NEED PRAYER NOW
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D
And two baby step backwards.
As you know, every time John takes two steps forward, there seems to be one step back. This time, the back step isn't as bad as before, but it's two of them, so I'm asking for more prayers.
1. "Hemoglobin count." That's the name of that thingy they kept counting with John when they gave him blood tests. And that's the number that tells them when he needs more blood. According to the first hospital he stayed in, (HUP), he was fine until he went under 700, which he did often, so not so "fine."
According to the second hospital, (VA), they didn't worry about it until it got close to 700. Not "at," but "close," and he kept getting close, so he'd keep getting more blood.
According to where he is now, (CLC -- the nursing home/short-term rehab for vets through the VA hospital), they get worried when it goes below 800.
Three weeks ago, he spent time back in the VA because he needed two pints of blood, because it rushed down to 590-something. BUT they supposedly/finally (depending if you're an optimist or pessimist), took him off Warfarin, because that blood thinner was the cause for him losing blood, so that should do the trick. His blood count was 860 when he returned to the CLC. And then he has had three blood test since, which, since he didn't go back to the hospital right afterward we've been pretty happy thinking that's over.
Hold the brakes! It's not over. He's not losing blood as quickly as he was, but he is going down ever so slowly. 824, 796, 760-something. Next Tuesday, when they give him his next blood test, IF he goes down any lower, he goes back to get a transfusion that day. (Not to stay in the hospital, just to spend several hours in the short-procedure unit to get another pint.) Since it's not rising, we don't think it's merely an "if."
Here's the kicker. I asked his doctor, (who is both female and probably postmenopausal like me, which apparently makes a difference in blood count numbers), "What is the average blood count for people like us?"
Answer: "1200, but for men it should be between 900-1200."
I did NOT flip out. I did not say what I'm thinking, because I didn't want to upset John, or, knowing me when I get very emotional, start crying, which really upsets John, so here's what I'm thinking that I did not say, "So? You're telling me that here is this man trying to heal from a massive heart attack, two heart surgeries, two huge infections that almost killed him, kidneys shutting down on him, and a freaking bedsore big enough to use as a mug holder for your morning coffee that he is supposed to be getting better on two-thirds of a tank of blood, simply because that's what the numbers say on how much he can survive on? HOW IS THAT LOGICAL?"
(Still a baby step, not a huge leap back because he's apparently dripping blood, not drizzling blood now.)
2. Because that just wasn't enough to grasp in one fell swoop, and because the doctor managed to forget to mention the problem with his blood count until after we settled this one, he is also going to get weaned off his foley. (Something like a catheter, but fulltime.) He's needed it for a long time, but it also works in such a way that his bladder never needs to hold the urine until he goes to the bathroom. Since his bladder hasn't had to do its job in months it doesn't work. (We know his because this has happened before and months ago.) So, he's going to have to get the foley removed and get a catheter put in every six hours to release the pee, and exercise the bladder again. In most cases, after 2-3 days a patient can just go to the bathroom as needed, but the doctor is sure John isn't that patient. We're just hoping his bladder figures out what to do, but it's not likely.
I'd be asking for prayers for the unlikely right now, EXCEPT, this is supposed to happen on Monday, blood test is Tuesday, transfusion is either Tuesday or Wednesday which IS that three day event for when that foley is supposed to be gone.
I'm not sure if you get this, but he's going to hurt from a full bladder after six hours, and, yes, I know nurses are supposed to get to it after six hours, but NO! Not usually. They can't even coordinate repacking his bedsore with physical therapy and that's just two things happening on the same day. They forget to feed him sometimes. He's wearing diaper still, because pushing the nurses button doesn't really mean they're rushing to his room to see what's happening, but have you ever been able to hold in a "bathroom" visit for an hour? Maybe you can, but he's weaker, so he can't. AND, the last time he went in for two pints of blood, it only took two hours to give him those pints, but it took another EIGHT hours to put him in a room that night. (Only time we watched Jeopardy together in the last five months, and only because I got tired of waiting for them to tell me what room he was going to, so went to visit him IN the ER. lol)
So, the idea of him going through that process with his bladder at the same time he's going through hell because gurneys are too thin and barely padded leaving his bedsore even sorer just isn't cutting it for me. (He'd do it, but simply because he's tired of fighting anything under the assumption, "They're going to do whatever they want to do anyway, so?")
I get these are just minor steps back, but most his major steps back he slept through. This kind of stuff is very tough on him, and I'm still working on keeping hope alive for him.
