Physical Therapy once off of vent : Hey guys, it’s... - ICUsteps

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Physical Therapy once off of vent

jld85 profile image
jld85

Hey guys, it’s me again. I know we’ve talked some on this but how long did it take for some of you to be able to be mobile again after being on a ventilator. My dad has been off of the ventilator a week now and they’ve done some PT with him. He’s not actually gotten out of bed at all, but I know they’ve been setting him up on the side of the bed. Unsure if they’ve done anything else. But poor thing seems so weak, it’s just bothersome to me because it makes me feel like his poor little legs will take forever to be able to stand on their own again. He’s lost a lot of weight and muscle in his legs. Does it take awhile to be able to actually stand and move around again?

34 Replies

I’ve said it before and I will say it again we are all different. Initially I was hoisted out of bed and put in a chair. I had difficulty moving to the edge of the bed on my own. Once I did, I still couldn’t stand I found it difficult to put weight on my legs with support on the count by the physio. I got him to me doing the count and it started to get easier albeit landing back on the bed exhausted. I’m 6’2 and they brought in some equipment called a pulpit which was a frame on wheels that adjusted in height as you stand up.

It took time!

I figure it will! I’m just ready for the day he walks again!

Yes, acknowledging we are all different - some people take days, some weeks, some months of perseverance - it depends on so many factors. They started by sitting me in a chair for an hour, then sitting over the bed, then standing etc etc

At first it would take 4 or 5 physios/OT/nurses/HCAs to move me

jld85 profile image
jld85 in reply to Sepsur

It’s going to take him a bit I’m sure. On top of all of this, he has a bad back. He typically gets injections in his back and has nerve damage. He also goes to a pain clinic where they manage that. He’s laid in bed and gotten so stiff and even in his delirium, he’s been complaining of his back hurting. But of course they can’t give any of those types of meds until his mind comes back to him.

Marty29 profile image
Marty29 in reply to jld85

ICU delerium for me was the most haunting aspect of being in ICU, caused by the drugs, treatments and general atmosphere of ICU. I was there for a total of 14 weeks. The staff new I had delirium, and it is not uncommon. But it left as soon as I was moved from ICU, and once I knew I had been dreaming, it was quite upsetting as the dreams seemed very real.

jld85 profile image
jld85 in reply to Marty29

Oh wow, I can’t imagine going through the delirium. I hope my dad comes out of it soon. I’m glad he’s here, that’s the most important thing, but it’s still sad to see him like that! But I’m sure he’ll come around soon enough!

For me it was a long haul. After ICU I could not walk, but was transfered to a community hospital for PT, and after about 3 weeks I was able to walk with a frame and go to the washroom unassisted. After a further 3 weeks I could walk using a stick. Thanks to Buckingham Community Hospital.

jld85 profile image
jld85 in reply to Marty29

Yes, he’s only sitting up on the side of the bed right now. I noticed that occupational therapy had him trying to write a little too. It was very scribbly, but I could tell what he was trying to write!

Sleepalotmore profile image
Sleepalotmore in reply to jld85

I recall getting an alphabet board and slowly spelt out words although in a muddled way. I had forgotten how to spell things as well as the order of words! Couldn't hold or control a pen for a good 2 weeks or more.

jld85 profile image
jld85 in reply to Sleepalotmore

Oh wow. I can’t imagine the weakness and exhaustion that you all go through. I’m sure there’s nothing that compares to it.

He’ll get there in his own time. I was in the final stage of training for a marathon when I went into ICU, and three weeks out of ICU before I could get myself out of bed and walk with a Zimmer. The first few times they got me out with the pulpit thingummy that FamilyHistorian mentions were terrifying – feelings of total weakness and danger. As I came out of delirium, I was astounded by my thin legs – so much muscle had disappeared – they couldn’t be mine! A year on and I’m doing five-hour walks and training for a half-marathon.

jld85 profile image
jld85 in reply to Rach2Sym

Wow! It’s amazing what the body can come brand from!

From my experience of watching my brother it is absolutely exhausting and painful being taken out of bed to be sitting in a chair for 1/2 hour. This gradually progresses through a series of stages to being able to walk up and down stairs with a stick and that is when people can come home. Three years on my brother is well and active. I hope your Dad continues to make good progress.

jld85 profile image
jld85 in reply to Copse77

I’m sure it is very exhausting. You can just see the look of exhaustion On him at all times it seems. And thank you, me too!

