Not Waking Up after 14 days sedation

[pjmj]

My husband is 72. In Cardiac ICU - they stabilized his heart rhythm - but lungs struggled - they intubated him and been on ventilator for 22 days now.

HE WAS SEDATED for 14 days, and once they stopped the sedation, he is opening his eyes and has moved hands and pressed his hands into both sides of the bed in an attempt to move himself away from the pain when nurse was adjusting his tube in his throat. And he yanked his head away from nurse while she was cleaning his teeth and mouth.

But hospital is saying his mental capacity isn't showing signs of improvement. Yet they want to remove the ventilator and put in a trachea. He started moving on DAY 3 - then they took him on DAY 4 to have a Catheter put in his side to remove/drain a huge amount of infectious fluid that they didn't find for the first 2 weeks while in sedation.

I'm at my wits end - many say 5 days is not enough time to allow for him to heal to wake up more. ANYONE HAVE ANY SIMILAR SYMPTOMS ?

[emkev87]

Have they stopped all sedation? My husband (50) was on a ventilator for 6 weeks and even when they lowered the sedation, mentally he was still struggling, hallucinations, trying to pull all the tubes out, hitting people, they had to put padded "boxing gloves" on him. Some days they'd put the sedation back up because he was too much to handle. We never knew how'd he'd behave whenever we went in but eventually he was calmer and they put in a tracky to assist his breathing whilst they weaned him off the rest of the sedation. I know it's not easy but I tried to see the tracky as a positive step. It was the start of him getting better. He was able to speak, tell us things instead of struggling with the ventilator tubes in unable to speak.

[pjmj in reply to emkev87]

Yes they stopped the sedation and He started moving on DAY 3 - then they took him on DAY 4 to have a Catheter put in his side to remove/drain a huge amount of infectious fluid that they didn't find for the first 2 weeks while in sedation. So they had to give him light local anesthesia to do that procedure. And then we were back to square one waiting for him to move and wake up. He finally started moving three days later. And they planned to remove the tube in his throat and insert the Trachea - Scheduled for tomorrow Jan 7th.

[FamilyHistorian]

my circumstances are / were very similar. I shall be 77 in March. Back in Nov / Dec ‘19. I was admitted to our local hospital with pneumonia, sepsis & heart failure. My aortic valve was rapidly failing. I was transferred to to a trauma hospital where on 19Dec I was placed in a coma. I was too ill to be operated on but in the end they took the risk and I had open heart surgery. I wasn’t tolerating the breathing tube so it was decided to give me a tracky this was done just after Christmas. I remained in the coma for nearly 2 months, my family were called in twice because I wasn’t going to make it. I had tubes in everywhere with 3 drains in my lungs.

I should have come round fairly quickly, attempts were made to reduce the drugs but in the end the family were told they needed to patient. I did come round for short periods but I can’t remember any of this. Patients in a coma may hallucinate I did. They are frightening and very real. And I mean real. I thought I was in a motor museum and even when I came round and should have realised where I was but I couldn’t be persuaded other than what knew was my reality.

Once I came round I couldn’t speak because of the trachy but a voice box was fitted. Before stepping down to the cardiac ward it was removed and the wound took about 3 weeks to heal.

Your husband is likely to loose weight- this is not only fat but also muscle so will be very weak.

I do have some advice

Critical Care Support Network as well as supporting patients supports family and relatives through a zoom drop in on Tuesday evenings at 8pm. See their website for further info and other useful info.

Also it’s really important that you look after yourself both now and in the future.

[Sepsur]

removing sedation/intubation and inserting a trachy was a positive step forward in my case. It was part of the waking process - a trachy still enables oxygen to be administered if required. I had CPAP, PEEP & nebulisers with a trachy.

It still took me 11 days to come around after sedation was removed. I hadn’t had a heart attack but my heart had failed and I was ‘restarted’ a couple of times. My respiratory system had failed and everyone feared a hypoxic injury. MRI/ct scan didn’t seem to show significant damage.

I do have some cognitive dysfunction after ICU - so of that is as a result of experiencing ICU delirium - it would appear that the delirium can cause what looks like a traumatic brain injury.

[pjmj in reply to Sepsur]

Thank you so much for responding. This is frustrating and frightening. Were you able to talk with the trachea in place - and when it was removed.

[Sepsur in reply to pjmj]

Not at first, I could mouth words - then they fitted a speaking valve called a passy muir - although my voice had no power at first, atleast I could speak. I was given short windows of opportunity to speak - it was immensely tiring.

I think I had it for about 2 weeks - the passage of time is very difficult to gauge in ICU. It took a couple of weeks for the wound to heal over.

[Ckbrowder in reply to Sepsur]

Yes, the speaking valve was such a blessing when they gave my husband one also.

[pjmj in reply to Sepsur]

Thank you - Any info on this is much appreciated.

[Ckbrowder]

hi! My husband was on a ventilator for 59 days. He didn’t wake up for 11 and they thought he was not going to have any mental capacity but he had critical illness myopathy (basically the neuron transmissions weren’t making it down to his hands, feet, etc. he had to work hard in physical therapy but within 2 months, was walking again. He is normal completely now with no impairments. Sitting right next to me watching television. Make sure to give him plenty of time. I’d do the tracheostomy with a trache collar to allow him mobility with no more sedation but allows him to breathe. This is what they did for my husband and his tracheostomy was removed about a month later. Hope this helps. Fight for him! I did and it works!!! Best wishes to you!

[pjmj in reply to Ckbrowder]

Bless your heart - thank you so much for sharing this!

[trauma_alchemist]

I am so sorry you and your husband have to start the new year this way.

It is very common with heart failure to have fluid issues and accumulate lung effusions that need to be drained - they can pop up very fast, like overnight.

Even a healthy young person can take days to first wake up, and then to respond appropriately after 14 days' sedation in an ICU stay. It's very, very common. The trach although scary, is a great step to get out of the ICU. It is much more comfortable for patients and makes breathing easier than the mouth tube, so it allows the team to avoid sedation and reduces ventilator needs a little bit. People cannot talk at first, because the air comes out the trach tube instead of up through the vocal cords. But once people are stronger and breathing on their own off the ventilator, the speaking valve can be tried for a little time each day. The chest and throat muscles needed to speak, breathe, and swallow need rebuilding like alll the other muscles after a long period of immobility. Try to give it time. Nobody expects him to be "healed" at this stage - the trach is a way to improve his comfort while he recovers.

All the best to you both.

[pjmj in reply to trauma_alchemist]

Thank you so much for this message. He's been through so much in 26 days (Dec 12/2024 to Jan 6/2025). And he will not be leaving any time soon. He's moving More - hands, feet, head side to side - tongue (around the tube) - eyes are starting to move side to side, but still will not follow our finger. They are planning to put in the Trachea tomorrow (Jan 7th) with the Hope he'll wake up much more to a lucid state and progress from there. This is the hardest time of our lives - to endure your loved one in such a vulnerable and torturous state is unbearable.