Sunday, December 4, 2016

The detours we take

We went to cut down our Christmas tree today. 
Yes, I said "cut down." I know we live in Los Angeles, but Dusk and I both grew up in more rural areas and our families cut down their own Christmas trees each year, so I can't lie - a little bit of us died inside each year we took the kids to the Home Depot Christmas Tree Lot. Last year, we introduced them to cutting down their own tree.

We went back to the same place we went last year. Last year, they had tons of beautiful trees in all shapes and sizes. 

But, because we're the Bennetts, and it's 2016, and I think we can all agree that 2016 and the Bennetts REALLY need to just freaking break up already, because it's just not working out for anyone, the trees all pretty much looked like this.

A whole freaking farm of Charlie Brown Trees. 
Apparently the Santa Paula Christmas Tree farm was hit with some sort of disease and lost most of their trees. They're regrowing.

Of course.
Because, 2016 and the Bennetts.
On a side note, we're really sorry to everyone else who wanted to buy there - I'm sure that had the Bennetts planned to get their tree elsewhere, the Santa Paula farm would have been spared the tree disease.

But I digress.

We pulled out the phone and thanks to the modern technology of wifi and yelp, we found another farm 30 miles south of us. So we headed out, following the google map directions...

And stumbled upon this little gem - Grimes Canyon. 
A beautiful little stretch of highway with some rather treacherous turns, and amazing sandstone walls that people have carved various drawings and writings into.
They were SO cool. We stopped off the road and let the kids explore, carving into the walls. 
It was totally not on our agenda, and I couldn't be spontaneous if my life depended on it, but we decided to stop anyway. And it was SUCH a cool detour, and one we'd never have found had we not taken such a circuitous route to finding our Christmas tree this year. 

We did eventually get our tree at a lovelylittle tree farm in Thousand Oaks and it's now proudly adorned with way too many ornaments but so much love. 
Today was such a powerful reminder of how detours can shape our lives, how even in the midst of annoyance and not getting where we thought we were going, if we just open our eyes, we might see some cool surprises.

We're currently on another detour, this one with Bodie's health. I haven't blogged any updates, because, well, we don't really have any. He had a REALLY rough Thanksgiving, with the same symptoms he had shown in early November - he was SO blue and lethargic, spent a lot of time lying on the floor, and would cry every time we asked him to eat, saying he was going to throw up. It seems beyond improbable that he would have caught another bug so soon, so we chalked it up to worsening heart failure. It was so scary. 

But then, he bounced back and Sierra had some GI symptoms as well, so perhaps the improbable really did happen, and it was another bug on top of his heart failure. We don't know.

He seems better. Not 100% back to normal, but better. His energy still comes and goes (although it seems to be mostly on the upswing), and we struggle with making sure he stays on top of eating, which seems to be more critical now that he's in heart failure. Low blood sugar and heart failure just don't combine particularly well for him.

We see the heart failure team at CHLA this week, and we covet your prayers for that appointment. We don't know what route they will want to take - they may want to cath him to find out exactly what's wrong to make the best decisions on what meds to give him. Or they may not want to cath him when he's having function issues, and instead choose to try meds out first and see if we can get an improvement on his echo before cathing. We don't know.

A lot we don't know. 
I deal with uncertainty about as well as I do with spontaneity. 
Not so much. 

So we covet your prayer this week as we meet with CHLA. 
Please pray boldly for Bodie's echo to show improvement, and for wisdom for the heart failure team as we manage the detour ahead. 
Please pray for this detour to be a short one, and that God might show us wonders we might have missed were we not on this detour. 
Pray for Bodie's body and pray for peace for us all in this time of uncertainty. 

Tuesday, November 22, 2016

Choosing Gratitude

We had Bodie's follow-up echo and cardiology appointment today. We did not see the significant improvement on the echo that we were hoping for. We did see a tiny improvement, which we are grateful for. AT LEAST IT DID NOT GET WORSE! We did a bunch of labs (including measuring his BNP, a heart failure marker, and CRP, a cardiac inflammation marker). We will also be getting referred to the heart failure team at CHLA. 

This is very serious, and has the potential to completely upend our lives. It is scary and we covet your prayers over Bodie.

This was not what we are hoping to hear, but even so, there is much to be thankful for, and that is what we're choosing to focus on this Thanksgiving week.