So prayers for these two new things. I've put in a call to his doctor about removing the foley. It has to happen soon, but two extra obstacles at the same time is just too much.
As you know, every time John takes two steps forward, there seems to be one step back. This time, the back step isn't as bad as before, but it's two of them, so I'm asking for more prayers.
1. "Hemoglobin count." That's the name of that thingy they kept counting with John when they gave him blood tests. And that's the number that tells them when he needs more blood. According to the first hospital he stayed in, (HUP), he was fine until he went under 700, which he did often, so not so "fine."
According to the second hospital, (VA), they didn't worry about it until it got close to 700. Not "at," but "close," and he kept getting close, so he'd keep getting more blood.
According to where he is now, (CLC -- the nursing home/short-term rehab for vets through the VA hospital), they get worried when it goes below 800.
Three weeks ago, he spent time back in the VA because he needed two pints of blood, because it rushed down to 590-something. BUT they supposedly/finally (depending if you're an optimist or pessimist), took him off Warfarin, because that blood thinner was the cause for him losing blood, so that should do the trick. His blood count was 860 when he returned to the CLC. And then he has had three blood test since, which, since he didn't go back to the hospital right afterward we've been pretty happy thinking that's over.
Hold the brakes! It's not over. He's not losing blood as quickly as he was, but he is going down ever so slowly. 824, 796, 760-something. Next Tuesday, when they give him his next blood test, IF he goes down any lower, he goes back to get a transfusion that day. (Not to stay in the hospital, just to spend several hours in the short-procedure unit to get another pint.) Since it's not rising, we don't think it's merely an "if."
Here's the kicker. I asked his doctor, (who is both female and probably postmenopausal like me, which apparently makes a difference in blood count numbers), "What is the average blood count for people like us?"
Answer: "1200, but for men it should be between 900-1200."
I did NOT flip out. I did not say what I'm thinking, because I didn't want to upset John, or, knowing me when I get very emotional, start crying, which really upsets John, so here's what I'm thinking that I did not say, "So? You're telling me that here is this man trying to heal from a massive heart attack, two heart surgeries, two huge infections that almost killed him, kidneys shutting down on him, and a freaking bedsore big enough to use as a mug holder for your morning coffee that he is supposed to be getting better on two-thirds of a tank of blood, simply because that's what the numbers say on how much he can survive on? HOW IS THAT LOGICAL?"
(Still a baby step, not a huge leap back because he's apparently dripping blood, not drizzling blood now.)
2. Because that just wasn't enough to grasp in one fell swoop, and because the doctor managed to forget to mention the problem with his blood count until after we settled this one, he is also going to get weaned off his foley. (Something like a catheter, but fulltime.) He's needed it for a long time, but it also works in such a way that his bladder never needs to hold the urine until he goes to the bathroom. Since his bladder hasn't had to do its job in months it doesn't work. (We know his because this has happened before and months ago.) So, he's going to have to get the foley removed and get a catheter put in every six hours to release the pee, and exercise the bladder again. In most cases, after 2-3 days a patient can just go to the bathroom as needed, but the doctor is sure John isn't that patient. We're just hoping his bladder figures out what to do, but it's not likely.
I'd be asking for prayers for the unlikely right now, EXCEPT, this is supposed to happen on Monday, blood test is Tuesday, transfusion is either Tuesday or Wednesday which IS that three day event for when that foley is supposed to be gone.
I'm not sure if you get this, but he's going to hurt from a full bladder after six hours, and, yes, I know nurses are supposed to get to it after six hours, but NO! Not usually. They can't even coordinate repacking his bedsore with physical therapy and that's just two things happening on the same day. They forget to feed him sometimes. He's wearing diaper still, because pushing the nurses button doesn't really mean they're rushing to his room to see what's happening, but have you ever been able to hold in a "bathroom" visit for an hour? Maybe you can, but he's weaker, so he can't. AND, the last time he went in for two pints of blood, it only took two hours to give him those pints, but it took another EIGHT hours to put him in a room that night. (Only time we watched Jeopardy together in the last five months, and only because I got tired of waiting for them to tell me what room he was going to, so went to visit him IN the ER. lol)
So, the idea of him going through that process with his bladder at the same time he's going through hell because gurneys are too thin and barely padded leaving his bedsore even sorer just isn't cutting it for me. (He'd do it, but simply because he's tired of fighting anything under the assumption, "They're going to do whatever they want to do anyway, so?")
