NEED PRAYER NOW

Miri · Dec 29, 2015

Hi Lyn a good natter means to have a good chat, gossip, chinwag,
discussion etc. Lol. I've never thought about the "good" bit. It is
just a terminology like saying having a good old time etc.

Maybe we can start a Uk/USA translation post Lol.

Praying everything continues to go well.
I posted a reply about my aunt of the other thread I started so that it
doesn't get confused with your thread.

Depleted · Dec 29, 2015

Back to depressed. I know he's still getting better. After all, he lasted through the night without a vent, but that was it. His heartbeat was rising, he wasn't breathing well, didn't have the energy to clear out his lungs, and he was losing ground, so they put him back on.

He didn't sleep well last night, for obvious reasons, so that could be the reason, but they also put him back on the sedatives, to calm him down. He was back to before Christmas. Kind of in and out of it, more out, than in.

If it's not too busy, (and remember most people really, really do not want to end up getting emergency surgery during the holiday week, so hopefully it won't be too busy, but stress from the holidays often cause things like this, so it could be busy), they will put him on a trach later on in the week. At least with a trach he can use his throat for liquids, and maybe some food. (And by food, I'm thinking broth or Jell-O, not food that sticks to your ribs. Either way, that won't be happening until next year anyway.)

I gave him two pep talks when he was semi-lucid. After he went through treatment, he wanted to see why our car stopped working. The car was a city-block away. (Eight city-blocks = 1 mile.) He was so exhausted just getting to the car, he was sweating. (In early May. It's not cold in May, but it's not hot either.) He sat in the car for 20 minutes to catch his second wind. But since then, he can walk that distance, and even walk all the way around our superstores, so he faltered, but did get better after that. This is like that.

And, I told him he has been steadily taking two steps forward and one step back. This is just the one step back. He really needs to have the will to fight this battle, and I didn't want to have him too discouraged.

BUT, sometime -- when he gets his brain back and thinks this out -- that one gigantic fact is going to slap him in the face too. It's one thing to recover from a massive heart attack. It's quite another thing to recover from one when you already have CFS, polyneuropathy so bad the front third of your feet are too numb to feel the ground when you walk, (you need three things to walk easily -- eyesight to judge distance and steps, constant micro adjustments in your back to maintain balance, and feeling in your whole foot to know what you're stepping on. Lose any of those three and walking gets 1-3rd harder for you than anyone else), AND he has something like palsy, where he has very little balance to begin with, (which also cuts back on his back having the ability to micro-manage the balance issue.) He already falls about four times a year. Without me there to keep tabs and catch him when he starts going -- and all I have to do is grab him, and he knows he's safe and can mental adjust to where up and down are again -- I have absolutely no idea how he's going to do learning to walk again.

I have absolutely no idea how he can ever recover with CFS. The nurses and doctors keep saying he seems to be effected harder with the pain meds and sedatives, even when they're stopped. No, not as bad as they think. He often looks like he's living without sleep for three days, even when he sleeps more than most. That IS CFS at it's finest. Fatigue! What he lives with even before the heart attack. Worse yet, anything new or that causes exertion, (like say a heart attack or simply removing a vent tube), is going to cause achiness throughout his body. When he takes a shower, he spends the night quietly moaning while watching TV. (He judges how bad it is by what feels like parked on his chest. It's not too bad, if it feels like a VW Bug parked on his chest. Very bad when he says, "Bus driver! Move that bus! No wonder a heart attack didn't feel too bad for him to think it was a heart attack.) A shower and then a trip grocery shopping means three nights like that. (The grocery shopping is worth-it pain for both of us. That's our excitement for the week. lol)

And this is the guy recovering from a massive heart attack. I know he will live. I fear he will hate that.

Depleted · Dec 29, 2015

Miri said:

Best use of that word I knew was something an old VP of ours said about the press. He said they were a "nattering nabob of negativity." Kind of why I was interested in learning the difference between a good natter and a bad natter. lol

PennEd · Dec 29, 2015

Depleted said:

Back to depressed. I know he's still getting better. After all, he lasted through the night without a vent, but that was it. His heartbeat was rising, he wasn't breathing well, didn't have the energy to clear out his lungs, and he was losing ground, so they put him back on.

He didn't sleep well last night, for obvious reasons, so that could be the reason, but they also put him back on the sedatives, to calm him down. He was back to before Christmas. Kind of in and out of it, more out, than in.