I was on an ECMO machine and ventilator for 6 weeks, it took me several weeks to become mobile again. But a year on, I'm almost back to normal, just extremely weak and achy. But I can get around independently.

jld85 profile image
jld85 in reply to Sleepalotmore

It’s just going to take him some time, I suppose. I’m glad you’re doing better!

Oh yes! I lost 15kg or so in the time I was in ICU. Now losing 5 wasn’t a bad idea but 15 in 40 days is not the recommended way of winning weight watcher of the month. Categorising different experiences I would also say that standing up,for,the first time was for me the most challenging thing I remember in my life. You just have to remember that it is not the physios that ultimately are going to get you out. They will,do everything they can to help,but the determination has to come from the patient and there are times when it all seems just too much. That being said it is surprising how much progress can be made in a few weeks. I was bribed by the chance of having a catheter taken out and being able to toilet if I could get there on the walking frame. I wasn’t allowed any visitors cos of covid but if this has changed I am sure family encouragement would help a lot. I imagined my dead father encouraging me!

jld85 profile image
jld85 in reply to Tedsdad

We’ve actually been able to go up and I’m glad. He’s still in his delirium phase which probably doesn’t help a lot. He seems to have done better with therapy when my sister or mom have been up. But he has still done ok! I’m sure that we will look back on this day and think wow, he’s come so far! I’m praying for that day!

Tedsdad profile image
Tedsdad in reply to jld85

Yes it works like that. My surgeon told me always to think about how far I had come rather than how far I had to,go. I am still on 8 meds aday everyone of which could make me dizzy and at least one of them still is!

jld85 profile image
jld85 in reply to Tedsdad

That’s definitely a positive way to look at it, you just have to get in that mindset!

It was 3 weeks after coma/life support for me to walk again safely. I was so frustrated that it took so long! They said that it was amazing that I could walk after only 3 weeks and not to be so tough on myself😊 if he tries too early and has a fall? He could lose confidence 😳 it will happen 👍 he’s a warrior, fighter & survivor to come this far😃 you must be really proud of him x

jld85 profile image
jld85 in reply to moemelling

I am, he’s tough for sure! I’m so thankful he made it off of the vent. We still have a ways to go though! One day at a time!!

moemelling profile image
moemelling in reply to jld85

My physical therapy cheered me on with every bit of progress that I made. Like standing for the first time or sitting in a chair 😃like you would with a small child who has just drawn a crappy picture 🤣 it wasn’t at all patronising! I’m a 53 year old bank manager ffs🤦‍♀️ But it was exactly what I needed👍 I went out of my way to impress them and make them proud 😀 I had a tracheotomy in for 6 weeks so no food or drink whatsoever the entire time😩 I was desperate for a cold orange juice 🍊 when the day finally came for me to drink for the first time my medical team made a big deal of it by clapping 👏 & cheering 😆 it sounds so daft looking back!!

jld85 profile image
jld85 in reply to moemelling

That’s so great! He’s got a horrible, horrible back. He has nerve damage and was getting shots in his back before all of this. He also was managed with a pain clinic on 2 different meds. He’s not been able to have anything and he’s in pain so it makes moving with PT so hard. Finally the doctor approved him to have one of his meds back. They don’t want to give both and it being bc he is taking a couple of meds for anxiety too. All of this has caused anxiety and of course he has the agitation, post vent.

moemelling profile image
moemelling in reply to jld85

Diazepam (Valium) 5mg twice daily really helped me.

jld85 profile image
jld85 in reply to moemelling

I wish they’d do something like that, than what he’s on now. They gave him buspar in icu, started him on seroquel about a week ago bc of an agitation/anxiety spell he had. So now dr has approved to start gabapentin again and she doesn’t want to take him off of the seroquel. We really wanted him off the seroquel though. Obviously the dr knows more than me, but idk. I’m just worried that with seroquel and gabapentin, it’ll knock him out.

moemelling profile image
moemelling in reply to jld85

Gabapentin never worked for me in the past for MS😣 they’re supposed to be amazing for nerve damage pain (which I’m still really suffering with and I’m waiting to see a specialist team about it). I stayed in Critical Care for 2 weeks after waking up from coma. I don’t remember ever having to ask anyone for pain relief or Diazepam etc? They just seemed so clued up about what I must have needed. They gave me 10mg Diazepam twice daily via nasal feeding tube the first week then reduced that to 5mg the 2nd week.

