Caring for Ezra
When he's happy, Ezra Thomas' smile lights up the room. The 4-year-old, who suffered a traumatic brain injury nearly two years ago, at the hands of his mother's former boyfriend, is legally blind, breathes and eats through tubes, but continues to show his sunny personality.
"He is such a tough little boy," said Tina Jorgensen, his grandmother and caregiver. "He is a survivor. He fights to live; he wants to live. He has a positive attitude; he smiles when I don't know how he can smile."
On Friday, Ezra, who was struggling with a respiratory virus and upset stomach, nevertheless managed to smile at both his grandmother and his mother, Kaytlynne Rogerson, despite his pain. Hours later, when the vomiting increased, Jorgensen took him to the emergency room, where he tested positive for RSV, respiratory syncytial virus, a common virus that causes infections of the lungs and respiratory tract.
For most children, the symptoms are mild, and similar to a common cold, but for Ezra, they can be life-threatening. By 2 a.m. Saturday, he was being flown from St. Charles Madras to Doernbecher Children's Hospital, in Portland, accompanied by his grandmother. His mother drove up later in the day.
Coincidentally, the emergency flight was one year after a similar flight on Sept. 17, 2018, when Ezra had a cold and had to be hospitalized and put on a ventilator.
This time around, his breathing was labored and his temperature spiked on Sunday and Monday, and Jorgensen was unsure how long he would have to remain in the hospital.
"We've had so many people reach out with kind words and prayers for Ezra," she said. "We live in an amazing community."
For the first 2 1/2 years of Ezra's life, he was a happy, active little boy. "He was really good," said Rogerson, noting that he was starting to run and jump, and loved Batman. "He liked kisses and hugs."
Rogerson and Ezra's father, Andre Thomas, of Warm Springs, a member of the Confederated Tribes of Warm Springs, were together for most of that time, but had split up amicably by May 2017.
A couple months later, before she started dating Josue "Jair" Mendoza-Melo, Rogerson said that she did a background check on him, and found no red flags.
And, in their day-to-day lives, Mendoza-Melo was nice to both her and Ezra. "He didn't act angry, and he wasn't mean to (Ezra)," she said.
All that changed on Nov. 19, 2017, when she went to work and left Ezra with Mendoza-Melo. Only a couple hours later, Mendoza-Melo took Ezra to her workplace to pick her up. When she discovered that her son was unresponsive, they drove straight to the hospital, where it became clear that something had happened to her son.
She and Ezra were flown to Doernbecher Children's Hospital, in Portland, while Jorgensen, her husband, Eric, and youngest daughter, Elizabeth, now 15, all drove over to join them.
"When we hit Sandy, we got a call from our daughter that (Ezra) wasn't going to make it," recalled Jorgensen, who, at that point, had no idea what had caused her grandson's injuries. "We didn't know until about 2:30 a.m. on Nov. 20, about 14 hours after my nightmare began."
That was when a detective pulled them into a room and told them that "Jair" had admitted hurting Ezra.
"I gasped; I couldn't even imagine someone doing that to a child," said Jorgensen. "I grabbed my daughter, who was crying. I said, 'We have to focus on Ezra right now.'"
"At that point, we didn't think he was going to make it through the night," she continued. "We sat in front of his crib and prayed. I was devastated before, but I can't even describe how much worse it was, knowing someone did it intentionally."
Over the next few days, they realized that Ezra would live, but because of his quality of life, the doctors encouraged Rogerson to take him off life support. Jorgensen sent her husband and younger daughter home, but stayed with her older daughter.
"I realized that my daughter wasn't able to handle all the doctors and chaos of the day," said Jorgensen. "I didn't want to leave her alone for that. The neurologist said Ezra most likely wouldn't open his eyes and would live in a vegetative state the rest of his life."
At a care conference, with about 20 doctors, Jorgensen said that they were told that Ezra's life wouldn't be a good life. "They said he probably wouldn't see and wouldn't hear. They painted a pretty sad picture of Ezra. We chose our faith."
Jorgensen said that she prayed for a sign. "Six hours after they told us he'd most likely not open his eyes, he opened his eyes," she said.
From Nov. 19, to Jan. 8, the mother and grandmother team stayed by Ezra's side, sleeping on a bench in the room.
"My daughter slept on one end, and I slept on the other," said Jorgensen. "We didn't even think about it; Ezra was in so much pain."
