Long story but I will try to make this as short as I can. My mom has been on the ventilator for 3 months. She ended up in the hospital having trouble breathing and she had a low heart rate. She had to to get put on the ventilator. She was getting better, got off of the ventilator and out of the ICU but then she had to get re-intubated again due to aspiration. She has a tracheotomy as well. She turned septic and was on vasopressors. Ever since she got re-intubated, she was not “with it.” She wasn’t following commands, would only open her eyes and just be in a zombie like state. The doctors at the hospital were awful to my sister and I. We are both 29 years old and never thought we would have a sick parent for a long time. My mom is a senior but still considered a “young” senior at 66. The doctor suggested I take my mom off life support and let her go since she wasn’t waking up. It was the worst time of our lives and I don’t even want to talk about it because I get so much anxiety. I could say more about that but I won’t right now. Anyways, my sister and I refused and they sent my mom to a long term care hospital. “Ltach”. They specialize in vent weaning. After a few weeks at the ltach she got better! She got off the vassopressors. She was on levophed when she got there. Her blood pressure still dips sometimes so they’ve been giving her midodrine. She has been there for over 2 months. She follows commands and mouths words to me on FaceTime! The only time she had an bad time there was when her oxygen started to dip and she was unconscious for a few minutes. They took an ABG blood test and determined that her c02 was at a high level and that’s what caused that. Thankfully her c02 has come down now and her stats look pretty good. She is still responsive and alert and she’s been consistent with that for over a month. The last couple of days when they wean her on the CPAP mode she doesn’t tolerate it well. The RT asked my mom if she gets scared when they put her on it and she said yes. On FaceTime I could see on her face how scared she was and she was asking for air. The nurse told me it’s really common for ventilated patients to become scared and fail their trials. When she was in her zombie state she would tolerate the weaning for 12+ hours. Now it’s seems like since she’s awake and with it she doesn’t do well with the weaning trials. RT is now talking about giving her some anti anxiety meds to help her cope with the weaning. Has anyone every gone through anything like this? I’m also nervous the anxiety medications might make her blood pressure dip even lower. It’s like a double edge sword. My mom also had kidney failure and gets dialysis 3x weekly. I also would like to say if you have a sick loved one don’t give up on them! My mom has a long road of healing ahead of her but she has come SO far! Hang in there. Thank you for reading my novel!
Anxiety and vent weaning? Also a novel of my moms... - ICUsteps
Anxiety and vent weaning? Also a novel of my moms icu experience
I like your description of your mother “young senior” that makes me think I’m an old teenager at 72.
I was lucky for two reasons one the staff were excellent on ICU and because I came home mid March I had been able to have visitors.
I’m not aware of my family being asked to switch me off, if it happened they haven’t told me although I know they were told I wasn’t going to survive on a number of occasions.
I was sedated / ventilated (with a trachy) for 6-8 weeks and didn’t want to come round - I just wasn’t ready. I did have moments when I appeared to come round and there were times when I just didn’t understand or know what was going on and it was scary, memory of this is poor to non existent however hallucinations are very real.
Once I did come round I had to learn to swallow, speak, eat and because of the weight / muscle loss walk again.
As I said I am home and slowly recovering.
It is very important that you and your sister look after yourselves. I know from my own family 4 daughters and a son and 12 GChildren that it effects all of them in different ways.
I was short of support when I can out of hospital and found this site in June and I also joined ICUstepschester which although out of my geographic area provides zoom support for chair exercises, chair yoga and support meetings for relatives separately and jointly for all.
Hi FamilyHistorian,
Thank you for sharing your story. Gives me hope! My mom was out of it for months and I really thought she would never come around. Now for the last month or so she’s been coming around and following commands, mouthing words, etc. Some days are better than others. One day she’ll be bright and perky and mouth a lot of words to me, and then the next day she kind of just stares out to space, will nod at my questions every so often. It’s up and down. I just think with everything she’s going through it’s will take a long time. Especially like you said with learning to swallow again, walk again, etc. Shes already lost 75 pounds in there. My mom has always been on the heavier side so I’m hoping the weight loss will help her and hopefully it’s not muscle loss. Thank you for responding to me. You are so inspiring! All the best to you and your family.
Welcome @Alex319
It’s awful how you all have been treated. Thankfully I was treated by an excellent & caring ICU team who saved my life, even the domestic staff were lovely & supportive.
I don’t want you to assume I have any medical qualifications because I don’t (😊) but has there been any mention of your Mom suffering from ICU delirium? She maybe having some sort of flashback associated with CPAP mask or just feel slightly claustrophobic? By the time I got round to using CPAP,PEeP & nebulisers - I was so sick of being prodded, poked & messed around with, I didn’t want anymore ‘stuff’ doing. I wanted to be left alone.
I understand your anxiety about her bp dropping, it’s important to drink loads of fluid - mine has remained very low ever since ICU & my heart goes into strange rhythms - the obs machines can record me fluctuating between 60 - 45 over the course of a minute or two.
