Brody Eugene Tucker will celebrate one year with his new heart Aug. 1
Born premature at 34 weeks gestation at 6:50 a.m., April 25, 2007, at Western Missouri Medical Center, Brody weighed 4 pounds, 9 ounces. The hospital released him two days after delivery.
After several trips to Children's Mercy Hospital in Kansas City, Brody's mother, Melissa, and father, Gary, realized the extent of Brody's heart condition. He received his new heart Aug. 1 after waiting about two weeks.
Melissa said that the year has been full of travel.Brody's team of doctors is at the Children's Mercy Hospital in St. Louis and with regular monthly check ups in St. Louis and in Kansas City, Melissa said they are happy to be home.
In January, the Tuckers received a scare when doctors warned Brody's body might reject the heart. But doctors in St. Louis reviewed biopsy results and gave the all clear."His heart has been great," Melissa said. "There really hasn't been a rejection, but something else was really going on."On April 25, his birthday, Brody's last slide showed no rejection."He still doesn't eat orally," Melissa said. "He used to have an NG (nasogastric) tube, but at the end of February he went in for a G-tube placement."Gastronomy tubes last about six months and can be replaced through an existing passage without an additional endoscopic procedure."That just provides nutrition straight through his body," Melissa said. "We got that because we knew he was not going to get adequate nutrition by mouth."Brody went downhill fast, "really vomiting every day, just losing lots of weight and that's when we got put on continuous feeding," Melissa said.Brody got down to almost 12 pounds near his first birthday because the Bolis feeding, feeding every three hours, caused extreme diarrhea.
After a month-long stay at Children's Mercy in Kansas City, Brody transferred back to St. Louis."He's a complicated kid," Melissa said, "so we got transferred back to St. Louis for another five or six weeks. We've been in the hospital a lot this year."She said doctors in St. Louis found high ammonia levels in his blood, which is toxic to the brain."The good news is their MRI scans show that there is no brain damage, but they don't know what is causing that," Melissa said.
She said that right now, if Brody gets food in his stomach, his ammonia level increases.For Brody to receive nutrition, he has a BROVIAC catheter placed in the superior vena cava of his heart."He gets TPM (topiramate) and lipids," Melissa said.Gary said, "Basically the nutrition is skipping the whole digestive system and is already broken down and is circulated in the body."Melissa said
Brody may have a liver issue."There is a correlation with congestive heart failure and liver issues," Gary said. "A lot of times - I guess because of the high or low pressure that the heart puts off - the rest of the body will try and compensate; it backs up."She said that is one theory doctors are considering. Another is that Brody may have a specific genetic metabolic disorder which causes high ammonia levels."He has some very intelligent people stumped right now," Gary said.
For the moment, Brody is gaining weight and at nearly 18 months weighs 16 pounds 12 ounces."He's huge," Melissa said. "The doctors are very impressed with his weight gain."Speech and physical therapists work weekly with Brody and he seems to be more stable."Now when he goes in to the hospital, we don't all go in," Melissa said, "because we know he's fine right now."Melissa said she is still unable to work, but Gary has a job and Brody is maturing."He's a happy kid," Melissa said. "He's cutting four teeth now."
The couple has a house just south of town and daughter Bailey plays with her little brother."I think out of all of this, it's probably been toughest on Bailey," Gary said.They said that she has had nightmares about her brother dying."She lost her little brother and both her parents for half a year with this."In the new house and neighborhood, Melissa said Bailey has found friends and delights in being a protective older sister, telling them that they can not touch her brother."We're definitely getting together as a family," Melissa said. "It's a different life. It really takes a hospitalization to make you realize what's important."Once ammonia levels in his blood are regulated, Brody will be able to eat and run around with other children."We'll probably let him get away with murder," Melissa said. "We just want to have a good family life and make some memories."
Brody will need another heart, eventually, because the one he has will not grow large enough to sustain his body.Gary said without continued support from their families, church and community, they could not have gotten through the last year.
"The Tucker family's home," Melissa said. "That's all that matters.
Source: Daily Star Journal:
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