Poor DH On Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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  #5826  
Old 04-17-2017, 06:43 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Hi Iris. Glad to hear you are back home, but sorry to hear about John's oxygen problems. Continuing prayers for you both.
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  #5827  
Old 04-17-2017, 10:10 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Unhappy

I'm having major panic attacks & thought I'd turn to my AFC family for mega prayers.

In short John was having major breathing issues starting probably 4 nts before he left the hospital. On his bipap with 2 ltrs of 02 bled into his bipap, which is usual for him, he was de-sating into the 60's & 70's (63/64 & 78).

He's typically 93-95 with the 2 ltrs.

Even worse was that I had to discover he was so low; even though it was on a monitor that someone was supposed to be watching, they didn't alert anyone. But that's another story about this "wonderful" hospital.

His drs from the pulmonology group were there every day & I told them. They were supposed to text the dr who handles the sleep studies but apparently didn't. I'm furious with them cause they're his drs outside the hospital as well & are usually better.

So he left the hospital Tuesday with this problem.

I called every day since we were home. The dr finally called me back Friday about 5pm; the new settings for the bipap couldn't be called on because the company that does that were closed Friday for Good Friday & then again today for whatever reason.

So I got another number/office where they could do it today but the drs office didn't take care of it in time.

On FIVE LTRS of oxygen, John is only in the high 70's; can barely break 80.

Saturday nt I was screaming for him to breathe for a half hour; this was from before 2am till almost 2:30; till someone knocked on my door. I figured we were going to get thrown out; but the person asked if we were okay & offered to help. We have new people moving in all the time so I'm assuming it was my upstairs new neighbor. I thanked him and apologized for my shouting (" John, BREATHE!!!!!")

A minute later when I was still screaming, he knocked again & asked if he could come in and help. He also asked if John was responsive; so for a minute I thought he was a cop or something; but I think he would've identified himself if he was.

I looked through the perp hole & he looked like he was wearing shorts and a tee shirt.

I thanked him but there wouldn't have been anything he could have done.

Anyway, I am panicking big time.

He's de-sating during the day as well.

Something is going on.

John also had C02 retention; he had this in the hospital as well; so with all the oxygen, plus the fact he's not getting any real sleep during the nt, he can't stay awake during the day. This is also affecting his physical therapy, which he desperately needs.

They've been adjusting the bipap settings for literally over a year now & couldn't get them right. A week or so before he wound up in the hospital, I thought they finally got it right; it was a noticeable improvement. But that only lasted less than 2 weeks.

I'm scared out of my mind. I'm so scared what happens from 3:30am to 6 am when we get up. I know it's not good.

I'm worried sick. I swear I'm going to have a stroke. No exaggeration.

I can't stay up 24 hrs anymore. I'm dead.

Anyway, mega prayers, please. AFCers prayers always helps my DH.

Thanks always.
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Old 04-18-2017, 08:29 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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You guys are definitely in our prayers. A friend and I are doing a novena for everyone we know with breathing problems.

I know first hand how crappy your DH feels with those sats. Plus it's doing possibly permanent damage along the way.

Those hospital monitors are a joke. I once unplugged everything and left the hospital. I was home 45 mins before they called looking for me!
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Old 04-18-2017, 01:31 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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We're so sorry about all these issues. I don't understand the breathing problems. Just try and stay strong. We are praying for you and John.

Giant Hugs from the West Coast.
Luv,
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Old 04-18-2017, 04:41 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Prayed this AM for John's breathing to be restored.
The adrenaline from the fear for your DH must be fueling you, prayed you both will be able to sleep tonight with a new day of recovery in the AM.
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Old 04-29-2017, 12:13 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Sorry I haven't posted but more craziness going on all the time.

Between inept drs (plural); the home health agency; a new nurse they have that's horrible; just aggravation on a daily basis.

John is unfortunately doing worse. At 5 ltrs of oxygen, he is only satting in the 60's & 70's at nt with the stupid bipap.

Part of the problem is the bipap & the settings; and the way the bipap works on general; another huge factor is he is a mouth breather.

