Responding to commands after sedation off or reduced

[Blessings28]

How long did it take for you or your relative to start responding to commands when sedation was stopped? My husband has been sedated 15 days with propofol and is on dilaudid too. They removed sedation a few days ago and gave him over a day to respond to commands. He didn't. They sedated again and now they reduced it to only 5 mcg and its been over 24 hrs and he won't respond to commands. They may do head CT because they are obviously concerned his brain isn't functioning. Anyone have experience with how long it takes to respond?

[Ferham]

Hi, My husband took several days to respond to any commands. Even the most basic movement was too much for him. He after 5/6 days began to slowly follow finger movements. He was in ITU in the 1st covid wave, so we were unable to see him, when i did see him on zoom , he looked like a zombie .As he was responding so slowly they did a CT scan on his brain, thankfully all was okay . He then suffered severe delirium for several weeks . Eventually after 3.5 weeks my husband began to return.

Hang in there x

[Blessings28 in reply to Ferham]

Thank you. I appreciate you sharing your experience. They are doing the CT scan right now on my husband. I pray everything looks good. It's been a brutal 15 days so far . It helps to know others have gotten through everything my husband is going through.

[FamilyHistorian]

All I can really say that I am told it took me a really long time to come round. Weening off the sedative drugs effects different people in different ways. In my case they had to re sedate me many times and I really didn’t come out until nearly 2 months later. There may be moments when the patient appears to be awake but they may not be!You do need to take care of yourself

[Blessings28 in reply to FamilyHistorian]

Thank so much for the helpful information.

[Mddaz1]

My dad (57, M) was under sedation for 45 days beginning in August due to COVID and a MRSA bacterial pneumonia.

It took him 6 days after the sedation was turned of to respond to any stimuli. The first noticeable response was he began tracking the nurse with his eyes.

Around day 10 he began to acknowledge my presence by squeezing my hand ever so slightly.

Around 3 weeks, he began to communicate by head shake.

For my dad it was a long road to come out and get back to a functional cognitive state.

[Blessings28 in reply to Mddaz1]

Thank you for sharing your experience. When he started opening his eyes were they open like someone awake or were they half open and appeared to be glazed over and not actually seeing anything?

[Sepsur]

It took me several days to properly come around - we are all different & given different paralysing agents & sedatives which can retard waking - as can renal issues & dialysis

[Blessings28 in reply to Sepsur]

Thank you sharing your experience. It helps.

[qmcsurvivor]

Hi, all I can say is I remember someone saying I was being moved to a ward but definitely did not know what was real or not at that point and have no idea how long it took for me to respond, I had ongoing thoughts bizarre in nature for at least 10 days after being woken up I was told I came round fairly quickly and that often they had to re intubate others who had been sedated for my length of time (10 days) so lucky.

Not sure if others have had this but even now 13 month later I have dreams yet am also semi awake aware that I am in my own bed at home but hard to say if the virus caused this I certainly didn't have this before Covid.

Take care and I wish you all well

😆

[Blessings28 in reply to qmcsurvivor]

I'm glad you came around quickly and didn't have to be reintubated. That would be so frustrating for me if my husband came off ecmo and was extubated to have to be reintubated.

[Copse77 in reply to Blessings28]

It will take awhile in my experience for him to respond as the sedation drugs take time to pass through the system and if he has been on ECMO I am thinking his kidney function may not be working properly. There is some useful information in the ECMO family website including stories from families who have been through this. Our family experience is the most recent story you will read first. I I will find the link for you. Good luck for your husbands recovery. It will take time but keeping a timeline of little areas where he makes progress will help you focus on positives for days when there may be setbacks. Wishing you both all the very best for recovery.

[Blessings28 in reply to Copse77]

You are so right about needing to keep track of of positive moments because for the last 19 days it feels like everyday I've been given more bad news about his condition. Today was a very difficult day trying to be hopeful.

[Copse77 in reply to Blessings28]

I do understand how hard it is for you. Keep focused on the positive, and remain hopeful. It is a rollercoaster of ups and downs. ICU that is. Keep talking to your husband and doing all the good things you are doing.

[Copse77]

Here is the link. ecmofamilysupport.com/ecmo-...