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This isn't quite a prayer request and it's not a Bible Discussion, Family problem, or News worth, but I have a little time now to let people know how it's going now that John's home, so figured this is a Misc. as it gets.
Have you ever wondered why there are no verified miracles today? It's not because there are no miracles. It's because how doctors react to them when they happen. Here are some of the reactions from doctors, nurses and therapists who read John's 2000-page case (And it is one of the longest cases most doctors have ever read, so it's not that much of an exaggeration) before they meet him:
-- "When you get home, buy a lottery ticket, because you are the luckiest man I've ever met."
-- "Do you have any idea how lucky you are? I can't believe you're alive."
-- "We're going to take you off the foley, but I suspect you'll need catheters for the rest of your life. No one ever gets back bladder function after 6 months of not using it." And when he could go to the bathroom 6 hours after being take off, "We're going to have to ultrasound you so you know when you have to go." And three days later after e kept complaining it's hard to get an ultrasound when the bladder is already full, they realized he had full function.
-- "I was expecting you just to stand up, not walk the length of the parallel bars today."
-- "We'll take this slowly, but don't expect to make it up all four steps today." (He did it twice. He did it one foot at a time the next time.)
-- At the second to last day of PT at the nursing home, e smiled and said, "Watch this." Then he walked from his walker over to his wheelchair without anything but slow-and-steady. They had to test this new found ability so he walked slowly down the hall (wheelchair behind him) to the levators -- roughly 70-100 feet. I'd tell you what they said, but they were too astonished to say anything.
Everyone kept telling him how lucky and amazing he was. He kept telling them, "Not me. God!"
The reality of home
We still break out into our happy dance at any given moment. (I had to do a small version of it in the healthcare aisle at the store today, so no one thought I was a dangerous nut, but had to do it then anyway. lol)
But, no one told us it would be this hard either. One of his big goals to get home was to be able to go upstairs to go to the bathroom or bed. So one of the first things he did was go upstairs. If I didn't give him a small push brom the back, he couldn't make the last two steps. And once there, he had to lie down to rest up to come back down. He can do 13 steps, but not quickly enough if he needs the bathroom. So upstairs won't happen for him for a few weeks. The sofa is infinitely more comfortable than his hospital bed, but mostly because, unlike the hospital beds, it was made for someone up 6'1" so he's not squished. In my mind, I can't imagine a sofa is comfortable for more than one night. And to add to the problem, his trick-ribs separated again. (Accident at work 40 years ago, so they pop out of place any given time, but it's as painful as the first time.) He has to sleep on his left side, which is the wrong side to sleep on for his bed wound.
I asked four times in the last four days for someone to teach me how to dress that wound. I was promised four times that someone would, but no one did. A wound care nurse came to the house on Friday and taught e how. Little problems. I don't have any medical background and she passed me what was needed next, so I didn't see what pack they came out of. (And didn't know I needed to.) Oh, and lots of supplies, but nothing to pack the wound. The bandage fell off, so I had to pack it. 3 PM on Saturday I'm doing the best I can but I can't find the oakum and don't know what the package looks like. All I know is it looks like corduroy and I'm supposed to cut it around the edge like An L. Well. The only piece I could find was the last piece, so if I use that again it's smaller. Must be some reason why it had to be that length. (I found out it's because that's how much fits in today, but I didn't know to ask that on Friday.) l I needed to know is what the corduroy was called so I could find the pack. Apparently, "corduroy" isn't understood by nurses because that's not its real name. I spent one hour to make a call -- first to John's old nurse's station at the nursing home, but they said no one knows how to pack a wound on weekends and he's not their patient anymore, so she connected me to the hospital ER, who obviously had no time nor desire to talk to a civilian about this stuff, so he connected me to someone else, who also had no idea what I'm asking, so I got connected to someone in the Bronx, who was determined to send me back to the CLC, because they have to have a nurse that can dress wounds on the weekend. (I told her of course they do, but they don't have to deal with me, so don't.) I hung up on her because she was going to send me back. She called back, and her next brilliant idea was for me to "get help" to get John out of the house to take him to the ER to have someone teach me. It was 4 PM by then. ER. That means we'd be home by midnight! Only way to get er off her "I'll help you to do something you can't do" kick was to agree that's what I'd do, knowing I was lying. And after that useless phone call I called the home-help number to talk to the message machine.
