Not waking from covid induced coma

[Miltch]

Hi, my dad is in icu from covid, he is not waking from the induced coma, it has now been 16 days with no sedation, he opens his eyes, moves his head a bit, but doesn’t follow commands, he has been on a ventilator for 8 weeks. He has a trachi, his lungs have scar damage but oxygen on the ventilator is 35 and they’re slowly reducing the ventilator which he’s coping well with. No other organ problems, although his carbon dioxide output is high. He had an MRI brain scan and it showed Encephalitis had been present with no seizures, and the swelling has now gone, but it’s the damage it’s left. The doctors are concerned he’s not waking up, it may just be he needs more time or it could be from the Encephalitis.

Have you had other similar stories, I am completely petrified!

[Rhyl1 Partner Moderator ICUsteps]

It’s difficult to know how quickly your dad’s condition will change. My brother had encephalitis and it took him some weeks to wake up properly. There’s a really good information booklet about recovery from encephalitis at encephalitis.info/Handlers/....

[Miltch in reply to Rhyl1]

Thank you for replying, the leaflet is hard to read, we’re just praying when he wakes the damage isn’t too bad, but we won’t know until he’s awake. How is your brother doing and was his due to covid?

[Rhyl1 Partner Moderator ICUsteps in reply to Miltch]

He recovered well but was left with occasional fits. It wasn’t covid but another virus

[Miltch in reply to Rhyl1]

Hi, were the fits due to encephalitis? i hope he is recovering well.

[Rhyl1 Partner Moderator ICUsteps in reply to Miltch]

The doctors think they are due to the encephalitis but otherwise he is doing great

[Sepsur]

Lots of people are taking much longer to wake after Covid too. No one is certain if it’s attributed directly to the disease or the treatment of conditions.

[Miltch in reply to Sepsur]

Thank you for replying, I know lots of people are, but the doctors are very doom and gloom and it’s so hard with each day that goes by and he’s not waking up. The extent to which covid patients go through is unimaginable and their bodies are taking so long to respond.

[Sepsur in reply to Miltch]

A very painful wait for everyone made worse because you can’t be there to support him. I hope he responds more positively soon.

[Miltch in reply to Sepsur]

Thank you.

[Froggy4711]

Hi I've a family member in the same position. She's about 6 weeks ventilated. 2 weeks since her tracheostomy. She's off sedation 10 days now and like your dad she's opening her eyes and not focusing. Her ct scan came back clear and her kidneys are fine. Like you also the doctors and nurses wouldn't over fill you with confidence but from what I've read it takes time for them to wake after covid. I'm no doctor but I think maybe it's better they wake up slow rather that getting agitated and end up sedated again. Hope all goes well with your dad.

[Miltch in reply to Froggy4711]

Thanks for your message, unfortunately for us my dads ct scan showed some damage and the doctors said it shouldn’t stop him from waking but might be the reason why.I wish there was something they could do to wake them up, with every day that passes it’s so hard to deal with.

The doctors say they should be awake by now but then they say with covid no two people are the same, so it’s very contradicting.

Just stay positive and think there’s so many people who have said the same thing.

That’s all we can do.

[Froggy4711 in reply to Miltch]

Thanks mitch. Got a bit of good news today as she woke and wiggled her toes and squeezed there hand. This just happened all of a sudden so don't give up hope. The nurses yesterday said she didn't wake all day and today she's doing this. It takes time and to be fair even the doctors don't really know what will happen. I might have mentioned 2 weeks ago they wanted to give up and I refused. Now we are here. Not out the woods but certainly improved

[Miltch in reply to Froggy4711]

That’s great news, so happy for you all. My dads eyes are now dilating but he’s not responding to commands and is very weak.

The nurse said he’s opening his eyes a lot, we’re just waiting for more response.

Such a painful and anxious wait!

[Froggy4711 in reply to Miltch]

Ya mitch she was like that for 4 days b4 she woke and then all of a sudden she woke and started moving. Hold tough it will come right💪🙏

[Nicholanick]

Hello, my Dad is in a similar situation. It took him 18 days to start waking up after sedation removed but he has finally started responding to commands. At first, he was just opening his eyes and that was it, and then he started nodding his head and responding to some commands but not all. He is still very weak and has a long way to go and I think the general weakness can count for a lot. I hope your Dad starts to improve soon. Sending strength.

[Miltch in reply to Nicholanick]

That’s great your dad is now responding, we just wish we’d receive that news! Have never prayed so much.

I hope your dad gets stronger each day.

[lynnmarr]

Hang in there. My husband was the same way. Took 31 days for him to become fully awake! We were worried just like you! We prayed night and day!

