Meet Odinn.

When Odinn was just a few months old, his mom Kathryn began noticing differences in his development compared to her two older boys. He frequently struggled with respiratory issues and had been admitted to Lucile Packard Children’s Hospital numerous times. After several genetic tests, all his doctors could determine that something was affecting Odinn, but he did not fit easily into any diagnosis. Thus, all they could do was treat his symptoms and wait for science to catch up.

That is until last year, when doctors sent new lab genetic orders to Germany where they reran Odinn’s blood work and compared the skin sample taken from him to confirm a diagnosis. At last, his parents had an answer. Odinn was diagnosed with a rare genetic disorder called CACNA2D1 which causes developmental delays, movement difficulties, and greater vulnerability to respiratory and other infections. 

For the first four years of his life, Odinn’s family walked the difficult road of medical complexity alone. However, in 2022 after another long hospital stay, Kathryn told doctors she was ready to have help. Previously, she had turned down efforts, “I felt like I had to do it on my own. I was not ready to have someone in my house and trust them to take care of Odinn.” However, at last Kathryn and her husband could feel burnout approaching. With the encouragement of a close friend who utilizes Coastal Kids, Kathryn learned more about her options.  

This time when Odinn was released from the hospital, he went home to 8 hours of shift care with their new Coastal Kids Home Care nurses Amber and Nashia. Having trusted nurses to care for Odinn has helped tremendously by providing Kathryn and her husband a break to sleep, take care of the house, and work. According to Kathryn, “It is nice to have help at home and not feel like I have to do everything alone.” Amber and Nashia have become like family, even joining them on vacations to help provide care for Odinn. 

Soon after accessing shift care, Kathryn learned that due to Odinn’s diagnosis, he also qualified for more comprehensive palliative care services. For Odinn this means frequent visits with music therapist, Daniel Le. Hearing Daniel sing his favorite songs from Sesame Street or Disney always brings a smile to his face. He also delights in watching his big brothers play video games. Despite being nonverbal, Odinn’s laughter resonates throughout the entire house. Although their journey of medical complexity is not over, Coastal Kids' shift nursing and palliative care services have helped to pave an easier path for the Eastes family.  

“It is nice to have help at home and not feel like I have to do everything alone.” - Odinn’ Mom