Earlier this week Ari got a visit from NHL all star Nick Foligno of the Columbus Blue Jackets. Biggest smiles we had in a long time! Ari loves his NHL and his friend Nick. Photo used with permission.
On Thursday morning just before noon we had a great baseball session in bed with Ari. He was getting stronger, sitting up in bed, and in a great mood. He was the catcher and umpire, putting down signs for pitches: 4 for the changeup, 3 for the curve, and 2 for the slider. Of course all the pitches were strikes. Erica was up. She said, “Ari, that one was outside.”
According to him, “No! It was right across the plate.” When he was up, he got a hit and said, “I need a pinch runner.” Ari’s primary cardiologist walked in just in time to oblige and play for a bit. She asked Ari what day it was. He said, “It’s karate chop day!” Next she asked, “When can it be kissing day?” He said, “Not until I’m older, so it’s karate chop day.”
Then she asked us to step outside to talk.
By 12:30 p.m. Ari was heavily sedated and placed back on the breathing tube.
Over the past week or so Ari’s heart rate has been climbing slowly but steadily. He was not able to keep anything down. Not even his precious water, which he was craving like a lunatic. On Thursday morning we sounded the alarm that his heart rate was rising even more, that he didn’t look good, and was deteriorating rapidly. (Good mood not withstanding.)
With his resting heart rate rising to 165 the team was concerned that he wouldn’t be able to “maintain his circulation,” which is a nice way of saying his heart would probably give out again if we didn’t act quickly.
His heart was weary, and needed a rest. Sedation and a breathing tube is good for that, so back on he went. With his injured and delicate right ventricle, the intubation itself was dangerous. ECMO is no longer an option. There was a chance he wouldn’t survive the intubation.
He did. Now he’s resting.
It’s difficult to discern exactly what is going on. There are two working theories.
- He has smoldering antibody mediated rejection that is tipping his heart into an unsustainable zone.
- He’s fluid overloaded, putting pressure on his right heart that is stiff from the transplant and the cardiac arrest. To compensate his body is asking for more cardiac output, and thus the rise in his heart rate.
Of course, it could be a combination of the two. Or something else.
We’re really hoping for #2. It’s quite plausible this is what it is. The anti-rejection regimen he is on is as aggressive as it can get. They’ve never done what they’re doing for Ari to hold off the rejection at least while he’s in the cardiac intensive care unit.
The hope is that if we do this long enough, and push the antibodies down hard enough, his immune system may notice the antibodies are there, but will eventually ignore them. This is also plausible.
No cause or eventuality is likely though. There are no odds to give. We just have to hope it all shakes out like we need it to and get our baseball player back for a long time. I’m hoping long enough to make it to kissing day, which should be quite the while.
The plan is to get Ari to lose 3 pounds or so of fluid while he’s resting. Really dry him out (which has its own complications) to see if we can decrease the pressure on his right heart. When that happens we’ll pull the breathing tube and start over.
Unfortunately, one of his medications that he needs to fight rejection also pressures his kidneys. His levels of this medication are way too high right now. He’s not peeing enough. So we’re not yet making progress on dropping the water weight. In fact, he’s going the wrong way.
He’s safe as he can be at the moment on the breathing tube though, which is the idea. We’re adjusting that med and waiting for his kidneys to start doing their job well enough again so he pees off what he needs to pee off.
Meanwhile, the order of the day is rest for the weary.
At least for one of us.
P.S. Have to say again how overwhelmed we are with the amazing support for us as a family caring for our kids and getting to a rental house, which should happen next week, and getting a new house underway. Just got official word as well that there is no insurance coverage.
Regardless, the plan for the new house is to put up the same size and type of house on the same spot inside the same footprint. It’ll be laid out differently inside, build to modern safety and construction standards, but it’ll essentially be what we had.
Know anyone in the building trades who might be interested in helping with the house? Contact Dan James at djames@erland.com or 781-844-5688.
Our life mission – once we get back to one – will be to pay forward all of the kindness we have been shown.
Echo of Hope 
I was wondering if I wanted to make him something would I just send it to the p.o box?
Sure
Good evening. Not sure if this is the right place to reach out, but I belong to a group called the Chive. A collective group of misfits across the country that party with a purpose and try to make the world 10% happier. The local New England Chive chapter is interested in having a field day with Ari. Proceeds from the event being donated to the family. Let us know if thisnis something you’d be interested in. You can reach us at Contact@chivenewengland.com or Chiveonnewengland@gmail.com sincerely, The Chive New England team
I am thinking about you and your family at this difficult time…… I hope your strong will and faith can pull you thru.. 🌈🤗♥️
Stay strong Ari, you’re such a brave little man. Stay smiling and kerp your chin up.