If it's not too busy, (and remember most people really, really do not want to end up getting emergency surgery during the holiday week, so hopefully it won't be too busy, but stress from the holidays often cause things like this, so it could be busy), they will put him on a trach later on in the week. At least with a trach he can use his throat for liquids, and maybe some food. (And by food, I'm thinking broth or Jell-O, not food that sticks to your ribs. Either way, that won't be happening until next year anyway.)

I gave him two pep talks when he was semi-lucid. After he went through treatment, he wanted to see why our car stopped working. The car was a city-block away. (Eight city-blocks = 1 mile.) He was so exhausted just getting to the car, he was sweating. (In early May. It's not cold in May, but it's not hot either.) He sat in the car for 20 minutes to catch his second wind. But since then, he can walk that distance, and even walk all the way around our superstores, so he faltered, but did get better after that. This is like that.

And, I told him he has been steadily taking two steps forward and one step back. This is just the one step back. He really needs to have the will to fight this battle, and I didn't want to have him too discouraged.

BUT, sometime -- when he gets his brain back and thinks this out -- that one gigantic fact is going to slap him in the face too. It's one thing to recover from a massive heart attack. It's quite another thing to recover from one when you already have CFS, polyneuropathy so bad the front third of your feet are too numb to feel the ground when you walk, (you need three things to walk easily -- eyesight to judge distance and steps, constant micro adjustments in your back to maintain balance, and feeling in your whole foot to know what you're stepping on. Lose any of those three and walking gets 1-3rd harder for you than anyone else), AND he has something like palsy, where he has very little balance to begin with, (which also cuts back on his back having the ability to micro-manage the balance issue.) He already falls about four times a year. Without me there to keep tabs and catch him when he starts going -- and all I have to do is grab him, and he knows he's safe and can mental adjust to where up and down are again -- I have absolutely no idea how he's going to do learning to walk again.

I have absolutely no idea how he can ever recover with CFS. The nurses and doctors keep saying he seems to be effected harder with the pain meds and sedatives, even when they're stopped. No, not as bad as they think. He often looks like he's living without sleep for three days, even when he sleeps more than most. That IS CFS at it's finest. Fatigue! What he lives with even before the heart attack. Worse yet, anything new or that causes exertion, (like say a heart attack or simply removing a vent tube), is going to cause achiness throughout his body. When he takes a shower, he spends the night quietly moaning while watching TV. (He judges how bad it is by what feels like parked on his chest. It's not too bad, if it feels like a VW Bug parked on his chest. Very bad when he says, "Bus driver! Move that bus! No wonder a heart attack didn't feel too bad for him to think it was a heart attack.) A shower and then a trip grocery shopping means three nights like that. (The grocery shopping is worth-it pain for both of us. That's our excitement for the week. lol)

And this is the guy recovering from a massive heart attack. I know he will live. I fear he will hate that.

The Lord has sure blessed him with an incredible woman!

Dear sweet Lord, please strengthen and refresh this couple. In Jesus name I pray.

skylove7 · Dec 29, 2015

Amen PennEd!

pickles · Dec 30, 2015

Just read, all is in my prayers in Jesus for you both.

God bless
pickles

Depleted · Dec 30, 2015

Today he gets the trach. It's bigger than I thought. (90% of what I know about them I saw on TV shows, so it was always the difference between life and death on those shows, thus making it a cliche.) They've already made the phone calls for consent. (Two calls -- one about the trach itself and the other about the anesthesia.)

Sadly, they have to pull out his vent to put the anesthesia vent in for the operation. His throat is going to be so sore -- vents taken out and in five times in two days.

But earlier today, I asked God to let me know when it's safe to go grocery shopping. Sounds like a weird prayer, but with what's going on with John, knowing how many people have plans to get drunk tomorrow night and the next day, and I haven't had a chance to truly restock food in three weeks, I really need to go shopping today without missing any of these calls. (I don't do cell phones often, so even if I knew how to keep mine on, if I was driving, I wouldn't dare pick it up anyway.) Two phone calls by 8:30 AM for an operation happening at 1 PM. Sounds like God telling me, "It's safe. And, don't forget it's Seniors Discount Day plus the day before a big holiday party, so take the time you need."

