Ari took a few steps all by himself yesterday! He got on the scale for his daily weight and said, “Oooo, I feel something. I’m gonna walk!” We’re taking all the little victories we can get. The last few weeks have been rough. Roller coaster more than anything. For every little bit of good news, we are also hit with a challenge.
Ari took steps! But his liver is hard to the touch and is stressed. Ari’s heart rate is stable! Then it’s up 20 points for no reason. Ari is eating and not throwing up! But his last echo showed that his right atrium is now moderately to severely enlarged.
Because he’s been having trouble with disturbingly high heart rates, and his echo showing continuing issues, the team is searching for answers for what to do to help him. This morning Ari had a cath to get more data and get a new biopsy to see if the rejection is still holding off. The data showed he’s about the same. Still riding the line with pressures.
We won’t know about the biopsy until tomorrow, but nobody suspects active rejection right now as his immune system is completely shut off. One of the senior attending doctors told us, “Ari is the most immune compromised child I have ever cared for.” We are on pins and needles every day hoping he doesn’t get a cold. If he does, there is a good chance he wouldn’t be able to fight it off. Infections also add stress to his heart and body. Any new stresses to his heart could tip things in the wrong direction.
Meanwhile, Ari’s spirit amazes us every day. Yesterday he met two professional golfers who came by to visit. He was all excited, showing them videos of him on the golf course, and telling them he was “born with that swing.”
They asked Ari about the sports he liked. He rattled off the list, including football, telling them that he plays Madden on PS4. They told him Tom Brady was on the cover this year. Ari asked, “What about Jimmy Garoppolo?” They said, no, he hasn’t been on a cover. Ari responded, “Well, there’s always next year.”
He’s been playing Home Run Derby on MLB The Show on PS4, nailing home runs and doing play by play for each one. And of course he plays golf and baseball for physical therapy every day.
Even here in the most difficult of settings he is growing up and getting smarter. Pretty incredible given the tons of narcotics he’s still on. He asked a few days ago if we thought he’d be able to go home this year since, as he said, the year just started. He hasn’t really caught up to the fact that he lost two months of time after the arrest. He also wants to know when he can move back to 8 East because, when he’s there, he gets to leave the room sometimes.
He hasn’t left his room in 2 months. He gets to sit on the bed or the chair, and in between try to take a few steps before he gets exhausted, though yesterday he had 3 sessions playing hockey and baseball. He swung the bat pretty good for 5 minutes. Was funny watching him try to run tied to about 10 wires and 2,500 pounds of equipment. (I guess normal funny and CICU funny aren’t quite the same thing.)
Unfortunately, because we are not sure if he is getting better yet, we are parked in the CICU. Ari is on a ton of support that can only be given in an ICU. He hasn’t been able to wean off yet, though the last couple of days we made some snail’s pace progress. Will this last another few weeks? If he can wean off of nitric oxide this time (last time he failed) it could be. Month? Months? We have no idea. It all depends on whether his new heart can still recover enough from the damage sustained during the arrest and the rejection episode.
A few days ago we had the Red Sox game on. (And, at the same time, he had Red Sox highlights on the iPad. And he had me playing MLB on PS4.) He looked over at us and said, “There’s nothing better in the whole world than watching a Red Sox game with your family.”
Here’s hoping someday soon we’ll be able to do it right at Fenway with Ari, Lexi, and Eli.
P.S. We can’t thank everyone enough for all of the help and support. It’s hard for us here, but we realize it’s also hard for other people who depend on us and who are supporting us as the months wear on and on. Thank you doesn’t seem to cut it, but know that we mean it deeply.
Echo of Hope 
We named our daughter after Ari. Her name is Arie. Born 7/3/18
My heart goes out to this very precious angel from God and it brings tears to my eyes reading this story as I totally iunderstand what the family is feeling from having a grandson under go 5 major surgeries in his 1st 6.5yrs n 3 being open heart and isn’t wasn’t smooth. My prayers are with all of you🙏🏻 Dear God above please keep this precious boy safe and close to you, give his parents and family strength during this very hard and emotional time. I ask in Jesus name.🙏🏻
What a wonderful, beautiful boy. He, and you, are in my thoughts and prayers.
Ari is so special to me and I don’t even know him! Every time I read an update, I start crying and praying. God bless you and your family and your strong little man!! Thank you for sharing and I hope that this helps you with any and everything you need to keep Ari happy and on the road to health! Know you’ve got someone in Texas praying heavily for you! Love, Brianna
What an amazing little boy. We’re rooting hard for him here from Poughkeepsie, NY! His fierce determination is so inspirational!
