Covid: Please help! Doctors ready to call if quits

[GeordieCMD]

My dad has been on a ventilator for three weeks today and has had a trach for 12 days now. My question is that the doctors think my dad may have irreparable brain damage although his CT scan was normal. His EEG showed generalized slowing but he was on a small dose of precedex during the test. The most concerning thing for them and the reason they feel grim is that he is not reacting to stimuli, even pain if they need to stick him and it's quite painful. He has his eyes open but just stares and does not follow them or move his arms or legs so from a clinical point they feel this is indicative of brain damage and asked us if dad would want to live like this. We are not ready to give up but it seems the doctors have very little hope.

[Color27]

My mom has been on a ventilator for 31 days. She had a stroke 2 weeks ago and the doctors were talking to me also about quality of life. She had brain activity on EEG but the CT scan showed the stroke affecting her cerebellum. They said she would need an MRI to confirm the extent of the stroke. Is it possible for them to do an MRI on your dad? At the hospital where my mom’s at they said they can’t because she’s still covid positive. My mom responds to painful stimuli but she’s doesn’t open her eyes and she doesn’t move. She had a trach done 3 days ago and scheduled for a G tube today. Hang in there. I felt the same way when the doctors talked to me about placing her on DNR and hospice but my mom’s still fighting. She’s 76 years old but healthy prior to this. She told me she would not die of covid and I’m holding on to that. I’ve read a lot of miracle stories here in this community and I’m hoping and praying for the same for us.

[Ferham]

Hold on to the positive thoughts, this group is full of miracles . When they are ventilated they are using very strong medications, it is taking a lot longer for many vented patients to "wake up". I would ask for an MRI and ask can you sit with him or send in videos so he can hear your voice . Sending lots of positive thoughts and prayers .

[Sepsur]

It would appear that many Covid patients are taking an extremely long time to properly come around. I was in an induced coma for 57 days & ventilated over 70 days. It took me 11 days to properly come around.

Because of hypoxia, they feared I would be brain damaged, so I had CT & MRi scans which revealed no damage. I was also suffering from hypoactive ICU induced delirium - where you appear very unresponsive.

Thankfully no one gave up on me and after 90 days I left ICU.

[GeordieCMD in reply to Sepsur]

Sepsur,

The good news is over this past weekend my dad started following commands! He has had a CT scan of his brain which was normal but an EEG while he was still in a coma and on Precedex showed some mild slowing. I was able to see him for a half hour on Sunday and I asked him to blink his eyes if he knew who I was which he did. My sister couldn’t get him to do the same for her the following day. I asked for an MRI but the doctors said he wouldn’t reveal whether he has hypoxia. Do you happen to have any insight about this? Thank you so much for all you do for the people on this sight! Your posts have been a source of hope for us all!

Carmen

[Sepsur in reply to GeordieCMD]

Hi Carmen

I know of two people who were classified as having hypoxia ( myself being one of them) both of us have largely been able to live normally. My cognitive ‘brain fog’ issue at present is down to the type of chemo I’ve been on for the last 9 months. My friend is perfectly fine 2yrs after ICU. Both of us have had numerous CT & MRi scans that have revealed no damage. I’ve also had PET scans due to a fear that my leukaemia had transformed into a more deadly and aggressive lymphoma or that it had jumped the barrier into my spinal cord & brain because I had seized & knock myself out earlier in year. Anyway, although it had transformed, it spontaneously transformed back 12 days later. ( pretty pleasing result - the other has a median life expectancy of 6-12months 😀)

PET, CT, MRI scans revealed no damage - which maybe why your Doc doesn’t think it’s worth it.

In my case, I think my thinking processes have been changed by ICU admission but I wouldnt classify it as ‘traditional’ damage.

I’m out of breath when exercising or doing stuff that’s strenuous.

( classic hypoxia)

I forget names, places, words & appointments- I forget how to do things - I struggle to learn new processes. My social filters can be blunt on occasion - equally, Im not as stressy as I’ve always been ( internally) - I might not have shown how worked up I am in the past - now, generally, I’m more chilled. I also forget a whole lot of stuff that maybe doesn’t need remembering.

I wish your Dad continued positive progress - it is really such a long haul & my family has weathered the storm with a fair amount of damage on the way. Make sure you & your family look after yourselves at present, you will need all your stamina for when he gets home-

[GeordieCMD in reply to Sepsur]

Thank you so much. We are at the hospital waiting to speak to a neurologist now. Hoping for some positive news.

