Thursday, August 28, 2014


If a picture is worth a thousand words, the following photos would speak of...




For this child we have prayed, and the Lord has granted us what we asked of him!
-1 Samuel 1:27 

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."

Friday, August 15, 2014

Home (again).

Wow -- what a week.  After any major surgery that comes with a substantial recovery time, we know that readmission for any number of reasons is always a possibility.  Did I really think that we'd end up back at Duke, less than a week after leaving the first time, though? Nope. We are so tired, but so grateful to be back home.

Ethan was discharged (again) on Wednesday morning, after having stayed the exact number of days in the hospital as he did for post-op recovery.  Sadly (for all of us), a 48-hour infection rule-out turned into another four-day stay due to some dehydration issues.  After Monday's results, everyone expected we'd be out of there by Tuesday morning.  But, nope.  It was determined on rounds Tuesday that Ethan's fluid intake (and subsequent urine output) was uncomfortably low, so we earned ourselves another day's stay. At one point on Tuesday afternoon, I looked at Jeramie and sighed, "How did we do this for nine and a half weeks?" Of course, I know it's by the grace of God that we came home after those long two months, and that we brought our boy safely back home again after these two shorter (yet still stressful) stays.

But. The unexpected nature of this week's visit did something crazy to my typically calm hospital demeanor.  At one point in the early hours of Tuesday morning, after I had silenced Ethan's monitor alarm every fifteen minutes, I stood at the head of his bed and watched him sleep, but couldn't keep myself from wondering if he was going to go back into cardiac arrest.  The sounds from the monitor were the same, the "alarm fatigue" was the same, and I was looking at the face of the same healthy (or so we thought at the time) little boy.  In my illogical, sleep-deprived state-of-mind, the next step was that his heart would stop.  After a time of prayer, cussing at the monitor, and having an early morning visit from Dr. I (Ethan's primary cardiologist), I finally allowed the Lord to calm my heart and trust that Ethan truly was okay.  That incident put me on edge for the rest of the day, though, and finding out that we weren't going home that afternoon was a punch to the gut.

But, God.

He sustained us and showed us such goodness that, even during those dark moments, I knew we weren't fighting this alone. A few of my favorites...

-For all of Ethan's IV pokes and blood draws (three total) from Saturday night in the emergency department, until we were discharged on Wednesday, the nurses and phlebotomists were able to gain access on the first try.  This is unheard of for Ethan's previously tiny, easily-blown veins!
-When Ethan was admitted on Saturday night, he was taken to 5317 -- the very first room we lived in once he was healthy enough to leave the PCICU as a baby -- and Shannon was his nurse.  I wrote about Shannon back in April of 2009 .  God sent her to us then, and He sent her to us again on Saturday and Sunday nights.
-Dr. I was in the hospital just about every day of our stay.  I can't adequately explain just how the Lord uses him to comfort us, but he always stopped by at exactly the right times, always bringing just the right balance of doctor and friend.

...and there's even more than that.  Visits from friends, ice cream in the courtyard, "wishing" in Jesus' name at the coin fountain.  God not only took care of the medical details, but he gave us exactly what we needed emotionally, as well.  He is so great, and greatly to be praised!

So, now we're home and keeping a close eye out for any signs of infection.  As of Wednesday night, Ethan's blood cultures were still negative and his incisions continue to look better and better.  He is still spiking fevers anywhere from 100.5-102 degrees in the late afternoons, but Dr. J (Ethan's surgeon) assured me that this is all in line with PPS.  Ethan also wore a Holter monitor from Wednesday to Thursday, and we should have those results sometime next week.

We are praying that this is all behind us soon and that Ethan starts to feel the benefits of the surgery.  We would love to have your continued prayers for rest and recovery -- we are determined to end this summer healthy and happy, with some much needed "normal" family time!

Thank you (again) for your prayers and encouragement -- we love y'all!

