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Amid an at-home nurse shortage, parents of special needs kids struggle to find help

The Knight's have turned their dining room into a makeshift NICU
Posted at 5:24 PM, Oct 01, 2021
and last updated 2021-10-03 15:15:57-04

ERIE, Colo. — Gary and Kathryn Knight have turned their dining room into a makeshift NICU.

Their 6-month-old baby, Olivia, needs constant care and attention. Born at 27 weeks, she has an oxygen and feeding tube to keep her stable.

"We've been trained on this, but we didn't go to school for multiple years. We're not professionals," Kathryn Knight said. "We just are doing the very best that we can."

The family moved from Oregon to Colorado because of the special needs NICU care unit at Children's Hospital Colorado. Because of the attentive care and the improvements Olivia made at the hospital, they were able to take her home in September.

"They have a 28 step program to get us home to make us feel as comfortable as possible to care for Olivia on our own," Gary Knight said. "We would have felt much less comfortable coming home without that training."

But at-home care comes with a major hurdle, one that has grown more difficult since the coronavirus pandemic. At-home nurses are almost nonexistent to assist newly adjusted parents of special needs children.

"Sleepless sleep is a good way to describe it," Kathryn Knight said. "We have been home a month, and she requires an awake caregiver at all times."

The couple takes turns nightly to care for Olivia. Gary Knight stays up until 2 a.m. and Kathryn Knight covers for the rest of the night. It is barely manageable at the moment with the two switching awake shifts during the night and day to care for Olivia.

When Gary is due back at work in November, they say that stability will go out the door.

"Right now, with Gary being on paternity leave still, it's manageable," Kathryn Knight said. "At the end of this month, he starts working again, and then it becomes unmanageable."

Desperate for medical assistance, the family reached out on Facebook and on a personal website they created. The Facebook post has been shared more than 500 times, and the couple says they have now found some positive connections.

"We've had some nurses who have actually expressed interest," Gary Knight said. "We didn't really have any leads. Now, all of a sudden, we have a community kind of rallying behind Olivia."

As the nurse shortage continues to intensify across the country, Kathryn and Gary Knight hope their post can shine light on a growing issue.

"They say it takes a village," Kathryn Knight said. "It really does to raise a healthy child. It definitely takes a lot of help."