My father is currently at a London Hospital in ICU with covid. What began with CPAP then turned into being fully sedated for over 4 weeks and even called in on the 2nd Feb as they did not think he would make it. We have had 4 calls like that! Only once where we had to go in, He seems to stabilize although they keep telling us that he is very sick and critical. Finally after 4 weeks they gave him a tracheostomy and he is on 45 Oxygen, pressure 22 (not sure if this number is good or bad!) and peep 5. I've been told do not focus on the numbers but all of this is so so painful! Especially for my mum who has never been without my dad even for a couple of days!
We have been factiming him and although they are reducing sedation he does get agitated and starts breathing over ventilator but yesterday they said he was ok and did spontaneous breathing for 8 hours and chest physio. He still only blinks and opens eyes after 11 days without following any commands yet. ITs so heart breaking and we try not to cry in front of him.
When we heard from doctors they still don't seem positive even though he went from 100 to 45, organs seems ok, he does have signs of fibrosis and lung scaring and CT for brain seems ok (no stroke). They keep saying he has still not turned a corner and speaking valve is way down the line. Everything they say makes us feel so flat after. Almost like there is no hope and we have a good cry after. His infection that they have been treating for him has gotten better they say but he could have more along the way.
When we really want to hear.. hes making progress re breathing etc we are just getting the same thing, he can make it or he may not and its unpredictable.
He also static for the last 2 weeks on the tracheostomy, off all the blood pressure medicine support but oxygen level the same and pressure level put up.
Anyone else on a similar journey where they stay static and then sudden improvement? They stopped the steroids because of he infection and now they are proposing putting him back on it to help the lung inflammation. Previous scans show not much improvement with steroids. Has anyone else had this where despite high doses it makes not difference?
Also how long before dadwill start to follow commands, as after 2 weeks he blinks and open eyes and that's it.
From a very very scared, anxious and worried daughter ( in tears as I write).
I also want to thank everyone on the group for all the support.
Priti
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Psp007
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Im 72 and not a covid patient although I spent far too long in ICU. What you describe is not peculiar to covid patients but to anyone who has been in ICU. I had pneumonia / sepsis and a heart valve replacement. I was sedated / ventilated for nearly 2 months and had a trachy for longer than that. I too now have P F which probaby has been caused by ICU trauma / methotraxate / pneumonia (covid) or a combination. It took along time to ween me off the drugs and I was very agitated and suffered from hallucinations. The family werre called in twice.
Some hospitals tend not to be too optimistic as I guess they don't want to raise hopes which is what you want. It can be a long process. I came out of hospital in mid March '20 and I am recovering slowly. I am sure there will be others who will tell you a similar story.
My dad was pretty much this same back in March . Spent 11 weeks on ventilator. The first five weeks was very much similar your dad , doctors telling us he was static . He had lots of infections along the way and his kidneys failed .
He had a few litres of fluid drained from his lungs at 5 weeks in only then did he really improve . He was still very ill and the weaning process was long and he picked up a few infections along the way but he got there in the end and came home in June .
I just tried to take every positive I could even when they doctors painted a bleak outlook .
He’s left with some scarring on his lungs but is getting there . There is hope m, I wish you all the best for a good outcome x
#thanks so much for this hope.. i talked about the draining luid yesterday and consultants say he does not need that although extreme damage to the lungs and cavities. I'm taking this story as a reason to keep fighting!
I would say that a tracheostomy is a positive step forward and as others have said, it can take a long while to come round properly after sedation. I'm not too sure about the other medical questions you have asked.
I think staff find it difficult as they have to deliver the facts and can't get your hopes up. I remember my first phone call and being told that my husband could die. I don't think I will ever forget that moment but he is still here to tell the tale 🙂
Try to keep positive and make sure you are looking after yourself too. There is a relatives group run by ICU steps Chester if you wanted to talk to people who have been through a similar experience. They really helped me a lot.
Thanks I was on the group yesterday and it was truly wonderful to be part of it and hear from other relatives who have been through and are going through this nightmare..
I know this is a very hard road with many ups and downs. My husband took 31 days to wake up. Doctors even told me to pull plug because he wouldn't 3 times. It has been 1 month since he did and cognitively he is all there. Don't give up!
great to know it can take long as they do give him a little sedation again when he gets agitated so I feel hes always sedated and not given time to wake up properly. Of course they know best though!
Please hang on in there, my sister was put on life support on the 9th January, and had a trachy fitted on the 4th feb, so around about the same as your husband, once trachy was fitted I thought it would be easy to get her off the vent, it really does take a long time, his pressure of 22 is not bad, she was static on 18 for 3 weeks and she got a few infections along the way, they then upped her steroids and then started to reduce on the pressure, you need to get the 22 into single numbers so they can start weaning, she is now on 6 and weaning has started. We dropped off an iPad and head phones last week, so we video call her every day on it, just for a few minutes to encourage her. Feel free to contact me any time to more information x
Firstly wonderful to hear your sister is on the road to recovery. This is so helpful to know what the numbers need to be for weaning to start. No one shares this with us which can be so frustrating. did she jump from 18 to 6 quite quickly after staying static then? They keep telling us to keep off numbers but its so easy to get fixated on this!
