May 10

Meet Windy – Mom and Nurse

For Mother’s Day, Windy Smith, a mother and nurse at UW Health's American Family Children’s Hospital, shares her poignant and heartfelt story. Windy’s daughter, Brielle “Ellie,” has Langerhans’s Cell Histiocytosis, a rare cancer disorder. Windy cares for her daughter during her treatment.

Windy_Smith-3.jpgFor the past 12 years, I have been a Nurse at UW Health's American Family Children’s Hospital. My career began in the Float Pool, then I transitioned into a Care Team Leader and eventually become a Nurse Manager of a 24-bed medical/surgical unit. I love what I do.

In July 2019, my 8-year-old daughter, Brielle “Ellie,” developed an extreme thirst which caused her to urinate excessively. She was diagnosed with Diabetes Insipidus – a rare condition that causes an imbalance of bodily fluids. Since this disorder had come on suddenly, our endocrinologist recommended an MRI, which revealed Langerhans’s Cell Histiocytosis—an uncommon cancer that causes lesions in tissue. A lesion was found on Ellie’s pituitary stalk, and we learned she would have to undergo chemotherapy and take high doses of steroids, antibiotics, antacids, stool softeners, and depression medications.

May 06

Families Seeking Mental Health Resources Need Compassion and Respect

MichaelWolf.jpgMay 6-12 is National Nurses Week, and May 7 is National Children's Mental Health Awareness Day. Michael Wolf, BSN, RN-BC, a nurse manager for Pediatric Behavioral Health at Wolfson Children’s Hospital, in Jacksonville, Fla., shares why children's mental health is important to him.

It’s distressing for any parent to have their child admitted to the hospital and to turn over control to a medical team they’ve barely met. It’s even more distressing for parents when their child is admitted to an inpatient psychiatric unit because he or she has a mental disorder and is experiencing suicidal thoughts.

My name is Michael Wolf (the kids call me Mr. Mike). I’m the nurse manager for Pediatric Behavioral Health at Wolfson Children’s Hospital in Jacksonville, Florida. We have a 14-bed inpatient psychiatric unit that provides brief acute care hospitalization and crisis stabilization services for children ages 6 to 18 years of age. We also have a partial hospitalization program/intense outpatient program serving up to 10 children, 13 to 18 years of age.

Apr 20

I'm Not "OK" -- A Mother's Testimonial

fam21.pngIf you’ve ever been in a hospital, you have heard machines chiming. The ding endlessly reoccurring until a nurse can tend to it. The NICU is no exception--if anything it’s tremendously louder with each ring. Each little life fighting so hard, and in the left-back corner is my son also fighting for his life.

It was nearly impossible to find the right words to explain what was happening. We held on to hope through the moments of frailty and uncertainty. That was our only solid ground through months of surgeries, intubations, needle sticks, lumbar punctures, and blood transfusions.

Apr 08

Helping Children with Autism Cope During a Pandemic

As we all cope with uncertainty due to the spread of COVID-19, children with autism spectrum disorder (ASD) may have an even harder time with these stressors.

Children with autism may struggle with understanding information they see and hear about COVID-19. They may also have a hard time communicating their concerns or asking questions, especially if they’re stressed or confused. Because it can be difficult for them to understand and convey their emotions, they may become easily frustrated. Additionally, as many parents of children with autism know, changes to schedule and routines often trigger anxiety and disruptive behaviors.

Apr 07

COVID-19 could kill my toddler. Stay home for him and others with underlying health conditions.

Meghan Wooldridge’s first-person essay below was originally published by PublicSource. Speak Now for Kids republished her essay with Meghan’s and PublicSource’s permission.

By necessity, I have to pay very close attention to what is going on in the world of infectious disease as the parent of a medically complex child. In the weeks leading up to COVID-19 reaching pandemic status, I began to circle the wagons, knowing that despite whatever measures were taken, we were going to have to go back into isolation. 

My 3-year-old, Timmy, was born with a congenital heart defect, and he is part of the at-risk population should he contract the virus. When the media says that this virus is deadly to those with underlying health conditions, you breathe a sigh of relief because that is not you or your children. It is my child. 

