***Update #2: Just after 10 a.m. Ari coded in the emergency department. He had over a half an hour of CPR and has been placed on life support in the cardiac intensive care unit. Path forward unknown.***
***Update #1: Spoke too soon about looking ahead more than one day at a time. We called 911 at 4:19 a.m. as Ari was having a seizure. Very scary. At the hospital now. Something is going on. We don’t know what.***
On June 16 Ari came home.
We were all pretty excited (and us old people were also pretty nervous), but no one was more excited than Lexi. She got her hero back and was completely beside herself. I guess we all got our hero back.
Of course, it didn’t take long for them to be at each other’s throats. A few days ago she was jumping around and knocked over Ari’s water. As we all know, Ari is pretty attached to his water.
What would you guess his reaction was? Tantrum? Fight? Crying?
Ari looked at Lexi deadpan and said, “When they put the sorting hat on you, I’m confident you’ll be placed in Slytherin House.” (He wasn’t quite as diplomatic when she yanked him from behind by his nasal cannula tubing so she could get to the sink first to wash her hands. 15 yard penalty on Lexi for egregious face mask.)
Ari’s a special kid for sure. I’m so proud about how he’s grown up. Somehow he figured out how to develop and learn like an almost sorta normal 5 year old. I bet he’ll be reading sometime soon, retains everything we read to him from Harry Potter, currently in the middle of book 3. And I’m telling him the Lord of the Rings story at meal times in great detail and he loves it. We just met Strider in Bree. Exciting ride ahead of us!
He’s still on oxygen 24/7, which is limiting, but he’s adjusted pretty well. 23 medications now down to 22 (at the moment)! Some are rough on his stomach, but others are just rough. He’s on a high enough steroid dose to have moon face, not sleep great, have some possible pre-diabetes developing, and won’t grow.
He’ll have to be on 1/3 of his steroid dose to allow his bones to be able to expand. Right now he’s stuck off the height chart and not getting anywhere near it for quite some time. Maybe next year, but for now, he needs the steroids to keep the rejection at bay.
At the hospital 2x a week for clinic and infusions. He hates blood draws and IVs. One session took 6 pokes and 2 hours, but besides all this his quality of life is great. He gets absolutely exhausted in 10 minutes of heat, but if it’s on the cooler side he can play for quite some time.
Meanwhile, since he’s been home we’ve:
- Been to the baseball field a few times. This is where he usually asks to go along with his basketball court in our back yard in Stow for hoops, golf, baseball, and swing set.
- Enjoyed Lexi’s birthday. This was a big thing for Ari as he was asking for months if he would be home for Lexi’s birthday. He made it, and is psyched to be home for Eli’s on August 5.
- Visited Grammie’s house in Maine. He loved lobster races and lobster eating, the beach, and mini-golf where he, of course, finished out the 18th with a hole in one.
- Taken to the kids first music concert, a Grateful Dead tribute band. Fun times! Ari loves The Dead.
- Had fun visits from the Assumption College baseball guys and coach. Lots of baseball and PS4. Ari fell asleep on one of the guys after a busy morning. After another visit, we promptly went inpatient (never mentioned that) for 24 hours of observation and infusions. Ari is not showing signs of improving, so the team wanted to have eyes on him. Not worse as far as we can tell, but not better.
- Had a special visit to the U.S. Senior Open at Salem Country Club. Met last year’s winner Gene Sauers, met the great Tom Watson, and spent a good 30 minutes hanging out alone with one of his all-time favorites Hale Irwin. Hale was awesome with Ari, and they had quite the connection.
- We also hung out last week at the site of our former house in Stow. The kids enjoyed watching the “dinosaur” chomp up the house. In typical sibling fashion they were fighting over whose room was eaten first. It’s officially a hole in the ground now. Bye bye house. We also got the official letter from the insurance company. Not one red cent. Ah, life.
And, perhaps the biggest news of all came in the form of a home visit by Christian Vasquez (catcher) and Xander Bogaerts (shortstop) of the Boston Red Sox! They stayed for two and a half hours playing baseball and flag football, and reading Ari stories in his room while Ari showed them all of his stuff. It was truly a magical day. Christian and Xander were very gracious and sweet with Ari.
Christian and Xander also told Ari that he’s been invited to throw out the first pitch at the August 27 Red Sox game! Will be another magical day. I have a feeling Stubhub will see a bit of a run on tickets in the next few days. We hope you can all come.
