Mum in ICU with covid on a ventilator and dialysis

[djsioux]

My mum is in ICU after getting breathing issues from contracting covid.

She is on a ventilator heavily sedated and they discovered blood clots on her lungs and one in her heart chamber.

She is on dextramethadrone and she recieved sarilamab, we were also advised yesterday she had a dose of remedisevere which they initially said they weren't going to use, I've heard scary things about this drug.

Shes also on dialysis

She was admitted to hospital on 26/11/21 and was initially given oxygen but the next day her breathing deteriorated so she was put on CPAP but then the next day she went into ICU and was ventilated. She was given a CT scan that day which showed the blood clots which hadn't been picked up by the xray on admission 2 days prior.

On the Monday we were advised her oxygen has been dropped to 55% and she was passing water well so kidney function looked good, we were thinking things were going in the right direction. The next day we spoke to the nurse who advised oxygen requirements was now 45% but she had been put on dialysis

The next day we were advised she was having her sedation reduced and she took some breaths but she was struggling and they sedated her again.

The next day we were advised she was on 65% oxygen and was being given Tazocin a broad spectrum antibiotic for suspected lung infection.

Today the nurse said she's on 55% which we thought was good but the nurse said don't get so hung up on these figures as they can go up and down.

Shes being proned every 12 hrs.

We are all going out of our minds too scared to call the hospital for updates and scared to get a call from the hospital which has only happened when she initially deteriorated.

Not being able to go see her is such a nightmare, feeling sick with worry, stomach in knots.

Me and my sister and brother are all camping out in my sisters front room trying to stay positive for each other but its not easy. ​

[Sepsur]

Hi Susie

The fear is on many levels with critical care & knowing how & what to ask about.

Here are some hints

What should I ask the doctor?

When you speak with the doctor, it is often difficult to remember all your questions . Therefore, writing down questions and concerns as they arise can be helpful .

• What is wrong with my loved one? (What is his or her primary diagnosis?)

• Are there other medical issues that are important right now?

• What is the treatment plan?

• When do you expect to see a response to treatment?

• What changes will you be watching for as a response to the therapy?

• What are the risks of the therapy and/or medications?

• How do you expect things to go in the next 24 hours?

• What is the best possible outcome? Worst possible outcome?

• How will this condition affect my family member’s long-term quality of

life?

• What types of medications is he or she receiving?

• Is the patient in any pain?

• What is being done to ease pain and fear?

• How is nutrition provided?

• How long do you think my family member will need to be in the ICU

[djsioux in reply to Sepsur]

Thanks you this is really helpful to know what to ask as we feel so much in the dark as to what's going on and we have been told some conflicting information over this past week! We've been in panic mode and not sure what to ask and finding it difficult to understand what's going on with her care plan and too scared to ask for a prognosis. The doctors are so doom and gloom but the nurses are more upbeat and reassuring.

Are you the administrator of the Facebook critical care support group?

[LeopardGecko in reply to djsioux]

I also found this with most of the doctors and nurses. I think doctors tend to look at the overall picture and can therefore be quite gloomy whereas the nurses are with them 1:1 and can tell you about the small positives that they have noticed.

As you go along, you will start to naturally have questions and these questions will change as their treatment changes. I always wrote down my questions before I called so that I would remember them all and always made notes of what the said as it quite often felt a lot to take in.

Keep looking after yourselves and hopefully we can provide some support and answers on Tuesday xx

Sarah (FB group)

[djsioux in reply to LeopardGecko]

Yes the doctors are so gloomy, they don't give you any hope! Our brother is not coping well and its hard to ask questions when we are on loud speaker, im wondering if I can send them a list of questions they can reply to so he doesn't have to hear too much as all he keeps saying is he can't cope hearing stuff. It's also quite difficult to take everyrhing in on a phone call as we are all wound up before we pluck up the courage to call, and my writing is awful at the best of times so when I try to read what I've written while on the phone most of it is illegible!!! we are just gearing ourselves up now, our anxiety levels are through the roof! Xxx

[Sepsur in reply to djsioux]

Yes 😊

[Covidkid]