I got a chin strap from the DME company he uses but it's a cheap piece of junk; so I have to look fir a better one with more support.

But the problem with chin strap is that with it on, his full face mask isn't flush against his face; it causes major leaks; so I don't see any chin strap working. I've looked at everything on the internet and all the problems they described are what John's going through.

During the day, he needs more oxygen as well; 3 ltrs & he can barely break 90. His dr always said he wanted him on the least amount possible & he'd be happy if John was at 88 or 89.

It's a shame cause we were weaning him off of it; and before the last hospital stay, John was on 1/2 a ltr. If we put him on one, he was at 98.

At half a ltr, he was between 93 & 95. With nothing on, he would drop to 86.

A year ago, he wasn't on oxygen; just sometimes for physical therapy.

Tonight was horrible; in the 60's & 70's on 5 ltrs.

I finally had to take him off the bipap and put a nasal cannula on him. He's between 94-95 with the 5 ltrs.

With the high oxygen & bipap, he is exhausted the following morning & can't stay awake the whole day.
That's not good for a dozen reasons.

I'm very scared. He can't go on like this.

They came out with a new MS treatment while John was in the hospital that sounds promising; the first one to include John's kind of ms. We have an appt this week with the dr; hopefully he can make it; he hasnt been able to transfer from the bed to the wheelchair. If she doesn't put him on the Med, I swear I am walking out. She does absolutely nothing; but that's another story for another time.

More later; gotta run.
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Last edited by forevergrateful; 04-29-2017 at 12:16 AM.
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  #5832  
Old 04-29-2017, 10:25 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Old 04-29-2017, 01:44 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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You are both in our prayers,Iris, as always -

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Old 05-01-2017, 07:26 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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I'm sorry Iris, this must be beyond scary. Our prayers are with you and John.
Love,Hugs from the west Coast
Love,
Lyn
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Old 05-06-2017, 06:48 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Unhappy

3-1/2 weeks from coming home from the hospital, we're back on again. We're in the ER, but pretty sure they're going to admit him.

I'm furious on two counts; one, this never should have happened; could've been avoided if the dr listened to me during the last hospital stay in March & April, & a previous stay here in August.

The other reason I'm furious is I've tried to get the pulmonologist to look at/compare chest X-rays & I've gotten no where for almost two weeks. Two weeks of calling the office; talking to staff and explaining everything (too long to type right now), with one incompetitent idiot after another.

I swear I'm on my own with everything and every dr.

The sad part is I'm always right and if they'd listen, we'd have less problems. The drs who are usually good dropped the ball & the usually useless one was the only one doing anything this time.

Will go into more detail later. Should be a long nt till he gets admitted and settled in.

Thanks for everyone's continued prayers.
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Old 05-07-2017, 01:41 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Unhappy

Was taking forever to get John a room. He was going to have to spend the nt on an uncomfortable "bed", plus not get any sleep so I called my friend who is the hospital administrator and she got John a room. Thank god she was on.

They finally got John up to a room close to 2am. He desatted really low on his 02 during the transfer from the ER so they called a rapid response but then his 02 got back up with a bag with a lot of oxygen.

John's breathingvis always shallow and deminished, and a nurse not familiar with him got scared.

An rt supervisor I know took blood gases and he had co2 retention which I figured because one of the pulmonologists had him on too much oxygen (4-5 ltrs).

So they're putting him in ICU now till they get it better. His 02 has been good, at 93-96 with the oxygen.

Anyway, I'm a wreck. We're up since 6am as usual and I usually only get 2-3 hrs sleep but I am so stressed.

Waiting to get back in the room. More later. Prayers please.
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  #5837  
Old 05-08-2017, 11:28 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Unhappy

We're still in ICU. Poor DH has so many things going on. I'm so scared. My friend, the hospital administrator, came around tonight (Monday nt) to see him and was saying how much better he looks from when he came in 2 days ago. He's far from out of the woods.

He's got so many things going on. My poor honey. I have to run. Just a quick second.

Please continue praying for him.
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Old 05-09-2017, 03:48 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Old 05-09-2017, 01:27 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Dear Iris. Our prayers are with you as always. Hoping you get some rest soon. Say to John for us.

