Thursday, January 30, 2014

When the little things aren't so little...

Sometimes, I wish little things could be just that for Bodie. Little things that don't hold much meaning. Instead of being little things that hold great, big meaning for a kid with a ½ a heart.

Bodie has complained a handful of times over the past month about his belly button hurting. He has the most sensitive skin on the planet. Seriously. And belly buttons are just weird and sensitive anyway. So we figured it had just rubbed on his clothes and didn't really think much of it.

Until yesterday, when he REALLY started complaining that it hurt and it started getting red. Uh oh. My ptsd laden mind went immediately to Eli's story, how his pacemaker infection went away and then came back 3 months later. All I could think was about was the proximity of his belly button to his pacer and "is that the pacemaker infection? is it coming through his belly button?" Needless to say, I was pretty unsettled.

So today we went to his pediatrician, who said he could't tell whether it was infected or just irritated, but that he thought we should have the CT team weigh in. So, a picture and 2 phone calls later, we had the directive from CT surgery that they wanted to see Bodie today. So, I packed a bag (fully expecting to be admitted), picked both kids up early from school and trekked the 90 minutes from Venice to Hollywood. Yes, 90 minutes to go 13.93 miles. After that drive, let's just say I totally get why people have road rage. Gotta love LA.

When I was driving and my thoughts weren't drowned out by Bodie's "I didn't take a nap so I'm therefore going to be pissed at everyone and everything that is not going EXACTLY as I wanted" screaming on said 90 minute drive, I was remembering the last time we drove up there for the CT team to "take a look" at a potential pacer infection. I was thinking about how that visit ended with an admission, a picc line and 6 weeks of iv antibiotics. My mind was absolutely going through the worst-case scenarios. Ptsd much?

The NP and the surgeon both looked at it and the general consensus seems to be that it's not related to his pacemaker (in layman's terms, the kid probably shoved a dirty finger into an itchy belly button to scratch it and infected it). Thanks a lot, Bodie. But, because he IS Bodie and because this IS a pacemaker we're talking about here, they wanted to be conservative (heck yeah, we're so totally down with that!), and start him on a short course of oral antibiotics. And we're to bring him back if it looks like it's getting worse, he starts running a fever, etc. 

Thank God it didn't result in an admission and thank God we didn't have to have discussions about how deep this infection could possibly be and the implications of that. We're feeling very grateful for that tonight.

But it struck me, as I was driving home, how hard this life with a CHD kid is sometimes. Most of the time, the little things for typical kids are also little things for Bodie - a cold, an ear infection, a random virus. Whatev. He takes a licking and keeps on ticking. He's tough. But then, I find myself unexpectedly driving like a madwoman through the streets of LA racing up to CHLA for an irritated bellybutton??? and I am reminded once again that Bodie's life will always be a little different than his peers. And that makes me sad.

Apparently, I'm the only one hanging at this pity party.
Cause this kid, he ain't got time for pity. He's too busy living and loving his life.

Thank God for that. 

Tonight, please pray for continued resilience for Bodie. Please pray that this is just a silly belly button thing, and not an indication that his pacemaker infection is back and more virulent than before. 

Pray for the little things to get a chance to just stay the little things for our sweet Bodie. 

Thursday, January 23, 2014

There but for the grace of God go I...

I've been saying this a lot this week.

When they admitted us for Bodie's pacemaker infection and went over all the possible risks, they included some VERY bad worst case scenarios. We're watching a friend in the heartland living out those worst case scenarios right now. 

A sweet little guy, Eli, Bodie's age, who had his Fontan almost a year ago. He has been battling a pacemaker infection almost since then. He's had several rounds of iv antibiotics, but they weren't successful at keeping it away. Staph Aureus - the same strain that Bodie had. And the infection originated in his pacemaker (just like Bodie), but, unlike Bodie, his wasn't superficial - and it spread to his Fontan conduit. 

On Tuesday, he was in the OR for 7-8 hours (on bypass 4 of those) having his Fontan revised and his pacemaker removed. This was exactly what CHLA warned us about, and their whole rationale for treating Bodie so aggressively even though his infection appeared only superficial in nature. Eli has been struggling since surgery and has been having seizures. They're now thinking he may have had a stroke. My heart is so heavy for this family tonight.

CHDs are awful. And to see one of your worst case scenarios play out in a fellow heart patient is horrible. Absolutely horrible.

I have so much sadness for this family, for this hardship they shouldn't have to be facing. Eli is post-Fontan. This is supposed to be the good part, where you don't have to worry so much anymore, where you get to enjoy life. It is so profoundly unfair that because of a stupid infection they're facing this. 

And I have so so so much guilt. Truly, that could have been Bodie, in the OR 2 days ago. It almost was. And that could be me by his bedside, hoping so desperately for a sign that my sweet boy is still in there, somewhere, just waiting to come back to me and fight back against any odds thrown at him. Instead, my son lies beside me, in his firefighter jammies, the rhythm of his sweet breath music to my soul. I get to worry about whether he'll throw a dramarama fit at preschool drop off tomorrow (I'd say the odds are good), and whether he'll like t-ball when he starts next month. 

Why Eli is in the hospital fighting for his life and Bodie is not, I'll never know. Why God chose to let Bodie off the hook with only 6 weeks of iv antibiotics, I'll never know. The bottom line is, we got lucky. 

For now. 

What a horrible thing to be, to feel. 

