John -- Still going on, but not so urgent anymore

Depleted · Apr 28, 2016

(The last thread was a plea of desperation. This is still about John, but not as desperate anymore.)

Tomorrow, John (hubby) is going to his infamous/famous swallow test. I'm sure he can swallow. Thought it would be good to pray for as little pain on his tush as possible (given it's also the day they repack the wound.) And, yeah, that he can eat by the end of the day.

Also, he really has trouble with taste. (That's why I know he can swallow. He's been sucking ice, drinking water, and sucking on sugar-free candy for quite some time.) Every time he puts something different in his mouth, it looks like he got one of those earwax jellybeans from Hogwarts. When water makes you do that, you can blame it on how bad Philadelphia water is, but the hard candy was the candy he liked before all this happened. And, yeah, mouthwash tastes bad, but he used it every morning before this happened without making faces. Kids who have been tube fed for a long time hate everything they try afterward too, so it is a thing. But to finally be able to eat again but all food taste nasty just seems too much.

So tomorrow is the big day. Prayers please.

levi85 · Apr 28, 2016

Lord we pray let you bless this, in Jesus name, Amen!

crmvet · Apr 29, 2016

Isaiah 53:5

Depleted · Apr 29, 2016

John passed the swallow test!

So far he can only swallow things as thick as nectar, and the order won't go into the system until Monday (probably), BUT he passed. And the speech therapist thinks he'll be free to eat anything he wants within a week, except for that obvious flaw -- no teeth. (Taken out to protect his new valve back in January.) But, oddly enough, they can even teach him how to gum food. Who knew?

He wants coffee first, but coffee as thick as nectar and as tastey as he likes it, (he likes only the good stuff) is going to be tough to figure out how to do.

He passed the swallow test! A mere 23 weeks since the last time he's eaten. He says that was the best pudding he ever had. The doctor performing the test told him only because he hasn't eaten for so long. She thinks it's disgusting. lol

And, ends up that vicious chair everyone has been protecting him from all along was easier than his favorite chair back in the ICU. (They had two chairs. His favorite chair and the torture chair. lol)

He passed the swallow test!

Yay, God! Thank you, thank you, thank you!

wwjd_kilden · Apr 29, 2016

yaaaaaaay !

PennEd · Apr 29, 2016

Praise the Lord Lynn! So happy for this victory for you both.

Depleted · Apr 29, 2016

I feel like the day we got married. I know this smile stuck on my face is going to hurt in a few hours, but when I stop smiling, and forget I stopped, I go right back to grinning again!

Flickers · Apr 29, 2016

Prayers for John that everything will work properly in his body. Sounds terrible

psychomom · Apr 30, 2016

For Your righteousness, O God, reaches to the heavens, You who have done great things; O God, who is like You? (Ps 71:19)

thank You, faithful Father

Depleted · Apr 30, 2016

John's absolute favorite breakfast is eggs and cheese mixed in with grits, some sausage on the side, with a nice cup of coffee.

John's first meal in 161 days was eggs, cheese, grits, sausage and fruit nectar. All pureed, of course, so looks like baby food, but I don't think any of that, but fruit nectar, is in baby food. I could hear his excitement over the phone. lol

I work hard at finding him THE Christmas present to get him this excited. I have never found that great of a present. It's like he's a kid in a candy store with free reign. Feels like Christmas morning.

Each portion was no more than a quarter cup of food, and he couldn't eat it all. He was still happier than I've heard him in ages, and he was so very excited to tell me he walked.

(I don't cry, so why am I using this many tissues this morning?

)

Shilo · Apr 30, 2016

Thank you LORD for you mercy and grace to John and is family. Amen.

Depleted · May 10, 2016

John needs to get off the foley soon and last night it pinched for a mere minute and his bladder hurt so bad. He needs to get off the foley, but that in itself scares me because his bladder may have forgotten how to work after half a year. I don't want him stuck like this forever and yet the other choice is going to be excruciatingly painful.

oldethennew · May 10, 2016

he can make it through Lynn, with Jesus and you by his side...

