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  #1  
Old 09-27-2012, 07:56 PM
Redefining normal daily
 
Join Date: Jul 2004
Location: Frederick, MD
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Back to caretaker mode

Ed's had a series of strokes starting Sunday, leading to him, me, and Darling Wife spending the night in ICU. Roller coaster time with swings from "1/3 or more of his brain is damaged/best case end state is a vegetative state" to Ed screwing with the ICU nurses by tapping his finger on his EKG leads to make his heart monitor look like a crisis and cracking jokes about bad baby raising techniques.

Next 48 to 72 hours will set the tone for here on out. Gonna be a long weekend.

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1961 220b: first project car - sold.
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  #2  
Old 09-27-2012, 08:29 PM
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Quote:
Originally Posted by ramonajim View Post
Ed's had a series of strokes starting Sunday, leading to him, me, and Darling Wife spending the night in ICU. Roller coaster time with swings from "1/3 or more of his brain is damaged/best case end state is a vegetative state" to Ed screwing with the ICU nurses by tapping his finger on his EKG leads to make his heart monitor look like a crisis and cracking jokes about bad baby raising techniques.

Next 48 to 72 hours will set the tone for here on out. Gonna be a long weekend.
I will keep Ed and yourself in my Prayers.
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  #3  
Old 09-27-2012, 08:40 PM
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get well soon!
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  #4  
Old 09-27-2012, 09:43 PM
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Sorry to hear this. I can fully understand what you're going through.
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  #5  
Old 09-27-2012, 09:45 PM
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I am very sorry to hear this. Thoughts and prayers going out.
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  #6  
Old 09-27-2012, 10:10 PM
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Ed playing games should be a good sign.
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  #7  
Old 09-28-2012, 07:40 AM
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Jeesh Jim, don't you folks ever get a break? Glad to see Ed is alert enough to tease people. He can't be too bad if his normal character is showing through...and he is a character! Hope this isn't too hard on DW or you. Nap when you can. Will keep you all in our prayers.
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  #8  
Old 09-28-2012, 07:42 AM
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Very best of luck with it. It's very challenging, but family comes first.
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  #9  
Old 09-28-2012, 07:47 AM
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Dang! Our thoughts are with you all, Jim!
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  #10  
Old 09-28-2012, 01:01 PM
Redefining normal daily
 
Join Date: Jul 2004
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Hour by hour changes. Ed was much more lethargic and harder to wake up overnight. Speech more difficult, less and less movement and strength. Docs say roller coaster is quite possibly going to continue.... better for a while, then worse, then back to slightly up.

Bottom line is we won't know extent or permanence of damage until.... we know. Neurologist says "there is no model for Ed - based on his MRI, he should be completely paralyzed on his left side - I can't explain why he can move."
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1961 220b: first project car - sold.
2000 CLK 430: first modern Benz - sold.
2001 CLK 55: OMG the torque!!! - sold
1972 280SE 4.5: Baby Gustav
1991 300TE 4Matic: Gretel the Snow Bunny - sold
1978 300SD: Katz the Free Man - given away
1980 Redhead: Darling Wife
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  #11  
Old 09-29-2012, 02:44 AM
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Quote:
Originally Posted by ramonajim View Post
Hour by hour changes. Ed was much more lethargic and harder to wake up overnight. Speech more difficult, less and less movement and strength. Docs say roller coaster is quite possibly going to continue.... better for a while, then worse, then back to slightly up.

Bottom line is we won't know extent or permanence of damage until.... we know. Neurologist says "there is no model for Ed - based on his MRI, he should be completely paralyzed on his left side - I can't explain why he can move."
the brain is a marvelous and mysterious thing, I hope he continues to improve, not everyone can say they befuddled a neurologist
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  #12  
Old 09-30-2012, 09:11 AM
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Hi Jim and Meredyth- let me know if there is anything i can do. Thoughts and prayers are with you.
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  #13  
Old 10-01-2012, 12:06 AM
Redefining normal daily
 
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Day to day progressions and regressions. At this point, he can talk some, remembers everything (housekeeping person who cleaned his room 4 days ago was back today, and he said she had 13 grand kids..... and she laughed and said he was right). Not everything makes it back out - he drifts off, loses focus, falls asleep, all of the above. Then he'll make a comment or ask a question that makes it clear he's heard and understood everything going on in the room.

