Not speaking after coming out of sedation.

[Chanlib]

Hey all,

I have written here quite a lot and I know a lot of you are following my dads COVID journey.

After 21 days coming off sedation my dad is awake (understanding commands, squeezing hands, tracking people). He is off the ventilator, still in ICU. He has a trach and they are in the process of removing it, hopefully this week. However, they have said today that he still isn’t talking. The doctors are unsure whether it’s because they don’t understand him with all the PPE etc. or whether it’s something to do with the brain.

Has anyone had any experience with not talking after coming out of sedation? They were unable to do a MRI for other reasons, but I’m worried that there might be something neurologically wrong.

We’ve been going through ups and downs for 7 weeks now, would have thought these hurdles would become easier to handle! Any advice is really appreciated! X

[Sepsur]

I couldn’t talk with trachy!? Do you mean he is not even mouthing words. I didn’t have the strength of breath to form words - when they turned down the cuff - I could whisper after 10-11 days after properly coming to - I was then only allowed to speak for about 10minuted because speaking would leave me exhausted and gasping for breath.

[Chanlib in reply to Sepsur]

Oh really! That’s so good to know. I don’t think he’s mouthing words - the dr didn’t say that. Just they are concerned as he is not talking. Sorry what’s the cuff?

Maybe I can ask tomorrow if it could be the case of not having strength to talk.

[Sepsur in reply to Chanlib]

It changed the pressure in my vocal chords & enabled me to speak (albeit quietly).

Later they put a passy muir valve in my neck which also increases the volume of voice - very strange experience to speak and your voice comes out of your throat below your chin 😀& I kept on thinking they were going on about ballroom dancing with a paso doble 😳

[Sepsur]

This is what a passy muir valve does

passy-muir.com/valves_page/

[JustJessy]

My grandmother has been off sedation for 8 days now but she’s still not “awake”. She’s breathing on her own for the most part. But they can’t remove the vent until she wakes up. She grimaces when they suction her and squeezes her eyes shut when they try to open them. But does not respond to anything else. They will be ordering brain scans soon. I don’t think these doctors yet understand how this disease affect the brain.

[Sepsur in reply to JustJessy]

Suctioning your lungs is the most disgusting procedure - I dreaded it

[Chanlib in reply to JustJessy]

It took my dad 21 days to ‘wake’ up and even now he’s not talking (24 days). Being off the ventilator and a round of dialysis to flush out toxins worked for him.

It’s the hardest part being in this limbo...just remember everyone heals differently. There is no set timeline for recovery.

[JustJessy in reply to Chanlib]

She opened her eyes last night!

[Chanlib in reply to JustJessy]

Amazing news!

[Dabofoppo]

When I woke up I struggled to speak once i realised no one could understand me I kind of stopped trying and had to be prompted a lot.

[Chanlib in reply to Dabofoppo]

Oh really - but we’re you showing signs of talking (moving your mouth). How long was it until you fully started speaking and responding to the dr?

[Dabofoppo in reply to Chanlib]

I did at first but then stopped it can be really disheartening.

[JustJessy in reply to Dabofoppo]

What was your mental state? We’re you angry, confused? Did you know what happened to you?

[Dabofoppo in reply to JustJessy]

I went through all of those at first I was really confused had no idea where I was in fact I thought I was in Canada at one point. After that I became delirious and really angry. I didnt know what had happened to me until about 3 weeks had passed and I was only out for 5 days. People kept telling me but i wasnt able to process the information.

[Sepsur]

Any progress today?

[Chanlib in reply to Sepsur]

The OT told us he is saying his name which we are all excited about. He’s also told us to send in pictures for them to test him. We’re going to zoom tomorrow with the OT as he wants to observe him. Praying he talks back to us!

Thank you for checking in!

[Sepsur in reply to Chanlib]

He’ll have probably lost a lot of weight - be prepared

[Marcita in reply to Chanlib]

Quick update mom said "yes" and "no" yesterday. Waiting for a spot at the crowded ward so they can move her out of the ICU again. She can nod her head and kidneys looking good after she was hydrated.

Looks like our parents are following the same pattern. Also they are watching her carefully because she got some skin ulcer due to laying down on the bed for too long. So our biggest issue now is treat her skin wounds so it doesn't develop into a infection.

[Sepsur in reply to Marcita]

Great news & 😱 - bed sores are really uncomfortable / I had one forming on my heel - thankfully the staff got to it in time - as you say - last thing you want is another infection

[Marcita in reply to Sepsur]

Yeah that's my biggest anxiety right now. Hopefully she can be out of the ICU soon because the environment is very prone to infections! But they have the plastic surgery team following up with her so praying they'll be treating that without further issues.

[Sepsur in reply to Marcita]

I’m sorry to say that a state of anxiety is the new norm - look after yourself too 😊

[Chanlib in reply to Marcita]

Great to hear the progress!!! Oh wow - I didn’t even think of bed sores etc but good thing they have spotted it and hopefully can treat it quickly.