Depleted · May 17, 2016

Our all kinds of excitable news got crashed in less than a day.

Excitable news:
1. John was only given 90 days at the VA short-term rehab and his first day was March 4th, sooo, traditionally his last day ought to be June 4th. But it's not, because those days he spent in the hospital don't count, so it's closer to "the middle of June." I picked out the next rehab/nursing home already, but there was a question of how much we'd be charged for his stay in there. (He has two healthcare insurance plans. The first one is Veterans Affairs, which, for our income level, is free for all things except prescriptions sent to our home. (Not home, so everything is free now.) The second is Medicare, which is the US's version of government-sponsored healthcare for disabled people or retired people. John is officially retired now. Everything is with co-pays, and the co-pays fluctuate. In this case, it fluctuates depending on how long he's in the nursing home. And 1-60 days is "we can pay that," 61-90 days is "make us gulp, but we can scrape that up to afford that, maybe" and then after 90 days it's $650 a day. (Funny thing, about that number. Not too many people wouldn't choke to grasp that -- rich or poor. But, let's just say each day cost 2/3rds of a month of my income on Disability, so we're choking much more than rich people would.) Lady at nursing home says they're happy to take him, however that's a mere $650 a day!

Sooo, where is that excitable news? Why isn't that the one that made me crash? God's track record!

I learned that last Thursday, tried to find out what that VA says, (because Nursing Home Lady never had someone come from the VA nursing home so she wasn't 100% sure if she was right), couldn't, so knew I had to face a whole weekend with that sitting on my mind.

So, God's track record. Every single time, news like that turned me into an emotional jellyfish in the last 35 years, God has worked around the original news to give us something we really could afford OR he veered the course in such a way that we have never had to afford something we can't live without but can't pay for. (Seriously. Got the cost of just one of John's operations in the last couple of weeks, and just the operation -- not counting anesthesia, Xrays, or the ICU before and after cost $290,000! That's roughly my entire monthly income for a mere 400 months! lol So priceless operation cost us $0!) God's like that! I knew, somehow, someway, God would provide a walk-around, so I didn't panic.

AND on Monday at roughly 5:45 PM, John's doctor told me that when he gets transferred, he's on Day 1, not Day 91, so we can afford two months without breaking a sweat.

2. That's the other part. Not likely John will be there for two months! He's getting better too fast. His PT and OT thinks he should only be there 2-4 weeks! THAT is the excitable news! John might well be home by The Fourth of July! I was hoping before the Christmas holidays, but he might be back in time to see the garden.

BUT that got crushed this afternoon.

(This is the part where we really, really need prayers.)

He might be home by the Fourth of July. And we might have a wheelchair lift on the front of our house by the Fourth. (BTW, for non Americans, The Fourth of July is our Independence Day, so that's why it's capped.) Big problem!

SMALL house and we can't afford to move. The door to the front porch is 35 inches. The door from our front porch into our house is 32 inches. There's also a step right there. That's also wide compared to the room we have between our sofa and the TV stand, which is wider than the space between the TV stand and our way into the kitchen/John's computer area (formerly called a dining room.) There isn't enough room for a wheelchair in our livingroom. Our house is 16 feet wide including the steps. And even if he could get in the house, he can't get into the garden, because we have steps there too, and roughly two feet to get to them diagonally.

We've been planning on him walking by the time he came home. There were only three physical activities (not going to the other one) John loved to do before all this hit -- go grocery shopping, cook, and enjoy the garden, which for him is to grill in a manly-kind of way. (We went charcoal grill again last year, so briquets are back in our life. His big dream is to roast a turkey on it.) We already were disabled before this hit. He may come home unable to do the three things he could only do to begin with. Never planned, never conceived he'd be such an invalid after all this. (And I planned on putting his bed in the livingroom and have a commode for him, so it wasn't like I thought he'd be fine. Just able to walk slowly and then gain more strength to do the steps a month or two later.)