Immediate challenges include getting him to the point he can eat - getting pureed everything and thickened liquids (never knew thick water existed - he's had that, OJ, milk - all the consistency of honey). Even with that, it's tiny spoonfuls and multiple chasers to make sure he gets everything out of his mouth. Aspiration risk is high.....

Side note on pureed foods: thought they'd screwed up his breakfast since there was a waffle on his plate. Questioned the gal who'd dropped his tray - turns out it was in fact a pureed waffle, molded (and tinted) to look like a waffle. Turns out the have a mold for peas and green beans too. One step this side of Soylent Green if you ask me

Other immediate challenge is movement. Ed's a big guy (he claims 250, I'd guess closer to 300). Seriously bum knee which gets all manner of aggravated when he's immobile. Weakened now by.... being immobile. And his balance is an unknown, as he's not been up since the second round of strokes hit Tuesday.

Part of what really sucks about all this is that Ed's been working an honest to goodness full time job for the past couple months - first employment in ~ 5 years or so. He's a life skills coach for the ARC; taking clients to their jobs, helping them cook, etc. He is actually quite good at it - which is all sorts of ironic given his inability to demonstrate full functionality in his own life.

Anyhow - day by day. Immediate event of the moment (what has me sitting out in the hall) is a crew is in his room trying to figure out how to get him up enough to do his business. 4 big ladies debating bed pan (he simply can't/won't do the big deal on one) vs. bedside commode (one of the ladies says no way he's not gonna wobble off) vs. bed pan + bed bent into full sitting position.

And Darling Wife is in there orchestrating. Bless her soul - she is amazing.
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1961 220b: first project car - sold.
2000 CLK 430: first modern Benz - sold.
2001 CLK 55: OMG the torque!!! - sold
1972 280SE 4.5: Baby Gustav
1991 300TE 4Matic: Gretel the Snow Bunny - sold
1978 300SD: Katz the Free Man - given away
1980 Redhead: Darling Wife
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  #14  
Old 10-01-2012, 12:23 AM
Redefining normal daily
 
Join Date: Jul 2004
Location: Frederick, MD
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Quote:
Originally Posted by Mistress View Post
Hi Jim and Meredyth- let me know if there is anything i can do. Thoughts and prayers are with you.
Thanks very much Mistress. Do you know anything about Kernan or Shady Grove Rockville inpatient stroke rehabs?
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1961 220b: first project car - sold.
2000 CLK 430: first modern Benz - sold.
2001 CLK 55: OMG the torque!!! - sold
1972 280SE 4.5: Baby Gustav
1991 300TE 4Matic: Gretel the Snow Bunny - sold
1978 300SD: Katz the Free Man - given away
1980 Redhead: Darling Wife
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  #15  
Old 10-02-2012, 09:20 AM
Redefining normal daily
 
Join Date: Jul 2004
Location: Frederick, MD
Posts: 445
Tough day yesterday. Ed's got a "raging" (doc's term) UTI. Resorted to asking one-choice questions and getting him to wiggle his foot to answer (wiggle your foot if you want the TV on .....). It is absolutely clear that Ed's in there - and that everything going on around him is tracked and understood. He just can't put together enough resources to get much of anything back out for portions of the day - and yesterday the "can't" portion was damn near every minute of the day. Yet he was fighting to raise his left arm for a good solid hour after the neurologist's last check in of the day - managing to touch his hat and wiggle his feet in victory when he did.

All the docs agree that the UTI can and has contributed to a pretty dramatic backslide yesterday; no answers or even predictions on how much improvement will recur once the antibiotics do their thing. Next three days are critical. Again.

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1961 220b: first project car - sold.
2000 CLK 430: first modern Benz - sold.
2001 CLK 55: OMG the torque!!! - sold
1972 280SE 4.5: Baby Gustav
1991 300TE 4Matic: Gretel the Snow Bunny - sold
1978 300SD: Katz the Free Man - given away
1980 Redhead: Darling Wife
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