Hello, I’ve stumbled across this amazing site and wanted to connect with fellow Covid family members of those with severe ARDS on ventilators (or those who have have been ventilated for long periods), in what is the most devastating time of my life.
My Dad is on Day 12 now of intubation. He previously did CPAP for a few days and was fighting it at home for 7 days.
He’s been proned whilst ventilated, but complications have included pulmonary embolism, following a CT and it seems like a step forward then a step back. He was otherwise fit and well previously, never been hospitalised before.
He’s on 50-60% oxygen presently, but this has varied. At one point they tried to unparalyze him and put him on auto mode as his CRP was coming down and he was afebrile, but these have creeped back up again, so they’ve increased sedation (and restarted antibiotics).
I wanted to know if any people in the same boat had had any luck with trial drugs- they are only offering corticosteroids at his unit and don’t feel he’s suitable for this anyhow. Are they still proning? It was helping initially, but they decided to stop for whatever reason and explained there are risks in continuing it.
How often are you calling ICU? Do you get to speak to the doctor or nurse much? Any suggestions to stay sane?
We are doing prayers and trying to keep a diary, but every day is a real struggle and as a family we are all recovering from Covid (myself included).
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How high/low has your Dads oxygen got? Has it went high again after being low?
We are day 17 of symptoms but day 8 in ICU. He’s had increasing CRP, atrial fibrillation and now on dialysis. Been proned almost daily for periods of time.
He was a candidate for the trial and we’d decided to go ahead and then today he’s taken a turn and he’s no longer eligible.
We are getting a once a day call from ICU doctor and I phone in the morning just to make sure he’s had a stable night. I am living constantly on edge and absolutely in fear of calling and getting bad news. I pray everyone recovers xxx
He’s been up and down. It’s been 75%, 80% 90% then. 50, 60, 45, then higher again. The numbers depend on the ventilator setting too and the PEEP. I used to get excited when it came down after proning, but now I try not to read too much into it and ask for the overall picture.
I wish they had started him on some trial drugs earlier, but now they are saying he’s not a candidate for them and they only have corticosteroids as opposed to the 4/5 other ones?
I believe that we could give our family members a real boost if we could hold their hand and whisper in their ear. We are helpless and can’t do anything for them.
That’s good you are getting a daily call from the doctor-we have maybe had it every 2/3 days. We have been speaking to the nurses more, but they obviously aren’t doing the overall management, but at the same time they are doing more of the looking after, so it’s nice to hear their voice too I guess.
Keep strong and positive. We need to send positive vibes to our families and to the teams looking after them.
I break down regularly, but then try to think what my Dad would want and that he wouldn’t want to see me getting upset...xxx
My dad has been up and down too but this has been a jump from 60% yesterday to 90% today. They aren’t sure why and he’s not well enough for a scan so I’m just praying he can get well enough.
Dad definitely responds well to proning but I’d expect that as it opens the diaphragm for more air and his lungs were a mess. But what we really need is the lower oxygen on the back!
One nurse very kindly put the phone to my dads ear and I gave him some words of encouragement, might be worth an ask? Maybe not always possible and not sure what he would have heard but glad I could do it.
What’s the plan for your dad going forward? Is it still really taking it day by day? X
Keep the faith! Maybe it’s just a lapse and it will bounce back soon. Is he proned now? What are the other obs saying?
That’s nice you managed to get the phone to your Dads ear. They’ve been very firm with us and said no communication atm.
I’m not sure tbh. Nobody knows and this seems to be the get out clause for most conversations with the doctors: “it’s a new disease, we don’t really know and need to take it day by day”.
The thing is there is no cure to the virus, but then they are treating pneumonia’s/ards/secondary infections/pulmonary emboli on someone that is getting weaker with more exposure to secondary infections?
They keep reminding us that prognosis remains guarded, but they are providing all the support possible -antibiotics, sedation, analgesia, ventilation etc.
He is proned now. I’ve just phoned and it’s come down to 70%. He’s been managing his own blood pressure and apart from a bit of a funny heart rhythm his heart has been OK.
He is on dialysis too.
His CRP (infection markers) were rising all week but not sure now I didn’t have my notepad on me last time the doctor phoned. How are your dads looking?
I really hope he becomes well enough to get some of the trial drugs !
I’m praying for all the families encountering this it’s truly awful xx
Hi, I’m sorry but what trial are you talking about?My dad had Covid, now in icu, been on ventilator since Jan 9(3 weeks today). He was proned, a fib, dialysis now, kidneys not working and still in a coma. Has had a cough every day(good sign), but scores poorly on the gcs. The waiting and praying for dad to wake up is mentally exhausting. I held his hand today, said many prayers with him, made him hear music and has pictures of our family on his wall.