I get these are just minor steps back, but most his major steps back he slept through. This kind of stuff is very tough on him, and I'm still working on keeping hope alive for him.
So prayers for these two new things. I've put in a call to his doctor about removing the foley. It has to happen soon, but two extra obstacles at the same time is just too much.
D
Actually, I talked doctor out of removing foley until after the fill-up, which is a relief to John.
Although she kind of told me it's unlikely John will ever pee on his own. (And sorry for saying pee, if that offends anyone, but I can't figure out why that's worse than urinate.) My only comfort is her long winded speech about why John can't swallow because she read the report from early in February. He CAN swallow now. The only reason he doesn't eat is because he can't sit on the too-hard chair for long enough for the swallow test. So, simply because she thinks it, doesn't always make it related to John now.
But finding where he's bleeding? They simply gave up on that.
Although she kind of told me it's unlikely John will ever pee on his own. (And sorry for saying pee, if that offends anyone, but I can't figure out why that's worse than urinate.) My only comfort is her long winded speech about why John can't swallow because she read the report from early in February. He CAN swallow now. The only reason he doesn't eat is because he can't sit on the too-hard chair for long enough for the swallow test. So, simply because she thinks it, doesn't always make it related to John now.
But finding where he's bleeding? They simply gave up on that.
D
Well, if it were a stupid question, I've already asked it several times and even tried to bypass that regulation by going straight to the Director of Veterans Affairs. The question isn't stupid. The answer is. lol
John failed a swallow test in mid February. By "failed," I mean the speech therapist saw him swallow a tiny bit of applesauce and wasn't pleased with how long it took him to swallow it, even though it did go down his esophagus, not the bronchial tube. So, she determined he failed it.
Once failed, the regulation says he has to sit in a machine that watches his throat swallowing through an Xray. (They keep saying "Xray," but I think it's more like a CT scan or ultrasound, since Xrays only show bones.) The machine includes a chair with little to no padding. That bedsore isn't on his left "cheek," it IS his left cheek. The last time I looked it was 5-7 inches wide and 4-6 inches deep, and that's after it had been healing for several months. There is no skin on it, so he's supposed to sit on that chair for an hour because that's what the regulation says has to happen.
He was scheduled the first time to take this test on February 23rd, but, at the last minute they decided that bedsore had to be debrided NOW! He's been swallowing since January 15th, but has been limited to ice chips and water. (Truthfully, the nurses played around so much with the water part of that, that John gave up long ago asking for water with his ice chips. So, the only time he gets water and ice chips is when I visit, or when he waits for the ice chips to melt, so he can have water with his ice.)
So, he can swallow. They just won't let him swallow because he couldn't sit for this one test. He hasn't eaten for two months now simply because of a regulation.
And, if that's not enough, he cannot get teeth until he comes home because of another regulation -- the dentist has to be vetted, but their oral surgeon won't give him teeth unless he's been in the CLC for 60 days, and he/she can finish the work before he gets kicked out at 90 days. Since dentures take time to adjust and require additional work after adjusting, he can't get teeth until he comes home, (which won't be in 90 days because they keep doing junk like this to him.)
I'd say, "God bless the almighty regulation," but I don't think God's blessing that at all. Even when he can eat, he still won't be able to really eat!
John failed a swallow test in mid February. By "failed," I mean the speech therapist saw him swallow a tiny bit of applesauce and wasn't pleased with how long it took him to swallow it, even though it did go down his esophagus, not the bronchial tube. So, she determined he failed it.
Once failed, the regulation says he has to sit in a machine that watches his throat swallowing through an Xray. (They keep saying "Xray," but I think it's more like a CT scan or ultrasound, since Xrays only show bones.) The machine includes a chair with little to no padding. That bedsore isn't on his left "cheek," it IS his left cheek. The last time I looked it was 5-7 inches wide and 4-6 inches deep, and that's after it had been healing for several months. There is no skin on it, so he's supposed to sit on that chair for an hour because that's what the regulation says has to happen.
He was scheduled the first time to take this test on February 23rd, but, at the last minute they decided that bedsore had to be debrided NOW! He's been swallowing since January 15th, but has been limited to ice chips and water. (Truthfully, the nurses played around so much with the water part of that, that John gave up long ago asking for water with his ice chips. So, the only time he gets water and ice chips is when I visit, or when he waits for the ice chips to melt, so he can have water with his ice.)
So, he can swallow. They just won't let him swallow because he couldn't sit for this one test. He hasn't eaten for two months now simply because of a regulation.
