By BECKY KISER
Hays Post
After suffering from a rare genetic fibrosis of the liver, Caroli syndrome, since the age of 2, Liam Edwards, 13, of Hays, was on a liver transplant list for just six days.
Liam was evaluated in mid-March to see if he was a good candidate for a liver transplant and what type of support he would need.
He was placed on the waiting list at Children’s Mercy Hospital in Kansas City on April 20 and was offered a donor liver on April 26.
On May 7, 11 days later, Liam was released from the hospital after a successful transplant.
Her parents, Ashley and Ian Edwards, both nurses, were amazed at how quickly the process went.
“He handled it like a champ,” said Liam’s mother Ashley.
“They told us to be ready, that Kansas City Children’s Mercy Hospital has the fastest moving transplant list in the United States, but I don’t think six days is enough time to be completely ready,” a- she declared.
The welcome phone call came after the Edwardses got home from church. Their reaction, she said, was: “Holy cow! There is so much to do and take care of. »
“We had been watching the disease progress for a long time. He was going through surgeries, and it got to the point where it was affecting his heart, his lungs, his stomach, pretty much everything,” Ashley said.
“Luckily, his father and I are both nurses, so it was a little easier for us to handle than for someone who doesn’t do anything in the medical field. It would be incredibly overwhelming for them.”
The illness gradually slowed down Liam’s daily life.
“He wasn’t able to keep up with his peers,” Ashley said. “He wasn’t as active as he wanted to be. That’s when we started to notice and think it was time to do a transplant because you don’t want to harm the quality of life of a child.
Liam and his mother are expected to stay in the Kansas City area until the end of the month to be near his medical team to monitor his new liver and blood levels.
Then, if everything looks good, they will return to Hays.
“Of course he is recovering now. But he should have increased his energy and had better endurance. Things like cycling were getting difficult. He was exhausted after cycling to school,” Ashley said.
“We hope he feels better, wants to do more and is able to do more.”
His family started noticing a positive change last weekend.
“His old personality has come back. Liam is definitely kind of a class clown. He’s always giggling and laughing and making jokes,” Ashley said.
“On Monday he told us he finally felt like himself again. There for a while he was pretty calm, pretty stoic.”
Ashley said Liam was very happy to be released on Tuesday.
Liam will return to Kansas City every month for exams. Weekly blood draws and tests will continue for the rest of his life. He will also have to take the anti-rejection drug Tacrolimus for life. This is an immunosuppressive medication designed to teach your body not to reject your new liver.
The $489 course will be over for summer break before Liam returns to Hays.
Hays Middle School granted him a waiver for time he missed in his seventh-grade classes. Liam plans to return ready for eighth grade this fall.
Currently, Liam is immunocompromised.
He cannot go out in public for eight weeks. They must wear a mask when out and about and practice social distancing.
His mother said donations to a GoFundMe account started by his aunt Lindsey Patterson, as well as other financial contributions for Liam’s liver transplant procedure, will go directly into a savings account for him.
“The goal will be to pay any medical bills (after insurance). This will help him pay for his medications and follow-up medical care,” she said.
Liam and his family are grateful for the sacrifice made by the donor family.
“We are thinking on their behalf about this choice that will impact us for the rest of our lives,” Ashley said.
“As a mom, you know someone else has had the worst day of their life.”
“This is something we’ve wanted and needed for 11 years. It’s kind of hard to put into words how grateful and excited we are. We’re just thrilled,” she said .
“We hope that through this process people will realize how important it is to donate their organs and to be donors if possible.”
Both Ashley and Ian Edwards are organ donors.
News Source : hayspost.com
Gn Health