Bodie's significant lethargy and nausea have all but abated, and seem to have been caused by a combination of bugs and not heart failure. Bodie feels fantastic, and for that we are grateful

Bodie's heart failure symptoms are so mild (slightly lower oxygen saturations, purplish tint to his lips and occasional puffiness around his eyes). Heart failure symptoms can be so much worse, but they are not - he is living a full and abundant life, and for that we are grateful. 

He likely has had this degree of heart failure for some time, and we had no idea. Had he not had a combination of nasty bugs that pushed him over the edge, we might not have even known. And it's pretty darn hard to treat something you don't realize needs to be treated. The illnesses brought his heart function decrease to our attention, and for that we are grateful.

One of the theories being floated around is that his anti arrhythmic med, Flecanide, may be causing his heart failure. Because of that, we cut his dose in half last Wednesday. We were worried that his heartrate might skyrocket, or that his EAT would increase. That did not happen. In fact, his EAT seems to have lessened. We have learned a valuable lesson from this wean - his body can get the same benefit from a smaller dose of Flecanide. Bodie can safely get by with a lower dose on a medication known to have very huge very scary potential side effects, and for that we are grateful.

His heart failure is not affecting his entire heart. For the most part, his function is fantastic, other than the apex, which simply isn't moving the way it should be. We don't know what this means. But we do know that we are not dealing with a global decline in function, and for that we are grateful.

His cardiologist does NOT believe (and neither do we) that we are anywhere near heart transplant discussions. However, she thinks he has gotten complicated enough with enough moving parts that we need some fresh eyes, and maybe some medication adjustments to help him out. So she is recommending we see the heart failure team to see what their thoughts are. We have two top notch heart facilities close by with excellent heart failure teams, and for that we are grateful. And we have a doctor who understands when we need some more help, and for that we are profoundly grateful, and do not take for granted.

We have a Father who answers prayer, who knew all of this was coming, and is holding us all in His hands, and for that we are grateful. 

Big picture: our son is here, full of joy, vibrancy and love (with a side of piss and vinegar). 
How could we be anything but grateful???


Friday, November 18, 2016

Stumping us all...

Warning: this is about to get complicated. 
Hold onto your hats, folks.

It's hard to put into words the kind of miraculous turnaround we have seen in Bodie this week. On Monday, he was blue, lethargic and winded. I was getting calls from his school about how concerned they were and we were in talks about cutting his school schedule back to half days until we got this heart failure thing under control. He couldn't even participate in recess because he simply didn't have the energy to do much more than sit. I was anticipating a hospital admission by week's end. I was SO scared. 

But something changed, starting sometime mid-day Tuesday. By Tuesday afternoon, he was feeling so much better, and within another 24 hours or so, his symptoms were completely gone. Other than some remaining cyanosis (purple lips) in the mornings and slight puffiness in his eyes, by all accounts, he is 100% back to himself. He even felt well enough to go bowling tonight!

Honestly, we're all kind of stumped. Clearly, the power of prayer moved God's hand over our son this week, and for that, we are profoundly grateful. Please don't mistake our continued concern for lack of gratitude for what we witnessed this week.

But it is too soon to know whether we are out of the proverbial woods. We might be. Or the past few days may have just been a reprieve to prepare us for the news we will receive next week. We just don't know and are still in a state of concern. In any case, we are so incredibly grateful to have our spunky, vivacious boy back.

We don't know much at this point. What we know is that 
(1) he had depressed heart function on his last echo;
(2) he was displaying classic heart failure symptoms at the time;
(3) those symptoms also are classic stomach bug symptoms; and
(4) his symptoms disappeared very shortly after starting the diuretics and before making any other med changes.
That is literally all that we know. 

There is so much we don't know.
1. Was he in heart failure before this week and we just didn't know it? Did the bug (or, more likely, 2 bugs - a tummy bug and a cold of some sort, as he does have some mild respiratory symptoms as well) just push him over the edge? If this is the case, then we are incredibly grateful for the viruses, as they alerted us to something we would not have known was happening. Now we can aggressively treat it.
did the catching of the 2 bugs just wreak enough havoc on his body to cause depressed heart function? Not likely but not unheard of.

2. Did he have more EAT (fast heartrate) lately because he was in heart failure?
did the increased EAT itself cause the heart failure?

