long term ventilation

[Ashleylk91]

my mom has been on ventilator for about 3 months now with a trach. They are wanting to deem her ventilator dependent. Can someone please give me hope and some success stories regarding this? Coming off ventilator after long term use ..

[Sepsur]

I was ventilated and in an induced coma for 57 days, I then had trachy for a period of approx 2 weeks and then CPAP, nasal prongs, nebulisers in ever decreasing amount until about 90 days. I drop down to wards with some oxygen dependency but finally discharged from hospital after 120 days - breathing completely independently

[Ashleylk91 in reply to Sepsur]

How long were you awake and struggling the ventilator? Because my mom has been “awake” for about 60 days of it with set backs in between

[Sepsur in reply to Ashleylk91]

I don’t remember being conscious intubated although I was semiconscious for about 3 days ( I think ) I had a trachy conscious for about 2wks

[Ashleylk91 in reply to Sepsur]

Sorry I meant during the trach! What initially got you intubated if you don’t mind

[Sepsur in reply to Ashleylk91]

Avian flu, strep A , double pneumonia, multiple organ failure, leukaemia severe ARDS for starters. I then caught EBV, CMV, VRE & MSSA & glandular fever in ICU 😊

[Ashleylk91 in reply to Sepsur]

also thank you for your reply so much. I’m happy you’ve recovered.

[CCXLI]

Hi.I was in a coma for just over a month, majority of it ventilated with a tracheostomy. I was moved to the 'long term ventilation' unit of the hospital in cardiff when I remained on a ventilator for 5 months. It was very long process where they had to to reduce various settings as to reduce my dependency on the ventilator. After 5 months I came off vent and had tracheostomy removed. That was in January this year. I still use little oxygen through the days and a cpap machine at night. It's a long journey but I'm proof you can still live a new reduced lifestyle following it. Although everyone's recovery is indeed different. Wishing your mom the very best and im here to answer any questions (to best of my limited knowledge)

[Ashleylk91 in reply to CCXLI]

Thank you so much! This gives me so much hope. Did you have times you’d get better than go backwards on the vent?

[CCXLI in reply to Ashleylk91]

Yeah it was a long process but it was very rarely linear. One day I'd make strides and they would reduce my 'peep' and support, other days it would have to go back up. Then there would be days where they would try you off support for minutes at a time. It was like running a marathon over the course of several minutes. If there were days where I had an infection (had ecoli a few times) then it would go backwards and then try to regain pace.

[Ashleylk91 in reply to CCXLI]

This seems like exactly what my mom is going through.

[Ashleylk91 in reply to CCXLI]

so glad you’ve came this far

[Ashleylk91 in reply to CCXLI]

When you say a little oxygen through the days like randomly during the day or a little amount the whole day?

[BigH63]

Hi. I was in induced coma and paralysed and intubated for 27 days. I then had a Tracheotomy but I was never awake and intubated thank god.

I was awake with Tracheotomy

[Ashleylk91 in reply to BigH63]

Were you on the ventilator with your trach ?

[BigH63 in reply to Ashleylk91]

Do you mean at the same time ? Not sure what you’re asking. Sorry

[Ashleylk91 in reply to BigH63]

Sorry I’m still learning a lot. My mom has a trach but it’s connected to the ventilator to help her breathe. Is that what you had or just the open trach?

[BigH63 in reply to Ashleylk91]

No need to be sorry at all. Ok I understand what you’re saying. No I was intubated then that was removed and I had Tractotomy Sorry for the confusion. I hope thing improve soon.

[trauma_alchemist]

Hi Ashley, what is the part concerning you? That your mother won't get off the ventilator? Is this "ventilator dependent" something that the doctors said? Is she in a care facility currently?

People have come off ventilators and had trachs removed after all different length of support - it really depends on the reason she has the respiratory failure, what type of damage has been done to her lungs, and how her overall nutrition and strength/rehabilitation is as to whether she can wean off the ventilator support. Once off a ventilator for a short period, the trach can be capped, then downsized to a smaller one, and then removed altogether if all that is tolerated. "Ventilator dependent" is just a term, but it doesn't mean anything with regard to whether it's permanent. It just means as of now, she's been chronically (>90 days) supported by the ventilator.

I'm happy to answer further if you can clarify.

[EdinCat83]

Hi Ashley. My mum was in an induced coma for 6 weeks following CA from 11th June and then she gradually opened her eyes and they changed her to a trachey end of July. She’s still on the vent (4 months later). It’s been a journey. Infection after infection - setting her back. But slowly she has made progress helped by the progression in her state of consciousness. She’s now minimally conscious plus. She is off pressure support entirely and maintains a PEEP of 5. Even with a chest infection. She is currently doing 6 hours a day with cuff down and speaking valve on. She gets super tried by the evening. It’s like running a marathon. I also worry about the long length of time but it’s not linear and little improvements every day. Hold on to them. My mums lung almost collapsed twice in earlier days. So any improvements are important. I was told my mum would never wake up, if she did she would have no sense of awareness of self or environment and that she would never talk again. Miraculously after 3 months in a vegetative state. She started to respond. Nods and shakes of head - then words - my name etc. So I need to hang on to that and trust she will get there with the vent I give her pep talks most days. Shes probably like god not this pep talk again about the vent 😂

[Lydroys14]

I currently spent 3 months in ICU with a tracky and it took awhile till I was strong enough and confident enough to come off it, probably the hardest part of it but it is possible never give up hope x