Tiny, but strong

One afternoon this week, 5-year-old Ezra Bottoms wore his police hat and carried around a Ninja turtle as he played with his 2-year-old sister. His parents, Patrick and Kari Bottoms, smiled as they watched over them. Three older siblings came inside from riding bikes in the driveway and Dad settled a childhood squabble. All were blessedly normal activities in a household with five children. All the while, Ezra's brand-new heart beat inside his small body. Pieces of normalcy are a huge blessing for the Bottoms family as they readjust to having the family back together. Ezra and Kari spent more than 200 days in a Columbus hospital during the past year as Ezra underwent surgeries and ultimately received a heart transplant. Originally from Texas, Patrick and Kari lived in Georgia for five years before moving to Ohio less than two years ago to take the job as pastor of Grace Baptist Church on SR 101. "Pretty much our entire time here has been (Ezra) in the hospital," Patrick said. A few years ago, before they arrived in Tiffin, the couple adopted three siblings from foster care — Ethan, Elijah and Hannah. "We adopted the oldest three first, and almost a year later we found out biological mom was going to have a fourth," Patrick said. They met Ezra five years ago this week when he was 16 days old. They welcomed Ezra into their lives, and two years ago, biological child, Abigail, joined the family. Patrick and Kari found out when Ezra was born that the left side of his heart hadn't fully formed and he would need surgery to correct the congenital heart issue. Called hypoplastic left heart syndrome — or HLHS — the birth defect affects normal blood flow through the heart. As he developed during pregnancy, the left side of his heart didn't form correctly. In addition, Patrick said Ezra had a few more complications. After two surgeries, heart specialists at Nationwide Children's Hospital, Columbus, had some bad news for the family. "They said the third surgery wouldn't do any good for him, and they said a transplant was the only option," Kari said. They got that news in July 2020, and Ezra was placed on the waiting list to receive a new heart on Aug. 21. And the waiting began while Ezra remained in the hospital and his mom stayed with him. On March 17, the phone call arrived. Ezra was getting a heart. Kari was home for a visit — preparing mentally for a long wait, she said, and switching out winter clothes for summer ones. Just as she and Patrick entered the church for a Wednesday evening gathering, they got the news. "We had literally just walked into the building," Kari said. "We got to be with our church family. There was a lot of tears, and a lot of laughter. "It was very surreal," she said. "We got the call at 6 o'clock and by 2 a.m. they were wheeling him in for surgery." Patrick drove down with Kari, but drove back to conducted a funeral, and then met them back at the hospital. "I got back and got to see him while he was waking up," Patrick said. He stayed another day or two and returned to the rest of the family. Transplant day came on Ezra's 190th day in the hospital and 210 days after being placed on the transplant list. He steadily improved, and Kari kept everyone updated on the Ezra's Heart Page on Facebook, as she had been doing all along. She posted on April 1 that, despite being in ICU, "today for the first time post transplant really Ezra has seemed a little more like himself!! He woke up this morning wanting water and his iPad. He has also been more alert and interactive." On April 10, Kari posted that Ezra had been an inpatient for seven months. "Hard to believe 7 months have now passed," she said in the post. "It was Sept 10 that we first got admitted. At that point, Ezra had been on the transplant waitlist for only 20 days." In an April 12 post on the said they were getting ready to leave the hospital after 215 in the hospital and 25 days after the transplant. He arrived home to his family on April 13 with an escort from Clinton Volunteer Fire Department and the Seneca County Sheriff's Office. After six "great days" at home, Kari said, which included his fifth birthday, Ezra went back to the hospital for follow-up tests April 19 and 20. He was discharged again. However, and he and his mom were leaving the hospital grounds, they were called back and he was readmitted because a test result had shown signs of moderate rejection. By April 22, he was back in ICU with a virus (not COVID-19) and spent another 10 days in the hospital before he returned home again May 3. "We've been told the first year can be kind of rough," Kari said. Altogether, Ezra and Kari spent 216 days in the hospital. "I only stayed two nights with him," Patrick said. "The rest of it was Kari." During this time, Kari already had