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Off Topic :
Need all the mojo and prayers i can get please

Topic is Sleeping.
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sisoon ( Moderator #31240) posted at 7:24 PM on Thursday, July 4th, 2024

Off the vent is great to read, Dragn. Thanks for keeping us updated.

It's entirely possible that seeing your kids will be a great boost for your father and for them, too.

Just wait, Dragn. You gotta be a grandparent to understand how most of us view grandkids. smile

fBH (me) - on d-day: 66, Married 43, together 45, same sex ap
DDay - 12/22/2010
Recover'd and R'ed
You don't have to like your boundaries. You just have to set and enforce them.

posts: 30475   ·   registered: Feb. 18th, 2011   ·   location: Illinois
id 8841503
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 DragnHeart (original poster member #32122) posted at 11:24 PM on Thursday, July 4th, 2024

Well things are just moving at light speed.

Spoke to mom and brother. Dad will be going for ankle surgery tomorrow evening. They suggested going to visit him tomorrow morning. All of us (minus brother who is working. He will go Saturday) I spoke to all of the kids and they all wanted to see grandpa, even dd. So that's the plan. I agree that it will boost dad. I just didnt expect it to happen so fast.

Ds is better. So a quick visit is fine. They won't let us all in together so I have to take one kid at a time. We will stay until mom gets there so he has someone with him.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
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WhatsRight ( member #35417) posted at 12:51 AM on Friday, July 5th, 2024

Wow, this is really great news. It sounds like they were all making their own decisions not to see him until his turn for the better. So that’s nice that they’ll get to see him and that it won’t be upsetting to them.

What a roller coaster you are on. Lots of prayers that your dad gets through his surgery with flying colors!

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

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 DragnHeart (original poster member #32122) posted at 1:17 AM on Saturday, July 6th, 2024

We spent ALL day at the hospital. Left the house at 7am. Got home at 7pm. Mom got there shortly after us and brother came after work.

So BIG news

Dad is OUT of the ICU. When I got there he was in a new icu room at the front. He has an NG tube due to swallowing difficulty. He can barely speak. He's also awake then asleep then awake.

Spoke to surgeon after an x ray. Bones are aligned and surgery could set him back so he wanted to just put a full cast on it, wait 5 weeks then x ray again. The cast is orange.

He went from being so dehydrated that his kidneys began to fail to now having so much fluid in him that he's swollen. They gave him meds for that while I was there. His urine output is great,he's having bowel movements, his heart rate and blood pressure are perfect without any medication.

I won't lie though, if one more doctor asks how old my dad is i'll flip out. His age isn't a factor here. What he can physically tolerate, what his body can handle, what quality of life he has going forward IS what matters.

I made it clear, our goal is for dad to come home. Whether he continues to get better or ends up on hospice, home is where HE wanted to be. And once I said I was a personal support worker the docs attitude sorta changed. He said they will do everything to keep him going forward but if he deteriorates despite every effort then we all agree, not to pursue further treatment. IE if his heart stops, it stops.

He was moved to the medical floor with his own room after the kids and I left. So the next time we go down we won't have to take turns seeing him.

They found that part annoying.

I would like to ask for anyone's input.

After being on a ventilator, is it normal to have swallowing and speaking difficulties?

Is it normal for an older person to take longer to come off of the sedatives? He slept most of the time we were there.

Mom and I will be going down together this coming week while M and the kids are camping.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
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number4 ( member #62204) posted at 4:16 AM on Saturday, July 6th, 2024

Just catching up on this thread. Glad to hear he won't have to have surgery, at least for the time being. It will allow him to regains some of his strength if he needs it in a few weeks.

ICU fatigue is a real thing. He was probably immobilized for the entire time he was there. It will take some time and therapy to get him moving again. And as much as they try to be quiet during the night hours so patients can sleep, many days of being in there doesn't do much for getting restorative sleep. And yes, the amount of sedation they used will probably leave him groggy for a few days. He's only been out of the ICU less than a day - it will take time. His poor body is recovering from quite an ordeal. He needs sleep - hopefully he will get some quality sleep in his new room (hopefully he doesn't have a roommate!!).

