Docs stopping ventilation treatment

[Sammy_786]

Mum is 67 has been in icu 21 days. Had trach done 4 days ago. Is on 35 to 45% oxygen and dialysis machine due to kidney failure. She was diabetic and sufferd high blood pressure. Yeaterday we wer called and said she is responding to her name amd have reduced the sedation from 12ml to 3ml. Today we got a call saying that if my mum doesnt resond to treatment within 24 hours they will take everything off. Can thy even do that.ifeel mum needs more time and can recover. Thy have said 2 ppl can come in for 15min to see her. Really need some advice or positivity.

[mso94]

Kidney failure can cause people to wake up later because it slows down the rate at which the sedatives are dispelled from the body. Praying for your mom, things seem to be heading in the right direction for her so I agree she deserves a fight. They wanted to end treatments for my dad (31 days on vent due to covid) but we told them no. And he survived

[Sammy_786 in reply to mso94]

How did you stop them? As the hosp wont listen to us.

[Mccarthy0702]

21 days isn’t time enough to be talk of giving up . My dad was on the ventilator 73 days with covid back in March . He came across many problems along the way and I think the kidneys failing slows recovery process down , hang in there and keep fighting for your mum There is hope my dad been home five months now and has made a good recovery, still uncertain if he will ever be the same but he’s is here .

I’ll keep your mum in my prayers xx

[Dbilingual79 in reply to Mccarthy0702]

What issues has your dad had since coming home? Im in same boat with my dad. Curious as to your dads long term problems... 🙏 thank you

[Mccarthy0702 in reply to Dbilingual79]

He’s still has a lot of fatigue, has a sleep most afternoons. Suffering with pain in his arms and legs , possibly nerve damage . Not had the best aftercare really , his chest X-ray in Oct showed a lot of improvement in his lungs he goes back in two weeks for another . Still a little brain fog but he’s back driving and getting on with things best he can . He can’t really walk long distance still pretty breathless but doesn’t require and extra support or aids anymore . I gather it’s a long road to full recovery after such a long time in ICU X

[Dbilingual79 in reply to Mccarthy0702]

At least he can drive. My father lost almost all use of his hands which we still dont fully understand the reason behind this. His legs came back 100%. It is so frustrating and depressing to see this. I would do anything to be able to fix him

[Sammy_786 in reply to Dbilingual79]

Sorry to hear that. Im a form believer in prayer. I will pray for your father to restore his health completly

[Mccarthy0702 in reply to Dbilingual79]

I don’t think long term covid patients will ever be truly the same as before , us relatives either . Got to be thankful we still have them although there is days when my dad has felt like his improvement isn’t fast enough he’s come a long way x

[Sammy_786 in reply to Mccarthy0702]

Covid does leave behind a damaging trail for the whole body. I hope your dad makes a full recovery. Its sad but i can believe he would not have recieved the best aftercare as the hopitals are overworked and dont have the time or resources. We pay tax all our lives and dont get the care wen we need. Inside info tells my mum could recover if they gave her time but they just want to free the beds for other patients. We live in a country where we pay so much tax and yet i feel if i went to a third world country and paid all that money we would get the best treatment. Government spent so much money on nightingale but dont have enough staff and not using the facilities. What was the point.

[Mccarthy0702 in reply to Sammy_786]

I feel sad that this is the case for you , my dad received amazing care .in ICU . Even during times I had calls to say he may not make it as he was one of the stickiest patients they never gave up on him. One doctor said he was running out of options as his body was so swollen and they were struggling to find a vein to treat his kidneys , I begged them to keep going and the doctor said as long as he continues to fight we will keep going . He had a lot of ups and downs which is expected for long term ICU patients , almost one step forward one back . It’s truly heartbreaking not being there to voice your opinions just phone calls .

Maybe if you get to visit that will spur your mum on I know after 8 weeks after a visit my dad really began to improve .

Really hope there is a better outcome for you your mum deserves some more time xx

[Sammy_786 in reply to Mccarthy0702]

Thank you for your kind words it gives me somewhat some comfort. They are strictly not allowing vistors. Only one visit just before a patient is about to pass for 15 mins and 2 family members

[Cazthomp]

Tell them that you don’t want them to do that that you want them to continue to treat her this takes a long time my mum has been on ICU for 35 days and has just started to come round she is still on the Trachy ventilator but they are starting to wean her of slowly and she is a lot more alert and her kidneys have started work again all be it not as they were before but she is not requiring support with these so it’s just a matter of time if she has shown signs of improving x I wish you all the love and hope in the world I really do know what you are going through xxx

[Sammy_786 in reply to Cazthomp]

We are saying we do not want treatment stopped as we know mum can get better. How did u persuade them Because they will not listen and have made their mind up. Now i am begining to question their agenda are they just trying to free up beds? This platform had given me so much hope. Reading all these positive stories gave me so much hope. Hope your mum makes a full recovery. Sending love

[Cazthomp in reply to Sammy_786]

Just tell them you don’t authorise them to withdraw care I think they have to consult you they said they were giving my mum 48 hours but then they just carried on so I think sometimes they give you the worst case scenario to prepare you but I think they only stop if there is no hope at all Covid is a very slow thing to get over so I would keep going you will come out the other side xxx

[Sammy_786 in reply to Cazthomp]

Hey how long did it take for your mum to wean off sedation. Mum has been off sedation since fri and seems to be getting agitated today by kicking her legs about. Hospital rang and said look at the video call what ur mum is doing. You need to let us stop the treatment amd let ypur mum rest in peace. Its bit annoying has mum has been in icu bout 28 days. Its like the hospital are having a go at us for carrying on with the treatment.