Monday, August 11, 2014


Today has been a very (very!) long day.  Ethan slept well last night and managed to sleep-in until 8:15 this morning! We hit the ground running as soon as he woke-up, though.  By 10:00, I had met with the NP, Ethan had his blood drawn, and he was sent downstairs for an echo. Once we got back to our room, it seemed like every time I closed the door, someone else was knocking on it. Thankfully, Jeramie's mom came to visit and she and another friend entertained Ethan while I took a much needed shower.  The hospital life is far from glamorous.

During rounds, we learned that Ethan's labs looked better overall compared to Saturday night's numbers. This is very good news! He will have more blood drawn tomorrow and, as long as those numbers look better than today's, we should be able to go home -- praise the Lord! We also found out that the abdominal ultrasound looks fine, apart from some expected inflammation, and that nothing has grown on his blood cultures yet. Tonight will mark 48 hours of IV antibiotics, so I'm hopeful that whatever this is is on its way out.

So, what is it? Dr. J and Dr. I think it's a post-op syndrome known as post-pericardiotomy syndrome (PPS). Unfortunately, there's not a specific test that can prove this, but everything seems to point to it being the culprit.  The good news is that it's an inflammatory syndrome that's treated with ibuprofen (and possibly steroids). We'll learn more about that plan on rounds tomorrow.

Tonight, I am thanking God for a day of good news! Dr. I came and sat with me and Ethan for a bit this afternoon, and the Lord used him to provide a great deal of comfort to me.  There have been many moments like that scattered throughout this stay and I'll be sure to share those details soon. For now, know that God is good and we are thankful. Tired, but thankful.

Thank you for your continued prayers!

Sunday, August 10, 2014

We're back...

Hey friends. If you've been following along on Facebook, you know that Ethan has been running a low-grade fever since Thursday afternoon. He was seen by Dr. J in clinic on Friday and everything looked a-ok -- chest x-ray, labs, incisions all checked out just fine!

However, Ethan's fever spiked to 102 degrees yesterday afternoon and we brought him to the emergency department around 8:00 last night with bags packed.  They started an IV, drew labs and blood cultures, analyzed his urine and ordered an abdominal x-ray. We were brought to a room around 11:00 and we'll be here until at least Tuesday morning.

On rounds this morning, we learned that his CBC levels are elevated compared to Friday's levels, which is a bit unsettling, but that his abdominal x-ray and urine analysis looked okay. The plan is to let him rest today, get an abdominal ultrasound, and draw more labs tomorrow. The team is watching the cultures for any growth and he is on two different (and very strong) IV antibiotics, which he'll be on for at least 48 hours.

If tomorrow's labs look okay, and nothing has shown up on the cultures, we'll be able to go home Tuesday. If the labs are unchanged, or trending in the wrong direction, we'll be here for a week.

The concern is that there could be a possible infection on Ethan's pacemaker hardware, hence all the abdominal testing.  As the attending said this morning, we may be squashing a fly with a sledgehammer, but it's a considerably better plan than having to open him back up to clean out an infection that was allowed to run rampant.

Please pray for us. Ethan is actually excited about sleeping in the hospital again, but I can't say Jeramie and I are as thrilled. We covet your prayers and continue to be so encouraged by them!

Thursday, August 7, 2014

The Details -- Surgery Day

I know I must sound like a broken record, but it's mind-boggling for me to think that Ethan is now eight days post-op and we have been home for half of that.  I've spent a lot of time re-reading posts from Ethan's first couple months of life, and I stand amazed at what God has done -- then and now.

This blog, originally thought of as Ethan's 'baby book', has morphed into an Ebenezer of sorts.  It's where I go when I need to be reminded of God's faithfulness.  It's five years worth of stories and answers to prayers.  If you find yourself with extra time on your hands, I would encourage you to go read the posts from April and May of 2009.  Taste and see that the Lord is good!

I want to share the details of last week so that we'll have yet another reference point to which we can come back and say, "See what God did there?!"  It's also super helpful for me to document the medical details of Ethan's care, as they serve as puzzle pieces to the ever-growing picture of our son.  From the smallest to the biggest, we know that every moment I'm about to share was ordained by a gracious and loving God!

