Feeds:
Posts
Comments

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.

Fudōshin!

Continue Reading »

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.

Continue Reading »

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.

Continue Reading »

A New Hope

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:

Continue Reading »

For the Duration

Ari and Lexi

(Ari and Lexi)

On September 9, 1965 Commander James Bond Stockdale took off from the air carrier USS Oriskany in his A-4 Skyhawk jet and was shot down over North Vietnam. He remained a Viet Cong prisoner of war at the Hanoi Hilton until February 12, 1973.

During his seven and a half year imprisonment, he was regularly tortured and denied medical care. Four years into his captivity, he was shackled in a shower stall where he was subjected to incessant torture. When he was told that he and his fellow POWs were to be paraded in public for North Vietnamese propaganda, he slit his head with a razor and beat his face to a bloody pulp with stool so they could not use him.

Continue Reading »

From the time Ari realized there was a world around him he’s been obsessed with golf. Last year on a Saturday in April I took Ari to Stow Acres to putt for a bit. We did that for an hour, putting and chipping away. Then we split a large bucket of balls. Then lunch in the clubhouse. Ari’s friend Norm was there and gave us a cart to play a few holes.

This became our summer. All week we’d hear a steady chorus of “Is it Saturday yet?” Saturdays were for Stow Acres and golf.

A few months ago just before Ari turned 4 we went to Florida. As you might imagine, he was pretty excited for some golf. We went to The Dunes in Sanibel. Ari had a blast putting and chipping. He actually drew a gallery. I mean, he was still 3 and he’s not on the growth chart. Right on cue, hit 50 foot chip from 15 feet off the green that rolled right into the hole. Big enthusiastic golf clap from the gallery.

Continue Reading »

Hi folks. For those of you who haven’t heard already, Ari’s wish was approved by the Make a Wish Foundation. While saying ‘thank you’ doesn’t quite express the sentiment, here’s a video from Ari and us to share with you what he wished for, and to express our gratitude to the Make a Wish folks.

Inside is a special hat tip to Mike Gorman, the Celtics play-by-play announcer who has called the games for over 30 years with partner Tommy Heinson. Ari had the pleasure of meeting Mike last night, and Mike graciously signed Ari’s ball. Ari says, “Mike Gorman says ‘Got it!’ when the Celtics hit big shots!”

Also, for your viewing pleasure, here’s Ari at the house knocking down some shots just before he turned 3. Of course he hit 5 in a row before I pulled the camera out to see how long it would go. A few more calls of “Got it!” in here, too.

 

P.S. Ari’s doing well, enjoying pre-school, and still learning how to eat. Maybe someday he’ll get off the feeding tube, but we have to say, it’s helpful given he still has meds around the clock.

Cardiac status is still a question mark. Last echo in December didn’t show any improvement in his pulmonary hypertension. We have an echo and appointment with the transplant team this week. He’s not listed for a transplant right now, but they watch him closely.