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Depleted

Guest
Something happened to John last night that scares me. He was trying to sleep last night, but kept waking up because of the onslaught of roaches and mice all around his room. There were no roaches or mice in his room. He had to work that out in his head. He had to remember he has never seen a roach or a mouse there. And then he went back to sleep to be woken again by the same thing. When he woke up, he saw them, but then had to work out he wasn't seeing them. He was delirious again, but this time he has had enough reality in the last couple of months to realize his mind was slipping.

When he was in the hospital for those two nights, the nurses usually came into his room to administer his antibiotics. He came in during the afternoon, but the hospital didn't contact the nutritionist's office until after 5, when the nutritionist left for the day. So they simply skipped giving him two of his feedings. To go along with that, they also decided he could have no ice or water either. And then at midnight he had to fast for the endoscopy the next day too, so there was no reason to feed him. His procedure happened at 3 PM, so they decided he shouldn't have any feedings all that day and no ice or water either, because right after being knocked out for the procedure the food or water might cause vomiting. 1.5 days with no feedings or liquids. And then on the last day, they started the day telling him I was denying him his feedbag until I saw his doctor. (That was a lie.) His doctor finally approved feeding him again at 2 PM that day.

That was 50 hours with the only contact being people coming in and out of his room to give him medications and to tell him what would happen next, including no food or water.

Add to that, he was left on a tube to eliminate waste for so long, he can't tell when he has to poop anymore, or if he has gone on his bed. (The hospital refuses to give him adult diapers, and also refuses to get there in time to help him with a bedpan, so he also simply gives up trying to catch it.

Isn't that somewhere between solitary confinement and against the Geneva convention? The first thing the nurses complained about when he returned was they returned him without ever cleaning him up after going in his sheets. (Thankfully, he's been constipated for a week, but he told no one that for fear they'd fix it.)

They call these hospital-induced delirium. In this case, their ineptness caused him to go back to that phase briefly.

One of the first things he told me this morning was his nurse caught that he had a nose bleed again. "Caught." What he didn't catch was John is vomitting again. To John, going back to that hospital is very much like getting put in solitary confinement and he did nothing wrong to deserve the sentence.

This is what is different now, and it's not a good thing. Rehab can't fix what's wrong with him. The hospital punishes him for coming back.

I've gone over everyone's head today and emailed the Director of Veterans Affairs to ask for a reprieve on John's sentence for not eating. I didn't tell all that's going wrong, because if anyone asks John, he will feel like he's being punished for not speaking up. He likes his nurses in the rehab, and also doesn't want to get them in trouble. My purpose is to get him back to eating after 134 days of not eating, so, if he is sent to the hospital again, at least I can feed him when they don't think it's all that important that he eats at all.

He won't even let me put water in his ice when nurses are around because some nurses think he's not allowed to have water. I keep telling everyone he's been allowed to have ice and water since January 15th. (The post was on his door for weeks when he was in the hospital but out of the ICU, so I pointed to it often at nurses there.) The nurses at the rehab know he drinks water. What else is he drinking if he waits for the ice to melt? They also see me walking down the hall with a cup of ice water, but he thinks they don't know.

Pray he has no more bouts of delirium, no more need to go back to that hellhole, and that the director does something good with my email.
 
M

Miri

Guest
Sorry for all this Lynn. Why can't they just come up with a routine and
stick to it - it sounds like Chinese water torture but without the water.

Delerium is usually a sign of something medically wrong so make sure they
don't fob you off. Could be water infection, could be low blood sugar levels etc.
Could be a reaction to a drug or his blood chemistry out of sync.


Will keep praying
 
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Depleted

Guest
He slept long and well last night. He also hasn't had a bloody nose since yesterday morning, so I'm feeling a little more hopeful. I'm also still wincing for the next shoe to drop.
 
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AuntieAnt

Guest
The medical industry and I do not get along well at all. On most occasions I have had to give "thunderous admonitions" to medical folk who mistakenly thought they were God. They are paid waaay too much money to act negligent or annoyed. Nope. Their patients deserve top priority and utmost respect and care. Don't tolerate anything less.

It literally infuriates me when I hear or see doctors, nurses, interns, even medical receptionists, not giving their all to patients who trust them with their lives. I honestly cannot keep from vehemently scolding anyone in the medical profession who gives less than what they are paid to do.

I know I would wind up screaming my head off at those quacks who are mistreating your poor dear husband. I have zero tolerance for abuse of any kind. True story.
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Btw, I have a pet peeve. It's anyone in the medical field who doesn't treat their patients the way they themselves would want to be treated. :mad:
 
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AuntieAnt

Guest
Father God, please continue to watch over Lynn's dear husband and minister to his heart and mind. Please put in on the hearts of the doctors & nurses to treat him with dignity and utmost care. May he soon be well, Lord Jesus in Your glorious name we ask. Also bless and comfort Lynn and may she be strengthened by Your perfect peace. Amen!!

 

Pilkington

Senior Member
Jan 13, 2015
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I am praying that you get some joy from your email and that John is back at the Rehab soon. I am praying he will be allowed to eat again.

