Steve and Gayle Koochin believe their 6-year-old son, Jesse, is a small miracle away from recovering from a brain tumor and its aftermath.
Doctors at Primary Children's Medical Center say he is already dead.
His small chest rises and falls steadily but only because he's on a ventilator, something doctors had intended to turn off Wednesday afternoon, until a judge issued a temporary restraining order to stop it.
Third District Judge Sheila McCleve signed the order prohibiting the hospital from removing Jesse from a ventilator "except at the direction of the court," the document reads.
The judge also ordered the hospital to continue providing "prescribed medications and intravenous fluids, medications and nutrition."
Additionally, McCleve stopped the hospital from declaring Jesse dead "without having an EEG test and/or blood profusion study (for brain activity) performed as approved by the minor's parents."
A hearing to decide whether the temporary restraining order should remain in place is set for Oct. 27.
The court order also released Jesse to his parents' custody and permits them to take him from the hospital.
"We're just very pleased we were able to help this family do whatever they felt they needed to do to save their child," said Stacey Schmidt, attorney for the Koochin family.
"Regardless of the medical opinions, this family has been through a lot," Schmidt said. "They've seen miracles with this child. They believe they should be permitted to continue to provide care for the child in the way in which they see fit.
"They just want to take him home and love him."
Jesse's medical journey has taken him to hospitals in three states and to Mexico, where he underwent treatment not available in the United States. At one point, his father said, he was in a coma and the family was told he wouldn't live a week. But he responded to the treatment in Mexico, Koochin said.
He did not, however, recover. And three weeks ago, the family moved to Utah so a local doctor could provide alternative treatment designed to rehabilitate his immune system. The boy was so ill, however, the doctor sent the family immediately to the emergency room at Primary Children's Medical Center.
He has been in Primary Children's since Sept. 15, diagnosed with incurable terminal brain cancer, said Dr. Chris Maloney, associate medical director for medical services at the children's hospital. In those three weeks, the size of his tumor more than tripled, Maloney said, and on Sunday Jesse's brain stem was pushed down through the base of his skull.
Maloney said that two separate doctors, following rigorous protocols on different days, declared the boy brain dead. His brain has, in fact, begun to liquefy, Maloney said. "Decomposition is occurring. Eventually, it will lead to cardiac death. His heart will stop."
Tuesday, doctors decided to take the child off all intravenous liquids and told the family that he would be removed from life support at 4:30 p.m. Wednesday.
"What really hurts," Steve Koochin said, "is they told us they would let us try to find another (facility) to take him to. Then four hours later they said it's too late, we can't move him."
Schmidt said because of the urgency of the Wednesday deadline, the family was racing to find another place for the boy, perhaps hospice care, and will keep working on that. However, Schmidt said the Koochins know how to provide a substantial amount of medical attention at home and have done so in the past.
"They are trained to do this, and the child was in worse condition several months ago and he recovered," Schmidt said. "The plan is to get him out of Primary Children's, but provide the IV, pain medication and keep him on a ventilator."
The family maintains the boy was in similar grave condition before, during his coma, and by a miracle came out of it, with the alternative treatment. They believe it can happen again.
Asked about that, Maloney was blunt. "I don't know what state he was in previously. He could not come out of this."
Koochin said he asked doctors to do an EEG. It would take that flat line, with no brain activity, to convince him his son is dead, he said. But the doctors declined to run the test.
Hospital staff said they had earlier offered an EEG and the family declined. After he had twice been declared brain dead, there was "no point" in repeating the test.
The Koochins, who have three other children ages 10, 15 and 18, spent Wednesday talking to reporters Steve Koochin had contacted and hiring Schmidt, then rushing to get a court order. In interviews, they described Jesse as a "beautiful, perfect little boy" who loved to swim and who was both joyous and playful.
Even at Primary Children's, some alternative treatments requested by the Koochins have been part of the regimen, Maloney said.
"The care of Jesse has been difficult since his arrival," he said. "It was determined through numerous examinations and review by a number of specialists that there was no appropriate treatment for his tumor. We have provided care for him as long as we could provide treatment that was of any benefit. When it was determined that he was brain dead, there was no longer any beneficial treatment we could provide.
"Physicians worked with Jesse's parents to provide some of the alternative treatments they wanted for their son. The family also requested we provide intravenous vitamins, minerals and salts, which we agreed to do," Maloney said during a news conference Wednesday afternoon.
The hospital turned down requests to give intravenously medications that were made to be taken orally, Maloney said.
The decision to disconnect life support is never a happy one, he said, but the hospital tried to be compassionate.
"The death of a child is the most difficult circumstance any parent could have to experience. As a father, I don't think I can even understand the pain I would have in a situation such as this. Unfortunately, even the best medical care cannot save every life," Maloney said.
"The hospital staff usually allows a family some time to come together and be provided support in this difficult time. That time is usually a few hours. In this case the family was offered 24 hours."
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