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trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
313
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
What a day this has been. I am exhausted.

I got up this morning as usual and checked on Lenny. He wanted to be repositioned but was fine. Then I drove my daughter to school. When I got home I checked on him again. He wanted to be on his other side, so I repositioned him again. He said it was harder to breathe on that side but wanted to stay there and had me reposition his hands and arms.

I went upstairs to lay back down for an hour. Not 15 minutes later I woke up out of a light sleep (or maybe I was just drifting off) to a horrible noise from downstairs. I flew down the stairs and Lenny was laying in bed with his Bipap still on his nose but it was completely off his mouth and he couldn't breathe!

He was able to tell me to get him up, so I thought he'd be OK since he could still talk. I got him up to a sitting position and tried to get the bipap back on him. He was gasping for air and so weak that he just slid off the bed. I propped him up as best as I could and ran for the phone to call 911. I can't even describe what a horrible helpless feeling I was experiencing.

When he got to the hospital the ER doc said that if he wasn't an ALS patient he would have already entubated him, but he wanted to talk to me first. My husband does not wish to have a trach and vent. So I made sure that the dr. felt there was a chance that he would be able to come off of it and go back to the bipap. Lenny was able to nod yes when asked if it was OK to be entubated. OMG the poor guy couldn't breathe!

Everyone at the hospital is treating him well. One of the ER nurses told me that her uncle had had ALS, and one of the ICU nurses told me her grandfather passed from it. He is resting comfortably since they are keeping him sedated.

Aside from the emotional trauma of the day, I guess I am just scared that they will not be able to wean him off the vent. His ABG was 113 in the ER but came down quickly once he was vented.

I guess I just needed to vent. Please keep us in your prayers. Thank you all.
 
Oh Linda honey, I'm so sorry! Of course you'll be in prayers. I'm sure you're exhausted... please try to get some rest for yourself!
 
I am sorry for the ordeal you just went through! I wish I could talk him into agreeing to get a tracheostomy. I love what it has done for me.
 
Linda, I am thinking of you and Lenny and hope that he does better tomorrow. It sounds like he is in good hands so that you can get some rest.
Barry
 
i am hoping the beat for both of you
 
Linda, I am also hoping for the best for you and Lenny. Please let him know we are thinking of him and rooting for him!
Take good care of yourself too. I'm so sorry you had to go through that stressful experience.
All the best to you and your lovely family.
Rosella
 
Linda
Thinking of you and Lenny and hoping for the best.
Dana
 
Hope Lenny's stay at the hospital is a short one! Y'all are in my prayers!
 
Thinking and praying for you. Positive thoughts are being sent to you.

Dana
 
Linda,

You and Lenny are in my prayers....
 
Linda and Lenny,
Oh I am so sorry you have been through this ordeal, just hoping that this will be a short stay and Lenny will start to feel stronger. Please take care of yourself, you are such a good person, and you need some rest and respite. Please keep us informed and know that we are with you virtually, bless you and your family.
 
Linda, I'm so sorry to hear about this recent turn of events! Hope that Lenny gets better soon and can come home again. Get some rest.
Collleen
 
You are in my prayers,hope things turn out for the best.
 
Dearest Linda,

Bless your heart...my prayers are with you. God will take care of all of this, I'm sure! I hope you are resting.
God bless,
Brenda
 
Linda,

You and your husband are in my prayers. I don't know exactly where you are located but I live in Naperville. If there is anything I can do to help you, let me know. Feel free to PM me!

Debbie, R.N.
 
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