Ari’s new heart began beating in his chest spontaneously at 11:32 p.m. on Friday, March 3.
When we were sitting around the room Friday afternoon waiting on the cardiac floor at Boston Children’s Hospital, I asked Ari what song he wanted to hear. Immediate response: Scarlet Begonias into Fire on the Mountain
Until I typed this, I forgot this is the second appearance of Scarlet Begonias on Ari’s blog. I mentioned it in Circumcise Your Heart when Ari was 9 months old.
In that post I said the following:
Q. What have you learned from all this?
Heavens to Murgatroyd! No fair. There’s no way to answer that question with a joke without seeming either evasive or out of touch with the gravity of the situation.
And how could I possibly answer without sounding sanctimonious?
Here’s what I said, plus or minus:
Good friends of ours just lost their seven-year-old son to similar heart disease after a long and painful struggle. After a while, when they were ready, they posted a message online to friends and family. In that message, they said that their son’s life made their lives big and wide.
I might not have understood that before, but I understand it now.
Almost 5 years later, here I am listening to Scarlet / Fire, writing an FAQ post, and thinking the exact same thing: Ari makes our lives big and wide. And a lot of other people’s, too.
Once in a while you get shown the light in the strangest of places if you look at it right.
Meanwhile, we’ve had a lot of questions we thought it might be helpful to answer here on the blog.
What’s the current situation? How’s Ari?
As of now, he’s stable in the cardiac intensive care unit. He is deeply sedated and has a breathing tube in. He looks like he’s resting comfortably. Beyond that, he’s still in the weeds and has a lot of mostly anticipated challenges to overcome so there’s not much of a medical update.
What comes next short-term?
Ari has some tightness in his pulmonary vasculature. We’re treating that to calm it down, and it calms down fairly well with extraordinary medicine. But we need it to calm down with just everyday medicine. So we wait for that.
Once it’s calm enough, we pull the breathing tube and see how he does. Hopefully the tube stays out and he can breathe on his own without too much support.
He gets a ton of medicines right now, part cardiac, part to shut off his immune system.
Next week he gets a cardiac cath to check his pressures, and to do a biopsy. The biopsy is to see to what extent Ari is rejecting his new heart. We expect some level of rejection at this point as most kids like Ari have rejection at first. The hope is that it’s not too strong.
If it’s not too strong, and he’s gaining strength, we go to the floor to recover.
How long until Ari comes home?
Before this process, we were told to expect 1-3 months post-transplant. Right now it’s looking like…1-3 months. Shorter than that is possible but unlikely. Longer than that would mean his struggles are extraordinary. Expectations don’t really matter though. We’re day to day.
Is his heart fixed? Is he better now?
No, not really. Getting a new heart, we were told, is like trading one disease for another. He’ll be on a lifetime of meds, and there are a lot of health challenges and risks.
When he was listed, Ari was given about a 70% chance of surviving the first year. This is lower than other children with fewer risk factors. Most of the extra question marks are due to surviving the immediate transplant period, pulmonary vascular resistance, and rejection.
What are the risk factors?
Risk factors, in general, with heart transplant include:
1. Rejection: All transplanted patients risk rejection. Ari is at higher risk of rejection than most. Some rejection we expect. Severe rejection is life threatening.
2. Infection: Think of your immune system as an armed military unit that’s always busy fighting. With most transplant patients they said they take away the guns. With Ari, they are taking away the guns and the knives, and tying both hands behind his back. Eventually it will get better, but he will always be immune compromised.
3. Post transplant lymphoma: Wikipedia says it best.
4. Vasculopathy: Heart transplant patients eventually get coronary artery disease. The question is how long it takes to get it. We’ve been told 10 to 20 years, but there can be early onset.
5. Basket of risks: This is just a mix of everything, including medication side effects like stomach issues and kidney problems, which for transplant patients can get bad.
Will he definitely get these?
It’s all maybe. Add up all the maybes and we’ll see some of them for sure, but the hope is that whatever we see will be manageable, and we ‘ll keep on keeping on whatever happens.
Ari is certain to have some level of rejection. The hope is with a lot of meds we’ll be able to manage it. Over time it often gets better, especially after a year or so.
What happens when we get home?
Ari’s first year is likely to be challenging. After we go home, we’ll be back at the hospital several times a week at first, then several times a month. He’ll have regular caths and biopsies, and tons of other tests and checks. Home life should be pretty normal (as normal as it gets at our house) assuming he’s feeling okay.
How will his immune system be?
His immune system will be very weak for a while, and always somewhat compromised. When he goes to school and anyplace, we’ll have to take extra precautions, and have to hope that others will understand and respect that Ari can’t be around anyone who is sick and will have some restrictions. For example, Ari will never be able to be around non-immunized people. He’s protected by the ‘herd’ of everyone being immunized.