[Miltch in reply to lynnmarr]

Hi, thank you for your message, it’s comforting to hear others are in the same situation, so pleased to hear your husband did eventually wake up.Hope he’s recovering well.

[Miltch in reply to lynnmarr]

Was your husband completely unresponsive for 31 days?

[lynnmarr in reply to Miltch]

Hi Miltch

Pretty much! He opened his eyes and then did not shut them. Terrified us, then he began to move his shoulder. It is scary, but we kept on praying! He tells me now he heard us, so don't stop encouraging him!

[Miltch in reply to lynnmarr]

Thank you for getting back to me, my dad is opening his eyes a lot, moving his head, Puckering his lips, and when we zoom him, he seems like he’s really trying to respond and he looks at the iPad.However he’s not squeezing the doctors hand and his eyes are not focused.

We’re now on day 22, it’s such a scary time, but we feel as a family he’s making improvements, even though the doctors are concerned.

He’s still on the ventilator and strong antibiotics and that can add to the tiredness.

[Nicholanick in reply to lynnmarr]

Whilst my dad is responding, he is very confused. We don’t really think he knows who we are when we have been allowed to FaceTime on a couple of occasions. We say things to him and his response is to pull a face like he’s confused and doesn’t understand. Not sure if this is normal. He hasn’t smiled at us or shown any emotion whatsoever. It’s like looking at a stranger and it’s like he’s looking at us as strangers. It’s very upsetting. He has only been awake(ish) for a few days after 6 weeks of being either sedated or coming out of sedation so we aren’t sure what to expect.

[Miltch in reply to Nicholanick]

Oh that’s upsetting to hear, I hope he starts to settle down and not be so confused.Has he got any other health issues or is it just the lungs?

The doctor said the ventilator can make them confused if they’re still receiving support.

[Nicholanick in reply to Miltch]

He doesn’t have any other health issues. He’s only 63 and it’s the effects of covid that have caused him to be ventilated. I hope your Dad starts to improve too. What hospital is he in? We are in Stockport just south of Manchester.

[Miltch in reply to Nicholanick]

Thank you, my dad is in the London hospital, he’s 72 but a fit and healthy 72 year old. Plays tennis 4 times a week, works every day, doesn’t drink or smoke and is an active healthy man.

It’s so horrendous and tragic what people are going through and how everyone’s suffering.

[Ferham in reply to Nicholanick]

Hi, This is normal, after being sedated for so long, you just think haven't they been through enough. I was so upset when my husband just stared through me and didn't understand very much at all.

My husband suffered with delirium for several weeks , but the first week or so when he was coming round was painful, but please hang in there , it does get better once the meds have worn off completely .

[Nicholanick in reply to Ferham]

Thank you. It’s such a worrying time. We don’t know if he has delirium as he is responding to commands and remains calm for the entire time. I dread to think what is going on in his head though. It really is one battle after the next in ICU. Is your husband home now?

[Miltch in reply to Nicholanick]

I know it’s hard, but it’s better he’s calm than anxious and agitated.

[Nicholanick in reply to Miltch]

Yes absolutely. Fingers crossed for you and your Dad x

[Miltch in reply to Nicholanick]

Thank you, and to you too.

[Ferham in reply to Nicholanick]

Hi, yes it's such a worry for you and your family, but if you can take some comfort from this, my husband doesn't recall any of it . All you can do is support him. My husband only showed signs of delirium when he started to come round a little more, hardly surprising when they have been heavily sedated . Yes he is home now , he was admitted in the 1st wave .

[Nicholanick in reply to Ferham]

I know. Hopefully we will start to see improvements in the near future. How long was your husband ventilated for and in hospital for? We are expecting a very long recovery, all being well and he doesn’t get any further chest infections.

[Ferham in reply to Nicholanick]

Hi he was on a HDU ward for about 4 days then in ITU on a vent for nearly 6 weeks , after ITU, he was on a step down for 3 weeks, then moved into a rehab home for 3 further weeks .It is a long road, but we are one of the lucky ones , we know that . Infections sadly are par of the course in ITU. I hope you have had better news today .

[Summerhope in reply to Ferham]

Hi. I was just wondering if your husbands delerium has improved or gone now? My mums has been off the ventilator for 9 days now ater being on it for 2 weeks after picking up hospital acquired pneumonia after beating covid without itu. She has been stepped down to a respiratory ward now where she was previously when recovering from covid. She has made good progress physically though very weak and in bed all day and still on nil by mouth. Her speech is understandable now and o think she will be trialling purees soon. For me the main concern now is the delerium...its so upsetting and I know its common but it feels like I'll never get my mum back. Apparently today she was asking the nurse for her brother who died 2 years ago. 😔

I think its going to be a very long recovery. She usually lives alone and cant afford to pay her rent at the moment so I know I'm going to need to help sort out alot of financial matters for her as while she has this delerium she cannot make any decisions for herself...I also have no power of attorney.

