Ari and I head to a Celtics game just before Ari went inpatient
Nobody should ever have to hold their 5-year-old’s hand through a cardiac arrest. 20 minutes felt like a second, and like forever. I am so grateful, however, that I could be there with him the whole time talking to him. I’m glad I could find the words for him, and have him to focus on me and not what was happening to him.
Right now, I got nothin’ much. At least nothing eloquent or insightful. Loss for words. This just all really sucks.
Ari went into cardiac arrest due to severe rejection at 8:20 p.m. on Wednesday, March 22. His heart rate first rose and then started to drop slowly before his heart gave out. When it reached about 70 beats per minute, they started CPR and the process of racing to the cardiac intensive care unit for emergency surgery to place him on ECMO, or heart/lung life support. The machines are now doing all the work of his heart. Ari’s is resting.
Given the acute rejection that had recurred and the trauma of the arrest, CPR, and emergency surgery, his heart did not beat for approximately 36 hours. The doctors told us this was to be expected. They hoped it would begin beating again before 72 hours. It did.
However, it’s not doing any work inside his body. Life support is doing everything. Being on ECMO carries with it very serious risks of bleeding, clotting, liver, kidney, lung, and other life threatening challenges. Ari has had quite a bit of bleeding issues and his kidneys aren’t working well right now.
The hope is that over the next week or two he’ll start to recover more on ECMO. Assuming he does, they’ll be able to turn down the settings and ask for participation from his heart to operate his circulation along with the machine.
Kind of like training wheels, at first they’ll keep the wheels on and hold the seat while he figures out how to pedal. Then they’ll take the wheels off if the pedaling and balance look ok. And then, at the very end, they’ll let go of the seat and see if he rides by himself.
He’s still near the beginning. Very shaky on the training wheels with millions of land mines in between where we are now and where we need to get to.
As for right now, I’m sitting with him in CICU with the Red Sox on. Bruins were on last night. Will put the Celtics on for him at 6. Have been listening to some Grateful Dead. And we’ve been reading all the sports articles on ESPN.
If he does get off ECMO, he’ll have the typical huge hills to climb coming off of a cardiac arrest and a long time sedated and tubed, but he’ll also still have his biggest challenge waiting for him: rejection. They were throwing the anti-rejection book at him before the arrest. Now everyone is putting their heads together to figure out how to throw it at him harder.
Meanwhile, he rests. We wait. We hope that he pees, stops bleeding, and the rest of his body and organs settle out so we can see if his heart is ready to participate or not. He also has no immune system right now. None. We hope for no infections or other complications. One more thing right now would be devastating.
On another note, I’m also at a loss for words with the outpouring of support (I know that sounds cliche, but that’s what it’s been) to allow us to focus on Ari while we also demolish and build a new house from scratch, and figure out where we, Lexi, and Eli will live. Still working on that as of now. Meanwhile, we’ve spent our last night in the house we loved so much.
For those of you that have called, messaged, emailed, and sent smoke signals we really appreciate it. It’s a little hard to respond to – or even keep track of – the messages and support people have sent our way, but it’s been amazing. We read them all and it means so very much.
With Ari, the other kids, and the house, we have been lifted up by everyone. It’s awful to have to go through this – terrible to have to watch your child suffer. Yet as we go from day to day, we continue to learn so much about kindness and love.
Our sincerest hope for Ari is that we can can spend the rest of our lives teaching him about what we’ve learned from all of you.