3. Are his symptoms gone because they were caused by a bug and he's over the bug (so his echo next week should show no change)?
are the symptoms gone because they were caused by heart failure and that has miraculously disappeared (so his echo next week would show an improvement)?

4. Did the diuretics provide enough relief to keep the heart failure at bay? Seems unlikely since his symptoms started to abate before the diuretics could really have done much.

As you can see, we have a lot of theories, but no concrete idea whatsoever of what is actually going on. Outwardly, he appears much much better. But with cardiac kids, the outside doesn't always match the inside. His heart failure may be every bit as bad, if not worse, than it was on Monday when we saw his cardiologist. We don't think so, and we hope that's not the case, but he truly have no idea. So I would say we're being "cautiously optimistic" but I honestly don't even think we have enough information to be optimistic at this point. 

We will know more after we do a repeat echo next Tuesday. That should give us a good idea of where we stand and what path to take going forward. In the meantime, please keep the prayers coming for our sweet boy. His recovery this week has been nothing short of miraculous. Your prayers are clearly being heard. Please keep them coming. 

Monday, November 14, 2016

I didn't want to be right...

I didn't want to be right.
I really didn't.
But, as it turns out, symptoms of tummy bugs don't just mirror heart failure...sometimes they actually ARE heart failure.

We saw Bodie's cardiologist this morning and an echo confirmed my worries. His symptoms aren't being caused by a bug. They're being caused by a decrease in his heart function. For my heart mom friends, his apex isn't contracting like it should be. For my non heart mom friends, his heart isn't in the worst shape it could be, but it's definitely not where we need it to be to keep up with him.

We dealt with this in September, and chalked it up to post-op issues. We never expected to be dealing with it again 2 months later.

Bodie is such a complex little dude. 
There are several theories for what is causing it. 

It could be that his persistent EAT (the fast heart rate we tried to make go away by surgery this past summer) that is still hanging around has morphed into a different kind of rhythm that his body isn't sure how to handle.

It could be that the beta blocker we increased last month (to try to control his EAT) is depressing his heart function (beta blockers can absolutely do that, although Bodie has not had that reaction before).

It could be that his heart function is fine when he's in sinus rhythm, but depressed when he's in EAT. He was in EAT when the echo was performed. If he's in EAT more than he's not, the increased arythmias may be causing his heart function to be depressed. The continued depressed function could be causing the lethargy and fluid retention we're seeing.

Single ventricle kids can technically go into worsening heart failure at any time. It could be that.

We just don't know.

All that we do know is that:
1. His body doesn't like EAT. Never has. Never will.
2. His heart function is currently depressed. 
3. He's retaining some fluid and fatigues easily.
4. He's currently in EAT a lot.

Those 4 things are linked. 
We just don't know quite how. 
So, we go back to the drawing board to try to discuss the meds we're using to manage his EAT - the combinations and doses. 
And, in the meantime, start him on diuretics to help with this decreased function. I gave him a couple of doses of diuretics over the weekend and already have started to see an improvement. His stamina has improved quite a bit.

And we hope and pray for answers. These are uncharted waters for us, and we're scared. And we were thrown into them so quickly. This has really all happened so fast, which is NOT typical for post-Fontanners. They tend to be stable with lots of warning when things start to decline. 
Please pray for our sweet boy, for wisdom for his medical team, and for peace for all of us. 

And finally, when you see Bodie, please don't talk to him about this change in his heart and what we're praying for, unless he brings it up. He does understand some of what is going on, but he also just wants to be a typical kid. From what I'm writing, you're probably expecting to see a kid lying in bed. But these CHD kids can be deceiving - they compensate so well. He definitely fatigues more easily now. And needs to take more breaks. But in between rests this weekend, he rode around in a golfcart and had a blast.

He's at school today. And he'll go to karate later today (he's got a belt test to prepare for, and we don't want to miss any classes leading up to that!). He's still living as normal a life as he possibly can. As worried as we are, we've tried to never make his heart the focus of his life, and we'd like to do that as long as we can. 

Thank you so much for your continued support and prayers as we process this and sort through the options we have available to us to treat this and get Bodie back to his sweet, wild self. 


Sunday, November 13, 2016

Consider yourself lucky...

If your child gets a stomach bug, and your biggest concern is whether he or she will drink enough Pedialyte to stay hydrated...consider yourself lucky.

