Waking up from deep sedatives in ICU.: Waking up... - ICUsteps

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Waking up from deep sedatives in ICU.

Eclips2luv profile image
34 Replies

Waking up from sedation...what should I expect? My Dad went in for bypass surgery which went fine and on the day he was to come home he had a reaction to Heparin which was HIT type II rare response. They found clots in his heart and he had a heart attack shortly after in the ICU. He went in for emergency surgery to have the clots removed that had blocked his heart. It was successful but in the midst of all this trauma, he was placed on dialysis and the ECMO machine to help strengthen his heart. It worked and they were able to remove him from it but kept him on a ventilator. Last Wednesday, all sedatives were removed to wake him and they started to see eyes open, grimacing to pain, and opening mouth. He has not progressed passed these signs so they are performing an EEG today and are talking about a tracheotomy but CT scan was clean. Anyone been through a similar experience? I am hoping he is just having a delay. UPDATE - He is doing great today! They put in the trach and he is responding to commands by moving his arms and legs! He was on ventalation for 2 weeks and off all sedatives for 9 days so far. They did find blood clots in his lungs from the HIT but it is white blood cells that will not travel. Worst case scenario, they will create scar tissue in his lungs and he will be required to be on oxygen for the rest of his life but too early to tell. Last procedure is a feeding tube implant on his stomach to remove the one from his nose. I get to visit him tomorrow.

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Eclips2luv
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34 Replies
Tsuology profile image
Tsuology

Hello Eclips@luv.

I hope that things may have progressed since you last wrote.

My husband is currently in intensive care and experienced something similar when waking from sedation. His sedatives were stopped for 5 days before he started to open his eyes and grimace to pain. We were told that it was due to his brain needing time to recover and the impact of so much sedation and how his body is processing it. Dependent on age and any underlying health conditions, it takes varying amounts of time to wake up (believe me I've done loads of internet surfing).

CT scan can be clear but they might do an MRI which they did for my husband. The tracheostomy just allows your Dad to be intubated without that big tube down his throat--more comfortable for him and less invasive on his throat, it will also help when he is coming off ventilation if he needs to rest from self breathing.

Im no expert but I am seeped in ITU and their information at the moment. Hold on there, waking up is a very individual thing and try to stay positive. Sending virtual hugs

Eclips2luv profile image
Eclips2luv in reply toTsuology

Thanks for your reply! This is all useful and I too am a research nut and have been doing the same. You're correct and he goes for an MRI today. They should be calling me with results this afternoon.

worriedinalabama profile image
worriedinalabama in reply toTsuology

The exact same thing happened to my husband in May. He went in for a triple bypass. A week later as they were trying to wean him from the ventilator, he crashed and they found two large blood clots -- 6 inches long each -- in his lungs. They did not give me much hope for him living through the surgery, and they did not tell me for weeks that it had happened as a result of a very rare reaction to heparin. We are about to start October -- he did eventually get a tracheostomy, which allowed him to wean more easily from the vent, and then he weaned from the trache. The ICU nurses did not take good care of his feet during all of this and his toes turned black. His left foot has amazingly, mostly recovered, but he will probably lose parts of his first three toes on the right foot. It took him a while to really wake well from the sedation after begin sedated for almost six weeks and then it took more time for his blood pressure to stop having extreme lows and highs. We are also dealing with a nonunion of the sternum and a chest incision that is not healing well. It is a long process. It is longer than I ever imagined. My husband came home after 73 days in the hospital, and he is getting stronger every day, but he still is not quite the same person he was -- he is much quieter, and his emotions are much flatter. I hate to sound trite because I have to remind myself every day that it takes time to get over all of this -- your father and my husband had back-to-back open heart surgeries and those will take a while from which to heal. Hang in there.

Eclips2luv profile image
Eclips2luv in reply toworriedinalabama

So happy for you and his recovery. Thanks for reaching out. My father was also in a motorcycle accident 10 years ago where he was on heavy sedatives in ICU for 3 weeks and it took almost a year for him to get back to normal. He also experienced the quietness and being not quite himself for a long time. He made a full recovery and got all his cognitive abilities back after about a year. Hang in there and message me anytime if you need to talk since we are going through the exact same thing.

FamilyHistorian profile image
FamilyHistorian

Hi Eclips2luv

You can see more about me in my profile but it is important to recognise that everyone is different but I had pneumonia and a heart valve replacement and was sedated / ventilated for 6-8 weeks with a trachy it took me a long time to come round properly I just wasn’t ready.

I know from my own relatives experience that this is a traumatic time for you, we patients just haven’t got a clue although hallucinations were bad enough.

