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.