Update: Day 18 & 19

It feels like a lifetime since I last posted here in this space despite it really just being two days.  I’m not quite sure what all I want to say, but I know I feel anxious and sitting in this space putting my thoughts into words is always good for my heart and mind.

Friday night my sweet friend Jamie sent me a song her husband Aaron had written around 9pm.  As I listened I just weeped because it was absolutely my heart’s cry.  All my feelings wrapped up in a song and I seriously played it over and over throughout the night.  I stayed with Everett until around 3am.  I shared my earbuds with him and we listened to the song together over and over as I just begged God for a miracle in his little body…sweep through him Lord and give him life…heal his heart…restore his sweet mind…breath Your life back into his small beautiful body.  This song I felt was just for us and this time we are journeying through.  The entire song nails my heart.

Though I may suffer for a while, I have a hope that’s undefiled. I see the part, but not the whole. I know this world is not my home so I want to see Jesus lifted high. I want to see Jesus lifted high.

“Jesus Lifted High” -Aaron Ivey

When I woke up I had multiple messages from friends and strangers all sharing the same article with me and telling me they hoped I’d found my night’s song.

“Your way was through the sea,
   your path through the great waters;
   yet your footprints were unseen.
You led your people like a flock
   by the hand of Moses and Aaron. Psalm 77:19-20

Psalms of lament exist because of sin, but steadfast hope attends our cries because of Jesus: obedient, stricken, smitten, afflicted, crucified, dead, buried, risen, victorious, ascended, reigning, coming again — knowing that, one day, he will wipe away every last tear. 

Lament and confidence are never mutually exclusive in the Psalms, and they ought not to be in our lives. Lyrics of sorrow mingle with lyrics of joy; the people of God sing through tears and trials, on the mountaintop or in the valley.

God is faithful to give the sweetest of songs in the blackest of nights. He gives us the strength to sing them when all we can muster is moaning. He is teaching us to sing, taking us by the hand, leading his people all the way home. He is the God of those 3 a.m. moments. He is preparing his saints to sing an everlasting song of unrestrained joy, offering full-throated praise to the glory of the Lamb who was slain. 

As we wait for the day when darkness will be no more, he gives us a song in the night. 

He is our song in the night.”

I read the above portion out loud in bed and cried.  I felt so seen and so loved.  I had surely been given my night’s song to worship and praise our Father who is always deserving of such things.

Yesterday was full of more waiting and hard conversations as we got further and further out from the last time Everett had received sedation medication.  His team really needed to see him move and there we’re still no movements outside a slight mouth twitch when he was getting his teeth brushed.  His EEG machine remained unchanged as well and showed little activity.  The plan was to wait until Monday to do another CT scan.  We also talked with the kids about his current state and what all that might mean.  We made sure they understood we we’re not giving up on Everett and that we we’re all still praying and holding tightly to hope.  They we’re sad and okay.  The decision was made they needed to head on to Michigan the next day to see their little brother.

This morning as we we’re getting ready to head to Everett’s room we got a phone call from his nurse.  Some concerning things had changed and they we’re taking him down for another CT scan right away.  By the time we walked down the hall to his room they had already removed his EEG machine and we’re getting ready to go.  We shot off texts quickly asking for prayers and a miracle while Josh’s dad, sister Jen, our niece Campbell and 4 of our kiddos we’re already headed our way from Tennessee.

Neurology came pretty quickly to discuss their findings.  The CT scan confirmed Shuai had suffered severe brain damage and now had excessive swelling as well.  The little neurological signs we we’re hanging onto we’re no more and the neurosurgeons confirmed they could not help him.  He will stay on life support as his team begins a series of tests to confirm brain death.  After they left I read my devotion for the day and again God met me right where I was.  It talked about surrendering to God what you hold most precious.  In a time right now when all I want to do is hold Everett so tightly I was reminded again to lay him down at the Father’s feet…surrender him over to the One who is his Creator…to the One who loves him far more than I ever could.

 We had more hard conversations through out the day with doctors and everyone knew our kiddos would be arriving late in the afternoon.  Harper has been so concerned about three things: 1) Everett’s birthday which is on the 29th 2) His best friend who will be coming home soon and 3) That something bad would happen while she was here.  We decided we would have a birthday party for Everett while they we’re at the hospital and our team encouraged us to celebrate today rather than tomorrow for caution’s sake.  If something happened they did not want our family and children to miss out on this special memory.

