kljack16
Active member
- Joined
- Sep 18, 2020
- Messages
- 45
- Reason
- Lost a loved one
- Diagnosis
- 08/2020
- Country
- US
- State
- MS
- City
- Starkville
Hi Laurie - thank you for the thorough response. I’m sorry I’m so delayed in responding to you. Before we could get into the LTAC (due to no beds), he passed away, February 10.
He was still trying to decide on a trach, and leaning heavily against it. After a week in the ICU, I strongly believe they effectively killed him (or at least significantly accelerated his death). I stupidly didn’t know all the overload of CO2 signs, but I think there were a lot there.
They insisted on putting him on their BiPAP even though we pushed back hard. They said it was the only way they could adequately control his O2. I reminded them over and over and over that the bigger concern with ALS was the build up of CO2, but they said their BiPAP accounted for that.
By the time they said we had to decide about intubation, since that was their only option left to keep his oxygen levels from following, they had given him so much morphine for pain, he couldn’t tell me what he wanted. The day before, he told the LTAC Rep that he did NOT want a trach, and since it was clear if they intubated him, he would have to be trached, I said to just make him comfortable and I wanted to take him home, if that was at all possible (they made it seem like we had days). They moved him back to our BiPAP, and within a minute, he was gone. I believe he was already gone and would not have survived the intubation. So, my only solace at this point is knowing I was with him. It doesn’t help much, but it’s all I have.
Please make sure your members know the signs of too much CO2, and as much as you think you can rely on the education of the nurses, doctors and respiratory therapists, sometimes they are so busy focusing on one thing they lose track of what could actually kill an ALS patient.
Thank you for this forum and all the help and support you’ve given us over the past two and a half years. It’s been invaluable. I pray they find answers soon so someday, no one will ever have to go through this wretched, hateful disease.
He was still trying to decide on a trach, and leaning heavily against it. After a week in the ICU, I strongly believe they effectively killed him (or at least significantly accelerated his death). I stupidly didn’t know all the overload of CO2 signs, but I think there were a lot there.
They insisted on putting him on their BiPAP even though we pushed back hard. They said it was the only way they could adequately control his O2. I reminded them over and over and over that the bigger concern with ALS was the build up of CO2, but they said their BiPAP accounted for that.
By the time they said we had to decide about intubation, since that was their only option left to keep his oxygen levels from following, they had given him so much morphine for pain, he couldn’t tell me what he wanted. The day before, he told the LTAC Rep that he did NOT want a trach, and since it was clear if they intubated him, he would have to be trached, I said to just make him comfortable and I wanted to take him home, if that was at all possible (they made it seem like we had days). They moved him back to our BiPAP, and within a minute, he was gone. I believe he was already gone and would not have survived the intubation. So, my only solace at this point is knowing I was with him. It doesn’t help much, but it’s all I have.
Please make sure your members know the signs of too much CO2, and as much as you think you can rely on the education of the nurses, doctors and respiratory therapists, sometimes they are so busy focusing on one thing they lose track of what could actually kill an ALS patient.
Thank you for this forum and all the help and support you’ve given us over the past two and a half years. It’s been invaluable. I pray they find answers soon so someday, no one will ever have to go through this wretched, hateful disease.