Once she started moving on the number it went down by 1 or 2 per day, once they are at 8 they start to wean, my number is 07861579531 if you want to talk
It’s a very scary anxious journey your on. We are in exactly the same position as a family. At the weekend our relative was on 40% oxygen, 12 pressure and 5 peep and we even had a speech therapist call us yesterday asking about they like to talk about as and when they ween them off the sedation. So thinking they maybe turning a corner things turned in a direction yesterday his oxygen has gone up to 55% to 65% his pressure 15 and the peep remained at 5. This was another sleepless night for the family. The nurse also said he was on the max pressure of 15 so when hear people like your dad on 22 it really confuses but at the same time our relative is on 55% to 65% oxygen. It’s very difficult to gage from the numbers but I wish someone at the hospital would explain them to us. I would like to hear more a plan and road map to recovery rather they critically unwell all the time. Please stay in touch on how your father is doing I’m sure he will be fine.
So sorry to hear that just when things were going good it was a little step back. Praying your relative improves as these numbers do fluctuate quite a lot!
I had experience where my dad made no progress call in for second time and basically no chance of inprovement and then over course of few days he improved out of nowhere....that was after over 40 days on ventilator..he was receiving high support off ventilator pressure support was v high and that has come down massively..i think different steriods tried with my dad and they came up with a new plan which worked to reduce support..i think with this covid it can be case of trying different things and just hoping one works...hope your dad gets better
Hi all, Firstly huge thanks for all your support. I'be been reading with tears as the hospital just called us saying they are transferring to another London hospital because of capacity issues and that he has just been stable but static for 2 weeks. The doctor who called was so COLD - he told us he may survive he may not and when we asked him if he has seen cases where they pull through he said no?? But he has ben on vent for 4 weeks, trach for 2 weeks - 50 % oxygen and Peep 5, pressure between 18 to 22. I have seen so many stories where they do pull through. He said chances are slim and then said that's all I can answer for now. I have never been so hurt and heartbroken after a call like that from a consultant. They did the discharge and they are preparing for him to leave today. Are they giving up on him? I keep thinking as his setting not changing, the other day the nurse said he did 8 hours of breathing (with ventilator ) which she seemed pleased with. Wondering why the doctor today had such a bleak outlook? So heartbreaking to hear this.
I'm just reading through. My dad has just had his trachy today after being intubated for a month. Why are the doctors so negative. My dads moved hospital (because he was stable) the docs are so warm they said we treat then like out family and the nurses are just the same. How disheartening that they are being so cold! I've read so many story's of people worse than your dad and pulling through I also have experienced someone I know pulling through so think positive, its hard but it's going to help you out. I wish you the best.
Thanks so much the Doctor from the new hospital called saying he settled in well and that he is stable. She sounded nice. Thanks for your encouragement. I guess at the time it felt like another blow! Yup staying positive as we have on here some amazing people that have pulled through.
It’s not all negative hang on in there . If he well enough for a Tracky he has a fighting chance , he must of been stable enough in order to be moved also . I honestly believe most doctors give worse case scenario . I found the nurses where much more positive, after all their the ones spending full shifts with the patients not a few minutes here and there .
My dad was ventilated for 73 days back last March with covid and has a lot of up and downs , infections and kidneys failing . He’s been home since June with no lasting organ damage , although he has scarring on his lungs .
Hang on to the positives and look after yourself also x
Thanks, it's just the way Doctors share updates with us they say no positives ever! He has been static between 45 and 55 % for 2 weeks and not making progress. They say the longer he is in the less likely he will make it. Now they said he may have a strain on the heart.. praying for some news that's positive
Some doctors are definitely half glass empty, my sister was moved from our local hospital to another one a few hours away. She was moved on the 20 January and is now back at our local one from last week. Expect them to have a slight set back when they are moved, but I found it a good thing as they only move the most stable ones x
Hi. Just reading through ur story and please stay positive. My dad was in same position, he was ventilated for over 50 days! He had sepsis twice and a mild heart attack. We were called in to say bye once and another 2 times were told things were looking very bleak. Then all of a sudden he started improving and they started the weaning process which felt like forever. Ur dad has a fighting chance! I know exactly how u feel and it’s absolutely awful, but it won’t be like this forever just hang in there and hold on to the positives. The consultants always are negative we found that too, they would never say anything positive until he turned a corner then we were getting positive updates even from the consultants. Message me if u need to talk, my dad is now on a step down ward waiting to be transferred to a rehab centre cos he can’t walk yet but he’s 100% with it and mobility is only thing holding him back now xx
This was what i needed to see this morning! So glad your dad has made it through the worst and what a fighter he sounds! Praying he makes a full fast recovery now. What was the turning corner as I just don't know anymore. IF Oxygen went down they say pressure still high, if on a trach they say that does not mean he will make it!! I need to keep these stories in mind but its all such a nightmare. Now he has moved the facetime they do is when he was asleep and nurse said after 2 minutes 'my hand hurts!!' Sorry having a rant but i feel it was unfair they moved him when he is just trying to reduce sedation
Your literally going through my life right now I am completely the same as you it's so awful. the stories of hope keep my spirits high. The nurses and docs say they are hopefully for a recovery from my dad but then last night another infection. And he had gotten down to 30% making commands trachy fitted then all the way backwards. They are going to do physio today to get him coughing see how it goes,🙏 was your dad well before he had covid? Take care stay strong x
yes totally well.. only diabetes and asthma but both under control. Gosh I hope dad gets better.. when dad has infections after antibiotics he usually does get better. Fingers crossed! Whats are his stats now? Oxy and pressure? Nurse just said pressure 25 which is so high!
