3rd time my mum is waking up from sedation. 3rd time lucky? She is still not 'co-operating' after 4 days although she seems there to me....

[ellie2014]

I've written here a few times which was very helpful. My mum has ARDS and was put into ICU 4 weeks ago tomorrow. She was sedated and put on a ventilator, then ECMO, then after 5 days they took her off ECMO as she 'passed with flying colours' says the doctor.

Then she caught Pseudomonas and was re sedated and probed twice and put on a smaller ECMO. She had a high fever and whilst sedated they used iced tea towels on her overnight. She was woken again but got very anxious and her oxygen levels went back to 100% so she was sedated and probed again. She was given a tracheostomy.

She has holes from being over ventilated in both lungs and they are both near collapse with an air leak in 1 so they have a drain for that. The doctor said that at the moment it is all reversible and if it isn't there will be a conversation about 'withdrawal of treatment'

They have now changed her sedation from Propofol to DEX and her normal medication of temazepam was changed for Lorazepam, which they have now halved. I have read that its harder to wake patients on Lorazepam but been given lots of different reasons by 4 different doctors. I have been very concerned that her normal medication for anxiety and sleep has been altered incase it is effecting her in that she's in there having a really bad time. But apparently they could see that as they are monitoring her brain activity and can also see if she is sleeping?

Her oxygen levels are now at 40% and they have changed the ventilator (via her tracheostomy) so she can breath more on her own and her sedation is down to 0.4%. She is responding to me slightly by blinking and moving her tounge but not as much as when she first woke after 1 week where she was sticking her tounge right out. She still has a new infection, which they think is Pseudomonas again, but it is getting 'a bit' better.

So now it feels a crucial time to wake her up because she can't move on and do the rehab unless she can co-operate with the rehab guys.

I've not gone in today as a rare day off. But feel so guilty like i should be there . My brothers going in a 6 pm and i can't wait to get there tomorrow. I left her a CD and radio set to GOLD FM - her fav channel and tomorrow i also have bird sounds and sea sounds to play as well as some simple books to read.

Any thoughts would be great. Im scared they are suddenly going to prone her again and re sedate her all over again. But I do feel more hopeful she can turn the corner. I think about her night and day and she can't move her arms and legs or speak. I really hope she understands its not permanent. I tell her she's doing really well and I love her. Its hard to imagine how she sees things at the moment. I hope to God, she can turn the corner and get through this now. I want to do all i can to help her though.

Ellie x

[harvey8]

hi Ellie,that sounds a bit better, all we can tell you is how we felt whilst under sedation and i can tell you that although i knew i was really ill by the time i knew what was going on, I did not feel too bad and because everyone was talking to me all the time, the nurses, doctors and my family i felt quite calm and looked after, even so it took me a long time to wake up and have my tube out and actualy talk to my daughter,

my family and i have just been to london where we met up with, not only doctors and nurses but ex ICU patients and their families and having spoken to them i know a lot of the patients had a simaliar experiance to me and ALL the relatives went through excatly what my daugher experianced and from what you say just how you are feeling right now, I think of you each and every day and cant wait for the day when tell us that she has spoken to you, I can tell you my daugher told me she did not think that day would come but she was beside herself with excitment when it happened, so hang in there we know how hard it is but you and your mum are in our prayers, talk to you soon Isabel xx

also please do no feel bad about having time off you need to look after yourself as well

[DV2015 in reply to harvey8]

How long did it take for you to come out of sedation... my father was on heavy sedation for 10 days... has been off for approximately 7 days now. About 3 days ago he started responding on command but really can't do much aside from open his eyes for a bit and move his limbs for a bit. I know that every patient is different but would like to hear how long it took you to fully wake up.