With just a few hours before they would arrive Josh and I headed to Target and Kroger and I left the hospital for the first time in 19 days.  I cried and felt so anxious, but our nurse and respiratory therapist encouraged us to go and that Target was only 5 miles away.  They promised to call us if anything happened at all, so we headed out.  We got party supplies…minion plates and napkins, banner, pom pom & honeycomb buntings, a number 4 candle, fun sodas, birthday hats & party blowers, balloons and cupcakes.  I broke down into an unattractive sob in the Target aisle…I just could not believe we we’re doing this.

Before the kids arrived our nurse Denise let us pick a shirt and she cut it up the back and up one sleeve and slipped it onto his small body so Everett would resemble more his normal little self and cover up all his tubes and lines.  When I went to pick out what shirt for him I sat on the ground in our little room in front of my suitcase and sobbed some more into his sweet clothes.  We decided to put him in his “best” shirt that his best friend has the “buds” shirt to.  It seemed like the perfect choice since they have celebrated every one of their birthdays together.

Our kids and family arrived and honestly it was the sweetest time for us all together.  It felt so needed and holy.  We watched a movie and laughed and cried.  We ordered pizza…Shuai’s favorite…and sang happy birthday to him.  We ate treats and drank sodas and talked and I soaked in my people I’ve been missing so much since arriving here.  My niece Campbell leaned over and gave me a hug and said she loved and missed me.  I leaned in and gave her a kiss on her cheek and told her how glad we were she came.  And Amon took over birthday party photography at one point and said things like “say party people” while snapping away.

 Josh’s brother Andy called from China and I could barely get a word out to him through my tears…he loves Everett so well…and he even sang some happy birthday to him in Mandarin.  The kids we’re sad, but also happy to be back together.  They asked a few questions and they all had thoughts to share here and there.  It was just a moment we will surely never forget.  When they left Josh looked over at me and said, “Well that was good.”  And it really was.

They’ll come back tomorrow too and we’ve made a few other plans.  Right now we are just praying and begging God for a miracle.  Hope is not lost and will never be.  Jesus Himself gets the final say and we are choosing to believe in our Healer…our Miracle Maker.  He is wondrous and good.  Today was another special day to praise our Savior and celebrate His handy work in the creation of Everett Louie Shuai Kelley.  What a gift we have been given in our son.  We are surely the luckiest.  And Everett has made our lives so much richer and even more beautiful…he is a treasure.

Please continue to stand with us in hope.  Please continue to petition our Father to breath life into Everett’s little body and restore his mind.  We know He is able!

Day 17: We Refuse To Be Hopeless

The first thing I want to write is how genuinely thankful we are for the way you guys…people from all over…have joined us, taken hands with us and linked arms with us in prayer for our Everett…our Shuai boy.  It has been absolutely stunning and I just could never express how deep our gratitude runs.  The comments and messages and mail and texts and emails and gifts and support are overwhelming in the sweetest way.  Our son is loved…we are loved…and it has helped carried us.  I cry when I read your words and literally burst into tears when I read these words from one of you…”Hearts across the internet have taken Everett in.”  That one sentence encompasses how we feel…we feel you have taken Everett into your own heart and loved him and prayed for him and as I sit pouring tears over my keyboard we are indebted to each of you for your kindness, thoughtfulness and incredible love.  Thank you seems so small so please know how truly thankful we are.

Taking Everett down for his CT scan was quite the ordeal and when they rolled him away we felt the emptiness of his room.  Josh and I just hugged where his bed was then waited for him to be brought back.  It was quite the long day.  Radiology initially thought they only saw swelling..which was expected…and there was no bleeding.  Our doctor shared sometimes damage takes a few days to appear and that neurology would have more to say.  When he was sharing the news I felt in my heart, “Not today.”  I am immensely grateful for another day with Everett…more time to soak his little self up.