If the details interest you in the least, read on and celebrate with us! I'll break them up into a couple different posts, starting with his surgery day.

Wednesday, July 30th: Ethan was taken back to the operating room around 8:45 a.m.  He was happy and calm the entire morning and, with a fast-acting dose of Versed in his IV, he was wheeled down the hall with no issues whatsoever.  Me? I sobbed into Jeramie's chest for a solid three minutes before joining our family and friends in the waiting room.

We received updates every hour, beginning with the first incision at 10:30.  We had a slew of people waiting with us, for which I was incredibly grateful.  I would not want to go through something like this without the Lord and our family and friends!

It took quite a bit of time to get through the scar tissue, but by 12:30 p.m. Ethan was on bypass and Dr. J had begun the actual procedure. Replacing the conduit (which could be thought of as a 'reconstruction', but was technically considered a replacement) and replacing the pacemaker battery took considerably longer than we anticipated.  We prayed that Ethan wouldn't have any adverse effects from the prolonged bypass time and the Lord faithfully protected him! By 4:30, Ethan was off of bypass and Dr. J worked on closing his chest for the next hour or so (and did a fantastically, beautiful job, might I add!).

Ethan came out of the O.R. extubated (!!), with one (!!) chest tube, and with a JP drain to keep fluid from collecting in his old pacemaker site.  I caught a glimpse of his tube-free, pink face as the team wheeled him through the doors of the PCICU and, yes, I cried again. We met with Dr. J around 5:30 in the PCICU and learned that everything went as planned.  He was able to put an adult-sized 23 mm valve into the newly reconstructed conduit, which is now pre-stented and will set Ethan up for future interventions in the cath lab rather than the operating room.  He was also able to place Ethan's new pacemaker behind the abdominal muscles -- praise the Lord! In other words: best case scenario all around.

Dr. J left and we all gathered in the conference room for a sweet time of prayer.  Within minutes, we were called back to see our boy.

Unfortunately, Ethan had declined quite a bit after settling into the PCICU.  By the time Jeramie and I got to him (literally 20 minutes from him leaving the O.R.), he had desatted significantly (low 60s) and had to be bagged in order to increase his oxygen levels.  He was so heavily sedated and evidently felt no need to breathe on his own.

Even with the bag ventilation, Ethan's oxygen saturations were only getting up into the mid-70s.  He was quickly placed on BiPAP, which greatly increased his saturations, but there remained lots of talk about reintubating him.  I made it clear that I didn't think that needed to happen, based on issues we were having with the BiPAP mask not fitting correctly, and the Lord sent us an advocate by way of a respiratory therapist.  He convinced the NP to give Ethan a few more minutes on BiPAP before drawing another blood gas, then make a decision about retintubating.  Within 10 minutes, between the first blood draw and the second, Ethan's carbon dioxide levels dropped from the eighties to the fifties (their goal for him at that point was forty)!

Managing his pain throughout the night was difficult. Too much morphine and Ethan refused to breathe; not enough and he thrashed around in his bed. Jeramie and I were so weary from such a long day, and seeing Ethan in so much pain was more than we could bear.  Around 9:00, I had stepped out to eat something and was called back into the room by my sister shortly after.  Ethan was still wearing the mask at that point and crying hysterically underneath it.  He wanted me something fierce, and when I could finally make out his words, "I want you to come closer.", I flung down the side of the bed and draped my body over his.  In that moment, the only words I could pray were, "Lord, please."  Despite my attempts to fight it, the sobs overtook my body, but my convulsing shoulders calmed him into a peaceful sleep.

Ethan stayed on BiPAP until around midnight, once he was mad enough to rip it off and could prove to us that he didn't need it anymore. From that point forward, his team found the sweet spot of pain management and Ethan steadily improved. Jeramie and I took turns sleeping, each logging three hours of "rest", and I woke up Thursday morning to a much happier boy, thanking God for the day's new mercies. be continued...

