Leo Update: Day 11

Hi!  Leo has been quite busy here in Michigan healing and here we are on day 11.  He’s doing well, but still rocking some chest tubes and pain and no talk of home just yet.  Every day I sit in awe of his strength and resilience and how he is living out his brave-hearted lion name.  And of course, everyone loves Leo and thinks he’s the cutest thing around town.  He’s so loved and cared for.

He’s been battling nausea and vomiting and dehydration and figuring out medications and a high heart rate and chest tubes.  For days and days he wasn’t himself at all and rightly so.  His team started making us leave the floor 6 days post-op because sweet boy was feeling crummy physically and emotionally.  He was down and sad and missing home.  We loaded him and all his tubes and chords and IVs and pink puke bucket up and headed downstairs to look around.  We ventured into the gift shop and found an Elmo balloon and some “cannies” aka candies.  He wouldn’t eat the candy, but instead just held it tight in his hand.  When the cashier blew up his balloon it was the first real smile we’d seen since surgery.  The ultimate pick-me-up.  Straight joy!

So every day since we’ve ventured off the floor and added a balloon to his ever growing collection.  We joke that we’ll empty our bank account $4 at a time. 🙂  Some crazy kind people even sent him some balloons too.  They absolutely delight him…totally his fave!  On our second trip down to the gift shop in search of a Mickey Mouse balloon we’d seen, I mistakingly forgot Leo’s puke bucket.  As we were checking out he started to projectile vomit all over himself.  I instictively stuck out my hands to catch what I could and started asking the cashier…who was checking someone else out at the time…if she had any paper towels.  She looked at me and Leo and then ever so carefully unfolded a paper card bag and passed it over the counter.  He then puked in the tiny paper bag until the bottom broke through because thin paper + vomit = not a good puke container.   More hilariously awful chaos ensued and it was a disaster of a trip, but by God we got that Mickey Mouse balloon. 🙂

We finally got all his meds figured out, got the boy a new IV line and hydrated like there was no tomorrow.  I can’t remember if I already shared in this space that Leo was diagnosed with Autism earlier this year, but I’ve realized there’s even more to advocate for during hospital stays with a kiddo with special needs and I’m being pretty hardcore about it all.  His team is amazing and listen and take what I say seriously and after working together we’ve gotten a handle on how to make him feel best.  Cannot say enough good things about the cardiac department here at Mott Hospital.

Yesterday and today were our first real good days.  It kept feeling like not our best day, but not our worst either.  A mix of highs and lows, but these last two days have felt really good for him.  He still has chest tubes and some pain and sad moments when he’s homesick, but seeing his personality in full force again is so good for all of us.  We missed him a lot and it’s nice to have a large portion of our Leo back.

Josh has been handling everything back at home.  It’s all hard, but he’s working it out like he always does.  He’s working from home and doing all the things solo, but with all the humor and wit per his usual.  Harper, Hudson and Solomon all went to overnight church camp last Sunday and everyone is back at home now.  We always look forward to this week because the big kids have the best time ever and we always make it a yes week for the littles…pretty much anything goes.  I was really sad to miss out on this special week, but Josh Kelley did what Josh Kelley does best and handles our shit. 🙂  He worked from home all week and planned out fun things for Amon and Winter every day…minus the day Winter had a stomach bug.  And let’s not even discuss Hudson and Solomon having middle school orientation.  WHAT IN THE WORLD and HOW DO WE HAVE 3 MIDDLE SCHOOLERS!?!?!  So let me just proclaim my love for Josh Kelley once again because he’s too legit to quit.

Leo’s days are full of taking walks and rides and watching a gazillion movies and eating all the foods now that he can finally keep food down and getting his daily balloon and going outside in his stroller and blowing bubbles to expand those lungs and watching cars pull in and out of the hospital and painting and coloring and stickers and bossing us all around and hiding from his medications under his blankie and resting and facetiming with Dad and all the Kelley kiddos and being unimpressed with my chalk skillz.

I love that I am here with him.  It’s feels bizarre to be walking this recovery road out because I always wondered what recovery with Everett would have been like…what being out of the PICU would have been like.  Now here we are with Leo and I am just so crazy honored to be by his side helping and encouraging him and advocating for him.  What an immense privilege this is.