As you say never give up
Hi Sepsur,
When my mom was in the ICU at the general hospital the neurologist said she was more than likely suffering from delirium. Since she got to the long term care hospital she is awake and follows commands! Some days are better than others. The last 2 days she’s not as “bright” as she’s been the last month or so. She still follows commands but isn’t as perky I’d say. So a lot of ups and downs. She’s still on the ventilator, but they haven’t been weaning her much lately due to having a infected pressure ulcer. They don’t want to wean her while her body is fighting the infection.
Thank you so much for responding! I read in one of your comments that you were on the ventilator for 90 days?! What was that like? How did you finally get off of it? My mom has been on her vent for about that long with 35% oxygen. I stress everyday about it 
You seem like a very strong person and you're very inspiring!
I had been intubated for around 57 days, I don’t remember moving from intubation to a trachy- I think I was still unconscious - I was definitely delirious. I then was on a trachy for approx 2 more weeks and then a combination of CPAP, PEEP & nebulisers - either to help me breath, bring up saturation levels or help me fight another infection. I was glad to get rid of trachy. The rest were fine but I did get to the point where I was just sick of all the procedures, I was exhausted by it.
I do remember suctioning of the lungs as being particularly unpleasant ( but necessary). Every time I lost another line or catheter was a victory as I saw it. I dropped down to the wards on a nebuliser & IV drip for antibiotics having been hooked up to every machine in the place at one time.
Hi Sepsur,
All of that does sound super exhausting! When I see them suctioning my moms lungs she always winces and I feel so bad.☹️ My mom is fighting some sort of infection. She had a fever yesterday and today. Her WBC count is 14 which is pretty high they said but not critically high. She’s not as responsive as she was, but they told me it’s because the fever makes her sleepy. They have been giving her Tylenol and cold towel baths to help her. They took cultures of her pressure wounds, no final result yet on those but so far no growth. Not sure what infection she’s battling but they are taking chest X-ray today. She has dialysis catheter and trach so I’m wondering if she got infection from either of those? She’s on 2 drop antibiotics now. What infections did you have? Hoping I find out more today. Thanks for responding to me! All the best to you.
I picked up some that were never quantified, they could tell I had infections ( often chest) - So I would be treated with broad spectrum antibiotics or antivirals.
What I do know I picked up was VRE, CMV, EBV, HHV6, MSSA & glandular fever. Each of these was much more ominous because I was critically ill & so immune compromised. Many of these infections could have led back to pneumonia and the whole palaver would have begun again. I hope you get better news soon with your Mum.
HI Alexa, I live in the UK and so many people sadly criticise our Wonderful NHS,I can't praise or thank them enough. I know the anxiety and worry and trauma you are feeling only too well .
I am sorry for the way you have been treated . When they tried the sedation hold (numerous times - scores actually) it just didn't work and he got very distressed , his BP would increase along with his heart rate. They did give him anxiety meds in the end
Eventually they managed to remove all his sedation and it took weeks for him to come round, your mum has been on strong meds for a long time, it will take a while for these to leave her system especially if she is on dialysis.
Are you able to visit your mum or send her videos which may ease her anxiety ? x
hi alex,
i was ventilated for 6 weeks earlier this year (i’m a 21 year old female) and a few of my awake attempts were similar to what you describe. i don’t remember any of the attempts before my last one (where i was fully awake) but apparently my mum & sister came to see me and i was using my eyes to communicate. when i finally came around, i became panicked whenever i had oxygen removed because i had also suffered from aspiration and multiple choking incidents to the point that i failed my SALT trials more than 3 times as i became so panicked on learning to swallow i caused myself to choke and think too much of it. this literally just took time and lots of patience with myself, and as frustrating as it can be it DOES progress but at a much slower rate than what you’d hope recovery would be.
My husband is in icu for 6 weeks now and he’s not fully conscious. He opens his eyes like your mum did but won’t move or make any eye contact. Not sure why because he hasn’t got any brain damage. Did you realise anything that particularly helped your mum respond to the nurses? I mean I go in and talk to him but not sure if he can hear me or not.
Hi 0608
I can repeat what I have said before it was 6-8 weeks before I was ready to come round.
You will get different answers about awareness. But as far as I can “remember” there were times when I might have been conscious of what was going on and I think I might have been coherent although that would have been very difficult without a voice box. So it is probably all in my head.
At this time it is most important that you look after yourself and rely on the hospital to do their job.
So this so vague but that is the way it is for me.
There is a lot of info on this page which might help you understand what is going on - intensive care guide & delirium pdf is very enlightening icustepschester.org/informa...
Hi 0608,
I’m so sorry you’re going through this with your husband! My mom was totally out of it for over 2 months. She would open her eyes every now and then but it took a long time for her to start communicating with me. Hoping your husband just needs time. My mom had a ct scan and mri done and they didn’t find any damage either. Honestly, I’m not sure what made her wake up! I wasn’t able to visit her only through video. I did bring them an iPad and they set it up so I could see her and talk to her even though she was totally out of It. Even though it was hard to see her on FaceTime I did it everyday. I think that helps a lot. Hang in there! Sometimes certain patients need more time than others. Hoping for the best for your husband. 💛
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