Two other pieces of news worth mentioning.
Ari Danger Schultz day in Stow will be on August 19. Noon to 7 p.m. in Stow. Click on the link for info and to RSVP. Should be lots of fun. Bouncy houses, multiple live bands, food trucks, breweries, wineries, raffles. And, most important of all (health permitting), Ari is planning to be there.
ESPN E:60 is planning to do a feature piece on Ari planned to air on September 3. They’ve been with us at the hospital and house filming, and will join us at Ari Danger Schultz day and at the Sox. Should be pretty cool.
Ari visits with golf legend Hale Irwin
As for our immediate future, Ari has a cath on Monday for a biopsy and to check pressures. We don’t expect new rejection on the biopsy, but who knows. As Ari hasn’t shown obvious signs of improvement cardiac-wise, we’re hopeful for even a glimpse that the pressures are getting better.
His last PVR – a measure of the pressure on his right heart and lungs – was 7. 7 is bad. This is why he needs oxygen, sildenafil, digoxin, amlodipine, lasix, diruil, spironolactone, and potassium chloride. All that and it’s still not enough. His heart needs to relax more, and recover more from his rejection and arrest. Time will tell.
Someone told me once that if you think too much about the future anxiety takes over. If you think too much about the past, you get depressed longing for the old days. We’re taking it one day at a time. Well, maybe we’re looking forward to throwing out the first pitch on August 27.
Why the hell not.
Echo of Hope 
I have followed Ari’s story since I stumbled upon your page while researching best hospitals for my nephew whose son was born with CHD and I have fallen in love with his bravery, courage and joy. I’m devastated to learn of his passing and I’m so very sorry for your loss. Prayers for peace and comfort.
I am so very sorry to hear of Ari’s passing. I was aware he had a seizure from July 20th and taken to ER and just today I found out the sad news. I want to offer my deepest condolences and compassion to Ari’s mother, father, siblings, relatives, friends and his many supporters who loved Ari in so many ways.
Below I would like to share how I will remember Ari and his loving family.
The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.
Blessings to your beautiful family – Ari will be watching and cheering you on from the best seat in heaven.
Thank you for fighting and not giving up on Ari since in the womb. Love, love is what you gave him and what he gave you. That is the best gift in this life! I have Familial Cardiomyopathy transplanted now 5 years my Father transplanted too. 8 months after his transplant he passed unexpectedly. It was hard to physically know and see him go through what I went through and then pass. But he told me as a Dad it was harder for him to see his baby girl through it. Watching your videos mad me think of the moments my Daddy brightened up my days in the hospital being by my side. I always thought we had more than 8 months. Your given this gift of a heart you pay such a hard price I felt shorted, you may too. But I’m thankful for everyday we had. I battle and I’m pretty sure you do too with the thought that if he didn’t get the heart would have he lived longer. We will never know but we got the call and we were transplanted for we were living on the edge of a cliff already. It was our gifted heart & our call.
It hurts in the core. I’m praying for you and your heart’s for matters of the hearts are never easy especially when a piece is missing.
Still can’t move on! I cried since the day I heard about the bad news😥 when I read the update that Ari has been cpr for 30 mins I not too worried because I know Ari fight back👊👊👊 I was shock and I cried since Friday till now! Can’t believe his gone now! I know Ari you’ll be happy now because there will be no pain,no tears 😭 I salute you for being brave👊👊👊your too lucky to Ari in your life what brave little warrior 😘😘😘rest in peace little angel God has plans for you.
I’m so very sorry for the loss of your dear son, Ari. He exuded such joy and light, so often smiling brightly, through the most difficult of times. Ari was and is an inspiration. I have been touched by his resiliency and his free spirit.
I hope your family can find comfort in one another. I wish all of you peaceful healing. I’m so sorry for this pain. Sending love and care to all of you.
I am so sorry for the loss of your sweet angel. Ari was such a brave and beautiful child…a reflection of your love and devotion. I don’t understand why this happens to the young, but I believe that his inner beauty was so strong that God wanted him sooner….to be a guardian and light that shines from heaven…to reach accross the vast skies and touch our hearts forever. And he is. My deepest condolences…what a beautiful child.
My heart felt sympathy for your tremendous loss. What a beautiful child. God will take great loving care of him now. God bless your family in this very difficult time.
