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.