My neighbor's son is 7 years old and dying of adrenoleukodystropy. He is now nonambulatory, blind, hearing questionable, cannot talk, having severe muscle spasms - currently treated with Valium prn. He has a neurologist at Los Angeles Children's Hospital but because of HMO things are slow. The big issue right now is swallowing and nutritional and fluid intake. I have spoken to the family and to the nurse at the doctor's office about this. Family is not ready for Hospice. They want to insert a G-tube for nutrition but are running into delays with getting this scheduled. The child has pulled out NG tubes in the past and the family does not want to put him through that again. I currently am an RN working with ADULTS in home care. Last pediatric patient I had was in nursing school
. Does anyone have any information in terms of care that I can pass along to the family?
Jul 14, '02
As difficult as it may be to let go and let God......that would be my advice to this family, or any family in their situation. They need counseling to help them cope with their son's illness, and his pending death. They could also benefit from a support group in the town they live in. I'm sure there must be one near them...perhaps Hospice or American Red Cross would know of one to recommend to them. Research their son's illness on the web, and see what insights those websites may offer you to share with the family. Letting their son die with dignity and being held by them so he feels the warm love from his parents arms is most important to him right now. Ask the child what he wants....many children of seven years of age are living with terminal illnesses every day, and you'd be surprised at how they view dying at their tender ages. God prepares them for their going home to be with Him. They just know....:kiss
Last edit by live4today on Jul 14, '02