ICU agitation and fluctuations in settings. Anyone else going or have gone through this?

[1212abx]

Hi. First time posting and wanted to share my rollercoaster struggles of worrying so far. It's been more comforting reading about so many others going through the same situations and getting the best outcome eventually! I wish everyone the very best in their recoveries

My dad is currently in ICU after suffering with breathing difficulties. He tested positive for Covid-19 and was on the normal ward recieving oxygen. His condition quickly deteriorated over a week and was intubated and transferred to a ventilator in ICU and we were told that his outlook wasn't looking good and we planned for the worst. Thankfully after a few hours, he stabilised and his sats became under control. The oxygen levels were lowered gradually over the course of 2 weeks and they then lowered his sedation slightly which started his own breathing and he was eventually down to CPAP mode on the ventilator with ASB (Assisted Spontaneous Breathing, I believe) where he breathes and the machine gives a little bit of help

They tried a few days after to lower sedation and wake him, but his heart rate became erratic and blood pressure etc and was very agitated and biting on the breathing tube. They quickly sedated him and had to ventilate him again until he settled and they then were able to lower him down a little to allow for the CPAP ASB mode

They think that the tube may be making him uncomfortable and agitated so they have swapped this out after a tracheostomy, which is common after this time so I'm told. We hope that when they next try a sedation hold, that he will tollerate this better and be able to wake

They've opened a new critical care hospital so he has been transported there along with the rest of the ICU patients. They fully sedated him for the transport and had him fully ventilated

Now after 24 hours at the new hospital, he is currently still on the ventilator and they haven't felt happy to lower his setting to allow for spontaneous breathing. Perhaps they need to let him settle and stablise?

He's on a kidney filter machine and antibiotics for sputum infection

It's a bumpy ride and we've had to deal with clots being found (resolved with anti coagulation/blood thinning meds), suspected stroke (which thankfully was not present after scans). We just hope he reacts better when they try to bring him round next time. Could it just need time? We are at day 18 of ICU

[Tootle2929]

I’m sorry to hear this. I don’t have much to help as I’m pretty new to this all too. How old is your dad? Does he have any other illnesses as far as you know? Are you getting information from the hospital?

We’ve found update invaluable- my mum constantly asks questions.

X

[1212abx in reply to Tootle2929]

Hi there. No problem, it's just nice to share information and read about others in similar situations. He is 62. He has hemochromatosis which is too much iron in the blood. He had this under control by having regular blood tests and occasionally visiting hospital outpatient department to have around a pint of blood removed as this is the procedure needed. We get an update call each afternoon and we can phone the ward staff telephone to get an update off them if needed. We tend to wait for the update calls as ventilator settings go up and down throughout the day, so the update call in the afternoon paints the bigger picture

X

[Sepsur in reply to 1212abx]

It’s quite common for people to fluctuate all day long - I always dipped at night - again this is common 😊

[Tootle2929 in reply to 1212abx]

These things seem to take time. Keep strong. I keep reading the good news stories on here to help. Some people have gone through so much and they get through it in time. X

[Sepsur]

Firstly, I would take it as a really positive sign that they moved him from one unit to another. Secondly, a trachy is a move towards waking from sedation. Everyone responses differently to the paralysing agents used to stick us in a coma, as we are on the path to waking up - it can affect people in a variety of ways, so me are still, others can become very agitated, others are a mixture of the two. Everyone has different chrmical tolerances, because of renal issues, depth of coma & level of sedation - all these can effect how quickly someone wakes.