Hurrah for onions again! (I only had half an onion left for Christmas dinner, so suddenly onions have become important. lol)

They're supposed to call me back after the operation. (Does that feel familiar to anyone else?) I'll be seeing him later than usual, so, please pray I get a parking spot not on a main street when I get home. Sounds like a silly request, but Mummers Parade (our big New Years celebration) equates to more drunks per square mile, and drunks crash into parked cars on main streets often that day.

Also pray, not only for the operation, but that John doesn't expect too much right after. He's going to be groggy, and I can see him trying to talk to me anyway. He got very frustrated that he still couldn't be understood. I'd rather him not have that hope again today.

Miri · Dec 30, 2015

Know what you mean about the shopping and other things which need doing,
especially trying to time it around work, the public holidays and hospital visits.
I found it a bit strange shopping for only one as well.

Praying for you both, not sure if it will be practical yet but would John be up to
using paper and maybe be a roller ball pen, something which is easy to
write with?

PennEd · Dec 30, 2015

Dear Lord, we continue to pray for Lynn and her husband. Please let them enter the New Year on a high note and good news. In Jesus name.

sandtigeress · Dec 30, 2015

praying for parking space is normal for me

God will provide !
He will provide all you need, and we/I are all praying for the two of you and your doctors and nurses.
God bless.

Pilkington · Dec 30, 2015

I am praying for you and your husband, it sounds like he has made amazing progress so far. I pray the tracheostomy operation goes to plan and that John continues to make good progress, help them both cope with the ups and downs that occur during this time. I also pray that Lynn would be able to get all the shopping done. Amen

Depleted · Dec 30, 2015

So, they gave John a tracheotomy around noon, and all worked out well. He was "there" when he was awake, although still groggy enough to fall asleep often. I asked the nurse when he could get ice chips. She said he already asked, but he can't have anything until they slow down the ventilator. (I like that he already asked.)

This time I knew he had enough ventilator changes in the last couple of days to tell him not to even try talking. He seemed fine with that. (I just checked in, and they have lowered the ventilator. Forgot to ask if that meant he could get something for his dry mouth. The nurse said he's doing fine, so I was too happy to think about that.)

So, he's doing better, so I'm doing better.

Pilkington · Dec 31, 2015

Praise God everything went well with the tracheotomy, it sounds like they are going to be able to gradually weene him off the ventilator.

Depleted · Dec 31, 2015

John and I have three kinds of days -- a step forward, a step backward, or a step sideways. Today was sideways.

He is more alert, to the point of actually understanding that our football team (The Philadelphia Eagles) fired the coach. (Good news, although it's going to take some time to make a good team again.) But he's not as awake as I keep thinking he is. I asked if he's allowed to drink again. The nurse came in right then, so I found out he can't until he's breathing on his own all the time. So, I promised John I'd bring him in his soda when he's ready, or coffee, and, by then, he can choose which kind of coffee. He smiled and dozed off.

When he woke up, he wanted that soda. Had to explain to him he can't have it yet. A minute or two later, he asked for the coffee. (I feel like an idiot.) Disappointed him twice. I told him I could get the nurse (who had left by then) to give him one of those spongy-lollipop things. He shook his head.

A minute later, the nurse came in and offered him one. That he wanted. lol

They can dip them in ice water, so he (the nurse) asked if he'd prefer that. Yeap! But by the time the nurse brought it in, he was sleeping again. (John's fingers look dehydrated with the beginning of cracking around the cuticles, so I was rubbing some Corn Husker's lotion one finger at a time, because he's got lines and puncture marks for hourly diabetes testing on just about every finger.)

He woke up again, so I asked him if he wanted me to give him the icy-water sponge thingy. Shook his head again. The nurse came in a minute later and asked him. YES! Ha! I figured out why. I would have just put it on his tongue but the nurse didn't miss a spot in his mouth. (I said, "You like him better right now, don't you?" lol)

So, it was time for his temperature reading. (Armpit, not mouth, so cold mouth wouldn't change the reading.) His temperature has actually made it to a little below normal yesterday, so I assumed that's what the reading would be this time. Nope, 101.2, but down from 101.8 thanks to Tylenol. Dagnabit! Thought fevers were over.

Still, his white blood count is 10.1, so it's not an infection. (Until three weeks ago, I thought fevers were always an indication of an infection.)

And sometime today, they'll take him off the vent for two hours. I told him his two jobs when off the vent is to cough when he had the strength and breathe, but not in that order. He thought I was telling him to cough. He coughs like he talks -- I can see it, but hear nothing.