I'm sure there will be a speech-language pathologists will be by to assess how to best reintroduce liquids and solids. In the meantime, he needs nourishment, so the NG tube will be there until he can get more calories himself.

I would bet by Monday you will see some big improvements. But it will take time for a recovery appropriate for him, given his other medical issues. He was really sick for a long time. I really hope they don't try to move him back to the other hospital!

With the kids gone this next week, I hope you can get some sleep, or at least down time between commuting back and forth to the hospital.

Me: BWHim: WHMarried - 30+ yearsTwo adult daughters1st affair: 2005-20072nd-4th affairs: 2016-2017Many assessments/polygraph: no sex addictionStatus: R

posts: 1373   ·   registered: Jan. 10th, 2018   ·   location: New England
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 DragnHeart (original poster member #32122) posted at 4:36 AM on Saturday, July 6th, 2024

ICU fatigue is a real thing.

Thank you so much for this ans everything else you said. I feel terribly guilty for not going down earlier to see him but I had appointments as did the kids and I havent slept more than a couple hours at a time in so long. Driving 2 hours is exhausting after driving the kids and I around. Mom came down with a cold and didn't want to make dad sick. Brother works and is just as tired as I am. We knew dad was in good hands and with the calls back and forth mom was being kept up to date.

Still I can't help feeling shitty that he went most of the week without us there.

Apparently dad's in a quad room. Hopefully the other patients are quiet.

Oh I made it very clear he will not be going back to the first hospital. They don't have an explanation for the bowel obstruction or if it was just from irritation and swelling. What I KNOW is that he was dehydrated when he got to this hospital. How did the staff at the first hospital not notice that? He was bedridden. Were they not providing a urinal for him or taking notes of lack of bowel movements? Just grrr

And here's where again I'm riddled with guilt. Had I gone to visit him in the first hospital I would have raised hell,maybe even prevented all of this from happening.

My IC said it wasn't my fault. Just wish I could feel that way.

With the kids gone this next week, I hope you can get some sleep, or at least down time between commuting back and forth to the hospital.

That's exactly what the kids IC said. Mom needs self care and with the kids gone I don't have an excuse not to. I will do my best. I will catch up on rest as much as I can but I do have a lot to accomplish while the kids aren't here.

I did get the power of attorney forms for care for both of my parents. Don't really need it for dad since we all agree already but I talked to mom today about needing her to put everything in legal writing so there's no confusion about what she wants. What she wants and what my brother thinks is best aren't the same. So there's that. Like I need a battle on that front with everything else going on. Ugh.

One thing I learned today is that they do casts different from when I was a kid. It's a wrap that hardens. Not really the plaster that you can draw/write on. The kids were looking forward to drawing on his cast.

[This message edited by DragnHeart at 4:39 AM, Saturday, July 6th]

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
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tushnurse ( member #21101) posted at 2:27 AM on Sunday, July 7th, 2024

To answer some questions: yes it's normal for him to be extremely tired and sleep a lot. The sedation medicine they use now is not nearly as hard on a person as it was ba k when I was a young nurse 30+ years ago. Plus true REM sleep is not achievable with the sedation. They are 2 separate things and even though he wasn't "awake" whole on the vent he wasn't sleeping either. So he has some catching up to do. Just be thrilled he isn't out of his mind with ICU psychosis.
That said he will take a few days to weeks to bounce back mentally. Physically we have a saying for those over 70. Every day spent in hospital takes a week to recover from. This is very true. He will need a lot of rehab and PT. And yes it is totally expected for him to have issues swallowing and speaking from being intubated. Hopefully they have a few good ST onnstaff to help give exercises and tricks for him so he can start eating and drinking again without risk of aspiration.
Again every day is equal to a week to recover. I'm sorry but that's just the nature of this beast. It takes no time whatsoever to decondition and time and therapy to recover. If he isn't able to eat and drink when they are ready to discharge they may discuss a feeding tube. These are put in through an endoscopic procedure and are quick and easy. But I do not know the laws in Canada and would not want him to have one if they prohibit you from allowing him to pass should it come to that.
It's a delicate and difficult time for you your mom and siblings for sure. Be kind to each other and try your best to keep in mind his wishes.