He has stuff lungs and really struggling with comming off sedation they've had to keep him sedated , his oxygen not to bad 35 but the pressure is high can't remember exactly because I've not written it down my brains fogs all over the shop but the nurse said it's a really high pressure
We never had any turning point for a long time, it felt like it was never going to end. But it does! Just stay strong and keep going and keep urself well for when things get better and he needs u. How long has he been on the ventilator for? Have they spoken about weaning yet? All I can say is it can get better so quickly, so just stay positive and take each days as it comes. Find out what ventilator he’s on, is it the spontaneous setting? The actual numbers of oxygen etc dont mean too much it’s more about what breathing they are doing for themselves. My dad just start improving and they could keep him on a less invasive setting on the ventilator, then he got a chest infection and was put back on full ventilator at night so we thought it was a major set back but it wasn’t, the next day he went back to what he was on before, then each day he got stronger and they switched him to a non invasive form of ventilation. The sedation weaning seemed to take forever as well. Has he obeyed any commands yet? Xx
Hi there! He has been on vent for 7 weeks and 3 of which is on the trach. I think they have put him on the spontaneous breathing vent from today to see how much he manages. You are right about the sedation weaning and its more frustrating that when he does wake the nurses don't call us. We have only managed 1 conversation whilst he is awake. I do know they are busy but i think that would make a difference to his recovery so really pushing for a call everyday when he is awake. How is your dad doing now? How long has he been on the vent? So nice to speak to someone going through the same jorney as you can prob relate to how agonising this whole thing is!
Hey, it really is agonising and the worst experience of our lives! I’m glad he is doing ok, it just is a very slow process so hang in there and things will improve. My dad is doing really well he’s in a rehab place now just working on his walking and building his muscle strength which is another part of the journey. But with regards to his health and breathing etc he is doing really good he came off the ventilator about 3 weeks ago. He’s been in hospital since 20th December and still has another month probably in rehab so it has been a very long journey. I hope ur dad copes well with the spontaneous breathing, and definitely try and get a zoom with him able to speak to him as that could spur him on and also would be lovely for u too knowing he can hear ur voice. Good luck xxx
I had an bad experience like that! It's painful, but what I learned is that if this hospital sends to other hospital at these stages, then of course they never see the progress when people get better? Hang in there and only trust God and pray! Hopefully a doctor at the new hospital will work hard and not give up!
Hi Priti, not going into detail but I was a covid coma survivor against all odds like a lot of warriors on this site. You have to stay strong yourself is the first step. Time is an healer and I'm sure your loved one will not give up the fight. I really hope he turns a corner. Have you tried calling the ICU manager opposed to the consultant for further advice rather than the negative consultant All?. All the very best.
He's sounding and looking hopeful. Don't give up on him. Trust me ! My daughter 32 was worst. They called us few times to put her on DNR. She survived!
I am so sorry you are going through this. My dad has been intubated for 3 days, I saw today when sedation was taken away (propofol) he responded so much better. A full day without it and just with Ativan when he starts to get upset or uncomfortable. The sedation seemed like it slowed his self initiated breaths, none when he came in and 100% oxygen and 20 peep. Today he has ranged from 5-8 peep and 35-45% oxygen. I felt like taking the strong propofol away helped him turn the corner today. I played music today and he loved it. Maybe try music.. keep your hope, know that he is strong and there is a chance for him to get better. I’m rooting for your family.
Hi. My aunts story is the same as all above. First week she was on the nasal prongs, second week the bipap. 3rd week moved to icu and sedated to put on the bipap mask. She then spent 3 weeks on a ventilator. She beat sepsis twice and got a tracheostomy last Tuesday 1st March. Doctors brought us in the previous Friday and wanted to give up. We asked to give her the weekend and on Monday they agreed to do the tracheostomy. She's off all sedation since Friday but going on 4 days now she hasn't woke. She is opening her eyes when she's moved but she's not focusing. Can anyone explain this? Amazing to see all our stories are so similar.
Hi! My dad has taken 3 weeks to make any kind of response and even they they still give little sedation to reduce agitation so hold on! So glad you got the trach done as everyone says that is a positive step forward! All the best and keep in touch. x
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