There is no other way to say this but the worst is to come but you will be going through it together. So make sure you look after yourself now and later. In my case I wasn’t really aware of what was going on even though my relatives thought I was communicating with them. And then there is the physical and mental recovery.

I have been home since mid March and progressing.

Eclips2luv profile image
Eclips2luv in reply toFamilyHistorian

This is great news and glad you're progressing. He has been through so many obstacles to get here so hope is definitely with him from all my friends and family. Only 1% of people have this immune system reaction so not much is known on how to treat it. I message him on his phone everyday to help cope and hoping one day he will be able to look back and read it.

Sepsur profile image
Sepsur

About 50% of critical care patients suffer icu delirium which is broken into two groups, hyperactive ( where the patient is tearing out lines & trying to run around ward) and hypoactive delirium ( where the individual is almost completely static - but will open eyes, respond to voices & pain etc). Loads of us suffer extreme fatigue, the start of my journey was avian flu & double pneumonia- I contracted it whilst skiing. I carried on skiing despite being extremely ill - I’m trying to illustrate that I am not easily defeated. 2 days later, I am rushed into hospital having already gone into septic shock with multiple organ failure.

I wake up 57 days later & leave hospital after 120 days.

I learnt to sit up unaided, I learned to stand, walk, climb stairs, eat, drink again.

Once I got home, the level of exhaustion I felt, meant getting dressed in the morning would take me back to bed again for a few hours.

I suffered monumental muscle waste & weakness - hence having to learn to do everything again.

My digestive system was messed up, my circulation system was messed up so I frequently felt faint and suffered vasovagals. I had severe cognitive dysfunction - brain fog - so I struggled to remember things, name, words. I forgot how to undertake tasks and found company mentally xhausting.

These are some legacies that you might find your father experiences.

Eclips2luv profile image
Eclips2luv

Wow. You have been through a lot but sounds like you have worked hard to recover. Thanks for your reply. I am absorbing all info I can get so I can stay well informed. It is nice to hear from others who have actually experienced this themselves or through their loved ones. Thanks for sharing.

0608 profile image
0608

My husband who is 32 has now been in icu for 3 months. He had pneumonia was intubated & on ecmo. His lung has recovered but he’s still not fully conscious. (They stopped sedation a week after he was admitted)He is still not responding to basic commands. His mri of the brain is clear but his not got any progress. It’s been so hard for me to watch him in that state. I’m going to visit him today and i just hope for a miracle every time I go see him.

Sepsur profile image
Sepsur in reply to0608

How did you get on?

0608 profile image
0608 in reply toSepsur

I visited him today as well. He didn’t respond to me in any way he was just staring around. They did a second mri and it also came all clear and no signs of brain damage. But he’s still not fully conscious. It’s been 3 months and it’s becoming scary. It’s been the hardest time of my life and I don’t know how to deal with all this stress. I miss him so much everyday it hurts :(

Sepsur profile image
Sepsur in reply to0608

I’m so sorry - so you are still stuck in Turkey?

If you have an internet connection - we run a relatives meeting on zoom where you’d be more than welcome.

Have the staff talked about delirium - I’m no medic, & it does sound like an incredibly long time that he’s remained unresponsive, but it can last a fair time for some & become worse at night. Maybe @Rhyl1 can shed some more light.

Eclips2luv profile image
Eclips2luv in reply to0608

How was your visit?

0608 profile image
0608 in reply toEclips2luv

He didn’t respond to me in any way he was just staring around. They did a second mri and it also came all clear and no signs of brain damage. But he’s still not fully conscious. It’s been 3 months and it’s becoming scary. It’s been the hardest time of my life and I don’t know how to deal with all this stress. I miss him so much everyday it hurts :(

0608 profile image
0608 in reply toEclips2luv

How is your father doing?

Eclips2luv profile image
Eclips2luv in reply to0608

He is responding to commands and getting up on his own. We got a smile out of him one day. Hang in there. How are things going for you lately?

Eclips2luv profile image
Eclips2luv

Sorry you are having to go through this. I hope for a swift recovery for him.

Eclips2luv profile image
Eclips2luv

UPDATE - MRI and EEG came back clear with nothing obvious so they will be giving him a tracheotomy and remove him from the ventilator. He is showing signs of infection but is on antibotics. He is also still grimacing to pain but no eye movement yet but has only been off sedatives 7 days today. Keeping hope that he may wake up soon. I know we have a long road ahead but both his girlfriend and I are ready to take this on.

Nohaelassal profile image
Nohaelassal

I’m going through the same thing exactly . Can i ask you how is ur husband doing?