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

posts: 20302   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
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 DragnHeart (original poster member #32122) posted at 2:46 AM on Sunday, July 7th, 2024

Thank you Tush.

If he isn't able to eat and drink when they are ready to discharge they may discuss a feeding tube. These are put in through an endoscopic procedure and are quick and easy. But I do not know the laws in Canada and would not want him to have one if they prohibit you from allowing him to pass should it come to that.

Be kind to each other and try your best to keep in mind his wishes.

Mom said she was told he wouldn't be sent hone with a feeding tube. How true that is and if she actually understood the doc correctly is yet to be seen. I'll habe yo speak to the doctor overseeing his care. It's a different doctor every time I go in.

I asked mom if dad ever said what he wanted. She said oh he wants to be buried. Like not what I meant mom. They both never thought about vents and feeding tubes etc.

So we really have no idea what he wants. I want him to be comfortable and have more quality of life over quantity.

And I fully expect he will be in hospital for a while yet. I mean a week ago he was knocking on deaths door.


Just be thrilled he isn't out of his mind with ICU psychosis.

I don't think I want to know. Sounds scary.

I'm glad he's just resting. Mom went today. He's coughing up alot of phlegm and his chin is to his neck due to lack of use. So he will need alot of therapy.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
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 DragnHeart (original poster member #32122) posted at 3:19 AM on Sunday, July 7th, 2024

And dad is back in the ICU on oxygen (mask).

Apparently to much phlegm and not able to cough it all up. M said the doctor was studdering so bad it was hard to understand him. Mom took it all as dad is dying. M said it sounded serious but not as dire.

I just called the ICU. He's on an oxygen mask, blood pressure a bit low so he's getting fluid and he's being suctioned of the phlegm. He is stable.

Once M picks up the kids tomorrow I'm going to pick mom up and head to the hospital. Ugh.

Roller coaster hell.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
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 DragnHeart (original poster member #32122) posted at 7:14 PM on Sunday, July 7th, 2024

M and the kids have made it to their camping ground.

Mom and I are at the ICU with dad.

I was fully expecting to walk in and find him intubated again and close to death because that's how the doctor made it sound last night, even saying they were considering a tracheostomy.

Well dad was wide awake, only has a nasal candula for oxygen, perfect heart rate and BP, good urine and bowel output. He even talked to us. He's whispering but he's answering questions.

Now he's sleeping.

I'm just unsure what to think.

When I got to mom's place to pick her up she was crying and said she didnt want him to live in pain and was fully prepared for him to be dead or close to it when er got here.

Dad says he's not in pain. He was just cold so we pulled up his other blanket and he said he was comfortable.

I think this roller coaster of ups and down is taking its toll on all of us.

I'm keeping M up to date and the plan is if dad goes down hill where it's close to the end, M and the kids will come back. Otherwise they are to enjoy themselves.

So far it's looking up again.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

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MIgander ( member #71285) posted at 1:41 PM on Monday, July 8th, 2024

Saying prayers for your dad, family and yourself Dragn. You've been so strong through all of this! Please rest up when you can while the kids are out camping!

WW/BW Dday July 2019. BH/WH- multiple EA's. Denial ain't just a river in Egypt.

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 DragnHeart (original poster member #32122) posted at 1:04 AM on Tuesday, July 9th, 2024

Lol no rest for the wicked.

Picking up mom thrn heading to the hospital is exhausting for some reason.