P.S. For a guy at a loss for words it seems like I got out about 900. Be very afraid if I get on a roll…
Echo of Hope 
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[…] a heart transplant at Boston Children’s Hospital. He suffered a cardiac arrest which put him on life support back in March, just weeks after the […]
[…] a heart transplant at Boston Children’s Hospital. He suffered a cardiac arrest which put him on life support back in March, just weeks after the […]
[…] a heart transplant at Boston Children’s Hospital. He suffered a cardiac arrest which put him on life support back in March, just weeks after the […]
[…] a heart transplant at Boston Children’s Hospital. He suffered a cardiac arrest which put him on life support back in March, just weeks after the […]
[…] Ari, who has suffered considering the fact that beginning from two coronary heart health conditions, very first went viral in March for his response to locating out he was acquiring a coronary heart transplant. Before long immediately after that, however, Ari went into cardiac arrest and his mothers and fathers all over again held their breath. […]
[…] he arrested on March 22 we had no idea if Ari would come back to us at all. And, if he did, whether our little boy would […]
Massive thoughts are with you from the uk. My nephew had a heart transplant in december 2016. The devastation you must be feeling is incomprehendable. From our family to yours, our thoughts and prayers are with you x x x
My Dear Schultz family,
I found Ari’s story in Yahoo Japan early this morning and could not stop reading about what Ari and the rest of the family had gone through. As a mother to a almost 4 year old boy and 1 year old girl, I can only imagine what you go through and Your heartache.
My family and I will be praying from Japan, that’s ari will fully recover, will grow up strong and healthy, and that the doctors out there will find a way to make his heart last for waaaaay more than 15 years (or figure out a way).
God bless.
My love and prayers go out to you and your family. You are a fantastic family with a beautiful young man. All my love from the UK. Xxx
Your sweet boy and your entire family is in prayers. I pray for healing and that the Lord will restore his little body so that he can live a long, fulfilling life. I pray for comfort for your family during his healing.
Praying for your precious family. For healing for your beautiful boy Ari and strength for you and the rest of your family. There is nothing impossible for God! God bless you all!
You are in my prayers. May the Lord wrap you in his arms and bring healing and a healthy heart for sweet Ari. God Bless you
My then 25 year old son spent 40 days on ECMO in 2015, 11 weeks in cardiac ICU, 7 weeks in rehab hospitals learning to walk again, a year with an LVAD and then a new heart. My heart goes out to you and your family. Just know that God holds Ari, and the rest of your family, in his hand and that’s the best place you can be.
We are praying for you and your family! Ari is a true inspiration and has captured the hearts of many. Best wishes from our family to yours. Stay strong!
Jesus bundle your arms around ari and his family. We pray hard for the family .
Prayers from North Dakota! You have a little fighter. Hoping his body get much needed rest and recovery time so he can hit this with full force.
Your pain and his hard fight for life touches me deeply…i will send all my prayers from denmark …
Continued prayers for Ari and the family. My heart sincerely aches for him and each of you. Yet, I am holding on to hope that one day each of us will look back at this with gratitude with Ari recovered, healed from rejection, and playing basketball, golf, baseball……
I don’t know you or your family, and just happened across your story on FB. I just want you to know that prayers are being lifted up for your family from a little town in Oregon.
I am praying for Ari in my daily prayers and will continue to do so. God Bless all of you.
I learned about your struggle via my cousin Adam’s Facebook page. I am praying for you with everything I have.
Sending countless prayers, love, and best wishes to Ari and the rest of your family. I saw a video of Ari earlier today when you told him the news about receiving his new heart.. Wow! The bravery and courage that little boy has is simply incredible. It brought me to tears. I will keep praying everyday for Ari and I pray that God grant healing powers unto Ari, that his body accepts his new heart, and that he can go home healthy and drink as many bottles of fresh water as his heart desires! Thank you Ari, for your strength and bravery. You are an inspiration to so many. Keep staying strong like you have been. And to Mike & Erica — you are incredible, incredible parents and have shown such amazing grace throughout which is nothing short of immaculate. Last thing, Ari, the jump shot is looking good from what I’ve seen! I’m looking forward to seeing how good it gets when you’re back on the court! Stay strong lil’ man. God Bless from Seattle, WA. – Leroy
I’m so sorry you have gone through this. My prayers are with all of you. My heart aches for you.
I’m also a mother of a heart warrior and have probably felt some of the same emotions you and yourwife have. I’ve seen miracles and felt fear, frustrations and wonder, sometimes on the same day.
Praying for little Ari.