And, if that's not enough, he cannot get teeth until he comes home because of another regulation -- the dentist has to be vetted, but their oral surgeon won't give him teeth unless he's been in the CLC for 60 days, and he/she can finish the work before he gets kicked out at 90 days. Since dentures take time to adjust and require additional work after adjusting, he can't get teeth until he comes home, (which won't be in 90 days because they keep doing junk like this to him.)
I'd say, "God bless the almighty regulation," but I don't think God's blessing that at all. Even when he can eat, he still won't be able to really eat!
D
Today I walked down the very long halls to go visit John. One of my dreams has been that he'd come to meet me down those halls. So, I turned the second to last corridor, and do what I usually do -- check out what's for lunch in the cafeteria, and then look right through to see the inner garden.
I saw a guy in a wheelchair near the nurse station at the end of the hall, but there is usually at least one guy in a wheelchair near the nurses station. When I passed the caf, I saw he wasn't wearing the the maroon pajamas most wear there. Then he waved at me, and I realized that IS John! And he laughed at me for not figuring it out sooner!
LOL
I saw a guy in a wheelchair near the nurse station at the end of the hall, but there is usually at least one guy in a wheelchair near the nurses station. When I passed the caf, I saw he wasn't wearing the the maroon pajamas most wear there. Then he waved at me, and I realized that IS John! And he laughed at me for not figuring it out sooner!
LOL
M
Take those little moments and cherish them, you have both come
such a long way.
There will be more ups and downs to come, even when you are
both back at home.
I didnt realise myself just how much the past 14 months had taken
out of me. I think it's because we tend to just plod on and do what
needs to be done. But it's afterwards when emotions and feelings
which have been pushed to one side, that they tend to surface.
So yes cherish these little things, maybe write them down to look back
on and rejoice how far you have both come. Also give yourself a big pat
on the back for coping so well. It's a hard thing to deal with and you have
had to make so many adjustments. I know cos I did.
Still praying for you both and looking forward to the day he walks down
that corridor to greet you.
God bless
x
such a long way.
There will be more ups and downs to come, even when you are
both back at home.
I didnt realise myself just how much the past 14 months had taken
out of me. I think it's because we tend to just plod on and do what
needs to be done. But it's afterwards when emotions and feelings
which have been pushed to one side, that they tend to surface.
So yes cherish these little things, maybe write them down to look back
on and rejoice how far you have both come. Also give yourself a big pat
on the back for coping so well. It's a hard thing to deal with and you have
had to make so many adjustments. I know cos I did.
Still praying for you both and looking forward to the day he walks down
that corridor to greet you.
God bless
x
D
Crap! I went to the dentist and had two teeth pulled, but forgot about what novacaine does to the mouth, and why gauze in the mouth makes it useless for me to go visit John.
He's in trouble again. His blood pressure is too low, so he couldn't have PT. Probably has low BP because he's losing blood again. (He's been vertical enough later that that has stopped becoming a likely cause.) AND they found blood in his stool!
I have no idea if his doctor is still going to wait until tomorrow to do his weekly blood test, but he's gone as low as the upper 500's, so it scares me she might.
AND I can't call to find out, because gauze in my mouth. (I called John when changing gauze, but his doctor is long winded, even by my standards, so I can't hold on that long without possibility of dry socket.
I feel like we're getting sucked right back into the hellhole of a hospital, they won't do anything anyway, and neither will rehab, because rehab knows it's supposed to be the hospital fixing this problem.
Need prayers.
He's in trouble again. His blood pressure is too low, so he couldn't have PT. Probably has low BP because he's losing blood again. (He's been vertical enough later that that has stopped becoming a likely cause.) AND they found blood in his stool!
I have no idea if his doctor is still going to wait until tomorrow to do his weekly blood test, but he's gone as low as the upper 500's, so it scares me she might.
AND I can't call to find out, because gauze in my mouth. (I called John when changing gauze, but his doctor is long winded, even by my standards, so I can't hold on that long without possibility of dry socket.
I feel like we're getting sucked right back into the hellhole of a hospital, they won't do anything anyway, and neither will rehab, because rehab knows it's supposed to be the hospital fixing this problem.
Need prayers.
M
Aw Lynn what a roller coaster.
Ive been a bit like that with my aunt, panicking at every smallest
indication of something wrong.
