For many patients and their families, a stay in the Pediatric Intensive Care Unit (PICU) can feel like a long journey, one filled with many procedures, emotions and milestones, that can be difficult to track along the way.
That’s why Akron Children’s offers the PICU Patient Journal, a tool for patients and families to document their stay, organize their information and express their feelings through creative prompts.
“Parents with kids in the ICU need an outlet to write down their thoughts and questions,” said Kalyn Seislove, a critical care nurse practitioner in Akron Children’s PICU. “There’s a lot of good information on post-intensive care syndrome, which is essentially post-traumatic stress disorder after being admitted to the ICU for a critical illness, and this may be one way to help prevent that.
“For some patients, they often can’t remember what’s happening to them, so this journal is an opportunity for their family or our staff to document those milestones for them,” she added. “We might write down, ‘You got your breathing tube out today,’ or ‘You got up to the chair today.’ You might not remember that now, but six months from now, this is your way to look back and process something that you were not able to in the moment.”
For Wendy McNair and her daughter, Madelyne Williams, age 20, the journal has served as a helpful outlet for creative expression and art therapy.
Madelyne, who has cerebral palsy and other complex medical needs, has been admitted to the PICU multiple times within the last year.
“We’ve had some tougher, longer stays recently, so I’ve been trying to use the journal more,” said Wendy. “Maddie uses the coloring pages, which helps to keep her mind busy, so she’s not concentrating on being sick. It helps to keep her mind occupied.
“If she’s sick or intubated, I try to do those pages for her,” added Wendy. “It helps me pass the time. I try to think about what she would like to do, and when she wakes up, I show her what I drew, and it makes her happy.”
During her stays, Madelyne also works with the hospital’s Expressive Therapy Center to paint natural scenery, including waterfalls and forests. “She’ll work with Narrative Medicine to write about her painting and what’s on her mind,” said Wendy.
The journal has also been a helpful tool to keep track of her admission and discharge dates for follow-up appointments. “It really helps to keep everything organized in one spot,” Wendy added.
The PICU launched the journal in 2024, and Kalyn said the feedback from staff and patient families has been positive.
“For me, this journal is my way to bond with families,” said Kalyn. “It’s my way of saying, ‘I know this is a really hard experience for you, and I want you to feel supported while you’re going through this. Here’s a great tool to help you process what you’re thinking and feeling. It’s a safe space to help you debrief.’”
