Not waking from Sedation: Hi, I’ve posted a few... - ICUsteps

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Not waking from Sedation

Heartgal151 profile image
42 Replies

Hi,

I’ve posted a few times about my dad who is in ICU with Covid-19. This is day 14.

His oxygen requirement has went back up to 60%. He is now completely off sedation - at the weekend he was scrunching his face up and moving his arms in response to touch etc but now he is doing nothing. They are concerned that he is not responding as they would expect.

I know everyone recovers from the sedation differently but is it normal to do absolutely nothing? They are going to do a brain scan but have to wait until Wednesday when he is finished dialysis. I feel ill with worry.

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Heartgal151 profile image
Heartgal151
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42 Replies
DrARDS profile image
DrARDS

Hi Heartgal,

Firstly stay positive.

Following your journey; like mine, it appears to be up and down.

Coming off sedation is amazing from what I’ve heard and not everyone responds the same...maybe it’ll just take a bit longer?

I’m assuming with no sedation, they have extubated?? That alone is amazing if so. Small steps. Is temperature and CRP okay?

Heartgal151 profile image
Heartgal151 in reply to DrARDS

No they’ve not extubated, he needs to be able to obey commands to be extubated so they were hoping he’d have woken up by now. It just seems strange that he was responding and now he’s not doing anything at all 😔

His temp is still down and CRP still coming down. I’m just so worried that he’s had a brain bleed or stroke and they can’t check until later in the week when the dialysis finishes. I’ve had awful anxiety the last 2 days and I’m thinking I’ve had an underlying instinct that something wasn’t right?

My mind is in overdrive x

Sidra89 profile image
Sidra89

Hi Heartgal151 . I am going through the same with my mom. From everyones comments and just searching the internet, as you said everyone wakes up at different times. It can take upto 6+ days. Do not let the doctors scare you (that was me yesterday)

Heartgal151 profile image
Heartgal151 in reply to Sidra89

Has your mum done anything at all? Yesterday he screwed his face up when getting his temperature taken but today absolutely nothing xx

Sidra89 profile image
Sidra89 in reply to Heartgal151

They said she had basic reflexes .. like she flinched when they pressed her nail.. they did ct and that showed no abnormalities. They will have a neurologist take a look.. i am beyond scared but I pray your dad as well as my mom fight through this

Heartgal151 profile image
Heartgal151 in reply to Sidra89

I’m really struggling today I just can’t stop crying. The thought of him not recovering is just incomprehensible to me 😔 xx

Sidra89 profile image
Sidra89 in reply to Heartgal151

Completely understand.. im going through this as well..

Heartgal151 profile image
Heartgal151 in reply to Sidra89

What are you doing to cope? I’m not working I’ve taken time sick and I have my kids at home so really trying to maintain some normality but struggling with it x

Sidra89 profile image
Sidra89 in reply to Heartgal151

I took time off too.. just praying non stop .. cant eat, cant sleep.., just staying close to the family I have near. Not being there with her is taking a toll too. They said they will extubate her today and we told them to lower the levels a little before we give the ok to extubate.. her blood oxygen levels went down a little.. it’s just a roller coaster

Heartgal151 profile image
Heartgal151 in reply to Sidra89

I’ve called this morning and his oxygen has come down again and he’s opened his eyes a few time’s 🙏🏻🙏🏻 Pray this is the start of him coming round x

AKAICUsurvivor profile image
AKAICUsurvivor

This link might help everyone - he has a very irritating voice unfortunately 😳

intensivecarehotline.com/qu...

NICOLETTE2020 profile image
NICOLETTE2020

Having a loved one in ICU and critically ill is awful and then add the visitation ban on to that and it's absolute hell. There were a couple of times doctors had the 'talk' with me about the possibility of my Dad not surviving but he is in general ward now so your dad might just be taking longer to rid the sedation from his system because of his kidneys. Staff told me that it takes longer to metabolise some drugs if kidneys are not functioning well.

Heartgal151 profile image
Heartgal151

So he is now squeezing hands on request and obeying commands. I asked them to put the phone to his ear and he heard me, eyes flickering and mouth moving to respond 😭😭xx

DrARDS profile image
DrARDS in reply to Heartgal151

Wow! Amazing. God bless him, the icu teams and all our relatives in the same scenario.

