Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: FRIDAY, March 23, 1990 TAG: 9003231769
SECTION: NATIONAL/INTERNATIONAL PAGE: A1 EDITION: METRO
SOURCE: CHARLES HITE STAFF WRITER
DATELINE: WINSTON-SALEM, N.C. LENGTH: Long
His eyes are shut tight, his face is contorted, his mouth is open wide, his chest heaves, and his hands - balled into tight fists - flail above his head. Tears trickle down his cheeks.
But Andy's screams cannot be heard. A surgically implanted breathing tube in his windpipe prevents any air from reaching his voicebox.
"He's been fussy all morning," says Cornelia Fox, a nurse in the pediatric intensive care unit at Bowman Gray/Baptist Hospital Medical Center.
Fox and the other nurses on the unit are accustomed to the muted sobs of children on breathing tubes. But Andy's prolonged fidgeting worries her. A tape of soothing instrumental music usually calms him, but not this morning.
An alarm on one of the monitors blares. Fox whirls and stares at the digital readout of Andy's heart rate. The numbers drop quickly: through the 80s and 70s and into the 60s.
"Don't do this to me, baby," she says. Fox grabs a black air bag and snaps it on Andy's breathing tube. She squeezes the bag with both hands.
Andy's body stiffens. His skin is a pale blue.
"Ellen!" Fox calls for Ellen Myers, the charge nurse for the unit, who comes rushing into Andy's room. "He got down to 60," Fox tells her.
The numbers on the digital readout are now zooming upward. Andy's heart rate soars to nearly 220.
By the time two medical residents arrive, Andy's heart rate drops and his breathing eases. As one listens to Andy's chest with a stethoscope, Fox tells them what's happened.
They talk about adjusting Andy's level of seizure medication and order a chest X-ray and blood tests.
Fox calls Andy's mother, Sue Argabright, who's staying at a nearby Ronald McDonald House.
"Andy's OK now," Fox tells Argabright. She tells about the rapid drop and increase in his heart rate. "We think he's having seizures. It would help us if you could come over."
Eight minutes later, Argabright races into the room, leans over Andy's crib and kisses him.
"That's right," Fox says. "Come give him some sugar. This is the calmest he's been all morning."
"I don't need any more scares like this, Pumpkin," Argabright whispers to Andy a few minutes later.
Since her son's birth, life for Argabright has become a series of crises, medical and otherwise. At just 6 weeks of age, Andy was sent to the University of Virginia after his local doctor noticed an abnormally large spleen and liver.
It took UVa doctors 18 days to come up with a diagnosis. Andy, they discovered, was suffering from osteopetrosis, a rare and usually fatal bone disease.
The genetic condition prevents Andy's body from breaking down and reforming bone. As a result, bone marrow cavities - hollow tubes inside each bone where blood cells are made - begin to fill in. Bone deposits in the skull often compress nerves and lead to blindness and deafness. Eventually, most patients die from overwhelming infection because their bodies can't manufacture the blood cells necessary to fight infection.
UVa doctors said a bone marrow transplant was Andy's best chance to live. They began a search for a donor and told Argabright, who had no medical insurance, to begin raising money. The transplant could cost as much at $180,000, they said. Most medical centers require a deposit of $30,000 or more before they will perform a transplant.
In January, Argabright made a public appeal for funds. She had no job, no health insurance, and no husband. Andy was the baby doctors said she would never have. During 14 years of marriage, that prediction held true. But after her divorce, she became pregnant by another man.
Argabright sued Andy's father, claiming he refused to submit to tests that would show whether he was a suitable donor for bone marrow.
The suit got national attention. Argabright was interviewed by reporters across the nation and traveled to New York for an appearance on Sally Jessy Raphael's nationally syndicated talk show. She also made Star, a national tabloid with screaming headlines. "Mom sues lover for bone marrow to save her son's life," the Star headline proclaimed.
