Echo of Hope

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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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:

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