sister in induced coma.

[Bendnfn]

my sister developed Sepsis which I believe to have caused swelling on the brain. She has been in an induced coma for 2 days now. So her brain can rest and be protected while the give her as much antibiotics as they can etc. she is unable to have a lumbar puncture to test for meningitis and other brain infection because of the swelling so being given antibiotics for these anyway. She is on a ventilator, dialysis, blood pressure meds, so many wires and machines. It’s breaking my heart. My dad has barely left her side. Slept for 2 hours if that in days. The plan is to bring her out of sleep and see how she goes in another day or so. They said if she is agitated they will just sedate her again and then try again later. What do they mean agitated????

She is stable at the minute. So is best we can wish for now. Please please please let her be ok. ❤️ Broken hearted big sister

[Sepsur]

I think they use that term as a blanket terminology- it is true that your sister may appear agitated too.

If your sister is unable yet to breathe unsupported- I’m sure she would be agitated, the staff would reduce her sedation and slowly turn down the positive pressure on the ventilation ( ie the positive pressure helps to re inflate your lungs). Imagine, it is fairly easy to breathe out - the muscular effort is in the ‘breathing in’.

If your sister isn’t strong enough yet to breath unassisted, it will be reinstated.

There is a phenomenon called ICU delirium which is exacerbated by sedation. She may appear agitated because she is experiencing delirium too. I will attach a link to a set of pdfs that explain exactly what happens.

Obviously, if a patient is agitated, they might start pulling a tubes, drain’s & catheters, probably because they are confused.

cc-sn.org/information

[FamilyHistorian]

I was in a coma for nearly 2 months with pneumonia, sepsis and having had a heart op. I was very agitated and kept trying to pull the tubes out etc. I also had delirium/ hallucinations which is like living in another reality. The medical staff tried reducing the sedation in the early days but I didn’t come round. I also had a trachy. That was 3 years ago. Your dad really needs to take of himself the hospital will take of your sister

[Copse77]

my brother was put in an induced coma when sepsis caused his organs to fail. The advice given by Sepsur and family historian is excellent as I have been in a very similar position to you. The delerium is something that happens in an induced coma and it is distressing for family. Please trust the ICU steps guidance for families as it’s very helpful and written from experience of many others.

[Misterpaulwood]

I was in a induced coma for eight weeks in December 2022, coming out of a induced coma is very disorientating, so meds are given to stop the "agitation".Things will get better, it's always worse for the family... God bless.

[Back_to_reality]

Here's my experience. I was admitted to hospital exactly two years ago today as it happens. I too had swelling on my brain.

During that first week they tried to reduce the dose with the same reasoning; to see if I was agitated. I have spoken to my wife about this, who was there at the time. The doctor was talking to me and getting me to move my legs, fingers and so on, to see if I was responsive and had not suffered brain damage. Apparently I spoke to my wife during this time, but I then started getting agitated, which basically meant I was starting to freak out and rip the tubes out. They restrained me and put me back under.

Now here's my version of the story. I was outside in the street. I had a Georgian building behind me, and there was a hedge in front of me across the street with railings in front of it. Imagine the new town in Edinburgh, or Kensington in London. To my left, just up the street from me, was a stair. People were walking down it and mostly ignoring me, despite the fact I was suspended in the air, on a cable. Or more to the point, the cable was running through me, through my right arm and out of my neck. I was basically trapped in that position.

Then I heard a voice. "I'm a doctor and I'm going to help you". The voice then told me I needed to move my arm and my hand, which I tried my best to do. It all seemed to be helping a bit, although clearly I was terrified about being in the situation I was in.

I then unfortunately became trapped in the window of the building that had been behind me. And no, not in the window opening, in the actual window itself. In the glass pane. At that point I could see my wife next to me, and I tried to reach her, but couldn't.

It all got very freaky after that (if it wasn't already freaky enough). There was a blackness and she was in what seemed to be a portal but I couldn't reach across to her. It got a lot more abstract, and frankly terrifying after that and it makes sense now that they were turning up the juice.

This may be a little too much information here, and you might find it upsetting. The point is, your sister may be seeing you, and she might not. For me, knowing my wife was there was very positive and helped me through the state I was in. You do need to be positive. Tell her she's doing well, that she is hallucinating and she is going to get through this. If she is stable from the underlying issues that put her there, it doesn't mean she's out of the woods mentally. But she will get there. Chances are she'll be fine when she comes round, but it could also take a few attempts. I think it was three attempts for me and even on the third, I managed to rip the cables out and the feeding tube out of my throat.

Stay positive.

[Slip-Digby]

Hi BendNFN

I was in a coma in ICU for a month and I would recommend you try and keep a kind of diary / notebook of the day to day ups and downs - this will help your sis get her equilibrium and fill in gaps in the memory.

These gaps can be very scary for someone in intensive care and a diary can help to make sense of what was real and what may be 'agitation'

As others have mentioned here, oftentimes when coming out from sedation people will pull at lines and tubes. I did, I had to be tied down to the bed or I would have done some real damage!

I hope your sister has a good recovery, try and get dad to take a break - even a small one - it's so difficult for loved ones.

Kindest

Glen

[Bendnfn]

thank you for all your comments. Unfortunately when they tried to reduce the sedation she started having seizures. After an EEG they have said it was status epiliptus she’s on IV medication now and in deep sedation. Hoping to try again today and see how her body handles it. I feel like it’s just constant bad news. One thing then another then another. I honestly don’t know how we are holding it together but we just are.

Best wishes to everyone of you guys.

[downthemoor in reply to Bendnfn]

Definitely keep a diary of everything...there was no diary kept by my ICU which is a key to recovery later on for for sister. After 6 months I've had my medical records sent and has made a huge difference to my mental state . It was scary reading in parts seeing how ill I'd been but somehow it helps when you have no memory of it. ICU will look after your sister now...but this is a really positive thing you can do to help her in the months ahead .

[Slip-Digby in reply to downthemoor]

100% in agreement downthemoor - I was in Intensive Care a decade-and-a-bit ago and though my daughter started a diary, she didn't continue it after 5 days of a 30 day coma/life support.

I would give anything to have those missing days back by way of a written record. I mourn the lost time in ICU - it's difficult to explain the feeling.

One of the most powerfully compassionate things you can do for an ICU patient is to help them fill in the gaps. They will more often than not be in a delirious state due to the hardcore drugs pumped in and the diary 'grounds' that experience in a way that can make the illogical seem just that little more logical.

Take care,

Glen