Even if you were able to feed him, they would probably have had a Nil by mouth if they thought they needed to do a procedure and so you wouldn't be allowed to feed him. Not allowing patients to eat seems a common problem. When my husband was in hospital having a heart transplant assessment, he was not allowed to eat as they were going to do a right atrial catheterisation he ended up starved for two days. In the mean time he had an exercise test whilst starved and really struggled. He ended up having another heart transplant assessment at a different hospital as the first hospital turned him down but supported a second opinion. At that hospital they don't even starve you for the right atrial catheterisation.

Adult Diapers would probably make the bed sore worse, so there is probably some logic in the hospital refusing, they just would never get round to changing him.

I think in reality hospital are horrendous places to be.

My heart goes out to you and John
 
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Depleted

Guest
The medical industry and I do not get along well at all. On most occasions I have had to give "thunderous admonitions" to medical folk who mistakenly thought they were God. They are paid waaay too much money to act negligent or annoyed. Nope. Their patients deserve top priority and utmost respect and care. Don't tolerate anything less.

It literally infuriates me when I hear or see doctors, nurses, interns, even medical receptionists, not giving their all to patients who trust them with their lives. I honestly cannot keep from vehemently scolding anyone in the medical profession who gives less than what they are paid to do.

I know I would wind up screaming my head off at those quacks who are mistreating your poor dear husband. I have zero tolerance for abuse of any kind. True story.
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Btw, I have a pet peeve. It's anyone in the medical field who doesn't treat their patients the way they themselves would want to be treated. :mad:
Tried that, more than once, in the last four months. All it got me was a lot of words that meant nothing so wasted my time. (You know me. I'm not shy. I now openly call that hospital the hellhole to the very people making it a hellhole. I even tell doctors who tell me they don't lie that I've heard that from all the doctors that do lie. Last time I did that -- two days ago -- sure enough, one day after telling him that, I found out he lied.)

I've got but so many hours in a day, so I'm trying to pick appropriate battles rather than try to fighting every battle. BUT, if I have time, I will work to get one nurse fired by making calls on Monday. Not for John's good, but for all the other patients stuck with her.
 
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Depleted

Guest
I am praying that you get some joy from your email and that John is back at the Rehab soon. I am praying he will be allowed to eat again.

Even if you were able to feed him, they would probably have had a Nil by mouth if they thought they needed to do a procedure and so you wouldn't be allowed to feed him. Not allowing patients to eat seems a common problem. When my husband was in hospital having a heart transplant assessment, he was not allowed to eat as they were going to do a right atrial catheterisation he ended up starved for two days. In the mean time he had an exercise test whilst starved and really struggled. He ended up having another heart transplant assessment at a different hospital as the first hospital turned him down but supported a second opinion. At that hospital they don't even starve you for the right atrial catheterisation.

Adult Diapers would probably make the bed sore worse, so there is probably some logic in the hospital refusing, they just would never get round to changing him.

I think in reality hospital are horrendous places to be.

My heart goes out to you and John
He's back at rehab as of yesterday.

As for diaper v. no diaper? The poop is going to head to the bedsore either way. At least he doesn't roll around in it with diaper on.

I would know why they didn't feed him most the day after surgery, if I could actually talk to a doctor and find out -- or a doctor would talk to him. Best way to get ahold of his old doctor? When she comes to tell him she's transferring him out of the hospital again. The decision was already made, so nothing else to say to her.
 

Pilkington

Senior Member
Jan 13, 2015
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I am really glad John is back in rehab.

I really wish and am praying the staff would be honest with you and John, even if it meant them acknowledging that they don't know. I am also praying that communication would improve.

God Bless
 
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Depleted

Guest
John gets a blood test once a week -- either a Monday or a Tuesday. This has been happening since he first went to rehab on March 4th. And every single time he got that test, he had to go to that hospital. Once it was just to get an IV of iron. (And he still has to go back every Friday for the next four weeks to get more.) All the other times he had to go back because his blood count was too low.

That's the other shoe I expected to drop today.

It didn't. His blood is 850 -- perfectly fine number. Downright pretty number.

And his doctor said today ought to be the last day he has to get antibiotics.

For one reason or another, he hasn't had PT since a week ago Monday. One of those reasons is because he can't have PT when getting his antibiotic drip, so that's one less reason.

Everyone of those delays sets him back. This might be the moment when the delays aren't constant.
 

pickles

Senior Member
Apr 20, 2009
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John gets a blood test once a week -- either a Monday or a Tuesday. This has been happening since he first went to rehab on March 4th. And every single time he got that test, he had to go to that hospital. Once it was just to get an IV of iron. (And he still has to go back every Friday for the next four weeks to get more.) All the other times he had to go back because his blood count was too low.

That's the other shoe I expected to drop today.

It didn't. His blood is 850 -- perfectly fine number. Downright pretty number.

And his doctor said today ought to be the last day he has to get antibiotics.

For one reason or another, he hasn't had PT since a week ago Monday. One of those reasons is because he can't have PT when getting his antibiotic drip, so that's one less reason.

