Steve's latest challenge - in addition to his End Stage Renal Disease requiring Hemodialysis - is Critical Illness Myopathy/Polyneuropathy. Briefly, this means that Steve is waiting for his muscles and nerves to "wake up" from the effects of his lengthy post-operative course, and then his cholecystitis complicated by sepsis! In more practical terms, this means that Steve cannot sit up, stand, walk, or even roll over in bed.
But, day by day, he is making progress in his core strength and range of motion. And he can feed himself, use the phone, and perform basic grooming.
Here's the big "catch:" he's running out of Medicare-covered days. In fact, he's into his sixty-day lifetime reserve!
No skilled nursing facility will take him - and I wouldn't want that anyway! We looked at a wonderful Adult Family Home, but the cost was completely out of pocket - and Steve would have to go to the kidney center for dialysis; again - transportation to and from would not be covered.
The default position - and we believe the best option - is going home with 24-hour-a-day care. And our goal is July 12!
So, here's our worklist:
- Steve must make as much physical progress as is humanly possible between now and July 12.
- Steve's new fistula must work well enough for us to use it at home for Home Dialysis - otherwise, we must continue to use his central line with its potential for infection.
- We move to a fully wheelchair accessible rental on July 9 - miracle; no ferry commute!
- I have arranged for a rolling shower chair to join the hospital bed, Hoyer Lift, and wheelchair which arrive on July 8.
- Steve and I meet with a home care agency to discuss the care needs that we will pay for out of pocket (Medicare doesn't cover this, even though they would have covered a nursing home - if one had accepted Steve!)
- I find a new gym.
- We move Steve to the Lake Forest Park rental on July 12 - to begin home care, and restart Home Hemodialysis!
So, we are in the middle of an interesting time. Clearly, it's a new chapter. We have hope. We have more time. And best of all, we are going home.
Take care. Linda Gromko, MD