushed to the bottom - and accumulate quickly. :-( But in the meantime, the poor girlie is in a fair amount of pain (oh, and has some fungal infection on her leg and impetigo on her face from chapped lips - fun stuff)!!

5. Last week, my car had an unfortunate run in with a rather large concrete column. I have no defense except that clearly I wasn't paying attention as well as one might have hoped. There is some fairly serious damage to the side of my car. We really should just file it with the insurance company and get it fixed. But we're very cognizant of the fact that we had 2 large claims within 11 months (the burglary and then the house fire) and we really don't want to put ourselves in a position where the insurance company drops us because we're just too expensive to insure. :-( So, we're just leaving it alone for now. And if you happen to see me driving the van, you'll at least understand why we're not getting it fixed just yet. Can I blame it on my ADD??? Cause I totally will.

6. Oh and let's not forget that the IRS is still holding onto our (not small) 2014 tax refund due to some identity theft issue. The "non-identity theft" division says there's no hold up and it should have been released. They keep sending requests to the "non-identity theft" division to release it. I'm sure they'll get right on that. 

7. We're starting to realize Bodie is significantly behind in reading. We knew he was a little behind, but didn't realize until this week just how far behind. He's a smart kid. We think the last few months have just been TOO MUCH for him and he's just D.O.N.E. He's not really interested in doing anything that's going to require much effort. Which I get. But the kid still has to learn to read. So I'm trying to build that intense focus into our schedule (and battling my own mommy guilt that he's not already reading super well). And we stopped his speech therapy in December because I just couldn't do one more thing. So he's still struggling with his speech (he has a lisp and has pronunciation issues). I know we need to get that restarted. I know we do. But I just can't right now.

I know there's more. 
Mostly all the normal stuff that families with school age kids deal with. 
The usual stressors of busy schedules, making sure everyone is fed, birthday gifts for friends are purchased, spelling bee words are studied, bills are paid, etc. Just a lot.
I'd say we're pretty much tapped out with life stresses.

My purpose in sharing all of this was two fold. 
Firstly, just to let you know how much we're dealing with. Many of our close friends know some of what we're struggling with. But very few know we have been dealing with all of these issues. So when we don't reply to emails, or rsvp to events and show up 2 hours late, it's not because we don't care. I promise. It's because we just can't even with life anymore. 

And secondly, to ask, no - to beg, for prayer.
We're in a rough spot.
The pressures are building up, from all sides it seems.
We're leaning into God.
That's what we're supposed to do, and that's what we do when things get tough.
But, at this point, we've leaned so far into Him, we're pretty much lying face down on the floor. We are totally depleted and don't have much effort to keep leaning in. This is where you come in. 

Please pray for us.
Pray for Bodie's heart, his health, his stamina. Pray for miraculous healing for him.
Pray for this lawsuit, for it to just go away. We need it to stop weighing us down.
Pray for a break from all of this drama. From all of the hits we keep getting. We need more than a week of normalcy. We need a long stretch of good to come to us. We need health and we need healing. And we need time so that we can get all of the other stuff taken care of. 
And we need you to intercede on our behalf. 
Please, when you pray, pray for us. 


Thursday, January 19, 2017


Today's appointment was...interesting.

The good news is that Bodie's heart function hasn't gotten any worse.
The not so good news is that it also hasn't improved at all. 
The heart failure doctor said he was really trying to find improvement on the echo, but he really didn't see any.
(We don't know what his bloodwork looks like yet, since we did that at the end of the day.) 

Man, this kid is SO good at compensating.

I'll be honest.
I'm bummed. 
I had really hoped we'd see an improvement on his echo. 
He just looks SO GOOD from the outside.
But his heart failure doctor (and heart failure docs are negative by nature) actually said that a month just isn't much time to see change. We need to see how he does over the next 3-6 months to really determine whether the heart will rebound. I needed to hear that today.

The fact that he DOES look so good from the outside is a very, very good sign. We are all encouraged by that. Because he is stable on the inside and looks so good on the outside, we have tabled the transplant discussion for now.

However, if Bodie's heart function doesn't start to pick up fairly quickly here, that conversation will be front and center. For now, it's just the elephant sitting in the corner, just breathing heavy and giving us dirty looks, while we all smile and pretend it's not there. And see the heart failure team again a month from now.

So we wait and pray.

We're getting pretty good at that.

