We post this picture of Ari to raise awareness for the need for people to register as organ donors during #DonateLifeMonth. Approximately 300 pediatric heart transplants are performed each year. Too many children don’t survive the wait. Register here: #DonateLife.
Earlier this week Ari’s blood pressure was regularly bottoming out. By 10 a.m. Tuesday his systolic pressure had dipped into the 30s. I told Erica on the phone. She said, “Is this it? Should I rush in?”
Ari was struggling mightily. So much so the doctors had the conversation with us about how Ari wouldn’t survive CPR and ECMO again. Those are off the table. He needs to keep it together. Last of the 9 lives. Gunfight at the O.K. Corral.
Then, as he has done so often in his short life, he dug in and attacked, pressing the enemy with great fury and relentless determination.
Now he’s awake(!), alert, and royally pissed off. He still has the breathing tube in and hates it. He’s on enough narcotics to stop an elephant. (No joke.) Pressures are better but still concerning. He knows he can’t talk, so he keeps mouthing “Help me. Help me.”
So that’s what we’re doing. I just finished the night shift. We watched the Red Sox and Celtics, sang Scarlet/Fire, Tin Man and Rosanna, and tried to keep calm and…no, screw calm. Stay pissed and keep fighting.
Erica is with him now as we literally drag the rejection causing antibodies from his blood. I’m in the cafeteria grabbing breakfast and getting ready to dive back in. Dad just got here to tell Ari bad jokes and keep the Schultz legacy alive.
From here forward Ari has to hold the line, stay alert and moderately upset, and wean sedation in preparation for taking the breathing tube out. Can’t be on so much morphine that you don’t care about breathing once the tube is out. He needs to be ready to rock. Could take days or who knows how long. That’s a lot of Bruins highlights.
And he’s by no means out of any woods. When we ask the team what to expect in the days to come, they tell us they’re thinking more hour by hour. One thing at a time. Ari has been throwing curveballs left and right, including this morning with fevers and smaller blood pressure swings.
Meanwhile, we’re hammering at the rejection with every med and therapy possible. If it can be pushed back it will be. As we do this, infection becomes a dangerous threat. No immune system at all. No choice. This is the path. And a long path it is.
Still first things first, let’s get that tube out. Time to see what the man has to say.
***
Brief house update:
- We have a rental in Sudbury! 5 minutes from the house. Starts May 1. Will figure out mild homelessness until then.
- We’re putting plans together and permitting for the new house now. Planning to put something up very similar, just safer and better engineered. Permitting hopefully done in 8 weeks. Then we can get started.
As long as Ari walks out the front door of the hospital, though, we’ll be fine. The house is just a house. Home is where your family is.
Echo of Hope 
Just wondering if “gunfight at the O.K. Corral” is reffering to a drug called OKT3?
My heart and my prayers are going out to your family.❤️
[…] 生命維持装置につながれた5歳児(出典:https://echoofhope.org) […]
I continue to pray for Ari… and you all.
I am an organ donor and forever will be because of this story of inspiration. Fight Ari!
It is beyond doubt that Ari has an incredible life force, a burning flame of life that goes well beyond his young body. He has been given Mt Everest sized challenges, possibly to bring together a community of family, friends, a big medical team and others, stretching across America and the globe. Hope unites us and makes us believe anything is possible. A young dear friend recently had a double lung and liver transplant. After some very treacherous moments, he has now completed his 1st walk around the ward.
Go Ari Schultz! We are with you!!!
I remember when the doc said to us, “your daughter is awake and she’s pissed” and it brought us such hope in a scary time. I’m happy to report she’s 5 1/2 years post-transplant and doing well. We know Ari is on the same path and our family is sending good wishes to all of you. Keep up the good work, Ari!
Please always do this while your beside him keep on praying holding his 🤚 hand.i always do that when my son is very sick 😷 and have faith with him that God will heal him.i know Ari can do it!keep fighting and don’t loose hope🙏👊🙏👊
Do you know about Sequoia Custom Builders in Sherborn? They’re family friends of Judy Ahern Salsich. Maybe they can help- let us know. ❤
I’ve been praying even I’m at work and keep on browsing if there is new updates.what great news for my birthday!😘 Keep on praying beside Ari I used to do that when my son is also very sick.God will heal Ari have faith to him hope there is good news after this.please tell Ari keep on fighting and pray to God
You don’t know me, but I can’t thank you enough for continuing to bang the drum on organ donation awareness. Today is the anniversary of a dear friend’s double lung transplant and not a year goes by that I am not filled with gratitude for how her life was transformed and extended by the gift of life from another family. It is the ultimate gift of love. I can only send you and your family, and mostly your little warrior, strength and courage to continue your battle.
I’m Kelly’s mom and I want you to know I have been following Ari’s story he is in my prayers. Your little guy is a fighter.
Can I make a sizable donation to Ari’s family’s new house/home via my Fidelity Charitable Fund? Is the house fund a 501c?
Thank you,
Cynthia
What a generous offer! I believe the Greg Hill Foundation, which has designated Ari and the Schultz family as beneficiaries, is indeed a 501(c)3 according to a web search. Donation link is in the upper right corner of this page- https://www.thegreghillfoundation.org/product/the-schultz-family/ and you can email the Foundation here Info@thegreghillfoundation.org with any specific questions.
