Hi everyone- this is the first time I have written a post and want to thank you all in advance for any support / help you can offer me.
My aunt aged 54 had a sudden cardiac arrest on Saturday following admission to the icu (luckily she was there) she was revived in 4 mins and had the oxygen tube in her nose through the episode. They are still unsure why she arrested and all we know is that the nurses were there when her heart beat dropped and blood pressure went down all we are grateful is for the fact they started CPR quickly and after two rounds she responded.
She was there for 3 days before the arrest with barely functioning kidneys, an infection and fluid around the heart and we were originally told they may intubate her to make breathing easier. They put her on a kidney machine but she didn't need to be intubated until her arrest on the Saturday and was breathing herself.
As her family we are naturally concerned about her recovery and getting our aunt back after such an awful episode. She had a tracheostomy on Tuesday and they stopped the sedation to bring her out of the medical coma she had been in for 4 days. The cardiologist came and said there was only minimal fluid around the heart now and the renal specialist also stopped the kidney machine to see what her kidneys did. So far she is producing urine showing her kidneys are somewhat working and breathing with less help from the breathing tube which is good.
What has us dazed is that she doesn't seem to be waking properly. It's been almost 72 hours since the sedation was stopped and all we have noticed is her arms moving up and down and her moving her legs- I cannot tell if this is in response to what we are saying or involuntary. After 48 hours she opened her eyes but they do not really focus on us- sometimes it seems as though she is listening and turns her head toward the person speaking but sometimes it's like she is staring at the ceiling. She will not squeeze my hand or move her fingers on queue but a few times when I've said move your legs she seems to have moved them- again could be coincidence.
I am wondering if anyone here has gone through this with a loved one or been told this happened with them. I really love my aunt and want her to get better - I would do anything in my power to help. I would love to hear from anyone who has been in a similar situation and had any advice. We have tried talking about things she likes (ie her dog and food) and my sister played a Madonna track to her that seemed to get her legs and both arms and shoulders moving much more than usual. Is it normal to still be so out of it almost 3 days after sedation is stopped? She was only sedated for 4 days. Do you think she can hear us and do you think we can do anything else to make the experience less scary for her if she can hear us.
I really appreciate any stories or advice you have (as long as you are ok to talk about them- I can see how a stay in icu is a life changing event and very stressful) as I have been reading a lot of your stories and they are giving me hope during this very anxious time.
Thank you so much for taking the time to read this, Renu X
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Thank you friz- the doctors are baffled as to why she has not woken yet especially as she was resuscitated within 4 mins. We are hopin. She will wake soon or at least show some signs of understanding us!
Waking from a coma is one of the most mind screwing head blowing experiences I've ever had. And I've taken lsd in my youth!! It varies, my family kept a diary for me, do this, and take a photo of your aunt if you can. I had major nightmares during the wake up process, so anything you can do to soothe her would be appreciated. Talk to her, repeat things, she won't mind as long as it's reassuring. I recall my mum saying she'd do anything to swap places with me, something she repeated over and over again, which I recall from one of my nightmares.
Massage is wonderful, get some lovely cream and massage her hands and feet, spritz her favourite perfume in the air, talk about her pets, tell her you love her. Read to her, nice short stories from a good book.
No stay in ITU is the same, my kidneys packed up too because they are very lazy!! But dialysis got them going again and I did my first day in the office on Thursday, 6 months after my cardiac arrest. I'm 38.
She will need you to be strong when she's out of the coma too, she will not take in how poorly she's been for some time.
Please do keep a diary for her, my sisters is a massive source of inspiration to me.
You can read some extracts of my sisters diary on my blog
BBDEBS thank you. I am really happy that your sister was there to do this for you. I will defos check out the link ! My aunt woke today - I say woke but what I mean is she was focussing on us. She tried to mouth our names and tried to speak to the nurse when she was adjusting her tubes. She isn't gripping our hand yet but is nodding her head to say yes and no which is great. The consultant doesn't think there is any damage to the brain which is good and her kidneys seem to be producing urine. They have also stopped the blood pressure drugs today. He has told us her rehabilitation will be slow and that she will be on the Trachy for a month to two. They are keeping her in icu on a feeding tube so she loses weight ( she is a large lady as I mentioned, maybe 160kg) much of this is the reason for her heart and kidney problems. I have been keeping a diary for both her and us to look back on. Thank you for your quick reply!
