Life a challenge for parents of stricken infant
As if taking care of an infant weren’t enough work, Saige Blotske presents her parents, Trevor and April, with challenges few could fathom.
Saige, whose physical problems and her family’s battle to continue to get funding for her care were reported yesterday in The Aspen Times, breathes through a tracheal tube in her throat and must have oxygen treatments every three hours just to stay alive. She eats some of her food through her mouth, but after spending 141 of her 408 days in the hospital, she still relies on feeding tubes that connect into her stomach.
Saige, who suffers from a rare genetic disorder, is wired to a monitor that measures oxygen intake and heart rate, and her parents need to be nearby at all times in case it blares out a signal that something is wrong.
“I was angry at first,” Trevor admits about his first reaction to Saige’s health problems. “I wasn’t too happy about Saige’s problems. She was supposed to be our perfect little baby.”
“There was a grieving period when I mourned the perfect baby I was expecting,” adds April.
But Saige isn’t lying in a bubble in the intensive care unit at some hospital. She’s at home, where Trevor says he has come to know and love his daughter. And in between feedings and breathing treatments, she’s learning to behave a lot like a normal baby – lifting her arms up and down and moving her gaze around the room in search of something to stare at. In fact, April says, Saige rolled herself over for the first time last week.
“I wasn’t home, but it sure surprised April,” Trevor says.
Trevor and April have been able to cope with their daughter’s challenges because of the nurses who have spent most of each week in their home since late September. Saige is attended to by nurses all day for three days a week. Four days a week April and Trevor take care of her during the day and nurses watch her at night.
Trevor, who installs utilities for KN Energy, says the days when the nurses are gone have let him get to know his daughter, while the days the nurses are around have let him stay in touch with his wife. “On those days, we’re able to put our problems aside and talk to each other,” he says.
But that is all threatened now that the company that pays Saige’s nurses is dropping the Blotskes. Home Health of the Rockies announced last Wednesday that it plans to cut off nursing services beginning Dec. 25, and Valley View Hospital told the family a day later that it wouldn’t assist with the home nursing or admit Saige for long-term care. That means Saige may end up in a hospital on the Front Range, or even outside the state.
Saige was born Nov. 1, 1998, with Apert syndrome, a rare genetic condition that afflicts approximately 1 of every 160,000 newborns each year, according to the Web site at the National Biotechnology Information Center.
Victims are born with severely deformed skulls and sunken facial structures that require years of intensive surgery to keep the child alive and correct physical disabilities. Many babies with Apert syndrome are mentally disabled, but many are not. Most are born with fingers and toes that are fused together and require several operations to separate, according to another Web site on the condition.
Today, at thirteen-and-a-half months, Saige wears a pair of casts on her feet to protect her newly separated toes from the wear and tear of everyday infanthood. They are the most benign signs of Saige’s ordeal in life, and perhaps the easiest of all her ailments for her parents to deal with.
Doctors in Glenwood Springs, Denver and Dallas have operated on Saige 12 times in the last 13 months to deal with the problems that come with Apert syndrome. And they will need to keep operating on Saige for several more years before her life has any resemblance to that of a normal child.
But there is hope that Saige will have that life. It’s still too early to tell whether she’ll have normal intelligence, or overcome some very serious physical problems, but if things work out she might end up in kindergarten about four or five years from now.
“It hurts me to think about when she gets older and kids will make fun of her,” Trevor says. “It’s going to be tough.”
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