Within a week, the suit was settled. Andy's father submitted blood for the tests and was found not to be a good donor.
In the meantime, Andy's increasing problems with breathing resulted in frequent trips to doctors' offices and several hospital stays.
During one hospital visit in late January, Andy had several episodes of seizures and at one point stopped breathing. Doctors discovered he was blind.
The next day, Andy was on his way to Bowman Gray/Baptist Hospital Medical Center in Winston-Salem. With the search for a bone marrow donor going slowly, Argabright decided to let Andy undergo an experimental therapy for his bone disease.
Dr. Lyndon Key believes interferon gamma, a natural protein, stimulates the cells that help break down and remodel bone. For some reason these cells don't function normally in patients with osteopetrosis. Key theorizes that these cells are tied to the body's immune system, which in other studies has been shown to respond to interferon gamma.
After six weeks of treatment, Andy seems to be responding to the treatment. Sue Argabright anxiously awaits Key's arrival on the pediatric ICU. She knows that if recent test results look good, she may be able to take Andy home while he continues treatment.
"It's about as good as a response as we're going to get," Key tells Argabright.
He's referring to blood tests that doctors have been monitoring. Blood platelets - which help with clotting - and red cells - which carry oxygen - are among the first victims of osteopetrosis. When Andy first arrived, he needed massive transfusions to replace the platelets and red cells that he was losing to his disease.
But his platelet and red cell counts have stabilized in recent days and his level of hemoglobin - the iron-containing protein in red cells - has risen.
Also, Andy's enlarged spleen has returned to an almost normal size. The spleen becomes enlarged when it attempts to take over the manufacture of blood cells after bone marrow ceases to do the job. The dramatic shrinkage in Andy's spleen is a good sign that Andy's bone marrow is not being overtaken by bone growth from his disease.
The initial readings from a recent biopsy of Andy's bone also look encouraging. They indicate that osteoclasts - the cells that are critical in breaking down bone - are being formed. The big test will be whether the biopsy shows that Andy's bone volume is going down.
The results are promising enough for Key to continue Andy on the interferon for another five months.
A magnetic scan of Andy's head shows no improvement in his brain size but also no deterioration, Key tells Argabright. A test measuring electric currents in his brain shows some seizure activity and evidence of brain damage, he adds.
"Is there a possibility he might regain his sight?" Argabright asks.
"No," Key answers. But there is a good chance Andy's hearing loss could improve, Key adds. Evidence shows that his hearing damage is not due to nerve damage, he says.
"Can we set a date for Andy to go home?" Argabright asks.
A lot depends on what she has arranged, Key answers. Andy will need two monitors - one to measure heart rate, another to measure respiration, he says. Argabright will need some relief with nursing care - at least a few hours a day, Key says.
On top of that, he says, Argabright will need training. She must learn to suction secretions from the opening in his windpipe, to change the dressing on the tube in his chest used for giving medications, to feed him through the nasogastric tube, to give medications, to use the home monitors, and to give injections of the interferon gamma.
"From the standpoint of Andy's development, being at home will be very important," Key says.
But something has come up that will delay Andy's departure. Key wants Andy to have a gastrostomy, an opening from the abdomen to the stomach that is used for feeding.
It's important for Andy to consistently be gaining weight before leaving the hospital, Key says. The feeding tube through Andy's nose isn't working as well as Key would like. Andy weighs only 10 pounds, 8 ounces. With the gastrostomy, Andy also has the possibility of eating on his own. The tube in his nose now makes it difficult to swallow food.
The delay for the operation upsets Argabright. She asks how long he would have to stay after surgery. Key estimates it will be seven to 10 days. And it will take a few days to have surgeons evaluate Andy and schedule the surgery, he adds.
After Key leaves, Argabright begins sorting through the baby clothes stuffed in a drawer of a metal dresser in Andy's room. As she sets aside outfits that need cleaning or are too small, Argabright turns to nurse Teresa Tyson and talks about the decision to do the gastrostomy.
