Archives for July 2017

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.

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.

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.

Hi!  Just checking in for the day.  Last night Everett had another uneventful night followed up by a pretty uneventful day.  He’s becoming quite the show off.  His main goals for today we’re to continue peeing and to ween off some of his O2.  Once they started implementing his new plan he immediately fought back some on the oxygen so they had to split the difference and go up a little, but not all the way where he was originally.  Over the course of the day they gradually have been moving him down little by little.

We are suppose to get a visit from the wound care team soon.  Shuai has a pretty nasty wound in-between his neck and chest.  He also has a peculiar line stretching across the back of his neck shoulder to shoulder.  Dude has just been put through the ringer.

All day we’ve seen more small movements from his feet, legs, hands, fingers, lips and fluttering little eyelids.  I even got to see his sweet eyeballs a few times briefly.  Cue all the tears again.  He started to wake up a little too much this evening which actually made them think he might be having some seizure activity based on all his movement and spiking blood pressure, but they upped his morphine and sedative just a bit and he chilled out.  It’s crazy how we can be chugging along and out of no where something shifts so quickly, but thankful for another pretty chill day.

In some random hospital news:

I brought my Streams In The Dessert devotional…vintage and yet, an oldie but a goodie…with me.  I’ve been trying to read it everyday.  This morning it was about how the desert (hard times & places) sure is a strange place to find vineyards (hope, growth, goodness) but that’s exactly what God does. The last sentence said, “God leads me into hard and difficult places, and it is there I realize I am where eternal streams abide.”   This!!!  This x 1000!

My friend Sherry sent me an awesome blog post by Sarah Bessey today too.  Oh goodness, is it good.  You can read it HERE.

“And then the greatest act of faith I have in my arsenal is my stubbornness.

Keep not quitting. 

Keep putting one foot in front of the other. Keep showing up. Keep praying, keep standing, keep working.

Even if there are days like today, days when you feel like the only success was that you didn’t quit, then you are still there – I call that a victory of its own.”

Ashley and I have been eating all the foods.  Basically our day surrounds what we will have for lunch and dinner.  The nurses even let us flip through their giant book of menus which all deliver to the hospital.  It’s kind of big deal 🙂  Ashley also busted out these weird pretzels she bought at the airport.  She thought they we’re chocolate covered pretzels, but turns out they are a bag of BURNT PRETZELS!!!  Did you know this was a thing???  We did not.  I was so incredibly intrigued by this and I actually really like them.  What in the world?  I’m telling you, I am a marketers dream.  Clearly this company just thought, “How can we make money on all these pretzels we accidentally burn?”  And someone said, “I know let’s appealingly package them by calling them “Unique” instead of “Mistake“, use other catchy wording like  “Nicely Burnt” “Bursting with tantalizing flavor” and “Deep Grooves“.  Then we’ll act like we did it on purpose and get total suckers to buy them.”  Then Ashley was all, “Hey.  I’ll buy that.”  The end.

Everett’s rainbow donkey piñata has been quite the hit.  All of the nurses, doctors and staff love it and almost always comment on it.  And the nurses always tuck Fiesta 😉 in somewhere.  At first I just thought they liked Fiesta too, but then one of the nurses told me he was the perfect shape to utilize since he’s L shaped.  Sooooo what she was saying is Fiesta is not only quirky and cute, but also useful.

And I have been cracking up because I posted the below picture on Instagram and so many have commented on how much better Everett’s color is and honestly it never dawned on me how bright it was in his room, but instead I was loving how laid back he was.  I even captioned the picture, “Laid back…with my mine on my donkey piñata and my donkey piñata on my mind.”  Hahahaha.  I didn’t mean to be misleading, but sweet boy is still rocking his wave pool tan and his lips are still on the purple side.  See above pics for more accurate coloring. ^^

Today was another good and encouraging day.  Our strong, brave boy worked so hard.  In fact, he worked so hard that tonight they are letting him just rest.  His two goals for the night are 1. Still pee and 2. Rest.  I have a good feeling he’s going to rock both of these.

Thank you for all the continued prayers.

Today was such a good day.  Everett had another really uneventful night last night and I got some sleep again.  Then right before I got to his room this morning he had another scare.  They gave him an epi spritzer and his numbers spiked really high and then leveled back out.  Since then though, he’s been pretty darn cool about the whole day.

When I got to his room there was the sweetest 4th of July craft his night nurse had done with him.  I saw it sitting on the chair for me and cried like a baby.  I told her thank you over and over again and cried and she said, “It’s for his first 4th of July.”  Cue all the tears.  So many tears.  I couldn’t stop.  One of the other night nurses also washed and fixed his hair.  This place is so special.  This place has all our hearts!!!!