And, yes! Of course this changes nothing in our relationship, but what is your life if everything you truly loved to do physically was taken away from you?

I did suspect I'd still have to go grocery shopping alone when he first returned home, but grocery shopping is our favorite day of the week. It's what others consider "date night." Date night without the date going with me really kills that concept of date night. Then it just becomes grocery shopping.

We heard this from John's PT when the simple question was "How long do you think he'll be in the next rehab?" I had a big smile on my face when I asked, because I thought he'd be talking about John walking into our home. I was blank faced when I left John in that room, and after getting my sweater from his bedroom, I came back with more questions.

Tomorrow is the six-month anniversary of "indigestion." (He was having a heart attack but googled, so we both thought it was just indigestion.) Saturday is the six-month anniversary of him going to the ER and finding out he was in the middle of a massive heart attack. (Really weird that it's the same days of the week too.) And yet today is the first day anyone who truly knew John's capabilities has brought up the idea that he might be coming home as Wheelchair Man. He will probably be able to walk around using a walker around the house, but we don't have room or strength to get him out of the house in a wheelchair.

He can't be Wheelchair Man! Our only home can't support that and I can't imagine what his life becomes if there is absolutely nothing that he can do that he loves to do anymore. He already was down on how much he could no longer do. I do understand he won't be alive in 20 years. God will be kind if he makes it for ten years. But is that kind to leave a guy physically able to move but no strength to do anything?

Please pray he comes home with at least the abilities he used to have. I'm not asking for up there with having picnics in the park -- just grocery shopping and time in the garden to grill.

And because this isn't enough to ruin our excitable-news, today was also the day he was taken off the foley. He's trying to "go," but going isn't happening the first time. He's been preparing for this mentally and spiritually for the last couple of week,s but he is discouraged when they have to catheterize him. The likelihood of this working is as slim as everything else he's been through, BUT he's gone through everything else because God is doing his thing, so please pray God does his thing for this one too.

And, I'm beginning to think I should NEVER have the cement contractor doing work for me. I asked him to just do our steps last September. We wanted our sidewalk fixed too, but our steps broke, so we couldn't afford both. The steps were done when I came home the day John went into the ER and then had emergency heart surgery.

Someone tripped on our sidewalk last winter and is suing us, (she and our insurance company are still fighting that one. I've left it for the insurance company to deal with.) Because of that, we both decided we have to get the sidewalk fixed. No sidewalk at all out front right now and our sidewalk is our front yard, so I couldn't figure out how to go grocery shopping and then work around the yellow tape all the way around what used to be our sidewalk, so couldn't do that today as planned. And, peachy keen. I have a doctor's appointment on Thursday morning that I can't dismiss, and no idea how to bring in groceries tomorrow because of the fresh cement. So, twice the cement contractor came to do what I wanted him to do on days that ended up being terrible days!

May our back steps and backyard never EVER need to be fixed!

(Sorry. Got to do some more chores and make dinner, so can't proof this.)

Depleted · May 18, 2016

FAST answered prayer! Honestly, I wasn't ever expecting John to be able to pee again without a catheter. His doctor held out so little hope, I just didn't expect him to. He was catheterized twice before he peed on his own!

He called and told me. Then he had to ask, "What? What?" because of the silence. It's really hard to laugh and cry at the same time. I was trying to be able to talk to him, but my throat was choked up. lol

He pees! Up there with He walks! lol

This is a miracle! (Which reminds me, I have to get him some tissues when I go in. lol)

oldethennew · May 18, 2016

praise God for being able to pee...been there, done that...

Lynnnnn,

some 100% all natural fruit juices, organic is really good, will greatly benefit John...
just a couple of shots a day will make a great difference for his healing organs...

Depleted · May 18, 2016

oldethennew said:

The first thing he could swallow after getting off the vent onto a trach was ice AND water. Strangely, he failed the swallow-water part of the swallow test, but could swallow applesauce. Did you know there is something called "thickened water?" (Still blows my mind. How do you thicken water? Certainly not by reducing is like tomato sauce.

