Friday, September 18, 2009
Totally Fed Up
Brayden's nursing hours have been decreased again despite my appeal to keep his hours at what his pediatrician has ordered 56 hours per week. I don't know where these people get their information on how to determine hours of care needed for children but they are totally wrong! How can they determine that he doesn't need nursing care when they have never seen him or evaluated him. They are stating that since his condition is stable they can decrease his nursing care hours. Anyone who has spent 30 minutes with Brayden knows he needs nursing care because caring for him is mentally and physically exhausting not to mention his rigorous care schedule. Brayden has to be monitored 24 hrs a day, how do they expect the parent to be alert 24 hrs a day to properly care for their disabled child? I have no family here to help out with Brayden and my husband has to work because I cannot. So all of Brayden's care is left up to me. He even has to be monitored at night because of his sleep apnea and he likes pulling his oxygen off. There is no one else who can provide the care he needs due to his g-tube feedings and oxygen use so he can't go to a daycare or babysitter. So thankful I don't have to work because I have no idea how he would be cared for with only 24 hrs of nursing care allowed per week. I guess that I had better get use to not sleeping. Praying that I can remain alert enough to properly care for him. Our health care of people with disabilities in this country is a joke. Ha!Ha!