Sedation weaning, non responsive

[Faithful2020]

Hello

My mom has been on a ventilator for 3 weeks and despite the odds she’s somehow maintaining okay. Definitely not close to weaning her off yet but the nurse said they tried to lower her sedation from 3 to 1 and she didn’t respond to any pain. She also said the neurologist couldn’t get her to open her eyes or gag or anything.

Has anyone experienced this with their loved ones? Could it be that she’s been heavily sedated for 3 weeks that she’s not responding as they want her to? Doctors keep thinking brain damage due to strokes she might have had while on the ventilator, but nothing has been confirmed. Her ct scan came back normal and her eeg didn’t show anything abnormal. She’s getting an MRI of the brain but she’s not stable enough yet for that.

Thanks in advance for sharing

[Sepsur]

Because of hypoxia, they were really concerned I would have brain damage - (I definitely have a different thinking process after ICU). I took 11 days to wake up fully from 57 day coma. I was responsive but I took along time to come round hence the worry that I was brain damaged. Everyone is different and there is no ‘normal’ because of tolerances to sedation and type of paralysing agents used to sedate in first place. CT scan is standard as are MRi to reveal any issue. I hope you have more substantial info soon.

[Faithful2020 in reply to Sepsur]

Thank you for sharing. I keep reading different things as when people fully wake up and I’m somewhat more calm knowing there’s really no “normal”. Her doctor keeps saying he’s very concerned because she’s non responsive, but I told him to wait because she could possibly be experiencing the secondary effects of the sedatives. He didn’t seem so encouraging as if he really thinks my mom is never going to recover. I’ll keep doing what I can and pray with all my heart so she can soon come home. Thank you.

[Ferham]

As you know my husband was in a coma, he was non responsive and when he came off the ventilator, they zoomed called us, he was like a zombie. We were devastated , eventually (it felt like a lifetime ) he started to respond. With Covid there is no normal, as our consultant keeps telling us it's an unknown beast . Your mum has been heavily sedated and is possibly just waking up slowly. Are you able to see your Mum or send in videos so she can hear your voice etc ? I pray too she is home with you soon. x

[Faithful2020 in reply to Ferham]

I hope and pray that that’s the same with my mom. She’s only been off sedation for a few hours and then she has to go back on it because she gets agitated. So technically she hasn’t even gone 1 full day without any sedation. It’s just so hard to be hearing that she can potentially have this and that. It makes me feel so much worse. We’ve FaceTimed a couple times and I’ve been able to see her from a distance a few times as well. I was there Wednesday and it was really hard to see her in those conditions. I’m sure you know my pain. But I prayed with all my heart and I left knowing that someday my mom will be home again. I wish I could just know how long before that day 😞 but somehow I’ll keep strong and be very faithful.

Thank you for your prayers. They are truly appreciated

[Color27]

I'm going through the same. My mom has been intubated for 20 days today. She was placed on Precedex and they removed the propofol and fentanyl 4 days ago to see if she'll wean off sedation better. She got worst when they placed her on precedex. Her heart rate went up to 150s and blood pressure to 170s. She also was starting to get asynchronous with the vent and they needed to increase vent to 100%. with her saturation between 80's to low 90s. We thought we were going to lose her already because they couldn't even move her as her BP and HR would spike up. The following day they placed her back on even higher doses of propofol and fentanyl just to control her. In some ways, I kind of feel guilty because I did ask the doctors if there's any other sedative she can be given to help wean her off her sedation. Now I learned to be patient and understand that slow progress is progress. They try to pause her sedation 1-2 hours a day and the most they got from her is a grimace when they press on her nail beds. Sometimes when I talk to the doctors they say she doesn't respond and sometimes they say she does grimace. So I guess it also depends on how much sedation she's on. Doctor's are not very encouraging because they did see that she had a significant stroke while on the vent but like your mom, they can't do an MRI. Praying for both of our moms to get through this. I trust in God and leave it all up to Him.

[Ren2985 in reply to Color27]

Hi there, I just read your response and I amWondering how your mom is doing?

[Color27 in reply to Ren2985]

She eventually woke up and managed today be off sedation. We were able to talk to her and she responded appropriately. She proved the doctors wrong when they said she would never have meaningful conversations with us. She was eventually transferred to a long term acute care facility for ventilator weaning then a subacute facility closer to our house. Unfortunately she’s still on a ventilator and a few days ago developed ventilator associated pneumonia. She had to be sedated again for 4 days and now we’re waiting for her to wake up again. I pray she recovers soon. This disease is so brutal.