Like why aren't you drinking enough,
why are you tired,
why are you a bit confused today
no can't have bananas there high in potassium, you haven't had any bananas have you
have you been on the oxygen today
no you can't eat jam tarts there bad for your blood sugar, maybe I should test your blood sugar
you haven't got a water infection again have you
etc, etc.
Im turning into a bit of a nag. Lol
I don't think the worry stops even when you get them home.
Still praying for you.
Ive been a bit like that with my aunt, panicking at every smallest
indication of something wrong.
Like why aren't you drinking enough,
why are you tired,
why are you a bit confused today
no can't have bananas there high in potassium, you haven't had any bananas have you
have you been on the oxygen today
no you can't eat jam tarts there bad for your blood sugar, maybe I should test your blood sugar
you haven't got a water infection again have you
etc, etc.
Im turning into a bit of a nag. Lol
I don't think the worry stops even when you get them home.
Still praying for you.
D
Praises galore:
When John came home on June 23rd, we both were sure he could take the 13 steps up to his bed and our bathroom. Technically, he did, but I had to help him up the last two steps, so he couldn't do that quickly enough to make a safe bathroom trip on his own. (We have a commode and he has his sofa, so not as bad as that sounds. lol) And when he came downstairs he needed me in front of him, just in case.
When he came home, he had no teeth, had to use his wheelchair for his first doctors appointments, but managed around the house with walkers, could make his own breakfast, but I had to carry it to the place he wanted to eat it and bring in his coffee, and his wound had been stuck at about the size of a quarter in width, depth, and length for a full month. (The nursing home simply gave up using the wound vac for the last two weeks because it stopped having a vacuum after half an hour or an hour.)
When I wrote my last post on here, I didn't think he'd be home until September to November. Come to think of it, at the last post I wrote, I thought he'd be on catheters all his life, but God did do the miraculous and his doctor had to come in to see him specifically because no one's bladder works in a mere 6 hours after being on a foley for six months.
It feels like it's taken the longest time to recover since then, but here is where he is today -- August 21.
-- Dentures take some adjusting. So he couldn't eat a big slab of chicken breast right away. He was still on soft foods. (Ground meat, over cooked veggies, easy to chew desserts, etc.) Yesterday he ate lettuce. This is big! This is something you really have to rip apart with your teeth. So, not only does he have teeth, he can use them pretty well too. (Probably take a week or two before he goes for a big chunk of chicken breast.)
-- Thursday was a big day. He had an appointment to go see the wound care nurse. Two nurses had put their heads together to figure out how to keep the wound vac working for two days. (His in-home nurse came every other day, so it had to work well enough that it wasn't my job to make it work in between.) They did figure it out, and he got disposable wound vacs that lasted one week each. For the first two weeks at home, the size of the wound didn't change. To be clear, he still has an insy left cheek, so it's going to take a long time to find out if it refills with the usual stuff our hind cheeks are filled with, but inside that insy is the wound itself. It now looks like half of a pitted cherry. Half of the end of a Q-tip fits into it. HE'S OFF THE PUMP!!!
For the first time since November he is unfettered. No tubes putting stuff into him. No tubes taking stuff out of him. AND, he doesn't have to carry around something about the size of a small pocketbook filled with coins around his neck.
He's free! No more hearing ticking noises that hint that, if left unchecked, will become a relentless beep beep every ten seconds. (We actually had names for those ticking noises that ranged from geiger counter, to cat purring, to "it's coming." It's bad when you know the difference in the sounds of a machine that doesn't technically malfunction until a beeping noise, but still can tell when it's getting close to that.) I am now able to change his bandage. No more need for in-home nurse. (Although we will miss her. She had the same taste in music as John. If we weren't disabled, she would have become a friend.)
And, we were told he'd need a skin graft after the wound healed, but not to worry. The VA hospital would do it. Ummm, that was our worry. They screwed up everything else up, couldn't take care of him the last time, and how could we not worry they would just screw it up even more? So I spent the last couple of months talking the hospital that gave him the bedsore to be the people who would fix him, if it was needed. Last week, they finally answered my request. Without saying they were guilty, they would have him see their plastic surgeon for a consult for free. First step and it was a long process to get that far.
Thursday, his wound care nurse said he doesn't need a skin graft! Yay! Preparation not needed!
After the wound care appointment and a CT scan of John's lungs again, (his mother had TB, so both John and his brother have had a dark spot in their lungs since they were kids. This alarms doctors every few years, so they have to make sure it's not something else. It isn't), we walked down to the other end of the hospital to find Yen John's first PT to thank her.