Everyone of those delays sets him back. This might be the moment when the delays aren't constant.
Hugs, continuing to pray in Jesus.

God bless
pickles
 
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Miri

Guest
Hi Lynn,

Was wondering how things are going. :)
 
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Depleted

Guest
John stood on one foot and then sat down purposely.

Now let me help you take in this incredibly 10-step-forward moment. There is only one other thing that has to happen before John can take that swallow test. He has to be able to pivot. The medical word doesn't mean what the normal word means. In rehab talk, "pivot" means a resident has to be able to help an attendant get him from the bed to a chair, or a chair to a chair, by using his own two feet to lift his body, shift over one or two steps, and then purposely sit. (As in lower himself, instead of plop down and hope he hits the spot.)

So, in order to shift one to two steps over, he has to be able to stand on one foot. (Stand on it, not balance on one foot. It's fine if he holds something while he's just up on one foot, and he does hold a parallel bar to stand on one foot, but he did the standing on one foot part.) He could only do it with his left foot. It's stronger than his right, but I get that. When he was first able to pull himself into rolling on his side, everyone wanted him to roll to his right side to get to his wound on his left cheek, so his left side developed quicker, even if he's right handed.

AND, he purposely lowered himself into his wheelchair by using the arms of the chair to get him down. (He's taken to watching TV to see how people walk.)

Soooo, John stood on one foot and balanced himself. T'ain't bad for a guy who hasn't purposely sat up, even in bed, since November 21st, eh?


And, this time I'm as braced as I can get. I do know 10-steps forward means there's going to be a step back somehow, some way. BUT he still stood and he still purposely sat again. (He's also standing by himself for a couple of minutes at a time. Not until he's too tired, but until someone tells him it's time to sit to do another exercise.)
 
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Miri

Guest
It sounds like things are going in the right direction at last.
You seem more positive. Praise God.
 

happyface

Senior Member
Jan 19, 2009
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Hi Lynn, lots of people are praying for John and yourself of course, hopefully the prayers keep you mind going in the right direction. Glad things are settling for you. X
 

Dutch

Room Moderator
Staff member
Feb 28, 2010
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We Believe You Father , We have Faith in You Lord . Lord we hold up Lynn's '' Atwhatcost'' Husband to you Father as he has suffered a heart attack Lord. Father God we ask for healing and restoration Lord in this situation, Touch this man with Your healing Touch Father. We Thank You For Your Mercy and Grace Father in this matter Lord.

In Jesus' Name

Amen
 
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Depleted

Guest
He walked! Three times!

[video=youtube;dKF8IzBmp74]https://www.youtube.com/watch?v=dKF8IzBmp74[/video]

(My new nickname for him. lol)
 
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Miri

Guest
Wow just think I bet Peter was just as excited when he walked on water. ;)

Praise God.
x

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Depleted

Guest
John in his wheelchair, (and for the first time I saw him without that face he used to make that said, "I'm being put in the torture device without any way of protesting"), rolled out with me into the middle courtyard to enjoy sun (without being rushed into an ambulance to go back into the ER or to get some more iron in an IV) to see the daffodils are just starting to fade, the lilac bushes are smaller than the one we have at home, huge red poppies, when did tulips start coming in purple or white(?), a couple of flowering bushes, and a tree that looks dead except for tiny leaves peaking out at its branches.

We found swings for couples that include one side for a wheelchair that we'll never use, some umbrellas over tables that we might use when it gets hot out, and a huge grill that may or may not be available for him to make a cookout for the two of us. (I am willing to bring enough food for anyone who has to be there to make sure he doesn't hurt himself and any of the friends he makes before this happens, if it does happen.)

I got to show him where Smitty showed me a hawk on top of the Children's Hospital across the parking lot, the bathroom I consider "my bathroom" for no other reason then it's the one empty most of the time, and the perch in the aquarium in the lobby that look just about the right size to eat. And, he finally got to see those tiny blue flowers that are really weeds, but are so pretty I wonder how anyone could ever want to mow them down, right near our car in the parking lot. (He was happy just to see his car. lol)

AND, he met Smitty, the guy who showed me where the hawk lives, and who used to be 6' 6" until he lost both legs to diabetes, but he can still palm a basketball. And John saw where the two computers were for when he finally feels like going back onto the Internet...

But today? Today he just enjoyed the sun on his face for more than the seventeen seconds it takes the EMT crew to whisk him back into the building. Today he smelled flowers so faint in their perfume that I, a smoker, couldn't smell. And we got to laugh that their garden has the same weeds ours does -- the ones that look like they're going to turn into dandelions, but become balls of seeds before any petals ever show up.

For the first time in five months, we got to enjoy a day out together!

And, I walked down the halls by myself afterward, once again determined not to burst out crying, but discovered there is an entirely different visual feeling in my gut when that cry I'm NOT doing is joy, instead of overwhelming dread! I like it!

Great birthday present! Just like the old days.
 
Feb 28, 2016
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old days are our history,,,Jesus' gift of another day with all of the trimmings are His special gift,
and the power of His Love...