8 PM finally got a call back. We had destroyed that piece of corduroy already, because John wasn't getting what I meant by L-shaped so he cuts it to make an L of a different size. And lo and behold that was the only piece of corduroy. So, although it wasn't made for this purpose, I had to use gauze to fill the wound, which is dangerous because there is no skin in there, therefore can get infected easily. I did. It's supposed to last 24 hours. It fell apart the next morning. My next try lasted until midnight. (Already took my sleeping pill too.) That one fell out sometime during the night, but John didn't tell me until I was on my way out for the blood test, plus grocery shopping. But the second I got the groceries away, the nurse came back and put the wound vac on. At least now I know how I probably don't know how to fix it this time. (I was sure I could dress it last time, so know I'll goof it up is a relief, compared to simply being deluded. lol)
After they left, I realized I was living on a scarfed down Tastykake pie all morning, so I said I was hungry.
The last day at PT, John was shown how to make a grilled cheese sandwich. (He knows how. He wa taught how with limited mobility. lol) And on Saturday, before the dressing fell off, he made tomato soup. Soooo, John made lunch!
At 1:15 the PT came. (I thought we were supposed to have time to breathe occasionally.) As I was writing this some equipment was delivered.
Our downstairs is 16' wide (counting the stairs) by 35' long. Once furniture is included we have roughly a 20 foot long space to go from front to back with three spots in between that are already cramped, but could barely fit in a walker too. Now we have two walkers, a commode, and up bot the ya- and the -zoo in medical supplies. And now he's tethered by a wound vac again, so a cord follows him around. In the space of four days, he has one bruise and I have two bruises from hitting or tripping on something trying to get around.
This is harder than I thought, but I'm still so very glad he's home. And, he's either the luckiest man alive or God did his thing. We don't believe in luck. We're very glad God is on our side.
(And can't proof because more stuff to do.)
Have you ever wondered why there are no verified miracles today? It's not because there are no miracles. It's because how doctors react to them when they happen. Here are some of the reactions from doctors, nurses and therapists who read John's 2000-page case (And it is one of the longest cases most doctors have ever read, so it's not that much of an exaggeration) before they meet him:
-- "When you get home, buy a lottery ticket, because you are the luckiest man I've ever met."
-- "Do you have any idea how lucky you are? I can't believe you're alive."
-- "We're going to take you off the foley, but I suspect you'll need catheters for the rest of your life. No one ever gets back bladder function after 6 months of not using it." And when he could go to the bathroom 6 hours after being take off, "We're going to have to ultrasound you so you know when you have to go." And three days later after e kept complaining it's hard to get an ultrasound when the bladder is already full, they realized he had full function.
-- "I was expecting you just to stand up, not walk the length of the parallel bars today."
-- "We'll take this slowly, but don't expect to make it up all four steps today." (He did it twice. He did it one foot at a time the next time.)
-- At the second to last day of PT at the nursing home, e smiled and said, "Watch this." Then he walked from his walker over to his wheelchair without anything but slow-and-steady. They had to test this new found ability so he walked slowly down the hall (wheelchair behind him) to the levators -- roughly 70-100 feet. I'd tell you what they said, but they were too astonished to say anything.
Everyone kept telling him how lucky and amazing he was. He kept telling them, "Not me. God!"
The reality of home
We still break out into our happy dance at any given moment. (I had to do a small version of it in the healthcare aisle at the store today, so no one thought I was a dangerous nut, but had to do it then anyway. lol)
But, no one told us it would be this hard either. One of his big goals to get home was to be able to go upstairs to go to the bathroom or bed. So one of the first things he did was go upstairs. If I didn't give him a small push brom the back, he couldn't make the last two steps. And once there, he had to lie down to rest up to come back down. He can do 13 steps, but not quickly enough if he needs the bathroom. So upstairs won't happen for him for a few weeks. The sofa is infinitely more comfortable than his hospital bed, but mostly because, unlike the hospital beds, it was made for someone up 6'1" so he's not squished. In my mind, I can't imagine a sofa is comfortable for more than one night. And to add to the problem, his trick-ribs separated again. (Accident at work 40 years ago, so they pop out of place any given time, but it's as painful as the first time.) He has to sleep on his left side, which is the wrong side to sleep on for his bed wound.
