By Maureen Gilmer, IU Health senior writer, email@example.com
Alex Cruse was living the life of a teenager – going to school, working at Taco Bell and hanging out with friends.
Over the summer, all of that changed. Alex came so close to dying that his mother almost can’t bear to talk about it. Now, he sits beside her at Riley Hospital for Children, meeting a therapy dog named Gus and relearning how to speak through a trach and swallow without choking.
But he is alive and recovering, thanks to the gift of a transplant and the medical team at Riley who never gave up on him.
Michelle Cruse was having lunch with her son July 26 when she noticed the whites of his eyes were yellow. A licensed practical nurse for more than two decades, she knew something was up and got him in to see the doctor right away.
The next several weeks were a whirlwind, and those winds are just now beginning to calm as Michelle and John Cruse contemplate bringing their son home later this month.
Turns out Alex was suffering from an undetected autoimmune disease that was slowing killing his liver. By the time he made it to Riley from his home in Farmland, Indiana, July 27, his liver was dying and so was he. He went into septic shock, his mom said, and there was no guarantee that he would live long enough to get a liver transplant.
“We were in shock,” Michelle Cruse said. “I had my breakdown at the beginning. I sat on the bathroom floor, sobbing and begging God to save him. I knew the chances weren’t good.”
Within a day of being listed on the Organ Procurement & Transplantation Network waiting list, a donor matched with Alex.
“I was the happiest I’ve ever been in my life,” Michelle said. “But it kills me knowing somebody had to die for my child to live.”
On Aug. 2, doctors told Alex’ parents that the liver should be arriving later that day, but they had to take Alex to the operating room immediately to remove his liver because it was, in effect, poisoning him. Once they removed his liver, he could survive for 18 to 24 hours, so the donor liver needed to arrive soon.
Michelle and John Cruse knew they were taking a leap of faith. But they really had no alternative, they reasoned.
It was a Hail Mary.
Twelve hours after removing Alex’ diseased liver, transplant surgeon Dr. Richard Mangus was back in the OR, completing the transplant with the donor liver. He cautioned the family that the next 24 to 48 hours would be critical.
That turned out to be optimistic in Alex’ case. He remained in critical condition for much of the next two to three weeks, while his care team, including pediatric intensive care physicians Dr. Matt Friedman and Dr. Alvari Tori, as well as multiple nurse practitioners, nurses and other specialty teams struggled to stabilize him and deal with his medical complexities.
“The doctors call him a miracle. They said he was the sickest transplant patient they’ve had who has survived,” Michelle said. “I can’t say enough about the PICU; they were just wonderful.”
Alex has dealt with anxiety and depression during his recovery, his mom said, and his spirits have been up and down as expected, but she is pleased that his Riley team is addressing all of his concerns.
“Riley has been amazing, everything they’ve done,” she said.
And that includes the daily therapy he receives in the inpatient rehab unit, where he has worked for the past five weeks to regain the skills he lost during the worst of his illness.
Physical therapist Makenzie Maurer said his remarkable progress is a testament to his inner strength.
“He can get up without assistance, his balance is getting better, his endurance is better. He is a very hard worker,” Maurer said, “and he is facing a lot of new challenges in his body all at one time.”
The two mesh well because both have playful personalities, she said, cracking jokes and teasing each other.
“We like to keep things fun through all the craziness.”
And there’s one more thing about Alex, Maurer said.
In a unit where every patient and parent is dealing with challenges, Alex “tries to bring light and joy to everyone.”
Doctors originally suggested Alex would be ready for discharge Nov. 21, but the high school senior asked them to move that up. His 18th birthday is Nov. 18, and he wants nothing more than to be home with his family and his dogs.
It’s a goal Michelle fully expects her son to reach.
“I told the doctors, ‘Tell him you want him to do something by Friday, and he’ll have it done by Wednesday.’ He’s always been determined,” she said.
Michelle is a vocal advocate for organ donation now, but she says Alex actually was ahead of the curve, choosing to become an organ donor when he went to get his driver’s license at 16. “What am I going to do with them if I die,” he said to his mom.
She believes that selfless act put him in a position to receive a lifesaving organ when he needed it.
“You put good out there, and it comes back to you.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, firstname.lastname@example.org