Mam in ICU 5 weeks still ventilated very up & down

[Babycrazy]

My Mam is in ICU 5 weeks this she got Covid early January. Off sedation but still drowsy. She was getting weaned off ventilator last week and was doing well for few days but now oxygen levels back up and that’s a no go. It’s like one step forward two steps back. The longer she’s in there the more worried we are getting. Has anyone experienced anything similar? Is this up/down normal? Communication very bad from hospital.

[LeopardGecko]

My husband was in ICU for around 2 and a half months and in hospital for a further 3 months. It was constantly one step forwards, two steps back the whole time he was there - it seems to be part and parcel of critical care unfortunately.

I was told at the beginning that it would be a rollercoaster and it certainly was. Try to focus on the positives and look after yourselves.

If you feel you need more clarification try to get in touch with the hospital again to ask them to explain more clearly. I always made notes when I spoke to the staff as this helped me to process the information better once the call had ended.

[Babycrazy in reply to LeopardGecko]

Thanks so much for her reply. I think it’s a case of staying as positive as possible and hoping. As much as they tell you it’s very up and down nothing prepares you for the downs! Thanks for the tip for writing things down.

[Sepsur]

I’m afraid to say that your experience is pretty standard for the recovery from critical illness - rarely straightforward I’m afraid. I hope you get promising news over the next few days.

[Babycrazy in reply to Sepsur]

Me too! Thanks

[DonnaJ26]

My sister was ventilated early January and is still on vent, however the past few days has been weaning well, we were always very up and down, with so many infections along the way, we too have experienced poor communication at times. Call today and speak to the nurse in charge and request 1 doctor update per day, that way you can check in with nurse throughout the day but have an actual doctor update. When you get your first doctor call write everything down and ask what the plan is, once you have a plan it’s easier to ask questions the following day. If the doctor updates don’t come you can then contact Pals which is a liaison for patients and relatives they will ensure the doctors call you each day. Good luck x

[Babycrazy in reply to DonnaJ26]

Thanks so much for the reply & advice. I hope your sister is doing well & the weaning is continuing. We asked for a doctor to call

Us yesterday and today and nothing.

[Letspray]

Our relative is exactly the same ? How is your mum doing today?

[Babycrazy in reply to Letspray]

Not much change to be honest. We had a video call with her and she was quite alert cant talk because of tracheostomy but could defo understand all I was saying. I hope your relative is ok- it’s so hard isn’t it. Rollercoaster

[Letspray]

We had the same experience today. They opened there eyes. It was heart breaking. We demanded a call from the doctor today and I asked a load of questions. Everything is holding up quite well ( their other organs that is ) It’s just the lungs that have been hit by this COVID pneumonia and has a bacterial infection. His oxygen is at 60% pressure 18 and peep at 5 is that similar to your mum’s situation.

[Babycrazy in reply to Letspray]

She is on 50% oxygen I don’t know any of the other figures?! I should really ask those questions. We are going to speak to a doctor tomorrow I’ve asked the nurse manager to ask someone to ring us. The relative support team did call me earlier

I’m glad your family got to have a video call. Any kind of interaction gives us hope!

[Letspray in reply to Babycrazy]

I think you should about the pressure and the peep ( which is also the pressure they blow the oxygen into the lungs ). The reason being you can see when they will will start the weaning process again. Rollacoaster x 10000 is what we’re going through.