Jun 15

Celebrating Gerard’s Life

GerardSeniorPic.jpgOur community of child health advocates celebrates the life of Gerard, an ambassador who participated at 2016 Speak Now for Kids Family Advocacy Day. Gerard joined three other teenage patients representing Levine Children’s Hospital to work the halls of Capitol Hill in Washington, D.C. 

It is with a heavy heart we share the news of Gerard’s passing after a lengthy illness. Below is a tribute to Gerard’s life and his incredible impact on others.

Gerard, an advocate for those like him with sickle cell disease (SCD), was dedicated toward increasing awareness about SCD and ensuring children’s hospitals considered the needs of teens. He received excellent care at Levine Children’s Hospital.

Jun 07

Update on Natalia

NataliaUpdate.jpgWhen she was eight years old, Natalia was diagnosed with Ewing’s sarcoma—a rare form of bone cancer. At 2017 Speak Now for Kids Family Advocacy Day, Natalia advocated on behalf of kids like her and the care she receives from St. Joseph's Children's Hospital of Tampa.

Below is an update from her mom in honor of National Cancer Survivors Day, June 7.

Natalia had another surgery last year to correct a leg discrepancy that resulted from chemotherapy and radiation treatment. Thankfully, Medicaid covers 100% of her careincluding all medications!

Jun 04

Raising My “Little Girl”

Blittle_-_Copy.jpgMy “little girl” is nearly 20 years old now.

If you know anything about me, then you know about my little girl, Breanna. You would know that she is the one that made me a mommy. When all the world was prepping for Y2K and the end of days leading up to the year 2000, I was debating what to call the child that grew in my womb.

Breanna introduced me to the world of disabilities because I previously only knew by privilege. She set my soul on the path to becoming a better mom and ultimately a better person. You know, it isn’t until we determine as people to look outside of ourselves and into the eyes of others that we can actually learn the world is much bigger than the box we grew up in.

May 26

Update on Elyse

Shortly after birth, Elyse was diagnosed with chronic intestinal pseudo-obstruction. At 2019 Speak Now for Kids Family Advocacy Day, Elyse advocated on behalf of kids like her and the care she receives from UCLA Mattel Children's HospitalBelow is an update from her mom.

elyse_hospital.jpgLast August during the first week of the 2019-2020 school year, Elyse was admitted to the hospital for about a week due to complications with her central line. Elyse takes her academics very seriously, and she absolutely hates to miss a day of school.

She also missed another week of school in January 2020 due to a line infection. Elyse recently had major abdominal surgery to relocate an ostomy that was not functioning ideally and to resection some of her bowel.

The surgery was successful, and Elyse is on the road to recovery. She wasn't nervous about the surgery. Instead, Elyse was more concerned with falling behind with her online schoolwork!

May 21

Addressing the Pediatric Mental Health Crisis

Experts are unsure why pediatric mental health conditions are spiking, but increased awareness and treatment options are bringing new hope to patients and their families.

From the outside, everything in Julia Paxton’s world looked perfect. She had warm, loving parents, plenty of friends, was active in student government at her Mount Vernon high school and was a trusted local babysitter.

Nationwide-2.PNG“But on the inside, I was dying,” she says now. Hiding in her room at home in Howard, Ohio, northeast of Columbus, she would cut herself to relieve her anxiety. She imagined what it would be like to kill herself to halt the constant drumbeat of anguish that had become her life.

May 19

Update on Donovan

Donovan_photo2.pngAt 2018 Speak Now for Kids Family Advocacy Day, Donovan advocated on behalf of kids like him and the care he receives from Akron Children's Hospital. Below is an update from his parents, Kevin and Lisa.

Donovan is in good health and continuing to thrive. Since participating at Family Advocacy Day, he returned to the soccer field for two successful seasons. Donovan completed the 4th grade with straight A's, and he switched to a new school for 5th grade where he continues to make mostly A's. 

May 15

Grateful for Our Nurses

CHOC_Patterson-Melanie.jpgTo honor nurses who are on the front lines of providing care during the COVID-19 pandemic, National Nurses Week (May 6-12) was extended to recognize National Nurses Month for May 2020.

Below is a testimonial from Melanie Patterson, DNP, MHA, RN, vice president of patient care services and chief nursing officer at CHOC Children's.   

I am honored to lead a team of nurses who demonstrate—every day—an extraordinary commitment to the highest standards of care. That dedication hasn’t wavered in the slightest during the pandemic. 

From supporting our command center operations to staffing a 24/7 COVID-19 helpline for our community, our nurses have enthusiastically accepted new roles and responsibilities to ensure we continue to advance the health and well-being of the children who depend on us. 

May 11

Recognizing Children's Hospital Nurses - Marianne's Story

Editor's Note: For National Nurses Week (May 6-12), we recognize the incredible dedication of nurses across the country--especially those providing care to our most vulnerable in children's hospitals. Below is an update from Marianne Hatfield, Vice President of Yale New Haven Children's Hospital & Yale New Haven Hospital Women's Services.

YNNH-COVID.PNGAs COVID-19 has not affected the pediatric population in the same way as it has affected the adult population, our pediatric services have seen a steep decline in in-person clinic and emergency department visits. We have had the same ban on elective procedures as our adult counterparts leading to a significantly decreased census in our inpatient and pediatric ICU units--with the exception of our neonatal intensive care units which have maintained their normal volume of patients.

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.

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