[FamilyHistorian in reply to GeordieCMD]

That’s good news that progress is being made. Just remember everyone is different! I came round when I was ready.

[GeordieCMD in reply to FamilyHistorian]

Thank you so much. We are thankful he is coming around a bit and hoping it keeps improving.

[FamilyHistorian]

I am 72 and had pneumonia, possibly sepsis and a heart valve replacement. I was sedated/ ventilated with a trachy for 6-8 weeks. My family was called in several times because I wasn’t expected to make it. I just wasn’t ready to come round. Once I did the hard work started I had lost a tremendous amount of weight include muscle (from everywhere) I had to learn to swallow, talk, eat and walk. I came home mid March and I am making steady progress physically with a variety of chair exercises mentally improvement is much slower the trauma, delusions and hallucinations are unbelievable.

Take care of yourself.

[Feelingbetternow]

Hi GeordieCMD

I was on maximun doses of Fentanyl, Precedex, propofol and all kinds of sedation. The doctors put me in fluid overload and I developed pulmonary edema (fluid in my lungs). I could not breathe. I went in with abdominal pain and mild pancreatitis. I did not require fluids but they fluid bolused me anyway. I did not need a CT of the abdomen with contrast since I told them the diagnosis and cause (hypertriglyceridemia) of my pancreatitis. By day three I was unresponsive and had a Glascow Coma Scale of 3 (either you’re in a coma or dead). Then my husband arrived. They never told him about my condition. I must have heard him or felt his presence because I was kicking my leg off the bed and shaking my head “vehemently no.” After 9 days on the ventilator they realized they made mistakes. One of the ICU attendings decided “let’s do it” and they extubated me. My kidneys were failing, I had ventilator-acquired pneumonia, fluid everywhere, antibiotic-associated GI problems, my lipases were trending upward and were twice what they had been on admission. I could not talk, walk, swallow. It took a day to wake up and even though I was delirious I knew I had to leave or I was going to die.

There was only one thing they did not screw up and that was letting me leave AMA. My recovery has been tough but I do feel fortunate I am alive. I guess neither me nor my husband ever knew how sick I was because they didn’t tell us. I flew back home the same day and quickly desaturated in flight. Sometimes I wonder if they were hoping I would die.

It has taken me so many months to make sense out of my records. They intentionally witheld records and eventually released most of them after repeated requests.

I have had to see many specialists since February to follow up on my medical issues. The majority were really misinformed and just did not have the knowledge to practice with reasonable skill and safety. I have a strong mistrust for physicians, nurses, pharmacists and social workers/case managers after reviewing my records.

The more specialized and the more “experience” they have, the more likely they are to make errors. I think this is because they rely on knowledge that may have been the standard decades ago and do not realize that there are updated, peer-reviewed, evidence-based guidelines to guide treatment to promote positive patient outcomes and prevent errors.

I guess no one is perfect but a patient should have the expectation that by going to the hospital they are going to get help and not be killed.

My father was on a ventilator twice in 2006 and 2007. The first time they didn’t think he would come off the ventilator but he did. The second time, he went in with another acute exacerbation of his COPD, was complaining of back pain for an unrelated problem, they gave him morphine and he stopped breathing. He was placed on a ventilator and within days you could tell he was not going to make it. This time he was so edematous and even coded a few times. His EEG also showed generalized slowing. His cardiologist came in when he suddently started coding again. This time the cardiologist recommended we let him go. So we did.

[geewisdom]

Don't give up on your dad, because he would not give up on you. No matter what the situation if your GUT is telling you NO, well then you have your answer. I'm not pushing religion on you but if you are a religious person, kneel by your dads bedside with a bible and PRAY, call out every healing scripture, ask GOD for his guidance and for GOD to grab hold of the wheel where your dads life is concerned.

Man can never do what GOD can!

[mylko]

i was on a ventilator for 6 weeks, and a trachea in for a couple of weeks; when i first started to be weaned this was my response according to my family. the consultant told my family to be prepared to let me go as they thought i had irreversible brain damage due to repetitive seizures and inability to communicate by anything but blinking. i had shadows and leaks on my brain, but the doctors couldn’t tell what it was from. anyway, wind forward 4 months and i’m walking / talking as i used to. my memory & swallow are very damaged (as i have ongoing amnesia) but the reality of what the consultant expected was far off the mark. stay positive xxx

[GeordieCMD in reply to mylko]

Thank you so much! Your words have given us hope! All the best to you! xxx