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. :-) 

Friday, August 26, 2016

Where did my friend go?

I always forget.

We get discharged from the hospital and we get home, tired - but ready to hit the ground running.
I think "I can totally do this!"
I do all the hospital laundry (because, let's be real, you don't want those germs inside YOUR house!), get caught up on bills, work, and life.
And then, about 2 days after we get home, I hit a wall. 
We ALL hit a wall.
We are beyond exhausted. 

I forget the emotional toll that hospital stays take on us. As any family who has spent time in the hospital can tell you, the post hospital stay struggle is real. When you're in the hospital, you can withstand everything - the stress, the sleepless nights, the procedures, the worry - because you have your trusty friend Adrenaline to help you out.  Guys, I totally pink puffy heart love Adrenaline. She's so sweet and trustworthy. Always there when you need her, like a true friend.

The problem is, once you get home, your brain and your nervous system are still processing everything. And then they get to a point when they look around for our friend Adrenaline - and realize she has left the building. And then they collectively decide "ENOUGH! No more room. No more Adrenaline to keep us going. We are DONE. Peace out."

Except that you're home. So you should be functioning at 100% capacity, right??? Except it's really hard to do when your body and mind aren't on board. And your friend Adrenaline is gone! 

I think it's accurate to say we hit that place today. We tried to do some normal stuff - I went to work for a bit, we took Sierra to ballet, and even went to the movies and out to lunch with some special friends. It was lovely. Really, it was.

But then we came home and did this.
Which was kind of a repeat of yesterday afternoon.
And all I can think about is going back to do more of it tonight.

Geez. You'd think I ran a marathon today. When all I really did was Adult. Sort of. 
It's not even like I'm recovering from surgery, so I don't have that excuse. Maybe I'm recovering from watching surgical recovery - does that count as an excuse? 

So friends, please have patience with us. We will get back up and running. I hope. No, wait - we will - we have to. But it may take us a bit. So please hang with us while we transition back. And thank you a million times over to those of you who have brought us lunches and dinners now that we're home. Because, oddly enough, we need it now more than ever. Suddenly, grocery shopping, meal planning and cooking (usually one of my favorite activities) seems like my own personal Mount Everest. Go figure. 

And keep those prayers coming. Our friend Adrenaline is gone. But our get up and go will come back. Pray it happens soon! And keep praying for Bodie's recovery - each day is a little better for him and we can't wait for him to be back at 100%!


Thursday, August 25, 2016

Home, sweet home - now the real healing begins.

Bodie was discharged yesterday morning and we were home in time to have lunch with Grandma Jan and Popo Alan, take them to the airport, wash the hospital ick off of us and then take Sierra to karate! Bodie was most upset that he was not allowed back in karate yet (he is free to go back as soon as he feels up to it, but we have told him he has to wait at least a week)!
(this was him at the dojo, goofing off and eating gummy bears)
 In related news, there is a slight chance that Bodie thinks he is capable of doing more than his body can actually do. He seems to have a desire to hit the ground running as though he didn't just have major surgery. I can't imagine where he gets it from?

Now, we work on recovery. He is currently on Motrin every 6 hours for pain. And that seems to be working. Except that I have a firm policy that, unless a kiddo is running a fever (or the med can be given via iv), I will not wake a sleeping child up to give them pain meds. Well, Bodie peacefully slept 11 hours straight (in the same position) last night, so woke up looking like the Stay Puft Marshmallow Man and in a LOT of pain this morning. 
(See - you can totally see the resemblance, right???)

Mornings are tough. We end up in a 2 hour cycle of him feeling too yucky to take pain meds, then finally getting him to take them, then having to wait for them to kick in, but then not wanting to eat which makes him feel even worse. And then he feels yucky while we wait for his Lasix (diuretic) to kick in and get the fluid off of his face. It took about 2 hours to get meds in and working and enough food on board to perk him up. He's now running around the house, chasing the cat and throwing things. So, I may rethink my "no waking for meds" policy at least for the next couple of days as we work through his post op pain.

