Apnea on trach/vent

[Angech]

My sister who has an anoxic injury can't be weaned from the trach/ vent because she has apnea. Anyone ever go through this and does it improve?

[rduwhtmm]

Hi Angech, just wanted to let you know Apnea doesn't always involve sleep or just sleep, otherwise they would have said sleep apena. Apena just means breathing that stops from any cause. Hope this helps

[Angech in reply to rduwhtmm]

Thank you! They can't wean her they say because when she is still she relies on the machine. They put her on cpap mode and sometimes she doesn't breath. Are they suppose to put a mask on her when they turn to cpap mode? I don't know how this weaning works.

[rduwhtmm in reply to Angech]

I am not sure either for where she is at, I know some hospitals have cpap mode built into the ventilator system, so there is no separate mask that gets put on. I will say a prayer for her. Weaning from the ventilator can be hard.

[Angech in reply to rduwhtmm]

Thank you so kind. I wanted to also mention that 2 years ago i had to release my dad from the machine and i regretted it immensely. I still cry over it because there is always the what if. But he had bad sepsis for 3 weeks from a burn injury and they told me it was time to let him go. I can't even go into the details but when they took him off sedation he woke up and i changed my mind but the rest of the family and his brother said it was the right thing. I think you are suffering in the same way. And what do we know, we listened to the dr. So, i pray for peace for you. xo

[rduwhtmm in reply to Angech]

Thank you. It wasn't only my decision, but it did not dawn on me that he neurologist was younger, and I should have gotten an opinion from one with more experience, as I have learned the younger ones tend to give a poorer prognosis, when there could be hope. I miss my mom everyday, she was fine that morning, then we never got to talk to her again. I had not seen her in a year due to COVID. I deeply regret that now.

[Angech in reply to rduwhtmm]

I am so sorry. I can't imagine how you feel. Yes, the trainee drs. are young and heartless it seems. One dr. Insisted on telling me sister is brain dead even after the attending dr. Said she wasn't brain dead. Then she yelled at us that we should think about her life. Etc. I lost my mom last year and i miss her badly also. Sending hugs to you! Give your brain a vacation, take times not to think about it. If you need to chat i am here. Xoxo

[rduwhtmm in reply to Angech]

Thank you so much! Please keep me updated about your sister. The only thing that makes me think the doctor may have been right is I found out no one did CPR on my mom for the first six minutes because they thought my mom was 'breathing'.

[Angech in reply to rduwhtmm]

I understand. My sister had a slight pulse they said. They didn't use the aed to shock her. The hospital is driving me nuts. They called yesterday and said she is stable and to see where i want to move her. That her infections have cleared up. I have been requesting her to go to a hospital where they treat her brain and body since they totally ingnore her brain. They will not help me in any way get her brain help. Today the pallative care dr. Called me for the third time to tell me the drs. want to talk to me that there is no hope for her. Yesterday she was fine, today no hope for her. There are plenty of hospitals in NYC that deal with anoxic injuries. I will have to get a lawyer to get her into one. They tell me to find a dr. But when i call the hospitals all they say is a simple phone call from the hospital she is at and they can transfer her. Why can't they make the call and get it done? They want me to stop her feeds. Is this insane? All while she is making improvement, blinking, holding my hand, trying to pull at the tubes, trying to get up. I feel like i am in the twilight zone. Now she has illeus again. These drs. Plainly don't know what they are doing. Sorry for long read. Xo

[rduwhtmm in reply to Angech]

I am sorry to hear that. I know that if the doctors declare there is no hope for a meaningful recovery, they won't make the call to the hospital you want her to go to and or the hospital will not take them unless the referring doctor backs it. Also, insurance will not cover for brain rehab if doctors state no hope. It's very disheartening.

[Angech in reply to rduwhtmm]

Yes, you are correct and i have a feeling that is what they will say. It is a brain hospital we want, not just rehab as she has medical conditions too. I pray she can get good care.