Today she went to town before I got there to get a new handicap sticker since hers flew out the window. Service people wouldn't accept doctor forms because it's in my dad's name and they insist he sign it in front of them. Then on her way home her truck had issues and ended up in the shop.

So I get there, we go see dad then I make her an appointment with doc for this evening to have forms done in her name so she can go tomorrow and sign in front of government yahoo. My mom has osteoarthritis and bad knees so she uses a cane. When we get to the hospital and park at the back she needs two breaks. So ya she needs the handicap sticker.

Tomorrow I'll take her to pick up her vehicle, then I to town to get the sticker then head off to see dad.

He's ok thus far. Off all monitors. On a feeding tube and Nadal oxygen still but eating thickened juice. It's great. He was more tired today but before we left managed to speak really clearly.

Kids are having fun camping. Swimming, fishing, enjoying smores lol

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
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leafields ( Guide #63517) posted at 5:43 AM on Tuesday, July 9th, 2024

In spite of the circumstances, this sounds like a great update. I hope all is going well for you.

BW M 34years, Dday 1: March 2018, Dday 2: August 2019, D final 2/25/21

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tushnurse ( member #21101) posted at 11:03 PM on Tuesday, July 9th, 2024

This is not too surprising the fact that he needed to bounce back to the icu.
However his nutrition and needing thickened liquids is not unusual given he was on the vent for several days. It takes very little time to decondition and weeks to recover. As I told a patient today that is frustrated with his own recovery is this. There's a rule of recovery for every day in hospital it takes a week to recover from. And the crazy thing is this is very true. And is accelerated with a patient that with chronic issues.
So please keep this in mi d as he continues to bounce ce back. Also a patient with sepsis that your dad had it is not uncommon at all to become fluid overloaded. Which means they need diuretic therapy to get the extra fluid off. The extra fluid can impact everything from ability to walk to breathing.

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

posts: 20302   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
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 DragnHeart (original poster member #32122) posted at 12:13 AM on Wednesday, July 10th, 2024

Oh Tush this is so very hard to witness.

He went into the hospital with a broken ankle, able to eat and drink and dress himself before that and now he's bedridden, on an NG tube, fed with thickened fluids, and barely able to speak.

He no sooner seems to be in a deep sleep and they come to reposition him. He is awake and alert one minute and asleep the next or he just stares out into space.

He was in the "ready to leave the ICU" rooms and awaiting a bed on the medical floor. When we got there he was up in a chair.

Social worker came to discuss preliminary plans for discharge. She wanted to get a layout of the house, what medical supplies we will need, what supports etc. Dad was going to be transfered to a closer hospital but that one doesn't have the orthopedic specialist he will need in 5 weeks when they x ray his ankle to see how it's healing. So he isnt coming home any time soon which gives us time to figure it all out.

I'm still hoping with therapy he can speak again. His swallowing is ok. Not great but better.

It's just a mess. This whole thing. Mom isn't taking care of herself like I'd want her to. Not sleeping well. I've been making sure she eats and keeps up with fluids. I'm glad she has good neighbors that are willing to help when I'm not here.

At least the kids are enjoying themselves so far. That's a relief for me.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
id 8842050
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 DragnHeart (original poster member #32122) posted at 2:52 AM on Wednesday, July 10th, 2024

I have to commend the doctors and nurses, especially the nurses for how amazing they all have been.

I love how they talk to my dad and let him know what they need to do, even if he hates it. Oh man seeing him be suctioned is just awful! He doesn't have the strength to really fight it except to bite down on the tube and/or refuse to open his mouth lol. Stubborn. But at least he's able to breathe better once it's done.

It's also hard to watch him be repositioned and cleaned up.

They have Vaseline for his lips and lotion and told me it's ok if I put it on him. I asked him if it was OK and he just stared at me. It's frustrating when he won't even nod to answer. But his lips look better and not as dry which he was complaining about before.