God thank you for still helping Ari to fight for his illness…God I know you will touch Ari’s heart ❤️ and ask him to cooperate for Ari…for Ari’s dad keep on praying while holding his hand 🤚 ask Ari to trust God you know it really works because when my child was also very sick and under go in a surgery I used to do that all the time.keep faith from God and trust him he will heal Ari 👊👊👊🙏🙏🙏
dear Mike, I just want to reassure you that God is there with Ari. He loves your boy and will see him through. My friends, family and I are praying and fasting for Ari’s recovery, for your family’s strength and faith to stay strong, for the doctors wisdom. Your boy has changed my life and tought me a lesson about happiness, strength, love, hope, faith! Please give him a kiss from me. He is a blessing to thousands that have met him even if only by video. God bless. May Ari recover healthy to enjoy life and bring that beautiful smile for all of us to see, in Jesus name- Amen! Rosemary
Thank you for the update. Ari and the whole Schultz family have been in our thoughts and prayers. We are sending all the strength and love and positive vibes we can muster your way.
Havent prayed for many years, But i will tonight. Stay strong ari, and keep fighting!
I will send a donation, best reguards from norway❤️
My daughter had a liver transplant when she was just 17 months old. I know some of what you are going through. 2 months after transplant she clotted her hepatic artery, blocking the bile duct, and they wanted to list her for another transplant. We were devastated. Somehow, maybe all the prayers that were said on her behalf, but her liver re-vascularized and made a way to compensate passed that clot. She did well for 20 years. Now she has a liver tumor that is too risky to remove, and she is being listed for transplant again. We had 20 years with her, and hope to have many more. All hope is not lost for your sweet Ari. Things are rough right now, and this is probably the worst thing you have ever gone through, but kids are amazingly resilent, and stronger than you realize. I’m sure he’s fighting and is comforted by your presence. Sending continuous prayers for Ari and your family.
~Brenda in Denver, CO
You’ve got prayers from North Dakota for your sweet boy and your family. 💖
We will continue to lift Ari and all of you up in prayer. We believe in a God who still performs miracles, so that is what we will ask of Him. May God demonstrate His awesome love and strength to you during this difficult period. He uses all of His children to show His love and encourages us to call on Him when we are weak, He makes us strong! May God Bless you all!!
All the prayers and love to you 5. Prayers and more prayers.
Ever since stumbling upon this story I have kept Ari in my thoughts and prayers. You can tell he is such a sweet, strong boy and is so loved! Sending lots of prayers from Oregon.
I am praying for you and your family as I have since I started following Ari’s story. As you can tell there are a lot of praying for Ari and your family. My youngest great grand daughter just went through open heart surgery when she was 14 hours old for Total Anomalous Pulmonary Venous Return in Little Rock, Arkansas. She just went home a couple of weeks ago. So I completely understand where you are with feelings. I honestly think though that following your story with Ari has helped me to handle this situation. Thank you for sharing and keeping us updated on his condition.
Thinking and praying for your sweet Ari and your entire family. What an amazing little boy you have!
Praying for your little guy. Sending you all love and positivity! The Angel of health and The Angel of Mercy be by your side. 😇 🙏🏼 ❤️
I saw this story on Monica Ortiz’s FB page. I work in heart transplant at BWH. I showed the nurses I work with the video when You told Ari he was going to get a new heart. I just saw this recent update- im so sorry you are going through this- We are pulling for you and will be thinking of you these next few days. ECMO will give Ari a break and let his body and the medication work at 100% to clear out the rejection. Children’s hospital is out of this world amazing. I can’t imagine what you’re going through but we are here, next door, pulling for all you. XOXO
Hang in there, buddy! Praying for you every single night!
Sending positive thoughts and light to Ari and your family. Although, you don’t know us, almost 3 years ago(April 1st) my son had heart surgery and I believe that he was able to recover, in part due to the collective thoughts and prayers of loved ones and strangers. Wishing Ari all the best and know from reading about him, he is a real warrior.