At one point during the day Everett’s nurse Denise saw the corner of his mouth twitch while brushing his teeth and he tried biting down slightly on the brush.  We also noticed his EEG machine had changed slightly.  Truthfully, although so small, this was so much hope for us.  I stood by his bed and felt deep hope.  One of our translators came by and I told her we didn’t need anything right now.  She walked out and Denise bolted out the door after her.  She brought her back and got her to tell Shuai to continue to fight and not to give up.  Then she so sweetly started crying and pouring words over our boy in his beloved mandarin language telling him we…his mama and baba…we’re there with him and loved him so much.  She told him God was with him and encouraged him to keep fighting.  We all just cried and watched as she spoke so beautifully over him.  Afterwards she told us what all she said and we hugged so tightly.  What a sweet gift from God in that time.  It was a moment I was privileged to watch and be apart of.

The neurology team came by his room around 2:40.  Josh had gone to take a shower so I started calling him.  The team proceeded to do an exam on Everett testing certain things on his little body.  They finished and I told them Josh said they could start without him.  She asked if I was sure and I told her it was fine.  In my head I thought they we’re just going to say the same thing radiology had.  One of the ladies looked me in the eyes and said, “It’s not good at all.”  And I was shocked.  I started looking around and Josh walked though the door to his room.  I was stunned and think I said something like “It’s not good.” to him.

The team had us sit down and proceeded to tell us Everett had moderately severe to severe brain damage.  His EEG, CT scan and his exam had confirmed these things.  I felt like they we’re giants all towering around us and I remember I started focussing in on the Mumford and Sons song playing over his room speakers instead of their words.  Our doctors and Denise and Matt all looked on behind the team.  I felt so bad for all of them.  I honestly can’t even tell you what all they said except things like “we’re not hopeful” and “not the same child”.  With his brain damage they feel they cannot fix his heart right now.  I sat absolutely stunned and in shock and only asked one question, “I don’t understand.  If his heart is so sick and he has such severe brain damage how will we get out of here?”  His sweet doctor said, “We are all asking ourselves the same thing.”

As of right now the plan is to just wait and watch and see if anything changes over the next few days.  We are absolutely devastated, but please hear me when I say, we refuse refuse refuse to be hopeless.  God is too good and Everett has fought too hard for us to throw in the towel now.  We owe it to Everett to hold onto hope…to beg God for a miracle…to rally all our people and storm heaven on sweet Everett’s behalf.  Oh God, be near and hear our cries.

He is in the business of miracles.  He can restore Everett’s body completely.  He can breath life into his little mind, body and heart and we are begging Him to do so.  We will choose hope.  We will choose love.  We will choose praise.  We will sing our broken hallelujah because God is so deserving of our praise.   God does not change based on our circumstances.  He is the same…steady and unwavering.  May we sing no other name than His.

I know we’ve asked for so many prayers, but please keep praying and hoping with us.

Update: Day 17 {please pray}

Everett still has not woken up or moved and his EEG machine is not showing much activity. His lactate is still high and is not coming down which signals the death of cells.  The two main things that are acceptable to this are his brain and gut.  Radiology is looking at images of his gut they took and they are taking Everett down for a CT Scan at 10.  It’s 9:45 here and they are taking him down soon. Please please pray for a miracle in his sweet little body.

Update: Day 15 & 16

I want to make sure I document here because this blog is like my memory so I will definitely go into more details below, but as not to blindside you sweet people who even stop by to read and pray over our family, sweet Everett went into cardiac arrest again this morning and after lots of compressions and still no pulse, he is currently on full life support.  I know.  It’s a lot and we are obviously indescribably sad. I will share more below.

They ended up getting him extubated around 1:30 Tuesday afternoon and he did well and had a good night too.  During that afternoon his nurse insisted I get to hold him even though it was quite the ordeal.  I am so glad she was determined to let me hold him.  I can’t say that enough.  It was the sweetest time.  He was a little restless at first, but then settled in.  I cried literally on top of him, breathed him in deep and whispered in his ear the truths that he is brave, strong and loved.  He fell asleep and rested and we took a little nap together in the recliner chair.  What a precious gift it was to hold my boy and feel the weight of his body on mine.