So no big steps forward today, but no steps back either. Fever without infection isn't a step back. It's a step sideways.

(Must learn to talk in present tense with him only. No more planning and no joking that can be taken more than one way.)

Miri · Dec 31, 2015

Hi Lynn, bless you.

You are right it is one day at a time, I know with my aunt when I visit, I just
discuss things I have done that day or we chat about funny things
we have done in the past. Discussing the future even just to tomorrow,
is difficult as she gets muddle up with the timing of things.

Taking one day at a time is something which has been forced on me, but
which i am learning is a good thing.

You will be surprised later just how much John is remembering and will
be taking in.

Continuing to pray for you both, praying that the new year will be a time
of blessing and physical, emotional and spiritual healing for you both.
A time of reflection and growing in faith and your walk with the Lord.

x

Depleted · Jan 1, 2016

Correction -- yesterday was a step forward day. They had planned on giving him two hours of breathing on his own. I was worried, so I called last night to find out how it went. (The day without the vent was horrible.)

He did well enough that he breathed on his own for four hours! Typical John style. He went to computer tech training back in the late 90's. 4.0 is a perfect A. He graduated with a 4.2. He kept getting all the tests right, plus the bonus questions right. He's still getting the bonus questions right! lol

I, on the other hand, made a mistake last night. I have never liked New Year's Eve or New Year's Day, (except for our Mummer's parade.) It has always struck me that every day is the first day of the rest of our lives, so why make one particular day any more important? Like suddenly because the date changes everything will be good and easy? Pfffft.

But John likes it, so every year we watch an hour of hubbub, and then count down with the clock, and, at the very least, kiss at midnight. He's really a great kisser! He wasn't here, so I thought I'd celebrate it my way. I put on E.T. at 10:30 and planned to watch it all the way through. At 11:58, I felt guilty, so paused to watch the countdown.

Last night was the first time in 35 years I didn't get my kiss. I made it through Thanksgiving on a good note, and then Christmas! New Year's Eve? I don't even like New Years! The stuff we fall apart over. Yeesh!

BUT, having cried then, I am happy to say I didn't cry at the traditional spot I always cry at when watching E.T. (Ah, come on! Who doesn't cry when E.T. dies? lol)

Depleted · Jan 1, 2016

Boy, I'm exhausted, and I didn't even have to do any of the work! Just seeing John go through all he went through today -- it was like he took on a full-time, heavy-labor job again.

When I got there, I was really excited knowing he breathed four hours by himself, and told him so. He gave me this silly grin and then shifted his eyes to the ventilator. It wasn't on! He was already breathing on his own again. (So that's what a "trach collar" looks like. Aptly named.) And he was breathing like he breathes. (He takes slow deep breathes much like most people do when they're asleep, but he does that even when awake. The ventilator always made it feel like he was just shy of a pant comparatively.)

He was trying to say something. (He can't talk with the trach. I was thinking he'd just be too weak to talk at first, but he simply can't talk.) As usual, I still couldn't get what he said, except the letter B was involved. So I tried to do the alphabet chart. He was lying too far back to see it. So, I asked if he wanted to sit up more. Nod.

When I asked the nurse, he (nurse) said they were going to put him in the chair for a while. A really big deal! He's been lying down for six weeks as of tomorrow. I'm rattling on about John's neuropathy making it hard for him to walk, before I find out they're lifting him (with a pulley system built in for just such reasons.) Big production, but he's finally in a chair.

At first he was as thrilled as I was, but that quickly turned into pain mixed in with some frantic. He's back to mouthing that B word I couldn't get before. Before I knew him, he fell 20 feet into wooden boxes and dislocated his shoulder, ripped muscles between ribs, and hurt his knee. Any one of those things can pop instantly at any moment, so I asked him if it was any of those. No.

It took me a good five to ten very long minutes, before I remembered -- he also broke his back in 1982, and it can spasm at any time. B! Back! Geesh!

That was it. When his back acts up, I've seen it knock him to the ground in pain.

He wants back in bed.

The nurse said, "We'd like to keep you sitting for an hour. It helps the breathing."

I can understand John's expressions. NO! BED! NOW!

