Hold the Line

May 27, 2017 by Mike Schultz

After 66 days in CICU, Ari transferred back to the floor yesterday. We’re still day to day in that at any time something can go haywire, but for now, we’re chillin’ on 8 East.

It’s just Ari and me here this weekend as everyone else is up in Maine. He just fell asleep after way too many Star Wars books, so I don’t have the usual window to wax philosophic about things.

But here are a few key points since the last post:

- Ari was able to wean off of nitric oxide and high flow oxygen this time. Last time he failed and we had to re-intubate. We’re still in a critical period in that it can take days or weeks for his heart to show stress from not having these supports so we could be back in CICU at any time. Meanwhile, the plan for this weekend: no medical changes and expect Ari to hold the line.

- It can change any day, but as of now the rejection is at bay. His immune system is still turned off so infection risk is still very high, and very scary.

- A few days ago in CICU Ari left the room for the first time in 65 days. The plan was to take 20 steps. Instead he went for a 20 minute walk around the unit and across the hall. On the way out of the room he said, “Zayde, grab my stuff.” Which stuff? “My baseball stuff.” He wanted to go to the first floor (same place we took the famous transplant-news video) and play. This was 2 days ago. Video in this post is yesterday, on his first 8 East walk. Notice he’s very intently working on his form. Listen for the ‘use my hips’ comment.

- A few days ago physical therapy came by to take Ari for a walk around the room. They brought him a walker to help! Ari looked at it, picked it up, and started carrying it around the room. Seems he didn’t need the walker.

- The nurse was reading him Harry Potter and the Chamber of Secrets. They were in the spider scene and she asked him, “Ari, are you going to dream about spiders tonight?” He said, “No, I usually dream about sports.”

- He’s still on milrinone, the direct infusion medication he was on before transplant. They gave his heart a big boost to support it post arrest. Starting Tuesday, assuming no steps back which, again, is a big assumption, we’ll begin attempting to wean off of milrinone. This will take a minimum of several weeks. There’s a chance he could go home on milrinone, which means he’ll essentially be going home in heart failure, but there’s a chance he can wean off while we are here.

- There are a few guys that come around playing music for the kids (in part funded by the Ethan Lindberg Foundation). They asked Ari if he had a song request? He replied, “Can you do Scarlet Begonias into Fire on the Mountain?” For those of you that don’t know it, it’s typically longer than 20 minutes. Hah! They learned it and played it for him a few days later.

- We showed him pictures of what the new house is going to look like. He said, “That’s incredible!” He wanted to know if we kept all of his stuff in his room, but he doesn’t care that the house will be different soon.

He woke up just now after an hour of napping and said, “I was not sleeping!” I said, “I know, you just closed your eyes for a bit.” He said, “No I didn’t!” He’s back asleep now. On a poop emoji pillow.

If you asked us 3 weeks ago what the odds were of us taking Ari home out the front door of the hospital, we would not have wanted to toss that coin. He’s still very fragile. Almost anything could tip him back over. But today things are looking a little better.

Posted in Uncategorized | 44 Comments

44 Responses

on June 12, 2017 at 11:00 am | Reply Cynthia Long

Hey Ari! Sam and I are here at Children’s today for a cardiac catheterization, and we are thinking of you. Tell all on 8 East we said hey, and keep up the good work😊💛💚💙💜❤️
on June 7, 2017 at 5:31 pm | Reply John Baker

Matthew 14:14
Matthew 14:35-36
1Peter 2:24
Isiah 53:5

Keep it up little man Gods hand is on you and you are a inspiration and a miracle.
on June 4, 2017 at 10:17 pm | Reply Becca

💙 this boy just melts my heart! Keep moving forward, Ari! I hope to see a video going viral of you, up to bat, the next baseball season!
on June 2, 2017 at 8:49 am | Reply Sara Jarvi

Moving to the floor is such a milestone! I remember the day our daughter “graduated ” from the CICU. Our family continues to send good wishes to all of you❤️❤️From a fellow transplant family
on June 1, 2017 at 9:50 pm | Reply Yvette Dizon

I do happy 😊 to see him back and holding his baseball ⚾️ stuff God will heal you in the name of Jesus!🙏🙏🙏 keep praying beside him dad and mom of Ari😘😘😘
on June 1, 2017 at 8:17 pm | Reply Liz N.

Please keep us posted
on June 1, 2017 at 8:15 pm | Reply Liz N.

I’m going put this little guy in my prayers. He sounds like a real trooper. Praying for your family as well.
on May 29, 2017 at 1:53 pm | Reply Paula

Keep Ari and your entire family in my prayers and thoughts everyday. Will continue to do so.
on May 28, 2017 at 11:57 pm | Reply Ginny Perron

You’re a force Ari! All of our prayers are working and you’re fighting strong everyday. It’s baby steps. Slow and steady wins the race. You’ve got this pal. I can’t wait to see you in a video at Fenway!!!
on May 28, 2017 at 9:18 pm | Reply David and Linda Deslauriers

Ari You are Amazing Keep up the good work you are a wonderful young Man. We continue to pray for you and your Family.
on May 28, 2017 at 7:53 pm | Reply Donna Appleton-Kelley

Ari, you are amazing…the Red Sox would be lucky to have you right now….Keep up the good work….
on May 28, 2017 at 6:47 pm | Reply Dana

My heart is so happy today. Reading this with a huge smile on my face… and tears in my eyes. Will as always keep Ari in my thoughts and prayers
on May 28, 2017 at 11:14 am | Reply Melody