He remained extubated all yesterday as well.  They also moved him to a private room in the ICU so he could get better rest.  He was previously in an open area…not a private room…with lots of little babies where he was the oldest.  They even got started on some physical therapy with him and were working really hard on his breathing and clearing out his lungs.  Clearly it was exhausting as he fell asleep while working on sitting up in his support foam chair.  Gah.  He’s the cutest.  And I even got to hear him say “mama” twice and he asked for water once.

Last night I ended up staying in his room until around 2.  He finally settled enough where I felt okay to go grab some sleep.  When I got to his room around 8 he was struggling with breathing and his team had decided to intubate him again.  His heart went into arrhythmia again and threw a super high heart rate and when they were intubating him he went into cardiac arrest again.  His room filled and I lost count on 16 people in his room.  I watched them do compressions and stopped looking at the clock after 20 minutes. One of his surgeons said he thinks it was around 40 minutes.  They still could not get his pulse so they worked quickly to get his little body on an ECMO machine which is full life support.

I called Josh on the phone when it all started to happen.  He’s been back in Nashville taking care of the kids and working, but his dad booked him a flight asap and he hopped a plane and was here in Michigan by noon Tennessee time.  I could have sobbed a river thinking about him being so far away for this and then that plane ride, but he’s here and got to see his boy.  There are still lots of unknowns and questions and his team is working very hard to figure things out.  Right now they are assessing any damage that might have happened to his brain and internal organs during his arrest.  His brain activity is being monitored on the EEG machine and they have taken him off all sedation medications in hopes he will wake up to show them some movement and then they will immediately heavily sedate him again.

We did talk to our surgeon today and if Everett can get back to baseline on life support they will take him back into the operating room on Monday on ECMO and try and replace his AV valve.  This was not the plan they wanted to do, but Everett’s pretty much pushed their hand.  There are lots of things they are worried about, but this is the best plan for now.  They feel his severely leaking valve is only part of the problem, but a big contributing factor to why he is having such a hard time breathing and recovering.

We’ve had the best staff.  So many people came up to me when everything was going on and I was watching in the hallway outside Everett’s room and said, “You’ve got the best of the best in there working on your son.”  I found both of the nurses who did compressions on Everett and thanked them.  One smaller framed woman who literally got on his bed to do the best job she could to help save his life gave me the biggest hug.  Definitely buying them all cookies tomorrow.  He had two out of his three surgeons who have been in all his surgeries…they opened him up right there in his little room and got him on life support.  We had the sweetest nurse, Denise, all day today.  We’ve had her previously too and I just love her.  She talks to Everett the whole day…telling him every little thing she’s doing to him…telling him how hard he’s working and how special he is.  I tear up constantly because she knows how special our boy is and she treats him with such care.  I even requested to have her back and we get her for the next 5 days she’s working.  And tonight we’ve got back Matt, one of our favorite night nurses that has been with Everett 5 or 6 times now…including last night.

In the midst of Everett’s chaos this morning…watching compressions and watching his team work to get him on life support…I told God over and over again, “I will give you glory.  I will praise your name in this.  I will give you glory.  I will praise your name in this.”  The whole situation is no where a parent wants to be.  We are incredibly heartbroken and sad.  Everett is absolutely pitiful looking…chest open and tubes everywhere.  This was not in our plans for our beautiful, vibrant, life-loving son, but God is still good.  This does not change who He is and I will say that over and over and over again because I need to remember it every day.

My devotion today was perfection because that’s what God does.

“We must be willing to live by faith, not hoping or desiring to live any other way.  We must be willing to have every light around us extinguished, to have every star in the heavens blotted out, and to live with nothing encircling us but darkness and danger.  Yes, we must be willing to do all this, if God will only leave within our soul an inner radiance from the pure, bright light that faith kindled. -Thomas C Upham

We surely feel like so many lights have been extinguished and that the stars have been blotted out.  We surely feel the darkness so heavy as we watch a machine make our son’s heart beat and fill his lungs with air.  Oh do we feel it, but we serve a God who always provides hope…who always leaves that pure, bright light that faith in Him will ignite…set a blaze.  Please continue to pray and hope with us.  Please continue to have wild wondrous faith in a God who can do miraculous things right before our eyes.

Update: Day 14 + Extras

Wanted to get a jump on an update today and Everett is pretty chill right now so no time like the present.