So very sorry for your loss.. such a beautiful soul and handsome little boy..may God be with you and your family through this time of loss.. my thoughts and prayers are with you..
Dear Schultz family- I am so sorry for your loss. There are no words that can truly comfort you at a time like this, but I hope you realize that your sorrow is shared by many and that Ari and your entire family touched people around the world. Thank you for letting us share the ups and downs of this journey with you and for educating people about what a gift organ donation is. If there is anything any of us can do to help you get through horrible time, please don’t hesitate to ask.
Sorry for your loss, I you can take some comfort in knowing that Ari has touched so many and has made a big difference in this world and he will never be forgotten. God Bless all of you.
My heart breaks for all of you. 💔💔. Although you don’t know me I feel that I knew Ari through Genna & all the beautiful posts about him. He was a precious little boy who touched so many hearts. As you sit with broken hearts please know that thoughts, prayers & love are being sent your way. No words can make this any easier but treasure those precious moments you have in your heart with Ari, he will always be a part of you.
Dearest family, I share your loss… More importantly, however, I have been able to get to know, and love, your precious, Ari, via your posts. The heavens above us all have one heck of a new, eternally shinning, STAR. Well done, Team Ari! With prayerful love for you all.
Prayers for you all, so glad Ari got to play and be home. With his family he was blessed with a beautiful little spirit
I’m so, so sorry for your loss. I’m glad he got to spend some time at home and be a kid for a while. My thoughts are with you.
May your sweet, beautiful boy rest in peace. Thinking and praying for all of you during this very difficult time.
Love – from the Scully’s, a Maynard AVLL family.
I just learned of Ari’s passing and I am devastated. I am 36 months post transplant and have been watching Ari and cheering for him. I am 44 years old and know the struggle as a young heart disease patient. In fact I lost my father after his transplant and your story as a family has genuinely moved me. I cannot offer any words to make your loss go away but I am standing with you, crying and aching for your loss. Please celebrate the time you had and the memories you made and cherish them forever.
How long after Transplant did your Father pass? Mine @ 8 months. I’m 5 years post-op.
My dears, you do not know me but we have a friend in common. I have watched my son code in the ER during a terrifying seizure and I feel your pain. I think of you more often than strangers usually do, I reckon, but know you have support from down in Connecticut and I hope that things smooth out soon for you and Ari. Much much love.
Dear Mike, Erica, Ari and family – big prayers and thoughts and hugs from our family to yours.
Praying so hard for that amazing boy!!!
Sending much love to all of you!! 🙏🏻
Sending love from Maine. Always have your family in our thoughts.
I’m sending love and saying prayers for sweetest, Ari. xox
Praying like crazy for King Ari!
We are with you in thoughts and prayers. LMK if you need overnight coverage. XO
GOD BLESS😘😘😘😘
I am so sorry to hear this, and have your entire family in my thoughts. So happy you’ve had a great month at home together, but heartbroken today has been so awful. Thank you for keeping us updated. As always, sending you warm wishes!
You are all in my prayers.
Thank you for the update on Ari. Your explanations of the medical aspects are well-written and easy to understand. Thank you again for taking the time to write to us all about Ari. The doses of everyday sibling rivalry shows us that Ari is just like any other kid in that aspect and so much more than that in almost every other way! I shall be thinking of you all today.
Hey Ari! I love the Grateful Dead too, and will be seeing The Garcia Project tonight at the tent in Truro. Was that the same band you saw? I will show Sam your Dad’s update as soon as he gets home from work (he is a camp counselor for the Wellfleet Recreation Department). He will be stoked to hear about all of your exciting adventures! We just celebrated his birthday on July 14th (Bastille Day!) and took his boat out for tube rides in the bay. We would love to see you on the Cape sometime. Keep on keeping on, and we are sending our love from the Cape xoxoxo ❤
Ari and family are always in my prayers🙏🏻
He is so precious! Praying this latest hospital stay is just another small bump in the road to recovery for this precious boy.
Thank you for keeping us updated with your bit of whimsy thrown in. You have been busy with tons of fun stuff! I hope the August 27 Red Sox game is televised. I would love to see the opening pitch by our hero! Love you all!
God Bless you all- we are praying for Ari, especially with this new incident. You know that the Town of Wells sends their love.