[ellie2014]

That's great to know. You must have been at st Thomas as well? It really is a great hospital with great staff. My brother has just visited and said she smiled at him And spent the rest if the time looking at him then sleeping . I'm starting to feel like it could all be ok . I know it's a rough road to recovery . And there could be other things happen . But it will be the happiest day ever when I hear her speak again! Xx

[harvey8]

that sounds just wonderful if she is smiling she is doing good, ellie i was not in St Thomas i was in Northampton but was invited along with a lot of other ICU folk for a meeting in Euston to do with funding for ICU departments all over the country, we were invited to attend because i was an ex patient and my family were asked if they could come too so they did, my husband and my daughter because we all went though my illness together, and yes you are right there will be things to overcome but trust me once you come through this they wont be as bad as what you have been through already and you can, i am sure get help from the ICU department that your mum was in like i did and there is always us, if something doesnt seem quite normal just drop us a line and i am sure one of us will be able to help

pleased that things are looking up. Isabel xx please keep us posted

[harvey8]

hope you get a smile from mum today xx

[ellie2014]

Hi Isabel, I didn't get a smile and she has been really unhappy and I am currently feeling very traumatized and upset . It's a great help to write because I don't know know who else to turn to at the moment . I have a nurse at intensive care hotline . Com who is really helpful but I feel I have asked my quota of questions and things change so much each day I have too many worries and questions .

It's just the worse thing seeing her so distressed . I guess she has itc delerium but they are also weaning her from her normal anxiety medication as well as trying a new medication and she has a drain in her lung which one doctor said could be causing her pain but they don't know for sure if it's pain or frustration . She's screaming and I can see inside her mouth and the back of her throat is wobbling . There's no sound obviously . She can only move her neck so she's moving that left to right . She's been like this all day and yesterday . They said she had no sleep last night . She's not sleeping today . Opposite her a lady has died and the family are all screaming and shouting . My mum us probably in some personal nightmare and their screams are confirming she's not in a good place .

How long did your delerium last? I'm worried that because of the weaning of her normal medication she won't be able to get into her right mind which is fine when she has her tablets and is reassured from me and she's had good sleep. She's not getting this .

The doctor said its a slow process and she's still very ill with bad infection. I just can't believe my mum has to suffer in this way for possibly months . I know this is a terrible way to look at it but she has no quality of life and no say over it . I want to get her out if there but can't . I feel responsible for her being there. I want to help her have a better time in her environment and at least get her sone daylight (there's scaffolding out the window and so miserable in there. ) did you have daylight?

Ellie x

[harvey8]

I feel so much for you that your post made me weepy,how dreadful for you to witness a loss on the ward that would unnerve anyone. dont ever think that you are asking too many questions if you have to talk to someone on her team 10 times a day THEN DO IT they know only too well what you are going through and will, i am sure, be only too pleased to help you through this very traumatic time, in a way it was worse for my daughter than it was for me because most of the time although i seemed distressed I didnt know what was going on but she was very very distressed and still after 13 months she cant go back into the hospital alone and even then, with someone with her she has panic attacks whereas I went back into the ICU room and saw my bed and felt ok

my nightmares lasted until after i had been moved to HDU and then gradually they became less and less until by the time i was taken onto a normal ward they had gone, although even when I came home I didnt like bedtime I could not put my finger on why i panicked at bedtime, but that only lasted a matter of a few weeks

ellie why do you feel responsible it sounds like she was so ill there would have been no other option for her.

also the doctors painted a very black picture for me saying at one time that because i was taking a long time to come out of sedation that i may have had a stroke and then that my kidneys were not working properly and if i wake up i could be on dialysis, and then they thought i may have diabetes, they also said i had very little chance of surviving and for my family to expect the worse but i did wake up with none of those things to worry about, so I think they have to prepare you for the worst outcome

yes i did have a window behind me but i didnt realize that until i went back in on one of my aftercare visits.

my daughter was also very distressed when they had to suction me and sometimes I was choking but that again was worse for her than me I did not know anything about that

why dont you, at home write down all of the questions and worries(no matter how many or small you may think they are ) and then ask for a meeting with her doctor, please feel free to stay in daily contact with me if only to get it all of your chest, I think about you and your mum every day anyway and I am waiting for the day that i get a post to say she in out of the woods and has spoken to you, when you and your family have been through this, you feel a close affinity for anyone in a similar position, it is a bond that is like no other I have a need to make things better for you but the only thing I can do is to listen. so have the meeting with the doctors and maybe that will help, talk to you very soon Isabel xx

[ellie2014]