Everett had another pretty uneventful night.  They made his sprints much tougher last night and he did okay.  Not the best, but not the worst.  This morning he’s not sprinting, but they made his regular breathing tougher and continue to make it tougher as the day moves on.  So far, so good.  If he does okay they’ll try extubation this afternoon.  Also he got a random bad liver result so GI is going to do an ultrasound soon to check on that.  I laughed when the doctor pointed to his own liver and kindly reminded him Everett’s liver and spleen are reversed.  He chuckled too.  Heterotaxy probs 🙂  He’s also retaining more fluid than he’s putting out again so he needs to get the fluid off.  So for today that’s our game plan and I’ll try and check back in maybe tonight for an update.  If you’d like a quicker update you can check out my Facebook or Instagram page.  Those are just easier and quicker to update.

In other news:

So many of you have so kindly been asking how our other kiddos are handling everything.  An easy, short answer: pretty good.  Everyone is missing everyone big time, but Josh is planning on driving up with everyone this weekend.  I simply cannot wait and think this will be crazy good for all of us.  Let me also take a moment and do an annoying brag on Josh Kelley.  You guys, he by far has the harder job right now.  He misses his Everett boy something awful, is far away from the instant updates, is working, is loving on the kiddos and gauging all their emotional needs right now and getting everyone where they need to be, fed, cared for and moderately groomed & bathed. 🙂  He’s doing it all and kicking ass, which if you know Josh Kelley, you know this is not surprising because this is just what he does.  He’s their dad and he knows what an all encompassing and important job that is.  End brag.

We have had the sweetest help with the kids too while we we’re both in Michigan together and while Josh goes to work now.  I have not for one minute worried about them and I know Josh feels the same.  We know and are loved by some seriously special, kind and loving people.  I hope they all know how thankful we are.  It really is so amazing.

Amon started another tee ball season.  It was the sweetest because I got pictures from several friends and family since I couldn’t be there.  It meant the world to me to hear updates and see Amon.  He was definitely living the dream and has asked us no less than 117 times when his first game would be this season.  The boy loves to play the game.

Harper left for her first church camp on Sunday.  I was a little bummed to miss out on helping her pack, getting her things together, her costumes for their themed days and seeing her off.  Jen and Susan stepped in to help with all her themed days and Josh got all her supplies.  I cry when I think about it because I’m just thankful for people who just do what they do…like helping your 10-year-old line up themed outfits.  She is loved…we are loved.

Lots of you have asked about sending mail for Everett.  You are more than welcome to send him some if you would like.  I’ve sent this already to lots of you, but here it is for further requests.

I have felt all the love since arriving in Michigan.  Aimee has made sure of this.  She and her sweet, kind friends have gone above and beyond.  They have brought conversation and laughter, food, sent gift cards and sweet things like books & treats.  They’ve prepared homemade meals, smoothie bags and scripture cards.  They’re small group made a blanket (which I keep using…hahahaha) and prayed over it for Everett.  They met in the lobby and prayed when we got the news about his valve leaking worse than before.  Aimee picked Ashley up from the airport and took her back when she left.  They even brought me a blender to make smoothies.  None of which I asked for and none of which I deserve and yet, they just keep doing…they just keep loving.  I actually teared up over my homemade taco salad last night.  It felt like home and I felt loved and seen.  While I am not the best at accepting help…Josh neither…this whole experience is teaching us how to receive and say thank you and I feel very humbled and honored by the who thing and each of you.

 And lastly, let’s talk Ann Arbor and Mott food.  I actually just figured out that the big cafeteria is open 24 hours.  WHAT!?!?!?!  Why did it take me 12 days to figure this out, I have no idea.  I usually just like going to the small cafeteria closer to us because they still have good food and personal pizzas.  BUT and this is a big BUT, the big cafeteria has frozen yogurt.  I love ice-cream and frozen yogurt is totally doing the trick while we’re here.  I actually get a punch on my M-Health card for the frozen yogurt and after I fill up my healthy card I get…wait for it…a bottled water…and $2 off my next purchase.  Hahahaha.  Now there are no oreo toppings or anything, but I can get almonds, crushed peanuts and dark chocolate chips.  It works.

