ICU agitation and fluctuations in settings. Anyon... - ICUsteps

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

1212abx
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

26 Replies
oldestnewest

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
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
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
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

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
1212abx in reply to Sepsur

Thank you. This is encouraging information

1212abx
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
Sepsur in reply to 1212abx

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

1212abx
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

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.

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
1212abx in reply to Mccarthy0702

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

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

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
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

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
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
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
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
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

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

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
Rhyl1Administrator 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
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
Rhyl1Administrator in reply to 1212abx

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

1212abx
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

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