Oh I’m so sorry to read your post! Covid is the scariest, nastiest and the most unpredictable bitch you’ll ever meet but, your mum is in safe hands and since I had covid last December and was on cpap and in icu, their knowledge has so improved! My lungs also had clots and I was receiving full oxygen support as my lungs couldn’t breathe on their own, I refused to be ventilated and they finally agreed!! I’m still suffering one year on! The nurses and doctors in icu are highly trained, they know so much more about this horrid virus than they did a year ago and I know your mum is in safe hands although it’s never ever going to stop you worrying! No visits is harsh (I know)! Can you send her some dvds of her fave songs or even messages from you? My family and friends did that for me and it kept me going! I’m crossing everything for your mum and hoping she’ll be home soon xx

[djsioux in reply to Covidkid]

How did they support your breathing if you refused to be ventilated, are there other ways they can support breathing? It's a week today since she was ventilated, it's so scary for us but it must be so scary for her, the nurse told us when they told her she was going to ve ventilated she put up her 2 thumbs, its heartbreaking, she must have been terrified!

Sending music she likes is a fantastic idea, she does like listening to music and we can send in her favorite CDs, we want to ask if they can hold the phone to her ear so we can tell her we love her ❤ and we are thinking of doing a recording from all the family but not sure how to do this yet. Xxx

[Covidkid in reply to djsioux]

My icu nurses would FaceTime loved ones for us as we were in lockdown and were happy to do this! I was on oxygen all day and then the cpap every night! They tried several masks on me before they found the right one that I was comfortable with! My friends bought in magazines for me which they dropped off at reception and they got bagged up and bought up along with a DVD player and cds! But ask them to FaceTime you so your lovely mum can see you and vice Versa! I was given 50/50 on my admittance so I was very ill but they did listen to me hence not being ventilated!! Good luck keep us posted x

[djsioux in reply to Covidkid]

Did you have to have a tracheostomy?

[Covidkid in reply to djsioux]

No I didn’t thankfully x

[Hidden]

All you describe happened to me when I contracted covid. Initially it did not seem too bad but I deteriated and was transfered to ICU. I was on a ventilator and then had a trachy. I was sedated for about 4 weeks and in ICU for a total of 10 weeks. I was then transfered to a community hospital for physio for 4 weeks. I was given the Dexa drug as a trial so glad it is now being given to your Mum. I was proned a number of times. I had anti clotting drugs and these were taken for a further 3 months during my recovery.I was really ill , but am living hope that your Mum will have the same recovery. Its been over a year now but still suffer fatigue, and am now having long covid consultations.

I hope all turns out well for you.

[djsioux in reply to Hidden]

We thought my mum was getting over it but then she took a turn for the worst over a week after first symptoms.... but the doctor came out to her and prescribed an inhaler! We had the paramedics out to her a couple of days later her blood sats were 88% but he didn't say she needed to go to hospital just to keep an eye on her oxygen sats and call 999 if she got worse, the next day she had dropped to low 70s

I've read the doctor could have given her an anti viral pill that has recently been approved, we feel so let down by the doctor and the paramedic as they didn't show any signs of being overly concerned and 4 days later she was admitted to hospital, we are rattled with guilt wishing we had known how seriously ill she was and we should have insisted she go to hospital sooner!

It sounds like from all the stories I've read its a long road to recovery, I hope you and everyone who has gone though this make good recoveries.

I've read good things about dextramethadrone so hoping and praying this saves her, they have other monocolonial anti body treatments now for people who havent mounted an anti body response, the treatments they have now are much more advanced than they were at the start of all this

[Hidden in reply to djsioux]

I am sorry that at the start your Mum's care seemed abit lacking urgency. From that point of view I was lucky as was already in hospital recovering from an infection and sepsis, and contracted covid after being transfered from ICU to a general ward...So I was already in the right place.

Yes I understand treatments are being developed all the time, but last year it was still early days, but the care I received was great .

[paris2021]

Hi. I just wanted to reach out. My brother was admitted to icu 2/11/2021 intubated and ventilated. Like your mum his oxygen was going up and down - at one point he was on 100. Two weeks again we were called in as he was critical and we thought we were loosing him - somehow he has pulled through and has had his sedation reduced. We are still waiting for this trachy that’s taking ages but that’s another story. In the last few days he has opened his eyes and been able to respond to simple commands. It is an absolutely terrifying time but this forum is amazing and it has given me strength and it helps to know we are not alone. Sending you and your mum lots of love x x

[djsioux in reply to paris2021]

Hi, it's such a terrifying situation, so glad to hear your brother is on the mend, it's early days for us, shes been on a ventilator a week today.Can I ask why they did the tracheotomy as I've read so many patients in ICU seem to progress to having this procedure?

