In June, Liam Miller’s mom thought she already had taken care of the most important thing to get him ready for kindergarten.
Because of an intestinal condition, her youngest needs a feeding tube in his belly 18 hours a day. At school, that means a nurse needs to constantly keep an eye on him and disconnect the tube before lunchtime so he can go play with the other kids.
So Krystal Miller took all of the necessary paperwork to school before summer break even began. A school nurse, a special education teacher, a caseworker and others from the Chicago Public Schools had helped determine in May that Liam would need a nurse for the first half of each school day — while he was connected to his tube. And they confirmed that one would be there.
Liam couldn’t wait to follow his older brother and sister to Oriole Park Elementary School on the Far Northwest Side. But when the little boy arrived for his first day of school — ever — there was no nurse.
Not the next day, either. Nor the day after that.
So each of those mornings, after sending his two older siblings in to class, his mother went to kindergarten with him. Most days since, she has had to stay.
Some days, there’s no nurse at all. Other days, it’s been one of an ever-changing series of fill-ins his mother needs to train on how to monitor his feeding tube.
So much for him learning independence, she says. So much for her being able to take care of the rest of the family.
“Every day that I show up there, and I’m waiting, I don’t know who’s going to be there,” Miller says. “I’m constantly going: Who’s going to show up? When are they going to show up?”
“Her only saving grace right now,” says her husband Lorin Miller, “is me working nights.”
Other families are facing similar situations because CPS hasn’t been able to provide enough nurses for the kids who need them.
Part of the problem was that, by the start of the school year, CPS hadn’t cleared all of the nurses it hires from outside agencies following the background checks that were put in place as the result of a sex-abuse scandal involving adults working with children.
But more than a month into the school year, parents complain there still aren’t enough nurses at school for kids with medical needs.
How many nurses has Liam seen so far? His mother has to stop and count. There was the one who didn’t show up, she says, and the rest of the math she does on her fingers.
In his first four weeks of class, six different nurses have cared for her son.
On Tuesday, a seventh showed up but couldn’t even say which kinds of feeding pumps he’s worked with, and he was supposed to be Liam’s permanent nurse but now won’t be, Miller says.
Nurses who are CPS employees say they’re constantly having to fill in because of vacancies or absences.
Some parents say nurses hired to come in from private agencies often don’t show up or quit or don’t know how to work children’s equipment. Their assignments are out of principals’ hands. Nursing services are overseen by the same CPS department that handles special education.
CPS has relied on nurses from private agencies for years, most recently from RCM Technologies, Inc., which has $30 million in nursing contracts with the city school system that go through June 30. It has been paid more than $23 million as of July 1, records show. CPS won’t say how much the international, New Jersey-based agency has been paid since then.
The number of nurses CPS directly employs went up this year to its highest since 2014 — to 335 for more than 500 schools, records show. But the rate of positions that were budgeted but not filled also rose.
Asked about Miller’s and other parents’ concerns regarding the outside nurses, CPS spokesman Michael Passman says: “CPS is hiring an additional 20 nurses and expanding the pool of nursing vendors to supplement current staffing. Senior CPS officials have been meeting with parent groups on a regular basis to help resolve concerns, and by bringing in more district-employed nurses and additional vendor support, we will improve the consistency of student supports this year.”
RCM representatives did not respond to numerous messages seeking comment.
The frequent turnover makes it hard for Liam to get to know and trust his CPS caretakers, his mother says. When she asks about this, Krystal Miller says, “I keep getting the same answer of, ‘I have X amount of schools that are dealing with the same thing. We’re trying to do as much as we can. We’re short-staffed.’ ”
“Well, on the short-staffing, too, it’s like . . .,” her husband begins.
“They’ve known this since June,” Krystal Miller finishes his thought.
Liam was diagnosed around his first birthday with a condition commonly known as shortgut. A section of his intestines don’t work. In those early months of his life, his body didn’t absorb enough nutrients from the little food he could keep down.
To his young parents, then living in California, who already had a 5-year-old son and 3-year-old daughter, the new baby didn’t seem ill, only to barf a lot. But after he ate, there was so much spit-up that his parents feared something else was wrong.
Liam’s development stalled as doctors there tried different approaches.
None worked. Listless, their baby was slowly starving.
By 10 months old, Liam weighed just 10 pounds. With one income and a child requiring his dad to miss a lot of work, the family was scraping by.
The Millers moved back to Chicago, to the same Far Northwest Side neighborhood where Krystal’s family raised her, to a city that’s home to Lurie Children’s Hospital.
To get Liam across the country, his doctors put him on a special, nutrient-dense formula fed to him intravenously through his chest.
The formula worked. Liam put on weight, tried to sit up, would scooch across the floor. He suddenly wanted to play.
Lurie doctors fine-tuned his treatment and medication, adding the feeding tube, which attaches above his belly button and snakes into his intestines. He flourished.
But he still was at risk for infection. Every sign of fever came with protocols to make sure he hadn’t caught anything dangerous. Before his second birthday, Liam spent weeks in the hospital with a bad infection that threatened his life. He was sedated for a week so he couldn’t pull out his ventilator while his body healed.
These are the moments that haunt his mother when there’s no nurse at school.
Liam’s tube could pull out of his tummy if it or the backpack that holds his pump catches on a desk, on the playground, on a friend. He needs a reminder about the backpack when he stands up. He needs someone to change him, to secure his tubes onto his wiggly body with wide bandages and a size 4T onesie.
