Home sweet home. Johnny Rogers talks with his son, James in James’ bedroom Wednesday. A heart transplant patient whose surgery encountered complications, James Rogers came home last week after a 127-night stay at Children’s Hospital in Little Rock.
Best buds. James Rogers (left) hugs his brother Matthew. The brothers, who are close, were separated for several weeks while James Rogers was in the hospital for a heart transplant.
On the mend. James Rogers lays on his bed Wednesday night while a machine conducts 10 hours of dialysis. Rogers’ kidneys failed after an accident during a heart transplant surgery and he will soon need to undergo a kidney transplant.
Look around James Rogers’ bedroom you see any number of things you would expect to see in the average 14-year old boys room including, Duck Dynasty memorabilia, posters for sports cars, a video game system and outdoors equipment and tools.
Without having to look too closely you’ll also notice a plethora of medical equipment, most of which was a condition for Rogers getting to come home last week after a four-month stay for a heart transplant in Children’s Hospital in Little Rock.
Equipment aside, Johnny and Tammy Rogers say it’s worth it, and worth storing a lot of the equipment in another room, to have their son, an eighth grade student at J.D. Leftwich High School in Magazine, home. Even in an era of highly successful transplant surgeries, it was questionable if James would ever leave the hospital.
James’ transplant was nothing that would resemble routine.
“There was an accident during the surgery,” Johnny said last week, choking back tears. “They told us there was a chance of the aorta being cut he would probably die. And the aorta was cut.”
Passing the time in the waiting room, the family was unaware of it then, but they were later told James was more than 20 minutes without oxygen.
“He was terminally dead for 20-something minutes,” Johnny said.
That usually spells brain damage, but that is not primary amongst James’ widespread issues. Though with a raspy voice, James communicates rather well.
Johnny said a higher power has been at work.
“A neurologist came in and told us it wasn’t anything of this world,” said Rogers. “There is no recovery from what happened mentally. Basically they told us it was from God. It wasn’t from man.
“We believe there’s a plan.”
“God answered a lot of prayers for us,” Tammy adds.
Nonetheless, having survived procedure after procedure and still very much alive, even with life support, a life already filled with time in medical facilities since being born with a congenital heart defect, James was then, and still is, subjected to even more.
“He had a brain bleed. He had several strokes,” said Tammy. “Eight weeks ago they wanted us to pull him off the machine and let him go.”
The answer was no, he had come too far.
The journey from childbirth aside, the latest fight for life began when James was sent to Children’s on Sept. 24 to await a heart transplant — Tammy said her son’s health had been rapidly deteriorating for about nine months at that point.
On Sept. 28, the family learned a donor heart was on its way. It was surreal.
“We had known for 14 years, but we were really not ready,” said Tammy. “We didn’t know he was a sick as he was.”
“God’s taken care of us, in more than one way,” Johnny adds. “And He keeps on taking care of us.”
Following the complications of the surgery, James remained “open” — his chest cavity was exposed — until almost Christmas. That was because the first attempt to close the cavity resulted in problems and forced the cavity to continue to be open.
During one stretch of the ordeal James could not have no oral intake of nutrients. Now, liquids must be thickened or he cannot have them.
Besides the strokes, James had kidney failure — the equipment in his room includes a dialysis machine to which he must be connected for 10 hours every night — he can no longer walk and one of his lungs has stopped working properly because of plastic bronchitis, which necessitates breathing treatments.
James will need a kidney transplant next, but the surgery room is one he is getting to know well. Starting with the initial transplant, over the last four plus months he has been subjected to 24 of them.
In the meantime James came home with a medicine schedule that includes a regimen of steroids — which have caused a puffiness in his face — pills and treatments at 8 a.m., noon, 5 p.m. and 8 p.m., as well as weekly therapy visits to Children’s in Little Rock.
The schedule is precise. Some medications come with food restrictions before and after ingestion, some prohibit and or demand specific fluid intake.
The therapy visits are the only time James will be allowed to leave his home for at least six months, if not a year, Johnny said.
Still, even to get their son home, Tammy had to be trained on how to operate the dialysis machine, how to do CPR and undergo a number of transplant classes.
She admits she couldn’t resist calling to double check everything the first couple of nights and she is paranoid when the machine sounds one of its alarms.
An alarm could merely be to inform users of a restriction. The 14-year old James kinked a line to try to instigate the alarm to see his mother’s reaction last week.
After all he had a visitor. Those, like reasons to leave the home, are few and far between, but that is somewhat okay since he now has his little brother Matthew in the same home.
“He cried so much at the hospital. He said he needed Matthew,” said Tammy. “They’re very close.”
Following the coma nobody under 16 was allowed in James’ room, which allowed sister Kandace and brother Adam access, but left Matthew in a waiting room somewhere when the family was able to get together.
A one hour exception was made for Christmas, which James says was stretched almost to two hours before it had to end.
Tammy spent 120 of the 127 nights her son was in the hospital in the facility as well. Johnny, a mechanic who works on pipelines throughout the country, came in when he could and when things were at their worst, necessitating air travel or hours behind the wheel.
While time seemed to stand still through the ordeal, now it seems to be in fast forward.
“The days go by quick,” said Tammy Wednesday night. “Today we knew he had to be on dialysis early because we had to go to Little Rock tomorrow. I looked up and it was 6:15.”
Among the things James brought home with him from the hospital was a T-shirt for “Team Skyler,” another heart transplant patient who had a more routine stay before going home.
Tammy said she plans to have one created for her son. While he was a way many classmates in Magazine wore special made rubber-band bracelets with James’ name and a heart printed on them, some of which are still available.
Besides the equipment in his room and all that kept elsewhere, there is another reminder of his stay in the hospital hanging on from a bed post: chains and chains of beads, over 1400 of them, Tammy said.
“And each one tells a story,” she said.
For example, one strand has hearts and square lettering spelling Rogers and representing his surgeries, another is rainbow colored and represent therapies, others are courage beads.
“There are 127 yellow ones,” James said. “For every night in the hospital.”