We also made one medication change.
Bodie is having persistently high heart rates, sitting usually in the 130s to 140s. That's not dangerous to him now, but isn't good for the heart in the long term. Sitting at those rates day in and day out wears on the heart and can cause further heart dysfunction. His electrophysiologist just isn't comfortable leaving him like that. So, we're starting him on Carvedilol, a medication commonly used to treat heart failure, which has the added benefit of a small beta blocker component. We know a number of heart friends on it who've seen significant improvement in heart function while on it, so we are hopeful.

To say that we're nervous going back on beta blockers is the understatement of the century. BUT he is starting out at a very low dose (unlike the very high doses of Nadalol he was on when he went into sudden heart failure). So we're hopeful that a small dose will be just enough to bring his heartrates down without triggering further heart failure. And the bottom line is that we trust his team and know that if they are recommending it, it is because they believe it is in Bodie's best interest.

So, lots of prayers tonight:
1. Pray that Bodie tolerates the new medication well, and that it HELPS his heart function and brings his heartrate down without causing further heart failure or negative side effects.

2. Pray that he continues to feel really good, as he has lately. Pray that his energy stays up and he continues to eat like a teenage boy. 

3. Pray for peace for all of us. Today was a reminder that this heart failure is not just a quick little detour off of our journey, but a place we're meant to stay for some time. And it's an exhausting place to stay. We're all worn out by the last few months, and the promise of it continuing doesn't exactly help replenish our reserves. Please pray for us to find ways to find respite amongst a really exhausting journey.

Bodie looks good from the outside. 
He really really does.
I was marveling at him during his echo today, thinking of what an amazing kid he is and how far God has brought him with this crappy little half a heart. 
We are so, so blessed.

When we got home tonight, he went to change his clothes and got quite a start when he pulled his shirt off and remembered that he didn't let me take any of his stickers off at the hospital.
He picked them all off himself (he also takes out his own IV's these days) and found a much better place for them.
Also known as our bedroom door.
As you can see, he's still got his sense of humor intact. 
Thank GOD for that! 


Tuesday, January 17, 2017

Holding steady...maybe

I've been getting a lot of questions lately about how Bodie's doing, and the answer is, we don't know. 

From the oustide, he looks good. Actually great. Definitely better than he has in months. In some ways, better than he has looked ever. 

He has so much energy. 
His color is so much better.
His sats are back to baseline (typically mid 90's, with dips down to the low 90's here and there).

He is still eating us out of house and home. His first words every.single.morning are "I'M STARVING!!!" and he walks in the door after school asking what's for dinner and when we're eating it. It's sort of like having a teenage boy in the house. It's amazing and something we have NEVER experienced with Bodie. He told us he was hungry more in the first 2 weeks after this last hospital discharge than in the first 6 1/2 years of his life combined. We don't really have an explanation, other than to assume that the beta blockers he had been on since infancy had been stunting his appetite.

He just looks better all the way around.
We could almost convince ourselves that his heart function must have rebounded.

But he had a rough week last week, where he wasn't feeling well again, complaining of tummy aches and being tired. His heart rate was running higher and his sats were running lower.  He has bounced back now and seems better, so we're just assuming he had the tummy bug that had been going around school. But it was a not so subtle reminder that things aren't back to baseline for Bodie, and that his reduced heart function makes it that much harder for him to fight off bugs.

And his heartrate continues to be really erratic. It doesn't seem to be bothering him nearly as much as it used to, but it's not good for him long-term. We don't have any answers on that yet.

And, in truth, we have NO idea how things are looking on the inside. We HOPE that because they're looking better on the outside, that correlates to an improvement on the inside. But, if we know nothing about our son, it's that he's good at compensating. So it's entirely possible that nothing has improved on the inside. We just don't know.

We have a battery of tests and appointments on Thursday up at CHLA, and we'll be seeing both the Electrophysiologist and the Heart Failure team. And we will know more then. 
We covet your prayers for that appointment. 

Please pray boldly that his heart function has completely rebounded. 
Pray that damage they thought a month ago to be irreversible has actually reversed itself. 
If not that, then at least some improvement. 
PLEASE pray for improvement. 
Pray for his BNP (measure of heart failure via blood test) to have continued trending downward. 
Pray for his heart function (measured by echo) to have improved. 
Please pray for our boy.

So much is riding on this appointment. 
And we really have no idea what we're going to find. 
So you can probably guess how high nerves are running in our house right now. 
Please pray for peace for us all going into this appointment. 

And just pray for our little rockstar.