He has been in ITU for 4 weeks, had a trachy on friday and has been stable but his oxygen requirement crept up to 70%.
They had him on the cpap mode on ventilator last night till this am but he got tired so they switched the mode to give him more support but his oxygen requirement is now 100%!
They said they will try wean him down from this and he has had some chest physio but I'm really worried he is needing 100% support as the most he has needed before is about 80%
Anyone else had anything like this?
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Yes my husband was the same, they had to be so careful with everything they did because it would just send him backwards. Cpap can make them very tired though. They had to introduce everything so slowly with my husband but he got there in the end. These set backs are always so worrying, especially when they have come so far, but from our experience the rollercoaster carries on for quite some time. It's not always straight forward as they are getting better, it takes time. I bet your next phone call will be different again. Take care
It took a couple of weeks to wean him after waking up. they had to build it up and sometimes he would go backwards. I did'nt have input as such because it was out of my hands and in the end I realised know matter what i did or said it would run it's own course. I remeber expecting his recovery to move quicker than it was doing, it felt like forever.
Yeh i keep saying to myself that I’m going to try and do something productive with my day- aside from worrying and praying, but then I get one of those calls and I’m just broken. I don’t do anything.
I am in this same cycle. I haven’t put real clothes on my ten month old daughter in like a month. She’s just perpetually pajama clad. It’s getting warmer where we live and would be great to go for a walk but I almost never do because I’m living in fear of the phone ringing!
I’m here in solidarity with you. I tell myself I just need to pick one small thing a day and my goals just keep getting smaller...like oh yay I brushed my hair today, nailed it.
Hang in there, stay strong. We will get through this.
I know, it's even harder to take when you have had small signs of recovery. Also the way each doctor delivers the information can vary so much. I would hang on every single word they said and the tone in which they said it. My husband was in a coma for 2 months and in ICU for 90 days and the whole time was a massive rollercoaster, it's exuasting isn't it and it has a profound effect. I really feel for you and hope your starts making slow but steady progress again. Take care of yourself too. x
You're right about hanging on to what the doctor says. They always tend to have a very wary tone which makes me so anxious that sometimes i dont want to talk to them x
I really don't know how he came through it, the doctors and nurses in ICU called him their miracle. He had so many peaks and troughs I couldn't count them. Even when he was breathing for himself totally and making really good progress he had to go on a new antiviral and had an awful reaction to it. He started to have seisures and bit through his tongue, it was awful. I remember him getting upset and saying 'I'v got a mountain to climb, how am I going to do it". because he couldn't walk or anything. But he did do it, with a lots of determination and physio. The whole time I was in some kind of wierd zone, I'd be quite calm sometimes. But I would have some days where I would find it easier to stay posative and other days where I thought it was completely hopeless. As you know, it is so hard to describe the rollercaoster of emotions to anyone who hasn't experienced it. I would try to do things that made me feel better. Take a little exercise if I could ( mainly walking the dogs), eat properly even if i didn't feel like it and try and get sleep when i could. That's all you can do, it's just a waiting game of ups and downs, but the ups and downs get less and less. You'll look back and think how the hell did I do that, you won't realise it but you are stronger than you think. Keep putting one foot in front of the other and try and keep it in the day if you can. xx
My Dads been in icu for 4 weeks now...he was progressing well. Trachy done, reducing sedation, on cpap mode, opened his eyes and then they spotted a minor bleed at his trachy site...
Back to theatre, GA, now fully paralysed again, ventilator doing all the work, high oxygen demands and heavy sedation...so heart wrenching for us.
Doctor called with a glim outlook-same doctor who’d given the glim outlook 3 weeks ago before the improvement stage.
I just hope and pray for Dad and all others suffering in this surreal, nightmare like world we now face.
The likes of Sepsur give me hope that they can overcome the odds, but then you watch the news or get a negative family/friend message and you are back to crying. I’m trying to stay strong but really struggling. Hope you are doing better than me x
Gosh I am so sorry that all our loved ones are going through this, it's horrible and I just find it so hard to cope with the ups and downs
The doctor called and said high oxygen requirement could be due a chest infection, they have started antibiotics, could be a lung clot but he is already on a heparin infusion as they found a clot elsewhere or it could be secretion so they have given him some chest physio.
