Liam Young, the 2½-year-old hospitalized last fall for two months for a still-undiagnosed illness, has proved to his parents he is willing to fight through all the obstacles he’s faced, including life without fingers and toes.
Liam is now at home with his parents, Chris and Angela Young, in Louisburg, learning to adapt to his post-illness situation.
Chris and Angela Young took their middle child, Liam, to the emergency room Oct. 24 because he didn’t seem to be recovering from the flu. Liam was flown to the Pediatric Intensive Care Unit at the University of Iowa Hospital in Iowa City because it appeared that his liver and kidneys had shut down.
Upon arrival at PICU, Liam had cardiac arrest, was successfully resuscitated and was put into a medically induced coma. He received a blood transfusion, dialysis, antibiotics and plasmapheresis (separation of blood and platelets).
Liam had several complications, including swelling from the build-up of fluids when his kidneys weren’t working, causing blisters all over his body. He also had blood clots in his fingers and toes, a protective measure of the body to ensure blood flow to the main organs, causing the tissue of his fingers and toes to discolor and die. Liam’s fingers and toes had to be removed as a result.
He has gone through seven surgeries in the last few months.
“A lot of that has been skin grafts,” said Chris Young. “His damaged tissue was so deep on his arms and legs that they had to replace it. They used skin from his scalp and his back for skin grafts. They take a thin layer of skin, poke holes in it and place it somewhere else.”
Angela Young said Liam has earned more than 1,000 beads for bravery, a program at PICU that awards young patients a bead for every procedure completed. He’s had more than 700 staples and stitches alone.
Liam was released from the hospital for a week at Christmas, but had to return on Dec. 28 for another surgery. He was released for good on Jan. 13, but returns once a week for a check-up or small operation where he is in and out in the same day.
“Things are starting to go back to the way they were, somewhat,” said Angela Young. “We have a new normal now, a new routine.”
Twice a day Chris and Angela unwrap and change the dressings on Liam’s feet. They apply lotion to his hands many times throughout the day. Liam is off pain medications and only complains of being itchy.
“He no longer has his nose tube, the feeding tube,” said Angela Young. “When it’s removed a certain length, we could safely put it back in without the help of the doctors. But Liam pulled it out an inch too far, so we took it out completely and he’s been gaining enough weight without it.
“He loves his high calorie diet. I love it, too. Everything is smothered in butter and cheese. He can have ice cream whenever he wants.”
Liam’s siblings, Libby, 1½, and Noah, 5, have adjusted well to Liam’s new needs, according to their parents.
“Libby has an issue with being a little too rough with Liam sometimes,” said Angela Young. “She just wants to play.”
“We showed Noah Liam’s feet and now he is very protective of his little brother,” said Chris Young.
Angela Young said Noah really missed his little brother while Liam was in the hospital.
“Before Liam got sick, they were nice to each other, but not necessarily loving brothers,” she said. “Noah has a big heart. He broke down when Liam was in the hospital. He was afraid his brother would never come home again to play with him.”
Now they catch Noah snuggled up with his brother every chance he gets.
Chris Young asked Liam to say what happened to his hand.
“A shark bit my fingers off,” said Liam. It’s the story he’s sticking to and he knows that “chicks dig scars.”
Chris Young said Liam has been extremely positive about the entire situation.
“He doesn’t need any help staying positive,” said Liam’s father. “He’s done so well at it on his own.”
The Young family saw an outpouring of gifts from local families at Christmas. They appreciate the help as they were spending so much time at the hospital when not at their jobs, making it impossible to shop for their children’s gifts. While Liam was in the hospital for two months, Chris Young used his Family and Medical Leave Act time fairly quickly and didn’t get to take more time off from his job once that ran out. He does service repair work for Vendors Unlimited in Dubuque. Angela Young was able to cut back from 60 to 40 hours at her job as a seamstress at Rite-Hite in Dubuque and they were flexible about her time at work as long as she was able to get her hours in. She was able to be with Liam when Chris had to be at work. They were able to make it work.
“Her job was very forgiving in our situation,” said Chris Young. “We need more companies like hers that allow for family emergencies.”
The couple is renovating their home to make it easier for Liam to get around.
“It’s been a lot of work and we’re trying to find the time to work on it,” said Chris Young. “It’s taken a lot longer than we wanted since we’re doing a lot of the work ourselves.”
The family has started a new routine when visiting PICU for Liam’s appointments. They go to the rooms Liam used to stay in and visit with the nurses and doctors who helped him throughout his illness.
“We wanted to show them the good that has come of their help,” said Chris Young. “Liam loves going up there for all of the hugs and kisses.”
The family has a surprise for Liam. Walk the Moon, the group that sings Liam’s favorite song, “Shut Up and Dance,” will be in Cedar Rapids this summer, and they are taking Liam to see the show.
The Youngs have been diligently updating the “Updates for Liam Young” Facebook page since the whole situation began. Even though they are no longer in Iowa City every day, they have a lot of progress and good news to share with the people who have supported Liam throughout his illness.
Chris Young said people from New Jersey, Florida, Washington and Texas have kept in touch with messages of inspiration for Liam. Chris hopes he’ll be able to travel cross-country with Liam at some point to let those supporters meet Liam.
“He was shown so much support that in return we show people on Facebook how much he improves every day,” said Chris Young. “People across the nation are keeping tabs on his progress.”
Angela Young said Liam has been putting weight on his feet, which is a very good sign.
“The doctors thought they might have to remove more [of each foot], but we’re hoping since he’s putting weight on them he won’t have to go through that,” she said.
Liam will be able to walk with corrective shoes if no more tissue and bone are removed from his feet. Prosthetics would not be needed for his feet. He has also been adapting well enough with his hands that prosthetics may not be necessary there either.
Angela Young said Liam is still on track for a 3-year-old developmentally.
“He’s still medically on track and his personality hasn’t changed,” she said. “The only thing to learn to do is walking and adapting to use his hands without fingers. He’s really coming a long way with that already.”
They have him using play dough as a therapy tool for his hands, having him make shapes and feel the texture. He is also crawling and scooting around, finding ways to push his cup and toys with his knees when his hands are busy while crawling.
“It’s neat to watch him adapt to different things,” said Angela Young. “He doesn’t have to be told or taught.”
“We’re all adapting,” said Chris Young. “He’s just making it easier for us. Kids are resilient.”