25 Year All Stars: Meet Ashlyn
To wrap up our year of All Stars, we’re excited to introduce a kiddo who no longer has a need for PHS services. After being decannulated and graduating from home care nursing, Ashlyn is living life at home with her parents as a happy toddler – an outcome we absolutely love to see for our patients.
An early start
Ashlyn was born nine weeks early, and health care professionals struggled to determine what was wrong at first.
“She actually got much better in the first couple weeks she was in the hospital,” remembered Leslie, Ashlyn’s mom.
After being trached at two months old and having a g-tube placed shortly after, Ashlyn still wasn’t improving and doctors decided to do a left lower lobectomy on her lungs. About two months after that procedure, and more than nine months after her birth, they were finally able to go home.
Alphabet Soup
BPD, PIG, ALE – these acronyms made it easier to list Ashlyn’s diagnoses. BPD, or bronchopulmonary dysplasia, is a chronic lung disease, PIG, or pulmonary interstitial glycogenosis, meant her lungs weren’t transferring oxygen from the arteries and veins into the rest of her body, and ALE, or acquired lobar emphysema, is a form of respiratory distress. Lastly, tracheobronchomalacia caused Ashlyn to have floppy airways.
Despite these diagnoses, having round-the-clock nursing available when Ashlyn first came home meant having a safety net for Leslie and her husband, Kosta.
“Having someone there who is trained and we can trust to watch her and react in an emergency was irreplaceable,” said Leslie. “We started out having nursing 24 hours a day, and then went down to 16, and eventually 13 as she improved.”
After being decannulated this past year, Ashlyn is completely free of home care nursing – a happy ending for everyone.
Separating roles
Leslie knew she needed to separate her work life from her personal life since the two suddenly had so much overlap – she works in the respiratory department at the hospital Ashlyn was being treated, and needed to go back to work while Ashlyn was hospitalized due to the duration of her stay.
“When I was at work, I was at work,” remembered Leslie. “And when I was with Ashlyn, I was her mom. There was always that grey area where the therapists come in, and it was hard because I would have to remember these are my co-workers and I needed to be cautious of how I interacted with them because I have to go work with them tomorrow, but this is also my child. So it’s just kind of a balance. I treated it almost like a mental block – this is my work brain, and this is my mom brain.”
Not that button!
One of Leslie’s favorite stories comes from Ashlyn’s pulmonologist suggesting the idea of taking her off the vent for the first time.
“He was fiddling with the settings on the vent,” remembered Leslie. “He’d take her down a little bit, and then he had a monitor in place to see how her respiratory rate was, and then he’d take her down a little bit more, and would watch for a bit but not really say anything.
“And then all of a sudden, without saying anything, he just took her off the vent and shut it off. Kosta goes, ‘no not that button!’ – but that began the weaning process to get her where she is today.”
Naked neck club
Today, Ashlyn has been successfully decannulated and is a proud member of the naked neck club. She’s a fighter, a book reader, and a Mickey Mouse fan. And as a girl who loves her independence, she has a big future ahead filled with all the stories she creates.
Originally published: December 2, 2015