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!

06/10/2024

Max has been sick with some mysterious thing since Thursday. It started with a low grade fever, grumpiness, then loss of appetite, then digestive issues…and that was scary because there were no other symptoms and we couldn’t pinpoint it. His heart rate and saturations have been fine for the most part. But Friday night he turned the bluest I’ve ever seen and his skin was more mottled than I’ve ever seen. It was terrifying. He was shivering and had chills. Nick was able to warm him up and then his fever spiked again. We’ve been treating it with fluids and Tylenol and that really seemed to help a lot until it would wear off. Yesterday he finally vomited, which made us relieved actually, because it was more of a clue pointing towards a stomach bug/virus.
The grumpiness, fatigue, and vomiting would come in waves, and in between the waves, he’d eat and play like there was hardly anything wrong.
Our team said that’s a great sign. He looked great last night and this morning but then he vomited again this afternoon and then a rash started to appear. He had a rosy cheek on Thursday morning before the fever. All this to say, my suspicion is Fifth’s disease (it’s a virus, also known as parvovirus (not the animal kind)), or also known as Slapped Cheek disease. We decided to take him into urgent care this afternoon. They did a strep test and an RPP, which tests for all the common viruses (parvovirus not included), and everything came back negative. And they said to just keep doing what we’re doing with the monitoring, fluids, and Tylenol.
We got home and he ate a big dinner, played outside, and crashed hard. We’ve been lucky to avoid the hospital, so let’s pray it remains that way and he recovers quickly.
This has been a rough weekend of lots of cancellations and hyper-vigilance for me and Nick. Please pray for some rest for us too, and Minerva. She’s such a trooper (and that breaks my heart sometimes). Love these babies, so much, it hurts.
Also, despite it all, this weekend Max has started saying “book”, “I did it!”, and the most adorable, “Paw Patrol”. 🥹

04/25/2024

We’re all HOME!
Max has been on room air since 4:30am and is bouncing back just fine. Still coughing a little, but nothing we can’t manage at home. His echo looked stable too. Minerva was excited to come to the hospital and help us get all packed up. They both were ecstatic to see each other. I tested again this morning and am still covid positive, but I’m feeling much better. Still expectorating (is that a word?) but I predict that to happen for a while to come. Max is crawling all over the house and pulling out all his toys. He’s very happy. We ordered burgers for dinner and pray for an uneventful night. Onwards and upwards! Thank you all for your prayers of healing! God is good, always.

04/24/2024

Max update // he’s much better. We were transferred to the floor and things were pretty hairy for the next few hours. We had to wrestle him to get an oxygen cannula on his face. Eventually, we had to put braces on his arms to prevent him from pulling it off. His sats were sitting in the low 70s (his normal is high 80s). He’s now down to .5L and they’ll try to keep weaning it. We had a couple of options for treatment: first is to try a steroid and NSAIDS to reduce the inflammation in his airways, if not that then a five day course of Remdesivir via IV. Obviously we chose the steroid, and we’ll see how that goes. The doctor said that this new strain of covid is really hitting kids hard this time and is causing croup-like symptoms and hospitalization even for non/medically complex kiddos. So take extra precautions right now, however that may look for you & your family. You don’t want this variant in your home.
Dr. House, Max’s cardiologist in OKC, wants them to do an echocardiogram tomorrow just to check in on his heart. Please pray that all looks “normal”.
So, here we stay for 1 to 2 more nights, providing nothing crazy happens.
He’s been resting a lot, enjoying bubbles, Ms. Rachel, and chewing on his beloved blanket.
Our priest, Father Kastl, visited us right away this morning and provided anointing for us both. It was truly a salve.
Minerva is hanging with granny and grandad but we’ll try to get her over here tomorrow, after she goes to the studio to paint and get donuts with Granny.
I’m sleeping at home tonight while Nick takes over for the night shift. I got a 1 hour nap in at home earlier but had to get back. Really looking forward to sleeping tonight.
I’m a little better. Finally had some big coughing spells and cleared some “crud”, as my mom calls it. If I’m still struggling tomorrow I’ll head to urgent care to beg for some prednisone. My doctor denied paxlovid for me because I don’t meet all the requirements.
I’m sure rest will do me a world of good.
Hospital life is really hard. Thank you for your continued prayers, everyone.

04/23/2024

At St. Francis hospital in Tulsa. Seems like covid finally hit Max hard. O2 saturation was lower than normal and has stridor. His chest xray looked fantastic and he only tested positive for covid. They gave him a steroid and now we’re waiting to be transferred to the floor to be admitted for the night for monitoring. He’s only now starting to fall asleep but he’s fighting it. So many noises. I’m going to have to visit urgent care myself tomorrow for hopefully some paxlovid because I’m not improving at all and am still testing positive.
Say prayers please that we recover quickly and can get back home and back to regular programming.

03/12/2024

Max had his cardiology appointment today. Great news: his heart function has improved! And it’s improved so much that it’s considered in the “normal” range now!! We are thrilled. He’s doing so well, and they don’t want to see us again for another four months! He still hasn’t really gained any weight, but they’re not concerned. We’ll chat with our dietitian soon about switching over fully to the toddler formula, and that should help. It was pretty amazing to see him playing around in the play area of the hospital where Minerva played so many times last year while he lived upstairs in the CVICU. He’s doing really great with his g-tube feeds and oral feeds and is even starting to tolerate some bolus feeds with the toddler formula (bolus is basically how a baby would normally drink a bottle in one sitting, but via the tube - meaning, it’s like 70mL 10 minutes, as opposed to a continuous feed of 70mLs per hour, if that makes sense). It’s basically one big step forward with his feeds and will help his stomach to know what it feels like to fill it more quickly and normally.
One of these pictures is him showing his cardiologist, Dr. House how he can take some steps. We love our cardiologist and she is very pleased with his progress. We are so proud of him and are so relieved to get such a good report. Praise God!