Mar 24

Meet Kelsie: Certified Child Life Specialist

Kelsie is a Certified Child Life Specialist in the radiology department at Michigan Medicine C.S. Mott Children’s Hospital. Over the past 18 months, Kelsie and her colleagues have developed a program to reduce the use of sedation for pediatric patients who require an MRI.

The creation of the MR-I Can Do It program has offered alternative, safe options for children who do not medically require sedation. Sedation is often utilized so the child can remain still for the duration of the scan. But sedation comes with inherent risks for patients. That’s why Kelsie and her team have created opportunities for education and preparation to help kids complete MRIs without sedation.

When a child is scheduled for an MRI with sedation, Kelsie and the MR-I Can Do It team review the patient’s information to see if he or she is an appropriate candidate for the program. If so, the team contacts the family to further assess if the child may be able to complete the scan without sedation. Through developmentally specific teaching and preparation—and the support of child life specialists— over 600 children at Mott have completed their scans in the last year and a half without sedation.

Mar 12

World Kidney Day - Henry

When Henry laughs it is a full-body, head-to-toe roar that can fill a room. His laughter is something that the dialysis nurses at Riley Hospital for Children have come to love. It’s a laughter that is easily brought out and one that brings smiles to everyone around him.

His sense of humor and spirit are inspiring for anyone, but they are even more impressive considering what he has been through in his short life. Born with end-stage renal disease, he’s had 35 surgeries by the time he was 3 1/2 years old. The renal disease also meant undergoing dialysis four hours a day, four days a week. More importantly, he needed a new kidney.

Mar 11

Meet Sarah: Certified Child Life Specialist

Sarah Keyes knew she wanted a career working with children in the medical setting, so when she learned about child life degrees she knew it was the perfect path for her.

“I absolutely love being able to provide care to pediatric patients and families knowing that I can make a scary or unexpected visit to the hospital a little bit better for them,” Sarah says. 

Sarah’s current role in the pediatric emergency department at UW Health’s American Family Children’s Hospital is unique among child life specialists. It’s a fast-paced environment where she sees many children during her shift and works with a diverse population of patients.

Sarah notes that only a handful of hospitals in the United States have child life specialists in their emergency departments. She helped start the 24/7 program that provides child life services overnight not only to the emergency department, but also all inpatient units and operating rooms. “Many scary events and new admissions occur overnight, and to be able to be there for our patients and families during some of the most vulnerable hours is truly amazing,” she adds.

While Sarah works with patients of all ages, her two favorite age groups are preschoolers and adolescents. She says watching preschoolers use their imagination while they engage in fantasy play and explore the world around them is beyond fascinating and fun to watch!

Mar 04

Meet Beth: Certified Senior Child Life Specialist and Lekotek Leader

His smile lights up the waiting room when he sees her. He can hold his head up just long enough from where he is sitting in his wheelchair to look at her for a few moments before the muscles in his neck get too fatigued. She matches his smile with hers, greeting him with her positive energy and gently touching his arm to cue him that the play session is about to begin.

Five-year old Robby Barkoo is a patient of Beth Ryan’s, Senior Child Life Specialist at Ann & Robert H. Lurie Children’s Hospital of Chicago and leader of the Lekotek program—a therapeutic, play-based initiative that supports the development of children with special needs.

“Beth has a special spark that can light up an entire room! As soon as you meet her, you can see how passionate she is about her job and how much she cares about the patients and families she works with. We are extremely grateful for being part of the Lekotek program and having the opportunity to work with Beth,” says Jackie Barkoo, Robby’s mother.

Mar 02

Story Time

Sharon Wurster loves reading to children at Johns Hopkins All Children’s Hospital. “I love it when I can cheer up a child and make their day better,” says Wurster, who volunteers at the hospital once a week during the school year and twice a week in the summer. She prides herself on being able to “read the room,” and with a grin, she pulls Alexander and the Terrible, Horrible, No Good, Very Bad Day from her cart.

“I have a special place in my heart for sick kids away from home,” Wuster says. “Having a bad day is the very thing I try to prevent for the children I visit.”

“When Sharon began reading, I quickly became invisible to the little boy,” says photographer Allyn DiVito. “She immediately transported Cole out of the hospital and into the story. Their eyes locked and it was magical. This photo was taken halfway through the book, but by that time, Sharon had me hooked too, and I had stay and hear the end.”

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