"I want him home," she says. "But I have to do what's best for my baby."
Argabright's last trip to Bowman Gray came at 2 in the morning as she drove her cantankerous 1979 white Pinto down twisting U.S. 220 through fog and misting rain.
She had been up late at her apartment in Roanoke. Something made her call to check on Andy. The nurse told Argabright that Andy had developed a fever and had stopped breathing during a couple of seizures.
Argabright stayed up with Andy for more than 24 hours, got a night's sleep, visited Andy again, then headed back to Roanoke.
During Andy's first two weeks at Bowman Gray, Argabright was a constant fixture in the ICU. Since then, she's trekked back and forth to Roanoke, trying to arrange fund-raising events and lining up nursing care if Andy should ever get well enough to come home.
Money has been scarce for Argabright. Last summer she gave up her job as a contact lens technician because her pregnancy with Andy caused severe water retention and swelling in her legs. Due to Andy's life-threatening disease, she has not gone back to work. She relies on $231 a month in welfare plus food stamps to support herself. She lives in a rent-subsidized apartment in Northwest Roanoke.
Some people have criticized her, Argabright says, for not spending more time at the hospital with Andy. But she says there are times she has to be in Roanoke. She's called radio and television stations, hoping to generate publicity and maybe even interest them in a telethon. She's pestered car dealers to donate vehicles for a raffle. She's talked to grocery stores about organizing "skip-a-lunch" days. She's asked hospitals and health care agencies to donate equipment.
Nearly $14,000 has been collected for Andy. Most of it came from contributions sent to the Botetourt Jaycees, which agreed to set up a fund to help pay for a bone marrow operation.
About $2,500 has been raised by friends of Argabright who own Dee and Doug's Rendezvous, a Roanoke restaurant and bar. Argabright says she plans to use that money to defray the costs of home nursing care.
Some money has come from more than 100 collection jars distributed to an assortment of businesses. But Tom Kirby, president of the Botetourt Jaycees, says those jars are being withdrawn because of problems in coordinating collection of the funds.
While Medicaid - the government health insurance program for the poor and disabled - will cover most of Andy's hospital bills, it won't pay for a bone marrow transplant, and its coverage for home nursing care is limited. Argabright's immediate goal is to raise at least $25,000 to $30,000. She says officials at the University of Nebraska Medical Center, where Andy was referred for a bone marrow transplant, told her that much might be needed to conduct another search for a donor.
Andy may not be a suitable candidate for a bone marrow transplant, Argabright has been told recently. But she feels she must go ahead and make plans as if a transplant will be possible. Otherwise, the money might not be there if it's needed.
"It's not out, it's just on hold," Key says of the transplant.
Key says the University of Nebraska physician who has been approached to do the transplant wants to get a better picture of Andy's mental status before deciding to do the procedure.
Andy clearly has "significant neurologic impairment," Key says. Andy's seizures and the extraordinary delay in his development are signs that his brain may be damaged permanently, Key says.
The degree of damage is difficult to assess because Andy is so young. Unlike normal 6-month-old babies, Andy is making no attempt to sit up, grab at objects or interact with his environment, Key says.
Some of the delay could be due to his blindness and the fact that he has spent much of his life in hospital intensive care units.
"We'll just have to wait and see," Key says.
An hour after Andy scared the ICU staff with his out-of-whack heart rate and shortness of breath, he's sleeping soundly.
Nurse Cornelia Fox has taken blood samples from his scalp and right forearm, cleaned up his messy diaper and given him a dose of Tylenol. An emergency chest X-ray is being developed.
Argabright asks what caused Andy's episode. Fox has two theories. A recent bout of diarrhea could have depleted his sodium and potassium levels. Or, more likely, the level of his anti-seizure medication needs to be increased.
While Andy rests, Fox gives Argabright a lesson in how to change the leads on his heart rate and respiration monitors. Never put the contacts in the same place, Fox warns, or it can burn Andy's skin.
