Hi all. New to the community. My back story is that my husband Brian is currently in Critical Care, we are on day 8. His bowel perforated and he got sepsis. From what I know they performed emergency surgery the first day and he has been in the induced coma ever since. He had more surgery on day 5 to fix his bowel which I believe went well.
They have tried three times now to wake Brian, each time they do he gets too agitated or they have a concern over his airway so they've re-sedated him. What I don't know is how many times do they try? Is it something they will do on a daily basis?
The other thing the doctors have said which makes me worry is that I have been warned "he may not be the same when he wakes up". I am guessing they are referring to the trauma both his mind and body have been through. Right at the start I asked if there was evidence his brain had been starved of oxygen and was told no, but yesterday the doctor seemed to intimate it was a possibility as his blood pressure was so low. Clearly we won't know more until he wakes up.
Getting information is really difficult, I phone the ward twice a day and have been able to visit twice but I feel absolutely helpless.
I guess my only option is to continue sitting, waiting and hoping.
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Turtle0209
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Well Turtle we are all different! I wasn’t a covid patient and spent over 2 months in ICU most of that was sedated and ventilated and my family were called in twice as I wasn’t expected to make it.
I took a long time to come round despite many attempts to ween me off. The hospital told my family that it was important that I should be stable and that in time I would come round.
Not being the same!!! They say MAY I suffered from hallucinations I lost memory from before going into icu I have no memory of my stay in icu and day to day memory is getting better. My sense of humour has changed and there are other things.
Whilst he is in hospital he is being cared for when he comes home it will be your turn! So you really must take care of your self now. They ought to be giving you more information. If you feel you are being blocked then try asking PALS for support. Their details are on the hospital web site.
ICUStepsChester hold a relatives drop in at 8 on Tuesdays on zoom and offer a tremendous amount of support. You don’t have to live in the Chester area. The contact details are on their website.
Thanks so much for the message back. I don't feel blocked as such but the hospital don't call me with any updates, I have to ring them. I have no idea if multiple attempts to wake coma patients is normal so the fact he didn't wake first time terrified me. I haven't really had the opportunity to sit down face to face with anyone at all, the chat I had with the doctor yesterday was while he was being treated so they were mostly (and quite rightly) focused on Brian. The nurses are great, but busy so I just feel a bit in the dark. I don't want to simply Google stuff as I could end up getting the wrong end of the stick totally. I'm trying to book in for a visit on Wednesday, I may request a chat with one of the doctors to see if I can get the situation made a little clearer.
I can understand your apprehension. I was put in a medically induced coma for 3 weeks with H1N1, ended up with sepsis, kidney failure, PE, PTSD...the list goes on. My blood pressure was apparently all over the place and my blood oxygen was so low that I was losing consciousness before I ended up in ICU so some type of brain impairment was possible.
I was confused when I eventually "woke up" after a couple of failed attempts. Your body has been switched off and then pumped full of drugs, it takes times to get back to feeling "normal". There are lots of ICU brochures that refer to ICU delirium and I would strongly recommend that you read those. I wasn't the same person to start off with but I would say that I am now back to 99% and my memory was shocking for a while but it is back with no issues.
There is light at the end of what is a very frightening tunnel and everyone is different but you need to take care of yourself. You may well find that he can't walk due to muscle wastage, I know I couldn't for the first few weeks needing to use crutches and then a walking stick. My sense of taste went for a while because of all the drugs and I still don't like milk chocolate or coffee! Make sure that both get some therapy as that really helped, I was lucky I was referred to an ICU Counsellor as was my family.
Make sure you have meals in the freezer so that don't have to bother to cook all the time and make sure you eat well.
DO NO USE GOOGLE for answers. Make an appointment with one of the ICU doctors for an update but make sure you have a list of questions pre-prepared as I can guarantee you will forget to ask a question you really wanted an answer to!
It took the team many attempts to wean me off the ventilator but eventually I did & came round properly 11 days later. The docs were worried I had hypoxia & injury - but I didn’t. My BP has remained low ever since ICU - which I believe is common too.
Critical illness changed my life for ever - not everything was negative.
Your husband may not be the same as he was before - delirium, muscle waste & brain fog affects some of us greatly. Time has been a healer.
