Persistent Vegetative State: My 72 yo mother was... - ICUsteps

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Persistent Vegetative State

Meg_08
Meg_08

My 72 yo mother was hospitalized on 12/14. She had just been discharged on 12/11 after two months of battling pneumonia. I found her unconscious and unresponsive. She was taken to the ER by ambulance. She was immediately intubated and put on a ventilator. I was told by the Pulmonologist that she had pneumonia due to aspiration. She was removed from sedation on 12/18. After a few days she started waking. Opening eyes, facial movement, yawning, and limb movement. She hasn’t improved since. A CT scan and MRI have been performed and show no evidence of brain damage. A trach was put in at the beginning of January and she remains at 45% FiO2 at night. They continue trying to wean her from the vent during the day. We have reached the point (30+ days) where she’s classified as persistent vegetative state. My siblings and I are at a point where we have to make a decision to either move her to a Skilled Nursing Facility with a Ventilator Unit or proceed with end-of-life process. I wanted solid scientific data to help make this decision easier, but after talking with the Neurologist today it doesn’t seem like I will get that. Has anyone had experiences of waking up from sedation after 30 days?

23 Replies

Yes after 57 days myself

Meg_08
Meg_08 in reply to Sepsur

You were off sedation and it took 57 days to regain consciousness?

Sepsur
Sepsur in reply to Meg_08

Sorry - I was sedated for 57 days - it took me 11 days to wake up.

Meg_08
Meg_08 in reply to Sepsur

Okay thank you. That’s what I thought I had read in one of your posts

Sepsur
Sepsur in reply to Meg_08

I’d misconstrued your post 😊.

After 11 days I started to gradually regain consciousness and become more aware.

Some people recovering from a coma because of Covid treatment have been taking weeks to wake up. Some of this is down to the sedatives used to paralyse the patient. There are global shortages of preferred sedative due to the Pandemic. Im sorry I don’t know why others may go into a vegetative or minimally conscious state.

Have you had an EEG done for her? Xx

Meg_08
Meg_08 in reply to Mser94

I asked about an EEG and he said it was performed. I can only assume that was the case and that came back normal as well.

Have PET & SPECT scans been carried out? I ask this as no single type of diagnostic scan is a "catch-all".In essence various scan types offer differing diagnostic opportunities to the phsycian.

Your mother has had both CT & MRI scans - the combination does provide comprehensive diagnosis, but not necessarily absolute.

Much depends on the brain area that has been affected, patients can sometimes drift between vegetative and persistent vegetative states.

If ever there was cause for "2nd opinion", this is it.

Do not be afraid of feeling you may be "insulting" the neurologist's competence - simply explain to the doctor you may have to make decisions you will have to live with for the remainder of your own living days - he will understand.

More importantly, what we're your mother's sentiments regards secondary (artificial / external) life support?

Another consideration is ICU delirium.

This is something your mother may or may not be experiencing - it has been discussed at length on this forum.

Many here have experienced this condition, it's generally quite unpleasant, and affects a massive amount of ICU patients - again, depending on your mother's brain activity, she may or may not be affected. This is something you need to discuss with the neurologist.

If your mother's condition allows for the potential of this phenomenon, you probably would not want to subject her to this for a prolonged period.

Conversely, delirium has the potential to affect the results of cognitive testing when / if a patient is experiencing delirium during evaluation.

Some interesting reading here:

ccforum.biomedcentral.com/a...

**also find out if your mother is a candidate for Zolpidem:

pubmed.ncbi.nlm.nih.gov/234...

bmj.com/rapid-response/2011...

Meg_08
Meg_08 in reply to Grant_za

Thank you! I will ask about those tests as well. My mother left her care entirely up to me to decide, but I have 3 siblings and I take their concerns into consideration as well. Thank you very much for the additional material. I am not certain if I have already read it or not (been researching since this all began).

Grant_za
Grant_za in reply to Meg_08

Hi Meg. Just be careful when researching on the Internet - there is loads of bad info out there. Stick to well respected entities like John's Hopkins Mayo Clinic, The Lancet etc.

Keep in mind, my post was really opinion on information you provided.

My area is cardiology, NOT neurology, but there is frequently an overlap of symptoms presented by patients.

Advocate and lobby for your mother, don't be rushed into any decision, but at the same time be mindful of your mother's state of being. The pain and emotions you are going through right now are excruciating, I know them well having gone thru the same with my own mother on Christmas eve a year ago.

Meg_08
Meg_08 in reply to Grant_za

Yes, being a college graduate, I look for peer reviewed documents or Medical Journal documents. I primarily have been reading the studies that have been done by medical professionals. Having some knowledge in the medical field has proven helpful while reading these.

MothersSon
MothersSon in reply to Grant_za

Thank you for sharing. I will mention these tests and Zolpidem to the neurologist and ICU team. Starting yesterday, Mom is moving her head, opening her eyes, and responding to my voice over Zoom, and recognizes my voice and face for a short while by looking straight at me. She also tracks the nurse with her eyes as I speak to the nurse from across the room on Zoom. She wakes up then dozes off and also takes big breaths occasionally. Two weeks intubated, I hope to avoid the tracheostomy the ICU is pushing now. Any suggestions?

Grant_za
Grant_za in reply to MothersSon

Zolpidem is rather interesting. I guess a bit of a accidental discovery by a local GP, Dr Wally Nel - local as in South African - where I am.If you Google "Dr Wally Nel Stilnox", you will come up with pages of results and links to further research. Some interesting things have come out of this country, most notably the 1st successful heart transplant, the development of the CT scanner, 3D doppler imaging - and plenty more.