Thank you Isabel! She seemed slightly better delirium wise today and I had a really good chat with the doctor for 30 mins which I recorded. She has a hole in each lung which is getting better with antibiotics but there could be bugs hiding . I just need to pray every hour now . She said the delirium will continue whilst she has the infection and the chest drain she has will feel like pleuracy . So they will keep up the fentanyl pain killer . She said to pin up large notes about which CDs to okay And when . She said it will take a long time for her lungs to recover from holes . If she gets better it will all be worth it . Will update you with next chest scan to see if getting better . Xx

[harvey8]

hi ellie glad you had a chat with the doctor because you need to know whats going on and be part of that,but that needs to be ongoing with you and the doctors, just let them know you need to be kept up to speed with what is going on with your mum, of course they will continue to work hard for your mum and get her better but for your peace of mind you need to know each step of the way where they are at. i just wish you could see more improvement to give you the lift that you need and one day soon when you go in that is what will happen, your mum has been in there longer that i was but a lot of people on this site have been in for much much longer and it has all been ok in the end so i really hope that gives you the strength to look forward to better days, wish I could give you a hug and maybe make you feel a little better, so I am sending you a big hug, keep your chin up, talk to you very soon Isabel xx

[KarenR72]

Hi Ellie, I am in a similar situation. My mum is 65 and has been in ICU for three and a half weeks, she has ARDS. She is now off sedation but since then I've been finding it horrendous, the more she understands her situation the more horrified she looks. She seems able to put on a brave face with everyone else but when I visit her heart rate goes high and she looks distressed. I feel totally useless. She isn't sleeping as she usually takes sleeping tablets and has anxiety and they are changing medication. I just feel an unbearable amount of loss from her, but I am probably putting my emotions onto her. I'm trying to chat and be positive when I visit but I don't even know what to say, she's always suffered from depression and I think, what chance has she got of being happy now?

[ellie2014]

Hi Karen, can she speak ok? Does she have a trache? I know it's such a hard situation. It took my mum so long to come around properly and what looks like her being normal may not be yet , so try not to worry too much. I know how upsetting it all is but I used to have my key phrases to say which were true and looking on the positive side: 1) you are getting better. ' I'd keep saying this because she was and still is . And it's important to stay focused. 2) it could be worse . There are many worse situations when you think about it although I honestly know how awful it feels . 3) this is all temporary and we will get back to normal .

With the medication and sleeping , I asked to speak to the pharmacist daily to see when her normal medication can resume and to see what they can do. They are very approachable . Also bring it up with meetings with the doctors and find out the reason they have changed the meds and when she will get them and what she can do about sleep .

I would leave a note for the nurses to see asking them to put her earplugs in . I believe these do help muffle all the noise.

Play her relaxing music ,waves , birds , her fav songs to keep spirits up

Good luck and stay in touch. Xxx

[ellie2014]

Hi Karen, can she speak ok? Does she have a trache? I know it's such a hard situation. It took my mum so long to come around properly and what looks like her being normal may not be yet , so try not to worry too much. I know how upsetting it all is but I used to have my key phrases to say which were true and looking on the positive side: 1) you are getting better. ' I'd keep saying this because she was and still is . And it's important to stay focused. 2) it could be worse . There are many worse situations when you think about it although I honestly know how awful it feels . 3) this is all temporary and we will get back to normal .

With the medication and sleeping , I asked to speak to the pharmacist daily to see when her normal medication can resume and to see what they can do. They are very approachable . Also bring it up with meetings with the doctors and find out the reason they have changed the meds and when she will get them and what she can do about sleep .

I would leave a note for the nurses to see asking them to put her earplugs in . I believe these do help muffle all the noise.

Play her relaxing music ,waves , birds , her fav songs to keep spirits up

Good luck and stay in touch. Xxx

[KarenR72]

Hi, no she can nod her head but can't speak due to a tracheostomy. She is definitely a there, she's answering questions . Thanks for the advice. I'm telling her she is doing great and tonight I'm taking a video of my 3year old son in for her as he's a bit too young to visit.

[ellie2014]

Aw that's a good idea! I have a young baby too and that cheers her up the most to watch the vids of him! Yes my mum couldn't speak for quite a while with the trache as hers didn't have a speaking valve . I had to lip read her which was crazy hard. My mum doesn't remember anything from that time which I'm so glad about and still surprised about as she seemed with it to me but all the time afterwards over rides it maybe . It gets easier and I'm sure you will feel so much better when she is out of this very difficult stage . Lots of love and stay strong !