"Remember, `white is right,' " Fox says as she shows Argabright how to clip the white lead on Andy's right chest.
When the lesson is over, Andy has some visitors. Jackie and Richard Haight have a 4-year-old son being treated for leukemia. Jackie Haight and Argabright met several weeks ago at the Ronald McDonald House and have become close friends. Before the visit is done, Haight scoops Andy in her arms, rocks him and coos softly.
"You really get attached to these children," Fox says as she looks around the nine-bed unit.
Andy's roommates include an 8-year-old with leukemia, a 6-month-old with congestive heart failure, a baby with meningitis, a 16-month-old with multiple heart defects, and a 1-year-old with Fryn's syndrome, a rare condition marked by seizures and a slow wasting away of the central nervous system.
"People ask, `How can you work here?' But they don't realize that a lot of these babies can eventually go home," Fox says.
Just a few days ago, a child who had been on a breathing machine for more than a year was able to leave.
The previous week, Andrew Hartley, a 6-year-old from Giles County, had to be put on a respirator after a severe lung infection. Andrew is special to the nurses on the unit because he has the same condition as Andy Moore. Andrew is the only other child to receive the interferon gamma therapy. He appears to have responded well although he has been plagued with immune system problems.
"We all become a big family at the Ronald McDonald House," says Anne McBath, whose daughter, Meagan, has Fryn's syndrome. "Andy has become my little boy and Meagan has become Sue's little girl."
After Andy's visitors leave, Argabright's lessons continue. She dons a mask and rubber gloves before Fox shows her how to change the dressing around the catheter in Andy's chest.
When that task is done, Fox gives her instructions on how to give medications through Andy's feeding tubes.
Argabright is suctioning Andy's breathing tube when Key arrives. Key believes Andy's seizure earlier in the day can be traced to an inadequate level of anti-seizure medication. He assures Argabright that Andy's platelet levels are fine. He agrees with a suggestion by Fox that the nurses try to wean Andy from the mixture of 30 percent oxygen mist that is attached to his breathing tube. The less support Andy needs in the hospital, the better it will be when he goes home, Key says.
Argabright's final lesson in Andy's care will be taught by Key. He wants to teach her how to give the injections of interferon gamma that Andy receives three times a week.
The injections are given just below the surface of the skin in Andy's thighs. Key fetches a small plastic device designed for patients to give themselves injections of growth hormone. Key has found they work perfectly for interferon.
He watches Argabright draw out a small amount of interferon from a tiny vial.
"OK, just sort of punch it in the skin," Key says.
Argabright squeezes the device but the medicine squirts out on Andy's skin.
"No, you have to punch the button down front so it will go under the skin," he tells her.
Key draws out another dose from the vial. Each vial can be used only once and would be worth about $700 if it were on the market, Key says. Fortunately, Key doesn't have to pay that because the interferon is an experimental drug.
Argabright tries again. This time the injection works.
Argabright has a late dinner with Marjie Hartley, the mother of the 6-year-old boy who also is being treated for osteopetrosis.
She gets a ride to the Ronald McDonald House, where she has arranged to share a room for the night with the mother of another child in the ICU.
Argabright wanders to the kitchen, chats a moment with a couple of parents, then heads for the living room and flops on the couch. She stares a few minutes at a television show about the life of pop singer Karen Carpenter.
She wonders out loud about how she will find nursing care for Andy if he ever makes it home.
After a few minutes on the couch, Argabright calls the ICU to check on Andy, then decides to call it a day.
On her way to the bedroom, she passes a bulletin board in the front hall that is plastered with candid photos of children in the hospital.
Argabright's eyes wander to a shot of a tiny, emaciated baby. He is a few months old but is so small that his diaper swallows him. He has no hair but his face is lit up with a smile.
Argabright sighs. "This little Pumpkin didn't make it."
by CNB