Hello. A good friend has a 7 month old with Down's who is having problems eating. He was aspirating much of his milk and was getting repeat respiratory infections. He is now on an NG tube to eat. This family is struggling and needs help. I'm thinking of a hospice or nurse who can come to the house. Does anyone have any experience in this area? The parents are up most of the night either delivering a feeding or racing to his side when they don't think he's breathing. I think it's been weeks since they got a full nights sleep! (They also have a 4 and 2 year old.) Please give any advice you can.
Thanks to all who responded. I called St Clair County Early On program and the lady was so nice explaining the services that are offered. She gave me the phone number for the Early On in the county where my friend lives. I also found a local chapter website for down's syndrome which I passed on also. Within the last couple of days, this little boy has been doing better. Today he was having an all day test done at the hospital on his digestion and sleep. Hopefully this will also launch in to more services for the family.
Thanks again everyone!
Have her call St Clair County Mental Health, they have services that would probley be able to help them, or they will refer her to help! There's respite services that they may be eligible for. I used to be a direct care worker and I know that they will be able to help. I think the # is ###-###-#### or look it up in the phone book. L. O'Neil
Usuallt hospice is for those who are dying. But early on is a great service, or a nurse. Your friend should talk to her ped to see about options. To have a healthy, happy baby you need healthy, happy parents too. Also there are a ton of resources on the web.
Call your local Community Mental Health or state one. There are a lot of services sometimes you have to dig them up to get them. I know I have two autistic children and they provide respit care at no charge for me and they pay the persons doing it. I also have friend with a child who was in a car accident and has injuries like "Supermans". He is perolized from the neck down. They sometimes have a nurse come in to help with the feedings and other needs. Take Care I can not imagine I have a seven month old too, M. Duncan
I'm an RN and for most of my years as a nurse I've worked hospice and home health care. A person can only be admitted to hospice if two things exist; a physician must sign papers that if the child's/patients disease is to run it's natural course the person should expire in 6 months and there will be no measures to cure the patient. Hospice can provide more benefits than home care. When a patient is accepted into home care goals have to be set and met asap. The patient has to be home bound needing care that the family needs to learn to give or that by physician's order or law must be done by a licensed professional. Sometimes a physician may order kind of care that won't be covered by insurance. There is also private duty care that can sometimes be covered by insurance. A lot depends on the family's resources. Can they get help from extended family members or friends? Do they belong to a church/temple/synagogue that has members willing to step up and provide a couple of nights straight for the parents to get some sleep. I haven't worked for 1 1/2 years because I have seizures which also provent me from driving. Please give me a call @ ###-###-#### if you would like more info. Just remind me when you call what it is about. I hope this has helped.
if they aren't already, they should get involved with Early On in their county. They have been MUCH help for us in the last year.