Tuesday, August 5, 2014


A mere four days after open-heart surgery, Ethan was discharged from Duke on Sunday afternoon, August 3rd. 'Surreal' doesn't even come close to explaining the feeling of coming home so soon, but it's a start.

We all knew it was time to go when Dr. J walked into Ethan's room on Sunday morning and, two seconds later, Ethan pointed his index finger at Jeramie and exclaimed, "Pull my finger, Daddy!" Dr. J had tears in his eyes from laughing so hard (or from the horrid smell that escaped my child's hind parts -- it's hard to tell), declared it a "top hospital experience", and later walked down to Thelo's room to share the laugh with them.  A few minutes later, in walked Dr. I who took one look at Ethan and asked, "So, are you ready to go home?"

We are in awe.  And exhausted.  And thankful.

Being home has been a bit crazier than I anticipated.  We were warned that Ethan would likely try to do too much, being in the comforts of his own home and all, and would tire easily.  They were right.  It has been a struggle convincing him to take it easy and relax.  I'm not sure what we would do without Netflix and an iPad!

Over the past couple of days, I've found myself getting anxious about his recovery.  I worry that he's doing too much too quickly; I worry that he's not getting better quickly enough.  I worry that he seems too tired; I worry that he's not getting enough rest.  It's hard to articulate, but I think I expected the surgery itself to be the hardest part.  Don't get me wrong; waiting and waiting and waiting for news from an operating room about your child's life is never easy, but I don't think I gave enough mental energy to the waiting involved in the recovery process.  I have to continually remind myself that Ethan had his chest cracked open less than a week ago and this wasn't all going to end when we walked out of the hospital.

All of this anxiety has been a constant reminder of my need to keep my eyes on Jesus.  It's a dance, this 'trusting in the Lord' thing.  When I look away for even a moment or two, I find myself tripping over worry and fear.  I am in continual need of the Lord's guidance and direction; without it, I'm a mess.  I happened to be reading in Isaiah yesterday morning and came to chapter 26, verses 3 and 4:

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you.  
Trust in the Lord forever, for the Lord God is an everlasting rock." 

The promise of peace for a mind focused on the Lord, on a God who will not crumble or crack, brought me so much comfort. How awesome that God's word is living and active and relevant to a nervous mama even today!

We had a follow-up with Ethan's pediatrician yesterday afternoon and we're keeping a close eye on a small area of swelling between his sternal and pacemaker incisions.  No one seems concerned just yet and Dr. J will examine it thoroughly on Friday when we're back at Duke for Ethan's post-op appointment.

Please continue to pray for us.  As I'm learning this week, this is not 'over' and we still have a ways to go until our boy is fully back to his spunky self.  Please pray that Ethan's recovery would continue to remain infection-free and that he would grow stronger with each passing day. We are in awe of what God has done in the life of our son and we give Him glory for it all!

Thank you for praying with us and loving us well.

"For you are great and do wondrous things; you alone are God."
-Psalm 86:10

Saturday, August 2, 2014

Post-op, Day 3

Thank you, thank you, thank you for offering up prayers on Ethan's behalf after last night's post! I also received some very encouraging messages that helped to ease the anxiety I was feeling about Ethan's oxygen saturations and shoulder pain. On top of all that, we had good, separate conversations with both Dr. I and Dr. J today and neither of them are concerned about either issue.  It seems I just needed to turn that over to the Lord and give Ethan some time.

Ethan was wheeled down to radiology first thing this morning for a chest x-ray.  It looked pretty good for three days post-op, but there is still a small area of 'wetness' that we'd like to see resolve.  Between chest PT, walking, and Lasix, we're confident that this will clear up fairly soon.  He'll have another x-ray tomorrow morning and we'll go from there.  However, even with the wetness, Ethan maintained oxygen saturations in the mid-to-high nineties all day! I watched those blue numbers on his monitor just about all day long, with wonder in my eyes and gratitude in my heart.