Thanks for the replies... I have great news! Brian is off the ventilator and is awake. The nurse described him as very confused. I have no detail whatsover but the fact he is breathing for himself feels like a really positive step forward. Hopefully I'll get to speak to a doctor tomorrow and will get some more info. I know the next part of the journey starts now and am ready to support him through it.
hi ! I just saw your reply and am delighted Brian is awake. I was on a vent/in ICU last year. When we come round many of us are confused and suffer from delirium for some time after. I suspect this is what the doctors were suggesting to you. See this link for more info. I think it is important that families know what they are seeing and hearing. it reduces worry!
In terms of getting info, 2 suggestions. Could you request that you receive a call to you daily from a consultant or nurse at a set time? alternatively, most hospitals have a pals organisation who will represent you and your questions with medics and act as intermediaries.
My wife went through hell for all the same reasons you are. In hindsight, It would have been great if she had some idea as to what to expect when i returned home. You may know ICUsteps who are charity who support ex icu patients and their families? see link below for info.
I run a zoom group for icu patients or their families. You are very welcome to join our meetings. next one is next wed at 7pm. If you want to join, please send me your email by DM & I will send you a link to meeting & info. ICU steps Chester also have a group who do same and have a dedicated group for family who meet on a Tuesday. Zoom means it doesn't matter where you live!
Finally, if you just wanted to chat , I am happy to do so. best wishes, Pete X
Thanks so much Pete. The delirium is definitely better, barely there at all now which is great. Brian gets really tired but is making good progress. He was able to stand (albeit using a frame) by himself this morning. The one thing I can't get a handle on is how long he's likely to be in hospital for... I know it is hard to assess but I need to make arrangements for time off work for when he does come home. I would estimate at least another 10 days or so but some kind of idea would be helpful. I haven't spoken to a doctor for well over a week, so all my updates are coming from Brian himself. Thanks for the heads up about Zoom etc. I do a boxing class on a Wednesday and have found this to be a massive stress relief! I know it is there if I need it.
the boxing sounds good! best wishes. If i can help you with anything let me know? For me to get out I had to demonstrate no delirium, no temp, ability to walk a few steps and home was safe. I asked the dr's the criteria prior. I suspect they will not want to keep him in for longer than is needed. best wishes and don't hesitate to contact me if i can be of any help. regards, Pete
Hi TurtleYes it can be totally normal to try and wake a coma patient several times. You can also get post coma delirium which is a bit like hallucinations due to the trauma of being sedated. It can also take a long time to fully “come round” my dad took about 10 days to be “awake.” Even then he wasn’t himself but was delirious. He doesn’t remember any of it. He woke and was very aggressive and was convinced people were trying to kill him. Again, weird but can be normal.
In terms of talking to the hospital tell them how you are feeling and ask if the consultant can ring you as you are worried. Ask them to talk you through what’s happening and expected outcomes. Lastly, please remember that they can do amazing things in ITC but medicine is not an exact science. Be hopeful as many times patients can recover and be ok again. Take care of you too. Sending best wishes to you.
My husband just said that they had 4 or 5 attempts with me. I was thrashing around too much and tried to pull my breathing tube out of my Tracheotomy. I have no memory of it😳😳 i believe it’s common 👍
Hi I was in icu for 3 weeks last February. Not covid! They finally brought me around in the 3rd attempt with a drug they use for adhd. It’s a very traumatic experience as I remember bits from the previous times. I think it’s every 3 days they can try again. Keep positive 👌
Got a call this morning, the boy is back under sedation and on the ventilator again. He became very distressed overnight, they think it was to do with pain as while under he had to have major abdominal surgery. They tried oeal morphine as he was awake enough to take it but then his breathing became a bit troublesome as he couldn't cough to get rid of some fluid.I'm told they may try again later to wake him as they think they have a better handle on managing his pain but he is still fighting the sepsis too...
I believe these kind of issues are seen often in ICU but it is still a worry obviously. I miss my boy so much and would give anything to hear his voice right now. I'm just glad work have given me indefinite compassionate leave as I don't think I could function in the office. I'm also lucky that my parents are local so have insisted I stay with them so I don't have to worry about boring stuff like food shopping and daily chores.
This forum has been a comfort already, thanks everyone.
He will get there . My wife has been in hospital for 11 weeks now. She had 4.5 weeks in an induced coma and then suffered 2.5 weeks of delirium. It took quite a while to wake her up. After that she suffered a major bleed and had to be induced again , it’s a long road ahead and as hard as your finding it you do need to look after yourself so you can look after him when you get him home, I think we are about 3 months away from that currently so long as there are no more further hiccups.
