Just spoke with mom's doctor. They were finally able to place a tracheostomy and G tube on her for feeding. He propofol has been off since Monday and despite countless attempts, they could not take her off high doses of Fentanyl. They lowered it down but then her blood pressure shot up and heartbeat went really fast with irregular heart rhythms. She has not opened her eyes yet. Only grimaces and responds to painful stimuli. Her X-ray remains the same. No improvement and she remains covid positive for almost 2 months now. Doctor was not optimistic that she's going to recover due to the stroke on top of the covid. I asked him if it could be related to being on a sedation for more than a month and reading here that covid patients do tent to wake up from a coma a week or 2 after sedation is completely stopped. She's only been off sedation for 5 days. She's hospitalized now for 49 days, 37 days on a ventilator. FiO2 at 60% with peep of 7. She also developed a fever today and she's not tolerating her tube feedings. They are not giving me much hope. They said it would be different if she takes 2 steps forward and 1 step back but said she is not showing them any improvements at all. I asked them to please give her more time. My mom could just be another critically ill patient for them but for me, she's my whole world. I love her so much that it hurts to see her suffer but also cannot imagine making that decision to let her go.
Just need to vent :(: Just spoke with mom's doctor... - ICUsteps
Just need to vent :(
If your mum has a tracheostomy I don’t understand why she would need high doses of fentanyl as it is an opiate for pain. Her reaction when the fentanyl is reduced would suggest she is in pain or her body has become used to having the medication. If this was the case then she would need to be on a weaning regime from the fentanyl. The positive covid result can come from dead covid virus cells so does not prove that she is has an active infection. Hang in there.
They put her on Percocet through G tube to help wean her off the fentanyl but since she’s having high residuals, they are not sure if she’s absorbing it. They also added Ativan and Morphine but it didn’t seem to help. She was all the way down to 50 mcg of Fentanyl for a couple hours then her heart rhythm and blood pressure went uncontrolled so they had to titrate it back up until it settled down at 200 mcg. One of the nurses told me that their other patient who is on a higher doses of fentanyl is awake unlike her who’s still unresponsive. She’s only been off propofol for 5 days tho so I’m praying she atleast opens her eyes.
Hi, that's so unfair of the nurse to compare your mum to another patient, everyone is different and they all come round at different times . My husbands BP and resp rate became erratic each time they tried to remove his sedation. Hang on in there, a trachy is a step forward, once my husband had his he slowly improved .
Not Covid related but my partner took weeks to come out of sedation, he had a stroke during brain aneurysm surgery and there were further complications, he was placed in an induced coma for 10 days. He is still in critical care now, 11 weeks later.
I hope your mom is ok, I said the whole of the last part of your post when I spoke to the hospital yesterday which is why I felt to need to reply.
Take care and look after yourself. You cannot be strong for her if you don't.
I hope your Mom shows some improvement soon, I remained static for a considerable time, neither improving nor deteriorating- isn’t that when they describe us as being “stable but in a critical condition”.
I was unconscious for 57days, it took 11 days to wake - I’d had multiple organ failure which contributed to how slowly I woke up. Dialysis for 7wks. I think that I remained intubated and then trachy fitted & removed by about day 75. I was then on less intrusive life support for a few weeks CPAP, PEEP & nebuliser.
I would view, if I was you, a trachy being fitted, as the start of this process towards moving from ICU to a regular ward.
My mom is still on 2 sedatives and is unable to wean off them. When they try to stop it she gets the rapid heart beat and her Bp drops. She is unresponsive to pain, commands, sometimes doesn’t even open her eyes. I understand you. Her doctor doesn’t think my mom will ever recover. She’s also been on a ventilator for 6 weeks. X ray not showing improvement.
My family and I have been praying nonstop for a miracle. My mom has shown improvement for us and we are very thankful. A couple weeks ago, mom was on 100% fio2 and could not tolerate any little movement as it would make her desaturate. Now, she’s managed to be on 55% fio2 peep of 7-10. Although her doctor doesn’t see the change, we do and we are so thankful for that very little progress she’s made.
Last night she had an episode where suddenly she because agitated and her saturation dropped to 70%. Her nurse said she had to be put back on 100% to have her become stable. Point is, this is a roller coaster for my mom and I believe some days are better than others. But even throughout those days where she doesn’t do good and I’m told she’s not going to survive, I know she will. I told the doctor that despite everything I’m positive she will come back. I don’t know how long this will take, but she will recover.
Positive thoughts will help you. Remain faithful although all you hear is bad news. God is good. He is the only one who can grant you and your mom a miracle. Just like your mom, there is a lot of people who recover. Doctors tent to be pessimistic because they want to see improvement by this time, but I know of people who have been connected for months and then recover. Their pneumonia left very bad damages on their lungs that is impossible to have them recover in a couple weeks.
Hopefully my moms experience helps somehow. I know reading about other people who have gone though the same stuff makes me feel like there is some norm in all of this.
My best Wishes for all of you.
Thank you again for your words of encouragement and sharing your moms update. I feel less lonely in this experience as I read about other people that have gone through and are going through the same. I have great support from friends and family but I just feel like it’s still different when you talk to people who experience it first hand.
Hello again, I do hope that your Mum has now since your your last post 16 days ago shown a little improvement. What an incredible fight she has been putting up and I do hope your Mum is still fighting to walk on those beaches with you again when she is ready. Seen or unseen my lovely. Xx
Hi, thank you for checking. My mom is finally covid negative but she's still doing the same. Not opening her eyes and only responds to pain. I have requested for the neurologist to re-evaluate her to determine the extent of her stroke since they said before the CT scan shows limited views and she would need an MRI. They finally did the MRI last friday and confirmed 3 portions of her brain that suffered from a stroke. The first in the right frontal portion of her brain is an old stroke. It is small and explains why she never showed any symptoms of it. They said it could've happened months or years ago. She has 2 new ones that they blame on Covid. Large sized strokes located in the left and right cerebellum which affects her consciousness, movement, and ability to breathe on her own. She is now on a persistent vegetative state 
Doctor said he does not believe she would ever breathe on her own or wake up to have meaningful conversations with us. We are devastated and really do not know where to go from here.
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