The last couple of weeks have been a seesaw battle. Doing well one day and not so well the next, but it seems I’ve crossed the hump from professional to recreational convalescent.
They sent me packin’.
It’s been a long road, gettin’ from there to here. But here we are indeed, giving up our “apartment” in the city for our house on the lake. Time to 5,000 it and unlax on the dock.
My heart looks pretty good, okay enough that I should be able to grow and thrive. That’s the thinking, anyway. Here’s hoping all the cow valves, duct tape, WD-40, and a little luck keep my wonky ticker together for long enough that I can gain weight and get some semi-permanent fixes.
The majority of my recent problems have to do with my long history of drug use. I used to be a heroine addict, now I’m a methadone addict. I’m also an Ativan and Clonidine addict, with most of the trouble coming from my unsuccessful attempt to wean off of Ativan.
When I need my hit, my taste, my sugar, I get very very upset. Take upset, turbo charge it, power it with dilithium crystals, spin up the FTL drives, give it a flux capacitor, and mix it all up in a blender and you get Ativan withdrawal. Screaming for hours and hours. Shakes. Vomiting. Diarrhea. Tachycardia. Loss of appetite. Pain all over. Inability to sleep.
It’s a joy.
When I finally get my regular dose, or an early “rescue dose,” I settle out and get back to flashing the usual smiles. The weans are going to take a long, long time.
Meanwhile, I’ve had some normal baby problems too, like oral thrush, which makes my throat hurt and pushes me even further off the bottle. So most of the food has been going through the tube. The hope is that when we get over the withdrawal humps and my throat clears up that I’ll eat more from the bottle.
Until then, the tube stays.
Assuming things are smooth and I get the “all clear,” in a few weeks or so we’ll have an open house here in Stow when you can all come and visit. Will keep you posted on any gatherings here on the blog, and will update periodically on general progress as well.
Before we call it a day, however, here’s some fun with me, by the numbers.
90: Days this hospital admission
126: Total days admitted since birth
166: My age in days
76%: Percent of my life living in the hospital
2: Heart catheter procedures this admission
4: Heart catheter procedures since birth
6: Heart catheter procedures since conception
2: Open heart surgeries this admission
90%: Percent of my left ventricle initially covered in scar tissue, now mostly removed
3 of 4: Valves in my heart moved or replaced
1: Replacement valve from cadaver
1: Replacement valve from cow
Unknown: How long they will last (some measure of months to years)
Unknown: Number of times these valves will need to be replaced over my life
50% or greater: “Percent systemic” blood pressure that would indicate I’d have problems with pulmonary hypertension
100%: My percent systemic when admitted
45%: My percent systemic now
9 lbs. 5.21 oz.: My weight when admitted 3 months ago
8 lbs. 5 oz.: My lowest weight this admission after surgery #2
10 lbs. 0.5 oz.: My weight now
320 grams: Total weight gain during admission
3.5 grams: Average weight gain per day during admission
20 to 30 grams: Average weight gain per day healthy baby
Does not compute: Where I fall on typical baby growth chart
82: Nurses assigned to cover me in 8 East and 8 South not including surgeries, clinic, x ray, cath lab, resource nurses, clinical assistants, etc.
29: Medications given to me this admission not including cath and surgery procedures
13: Medications I’m coming home with
1: Medications my cardiologist would like to see me on in a year or two (Aspirin)
4,145: Current Facebook Likes for my guest post on Children’s Hospital Blog
7: Hours it took my post to become the most popular piece of online content ever published by Children’s Hospital
12: Hours the Children’s blog was down after it crashed due to heavy traffic
49,658: Page views on www.echoofhope.org since October 2011
52: Countries of origin of www.echoofhope.org visitors in the last 90 days
467: Likes on my Facebook fan page www.facebook.com/dangerschultz since setting it up earlier this month
$1,303,593.62: Current medical bill since birth, not including fetal interventions and last three weeks of hospital stay.
Most of it: Medical bill paid by insurance
Countless: Words of support, encouragement, and love sent to the ‘rents and me in the last year
Immeasurable: Our gratitude
4 to 6 months: Plan to re-admit to Children’s to balloon my Melody valve
15: Minutes home so far…
Later peoples!
Echo of Hope 
[…] last by the numbers was August 1, 2012 when I got home. Almost exactly 1 year ago. Now, you might remember, I went in for a clinic visit […]
Ari, I am so happy to hear that you are finally outta there! That is such great news, little guy! Listen, I went home on 16 medications and it took months to wean me off the methadone. I eventually got off the meth, am down to 3 meds a day and I needed the feeding tube for less than a year. The road ahead may be a little rocky, but “this too shall pass.” If you are ever in the thick of things and just need to talk to someone who’s been there, have your mom or dad contact my mom or dad through facebook.com/awishforwyatt. Cheers! ~Wyatt Tomasino
Ari, so glad that you are home enjoying some home time. I know that with God’s help things will only get better. Take time to smell the roses….agent 007! 🙂
So glad Ari that you are home and enjoying home life. I’m sure with God’s help that things will only get better from here.
My good friends, Sigalle and Mike Reiss, pointed me to Ari’s page. What an amazing little guy and amazing family. Me and my boys (Tom – husband but still a boy I’d say and Nate – 1 and Caeden 3) will be including you all in our nightly prayers and staying update on your progress Ari. Much love.
Hurray for the Schultz family!
“Before you go to sleep
Say a little prayer
Every day in every way It’s getting better and better.
Beautiful, Beautiful, Beautiful,
Beautiful boy”
(thanks John Lennon)
Sooooo happy that you are home, Ari!!!! Congratulations!