Love and Hugs
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Old 05-10-2017, 11:15 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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I am sorry you guys are going thru so much. Those low says are very concerning as they can affect future brain function. Be well.
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Old 05-15-2017, 12:24 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Unhappy

Poor DH has congestive heart failure and kidney problems.

Received bad news last week about his lungs and I've been too upset to post. Trying to type through tears right now and trying to stop crying before John wakes up and sees me like this.

Getting better with certain things (02/oxygen stats); and getting a lot of fluid off of him, but still a long way to go.

I don't think I've been this scared since he was so sick when this whole journey began 6 years ago.

They're going to move him from ICU to a unit one step down lower.

I just can't stop crying. I'm a mess; very stressed out.

More info/detail on his health issues soon.

Mostly the same crap with the nurse situation. I've always felt ICU nurses were the best; experience & training; but of course this place breaks that rule & my belief. We've had a handful of good ones and just as many terrible ones.

I had the call light on yesterday and stood outside the room for 25 minutes with nurses just nonchalantly walking by without asking what they can do or what we needed. This was more than 6 different nurses. And we've had just as many horrible nurses; horrible skills and worse attitudes. And keep in mind this is the intensive care unit. Thank god john wasn't god forbid dying.

This is why I never leave here.

Anyway, more later.

Thanks for the much needed continued prayers.
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Last edited by forevergrateful; 05-15-2017 at 12:27 PM.
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Old 05-15-2017, 03:35 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Iris,

I dont post here often but I wanted to let you know that I read every update and you and John are so often in my thoughts. I havent forgotten the kindness you showed me when I was very new here. Please take care of yourself as best you can, I know you will take care of John as best you can.

I am so sorry for the most recent diagnosis but hopefully a diagnosis means that some of the symptoms can be managed better (like the O2 and getting some fluid off those lungs!). Wish I were closer and could do more than simply keep you in my thoughts.

April
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Old 05-18-2017, 02:19 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Sorry to say, I'm back in the hospital myself. Also due to CHF, I am in heart failutr. Getting help from a nurse has been impossible and I literally cannot do for myself. I've gained 30 pounds this week and water so I'm like the Michelin man LOL. Hopefully once they get the water off of me which they're doing by IV diuretic, That I will feel better we will I'm supposed to get my anti-anxiety meds but I'm told just to relax and think good thoughts because that'll cure me, so frustrating.
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Old 05-18-2017, 05:40 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Thank you all; will reply later; so much crap going on here it's not funny. John and I were saying we can't believe this is a real hospital.

We were switched to a different unit today; we were in cardiac critical care, having been switched from ICU. Then they were moving him to a regular medical floor, where there are many more patients per nurse and no monitors on him. I protested this Tuesday and it just bought us one more day.

I objected to it today, and a dr agreed with me that he's far too fragile (meaning he is still very weak; very sick; still problems with swelling and 02); can go either way. Anyway, another dr finally came in this evening and agreed with me and they're moving him where he can be monitored.

UNBELIEVABLE what goes on; in ICU and a critical care unit!!!

More later; moving to the next room ( second move in 6 hours; ridiculous; never should have happened).

I thank and love each of you for your support. More later.
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Old 05-20-2017, 05:16 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Hi Iris, I am so sorry to hear all you and John are going through. I haven't posted much at all in the last couple of years myself but do watch your posts to see how you two are doing. Health issues have plagued me as well which is why I've been gone. Started with a diabetic foot ulcer, then sepsis 8 times, several amputations finally resulting in a below the knee amputation. No matter how bad it gets I know there are others out there much worse.
My thoughts and prayers always remain with you and John. I know you haven't taken care of yourself yet, please do! John needs you and if you are ill, you're not able to be there to advocate so loudly for him and take care of him.

Hugs always,
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Old 05-29-2017, 08:55 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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(Post started a week ago, May 22. Sadly, not much has changed & this could have been written today.)

I hate this place so much.

I begged them not to pull him with the bed pad he's on, as it would shear his skin.

They didn't listen to me, so he got a Stage 2 wound. Wonderful.

