Wanted to write to get a bit of solace and stories from someone who experience similar situations.
My dad had throat cancer surgery 14 days ago. He is ventilated as he got pneumonia and was very agitated when they tried to remove the sedative, so he couldn't breathe. They did a tracheotomy just today. He also has fever and possible pancreatitis (the doctors are not sure and the don't understand why). He doesn't respond to external stimulation and orders, he just moves a bit (head, arms), I am not even sure if he understands when me or my mom are there. He also has problems with clogged arteries and cuts in his arteries (?) due to his cholesterol levels and problems with the kidneys.
They did a CT that didn't show anything. They will do a eeg this Saturday. He is 69 and I am so scared he won't make it.
I try to go visit him and talk to him a few hours per day (me or my mom), I feel guilty if I don't go more but I don't think can stay there the full day.
Sorry if I made any mistake or didn't explain properly, English is not my first language and medical terms are difficult.
Thank you.
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Nerwen88
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Hi @Nerwen88 - everything you have said is totally clear - don’t you worry.
My family were encouraged to spend time at my bedside - here in Uk that is still not possible for most. It was all about helping me to orientate as I was coming out of sedation, familiar voices etc. They put photos up in my room and stuff. Put on a radio station I liked - got my family to talk to me.
It can take quite sometime to wake from sedation, for some longer than others. There are many factors at play. ICUsteps has produced a great guide on what to expect.
Thanks so much! Today I went to visit him and, despite the situation being the same (the pneumonia has improved slightly) he looked better and was more "responsive" and moving. I know it doesn't necessarily mean anything, but I feel a bit better.
Just been in to see my wife and they have given her short time to live ,I am in bits as is my daughter ,nothing I can do other than stay with her as long as is allowed
Wish you all the best and thanks for taking time to reply
I’m sorry to read this @Stephent2 - we all have been given pretty desperate prognoses here - maybe there is the possibility that your wife too will defy the odds.
I wish you & your family well under the circumstances.
I am so sorry to read this 😥. What are the options they gave you? My husband had covid19 on March 24 and he was admitted to the hospital on 10 April and many times they've told me that he wasn't going to survive but he is still fighting.
I'm so sorry to hear this, as others have said, they have been told the same on many occasions and have defied the odd's . Sending positive thoughts and prayers .
So sorry to hear this but don't give up hope, so many people on here have had similar news about loved ones in ICU and they have pulled through and I really hope and pray that your wife does too🙏🏽🤞🏼
I’m so sorry to hear your dad is doing so poorly right now, but don’t lose faith that he will wake up. My mom was unresponsive for days after having sedation removed (and also dealing with viral meningitis). The odds were stacked against her as she is also immunocompromised and has acute kidney failure; her doctors weren’t sure if she would ever wake up. But after a week of sleep, she started opening her eyes when her name was called. And two weeks, she is now more alert and able to follow simple commands. Still gaining her strength everyday, thank God! Things like this can be absolutely discouraging and upsetting, but do try to remain positive. It’s good that you are able to go visit him! We weren’t able to visit my mom until very recently due to COVID restrictions, but her doctors think having family around always helps. Spending prolonged time in the ICU is mentally exhausting and disorienting, especially when coming out of sedation. Although your dad might not be awake, it’s certainly possible he can hear you. Sometimes things just take a little longer for certain people xx
Thanks so much for sharing! I'm happy to hear your mom is recovering.
We are visiting my dad every day. They now removed the sedative (only morphine), he is very agitated. I think he hears me but can't clearly understand anything yet.
We keep finding some pre-existing conditions we were not aware of (now they told us he has several small cerebral ischemia) and he still has fever pneumonia etc, but I am hopeful!
Yes, I believe your dad can absolutely hear you! When my mom was unresponsive, my grandma would still talk to her and play some of my mom’s favorite music or tv shows in the background — sounds that she is very familiar with. I think it’s wonderful you’re able to visit everyday. They also kept finding pre-existing conditions for my mom as well, but the key is to remain hopeful, just as you said!
Thank you! I talk to him every time I visit him and play songs of his favourite singer.
They had to put him on sedation again as he was too agitated.
It's very difficult when you don't have any response, sometimes you feel it's useless. But I hope it's not and I want to do everything I can in case he can hear us.
I am feeling a bit down today, but it will be better.