But his coffee is made to thicken in water, so at least I know they add something granular in it.) He can eat now, but he can't swallow thin liquids.

You should see his coffee. It reminds me of that stuff the hobo was drinking on top of the Polar Express. I even wait for the socks to be on the bottom.

His new preference for liquids (and all thickened) is water (with a little lemon in the undertaste. Just found out today he's not keen on my homegrown chamomile though), apple juice, and then coffee. But he really doesn't get much choice for what to drink. He's been telling them since he could eat that he doesn't like the milk, but they keep bringing it, (and then toss it, which seems a shame, except it's thickened, so who would drink it anyway? We've been poor enough to miss a meal or two. Not poor enough to drink that stuff.) He hasn't had coffee today. He asked at breakfast and lunch, (I tried a few times at lunch, but either they kept forgetting it or the caf was closed.) And they never brought him anything to drink at breakfast.

Worse yet, they are darn sure he "suffers" from low blood pressure. Well, he does for now, but it was too high before, so we gave up salt, and now he hates the food (couldn't even figure out what it was other than not what he was supposed to get lol), because McDonald French fries aren't that salty, but he's hungry so he ate it anyway.

And I know what you're thinking, "bring some from home." I've been planning on him eating again without teeth since January, so I worked at making meals he could eat. I brought the squash soup. They told me if it goes in the resident's frig, his name and date had to be on it. I did that, and forgot to take it until the next day. Lunch was delicious, so he didn't have room to eat it, so I put it back in. Next time I went to get it, it was gone.

I asked. They repeated, "Everything is thrown out unless his name and date is on it." When I told them I did that, then the rest came out -- EXPIRATION date! Squash soup! No meat in it so could have lasted weeks.

When I bring him food, he's too full to eat it. When I don't bring him food, they don't give him the right meal and don't give him everything. His attitude is always, "it's all right." Or "Take me home."

I told him today, I still have some of the bolognese I made for him back in February. (First time I ever made it. A lot of work. So I froze it to make sure he gets at least one meal from it.) He tells me it's going to get freezer burned so eat it. I keep thinking about it, but I'm afraid the day after I eat it is the day before they forget to feed him dinner again. (Happened once.)

It's likely he goes into another nursing home, (close enough to home that we consider it "our neighborhood"), in three weeks, so we're just seeing how much progress until then. No better but no worse than this one. Only thing I worry about is the nursing staff. At least at the VA not too many are going to put up with, "Open wide, honey. Oh, that's soo sweet. Look what you did" antics. I did notice the new one has much more of that. (Why do nurses think they're taking care of children just because it's an old person in a wheelchair? The body goes. Not the mind or personality.) But the newer home looks nicer. More homey -- in a convent kind of way. (Sparse, but huge bedrooms. Real comforter-blankets, not hospital version. PRIVATE bathroom -- and hopefully just in time. lol) The PT room is bigger. I can't imagine the staff would be nicer though. But they don't look so harried.

Mostly I'm counting on this:
"He's having a massive heart attack. We will try the best we can, but..." (Later, they told me he has a 10%-15% surviving that night.) He lived.

"This is the biggest ICU in the city. All the beds are filled. Many have just had a heart attack, but your husband is our sickest patient. He has a 50% chance of surviving today." He survived and he survived his kidneys shutting down.

"We will try to take you off the foley, but you've been on it for six months now. Your bladder hasn't had to work in six-months. I tell most patients that this is a weaning process that will hopefully work in three days. But you aren't most patients. I'm not sure you'll ever be off a catheter." Ha! Less than a day.

Most people with a heart attack get to go home within two weeks. He's not most. BUT most people with a heart attack don't have God planning the steps just right and with a little teachings on patience (okay...a LOT -- a WHOLE LOT) along the way either. And John reminded me yesterday how his stubborn-determination works.

