Okay, so the ALS clinic got back with me and put in orders with her BiPap vendor to come to the house and increase her pressure settings. They said she was on the low end of the settings and these most likely needed to be increased. Great, right? I also expressed concern that she was too weak to cough anymore and was gagging on all the "gunk" in her throat, etc. and was worried about the possibility of aspiration. They sent in an order to have a cough assist machine sent out. Great again, right? Well, the RT came yesterday to deliver and set up the cough assist but did not have orders for a suction machine. Since she cannot "spit" on her own all I am doing with the cough assist is bringing the "gunk" up into her throat/mouth and increasing the possiblity of it going back into her lungs. Now since everyone is closed, due to the holiday, I will have to wait until next Tuesday to even get the orders to have the suction machine brought back out.
Now, I am no doctor and definitely do not specialize in ALS, but don't these two machines go hand in hand with each other? We were at the clinic less than three weeks ago and they were fully aware that she was having these issues and in my opinion should have placed orders to have both of these devices sent out. It seems as though I have to make all of the recomendations to the doctor's, medical equipment vendors, insurance companies, etc. I have to ride everyone to get anything done or delivered and actually got into an argument with the BiPap vendor yesterday because he seemed "put out" because he had drive out of his way to adjust her settings since it was so close to his long holiday weekend. Very sorry to inconveince him! Does anyone else have these problems?
Frustrating, Frustrating. Frustrating!
