Hi my partner was admitted to hospital 8 days ago, he had swollen feet and hands and couldnt breathe well, he was diagnosed with heart and kidney failure and immediatley sedated in icu, since then they have drained the fluid and the dialysis machine for now is turned off which i understand he may need again. His breathing is much better now.
They have tried taking him off sedation everyday since but say he gets agitated so is re sedated, he has now been fitted with a tracheotomy.
Has anyone been through something similar in icu, I know they said it could be a slow process for the sedatives to come out of his body but it seems everyday to be one step forward and two steps back.
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Pepsi2019
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I haven't been through exactly the same experience with regard to coming off sedation but I know with my husband's stay in ICU it definitely felt like one step forward and two steps back. Critical care is a horrible roller coaster ride.
There have been other people on here sharing stories of it taking them a long time to come round so try not to worry too much. Try to think of the positives: he has a tracheostomy, he is breathing better and they are ready to wake him up 🙂 Look after yourself x
Thank you so much for your reply, i really do appreciate it. I just feel completely helpless at the moment, Trying to be patient and be thankful for small improvements. Thank you so much xxx
Sadly the ICU journey is very much this way, one day is never the same . A Trachy is a good sign , it means they think he is strong enough and will make him so much more comfortable when he is brought round.
My husband had score of sedation holds over his time in ITU, he was exceptionally critical . He struggled with his breathing (Covid) when they attempted the holds his BP would go really high and he too became agitated .
Eventually with a fine balance with the meds and the amazing knowledge and care of the ICU staff, they eventually succeeded. It is a slow process . Good luck
Thank you so much for your reply, my partner has been the same with his blood pressure rising when they take him off sedation, I was allowed to be with him yesterday when they tried which i know i was very lucky to be able to do, they said it was a one off visit to see if he would be calmer with me there but i dont think he was aware to be honest. Even though it was scary i do feel better for seeing him. I just wish they would be able to wake him soon, the waiting and not knowing is horrible isnt it x
Absolutely, the waiting is torturous. That is so wonderful they allowed you to be with him even though it was scary. I used to lie in bed and would pretend I was holding his hand and calming him down - crazy I know . They performed a blooming miracle and eventually with the fine balance of meds and knowledge it worked. Have you thought about sending him a tablet, and having your voice playing on it so he can hear you x
i hadnt but that is a brilliant idea thank you, ill look in to that now, and the doctor was wonderful the nurses were shocked that i had been allowed in, I have been doing the same i know it sounds mad but i talk to him in my head telling him its going to be ok and that me and the kids love him and cant wait for him to come home, i suppose it does me give some comfort x
I think that doctor just knows that we need to see out loved ones, as you have just said you expect them to wake up and everything is normal, it's far from that, Stay off google, your anxiety will be heightened . My husband has acute delirium for weeks then has so many other things wrong due to be ventilated for nearly 6 weeks. You keep talking in your head , get the children to talk to him too . I don't know which hospital he is in , but some have tablets and will allow you to facetime too xx
Hi, again my situation is not exactly the same but can empathise with the ICU journey. My mum had a cardiac arrest and is on day 14 of her hospital stay (see my posts). They started to try and wake her up on around day 2 and she is only now classed as semi conscious. She opens her eyes spontaneously but doesn’t focus on anyone/anything. She had a tracheostomy last Wednesday and is so much more comfortable since being off the ventilator. Definitely see it as a positive. The days are so so long and the waiting for news is agonising but try and stay strong and look after yourself as he is going to need you! Sending love x
Thank you, it is so good to hear from people who understand and have been through similar, I think the waiting feels like torture at the moment, i didnt realize how long it would take for him to wake up. I hope your mom improves well x
I felt the same after I found this fantastic place, it really does help! Sadly I genuinely thought they just ‘come round’ like you see on tv and it was such a shock to find out it doesn’t work that way. It’s absolute torture and distraction helps for little parts of the day but just try and hang on in there. Wishing you lots of luck xxx
Thank you that really does mean a lot xxx I feel like i can be fine one minute then break down the next with worry, it is so helpful to know that its quite normal to take time to come off sedation, it really isnt like you see on tv. The first day they said they were going to wake him up i thought i would be speaking to him the same day, how wrong i was. Most of the information i have got has come from google which definitely is the wrong thing to do xxx
My family really thought that too, we were so sure that she was going to be back with us by now. All the positive stories on here help for sure, there’s a lot of hope just try and cling on to it xx
Hi Pepsi2019, We had a very similar situation with my 28 year old son. He was admitted on 26th Dec 2020 and was quickly diagnosed with severe pancreatitis. He was intubated on 29th Dec. I suppose we didn’t realise just how seriously ill he was at the time. The nurses were brilliant, we had a Skype call with him at least once a day even though in the early days he was completely out of it. That being said, when we did speak to him, or sing, get the dogs barking, he sometimes gave a hint of a smile and raised his eyebrow and squeezed the nurses hand. He had a tracheostomy fitted after about 10 days but was still out of it and heavily sedated. It took what seemed forever to get him off the sedation. The same as you, as soon as he got agitated, they’d sedate him again. He try and get out of bed, pull at his lines so they said for his own safety he had to be sedated again. It was a long, slow process, full of ups and downs. They did have spare iPads on the ward so we told the nurses things he liked to watch and songs he liked so when he was coming around to put those on try and calm him and that did seem to work. He eventually came out of hospital on 10th Feb, very weak but on the the mend now, very slowly. It really is a torturous journey, of ups and downs, highs and lows, but you will get there. I was worried Tom was the only one who had gone through this in that it was taking so long but the nurses all just said it takes time, a good day, a bad day. It’s a real mixture of emotions. Stay strong, it may take a while but he’s in good hands xx
oh thank you for your reply, it must of been so awful to go through this with your son, i am glad he is on the mend now and hope he continues to improve well. Its frustrating when you have no idea how long these things usually take so i am very grateful for this page and all the answers and advice i definitely dont feel so alone now. Thank you xxx
One thing the ICU support team did say was to make a diary. Your partner will probably remember nothing and may not want to know. We did speak to Tom several times and he acknowledged us, though couldn’t speak because of the tracheostomy but he remembers nothing about his time in ICU at all, which is probably a good thing. Stay strong 🤗 Xxx
Thank you for your reply, I really hope and pray your relative gets better soon, please do keep me posted and ill do the same. Theyre going to try and wake my partner again today so i just pray it goes well xxx
It is slow often, and one step forward two back too. It is important that you don’t run yourself ragged now because you will need all your energy and inner resource for later in the journey. It is a horrendous experience for everyone involved
Hi good to see so many positive messages on here. My wife had a stroke 3 weeks ago she ended up in ICU and ventilated, after a week a tracheotomy was fitted and sedation reduced to remove ventricular. She became very agitated and had to be sedated again but after a few times things calmed down. She is now fully conscious and talking about removing tracheotomy once she can breathe for 24 hours on her own.
As people have said the ICU journey has so many ups and downs but you will get there. Just keep the faith and best of luck for you.
My partner woke from being weaned off sedation yesterday after 12 days on sedation/ventilator and we were over the moon to be able to facetime him, he is still quite poorly and obviously due to the sedation and tracheotomy cant talk yet but after the past 12 days of worry we re definitely feeling positive. Thank you you you all for your comments and i hope and pray your loved ones are doing well xxx
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Not speaking after coming out of sedation. 
Agitation will waking from sedation in ICU on vent and ecmo
Responding to commands after sedation off or reduced
Weaning off sedation
Can't wean off sedation
