Our mum was doing well last week she was heading in the right direction and the doctors were even talking about doing a tracheostomy within a few days then she took a turn on Thursday and we were called in but while we were there she stabilised.
She has been stable since, no better no worse but spoke to a Dr this morning who said she didn't have a good night and they were getting to the point of not being able to help her much more.
They are waiting to speak to the microbiologists this afternoon to see if there is any other treatment they can give her as she's already on a few strong wide spectrum antibiotics and anti fungal.
I asked her if its possible she just needs time for her body to fight the infection and she said possibly but they are so negative as if they aren't holding out much hope.
I just wanted to ask has anybody else had a similar experience. We can't give up on her just because she's not made any progress since Thursday, surely they have to keep treating her to see if her body can heal!
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Today I received a letter giving an update on drugs given for covid. When I was ill last year I had dexamethasone as a trial. They now have added tocilizumab to the dexa and found it significantly reduces deaths. There is also an antibody treatment Ronapreve for those who have not produced their own antibodies. I am sure your mum's doctors would have considered these treatments but worth asking. They are not though 100% successful, but have a significant positive effect. My source is Recovery, part of Oxford Uni recoverytrial.net
They said they gave mum the dextramethadrone for 10 days and sarilamab which is similar to the other drug you mentioned I think. How long were you on the dextramethadrone? As she seemed to be doing well and only stopped improving when they stopped it.
She has an infection now that hasn't responded to the antibiotics she's being given and they seem to be giving up on her
I am sorry to read this, but am sure the ICU team have not given up. I am not exactly sure how long I was on dexa for , but know it was started just before I was sedated as remember signing the consent form for the trial. I was sedated for 4 to 5 weeks and assume I was given the drug during that time. I was lucky in that I responded, and had a trachy. I know that from the study they reckon 1 million lives worldwide have been saved by dexa treatment. Worth asking the drs again and to continue the treatment 10days does not seem long.Hoping your Mum responds soon.
We have just spoken to a Dr and they are going to try another antibiotic as she isn't responding to the ones shes on.
We did mention to the dr about continuing the dex but he said its a strong steroid which can compromise the imune system so its a fine ballance but I'm sure I read that it can be given for longer than 10 days. I will ask them to review their decision on this as it does seem when they stopped it she stopped improving 😒
Yes try again. They must know by now (I had it in June last year) the side effects and optimum time to give it. Check that website as might have more detailed info recoverytrial.net
Thankyou I will check out that info. Praying this new antibiotic works 🙏 and they said they have sent a sputum sample off to see if they can grow anything from that so hopefully they will get some answers and be able to give her the right meds to fight this infection
We were told she recieved a dose of remdisavere early on but then told she didn't have it so not sure if she did get it. She was on dextramethadrone for 10 days and seemed to be doing well while on it and since being taken off it has made no improvement. Rhe doctor said they only give it for 10 days as it can cause autoimmunity issues which exasperated infections so its a fine line.
She also had a shot of sarilamab to calm down her imune response.
We will never give up on her. The doctors don't seem interested if she's not .asking progress and are all doom and gloom and preparing us for the worst and comfort care. Rhe doctor we spoke to yesterday said we couldn't override their decision if they decided comfort care was the way forward which we were shocked to hear but then in the next sentence she said qere not there yet I just have to prepare you!
Hi. Tomorrow I can read through my clinical notes to see what the ICU team did for me as well as dexa. I know was given antibiotics, and diallisis, and my intake was being balanced by feeding tube and picc line. It was a long period before I came round 4 to 5 weeks. The team were amazed as prior to covid I had already been critical with a sepsis and was prity close then. The ICU did everything but I will look to see if there are any particular drugs they used beside dexa.I am sorry you seem to have had some negative 'bedside' manner, but I know my family were told on more than one occassion to expect the worse, and I think this is because they do not know how a pt is going to respond.
I know I would not be here now but for all the care given to me.
Sorry to hear about this worrying development for your family. When I was severely ill there were days when my family were told there may have to be “discussions” about how long I would be left in a coma (32 days eventually before coming round).From what I have been told it was constantly up and down, so there is always a chance corners can be turned and things move in another direction.