In ICU, they kept putting pads under him that I didn't agree with; and his upper thighs got slit and were bleeding. They didn't pay it any mind, of course, even after I pointed it out to them. I put a barrier cream on all the areas. It's gotten a lot better but not gone, & it hurts John like crazy so I know it's bad.

I wanted him to be seen by a wound care nurse and dr. I understand the St isn't there on the weekends.

Heard the same stupid crap they've said before when something happens on a Friday or Saturday; no ones here till Monday. REALLY?? This is a hospital; open 24/7.

You mean to tell me NO ONE in the entire hospital knows how to do wound care? Give me the supplies; I'LL do it!! I know how to do wound care.

Last time I had to threaten to sue when they said we had to wait from Friday 2pm till Monday for someone; then they got someone sooner with my threat of a law suit.

This time, I called the hospital administrator. My friend isn't on during the day or I know she would have done something.

This is the third time he has gotten a stage 2 wound here. At home I keep everything perfect.

This is another reason why we don't go to acute rehabs after he leaves here; he just comes home, because it's more of the same crap.

At home, I'm RT/ respiratory with his 4 daily breathing treatments; the nurse; the aid; pharmacy; OT; PT; ST; you name it; everything.

Monday, May 29th:

Same crappy care. Had a respiratory therapist today who was in so much of a rush that she did things so poorly that instead of putting him on their bipap machine, she set everything up; put it on standby and just said to push a button to start it & ran out. We were waiting for a nurse or aid to just reposition his shoulders/neck/head; would have taken two minutes but she was too lazy to wait; started the machine and the hose to it popped off so she had to be called to fix it. There's a separate humidifier which she didn't turn on. He got the worst nose bleed ever in here because they forgot to turn on the humidifier and the level of the bipap is crazy high; the pressures. Looked like something out of a horror movie; two inches wide and down his face and as thick as ketchup.

Every single day with every single shift of nurses there are some mistakes. Meds; blood pressures; you name it.

They were so bad, I have to go into more detail when I get the chance.

Just off of the top of my head, they were giving him TWICE the dose of certain meds more than a handful of times; giving him BP meds to lower his BP when it already low; and on and on.

We normally only have manual blood pressures taken because they're more accurate; and he gets meds to either raise or lower his BP based on what it is.

Well, the problem we've been encountering that past couple of hospital stays is the nurses can't take an accurate BP; so John & I got so disgusted, cause it's so dangerous; that we decided yesterday to go back to using the machine for automatic BP's.

He was in ICU one day when the nurse did a manual BP and got 108/40. John is never as low as in the 40s, so I told the nurse it didn't sound right; sounded too low. So she took it again and said 118/40. I said it still sounded low. She let the machine take it, and it was 176/74!!! Now the machine may be off 10 points we have found, but nothing like that!! At either 108/40 or 118/40, we would've given him meds to raise it.

Can you imagine if she did that, and it was really on the 170's? It would've been over 200!!

This same nurse started an IV for John of Lasix which is a diuretic. After she started it and it was running around 15 minutes or so, she noticed in the computer it should have been a pill instead and said, "I shouldn't have jumped the gun and just assumed it was IV. " !!!??????!!!!

That's special!!!!!

They've been getting a lot of fluids off of him and adjusting the doses, and depending upon his kidneys, are backing off from the IVs and going down to pill form if it's too much.

Well, needless to say, after those two critical mistakes, I had to ask for another nurse for him.

Meanwhile, last week was probably the worst week ever. Too upsetting to write about; all I can say now is to please pray for John. He so desperately needs it.

It's not good.

I was downstairs in the lobby days before and I passed the gift shop which had 50% off everything, and they had this plaque that I thought was beautiful. I was reading it and crying in the store. I got it for John. It reads:

"I said a prayer for you today
And know God must have heard.
I felt the answer in my heart
Although he spoke no word.

I didn't ask for wealth or fame
I knew you wouldn't mind.
I asked him to send treasures
Of a far more lasting kind.

I asked that He'd be near you
At the start of each new day,
To grant you health and blessings
And friends to share your way.