Steroids will be in his med cocktail for the rest of his life. Anyone who has been on steroids long term can tell you that being on steroids is no walk in the park. However, with the steroids and other meds, the idea is to get them to a level that isn’t medically challenging or too uncomfortable for Ari day to day.
For a while, we’ll wear masks when we go out.
What if he gets sick?
First sign of sniffles for a while it’s straight to BCH. The protocol is to assume it’s rejection until proven otherwise. If it’s not rejection, Ari will have a tough time fighting whatever it is off. Over time we’ll learn Ari and perhaps that will change some, but for now, we expect a lot of hospital visits and stays.
Other limitations?
- No Advil
- No grapefruit or derivatives (no Fresca!)
- No body piercings or tattoos
- No heavy contact sports varsity level (hockey, lacrosse, football) or competitive weight lifting
- Always strong sun screen
- No new pets for a while
- No picking up poop ever (sorry neighbors when he gets older and can walk Melody)
- Food limitations similar to being pregnant (no sushi, no deli, etc.)
- No water parks. Swimming in the lake? We’ll see…
- No Yankees paraphernalia
Medications?
Ari will be on a series of anti-rejection medications and steroids for the rest of his life. He may be on a ton of other things, too. We’ll see. He can never, ever miss a dose of the anti-rejection meds. Rejection can come on fast and there are no mulligans. You don’t want to give it an opening.
What about school?
We hope he can go back in September. We’ll need to be very careful about anyone being sick, and work with the school to make sure Ari isn’t in any situations where he is at higher risk for getting sick. Schools in Stow have been great to us and Ari so we’re excited to get him back.
Can we have visitors?
Right now it’s parents only. Over the coming months that will relax slowly. When we get home for a while we will be unlikely to have visitors in the early days, but over time Ari will be able to be around more people.
What about sports?
Ari should be able to do pretty much anything over time, though a few high contact sports will be a no.
How well do transplanted hearts do over time?
Hearts commonly do well for 15 years plus or minus. Can go much longer or much shorter. Right now he’d have to get re-listed if it fails. To do that he’d need to qualify again, meaning he’d need to be healthy enough all around to get one.
Will he get a new heart again someday then?
What they’re hoping is that 15 years from now medicine – rejection, cardiac, and everything else – will be much better. And perhaps they can grow him a heart. Or print one. Or something else. The idea is to buy 15+ years, have Ari finish college, and take it from there.
How can I help?
- You can make a donation in Ari’s name to the Ethan Lindberg Foundation.
Finally, please keep the donor and family in your thoughts. We are forever deeply grateful, and sorry for their unimaginable loss.
Echo of Hope 
So moved by Ari’s story. My 6tr old nephew was born with the same condition. He was born at Columbia Presphtarian in Manhattan New York.His parents worry everyday about Super Jack’s future. That’s is little nickname. He truly is a real Heart Hero, pictures on a billboard in Times Square. He is in our prayers every minute of every day. As we look to the future.Your beautiful Ari has shared a message of hope to so many people and surely to the doctors who work endlessly to find a way to help all of Gods precious angels. Know that Ari is now a heavenly angel who will forever watch over all doctors and others who are in need of better life. I pray for your family and that you can find peace and hope from all that Ari has given you.
[…] The operation occurred on March 3, and his new heart starting beating at 11.32pm that night, his family wrote on his website, Echo of Hope. […]
[…] The operation occurred on March 3, and his new heart starting beating at 11.32pm that night, his family wrote on his website, Echo of Hope. […]
[…] The operation occurred on March 3, and his new heart starting beating at 11.32pm that night, his family wrote on his website, Echo of Hope. […]
[…] The operation occurred on March 3, and his new heart starting beating at 11.32pm that night, his family wrote on his website, Echo of Hope. […]
[…] The operation occurred on March 3, and his new heart starting beating at 11.32pm that night, his family wrote on his website, Echo of Hope. […]
Be brave little warrior don’t loose hope God will heal you👊👊👊👊🙏🙏🙏
My dear Ari, I’m praying for your recovery! You’re are so brave! I hope everything will be better for you!
I saw your family’s video on Facebook, and I couldn’t help but notice the amazing similarities to my own had I had my transplant when I was 5 (I had it the day before my 21st birthday). I am so excited for your family and Ari. I know the next few weeks/months will be daunting, but it is an exciting time as he begins to adjust to his transplant and play sports again! Let me know if you have any questions or I can help in any way
My dear Ari,
I’m praying for your recovery and speed of healing. I pray for protection and abundance health through out your life and future. I speak blessings and miracles over your life and thank you for being a strong boy for your Mummy and Daddy…
2 1/2 years ago I met Ari’s Grandfather at Russo’s Tux, he was going to a Heart fundraiser where Ari’s father was speaking, he told me about Ari, I promised him I would pray for Ari and have everyday for 2 1-2 years.