Looking at my discharge letter I see I was treated for both my covid-pneumonia and separate ventilator/hospital-pneumonia with “pulse intravenous methylprednisolone”.
I don’t know if that is worth mentioning to medical staff.
They say because she's already on quite a few antibiotics its hard to grow cultures to see whats going on. Hoping and praying the new one they added yesterday starts to work. She was doing so well a week ago!
While I know it may seem insignificant in relation to what you are dealing with right now, but blood tests on your mother - what are the protein levels?Infections cause a rapid depletion of protein, without sufficient protein
the body is unable to survive whist trying to heal and fight infection.
See my previous post regards my mother, infection and how the most simple thing was overlooked during the course of complicated treatment.
Protein is a basic building block, but when the levels are too low, the patient is like a hamster in a wheel.
**I not some crazy vitamin and supplement advocate by any stretch of the imagination - my previous / old post came out of what was going on with my mother at the time.
However, certain foods and high protein diets can inhibit the action of certain antibiotic treatments.
My suggestion is to read my old post linked below, then perhaps ask your mom's medical team about your mom's protein levels. They may be sufficient, or perhaps terribly inadequate.
You may find increased protein intake could have an adverse affect on the current course of treatment.
It is certainly a discussion worthy of having with the medical team.
My own experience is anecdotal and may not apply to your mother at all, but every stone is worth turning.
I will ask them what her protein levels are when we speak to the nurse next. We spoke to a lovely nurse over the weekend about nutrition and that we had looked into high dose vit C infusion as a positive treatment for fighting infections and she agreed with us but said its up to the nutritionists.
I don't know how we can speak to her nutritionist? Maybe I could email PALSto ask.
Any of the nurses should know who the various members of your mom's medical team may be - including the nutricianist.If you get no joy, take a different approach. Make your way to the hospital's kitchen. Speak to a chef.
They will know who the nutricianists are, and can in all probability point you in the right direction. You may get directed to the incorrect nutricianist, but they will get you to the correct one.
It's a somewhat unorthodox approach, but from time to time extraordinary circumstances call for an extraordinary measures.
I believe I may have been given the antibiotic doxycycline, as I definitely had it when I was later awake. Hoping too the new treatment will be effective.
This is such a difficult time. I agree with your other replies. There’s something more I’d add, and it’s less a reply to you, more a general response to several previous posts that have shown questioning feelings toward medical staff – which you haven’t. ICU consultants and staff are incredibly well qualified and experienced multi-disciplinary teams. I can’t imagine there’s any question that a lay person might ask that they don’t have to answer several times a day. However, some of them are bound to be better communicators than others, and some will establish more than others a better rapport with you personally. When I (74) was in a coma, my wife, a GP and hanging on in the ‘loved one’s’ relentless rollercoaster ride, knew all the right questions and understood technical information, but would never have challenged the expertise that she encountered – trusting it was the best way she could help herself through the period – fighting it would have severely damaged the rapport that she needed – the friendly and responsive phone chats were important for the shared healing process. However, when DNR was mentioned, she read the riot act even though we both have living wills. My thoughts will stay with you during this awful time.
Our mums life is in their hands and we have to trust they are doing everything they can to save her. Although there are numerous studies on the importance of nutrition and high dose vitamins, especially vit C for fighting infections along with zinc and vit D but they are not willing to try any nutritional treatments which is frustrating. When the doctor spoke to us last Thursday when we were called in he was giving us the prep talk on when to give comfort care rather than treatment and not carry out CPR should her heart get into difficulty. This conversation was not one we expected especially when only a couple of days before she was goung in the right direction and they were talking about a tracheostomy.
We told the dr under no uncertain terms were we ready to give up on her and that we didn't agree with them not performing CPR should she need it.
We spoke to another doctor yesterday with even less emotional intellegence than than the other doctor we had spoken to and she said we wouldn't have any choice if they decided to switch to comfort care but she said we're not there yet but I need to prepare you!
