Dad in ICU for past three weeks : My dad has now... - ICUsteps

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Dad in ICU for past three weeks

AJH1709 profile image
17 Replies

My dad has now been in intensive care for three weeks. After two weeks we were seeing a slight improvement in that he opened his eyes, nodded, gripped our hands and we were starting to feel very positive. Unfortunately he then became very unstable due to an internal bleed and had emergency surgery and now we seem to be back at square one again. In the past week he has been completely sedated again and doesn't seem to know we are there. My mum and I share the visiting - she will go for four days in a row and then I go for three (to give each other a break - it is amazing how physically and mentally draining just sitting in a hospital can be). Reading other stories some only seem to be in ICU for a week or so though speaking to relatives at the unit we are at some of their loved ones have been there months. It is a very tough time as it is so unknown and you just don't know what is going to happen next. I think I have become immune to all the machines and people crying and we do regard ourselves as one of the lucky ones at the moment as the doctors do seem to have a plan and have never said anything negative in respect of his treatment. It's just such a long slow process. I guess every patient is very different but is very hard when there just seems no end in sight.

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AJH1709
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17 Replies
Luckyone profile image
Luckyone

Hi AJH 1709,

I wife would relate to everything you are going through as I spent 3 months in ICU with more ups & downs than a roller coaster, she used to call it the ICU bubble every time she walked through the doors as if the outside world never existed when she visited. we owe so much gratitude to the doctors that would never give up even when things looked very bleak for me & the nurses that gave her & the family so much comfort and support.

At times it does feel as if the nightmare will never end for both patients & relatives, while we're sedated it's the relatives that suffer the trauma of seeing a loved one lying there with so many tubes and wires attached to them, it's later that the trauma often catches up with patients and will be the time when your dad will need your support, you can download an intensive care guide for patients & relatives at icusteps.org

I hope your dad is soon on the road to recovery.

Bill

AJH1709 profile image
AJH1709 in reply to Luckyone

Many thanks for your reply Bill and great that you are now doing well. My mum picked up a copy of the Intensive Care Guide from the ICU and told me to read it which is how I found this support network. It was very informative - to be honest I didn't even realise how much the patients can be affected - something else to face later on!!! It's great to find this support group as I have found that regular friends have stopped asking really how my dad is - it's either a far too graphic a story or a bit of a conversation stopper when I say - 'same, still on life support!'

Just taking each day as it comes - have to have hope or this whole nightmare would be more unbearable. I can definitely relate to your wife's ICU Bubble. It really is like another world and one that no-one can really understand unless they have been there. I have made some good friends of other relatives in the unit which is good as quite a few of us find we are visiting on our own and it is comforting to know there is always someone there we can turn to. We find we have a lot of time to chat as we spend a lot of time in the waiting room while doctors do their rounds or patients are being turned.

The nurses and doctors are fantastic - in fact that is the one good thing that I can phone the nurse who is looking after my dad at any time night or day. It is very comforting. They are always more than happy to give an update and reassure me on the days that I don't visit. He is in a hospital in London so it is just impossible to go every day. My mum stays in a guest house close by a few days a week as she finds the travelling just too much.

On the outside I'm still strong and smiling and carrying on, its just good to be able to talk to people who understand that inside it's quite a different story.

Amanda x

bunnyrabbit1234 profile image
bunnyrabbit1234

Hi be strong and please keep talking to your dad . I was in a coma for over 2 weeks and afterwards when i spoke to my family about my dreams they said no that one was not a dream that was real and that happened a few times .

Regards Mick

tessan profile image
tessan

Hi Amanda..it's a tough time for u and your family and I appreciate what u are all going through.My brother is still in ICU five weeks now. He had heart bypass and there were complications durning operation. .He's getting there little by little ..we keep him updated on the world outside, they can hear everything so keep talking to your dad;it helps!..I hope your dad makes a full recovery. .take care ,tessan💕

AJH1709 profile image
AJH1709 in reply to tessan

Thank you Tessan

In the first couple of weeks I know he could hear us - he even nodded when I asked if he was bored. This past week and a half he has shown no signs of even knowing we are there as they have kept his sedation so high. Its so hard to keep talking when they don't seem to hear you - though guess I should make the most of it - he can't answer back for once in his life!!!! x