[1212abx in reply to Sepsur]

Thank you. This is encouraging information

[1212abx in reply to Sepsur]

Ok thanks for the infoAfter doing well for the past few days and lowering down on dexdor (dexmedetomidine) and able to communicate with nurses by nodding etc, they have noted he is starting to require more oxygen now, so have fully sedated and are ventilating him for the time being. We are hoping that it is just that his lungs and body are tiring and that they can try weening the sedation again tomorrow or the day after. Not sure if this sometimes happens to others? We are at day 27 of ICU

[Sepsur in reply to 1212abx]

It’s a long haul - my journey wasn’t straightforward and eventually I left ICU after 90 days

[1212abx in reply to Sepsur]

Thank you for the info. I suppose we should keep looking at the trend over the stay in ITU and not the smaller picture

I understand that respiratory muscles would be worked hard as the ventilator is lowered in its support. He was on pressure support but experienced a need for more oxygen. They took the action to fully sedate and fully ventilate. I am told that this rests the muscles and allows them to recover. The noted that during this time, his oxygen levels were able to be reduced from 60 to 50% over several hours, so I think the muscles are repairing

After a CT scan later, they may reduce sedation and hopefully get him back to spontaneously breathing with the pressure assist again

[Videodragons]

Five years ago I was in ICU for about 65 days, ventilated and given a tracheostomy and dialysis like your father. It took me a week just to wake up from the anaesthetic drugs. Hang in there.

[Mccarthy0702]

All you can do is stay strong and positive if possible . I remember all so well them daily updates , dread and fear fill you every call.

My dad had covid back in March , he was 65 . Within first week his kidneys failed and was on and off kidney dialysis for four weeks and during them first four weeks he was not expected to make it . Slowly after a few other problems he was weaned very slowly off the ventilator. It was 73 days he was ventilator dependent for but my dad was so determined and only spend another week in hospital once he left ICU .

He’s been home four months now he’s still very tired but is back driving doesn’t need any aids to get about is doing amazing , although he doesn’t think so .

It’s a long road but hang in there Cos miracles do happen . Sending you lots of healing at this time .

[1212abx in reply to Mccarthy0702]

Thank you for your reply. Staying positive and taking small steps each day. Best wishes to you all

[1212abx]

Update. They tried another sedation hold today and he didn't tolerate it. They reseated back to as he was before the hold, as it seems he's on just the right amount for the moment. They have reduced his ventilator to 30% Oxygen with a PEEP setting of 12 cm/H2O. He is spontaneously breathing with the assistance of the machine. They are going to try a very gradual reduction in the peep setting over the coming days. This is giving him some work and building lung strength. Long road ahead, but we're progressing

[Mccarthy0702]

Small steps in the right direction . I used to get obsessed with oxygen levels and over time I just realised best not to ask as I’d worry myself silly if his oxygen requirements went up.

Hardest part is not being able to visit 😢 x

[1212abx in reply to Mccarthy0702]

Definitely. Small steps are good. Long road ahead. I generally ask once every week or so as I know levels fluctuate through the day and they are just one of many settings beings adjusted

It's such a testing time for us all x

[Ferham]

Hi, I would say lots of things to be encouraged about here . My husband was due to be moved to another hospital when he was in ITU with Covid, he wasn't in the end for other reasons. I was informed only the strongest got to be moved . My husband has so many sedation holds I gave up counting .

His oxygen level is quite low, sounds like he is not far away. I know it's a long journey , ours was 6 weeks, longest of my life . We too have a long journey ahead of us , but we are getting there .

[1212abx in reply to Ferham]

Best wishes in the recovery for your husband. I bet it's finally nice to not have to worry so much every day and night. I'm told that the sedation holds are for the staff to gauge if the patient is ready to come down from the current level of sedation and how they respond. Sounds like they try every so often

It's reassuring to see so many have unfortunately experienced similar and worse situations and have got through it. Especially the man on the news earlier having been in ICU for 222 days and has now come out

[1212abx in reply to Ferham]

Ok thanks for the infoAfter doing well for the past few days and lowering down on dexdor (dexmedetomidine) and able to communicate with nurses by nodding etc, they have noted he is starting to require more oxygen now, so have fully sedated and are ventilating him for the time being. We are hoping that it is just that his lungs and body are tiring and that they can try weening the sedation again tomorrow or the day after. Not sure if this sometimes happens to others? We are at day 27 of ICU

[Ferham in reply to 1212abx]

It really was a complete rollercoaster, some days he would improve and then the next day we would take a step back. ITU is a precarious place , but please take comfort in the fact he is in the best place , We had days towards the end where his oxygen level would shoot back up then it would stabilise.