YAY!!!! Ari and the ‘rents get to enjoy the lake in the summer! Soak up the sunshine and enjoy the summer breezes….you deserve it! Good work Ari!!! Don’t worry…most adults have a tough time getting off those benzos…you’re not alone..lol……keep smiling, take your meds, and be good to Mommy and Daddy…and gain some weight while you’re at it…..loves and kisses…mwaaaa!!!
Best blog ever. Except I feel weird when I laugh (snort) and cry at the same time. And I do that throughout every blog entry here 🙂
My son David was also a frequent flyer in the CICU and 8East his first few years, and your posts bring back SO MANY memories. He’s 8 years old now and finally (just last year) made it onto a growth chart (1st percentile, but he is ON THE CHART), and is down to just one med – that aspirin you mentioned. 😉 And these days we spend more time at home than we do inpatient – haven’t had a surgery since 2009. Ari will get there too. It’s a long journey, but worth every step. These kids are such rockstars.
Sending Ari all our best wishes for some relaxing time at HOME!
Ari, I am just loving your good news!!!! Eat lots and work on that drug addiction problem…LOL And PLEASE keep us up-to-date on your progress!!! Love you bunches!!!! Dad needs to post pics of you at home often cause your smiling face always makes my day!!!
So happy to hear that you have traded the beeping busyness of your other “home” for the peacefulness of the lake. Good luck taming the drug demons – stay strong little man and your awesome parents.
Starting my vacation with tears of joy for Ari’s homecoming. Congratulations! I told my 4 year old son, Thomas, and he said he is glad that God heard him pray for Ari to go home. Yep, it’s all about him. 🙂
Hope the withdrawal gets easier. Hugs!
Looking forward to seeing you at the Lake.
All our best wishes and prayers.
Ed & brenda
Welcome home sweet family. Welcome home.
Yay!!! LOVE this news! It is so good to hear that the three of you have turned the page on that 90-day long chapter (“Second Admissions”). May this next part of the story (“Bulking up by the lake”) be filled with many many good things for you all!!
Ari, you touch my heart.
So happy to read this great news! Looking forward to reading more of your achievements I truly enjoy them. Enjoy being home all together what a wonderful day!
YEAH!!!!!!! Congrats. We are so happy! My heart is so happy. We are jumping up and down. We know what an amazing accomplishment this is! Way to go precious boy. Keep smiling! Sending hug and kisses.
Now that you are home and “chillin”, don’t forget to keep your blog going. It makes my day. Keep getting strong!
Still the toughest guy I know!!
Good luck to you all.
PS – I wonder how many people go the Annie Hall reference.
our little Ari: you have brought out so much love in people, I want you and my grandchild to grow up together ( you willl be 10 months apart) as your mother and my daughter did and all the other cousins did within months of each other. My heart burst with join that you are home and come August 8th we’ll be able to tell you what gender your cousin is!!!!!!!! much love to my very strong Erica and Mike, you have truely shown the the meaning of parenthood and the love of family. XXXOOOOO Aunti Di.
So glad you got to blow that hospital clambake, little Odysseus – so much
experience in so short a time!
Yay! Enjoy every minute!
I’m so happy they let you all bust out of that miraculous jail. Here’s hoping for a long spell of normalcy.
Welcome home little man!!!
I am over the moon that you guys got to leave the hospital and go home!!! Ari looks so amazing and I couldn’t be happier for all of you! Prayers from Houston will most definitely continue. God Bless you baby Ari – don’t ever stop smiling!!!!
Best news in a long time. Enjoy your well deserved parole, Ari! Love and hugs and oh yeah the ‘ole prayers,,too! xoxoxo
So glad to hear this great news! We all continue to root for him and you guys. Time to bulk up now, little guy.
Soooo happy you are home with your loving parents. I love you to pieces.
Yeeha, Ari!!!! I have a suprise for you, that Grammie Linda will have to bring down. I will mail it to her as soon as I receive it! Much love from all the horses in Maine 🙂
Tears and smiles ~ Welcome home to the Shultz family. Prayers and best wishes forever.
Absolutely LOVE LOVE LOVE this news!!!! Enjoy your new digs, Ari!!!
Crying tears of joy here in Atlanta for your good news! I’m just so happy for y’all! Enjoy your boy Schultzs-I know you will. Xoxo
So glad you’re all home. Tears here in Atlanta, joy for y’all and memories of Matthew for me. Oh my, tears running down my face. Off to get a tissue. Enjoy your boy Schults!
Congrats my friends! I’m so thankful that you’re home. Love, Kelly
Love to hear this news!! Welcome back home cutie!!!
what great news for you ari and mom and dad. keep up the good work and the fantastic attitude. you are loved by all that know your story- my daughter and i love boston children’s hospital and have spent time there as well. you are in wonderful hands. enjoy being at home- huggers to you 🙂 ❤
1 very estactic great aunt is sitting here crying her eyes out, so to speak. So happy for you all. Love and kisses
We just got here and now you’re leaving? Glad you can finally make the trip and I hope if we do ever get to meet you, the circumstances are better ones. Best wishes and looking forward to future blog posts!
I couldn’t be happier right now…lots of love xoxo
Stay strong little guy and enjoy the lake!
love it ARI!.. stay positive little man..stop having withdrawls! ur just a lil hunk! hehe ❤ ya!
Love this update and that Ari had 82 nurses mentioned in this post! So wonderful that you are all home.
Dear, sweet Ari – I can’t wipe the smile off my face. I’m so happy for you and your parents that you’re home. You are amazing!
Woohoo!!!! Alright Ari!
Most wonderful news. Ari is one special guy. He must get it from his parents.