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.