OMG - What should we think about this? This is our Medicare dollar at work!
Well, I'm delighted that Steve is working on his "Bed Skills!" He's making progress!
Here's the story: when Steve came home from the hospital in 7/2010, he had to be moved from bed to wheelchair via Hoyer lift. He couldn't transfer himself in any way. He really couldn't sit up by himself. He couldn't turn over, or scoot up in bed. He was fully disabled with "Critical Illness Myopathy," - a little known and less understood phenomenon which impacts people after severe illnesses. It hits people who've been on a ventilator for a while, those who've had a major surgery, those with sepsis, those with serious cardiac or renal disease. Check all of the above.
Steve wasn't paralyzed; just exceedingly week. And it wasn't a matter of volition; his body just couldn't do the things he asked.
Steve was further impacted by a fistula surgery which compromised the blood flow to his hand and resulted in a median nerve injury. His left hand became practically useless.
Our bedroom is functional - but it is really more like a dorm room. Steve's in a hospital bed, and I'm in a daybed. This is very useful for the nursing tasks we must perform many times a day.
While I know this sounds like an utter luxury given the overall scope of troubles in the world, I'd really like to sleep with my husband. And two big people in a single hospital bed isn't very comfortable.
When Steve acquires "bed skills," i.e. scooting, rolling over (like a four-month-old does), we can bring in the big bed from the garage and sleep like a couple.
We haven't done this since Steve went into the hospital on March 2 - just about a year ago. A year ago, when all of our lives sommersaulted into such chaos and uncertainty. When Steve's dying would have been the assumed and logical outcome of his continuing series of nightmares.
But Steve didn't die. He's coming along, little by little. And while I've been told that "you get what you're going to get back after a year of Critical Illness Myopathy," I've got my money on him yet.
In spite of everything, Steve's mind is still exceptionally sharp - probably a mixed blessing. My son Tim - who serves as one of Steve's caregivers - bought a new Trivial Pursuit game. And Steve can beat us all!
But then, Steve could have lost a few hundred thousand neurons in all his events and still have plenty to spare! Amazing.
Take care,
Linda Gromko, MD
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