The staff here at Mott and Aimee have shared lots of good food places with me.  If you’re ever in the Ann Arbor area here are some of our favorites so far:  Zingerman’s Deli, Wings Over Ann Arbor, Palm Palace and Tios.  Insomnia Cookies and Evergreen Restaurant of course, but I told you guys about them already.  If you’re from the area or have been in the Ann Arbor area and have some good food places, please share.  I’d love to hear about them and give them a try.

Sidenote:  Tios had THE.BEST queso.  Josh had actually just gotten back from picking up food from there the night Everett went into cardiac arrest.  When we finally ate some 2-3 hours later, our tacos fell apart and I was worried PTSD would surely have ruined queso for us for life.  Thankfully, we reheated the queso and found out all was still right in the world and our love for queso and all Mexican inspired food was still burning bright.  End sidenote.

Okay, that’s it for right now.  Everett is still rocking on through his day.  He’s working really hard on his breathing and we’re crossing all our fingers and toes we can get this kid vent free this afternoon.  Thank you always for the prayers.

Update: Day 12 & 13

Yesterday was just a day of rest for Everett.  With the news of his atrioventricular valve now leaking worse than before surgery everything was put on hold.  His team still worked on weening meds he was put back on with his most recent scare and he still did sprints to work his lungs.  I felt like he really needed the rest.

His night was very uneventful as well.  I slept some more.  It’s been nice getting more than 2-4 hours of sleep at a time.  I feel like my body definitely needed it.

Today we kicked off the morning with an echo.  His team wanted to make sure they we’re really seeing what they thought they we’re on his previous echo.  I sent out a few quick texts and we prayed.  We prayed and prayed that the echo would be wrong.  That when they reviewed the results only God would be the explanation.  All morning long and during the day I told God, “You can do this.  You can change the results even right now.  You can heal his little valve and make it strong.  I believe and when I don’t help my unbelief.”

They sent him down to the cath lab around 10:30 for his PICC line.  It never gets easy no matter how small or minor the procedure is suppose to be…I always tear up.  Every.Single.Time.  I waited out in the waiting room and read my devotion from yesterday and I felt seen.

“Then let afflictions come, for God has chosen me. Poverty, you may walk through my door, but my God is already in my house, and He has chosen me. Sickness, you may intrude into my life, but I have a cure standing ready – God has chosen me. Whatever occurs in the valley of tears, I know He has chosen me.”    -Charles Spurgeon

I waited for what felt like forever.  Ashley actually went home early yesterday morning so we text each other photos of our lunch. 🙂  Finally got to get back to him and he did great.  I kept asking every nurse or fellow or doctor who came by if they had heard about his echo results yet, but still no word.

Finally I got to talk to one of the doctors.  I will say I like when doctors and nurses are blunt.  It may sting a little bit, but I would rather not sit and wonder.  I just want the truth.  I told this doctor that right up front.  Everett’s echo from this morning revealed that his AV valve is in fact leaking severely again like they saw yesterday.  Dr Bove and his team have all weighed in and at this point they all feel the next best step is to try and get Everett healed more before another surgery.  His little body has just been through so much.  They plan to extubate him tomorrow morning and then start working on weening his ICU meds.  They are concerned he won’t be able to ween off his ICU meds and if they cannot get him extubated and weened then he’ll likely have another heart surgery very soon.  If they can get him healed and weened off meds then they’ll send him home and start working on a plan for his next surgery.

I’ve had lots and lots of responses from friends and family about his current plan.  I’ve been asked how I feel about it and truthfully I don’t even know really what to think about it as a whole.  I know I hate that his AV valve is now leaking more than before his repair.  I know I miss Everett desperately.  I cry and cry over the light missing in his eyes and the quietness of his room and that I cannot hold him or hug him or kiss all over his little face.  I know our chance to see Everett for who he is again is in letting him heal.  And then I also hate thinking about getting him back and then doing this all over again.  I keep asking God to give his team wisdom and discernment.  I keep asking God to just be Himself.

I have cried a lot over the past few days.  I’ve also said the F word a lot over the past few days.  I go from okay to deep grief and sadness to anger and then all over again.  I question our every parenting move we’ve made for Everett.  I sit and just wonder what in the world is God up to.  I also have a deep reverence for the fact that God is God and I am not.  I do believe He owes me NO explanation and I don’t necessarily think He’s sitting up in heaven orchestrating this chaos for Everett and his little body, but I do know our past 13 days does not surprise Him.  Sometimes crap things just happen because we live in a very fallen world.