I am praying that these things they have started today help and he can come back down x
My husband got secondry infections which was like a nightmare at the time. He would improve and then something else would go wrong. I remember having a call from the doctor in the morning to say that my husband had turned a corner and I was absolutely elated. By night time I had a call for me to get staright to the hospital because they did't think he'd survive. The next day he was more stable. I ended up dreading having meetings with the consultants because everything changed so much. Just hang on in there and try not to watch too much of the news and programs like that. I used to try and watch light hearted things and tried to avoid talking to negative people, The are well meaning but don't always fully understand. Sending you loads of posative thoughts. xx
Just a small update, they gave dad a humidifier through his vent which has helped and he is down to 65-70% which i know is still high but a relief he isn't requiring 100% oxygen anymore.
Nurse said he tends to require more after repositioning.
They have him on the SIMV mode on ventilator with a peep of 8 and PS of 10 so nurse thought they might need to adjust these to help him with oxygen..
I'm praying that today is a good day for dad and all your loved ones and that we all hear some positive news today🤞🏼 xx
Thats really good news. My husband was the same, he was so sensative to any repositioning, the nurses used to be nervous to move him at times. Your dad is strong that's for sure, and I hope he has a good day too. Try and remember, sometimes a good day is no change at all. Best wishes to you and your lovely Dad. xxx
So sorry your Dad is in the situation, it’s horrendous. Firstly oxygen levels do tend to go up after a tracheotomy. I was told it’s because they have to lie them flat for a while, also ventilator requirements go up because they can inhale blood during the process. Weaning can be incredibly slow but is different patient to patient. I’ve heard some weaning in days, for my husband it has been 12 days and they have said will take many many more weeks. It depends on how critical they have been and how much damage the virus has done. My husband was at the brink, we were called in to say our goodbyes at day 8 they were so sure. Day 36 now and he is still here, he had his tracheotomy 12 days ago and is now awake for some of the time. Profoundly weak and can’t move much. They told me they are less concerned about oxygen levels (they tend to go up and down depending on the work they are doing on the ventilator. As they get them to try and do more of the breathing themselves using the CPAP mode it’s more tiring. You have to try and take things one day at a time. It’s so hard when our lives are spent waiting for that daily phone call. Mine can come anywhere between 12:30 and 5, so I tend to do any shopping or exercise first thing then I potter around the house or garden whilst waiting for the call, dog walk then usually early evening after call. For the first 2 weeks I did nothing, now I give myself one task a day - could be gardening, or washing or doing some hand weights, something simple. We go to bed late, usually 2am as they kids like to sleep all morning so they don’t have to wait too long for the call. I’m letting everything go, bed times, schoolwork etc and just letting them do whatever they need to do to get through this. We are also making a video diary so if and when he gets to the stage he can have his phone back and is strong enough to focus and hold it he can see what the kids have been doing so he doesn’t miss that time. Prepare yourself for this going on for some time. I was told to wear a mental health crash helmet and it’s so valid! Wishing your Dad a successful recovery x
Thank you for sharing and I understand the small tasks, I work in healthcare so still having to come in to work which in a way is good as keeps me occupied but there are days when I just cannot face it.
Pleased your hubby is making progress and sending postive vibes your way xx
So just had update from the doctor who called yesterday too.
She said dad's oxygen requirement is at 80% and that they're very worried about him as he is not getting better.
His CRP has gone up from 44 to 178 over 2 days, his chest xray looks worse so likely infection in the lungs but they don't know if it is covid or bacterial or a combination.
They started him on antibiotics yesterday, he is on a heparin infusion which would cover him if it was a clot in the lungs and he is getting chest physio and humidifier for his secretions.
I guess it's a waiting game and praying hard these treatments work, I have to believe they will.
If they don't, she couldn't tell me what would be the next plan. Just said at this point we don't know if he will get better or won't.
I just feel i can't give up but when they say they are worried I feel like they have given up
Oh my god you have hit the nail on the head with what I have been hearing from my mom's doctors and nurses too. She has been on a ventilator now for two weeks. For a while she was making very small baby steps in the right direction but now seems to have plateaued. They have turned off sedation for about a week now and she is not waking up. I personally think she just needs more time. But some of them sound SO DAMN NEGATIVE on the phone that it makes me feel like I'm insane for having hope here. She had a bad two days this weekend, with a GI bleed, her heart back into a-fib, and a fever and bacteria in her blood. Her kidneys are still not working either so she is on dialysis. When they give these bad reports they sound exactly like they have given up. Like I'm just supposed to say "oh well, yeah you're right, it sounds like she's in bad condition I suppose we should just give up now?" I get so angry. Miracles happen everyday and why shouldn't our parents be one of them? I have been reading about covid patients like my mom being on life support for 30 days and then coming back. So why are they so down after two weeks? It makes me really upset. Edited to add: her fever is gone, and the afib is back under control. And yet I still feel like their feelings through the phone are this is a lost cause, though they haven't said those exact words.