AJH1709 profile image
AJH1709

He started off in hospital after collapsing and was initially diagnosed with sepsis and pneumonia. After three weeks he had chest pains and ended up being sedated and ventilated and rushed to St Mary's in London as they believed an aneurysm was leaking. We were told to say goodbye as he may not even survive the journey. After two weeks in ICU and seeing slight improvement - he would at least look at us and nod his head - it appears an aneurysm was slowly leaking and had in fact caused erosion of his oesophagus, he was rushed for emergency surgery (again we were warned he may not survive the surgery and may bleed out on the operating table). He had a stent put in and has now been totally sedated and ventilated again for the last week and a half. It just gets very depressing being told there is 'no change' every day - though guess shouldn't grumble no change is better than a decline. The wait for them to wake up just seems to take forever and I appreciate we have only been waiting three weeks and many others wait a lot longer.

Pinktumbleweed profile image
Pinktumbleweed in reply to AJH1709

what eventually happen? He wake up?

AJH1709 profile image
AJH1709

Hi Friz - Thank you I have been working from home today with these videos playing in the background - some very thought provoking stuff. No he is still on a ventilator - no tracheostomy. I have read a few times that normally tube is removed and a tracheostomy fitted after about two weeks - we have got to 3 1/2 weeks now. After watching the empowering videos I will ask tomorrow about this when I go to visit. He does still have a lot of excretions on his chest - is it easier for them to suction them through the tube - I don't know.

tessan profile image
tessan

My brother was the same..he had a bleed and they kept him on high sedation..he is off all sadation now but still not out of the woods yet. He's frustrated that we can't understand what he is saying (has traceostamoy ) so it's difficult to understand him..I know what u are going through. .this site and the people on it are of great support..keep positive! where there's life there's hope!..take care Tessan❤

AJH1709 profile image
AJH1709

Had a low day yesterday but my mum visited yesterday and phoned me last night and said another relative mentioned to her how much he likes me being there as I am so bubbly and he enjoys chatting to me in the waiting room. It's nice to hear I cheer someone up. So tomorrow I am going to visit with a big smile on my face :) Have to be positive don't we?? xx

tessan profile image
tessan

That's it..keep that smile going🙅

angelrock profile image
angelrock

Hello Amanda,

Without appearing rude, please be reassured that your father is in the very best place suited for all his health and medical needs, the staff are fully trained to assist him with his daily needs including dietary and physical. I myself was a patient who fortunately don't remember much a part from a few things, family and friends who visited me and the hallucinations. I still can't recollect my times in the main wards however later times are very clear.

I wish you and your family positive times ahead. With loving kindness and compassion to you all.

AJH1709 profile image
AJH1709 in reply to angelrock

Thank you - I do know we are very lucky as actually if he hadn't been in the hospital and in ICU when he had his big bleed he wouldn't still be here at all. Just being impatient - I know its a long process. Feel positive again now - had a low couple of days I think, guess that's normal for everything to just suddenly feel overwhelming. It's great to hear good news stories like your own. Glad you have made a good recovery and thank you for giving positive feedback - this group is great - to actually speak to people who understand.

AJH1709 profile image
AJH1709

So today they told me that the teams will be discussing a tracheostomy tomorrow and I was also asked what my dad's views would be on being in there and what his and my thoughts were on resuscitation - that didn't sound so hopeful :(

Jkz1919 profile image
Jkz1919 in reply to AJH1709

My father in law is going through this as we speak. He has been in the ICU for three weeks and is experiencing the same as your father did. They cannot wake him up without him being severely agitated. I know this post was 2 years ago, but do you have any advice or follow up stories. Thank you.

Pinktumbleweed profile image
Pinktumbleweed in reply to Jkz1919

searching for follow up stories as well. like did they ever wake up fully?

Amyjobeth profile image
Amyjobeth

Hi AJH1709,

I'm really interested in hearing the steps your dad took after this, if you are able to share? I am going through the same things with my dad. I strongly feel the meds they gave him were too much/too strong, and he'll never get out of ICU.

Kind Regards,

Amy

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