Roadmaps

Yesterday was another step completed in the process of pre-surgery tests and appointments.  Even with details and practice, preparing a 5-yr-old for a CT scan can somewhat be a lost cause.  And no matter how much she agreed that she wouldn't freak out, it happened.  It wasn't a freakout of colossal proportions (such as, say, pre-K booster shots of 10 months ago), but it was right on the border between "I think I can, I think I can" and "If you touch me or look at me I might be forced to bite your head right off your neck." When it comes down to it, this girl hates IVs, and can you blame her?

Waiting in the Imaging Department

Silly faces to pass the time

Once she felt comfortable enough, she said she saw Tinkerbelle in the CT machine.  Seems like it would be a suitable place for a fairy, no?  A few quick practice runs and some breathing exercises and she was finally good to go.  Once it came time for her to follow directions in being still and holding her breath, "Super Camdyn" kicked in and she did amazingly.  That's my girl.

Why all these preliminary tests?  Because Camdyn's surgeon needs the best "roadmap" of her heart and chest that he can get...through X-rays, Echocardiograms, Cardiac Catheterization, and now the CT scan.  Hopefully the CT scan will be enough, as opposed to doing a CT-A (CT angiogram).  The CT uses x-ray radiation, but the CT-A looks specifically at the blood vessels.  This is all information he needs in order to make sure that when he reopens her chest, he knows exactly where to go and what's behind.  After 5 years, there's quite a bit of scar tissue built up, and veins begin to grow in different places.  It will take him about 4 hours just to get to her heart before performing the actual procedure itself.  This is the most time-consuming part of the surgery.

They don't normally perform CT-As on young children because it's more time-consuming...so for now, we wait and see if we receive a call to schedule one.  And we'll be off to Pulmonology at Children's on Tuesday to have the last remnants of this cough of hers checked out.

Please be in prayer for Camdyn and her feelings of anxiety and fear.  Please pray for her to be in perfect health, with not a stitch of a cough in sight.  Please pray for us to have wisdom in discussing things with her as well as with her doctors and nurses.  And please pray that there will be space for us to stay at the Ronald McDonald House, so we can be a hop, skip, and a jump away from our Sweet Pea while she recovers in ICU.

"I will never leave you nor forsake you..."

Those words rang clear in my head as we sat in the consultation office waiting for her surgeon to return.  I will never leave you nor forsake you...words of comfort, truth, peace.  His words, written on my heart and resounding in my mind.

"Sometimes I forget that this is our life," I said.
"Me, too."

An over-scale model of a human heart sat perched on the table in front of us, serving as a reminder of the reason for our visit.  It had been over 5 years since we'd been in that room.  I will never leave you nor forsake you...words I needed to hear.  Words of hope.  Words of promise.

The heart model being explored by my little love's hands, Children's Hospital entrance at dusk, and all ready for notes.

We sat in the room with her surgeon for over 3 hours, while he (very thoroughly) reviewed all the details of her next surgery with us, beginning with pre-op procedures, ending with the worst case scenarios, and everything in between.  EVERYTHING.  As he spoke, memories of these conversations filled my mind from just a few years before.  We'd forgotten so much.  HOW could we have forgotten so much?  I think it was by His grace that we had forgotten.  If we had placed in our memories every minute detail of our past experiences with hospital visits and surgeries, we would surely have been overwhelmed with the date of this one looming over us.

June 13th.  That's considered the end of the "honeymoon period" as they call it.  You see, once she has her Fontan (which she wouldn't get far without), she, like any other "Fontan patient," is destined for transplant down the road.  They say its like a ticking timebomb, that it "starts the clock" as to how long and how far they can go before requiring something more.  It could be a couple of years, could be way more.  There isn't enough experience with these procedures to know how the long-term effects will fair.  On average, the oldest patients with these surgeries are only in their early twenties.

Heart transplant.  Did you know a heart transplant is only "good" for up to 10 years?  That was something I learned in this office 5 years ago.

The summer of 2013 for the Kopper Four will be a trying one.  You really don't want to hear words and phrases like "Fontan failure" and "reverse the procedure"...even when you know those are only some of the worst case scenarios.  But our little firecracker is strong and we pray that her spunk and persistence pays off this time, as they did both times before.

I will never leave you nor forsake you...it's not a promise that we'll get what we selfishly desire, that there won't be roadblocks and hiccups and trials, that we'll live long, healthy lives on this earth.  It's God's promise that He is ever-present, unchanging, that He will never turn His back on His faithful ones.  Life is full of uncertainty, but the assurance we have from God is comforting, strengthening, hopeful.  It's the "I-can-persevere-because-of-who-He-IS" kind of assurance to which we can cling. 

With much certainty.  Blessed assurance.

Hi! We're new here...

We never really thought about blogging anything until recently.  Sure, there's some blogs that we like to follow, and we can be downright entertaining at times, but it all seemed a little daunting, to be honest.  That is, until we realized that we had a current and present reason for it.  With our little love's third open heart surgery on the near-horizon, we thought this would be the best and easiest way to update anyone who would be interested in her surgery and recovery process.  It's also a place for us to ask prayer for her (and for us), for specific things she'll need along the way.  I know there's a lot of prayer warriors out there...so if you know some, please share our blog.  Share, share, share.  

Why "Heart, Hope, and a Future" you ask?  It's simple.  It's because the whole inspiration for this blog began with my sweetie's physical heart, and in the process of writing posts about her surgery and recovery status, we'll be sharing our hearts (mostly me), to give you a glimpse of what this world looks like to anyone who doesn't know, and to maybe reach out to someone who knows this world already, so they know that there's hope in our Lord.

The "Hope and a Future" come straight from His word in Jeremiah 29:11 - "For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope"(ESV).  He knows His plan, even though we probably don't.  BUT, our hope is in Him, and He is the one who holds the future.  In an experience where it seems as though we are completely helpless, where our hands are "tied," our only peace comes from knowing that He is in control.

He is the rock.

He has complete sovereignty.

He holds her precious, partially-repaired, partially-functioning heart in His hands.  Come what may.

And for that, we are thankful.