We both have stubborn-determination, but it's totally different. Mines the kind who will take it all the way to the Director of Veterans Affairs to get my husband to bypass a usually-good regulation. (It didn't get bypassed, but it got back on track to happen.) He kind of got upset with me for making such a fuss. (Not so upset when I told him every time the nurse in charge of his team came in to tell him of the progress for that swallow test it was the same day I heard back from someone higher up in the chain of command about why I can't get that test bypassed. I thought it was a coincidence the first time. Not so much the fourth and last time the day before the test. lol)

His stubborn determination isn't food, nurses deciding to schedule stuff to fit their moods instead of the patient's needs. His is, "Yes, I felt depressed and defeated about needing a wheelchair at home for all of 30 seconds. I've been stopping before my last ounce of strength. I've been working at 90%. I can do better. I will do steps before I leave here. I will do steps easily before I come home."

Two days ago, his OT asked if he could do 15 minutes of spinning. (Spinning like "spin classes," but he's working his arms, not legs.) He told him he could do 13 and he did. I asked him why he didn't just go with 15 minutes and he said it's like quit smoking cigarettes. Failure is an option, but every failure is a weakening. The memory stays, so it's just a little harder to try again. Failure is an option, but he wanted more success than failures. Today, he told his OP "15 minutes," and did it. Two days ago he did his leg workout with three pound weights on his ankles. He did the same thing today with seven pound weights.

He used to be a bodybuilder. He's got "muscle memory" and a lifetime of memories on how to exercise right to go with his dogged determination too.

He peed. God is doing way too much supernatural to dismiss any of this as coincidence. And John is the biggest fighter I know. The only problem we'll have with his wheelchair is where to shove it somewhere in this overcrowded house in case someone breaks a leg or hip ten years from now.

His wheelchair, his pillow wedges from back in the days when he had to be moved often to avoid bed sores, and his walker are his to bring home. Some day we're taking the pillow wedges to the eighth floor ICU in the VA hospital to thank the nurses and doctors there again, and to give them those wedges. Because of all things, the VA won't spring for wedges for their ICU, but they will give patients them to take home. (The nurses salivated over those wedges, they loved them so much. John hates them, because they remind him of a time he was so helpless someone else decided when he'd move.)

I was so depressed yesterday afternoon when I still had to run errands, and so happy today, that I replayed the album I was listening to yesterday just to make sure it didn't turn into one of those songs/albums I can't listened to because of what was happening when I heard it once.

As rednecky as it sounds, (double funny because neither one of us drink at all), "I Drink Alone" by George Thorogood just became a significant song to me. LOL

Miri · May 18, 2016

He peed. Lol

I don't think so many people have rejoiced over such a simple thing.

Praise God.

Its moments like this that make us all realise how much we take for granted and that
the small things in life are so important to us. Lynn whether you know it or not
God working through you both and on you both. He us using you as a living testimony
to others.

God bless
x

Philippians 4:12-13 NLT
[12] I know how to live on almost nothing or with everything. I have
learned the secret of living in every situation, whether it is with a full
stomach or empty, with plenty or little. [13] For I can do everything
through Christ, who gives me strength.

oldethennew · May 18, 2016

oh yes, how I love the wedges, they always gave me a lift...

still use them....

Depleted · May 18, 2016

Miri said:

When I went in to visit him, a nurse was tending his wound. We're both considered sweet and funny. (I just can't see me as sweet.) We had her stopping to chuckle a few times.

First because we both did our Happy Dance over peeing.

Second, because his wound vac literally acts like a vacuum, so he lets them know when they got it right. It has become a feeling of good-thing for him, because that working means his wound is healing double-time.

So I told him, "I hope you don't really love that feeling too much because THAT I won't do for you when you come home!"

She cracked up laughing over that. She just faced the opposite of what I'm going through. Her brother had cancer and it was all downhill from there. In her life, the ICU was the second worst part. He died last week. Monday she had just gotten to that spot where she was pretty sure she wasn't going to burst out crying in public. (We were talking about the relief of getting home before the cry hit.) Today I got her to laugh. It doesn't bring her out of the sorrow, but a tiny moment when the world continuing might be okay anyway.

John -- Still going on, but not so urgent anymore

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