Against the odds, 8 year old returns home

‘Though small for his age, Jacob “Jakey” Veronda, age 8, is a fighter, surviving challenges that would break most people.
The son of David and Holly Veronda of Coal City, Jakey finally went home last week after three months in Lurie’s Children’s Hospital in Chicago. His parent, as well as sisters, Katherine and Kaylee, are relieved that the trials and tribulations suffered are finally past.
The nightmare began last October when Jakey  was feeling out of sorts. No one knew what lay ahead, certainly not his mother, Holly.
“This whole thing started out with what we thought was an ear infection,” Veronda said. “His breathing was horrible. He was obviously not feeling well, so we took him to quick care here in Coal City.”
While many parents might not think of an ear ache as an emergency, Veronda knows a simple infection may literally take the life of her youngest child. Jakey was not only born prematurely, weighing only two pounds at birth, but has a condition that leaves him vulnerable.
“He has Kabuki Syndrome,” Veronda said. “It’s a rare genetic syndrome, a form of cerebral palsy.”
The start of a nightmare
Kabuki syndrome is  characterized by distinctive facial features (like arched eyebrows, long eyelids, and prominent ears), intellectual disability, developmental delays, skeletal issues heart defects, and a higher risk of infections.  It was Jakey’s risk of infection that compelled Veronda to rush him to urgent care.
“His oxygen stats were at 74, so he had to be life-lifted immediately to Lurie’s Children's Hospital,” Veronda said. “He was intubated from the day he got there, October 14.”
An oxygen level of 74 percent is critically low and requires immediate medical attention, as normal levels are 95-100 percent. The danger increases for someone with a weakened immune system.
Jakey was confined to a room in the ICU at Lurie’s Children's Hospital. For a child who’s not much larger than a toddler, Jakey has fought valiantly against   life-threatening bacterial and fungal infections, and antibiotic-resistant pneumonia. His tiny frame was wracked with pain, a ventilator breathing for him.
To complicate matters, at the same time Jakey was admitted to Lurie’s, Holly’s husband David Veronda was hospitalized in Naperville.
“My husband had knee surgery, so I was going between his hospital and Lurie's,” Veronda said. “I was trying to get up there to see both my husband and Jakey daily.” 
A whirlwind
Veronda’s plate was most certainly full, her mind reeling with anxiety. Fortunately, she didn’t have time to think. After dropping Katherine and Kaylee off at school, she’d hightail it to Naperville to visit David, and travel another 40 miles through some of the toughest Chicago traffic to visit Jakey.
“I had to watch the clock while I was at the hospital,” Veronda said. “My girls don’t take the bus and I had to be there in time to pick them up from school.”
Then it was preparing dinner, helping the girls with homework, collapsing in bed and crying herself to sleep, only to have to rise in a few more hours and do it again.
“Jakey was intubated and pretty much out of it,” Veronda said. “The week of Thanksgiving, his doctor told me, ‘OK, you're going to have to make a decision on what you want to do with them because he was showing signs that he could come out of intubation.’” Veronda said.
The first time doctors attempted to remove the endotracheal tube, Jakey failed to breathe on his own.
“So you get a call at four in the morning that they had to do an emergency re-intubation on him,” Veronda said.
A ray of hope
On Dec. 11, a second attempt to remove the tube was successful.
“We were told that we had to make a decision if we wanted to just bring him home for comfort care if we wanted to give him a trach, Veronda said. “And we of course decided that we wanted to go with  the trach.”
A trach or tracheostomy is a surgical opening into the windpipe creating a direct airway for breathing.
“He's already exceeded what they expected,” Veronda said. “They did not think he'd be able to go without a ventilator at all. Jake proved all those doctors up there wrong and he came home without any type of ventilator and no oxygen, no nothing.”
After being taken off the ventilator, Jakey morphed back into the active boy he was before the nightmare began in October.
“The doctors up there told us once we got the trach he would be a totally different child, and they were sure right,” Veronda said. “He's upside down in his bed. At the hospital, he was moving everywhere, pulling on his cords, and wanting grab everything.”
With her husband David home and Jakey’s homecoming planned for Jan. 20, it seemed as if life in the Veronda family would finally return to some semblance of normalcy. Then another wave of misfortune hit. Jakey’s paternal great-grandmother Kay Veronda died on Jan. 12.
“We were able to call the hospital and she got to FaceTime with Jakey one last time.”
Finally home
On Jan. 20, Jakey finally returned home. The Coal City Fire Buddies escorted the boy and his family home, holding  a parade in the boy’s honor.  Though Jakey is non-verbal and doesn’t quite comprehend the deeper meaning, like most 8-year-old boys, he’s crazy about fire trucks, sirens, and lights.
“The fire buddies have been great to our family, they came out at Christmas time when we found out that there is no way he was going to make it home for Christmas and brought Christmas gifts for the girls,” Veronda said.
Jakey was more than ready for the return home. David Veronda has been cleared to return to work, and despite the sadness and the losses, the future is looking brighter, though a three-month stay in the ICU combined with David Veronda’s medical leave has left the family struggling.
“I'm Jacob's fulltime caretaker, so I don't work and with my husband getting hurt, it’s been difficult financially,” Veronda said. “And, it’s a fight with the insurance company for everything. He's come home on some medication and insurance is already fighting it.”
How you can help
A fundraiser for the Veronda family will be held Saturday, Feb. 28 from 4 to 8 p.m. at Babe’s Tap, 755 S. Broadway St., Coal City, to help offset the medical expenses. Tickets are $10 and available at the door or by calling (779) 301-3429. Children under 10 are free. There will be a cash bar and raffles. Planners are also seeking donations of gift baskets for the raffle.
“Roar Like Jake” shirts are also available for $20. To order or for information call (815) 545-5594.