I cannot even imagine how difficult it must be for you and I have no idea what to say, but I want you to know that I am standing in prayer with you from the Philippines.
Because Ari has touched that many lives, that far of a distance. You have such a beautiful, beautiful child.
My thoughts are with you.
Praying for this sweet boy everyday!🙏❤️🙏❤️🙏
You’ve raised an amazing child. He understands the most important stuff of life. Ari continues to teach me. I love what he said about watching a Red Sox game with his family. I thank you Ari, for all of the love and compassion you put out into the world. Your room in the CICU may feel small but your love is far and wide.
As always my thoughts and prayers continue for Ari and his loving family, it is beyond comprehension what you are all going through the ups and downs every day. Believe me when I say I truly understand your pain and frustration, you are not alone, but know that you are being lifted up in prayer by so many unknowns and that in itself is a blessing. With all my heart I am pulling for Ari and all of his family. May God bless us all with a miracle and a little more time.
Sincerely, Donna DeRosa-Ciampa
Sending prayers for all of you from way over here in Washington State.
As always praying for him, for the doctors, for you and your whole family. Ari is an amazing boy who touches many lives every day! God bless you, please keep the praying wall surrounding Ari now and forever!
I only know Ari and your family through this echo of hope blog. Today I was at the beach watching little boys carry pails of ocean water up from the shoreline. This is a timeless tradition, one my own sons participated in. I,thought of dear Ari and how I hope someday he and his siblings can carry salty water up from the beach in Wells, ME.
Go Ari Go!!!! So happy to hear that you are up walking!!!!!!
Thanks Mike for the update. Of course Ari (and y’all) are in my thoughts and prayers. I’m glad that Ari is getting to have some fun while he’s stuck in the ICU. Sending much love, and hope. ❤️
Love that wonderful Ari spirit! Praying for him and you all. Thanks for the update.
Mike, thank you so much for the update!! I cannot even count how many times a day I think about Ari and pray for him and your whole family!!! Sending love and prayers from South Carolina!!!
Thanks for the update. I love Ari’s personality! ❤️ Hoping and praying for progress and recovery. Hugs to all your family!💓🙏🏻
We continue to send lots of love and hugs xoxo and prayers for you and your family xoxo ❤️
Ari, no doubt you are an inspiration and hero to all of us. I pray for you a quick and safe recovery.
Ari’s parents, you are an inspiration to all families dealing with life issues. Stay strong, it can’t be easy. You are prayed for by many people. Sending good luck your way!
Thanks for the updates,
Prayers, Emily
Coming from the mother of a little boy named Ari who beat cancer, I got to tell you there’s something about Ari’s. I’ve been following your journey and sending you love and best wishes and it truly sounds like your Ari is a little lion like his name means. He is courageous and a fighter and I believe he will get through this and will become leader of the pack.
Not one day goes by that I don’t stop and pray and think about all of you . You’re updates are so informative and i look for them with fingers crossed and holding my breath . I love y’all!!
Thank you for the update. We all love Ari! I hope some Red Sox players go to see him one of these days – he would clearly be so thrilled. Mike and Erica, you are wonderful parents and in spite of everything, he is growing up blessed with you.
Mike, U are SUCH a MENSH for keeping us informed..Thank U!!!. We Pray daily that our Positive vibes/prayers(viaTemple Tifferet Shalom, Peabody..too)..will keep sending that much needed Healthy Charma to Ari’s body…xxxxooo Marge/David
He is the best. So are you and Erica. Funny how those golfers show up to help boost spirits and then get a life changing experience meeting Amazing Ari.
Thank you for the update. Ari and his
wonderful family are always in my thoughts
and prayers and I won’t stop until he
is home and well. I love you all.❤️
We admire Ari’s strength and mood. We’ll keep on praying for Ari’s recovery and for all your Family! Un fuerte abrazo a toda la Familia Schultz!
Hello Ari,
I am very happy and inspire to read every update in your blog. But at the same time I felt sad that you have to go through these kind of health issues.Despite of that, I believe in HOPE and faith that you will be completely healed and get to play baseball or whatever sports you love.. I have big hopes in time you will come home healthy and ready to play again with your beautiful siblings and of course to spend fun activities with your amazing parents.
You’re such an inspiration to every human being and a living hero to kids with CHD. You have amazing spirit and a child warrior with an incredible parents … Keep fighting Ari!
He inspires me. I don’t think I can say anything else.
Me too. Unbelievable spirit! Go Ari!