Go, Ari, go!
Keep on fighting, Ari!
Fervently praying for the little man…parents and siblings too …God bless you..
Please provide an update when possible.
Love and prayers,
Pam Bailey
Hello Mike, Ari, and Family… Since I saw you in the elevator in February, Sam has asked at his last two clinic visits if he could go up to visit Ari. He made quite an impression on Sam in the short time they spent together on 8 East 🙂 We had only been told that he was not up for visitors. I had absolutely no idea of the struggles your family is facing! Please know that we are thinking of you and sending positive, healing vibes from Cape Cod ❤
Im really pulling for him tell him to keep it up
I continue to think of you and continue to pray for you and your family For everything that is good there must be opposition and families are forever.
You are very much right, Ari is teaching us all how to be brave. Keep up the good fight Ari.
Thinking about and praying for Ari today and every day. Keep pushing, keep fighting Ari! You are surrounded by so much love.
“Keep fighting Ari! I think about you daily and pray for you as well! ❤️
I have been checking this every day, praying and hoping for Ari. God bless you.
Prayers everyday – I believe in the symbolism of Passover and Easter – for each Good Friday there is an Easter morning. Hope is NEVER lost!
Erica & Mike, loving prayers and high energy for Ari. I will ask my church family to send same. Marie, Tony B’s mother-in-law.
Sending warm wishes and healing thoughts your way multiple times a day!
Ari, you can do this. Keeping all or you in our prayers.
Keeping your Trooper in my thoughts! He’s a fighter… a special kind of person!
GO Ari, fight! SO many prayers being said for this little guy!
Love Stan and his bad jokes! I am at a loss for words. He is one tough dude and we continue to keep him & your family in our prayers!
I’m not even sure where to begin, or really even what to say. I have been following Ari’s journey since the video announcement that he would receive his new heart. In January of 2016 my son began his own journey for a new heart. Landon is 22 and like Ari he loves sports and especially his St. Louis Cardinals. He is currently living with an (LVAD) and patiently waiting.
I guess what I want to say is that our thoughts, hopes and prayers are with Ari and all of you who are there with him. Something I learned in 2016 was not just how to pray, but instead to believe. As I believe for my son I am also believing for Ari!!!!
Praying big time for this strong little man!!!!! May God be with you and bless you all……..send them strength to persevere in this battle. Amen
I first learned about Ari from two of my co-workers, Erica and Sam Linstrom from Stow. They have kept us updated on everything. After you posted this, Erica and Sam came into work and cheerfully yelled ‘Ari’s awake!’. Please know you have an entire bakery praying for you and your family, and when you’re ready, we’ll take the praying up a notch by delivering care packages. xoxo
I came across Ari through the People magazine post today on Facebook. I’m really pulling for you guys. Watching the video of him finding out he gets a new heart brought me to tears and to be honest just thinking about the video does. I’m currently in college studying to work in medicine and stories like Ari’s is why I’m going into medicine. I’m praying for you all.
Ari, you’re not alone in this fight. You have your awesome family, your phenomenal medical team and thousands of people across American all in your corner. I look forward to reading how you’ll be walking out of those hospital doors.
Much love and best wishes from Bemidji, Minnesota.
Ari is in my prayers everyday. Be strong little guy & fight with everything you have. So many people are cheering you on. ❤
Ari! We’re pulling for you, bases are loaded and you’re batting…our family, including one heart warrior, is sending strength.
Sending prayers from Maynard! Keep up the fight, Ari!
You are an amazing family of fighters. Prayers and more prayers.
You are an amazing family of fighters. Prayers and more prayers.
Praying several times a day for Ari, He is such a sweet little boy who just didn’t want to be sick and its going to be hard for him for quite awhile longer but if he makes it through it will all be so worth it. God bless you all.
Hello Ari- eversince I saw your video ( “so that I can go home tomorrow”) you’ve been always in my mind and heart. I’ve been praying for your and your family. You are indeed a little warrior, with so much spirit and a big dreams. I believe God will send His miracle to help you survive, get out of the hospital as a healthy kid “with a healthy heart”. I am praying so hard for a miracle and in Jesus name you are “healed”. I love you little boy- and I won’t stop praying for your recovery. You captured the heart of your entire country and the rest of the world. I am from the Philippines- I will ask for prayers to my friends and family. My mom- she’s been keeping you with her prayers. Love you! Praying so hard! God will make a way..
Keep up the fight Ari, all of Dads friends from the hillside know you have it in you, Ari strong forever
Praying hard for Ari and all of you. The power of love and prayers will get him on the other side of this. Ari has touched all of our hearts 💕
God bless you all so much. The updates are always appreciated and I know from experience it allows for a sense of control in a chaotic, uncontrollable and unpredictable time. I continue to keep all of you…especially Ari in my prayers.
Ari truly is the definition of unbelievable! Such strength for a little kid! My prayers continue constantly.