It’s also lonely.  I miss home and Josh and the kids and I’m exhausted as Leo needs help a lot at night.  Sad moments still hit me hard about Everett and that’s pretty sucko handling solo.  I’ve cried a lot and I miss my mom too.  I know without a doubt she would have been here to visit us and be her crazy self.  She would have gladly stepped in to help Josh whether it was having the other kiddos to sleepover or bring meals or do laundry or whatever…she always insisted on helping with all the things…and did it with the greatest joy…made us feel so crazy loved…and I miss that a lot.

Things I am loving at the hospital:

1. Facetiming with all our people and Winter’s hilarious personality via FaceTime.

2.  Soft pretzels as big as my head.  Leah, Ashley and Alissa had a 1lb ginormous and delicious soft pretzel delivered to the hospital.  It was HUGE and amazing.  Leo loved it just as much as I did and his nurses got a kick out of him lounging in bed with a pretzel delivered in a pizza box.

3.  Sweetart ropes.  OMG!!!!  If you have not had these and like candy BUY THESE ASAP!  They are amazing and I’ve already bought all the gift shop had and shared with the cashier that I did so she’d know to order more.  Seriously, favorite new candy…right up there with twin snakes.

Sidenote:  Found THIS on Amazon and am totally going to purchase for the Kelley kids one day.  Also, what a fun birthday gift for basically every kid I know.  SO MUCH FUN!  End Sidenote.

4.  Looking for rainbows everywhere.

5.  Practicing my lettering and creating with Leo.  I draw and/or write something every day and Leo paints and colors every day.  It makes this place feel more like home and we both need that.

And 6.  Therapy dogs that are the size of a small horse.  This is Darla and Darla absolutely made our day.  She was so sweet and gentle and THE BIGGEST DOG I’VE EVER SEEN.  And now I want a Great Dane.

Tomorrow Josh Kelley and the kids are coming up to visit.  Everyone is beyond excited and thrilled because we desperately miss one another.  We all cannot wait and we’ve got a special boy’s birthday to celebrate together.  So I’m off to shower because it’s been a while and try and get some back-to-school shopping done online…everyone starts school in 10 days….and maybe snag some sleep before our people arrive and the band is back together.

14 Comments

  1. Andie perona says:

    So glad to see his doing much better! Love reading your post and you being so open about everything. Thank You! You are an amazing Mom and it shows! As far as the Great Dane they are awesome dogs,I have 3, all laying in bed with me as I type. . Keep up all the good work Leo. ❤️❤️❤️❤️ (On a side note… thank you so very much for sending my sister Nina the Father’s Day card. This could be the sweetest thing I have ever seen)

  2. Lisa gilliam says:

    So glad to see these smiles. Prayers for continued healing and rest for mommy as well as Leo. ❤️❤️

  3. Barbcole says:

    These pictures took me on a roller coaster ride. All the emotions, I was smiling, crying, laughing, cooing and cheering you and brave Leo on. Thank you for sharing your life and being so open. So sorry for the loss of your sweet Momma. She and Everett are together watching everything. You are doing great and I know you will all have a love fest this weekend together. The kiddos are all getting so tall. Hugs from WV!

  4. So so glad Leo is doing well!!! Praying for all the good things for you and sleep!!

  5. Leo’s unimpressed face at your chalk art made me laugh. 🙂 Man, that grin with the Elmo balloon, though… no wonder you bought him more balloons!
    Thanks for sharing the ups and downs both. Glad to hear that he’s recovering well (minus the nausea, that’s not awesome) and that you have family on the way to visit. Keep on trucking, you hard-loving advocate, you got this!

  6. Good to hear from you & have this update. So glad Leo continues to improve . Hugs & love & light yo you mama .

    God is good
    ❤️

  7. Have you tried the Albanese gummy bears? The absolute best ever. Prayers for you and your family in this recovery time!

  8. Been thinking of all of you and praying for smooth steps – peace, grace and strength!

  9. MELISSA Parks says:

    Hi I saw the Donate button and wanted to offset the cost of all those balloons and “cannies”. But the link says it’s closed. Do you perhaps have a Venmo or other PayPal I could use? I’m praying for your lion hearted Leo.

  10. We absolutely love Mott’s! We’ll be there next month for another clinic day (ortho). Hopefully y’all be home for a long time by then! Praying for quick healing for Leo!

  11. Oh my gosh, please forgive me- I meant to say in my comment all 7 of your children. I was totally including Everett and don’t know who I missed.

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