Don’t know how long or if he will ever wake up from a coma. Not sure what this trial is that you are referring to. Can you please let me know.
I am so sorry to hear what you are going through. My husband is in the same situation with lots of ups and downs. He is in ICU for 5 days now and he has had complication with his heart, lung and kidneys. He is diabetic. I call the nurse everyday 2-3 times and one nurse call me everyday to update me. It's very scary and our hope is in the lord. He is put in prone position when he needs it not everyday. His oxygen level is high and low. It is very hard for our families. Hoping for the best
My wife always said that an hour waiting outside ICU was like a day anywhere else, she dreaded being there and she dreaded not being there.
The emotional rollercoaster of ICU drains everyone of energy, keeping a vigil waiting expectantly for something to happen is awful whether you are outside the ward, outside the hospital, sitting at a bedside or sitting at home, fretting.
My wife said she waited at my bed because although she wanted to, it was also because she was terrified that something would happen & I would take a turn for the worse or die when she wasn’t around. It must be awful if the last interaction you had with your loved one was combative or hostile, guilt snaps at everyone’s heels mercilessly.
My wife said she couldn’t make sensible decisions - she was embroiled in the awful soap opera of what was going on. She got to a point, in fact all my family got to a point were they had to take breaks - hospital food isn’t all its cracked up to be either.
She also realised she needed to take exercise, it gave her time to work out her feelings and raise much needed endorphins.
Sh found everyone’s contrived optimism really annoying - infuriating even - she found she had to have realistic optimism - people mean well when they say It will be Ok but that didn’t really help her with her emotions - in fact it made it worse - she wanted to ask them since when were they a ICU expert. She said that having a critically ill husband was a roller coaster ride. One minute optimism filled the room only to be sucked out as soon as the consultant did his/her daily summing up.
I was often brighter in the morning and would dip at night - so my family started to anticipate the early hours call saying they should come and say their goodbyes.
She started to ask very specific staff about my wellbeing - certain staff had a poor sense of emotional intelligence whilst others were brilliant - ask who you are talking to if you phone in.
Controlling the barrage of phone calls and messages was a task - a good family friend took on this job - disseminating the daily update of information about me to who needed to know.
I know that many relatives will not have the dubious luxury of talking face to face with medical staff or seeing their loved one at this time. You may have been spared from seeing things that you will never want to see. My wife is traumatised 4yrs on by the first time I was proned for instance.
This forum is a brilliant forum - there is a network out there - look for support groups on icusteps.org
I am AKASepsurs wife and I truly feel for what you and your loved ones are going through. The only thing I can say to you is that it really is like a rollercoaster. Their condition can change hourly and their levels of support needed will keep going up and down, as you are experiencing. This can go on for quite some time. I got obsessed with every gas reading they did and with all the oxygen support levels etc etc, it's only normal. The doctors and nurses will be doing everything they can to care of your family member and it's a waiting game while their body's fight this virus. Try and keep strong and take care of yourselves because it's easy not to eat or sleep properly, which makes it harder to stay posative. I saw my husband proned and it is something that I can't seem to forget. But take comfort from the fact that he wasn't aware of what was happening at the time and that it really can help their situation. I can't imagine what it is like to not be able to be with them, but even though I was there I think the whole situation is out of our control and it truly is a traumatic experience for all. I'm so glad you've found the group and can take comfort from people who really understand exactly the emotions you will are feeling right now. xx
I couldn't cope with all the messages and phone calls, even though they were well meaning. A close family friend used to send an update to everyone once a day. I gave him everyones number and he included them all on one text. He explained I was finding it difficult to reply at that time. It was such a relief. I was very lucky because I could go in to see mu husband. I was advised to write a diary , which I did nearly everyday for 2 and a half months. It's really useful for the patient because they don't really know everything that has happened to them and sometimes can't really believe that they have almost died. It took a year almost for my husband to really beleive it, even though he had to learn walk and eat again etc. He said it was like everyone was talking about someone else. The patient's experience and the relatives experience are totally different. Myself and my youngest daughter (12 at the time) have been left traumatised by what went on and have both had to have phycological help, where as my husband has been effected in different ways. Any procedures he now has, it's like his body goes into a bit of shock. Everyone is different but a lot of patients are effected by the dreams they have while under sedation because they can be so disturbing. Stay strong.
My partner is in a vegetative state currently and due to not being allowed to stay with him, I’ve left a spare phone that I FaceTime everyday, most hours of the day to keep an eye on him and keep him entertained. Maybe you could do the same for some reassurance for yourself?