Walked. As in, he uses a cane now. We knew we were near the PT room, but weren't quite sure where it was, when the elevator opened and out walked Yen! Yen is the woman who first got John to stand, to be able to roll on his side, and who saved him from incompetent nurses who pretended they didn't know how to use a lift so sandwiched John in his with nothing but a poop bag stopping his chest from hitting his knees. She is the one who fought to get him a wheelchair he could lean back in. She is the one who fought for him to keep getting better despite what was happening around him. And in true fashion, she got so excited to see him, told who she had talked to to find out how he's doing, while hugging him, and then got serious and told him he sounded winded. (Yeah. Cane. First week using just the cane and he just walked the entire length of a hospital corridor, so winded. lol) And then she gave him tips on how to protect his wound before he showed her no wound vac. And she got to see him with teeth. One of those magical moments when words just disappeared... except "Thank you." (Thank you is so often just not enough, but all we can offer.)
-- He stopped needing his PT and OT a couple of weeks ago, which is a good thing, since his PT had him walking up and down the block in the walker at noon during heat waves. And his OT had him climbing up and down our steps during those same heatwaves and the only a/c we have are window units, so our upstairs hall and bathroom can get hotter than outside. (Walking up our steps is like walking out of a pool. The first floor's ceiling is the water line. You can feel the hot air exactly at that level.)
What clued the PT that he wasn't needed anymore was the day before he came, John and I walked over to our local Rite Aid, which is the length of walking down our street away, then he walked through it to buy stuff, then after we bought the stuff, we walked across the street into our local park and enjoyed some relaxing time under the trees. (I needed to rest by then more than John.) And then we came home. PT had him walk down the block. What John did that day was the equivalent of walking around two blocks. lol
-- The wheelchair came out of the trunk in our car. The walkers are put away. John is using a cane. Out of the house. In the house he leaves it behind. The first week he was home, he went grocery shopping with me in his wheelchair. Last week we went shopping in two different stores and he walked using the cart as his canoe. (We have room for the groceries again! Yippee! lol)
-- John is able to take showers upstairs now. He took his first shower in eight months three weeks ago. (He washed at the sink before that.) The commode hasn't been needed in three weeks. Stairs still make him nervous, and muscle memory has been replaced with concentration, so he doesn't sleep upstairs yet. (He can't sleep at night, and despite me telling him I can wake up, help him, and then go back to sleep, he doesn't want to bother me.) I give that 1-2 more weeks.
-- Grilling. This was his big dream when he came home. He wanted to make a turkey breast the first weekend he was home, but I had to negotiate that down quite a bit, because I knew I'd be the only one carrying stuff, and by then I was utterly exhausted. I talked him down to turkey burgers. It was a disaster. He can't just grill meat. He has to grill veggies too. And his eye-hand coordination was terrible. He meant to pick up a half onion on the grill to turn it over. Instead I got hit by the onion. lol (I thought it was funny, but he was angry at himself.) We did have the turkey burgers that night, but so many things went wrong, he felt like a failure.
And then last night we planned on turkey burgers on the grill again. This time he set up the charcoal himself (including lugging the bag of charcoal briquets.) The veggies were the size he wanted because he cut them himself. And, sure enough, more grill problems. For some reason the briquets didn't light right, so he got the side ones burning but not the bulk. (He grilled successfully last week, so this is just working out the kinks of a new grill. We just bought the charcoal grill the end of last summer, so we forgot how to charcoal grill.) He wanted to toss the whole grill, but didn't. Instead we (and I mean WE) brought everything in and he did the rest of the work for dinner. He used the pancake griddle for the veggies and the stove top for the burgers. The only time he wanted my help is the same part he has always had me do -- prepare the rolls. (Split them and add the mayo, tomatoes, and lettuce.) What he did in the kitchen on his own (and after sweating an hour next to the uncooperative grill) was the equivalent of what he'd do when all the dishes are ready for our Thanksgiving dinner. This was Chef John fully in charge of a full course dinner. (The peaches were roasting on the griddle while we ate dinner. THAT massive and that good.)
-- To keep his wound healing, he's supposed to be eating lots of protein. And he is. Protein in every meal, and protein powder in milk shakes. (Milk has protein too, but my job is to keep us working right through fiber. So strawberry, blueberry or peach shakes.) We both feared with this much eating he'd gain weight again. Noper! Same weight as when he came home.