I asked for happiness for you
In all things great and small.
But it was for his loving care
I prayed the most of all."

They also had this heart that read "You mean the world to me." I'm always telling John that so I had to get it for him also.

Anyway, I'm just wiped; drained; you name it.

Anyway, we had to put John back on the bipap because he keeps having too much co2 retention, o he's resting now, but will write in more detail later.

Goddess, I saw your post last week & thought you could use some cheering up and probably a good chuckle; so I started typing up something to post; I figured that was more important than posting the never ending mistakes here; but then we had these two serious problems so i haven't gotten to finish; but I will soon. I hope you're feeling better. You and John could be twins; he had major fluid retention & CHF also.

Praying for you along with my DH.
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Old 05-29-2017, 09:03 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Quote:
Originally Posted by debbiedee8 View Post
Hi Iris, I am so sorry to hear all you and John are going through. I haven't posted much at all in the last couple of years myself but do watch your posts to see how you two are doing. Health issues have plagued me as well which is why I've been gone. Started with a diabetic foot ulcer, then sepsis 8 times, several amputations finally resulting in a below the knee amputation. No matter how bad it gets I know there are others out there much worse.
My thoughts and prayers always remain with you and John. I know you haven't taken care of yourself yet, please do! John needs you and if you are ill, you're not able to be there to advocate so loudly for him and take care of him.

Hugs always,
Debbie
Oh, Debbie; sweetie; I am so sorry.

I've missed you so much and always think of you. I missed how close we were during those couple of years and all our correspondence.

I just figured you were busy with your family and all.

I type my long posts off the coupon site on my phone and then go on to copy them to the thread, so I just saw your post after posting what I just did above.

I'm so sorry to hear everything you've gone through.

I'm going to PM you; please look for that.

Mega prayers, hugs and kisses, and all our love to you,

Iris & John
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Old 06-15-2017, 09:23 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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Thursday, 6/15

I have numerous started posts that I never got to finish. It's just been super insane here. Saturday was 5 weeks John has been here in the hospital; this weekend will be 6 weeks. John is supposed to leave, but now we're not sure.

I went to the apt. today for a few hours; turned the air on; not strong or cold; went off after a couple of minutes. Lovely. The maintenance man came out in an hour to work on it; tried numerous things; after working on it for close to two hours, thought he might have got it running; lasted two minutes & went off. Said it needs a new motor. By now it was 5:00pm, so he ran to order one.

Over 3 hrs in the apt; 98 degrees outside; horrible inside.

We simply cannot catch a break!!!!! Thank G-d I went out there!! I can't even imagine if John came home Saturday only for us to find the a/c doesn't work!!! OMG!!

Still so much to post. Thanks for everyone's continued support.

So sorry I haven't posted in forever/weeks, but it's crazy here. I am really starting to feel my age.

More later. Thanks always.
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Last edited by forevergrateful; 06-15-2017 at 09:25 PM. Reason: Typos
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Old 07-01-2017, 10:57 PM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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John came home from the hospital last week after being in there almost 7 weeks.

They made dangerous mistakes up until the day we left. In fact he should have left a day before and they made such a dangerous mistake that it wasn't safe for him to leave, so he stayed another day. Should have stayed a couple more but we were afraid they'd do more harm. This was a respiratory problem that I have to post as soon as I get time. Just unbelievable. We also found out some interesting things from the dr about common dangerous mistakes the EMS/EMTs always make; and unbelievable stories from a nurse there John's had before; one of the few good ones.

As of this hospital stay, he now has congestive heart failure and COPD; which he didn't have before.

He's doing so much better since he's not in there. The usual crapola with the home health agency.

I'm just wiped out; exhausted. More later. First chance I'm getting to post; sorry. Please continue to pray for my DH. AFCers are always a blessing to us.
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Old 07-03-2017, 06:21 AM

RE: Poor DH on Life Support & Dialysis~Update:Has Pneumonia& MayHaveHad A StrokeMonthsAgo

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As of this hospital stay, he now has congestive heart failure and COPD; which he didn't have before.
He may not have been diagnosed with them before but they did not 'happen' because of the hospital stay.
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