Speech and standing after vent

[jld85]

I know we’ve spoke a little on this, or atleast a couple people have said. But how long after the vent ( I know everyone will be different) did it take for you to be able to swallow/talk again? (To be able to speak louder than a whisper). Also, when were you actually able to stand up again? Is this normal for it to take awhile?

[Hidden]

I dont really remember how long it took to recover speach, but think it was soon after being taken off vent. I had a tube for feed for longer and that was taken out say 3 weeks after. Standing up without any aids was longer probably 8 weeks, but not until I was in Buckingham Community Hospital and having daily physio.

[FamilyHistorian]

I had a voice box attached to my trachy. Once my breathing was sorted the trachy was removed and I was able to use my own voice. Very tiring and had to be careful.

I still had had my trachy when I was standing.

Swallowing was a different matter. I had exercises to do using ice chips. Before I was allowed sips of water then squash and then tea. I would guess it was about 5 weeks between removing my trachy and starting on baby food and then having my feeding tube removed. It was about a further 4 - 5 months before I was eating relatively normal food.

[Mark_Hudson]

So Speech can take awhile, it took me a week or so but I know others where longer, swallowing could be longer aswell. There is no hard and fast rule because they depend on a lot of things. In ICU you lose about 7% of your mass per day on venti lost about 27kg/ 60lbs ish so it takes a while to recover the muscle.

The muscle weakness is what makes moving hard, it can months to walk unaided by the end of my 17 week hospital stay I could walk couple hundred metres but I was extremely tired. No aspect of ICU recovery is quick. Full recovery takes years in most people, it will take a lot of patience and support but they’ll get there.

[jld85 in reply to Mark_Hudson]

Wow. Yea, I imagine it will take a lot of time. He’s probably lost about that much weight or maybe a little more. I know I’ve looked at his legs and they are almost skin and bone. It almost looks impossible to get his legs going again, but I know they will. He also said his throat wasn’t hurting anymore, he’s just very quiet when he talks, sometimes more than others. He does eat small ice chips and can swallow, but that’s as far as we’ve gotten. Did you have the delirium after? I know most people do, just wanted to see your experience? If so, how long did it last?

[Mark_Hudson in reply to jld85]

I had delirium in ICU didn’t have it after icu, I was in icu for 3 weeks. The effects of icu delirium are still with me 5 years after. If he is still having delirium reminding him of the time date and where he is can be helpful. Also pictures of loved ones can be helpful, if your dad needs glasses or hearing aid make sure he has them and they are working.

[jld85 in reply to Mark_Hudson]

My sister actually made a notebook that had the day and date on each page and also a picture of family, his home, etc. on each page. We also show him pics on our phones and we do put his glasses on him some. He’s been off the vent around 2 weeks and still has some delirium. He comes off with some off the wall things but there’s times he’s still there too.

[Mark_Hudson in reply to jld85]

Has his team noticed this? Delirium is caused by something else pain, infection, malnourishment, constipation, hydration, medication and electrolytes. So it might be something is still going on, I’d suggest making sure they know he’s delirious and ask if it’s normal for him to still be delirious

[KatVG in reply to jld85]

I had delirium in ICU but that passed quite quickly after I was moved onto a normal ward. All of the medications I was being given and my low oxygen levels meant I was in and out of consciousness. After the induced coma the delirium was worse.

[Tedsdad]

Standing up again was the hardest thing I have ever done in my life. In 3 months I went from walking ten miles a day to not being able to stand through dizziness and total loss of muscle tone. But six months on from that I still get dizzy, down to meds but strength is well on the way back. But you gave to it for yourself. It was tracheostomy that did for my voice and though I am a lot better I don’t think it will ever come back properly.

[jld85 in reply to Tedsdad]

I imagine it’s going to take quite some time. I’ve never seen anything like this. We just have to give it time and have patience! Did your oxygen drop quite a bit at first, when moving or say if you had to remove oxygen mask or cannula for whatever reason and then once you got it back on, you could recover quickly?