Mom and Dad,
You are two of the strongest people ive seen. God bless you and your little boy
Please keep on praying 🙏🙏🙏don’t loose hope! Pray together with Ari God will heal him in the name of Jesus. Hope to see updates what will be his situation now.
God bless and God allow you rest.
The red band remains 24/7 on my right wrist for Ari and he and you are in my prayers daily.
After watching the video i checked the comments for an update 😢, it’s 4:30am here and i’m crying. Stay strong baby.. ❤ i will pray for your fast recovery. ❤
Hello Ari,
I hope you are doing better sweet heart. You are such a brave boy! I will keep you in my prayers for fast healing. You keep fighting baby…
Mom and Dad,
I admire your strength and courage. My thoughts and prayers are with you.
❤
This sweet little guy gives me hope💖💖
Just saw his story on Facebook. I was moved to get on my knees and pray for his complete healing. God has a plan. I pray that Ari can tell others what an awesome God we have when he is 10..15..20..30 and older!! Having a 4 year old son myself, I can’t imagine what ya’ll go through as parents. May God strengthen you daily and give you the miracle of a healthy Ari!
I first read about your story a month or so ago and the news was not good. I don’t know you but I cried for an hour, and I’ve been thinking of you ever since. I was reluctant to click your story when it came up on FB again today but I’m so happy I did. You’ve still got a lot road but you’ve got a lot of people pulling for you. Keep fighting, Ari!
My prayers are with you little angel. May Allah protect you and give u long ife ameen. Mum dad stay strong our prayers are with u. I wish I could do more apart from praying. Lots of hugs for u little angel Ari
Hi Ari, I’ve never met you before but I can only imagine what an amazing kid you must be. Mindy has told me all about you and fight for life. I have a little boy of my own that’s about your age. As a parent I know your mom and dad must love you so much. Hopefully one day our paths will cross. It would be a great honor to meet you and your family. Hang in there bud! Our thoughts and prayers are coming all the way from Utah.
love, hugs and prayers. God Bless.
Hello Dear Ari, I hope you’re doing a little better each day. My mom and I are praying so hard for your recovery. You are the definition of BRAVERY, COURAGE & PERSEVERANCE. Lost of love from the Philippines. 🙂
Sending prayers, healing thoughts and hope to Ari and your family…with much love from our very fortunate transplant family.
Praying for him. God’s healing hand are on him. We await more news. He is a precious boy. God bless you.
Continuing to prayer for sweet Ari and your whole family. Prayers for healing, strength, wisdom, and courage in the face of all these challenges, with the knowledge and assurance that God loves you and is with you every single moment. May He give rest to the weary and renew you all.
Keep on fighting Ari!! You continue to be in our prayers. We love you and know you can do this. Sending strength and love ❤️ to you and your whole family💕💕💕💕💕
Keep on praying beside Ari please it really work I do that when my son is very sick! God will heal Ari in the name of Jesus🙏🙏🙏 God guide his doctors…hope his heart ❤️ will cooperate. His liver,kidneys will also always remember Ari even im at work I know God will protect heal him. So happy to see his pictures keep fighting Ari sending prayers here from 🇵🇭
Praying for you sweet and beautiful angel. You are so strong and will get through this. You have touched my heart so much with how immensely brave you are. ❤️❤️❤️❤️❤️❤️
I have been following Ari since the beginning. He is such a fighter and such a sweet boy. Your family has been through so much and you are in my prayers everyday. Thanks so much for the updates as I check everyday for one. 🙏🙏🙏🙏🙏🙏 I have been sharing his updates on my Facebook page. He’s getting many prayers from the west coast. Keep fighting Ari. ❤️
Kathy, there are no words, only prayers.
Saying prayers for Ari. He has really touched my heart. Such a strong and brave boy! I know God is watching over all of you. I will continue to pray for your family and that sweet boy of yours.
We had opening day at AVLL last weekend…..we all spent some time thinking about Ari and how much we all look forward to seeing him out there next Spring! So yes, all of the AVLL is rooting for Ari too!
Thank you for the up-date. Sending our prayers and thoughts from Belgium to Ari and all of you for strength and recovery from yet another hurdle. Looking forward to reading his biography in 20 years, so keep on swimming! The world needs you!
I have been keeping track on ari since day one, and im so glad for your posting. I’m for wells and know linda and Marvin . I just want you to know that i pray everyday for Ari and you as a family. God bless you all.
I am amazed of your kindness to keep us updated. You are amazing parents. I’ve told you how much Ari has blessed me with his beautiful smile, amazing heart and love for you and life. I know God is there with him, He loves your boy and your family and watches over this whole situation. Keep praying!
Sending prayers for Ari and his family. He’s a battler and let’s hope this rest sees his fluid retention going down quickly and his precious heart recovering.
xx from a heart mom in NZxx
Continuing to pray for Ari, Erica & Mike and your families. You have all been so strong for so long. Peace and love to you all.