He's back! A little slower than before, but that is deliberate. Before he was rushing through life. Now he is living it deliberately. He's not 100% his old self, but then again there is a quarter of him gone now. (He lost 90 pounds because of all that happened. lol) He still has a ways to go. His bed is calling him. I'm now a bit nervous because I'm NOT nervous driving with him in the car. Eventually, he has to drive again. (He thinks this is optional, so he doesn't care. I do, but mostly because he needs all his independence back.) It's little stuff left.
God is sooo good!!!
When John came home on June 23rd, we both were sure he could take the 13 steps up to his bed and our bathroom. Technically, he did, but I had to help him up the last two steps, so he couldn't do that quickly enough to make a safe bathroom trip on his own. (We have a commode and he has his sofa, so not as bad as that sounds. lol) And when he came downstairs he needed me in front of him, just in case.
When he came home, he had no teeth, had to use his wheelchair for his first doctors appointments, but managed around the house with walkers, could make his own breakfast, but I had to carry it to the place he wanted to eat it and bring in his coffee, and his wound had been stuck at about the size of a quarter in width, depth, and length for a full month. (The nursing home simply gave up using the wound vac for the last two weeks because it stopped having a vacuum after half an hour or an hour.)
When I wrote my last post on here, I didn't think he'd be home until September to November. Come to think of it, at the last post I wrote, I thought he'd be on catheters all his life, but God did do the miraculous and his doctor had to come in to see him specifically because no one's bladder works in a mere 6 hours after being on a foley for six months.
It feels like it's taken the longest time to recover since then, but here is where he is today -- August 21.
-- Dentures take some adjusting. So he couldn't eat a big slab of chicken breast right away. He was still on soft foods. (Ground meat, over cooked veggies, easy to chew desserts, etc.) Yesterday he ate lettuce. This is big! This is something you really have to rip apart with your teeth. So, not only does he have teeth, he can use them pretty well too. (Probably take a week or two before he goes for a big chunk of chicken breast.)
-- Thursday was a big day. He had an appointment to go see the wound care nurse. Two nurses had put their heads together to figure out how to keep the wound vac working for two days. (His in-home nurse came every other day, so it had to work well enough that it wasn't my job to make it work in between.) They did figure it out, and he got disposable wound vacs that lasted one week each. For the first two weeks at home, the size of the wound didn't change. To be clear, he still has an insy left cheek, so it's going to take a long time to find out if it refills with the usual stuff our hind cheeks are filled with, but inside that insy is the wound itself. It now looks like half of a pitted cherry. Half of the end of a Q-tip fits into it. HE'S OFF THE PUMP!!!
For the first time since November he is unfettered. No tubes putting stuff into him. No tubes taking stuff out of him. AND, he doesn't have to carry around something about the size of a small pocketbook filled with coins around his neck.
He's free! No more hearing ticking noises that hint that, if left unchecked, will become a relentless beep beep every ten seconds. (We actually had names for those ticking noises that ranged from geiger counter, to cat purring, to "it's coming." It's bad when you know the difference in the sounds of a machine that doesn't technically malfunction until a beeping noise, but still can tell when it's getting close to that.) I am now able to change his bandage. No more need for in-home nurse. (Although we will miss her. She had the same taste in music as John. If we weren't disabled, she would have become a friend.)
And, we were told he'd need a skin graft after the wound healed, but not to worry. The VA hospital would do it. Ummm, that was our worry. They screwed up everything else up, couldn't take care of him the last time, and how could we not worry they would just screw it up even more? So I spent the last couple of months talking the hospital that gave him the bedsore to be the people who would fix him, if it was needed. Last week, they finally answered my request. Without saying they were guilty, they would have him see their plastic surgeon for a consult for free. First step and it was a long process to get that far.
Thursday, his wound care nurse said he doesn't need a skin graft! Yay! Preparation not needed!
After the wound care appointment and a CT scan of John's lungs again, (his mother had TB, so both John and his brother have had a dark spot in their lungs since they were kids. This alarms doctors every few years, so they have to make sure it's not something else. It isn't), we walked down to the other end of the hospital to find Yen John's first PT to thank her.