Thank you for the update. We pray day in and day out for Ari and he has become a regular part of our daily conversation. I am in awe of how well you two are keeping it together under all of this stress… You are the fighters who taught Ari everything he knows!
Praying for Ari, you all and your home every day. The Lake Family from Ames Iowa.
Ari, you are a fighter and you have the best team by your side…mom, and dad and your whole family, the medical team and us!! Lots of us!! Thinking of you from North Central Ma. …praying for you all ..hugs to all.
Thank you for your updates. Keep that sense of humor…you’re a good writer !!
I’m Tracie Charland’s mom-law and she has been telling me of this brave little guy for a while now. Know that she gives me updates all the time. I so hope that your little pissed off fighter keeps winning the rounds!
Love ❤️ and prayers coming your way from Montana.. Sweet angel 😇 fight!!!!
Been praying for you Arizona! I was in a coma 2 months and on ECMO for 2 wks about 2 years ago. I remember waking up too on the respirator. I still remember the annoying noises that it makes, and the cold air treatments they would put in it. I’m sure with all the medication your having some pretty bad dreams. Just remember they are dreams. They do not matter. You’ll know you are awake when you see the white board on the wall 😉 . You can beat this! Hopefully they will move you to a trach? That way you can mouth what you need. Hang in there good buddy. So wish I could ease your pain. I know what your feeling, just know you are not alone and there is a country praying for you. God gives his biggest battles to his toughest soldiers. You are strong and tough. Soon this will be a distant memory. Much love from vermont!
Prayers and love being sent your way. Stay strong and keep fighting!
Go Ari Go!!!!
We are with all of you in thought and prayer every step of the journey!
Lots of prayers and strength to Ari, and mom and dad.
Prayers from Costa Rica Ari!!!! You can get through this! Can’t wait to see a new picture of you and that smile
We are praying for Ari and your family. God really does listen…:). We hope for a positive outcome.
Praying all the time for Ari and you all! God bless and give Ari strength to keep healing!! We know God is great and hears our prayers, so we will continue the fight with you Ari and family!!!! ❤ from NH!!!
You don’t know me but I have taken care of a couple kids from whom u know through Boston childrens….I live in charleston and have been following ur story. I am a peds cardiac nurse and I want u to know that I will pray so hard for ur boy….just tell him to dig deep. He can do this!
you don’t know me, but i am praying for ari and for your family.
Mike, the words you employ to describe what Ari is going through are so moving. You are able to combine the serious details with a healthy dose of humor. You are a fitted writer and father to Ari. My thoughts and prayers are with you. Cynthia
I so wish I still lived in Boston so I could help you insome way, I too had a situation @ Children’s for over a month with my little girl, perseverance and prayer got us through. Please know I am praying so hard and reposting to get the message of inspiration and need out there for you. Gods blessings to you,
🙏🏻🙏🏻🙏🏻🙏🏻❤
more healing prayers for Ari. I have an army of people praying for him.
FIGHT FIGHT FIGHT ARI!!!!!!!! You have a big, wonderful life ahead of you!!!! xoxoxo
Schultz family, I live in Stow and would be happy to lend you my house until your rental in Sudbury starts. It’s on the small side, but I think it would be an adequate and comfortable local home base if you need it. Feel free to call if you’d like to learn more: 978-339-3412
Fight, Ari, fight!!! Win, Ari, win!!!
Keep fighting Ari, we’re pulling (and praying) for you! ❤ ❤ ❤
Ari is such a fighter, and has a huge army behind him!!!
Ari is amazing. Thinking about you all. Your strength is an inspiration.
Awake, yay!! Tube in while awake, ick!!! Keep being pissed Ari, it’ll keep you sharp. Love ya kid. Don’t be too hard on your Mom and Dad. They love you so much kiddo.
A lot of prayers for this precious little boy coming from South Carolina. Fight Ari fight!
General Ari “Lion heart” has great troops with his family, doctors, nurses, and community. I will pray for legions of angels for help. I love and miss you.
Fighting Baby Ari! We will pray for your healing! God bless you and your family ❤ Love from the Philippines ❤ Fighting!
“Now he’s awake(!), alert, and royally pissed off.” Love it. What an amazing fight he is putting up right now. I’m rooting for you all and wish I could do more. Give ’em hell Ari!
Come on Ari, stay strong little guy, you can pull through. There are so many prayers being said for you and your family. Keep fighting!
This story just breaks my heart to pieces. But I am so happy to hear Ari is pushing through this, I pray every day that he will be granted a miracle of some sort. Congrats to Ari for putting up such a fight!! I also wanted to say you are both such amazing parents. I can’t even imagine what this is doing to you both internally. But you are there for him and that is all that matters right now. That is all that matters to him. Somehow you will get through this, and I believe Ari will pull through. He seems to have the fight to want to live. He has not given up and that is a testament to his inner strength. Prayers for all of your during this difficult time. Please know you have oceans of people praying for you,
LOVE YOU GUYS!! thank you for the update.
Ari, ride this bull, man!
Dropping an F bomb and a prayer on your behalf.
home is where the family is. AMEN
I am praying for him everyday.
Ari is an inspiration. Not a day goes by where I don’t think of him and your family. Keep up the fight. Love to you all.