committed to taking classes at Heidelberg University, working toward her master's degree in counseling. Because the world was in the midst of the pandemic, her classes were online and she studied from her son's hospital room and completed her first year of the program. "Even in the hospital, I was pulling pretty good grades," she said. In the meantime, Patrick handled the home front. In addition to his full-time job at the church, Patrick took on full-time duties at home with their four other children. Most work was done from his home office because of the pandemic, but he went to the office sometimes. Patrick said they couldn't have done it without help from the community. They said they're grateful for the supportive community that welcomed a new family into its midst and helped out whenever needed by providing food, watching the children and offering money. "Our entire community has been extremely supportive," Patrick said. "God brought us up to an amazing place. God provided beautifully through all of it." One of the many examples was an evening he took the kids to eat at Buffalo Wild Wings because he didn't feel like cooking. While the family was there, an unknown person purchased a gift card to pay for their meal. At Christmastime, three organizations adopted the family and provided gifts. Many people offered to babysit whenever needed. In the middle of it all, the family moved from Bascom to their current house to meet Ezra's needs. "Our sincere, heartfelt thanks to Tiffin, Bascom, Seneca County," Patrick said. "You made a hard time so much easier. "In the middle of a pandemic, they were loving our family through it." And they prayed for Ezra. "His whole story is one of God's provision," Patrick said. "It's very humbling the way the God just provided everything, has taken care of everything." Even when times were especially rough. "Inevitably, right about that time something would happen, there would be an encouragement," he said. And when the call came, Patrick and Kari were in the perfect place with their church family. "Even the surgeon he ended up with was the chief surgeon," Kari said. When the right heart became available, they all were ready. "They couldn't accept just any heart for him," Patrick said. "His heart had to be perfect." Patrick and Kari hope to someday meet the donor family, but it'll up to the family if they choose to meet the child who received their child's heart. They urged everyone to think about organ donation in advance. When someone on the transplant list gets an organ, it means another family has suffered a tragedy. "I know it's hard as a parent to think about that, especially with young kids," Patrick said. However, if tragedy happens, he wishes more children could be as fortunate as Ezra to get a new chance at a quality life. Being on the transplant list is nerve-wracking, Kari said. "Every time the phone rings, you think 'Is this the call?" she said. "The longer it goes, so many lose hope. "We had those days where we thought we can't go another day," she said. There were several times when they didn't think Ezra would live. "We had those scary conditions where we weren't sure he was going to make it for transplant," she said. One of those times was about a week before the surgery. "Ezra was looking really rough," she said. "The hardest part was watching him suffer." Other families continue to await transplants for their loved ones. "By donating, you're giving a life not only to the person who needs the organ, but to the family that loves them," she said. "Whoever that family was, they gave me my family," Patrick said. "They gave me my son." Kari said she met many people on the waiting list during her months in the hospital. She learned seven lives can be saved from one person who dies and donates their organs — and it's even more when tissue can be used. Kari said she's thankful for the hospital personnel who made their long stay a bit easier. She said Ezra was well loved by nurses and other staff members. "He made the hospital his playground," she said. The nurses and nutritionists played with him, and he became a favorite. They lined up in the hallway to say goodbye when he left. Mostly, Patrick and Kari are thankful to be together again with their entire family. "We're having to relearn how to be all together," Patrick said. "To get used to living as a family again. "All his siblings adore him," he said. "Every last one of them." As Ezra's journey continues, Kari said there will be frequent testing the first year, which will be taper off in the second year and beyond. "There's still a long road ahead," she said. "It's a lifelong process." He'll take anti-rejection medication, probably for the rest of his life. "We call him Mighty Mouse because he's tiny, but strong," his parents said.