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.
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.