Dad off of ventilator : Hey guys. So my dad was... - ICUsteps

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Dad off of ventilator

jld85 profile image
jld85

Hey guys. So my dad was extubated yesterday. He’s on high flow nasal cannula at the moment. All vitals are good. He was taken off of the ventilator the morning of the 10th day. He’s got some confusion and looks so pitiful and is so weak. He’s said a few strange things and of course it’s hard for him to talk. He’s also lost quite a bit of weight. His pulse is a little high and he’s had a low grade temp they’ve been monitoring as well. Has anyone else experienced these same things?

33 Replies

Yes - have a look at ICU delirium

icudelirium.org/patients-an...

jld85 profile image
jld85 in reply to Sepsur

What about the high pulse and low grade fever? Have you heard of this? They don’t seem concerned, but watching. The pulse has been a little over 100. (around 107)

Sepsur profile image
Sepsur in reply to jld85

Yes - when I left ICU my resting heart was 130-50 - normally (now) my heart beats 51-54.

If you imagine the level of muscle we lose - it’s right across the board, the heart is a muscle too and it shrank whilst I was in ICU - some of it was through inactivity & a machine doing the work - “if you don’t use it you lose it”.

The treatments in ICU often leave us immune compromised so we are prone to picking up infection - in ICU I picked up VRE, CMV, VRE, MSSA, EBV, glandular fever & HHV6.

I know this because I was tested for everything infectious disease whilst in A&E - I presented with being extremely ill from an undiagnosed pathogen.

jld85 profile image
jld85 in reply to Sepsur

Oh my goodness! You’ve just been through so much! A walking miracle for sure. Yes, my dad has lost quite a bit of weight and just looks so helpless. It’s just going to take some time I imagine.

Sepsur profile image
Sepsur in reply to jld85

Everyone is different for sure - i was told it could take me 10 days for everyday I was in ICU to recover. I found a useful & fairly accurate scale.

jld85 profile image
jld85 in reply to Sepsur

Ok! Thank you for your reply!

jld85 profile image
jld85 in reply to Sepsur

They actually said this evening he’ll be going to progressive care soon. So he’s basically ready. I guess that’s a good sign.

jld85 profile image
jld85 in reply to Sepsur

Thanks for the article!

Yes, I experienced all of these things while coming down from ICU, through the high dependency unit, and then into a general respiratory ward. Any time I got to 37.5 degrees C in temperature I started to worry, but would be given paracetamol and lots of water and it would come down again. Blood pressure was up and down like a yoyo. I talked strange things all the way into the general ward, and was still confused even in there for the first couple of days.

And lost more than 2 stones in weight across three months.

So everything you describe sounds "normal" for the situation. Glad to hear the good news btw.

Thank you! Ok, makes me feel better than it is a “normal” abnormal. Question to you guys. I know everyone is different but a lot it times with ppl there are averages. How long would it say it took before voice got better? He has such a hard time talking. It’s a strain for him and it’s so weak and he has to almost push it out. He looks so pitiful.

Took me about a week with the SALT language lady visiting me each day to teach me to chew soft food again (they don't want patients to choke on things) and to speak again. There was a slight rasping from my trachy hole for a day or two (with small amounts of air going in) after the tube was removed but then that stopped.

Ok, thanks for the reply. Hearing all of this does help. I’m so glad I found this community! Thanks again to you guys.

He asked my sister if she had any blue meat on her the other day? Then last night he said something about that little boy keeps touching me or something. Saying some weird stuff. Some things he says is fine but others, is not. They said tonight they asked him to sleep with a bpap machine and they asked a few different times. They said he was acting like a child and just telling them no! Does this sound like things that people can do?

We lived in our own reality and nothing anyone else will say will make any difference because our reality is real and you are wrong!

This makes it very difficult for relatives to determine what they are being told is true or not. What the patient says is very believable, sometimes it is obvious that it is fantasy but other times, especially if it relates to being assaulted or not cared for it will sound very believable but probably untrue.

(My trachy took about 3 weeks to heal. It was very tiring to talk especially with all the exercises I had to do to learn to swallow)

So you remember being that way? I know everyone is different, but was it just like a foggy brain? I just try to understand what’s going through his mind and I’m sure it’s hard to even explain.

What type of oxygen were you down to after the vent? I was telling the other guy my dad is on high flow nasal cannula right now. Did you have to use that? Or how did it go for you?

I can remember most of my hallucinations in some detail a couple were very long and involved; others were unrelated and short. I had problems with a clock with multiple faces and when I came home there was a new toaster that used to follow me round in the kitchen. That doesn’t cause me problems anymore because of my strategies learnt through CBT. The other hallucinations, whilst I can remember them, don’t cause me any problems anymore.

When I was out of it the O2 was supplied through my trachy. Once it was removed I had a nasal supply.

Oh ok! Wow! So in rehab, they give support for the psychological issues as well?

That’s a sore point!!! It depends on the health authority and ICU. Some ICU’s have very good after care, some not so good abs some not at all. Covid may change this as the many after effects suffered by covid patients which are well publicised were previously suffered by icu patients.

In my case I was sent from one health authority to another so the answer to your question is no. I actually paid for my CBT sessions. In the early stages of coming home I had quite a few mental problems and needed to do something about it. Generally I am slowly recovering. It’s now 14 months since I came home I have memory issues, I am physically much stronger, I have put weight back on and I can eat most foods.