[1212abx in reply to Ferham]

Thank you for the info. I suppose we should keep looking at the trend over the stay in ITU and not the smaller picture

I understand that respiratory muscles would be worked hard as the ventilator is lowered in its support. He was on pressure support but experienced a need for more oxygen. They took the action to fully sedate and fully ventilate. I am told that this rests the muscles and allows them to recover. The noted that during this time, his oxygen levels were able to be reduced from 60 to 50% over several hours, so I think the muscles are repairing

After a CT scan later, they may reduce sedation and hopefully get him back to spontaneously breathing with the pressure assist again

[1212abx]

He's still not reacting well to sedation holds but he is still at the stage where he is triggering his own breathing and the ventilator gives pressure support for his breath. They are adjusting the sedation mixture he is on and looking to reduce the pressure support (same percent of 30%) peep of 12 down very gradually as he adapts. Hopefully this will help

[1212abx]

They have replaced his painkiller medication with Dexdor (dexmedetomidine) in the sedation mix they are administering. Does anyone have any knowledge on this?

I read that it is used to continue their weaning process in the ICU

[Rhyl1 Partner Moderator ICUsteps in reply to 1212abx]

The important thing about Dexmedetomidine is that it produces sedation and pain control without depressing the patient’s respiratory drive. The lack of respiratory depression makes it a good drug for patients being weaned from mechanical ventilation or even for some nonintubated patients.

[1212abx in reply to Rhyl1]

Thank you for the information. Unfortunately he has developed a stress ulcer in the upper part of the digestive tract just below the stomach. They have injected adrenaline to help this stop bleeding but received blood transfusion. He has been taken off the kidney filter machine now but his levels are borderline to go back on this

Are stress ulcers common?

[Rhyl1 Partner Moderator ICUsteps in reply to 1212abx]

They are not common but can happen to patients in ICU.

[1212abx in reply to Rhyl1]

Ok thanks for the infoAfter doing well for the past few days and lowering down on dexdor (dexmedetomidine) and able to communicate with nurses by nodding etc, they have noted he is starting to require more oxygen now, so have fully sedated and are ventilating him for the time being. We are hoping that it is just that his lungs and body are tiring and that they can try weening the sedation again tomorrow or the day after. Not sure if this sometimes happens to others? We are at day 27 of ICU

[1212abx]

He's now been moved to a different section of the ICU after they tested him and he is now negative for Covid-19. They have ran a CT scan of his head and lungs. He is still back fully ventilated and 50% Oxygen and taking some spontaneous breaths. We hope that they will start to wean the sedation now and get him back to how he was a few days ago. He did make spontaneous breathing 30% Oxygen and 10 peep, but his oxygen levels were needed to be increased. I suspect this is from the muscles taking a lot of work and Oxygen as a result. I am told that muscles used in respiration can take up to half of inspired oxygen to work, so this would make sense. Over a month on ventilator support now. So hard taking each day

[Sepsur in reply to 1212abx]

The difficulty with long term ventilation is the physios are trying to balance getting a patient strong enough to breath on their own as the body busily converts all the protein from the muscle to help fight the trauma of infection - it’s a real balancing act. A person can lose 40% muscle in the first 10 days - this includes the muscles needed to breath.

[1212abx in reply to Sepsur]

That's a lot of balancing work then. They've had to give more ventilator support and up his Dexdor sedation at the moment. They are controling his blood pressure with medication as it is a little unstable. He's at 40% Oxygen though which is better than the 80-100% he was on when first in ICU and he is now negative for Covid. Just hope they can lower his sedation and try weaning him again. So difficult with the ups and downs, but we are thankful he is still battling on.

