Weaning from vent and sedation after 30 days..

[Duke1998]

My sister who is 43 has been on a vent for 30 days now, she is making progress but every time they try to really wake her up, her heart rate and breathing get very fast and they have it up the sedation again... has anyone else had this experience and is this “normal” with COVID patients?

[FamilyHistorian]

This is not uncommon for ICU patients. Despite the hospital trying to wean me off I didn’t come round until I was ready.

[Duke1998 in reply to FamilyHistorian]

Thank you for replying.. it helps to know that 🥰

[ROMM53]

I think this can be to do with becoming completely dependent on the sedative agents used to facilitate ventilation rather than being a “Covid-issue” per se. Weaning down very incrementally off sedation might be something you could discuss with her medical team?

[Duke1998 in reply to ROMM53]

I spoke to them today and they are slowing down the weaning from sedation after her reaction last night. She also has a temp from an underlying infection which is not helping they think. Thank you the advice x

[Sepsur]

This is normal for anyone who is a critical care patient. There is a tendency to assume all presentations and symptoms are exclusive to Covid, whilst each disease or condition has a few different bells & whistles on it - generally no matter what brought you into ICU - you are probably left with the same legacies - have a look through this guide. Wishing your sister a steady recovery

[Duke1998]

Thank you... and I am sure you are right, the entire icu experience is a new one for us so advice and guidance is appreciated, x

[1212abx]

Yes, this happened to my dad. After several failed attempts at weaning sedation (he was biting the trache tube, blood pressures erratic, pulse and respiratory rates over the place). In the end they tried a different assortment of drugs and different sedatives. Hang on in there. Wishing you all the best

[Mcs1313 in reply to 1212abx]

I was just reading your posts.. did your dad pull through? 🙏🏻♥️

[1212abx in reply to Mcs1313]

Yes thank you. It's been one big rollercoaster. We are at day 113 since he was admitted to hospital and he is still in. He's close to being discharged home to continue recovery thoughThe hospital staff are all amazing and have kept him comfortable and pain free throughout, which is of some comfort, especially when he was at his worst

Hope you and your family are well. I couldn't see any posts from you, so Im not aware of your situation sorry

[1212abx in reply to Mcs1313]

Hi. I have read some of your replies to posts. I am so sorry to read you going through what you are. I wish your mum the very best for her recovery. There were so many ups and downs for us. Even when things were going well, we had set backs. It's so horrible and I wouldn't wish this on anyone. Stay strong, keep praying and willing them on. They know you're there thinking of them

Best wishes

[Mcs1313 in reply to 1212abx]

Thank you so much. So amazing your dad will make it. 90 days and counting for my mom. She was improving but then had to go to an LTACH and went completely backwards. Praying every day for a miracle 💔

[1212abx in reply to Mcs1313]

Keep praying and willing her on for her recovery. Sending her and you our prayers and best wishes. Hang on in there, miracles do happen and everything will work out as they are meant to 🙏

[TB07]

We are experiencing the same thing with my 56 year old dad. He had been on the vent for 25 days and not made it below 60 on oxygen and had a scare one Friday needing to max out the vent settings. Drs have asked us to sign a DNR multiple times and to consider palliative care but we won’t give up on him. Day 25-28 he made astonishing progress and got off of nitric oxide inhaler, down to 30-40 on oxygen, 100 on fentanyl, 10 on versed. When they tried to take him down on the versed he breathes erratically over the vent and his oxygen saturation drops and he has to go back up. Apparently this is the tough thing with covid patients that their lungs are so damaged from the pneumonia that they don’t have much wiggles room when they have to come off the sedation bc their breathing has to stay normal and that’s hard. Good luck to you, praying for total recovery for your loved one.

[Twoblu]

This is hard reading and writing. Some positive news. Some sad news. I dont know where to go or what to do to get help support or guidance

On 6th October 2019, my brother woke up with breathing concerns. He called an ambulance and was taken to A and E Resus. He was put on a small oxygen mask. Then they put him on a full face oxygen mask.

The hospital were aware it made him feel clostraphobic.

He was taken to ICU for monitoring. We said see you in the morning. He was speaking moving everything.

The next morning we went in to see him. Unbeknown to us he had been put into an induced coma. Anyway multi organ failure dialysis. Eventually a trachy was put in. Brought out of the coma. Unable to speak or move.

