Keep Rockin’ Cleveland 2024 Conference - Join us June 13th-15th - Learn more and register at this link.

Blog

A CDKL5 Family’s Experience With Home Care

Bennett, who lives with CDKL5 Deficiency Disorder, was recently featured in Coastal Kids Home Care’s “We Care for Rare” campaign! We asked his mom, Kara, to share with us about home care support and what it means for their family.

Q: Tell us about what Coastal Kids Home Care is and what they provide to Bennett.

A: Coastal Kids Home Care is our local pediatric home health care agency that services medically fragile children in our area. We were referred to the agency by a hospital social worker in 2020, but didn’t utilize the service until 2022. Bennett receives 40 plus hours of nursing per week. In addition, he receives 2 hours of music therapy and 2 hours of massage per month. We also receive monthly visits from a social worker and head RN to make sure we are getting everything we need for Bennett.

Clarence, Bennett’s nurse, starts his day by finishing up Bennett’s morning feeding, then doing his morning stretches, massage, and taking care of his hygiene needs. He then will be there to support when his school OT comes to work with him. As his nurse, Clarence will do Bennett’s feedings, meds if needed, breathing treatments, suctioning, and seizure care. He also monitors Bennett’s pulse, temp, and oxygen levels every hour, keeps track of all of his medical appointments, seizures, and treatment plans, cleans out his suction and medical equipment, and will do any additional medical interventions as needed, like changing his g-tube button.

Clarence will also occasionally go on family outings with us to help care for Bennett so that we can also enjoy time with our other children. He helps me take him to his appointments and therapies, reads to him, plays with him, does his stretches and massages, gives him baths… basically anything Bennett needs!

Q: What does having home care mean for your family?

A: Before we had nursing support, I didn’t know if I could go on having a career outside the home as Bennett’s medical needs continued to increase. Bennett receiving nursing care allows me to work part time as a teacher, secure in the fact that he is well take care of.

Q: Was it challenging getting used to having home nursing support?

A: I thought it would be, but within a week or two it became pretty comfortable, and Bennett’s nurses have always been like family! Also, the benefits of having someone to help me care for him are above and beyond!

Q: What advice do you have for other families who are beginning home nursing support?

A: I have supported and encouraged other families in my area to accept and embrace it! It will change your family’s life in such a positive way. Bennett now has a best friend he is buddied up with and a nurse who is constantly watching and caring for him. We also have a group of people who are all supporting his needs- therapists, social workers, and nurses. Bennett is living a healthier and more enriching life with these services, and it frees up my time to work, run errands, exercise, and also tend to my other two boys.

Q: What’s new with Bennett? How’s life as a (soon to be) 8-year-old with CDD?

A: Bennett has been doing better than ever! He has not been hospitalized in almost a year, which is amazing!! He is having so much fun getting really good at playing with his switch toys, playing with his brothers, and going on family outings. He is receiving home hospital instruction from the school district, but his nurse actually does most of his instruction. He reads to him, does vision therapy and communication with his iPad Pro, works on fine and gross motor skills, and sometimes they just hang out and watch Disney movies.

Many thanks to Kara! Would you like to share about a part of your CDD life with us? Email Marissa (mbishop@cdkl5.com) to be featured.