Walked. As in, he uses a cane now. We knew we were near the PT room, but weren't quite sure where it was, when the elevator opened and out walked Yen! Yen is the woman who first got John to stand, to be able to roll on his side, and who saved him from incompetent nurses who pretended they didn't know how to use a lift so sandwiched John in his with nothing but a poop bag stopping his chest from hitting his knees. She is the one who fought to get him a wheelchair he could lean back in. She is the one who fought for him to keep getting better despite what was happening around him. And in true fashion, she got so excited to see him, told who she had talked to to find out how he's doing, while hugging him, and then got serious and told him he sounded winded. (Yeah. Cane. First week using just the cane and he just walked the entire length of a hospital corridor, so winded. lol) And then she gave him tips on how to protect his wound before he showed her no wound vac. And she got to see him with teeth. One of those magical moments when words just disappeared... except "Thank you." (Thank you is so often just not enough, but all we can offer.)
-- He stopped needing his PT and OT a couple of weeks ago, which is a good thing, since his PT had him walking up and down the block in the walker at noon during heat waves. And his OT had him climbing up and down our steps during those same heatwaves and the only a/c we have are window units, so our upstairs hall and bathroom can get hotter than outside. (Walking up our steps is like walking out of a pool. The first floor's ceiling is the water line. You can feel the hot air exactly at that level.)
What clued the PT that he wasn't needed anymore was the day before he came, John and I walked over to our local Rite Aid, which is the length of walking down our street away, then he walked through it to buy stuff, then after we bought the stuff, we walked across the street into our local park and enjoyed some relaxing time under the trees. (I needed to rest by then more than John.) And then we came home. PT had him walk down the block. What John did that day was the equivalent of walking around two blocks. lol
-- The wheelchair came out of the trunk in our car. The walkers are put away. John is using a cane. Out of the house. In the house he leaves it behind. The first week he was home, he went grocery shopping with me in his wheelchair. Last week we went shopping in two different stores and he walked using the cart as his canoe. (We have room for the groceries again! Yippee! lol)
-- John is able to take showers upstairs now. He took his first shower in eight months three weeks ago. (He washed at the sink before that.) The commode hasn't been needed in three weeks. Stairs still make him nervous, and muscle memory has been replaced with concentration, so he doesn't sleep upstairs yet. (He can't sleep at night, and despite me telling him I can wake up, help him, and then go back to sleep, he doesn't want to bother me.) I give that 1-2 more weeks.
-- Grilling. This was his big dream when he came home. He wanted to make a turkey breast the first weekend he was home, but I had to negotiate that down quite a bit, because I knew I'd be the only one carrying stuff, and by then I was utterly exhausted. I talked him down to turkey burgers. It was a disaster. He can't just grill meat. He has to grill veggies too. And his eye-hand coordination was terrible. He meant to pick up a half onion on the grill to turn it over. Instead I got hit by the onion. lol (I thought it was funny, but he was angry at himself.) We did have the turkey burgers that night, but so many things went wrong, he felt like a failure.
And then last night we planned on turkey burgers on the grill again. This time he set up the charcoal himself (including lugging the bag of charcoal briquets.) The veggies were the size he wanted because he cut them himself. And, sure enough, more grill problems. For some reason the briquets didn't light right, so he got the side ones burning but not the bulk. (He grilled successfully last week, so this is just working out the kinks of a new grill. We just bought the charcoal grill the end of last summer, so we forgot how to charcoal grill.) He wanted to toss the whole grill, but didn't. Instead we (and I mean WE) brought everything in and he did the rest of the work for dinner. He used the pancake griddle for the veggies and the stove top for the burgers. The only time he wanted my help is the same part he has always had me do -- prepare the rolls. (Split them and add the mayo, tomatoes, and lettuce.) What he did in the kitchen on his own (and after sweating an hour next to the uncooperative grill) was the equivalent of what he'd do when all the dishes are ready for our Thanksgiving dinner. This was Chef John fully in charge of a full course dinner. (The peaches were roasting on the griddle while we ate dinner. THAT massive and that good.)
-- To keep his wound healing, he's supposed to be eating lots of protein. And he is. Protein in every meal, and protein powder in milk shakes. (Milk has protein too, but my job is to keep us working right through fiber. So strawberry, blueberry or peach shakes.) We both feared with this much eating he'd gain weight again. Noper! Same weight as when he came home.
He's back! A little slower than before, but that is deliberate. Before he was rushing through life. Now he is living it deliberately. He's not 100% his old self, but then again there is a quarter of him gone now. (He lost 90 pounds because of all that happened. lol) He still has a ways to go. His bed is calling him. I'm now a bit nervous because I'm NOT nervous driving with him in the car. Eventually, he has to drive again. (He thinks this is optional, so he doesn't care. I do, but mostly because he needs all his independence back.) It's little stuff left.
God is sooo good!!!
