Very concerned for my mom. She had carotid artery surgery and stopped breathing during surgery. We feel like there may have been a issue that's possibly been kept from my brother and me. That night she died and they brought her back. After a day of that I had my mom transferred to a very well known hospital for better care. Mom has been on the ventilator going on a week and a half. Yesterday they took her off of it. During they would have to sedate her extra because she was trying to pull her tube out if her throat. I haven't been able to be with my mom due to covid restrictions and I finally got to see her over zoom today. My mom will NOT talk. She failed her swallowing test miserably and almost has a child like personality. Her cognitive function is there kinda. She can nod and shake her head and knows who I am. Waiting for MRI results to see if there's damage. It was so hard seeing her like that! I've read and been told lots about ICU delirium and I'm hoping this is all it is. The results have to be read by the dr. And I'm just so sick over it. I figured she would at least try moving her lips or even a whisper. I'm devastated at the moment. Any thoughts would be appreciated. I feel alone with some of the answers and this little forum is just heaven to have come across finally after difficulties looking for answers.
Thanks,
Courtney
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Courtmsorrell
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You can see more about me in my profile. I had heart surgery pneumonia and sepsis back in December’19 I was ventilated and sedated for nearly 2 months for all that time and after I had a trachy I was very agitated and kept pulling tubes etc out. I failed my swallowing test several times and was fed by tube for my whole stay. Obviously I couldn’t speak. Once I came round I was given a mechanical voice box which I could use for short periods. It sounds as if there is delirium involved. The hallucinations we suffer are horrendous and for many they are different with common themes.
Once home I changed, I have my voice back and now eat solid food with a few exceptions. I had a distinctive laugh which has gone but I do have a laugh! My sense of humour has changed from wicked to evil. My personality has some what changed - I don’t really care about what I say and whilst my brain tells my mouth to be careful it rarely takes notice🤐
I would also say that I got very frustrated by people not understanding what I was trying to say. It was very clear to me but obviously not them. The same to writing my words were in the wrong order spelt back to front and sometimes in another language all very clear to me but no one else
Thank you for your response I am going to share this feedback with my brother. So amazing to hear from you all that has been th re through this!! Bless you
If it is ICU delirium that your mother is experiencing, her reticences maybe down to this. I had hypoactive delirium ( as opposed to hyperactive delirium) which meant I was rooted to the spot in my dreams - and apparently in reality - I was almost catatonic. Everyone was worried I was brain damaged ( yes I have been cognitively affected by critical illness) because of hypoxia- and degree of unwell ness. My CT scan of brain, showed no damage. There is no real normal when it comes to ICU, the doctors often say “We would expect such and such to have happened by now”, but they also told my wife on many occasions I wouldnt survive the night, come in and say your good byes- obviously that didn’t come to pass.
Thank you so much for your feedback!! Got results MRI was remarkable no sign of brain damage. Doctors are hoping it is the delirium but would still like to see if there's anything extra contributing to her poor mental status. They said she's a bit more unusual on her mental status. Most want to drink water and she wont yet or she wont clear her throat... which is collecting phlegm. From not clearing her throat and having a mental status like shes in could lead to oxygen deprivation in which a tracheotomy would be inserted. Still so very thankful of the MRI report! Just hoping my mom has what you said, just maybe that it's a bit worse than most. Bless you so much for responding.
I didn’t have heart surgery but I was in ICU for 3 weeks on a ventilator with Sepsis and ARDS. Delirium which is super common in ICU can have a profound effect on a person, it is psychology traumatising on top of the physical trauma.
After having a tube in your throat most people can’t talk and this can be tough to deal with and maybe your mum ‘knows’ she can’t speak and that’s worrying her. Have they tried a touch board with letters or words to see if she can communicate that way. That was how I started out when I woke up.
The trauma of the tube in your throat and the length of time it’s in can effect your swallow too so it’s not that unusual to fail a swallow test.
ICU can also have a huge effect on your personality as it is a massive trauma and your brain does what it can to cope but as someone else said usually there is a permanent change (not always a bad thing. I am more social now and less worried about what people think of me).
Having someone in ICU is extremely scary and takes a huge toll on you. I hope that you are doing ok and have a support system that is helping you cope. The trauma you are going through as well is as profound. My family was always told, ICU seems scary when you don’t know what’s going on but for the staff it’s there norm they know when things are not right.
I hope things improve soon and hope this finds you well.
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