Abby and Richard Feistel describe their family through their Christian faith and roots in the south.
“Blessed for sure,” says Richard Feistel, describing his children.
They have three daughters and a son, filling their home with tiny voices, laughter, and sounds of lots of toys. Both youngest children have special needs. And the youngest, Jedidiah "Jed", was not expected to survive birth having a bladder obstruction, small lungs, and a high chance of failed kidneys.
It wouldn’t be until a preliminary ultra sound for a kidney transplant, that doctors would find masses on Jed’s liver- liver cancer. With both renal failure and liver cancer, Jed is one in a handful and would no longer qualify for an organ transplant. Jed has spent most of his life in the hospital, but was able to recently come home for hospice care.
As he progresses, his parents expect him to become weaker. Medications, twelve hour daily dialysis, and checking in with his doctor have become vital to his care and comfort. So has staying home.
“He knows that home is not the hospital,” says his mother Abby Feistel.
With an iPad, the family is able to let Jed stay home and connect with their long time doctor Katherine Twombley, a nephrologist at the Medical University of South Carolina, using an application to video conference. This saves the family a two and a half hour trip to see the specialist, and most of all prevents Jed from having any complications during the long commute, which has happened before.
Abby Feistel can hardly describe the opportunity to use telehealth during his hospice care, “It’s massively helpful.”
The ability to receive the same care without the risk, has kept Jed out of the hospital to date ultimately allowing Jed’s parents and sisters to enjoy the days they have left with him.
UPDATE: Jed passed away. Everyone at SCTA would like to extend our thoughts to this amazing family. Jed's parents have been incredibly gracious and inspiring people throughout this long journey. Jed’s life held much meaning for those at MUSC who were tasked with his care and those across the country who were inspired by his story. He was a fighter and his spirit will live on in the work done for others.