Hi Schultz family,
Our son, Hudson, was recovering from a transplant during one of Ari’s first visits at the Children’s CICU, but I’m not sure we met in person. We’ve followed your story for years, and try to send positive energy any time you need it. Ari’s in our thoughts, and Hudson (and his little sisters) say hi and send high-fives!
Dear Mike & Erica,
You have all been in our constant thoughts and prayers. We love y’all and wish there was more we could do for you.
You don’t know us but we are parents of Jenny Blounts and grandparents of Tabitha and Hazel Blounts. We have heard about Ari and our hearts are breaking. We , of course, also heard about your home and just have had you in our prayers from the day we heard about all of this. Please know we are praying for you daily and are now following your blog. Ari is a beautiful precious little boy and hoping God brings him through all of this. I am one to never lose hope, so hope it helps your family. God bless you all. Judy and Tom Chrest
Your family has been in my thoughts and prayers all weekend. Actually ever since I learned about the Amazing Ari and Magnificent Mike his father and the Fantastic Females that make up the other part of the this family.
Ari has indeed become a teacher to us all. His entire family has graced us with their ability to go forward no matter what is tossed in front of them. I wrote the Ellen television show and contacted someone of financial means with the hopes of lessening the financial burden you face in rebuilding your family home. Please continue to stay strong. As his father, Mike is indeed stronger than Superman times a thousand. Having the Red Sox etc. on for Ari is the best medicine for both father and son. Please know so many many people are pulling for you!
Thank you for keeping us all updated. We pray fervently for Ari, for rest and restoration for hi body and for you all. A loss for words is how we all feel. I pray you feel and know our love and support. Our hearts are breaking and hoping and holding on with you.
So much love and endless prayers are being sent to your sweet boy and your family by so many family, friends and strangers. May all the support help Ari continue on his long road to healing and help you and your wife be as strong as you can during this excruciating period of time. To share the latest update, despite what you are coping with, was extremely thoughtful of you and very much appreciated by many. Sending infinite healing wishes to Ari!!
You are never far from my thoughts
Continued love and prayers being sent your way. I lost my house while watching my 3-year-old son battle brain cancer in 2010. Not the same, I know, but I remember the crushing feeling of helplessness. Stick together, let love, your family’s, friends’, and that of the public outpouring, lift you up and heal you. And whatever you do, BELIEVE. Miracles happen, I swear to you that they do. God bless and GO ARI!!!
Thank you for the update, beautifully written for someone low on words. Ari continues to be in our thoughts. We are so glad to hear his heart has started beating, even if it is only to let it’s presence be known!
Keep it up little man, you are a warrior!
I know how difficult this all is. We spent 4 years more or less at the Brigham with my Dad before his heart transplant. I read your blog and think about how similar our stories are about different procedures Ari has had. You become a medical expert without knowing it. Would I give that all up to never have gone through any of it? Sure, but being his advocate helped when he couldn’t advocate for himself. Ari is a lucky little guy to have parents who are there for him and understand his needs. Our family prays for you everyday as does the Assumption College community. My students “check” on Ari every day and pray for him. You have a huge army of people rooting for Ari and your family. All you can do is exactly what you are doing, take it one day at a time and hold his hand whenever you can.
My heart is breaking for you guys. I pray that Ari finds the strength to get through this and is able to live a happy life with u and his beautiful family. Im sure you have all of Australia’s love and support x
Thank you for sharing! Praying for Ari and sending love and strength to your beautiful family!
Your entire family is in our thoughts and prayers!! I know you hear this a lot, but we are here if you need anything. Know that our angel, Jackson, is watching over all of you and keeping you safe. Much love from South Carolina
Thank you for the extremely eloquent and brave update, Mike. Your entire family is in my thoughts constantly and I am astounded by your strength in the face of such adversity. Sending healing wishes Ari’s way!
Sending love. Ari is such a strong guy with such a strong family. Xo
Mike, I’ve been praying for you all and sharing your story as much as possible. I remember how hard that little guy worked for us at EI! I hear his little voice and I smile. As you told me the first day we met, he’s a special little guy. I am beyond heartbroken for all he and you all are going through. Please tell Erica I’m praying and give Ari a little hug from “Nette.”