I am do exhausted. One of the nurses told us that we can FaceTime with dad if we want in case we can't make it down there. Tomorrow and Thursday are supposed to be bad weather and I'm so tired I was sleeping in the chair in dad's room. So we will probably not go tomorrow and see how things are Thursday.

I spent the night at mom's and had the cameras up at home. Want to have fun with the animals? Just talk to them through the cameras. Lol. Of course the dog just looked up and barked. The cats decided to get eye to eye with the camera and meow as loud as they could lol.

I left out multiple food and water dishes which weren't empty when I got home tonight. Had the AC on and puppy pads out for the dog. Also had 2 people to come by the house to do a check. At least it's a relief that if I have to leave for a night things here will be taken care of.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
id 8842058
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 DragnHeart (original poster member #32122) posted at 12:40 PM on Friday, July 12th, 2024

Dad is out of the ICU again. Spent yesterday with him. He's on the same floor this time. He's having an MRI this morning. He slept most of the time but would wake now and then.

Mom and I are going for the morning then I'm heading home to meet up with the kids. Tomorrow I'm sleeping in.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
id 8842251
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MIgander ( member #71285) posted at 8:05 PM on Friday, July 12th, 2024

Hi Dragn, I hope you get that sleep you need so much tonight! Also glad to hear your dad is well enough to leave the ICU. I hope he keeps improving over the weekend!

WW/BW Dday July 2019. BH/WH- multiple EA's. Denial ain't just a river in Egypt.

posts: 1190   ·   registered: Aug. 15th, 2019   ·   location: Michigan
id 8842437
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 DragnHeart (original poster member #32122) posted at 3:13 AM on Saturday, July 13th, 2024

I have a few questions if anyone (Tush?) can answer.

What causes the small intestine to collapse into itself?

Mom took a call from the the doctor when dad was still in the ICU saying the bowel blockage was due to his small intestine closing in on itself. Is this possible? Would it be due to severe dehydration?

As of right now...the MRI shows a small something at the back of his brain. They aren't 100% sure it is a stroke. But. There is evidence of a previous stroke. Apparently a mini one. My grandmother had a stroke in front of all of us at the dinner table. Typical loss of function on one side. Slurred speech. Just the typical you always hear about. Dad has been slowly getting slower, suffling his feet, etc. Mom and brother can't recall when it started. It wasn't like he woke up one day and was just not himself. All of us assumed the cancer treatment had just taken its toll.

Anyways dad is having heart tests cause doc today said they worry his heart is "throwing small clots".

He won't stay awake very long and has significant weakness in both arms and legs. He is swallowing his saliva now and is on thickened fluids but isn't awake long enough to have them. It's all so frustrating seeing him deteriorate like this all from something that could have been avoided.

I'm exhausted. The kids are home. They had a great time. Hopefully I can sleep this weekend before another busy week of stuff starts.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
id 8842476
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 DragnHeart (original poster member #32122) posted at 3:41 AM on Saturday, July 13th, 2024

Hi Dragn, I hope you get that sleep you need so much tonight! Also glad to hear your dad is well enough to leave the ICU. I hope he keeps improving over the weekend!

Sorry I didn't see this and my SI email notifications are suddenly going to spam folder.

I sure am not getting any restful sleep. My eyes are puffy, I struggled just to drive home so I'd make it to meet the kids. I have had horrible nightmares where I'm 100% sure I'm awake. So even when I finally sleep it's just not good.

The kids are tired but ok. Really had fun. I'm so proud of how well they behaved and helped out.

Tonight I'm just going to crash and all of us are sleeping in.

Rother just got home from my place and found mom crying saying it's her fault for not recognizing that dad had a stroke. Geez none of us thought "stroke" and he had seen doctors. If they didn't pick up on it how would we?

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 25837   ·   registered: May. 10th, 2011   ·   location: Canada
id 8842478
Topic is Sleeping.
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