Even If

"They say sometimes you win some, sometimes you lose some..."

Post-op first surgery

This. This is how we've felt this past week. A week ago Wednesday we were just returning home from the hospital following a much longer surgery than planned. Per what we were told that night before we went home, we were anticipating Jordan being extubated Thursday but it didn't happen...and then Friday...and then finally Saturday was the day.

It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now

Within minutes though of taking him off the ventilator, it was obvious something wasn't right. He was reintubated within minutes after his pressures dropped and his oxygen levels dropped to the low 30s and 40s. The epinephrine that was administered caused his healing heart to go into overdrive at over 200 bpm. It was terrifying.

But. Just as the nurse was seconds away, if not milliseconds, from administering a medication to return his heart to normal sinus rhythm, his heart rate dropped to the preset 120 bpm per the pacemaker. Just like that.

We do not believe in coincidences. We believe in a God who answers prayer. And we know people all over the world were praying for our son.

Although, true to form, once that ordeal was over with, Jordan being Jordan, once again confounded the doctors: he returned completely back to normal, with his body acting as if it should/could be extubated again. There were absolutely no signs that pointed to it not working, yet clearly there was something wrong. No more extubation Saturday, or for the foreseeable future.

Post-op Second Surgery

Sunday morning, the doctors conferenced and decided a CT scan was necessary. He was wheeled off with his entourage and back within a half hour while Derek and I "enjoyed" lunch. The PICU doctor on shift came to tell us it looked as if Jordan had an artery that was bleeding...not gushing, but trickling. That could be what caused the problems extubating--when the tubes were removed, the pressure from the fluid surrounding his heart and lungs caused Jordan's airways to close. We would know for sure shortly once the surgeon reviewed the CT. Derek and I just assumed it would be another couple hours, but no less than half an hour later the surgeon was standing in front of us, telling us Jordan needed surgery immediately to correct the issue. They still couldn't tell us what it was until they were in there, but Jordan would be wheeled down for his second open heart surgery within five days sometime in that next hour.

Yet, they discovered he wasn't bleeding or leaking anywhere--essentially his blood had coagulated too quickly to come out through the chest drain. Again, an answer to prayer? Possibly. This is where it gets tricky. The tests they ran could not 100% conclude that he had a bleed. Fluid doesn't show up on an echo, and his lungs looked clear on every x-ray. Who knows? But prayers were heard and answered, because the surgery was less than two hours and they were able to clear out the entire area of the clot.

However, he had another open heart surgery, and now his lungs were showing a bit of congestion by Monday. No extubation. Rest day.

Tuesday. No extubation. Echo looked great! Heart function fantastic. But no extubation and no plans to do so.

We've hit the highs and all of the lows. Maybe before this we were heart parents, but now...I feel like we've officially been inducted into the club. Passed the initiation. A routine repair that's been anything but.

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

Wednesday. Today. Tonight. Chest x-ray looks good and clear, chest drain is significantly less. And they plan to extubate tomorrow.

So here we are, a week later with Jordan's second extubation planned for tomorrow. How are we feeling? Tired. Worn out. Fearful. Weary. Will it work? If it doesn't, then what? Do we want to be there? How could we not want to be there? How much longer can we play this game? Yes. The longer he is sedated and intubated and resting, the more his body is able to heal. Yet, that doesn't offer much comfort when you see him fight his restraints, or shake his head no to every question, or cry with no sound and you can't pick him up.

But then Jordan reminds us in his more and more frequent moments of awareness that he's still in there. He's not able to speak, yet he's giving the nurses the side eye when he's irritated with them (which is often) and typically it's because he didn't get his way. He broke out of his restraints yesterday and it took three of us to get him situated again. He was determined to roll onto his side, and would not take no for an answer. He almost succeeded in pulling all of his lines out of his neck. He's on the least amount of meds since being admitted for surgery last Wednesday. The nurse said tonight if we didn't get him extubated tomorrow he'd do it himself. So moments like that? They give us the hope we need that the boy who ran toward his operating room to see his doctor friends faster than anyone could keep up with is in there, waiting to tell us anything and everything once he's extubated. He's still our fighter

And if not? If tomorrow doesn't go as planned?

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

And so. Please pray with us that tomorrow, our boy will turn this major corner. That we can step down from the ICU. That he will be able to breathe and talk and eat and walk...sooner than later.

And even if that's not the case, pray that we will be able to continue to stay positive. That we will continue to believe in God's plan for all of us. And most of all, that we will still praise Him for the work he is doing in Jordan's life.

Good night buddy. See you tomorrow.