The world's wealthiest man, Elon Musk (tesla etc), is also from our shores.

Covid treatment here for patients in a serious condition, is started with high flow nasal oxygen, avoiding the use of ventilators and the complications that go with ventilation. Not many patients are put on ventilation, even less go to ecmo. Our death rate per million is very low, and recovery rate very high when compared to European countries and the United States, where the "go to" is very often ventilation, coupled with lower recovery rates.

Our public health care system is in tatters, although private care equates with the very best offered anywhere in the world.

This disparity has caused medical professionals here to think "out of the box". In my travels to international conferences, I have often been surprised at the institutional and binary mindset of many medical practitioners out of Europe and the USA. By no means are these people incompetent or less skilled, it would just appear a standardised "cookie cutter" mindset has taken hold.

This is where input and questioning by patients and their families can play an important role in the treatment of patients, and exploring other options.

This brings me back to Zolpidem.

Each patient is different, each having specific needs. Zolpidem may be suited to some, but wholly unsuitable for others. Many patients on secondary oxygen support are already on a range of sedatives specifically appropriate for the purpose. The addition of something like Zolpidem would be completely inappropriate.

But as to the "trachy", the less sedation the better. Full intubation and the sedation that goes with it, is usually better avoided by a tracheostomy , which is often considered a step down in the right direction.

Take a look at the posts of others regards tracheostomy. But above all the physicians treating your mom would know the best course of action in the treatment of your mother.

We often 2nd guess the doctors thinking they don't care. While sometimes they may lack a warm bedside manner, ultimately they are looking for the best outcome for their patients. Any doctor not performing, will soon get a bad reputation amongst his peers, leaving his career in ruin.

If ever you have doubts regards a course of treatment, get a 2nd opinion.

MothersSon
MothersSon in reply to Grant_za

Right. Thank you. I think a compelling idea is Biphasic Cuirass Ventilation as an option to avoiding the invasive trachy in order the wean off ventilator. BCV can be on while still intubated. Then trials off vent can be tried, followed by or in conjunction with HiFlo Nasal Cannula and BiPap/Avaps. Trachy seems to be pushed way too much and with so many complications especially bleeding and a lot more. Plus NG Feeding Tube through nose can be then used instead of invasive G Tube in stomach with non invasive breathing. Trick is to avoid more sedation and more lengthy wake up after repeat sedation for yet more invasive procedures, like a trachy. Sedation is hard on older people as it takes a much longer time for the body to get rid of. I think our role in taking care of loved ones it to become informed and research the alternatives so we are not sorry we did not do so down the road when it is too late.

Meg_08
Meg_08 in reply to Grant_za

Oh yes, Elon Musk .. pure genius in my book. I will check out the article you suggested. Honestly I read up a little on the Zolpidem. There are so many factors because my mom has other conditions as well. Her medical has proven challenging at best. We are still trying to get rid of the infection. The Neurologist defined it as encephalopathy. Well, that covers a broad range of problems/diseases. Having access to her patient portal allows me to see all reports, procedures, blood work, etc. on a daily basis. It’s a blessing and a curse if you ask me.

Grant_za
Grant_za in reply to Meg_08

Zolpidem would appear to be an option to explore in a stable patient, not one undergoing treatment for multiple issues

My husband took six weeks to begin waking up after they stopped sedation. He is now blinking, tracking and moving his head.

Meg_08
Meg_08 in reply to lynnmarr

Fantastic! How long has it been since he started waking up?

lynnmarr
lynnmarr in reply to Meg_08

9 days. They say waking up is not a light switch, it's a dimmer switch. He is now starting to comprehend slowly what is happening.

Meg_08
Meg_08 in reply to lynnmarr

That’s exactly how I have felt when the doctors told me there’s no sign of brain damage other than she’s not waking up. It was reported to me today that she opened her eyes on her own (no stimulation) and was looking around the room for a few minutes. Then went back to sleep. Part of me thinks this is “wishful thinking” as the doctors have told me. If you don’t mind my asking, what caused your husband to be sedated?

lynnmarr
lynnmarr in reply to Meg_08

Covid pneumonia intebated on ventilator. Finally he was Trached on 12/27. They stopped high sedation a few days later, but then he didn't wake up. Totally on high sedation for 52 days. Doctors wanted me to pull the plug a number of times. I brought in another doctor who helped through blood thinners to clear his lungs from blood clots and pneumonia. Then got him trached. I then moved him to another hospital where his primary doctor practices. The other Doctors gave up on him. I Praise God for answering my endless prayers.

He is still on ventilator and I am hoping he can get off soon.

Meg_08
Meg_08 in reply to lynnmarr

That’s amazing! He’s so glad to have you advocating for him. I’ve seen many times doctors overlook one little detail that can make or break a problem. I’ve seen reports where Covid patients are taking a lot longer to wake up and they are unable to explain why. I wish you all the best and hope he makes a full recovery.

I just wanted to give an update. Today, after 40 days of being off sedation, my mom woke up! She’s fully awake, alert, showing facial expressions/emotions, tracking and is responding to our voices/noice. During our FaceTime she kept looking around and then back at us when we spoke. She even tried to mouth something a few times. I’m certain she’s trying to understand what’s going on as you all have posted this experience before. Your guidance is going to be so instrumental in the coming days, weeks, and months.

When the doctors tell you there’s only a 10% chance of survival, don’t give up. Our families need advocates for them. Pour yourself into research articles as some have mentioned above. Educate yourself. Ask questions. Doctors are human too. In a world reliant on probability, being the unprobable outcome. And as a caregiver, the most important part is taking care of yourself.

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