Eclips2luv profile image
Eclips2luv in reply toNohaelassal

He is doing great today! They put in the trach and he is responding to commands by moving his arms and legs! He was on ventalation for 2 weeks and off all sedatives for 9 days so far. They did find blood clots in his lungs from the HIT but it is white blood cells that will not travel. Worst case scenario, they will create scar tissue in his lungs and he will be required to be on oxygen for the rest of his life but too early to tell. Last procedure is a feeding tube implant on his stomach to remove the one from his nose. I get to visit him tomorrow.

Sepsur profile image
Sepsur in reply toEclips2luv

Great news

Eclips2luv profile image
Eclips2luv

We visited him Saturday and his eyes were fairly open and he turned his head to look at us and tried to move his mouth. The nurse said he responded the most to us so we were thankful to get to see him! They're strict guidelines for not allowing visitors so I was thankful they let us see him. Of course we have a long road ahead of us but it's hopeful at this point. We brought the ICU team goodies to for taking great care of my Dad.

Eclips2luv profile image
Eclips2luv

New update. He is sitting up almost unassisted and sitting in a chair for an hour at a time on his own. Still has 2 blood clots in his lungs and arm has one from the Heparin. Since the trach, he cannot talk at all. The nurse asked him how he felt and was reading his lips and he said like shit. That is a good sign not only is he responding but his personality it there as well. I hope this gives some hope to someone going through this. Once he is off of the ventilator and blood clots reevaluated, he will start rehab.

FamilyHistorian profile image
FamilyHistorian in reply toEclips2luv

Perhaps they will let him try a voice box. I had three different voices but was only allowed to use them for short periods of time. The biggest problem was becoming used to having the box and then loosing your voice whilst it was disconnected. I used to be allowed ice chips (the only oral intake) and I had three exercises to strength my vocal chords. I came out mid March and my voice is virtually normal, I had a distinctive laugh which has gone although I can laugh but I have an irritable intermittent cough

Sepsur profile image
Sepsur in reply toFamilyHistorian

Yes laughter & raucous laughter is now a coughing fit 😳

Sepsur profile image
Sepsur in reply toEclips2luv

In time - I’m sure they will fit a passy muir valve - this will enable him to talk for short periods - when his diaphragm & vocal chords, throat muscles are strong enough

Eclips2luv profile image
Eclips2luv

He is making fast progress. Now standing and walking a bit. They can leave him off the vent for up to 4 hours at a time. They hope to have him off the vent next week and fitted for a valve rather than a trach. Then off to rehad we go the following week if all goes as planned.

Sepsur profile image
Sepsur in reply toEclips2luv

Great

Ferham profile image
Ferham in reply toEclips2luv

Amazing progress - really delighted for you .

FamilyHistorian profile image
FamilyHistorian in reply toEclips2luv

Good news

guriya24 profile image
guriya24

Hello

I hope your dad is recovering well. My dad is in the ICU and is having a hard time with his mental status. He had a heart attack at work (he owns a little shop and is alone most of the time), didn't tell anyone, and didn't go to the hospital. We had to call the ambulance because he wasn't responding well. The heart attack did a lot of damage. He wasn't a candidate for bypass because of his lungs but he was able to get stents. He went into a cardiogenic shock right after getting stents. Kidneys and liver were failing. Lungs filled with fluid. He recovered from all that. Kidneys and liver both look better. Lungs also look better. He has a mitral valve leakage but that is something to fix later. His blood pressure is holding on without pressers. He was off the balloon pump last week. He's been sedated for over 3 weeks. Every time they turn off the sedition, he is agitated. He moves around and starts fighting the machine. He tried to pull the tube out his mouth. He doesn't follow commands. He finally got a trach yesterday because they can't get him to wake up with ventilator in his mouth. Even with the trach his mental status has not changed. If they are unable to in the next 24hours they will have to contact a neurologist. This is so hard on us. I am the only one able to contact the nurses and doctors due to language and distance issues. Everyone looks to me for updates on my dad. I don't know what to expect and I don't know how to explain to my family that this might be a really slow journey without them freaking out that he has brain damage or something. My mom does not trust nurses or drs from her experiences. Trying to keep her calm is even harder because she wants to go fight them. Because of Coivd we can't visit him at all.

I don't know if you will see this since your last post is from 4 months ago. How is your father doing now? How long for him to wake up not confused. 9 days? How long until he started following commands? What are some other challenges your dad faced?

Sepsur profile image
Sepsur in reply toguriya24

There is a lot of information on this page that will help you to disseminate info to the rest of your family - critical care has some general legacies

Delirium- in about 50% patients

ICU acquired weakness

Muscle waste

Fatigue

Neuropathy with some patients

Telagon Effluvium with some too.

icustepschester.org/informa...

guriya24 profile image
guriya24 in reply toSepsur

Thank you that was very helpful

Sepsur profile image
Sepsur in reply toguriya24

You’re welcome

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