I’d urge you to join in the zoom meeting on Tuesdays it’s a great source of solace and questions can be answered too
Hi Turtle. Bless you it must be such a worrying time for you as it was for my family. I too suffered from a perforated bowel, 4 quadrant sepsis and pneumonia and was in a coma for 12 days, Staff brought me round after the 3rd attempt. To this day I still remember clearly the delirium and anxiety but it no longer troubles me, and although I still get tired and am not as strong as I was, I'm doing OK and am eternally grateful for the care I was given. It is a long road to recovery but be positive; I echo what Booby1970 said, it is very important to look after yourself too. Thinking of you
The good news is that Brian is well enough to be moved to an Enhanced Care Unit on a surgical ward, he went down form ICU last night. Information is still quite hard to come by which is frustrating but I was able to sit in with him for an hour again yesterday. He is very tired and dehydrated but from where we were on the weekend the progress has been nothing short of remarkable. There are still some concerns over the stoma they have fitted, and he is still being pumped full of antibiotics due to the infection in his blood.
What is very clear is that we have a long road ahead of us. I have taken that from all your lovely comments and support and will do everything I can to get Brian through this. I'm aware he may never be quite the person that he was, but there were definitely flashes of him there while I was talking to him yesterday. I don't think he has really grasped how poorly he was, but I think that is his way of dealing with his situation. I believe he is going to be in hospital for a good few weeks yet, so will be taking things day by day.
Good morning all. The bumps in the road to recovery were massively evident yesterday, Brian went into septic shock and his body started to shut down. They managed to stabilise him and took him for a procedure yesterday afternoon where they inserted a drain into the abdomen. He had fluid gathering in his belly and they think it is what is causing the sepsis. They are going to re-assess him this morning but are not ruling out a return to ICU, depending on how he responds.
The delerium is also there, he was leaving me voice notes on WhatsApp last night which were not making much sense. Hard to know how to respond in the right way, but I try to be gentle and not confuse him further.
I am awaiting a call this morning with an update, fingers crossed it is good news.
Unfortunately at this stage it is often 1 step forward and many back. It’s really hard for relatives as the knocks back seem bigger for them than the patient. During my stay I had 4 drains at one time and kept catching infections.
Not knowing how I’ll you have been seems to be quite common. When I came round my surgeon was quite frank in that he wasn’t going to tell me but not to worry as I was safe.He simply said that as I got better I would be told a little more over time. As I trust him implicitly I was prepared to accept it that way. Maybe it doesn’t work like that for everyone but I know everything now and can ask if I want more details. But I am six months down the road. Best not to know more than you can handle until you are ready for it.
So a couple more days have passed and Brian seems to be getting a little stronger day by day. The delerium seems to be getting better too in that he seems less confused and is able to communicate a better.He is still on IV antibiotics, and is likely to have a scan later in the week to assess whether the septic fluid that had gathered in his abdomen has drained off. He has two drains in at the moment but not too sure what the next steps are, they want to give the drains a couple of further days to work and then make a firm decision.
I'm going back to work tomorrow on a phased return, doing half hours. Lucky that I am in a position to be able to do that and they know that my situation could change at any time and will let me adjust things if I need to.
This forum has been, and will continue to be no doubt, a real comfort and source of information. Thanks to everyone who has taken time to share thoughts and stories.
Hi , if he is stable from his surgery and cardiovascular stable they will try ever morning. Some units switch both sedation sand pain relief off ( the pain relief lasts longer in the system) if he is waking and been agitated it may be pain . So a different pain killer prior to waking may be good , if all his blood work is normal and he continues to be agitated, they may scan his brain . Most patients if elderly and been through a tough ride do take a couple of times . He may also have delirium from the drugs / operation/ trauma of the bowel perforation when he wakes . It’s so difficult but he won’t remember this phase xxx
Hi all, just a little progress update.Brian is doing really well. He is walking a few steps independently and able to get up and wash himself etc. He is no longer on antibiotics and looks like they are going to remove his second abdominal drain today. If he continues in the same vein for the next few days they may discharge him early next week to continue his recovery at home. Two weeks ago I never thought that would be possible.
I just wanted to say a huge thank you to all of you who took the time to post comments on this thread. You will never know how much of a comfort it was, to understand that what we were both going through (him medically, me emotionally) was normal was a big help.
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