Physio to a degree. Then moved to a different hospital for weaning then to satelite unit for rehab ? No psych input. Ltd. Physio. Plans made to move him to a care home as covid had hit the uk. They wanted him out of hospital. We couldnt visit they did not have any wheelchairs. He was bedbound there for two months without a wheelchair. He is able to speak although slow and slurred. His hearing has been affected. His physio has been affected. He still cAnnot move from the neck down is totally dependant 24/7 nursing and care home care. The system seems to have let him slip through the net. It is now almost 3years since he was unwell. He has just turned 53 and seems he was abandoned. No physio team to push or guide him. He twitches his fingers.

He can give an almighty shoulder shrug type thing.

The doctors said he has a criticall illness myopathy and criticall illness neuropathy. We were told he would never come home. He would be CHC Funded for life.

Then we were hit with he was never CHC Funded he was moved under covid funding.

We found out what we had been told was incorrect.

So he is in a home. Physio once A week and told we have to pay for any physio.

Awful situation. Has this happened to anyone else ?

[Hidden in reply to Twoblu]

I am sorry to read about your brother's experience and makes me feel very grateful for my own recovery after 4 months in icu 2 years ago. I was transfered to a community hospital for 4 weeks rehab and then a carehome for 4 weeks before returning home. I have some lasting issues such as kidney disease, diabetes type 2, fatigue, breathlessness, and hearing loss in one ear. But feel lucky the rehab physio got me up on my feet so I can look after myself and I am now more recently working with a trainer to improve my fitness.

I do hope that in time there will be some improvement to your brother's outcome.

[Twoblu in reply to Hidden]

Hi. Thank you for your response. What physio and how often did you have it done please. What did they do to help you regain the use of your arms and legs please.I am glad you are having s good recovery. Did you receive encouragement along the way. ? Are you still followed up by a consultant ?

[Hidden in reply to Twoblu]

Hi. I had some physio when still in ICU but really was not up to it..it was more like torture. But when transfered to a community hospital the two physios saw me once a day and slowly slowly I was able to stand up, and then using a zimmer frame walk to the wash room. They also had me walk up some steps and also got me walking short distances using walking sticks. This improvement was over a 4 week period. I was then transfered to a care home and a physio saw me only once per week, and worked on my reactive movement and balance. I then went home after 4 weeks. I was provided a walking trolley and walking sticks. I still use one stick but more for balance. After being home I had some follow up with a spinal surgeon, and ankle surgeon. I spoke with some of the ICU team on the phone as a follow up. I regularly see my gp, and more recently have had some long covid sessions. The most recent improvement has been achieved by seeing a local personal trainer who has put together an exercise program and I see them once a fortnight to assess progress.

All I know is that some patients respond better than others. I was not up to much in ICU as I was incredibly tired and weak. I had been on a ventilator and sedated for 5 weeks with covid, and then a trachy. But once at the community hospital , I felt more relaxed and responded better to the physios and they were supportive. The ICU team were very caring as well, but I just was not ready to always do what the icu physios wanted......getting out of bed and sitting in the chair was for me a nightmare, when all I wanted to do was sleep.

I had been in ICU originally with Sepsis, including kidney failure and very high blood sugar. This was for 4 weeks, and just as I recovered I caught Covid, and was back in ICU from a general ward. So I was very weak.

Two years later I am much better

Hope this helps.

[Twoblu]

Thank you Duke. Somehow something has gone terribly wrong. As my Brother was put in a home out of the area away from where he lived. His doctor automatically changed to one near the home. We never met them or even knew what my btother was being treated for at any one time. He can feel pain as well. Now in another home so hence another new doctor. Same scenario.

So the gps will only know what the care homes have passed on. They do not have all the information and facts.

There does not seem to be any continuity at all regards what happened to him.

I am so frustrated. I read a page of a care file. It said .... was in his room using his eye gaze machine. My Brother does not and never ever had such a machine.

CHC decision initial appeal is ..... does not meet criteria but does require FNC. So i now have to go through more harrowing troubles to appeal again via a tribunial i .

Everything is a nightmare. There is no one Dr in charge of follow ups of anything.

Can you believe. He still does not have a wheelchair he can sit in very long as it hurts him. This is now coming up to 3 years since his admission to ICU.

[CanadianKai]

I was 48 and on the vent for 41 days. Nearly three years later, and I'm getting better and better. Keep talking to your sister and remind her to fight.