Posted on May 18, 2017UPDATE - 5-18-2017
Mike updated his EchoOfHope blog with the following: ---- Parked in Cardiac Intensive Care ---
by Mike Schultz
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.
Because he’s been having trouble with disturbingly high heart rates, and his echo showing continuing issues, the team is searching for answers for what to do to help him. This morning Ari had a cath to get more data and get a new biopsy to see if the rejection is still holding off. The data showed he’s about the same. Still riding the line with pressures.
We won’t know about the biopsy until tomorrow, but nobody suspects active rejection right now as his immune system is completely shut off. One of the senior attending doctors told us, “Ari is the most immune compromised child I have ever cared for.” We are on pins and needles every day hoping he doesn’t get a cold. If he does, there is a good chance he wouldn’t be able to fight it off. Infections also add stress to his heart and body. Any new stresses to his heart could tip things in the wrong direction.
Meanwhile, Ari’s spirit amazes us every day. Yesterday he met two professional golfers who came by to visit. He was all excited, showing them videos of him on the golf course, and telling them he was “born with that swing.”
They asked Ari about the sports he liked. He rattled off the list, including football, telling them that he plays Madden on PS4. They told him Tom Brady was on the cover this year. Ari asked, “What about Jimmy Garoppolo?” They said, no, he hasn’t been on a cover. Ari responded, “Well, there’s always next year.”
He’s been playing Home Run Derby on MLB The Show on PS4, nailing home runs and doing play by play for each one. And of course he plays golf and baseball for physical therapy every day.
Link: Ari Playing MLB The Show on PS4
Even here in the most difficult of settings he is growing up and getting smarter. Pretty incredible given the tons of narcotics he’s still on. He asked a few days ago if we thought he’d be able to go home this year since, as he said, the year just started. He hasn’t really caught up to the fact that he lost two months of time after the arrest. He also wants to know when he can move back to 8 East because, when he’s there, he gets to leave the room sometimes.
He hasn’t left his room in 2 months. He gets to sit on the bed or the chair, and in between try to take a few steps before he gets exhausted, though yesterday he had 3 sessions playing hockey and baseball. He swung the bat pretty good for 5 minutes. Was funny watching him try to run tied to about 10 wires and 2,500 pounds of equipment. (I guess normal funny and CICU funny aren’t quite the same thing.)
Unfortunately, because we are not sure if he is getting better yet, we are parked in the CICU. Ari is on a ton of support that can only be given in an ICU. He hasn’t been able to wean off yet, though the last couple of days we made some snail’s pace progress. Will this last another few weeks? If he can wean off of nitric oxide this time (last time he failed) it could be. Month? Months? We have no idea. It all depends on whether his new heart can still recover enough from the damage sustained during the arrest and the rejection episode.
A few days ago we had the Red Sox game on. (And, at the same time, he had Red Sox highlights on the iPad. And he had me playing MLB on PS4.) He looked over at us and said, “There’s nothing better in the whole world than watching a Red Sox game with your family.”
Here’s hoping someday soon we’ll be able to do it right at Fenway with Ari, Lexi, and Eli.
P.S. We can’t thank everyone enough for all of the help and support. It’s hard for us here, but we realize it’s also hard for other people who depend on us and who are supporting us as the months wear on and on. Thank you doesn’t seem to cut it, but know that we mean it deeply.