I hope and pray for we get positive news soon. It’s been so tough and I’m a broken man, but this gives me hope.

You must be beyond happy? 🙏🏽😍

Heartgal151 profile image
Heartgal151 in reply to DrARDS

I am cautiously elated. Still waiting on my call from the doctor which i get everyday and they are always good at bringing me back to reality with a bang. But that’s the most positive I could’ve hoped for considering they were talking about brain bleeds etc. It’s a bloody rollercoaster!

Really hope you get some good news soon too! X

DrARDS profile image
DrARDS in reply to Heartgal151

Yeh I appreciate that, but take that as a small victory and long may it continue. Yeh they won’t rush to say everything is fine and it’s a long journey still.

Anyways, I hope and pray for some good news soon too. Thank you for your wishes and updating us with some positive vibes. God bless us all 🙏🏽

Heartgal151 profile image
Heartgal151 in reply to DrARDS

The doctor has phoned, much happier with him and taking dialysis off in 24 hours. If he can maintain at this level for next few days they will estimate him! I can’t allow myself to believe it until it happens! X

Heartgal151 profile image
Heartgal151 in reply to Heartgal151

That meant to say extubate!!

NICOLETTE2020 profile image
NICOLETTE2020 in reply to Heartgal151

That's great news!

Twacked profile image
Twacked

I personally didn’t start walking for weeks have been out for 2 years I still see steady improvement in cognitive function and motor skills be positive any improvement is good at this point!

Ache-Witmer profile image
Ache-Witmer

Hello, hang in there Heartgal151! My brother was on ECMO for 21 days and was completely unresponsive for over a week. He scored a 4 on the Glasgow coma scale and we were told they would give him one more week before we would have to make some hard decisions. One night he was able to just barely wiggle a toe on command. Little by little he woke up. It was a long an arduous process but he recovered. Do NOT lose hope! Prayers going out to you and your family!!!

Marcita profile image
Marcita

They removed my mom's sedation a week ago and still she hasn't woken up. For 2 days she was like plain unresponsive. And then for 2 days she was like barely opening the eyes. And then for the last 2 days she has opened her eyes and keep it like that for long periods of time.

No communication so far. She also make dialysis every other day. We are guessing her body is having a hard time to clean itself from all the medication.

I'm worried. Today is day 23th since she was intubated because of Corona. We just need her to wake up fully 😔

Rgsable profile image
Rgsable

Hello Heartgal

How are you and how is your dad doing?

Heartgal151 profile image
Heartgal151 in reply to Rgsable

My dad is awake and off the ventilator!! It’s honestly a miracle. How are you getting on? Xx

Hvf2387 profile image
Hvf2387 in reply to Heartgal151

Hi

How long did it take your dad to come of sedation?

co_skier profile image
co_skier

Similar situation - my mom has been in the hospital on a ventilator for almost 4 weeks now (trached at week 3) and still hasn't woken up enough to follow commands. She is finally covid negative, lungs have recovered, all other organs have been fine the entire time. Vent settings are at their lowest at 40% and 5 PEEP and have been there for over a week. Recent MRI came back normal as well as lumbar puncture. We believe it is likely due to sedatives which they can't fully wean her off without getting really agitated. They're trying to figure out what to do next, but it is helpful to know that many others took days or weeks to come around after heavy sedation.

Marcita profile image
Marcita in reply to co_skier

How is your mom?

Lf91 profile image
Lf91

Hi my father in law is in icu with covid 19. This is his 30th day in an induced coma. We thought we was going to lose him over the weekend as his trach had started bleeding into his lungs. Thankfully they have stopped the bleed. Everytime they try and wake him from sedation all his SAT's go all over and they end up heavily sedating him again, is this a common thing? Previous to today's attempt at waking him he's opened his eyes on 2 different occasions before being sedated again. I'm so scared, this is a living nightmare. I'm glad to hear the positive news on this thread, just praying we will get the same news real soon. He is also on dialysis as his kidneys are badly damaged now too. It seems to be 1 step forward and 3 massive knocks back 😢

