Max Mancini’s HLHS Journey

10/09/2025

Hi all! This year, we are participating in the Tulsa CHD Heart Walk on Saturday, October 18th! I'm asking you to consider joining us in the one-mile walk or sponsoring us with a donation. Our goal is to reach $2000 by 10/18! We are TEAM MIGHTY MAX!
Check out our team page and let me know if you have any questions! And thank you so much for all of your support!

Placing Children at the Heart of Research

02/26/2025

Big Max update!! We finally went to see his wonderful cardiologist and team in OKC today for the first time in eight months - the longest we’ve gone so far. His heart function looks normal, glory, hallelujah! They feel iffy about his (lack of) weight gain but understand that he is at the prime picky-eating stage and we’ll keep working closely with his dietician to come up with some ideas. We’re going to drop his lung function med (tadalafil), see how he does, and we’ll go back in four months to do a repeat echo after he’s been off of it for a bit. The thought is that he doesn’t actually have pulmonary hypertension and his high lung pressures before his last surgery were caused by collaterals (compensatory vessels the heart grows when it’s compromised). So the tadalafil can actually make things worse in the long run if that’s the case. The rough plan is to do his sedated MRI and pre-Fontan cath in January of next year, and most likely the third and final open heart surgery, the Fontan, by summer of ‘26! AND this summer we’ll likely get to remove the g-tube AND he got the go-ahead for school and travel! We just are beaming with excitement for him and we’re so grateful. Words really can’t express it, or the sense of relief after such a good report. He really hates appointments, and we were finally able to calm him down for the echo with the help of some dad snuggles and a video call with Grandad. Our cardiologist, Dr. House, was able to get a fist-bump from him in the end, so all is well. We made sure to visit our team up in the CVICU and brought them a new Max calendar for their break room. He has a serious fan club up there and he didn’t know what to make of it, but he did soak it up. On our way out, we happened to bump into our brother-in-law’s brother (Brent’s brother) Kyle! He works there occasionally, so it wasn’t too random but it was a nice surprise! Max took to him very quickly, probably because he loves Uncle Brent and he could probably sense the familial similarities 🥰
All in all, a fantastic report, especially after the recent RSV/pneumonia nightmare. So so grateful.

02/17/2025

Thank you all for checking in and praying. Max had a good day and his appetite is improving! Here he is with his absolute favorite - sourdough toast with butter. He hasn’t had a fever in about 48 hours and his energy is pretty much back to normal albeit for some longer naps today and yesterday, which is the best medicine of course of course. We’re prepping for the snowpocolypse and can’t wait to spend more days on end indoors 😑 I will say that Minerva has become an absolute SHARK at Uno Junior. It’s actually mildly infuriating when she gets us on that last card rule every. dang. time. But also
Again, thank you everyone. I kind of want to forget that whole RSV chapter entirely. Stay healthy out there!

02/15/2025

It’s been touch and go over here. We’ve been in very close communication with our doctors and have stayed home to avoid any other bugs which are all over the hospital. We saw the pediatrician this morning and did a repeat xray and viral test - he has RSV and pneumonia. We had a scary moment when got home, and I got oxygen on him promptly and he recovered. His fever had spiked and it seems like when the Motrin wears off he dips. We gave him the antibiotics and some more Motrin and he’s stable for now. We still may have to take him in for fluids. RSV usually is the worst on days 3-5 and this is day 5, so we’re praying that this is the peak and things will be better soon. Please pray for Max. Happy Valentine’s Day and CHD Day from the trenches ❤️‍🩹❤️‍🩹❤️‍🩹

01/05/2025

MAX IS TWO YEARS OLD! He’s a walking, talking, eating machine and we are all just smitten by him! Happy Birthday, our precious, precious boy!!

07/17/2024

I’m so pleased to report that Max had his cardiology appointment yesterday and he is doing great! They don’t need to see us again for another six months. He’s gaining weight, learning new words every day, eating by mouth, taking fluids by mouth, and yesterday he stood on his own for a good 3-4 seconds. His personality is blossoming and we couldn’t be happier with his progression. Plus he’s just too darn cute.

06/13/2024

Max is back! The rash is gone, and he’s doing so much better. We saw his pediatrician yesterday and she said he looked really well. And she thinks it was Fifth’s disease too. His appetite for solids is still a little decreased but I have faith he’ll bounce back. He’s saying so many new words and is starting to try to sing songs and seems stronger on his feet. I predict he’ll be walking on his own before the end of summer. Thank you all for your prayers. It was a stressful, scary weekend but we avoided the hospital and he’s bouncing back, thank God!