Sunday, August 24, 2014


Keeping up with the details of the past three weeks is like keeping up with the laundry we've accumulated during that time.  I jot down just enough to make sure I don't forget, and wash just enough to make sure we all have clean underwear, but anything more than that just isn't happening! At some point, I will share the specifics of Ethan's post-op stay, but the details of this past stay are begging to be shared first.

But, before I do that, let's catch up on the timeline of events:

Stay #1:
July 29th - cath -- admitted to Duke
July 30th - open-heart surgery
August 3rd - HOME for six days!

Stay #2:
August 9th - emergency department for post-op fever -- admitted to Duke
August 11th - diagnosed with PPS
August 13th - HOME for six days!

Stay #3:
August 19th - emergency department for swollen, tender belly, and fever -- admitted to Duke
August 20th - surgery consult to remove infected pacemaker
August 21st - HOME!

So, how did we go from a surgery consult one day to home the next, you ask? It's a very long story, but I assure you -- you're gonna want to keep reading!

A couple times throughout the morning of August 19th (Tuesday), Ethan complained of pain in his right side.  If he turned a certain way, coughed, or took a deep breath, he'd wince in pain and tell me his side hurt.  Each time he said so, I raised his shirt and inspected his incisions.  Nothing looked out of place, and Ethan continued on with normal activity. I thought nothing of it until the next time he complained.

Tuesday afternoon -- playing happily

Later that evening, right before dinner, Ethan was sitting on the couch and not feeling great.  He didn't want to eat, didn't want to move, didn't want to do anything other than sit and watch shows.  He didn't even want to tell us that he wasn't feeling well.  We finally got him to admit that he was in pain, and Jeramie went over to inspect again.  What he discovered was that the right side of Ethan's abdomen, where his pacemaker sits, was swollen and extremely tender.  He wasn't even able to stand up straight without being in obvious pain.

We knew right away something wasn't right, and within minutes I had talked to both his surgeon (who was out of town!) and the on-call fellow at Duke.  While I was on the phone, Jeramie noticed that Ethan also felt hot to the touch.  I was upstairs at that point, talking to the fellow, and when Jeramie came up to tell me that Ethan's fever had spiked to 102, we packed a bag and drove to Duke -- but not before praying that God would protect our son and ultimately be glorified in whatever was about to happen.

Sunset over Durham on our way to Duke

Ethan slept the entire way to the hospital and looked absolutely awful.  He felt miserable, too, and any movement involving his abdomen caused him to whimper in pain.  We gave him a dose of Tylenol before leaving the house, which was successful in bringing down his fever, but did little in the way of pain management.

We spent all of Tuesday night in the emergency department, running tests and looking for answers.  Any time anyone pressed on Ethan's belly, he would cry and push away their hand.  Labs and blood cultures were ordered, as well as chest and abdominal x-rays.  Around 11:15 p.m., the fellow came into our room in the ED and broke the news to us.  He had been on the phone with Duke's other pediatric cardiothoracic surgeon who, after hearing the fellow describe Ethan's condition, ordered that Ethan not eat or drink after midnight in preparation for surgery the next day.

We were devastated. It is a general consensus in the medical world that surgery to remove an infected pacemaker, treatment for the infection, and surgery to place a new device is one big, difficult mess. It means weeks in the hospital and comes with significant risks.  No one wanted this for our son, but we knew the infection had to leave his body somehow.

At that point, I sent the following text to our family and a few friends...

"Really can't believe I'm typing this.. Ethan will most likely be having surgery tomorrow to remove the pacemaker.  He'll then be temporarily paced externally while he receives IV antibiotics, then he'll go back in to have another generator placed.  We are sad and frustrated.  Things could change overnight and the surgeon may think otherwise once he examines Ethan in the morning.  A miracle would keep Ethan out of the OR."

...and Jeramie and I began fervently praying over Ethan. We prayed big, bold prayers with the expectation that God would answer them.  For me, it sounded something like this: "God, I know you can heal my son.  I know you can take all this mess away right now.  So, do it already and show this hospital who you are."  I can't describe the feeling in the room at that moment, but we knew we were standing on the edge of something huge.

Around 1:30 Wednesday morning, as Jeramie and Ethan were moving to a room on the floor, I headed home to pack a few more things.  When I got back to Duke a few hours later, Ethan was sleeping comfortably and I joined him while Jeramie "took watch".  Around 7:30 a.m., Ethan woke up needing to use the restroom. We helped him out of bed, noticing that he was moving more easily than he had been the night before.  As we helped him into the bathroom, I lifted his gown and stared wide-eyed at his non-swollen belly.  It was still tender at that point, but both he and his belly looked significantly better compared to the night before! Right away, Ethan asked to watch something on TV and we obliged, thrilled to see him feeling better. 

Not long after he had woken up, the surgical NP stopped by to examine Ethan. She was slightly confused, given that what she was seeing that morning didn't match up at all with the report from Tuesday night.  A few minutes into her exam, Dr. L (the surgeon) walked into the room.  He shook my hand, looked at Ethan, looked back at me, looked back at Ethan (sitting up happily in the bed) and said, "So, what's going on here?"  The next words out of his mouth, after looking Ethan over were,  

"I'm not taking this kid into the operating room today."

He went on to tell us that children with raging infections don't look like Ethan did that morning, and that he was expecting to see a very different child lying in the hospital bed. 