I know its so hard, my dad has been on a ventilator for 4 weeks and this is the 3rd 'we are really worried' discussion I have had.
He has come a long way in the 4 weeks in terms of being on a very small dose of sedation now, had the trachy on friday and was making good progress until yesterday, which is when his oxygen requirement went up and it looks likely he has an infection in his chest just don't know if it's bacterial or a 2nd attack of the covid.. can the covid attack again, does anyone know?
Hang in there with your mum, it's a rollercoaster but keep the hope, it's all we have x
Yes I have had a few of those conversations too. Where is your Dad? My mom is in Boston. That is a good question on the covid attacking again. Right now they can't even answer me if my mom is still fighting the virus or if this is just all the residual effects. They just don't know enough about it yet. Which is just another piece that is frustrating for all of us who have loved ones dealing with this mess. One thing the doctors shared with me that they have learned is - even with people who have recovered and gotten out of the hospital can tend to have recurring fevers which I thought was interesting.
Yes lots of unknowns with this virus which makes me think even more reason not to lose hope as we just don't know what to expect and guess the doctors don't either.
Hoping my dad will fight this secondary infection and prove what a brave and strong man he is xx
Dad took a turn for the worse last Sunday and they started him on antibiotics which thankfully have worked.
Tuesday evening the stopped his sedation and put him on cpap mode on vent and thank god he is doing ok on this.
Since coming off sedation he opens and closes his eyes but the Docs want to do a CT scan of his head tomorrow as he isn't as 'awake' as they would expect him to be (touchwood no kidney issues at present).
Nurse today said he isn't very responsive but when we have videocalled over the last 2 days he definitely seems to hear us as he will blink and move his mouth as if wanting to talk. Nurse yesterday said he was a bit more alert in the afternoon and squeezed his hand but today apparently not.
I'm praying the CT scan doesn't show any complications and that maybe he just needs some time to be more awake?
He is stable, CT scan of the brain came back normal thankfully but he is still not very responsive, opens eyes and sometimes moves his head towards wherever voices are coming from.
They have managed to wean him to a pressure support of 5 on cpap mode which is great, he is still however needing about 50% oxygen.
They took his central line out yesterday and put a cannula in instead as he is spiking a fever again. He is on 3 types of antibiotics but I'm feeling anxious about his fever. He is doing ok but I just feel quite anxious and scared and can't shake it off.
It's his and my mum's 40th wedding anniversary today💜
My mom is also doing baby steps towards recovery... slightly open eyes, open eyes, tracking people, very alert eyes, nodding her head, saying yes and no, moving her hand... that's how it's going for her... very slow and not always linear as sometimes she's tired and doesn't want to interact.
Aww he’s going in the right direction many positive s there to take in . My dad also started with a high temp last night but settled today thank god. It’s scary because they are just laid there like sitting ducks for infections . My dad is on nearly week 6 now on ventilator, he’s stable and responding to nurses etc on no sedation now for last week.
Just had a FaceTime with him he looks so much better , but Still a long way to go as he’s been ventilator dependent so long they have started weaning him now tho . He’s on very low oxygen now are waiting on the physio during up his rehab plan tomorrow . It’s more about his recovery now am hoping but know Icu is very up and down so don’t want to get to excited just yet xx.
Aww so happy to hear this but totally understand the not wanting to get excited.
Docs just called to say they're managing to wean him on vent settings and that they might do a MRI in a few days as he isn't waking up like they would like him to.. (sedation stopped last tuesday evening). I really hope it doesn't show any complications and it's just that dad needs time to wake up x
Fingers crossed for you it’s nothing , a lot seem to be taking time to wake up. My dad is now awake and he looks so frustrated on FaceTime like he wants to say something. After five mins today kept Turning his head away from us . Nurse said that normal he won’t know how I’ll he’s actually been and his mind wants his body to do things that aren’t possible .