As far as the shoulder pain goes, he only complained about it once or twice.  He seemed pretty sore, in general, today so we're trying to stay on top of the pain before it really bothers him.  (By "stay on top of the pain", I mean regular Motrin every 4-6 hours. Children's Motrin! Three days after heart surgery! Kids are crazy strong.)  As God heals his body with each passing day, we're hopeful that these kinks will work themselves out and resolve completely.

Ethan has seemed the most like himself today and I am so thankful.  Believe it or not, we had to stop the kid from running (RUNNING!) during one of our walks today.  Waiting hours on end for your child to come out of open-heart surgery is stressful.  Keeping them from breaking into a jog three days after said surgery is a whole other kind of stress, but I'll take it!

I don't have any specific requests for Ethan tonight, but will you please pray for our heart buddy Thelo? His mom, Lori, and I met a few months ago at a meeting organized through Duke and we have become fast friends.  It just so happened (thanks, God) that we ended up at the hospital together with our boys, even sharing the same room in the PCICU for a night.  It has been such a sweet gift having her around, but of course this means that she's there for her own child, too.  Thelo has been struggling with his oxygen levels, and has spiked a fever over the past twenty-four hours.  His little body has endured a lot over the past week and the weariness is setting in.  Will you please pray for Thelo and Lori? Pray for endurance and peace, strength and patience.  Pray for wisdom for Thelo's medical team.  Pray comfort and for rest.

Thank you for your love, your encouragement, and your prayers.  We love y'all!

Friday, August 1, 2014


So, here's the deal: Ethan is a total rockstar.  This has been the one word, used multiple times, by multiple members of Ethan's medical team to describe him up to this point.  The resilience that boy has shown over the past forty-eight hours is mind-blowing.

Mama getting six hours of sleep in said forty-eight hours is something special, too, so (once again) this is going to be a quick one.  For those of you wanting all the details (I know you're out there!), they'll come eventually.  Right now, I just want everyone reading this to know one thing:

God is good.

Of course, it's easy for me to say that as I watch Ethan, two days after intense, complicated open-heart surgery climb in and out of his bed and walk laps around the nurses' station.  But the truth of His goodness was also what I clung to while I stroked Ethan's head during hallucinations and laid myself over his beat-up body as his oxygen dropped and he was too drugged to breathe.  Through the highest of highs and lowest of lows over these past two days, the Lord is the one thing that remained constant.  His goodness and faithfulness do not fail, and I am thanking Him for that tonight.

The surgery on Wednesday was a complete success. It took much longer than we anticipated, but Dr. J did some amazing work in our boy's body.  Ethan had an echo this afternoon, so we'll hear more tomorrow about how everything looks postoperatively.  If his activity level is any indication, everything is going to look just fine!

We do have two specific concerns that we'd love for you to pray with us about.  In a way that can only be ordained by a God who cares about the details, Ethan's cardiologist, Dr. I, is on service this weekend.  He knows Ethan better than anyone at Duke and I'm confident that, with the Lord's guidance, we'll work together to get some answers over the next day or so.

#1 -- Ethan's left shoulder.  Since yesterday afternoon, Ethan has been complaining about pain in his left shoulder area.  We thought this was directly related to the chest tube, but he experienced pain in the same spot this evening, hours after the chest tube had been pulled.  It very well could be residual pain from all the trauma of surgery and the tube, but I feel uneasy about it all. Would you pray that Ethan would have relief from this pain, and that we can come to wise conclusion about what could be causing it?

#2 -- Oxygen saturations.  Ethan is still requiring a bit of oxygen to keep his saturations in the normal range. So far, we've been able to keep them 'acceptable' with some oxygen blowing towards his face from a tube, but he did require a nasal cannula earlier this afternoon.  His saturations should be improving as he becomes more active and releases more and more fluid, but we're not seeing the jump like we thought we would.  He'll have a chest x-ray in the morning to check on his lungs and we'll go from there.  Please pray that Ethan will be able to tolerate increased activity tomorrow without the need for extra support.

We are overwhelmed by the love and support we've received this week! We have read every message and listened to every voicemail.  Even though we haven't been able to return all of your messages, I hope you know how much we are encouraged by them -- THANK YOU!

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