I read another devotional today and actually on the wrong day by accident, but I was immediately struck by one of the verses.

“…and when they lifted up their eyes, they saw no one but Jesus.” Matthew 17:8

So that’s where I am right now.  When I lift my eyes up from the okayness or the sadness or the grief or the pissed off-ness, I know I still see Jesus.  I might not understand it and I might not like it, but I know He is still here in it with us.  It is crushing to see our son so sick and so sad and I know He is heartbroken with us.  I know He loves Everett far more than I ever could.  I know He loves me.  And I know in this fallen world He alone is good.  I am holding tight to these truths and trying to remember to lift up my eyes.

Thank you for the continued prayers.  It has been absolutely astounding to see and feel how God has used you to shower us with love, encouragement, support and prayers.  We are forever grateful.

Update: Day 10 & 11 {pray with us}

A lot has happened for sweet Everett since my last post.  This tends to be his little trend…like a rollercoaster…up and down…smooth sailing and terrifying drops…breath taking and vomit enducing…Everett likes to keep everyone on their toes.

So Thursday late night/wee hours Friday morning Everett ended up having a really rough time.  He battled oxygen saturation dropping continuously and heart rate shooting up until about 2am. He still did two additional sprints and did okay with those.  If I haven’t already explained sprints they are an extended period of time of him breathing mostly on his own.  An x-ray showed more fluid in his lungs so they decided to try and dry him out more and not to move forward with extubation.  Some of his bloodwork did not look great so it was another fine balance of getting everything just right. They pressed on by working on his sedation again too because he was awake way more than he should have been…it was pitiful and hard to watch. He did get an ointment for his wound areas which has already started to kick in.  I can’t even imagine how his little body feels at this point.

Yesterday during the day I was so exhausted from staying up all night with him while he was struggling, after lunch Ashley stayed with Shuai and I went and took an over 4 hours nap.  When I returned to his room he’d kicked some ass all afternoon…sprinting like a champ and better blood work…so they decided to try and extubate him around 8 o’clock that night.  I was really nervous about this extubation  because the last time around had not gone well.

There we’re some new littles to join our floor and Everett was slower to wake up so they ended up starting his extubation around 9.  Finally they got the tube out and got him settled on the CPAP machine.  Ashley and I went back to our room around 1130 to try and get some sleep.

Around 2am his nurse called my room and said he was struggling a lot.  I got up and headed for his room.  His heart rate was crazy fast and his heart rhythm was so wild it had everyone perplexed.  They tried all their tricks.  They could only get him pacing with the pacemaker at 180…any lower his body would override the pacemaker and go well into the 200s.  They tried all their tricks and finally after some scary oxygen sats from his blood work they decided they needed to intubate him again.

After they got him intubated again his numbers were still wonky, but finally got him settled out and his chest x-ray looked fine.  His pacemaker was finally pacing him a little lower as well.  They called for an echo (like an ultrasound on your heart) and every time the echo wand would touch his chest his blood pressure would plummet.  It was the craziest thing.  He ended up having to have multiple epi spritzers and he continued to battle and fight all early morning long.  He is such a strong and brave boy.  I do not see how his little body has handled so much and fought the way it has.  Around 5:30am they finally got him stable and his numbers settled out.  His team was baffled by what exactly had taken place.  They ordered another more extensive echo to be done today and a team of rhythm specialists continued to look at his rhythm trying to figure it out.

He has been stable all day and they have been letting him rest and not work too hard today.  He’s done two more sprints today and his blood work had looked good.  His more extensive echo did reveal that his AV valve, that was repaired during his first surgery on the 28th, is actually now leaking worse than it was prior to his repair.  They do not understand why, but said he will not be a candidate for the Fontan procedure he needs with his AV valve leaking so severely as it is now.  This also might be the reason he is having such a hard recovery and such a hard time getting off the vent.  Dr. Bove along with Everett’s team of surgeons, cardiologists and specialists are meeting to discuss what all this will mean for Everett.