This morning his big goals we’re to 1. Pee and 2. Move.  His kidney function was still not looking great and his output wasn’t what they we’re wanting so today was his day to kick it in gear and right now he is in the negative which is great!!!!  The dude has finally started peeing today.  They also really wanted to see some movement.  He’s been off his paralysis and they’ve been coming down off his morphine as well.  Everyone was keeping their eyes peeled and just about an hour ago his nurse thought she saw a twitch.  We jumped up and started watching and talking to him and holding his hand and rubbing his legs and then sure enough more little twitches.  He moved his toes and fingers and more little twitches.  He even gave my hand a little squeeze when I asked him to.  We we’re just so relieved to see those little movements.  I even caught some on my Instagram stories.

Some fun other little developments…my best friend Ashley flew in today!!!!!  She’s the best and I was so glad to see her face and hug her neck.  Aimee was crazy nice to pick her up from the airport and they snagged lunch for us on the way and we all sat around chatting and laughing and eating and watching to see if Ashley was going to pass out because medical stuff can do that to her 🙂  So far, she has passed out zero.  Everyone give Ashley a round of applause.

We also got the sweetest package in the mail today.  It had so many thoughtful items, treats and goodies for me and Everett.  My favorite part though we’re two handmade pillowcases just for Everett.  Thank you so much Emily.  You made our day even brighter.

And this evening right after the super exciting Everett movement I got a call from the front desk that there was a delivery for us.  I went down and a young man handed me a giant Mrs. Fields box.  I took it back upstairs and opened the biggest chocolate chip cookie cake just for Everepp.  🙂  Clearly the person taking the order miss heard those two T’s at the end and laughter ensued.  It was the best!!!!  When I asked the young man who it was from he said, “I think, maybe, Leanne???”  So Leanne, maybe, whoever you are and wherever you are, thank you so much.  You made our day too and helped us celebrate such an encouraging day with joy and laughter.

As always, thank you for praying for our boy.  We are feeling all the feels today and thanking God for such sweet steps forward.

So I kind of feel like I’ve been bringing the heavy lately.  I actually miss posting on all the randomness in our lives so I did a little thinking about our time here at Mott Children’s Hospital so far and honestly, other than with Josh Kelley and all our people, there’s not another place I would want Everett to be.  Dr. Bove saw something in Everett that made him say, “Yes.”  He gave us hope.  And while it hasn’t been easy I have never once thought we should have gone somewhere else.  This place and these people, well, they are indeed legit.  They are kind and caring and they are taking such good care of our sick little guy.

A little evening update on Everett and then onto some other things:

Today has been his first pretty chill day.  After his drama from this morning died down, he just cooled it.  His cooling blanket is off and has been since earlier today.  He just now got his EEG monitor off and there was still no seizure activity detected.  He was taken off his paralysis meds and we’re all just waiting for him to start moving a little here and there.  I feel like today he took a few steps forward.  Not giant steps or anything, but every single tiny movement forward is something to celebrate and praise Jesus for.  So much to be thankful for.

Everett still has lots of obstacles ahead.  His kidney function is still not the best…they will re-test this in the morning, but he has peed some today.  His heart rhythm still goes all wonky out of no where along with his other stats and oxygen and he’s apparently super temperamental.  Anytime something changes or he’s moved or they lower or raise a dose or add a new medicine he shows off and brings everyone to their toes.  Gah, I love him.

I keep telling him how big and strong and brave he is.  I keep telling him how special and prayed over he is.  I keep telling him how much we love him.  I keep thinking about his incredibly special little heart and anatomy.  I keep remembering how God created him just so and in His very own image.  Everett’s special heart and body we’re no accident or mistake…oh the contrary.  They are God’s handiwork.  I really and truly believe that and I would do this whole thing all over again a thousand more times so I could be with and know and love Everett.  I am the luckiest mama on the planet.

Okay, onto some randomness from my hospital living.  Let’s begin 🙂

When I shared we would be coming here to Ann Arbor my new friend Aimee reached out and we exchanged numbers and she was officially our one and only visitor and I really like her.  She has come to the hospital THREE TIMES already.  First day she brought sandwiches and chips.  Ummm, was she trying to win my heart over with food…I think so.  How did she know?!?!?!  Second visit she brought cupcakes.  WHAT!?!?!  Aimee, are you trying to woo me?!?!?  Third visit she brought the yummiest, maybe Mediterranean, chicken & pickle wraps, potato wedges, smoothies and lemon cake.  Aimee, you are officially our favorite visitor…and our only visitor.  Hahahahaha.  Aimee is funny and makes me laugh.  She gets our weird sense of humors and the last time she was here was when Everett came really close to another crash.  Confident she left with PTSD 🙂  I told Josh after she left the last time, “I really like her.  She’s so normal.”  He said, “She’s not normal.  She’s like you.”  I laughed so hard.  Anyway, Aimee thanks for loving on us with your food choices and conversation and laughter!!!