Hvf2387 profile image
Hvf2387 in reply to Lf91

Hi how’s your mum? Did they manage to get her of sedation

Lf91 profile image
Lf91 in reply to Hvf2387

Hi, it's my father in law. He has been slowly coming out of sedation yesterday and today. He has been responding to the nurses by squeezing their hands when they've been asking him where his pain is (they said arms legs etc and he squeezed) and he has been looking at his dialysis machine as if to tell the nurses that it has finished. They've sedated him a little bit more though as he's tired but not sleeping. Thanks for asking

Hvf2387 profile image
Hvf2387 in reply to Lf91

I have a family member in the same situation. If you don’t mind me asking when they have been trying to get your father in law of sedation what have been the reasons to put him back on again.

Lf91 profile image
Lf91 in reply to Hvf2387

Mainly agitation. His heart rate and blood pressure would go up, his oxygen levels drop and he'd rely on the vent more. It took him along time to stabilise. Overall it has taken about 2 weeks for him to come out without having to be sedated again due to agitation.

I hope you're family member pulls through soon. Its a horrible long process x

Hvf2387 profile image
Hvf2387 in reply to Lf91

Thank you for replying. Yes that the same as my family member agitated and low blue pressure. They have only been trying for a few days so this gives me hope that they can get him of sedation. I hope your father in law makes a full recovery. X

Lf91 profile image
Lf91 in reply to Hvf2387

I honestly felt like it would never happen, constant set backs all the time but things are finally looking up. Just bear with it, it seems as though it will be a long road to recovery but 100% worth it to have your loved one safe and well x

avnipiro profile image
avnipiro

Be positive, but having read a few articles it can some times take paitents awhile to wake due to the kidneys and liver.

avnipiro profile image
avnipiro

How is your dad?

Rgsable profile image
Rgsable

Hi Heartgal

How are you and how is your dad doing?

Heartgal151 profile image
Heartgal151

Hey!

He is so much better. Very weak but working with physio. I took him up some soup to eat and the hospital let me in for 5 minutes, fully suited up but oh my it was amazing to see and hug him! Physio took him outside today for a walk so I drove down and seen him again (he can’t walk he was in wheelchair). Very long road ahead of getting his strength back but mentally he is all there, just needs to build up his muscles and get lots of sleep and food!

How is your husband now? X

Rgsable profile image
Rgsable in reply to Heartgal151

I am so glad to hear that😄My husband is making slight progress. He has 2 infections and the antibiotic is resistant. It is so good to see your dad eating. He will be strong again soon x

Lf91 profile image
Lf91 in reply to Heartgal151

So so happy to see this post, what an amazing job they're all doing xx

Bexx029 profile image
Bexx029

Hi just wanted to post and thank you for sharing all your stories.

My mum Sarah is on day 43 of covid and day 32 in hospital (2 weeks in HDU on CPAP and then moved to ICU and then ventilated on 27th April. They extubated her on Thursday 14th May and shes none responsive now 2 days later.

Whilst reducing sedation before extubation she was opening her eyes and moving around and even seemed to wave when we did a FaceTime call. She was obeying commands enough to extubate. She seemed to progress a little slowly to following some commands and opening her eyes but she seems to have stopped this now (although she apparently tried to verbalise something this morning)

I was really worried as they hadn’t told us to expect this and the doctors are talking about brain scans in a few days. I was wondering if this meant my mum could be brain damaged and I guess we don’t know that answer yet.

When ventilated she developed kidney injury but didn’t need dialysis. She had some swelling to her brain as presumably a response to some strong steroids for her lungs. Her lungs have improved now and she has overcome a bacterial infection, covid, another unknown infection, brain swelling (no follow up but was suggested it was PRES syndrome which would resolve) and was identified with a sudden high blood pressure and some short seizures which the second had to be controlled with medication and she’s now on anti epileptic medication.

I am hoping for a positive outcome for my mum, she has come so far. The doctors are so vague and struggling with communication with them and to be able to speak to my mum on the phone so she can hear our voices. Everything online says to be by their bedside to cope; obviously covid doesn’t allow.

Anjla profile image
Anjla in reply to Bexx029

Hi Bexx.How is your mums recovery?

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