Hi,all.
Haven't posted in a while, been a very busy month, (but when isn't it, as you all know).
We ended up being denied any home health care, nursing or otherwise, they said it wasn't 'medically necessary'. What a joke. I am pursuing some part time help out of pocket, I need to stay strong for him. Went to the clinic at the end of last month. It may be our last visit. We were there most of the day and my husband was so exhausted, he cut it short himself without seeing the final appointment and I brought him home. Getting tired always makes him progress and he doesn't recover to what he was before we went. I know this disease doesn't have a linear progression and he is declining again. He doesn't want to go back to the clinic. He says he feels so much better not thinking he has to go back there. He is using the trilogy intermittently during the day now plus cough assist, suctioning, nebulizer...etc. He is still eating by mouth fine. He asked to bring hospice in. I don't know where this will take us, but since they have started my husband is so relieved and his blood pressure is within normal range again, which it hasn't been since he was diagnosed.
Thanks for listening.
Annie