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Snowman78

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Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
The day started out badly from the begining. I went to get him like I always do about 8:15 and I had trouble rousing him up at all he would halfway open his eyes and then back out. I asked him if he wanted to get up and on the potty like we do everyday and he said no, I asked if he was ok and he nodded yes, I asked if he was just still tired as he is usually awake waiting on me and he nodded no, so I asked if he was comfortable and he nodded yes and went back to sleep. The nurse came in and checked him and all vitals checked fine. He finally woke enough to get a quick bath and halfway eat breakfast and then back out. He was resting well whenI went to work and then mid afternoon he had his aid get mom and was crying and told her he loved her and loved us all and he could carry on any longer. She called me and I rushed home and he did the same and we called my sister so he could try to tell her. The nurse got to the house before I did and he said his head hurt from the top of his head all the way down his neck and into his shoulders so she gave him a muscle relaxer and he wanted some morphine. A short while later he wanted to potty so we took care of that and by that point he settled on down and seemed to be doing better and he told me to go back to work that I may need the time later. I don't know what happened to bring all of this on but it seemed to go as quickly as it started. This emotional roller coaster SUCKS!
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
Hugs to you snow, no words of wisdom as I am so new to this as a CALS, I am learning that there is no normal in any form of this disease either in it's progression or for how it effects our PALS.
Love Gem
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Oh Snowman. Words fail me, but my heart reaches out to you and all your family including your father.

Please keep us updated as you can.

I would be honoured to personally be virtually holding your hand.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Snowman, please know that we are thinking of you. I wish that there was something more we could do. Yes, this rollercoaster sucks--and you are having a terrible ride right now. Please keep us updated. Holding your hand...
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
I am so sorry Snowman. The situation with our pals is so hard and trying to work on top of it makes it worse. Hugs and prayers to you. Steph
 

Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
Sounds like more than a rough day! I'm so sorry that you are going through this, please keep us updated.

Janie
 

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
So far today he seems to be doing better than yesterday. It was rough to deal with to say the least. I hope to not have anymore dress rehearsals to make somewhat light of yesterdays situation. He is still very tired and weak today but seems to be more comfortable and resting easier today. Thanks so much for ya'lls support it means so much!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
snowman I think we would agree we don't need to try out any dress rehearsals at all.

still thinking of you, whew!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Snowman, oh, that is so emotionally draining for all of you. he sounds so tired...sending a big hug and holding your hand. let your mom know that we are thinking of her here as well and hugging her too.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
I am so sorry Snowman. I feel like that is all I said to people today on this forum. I always feel so bad that I can't do anything more. This disease just royally sucks. The good part is that you have been there for your mom and your dad through all of this. That has helped your dad more then you will every fully realize. You are making a difference even though at times I'm sure it doesn't feel like it. Hugs, Kim
 

rosec

Distinguished member
Joined
Aug 2, 2012
Messages
330
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
CA
City
Costa Mesa
I hope your dad is doing better Snowman. You are doing a great job.
 

SMP51

Senior member
Joined
Oct 31, 2011
Messages
675
Reason
CALS
Diagnosis
11/2010
Country
US
State
FL
City
Fort Walton Beach
how are his 02 levels and breathing. a build up of co2 can cause those head aches.
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
That was the way Joe was. I can only imagine what was going thru his mind..........hugs to you. I know how difficult this is for you but know there is nothing you can do but it doesn't make it any easier.

Debbie
 

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
His O2 level checks good when this happens. Plus except to eat he stays on bipap around the clock.
 
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