We so appreciate your prayers leading up to and during Bodie's hospital stay. It was one of the most frightening admissions we have had. I have not written much about the seizure, and may not ever - we'll see. But trust that, while he does not remember and has no after effects, I will never forget. His seizure was absolutely terrifying. I have to take great efforts not to think about it. I find myself ever grateful that we already have a wonderful family therapist who can help me work through the new PTSD I've now added into my already overloaded nervous system. 

As we move forward through recovery, please help pray for:
1. Bodie's incisions to heal (both his thoracatomy scar and his chest tube scar - any heart mom will tell you that chest tubes are not for the faint of heart!) without complication or infection.
2. For us to remain on top of pain meds so that Bodie consistently feels better.
3. He is still having breakthrough runs of EAT (the atrial tachycardia, which was the whole reason we did this surgery). This, while disheartening to Dusk and I, does NOT mean the surgery didn't work. Big picture - if he has less EAT than before, then surgery was a success. Inpatient, he had significantly less than before. This morning, he seemed to have a longer run, but I don't have him on continuous monitoring, so I don't know for sure. Our hope is that, the further out he gets from surgery, and the more healed his body is, we will see less and less EAT. Once we get to his baseline (a few weeks or month out), then we can do a holter monitor and really see where we're at. Please pray for continued decreased in his EAT. 
4. He is still holding onto a little fluid (which all settled into his eye sockets, clearly!). Please pray the small doses of Lasix we're giving him will help expedite its exit from his system.
5. Please pray that any side effects of surgery lessen over time.

Thank you always for praying for our sweet boy!

Monday, August 22, 2016

Forward progress

Almost 48 hours post-seizure and it appears Bodie has suffered no adverse affects - praise God! We still are not 100% certain, but we are all assuming that it was a med interaction/toxicity issue, likely a combination of Morphine and the nerve blocker he was on through his epidural line. It is odd to discover this at surgery #6, but it became very evident by yesterday morning that his body does NOT like Morphine. He was reacting with a serious "Morphine rash," itchiness and hallucinations. So we stopped all narcotics yesterday morning and spent the day waiting for them to get out of his system. 

Between the seizure hangover and the narcotic wean, let's just say that yesterday was a ROUGH day. Lot of tears. Bodie tends to be emotional anyway, but it was his baseline x 100. I mean, sobbing, silent tears because he thought he had lost a Lego (he hadn't), the Lego instruction book was missing pages (it wasn't) or we couldn't see "the two moving black things" (in our defense, we couldn't, because 1) there was only 1 and 2) it wasn't moving). So, yeah, walking on eggshells all day. Bless Sierra's heart - she came to visit and didn't even care that Bodie was being a total butt to her. She just kept saying "it's ok, he just had surgery. He'll get better." Bless her heart.
After finally getting everything out of his system, he had a really great night's sleep last night. Today has been much better, including a move to the step down unit and finally starting to eat!
Our challenge now is getting all of his meds changed to oral meds, so that we can go home on them. Additionally, they loaded him with fluids following his seizure and he's taking his sweet time holding on to them. As a result, his oxygen saturations are lower than we would like and he is requiring oxygen. We are adding an IV diuretic in the hopes that we can get the excess fluid off of him quickly. Please pray that we can get the fluid off, ditch the 02 and get on home meds! Finally, we are wrestling with some unexpected complications specific to the surgery he had - please pray they are minor and we are able to cope with them and move on. 

Thank you for continuing to pray for our sweet boy! 

Sunday, August 21, 2016

Morning Update

Bodie had a really good night and, for the most part, slept peacefully. He has woken up a few times and is totally coherent, able to ask to play with Legos and remember our visitors yesterday. He is cranky, but he is here and doesn't have any apparent neurological deficits. Praise God!!!!

The challenge we're facing at the moment is that, prior to the seizure, Bodie had an epidural cathether in his back, providing continues pain relief with a nerve block. This tends to make recovery from a thoracatomy easier. When the seizure happened, they pulled that line, in case it was the meds running through that line that caused the seizure (we won't know this for some time).

