Suffering from cerebral palsy as the result of a near-drowning last spring, 3-year-old Rylan Titus requires caregivers around-the-clock for his every need.
His mother, grandmother, great-grandmother and a Medicaid-provided nurse all take turns caring for him.
Rylan is limited to communicating with a sparse handful of words and phrases. He isn’t able to walk without assistance, feed himself or partake in the many activities a young child his age would typically do. He can’t run around on a playground, jump in puddles in the rain, or go to typical preschool.
Just more than one year ago, he was submerged in water for up to an hour after falling into a retention pond near his father’s apartment, which cut off oxygen to his brain, causing him to suffer from cerebral palsy.
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Click here to purchase photos from this galleryThe day was April 1 when Dannielle Waggoner received the terrible news about her then two-year-old son.
Unable to reach Waggoner over the phone, Greenwood police rushed to Olive Garden, where Waggoner was working as a server. An officer informed her that Rylan had been in an accident, and she needed to come with them immediately to the hospital. Police couldn’t initially tell her what type of accident had occurred or even if Rylan was still alive.
With emergency lights on and sirens blaring, police rushed to get Waggoner to the hospital. No one knew if Rylan would be alive by the time they arrived. During the 10-minute trip, an officer brought Waggoner up to speed on what had happened during a spring afternoon in 2016.
Rylan, who had been staying with his father as part of a weekly visit, had wandered outside and fallen into a pond several yards away from the apartment while his father and uncle were inside asleep. Rylan was submerged in the water for up to an hour before a neighbor returning home on a lunch break happened to see him, according to a collection of Greenwood Police Department reports from the incident.
The neighbor alerted two maintenance men who pulled Rylan from the water and called 911. A Greenwood police officer was the first to arrive on the scene, and he immediately began performing CPR before paramedics arrived and continued the efforts to resuscitate Rylan on the way to Franciscan Health Indianapolis, the reports said.
Five Greenwood emergency responders were later honored with the Indiana Emergency Medical Services for Children Pediatric Hero Award for their efforts in helping save Rylan. They managed to get about a gallon of water out of Rylan’s lungs, performing CPR continuously on the drive to the hospital.
Steps had been taken to prevent Rylan from wandering out of the house, with a child-proof lock installed out of his reach near the top of door. But when Rylan’s father, Logan Titus, took a nap that afternoon, he hadn’t locked a child proof latch at the top of the door because he was waiting for his brother, Taylor Titus, to return, he told officers, the reports said.
Logan Titus told officers that he took the nap because he has difficulty sleeping at nights due to often working until 3 a.m., the reports said.
When Taylor Titus returned to the apartment, he told police he saw Rylan playing with toys in the living room, but he didn’t lock the door. Taylor Titus also took a nap that afternoon inside a bedroom with a suitcase blocking the door to keep Rylan from disturbing him, the reports said.
While the two men were sleeping, Rylan opened the unlocked door and went to the retention pond, the reports said.
The Johnson County Prosecutor’s Office reviewed the Greenwood Police Department investigation of the incident. No one was arrested and no criminal charges was filed.
Waggoner said the Indiana Department of Child Services has informed her that it is still investigating the incident. A department of child services spokesperson declined to comment, citing federal and state laws that prohibit it from confirming if there is an open case.
Miracle
Rylan’s heart wasn’t beating when he arrived at the emergency room. A team of doctors, nurses and paramedics went to work on him immediately, giving medications, putting him on a ventilator and performing CPR.
That his heart began to beat about 15 minutes later was a miracle, said Dr. Christopher Hartman, an emergency room physician for Franciscan Health.
For someone to be submerged in water and go without breathing for a long as Rylan did and make any sort of recovery is unusual, Hartman said.
“We had a little spring miracle that day being able to get him back,” Hartman said.
One factor that may have helped save Rylan’s life was the cold temperatures of the water that day.
“We want to continue to resuscitate someone until they have reached normal temperature,” Hartman said. “We are somewhat fortunate with children in that they can benefit from a reflex where their body will go into almost a hibernating state if they hit cold water.”
Once Rylan’s heartbeat was back, he was flown to Riley Hospital for Children. Waggoner wasn’t able to ride along in the helicopter because of the number of people needed to care for Rylan on the flight.
During the seven weeks Rylan stayed at Riley, both as a patient and in rehabilitation, his mother never left his side. Waggoner stayed at the hospital around-the-clock, keeping watch over her son and sleeping on a pull-out couch in his room.
Doctors kept Rylan in a coma for the first week, with the young boy being surrounded by a plethora of medical devices, machines and tubes all necessary to keep him alive.
“We learned in the ICU right away that things weren’t going to be the same,” Waggoner said.
Rylan suffered brain damage resulting in cerebral palsy, but didn’t have any permanent damage to any of his organs, she said.
She credits the support of her family and co-workers with helping her make it through those challenging weeks. Her co-workers helped raise money for her and catered food for nurses.