Congrats Ari 😘 You are still in my prayers. I am also a Grandfather, I lost my Grandson 27 years ago, he was my first I now have 12. I am so happy Ari got a Heart. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
My son Simon was a patient on 8 east and we would see Ari walking through the halls with his dad and he would always say good morning with a big smile! So happy to hear about your transplant and how well you are doing. Simon says hello!
i pray for a long life for this little guy and I hope his future medical issues are few. I can’t help but think of the family that lost a little one and graciously donated the heart. What a magnificent thing to do.
God bless them and help them through a very sad time.
You were right, the video of Ari did make me cry. My thoughts and prayers are with Ari and his family, and pray for the best for him. I have 3 sons, older now, but Ari’s story made me feel so blessed that sons are healthy, and realize how fortunate I truly am.
Ari is a bright beautiful little boy and hope and pray he is going to get better and be home with his family soon.
Good luck Ari! My father had a heart transplant almost 4 years ago at Columbia Pres in NYC. He is doing amazing and I expect so will you! Keep fighting.
The boy has good taste in sports teams and hospitals!
God is great!! I’ll be praying for your little boy and your family. Please keep me posted on his recovery. I’ll ask my church to start praying for Ari as well. I’m a mother of four, and there is no greater love than the one we have for our children. I have a little cousin born with heart problems. He went under surgery few months after birth. God bless you always.
I couldn’t stop crying when I watched the video and read Ari’s story. What a sweet brave little boy. He looks so cute in his little paw patrol tshirt. My prayers are with Ari and his parents through this difficult stressful time.
No Yankees paraphernalia?!?!?!?!?! Sigh … 🙂
All the best & Good Luck!
I want to thank you for sharing this video. sometimes in life I get so wrapped up in what I’m not happy with..my job, my body, my receding hairline, my crappy love life. whatever it is I am so guilty of being negative and taking things for granted. I’m a grown man and this video moved me to tears. this little angel is brave beyond words and I will pray that the operation was a success. thank you again for reminder that life is truly precious and you have to be thankful for what you do have and not constantly hung up on what you don’t have. this video will serve as a constant reminder and has touched me in a way that you cannot understand. Bless you all.
Thank you for these updates and educating me on what Ari will experience for the majority of his life. He seems so smart and lovely from the YouTube video you posted and the activities and songs he seems to love. I wish you and your family the absolute best
I am praying for you and your son. We chose organ donation after my sister’s sudden death. Knowing those who received organs are living well is a source of great peace and even joy to me. I am so grateful for these people who are now part of my life.
Thank you for sharing your story. I am praying for healing for Ari.
Wishing your beautiful little man a speedy recovery and that he live a long and full wonderful life. Bless you all, thank you for sharing his story. Sending good vibes from Australia.
You all are incredibly strong and seem so full of love. I wish Ari a smooth transition into a new life and the both of you some time to breathe. Happiness and love from Germany.
What an amazing child Ari is.
How touching that you remember the loss another family suffered to give hope to your own.
Each August the 21st, I light a candle in remembrance of the man whose passing meant my mum had a bed in the ICU and received the care she needed which ultimately saved her life. Since that day 12 years ago, while I rejoice, I too in my thoughts and prayers know another family are not celebrating the day in the same way I am.
Look forward to reading updates on Ari. Big hug from Lanzarote x
Transplant medicine may advance so much in 15 years, it will all get better. God bless you Ari. You were on the news in Toronto tonight and many here are now praying for you.
I am alone in my office crying on my birthday. This brings back so many memories of my son’s surgeries – open heart at 3 months, multiple GI and liver surgeries, getting “poked” so many times. When your son asked if he got to go home the next day, it reminded me of everything we have gone through post surgery. It’s impossible to put in words the emotions I’ve had, or you are having. If you are ever in San Diego and you or your kid wants to learn to surf, please message me.
He will be on my prayers every night.
[…] last tidbit about Ari: He’s got great taste in music. According to his parents, there was one song he wanted to hear when he awoke from surgery: the live cut of The Grateful […]
I prayed for Ari and hope your boy gets better. Im a Bue Jays fan but I would give up ever winning a game again to keep your Ari here with us on Earth. I loved the video you posted on Youtube. I hope you get to see him on a first date, crossing the stage at all his graduations and coming home with Children of his own. Your experience have given me pause to think about the things I need to grateful for in my life and for this I thank you. God Bless and Be Well.
Neil McInnis
Canada
[…] last tidbit about Ari: He’s got great taste in music. According to his parents, there was one song he wanted to hear when he awoke from surgery: the live cut of The Grateful […]
Praying in Alabama!! Go Sox!!