And ofcourse the extend of the damage to her lungs is another unknown. I imagine if she makes it through the hospital without picking up another infection then she would probably need to go to some kind of rehabilitation centre afterwards as I cant imagine her being at home alone and I dont live nearby or have a spare room, plus I also have a 4 year old at school coming home with all kinds of viruses and bugs which would be a risk for her. I'm feeling pretty lost and overwhelmed and worried about her future right now.

How is your husband now? Hope things are a bit better. X

[Ferham in reply to Summerhope]

HI Summerhope

Gosh what a worry for you with her rent and lack of power of attorney . When my husband had delirium it took about just over 2 weeks for it to start to clear, We were devastated - the nurses kept telling me ,you will get him back . We did.

They also told me to make a note of some of the bizarre things he was saying, they told me I would look back at the Covid Comedies" . I wished I had as now we tell him some of the things he was saying , some funny and some quite cruel and nasty.

Once he was medically fit he was moved into a rehab centre, they are keen to get them out of hospital as they are prone to infections , he has several legacies from ITU and covid which he is still getting care for .

What is for mums mobility like ? Are you based in the UK , if so your mum should get some financial support for her rent surely ? x

[Miltch in reply to Nicholanick]

How’s your dad doing?

[Nicholanick]

Hi Miltch, he’s doing okay thank you. He had his trache removed on Thursday and has been managing well. He is much more lucid now. He can talk and hold limited conversation although is still quite confused. it’s taken about 3-4 weeks of no sedation for him to get to this point. How is your Dad?

[Miltch in reply to Nicholanick]

That’s great news, so happy for you.

I visited dad yesterday for a compassionate visit, he’s just started to be more aware of his surroundings, they fitted a voice box on his trachi and he’s saying yes and no and smiled when I looked him in the eyes. Was such an emotional time.

He still has a long way to go as he’s very weak and can’t support his body.

He’s now on 16 hours a day with no ventilation, so he’s slowly coming off the ventilator.

It’s a very long road to recovery!

The doctor said it’s like teaching a child to ride a bike taking the stabilisers off, is how it is for the patients to learn to breathe again.

[Nicholanick in reply to Miltch]

That’s fantastic news. Although it must have been very hard for you to see your Dad all wired up. ICU is so stark as well, there is no difference between night and day. It’s called intensive for a reason. I’m sure the tracheostomy will be removed soon. At the point of my dad doing 16 hrs a day, he went to 24 hrs the day after, had 2 days on that and then they took it out. Painless and relatively simple procedure. He has no use of his body. His arms and legs don’t move. He can just about move his hands and that’s it. Its going to be a very long road but a road we never thought we would be on.

I hope your Dad continues to improve and makes those all important baby steps each day.

[Miltch in reply to Nicholanick]

Oh that’s good to hear, yes icu is very daunting, I have seen him before so yesterday wasn’t as hard a the first time, the ward was nearly empty, only my dad and 2 other people, thankfully cases are dropping in icu.

I think their bodies take longer to recover as they haven’t used their muscles for weeks, the physio sat my dad on the end of the bed, then told us he couldn’t support himself.

I didn’t for one minute think he could, he’s been asleep for 9 weeks.

Wishing your dad a good steady recovery, please keep me updated, it seems our dads are on a similar journey!

Sending positive thoughts and prayers.

[Nicholanick in reply to Miltch]

Yes, I thought that when they sat my dad at the end of the bed! He couldn’t support himself so why do it? I’m sure there’s logic. I can’t believe how globally weak he is. They never told us this when he went on a ventilator and I suppose they just want the patient to survive rather than talking about the potential aftermath. Did you request a compassionate visit? Was it something they resisted at all?

My mum has been allowed in once when he was very delirious and the family were only allowed in when we were told he wasn’t going to last the night.

Hoping and praying your Dad continues to make those baby step improvements.

[Miltch in reply to Nicholanick]

Yes we kept asking for a compassionate visit as my dad has been in hospital since January.

Some hospitals allow it, others don’t.

It seems now it’s quieter and he’s testing negative to the virus, they aren’t so strict with the rules.

Keep asking every time you speak to them, that’s what we do.

Hoping your dad improves too.

[Nicholanick in reply to Miltch]

Thank you for that. We will keep asking. I think it will help him if we visit. ICU is now at 50% capacity so it’s much quieter than it was.

[Miltch in reply to Nicholanick]

I took nail clippers and a file to do my dads nails as they were really long.

We were told the hospital doesn’t have that service anymore.

Just thought I’d let you know.