[FamilyHistorian in reply to Tedsdad]

Have you asked about the meds. I was getting dizzy and by changing just one of them to evening it stopped.

I have lost my laugh which was very distinctive but I can laugh - but but cough a lot afterwards.

[jld85 in reply to FamilyHistorian]

Well they gave him seroquel and we told them it made him super sleepy, so she took out the morning dose. He still gets it at night though. I’m tempted to see if we can take it out all together. It was only given to him for the agitation and stuff that’s common when coming off of a vent. I know that’s a pretty strong drug, to some people, so I don’t want him to have it . But also, if it helps him sleep, I’d like that too. I just don’t know. They had also started him on Buspar while he was on the vent, for anxiety. He had developed anxiety with all of this, which is fairly common as well. So I’m thinking that may be enough for him. I also know some people require a cocktail of meds to help that, but I just don’t know about the seroquel?

[Tedsdad in reply to FamilyHistorian]

I had such a horrific set of circumstances around the operation going wrong that I was loathe to ask too many questions about meds but I have a follow up in a couple of weeks and I will ask about them then.I was put on an anti depression one as a matter of course which when I worked out what it was I negotiated my way out of in the same way that I have declined any pain killers. I was spared bad ICU delusions and decided to keep it that way.Of the eight meds I am still on seven have the potential of causing dizziness.

[Gooddaysunshine]

I am afraid that before standing up there is the agony of trying to sit unaided on the side of the bed, without the pillow backrest to support you. All you can feel is the force of gravity (something we normally do not notice) trying to pull your weakened body downwards.It took me three days of really really trying, after I had been moved to a heart/lung ward, to merely stand upright, and only then with the assistance of a device called a SARA STEDY.

So be aware everything takes a very long time, particularly at the start of recovery when you just want to rest and there are physios and other medical staff prodding you into action!

[jld85 in reply to Gooddaysunshine]

Makes sense. He’s only been sitting on the side of the bed some, that’s about as far as we’ve gotten. Did your oxygen drop at first when doing a lot?

[Gooddaysunshine in reply to jld85]

I can't remember it doing so. I was off oxygen by then, but they were still doing the BP, temperature, and oxygen checks every few hours.I did still have my nasal feeding tube attached which added somewhat to the trickiness of sitting/standing up.

[jld85 in reply to Gooddaysunshine]

Ooh ok. He’s currently still on 7 liters of oxygen. They also placed a PEG tube and took the NG tube out. They wanted his throat to be able to heal more!

[Sepsur]

Too long. I had my first drink nearly 2 wks after waking and my first food

, 5 days after that. So I must had cleared the SALT team.

[jld85 in reply to Sepsur]

He has been eating on some ice chips, that’s as far as we have gotten. He doesn’t grimace anymore when he swallows and says his throat isn’t hurting anymore! So that’s a plus!

[Sepsur in reply to jld85]

Yes 😊

[FamilyHistorian in reply to jld85]

Ice chips are wonderful. That’s all I had BuT I had to do exercises with them. I forgotten about the pull of gravity but eventually I was using a puppet which for me was excellent

[KatVG]

I was on a ventilator in February and my voice has improved but is still not great. I have been referred for speech therapy. I am still suffering with my mobility and have been referred for physio. Probably not what you want to hear, but at least you know that what you are experiencing is normal.

[jld85 in reply to KatVG]

Yes, that is true. He’s been out of it a lot but he’s really been sooo out of it the last few days. Do you remember being like that after the vent?

[KatVG in reply to jld85]

Oh definitely, I was all over the place, in and out, sometimes not a clue what was going on. It's definitely not unusual

[jld85 in reply to KatVG]

Ok, I guess just part of the road to recovery! Never a smooth ride for sure!

[KatVG in reply to jld85]

Certainly not, but he'll get there slowly