If you are more concerned with whether it will spread to the rest of your family than whether your child will have to be hospitalized because of it...consider yourself lucky.

If you know for a certainty that this just a passing thing, and don't have to make emergent doctor's appointments and have long texting conversations with your child's cardiologist about it...consider yourself lucky.

If your child gets a stomach bug, and never, not even once, does the term "heart failure" cross your frontal lobe...consider yourself oh so very, very lucky.

Bodie has been battling something since last Wednesday. We think it's a stomach bug. But here's the thing about non specific stomach bugs. The symptoms (nausea, stomach pain, bloating, puffiness, crankiness, lethargy and listlessness) can also look a heck of a lot like heart failure.

He's been alternating between being a kind of tired version of himself, and looking like this.
Right after I took this picture, he laid down on the bench and said he was too tired to get up - and we were eating out at a restaurant.

Something is off, for sure. 
Is it his body fighting off a bug? 
Or is his heart tiring out and pushing back against the crazy task it's been asked to do for the last 6 years? 

It's probably a stomach bug. But here's the thing about having a child with a complex medical condition - you don't get to bank on probably. These kids can really go into heart failure at any time. When you have a child with a critical congenital heart defect, you kind of have to assume heart failure until you are proven otherwise.

So we're headed into the cardiologist tomorrow morning bright and early. She's squeezing us in for an echo and to check everything out.

We think it's just a stomach bug. We're pretty sure it's just a stomach bug, exacerbated by me taking the kids out of town the past few days and him not being able to just rest. He definitely seemed better today than he has the last few days. But we've honestly not seen Bodie this lethargic from a bug in a very, very long time. This kid just doesn't get sick that often, and usually handles it pretty well when he does. So the thoughts are lingering that this could indeed be heart failure. And the fears are very, very real.

Please join us in praying for Bodie tonight and tomorrow. Pray that his echo looks good, that his heart function is fine, and that this is indeed just a bug. And pray that he recovers and is back up and running quickly. And, if you're not having to worry about things like possible heart failure when your child is sick...again, consider yourself very lucky.


Tuesday, November 1, 2016

It's a marathon, not a sprint...

I was at a conference last weekend, working with other parents and practitioners across the country to improve outcomes for children born with Hypoplastic Left Heart Syndrome, like Bodie. At one of the breakout sessions, focused on the prenatal diagnosis, the comment came up that "the HLHS journey is a marathon, not a sprint" - and that we needed to make sure to make that clear to parents at the time of diagnosis.

I laughed when I read it.

I totally get the analogy. It's perfect.

I used to run marathons. 
Well "run" is a loosely defined term. In my case, it was more like "slog," a term my dad coined to refer to my slow jog. So you get the visual. I'm no Olympic athlete. But I get the concept of the difference between a sprint and a marathon.

And it's true that this journey with complex congenital heart disease is a marathon. It is a lifelong battle. It is with my son and always will be. And, for that matter, with his father.

But the difference between an actual physical marathon and the marathon of raising a critically ill child is that, in the physical marathon, you can choose how to pace yourself. You know what's coming and how to prepare yourself. You can drive the course beforehand and map it out. You can train the most effective way.

But, when you're raising a single ventricle kid, you don't get that luxury. You can't slog the whole thing, even if you want to. With complex heart defects, sometimes seconds DO matter. Minutes matter. You can't rest on your laurels and slog if the time has come to sprint.

You are out of the gates sprinting to the first surgery, and then you bet your ass you're sprinting to that second surgery, the one that gets you your ticket to a more normal life. And then you catch your breath for a second or two, but then you're sprinting to that final destination, the "Fontan" surgery. (And, if you're lucky like us, you'll stop sprinting momentarily between the planned surgeries for some extra bonus surgeries or complications.)

And when you get out of that final planned surgery, you're freaking exhausted. You have been sprinting for somewhere around 2-4 years give or take, and you're D.O.N.E. You've arrived in the land of milk and honey. You're looking around for your medal (which comes in the form of pink fingernails and toes) and counting the minutes until you get to soak your muscles in a hot tub and get a really good night's sleep. You pat yourself on the back, because "YOU MADE IT!!" Other parents tell you "congratulations!" because they know this, being post-Fontan, is what you've trained for and accomplished. And it is a huge accomplishment in its own right.

