>What kind of support services do you currently receive and/or did you
>receive when you were younger? Our new insurance managed care is demanding
>that Kristen's home nursing support be reduced from 7 to 3 nights/week. My
>husband and I work full time and have two other children with significant
>needs as well. Any suggestions on how to safely care for Krsiten ie be
>awake of hypoxic insult, (no pulse ox) need for nebs (can't hear her over
>sound of vent from our room), address apneas and SLEEP? HELP!!!
Joanne.....
I have thought about your message for days..but have been unable to post due
to traveling..and then recouping from my trip. I understand you are looking
for alternatives in caring for your daughter at night. Since you are also
in IL, like myself have you looked into the Department of Rehab
Services...Home Services program? The can provide money to assist in the
hiring of PCA's, if you family qualifies..(and it well should). Also you
might want to contact your local Center for Independent Living Center if one
is available in your area. Most centers provide a listing of persons will
to assist persons with disabilities with their daily care. I will be honest
in saying it is a hit and miss situation. Some PCA's are great, some not so
good.
If things get real bad in finding a solution you should contact your local
govermental official for some assistance due to the fact that you have
adopted your lovely children. It is a start...
Also maybe contact the American Lung Association, March of Dimes, etc. if
you haven't already. I'm not sure as to what or who you have contacted.
Good Luck!!!!!!!
If I can be of any assistance let me know.....
Annette Hanna
nete1(AT)midwest.net