Steve came home on Monday, July 12!
Now, a lot is very different: we are now in a new rental home - a wheelchair accessible home just north of Seattle in Lake Forest Park. Steve requires round-the-clock care, most of which is provided by me. He also has caregivers whom we hire. We do Home Dialysis four days/week; I'd like to go for five days - but it's better than the three times/week treatments at the kidney center. Besides, Steve just isn't that "portable."
Because of his long hospitalization and the condition "Critical Illness Myopathy/Polyneuropathy," Steve has limited muscle movement. He cannot turn over in bed. He cannot stand or walk. He cannot get to a sitting possition unaided. He can feed himself, and - thank God - he can operate the TV remote!
How long will it take for the condition to lift? How much funtion will he get back? There are no answers here.
But, there's no doubt about it: he is improving. And the improvement seems faster at home!
We are just grateful he is alive; he came perilously close to dying on too many occasions on this four-month hospital stint. But we experienced medical excellence on the parts of many physicians. Most notably, heart surgeon Joseph Teply, MD, and electrical engineer-turned-anesthesiologist Brad Tupper, MD. Unbelievable tenacity from those two shepherded Steve through two surgeries that teetered way too close to the edge for my comfort level. Steve had many complications, including acute cholecystitis (infected gall bladder), sepsis, and then "Critical Illness Myopathy/Polyneuropathy."
Now we are left with our old "friendly" dragons: diabetes and End Stage Renal Failure. Would we have ever anticipated that dialysis would become "ho-hum?"
The transition to the Lake Forest Park home was made through the grace of an army of "elves:" those who helped with the move and garage sale at the Bainbridge home, those who designed and updated the Lake Forest Park home, and the many friends who came, called, and generally supported Steve's transition.
We owe a special debt to:
- Jane McClure (co-author with me of "Arrangng Your Life When Dialysis Comes Home: The Underwear Factor") who designed the space from already workable to extraordinary
- Suzi Spinner who helped with all aspects of the project
- Carole Williams who helped with everything
- George Mead, who helped with designer installations and provided wonderful workmen to help
- Bob Ness, Lucia and Pete Handel, Debbie and Lenny Mickelson, Pete and Deanna Howell, Tim Franklin, and Brita Williams who worked on the garage sale extravaganza.
- And others, whose contributions I have undoubtedly omitted - my sincere apologies.
So we're back on land, I guess. And happy to be here. For me, no more ferry commute; for Brita, a more poignant transition to a new school. But, she's been a trooper about it. We are all doing "what has to be done." And we'll make it work.
Take care. Linda Gromko, MD