Windermere's Kelly family fighting for home-care assistance

The last normal weekend for Zebadee and Jenna Kelly and their four children was at the end of January, when they spent it together, shopping, watching movies and simply hanging out.

A few days later, Jenna Kelly was rushing her husband to the emergency department because he was coughing and having trouble breathing.

Since then, the Kellys, who reside in the Summerport area of Windermere, have experienced a living nightmare that involves an anoxic brain injury, coma, therapies and much uncertainty for the future.

Jenna Kelly explained what has been happening, although she admits much of it is a blur of medical terms, diagnoses and disappointment.

“By 1 or 2 that morning, he was in (cardiac arrest) and they were able to bring him back, and since then, we’ve been dealing with this brain injury,” she said. “Medically, they’re still not sure what the cause was. … It’s very frustrating. We’ve just been relying on family and community support. At this point … he has an everlasting brain injury and it’s a severe one.”

An anoxic brain injury occurs when the brain is deprived of oxygen for too long.

Zeb Kelly, was intubated and ventilated, and he slipped in and out of consciousness for weeks. On Day 12, doctors performed a tracheostomy and put in a feeding tube.

Jenna Kelly gave an update last week and said although he isn’t following commands consistently, his body has been responding in other ways. When doctors turned off all the paralytics and sedatives Feb. 15, he slowly began waking up and his breathing was synchronizing with the ventilator.

“Initially, the first few days, it was like watching a pot and waiting for it to boil,” Jenna Kelly said. “But I’ve learned not to measure time in minutes and hours and days. We’re measuring it in weeks.”

Zeb Kelly is now swallowing on his own, and his tracheostomy has been sealed. He is starting to follow directions more regularly.

Jenna Kelly thinks her husband is aware of their presence when she and the children visit because his heart rate increases. He also will focus on their faces.

“Feb. 15 he didn’t recognize me or the kids,” she said. “But … where we are now, he is undoubtedly aware of his surroundings. If you call his name, he will open his eyes.”

The Kelly kid record audio messages on the iPad, and Jenna Kelly plays them for Zeb. They play his favorite music and show him photos.

“Our little one, when she visited last week, he was moving his arms, and she was such a personal cheerleader: ‘Keep going! I’m so proud of you!’” Jenna Kelly said. “It’s just been amazing watching how the kids are conquering this.”

Five years ago, the family faced another tragedy when their 11-year-old daughter, a twin, died of myocarditis.

THE NEXT STEP

Zeb Kelly has been medically stable and ready for discharge since Feb. 24, but his wife has been fighting for an appropriate discharge order. He needs a hospital bed with an air mattress, a tilt-in-space wheelchair, a Hoyer lift and a care plan.

“I told the hospital, ‘You can’t send him home without these things, because how would I care for him?’” Jenna Kelly said.

And once he’s home, he will require round-the-clock nursing care for feedings and medication and to turn him every two hours.

“It’s been such a journey,” Jenna Kelly said. “We’re in such a unique position; I use that loosely. … Our private health insurance does not cover at-home health and health aides, and it does not cover long-term care at a facility. It will cover short-term care at a neurological rehab center, but he does not meet the admission criteria because he cannot participate in the daily therapies … for the length they need him to.”

Jenna Kelly is a Central Florida attorney, and her income keeps him from getting the services he needs, she said.

“It’s just going to be such a long road regarding his neurology recovery,” she said. “The disheartening part is we get denial letter after denial letter. … I’m becoming his long-term care provider. It has been so hard on the kids — they are 16, 14, 13 and 6. I’m not going to ask them to take care of their father.”

Before the brain injury, Zeb Kelly was very much a family man who loved spending time with his wife and children. They made frequent visits to Walt Disney World and Disney Springs, took Disney staycations, made charcuterie boards for watching movies and binge-watching TV shows, held campouts in the master bedroom, played Zombie games, and splashed around in the community pool.

“My son and my husband watch ‘Cobra Kai,’ and he hasn’t watched this season because he’s waiting on his father,” Jenna Kelly said. “I think it’s difficult to resume those activities without him.”

IT TAKES A VILLAGE

Jenna Kelly’s family has been super supportive, she said. Her mother lives in South Carolina but has been staying with her since February. Her brother and father have taken rotations, and her sister-in-law is helping prepare the house for Zeb’s return. Her brother and cousins keep family and friends updated on the Team Kelly – Zeb’s Road to Recovery Facebook page.

““We’ve been trying to get the house ready and make it caregiver-friendly,” Jenna Kelly said. “He’s going to be in our dining room. … There’s been lots of rearranging and organizing.

“They’ve been great … just bringing in food and checking on the kids and taking them out and maintaining a sense of normalcy,” Jenna Kelly said. “My kids miss their father. I haven’t spoken to my husband in two months. … not having my best friend has been really difficult.”

Jenna Kelly remains frustrated with the answers she is given. She worries about the future and what it looks like for her husband.

“He walked into the hospital a healthy 35-year-old person; he was a mechanic at Walmart in Hamlin,” she said. “He will never do that work again. He was very athletic and physical. Our home is not equipped for this. … I don’t have a problem paying for the bills; it’s just his medical journey, long term, (that worries me).”

GOFUNDME SET UP 

According to a GoFundMe account set up for the family, “Because of the nature of Zeb's brain injury, medical professionals indicate that the next six months are crucial for his recovery.

 “Zeb's rehabilitation is promising; however, the costs involved are overwhelming, and Zeb and Jenna are not eligible for medical assistance. The total at-home care and therapies that Zeb needs is not covered by their private insurance. To continue progressing, Zeb will need financial help that surpasses the means of the household. All donations will go directly to providing aid for Zeb currently and beyond.”

The goal is $350,000, which is the estimated cost for one-and-one-half years of coverage and rehabilitation.