"Please remind me what's best for him." [ Ссылка ]

As a parent, when we are in a crisis, sometimes we lose sight of the forest through the trees. "When I see the line go flat, I know I'm going to want them to do chest compressions." The mom of two sons with mitochondrial disease talks about how her sons' palliative care team helps her remember what her goals of care are for her children. Nurse -- when you're surrounded by medical technology, it's hard to remember your love and your care and your parent role and what it was you want for your child. It's different for every family. and it changes over time. We want parents to know there's not just one way. It's putting it together for that child and that family.
(The mom of two sons with mitochondrial disease and their pediatric palliative care nurse talk about how they work together to get her sons comfortable.) If your child has mitochondrial disease or another pediatric life threatening illness, this mom and her palliative care nurse share their guidance, which may help you find your way. Visit www.courageousparentsnetwork.org to see more videos.

свернуть