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"He's had some chronic issues that have been conspiring against him — his airways, aspiration, reflux," Younoszai says. "It doesn't have to affect the lungs directly, but it can cause this clamping down of the blood vessels, this restriction, and that can push back on this unnatural system we've given him. It's not just his CHARGE syndrome, but I think that's behind a lot of this."
At times Jackson's ordeals have come close to overwhelming Traci. She's felt helpless to relieve his suffering, guilty about putting him through all this, a complete failure as a parent. The long hospital stays have been hard on her marriage — "When he's not here, Traci and I seem to grow apart," Chris says — and hard on Mason, who must play second fiddle to his little brother's ongoing medical drama. But they've been particularly hard on Traci's estimation of herself as a mother and a member of the human race.
July 29: I am tired of the pokes and the cuts and the tests, that never lead to anything definitive. I am tired of not getting concrete answers. I am tired of handing my kid over so they can abuse him. I miss him. I am sucking as a mother to Mason. I am sucking as a wife. I am sucking as a mother to Jackson...I am just sucking all around.
She got to the point where she could no longer bear conversations with other parents about how poor little Jess or Josh got an owie or howled while getting vaccinated. "I realized one day that I had unfriended every single person I knew on Facebook that had healthy kids," she says. "I have a friend who's pregnant, and I've maybe asked twice about how it's going. It makes me feel like a jackass, but I can't make the words come out of my mouth."
Yet in the past few weeks, Traci and her son have been faring better. To the extent that any heart baby ever truly turns a corner in the labyrinth of medical crises surrounding CHD, Jackson seems to have turned one. It's been more than a month now since his last hospitalization, his longest stay at home since his Glenn surgery. The amount of supplemental oxygen he requires has been dialed down significantly; it's now being used more in a medicinal sense, to help keep blood vessels open wide rather than because he needs it to breathe.
"To be honest, there are a lot of kids who just don't make it," Younoszai says. "But the great thing about kids is they have this plasticity, this ability to adjust — and they heal so much better than adults do. They start flying on their own. Jackson is a bit different; with his genetic syndrome, we don't know what his complete potential is. You've just got to take it in small steps. But for him, week to week is great. I'm still hopeful that we're going to be talking year to year with him."
Despite his setbacks, Younoszai says Jackson has a "very good intellectual potential prognosis." Traci and Chris know that their son is far from out of the maze. He has a blood clot in his leg the doctors would like to see broken up, but not at the risk of some piece of it traveling to his heart and possibly his brain. He needs to more than double his weight and get much stronger before he's ready for the Fontan that will complete his trio of heart surgeries; the operation is typically done on CHD children between the ages of two and five years old.
Over the past twelve months, Jackson has racked up medical bills totaling well over two million dollars — most but not all of it paid by insurance and Medicaid. He's gone through opiate withdrawal, popped Viagra, brushed up against death and bounced back into his Johnny Jump Up. He now has a physical therapist, a speech therapist and even an occupational therapist, but his mother jokes that she's the one who needs therapy.
"He's very behind, developmentally," Traci notes. "He's spent five or six months of his life in the hospital. He doesn't roll over. He doesn't sit up. He doesn't make a lot of verbal noise. He doesn't eat with his mouth. But so what if he doesn't walk on his first birthday? The way I look at it, he's alive. I will take alive and not walking."
The past year has taught the Holbrooks plenty about the frontiers of medicine and its limitations. It's taught them how to be advocates for their son, and Traci doesn't hesitate when asked what advice she offers other heart moms: "Speak up for your child. Find what works for you, the doctors and nurses who are going to talk to you on your level. And stay the hell off the Internet. Google is not your friend. The information is outdated, it's wrong, it's scary."
But most of all, having Jackson has taught them about what matters. Most of the cases Traci deals with as a paralegal are family-court cases, epic struggles over who gets the children for Christmas and who gets to keep the good china — stuff that seems to fade into insignificance now. She can't get worked up over the small bumps in the road. Not after seeing kids fighting cancer at Children's. Not after attending the funeral of an eight-month-old, the son of a heart mom she'd met just a few months earlier. She will take alive for every precious moment it's offered.