My dads latest spanner in the works is he can’t be discharged from ICU as yet even though he is making great progress...after 7.5 weeks he is still testing positive for covid! 😓

[Sepsur in reply to Chanlib]

😱

[Sepsur in reply to Chanlib]

They will drop him down to an HDU version of ICU - ( I didn’t actually move anywhere) where you have 1 nurse for 2 patients - in all honesty - it’s not such a bad thing - whilst moving to the wards is great for a sense of progress - for me it was a real shock. ICU is pretty comfortable in many ways.

I kept on picking up infections so every time I was about to drop down, it didn’t happen. The other advantage was that by the time I left ICU, I had no catheters & very few lines in.

[Chanlib in reply to Sepsur]

They did say he would go to HDU only when he tests negative as they don’t have a specialist covid area in HDU only ICU.

Thank you for letting me know you found it comfortable, I do hope my dad is feeling the same! Even though he’s been there for 7 weeks, he’s only been fully aware that he’s there this last week 😞

[Sepsur in reply to Chanlib]

Yes - I woke up week 8 - so I know the feeling. He will have lost a hell of a lot of weight - which is normal. He may struggle remembering words & names and seem confused / it’s all normal for critical care 😊

[Chanlib in reply to Sepsur]

Thank you so much - really comforting to know! Will let you know how we get on after the zoom.

[Sepsur in reply to Chanlib]

Have a read of delirium pdf - ( a lot of people get this short term) - if I’ve sent it before - sorry

icustepschester.org/informa...

[Marcita in reply to Chanlib]

I remember reading you can only transmit covid after a certain amount of time? 🤔

I mean they usually tell people to stay at home for 14 days after the first symptoms.

I would guess 7 weeks in the ICU would be safe enough...

[Chanlib in reply to Marcita]

I guess as it’s a new virus they have no substantial evidence as yet...my dad has been in ICU for 7 weeks, he was ill a week prior, so that’s over 8 weeks that he definitely had Covid.

I had it too - lasting only 2 weeks and my mum tested positive at 6 weeks. They are now also saying not to rule out the possibility of you being immune to it after having it. It’s all just uncertain territory.

We did also say to the dr if there was a chance that the test is not accurate and he said that could be the case too, so they will be doing another one in a week. 😞

[Marcita in reply to Chanlib]

But looks like your hospital is taking very good care of your dad. No one has mentioned retesting my mom and I'm sure they won't because we already have a long waiting list of pending tests in my country😕

[Chanlib]

Honestly, the doctors and staff are amazing at my dads hospital. I am indebt to them!

[Sarhj in reply to Chanlib]

It’s so wonderful to know that your dad is doing much better 🙏 my family is in the exact same situation with my dad 😢 It’s been 9 days now since they started weaning him off the ventilator to get him to wake up and we’re still waiting 😞 I’ve read your posts and you really give us hope!! I’ve noticed your last update was your dad still couldn’t speak 12 days ago, how is he doing now?

[Marcita in reply to Sarhj]

My mom took almost 3 weeks to fully wake up and have conscious. And many many days to start speaking. It's day 49 for us and she's speaking very well. I mean in a very low tone but she does. She's tired so she doesn't speak long sentences.

[Sarhj in reply to Marcita]

That’s great! Best of luck to her and your family 🙏🙏🙏 did she end up needing a trach? Or did she eventually wake up from the ventilator?

[Marcita in reply to Sarhj]

She spent 25 days on the ventilator.

They removed her sedation on day 15th but she wasn't waking up. At one point they simply decided she was good enough to be extubated and they did even though she was not fully awake. She did very well. No tracheotomy needed.

Day 15 stopped sedation

Day 25 extubated

Day 38 spoke yes and no

[Sarhj in reply to Marcita]

That’s wonderful!

[Chanlib in reply to Sarhj]

So glad our case gives you hope. He was taken off sedation on April 10th and only around April 30 started opening his eyes and responding to commands. It’s literally been these last 10 days/ week he’s been fully speaking. He even had his trach out yesterday. All we could do was wait - but each day he showed us small small progress. Have they offered to give your dad MRI? My dad couldn’t have one so that was even more agonising...x

[Sarhj in reply to Chanlib]

So wonderful and comforting to know 🙏 we are currently in the process of possibly doing a trach sometime soon. They did get an MRI and thankfully results were normal. I can only imagine what it’s like not being able to get it done 😞 hopefully things only get better from here for all of us 🙏 will keep you posted. I appreciate your Updates!

[Bexx029]

Thanks for your post. My mum has been awake and extubated for 5.5 days now but is yet to have any form of concious. She doesn’t speak, doesn’t know who we are, doesn’t follow commands and is just either being restless/playing with tubes/looking around confused or sleeping.

The wait is agonising. They are taking her for a CT scan today but can’t do an MRI because there’s no access for covid patients unless it’s 100% necessary.