Ari, we haven’t met, but I watched your video and I think you are AWESOME. And you are super lucky to have such an amazing mom and dad. I am sending you my best thoughts and hopes and wishes and I will for sure be rooting for the Red Sox this year! Much love, sweet boy.
All the way from the Netherlands; Ari, I don’t know who you are, but you just brought tears to my eyes. Glad to read that the surgery went well.
Much love ❤
[…] can find updates on Ari here. As of this writing, so far, so […]
Ohhhh… know what it feels like to be sitting on that floor and waiting… glad to hear the good news and sending all sorts of positive vibes your way. Go ARI!!!
His video is priceless. No 5 year old should have to know so much about anesthesia and poking and . . . . but he weathers on, as do you and Erica and your family. I’m so moved by your continued journey and sending huge hugs your way.
Wishing for a good recovery.
If he likes the Red Sox, i would love to send him some Boston stuff if you shoot me an address!
Rusnakj001@hawaii.rr.com
Thank you so much for this detailed update. Ari is is a strong little guy who will lead us all forward with his positive attitude, resiliency, and determination. He is my hero… As are his Mom and Dad. Hugs.
May God be with all of you….
Thanks so much for the update on Ari, he is such a sweet little boy and he will be in my prayers everyday. this is to much for a little boy to have to deal with and my heart breaks for him. But he is a little fighter and he will fight with all that he has to stay with us. God bless you all.
Sending you all my love and prayers. That was so generous of you to provide that update… I have been thinking of you constantly since I read the initial news and didn’t want to bother. Just know I’m watching and praying from a far. ❤
Thanks so much for this detailed update.! I have been praying for you all!
I’m so glad to hear he is stable. I’ve been thinking about him everyday. Be strong, and be brave little man. You are an inspiration to me and everyone else. G-d Bless you all. You are in my prayers.
You are all in my thoughts and prayers…constantly.
My son was in Children’s with Ari. He is just a day or two older. I think of you all often and am glad to hear the update. Our best to you all, you are amazing!
wow. What a thorough and amazing list. I dealt with a transplant in an older person about 30 years ago, and thought the problems were because of his age. It sounds like not. We will pray for the 15 years to turn to 30 to turn to 60 or more. We are with you in prayer.
Continued prayers for all of you…with much love…..and never Yankees paraphernalia!!!
Thank you so much for this very in depth details. May God Bless Ari and you with the health and perseverance required to restore Ari’s health. You will be in my prayers.
Thank you for the update. Sending Ari , the donor and all families involved the strength, and positive energy for continued positive updates. Continuing to hold you all in my prayers.
This is great news! He is a fighter! — Assumption College Swim Coach
Thank you for sharing the whole video of the day you told Ari about his new heart….it is very touching in it’s simplicity and you can see him thinking deeply about everything at once…So gentle Also for the updates on his condition and what to expect in the following weeks and months, can only hope all his bases are covered and he can hit a “homerun”. We’ve got your back.
What a special little boy. All of us who know him through your posts feel close to him and your family. Prayers are constant. Never give up.
Thank you Mike and Erica for sharing all that. My tears are flowing. I’ll keep my hopes high, and hope that all goes as well as it can. Sending so much love to you all.
He’s a tough kid and you are all special people.
No Yankees paraphernalia? Now, that’s just wrong, lol. I did however need that laugh in between my tears. You all will be in my continued prayers!
Thoughts and prayers for Ari and you all. One day at a time. I hope Ari recovers on the smoothest road possible.
Particularly enjoy the restriction on Yankee paraphernalia, although they didn’t teach us that one in medical school
Thank you for sharing, your strength amazes me. Praying for Ari and you all.
You and your family are in our thoughts and prayers that everything goes as smoothly as it can. I hope and pray the doctors are blessed with all the skill they need to help Ari.
Thank you so much for the update. Ari and all of you have been in my thoughts…much more than I initially thought. (I dreamed Ari and Eli and I were in a Studebaker on our way to see the Celtics and we couldn’t get from the highway to the Garden. Ari was driving.) I’ve said it before…Ari inspires me and the least I can do is continue to keep him close in my mind and heart. Love and deeply respectful gratitude to the donor family.
Keep on keepin on, Schultzes!
No Yankees paraphernalia LOL
I love your kid and I wish him a long happy life. I showed my 2 boys Ari’s strory and we’ve prayed for him at dinner time.. Prayer all the way from Costa Rica!
Mike & Erica,
Ari and the rest of the family are constantly in my thoughts and prayers! I pray everything will continue going in the right direction! ❤❤
What an amazing story about an amazing boy and his amazing family. Your strength is an inspiration, and we will continue to pray for all of you. Thanks for the update.
Thank you for taking the time to update. I have been thinking non stop about you all.
wonderful news. Sending thoughts, love and prayers for acceptance, quick recovery, lots of comfort, and a brand new life.