Yes, but No, or Maybe

Do you ever feel like you go forward one step, or wheel length, just to go backward further? I think we all do at some point, but some days more than others. Unfortunately, that's still the case with the insurance issues.

Last week, my doctor had a conference call with another doctor and a couple nurses at my insurance company. They agreed I need to have care in order to prevent, and take care of, pressure sores and other needs. However, since I am not on the ventilator, just the diaphragm pacemaker, it doesn't need to be skilled care. However, that kind of care is considered comfort care, which isn't covered by my, or apparently any, plan.

The nursing home I'm planning to go to if nothing else works out also doesn't know if they can take me. I gave them my care needs, which I have in detail in a 30 page book, a few weeks ago. Now, they're unsure if they can take me with their other vent patients as I could be too much work for them. My caregivers laugh at that, but at least it shows they are making sure everyone gets adequate care. However, that means I may have to look at a facility much farther away from home, with just over a week to go.

At this point, all I have is that I do indeed need care, but can't find a way to get it. We are told in Matthew 6 to not worry about tomorrow, for today has enough worries of its own. That is definitely true, but increasingly difficult to remember. With trying to make sure to get ample time off my pressure sores, it's hard to get work done. When that work includes trying to stay at home, prioritizing is a real challenge.

It seems the main issue I keep running into is that the Diaphragmatic Pacemaker System (DPS) isn't understood. Yes, it allows me to be off the ventilator, but I'm still not breathing on my own. If my arm hits the wires just right, I'm not breathing unless it can be fixed or I'm put back on the vent. In the three years I've been using the DPS, that has happened several times. Therefore, I need caregivers skilled in the DPS and ventilator use. I still also need suctioned regularly, more than when I was on the vent, and continued chest treatment. No, the DPS doesn't have tubes that become disconnected, but it still has its own trouble.

By the next post, I need to have a solution, but unfortunately I won't be holding my breath. In order to do that, I would need the DPS turned off!