By Joel Warner
By Michael Roberts
By Alan Prendergast
By Michael Roberts
By Michael Roberts
By Amber Taufen
By Patricia Calhoun
By William Breathes
Traci couldn't follow everything that was going on, but she knew about ECMO, shorthand for extracorporeal membrane oxygenation technology. That would be like turning your child completely over to a machine; she had seen CHD babies go on the machine and never come off it. At the height of the crisis, a young resident came out to update Traci on what the doctors were doing, using the usual medical jargon. It was too much for Traci.
"I don't fucking understand a word you're saying, and my son is dying," she snapped. "So use words I get."
The resident blanched. "You're right," she said. "I'm sorry." She began to explain again, using plain English.
Traci texted the four lawyers she worked for, saying that she needed help. One was in a court hearing in Douglas County; she told the judge sorry, adios, gotta go. The other three were in meetings or depositions. All of them dropped what they were doing and came down to Children's to support her and Jackson.
The crisis ebbed, then surged back. Jackson was fighting a viral infection, a bacterial infection and a staph infection from the breathing tube. No quarter given; none sought. Samurais don't quit.
Traci spent long days at the hospital, saw Chris for fifteen minutes at dinner, collapsed while Chris rushed to take the evening shift at their son's bedside. Neither one of them had any family that lived locally, but friends and neighbors stepped up to help with Mason, with chores and meals, with a golf tournament to help with the mounting hospital bills, with getting through the emotional exhaustion.
"You really learn who your friends are," Traci says. "A lot of people say they will do everything they can because they think it's the right thing to say. They feel obligated to say it. But in our case, a lot of people actually meant it."
May 2: We were finally able to hold Jackson yesterday.... Jackson is addicted to the sedatives they have been giving him for the past week and a half, and they are working to wean him off of them. So he's on methadone. Man, that sucks to even admit out loud.
May 10: He was asleep when I got there today, so I just sat down in the chair with him tucked in my arms and he slept so peacefully. It was amazing therapy for us both. I stroked his head, and tried to cover the giant bald spot from the IV in his scalp. Adel [Younoszai] came by and asked how I was, and the only word that came to mind was "perfect," so that's what I said. Right then, in that very moment, I was perfect. Jackson was asleep, in my arms, not struggling to breathe, not blue from low sats, not crying from opiate withdrawals. He was just sleeping and I was just holding him. I'd call that pretty damn perfect.
June 12: And now for the update we've all been waiting for...JACKSON IS GOING HOME TODAY!! After 61 days here, 48 of them spent in the Cardiac ICU, and after nearly losing him two separate and very scary times, we are finally making a break for it.... We are so very blessed, so very fortunate, so very lucky.
On a rainy October afternoon, Traci takes Jackson to Children's for his weekly clinic appointment. Members of his medical team review his heart tests, oxygen levels, nutrition and much more. A nurse types information into a computer as Traci meticulously ticks off from memory the names and amounts of medications being administered to Jackson, from aspirin to antacid to diuretics to Sildenafil — a drug that helps reduce pulmonary hypertension but is better known to the adult population as Viagra.
Dr. Younoszai examines Jackson. He likes what he sees. The baby's complexion, while still mottled in places, is looking rosier all the time. Jackson grips the cardiologist's ID card, energetically drums his legs on the exam table, bats his long eyelashes.
"We've had our ups and downs," Younoszai says, "but he's looking phenomenal today."
"There were times when it was minute to minute," Traci says.
Younoszai smiles. "Now it's week to week," he says.
The minute-to-minute part didn't end with Jackson's two-month spiral of complications after the Glenn surgery. He was home only a couple of weeks before a series of additional hospital stays — a bout of pneumonia, followed by fluid retention in his lungs, followed by other crises involving aspiration and low sodium levels. During one low period in July, when the doctors felt particularly grim about his prospects, there was talk of undoing the Glenn and even contemplation of a heart transplant.
No additional open-heart surgeries have been performed, but Jackson has undergone a series of lesser procedures. Surgeons have twice used a heart catheter to tie off tiny blood vessels, known as collaterals, that tend to form when the pathways between lungs and heart are compromised; in effect, the body tries to create its own shunts to get more oxygen into the bloodstream. He's also had a Nissen, a technique for constricting the esophagus to make vomiting and gastric reflux more difficult, and surgery to remove bony tissue that was obstructing his nasal passages. The tissue is growing back, requiring at least one more surgery scheduled in a few weeks.