He’s been there 6 weeks Tuesday so a lot of muscle waste .
So upsetting to see him like that and wonder if he feels we have all abandoned him so many thoughts going through my head xx
Hi , My husband was exactly the same , it's so distressing to see them like this . He probably wont even remember any of this Facetime, please don't feel guilty about abandonment , as nothing could be further away from this statement - easy to say, as I like you have had 7 weeks on the roller coaster of emotions . I was told by his consultant they have been given so many drugs to keep them paralysed it takes a long time for them to come back .
Yes, he was taken off sedation over 2 weeks ago, he was just staring through us, it was like he was in a trance and in absolute shock and so disturbing for us . A couple of days ago he started to focus and was talking more, but is highly delirious . Yesterday was incredibly hard for us with the confusion and the things he was saying . Today he was much calmer and the confusion had subsided quite a lot. Today we had a few smiles , it was a beautiful sight .
Aww I can imagine the relief and warmth you must have felt when getting those smiles, I'm so pleased he is recovering and l hope we see some smiles from my dad soon.
No, he is now in recovery, he moved into recovery 6 days ago but being looked after by a HDU team and the critical care team check in on him, several times a day .
Oh I can totally imagine how hard it must be for them but also the way you are feeling but don't feel bad, my friends FIL was the same apparently but then was ok after a couple of days.
Your dad just needs time I am sure xx
How long did it take him to start responding after stopping sedation?
He was off sedation about three days responding squeezed nurses hands etc. Day 6 off sedation and we FaceTimed and he recognised us . This week he smiled nodded at our questions , responds to pain etc.
This week he’s a lot more with it just his body not catches up to his mind yet . 10 days off sedation today and he fed up already , not being able to communicate with us .
Still going to carry on with the calls hope they spur him on to improve .
My dads 65 and very impatient can’t just imagine what’s going through his head xxx
My dad has been off sedation 5 days and opens and closes his eyes, yesterday they said he wasn't doing anything else but on friday evening the nurse said he was a bit more alert and had squeezed his hand but then he hasn't done anything last 2 days so I don't know.
My dads 63 and yes generally quite strong willed so hoping us calling him and encouraging him will give him some motivation and strength x
Mom is 55 is still not doing all the things your dad is. It took her 20 days alone to start showing signs of conciousness. So I feel your dad is very fine 👍
So hospital called, dad was due his MRI today which has been delayed as since this morning his Sats started dropping and oxygen requirement started going up. They are trying to investigate why but it means they have had to switch him from cpap to full ventilation and lightly sedate him again. Oxygen req is 60% from 45% and his crp markers are coming down. They still want to do MRI later but I can't think why his sats started dropping suddenly, he was pretty stable when i called at 7am today and really good last night, cpap mode 0 pressure support and peep of 10 but now ventilated.
Is this normal to need to go back on ventilator from cpap?
I'm going to stay positive but am dreading the call from the doctor I'll probably get later telling me it's not good.
So doc didn't call so I called them and she didn't say 'we are worried he won't make it', which we seem to get when there is a blip so felt relieved about that.
He is moderately sedated and ventilated to give him a break and we hope and keep positive that a little break and he will have the energy to be able to then have another go at weaning off the vent 🙏🏽🤞🏼
Hey, shes doing okay, at 70% oxygen today so down a little from yesterday. They think they’ve identified the infection now so started different anti-fungal medication.
They’ve said she has taken a few breaths by herself today and is breathing with the ventilator rather than against it. Tbh, I’m not really sure what that means, but she seems to be stable and slowly going in the right direction.
Dad has had a bad day, his oxygen requirement has been between 45 -60% and docs are worried that he is taking such big breaths that he is doing more damage to his lungs than good so have put him back on sedation and paralysing agents to fully control his breathing.
I'm so upset about this.
They're worried about his high oxygen requirement as no infection or anything at the moment but they are starting him on diuretics and a high dose 3 day course of steroids but don't know if any of these things will help.
I'm so upset as I thought we were on our way to recovery and now feel we have gone backwards 😔
I know how absolutely gutting it is when it feels like going backwards rather than forwards. But hopefully, the sedation gives him another chance to regulate his breathing when they try again.
Its such a painful slow recovery process, but he’s still fighting and still going. Keep strong x
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