After reading lots of ICU stories from patients and families who have been in ICU for weeks and months fighting various infections on maximum treatment, so it's not beyond the realms of possibilities that she just needs time to heal and be given a fighting chance.
Do you know if we can override their decisions on comfort care and no CPR as this is freaking us out as she's only been in ICU for 16 days today?
I can’t answer your questions, but from my own experience both as a patient and also as a carer for my sister, how consultants handle palliative care discussions and respond to medical suggestions is important to me. I’d be surprised if a consultant would be prepared to adopt any treatment based on the request of a relative. What they can and can’t do is highly regulated. Any deviation from agreed practice could be disastrous. In ICU, every patient’s life is on the line – something the staff live with every day. A few years ago, while my sister was fully conscious and discerning, she decided to go into palliative care (give up on a hopeless situation), I was shocked by the stark bluntness of the consultant. On reflection, I think he was right to take that objective standpoint – no concessions to how my sister or I might have been feeling – just the relevant facts. My wife had to deal with the same objectivity when I was in a coma (she spared our children the details). No doctor would publicly question the practice of a colleague – the mindboggling achievements of ICU practitioners is built on worldwide multidisciplinary discussion and team integrity. Marty29 mentioned the update from Oxford Uni recoverytrial.net which I also received. If nothing else, it made me realise the massive global scale of research that is required before any new treatment gets approved. My wife ‘volunteered’ me for the Hydroxychloroquine (as favoured by Trump) trial, which proved of no value – the update fails to mention that it actually carried a slightly increased risk of heart attack! Stressed out ICU practitioners must find it very difficult to explain things when the only certainty is that of grave danger.
In my case and with hindsight (I was unconscious at the time) my wife and I have realised that a DNR, so easily signed up to in the solicitor’s office, is extremely unlikely to turn out to be a simple issue. So, we realise how important it is to discuss it at an early stage – in ICU, it could suddenly be critical when there is no time for discussion. Raising the possibility of palliative care is not an assertion that it is being planned.
I wonder if our loved ones, conscious or in a coma, rely on the ICU staff to convey our love, especially if we can't visit – a healing triangle.
However distant and anonymous I am, I hope you and your mum feel my concern.
Hi I have hope you have found some answers by now but if not here is what I understand of do not attempt resuscitation orders as a nurse in the UK (but not in intensive care). the family of the patient should be kept updated and consulted on a patients resuscitation status but the doctors can over ride their decision. This is because the doctor is in a better position to objectively consider what is in the patients best interest. These instructions are not made lightly and have to have a set time frame for being reviewed. Having a DNACPR in place doesn't necessarily mean anyone is giving up on the patient just that there is a limit to how far they will treat them. I hope this helps clarify things a bit. I don't have experience of COVID but I do know what it is like to have a loved one in intensive care constantly waiting for some good news. Wishing you and your family the best
It took my dad weeks to recover. He was intubated 28 days before being taken off. He was in septic shock too and he somehow survived. Please make themgive her time. This virus takes a massive toll on these patients who end up severely sick. Dont give up hope!! xoxo
My mums been intubated 16 days now which doesn't seem a long time when I read other people's experiences, some have been many weeks and months and still pulled though.We are clinging onto hope 🙏 ❤
When I contracted Covid about 7wks ago Ronapreve & remdesivir worked for me and very quickly.
I found myself in ICU six yrs ago, in a similar position to your Mum. That team turned around to my family and inferred that they had done all they could do and that it was now up to me. Few of the team had seen anyone overcome what I had and the awful combination of factors BUT they recognised I had to be given an opportunity to push back. Your Mum is over 20yrs older than I was at the time, so I know that plays it’s part - but being given time is so important. Ask for a second opinion if you feel you are being pushed into the wrong decision. 16 days isn’t a crazy length of time to be sedated either ( but I am not privy to relevant info).
We were told she was given remdisavere then we were told she hadn't been so its all very confusing. This time last week we were so hopeful she was going to be given a tracheostomy and on the road to recovery, then she developed the tear in her lung the next day which they treated by inserting a balloon to plug the tear and a drain to drain the fluid and then the day after that she took a turn where they had a struggle to oxygenate her and they called us in but while we were there she stabilised and was in 75% oxygen and on Sunday she was on 60% and they were considering lowering her sedation so they could lower BP meds but that didn't happen and yesterday the dr said he'd BP meds had been increased.
