Dad off sedation as of last night...not really responding

[Crazydoglady87]

I posted a few days ago about my dad who was admitted to ICU (4 weeks ago today). He had pancreatitis caused by gallstones which then led to septic shock. He’s been on a vent most of that time except for a 12 hour block one week after initial admission but obviously had to be re-intubated. He had a trach placed one week ago and late last night, they were finally able to turn the sedation off (propofol, still on fentanyl) without agitation or any negative effect on his vitals. He did spike a bit of a fever which has since come down, he has pneumonia as of last week and of course the pancreatitis is still there. As of this morning, he hasn’t woken up. He grimaces in response to pain and will open his eyes every now and then (sometimes when they call his name or when they are rotating him) but not much other than that. Is this normal? I know he’s been sedated for a while but should he be responding more? They did do a brain CT and didn’t see anything to make them think brain damage but will consider a brain MRI in the future, if needed. During his first few weeks, he was following commands and he even spoke those 12 hours he was off the vent so it’s only recently that he hasn’t responded. They did tell me he’s pretty weak so we just need to wait and see how he wakes. But I could use some inspiring stories if y’all have them.

[Sepsur]

Hi @Crazydoglady87

I know everyone is concerned by each stage of the critical illness journey and it is incredibly stressful, no.1 because you are totally powerless to influence the outcome, it’s all in the lap of the gods, in this case your Dad & his amazing ICU team that have got him so far.

You use a term ‘ not really responsive’ which at least means he’s a bit responsive.

I don’t know your Dad’s history so I can only tell you general stuff. ICUsteps produce a great guide on what to expect : icusteps.org/assets/files/t...

There are lots of influences as to why someone takes longer to wake, if you have kidney issue, it slows down the rate in which the body rids itself of sedative, your Dad may have a high or low tolerance to sedative and needed to use more or less to knock him out, certain procedures need a deeper level of sedation ie proning. And everyone is. Different. I took 11 days to wake fully. For quite a while I was experiencing delirium, so I don’t know when I appeared “ awake”.

[Crazydoglady87 in reply to Sepsur]

Thank you for your reply! My dad's kidneys had failed/begun to fail when he went in initially but over time, they have improved and he never needed dialysis. Last I heard his creatinine level had gone down to 1.7 after being over 4. In other words, his kidneys are not functioning at 100% but they're satisfied with the downward trend. Maybe that is affecting the rate in which sedation leaves his body. I hope he comes around soon and gives them more to work with.

Do you know how you were responding those first 10 days before you fully woke up? My dad responds to pain and will open his eyes every now and then when they call his name or move him around but does not follow any commands.

Your story amazes me. I can't even imagine how thrilled you and your family must have been when reality set in that you were going to make it. I daydream of that constantly with regard to my dad.

[Sepsur in reply to Crazydoglady87]

I was like for Dad 😊

[FamilyHistorian]

Hi crazydoglady87

Last December (‘19) I was admitted to Birmingham QE from our local hospital. I was sedated / ventilated just before Christmas and then had a heart op. I stayed in this state for nearly 2 months and then they gradually removed the sedation although did have keep reseating me. As far as they were concerned I would come round when I was ready. Which i did! I didn’t cope well with intubation so had a trachy just after Xmas. Even after 4 weeks he will have lost weight and that is not just fat or whatever but also muscle from all over the body so he will be week. I had trouble moving my arms and legs let alone sit up or walk. I came out mid March and am steadily recovering.

Take care of yourself

[LeopardGecko]

Hi,

I can't really comment on the sedation side of things as my husband came round quite quickly but just wanted to let you know that he went in to ICU in early August with Pancreatitis. It has been a very slow journey with ups and downs but he made it to a ward a few weeks ago and we are looking forward to him moving to a rehab centre in the next week or so. I suppose I just wanted to let you know that it can be a very slow process and the weakness and muscle loss also takes its toll but there is hope.

Look for the positives 🙂 and if you have any questions about pancreatitis feel free to message and I will do my best to answer from our experiences.

[Tootle2929]

Hi I’m so sorry you are going through this. I can’t comment sorry on the responsiveness but my dad is currently in hospital with something very similar. He has an infected gallbladder and pneumonia. The gallbladder needs removing but he isn’t well enough. He was also in ICU and now in a ward. He’s still very weak. It’s awful as no visits allowed. 5 weeks tomorrow since he was admitted.

I would write down all your questions and keep asking the medical staff until you get answers. It seems a good sign that he is responsive to pain. Not sure where you are in the world but ICU staff are amazing at what they do.

Take care

[Jbujanda82]

My dad was in ICU with a ventilator as well. When they finally stopped sedation and just kept him on fentanyl he would open his eyes, turn his head when he heard his name. But it took him more than a week to fully come around, we would FaceTime him during this time and he doesn’t remember any of it. He says when he first finally woke up he couldn’t even remember his name. I believe the fentanyl keeps them pretty out of it. My dad also had kidney failure during his stay and doctors did say this was why it took so long. Now after almost two months of hospital stays he is home and working on his rehab. Stay positive, look at all that he has been thru and how far he’s come!!

[Crazydoglady87]

Thank you so much to everyone who has posted and helped me keep hope alive! Today has been a GREAT day! My dad is still stable and becoming more responsive by the day.

I FaceTimed with him today and he tried to mouth some words to me. I explained to him that everything at home was ok, bills were paid, my mom and his dogs were ok and that I was staying at the house with mom and he mouthed "ok sweetie". I thought I was crazy but the nurse confirmed it. She then said "that's your daughter. can you see your daughter?" and he nodded!!!! I told him that b/c of COVID restrictions I can not be at the hospital every day and ended with "today is Saturday but on Monday or Tuesday, I will be able to visit and spend some time with you, ok?" and he nodded again. I am thrilled that he is making progress and I hope he continues to progress as time goes on.

Thank you again for all of your messages and congratulations to you and your loved ones that have recovered or are on the way to recovery!

[DrARDS in reply to Crazydoglady87]

Amazing news! So pleased for you 🙌🏾