We are just working up the courage to call the hospital, it's the same every day, the feeling of dread and anxiety levels through the roof.

Me and my brother and sister are camping out in my sisters front room, we can't leave each other were so afraid.

This site has been such a comfort knowing were not alone in this.

Thank-you for your comforting message xxxx

[Copse77]

Here is some information for patients and relatives that might help you and your family. It’s the link to the Intensive Care Society. ics.ac.uk/Society/COVID-19/...

Keeping a daily timeline might be helpful for you and your family so on difficult days you can remember the positive progress made. My brother was put on a filter for his kidneys when he was in ICU. We were advised The kidneys are the last organ to recover. I hope your Mum makes a good recovery

[paris2021]

For us too really. They use the terminology “out of the woods” a lot. Mainly to tell us that he isn’t “out of the woods” so I understand the worry. See his partner is next of kin so the hopsital will only speak with her. However I can totally relate to the anxiety of waiting for news there was a part of me scared to pick up the phone when I knew there would be an update you just get that sick feeling of dread. It’s very scary. So my brother has not had his trachy yet. He was meant to have it two weeks ago but he contracted sepsis and pnueumonia then deteriorated very rapidly and frightening - they then put him on blood thinners which made a big difference and helped him recover. From last Wednesday they told us he would be having the trachy - he still hasn’t. Every day they say he’s on the list while telling us because he has to have it in theatre he has to go in last because he’s coming from the covid ward. So it’s frustrating as every day we are waiting and hoping because apparently it’s meant to help with his recovery but it’s still not been done and we don’t understand why. We were told they do it as it’s more comfortable than the tube in the throat and can help with recovery although I am sure there are people a lot more knowledgeable on here about trachys than me. Please keep us updated on how your mum is doing. I know it’s awful but try to keep positive if you can - there’s some amazing stories on here about what people have overcome ♥️It’s certainly a rollercoaster of intensity. X xx

[lynnmarr]

HiMy husband was in the exact position in 11/1/2020. A covid specialist used blood thinners and anti anxiety drugs and my husband's lungs cleared from blood thinners. Once given the anti anxiety meds they were able to get him off high sedation. This is a risky procedure, but you have no other options? Do not let them prone when on blood thinners it caused a heart attack.

As soon as possible get her trached. After high meds it took my husband 31 days to regain consciousness. They told me he would never wake up, was brain dead, and never get off trach and ventilator?

With a lot of praying God healed him and he is perfectly fine cognitively, not on ventilator or trach, is beginning to walk again after severe muscle athropy.

Start praying and ask the hospital to use blood thinners. My husband was on trach and ventilator for 10 months.

Good luck!

[djsioux in reply to lynnmarr]

Why do they switch to tracheostomy, is it better for breathing?

They have been proning her since she's been ICU on anticoagulants and it has helped her with her oxygen requirements, I hadn't heard that its not good to prone on blood thinners, from what most people say its standard procedure to help lessen the stress on vital organs and help with oxygen flow, this is very worrying! I'm not sure if they are still doing it now they are reducing her sedation, they said its been reduced a lot today. She went into ICU 1 week ago today

[lynnmarr in reply to djsioux]

The most important thing is to get her lungs cleared of blood clots first. Then a trach allows them to be awakened and get better with breathing. Blood clots will continue to fill the lungs and cause her to drown.

[djsioux in reply to lynnmarr]

I thought the anticoagulants were given to stop more clots forming, most people I've spoken to on here that had similar experience has been proned, I have not heard it is risky and nobody in the hospital.has mentioned her having a tracheostomy but I guess its early days

[djsioux in reply to lynnmarr]

Thats sounds scary, I really thought the anticoagulants stopped new blood clots from forming, they said she had 2 on her lungs and 1 in her heart chamber which they were treating with high dose warfarin and not sure if they are using something else

She has been on dextramethadrone steroid for the inflammation since being admitted and she had sarilamab to calm her immune response, cytokine storm

[lynnmarr in reply to djsioux]

That didn't work for my husband to clear out his lungs? Hopefully it does? If not you know what to do if you see no improvement?