So now, he's without continuous pain meds or nerve blocker - and he's in considerable pain. They're treating it with morphine, which is causing him to itch something fierce (and makes him kinda loopy and sedated while it's at it.) Today, we're working on finding another pain management option that 1) does not make him itchy and 2) does not snow him under.

Please pray we can manage the pain and itchiness, and hopefully get him up and moving later today. We still do not know why the seizure happened (although the med cocktail certainly seems to be our current frontrunner for causes). Please just keep him in your prayers!

Saturday, August 20, 2016

Pray for Bodie

Bodie's surgery was yesterday and by all accounts, seemed to have been a success. We won't know for a bit whether it really did what we were hoping, but it seems to be have been good for him for now at least.

His recovery has been pretty good, working through pain and nausea issues. He seemed to be turning the corner this afternoon, eating more and playing more. I thought we were making progress. Unfortunately, tonight, as he and I were snuggled in bed watching a movie and playing with Legos, he had a seizure.

We do not yet know what caused the seizure (or how we can stop them from happening in the future), but will hopefully know more soon. We did have a CT scan done post seizure, and the preliminary results look good (no brain damage). We are still waiting for neurology to read the report, but the preliminary reads by cardiology are good.

Friends, Bodie really needs your prayer right now. He is currently sleeping off the seizure, and we expect that to last 2-4 hours. Once he is awake, we can do a full neurological assessment to assess any damage.

Please pray:
1. He wakes up with no deficits.
2. We are able to pinpoint the cause of the seizure, and avoid it in the future.
3. Peace for all of us as await answers.

We will update when we know more.

Wednesday, August 17, 2016

Worst anniversary present EVER.

3 years ago this Friday, on August 19, 2013, our sweet boy had his pacemaker replacement surgery, just 4 days after another open-heart surgery. It was a scary time, but the surgery was a success and really got him on the path to Fontan recovery. 

So, to celebrate his "pacerversary" (that's now a word, in case you didn't know), we're giving Bodie...

(Yayayayay! Aren't we seriously the best parents ever???)

Yep, Bodie's surgery that was supposed to take place next week got bumped up to THIS Friday (as in less than 48 hours from now). The rescheduling has been a monumental pain in the butt from a scheduling perspective, but we're trying to roll with it. The bigger concern was that Bodie has nasal congestion, so it has been up in the air all week whether surgery was going to happen.

But we had pre-op today and because his viral panel came back totally clear, he has no other symptoms, his chest x-ray looked great and everything else looks good, surgery is a GO. 
So, yes, not only did we give him an anniversary gift of another surgery, but we toyed with him all week, going back and forth all week about whether said surgery was even going to happen. Life in our house has been SUPER fun this week, let me tell you. Don't you wish you had parents like us???

It's been an exceptionally stressful week and not where we optimally want to feel going into surgery. But it's where we're at. So, as we head into surgery on Friday morning, we appreciate all the prayers you can send our way!

Please pray for:
1. Bodie to go into surgery in the best health possible, for his remaining congestion to clear up.
2. The surgery to go as smoothly as possible.
3. Bodie to have the least amount of pain possible post-operatively (this is probably the biggest request, since we are going into this surgery knowing that it will be a painful recovery).
4. Safe travels for Grandma Jan and Popo Alan, who changed their flight reservations to accommodate the rescheduled date.
5. Calm nerves for ALL OF US!

As an aside, every morning over the past few weeks, first thing in the morning, Bodie would rush to the calendar in the kitchen, wanting to count down the days until surgery (unlike the rest of us, he's pretty excited about the surgery). I wanted him to stop so that I could take a picture of him pointing to his surgery date. 

He was totally uncooperative, and wouldn't point to the 23rd. 
Can you see what day he is pointing to? 
The 19th.
Well, duh.

Except that this picture was taken on August 10.
The day before we got the call about rescheduling.
Crazy, right?

Clearly, Bodie has known all along that August 19th was his surgical date.
It would have been nice if he'd have let us in on the secret.
Just sayin.

As always, we covet your prayers over our sweet boy, his surgical team and our entire family.