While they were there, Rogerson and her mother were trained on how to care for Ezra — how to change a trach tube, so that Ezra could breathe; how to change the ties around his neck that hold the trach tube in place; how to feed him and give him medication through his gastrointestinal tube; and what to do when he throws up, which happened frequently back then.
In December 2017, Jorgensen had to return to Madras for a hearing with investigators and the Department of Human Services. "They asked if I would be willing to take him home with me," she said.
Although she had assumed that her daughter would care for Ezra, she learned that wasn't an option, because they questioned her daughter's judgment in leaving Ezra with her boyfriend. If Jorgensen didn't take Ezra, "they said he'd have to go to a care facility. It was not much of a choice."
After a 25-year career in banking, Jorgensen was also told that she'd have to quit her job in order to care for Ezra.
"My husband was not supportive of that, because he knew it was going to interrupt Elizabeth's life," she said. "We did come to terms with it ... As a grandma, I wasn't just going to let him go into a care facility."
Even though she and her daughter had practiced caring for Ezra before leaving the hospital, the first day back was one of the most frightening of her life, since DHS would only allow her daughter to see Ezra for two hours a week, at that time.
"We have to do a trach change once a week, and the ties around his neck to keep the trach in place have to be changed daily; it takes two people to do that," she said, noting that her youngest daughter, Elizabeth, began helping her.
For the first two weeks after her return, she barely slept, wasn't able to take a shower, and rarely left Ezra's side. Family and friends stepped in to assist.
"I took it day by day," said Jorgensen. "As the weeks progressed, I definitely got more comfortable with his care and he also improved."
"As Ezra became more stable, my husband and Elizabeth would sit with him so I could take a shower," she said. "It's not that (Eric) didn't want to help, he was scared of Ezra and how fragile he was and it was too much for him to watch."
In June 2018, Ezra got his first caregiver, which offered some relief for Jorgensen. "He qualifies for 257 hours a month of caregiving, paid by the state."
Earlier this year, the Jorgensens were approved as Ezra's permanent foster parents, and Rogerson is now able to spend time with him every day.
"Because of Ezra's high medical needs, he's not an easy child to take care of, so both parents cannot take care of him the way he is today," she said. "I can't become his guardian, because of the financial burden of it. We were left with no choice but to become part of the (foster parent) system. There are rules and regulations to follow, and we have to be certified every six months, and every month, have a DHS caseworker check on Ezra."
The Jorgensens set up Ezra's hospital bed in the middle of their living room, which looks out over the city of Madras. The bright, colorful room is full of books and toys, music, beaded decorations representing his Native American heritage, and most of the time, family and friends.
"We want Ezra to be surrounded in a family atmosphere, not a medical atmosphere," said Tina Jorgensen, who sleeps on a daybed, next to Ezra every night, to keep watch over him.
"We read to him, we stretch him and try to keep his arms and legs from tightening up," she said. "He has a stander, so he can put weight on his bones for half an hour, twice a day."
Ezra also has occupational, physical and eye therapy. "We have strangers in our home daily," she noted. "This is our new normal and we are adjusting as best that we can. Every day is a gift and we cherish the moments."
Over the past 19 months, Ezra has made progress in many ways, but there's still a long way to go.
Among his key milestones is strengthening of his core. "Before, he was so limp, but now, he can sit up on our lap with our support," said Jorgensen. "He's more alert and can move his left hand to his nose to rub it; he's building strength in his neck and getting more head control. He's also able to hit a button that plays music when we ask him to."
Ezra's family is relieved that Mendoza-Melo finally acknowledged his actions and on Sept. 12, pleaded no contest to attempted aggravated murder and first-degree criminal mistreatment. Although he was sentenced to 12 years in prison, Ezra's family and supporters, "Team Ezra," plan to continue to fight for longer sentences for child abusers.
"What I'd truly like to see is laws change for stricter punishment and the District Attorney's Office being able to actually have leverage to enforce them," said Jorgensen. "We all need to invest in this journey because it does affect all of us as a community."
"We have to be the advocates for our youth," she said. "Show them they deserve to be protected and loved!"
For Ezra, she has both short- and long-term goals. First on the list, for the near future is, "Get trach out and work on tummy time, building back strength in his head and neck to sit up on his own and work oh communication skills, either through switches or speech."
Although she realizes that his future is not guaranteed, Jorgensen dreams of a more complete recovery. "I will never give up on that dream," she said. "They said he would most likely not survive the night, then said he'd most likely not open his eyes, living in a vegetative state. They have been wrong so far. And the brain is amazing."
Those interested in finding out more can check out TeamEzra on Facebook.
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