In order to find out what the team needed to treat, he ordered that Ethan stop receiving IV antibiotics (he had gotten one dose of two different antibiotics at that point), and that we stop giving him around-the-clock Motrin that had been prescribed for the PPS.  He explained that an infection that required surgical intervention would "declare itself" within a day or two and would be fighting to find its way "out". With Ethan's chest tube site and JP drain site not yet fully healed, the infection had ample opportunity to ooze -- something we hadn't seen at any point during Ethan's recovery.  Right before he left, he described himself as "underwhelmed" by the whole situation and assured us that was a very, very good thing.  I clapped my hands and told Ethan God had given us the miracle we prayed for.

No one could believe the difference Jeramie and I saw in Ethan from Tuesday night to Wednesday morning.  I told Dr. L it was literally "night and day".  At that point, the fellow was the only person from the medical team to have seen Ethan both times, and he was shocked and confused when he laid eyes on Ethan during rounds Wednesday morning.

Later that afternoon, Ethan was sent down to radiology for an abdominal ultrasound. Another possible cause of Tuesday night's symptoms was that Ethan had a hernia push through and cause his pacemaker to bulge.  We were warned that it would be difficult to diagnose a hernia in the fascia behind the abdominal muscles because of the pacemaker itself.  It would not be easily seen via ultrasound, but there were things Ethan could do (cough, crunch his abdomen, etc.) that could give the radiologist decent images.

Ethan was very cooperative throughout the ultrasound, thanks to a decreasingly tender tummy and Ativan.  He coughed, crunched, and stayed perfectly still while the sonographer scanned his abdomen and the radiologist watched over her shoulder.  They were able to rule out any issues with his appendix, noticed no fluid build-up or abscess, and saw no indication of Ethan having a hernia.  In other words, the findings were completely normal.  At one point during the scan, the radiologist was talking through the events of the past day with us and said,  

"Everything I see is totally normal. At this point, it must have been a hernia that you saw on Tuesday night because a pocket of infected fluid just isn't going to spontaneously disappear over night."

As I'm looking into the eyes of this intelligent man, listening to him search for natural causes and explanations, I look out the corner of my right eye and see Jeramie's head turn towards mine.  I smile as I continue to listen and, in that moment, I've never been more certain that we've witnessed a miracle.

Unfortunately, during Ethan's ultrasound, he spiked the highest fever to date in his recovery -- 102.8.  The phlebotomist came in to draw more blood for labs and cultures, and the fever persisted for a few hours.  We resisted fever reducer at first, because we wanted to see what his body would do on its own, but eventually gave him Tylenol around 8:30 that night. By 9:00 it was down to 99.5 and it remained normal for the reminder of the night.

Snuggles, Frozen, and BlowPops on Thursday morning

On rounds Thursday morning, we learned that even during Wednesday's fever spike, Ethan's blood work remained normal.  There were no markers for infection and the blood cultures from Tuesday night were still negative almost forty-eight hours later.  The team did note that one indicator of inflammation had increased during the fever, which was in-line with PPS.  They suggested that we stop the Motrin treatment completely, change over to steroids, and once again "squash the fly with a sledgehammer".  Thinking that they would want to monitor Ethan during the switch, I asked, "So, that means home... tomorrow?"  With smiles, the team looked at each other, looked at me, then said,  

"Nope. Today."

They went on to reiterate that the infection would have reappeared by that point if it was going to, and that with every passing day Ethan spent in the hospital, he only increased his chance of catching something else.  Given that he would be starting a high dose of Prednisone, which would compromise his immune system, they (and we!) wanted him out of there sooner than later. I grinned at them like a kid in a candy store, clapped my hands, happy-danced in the hallway, and declared God's glory among Ethan's medical team!

Now, I would be lying if I said I closed the door after rounds and had complete and total confidence that Ethan was fully healed.  Almost instantly after rounds, I began to doubt and fear.  Satan desperately wanted to rob us of the joy we were feeling in that moment and surely wanted to steal the Lord's glory.  I laid my head on Ethan's bed, confessed my lack of trust and belief, and worshiped in adoration of what God had done over those two days -- from negating the need for emergency surgery to safely sending us home.

So, what now? We have been home since Thursday evening and Ethan hasn't even come close to spiking another fever.  He is on Prednisone until tomorrow to treat the residual PPS and hasn't complained of side or belly pain a single time.  In fact, he did a handstand (a handstand! three weeks post-op!) on our couch last night during a family dance party and proudly declared, "And it didn't even hurt!"

What's interesting is that Ethan's discharge paperwork states that he was in the hospital for an "infection of the pacemaker pocket", but that we went home without treating said infection.  While he did receive those antibiotics overnight between Tuesday and Wednesday,  it's understood by everyone involved that two doses of medication don't have the power to wipe out an infection of that caliber -- but I know Someone who does.

We are in awe of our God.  We trust in his sovereignty and we are humbled that he saw fit to give us the miracle we begged him for.  During a week of so much hurt and loss in the world of heart defects, I don't pretend to understand why we got a "yes" while others got a heart-breaking "no". But I do know that the events of Tuesday and Wednesday have led me to a place of gratitude and humility, and is yet another spot on this journey where we can pause and confidently say,

"Look what the Lord did there."

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