[Cazthomp in reply to Sammy_786]

That is awful it’s so common to get agitated when coming off sedation they should know that! This is such a long process my mums doctors and nurses have genuinely been amazing giving her time to do each step x it took her nearly two weeks to come round enough to respond to us it is a very slow process x

[HopefulA]

Hey, your mum is such a fighter!My dad was in ICU for 71 days! Don't let them stop treatment, she just needs time for the sedatives to leave her system.

My dad is now home and getting there but the time in ICU was a rollercoaster but he kept fighting and so we did too..

Sending postive vibes that your mum recovers very soon xxx

[Sammy_786 in reply to HopefulA]

Mum is a fighter never been admitted into hospital before. Its very sad that mums been in hospital nearly 4 weeks and 21 days in ICU that they feel thy should give up especialy when mum has come this far.

[Sepsur]

I can only go off my own experience. I was intubated for approx 57 days and required some form of ventilation for another month although I was awake.

Along the way my family was told to prepare for the worst and on several occasions, it didn’t look like I would make it through the night. No one gave up on me despite how desperately awful it looked. My family fought tooth & nail for my survival - as did I.

[Sammy_786 in reply to Sepsur]

Im glad you are ok. Never really believed covid existed until it hit all my family. I would never wish it upon my worst enemy. It has took so many lives and made so many suffer. We are staying strong. This platform has given me so much hope after reading so manu stories similiar to my mother. We are fighting but how can we tel the hospital to wait little bit longer.

[Copse77]

I would say that you understand she is making progress and that her recovery can take time because her kidneys are not working properly. It may be a mis understanding in communication. Remain hopeful is the best advice we were given in this situation by one kind ICU consultant. We had to fight for our family member too. Take care and stay strong.

[Dbilingual79]

Im in the States so not sure if its same in UK but can they move her to a long term acute care facility as they did for my father? He was in regular hospital for 30 days and although well enough to come off ventilator he was no where near able to come home. The hospital transferred him to an ltac where he coukd stay as long as he needed to slowly recover. he was there 5 weeks and the rehab for another 2 months. please ask... dont give up and you must become the “squeeky wheel”!!

[Tootle2929]

Are you in the uk? I would speak to PALS to get advice xx

[Sammy_786 in reply to Tootle2929]

Yes in the uk

[Ferham]

How is your mum today ?

[Sammy_786 in reply to Ferham]

Thy took ok mums sedation fully yesterday. Mum on 40 to 60% oxygen. They were supposed to do brain scan today but they said they will wait coupl of days. Mums kidneys have not improved. They are given small doses of calming medication thru tubes and small doses of morphine. Praying for the best. Everyday is constant worry and stress. They did say they were going to try to take off the ventilator to see how her breathing is. I feel scared at that point. Im glad i have come across this forum. Whoever started this platform is a god send. The support and comfort i have recieved is beyond words.

[Ferham]

This sounds really positive Sammy, all of us on here know how distressing this time is for you, this is why I support others. So many held my hand when I was in your shoes . Taking her off the vent is scary , but they must feel she is strong enough to see if she can support herself .It's quite common when they reduce the sedation your mum maybe anxious or distressed.

Several people have had kidney issues with Covid and have made a remarkable recovery .

[Sammy_786 in reply to Ferham]

So mum been of sedation since friday. Hospital are ringing every day and are continuosly same the same thing over and over again. Mum is distressed we are putting her through pain. Mum will never make it alive. Mum is sufferin from delirium not responding 6days after being took off sedation which is not normal. Hesitantly reply her heary and brain is fine. So we video called my mum yesterday evening to which we commande to my mum to look left right. Put her legs down and up again. And then one leg up and down. Mum responded to every command. We advised the nurse look mum is responding to us and you say she is inresposive. Nurse replied oh shes just doing that. I am very confused are the hospital trying to make us loose hope or what? Bearing in mind mum does not speak english or talk english which is a big barrier.

[Ferham]

Hi Sammy

Can you not just speak to a consultant or Pals ? I know the hospital your mum is in, it's a multicultural hospital, there must be some staff that work there that can support your mum with the language barrier . Have you asked for it ?

The hospital will never give you false hope , but it sounds like your mum is slowly recovering , you need to ask them in what area is your mum suffering and why don't they think your mum will recover , you need and a defined answer .

[Sammy_786 in reply to Ferham]

Consultant is determined mum wont survive. We dont want to go thru the route of pals as of yet as we have other ppl withing the nhs involved and hospital have been carrying on with our wishes and carrying on treatment which we are thankful for. Doctors are saying mum wont recover because her lungs are totaly damaged which they dont no for sure how much damage exactly. We have said its a slpw recovery which they have agreed on but believe time wont make a difference. Yes you are right that hospital is multicutural. Our next step is to see if they can get someone who speaks her language. Even tho i think its the family voices she needs to hear.

[Ferham in reply to Sammy_786]

Can you not record all your voices for them to play to your mum, or even facetime her. Many of the ITU departments have tablets for this purpose .

[Sammy_786 in reply to Ferham]

Tbh honest they hate it wen we video call. They are so fed up looking after my mum. Ihave said this with a heavy heart. Thy are video calling and say look at your mums legs hanging of the bed. Look how bad she looks. What is their point. She was responding to us on video call last 2 days really good the min we have mentioned this to the doctors god knows what that have injected mum with but she is not responding. For the first time in my life i do not trust the nhs.