“I don’t know what I would do without my family,” Waggoner said.
His future
Despite nearly a year of almost daily therapy and treatments, doctors still don’t know what Rylan will eventually be able to accomplish, only that he’s made good progress so far during treatment.
Because of the damage to his brain, he has to relearn everything again, Waggoner said.
Tasks as simple as crawling across the floor or sitting in a chair require continual practice, and he still has to be fed through a tube in his stomach.
“My hope as a mother is that he will make a full recovery, but I also try to be realistic and be proud of the little accomplishments he does have and be grateful that he is still here,” she said.
Waggoner wants Rylan to be able to walk again and feed himself.
Therapists at the Jackson Center for Conductive Education in Mooresville, where Rylan goes for therapy twice a week, have been working with him since last fall.
Some progress Rylan has made includes taking steps with assistance and being able to hold himself up in a four-point position on the ground, said Lara DePoy, an occupational therapist and program director at the Jackson Center.
The goal of the therapy is for Rylan to become as independent as he can, she said.
“We can’t tell with any of the kids where their stopping point is going to be,” DePoy said. “Our job is to push them to the maximum level to get as much independence as possible.”
Besides therapy at the Jackson Center, Rylan also has physical therapy at Franciscan Health twice a week and attends a developmental preschool two times a week, Waggoner said.
“I don’t think of him any differently,” Waggoner said. “He is my son, and I love him. I wouldn’t trade him for anything.”
Waggoner believes Rylan has an understanding of what is going on around him, but often lacks the psychical ability to express himself.
“He has the same personality, the same spirit,” she said. “He knows who we all are. He knows what is going on around him. He knows his colors. If you hold up two flash cards and say ‘Which one is yellow?’ he will look at the yellow one.”
That distinct personality extends to the music and TV shows he likes. Rylan will smile if something is on that he enjoys or roll his eyes at something he doesn’t like, Waggoner said.
He likes the children’s show Caillou and enjoys songs by Bruno Mars and Ariana Grande. “My Redeemer Lives” is another one of his favorite tunes, she said.
While Rylan’s vocabulary is limited, at times he can surprise his family with what he is able to say.
Rylan’s great-grandmother, Cathy Waggoner, recalled a situation where she had just handed Rylan to his mother, who was cradling him in her arms. He looked up at his mother and said “I love you.”
“It makes me teary-eyed,” she said.
New expenses
Waggoner lives in Whiteland with her grandmother, Cathy Waggoner. Her mother, Jeanna Tanner, often helps in looking after Rylan as well, including taking him on trips to the doctor or therapist.
At the time of Rylan’s injury, Waggoner had just gotten accepted into nursing school and was finishing the final two prerequisite courses. Now, because of the need to care for Rylan, those college plans are on hold, though she hopes to go back to school someday, perhaps to become an ultrasound technician.
The hospital bill for Rylan’s care amounted to $1.3 million. The helicopter ride to Riley alone was $30,000. Insurance footed nearly all of the bill. However, it only covers some of Rylan’s further therapy that he needs, she said.
Medicaid will pay a nurse for up to 40 hours a week to watch Rylan, and pays for therapy at Franciscan Health, but other treatment, such as conductive therapy at the Jackson Center in Moorseville which costs $300 a month, has to be paid out of pocket. And that doesn’t include the several hundred dollars in gas Waggoner spends to take Rylan to therapists and doctors appointments five days a week.
Another challenge in the coming year will be getting a wheelchair accessible vehicle for Rylan, who soon will outgrow the carseat they currently use for him.
While Medicaid will pay for a nurse to watch Rylan, finding one available is nearly impossible, Waggoner said.
For now, Rylan has a nurse who can come for several evenings a week, which frees her up for work. Caring for Rylan has become a team effort between his mother, grandmother and great-grandmother.
Waggoner wants to work full-time and go back to college, but until she gets a full-time caregiver for Rylan, that won’t be possible. To continue to pay for the extra therapy for Rylan, she is working to raise donations for the Jackson Center with its Walking for Dreams fundraiser, as well as get donations through a GoFundMe.com page.
She doesn’t know what the future holds for her son, but she does know what she wants it to be for him.
“I want him to have as normal a life as possible,” Waggoner said.
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The Jackson Center for Conductive Education is raising funds through June 3 with Walking for Dreams. Here’s how you can donate:
- Online at www.walkingfordreams.org. Click “make a donation,” select “individual walker,” then choose “Titus, Rylan.”
- By mail with a check to 802 N. Samuel Moore Parkway, Mooresville, IN 46158. Write Walkign for Dreams and Rylan Titus’ name in the memo.
- Over the phone by calling 317-834-0200.
Dannielle Waggoner also has a GoFundMe.com page to accept donations to help cover the costs of paying for Rylan’s therapy. The web address is www.gofundme.com/74y26vbs.
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