Hi my dad has been in ICU for 19 days, 15 on a ventilator. Due to an oesophagus bleed. He has liver cirrhosis.
Today he has been deemed well enough to go to the rehabilitation ward. Which I great I know it’s a step in the right direction, but I can’t help but feel so so worried. When I visited him this afternoon before he left, the anaesthetist come and spoke to us and explained they had put a DNR on dads file, which scared the life out of me! And is probably the reason I’m worried about him going onto the ward now.
He is still unable to talk, he is on oxygen through nasal cannula and still being tube fed. He sat up in a chair for the first time today. I just feel this is all happening very quickly and really worry he won’t have the level of care he’s getting in the ICU.
Am I being silly? I feel so so worried.
Thanks for reading, any replies or experiences would be greatly appreciated.
Emma.
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Emmyn91
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Hi Emma I was in ICU in January for 14 days on a vent, I had a tracheotomy in, I also was tube fed, when I eventually got to a rehab ward, I too was concerned as I couldn’t speak, eat, walk, do anything for myself, it was a slow process but eventually with help from physiotherapist etc and after a two weeks in a rehab home I was allowed home, this was in April by then, it then took months for me to be able to do things for myself, I’m still on oxygen now as I was sent home with it, I’m getting stronger every day and things do get abit easier, so it will take time for your dad to recover, but chin up, I’m thankful I’m still here, give him i big hug from me xxx
Hi thank you for your reply, it is really nice to hear from people that have been in the same type of situation. The not doing anything for himself really is the hardest thing for him as he’s so independent, I’m just hoping he can understand things will take time. At the moment he doesn’t realise how far he has come. I’m glad that everyday things get easier for you that is great to hear 😊
The important thing about a rehabilitation ward is that your dad will get a lot of input from physiotherapists and occupational therapists. He needs to get his strength back and they’re the people to do that. It’s a good move. Hopefully the DNAR has been discussed with him so he has had a chance to understand. It doesn’t mean that treatment is being withdrawn but just CPR.
You are 100% right. I just think as it happened so quickly I wasn’t expecting it or prepared. And then to be told about the DNR I’m thinking oh they are just going to let him get on with it! He hasn’t had to be resuscitated during his ICU stay so hopefully he won’t need to while recovering. They did explain it to me and dad, and dad looked terrified which was horrible to see, I tried to reassure him that he’s getting better and going to recovery ward and that is a good thing. I think the not being able to speak is really hard for him, but hopefully as he gets stronger he will get that back.
It would be disingenuous of me to claim that dropping out of ICU was a smooth ride.
I don’t in any way want to criticise the individual staff that looked after me because they did their best. ICU was brilliant, the further I moved from ICU ( & I moved 4 times) the less prepared they were for someone who had been as ill as I was.
We now speak regularly to health care assistants during their induction to highlight the difficulty experienced by critical care patients.
All I can say is you need to be ‘on it’ and raise concerns asap. In my case, I didn’t receive the same level of care, my physios were brilliant, I had very little OT. I regularly had to challenge my drug regime ( through human error) something that continues to happen. If I was on antibiotics and needed 6hrs infusions, I had to ask staff to perform it on occasion.
I don’t have a problem with taking responsibility for myself and maybe we are being naive believing any health service could operate without flaws. At present, the NHS is operating in unprecedented times, understaffed, overworked & under paid.
I eternally grateful to the care I was given despite the hiccups.
A DNR only removes cpr as a treatment option - all other therapies would remain in place.
I had a long stay in ICU in 2020. Initially with an infection and sepsis that gave me kidney failure amongst other things. After 4 weeks I had recovered enough to be transfered to a general ward, but unfortunately contracted covid and was returned to ICU. I was on a ventilator and sedated for 4 weeks, I had a trachy later. At one point I couldnt speak but slowly after about 10 weeks I recovered to be transfered to a ward and then to a community hospital for physiotherapy. I could not walk, but the physios got be back on my feet after 3 weeks and I was able to go to the washroom on my own. ICU is a strange place but the doctors and nurses worked hard to keep me going and although my family were warned on more than one occassion I might not make it I did, thanks to them. I was told that some of the procedures they performed to keep me going could not be repeated as my body would not cope, but they qualified that and said they would try and resuss me if required. A bit confusing but I think I understood. Over a year later I am still receiving follow ups with the hospital and have to have regular blood tests to check my kidney function, which is permanently damaged, and my type two diabetes. So its a long haul to recovery. Bless the NHS.
It may be appropriate to ask if your dad could have a voice box on his tracky. It helped with communication but it was also frustrating as I was only allowed to use it for short periods of time either way a big step forward.
It is your right to challenge the DNR and to get the opinion of another Dr if you are not happy... in fact I wonder why it was the anaesthetist that told you and not the person in charge of your Dad's care?
It was an anaesthatist who told me about my husband's DNR. I feel that it was her who had made the decision due to his weakness after being ventilated for so long. I suppose it depends on the patient's condition as to who may make the decision.Luckily my husband recovered and we were able to clear the DNR from his records a few months later.
I am sure it is normal to have concerns but rehabilitation means you are through the worst, It must be so hard for families and as a survivor during lockdown we had no visitors. To get through ICU is huge as we are the most ill and our survival odds can be poor, I wish your family well I know the impact to mine was hard as critical for 10 days,
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