Hold the Line

After 66 days in CICU, Ari transferred back to the floor yesterday. We’re still day to day in that at any time something can go haywire, but for now, we’re chillin’ on 8 East.

It’s just Ari and me here this weekend as everyone else is up in Maine. He just fell asleep after way too many Star Wars books, so I don’t have the usual window to wax philosophic about things.

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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.

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Rest for the Weary

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.

Give to the Schultz family here online to help with medical expenses and to rebuild their home they lost to toxic mold. Unlike other crowdfunding sites, Youcaring does not collect a fee. Prefer to mail a donation? Make out to Erica and Michael Schultz. Mail to: Linda Stritch, P.O. Box 1567, Wells, ME 04090.

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The point of this post is to ask you to go here https://echoofhope.org/100klives/ and help out. If you do this but don’t read the rest of the post I’ll be sad, but I’ll get over it.

When millions of people saw Ari’s video as it went viral the day of his transplant we were immediately flooded with media inquiries. For two reasons we still have not spoken to any press yet. First, we were (and are) focused on Ari. Second, we are sensitive to the fact that a family had lost a child, and yet, during a time of immense grief, chose to give the gift of life.

We didn’t feel comfortable speaking with anyone.

In the few minutes we talked to each other about it, we asked ourselves, “If we have 15 minutes of fame, what do we want to do with it?” We didn’t have an answer.

We do now.

We are going to try to save 100,000 lives.

And when I say we, I mean you! We need help from all of you. Keep reading to find out how.

Give to the Schultz family here online to help with medical expenses and to rebuild their home they lost to toxic mold. Unlike other crowdfunding sites, Youcaring does not collect a fee. Prefer to mail a donation? Make out to Erica and Michael Schultz. Mail to: Linda Stritch, P.O. Box 1567, Wells, ME 04090.

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We post this picture of Ari to raise awareness for the need for people to register as organ donors during #DonateLifeMonth. Approximately 300 pediatric heart transplants are performed each year. Too many children don’t survive the wait. Register here: #DonateLife.

Earlier this week Ari’s blood pressure was regularly bottoming out. By 10 a.m. Tuesday his systolic pressure had dipped into the 30s. I told Erica on the phone. She said, “Is this it? Should I rush in?”

Ari was struggling mightily. So much so the doctors had the conversation with us about how Ari wouldn’t survive CPR and ECMO again. Those are off the table. He needs to keep it together. Last of the 9 lives. Gunfight at the O.K. Corral.

Then, as he has done so often in his short life, he dug in and attacked, pressing the enemy with great fury and relentless determination.


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Loss for Words

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.

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Since the beginning, we’ve told Ari we don’t know how long we’ll be at Boston Children’s Hospital. Late last week he was looking pretty good. I was feeling pretty bold. Started talking about home.

I said to him, “I think it’ll be nice out when we go home. What do you want to do?” Answer: baseball…and golf! He’s the only 4-year-old that I know that has played 18 holes at a championship course while in congestive heart failure.

Ari golfing at Ari’s Tournament to benefit the Ethan M. Lindberg Foundation. Backpack delivers IV medication.

I can’t stop thinking about how much I want him to come home. How much I want to play golf with him.

Unfortunately, we have been hit with very bad news on two fronts:

  • Ari is being treated for acute rejection
  • We learned on Friday we have to tear our house down and build a new one from scratch

Ari is struggling mightily. He went downhill and needed operations and procedures every day this week. On the day of procedures kids can’t eat. Ari had his food and water taken away every day.

The pokes and sticks were relentless. The rejection treatment, which takes a while, is horribly uncomfortable.

Home just got a little further away. For all of us.

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