Update: Day 8

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.

Update: Day 7

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.

Update: Day 6 {night} + Extras

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.

Update: Day 6 {morning}

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.

Update: Day 5

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.

Update: Day 4 {Please Pray}

This day has been a world wind for sure and tops out as the hardest day being a parent.  Sweet sweet Everett.  He came out of surgery okay with oxygen saturations higher, his shunt in place and they even found one collateral they we’re able to coil off.  When we talked to Dr. Bove and heard how well he’d done we we’re just elated to say the least.  This felt like a giant win.

We finally got to see him and his other stats we’re still bouncing around, but his oxygen was up.  His stats we’re still wonky so they started him on the cooling blanket again and on the external pacemaker.  Things continued to not improve and his temperature continued to climb all while his oxygen saturations still stayed in a good area so they started packing him with ice as well.

Then around 6:40 this evening his blood pressure tanked and he went into cardiac arrest.  One of his doctors called it fast, they shut down his floor area, doors closed, staff came running, we moved out of the way, they opened the “arrest” box and set to work on our precious boy.  I got out one text for people to pray before I lost it.  Two of his respritory therapists started taking turns doing compressions.  One would go and then the other would rotate in real quick until they got a pulse.  It was absolutely surreal.

From the timeline I tracked through my one text I sent out it was about 7-8 minutes long, but felt like an effin’ life time.  I just begged God over and over again “Please God, please God, please God.”  I sobbed and felt like I might throw up.  Hands down our worst day as parents.  Easy.

They got Everett stable and then his team set to work trying to figure out what had just happened to our Shuai boy.  X-ray, EKG and bloodwork we’re taken immediately.  They’re culturing blood to check for an infection and have started him on a broad spectrum antibiotic.  They’ll do another more extensive EKG as well.  They took him off the paralysis meds and lowered his morphine in attempt to start trying to wake him up.

Currently he is not moving or waking up so they have brought in an EEG machine and are putting it on Everett’s head to start checking for brain activity and I can’t stop crying.  We have been so blown away by all the love and support and prayers and now I’m humbly asking you to keep praying over his sweet little body.  I promise I read every single comment, email, message and text.  I sob over them and I always try to respond when I can.  Please pray we get amazing results from the EEG and Everett starts to wake.  I desperately want my boy back and just want to scoop him up and go home.

After Everett’s crash today and we all recovered I read my Streams in a Dessert for July 1st.  The whole thing was great, but one line nailed me:

“O tired heart, believe and wait and pray.”

 And that’s what we are doing.  Although we are toast…we feel so sad and so overwhelmed and so discouraged for our crazy sweet boy, we know God is good and that never ever changes.  And now is the time, though our hearts and Everett’s may be tired, we will choose to believe and wait and pray.

Thank you so truly and so deeply for joining us in continuing to pray for Everett.

Update: Day 4 {in surgery}

Another quick update.  His heart cath yesterday was kind of good and kind of bad.  They we’re really hoping to find something they could actually go ahead and fix in the cath, but the cath only really revealed that his body is just not cooperating and moving blood as quickly as it needs to be.  After his cath he really struggled with heart rhythm, heart rate and blood pressure and was not responding to the external pacemaker. They got him stable, but he continued to remain on a cooling blanket because every time his temp hit a certain number it would shoot up and all his stats would go crazy.  They began talking with us about how they really needed to see improvements because it was looking like they would have to take him back into surgery to put in a shunt to help his low oxygen.

Last night Josh Kelley had a plane ticket booked for home early this morning, but around 11ish he said he just didn’t feel good about it so we text our sweet friend and she cancelled the ticket.  We went to sleep last night with him stable, but our sweet boy had another rough night and his oxygen sats continued to drop and his team fought with his bloodwork and other stats all night.  We woke up to news of surgery. His oxygen saturations we’re still too low while his heart rate & rhythm and blood pressure could not settle out.  They had exhausted all their tricks and he was just on too much support.

While we are incredibly bummed about this shunt…it likely throws a major kink in his candidacy for the Fontan he needs…we just want to see pink lips and get him back to sitting on counter tops. They took him back at 9 and we we’re prepared for no updates during the 4 hour surgery since staffing is low on the weekends, but his nurse in the ICU just called and said she heard he was doing well.

He is such a gift & joy.  I just hold his little cold, purple hand and sweep his hair to the side and kiss his sweet cheeks and whisper in his ear how much we love him.  I keep thanking God for his life and how he has just made us all the luckier.  We feel sad and definitely discouraged, but I refuse to ever not see God’s goodness and wonder.  We are holding onto hope for our Everett Louie Shuai and waiting expectantly for what all God has in store. Thank you for the continued prayers.

Update: Day 3

Just a quick update for today.  Everett’s bleeding finally started to decrease, but had a pretty rough day outside of that.  Sweet boy’s O2 sats just continued to decline all day and they ended up having to intubate him again.  They’re keeping him fully sedated and paralyzed to try and allow his body to rest and heal.  Stats ended up plummeting while intubated and they found a collapsed lung.  Got him stable and put him on an external pacemaker.  He’s currently in a heart cath and has been for the last 2 1/2 hours.  Right before taking him back they did remove two chest tubes and his pacemaker and he tolerated it well.  They are just trying to figure out what is going on inside his little body.

Josh is going to maybe try and go home tomorrow depending on the results of the cath.  We’re torn and nervous about what to do, so not sure what all to say about that.  Last night was really hard.  After they got him stable one the doctor’s said, “Now nobody even touch his bed.” 🙂  He’s definitely keeping his team on their toes.  His stats dropped some in the night and remained lower, but nothing that was crazy alarming.

I got a few hours of sleep.  Josh tried to sleep, but ended up making his way in and out of Shuai’s room in the night.  He did get a little more sleep this morning.  We both weren’t thrilled with the giant “Arrest” tackle box on the counter near Everett’s bed, but thankful they are ready if need be.

So now we wait and see what the team can come up with.  I honestly have not prayed that much while here…it kind of escapes my brain because I find myself holding my breath and then telling myself to just breathe.  The prayers you are praying on Everett’s behalf and on our behalf are truly felt and appreciated.  They are giving us life and encouragement.  When I finally go to bed each night…whatever the hour…I simply tell God “Thank you”…over and over and over again I say those words before falling asleep.  Another day and we’re so grateful for His goodness.  We’re so thankful for how far He’s brought Everett.  We’re so thankful for His loving hands which are carrying us day to day, hour to hour, minute to minute.  We’re so thankful for the people He has placed in our lives and the family He has gifted us with…all who are loving and serving our family so well and lifting Everett’s name up.  He is our God and He is good.  Our hearts will sing no other name than His.

Thank you, thank you for the continued prayers.  We truly mean that.