Omg! I'm soooo sorry! But I would love soooo much to talk to you! My sister 42 was found unresponsive May 10 of this year... Cardiac arrest do to drug use... And I seen her for the first time today and lost it! Her eyes are open but she isn't talking...why? Please if you get this... I have so many questions..lost without my sister
Hi, I am so sorry to hear that. I am not a doctor so am unsure why she is unresponsive- I guess it could down to how long she had no oxygen or it could be that she has just come round and will take a while to respond- what have the doctors said?
I don't know...I couldn't handle seeing her like that and I can't take hearing bad news😔... She was up I guess but she was focused on the TV..she smiled while I was talking to her...but she didn't look at me😞😞.... I'm so hurt, idk what to do...someone pls help...idk what to do
Sometimes it just takes a little time- after a cardiac arrest your body and mind are recovering from something so traumatic. My aunt did this a few days before she started talking and now she is doing great. I say talk to your cousin, hold her hand and ask her to squeeze it- play her favourite music, keep trying to make her talk. We never have up on my aunt and now she's pretty much how she was before she went into hospital x
I swore like a navvy at my husband and fought the nurses when I woke up. It's a horrible experience for the patient and she won't know where she is. She may well have experienced horrific nightmares and can't discern if this is reality yet. Give her time and be there for her xx
I also learned that my sister had 2 strokes as well...she's trying...you know? She's fighting!! But she just isn't talking... I pray she has brain activity...
I have the first 53 days of my 3 months in ICU 5-1/2 years ago completely missing, my wife and family tell me I was in and out of sedation during that time but I have no memory of it at all, for me it was a bizarre world of nightmares & hallucinations, mostly terrifying but some that were amusing (apparently I told everyone to be quiet as I had a mouse sleeping in the bed)
I had respiratory arrest and 2 cardiac arrests 12 days into my ICU stay when a mucus plug the size of a golf ball blocked my airway, luckily for me a nurse was shaving me when I started biting on the breathing tube, it was a close call but the consultant managed to remove it.
I think everyone reacts differently to sedation but having a heavy sedative along with other drugs flowing round your body takes times times to clear the system, that together with the dreams and suddenly seeing so many faces can make things look very strange from a patients view.
Keep talking and reassuring her that's she safe and as the drugs wear off she should start to recognize you.
Thanks Bill, wow you went through a lot! We have been talking to her and got her to respond to yes and no by moving her head. She's still dreamy but much more alert. I think we have a long way to go but we just met the cardiologist and he thinks the infection she had is what caused the respiratory and cardiac failure. He is happy with her progress right now so we will try to keep her motivated over the long recovery she has ahead of her. I think it's such a support that everyone shares experiences - not only for someone going through icu steps but for the anxious family.
A free download of the ICUsteps Intensive care guide for patients an relatives is available at icusteps.org/guide which will give you a lot of useful information.
I was 40 days in Hospital and 32 days in ICU I lost so much muscle that I was on a zimmer for 2 weeks and crutches for the next 2 weeks before I just used a stick if i was out and about. Confidence is the main issue with walking or anything that is overly hard to do again. So sometimes a firm hand is needed?
Thanks offcut- well done on your recovery- I can imagine how tough it was but you should be proud you overcame the obstacles before you. She has woken today much more alert and is nodding or moving her head to indicate yes or no. The consultant has told us there is no brain damage that he can see as she was responsive to him. This is a relief! We know the process ahead will be tough as he does not foresee her coming off the ventilator for at least a month.
My best advice is get as much movement into the legs and try and just stand if able to, it will make the leaving ICU much better. I am a determined person and do not like anything to beat me, which I am sure helped my mobility.
My biggest legacy is skeletal problems and short term memory. My lungs and heart are still chronic but I am still here a lot slower than I was but here!
Thanks Offcut- her biggest issue is her weight - it's the cause of every other problem she's had. They are keeping her in the icu for a while but during this time they are trying to drop some of her weight. Up until last Wednesday (11 days ago) she was able to stand and move from the bed to the chair and back. The infection she has had has knocked her back and she has had a crazy cocktail of antibiotics. She was pretty immobile before the cardiac arrest so I hope she will gain the strength to get up. She is moving her legs and slightly shuffling- she also moves her arms- yesterday she held her arm up in the air then dropped it so she is trying.