This is obviously not where we imagined we’d be.  I’ve cried a lot over the past two days.  I’ve continued to whisper in Everett’s ear how strong and brave he is…how special he is…and how proud of him we are. I’ve also told him how much I love him and that I miss him so much.  We miss our boy.  We miss his voice and his little personality and his chatty self and his hugs and kisses and cuddles.  It makes me want to say all the cuss words.  I desperately just want to hold him in my arms and take him home.

I’ve told God I will praise His name because He is always deserving of praise.  I’ve begged Him to heal Everett’s body.  I’ve told Him thank you for the gift Everett is.  I’ve also asked Him what is He doing…what is He up to.  I don’t understand any of this, but He doesn’t owe me one explanation of why…He’s the God of the universe…He’s my Creator…Everett’s Creator…and He loves us both far more than we could ever understand or imagine.  I simply have to trust Him and surrender our son over to Him every hour of the day.

Please continue to pray with us for Everett’s little body, for him to be comfortable and that he continues to fight like hell.  Please pray for Dr. Bove and Everett’s team…for wisdom, discernment and guidance.  And please pray God would heal his beautiful little body.  And if He heals Everett may we praise His name and if it all falls apart right in front of us, may we still praise His name.

Update: Day 9

Super late…as in we’re technically already on Day 10 according to Michigan time.  It was such a busy day with Everett’s team really pushing him to work hard today and I just never got around to getting a post up.  His main goals for today we’re to ween more meds and really work on doing some breathing on his own.  They want to get him extubated soon.

He did two “sprints” where he breathed mostly on his own for about an hour each time.  He will do another one around 3am and then tomorrow morning the goal is to try and extubatne him, but this will also depend on how his little body handles everything.  Overall we had another uneventful day and we are just crazy proud of him.  Makes me weepy thinking about how strong and brave this boy is.  I tell him all day long these truths.  One of the reasons we chose the name Everett is because it means brave and strong.  He encompass those words.

He also got a new chest wrap to help cover all his wires and his incision.  I told him I loved his new floral tube top and then I chuckled.

In other news, 3 things:

1. I finally left the hospital today.  That may sound really small, but after watching Everett go into cardiac arrest and his team jump into action, I just couldn’t do it.  I could not physically bring myself to leave the building.

Today Ashley really encouraged me to get out and finally I did.  There’s a beautiful little park area with trails just across the street from the hospital so I went for a run.  I walked some too and I could snag photos of all the beautiful flowers.  It was perfection and I listened to the new Hillsong United album Wonder…big time thumbs up!!!!

While running I played the moment when Everett coded through my mind and thought about all the details.  I don’t really like doing that, but my mind finds itself there a lot.  I remember only saying out  loud “please God, please God, please God” over and over and over again, but in my head I remember saying “I need him.  God I need him.”  And in that moment I felt the Holy Spirit say, “No, you need Me.”

Everything in me wants Everett to be here for a long long time and I want to watch him grow and flourish.  As I struggled and still struggle to physically leave his side I have to remember he is God’s and what we both need is simply Jesus.  I’ve got to trust Him with Everett.  I’ve got to take Him at his words and promises.  One thing I keep telling myself repeatedly is that God does not change based on the outcome of Everett’s surgeries.  His goodness and love and grace and mercy will not change based on the health or lack of health of any of my children.  He is good no matter what.  He is faithful no matter what.  And if the whole thing falls apart right in front of our eyes, He is still all those things.

2.  I ate my very first reuben sandwich today.  All the staff here at Mott are amazing and several of them have been giving us food recommendations.  Today we tried Zingerman’s Deli and whoa, just whoa.  It was absolutely delicious and I will totally be eating another reuben sooner rather than later.

And 3.  Ashley and I ventured into a gift shop on our way to the cafeteria for lunch today.  It was like a small time warp.  The hospital is already a giant time warp in and of itself…you go in and emerge days, weeks or months later like “What just happened and what day is it?!?!” but throw in their gift shops and it’s a time warp within a time warp.  30 minutes and $32 later and this is what I had to show for it…not pictured some meds and new tweezers 🙂

Thank you guys again and again for the prayers.  They just mean the world to us and we feel all the love, support and encouragement.