But then, you feel someone poking your shoulder, and you turn around to hear them saying "Oh, you're not done. You don't get to rest. Now the marathon part starts."

And it sucks. Because you've been sprinting so hard for so long that you're all of Gatorade and energy bars. You're even out of the gross energy gels, saved for dire circumstances when you really had no other choice. Even the water stations are long gone. So, you have no reserves left. Literally, you got nothing. The last thing you want to do is start running a marathon.

But you get up and start running. Or slogging. Or crawling. Because you have no choice. Your child's life depends on it.

And you figure out how to rebuild your reserves. On the easy straights and the downhills, when your child is doing well, you rebuild your faith community and rely on family. You build new relationships. You find yoga and meditation. And alcohol. Yes, alcohol. There, I said it. 

Because there will be hills and tough parts and you have to have some reserves to tackle them. That is the nature of the Fontan physiology. The Fontan physiology affects so many organs and there are so many opportunities for complications and issues to arise. 

We know the hills that have taken down those who went before us. We know the nasty turns they have faced, the places they've been surprised and run out of resources. And we thank God that the doctors are working their hardest to minimize the impact of those hills, and trying to provide more resources. And they ARE. 

But the truth is, we don't know what path our child will take. Every child has a different marathon route. 

Some kids sail right through nary a complication, and things are great for a very long time. 
Others never make it past the start line. 
And the vast majority fall somewhere in the middle.

Some, like my dear friend Jennie with her sweet Tyler, seem to be in a constant sprint over some crazy hills that most of us can't even imagine climbing. And yet she sprints with ease, because that's what she has to do. Others don't seem to have too many hurdles - yet. But this journey can change at a drop of a hat.

Tonight, my spunky sweet 6 year old said he didn't feel well out of the blue, and fell asleep within minutes, with oxygen saturations that would make a grown man pass out. He should be fine by morning. He probably would be fine and chipper if I woke him up right now. But I'm not going to, because then I'll have to explain why I stress ate half of his Halloween candy waiting for his saturations to come back up.  In my defense, did I mention that chocolate is also an excellent coping mechanism on this marathon? 

So yes, this is a marathon, not a sprint. Except that there's a heck of a lot of sprints along the way. So, to the newly diagnosed, I would say, gather your resources now. Find a friend on this marathon with you. Know that this journey will be hard. And keep your eyes peeled for those spots where you don't have to sprint. Because those days will come. Sit back and relax and breathe where you can. Because I promise you, there will be many days on this journey where you will be forced to sprint with no reserves in your tank. So take the time to fill your tank where you can. Because this journey is hard.

But I can also promise you, it is so SO worth it. Every smile and moment you get with your brave warrior is worth it. Take it from a mom in between sprints. It's worth it.

Honestly? There's no one I would rather be on this sprint/marathon/really-just-one-long-sprint with than this kid right here.


Saturday, October 8, 2016

The conversations we keep.

This weekend, we had a really cool opportunity. 
Make a Wish had contacted us a couple of weeks ago, to ask if we could speak about our wish experience at a convention near LAX. We readily agreed and then they sent us the information about the convention - which turned out to be a Hot Wheels convention! What a perfect fit for the kid obsessed with all things cars related!

We spoke last night during their auction, and I briefly touched on Bodie's medical condition and what his wish trip meant to him and our family. And then we received Make a Wish collectors edition cars, and passes for the entire weekend event. 

We spent the better part of today at the event, wandering through the different rooms selling and trading cars. They even had a magic show and raffle for the kids, and Bodie won the big prize - a new bike! 
Both of the kids pretty much thought today was the! We really had such a lovely time. We love speaking at Make a Wish events, because it give us a chance to reminisce about our wish trip and how much fun we had. And it's such a wonderful organization!

This afternoon, we were moving from hotel room to hotel room, looking at all the Hot Wheels cars for sale (there were SO MANY!!!!). In one room, a father came in after us with his young children. He recognized us from speaking last night and came over to say hi. He asked Sierra what her favorite color car was - when she said pink, he pulled a pink car out of his backpack for her and gave it to her. She was over the moon and he was so kind about it. He then gave Bodie a few cars as well. 

