BreAnn and John Tedesco had brought their son home on April 15, 2016, about two weeks after his Muskogee birth on April 4.
She called it "a totally normal pregnancy" without any signs of medical issues — until 20 minutes after the birth when she noticed JP's nails looked blue.
John, who is a physician, told her everything would be fine. A nurse took JP to check his vitals before people trickled out of the packed room and soon left John and BreAnn alone.
A nurse returned and told the Tedescos that JP needed to be flown by helicopter to a hospital in Tulsa. BreAnn feared for her newborn son's health as the parents followed the medical helicopter to Saint Francis Hospital.
They arrived and soon found out JP's condition was serious.
JP was born with transposition of the great arteries (TGA) — a rare heart defect in which the two main arteries are transposed. Instead of pumping oxygen-poor blood to the lungs and oxygen-rich blood to the body, JP's heart was doing the opposite — meaning he might not have enough oxygen circulating in his body to survive.
Doctors also diagnosed JP with mitral valve anomalies, septal defects (holes in the heart), subpulmonic stenosis with septal hypertrophy, bicuspid aortic valve, borderline hypoplastic left, and pulmonary hyptertension.
JP remained in stable condition for about three days before the Tedescos were sent to a hospital in St. Louis, where they spent about two weeks. The doctors there purposely made a hole in JP's heart to help with his blood flow.
From there, they went home for the first time, where BreAnn administered medications, checked vital stats and constantly feared the worst when he slept.
Normal oxygen saturation level is 95-100 % and anything under 90% is considered low. Mental function becomes impaired around 65% and loss of consciousness starts around 55%.
JP's level was at 85% during the first week back home while waiting to have a corrective operation. But it fell to 80% the next week, then 75% a week later.
"I visually could see my time ticking down on when we had to do this procedure," BreAnn said.
The Tedescos tried to figure out which hospital was best for JP, and at the time, BreAnn said, Boston Children's Hospital had done more arterial switches and mitral valve surgeries than other hospitals.
But the catch was, Boston was booked for months — "There's no way we can get this kid in in just a few months," the hospital said.
"JP really only had a couple months," BreAnn said. "Something had to be done quickly."
Boston Children's Hospital called weeks later to tell the Tedescos about a cancellation — and the spot was JP's if they got there in four days.
After packing and planning in just 30 hours, the Tedescos drove to Boston for what was supposed to be a six-hour surgery.
Doctors couldn't make his mitral valve out of JP's tissue like they had hoped, instead putting in a replacement valve, performing an arterial switch and fixing holes in the child's heart in a 10-hour procedure.
A nurse had told them the surgeon was on his way to talk to the Tedescos, but an hour passed and the nurse returned, telling them JP had had a heart attack and coded, and they had to reopen him.
After that, they left him open, putting a "silicone sheet" over his chest and put him in the ICU.
"It was a total breakdown for me," BreAnn said about JP's cardiac arrest and code.
He survived and had another open heart surgery a week later, and after that, he was put into a medically induced coma for four months.
Surrounded by "towers of medication," JP didn't look like himself, BreAnn said, and she was afraid for her son's life and wanted to just hold him.
"I don’t want to say I didn’t have a bond with him, but I’d never been able to hold him," BreAnn said. "... When we got to Boston, I didn’t touch him for four and a half months — I wasn’t allowed to.
"It was scary because I didn’t want to lose this person I hadn’t had a chance to meet yet."
John was BreAnn's rock in Boston, reassuring her that they chose the best of the best hospitals, but it still took awhile for her to get hardened to her new life.
To clear her mind and stay healthy herself, she went on a lot of walks in Boston, or Eva would come visit her brother, and BreAnn would take her to do fun things in Boston, like to art museums and parks.
When she was with JP, BreAnn would talk to him and read books to him. They always had music playing in JP's room, too — a lot of James Taylor and Steely Dan. His heart rate was relaxed while listening to James Taylor, BreAnn said.
The physicians initially predicted after JP's surgery that he would go home around Thanksgiving, but soon the physicians stopped giving a date and started saying they were taking it one week at a time.
"There was one point that I had my Amazon address switched to (the hospital housing) because I just had to start getting things from there because I wasn’t going to be home anytime soon," BreAnn said.
BreAnn asked herself every day if it would ever end.
"There was no end in sight at all," she said. "It was terrible — absolutely terrible."
JP needed a cardiac catheterization surgery (cath) to fix his valve that was damaged when he went into cardiac arrest, but the doctors and parents feared he wasn't strong enough, so JP was lying there motionless for months.
Finally, John and BreAnn decided to do the cath, and BreAnn said it was "like a lightbulb moment."
"When they fixed that valve and re-blew it up, everything started balancing — his color looked good, his fluids came off within 24 hours," BreAnn said. "It was amazing."
JP was getting better, but he was now battling a narcotics addition from being on his medications for so long.
BreAnn said his eyes couldn't really focus when he woke up, and because of the meds, his hair was "crunchy," and she wondered in fear if he would always be like this.