I will tell her she needs to keep moving and needs to try and move her legs. I understand this will be a long procedure but we are going to help her through.
When I was in I lost 3.5 stone but that was mainly because I was drip fed. I was told you can lose 2% a day of body weight when in a coma /ICU but the bad part is it takes it from the muscles not the fat that you want to lose
Nice to hear that their is support there for her. Well Done.
Just a quick update to you all you have been so kind to share your advice and experiences. We have had more progress today as in addition to nodding and moving her hands arms and legs she is miming what she wants to say. She is also gripping our hands now and moves her arm towards us. She took the pen and paper from me and tried to write down orange squash! Her writing isn't clear but when I asked her to draw she drew an orange!
I think the three things bugging her most at the moment are the Trachy, the fact she can't drink and the fact that she can't yet sit up in a chair. She is however moving around on the bed and shuffling herself with her arms. I imagine getting her to stand and walk will be a hurdle but for now she is moving as much as she can. She got emotional a few times possibly because she is unsure of what actually happened.
She mimed ' I love you' as I went to leave and held my hand. I am so proud that she has made progress each day so far. She has come so far in just a couple of days. I know we have a long way to go but at least she is trying her best!
Ah that is SO WONDERFUL!!! I remember sitting looking at the facebook log in page on my tv and not being able to raise my arms to put in my ID to tell people I was still alive. I lost 3 stone in ITU but have put 2 stone back on since leaving hospital!! It's muscle that goes, 3-11% per day, hence she will be very weak. I'd recommend getting her some talking books on a tablet with some headphones, or a CD Walkman for her to use, pass the time.
I am a large lady too but I'd take fat and fit over thin and weak any day. She'll get there, just keep reassuring her and I'm so so pleased she's awake now and can communicate with you.
What about some ice chips or water on a sponge to keep her lips wet.
Thanks Debs- we have been looking at iPad apps today- I brought her an iPad Air for her birthday last year so at least it's not too heavy or bulky! She was trying to write but was struggling a bit. I think she needs to drop weight for her own health - although I wish it wasn't in itu it means she's getting the nutrients she needs whilst reducing the impact of weight on her heart and other organs! We are allowed to give her water on the sponge but not too often- she was trying to take the glass off me yesterday! She has so many friends and they are picking different days to come and see her to cheer her up!
The next hurdle will be getting up and standing up. The physiotherapists are great and teaching her exercises to do with the Trachy. Hopefully they will find a large enough recliner for her to she can sit! She is moving her arms and pointing at the cup with water or the fan to say turn it up so that is good! I thank god that she is here with us today and am willing to do anything to help!
Everyone on this site has been a great help! I think I underestimated how much support we need as much as her!
I remember being so desperate for a drink, I would have killed for one but all I was allowed were the moist sponge sticks that I tried to suck dry, but after nearly 3 months the trachy was finally removed and I had my first drink of water which never tasted so good, then the next morning one of the nurses brought me in a cold bottle of Becks lager with a little red bow tied round it, I had become the celebrity patient that some how had beaten the odds with the help of some amazing people that will always be remembered.
It's great to hear your aunt has turn a corner and is on the road to recovery.
Thanks Bill, she is more herself now! She is desperate for the moist sponge sticks but mostly I think she hates the Trachy in her neck! She coughs quite a bit - it's so strange its an almost silent cough! They are considering the Trachy with a speaking valve but I do not know if that will happen yet, she has been doing her breathing exercises and seems to be doing well. She is no longer on the kidney machine and the ventilator has been turned from 24 to 10! She hasn't got up out of bed yet so I think that will be the next hurdle! Thank you for sharing your experience!
Hi everyone- you have all been so supportive the last few days and I couldn't thank you more. My aunt is doing well and they Reduced her ventilator even more and tried just oxygen. I have a quick question about behaviour- last night she pulled the lines from the side of her neck out and this afternoon she was trying to get up out of bed- she was very anxious and started panicking. She was a little more content when we gave her a hug but we went through this panic / try and get up cycle quite a few times.
My question is did any of you go through this type of anxious irrational behaviour and how long did it last?
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