Aah Ok, I wondered. I definitely want to keep that in mind for him, if he’s still having issues at the point of coming home. Thanks for your reply!

Among ridiculous things I said to my family were "the medical staff are ruining my good name and I will take them to court" , "I'm taking part in secret medical experiments", and "they are giving me hard bread to choke me". Also your life and actions are so 99pc under medical staff control (and for weeks/months on end) sometimes your fuddled mind just rebels and says "no!", it can be something small like refusing to have your bed tilted or pillows rearranged, but it is asserting a tiny bit of independence.

I can identify with most of what has been said in this trail. I lost 2 1/2 store after being on ICU (ventilated for ten) and I also had delirium which led me to make some wild accusations to the staff! All I can say is persevere as I am now at home and getting stronger daily. The delirium will pass, strength and mobility will return, normality will arrive. It all takes time, patience and perseverance - stay strong

jld85 profile image
jld85 in reply to NSMOD

Thank you so much for that. Just you saying that helped me this morning. We’re trying to just take one day at a time and know he’s gonna get there. It’s just going to take time. Once you were off of the vent, did you get to go straight to a regular cannula? Or what were you on at first? My dad is currently using a high flow nasal cannula.

NSMOD profile image
NSMOD in reply to jld85

Hiya,

I went from the ventilator to high flow nasal canulla and facemasks; then gradually weaned down from 10 litres to 2 and that was the trigger to move off ICU and back to a "normal" covid ward. Two weeks after that i went to rehab unit fro a fortnight then home after another two weeks.

I came home six weeks ago and was very weak. I am now able to walk unaided for short distances and longer with a stick. I am now able to wash and shower (nearly) independently and have just been out for a drive in my car which I have not done since January. Even managed a cheeky pint. It will get better and easier with time. I am 62 if that gives some context.

Please don't underestimate how important family support is and how much he will rely on that

Good luck :)

jld85 profile image
jld85 in reply to NSMOD

My dad will be 66 in August. So he’s not too much older. But yes, he is very weak. It’s so pitiful looking and then with the delirium too, it’s just not like the same person right now. But I am thankful he’s off the vent, so I’m not going to complain. He’s lost so much weight too. He can move his arms on his own and that’s about it. Just the look on his face is complete exhaustion. Did you seem to be this way? I know yesterday they said he worked really hard with PT and was just exhausted. He’s actually already out of ICU and in step down, but still using the high flow nasal cannula.

Oh wow, so everyone really does go through it. I had asked the other person that commented on here if he remembered being that way. Do you remember those things or were you told that after? What does it feel like in the moment? I’m sure it’s hard to even explain, if you can. I know it may not be the exact same as my dad, but I just wish I knew.

I had asked the others as well and an just curious. Once you were off vent, what type of oxygen did you receive? My dad is currently on high flow nasal cannula.

Every ICU patient's experience is 100 per cent reality to them, and it takes weeks and months afterwards for them to process what was real and what wasn't.

But that filtering of real/unreal will take place, and it is good that you remember these strange things he said to you and your sister, it will be a great help in his future recovery.

That helps. One more question and I’ll quit bugging you! Did you seem to be extremely weak at first? He is unbelievably weak. I just looked at his poor thigh, he is skin and bones. I’ve never seen him like that. :( It’s so sad. I know you guys have said you’ve lost a lot of weight. Was it that bad?

Ferham profile image
Ferham in reply to jld85

HI My husband had covid in the 1st wave, was on a vent for nearly 6 weeks, he was a shadow of his former self when he went onto a step down ward. He had lost over2.5 stone and went from going to the gym 2/3 a week to not being able to lift his phone or a drink . He also had severe delirium for 2 weeks. Physio was exceptionally painful for him, he pushed though it and is now able to walk and drive independently . He did have a high temperature for weeks even after he came out of ITU.

It does get so much better with time, hold on tight its a rollercoaster of a ride , but worth it at the end .

jld85 profile image
jld85 in reply to Ferham

We’re trying to for sure and praying! My dad had an episode this morning where they removed his biPAP machine he slept in and put the high flow nasal cannula back on. He started breathing fast and said he couldn’t breathe through his nose. We initially thought maybe stopped up from starting to use the biPAP machine. But once they gave him a sedative and calmed him down and turned up oxygen a bit, he said he could breathe through his nose. So we’re not sure if a panic attack? Or maybe it was pretty stopped up? Or a combination of both?

Ferham profile image
Ferham in reply to jld85

It sounds like a panic attack, when my husband was being moved onto a step down ward they confirmed his breathing was rapid, they described it as fight or flight, it possibly was a panic attack. You won't stop worrying even when he is back home .

jld85 profile image
jld85 in reply to Ferham

Did they give him meds for anxiety or panic attacks?

Ferham profile image
Ferham in reply to jld85

Not at this stage no .

jld85 profile image
jld85 in reply to Ferham

Oh ok. They started him on buspar when he was about to get off of the vent, but I doubt that’s gotten into his system enough to get therapeutic effects from it. I’m sure that’s something they see a lot and I’m sure (hopefully) they will treat him accordingly!

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