(And why yes I did taste test each cupcake…minus the carrot cake because, well, vegetables do not belong in desserts…same goes for raisins…before I fully committed to one of them.)

Speaking of visitors, my cousins Mike and Heather live in Michigan about 2ish hours away from Ann Arbor.  My cousins Brian and Rebecca just so happen to be coming to Michigan today to visit Mike and Heather so today I officially had our 2nd, 3rd and 4th visitors…Rebecca, Heather and Olivia.  They brought me lunch and Target treats and a gift card and some goodies for Everett and they just stayed and chatted.  They even got some medical lessons from our awesome nurse Denise today.  It was really great and I cried almost zero times while they we’re here. 🙂

I was looking though photos today on my phone and came across these two.  OH MY HEART.  This was as we we’re leaving to head to the airport for our flight to Michigan.  Shuai went around and hugged everyone.  These two just slay me.  Harper is absolutely smitten with him and cannot wait for us to get home.  She’s been feeling all the feels.  We just can’t get home soon enough.

Snail mail is still important to me even in the hospital.  One thing I learned from Mom’s death was even when you aren’t sure what to do for yourself you can still always do for others.  While Everett’s current condition is not the best, things could still be worse and my boy’s heart is still beating and I know plenty of other’s fighting their own battles.  I want to make sure I continue to care for others in this crazy little time.  I’m trying to remember to turn outward instead of inward.

You may remember our surgeon’s bloody shoes and socks.  Well Josh Kelley later further explained they we’re also clogs with a heel.  You guys, my mind ran wild.  And so much laughter ensued trying to imagine these heeled clog blood caked shoes.  It makes me laugh just typing that.   I even googled “medical heeled clogs”.  Well I finally snapped a picture of his shoes, enjoy.

So many people are sending us messages and texts and emails and comments and it’s the craziest, sweetest thing ever.  My cousin Rebecca recently sent me this text one of her friends sent to her.  I laughed out loud so hard and I totally love that a rainbow donkey piñata made her think of Everett.  THE BEST!!!  Josh and I already decided for his birthday we’re having a rainbow donkey piñata fiesta party.  It.Will.Happen.

And last thing for tonight.  So when we watched this group of people we don’t even really know spring into action, administer compressions and bring our son’s pulse back, well, we really wanted to say thank you with more than just words.  I tried thinking about what I could do and finally decided to do a little prying and found out one of the staff’s favorite treats is an awesome cookie place called Insomnia Cookies.  Here’s the best part…they deliver…hot cookies…that taste amazing…even until 3am.  WHAT?!?!?!  Seriously.  So cookies ended up being our small little way to say thank you.  And if you haven’t checked out Insomnia Cookies, they are worth the look up.

Well that felt good to write about other things outside of Everett’s medical stuff.  I’ll have to try that again. And will continue to try and keep everyone updated on his progress.

Again and again, thank you for praying for him and for us.  Thank you for cheering him on along with us.  Thank you for encouraging us in so many different ways.  We feel all the love and it’s just what our hearts needed.

A quick update this morning.  Here is what I shared on Facebook and Instagram earlier this morning:

“We had another scary moment yesterday evening when Everett was really struggling again. His heart rhythm went all wonky and his numbers continued to fall too low. His team kept gathering up, his nurse would give him an epi spritzer and then his numbers would rise. They did this 3 times and finally got him paced with the pacemaker and discovered one of his medicine lines had become undone in the bustle. Everett had a pretty uneventful night outside of that which was great. Josh Kelley and I did get some sleep and then Josh got on a plane early this morning headed for Nashville. I know 5 Kelley kids who are going to flip to see his face. This morning he’s been struggling a little more. He’s having heart rhythm issues and numbers dropping or shooting up too high. They think he was waking up while on the paralysis meds and did rule out seizure activity thanks to his EEG machine he’s still being monitored on. They gave him a quick working sedative and his numbers have dropped appropriately and did another EKG. His kidney function is pretty crappy looking so they’re going to work on that today as well. I know I’ve said it a 1000 times, but I’ll continue to thank you all for the amazing love, encouragement, support and prayers over Everett and our family. It makes me cry every time. It means the world to us.”