[1212abx in reply to Sepsur]

They have started him on a different anticoagulant drug which they have said is working. He is still being ventilated and is fully sedated. They are running another bronchoscopy and aim to suction out some sputum etc and test this to give a more targeted antibiotic. They want to get him from being so ventilator dependant and want to start steroid treatment. What does this do? I thought steroids would lessen the body's immune system? They say that they will look to sort any renal issues after they sort the ventilator dependency

[Sepsur in reply to 1212abx]

Steroids will open up the airways to make it easier for him to breathe especially if all is inflamed- everyone in ICU becomes fairly immune compromised- antibiotics & treatment lower your immunity - so of caught between a rock & a hard place

[1212abx in reply to Sepsur]

Thank you. We are hopeful this should all help him move away from the ventilator dependency after the 4 weeks of being on it, and fairly stable for the majority he's been. I suppose it's good they are at the stage of considering this

[1212abx in reply to Sepsur]

If there are a lot of blocks and secretions suctioned out during the bronchoscopy, should he start to breathe a lot easier straight away? I hope that this might help get him get back to lower oxygen pressure support ventilation etc

[1212abx in reply to Sepsur]

I need some advice please. My dad has been on the ventilator for 4 weeks now and they say he's needed 50L per minute supply throughout. This comes after he tested positive for Covid-19. They see not much secretions in the lungs and he's been constantly on 30 to 50% oxygen and 10-12 PEEP. They are saying that as there's been no improvement over the past 2 weeks, they are suggesting the lungs are badly scarred and that he doesn't have much chance to improve. They are starting him on some steroids though. I don't want them to give up hope and want them to keep trying.

He did get to the stage where he had his sedation lowered and was breathing spontaneously back two weeks ago. Now we are back to full ventilation under sedation. There has to be hope. Maybe the scarring is not as bad as they think

[Sepsur in reply to 1212abx]

I had scarring after severe ARDS and the medical staff presumed I would lose a great deal of faculty. A year after ICU, my lungs were fairly normal. Unfortunately a pleural effusion of my left lung through having my leukaemia ‘colonise’ this area, has left me slightly breathless.

Some of us do repair & we can repair incrementally for a long time after discharge.

[ren85]

Hi! I hope your dad is doing well? My dad is on ICU we are on day 12 he doesn’t have Covid but he has a lot of infection in his body his artery is infected and it turned to sepsis he’s on a kidney machine to and ventilator but he just started breathing for himself this week

[1212abx in reply to ren85]

Hi. My dad is doing ok. He's now been on the ventilator for 4 weeks. He's been on and off the kidney filter machine and is now being started on a new anti coagulation medication to help with clots. His brain scan came back ok and lung CT showed no new issues. He's back to spontaneously breathing with ventilator giving pressure support (he triggers each breath and breaths, but the ventilator helps with positive pressure). It's good news that your dad has started to make progress. We've had so many ups and downs, but overall he's made a lot of progress. They monitor so much in ICU and often, it's reassuring that they are being well looked after

[ren85 in reply to 1212abx]

That’s good to hear! I find I don’t often understand the medical terminology and I can’t think of asking questions at the time I write it all down what they say or else I can’t take it in. The nurses said it’s slow steps and you take 2 forward then you have a step backwards. It really is the nurses they are all amazing so caring

[1212abx in reply to ren85]

That's very true. Steps forward and back. He's now back on the ventilator with more sedation and having a lot of lung secretions removed. Hopefully they'll run a bronchoscopy and give his lungs a thorough suctioning out and also take biopsies to target any new or lingering infections. They are also talking of using steroids to help his lungs also. We just need to keep looking at the positive steps they take and reflect on how they were at their worst and how they have improved.