TeamEnzo

TeamEnzo Enzo has KDM6A Kabuki syndrome, a rare genetic disorder. We'll use this page for medical updates and cool things in the world of Enzo. 🙂

Monday funday update from Enzo! Levine Children's
08/19/2025

Monday funday update from Enzo! Levine Children's

Enzo got a visit from his sisters (and Abuela!) last night. And we took a lap around the floor. Little painful at bedtim...
08/18/2025

Enzo got a visit from his sisters (and Abuela!) last night. And we took a lap around the floor. Little painful at bedtime and waking up. But did great in the middle! Nonni and Poppop are coming to visit today 🤗🥰💚 Levine Children's Elias Jimenez Judy Bloom Pazzula Lorena Martinez

Enzo is out of ICU! Making all the right moves. 🙏🏼💚 Levine Children's
08/17/2025

Enzo is out of ICU! Making all the right moves. 🙏🏼💚 Levine Children's

Another update, because he's doing great! Enzo's really trying to leave the PICU asap! 🤣😍🙏🏼💚 Levine Children's
08/16/2025

Another update, because he's doing great! Enzo's really trying to leave the PICU asap! 🤣😍🙏🏼💚 Levine Children's

Saturday morning Enzo update from Levine Children's 🙏🏼💚
08/16/2025

Saturday morning Enzo update from Levine Children's 🙏🏼💚

It's been a busy afternoon. Spinal fusion is complete. So grateful for our docs and the care Enzo receives here. He is r...
08/15/2025

It's been a busy afternoon. Spinal fusion is complete. So grateful for our docs and the care Enzo receives here. He is resting in the PICU. What a champ. Still on oxygen, but they were able to extubate before coming up here. Lots of meds and IV lines. Hoping to shed some tomorrow. 🙏🏼

Enzo's having a total spinal fusion today to correct his scoliosis, improve/sustain lung function, reduce/prevent pain, ...
08/15/2025

Enzo's having a total spinal fusion today to correct his scoliosis, improve/sustain lung function, reduce/prevent pain, help with digestion, and over all improve quality of life. Timing for a big procedure like this depends on each child and their medical needs. His doc wanted Enzo to grow as much as possible, but once curvature reached a certain point it was time. Lots of prep for the last year + but here we are. He's so strong and God is good. I'm so grateful for his care team. Levine Children's

Quick Enzo update!We saw ID/immunology today. They have cleared him to return to school and therapy starting Monday. Yay...
11/15/2024

Quick Enzo update!
We saw ID/immunology today. They have cleared him to return to school and therapy starting Monday. Yay!
They still aren't 100% positive what caused the fevers (he's not had a spike since Tuesday🙏🏼). But they suggested getting bloodwork for a particular marker (procalcitonin) if he gets fever in the future that we don't have a clear answer for...and then if it's high we should head to the ER. Otherwise we will continue to follow up with our regular immunology doc (next appt in Dec).
It could just be his primary diagnosis of Kabuki syndrome and the abnormalities that go along with it that caused such a stir. I'd still like an answer, but we may never get one. God has a plan and I'm staying faithful. His will be done!
Levine Children's

Breaking news! Enzo is HOME! It happened earlier today but it has been extremely hectic. I cannot thank our friends and ...
11/07/2024

Breaking news! Enzo is HOME! It happened earlier today but it has been extremely hectic. I cannot thank our friends and family enough for the prayers and love and support you've shared with our family.
On the medical side, Enzo will have to stay home til we have some more answers. They ran a ton more tests these last 24-36 hours. And many are still pending. The fevers persisted. But since he was stable otherwise, I asked if we could take him home and treat the fever ourselves. We have pulse ox, oxygen, BP cuff, suction, etc. They didn't feel further IV antibiotics were going to help, so the doctors agreed and moved forward with the discharge. He will see the immunology team in the clinic in the next week or so (instead of his regular follow up which wasn't going to happen until late Dec). Hopefully by next week some of the tests will be back.
In the meantime, his sisters couldn't get enough of him this afternoon. We're so happy to have him back (and all of us in the house at the same time!).
We are so grateful for the doctors, nurses, techs, respiratory therapists, and phlebotomists that took such loving care of Enzo. And to all who have visited, cooked, washed clothes, chauffeured the girls, prayed from near and far, thank you for being our village.
# Levine Children's

Throwback baby Enzo stopping by to say he's still in the hospital. He had another fever this morning. Waiting to hear fr...
11/05/2024

Throwback baby Enzo stopping by to say he's still in the hospital. He had another fever this morning. Waiting to hear from immunology. They are rounding and will review all of the tests that have already been done and make a plan for what's next. Please pray for our pumpkin and his care team. We want him home😔 Levine Children's

No new big news today other than: look at this smile! Feel like Enzo's personality is finally returning. Made him get up...
11/03/2024

No new big news today other than: look at this smile! Feel like Enzo's personality is finally returning. Made him get up and get a bath...got him fresh sheets...etc. This is his last IV antibiotic dose. Whoohoo.
Little fever overnight but we're hoping it's still considered on the "down" curve. 🙏🏼
He's off contact precautions, so we're out for a walk. YAY! Fresh air!
Levine Children's

Enzo had a great afternoon and night! Today (Sat) he's done with amoxicillan. He will finish IV rocephin today/tomorrow....
11/02/2024

Enzo had a great afternoon and night! Today (Sat) he's done with amoxicillan. He will finish IV rocephin today/tomorrow. His fever stayed away all night so I asked if we could just do NSAIDs PRN to see how he does. So far so good. This AM he got a visit from his teacher, Mrs. Corrigan and Ms Amber his nurse. Nonni and Poppop are also visiting today to give me a little break.
The prayers are working, keep em coming! # Levine Children's

Address

1000 Blythe Blvd
Charlotte, NC
28203

Website

Alerts

Be the first to know and let us send you an email when TeamEnzo posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share