They have started her on another antibiotic yesterday so we are keeping everything crossed it helps fight this infection.
Its so disheartening when we speak to the doctors as they seem to havd given up on her now shes not making any progress and we feel she just needs time for her body to heal and we don't want to give up on her and from what the Dr said yesterday thats no our choice which terrifies us! We feel so out of control, its a living nightmare.
I believe that the antibody cocktail Ronapreve - which is NICE approved - was the really significant game changer for me with Covid. I was then on novel antibiotics & antiviral especially remdesivir for atleast a week - all IV.Your Mum’s O2 requirements aren’t excessive ( yes they are high).
The consultants are bleak and that is not a new thing. They travel in a very black & white world everyday, I guess. I hope your Mum turns a corner soon. Keep contact with her & encourage her, your voices can have real impact.
Last week she was down to under 40% it was looking so promising, she did have sarilamab for her imune over reaction and the dextramethadrone for 10 days, it seems since they stopped the dex she stopped improving, possibly a coincidence but the doc said its a fine line when using steroids as they cause autoimmunity which is not good for fighting infections. I hope to god the new antibiotic works or they get some insight into whats going on from her sputum lab results 🙏
I just wish I could get some answers on whether they can override our decision not to stop treatment, I dont know where to turn, its making us all sick with worry
I had H1N1, bacterial and viral pneumonia, sepsis, kidney failure, very high temp, blood clots in my lungs, was in a coma and my brother told me that chance of survival was very low. I didn't have a trach but was intubated for 3 weeks. However, they found the right drug...Meropenem or as my GP called it "bleach for blood" - I don't know if they have tried that?
I don't know if they have tried it, I will ask the nurse if she can find out from her notes, Thank-you. It's so hard talking to the doctors about her treatment, there's a fine line between asking questions and questioning her care!
Never be afraid to ask questions or if you are not happy, including abou her care. Get an appointment with her DR to find out what is going as you are very confused. It's your Mum...it is only normal you want to know what is happening!
Im writing a list of questions to ask just now. I did make a request through PALS asking about the medication and treatments she is receiving and although the doctor called and discussed which is very distressing talking to the doctors I didn't get anything back in writing which I requested which would have been clearer to understand!
Are you in the UK as I know treatment protocols differ in various countries?
I am in the UK but my family took notes whenever they met a Dr. I am not aware of ever receiving a written summary, I think they may be too time poor for that - just updating patient records instead. Good idea to prepare a list of questions and try to group them together under different themes - that way you will feel more prepared. Also different NHS trusts operate slightly differently.
Please please please keep hoping and praying. After being told my brother wasn’t going to make it his trachy is now out and I had the most amazing 90 minute conversation with him yesterday. There IS hope. There is belief x x
Really good news, glad he is on the recovery path now
Hi , if it helps here is my timeline. End of jun 20 tested positive for covid, immediately put on dexamethasone and ramdesivir. Also put on antibiotic Flucloxacillin. Beginning of jul 20 I was put on a ventilator, and given dialysis. Noradrenaline to activate brain, but also propofol and alfentanil for sedation.
Mid jul 20 given morphine and midazolan and atracurium a muscle relaxant.
Towards end of July 20, started to recover and weaned off ventilator and trachy inserted. Also given treatment for blood clots
Early Aug 20 Swedish nose fitted. Mid Aug 20 trachy removed.
End of Aug 20 transfered to ward before transfer to community hospital
Quite a long time in ICU before recovery enough to transfer.
Hello lovely! Stay strong for your mum and keep talking to the doctors! I had pneumonia alongside covid last year and as you know was not ventilated but on cpap and on dexamethasone! I still struggle a year later but I am home and trying to live as normal a life as possible! Keep talking to her even if it’s on tapes/cds that you send in or on FaceTime, keep willing her on, I’m praying for you x
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