Great googly moogly…let’s not do that again!
Look, I know just because I am who I am you all think I’m like some crazy-ass superhero who can take anything, but this open heart surgery thing is getting old. I mean, I’d like to get home before I qualify for an AARP card.
In the meantime, here’s quick update on some important doings. Still living in the cardiac intensive care unit here at Boston Children’s Hospital. I’ve been here now for about 80% of my life. A really long time, right?!?
To honor me, or something like that, I was interviewed by the Boston Children’s Hospital blog, Thriving. Nifty stuff.
Here’s a sample:
Ari, how’s life been treating you these days?
Well, you might say after two heart surgeries before birth, two balloon catheters shortly thereafter, and a major open-heart surgery at 12 weeks old that it’s been a bit of a grind. But you play the cards you’re dealt. Win the boobie prize? Make breast milk. That’s what I say.
You’ll also find my answer to the question, “Michael Jackson had the world in silver gloves. Madonna in ripped fishnets. Superman in blue Underoos. How will you have the world to emulate you?”
It’s all pretty cool. I hope you read it. If you do, I have a request for you: share your thoughts by making a comment directly on the Children’s blog. And feel free to share it through Facebook, Twitter, smoke signals, Goodyear blimp…you know, the usual places. After all, Ashton’s not the only one with an online following to keep up.
Worth noting, they interviewed me before I had the mitral valve replacement. Which, if you haven’t seen, is wild.
Since the last update, I’ve been surprisingly unlike me: practically no curve balls. Except for one brief pulmonary hypertensive crisis, I’ve fairly much stayed away from life threatening shenanigans. (Well, it was hot last week so I snuck out to South America for a quick ski run. Don’t tell anyone.)
A few days ago I got my breathing tube out. Now I’m on BiPAP. Assuming all goes well, I’ll be on CPAP or a high flow oxygen cannula shortly. My feeds are now up to 4 ml per hour. Better call Jenny Craig.
Pretty soon I’ll have more volume and then probably more calories, too. Once I get off breathing support, I can hit the bottle. Until then, they have to puree my buffalo wings and put them through the tube.
In other news, I’m no longer a Versed or morphine addict! I am, however, an Ativan, methadone, and dexmedetomadine addict. I’m serious about quitting this time, though. I’ll be cutting back over the coming weeks one by one. They say I gotta go to rehab…
In any case, hopefully someday, soon they’ll move me from the “unit” to the “floor.” For now, it’s one day at a time here in CICU.
Later peoples.
P.S. It’s hard not to like me, but now you and all your friends can like me on Facebook: http://www.facebook.com/dangerschultz.
P.P.S. Thanks to the super groovy Babson College MBA students in dad’s Services Marketing class for making the Emmy Award winning Here Comes the Sun video for me. You guys rock the party that rocks the party.
Echo of Hope 
[…] images and told her he doesn’t believe it’s cardiac related. You’ve all seen pictures of his new mitral valve. It’s big and weird and wacky, so it doesn’t read like native valve on echo. And, again, it was […]
as the song says, “here comes the sun”, all I see is a ray of sun shine on that beautiful little face with the BIG EYES and the greatest of love to you and Mike.
LOVE Aunti Di. xxxooo
The sunshine is in that smile!
Ari, We are incredibly proud of you. This news feels SO good.
Rock on. Next stop, across the floor to the step down unit. I hear their are hot nurses there. 🙂
Love, Alysann & Al
Alysann & Al,
Thanks so much. His smile really does light up the room. Melts my heart every time I see it.
Erica
Keeping the faith.
Thanks Greta. We appreciate all the support you’ve given.
Here comes the Sun, doo, doo, doo, doo
and I say it’s alright
Little Darling, the smiles returning to the faces,
Sun,Sun,Sun, here comes the sun
We’ve got this song cued up on rockband for you!
Ari’s smile is simply one of the most beautiful things I have ever seen! Best wishes to Ari and his amazing family!
Thanks Dawn. His smiles brighten our days.
Ari is the best! At what, you say?? EVERYTHING!!!! Funny faces, sarcastic faces, angelic faces, plus he has amazing writing skills, a tough heart, an unbreakable spirit…..He’s managed to make hundreds if not thousands of people that never even met him FALL IN LOVE with him….including me….
Thanks, Jeanne. It’s amazing how many people he’s touched. He’s a special little guy.
We are thrilled that you are doing so well. Keep up the good work, little guy, and get strong. You’ll be back home in no time.
Thanks, Lin!
Ari is as always, my hero. Keep on being the superhero giant you are Ari and know that the crazy cat lady from Hoboken loves you dearly.
Ari’s very excited to meet this crazy cat lady we’ve been telling him about and he can’t wait for his trip to Eatily.
Keeping the faith. Thinking about you often. Ari is the lion.
Thanks, Reiss’. Hope Talia’s doing well too!
Awesome! Great job mom and dad! Keep those good spirits flowing! Lots of love, the Penziner family!
Keep going little man! You’re doing an amazing job at holding on. Sounds like you have a great support system too. Best wishes for you and your family. 🙂
#Every one needs a super hero
Your blog is absolutely hilarious- which I need since I am expecting an HLHS girl in 5 weeks. We were diagnosed at 17 weeks and by then it was too late to have the in-utero intervention so off to BCH we went to find out about this strange new world of CHD. I have had a hard time keeping my sense of humor, since most of my senses have been replaced with sheer panic at times but your blog made me laugh out loud which doesn’t happen too often anymore! Thank you so much for this and perhaps we will see you on 8 at some point in our little one’s journeys. I never know what to say to another heart parent at Boston Childrens- hope to see you but I hope I don’t because if I do see you it means your child isn’t healthy…. Thanks again and I look forward to your posts!
I know exactly how you feel. Leading up to Ari’s birth was such an emotional time. I remember being so excited to finally get to meet him, but at the same time so scared because of all the uncertainty. I can’t tell you it gets better – the world of CHD is a roller coaster ride, but these kids are amazing. They are so strong and resilient and they are real fighters. Ari has touched so many and changed our outlook on life. Pretty powerful for someone who’s only been alive for 4 1/2 months. Hang in there and I’m glad our blog has provided you some humor. Through it all you still need to laugh – it’s the only way you can get through it.
LOVE LOVE LOVE the good news. Love the video too. How awesome will it be to play on his 15th b-day and embarrass the hell out of him in front of all his friends. Lovin you, rooting for you and prayin for you Ari (Mom, Dad and Grammie too) from SC. J dub says get better so maybe you can come down here and go to Hilton Head beach with us in Oct. It’s still nice down here then so y’all can hit the beach and show off for the ladies. I think you will be great wingmen for each other 🙂
Thanks, Terisa! Ari and J dub will be quit the lady killers.