"I went with it. I didn’t have any other choice," BreAnn said. "Once I saw that he was really addicted — we were pretty aggressive with our ween because we knew he could handle it, but sometimes it take years for these kids to get off these medications."
BreAnn had gone back home to Muskogee now that JP was awake, and she was trying to get JP flown by helicopter back to Saint Francis so he could finish his recovery closer to home.
After being denied by insurance once already, BreAnn pleaded, and as she was about to leave Boston to go home again, she got a call telling her it was all approved — JP could go back to Tulsa to finish his recovery.
JP got better every day, weening off his medications after about six months.
"Every day, he’d do something else, or he’d start smiling or he’d give me eye contact," BreAnn said.
Finally, JP got to go home.
In the three years since, the family has driven their RV to Boston at least six times, BreAnn said. A cath usually keeps them there for a week, but if doctors find an issue requiring surgery, they could be there longer.
They stay with Boston because it is the only hospital that does the valve surgery the way they did, John said.
It's also so there's no confusion in JP's charts and numbers — meaning it's safer for the same hospital to examine JP every time.
JP is now on four medications with two conditions concerning his heart: one is the left side of his heart functions incorrectly because of a heart attack he had after his second open heart surgery, and the other is his mitral valve. JP currently has a Melody valve that John described as a "big stint with cow collagen sewn in to function as a valve." It can balloon up to 20 centimeters, and JP is at 18.
JP recently wore a Holter monitor, a device that measures and records heart activity, to determine whether he'll need a pacemaker during his next open heart surgery.
The family will travel to Boston in October to determine if he needs to have his valve changed and the pacemaker, but John and BreAnn hope he can last even one more month with his current valve so that he can grow stronger.
And stronger he grows — BreAnn said their household goes through six gallons of milk a week.
"Milk is definitely his chief source of nutrients, though," John said. "He’s big milk guy, and when he’s sick, often that’s all we can get into him for days on end."
BreAnn said mac and cheese is probably his favorite food, and she gives him bites of food throughout the entire day to keep his weight on him.
JP is not verbal yet because of the coma, John said, but he "gets his point across" and can clearly tell you his favorite color is blue and how old he is, and Eva and BreAnn sometimes hear him singing the "Paw Patrol" theme song.
Living in Kinkead Hills gives JP many chances to see one of his favorite animals — deer, which was also JP's first word.
After JP was home and stable, the couple decided to have another kid close in age to JP, so Antonio was born in September 2017. But after having one heart kid, the chances of having another one triples, John said.
Antonio, however, came out "perfectly normal," and the brothers are very close — sometimes even mistaken for twins.
"They’re very close. They are in the fighting stage, but you can tell they’re so sweet to each other," BreAnn said. "If JP drops his cup, Antonio will pick it up, and JP will hug him around the neck, and sometimes it’s a pretty serious hug, so it looks like choking, but they’re so sweet to each other."
The two act like normal brothers to their older sister by getting on her nerves, getting into her stuff and chasing her with toys.
"I love them, but they’re annoying," Eva said with an eye roll— a typical 8-year-old sister response.
The entire family is Steelers fans, even their 6-year-old Pomeranian named Mugsy, who has his own Steelers shirt to wear.
How big of fans are they?
"Big as it can get," Eva said.
Ironically, John said, JP's medical visits are in Patriots territory. He told a story of when Patriots players came to the hospital to say "hi" to all the kids, so the family hung up all the Steelers stuff they had with them and told the nurses to tell the players to "keep walking" past their door.
The family moved to McAlester about a year ago after John accepted a position at Southeast Clinic with McAlester Regional Health Center. There, he met physician Misty Branam, whose family became friends with the Tedescos.
Misty's family recently hosted a lemonade stand and silent auction to raise money for the Tedescos for their journeys to Boston and other medical expenses.
"We’ve just been really lucky," John said. "We’ve made a lot of really great friends here. It’s an awesome community with really friendly people, and that’s one of the reasons that we’re here in the first place. Everybody is just so welcoming."
Other friends have also helped out. John usually has to fly back from the trips to Boston for work, so during their last visit, a friend offered to fly up and drive the RV home with BreAnn so she wouldn't be alone with three kids, one fresh out of the hospital.
"I’ve had a lot of support and it’s been awesome here," BreAnn said. "And you don’t expect that when you’re new in town and you haven't had a lot of time to establish relationships, so … We’re very lucky."
They said they're in McAlester for the long-term.
"We have lots of options in John’s career, and this is what we chose, and we’re glad we made this decision," BreAnn said.
The Tedescos hope that in the future, JP will be healthy growing stronger each day. John said he hopes stem cell research will advance to someday give JP his own cells for a new valve.
John said he is trying to find a place that is doing stem cell mitral valves and seeing if JP is a candidate for a trial.
"Until then, it’s open heart surgeries to replaces the valves," BreAnn said, "which when you’re healthy — they’re always serious, and even (cardiac catheterization surgery) is serious, but you just do what you gotta do."
And that's the spirit they're teaching their kids.
"It is what it is," said Eva, who was called a "trooper" by her mom.
"Yep, it is what it is," BreAnn said back to her daughter. "We just gotta make the best out of it."