Archive for July, 2017

***Update #2: Just after 10 a.m. Ari coded in the emergency department. He had over a half an hour of CPR and has been placed on life support in the cardiac intensive care unit. Path forward unknown.***

***Update #1: Spoke too soon about looking ahead more than one day at a time. We called 911 at 4:19 a.m. as Ari was having a seizure. Very scary. At the hospital now. Something is going on. We don’t know what.***

On June 16 Ari came home.

We were all pretty excited (and us old people were also pretty nervous), but no one was more excited than Lexi. She got her hero back and was completely beside herself. I guess we all got our hero back.

Of course, it didn’t take long for them to be at each other’s throats. A few days ago she was jumping around and knocked over Ari’s water. As we all know, Ari is pretty attached to his water.

What would you guess his reaction was? Tantrum? Fight? Crying?

Ari looked at Lexi deadpan and said, “When they put the sorting hat on you, I’m confident you’ll be placed in Slytherin House.” (He wasn’t quite as diplomatic when she yanked him from behind by his nasal cannula tubing so she could get to the sink first to wash her hands. 15 yard penalty on Lexi for egregious face mask.)

Ari’s a special kid for sure. I’m so proud about how he’s grown up. Somehow he figured out how to develop and learn like an almost sorta normal 5 year old. I bet he’ll be reading sometime soon, retains everything we read to him from Harry Potter, currently in the middle of book 3. And I’m telling him the Lord of the Rings story at meal times in great detail and he loves it. We just met Strider in Bree. Exciting ride ahead of us!

He’s still on oxygen 24/7, which is limiting, but he’s adjusted pretty well. 23 medications now down to 22 (at the moment)! Some are rough on his stomach, but others are just rough. He’s on a high enough steroid dose to have moon face, not sleep great, have some possible pre-diabetes developing, and won’t grow.

He’ll have to be on 1/3 of his steroid dose to allow his bones to be able to expand. Right now he’s stuck off the height chart and not getting anywhere near it for quite some time. Maybe next year, but for now, he needs the steroids to keep the rejection at bay.

At the hospital 2x a week for clinic and infusions. He hates blood draws and IVs. One session took 6 pokes and 2 hours, but besides all this his quality of life is great. He gets absolutely exhausted in 10 minutes of heat, but if it’s on the cooler side he can play for quite some time.

Meanwhile, since he’s been home we’ve:

  • Been to the baseball field a few times. This is where he usually asks to go along with his basketball court in our back yard in Stow for hoops, golf, baseball, and swing set.
  • Enjoyed Lexi’s birthday. This was a big thing for Ari as he was asking for months if he would be home for Lexi’s birthday. He made it, and is psyched to be home for Eli’s on August 5.
  • Visited Grammie’s house in Maine. He loved lobster races and lobster eating, the beach, and mini-golf where he, of course, finished out the 18th with a hole in one.
  • Taken to the kids first music concert, a Grateful Dead tribute band. Fun times! Ari loves The Dead.
  • Had fun visits from the Assumption College baseball guys and coach. Lots of baseball and PS4. Ari fell asleep on one of the guys after a busy morning. After another visit, we promptly went inpatient (never mentioned that) for 24 hours of observation and infusions. Ari is not showing signs of improving, so the team wanted to have eyes on him. Not worse as far as we can tell, but not better.
  • Had a special visit to the U.S. Senior Open at Salem Country Club. Met last year’s winner Gene Sauers, met the great Tom Watson, and spent a good 30 minutes hanging out alone with one of his all-time favorites Hale Irwin. Hale was awesome with Ari, and they had quite the connection.
  • We also hung out last week at the site of our former house in Stow. The kids enjoyed watching the “dinosaur” chomp up the house. In typical sibling fashion they were fighting over whose room was eaten first. It’s officially a hole in the ground now. Bye bye house. We also got the official letter from the insurance company. Not one red cent. Ah, life.

And, perhaps the biggest news of all came in the form of a home visit by Christian Vasquez (catcher) and Xander Bogaerts (shortstop) of the Boston Red Sox! They stayed for two and a half hours playing baseball and flag football, and reading Ari stories in his room while Ari showed them all of his stuff. It was truly a magical day. Christian and Xander were very gracious and sweet with Ari.

Christian and Xander also told Ari that he’s been invited to throw out the first pitch at the August 27 Red Sox game! Will be another magical day. I have a feeling Stubhub will see a bit of a run on tickets in the next few days. We hope you can all come.

Two other pieces of news worth mentioning.

Ari Danger Schultz day in Stow will be on August 19. Noon to 7 p.m. in Stow. Click on the link for info and to RSVP. Should be lots of fun. Bouncy houses, multiple live bands, food trucks, breweries, wineries, raffles. And, most important of all (health permitting), Ari is planning to be there.

ESPN E:60 is planning to do a feature piece on Ari planned to air on September 3. They’ve been with us at the hospital and house filming, and will join us at Ari Danger Schultz day and at the Sox. Should be pretty cool.

Ari visits with golf legend Hale Irwin

As for our immediate future, Ari has a cath on Monday for a biopsy and to check pressures. We don’t expect new rejection on the biopsy, but who knows. As Ari hasn’t shown obvious signs of improvement cardiac-wise, we’re hopeful for even a glimpse that the pressures are getting better.

His last PVR – a measure of the pressure on his right heart and lungs – was 7. 7 is bad. This is why he needs oxygen, sildenafil, digoxin, amlodipine, lasix, diruil, spironolactone, and potassium chloride. All that and it’s still not enough. His heart needs to relax more, and recover more from his rejection and arrest. Time will tell.

Someone told me once that if you think too much about the future anxiety takes over. If you think too much about the past, you get depressed longing for the old days. We’re taking it one day at a time. Well, maybe we’re looking forward to throwing out the first pitch on August 27.

Why the hell not.

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