I’m so pleased to see that Ari is holding steady. I enjoyed watching him swing his bat. 😍 Stay strong little one. May God continue to be with you and your family. 🙏🏻🙏🏻
on May 28, 2017 at 10:11 am | Reply Great Auntie Pat

So pleased with the current news. Tell Ari the Crusher is in the boatyard and he can come out with Auntie Pat on Finestkind or that Uncle Mike has his boat in the water and we can all go out on the Jessica Reid. Give him hugs and kisses from me. Stay strong,” Ari Strong”.
on May 28, 2017 at 9:31 am | Reply Jaocb T. Sydney

So glad that it was a good day and I hope for many more for all of you
on May 28, 2017 at 9:06 am | Reply Kathie

Nice hip movement Ari!!!! You are standing tall! Fabulous swing!!!! You are awesome Ari!
on May 28, 2017 at 7:33 am | Reply Lisa Hanson

That is great news! You are all in my thoughts and prayers.
on May 28, 2017 at 3:24 am | Reply Heidi Mollé - Lovatt

So lovely to see him out of bed . Thankyou for this update. And look at him swinging that bat and cracking that ball!! 😀
One day at a time, you can’t predict anything.
Keep fighting Ari.
Sending love and positive thoughts to you ALL from the Lovatts in Yorkshire England.
X❤X
on May 28, 2017 at 12:25 am | Reply Joanne oconnor

I pray everyday for this little hero to go home! It will happen God willing!
on May 27, 2017 at 10:21 pm | Reply Amy Keough

Scarlet Begonias into Fire on the Mountain?!?! I NEED this kid in my class for first grade at Center!! He’s my Deadhead counterpart!! Although, just make sure to tell him … The Woman Are Smarter😜
- on June 5, 2017 at 5:26 pm | Reply Keri
  
  IKR?!?! LOVE this kid!!
on May 27, 2017 at 9:51 pm | Reply Pam Bailey

Thank you for the update … glad to see prayers are being answered for Ari and family
on May 27, 2017 at 8:52 pm | Reply Andrea Kline

Best news ever….👏🏻👏🏻😇
on May 27, 2017 at 8:23 pm | Reply Kathy Cloutier

Go Ari, Go! Stow still looks the same! 🙂
on May 27, 2017 at 8:22 pm | Reply Mary Lou Cassavaugh

An amazing boy! Keeping you ALL in our prayers. ❤️❤️😊😊
on May 27, 2017 at 8:06 pm | Reply Patti Allen

So happy for him and you. He sounds like an incredible kid, cute personality. You’re all in our prayers. I love hearing the updates too.
on May 27, 2017 at 7:16 pm | Reply Carol Cohen

Just back from church a little while ago. Continuing to pray for Ari… I think Someone is listening!
on May 27, 2017 at 6:53 pm | Reply Cynthia Calabrese

Thank you for sharing dear Ari’s progress with us all,this weekend. Glad to know the rest of the family is enjoying time in Maine. You are all such a strong and loving family.
on May 27, 2017 at 6:15 pm | Reply Cynthia Ironson

Keep it up Ari! He is amazing … thinking about all of you!
on May 27, 2017 at 6:14 pm | Reply Jack Ducharme

Than you for the update, Mike! We continue our prayers for him and the rest of the family! Maybe he will be well enough for the Ducharme Reunion in August!
on May 27, 2017 at 5:42 pm | Reply Antonio

He’s a Guru for his Courage, Strength and Love for life.
on May 27, 2017 at 5:40 pm | Reply Claire C Thompson

Your willingness to share this very scary and special time with your very special boy is truly a gift. Thank you. That being said, it is wonderful that the rest of the family is in Maine, the house is in process, and you and Ari continue on this journey. Prayers continue healing is happening, and Ari is dreaming about sports! ⚾️🏀🏈⛳️
on May 27, 2017 at 5:19 pm | Reply Mary Jane Mulholland

Thanking God and continuing to pray for this incredible child and his incredible family. So much love and gratitude ❤️
on May 27, 2017 at 4:56 pm | Reply Auntie Sandi

Crying happy tears. That’s our Ari, and the Schultz sense of humor!
on May 27, 2017 at 4:51 pm | Reply Melissa Libby

Thank you for the continued updates. Every day counts. Love and hugs.
on May 27, 2017 at 4:49 pm | Reply Cynthia Long

From one Deadhead to another- Ari you are absolutely amazing, and Sam will be stoked to hear you’re back on 8 East:)
Keep on keeping on sweets ❤
on May 27, 2017 at 4:38 pm | Reply Maryann Maynard

Thanking God for answered prayers! May he continue to improve. 🙌🏻🙏🏻❤️
on May 27, 2017 at 4:30 pm | Reply Margaret

So very happy to hear this news.
on May 27, 2017 at 4:30 pm | Reply Cindy Morash

I just love this child! He is absolutely an amazing a strong young man who loves his life!! Way to go Team Schultz!!❤
on May 27, 2017 at 4:25 pm | Reply ellaaquino

I am so happy to Ari and for your entire family. You are the hero to Ari- Mike & Erica- such an amazing and resilient parents you are. Prayers and prayers for everyday progress from the Philippines..
on May 27, 2017 at 4:19 pm | Reply dbkline

Can’t stop crying. So happy for all of you.
on May 27, 2017 at 4:16 pm | Reply Corinne Hayes

So excited to see this update! His form is great, by the way!
on May 27, 2017 at 4:09 pm | Reply Jane

So pleased to hear the improvements and hope it continues. Thinking of you Ari, all the way from England, UK. Such a brave little boy.
on May 27, 2017 at 3:51 pm | Reply Lin Gruber

So pleased that he is making even a little progress. Prayers continue, as always. Keep strong, Mike and Erica.