Saturday, November 8, 2014

Next?

Over the past five years, it always seems that just as the dust begins to settle in one area of Ethan's care, we find ourselves turning our attention to another.  The day after his birth, after doctors had diagnosed his heart defect, I remember being in a room with one of the pediatric cardiology fellows and asking when we'd get to discuss all the other things that needed fixing on Ethan's tiny, beat-up body.

"We've got to take care of his heart first", he gently explained. "It will probably be a while before we can talk about everything else."

While I knew that to be true in my head (none of that other stuff really mattered if his heart wouldn't work), my less-than-logical side wanted every doctor in that hospital to be in the room with my son, fixing all that was broken.

Of course, y'all know the story.  Ethan's heart did work (even when it "shouldn't" have) and we eventually got the chance to address the other challenges he was facing.  The result of that was about a dozen surgeries and procedures before his second birthday and a lifetime of follow-up appointments with some of the smartest doctors in the country.

After the initial surgery on Ethan's arm, and the traumatic nerve repair that followed a few months later, his hand has been the least needy area of his care. We see his orthopedic surgeon once a year, take a few x-rays, and teach Ethan how to button his pants and put on socks in between visits. The possibility of future interventions have been just that -- in the future. It never occurred to me that, just three months after open-heart surgery, we could be talking about yet another surgery to increase the functionality of Ethan's left hand.

But we are.

At Ethan's yearly visit in October, his orthopedic surgeon noticed that Ethan has developed substantial muscle and range of motion in and around his left index finger (yes, the one that was partially amputated during the nerve repair). The surgeon said this is unheard of, based on the surgeries and trauma Ethan's left hand has been through, but was incredibly promising.  He began to brainstorm with us about all the possibilities this opened up for Ethan and referred us to another hand specialist/surgeon at Duke.

We met with that surgeon a few days ago and the ball is now rolling towards the direction of one more operating room. The idea is to rotate Ethan's left index finger into a thumb position, thereby giving him the ability to have a pincer grasp on his left hand.  This is only possible, however, if Ethan's hand has all-of-the-tendons in all the right places. A MRI would be the best way to find that out (but, pacemaker), so Ethan will be having an ultrasound of his hand on Friday to try to gain information that way. The results of that ultrasound will determine which surgical options we have, if any, and how to proceed.  We'll meet back with the surgeon the Tuesday before Thanksgiving to go over all of that, and hopefully head into the new year with a plan.

I'm not gonna lie. All of that put me in a bit of a funk after leaving the appointment. I was aggravated with scheduling appointments and shuffling commitments, nervous for what will come of all this, and sad that this is even Ethan's reality.

But, God.

He spoke truth into my ugly heart, comforted me, and reminded me that we're not going at this alone.  He hasn't left our side a single second since we stepped on this crazy train five and a half years ago, and His faithful, unrelenting love shows no signs of stopping anytime soon -- not anytime ever.  He has crafted every tendon, nerve, and artery in Ethan's body and knows him better than any surgeon at any hospital -- better than us, even.

Now, instead of feeling sad or fearful, I feel burdened.  I want Ethan to see that truth, too; I want him to experience it and know it and come back to it all throughout his life.  I want him to see a bum arm and a bad heart and see Jesus.  I want to see it that way, too; not just in hindsight, but in the moment. Instead of being annoyed with scheduling one more appointment, I want to see that appointment as an opportunity to say, "just look at what the Lord has done!" I want to use this season He has placed us in to display His glory, whether that's at the park watching Ethan climb ladders or sitting in an uncomfortable chair awaiting results of another surgery. It's a lot easier to say (and really easy to think) than to actually do, but I'm trusting that God will give me the grace I need in the moment to live my life in this way.

I'm also asking Him for clarity (is that our word of 2014, or what?!) as we move forward with these appointments. I made it very clear to the new surgeon that our goal for Ethan is functionality.  If Ethan's hand, as it is today, is at maximum functionality, then we have no desire to proceed with any other surgeries for cosmetic reasons -- that will be a decision Ethan can make when he is older.  However, if a future surgery can increase the function of his left hand and benefit the way he interacts with day-to-day life, then that is something we'll need to strongly consider.

So. We will see what the ultrasound shows next week and go from there. We're not sure what's next for our boy, but we would absolutely love your prayers for our family and Ethan's medical team as we enter into these appointments and conversations over the next few weeks.

(Is he the cutest x-ray patient you've ever seen, or what?!)



1 comment:

Madalyn Oconnell said...

You have a very brave boy. You are blessed to have him and I know things will be ok. My husband and I have also recently had children and we see it as such a great blessing from the lord. It really is a journey raising children. One that makes us better as people. Thank you for sharing this. Thanks.

Madalyn Oconnell @ Steadman Hawkins Clinic Denver

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