Yes, I understand exactly what you mean. I feel so helpless sometimes. I wish there was more I could do for my mom, but I have to remind myself I’m doing the best I can right now. You’re doing your best, too. I know we don’t know each other, but I am proud of you! You’re doing a great job, and I know both of our parents can come out on the brighter side of things! xx
I’m terribly sorry to hear what your Dad is going through and in turn what you and your family are now dealing with.
I have worked in oral and maxillofacial surgery as an SHO and seen many throat cancer patients, both in theatre and out patient clinics. I have also had to go through my Dad recently being in ICU under prolonged ventilation that also required surgical tracheostomy.
Even in a well patient with no history of throat cancer, I’d have said a trachy is often a useful aid to help wean them off prolonged mechanical ventilation.
The fact that they have had throat cancer surgery would suggest this (a surgical tracheostomy) was inevitable and you should take great hope that they have been well enough to even have this procedure, as it means the doctors have hope they can provide him with a decent quality of life and wean them off mechanical ventilation.
The tracheostomy will likely remain for sometime rather than be quickly removed, but this was quite standard from the OMFS/ENT patients I would see.
Please keep the faith and stay positive, whilst the doctors do their level best to wean your father with whatever skills the greater powers have bestowed upon them; the rest is destiny.
The other comorbidities you mention and the fact there is no major pathology evident on the CT scan would suggest it is just a waiting game before the sedatives come out of the body; which in turn will lead to enhanced cognition/neuromuscular activity.
Best wishes and please reach out on here or via DM if you wish to.
They took him off sedative yesterday (only morphine) but he is very agitated. I read that sometimes in this condition you have nightmare / allucinations so this might be what's happening
They actually did a tracheotomy, not tracheostomy, which I understand are slightly different. Doctors say he is still breathing on his own so they might try to remove the ventilation in the next 3-4 days.
He still has fever pneumonia etc, but I am confident he will start waking up in the next week <3
Don't beat yourself up about not spending more time at the hospital, critical care is hard on the family and you need to keep your strength up for your dad and mom 🙏
Little update, not much has changed. They had to sedate my dad again because he was too agitated. Still no sign of any connection with the outside, no response to orders etc.
Physically he is the same (fever, pneumonia) but the mental part is the most worrying one.
Little update. Today my dad was a bit better (no fever and pneumonia improving). He also is on minimum ventilation, he mostly breathe on his own.
I am very excited because I really think he heard and recognised me today.
I asked him to close his eyes if he heard me and he did. Not just blinking, properly closing his eyes. After he looked at me and I told him "Hi daddy!" and he smiled! He also smiled later after I said "I love you."
He never smiled before and was only in these 2 occasions so I really think he recognised me.
The bad news is that he is very very agitated and they will put him again on sedation if it continues. He is a very agitated man (the kind of person that can't sleep and just drives around at 2am) so I know he is frustrated that he has to stay laying there.
This is good news. I got agitated at night and didn’t / wouldn’t sleep at night because I was afraid that they would do something to me and I had to keep an eye on them or omit to care for me. I didn’t have the same problem during the day!
Have you tried the photo graph board. One of the pictures was the whole family (5) their partners and 12 grandchildren and 2 dogs & cats. My wife asked the nurses to question me about these pictures. It was really difficult so I turned it round and would tell then about one of the individuals. BUT be aware he might ask who they are in the first place don’t worry about that. There may be a lot he doesn’t remember
We haven't tried photos yet,I don't think my dad is at that stage. Yesterday was with him for about 2 hours and I believe he was "there" for maybe 15-20 minutes. He also can't talk because he has a trachy.
But I will definitely try the photos soon if he continues to improve!!
They may try a voice box for a short time just to give him a voice! If you try to get him to write notes or use a pointing board with words don’t forget his arms are likely to weak, he may write back to front and whilst he will know what he has written you won’t and he may get very frustrated and cross with you it’s “normal” what ever that means
I am glad to know that your father is now doing well. I was reading alll your comments and responses.
My father in law is going through with quite similar scenarios.
Today they did the CT but it wasn't conclusive for them.
They took him for MRI and EEG was also , the reports will come tomorrow. I am just hoping there are no abnormalities in his reports as already he is going through alot. (You can read my story and comment whatever you feel can guide me) .
It's been 3 days since he is off sedation and not able to wake up.
Also he has very low BP and he is too agitated before he was in his senses. His GCS score is 3 which is the least . The way your father did recognise you and smiled, I am just hoping at least the same way for him. 😞😞
God !! I really connected with your story and felt really good that he is not fighting alone.
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