If it weren't for Hopelink, the Redmond-based agency that helped her get the apartment that's become her baby boy's personal intensive-care unit, Sarah Eilertsen, 28, might have ended up in a homeless shelter.
One-year-old Lucas Eilertsen is wired. One line, attached to a tiny foot, feeds into a machine monitoring his heartbeat, another to his throat, monitoring breaths per second. One tube supplies food and another oxygen.
The hum and shush-shush of medical equipment fill the tiny living room of the Redmond apartment where his mother, Sarah Eilertsen, holds him and rocks. Hour after hour. Day after day. Week after week. Lucas’ survival depends on the oxygen tank, stacks of plastic tubing, monitors and ventilators that fill the apartment.
If it weren’t for Hopelink, the Redmond-based agency that made it possible for her to get the two-bedroom apartment she’s turned into Lucas’ personal intensive-care unit, Eilertsen, 28, might have ended up in a homeless shelter. She was familiar with shelters, having volunteered in one as a high-school student, but she never thought she’d face living in one.
She has family in the area, but Lucas’ birth came just as her parents were divorcing and her mother was selling the family home, which was bursting with other extended family members, as it was. No one — least of all Eilertsen — thought she would be coming home from the hospital with a critically ill baby who would make it impossible for her to return to work and would require nursing care and extensive life-support equipment 24 hours a day.
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Despite Lucas’ severe disabilities, Eilertsen treats him as any other baby, reading to him, assuming he can understand. She gave him a party for his first birthday and decorated the apartment with blue-and-white streamers and balloons and a very early Christmas tree, “because Lucas likes bright lights.”
“She’s an exemplary mom,” Gloria Eilertsen said of her daughter. When Sarah learned of Lucas’ condition, “it was devastating.”
Gloria Eilertsen thought of “the responsibility Sarah would have as a new mother, how it would change her life. She’d not only be a mom but a nurse … She is giving Lucas the best life she can give him.”
Sarah Eilertsen can stay in her tidy, two-bedroom Hopelink apartment until she’s able to be self-sufficient. Given Lucas’ needs, no one knows how long that will be. The apartment is one of 100 such transitional housing units that Hopelink offers, said agency spokesman Glen Miller.
The waiting list for housing is long, he said. Last year, Hopelink turned away 84 families a month. This year, that number is 127 a month. To qualify for housing, families must be financially needy.
Sarah Eilertsen estimates that on the open market the apartment might rent for $1,200 to $1,400 a month. But she pays Hopelink about 30 percent of her income, or $236 a month, for the apartment, which includes water and electricity but no frills, such as telephone, cable TV or a washer or dryer.
Her mother picks up her laundry since Sarah rarely is able to leave the home. Eilertsen lives on less than $800 a month, from a combination of Social Security and state Department of Social and Health Services (DSHS) benefits. She has other expenses, such as diapers, and often has medical prescriptions that for various reasons are not covered by insurance.
Before she had Lucas, Eilertsen was a self-supporting barista with her own apartment. Then she got pregnant and her relationship with her boyfriend ended.
After an uneventful pregnancy she went to the hospital, expecting to deliver a healthy baby, but her amniotic fluid was low.
Suddenly, the planned normal delivery turned into a cesarean section. When she awoke and asked for her baby, she learned that he’d had to be resuscitated several times and that he ended up with brain damage and severe cerebral palsy and was unable to eat, breathe or move independently.
She was nearly overcome by the grave responsibility of caring for such an ill infant. Lucas’ doctors and nurses trained her to do a variety of nursing tasks, including nasal-pharyngeal suctioning, which entailed running a tube through his nose into the back of his throat.
“I cried just doing it,” she said. “I’d walk out of the training session and couldn’t focus. But … I knew I needed to be able to take care of Lucas.”
When she and Lucas weren’t staying at Seattle Children’s, they stayed at her mother’s house until Hopelink stepped in.
The other day, Lucas began vomiting. Eilertsen was alone, turned him on his side and began suctioning him to prevent liquid from entering his lungs. Then he began to turn blue and stiffen. The ventilator wasn’t helping, so she resorted to using a handheld resuscitator to force air into his lungs, while at the same time trying to monitor his heart and keep him from aspirating.
She called 911 and he was taken to Children’s, for the 16th time in the past year.
Even in the hospital, she checks the medical equipment and suctions his airway, notes his breaths per minute and heartbeat, the vital signs that make a difference between her baby living or dying.
She worries, too, about the weather forecast since storms and power outages mean having to evacuate to a place with electricity to support the medical equipment.
While Lucas has dramatically altered the life she once knew, she said: “I’m so thankful for him. I’m thankful for every minute I have with him.”
Eilertsen now has 16 hours of daily nursing-care help from DSHS, but if she left Lucas completely in the care of the nurses, it would be considered respite care, something the state does not pay for.
It leaves her no time to visit friends. No time to shop or get a haircut. Bringing him along is cumbersome — it’s nearly impossible because of all the life-support equipment — it exposes him to the risks of disease.
While she has friends who could baby-sit, Lucas has such complex medical needs that his survival depends on having skilled nurses, or his mother, around 24 hours a day. His grandmother says she’s taken classes to be a backup but since she works and has other responsibilities, it’s often difficult to be there when needed.
In the meantime, the nurses who come to Eilertsen’s home have become good friends, often bringing pizza.
“She does a good job of always being thankful for all the things she does get,” said Margaret Linde, one of the registered nurses assigned to Lucas’ care. “She really depends on other people … and she goes above and beyond to be super mom.” As Linde picked up a green frog and danced it toward Lucas, who as usual was in Eilertsen’s arms, he smiled faintly.
“He loves his green froggie,” Eilertsen said. She insists he likes Burl Ives’ Christmas music, Hawaiian songs and George Strait, because his eyes seem to move in the direction of the sound.
With therapy, Lucas may eventually be able to swallow on his own and that would make it possible for him to be free from the gastrointestinal tube. But because his brain damage involves all motor functions and cognitive skills, his life will always be dependent on medical equipment, his mother said.
“I pray every day that he’ll be a normal boy and be able to someday play and laugh and run in the mud,” she said, kissing his hair. “His brain doesn’t give the right signals, so they don’t give us much hope.”
Since doctors say his life may be short, or as long as 20 years, it’s hard for Eilertsen to make plans of her own. So day after day she rocks him, suctions him, watches the monitors.
“I love him so much. I hate to see him like this,” she said.
“We need to be thankful we can walk. We need to be thankful we can talk. We need to be thankful we can use our hands,” she said. “I look at Lucas and think every day is a blessing.”
Nancy Bartley: 206-464-8522 or firstname.lastname@example.org. On Twitter @BartleyNews.