Uncle not waking up

[Melanieyac]

Hi everyone

My uncle was taken into icu as we found him dazed and confused on the 20th October so it's nearly day 13.he had sepsis then multiple organ failure he was sedated on the first day then left under sedation for majority of the time was on ventilator and had sedation stopped but 4 days in no sign of him waking up so he was re sedated taken for a full body ct scan all normal so he had a tracky fitted and again had sedation stopped he is opening eyes but looks like he's seeing things that aren't there and we are no good at lip reading and he has no strength to write things down he's not really responsive and he keeps moving his jaw from side to side.hes kidneys are now working he is only on 30% ventilator but he has a constant high temp that the staff in icu have given up trying to find out why nothing even showed up on ft scan he is a very overweight man so I guess this goes against him as they keep telling me but i would really like to know what to do I'm so worried that he has lost his mind because he stares up at ceiling and seems to move he's jaw from side to side is this withdrawal from sedation and sometimes he obeys command then he goes back to sleep 2 secs later comes round and stares into space it's been 2 days now and no sedation how long can it take or did it take you I'm soorry to vent guys but I'm so scared thanks in advance

[Luckyone]

Hi Melanie,

Having been in the same situation as your uncle I can fully understand your fears, my wife and family went through a real roller coaster ride when I was in ICU.

I spent 19 days on a ventilator before having a tracheotomy as I was so unstable, I had 53 days missing which were full of some of the most scary nightmares & hallucination, My wife kept a diary of those missing days where at times I was awake and communicating with my family by mouthing words but I have no recollection of any of it, it was like being in a virtual world like the film the Matrix, unfortunately the drugs used to save your life & the sedation drugs can make you believe you see all sorts of things and is quite common with ICU patients.

It can appear very frightening seeing a loved one in this situation but don't give up hope as the drugs can take time to clear the system.

You should also be aware of psychological problems once he has recovered as a near death experience effects over 50% of ICU patients, some hospitals have the ICUsteps booklet which can answer some of your questions, it is also available from the website for free download, icusteps.org

[Melanieyac in reply to Luckyone]

Thanks for your help its just a really scary process its day 3 of no sedation and still not fully awake some days he is and tries to talk then sometim s he just looks straight through me I just want him back but I know time is everything so glad I found this website xxx

[Melanieyac in reply to Luckyone]

He passed away today but thanks so much for ur reply as u can imagine we are numb I wish u all the best with your recovery xxxxxx

[Luckyone in reply to Melanieyac]

I'm so sorry to hear your uncle passed away, my deepest sympathy goes out to you and your family at this difficult time.

Bill

[spaceoutandshoegaze]

Hi. I really hope that each day brings some improvement for your Uncle.

From my personal experience (I was vented for pneumonia and severe asthma) I spent 14 days after the sedation was weaned off, completely incoherent and behaving very strangely. I will be honest and say a lot of that was spent having nightmares and the few memories I have are not nice. The medics thought I was brain-damaged but it was just infection and sedation meds taking their time to leave my system.

It was a long road to recovery with lots of good nursing and rehab - but I am now better and living independently. It may take time to have your Uncle back as you "know" him but there is hope.

I echo the comments of others emphasizing the importance of keeping an ITU/post ITU diary for your Uncle. It helps more than I can say.

I hope there is better news soon for you and your Uncle; and that this stage is worse to look at than to experience.

Let us know how he gets on if you feel able. Thinking of you x

[Melanieyac in reply to spaceoutandshoegaze]

Thank you for your kind words. It's currently day 5 with no sedation and he has followed a few of the family commands. However he has a temperature of 40 and his heart rate sometimes can go as high as 186. Everytime we feel we get somewhere with him something else seems to go wrong now they are talking about doing a lumbar puncture tomorrow morning. Any advice would be greatly appreciated.