But it's true. In the CHD world, every hurdle you cross, every surgery you get through, every moment in the land of peace, with your worries abated, is for now. My heart knows that this is just a temporary peace. There will be more surgeries for Bodie. Maybe just "simple" ones like pacemaker battery replacements. Maybe more serious, like valve repairs, and open-heart surgeries. There will be more cardiac catheterizations for Bodie, most likely in the coming months. There will be a heart transplant in Bodie's future. Someday. Unless we get lucky and a better alternative comes along. But that alternative will most definitely include open-heart surgery. Heck, for all we know, Bodie's pacemaker infection is still brewing under the surface. He certainly doesn't seem to be showing any signs of it, but if we know nothing about medically fragile kids, we know this - they can look perfectly healthy and yet be brewing crazy, scary stuff under the surface. So he may be Eli again in the future. That's what makes this journey so tough.

So yeah, tonight, my heart is struggling. We have so many sweet friends heading into their Fontans in the coming months again, as we head into the spring and summer months, otherwise known as "Fontan season" in the heartland. My heart is unsettled for them. And thinking of Bodie's anticipated cath in the near future, and wondering whether his fenestration closure will be successful. And reading of Eli's struggles, today, I say "there but for the grace of God go I." And pray for many, many, many more days spent in His grace, doing His will. 

I don't ever regret choosing this journey. I am 100% confident that this is where God has called Dusk and I, and Bodie and Sierra. This is our mission field. This heartland, replete with sorrow and pain and constant reminders of all of our mortality, our fragility, and our need for a Savior who transcends all that. We know this is where we've been called to be. But some days this mission field is harder than others. For us, there's no escaping it. There is no going home. Our mission field is all around us. It is in us. It's exhausting. Tonight, we ask for prayer. For our family. For our Bodie. 

For Kellen and Ella and Lucas and Zoe and Connor and Cameron and the dozens of other heart buddies who are Fontanning this summer. 

For Evan, who's facing a major heart surgery in 2 short weeks. 

And tonight, most of all, hit your knees for Eli. 


Wednesday, January 8, 2014

Building our Bucket List

At my MOPS meeting this month, we talked about building blueprints and mission statements for our families. Both great things I'm ruminating on and praying over. We also talked about building a family "bucket list" of things we want our families to do! What a great idea!

Had we done one, our 2013 bucket list likely would have included things like "get through the Fontan" and "graduate from kindergarten," and not the bonus things we actually ended up getting like "an extra heart surgery! Woohoo!," "let's replace both of Daddy's hips" and "robbery resulting in a complete invasion of our privacy and a 6-month battle with the insurance company."

So, we're taking a chance that 2014 will be more mellow and bring better things than 2013. In an ode to that "normalcy," we've created a Bennett family bucket list of things we'd like to do this year.

After a few ideas got the axe ((1) my idea of projecting a movie in our backyard and watching it outside got axed by Daddy probably because he'd be the one to have to get the whole darn thing set up, (2) Daddy's idea of going to Mexico got axed by me because, really, a super complex heart kiddo known to throw crazy stuff at us in Mexico? thanks and (3) Sierra's idea of no junk food for a week got axed by everyone else because, seriously, how is THAT fun?), we came up with our semi-almost-I-think-we're-close-to-final Bucket list:

1. Have a family game night.
2. Complete the library summer reading program (we've started and stopped it the last 2 summers).
3. Do an intentional service project as a family.
4. Go camping (somewhere other than our backyard).
5. Take the kids to the Long Beach aquarium (Bodie's never been and Sierra hasn't been in years).
6. Take the kids to the California science center (space shuttle, anyone?)
7. Have an electronics free weekend (long overdue)
and finally (the one I am most excited about):
8. Take a family trip to Yosemite!!!

So, there you have it. Our ode to "2014 is going to be a better year than 2013!" Here's hoping that rings true for us! What's on YOUR family bucket list???
P.S. These pictures were all taken by the amazing Brenda Munoz. You can see more at A Doll and a Superhero. Thank you, Brenda!

Wednesday, January 1, 2014

Goodbye and Good Riddance, 2013...don't let the door hit you on the way out

Man, 2013 was a doozy for us. I don't think we've ever been SO glad to see a year end and move on with hopeful expectation toward a new one. 

But at least we ended it with style...

We had Christmas celebrations galore...
including getting to see Santa not once, but twice - when he came to our neighborhood!
Bodie had his Christmas pageant at school - he did so well. He stood up there, so proud and excited for almost the entire thing. 
I may have shed a tear or two out of such pride for my sweet boy. Or, who knows, perhaps they were tears of gratitude that he wasn't screaming his head off for me the entire time, which is how I had expected it to go down. But whatevs. Let's just call them tears of pride. 

Popo Alan and Grandma Jan came to help for Dusk's surgery - and to spend some time with us! The kids had a blast with them. 
And we got to see Popo Bill and Gigi for a Cal Poly vs LMU basketball game
and a quick dinner 2 weeks later!
(yep, I'd say that about sums up life with Bodie!)

Apparently, Sierra just plain grew up in the past month...
(I'm still trying to figure out who this grown up girl is!!!)

She also got to make homemade taffy with Dusk (a wonderful childhood memory of his!)
We had a wonderful visit from our dear friends the Fullers.

And started the year in style with our close friends the Hunts, with a visit to the Santa Monica Pier to celebrate New Year's Day!
1/2 a heart and loving riding roller coasters - take that, HLHS!!!

As we usher out the craptastic year that 2013 was and enter 2014 with hopeful anticipation, we covet your prayers that the next year brings more peace, more healing, less hospital time and slower days for our family - and for yours. 

Merry Christmas and Happy New Year from our family to yours!