He could lose precious pounds if the pump that provides his only nutrition stops, and no one catches it. And that could mean having to go back to the central line in his chest.
Krystal Miller rearranged Liam’s feeding schedule so that the six hours he’s off his tube fall during school lunch and recess. She doses his medications herself around 5 p.m. when he’s hooked back up.
Each morning, she packs extras in a bag decorated with a football. It holds tubing, a bag to catch any overflow, extra clothes and wipes. That’s the third bag Liam takes to school, besides his formula backpack and his beloved Avengers schoolbag.
Mom sits with Conner, 9, and Makayla, 8, as they eat breakfast, keeping them on task as they wipe their dishes and dress themselves quietly so they don’t wake their dad, still asleep after his shift as a fire-sprinkler fitter.
The older kids don’t ask for much help. They amuse their brother after he gets up, help him find his toys, laugh at his jokes.
Their parents worry about them, too, whether they get enough attention, whether they know they’re loved as much as their little brother.
“There’s a lot that we haven’t been able to do because of medical issues, like we’ve never taken them on a vacation or even trips anywhere,” their dad says.
His mom has spent so much time at school with Liam that housework and shopping duties had to shift to her husband. Lorin Miller also spent a day at school with Liam so his wife could meet with caseworkers about the special education aide he also needs.
This is all hard on the family.
“I can’t do things a mother that has three kids in school would do,” Krystal Miller says. “There’s so many things I cannot do because my son doesn’t have what he needs and what was already set in June.”
And Liam is supposed to be learning how to go to school on his own, without his parents around.
“He looks for me to do the things he’s supposed to be doing,” his mother says. “Me being there is kind of like a safety blanket. And, instead of getting him to learn new things, like being around more people, getting comfortable, learning how to cope in different situations, having me there, he’s not learning ways to cope with it on his own.
“And I can’t always be there for him to do these things for him. He needs to figure out how to do it on his own.”
How other families are coping
When outside nurses hired by the Chicago Public Schools don’t show up to care for children’s chronic medical needs while they’re at school, parents do whatever they feel they need to do to keep their kids safe.
Change schools. Step back from full-time jobs to working part-time so they can monitor their kids. Keep their kids home if no nurse is coming.
Crystal Arellano’s 13-year-old daughter Isabella Swiontek can almost manage her own Type 1 diabetes at school. But her doctor still wants someone to supervise the girl, especially while Isabella is going through a common adolescent phase — ignoring her disease.
A school nurse would enforce the instructions in Isabella’s medical plan: test her blood sugar before meals or gym at Jungman Elementary School in Pilsen and call her mother if the results are high.
Arellano says there haven’t been any calls even on days when her daughter’s blood sugar was high as soon as she got home from school. And though the principal is trained as the school’s diabetes care aide, instead a school clerk has been giving Isabella her insulin and signing off on that, Arellano says.
“You’re allowing someone with no diabetes history, no training, nothing, overseeing it?” she says. “I went in to school finally and took pictures of all the numbers and signatures, and it’s not the nurse’s signature. It’s the clerk.
“I understand the shortage. I try to be as empathetic as possible. But still it’s your child. And you’re trusting your child, their lives, in somebody’s hands — and they’re in charge of seven other things.”
Arellano works full-time in a dentist’s office, so she can’t accompany her daughter to school or pop in at lunchtime. She has considered moving Isabella to another school where she would be given constant nursing. But Arellano, the mother of seven, already moved her school-aged kids to Jungman, which is across the street from her home.
She’d settle for CPS getting formal training for the clerk or another staffer who’ll check on Isabella.
“I’m not a nurse,” she says, “and I’ve kept my daughter alive for five years.”
Long ago, Myra Young gave up on having CPS nurses for her 10-year-old daughter Celestia, who relies on a ventilator and feeding tube because of a profound muscle disorder that left the girl too weak to breathe.
When “Letty” goes to school, her mother sends her government-funded home-care nurse to Ogden International School on the Near North Side with her.
Young says the nurses CPS had sent to Ogden never had enough training on the equipment that keeps Letty alive. Should that gear fail, the fifth-grader couldn’t breathe. Someone must watch her constantly.
“You can’t wait for an ambulance to come,” Young says. “Unfortunately, my daughter would be dead. And I’m not being dramatic. That’s why it is so hard to find people who are actually trained to all of her needs. Sending an RN just isn’t going to do it.”
Young briefly sought nursing care from CPS when her daughter was in fourth grade, after the family’s private insurance began denying coverage for that. She says the agency nurses were unreliable, prompting her to go to school herself three days a week. She has asked CPS to hire her home-care agency, whose employees are familiar with caring for children with profound medical issues and who know how to administer Letty’s daily respiratory therapy.
The Medicaid-funded nursing costs the family nothing, and Young says it also saves CPS a fortune, which she fears might give school officials little incentive to solve the problem.
“Even if I just counted the days that I go,” she says, “I’m saving them tens of thousands.”
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• CPS manager advised nurses to cut back on services for diabetic kids, Sept. 24, 2018 • Nurses assigned to CPS students still sidelined, awaiting background results, Sept. 10, 2018 • One lapse after another at CPS school where boy with autism drowned, Sept. 8, 2017