He then busied his children and came back over to talk to me. What he said next stopped me in my tracks. He told me that he and his wife, 13 years ago, had lost a baby. That baby had an underdeveloped left ventricle and they had opted to terminate the pregnancy due to the high costs of medical care the child would require for her whole life.

He was so sad. His pain and regret were palpable. The unanswered question of what might have been had they continued the pregnancy. Might she have been a success story? Might she have been like Bodie, running around and active, living a full life?

I didn't know what to say.
My heart broke for him.
What do you say? 
What do you say to someone who chose to terminate for the same condition that you chose to give your son life in spite of? 

All I knew was that this poor, sweet man was already full of so much regret, I didn't want him to hold onto it any longer.

I told him it WAS expensive, that we are very lucky that Dusk has a job with amazing health benefits.
I told him medicine was different 13 years ago, that just because Bodie is doing so well, born 6 years ago, does not necessarily mean his daughter would have done as well.

But, even so.
She could have been.
She might have been.

She could have been an honor student or an athlete.
She might have been one of the teens I saw this past summer, speaking at Camp Taylor.

There were so many things she could have been.
And the sadness of that filled the air.

I can't get that sweet man out of my mind.
My heart is so heavy tonight, thinking of him.
I hope something I said gave him some peace.

As we ate dinner tonight, I couldn't stop hugging Bodie, thinking of what might not have been. This amazing, smart, talented and funny soul I get to witness on a daily basis. 
God's perfection shown through my son's imperfection.

And to think of the many parents who still choose to terminate for HLHS. 

If you're an expectant parent facing an HLHS diagnosis, please don't.
Please don't terminate.
Please give your child a chance.
I promise you, it is worth it.  
Today, I came face to face with the other side, with someone who made the other choice.
Please don't.

Thursday, October 6, 2016

Was surgery successful? The complicated answer.

In the aftermath of Bodie's surgery, I have been asked repeatedly whether or not the surgery was a success. The answer is that it's complicated.

Actually, it's not.

The answer is "NO" and "we don't know, but goodness, we hope so."

We sent Bodie into surgery for 2 reasons: 1) his atrial tachycardia and 2) the risk of future ventricular tachycardia.

Atrial Tachycardia
Bodie has battled atrial tachycardia (a fast heart rate coming from his atrium) for most of his life. We have tried multiple meds to manage it, but never got it completely managed. Off medication, his heartrate is over 200bpm (beats per minute). On medication, the heart rates are only in the 100-130bpm range. Rates in this range, while not good for long-term heart function, present no danger to Bodie. Most people with heartrates in this range would not even notice. However, for reasons we have never been able to explain, when Bodie has prolonged episodes of atrial tachycardia, his body does not like it. He gets temperamental (more than typical!), easily angers and is very hard to deal with generally. Because his tachycardia all originates from a condition that he inherited from Dusk, CPVT, and sympathecomies are well known for treating arythmias originating from CPVT, we did the surgery to hopefully reduce or eliminate his atrial tachycardia. Unfortunately, surgery did not help this problem

According to his holter monitor from last week, he is in atrial tachycardia approximately 40-50% of the time. This is close to what it was prior to surgery. The upside is that his holter monitor DID show a pattern of when his tachycardia starts, leading us to believe adding in a second dose late in the day of his beta blocker may improve this.

Ventricular Tachycardia
Ventricular tachycardia is VERY dangerous. It is what causes sudden death - and what prompted both of Dusk's cardiac events in the last 2 years. VT causes the ventricle to beat too fast, prohibiting it from getting blood to the body. Very, very scary stuff. Bodie has NEVER shown any ventricular tachycardia. However, the CPVT he inherited from Dusk DOES cause VT, and it presents in Dusk as VT. So the likelihood of Bodie's atrial tachycardia eventually turning into VT is very high. When that happens, he will need an ICD. ICD's are hard to place in kids (and in Bodie's case, will require a sternotomy (his chest to be opened again). They are constantly improving this technology and we have every reason to believe this will not always be the case.

That said, sympathectomy surgeries are WELL KNOWN to treat VT caused by CPVT, The studies are clear that it's a good option. This was the second reason we opted for the surgery - to buy an insurance policy so to speak. Was it successful? We don't know. If he NEVER has a VT event, yes, we will say it was successful. If it buys us 5 years from the first episode of VT (maybe he would have had it starting at 10 years old, and now it won't happen until he's 15), then that will buy us 5 more years for him to grow bigger, for them to develop better devices, smaller devices, easier ways of putting them in him. In that case, it will have been a success. At this point, we just don't know, but based on the data we DO have, the odds are good that surgery may have helped this problem.

