As young daughter works to hurdle health issues, Ethan family stays positive
ETHAN — While continuing to search for answers to their toddler's ongoing health problems, an Ethan family is thankful the answer hasn't been in some of the tests performed.
"You want answers, but the things they're testing for now are kind of scary, so you really hope they don't find anything," Abby Storm said last week.
Storm's daughter, Nora, suddenly was lethargic in March 2018. The 1-year-old spent two days at Avera Queen of Peace Hospital in Mitchell before she was transferred to Sanford Children's Hospital in Sioux Falls. The Storms described Nora's first days at Sanford as "super-scary" and shared video of her lying limp, barely peeking at her parents as they spoke to her.
"That's how she was for 23 hours out of the day," Matt said.
Doctors there were perplexed and nearly discharged her, because every test they ran came up negative and they were treating her only with fever reducers, but a nurse there insisted more tests should be run. A spinal tap revealed Nora had been infected with meningitis — inflammation of the spinal cord likely linked to the infection that initially made her sick. She was put on intravenous antibiotics and received a blood transfusion for severe anemia and soon began to improve. She returned home after 14 days at Sanford.
Since then, Nora has become ill numerous times due to her weakened immune system. For months, the Storms struggled to get their already-petite toddler to eat, and when she did, she almost always vomited.
"We put food in front of her at all times, but she never wanted to eat," Matt recalled.
'Two steps forward, one step back'
Nora was 19 pounds before she became ill. She was 16 pounds for six months following her illness, and she weighed 18 pounds when a gastrostomy or "G-tube" was inserted into her abdomen for the couple to feed formula directly into her stomach in October.
"We put the feeding tube in, and she started to gain weight, but it got infected and she lost weight again," Matt said. "It's definitely two steps forward and one step back, but at the end of the day ... hopefully we're getting there."
Due to Nora's size and chronic nutritional concerns, four puking episodes warrant an injection of adrenaline, and any more is reason for hospital admission. Since March 2018, Nora has spent 45 overnights in hospitals, in addition to too many outpatient visits for IVs for her parents to count. In December doctors recommended the G-tube be removed and a gastrostomy/jejunostomy or "G/J-tube" be inserted, routing the formula directly into her intestines.
The anticipated same-day procedure resulted in a five-day hospital stay, because Nora vomited continuously following the surgery. By Christmastime, she was back at Sanford for another two-week stay, followed by another week at Mayo Clinic. During that stay, the Storms learned that the meningitis had shrunk Nora's pituitary gland, which releases hormones that control her growth, thyroid, reproductive system and stress responses.
"Once the pituitary gland shrinks it never comes back," Matt said.
Two months ago, Nora gained a pound and a half, but last month she hadn't gained, due to an infection at the site of her feeding tube. Those infections are common, according to her parents, and always present a setback. Wednesday, the family rejoiced in a one-pound gain for the month, revealed at a routine appointment. But she has only grown one inch in the last 13 months, and they anticipate the growth hormones, which typically aren't given until a child is about 3 years old, will be considered at her Mayo checkup next week.
"I'm hoping she doesn't have to take growth hormone shots for the rest of her life, but it might be something she takes for the next 18 years or something to get her to the proper weight and height, and then take her off it," Matt said.
His wife agreed, adding that they continue to remain hopeful that she will lose the feeding tube soon. Initially, doctors predicted she'd need the G/J-tube six months, then transition to the G-tube for six months, then keep the port in her belly for a year without needing it before removing it.
"We've talked to a lot of people whose kids were on feeding tubes and one day their kid just started eating food. We're just hoping that one day isn't too far away," Abby said.
For now, they continue about their life in their current "normal."
"If anybody has a kid with certain needs outside of 'normal,' you look at it from the outside and think, 'That's really got to be a lot of work,' but when you start doing it every day, it just becomes part of your life. In the morning, you get four syringes ready. ... It's what's normal to us," Matt said, joking that it's a lot like having a baby, but that, at 2½, Nora sleeps better than a newborn.
For at least 22 hours out of each day, Nora plays while a two-pound pump feeds $23 worth of formula into her gut. Making the most of her situation, Nora sometimes treats the machine like a baby, pushing it around in her doll stroller.
The Storms are grateful that some persistent research by Abby resulted in attaining a smaller pump that could be strapped to her back, allowing her more freedom. The first one she had was about the size and weight of a five-pound brick, and she wasn't strong enough to stay upright while wearing it. She still struggles early in the day, when the bag is filled with 32 ounces. The bag has to be "burped" often because the activity of a toddler can mean it is bumped and air bubbles stop the formula from flowing through the tubes.
While life can get a little crazy with Nora's health issues and the activities of her older sisters, Mya and Lexi, who both attend Ethan Elementary, the Storms focus on the positives and cling to the hope that their lives will one day be simpler again.
The Birth to Three Program recently evaluated Nora, but she didn't qualify for their therapies, because she tested intellectually as a 4-year-old.
"Physically, she's not there, because she has to be able to walk up and down steps when they're two without help ... but her legs aren't long enough to do that. She has to hold on to something because she can't lift her leg up that high," Abby said.
Often, kids who have been as sick as Nora suffer physical disabilities, including hearing or vision impairment and/or cognition, dexterity or mobility problems.
"Her eyesight is there, her hearing is good, and she's smart as a whip, so we are super happy that all we've got to deal with is trying to get her to grow," Matt said. "You hear a lot of different horror stories — it could have been way worse."
And they are grateful for adequate health insurance coverage. Just a month before Nora fell ill, the family had transitioned from traditional health insurance to a Christian cost-share model, and they were nervous that there may be a waiting period before others' $500 contributions would start to cover Nora's needs. But contributions started flowing in quickly, along with notes of encouragement and prayers.
"We hadn't even written our first $500 check," Matt said, so accepting the personal checks of other participants can be humbling, and paying a $100,000 hospital bill $500 at a time can be a bit intimidating.
But the medical providers are familiar with their form of insurance, which required them only to pay the first $300 of Nora's expenses, as that is their deductible for each "occurrence." In addition to Samaritan Ministries, Nora's $675 worth of formula is covered by the Women, Infants and Children program, because she qualifies as a disabled child until she is three, and they are hopeful that Medicaid will pay for the $1,000-a-month growth hormone injections, should she need them before she turns three in November.
"As of right now, we don't really pay for a ton of it, but that'll (soon end)," Abby said.
Matt, a farmer, said the couple is prepared to do what is necessary to keep Nora healthy.
"I'm not worried at all about paying for the formula and this thyroid stuff," Matt said. "I hope that our insurance will help pay for the $10,000 a year for the growth hormone. ... If they would pay for that, then paying $25 a day for the formula and all the other stuff isn't such a big deal."
Abby added that they are grateful for the financial and logistical help of their community. A benefit was held for Nora and another family facing medical trials earlier this month, and family and friends have rallied around them when they have been torn between caring for Nora, being there for her sisters, tending the farm and keeping up with Abby's job as an accountant.
"Thank God we live around here," she said. "Everybody supports everyone. I don't know what I'd do (if we lived someplace bigger). I wouldn't be able to work anymore if I didn't have my mom right here. There's no way a daycare would take her with all this stuff going on."