Once I left Critical Care and moved to a general medical ward it was like being thrown out of first class into economy😖😣 I had to ask, argue &!sometimes beg for pain relief 🥲 or any meds😡 it’s common after ventilator that your saliva glands stop working 😩 mine are only just improving now! My tongue, gums & inner cheeks were destroyed with ulcers that were so uncomfortable 😩🤦‍♀️ I’ve been using synthetic saliva which works👍 But you do need a lot of it. Even asking for some mouth ulcer gel I had to complain and go over the nurses head!

jld85 profile image
jld85 in reply to moemelling

Oh my! Yes the doctor didn’t want to give him the hydrocodone just yet bc he’s only been off the vent about a week and a day and still has the delirium. So she only wanted to do the gabapentin.

I was on ventilator for 3 weeks after having OHS because of endocarditis. Then I ended going into a coma for 3 months. A year later I still can’t walk despite having PT 4x a week. I have improved greatly can use a walker for 10 minutes. Im 63 y/o. My timeframe was 2 years. Good luck

jld85 profile image
jld85 in reply to Randyd501

Wow, bless your heart! You went through a lot as well! Glad you’re still here!

I don’t think it is the vent as much as long as how long one has lain in bed without moving that causes the muscle wastage and the consequent weakness.

If you think about how long a baby takes to be able to walk, to develop a sense of balance, because that goes as well, and in addition an adult with no sense of balance and no muscle tone weighs a lot more and is a lot less flexible so a fall is far more serious than for a baby.

When you have recovered enough after ICU it takes time to realise what has happened to you. I expected to be in for a couple of days but was in a lot longer, so I had no expectation and as it wasn’t anticipated I was not warned about what it would do to me.Six months on I still am to foggy to drive and I can get occasional crippling dizzy spells and have an abscess which will not heal user trache scar.

I can understand how it can be bothersome to you but it will be totally demoralising for him in a way which no one who has not experienced this can understand. It can take a very long time to recover and your dad will need every ounce of guts and determination that he can find and be prepared to cooperate fully with physio and cardiac support team, And you will need to learn a whole new sets of skills in knowing when to be kind and sympathetic and when to be firm.

jld85 profile image
jld85 in reply to Tedsdad

Thank you for that reply! Yes, I’m sure it’s a whole lot. We’re actually having issues with one of the meds they had been giving him and hopefully will get a neurologist in tomorrow to get their opinion. Pretty sure he is having some kind of tardive dyskinesia from the seroquel. We had started to slowly take him off of it. We quit giving it to him for a couple of nights bc he has been so tired, so we just tried that out. Well, he started doing this jerking with his head and grimacing. So they gave it back to him tonight and we’re going to slowly continue to taper off. Also today he developed a fever and they started IV antibiotics. They are running cultures and things to see exactly what’s going on or where the infection is. They’re wondering if it’s not hospital acquired pneumonia. I’m also thinking maybe a UTI where they took his catheter out? Idk. Have you ever heard of any of this?

I avoided the hospital acquired pneumonia but did pick up cellulitis after a pleural effusion drain was put in. Sometimes it seems like you are in a cross between being a counter in a medical a board game and a sort of medical theme park where everybody is on your side but the further it goes the more chances there are of something else happening that wasn’t expected so it’s like being on a. Roller coaster that you can’t get off and you have no control and are powerless except in determination and hope.

It sounds like you can visit Because of covid I wasn’t allowed any visitors for months. In some ways that was a blessing as I was totally out of it apart from hallucinations and although my wife had phine access at any time to ICU she didn’t know details.

jld85 profile image
jld85 in reply to Tedsdad

Oh, I’m sure. It has been a roller coaster for us as well. But he’s off the vent and he’s here with us, so that’s the most important thing. Yes, they lifted covid restrictions not too long ago! So we’re able to visit!

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