One nurse said, "Can I leave now?". Another, "I have to STAND there while she takes 5 breaths? Standing??"
Victoria, the visiting tech from Community Surgical, is wonderful! She has experience with ALS patients and has been so patient and kind fitting the equipment perfectly and finding the proper settings for me. She's so refreshingly compassionate and appropriately disturbed by my situation here.
"You're making plans to go somewhere else right?"
"I'm hoping that once I'm finally approved for Medicare, better options will open up."
She acts as though she not only cares about me, but also how she is performing her job which is something I usually need to travel beyond this building to experience. She's been here for 2 demonstrations already and she will come back again on Monday to get the weekday crew.
I've slept with the NIV the last 2 nights. I have to have a nurse put the mask on at night because my arms are too weak to get around my head, but I've learned how to get it off my face and the machine turned off in the morning instead of waiting for help. It certainly helps with sleep and while it's in use my constant headache subsides. Victoria explained the headaches are from built up carbon dioxide that I'm too weak to expell. During the day, I still feel like someone is jamming an ice pick in my left ear.
The cough assist is a truly torturous, science fictiony device designed to illicit a productive cough in order to clear the excess phlegm that ALS causes in absence of the lung function which is also caused by ALS. This is not a merciful disease. The nurse's job is to firmly hold the mask covering my mouth and nose while air is forced into and out of my lungs 5 times with tornado like force. It. Sucks. I'm supposed to have this treatment 4 times a day. So far, zero times a day. Thankfully, Victoria will be back again tomorrow to express how important this is and that it's not optional. The cough assist machine needs to sit on an additional bedside table which I later found out was brought to me from another occupied bed here. My CNAs last night said, "You're the star here now. A man on this floor doesn't have a bed tray now."
"What?" I replied.
"Yes."
"No!"
"Yes", she confirmed as if I'm the problem.
My roommate was in tears last night with our CNA over the persistent lack of large sized diapers. The CNA seemed to think she, the patient, should be more understanding that this is just the way things are here. There are always many small diapers with a regular deficiency of ones that actually fit the residents. Small size is cheapest and they all are worthless dollar store quality. My HARK-ALS fundraiser supplies mine to at least alleviate that issue for me now.
The fundraiser supplies many things I need that the home will not. Thank you all so so much for your generosity this whole time. It means so much to me and my family especially as my care needs increase. Please share this link if you can
https://secure.givelively.org/donate/hark-als/help-melissa-in-her-battle-with-als?fbclid=IwZXh0bgNhZW0CMTEAAR0Eh1GWvrlmP9ccy7dsdxWHDi6sl2MCdlWjYOVkKpb-Sg23I94RlNqvfYM_aem_AdUdO-GdtWT5wXU9p4Bn4int0cvDFTFW05Cc1MxQ3qSbQCglxsXZFPffYB8TTlBXODXXOwob6O-iAmXmiyc1zZJs