I told the nurse, (and ended up crying while talking), "He had his heart attack on Tuesday and didn't go to the ER until Saturday. He can handle pain more than anyone I've ever known, but not this. Not now. Maybe later. Maybe tomorrow, but when his back is spasming, he cannot do it." Before I said that the nurse went out into the hall and conferred with others. I think the choice was tough it out. After I said that, they took five minutes to get John back in bed. (Lot's of wires and lines in him, so it's a lot of work to prepare everything to move with him.)

I read John's expression after he was in bed. It was like he was enjoying the perfect dinner. Pure ecstasy! The spasms stopped immediately.

The nurse said that John's bed could be put into the same position as the chair. After John relaxed for a while, they'd try that. John was against it. I am the Princess and the Pea, and I have a bad back. I have one recliner that fit my back perfectly, and it broke last spring. I tried two other chairs in the house. Neither worked. We considered buying a new chair, but I don't know if a chair works, until I try it out for a couple of days. So we opted to repair my recliner. (Recliner repaired, but something went wrong, and to this day I'm stuck in it in such a way that it causes as much pain as other chairs, but that's another story.) So, I told John maybe it's like my chair. The chair they used wasn't working for him, but maybe the bed would be different. He agreed to try.

I promised to stay to make sure I'd be there for him, if it didn't. (They would have left him in that chair with terrible back spasms, if I weren't there to explain the problem.) He was thirsty by then. (We finally found out why he can't drink anything. Until he can pass a swallowing test -- which he failed when off the vent and without a trach -- if they give him something to drink, it is likely to go down into his lungs. He's not happy at all with this, but better safe than sorry.) So was I. (I usually bring a soda with me, but now that he is awake and thirsty it felt mean. But I am always sipping soda, and had been there for 90 minutes, so I needed a soda and cig. lol)

The nurse brought him ice water and the spongy thingy while I went out for a soda and cig. (If nurse is swabbing his mouth, he's not putting John in the sit up position, so I felt safe.)

When I came back, John was put up in a sitting position. He liked it and it didn't hurt his back. (Probably a relief for his back, since he's been lying on it for six weeks.) He needed to be suctioned out a couple of times. (Very disturbing seeing a long instrument pushed down directly into his neck. I could also tell John didn't like it, but it beat trying to breathe with the goop in his lungs and windpipe. I'm not ever doing that to him, which is good, because he didn't want me to. lol)

He seemed upset about something. The nurse asked him what he wanted, and guessed "shower." John gave his emphatic Yes nod. He's not ready for a shower. Nurse said he could get a clothe and wash John's face. John agreed, but nurse said not until he took some blood. That's when John started fuming. Something was bothering him, but I couldn't figure out what, until after the fact.

The nurse left, and John did the universal sign language requiring the middle finger at nurse. John's pulling at his hospital gown. I ask the series of wrong questions before I guess the right one. "Are you hot?" (It's like 75 degrees in that room. We live at 65 degrees at home, and John keeps a fan on him even in the middle of winter, so he really likes it cooler.)

Bingo! So I lower his gown as much as possible. (Eeek! Not too low. I didn't know he was still hooked up for drainage tubes -- I suppose just in case, since the ports are there but no tubes. Still. Big wrapped covers on his chest with blood below. Kind of freaked me out, and I didn't want it to freak him out.) And then I aimed the little fan straight at his head. He smiled, but he was still annoyed.

Nurse returns with a little basin and two face cloths. He puts them on the chair and walks to the other side of the room. John stares at the clothes. He comes back and starts raising John's gown back on his shoulder, and I tell him John's hot. He asks John if he wants him to wash his face. Big nod! And then he asks if he'd like a wet cloth on his forehead. Really big nod!

Ohhh, that's what he wanted. That's why he was fuming. He was hot, and wanted to be cool quicker.

Once the facecloth was on his forehead, John was okay.

But, he also had a lot of mucus when the nurse left, but he didn't think it was bad enough for me to get the nurse.

Within 15 minutes, he was gasping, and the nurse got the Respiratory Therapist to check him out! New record! John made it 7.5 hours of breathing on his own. A third of the day. Exhausting, but good.

At one point, John asked me "Home?" I told him the truth. He's disappointed. Breaks my heart. But I told him when he gets to the point of breathing on his own, he gets out of the ICU.

I'm going to have to step up and stay longer. I know he's willing to put in the good effort. He was a heating mechanic for decades, so he knows hard work and embraces it. But they don't know that, so they naturally think they get my type of person all the time -- The Princess and the Pea. I need to be there to make sure they know when he has enough, he has already pushed himself.

