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whimsy_1971

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Dave was put in the hospital last monday and we just returned home today on my request.

He was having difficulty breathing and it was alot more than normal. He was having very short breaths and girgling in his throat. I was suctioning him like crazy and he had so much anxiety.

They finally go him comfortable. After 7 days of staying in the hospital and being very discouraged and totally blown away by how little help there was there. I finally had enough. We had been there and the only thing they did was give him his meds and feed him. I said I can do this at home. I couldnt even leave the room to go get something to eat, 1/2 the nurses couldnt even suction him, I had too or they said they could call in respatory. Hello he could choke by then. I had to ask for help to clean his bottom daily. (he has 3 bed sores now on his bottom) I asked the Dr if we could would be able to go home on the Morphine drip, and he said ya. So I said great lets go. I then told Dave that we can always come back if he has more difficulty and the Dr said well he will.

I went down to talk with the dr and asked it I was making the wrong decision and he said he thought it was ok, but that it was only a matter of time and that we are just waiting for an infection to set in and that he felt that if one did we should not do anything for him but make him comfortable so that he doesnt have to suffer any longer.

I just dont know what to think of this. I told him I wasnt sure where we were at on his progression. I know its not good, but what the heck.

anyway we are home on hospice again. He is much more comfortable then last time, he is on a morphine pump and adavane along with other meds but he is comfortable now.

Just a little update.

I want to thank all of you for your support and help.
 

hopingforthebest

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Prayers for you, Christy, for strength and for Dave for comfort.
Keep in touch.

Patty
 

BethU

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I'm praying for you both, too. That hospital experience was an ordeal, but I'm so glad Dave is home and comfortable.

Take care of yourself, too.
BethU
 

brendapals

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Yes dear, my prayers are also with you. I hope you and Dave both are resting tonight. None of us will ever know what the future holds for us, we just have to try to stay strong and know that God will take care of us,
Hugs and prayers,
brenda
 

brooksea

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It seems no pALS has a good experience in the hospital!

Christy, I hope you and Dave are able to get some peace and that things might improve for y'all.

Thinking of you...
 

Jeannie

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Dear Christy,
My prayers are with you and Dave. I think that you made the reight decision to bring him home. I would write to the hospital and let them know how dissatisfied you are with them and their lack of care. Unless people let them know the higher ups think all is well. I found when we were in with my MIL that barley anyone there had experience with an ALS patient. We didn't leave her alone in her room for one minute for fear that she wouldn't be taken care of because they can't understand her.
You are in my prayers
In friendship
Jeannie
 

whimsy_1971

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Jeannie,

I think your right. I felt the same about not leaving . Im starting to have problems understanding him now so I knew they couldnt. Heck as I said they couldnt even suction.

We had a little rough night last night, he was back to moaning and fightinng his sleep again but Im hoping that will stop.

Thanks to all of you. I missed this site when we were gone. You guys mean more to us then what I even knew.
 

olly

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hi christy

forwhat its worth i think you did the best thing in taking him home.
with the sound of it you can take better care of dave at home,and he will feel more at ease and comfortable in his own surroundings.
i hope his sleep will improve and you can get more rest.
my thoughts and prayers are with you both.
take good care.
caroline
 

Icanmanz

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Hi Christy, just read your posts. Would like for you to know my heart goes out to you and Dave. May our Father bless Dave with the best of care. Keep us posted. Let us know how Dave is doing. I still remember my son's final days, very heartbreaking, but he was blessed with a peaceful departure that did not linger. Hated to see him depart, but deep down I knew that he was finally at rest. I still miss him soooo. Went out with my other son to eat at one of my deceased son's favorite places. For a while I just sat there thinking about how he used to be. May God bless you and Dave.

Irma
 

CindyM

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Christy and Dave- my thoughts are with you both today. Hugs, Cindy
 

califsand

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Hi Christy, it sounds so much like Dave is experiencing the same symptoms as my Dad right now, and the same meds. I think you did the right thing too. He wasn't getting the quality of care in the hospital that he gets at home and it doesn't sound like him being there gave you any kind of break, if anything, it probably caused you more stress than having him at home!

At this stage in the game it is hard to know how to cope with the breathing problems and the need for constant suctioning. Doctors aren't sure what to say because ALS is so unpredictable. If our PALS had lung cancer and they started having breathing issues like this Dr.'s would be able to give a more definitive time frame for life expectancy but because ALS goes through so many ebbs & flows sometimes, getting worse, stabilizing or even getting somewhat better, it is just impossible to figure out. My Dad's Doctors really avoid talking about time frames because Dad constantly proves them wrong. He spent 3 years at a 2 month life expectancy... and now is going on 6 months with a 2 week life expectancy.

It is hard and I know what you're going through. All we can do is try our best to help them be comfortable - with as little pain & anxiety as possible. Not sure how we are supposed to stay sane but somehow, maybe just be the skin of our teeth, we will.

Take care,
Sandy
 

whimsy_1971

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Dave has not been feeling well the last couple of days. He has been running a low grade fever for the last week and today it is up to 100 and he has been coughing and gagging. I have been suctioning him and the mucus smells sour but is a cream color. He has been again very short of breath.

The hospice nurse said that she was really worried about him, and that is the first time she has said that to me. She said he did not look well, and told me to ask Dave if there was anyone he wanted to come over to see. She said he is very dehydrated and is not flushing out what water he is comsuming, and his body is shutting down and has been. She told me not to try and hydrated him as she did not feel his kidneys are functioning properly and would probably swell even more than he is.

She said she thought that she would see him on monday but to really keep an eye on him this weekend.

Not sure what to expect, but he has pulled through with more then this happening.

Please pray for Dave.
 

andyvaughn

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Christy,
I am so sorry for what you are both going through...you and Dave are in my prayers.
Andrea
 

strikeout

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Christy,
You and Dave are in my thoughts. I'm sure he is much happier being at home. I know from first hand experience you get little or no rest in the hospital. Blessings to you both.
 

Flowerpot

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Christy

Words fail me - you are a wonderful person and I am sure you have done the right thing for Dave. Keep safe and know there are many people in this community who are thinking about you both.

Kind regards

Flowerpot.
 
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