Did you follow all of that? I guess it is complicated after all. In short, it did NOT solve his short term problem, but it may very well have solved the long term problem - which was the more important, more dangerous problem anyway.

The immediate complications he faced post-op (seizure, decreased heart function, fluid build up, etc.) have all resolved and he is back to his baseline from that perspective. Thank the Lord!!! 

Except for his eye, where the pupils are still noticeably different - but he LOVES this. I think his Electrophysiologist was pretty impressed when I mentioned Bodie's wonderful attitude about it. That's ok. We're used to being impressed by Bodie. 

Meanwhile, Bodie carries on like nothing happened. He's just a regular 1st grader, loving school, counting in Japanese, advancing in karate and learning to ride a skateboard (sometimes all on the same day)...
Who just happens to have a fresh scar on his back.
I guess to him, it isn't that complicated after all.
You take what God gave you and you roll with it.
Because life's too short to look at it any other way.
I think we could all learn something from this kid.

Friday, September 2, 2016

Recovery: The good, the bad, the unexpected

Bodie is now 2 weeks post-op, and, by most measures of success, doing pretty well. 

This recovery has been much harder than previous surgeries, and we're not sure why - perhaps it's his age (being older now) or the fact that this was a more painful surgery, or some combination of the two. But by Monday, Dusk and I had reached the conclusion that something was different about this recovery. We knew Bodie was holding onto fluid (we could see it in his poor puffy eyes) and he was spending a lot of time lying around and saying he didn't feel well.

We had a follow up appointment with cardiology on Monday and found our answer. His heart function is pretty sluggish, compared with his baseline function. It's a bit of a chicken and the egg scenario - "Is his heart function sluggish because they pushed so many fluids after the seizure and it's just hard for his heart to get through that extra fluid? Or is there so much fluid onboard because his heart is so sluggish from the after effects of the anesthesia that it can't get the fluid off like it normally could?" Either way, the end result is the same - a kid feeling crummy and like a balloon about to pop. So we doubled his diuretics - and, 4 days later, he has peed off 4 pounds of fluid (seriously, almost 10% of his body weight? I'd be feeling pretty cruddy, too if I was carrying an extra 10% of water weight!!!) - and is like a new kid.

He even went to karate on Wednesday and earned his next belt stripe! 
(I know, 12 days post op is a little soon to return to karate, but in my defense, the CT surgery team had said he could return to karate "when he feels ready" and, well, he felt ready!!!). 

The plan now is to slowly wean the diuretics and make sure his body can handle it. His heart function took a similar hit following his Glenn surgery at 7 months old, so this is not our first time at this particular rodeo. It recovered then fairly quickly, and there is no reason to think it will not recover again this time. All the same, we really appreciate prayers specifically for his heart function to bounce back. In the meantime, he'll be monitored closely by cardiology to make sure we see that function come back to his baseline.

He had his CT surgery post op appointment today and that went well.  Unfortunately, during his appointment, he was in EAT (Ectopic Atrial Tachycardia, the fast heartrate - i.e. the whole reason we did this surgery). We knew going into this surgery that there was NO guarantee it would work, but that the odds were very good that it would help him by reducing the amount of EAT he's in, and the odds were pretty good that it would stop it entirely. Unfortunately, surgery has not stopped the EAT entirely. And, from my vantage point, it looks like we're actually seeing a lot of it. 

We're trying not to jump to conclusions ("surgery failed! We never should have done this!") - clearly, I'm VERY good at doing just that. His electrophysiologist wants us to get him fully recovered (approximately 30 days post op) to do a holter monitor and see where we're at. We'd REALLY appreciate prayer that the EAT we're currently seeing is just post-op nerve twitchiness and that, as he fully recovers, it will go away. 

Finally (if you've made it this far!), Bodie had one unexpected complication from surgery that he wants to share with you all. If you can believe it, he is SUPER excited about this. The nerve to his left eye was affected by the surgery and his left eyelid droops a bit now and his pupils are different sizes (the right is bigger than the left). 
So, basically, my previously big blue eyed baby now has the trademark "Gerrish squint." 
Sorry, dude. 
At least you look more like me now?