I asked four times in the last four days for someone to teach me how to dress that wound. I was promised four times that someone would, but no one did. A wound care nurse came to the house on Friday and taught e how. Little problems. I don't have any medical background and she passed me what was needed next, so I didn't see what pack they came out of. (And didn't know I needed to.) Oh, and lots of supplies, but nothing to pack the wound. The bandage fell off, so I had to pack it. 3 PM on Saturday I'm doing the best I can but I can't find the oakum and don't know what the package looks like. All I know is it looks like corduroy and I'm supposed to cut it around the edge like An L. Well. The only piece I could find was the last piece, so if I use that again it's smaller. Must be some reason why it had to be that length. (I found out it's because that's how much fits in today, but I didn't know to ask that on Friday.) l I needed to know is what the corduroy was called so I could find the pack. Apparently, "corduroy" isn't understood by nurses because that's not its real name. I spent one hour to make a call -- first to John's old nurse's station at the nursing home, but they said no one knows how to pack a wound on weekends and he's not their patient anymore, so she connected me to the hospital ER, who obviously had no time nor desire to talk to a civilian about this stuff, so he connected me to someone else, who also had no idea what I'm asking, so I got connected to someone in the Bronx, who was determined to send me back to the CLC, because they have to have a nurse that can dress wounds on the weekend. (I told her of course they do, but they don't have to deal with me, so don't.) I hung up on her because she was going to send me back. She called back, and her next brilliant idea was for me to "get help" to get John out of the house to take him to the ER to have someone teach me. It was 4 PM by then. ER. That means we'd be home by midnight! Only way to get er off her "I'll help you to do something you can't do" kick was to agree that's what I'd do, knowing I was lying. And after that useless phone call I called the home-help number to talk to the message machine.
8 PM finally got a call back. We had destroyed that piece of corduroy already, because John wasn't getting what I meant by L-shaped so he cuts it to make an L of a different size. And lo and behold that was the only piece of corduroy. So, although it wasn't made for this purpose, I had to use gauze to fill the wound, which is dangerous because there is no skin in there, therefore can get infected easily. I did. It's supposed to last 24 hours. It fell apart the next morning. My next try lasted until midnight. (Already took my sleeping pill too.) That one fell out sometime during the night, but John didn't tell me until I was on my way out for the blood test, plus grocery shopping. But the second I got the groceries away, the nurse came back and put the wound vac on. At least now I know how I probably don't know how to fix it this time. (I was sure I could dress it last time, so know I'll goof it up is a relief, compared to simply being deluded. lol)
After they left, I realized I was living on a scarfed down Tastykake pie all morning, so I said I was hungry.
The last day at PT, John was shown how to make a grilled cheese sandwich. (He knows how. He wa taught how with limited mobility. lol) And on Saturday, before the dressing fell off, he made tomato soup. Soooo, John made lunch!
At 1:15 the PT came. (I thought we were supposed to have time to breathe occasionally.) As I was writing this some equipment was delivered.
Our downstairs is 16' wide (counting the stairs) by 35' long. Once furniture is included we have roughly a 20 foot long space to go from front to back with three spots in between that are already cramped, but could barely fit in a walker too. Now we have two walkers, a commode, and up bot the ya- and the -zoo in medical supplies. And now he's tethered by a wound vac again, so a cord follows him around. In the space of four days, he has one bruise and I have two bruises from hitting or tripping on something trying to get around.
This is harder than I thought, but I'm still so very glad he's home. And, he's either the luckiest man alive or God did his thing. We don't believe in luck. We're very glad God is on our side.
(And can't proof because more stuff to do.)