“Where there is great love, there are always miracles.” Hang tough, little Ari! You have SO many people rooting for you and your family. Sending lots of prayers your way!!
Keep fighting Ari!!! Mike and Erica, continuing to think of you and praying for your family, good health, and happier days ahead.
Prayers for all 💕
Just being the wonderful people you are, sharing your story, and fighting the good fight is paying it forward sufficiently. Rest as you can, for as you are well aware, it’s a long battle. Many prayers are headed your way.
Peace and love and prayers for healing.
I’ve been following your posts for weeks, and hope you know how many folks you’ve never met are pulling for Ari and your family. Sending daily prayers.
Sending prayers your way. Blessings to you all.
Continuing to send love, positive thoughts and prayers to you all. We asked our Lord to allow Ari’s little body to accept his new heart. ❤❤
Thank you for your continued updates. Ari is a remarkable young child from a truly remarkable family. You all remain in our hearts on our minds and in the prayers of thousands.Claire and Bob
God bless baby Ari and family. You will always be in our prayers. Get well baby. Fighting little champ 💪💪💪💪 Love from the Philippines ❤
Always thinking of you and Ari and hoping this little rest does the trick.. Praying for another miracle. Get your rest while he rests. Its the only way to stay ahead.
I’ve been following Ari’s story for a while (a friend has a child that Ari has been in the hospital with). I teach Pathophysiology at the high school level and my kids wait to get updates on how he’s doing. I know that you all have at least a small idea of how many people are rooting for you all. Ari has been a huge inspiration as have you all as a family. Postive thoughts, healing vibes, and overall wishes for continued strength and healing to you all.
You don’t need to pay forward anything. Praying!! Always thinking of you.
I check every day, some days multiple times, to see an update on you Ari. You are getting top notch care at Children’s and there isn’t enough praise in the world to thank them. Rest Ari, get strong…miracles do happen.
Dear Ari and family, as you know you have so many kind loving and generous people pulling for you, you can do this, yes you can, you will!!!!! God loves you all so much and he is standing right by your side, please know you are loved and being prayed for, you are strong a great warrior!!!!!! Fight Ari!!!!
Continued prayers for comfort, strength, patience, acceptance and God’s blessings and grace.
Love you, my friend. So many people you have never even met are pulling for you.
Mike and Erica, I’m praying for Ari and sending positive thoughts. You are all in my thoughts. Xx
Thinking of Ari and hoping he makes progress in the right direction. Sending big hugs to the whole family …
Hope Ari is doing better we were at the ballfield watching our 5 grandchildren play ball stood in the middle couldn’t help thinking of Ari and how someday you will be watching Ari Hit a ball for a home run and how proud you will be we hope this for you we will continue to pray for Ari and your family lots of hope and love always in our hearts❤️❤️
Praying for Ari…please God, strengthen Ari and heal his body…enable his new heart to be fully accepted by his young body and allow him to live a rich full life full of love and joy.
I pray for the medical team…please guide each one of them and give them the mental acumen and wisdom to make good decisions regarding Aries health.
I pray for his dear family…give them peace and strength. Touch them in a special way that will let them know you are with them, giving them wisdom and peace with every decision they face.
We know you are a loving God and wants what is best for your children. Thank you dear Jesus for answering this prayer.
In your precious name I pray…amen.
Mike and Erica; we follow your journey from Langley, B.C. Canada and can only offer you our love and prayers. Know that your family is in our thoughts and how much we appreciate your sharing Ari’s battle. He is a fighter without a doubt. This little warrior can, has and will continue to climb mountains. Love to you all; Miles and Kathie
Ari you are a fighter, I’ll give you that! We,here in Massachusetts are pulling for you. Parents you are so strong …our thoughts and prayers are with you, Ari and your family.
Keep fighting little warrior. Everyone is routing for you and sending love and prayers to you and your amazing family. 🙏🏻🙏🏻🙏🏻❤️❤️❤️ I don’t know you or your family but I love you all. I will be at Yoga Reaches out tomorrow sending you positivity ALL day long. Huge higs to you all!
I am praying everyday for your sweet sweet son♡♡♡ Thank you for the update…as difficult as it was to read:(
Ari is a fighter like no other! He is without a doubt an amazing little guy! I pray for Ari and the rest of you guys on a daily basis!
We are praying as hard and often as possible. Come on, Ari, you owe me a chance to score a goal in knee hockey and we all need to make a Red Sox game together, both families. Love to each and every one of you…….
Dearest Ari and Family- Sam and I are sending positive, healing vibes from Wellfleet ❤
Prayers and positive thoughts for sweet Ari and all of you!!!
Erica and Mike stay strong and we’ll all keep praying for your little guy all the time ….Power in prayers … Love and strength to all of you ….
We continue to pray for strength, acceptance for Ari and his family ! God Bless all ! We are with you !