Meanwhile, my back is so sore now, I'm writing this much to avoid every pulse of pain.

I don't know how we're going to pull this off together, unless God does his thing. So, despite this being seven pages long already, please keep praying. It's not as mentally hard, but it just got up to physically pushing past what I think either of us can do.

Miri · Jan 2, 2016

Aw Lynn,

It's hard isn't it.

My aunt was similar but while she was able to talk, she was very confused and
not making sense, so I spent hours at the hospital trying to figure out why
she was getting frustrated and what she wanted.

One day I went to the hospital to find the staff had raised the bed end so she could
sit up in bed but then she began to slide down the very smooth pressure mattress
she was laying on. So they had also raised the foot of the bed but way too high.
I found her in great distress sort of sandwiched in this hollow bit in the middle of the bed.

Anyway I quickly flattened out the bed at both ends and you could see the relief
on her face. I went to tell the staff they should not leave her like that. But a few
days later they did the same thing again with different staff. In the UK the
nursing staff and care assistants work 3 x 12 hour shifts then have 4 days off.

So I went to tell them again in a nice but firm way. After that I just started to
control the bed remote myself and if she got a bit uncomfortable in one
position I just altered it myself for her. This among other things meant spending
many hours at the hospital, although over the last few weeks I've been able
to scale that back.

The first time they get her out of bed in her chair, it was ok at first but after
a while she got too tired I suppose her muscles will have been weak due to
laying down for so long. So I had to also insist the staff move my Aunt back
into bed and do it more gradually. Although there were times when tough
love was needed, there will be with John at times, especially when the physios
get more involved.

Things will improve honest, it will just take a bit of time.

Keep your chin up (good old fashioned phrase means look up stand tall etc, not
be cast down).

Lord I thank you for keeping John safe and for bringing him through this. Give the
staff wisdom to understand John's needs and I pray for the healing to continue.
I pray also for strength and your peace to rest on Lynn.

Lynn take things one day at a time, try not to over think things and just take
it one step at a time. I know it's easy to say that, there might even be times you
will need to be firm with John if he gets a bit frustrated and there may be times
you will need to be his advocate and get firm with the staff speaking up for him.
Dont feel intimidated by the medical setting, after I while I got to the point where
i was as much a part of the medical team as any of the staff at the hospital but in
a different role. I quite happily chatted to the staff and had meetings with all
manner of people on behalf of my aunt.

After a while they started to treat me as an equal rather than a relative and that
helped with communications. It was a bit strange though when I had two meetings
with the mental health staff on behalf of my aunt. I hoped they didn't think I had
climbed out of my tree. Lol.

Ive got to know the staff so well that now they all come to say hello, tell me about
what they did at Christmas, tell me when they have not been well and share
experiences with their own elderly relatives. In short they are human too and
don't know it all and have their own problems.

Maybe that doesn't help you too much just now, but getting to know the staff
and working with them, getting them on side etc, will help so much with
getting John back on his feet again.

Keep that chin up.

Depleted · Jan 2, 2016

Miri said:

I think the staff at this hospital has the same scheduling practices. (And I think 12 hour days for ICU nurses is ridiculous. They're constantly running, doing, and working to the point they take 5 minutes to eat, and I'm not sure they sit even then.)

And, wait! You learned how to work the bed? I'm impressed. John's bed complains that the weight in the bed is wrong. It's a complete tattletale, but, of course it's wrong. He's losing 7 pounds a week! lol

I have been doing better with trying to learn the nurses' names. I don't usually try to remember anyone's name until I talk to them more than once, but thought it was important they know John and I are people, so I'm treating them like people.

When I'm dealing with something this big, it comes down to baking for me. (When my grandmother died, in the course of three weeks, I baked 40 loaves of sweet breads -- apple bread, banana bread, and the like. Many neighbors and co-workers benefited.) Before this hit, I was baking enough that John and I had homemade desserts every night. I'm still doing that, but now a quarter of what I make goes into the freezer for when John can eat it again, I eat a quarter, and the rest goes to the nurses.