Im sorry to hear about your partner and hope he makes it out of this state...
My Dad has an iPhone and used it when he was first admitted, but now on the ventilator, the battery is finished and nobody has charged it (the charger is there).
Do you think it’s a reasonable request to ask someone to charge it and enable FaceTime/video chat? We can’t speak to him, but seeing him might help I guess? Or maybe it causes more distress? Do you get comfort from it?
Thank you. You could ask the ward manager to plug it in charge? I do that with my partner and they are happy to do it. It gives me comfort to see him as I can speak to him, play him music etc so he’s not bored
My Husband today is unsettled and the lady I spoke to this morning is a virologist. She told me it' s how it will be with ups and downs untill his body recovers and he is sedated for his body to recover. We have hope.
That's exactly what it will be like while his body is fighting it and getting better. Nothing prepares you for the rollercoaster but it is amazing how you do cope at the time. I had days when I felt really strong and posative and then days when I crumbled. I look back and am amazed at how strong I was. Hang on to that hope
We didn't have that much support afterwards apart from a follow up 3 months later. Our hospital was brilliant though and provided physio when the patient has left hospital, not all hospitals do that. Physio is really important to recovery. That's when we found an ICU steps group out of our area and got some advice about what to expect in recovery and what financial support we could get. We were both self employed and we had to close our business. I had to look after my husband a lot when he came out, as he could hardly walk and was very weak still.I had to wash him and made sure he was eating the right food to build up his muscles again as he had 90% muscle wastage. This happens very quickly when they are on life support. Our family and friends helped us a lots, practically and financially. Our life changed overnight, as yours probably has and I don't know what we would have done without their support. You definitely find out who your true freinds are in these situations. There are some amazing people around, sometimes the people you don't expect.
I know you’re exact feeling. My dad too is in ICU on a ventilator from COVID. He’s been sedated for 4 weeks now, and we’ve been living this nightmare with him. All I can say is take each day as it comes. There will be ups and downs, but make sure you let yourself have a bit of a rest as the anxiety can be absolutely crippling.
I would also strongly advise to stay away from the reading/watching the news/media as it can make you go crazy! So much mis-information out there...really doesn’t help the situation.
We get a call from the dr at least once a day, they have a really good system at the hospital and are really understanding of how we are all feeling.
I do hope things get better for all of us. Praying for you and your families!
Yeh I’ve come off Facebook and am not watching the news, apart from some bbc website updates.
The daily death tolls are really hard to take and there’s so little on the recoveries of long term ventilation-I was hoping to read more from Italy and China. We know the odds aren’t as favourable, but still hope and pray for a miracle.
Yeh we call regularly, but it’s just very hard. The icu staff are great and working in a really tough environment, but it doesn’t make if any easier for us. We are trying to keep strong, but it’s very up and down as to say.
Praying for all those suffering and their families.🙏🏽
I'm in the same situation, my mother has been intubated for 8 days now. She hasn't made any improvements since she got there but has not gotten worst, i keep receiving negative news every time i call the hospital as they say she has not improve and its not a good sign. I'm catholic and pray every day, i have lots of hope and faith that she will get better. Did your dad improve right away into intubation or did it take a week/s before you received any positive news of improvement?
Please hang on in there and take every day as it comes. Your mum is in the best place. Keep a diary of her oxygen levels, blood pressure etc and try and track the small progresses.
My dad was always critical but stable until he got an infection and had a septic shock. He’s then been stable again and making improvements each day. The next hurdle we have now is him coming out of sedation so he can be completely weaned off the ventilator. We are praying so much and have so much hope.
Thank you Chanlib, im staying positive and trying not to think about the future. Hoping that your father is off the ventilator soon. Sending you positive energy and thank you for your kind words.
How is everyone today? Hope some of you have had some positive news?
We’re on day 12 in ICU. He had been making really good progress, CRP came down, oxygen is down to 50% on his back so no longer needing proned and managing his heart and blood pressure.
I had a different consultant today though who was quite straight with me thag he thinks he isn’t making the expected progress and it’s 50\50 right now and could go either way. That’s really got me down as in my eyes compared to last week he has made great progress. He even breathed on his own for 7 hours today! Not sure why the consultant was so brash about it but they are the experts. I’m desperately worried and praying they all come out of this recovered xxx
Had today’s update from the nurse his temp is down and his heart rhythm back to normal but high BP still a concern. They think it could be anxiety as the sedation has decreased quite a bit and he’s been moving and reacting. Oxygen stable at 35% overnight.
Anyone else had any updates? Such a lovely day outside I’d normally be out and about and visiting my parents but I feel totally disabled by anxiety this weekend that I can barely sit in the garden. Xx
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