Best, Jannette
I’m amazed by your eloquence and the clarity with which you are able to explain Ari’s situation. Our family has had Ari in our thoughts constantly. Sending love from our little corner of Stow.
I’m amazed by your eloquence and the clarity with which you are able to explain Ari’s situation. Our family has had Ari in our thoughts constantly. Sending love from our little corner of Stow.
You and Erica are amazing people. My thoughts and prayers are for you both and def Ari.
As always prayers and strength for all of you! I know it’s hard but thank you for the update. Love to you all! One day at a time.
Oh, Erica, I hate this so much – can I ask if you were there when Ari went into cardiac arrest?
Mike, Thanks for the detailed update. Ari is such a special boy. I pray for strength for him and your family constantly.
Ari is constantly on my mind. Thank you so much for the update. I know it must be very difficult to experience it all over again as you write.
Much much love and many many prayers from NC & SC. Thank you for taking the time to update us.
Keeping you all in my thoughts and prayers. Sending lots of love and hugs. God Bless you all.
Erica, we are keeping you and your family in our thoughts and prayers. We have shared your story with our “church family” here in South Dakota, and though they’ve never met you, they are praying, too. Love to you – JEN & MIKE
Praying for Beautiful Ari and your amazingly. Wonderful family. I know everything will be ok. He is so strong and so brave. He is lucky to have you all in his life. I hope to meet you all one day. Xoxo❤️ 🙏🏻😇🙏🏻😇 ❤
Praying for Beautiful Ari and your amazingly. Wonderful family. I know everything will be ok. He is so strong and so brave. He is lucky to have you all in his life. I hope to meet you all one day. Xoxo 🙏🏻😇🙏🏻😇
Our thoughts and prayers are with you and your family. Stay strong and have faith!
Thank you for the update so sorry your family is going thru this we pray Ari comes through this he is a miracle child and has come thru so much in his life and touchéd so many God and His angels are protecting ur sweet child praying you are alwys in our thoughts& hearts❤🙏🏻❤
Checking on you guys several times a day, all our love from one heart family to another 💙❤️💙❤️💙
Thank you for the detailed update. It seems the entire world is in Ari’s corner and yours. We add our voices of love, hope and healing thoughts for Ari. Love you guys.
Sending positive thoughts and prayers for you, Ari and your family.
I’ll be praying for you all and your sweet boy.
Thinking of your family. You are in our prayers
Constantly in our thoughts and prayers. Love and light to you and your family.
Love, another peds heart transplant family. ❤
Thank you, Mike, for taking the time to write personally to update the army of people who care so much about Ari and your family. I was holding my breath for the past three days and am moved to tears that the little tyke is still with us. Major challenges of course, but SO glad the heart is beating. God Bless you all, we are all so so strongly pulling for Ari and your family.
I have been praying for your sweet Ari many many times a day. He has been on my mind non-stop. Thank you for the update. Sending you all so much love. (Friend of Tracy J. And mom of Evan also a heart warrior).
I have refrained from writing all this time, not wanting to burden you. But you say you are reading messages and they do help lift your spirits knowing that others are thinking of you and Ari. I am in that category having had all of you in my thoughts and prayers from the start. Ari is a teacher. He has taught us pure love and the joy of life. May he continue to teach us.
Continued prayers for Ari and for your family
Prayers being sent your way.
Thanking of you buddy. Many prayers heading your way from the Riles family. We love Ari.
He is still with us!!!!! Thank you, God!!!!
Our thoughts and prayers are with all of you. Ari is one very resilient little guy.
Hang in there! He will lead the way
.
Thank you for the update and we continue with hugs and prayers for you and your family. Although we have never met you, we think of all of you and how things are going on a daily basis. We wish you well…you have a beautiful family and a most precious little fighter….
We are keeping you all in our prayers constantly. He is a strong willed little guy, keep the faith! ðâ¤
Sent from my iPhone
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