A little update on that update…

Well first a sidenote:  Everett’s little body has been through the ringer.  With two back-to-back major open heart surgeries just days apart and big anatomy changes for his body to get use to things change so so quickly with his body and therefore my updates can change so quickly.  I cracked up because this morning I sent out a text to our family & friends that he was doing pretty well and then not minutes later I was sending out another text because his numbers we’re falling fast.  It’s the biggest rollercoaster and rightly so…he’s really been put through it.  End sidenote.

So this morning his numbers have just continued to shoot up and then plummet.  He yo-yos with the best of them.  His morning nurses are already talking about what an eventful day we’ve had already.  I told them he has a flare for the dramatics. 🙂  They shut off his cooling blanket because they really want to try letting him regulate his own little body, but he just struggles with it.  They are still adjusting things, but since Josh left this morning I’ve called him with two scares.  He will surely give me a heart attack, but at least I’m in the right place for it.  🙂  And in other news:  The Kelley children we’re beyond thrilled to see Josh and heard he got lots of hugs.

Thank you again as always for the prayers.  We are truly truly grateful.

I know I keep saying this, but I could never say enough how thankful we are for the outpouring of love and support and encouragement and prayers for Everett and our family.  I keep telling people how genuine I hope they know our words are because we really and truly mean those words from deep within our souls.  I literally sob over messages and texts and comments.  Sob, people.  I’m a mess 🙂  Last night Josh Kelley and I just sat with Everett and held his hand, sang to him and cheered him on.  I kissed his sweet swolen cheeks and his cold hands and feet.  I told him over and over how brave, strong and special he is.  I told him how loved he is.  I told him how many people are praying for him.

(I boohooed over this prayer sent to us from a new friend)

Josh went to grab some sleep around 3 am and I sat by Everett and read him all the comments on just yesterday’s post and comments from just one Facebook update.  They we’re so so many and I ended up falling asleep with my head on his hand, phone in hand and standing up 🙂  I wanted him to hear your words of life and love and fight.

So here’s a quick update for today.  I’m actually just copying and pasting from my Facebook and Instagram.  I am really trying to keep updates regular on here, but for quicker updates Facebook and Instagram are just easier to maneuver, so feel free to check those out.

“Josh and I were up most of the night holding Everett’s hand, singing to him and cheering him on. He had some leg movement in the night and you would have thought we won the lottery. They started as little twitches on their own, but several times when I would ask him to move his legs or wiggle his toes he would twitch on command. And Josh saw him move his hand once. Neurologists saw some normal dream like activity and some general slowing in the back, but are not concerned at this point. They also have seen no seizure activity. They are going to keep monitoring the EEG for a complete 24 hour period. For today’s plan they’ve started making gradual changes and are watching to see how his body handles them. They started first with his temperature by turning the cooling blanket off. That’s been super tricky and has spiraled him several times including yesterday. Just praying his body continues to respond positively. His stats, oxygen and bloodwork have still been bouncing a little with the changes so they put him back on paralysis meds to allow his body to not work as hard again and are giving him more blood. I actually went back to grab a few hours of sleep so that’s why such a late and long update. Sorry.  Thank you deeply for praying for him. We’ll continue to keep you posted as we can. God has been so gracious to us yet again and we will continue to thank Him for our amazing boy.”

(I love his nurses because they always tuck his donkey piñata, Fiesta, in tight beside him.)

A little update from that update is he has had to go back on the cooling blanket.  His temperature just continues to want to shoot up which throws all his numbers off and is what kicked off his cardiac crash yesterday.  His blood cultures have still not grown anything which is a good sign of no infection and they will continue to allow them to culture longer.  His team thinks his body is just “angry” after so much trauma and the multiple changes in his anatomy from surgeries.  They say it’s just a really fine dance we’re doing right now trying to get him to make strides forward, but not too quickly and watching everything so very carefully.

We are so thankful for the team of doctors and nurses and specialists and techs and staff members who are working around the clock to move Everett forward.  Mott is an outstanding place to be.  I wish you could have seen me hug our two respiratory therapists who we’re the ones giving him compressions.  One of which I bear hugged around the waste and sobbed into her chest.  I bring the awkward real well.  They literally saved his life along with the large team working vigorously around him.  Our doctor who called it and sent everyone into action, well, I told her 5,000 times thank you.  How do you ever get that deep message of gratitude across to the people who are loving your sick child, fighting for your sick child and working so tirelessly for your sick child?!?!

And thank you again and again for the prayers.  We honestly, truly, genuinely and deeply mean that and feel your love and encouragement as we all cheer Everett on!

PS: Hospitals are time warps and I just realized today I was off on my days in my post titles and fixed them.  Realized we’ve been in here longer than I thought.  Geez.