This week we had the privilege of interviewing Cindy, a nurse and family caregiver who has a remarkable story about caring for her daughter with Hirschsprung's Disease. During the interview, we found ourselves in awe and in tears. We are super grateful to Cindy for sharing her time and insights with us. For those who may not have understood some of the terminology, we have some definitions below.
Our quote of the week was from Pema Chödrön: "The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and mind...
This week we had the privilege of interviewing Cindy, a nurse and family caregiver who has a remarkable story about caring for her daughter with Hirschsprung's Disease. During the interview, we found ourselves in awe and in tears. We are super grateful to Cindy for sharing her time and insights with us. For those who may not have understood some of the terminology, we have some definitions below.
Our quote of the week was from Pema Chödrön: "The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and minds beyond limit."
Our news of the week was: https://www.aarp.org/caregiving/home-care/info-2024/carehaus-baltimore.html
This article talked about an intergenerational cohousing community in Baltimore for older adults. They will reside in the community with caregivers and caregivers' families. This housing setup will benefit all involved by providing an affordable space to live, work, and socialize. We could not help but think of Rachel Cohen and her inspiring interview in which she shared the value of intergenerational communities.
Definitions:
-TPN (Total parenteral nutrition): nutrition that is delivered through an IV to bypass the digestive system.
- Ileostomy: a surgical opening connecting the ileum (part of the small intestine) to the skin surface to allow for stool to pass into a collection bag.
- Hirschsprung's Disease: a birth defect where the nerve cells that affect the colon do not work. This can lead to serious issues such as infection.
- Thymoglobulin
- ED (Emergency department): AKA emergency room.
- GI (Gastrointestinal): the digestive system starting at the mouth and ending with the anus.
- Vent (Ventilator): a machine that helps someone breathe.
- IV (Intravenous): A plastic tube placed in a peripheral vein for fluids and medication.
- Central line: A line like an IV that provides access to veins near the heart.
- PICC (Peripherally inserted central catheter) line: A line like an IV that provides access to veins near the heart. It is generally inserted in the arm where it bends.
- Port (Port-a-cath): A type of central line that is surgically embedded underneath the skin and accessed with a specialized needle called a Huber needle.
- Heparin: A type of medication that is used to prevent clots in central lines. It may also be used to treat clotting issues.
- IVIG (Intravenous immunoglobulin): An antibody treatment that is used to treat autoimmune, infectious, and inflammatory conditions. It is given through an IV.
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