u/derangedmacaque

So I got misdiagnosed with my ALS for two years and now they also missed advanced bladder cancer. This is the premier teaching hospital in my state of Colorado. They found blood clots in my lungs, so I’m on a blood thinner. The clots are probably from the cancer, they said The pulmonologist also ordered a cough assist but I might not get it before I leave the hospital.
It’s really good that I got my feeding tube last week because I came home and I actually started not being able to swallow pills and food so we’re using it for my nutrition and medication. I’m glad I did it.

So far I have gotten on top of having a hospital bed, a custom wheelchair, a shower buddy chair to get me into the shower because I have a shower tub, I got a Hoyer lift, I bought a pure wick and I’m waiting for a second in pure through my insurance whenever the fuck they get that done , and now I have to get the cough assist.

What else is there and then I might need you guys?
ALS United is giving me a communicator iPad this week because I’m already losing my speech.

I am hiring a second caregiver before I get out of the hospital because I need 24 hour coverage or you know like close to 20 hours coverage or something like that because I am pooping at night in my diaper when I have no help and is causing horrendous UTIs

Has anybody dealt with this pooping situation at night and how did you deal with that? I am trying to think of creative solutions to this because of my lymphedema and ALS t and losing the ability to control my pooping, and I’m already in diapers all the time