MILTON — Thanksgiving will never be the same for the Sweat family in Milton.
After a long wait, 8-year-old Avery Sweat received a new heart from a donor family just in time for the holiday.
“I can’t say enough about how Thanksgiving will never be the same for us,” said Avery’s mother, Ginger Sweat. “It will always be this magical time where someone so selflessly gave. I only hope and pray that the donor family finds peace through their sorrow in knowing their loved one will live on through Avery. They have given us a gift that there are no amount of words or monetary compensation for.”
Avery Sweat, the daughter of Jeremy and Ginger Sweat, of Milton, was a healthy 7-year-old earlier this year before she started developing symptoms that her parents thought could be a flareup of asthma.
“I had taken her to a well-child visit and brought up that I thought she was having some issues with asthma,” Ginger Sweat said. “She was coughing and seemed more tired than usual.”
Weeks went by and Avery was feeling even more tired.
“She couldn’t stay awake for more than three hours,” her mom said. “She also began to puke daily and was constantly nauseated and complaining of stomach pain.”
It was also harder for Avery to breathe and her medicine was not working, so they took her to Cabell Huntington Hospital’s emergency room. Doctors alerted the family something was wrong with Avery’s heart. She was then rushed to Nationwide Children’s Hospital in Columbus, Ohio.
“I was shocked,” her mom said. “They took her by ambulance, and we followed that long drive, praying the entire way.”
Following extensive testing, it was determined that Avery needed a new heart and she was placed on the national heart transplant waiting list.
“While on the list, we had several problems,” Ginger Sweat said. “She had a stroke shortly after LVAD (left ventricular assist device) placement. She was paralyzed on the left side for a bit and still has weakness. She went blind — her vision went from 20/30 to 20/800.”
Avery also started having headaches, her mother said.
“At first we thought they were migraines. I am a sufferer and mine started around her age. But they kept coming and going so quickly we asked for a head CT. At that point it was discovered that her brain was completely displaced and her brain was severely squished to one side,” Ginger Sweat said. “The doctors still don’t know how she was up walking and not just having nonstop seizures.”
Her mom said Avery had a craniotomy to remove the pressure and fluid from the hemorrhage.
“They drilled two holes in her skull,” she said. “At first she did really well, but after a couple of hours I was going to go grab everyone lunch. I told her I loved her — in seven years she had always said it back to me, but this time she just stared at me like she wanted to say it but couldn’t. I immediately knew something was wrong.”
She said Avery was having seizures. She had intensive therapy and recovered well over the next few weeks, her mom said.
“She recovered well enough to be discharged to our townhouse, which is just off the hospital campus here in Columbus,” Ginger Sweat said. “We spent about a month together, playing with her sisters, decorating the Christmas trees, celebrating her birthday, and letting her live her best life even though she was anchored to her 8-pound book bag with her batteries and device or needing to be plugged into the wall.”
Then, on Thanksgiving Day, the family received the call they had been praying about for several months.
“We got the call around 8 a.m. on Thanksgiving morning. I was in shock, but my husband and I went into Avery’s room to let her know. She grabbed her face and began sobbing. She said it was the best day of her life,” Ginger Sweat said.
Avery’s heart transplant was a long procedure, according to her mother.
“We got there at 11 a.m. on Thanksgiving and she was in surgery at 9:30 p.m. until around noon the next day,” Ginger Sweat said. “They had a hard time getting the heart to start at first. The doctor said that her chest plate was very brittle and there was lots of scar tissue.”
The first day after the transplant was a tough one for Avery.
“For the first day, her body would not cooperate to come off of the vent,” Ginger Sweat said. “It was very frustrating for her. She was not sedated and was trying to talk the entire time. She wanted that tube out so bad.”
However, each day she continued to recover and get better.
“Each day has brought more and more improvements. She is on less and less meds and the transplant team and entire staff are so pleased with how well she is doing,” Ginger Sweat said. “They are all so amazing and supportive. We could not ask for more.”
Avery is no longer in the intensive care unit (ICU), her mom said Thursday. However, she will still need several tests and follow-up procedures.
“There will be lots of rehab as well,” her mom said. “Everything will be pretty intense for the next year, then settle down some. We have to take training classes on her care. It’s pretty intense. She has lots of rules to follow to prevent rejection and infection, and we will need to make lots of adjustments to our home in Milton. It will need a huge deep clean as it has basically been unoccupied for six months, aside from small trips back here and there. Our washer and dryer both quit working and need to be removed and replaced anyway because of mold and mildew. Those things can be detrimental to Avery. Obviously we want everything as clean and sterile as possible.”
Avery has not been home since she was taken to the hospital in Columbus on June 18, but her mother says she can’t wait to return.
“She wants to go home to West Virginia, to Milton, to her family and friends, and be able to run, play, swim and do all the things she loves,” Ginger Sweat said.
She thanked the Milton community for the outpouring of support.
“I can’t thank them enough,” she said. “They have cried, prayed, had fundraisers, called and checked on us, sent food, sent gifts, sent money — we can never repay or say how thankful we are. We just want to send a special thank you to Milton, Milton Elementary School, the team and staff here at Nationwide and to everyone who has helped us through. We know we have a long road, but we embrace and are thankful for each second and each moment with our family. Most of all, we thank God for providing more than we know, more than we need and definitely more than we deserve.”