(The technical term for this rare (so of course Bodie got it) complication from a sympathectomy is "Horner's Syndrome."). It does NOT affect him in any way other than cosmetically. It was long thought to be completely irreversible, but a recent study showed an almost 50% chance of it spontaneously going away within 6 months post-op. 

Bodie's is very mild. Sometimes, you can hardly tell. When he is tired, or fluid overloaded (like the last 2 weeks), it is more obvious. (So if you thought there was something "off" about his left eye in pictures since his surgery, you were right - and very observant!)) And when he goes out in the sunlight, the right pupil constricts almost down to the size of the left, so you can't tell at all. We had held off saying anything since, well, does this poor kid really need us pointing out anything else to make him different? 

Dusk and I were pretty crushed initially. But we told Bodie this morning and he was SO excited. He says it makes him like a Superhero now. He is so proud of his special eyes! So we're running with that. I think we could ALL use a little of that resilience in our lives! 

So I'll leave it up to you whether to pray for it to spontaneously resolve. If you do, just don't tell Bodie - he really wants it to stay that way!

Wednesday, August 31, 2016


A few weeks ago at dinner, I mentioned to the kids that "mommy and daddy never should have gotten married." 

When I saw the looks on their faces, I had to immediately backtrack and explain what I meant.

We are SO happy we got married!

We are so different.
So, so, SO different.
I am the optimist to his pessimist.

My glass is always always ALWAYS half full, even if there's only a drop of water in it. He is so busy pointing out the flaws in the workmanship of the glass that he never gets to the question of whether it is half empty or half full.

His feet are planted firmly on the ground (ok, maybe even a few inches under the ground), while my head is in the air.

He moves slowly and deliberately. I have permanent bruises on my shoulders from walking too fast and cutting corners too close, hitting my shoulders on the wall. For the first few years of our marriage, he would repeat the mantra to me "Slower, more calculated movements." To which, I would replay "I DON'T HAVE TIME FOR SLOWER, MORE CALCULATED MOVEMENTS!!!" He finally gave up.  True story.

I sometimes think God put us together just so I would have someone to fix all the stuff I break.

When we went to premarital counseling, after our personality tests, the pastor said "Well, the bad news is, you two are different. VERY VERY different. The good news is, you two are very VERY aware of how different you are."

Yeah, on paper, the two of us never should have gotten married. A lot of people never thought we'd work. Just too different, I guess.
But we were crazy in love - and we were sure it was a God ordained thing.

And you know what's cool? We make a pretty good team. 
If we were both like me, we'd be so busy focused on how great everything was, we'd never bother to change anything to make it any better. And if we were both like Dusk, we'd be so focused on how everything needed to be fixed, we'd be so miserable no one would want to hang out with us. I think God knew we needed each other.

13 years later, looks like He was right. 
It hasn't been easy, and has required lot of work on our part, and lots of help from pastors and therapists along the way.

But who would have thought? 
Who would have thought such total opposites would make it through the "good" parts of marriage, let alone the excessive amounts of bad we've been hit with? 7 miscarriages, 8 heart surgeries, 2 hip replacements, a burglary, a house fire, and lots of other "fun" stuff along the way? 
Probably not a lot of people.

And they'd have been right.
Except that, at the center of all of our differences is the most important similarity.
The one thing that holds it all together is our shared faith in His truths and His love. And our unwavering joint commitment to trusting Him and following Him.

Thank God, 13 years ago, we decided to prove some people wrong. 
Because if we hadn't, we wouldn't have this amazing little tightknit family. 
And we wouldn't have it any other way.

I know 13 years doesn't seem like much. I mean, my parents have been married almost 50 years, which, I think we can all agree, is a LONG time to be married to the same person! But, the way I look at it, we get credit for time served in the bad parts, so it's really more than 13 years! Am I right???
Here's to 13 years. Celebrating the right way. With dinner at Shakey's. 
In our defense (yeah, I know, there's really no defense for it, but i have to try), the kids have gift certificates for Shakey's that expire today, so we have to use them!. And, at this point, we're celebrating by not being in the hospital!  

Here's to 13 years of us getting better and stronger together. Either that, or now being a bratty teenager who knows it all. I guess it depends on who you ask, Dusk or me. :-)