I particularly think it's important for them to know how much I appreciate them working on a big holiday, so for all three holidays, I brought in something for them to eat. (He has only had the same nurse two days in a row twice, so I brought in a loaf of pumpkin-cranberry bread on New Year's Eve and then two more for New Year's Day. Got fooled. Same nurse. lol)

Due to how hard it was (and how many lies I was given) to figure out what my problem was when I first became disabled, I lost fear of doctors and nurses long ago. They're doing the same thing the rest of us are doing -- guessing -- except they have the education to guess better. Sometimes they even have the experience to guess better.

But, had I been there the first day they took John off the vent, I would have weighed in. They told me they'd swap the vent for a trach, but didn't. They just removed the vent. Had I been there, I would have made sure the trach was in first. I've seen the turn around rate. I'm 59, so this isn't the first person I know who had a heart attack. Most do not take 5 weeks to recover enough to have needed surgery. That surgery was held off only because he would have died during it, if they did it immediately. He needed it immediately, but they waited until he healed. The likelihood of him going from vent to breathing on his own for the rest of his life was never good. I'd kick that doctor, if I knew which one it was. (And I'd wait until we were sure John didn't need him again, before kicking him. lol)

I give they know more about medical stuff than I do, but I know John better than they do. I'm not afraid to advocate for him. I am afraid I'll give in to him too easily. I don't think I will give in easily, but sometimes, I might give in. My biggest fear, (and, yes, one day at a time is easier said than done), is John will reject rehab just to get home quicker. I can't carry him!

In the last two days, he isn't getting when I have to go, I really have already pushed myself far to stay as long as I do. At home, he knows what I can and can't do. Now he's seeing me as his only anchor to home, and me leaving is tough on him. That nurse not getting he's a fighter, so will do what needs to be done until he can't, just changed all this. It's imperative I stay and yet sometimes required that I go.

Pilkington · Jan 2, 2016

Praise God, that John is making such good progress. Don't know this will help or not, if he needs a tracheostomy long term it is possible to have a speaking valve inserted. Currently all the air goes in and out of the tracheostomy and so does not go pass the vocal cords which vibrate thus allowing speech. If a speaking valve is inserted it is pressed and it stops the air coming out so the air is forced over the vocal chords. Having a tracheostomy allows gradual weening off a ventilator rather than all or nothing and the trauma of ventilator tubes being in the throat causing damage to the tissues. I am hoping and praying that your husband will be able to fully and completely come off the ventilator. Also great care has to be taken as the cough reflex will be week so all the gunk will have to be suctioned off to prevent aspiration. If he no longer needs a ventilator then in all probability they will allow the tracheostomy to heal natural or repair it. As you are probably aware the ventilator breathes for you forcing air in and out of you. The next level down is non-invansive supported ventilation, things such as BiPAP. (bi level positive airway pressure). Some of these machines can if you are capable of breathing make you take a breathe as they increase the external pressure, this pressure than drops and you breathe out, can be used just night, night and some of the day or day and night can also be attached to oxygen. My husband was on a BiPAP for around 18 monthes at night, due to respiratory issues where he would stop breathing at night, caused by Beckers Muscular Dystrophy which has affected both his respiratory muscles and caused Heart Failure. He now has been off the BiPAP for over year and will be shortly off for a sleep study. There are also CPAP which is continuous positive airway pressure devices.

Hopefully the swallow reflex will improve. There are different levels of swallow reflex issues or dysphagia. Sometimes fluids are thickened to reduce the risk of aspiration. Also it may affect the consistency of foods your husband can have whether it has to be pureed etc. In the short term nasogastric tubes can be used, tube through nose to stomache or longer term PEG feeding. In the UK speech therapists normally deal with the swallow reflex. I suspect that the swallow reflex has been affected by being on the ventilator for so long and it will take time for the tissues to return to normal and it will improve.

I am continuing to pray that your husband continues to make good progress, he is weened fully off the ventilator and his swallow reflex improves. I also pray that Lynn would be able to juggle everything and that you would give her the strength to spend the times she needs to at the hospital. Amen

NEED PRAYER NOW

Miri

Guest

Depleted

Guest

Depleted

Guest

PennEd

Senior Member

skylove7

Guest

pickles

Senior Member

Depleted

Guest

Miri

Guest

PennEd

Senior Member

sandtigeress

Senior Member

Pilkington

Senior Member

Depleted

Guest

Pilkington

Senior Member

Depleted

Guest

Miri

Guest

Depleted

Guest

Depleted

Guest

Miri

Guest

Depleted

Guest

Pilkington

Senior Member