ICU 3 weeks

[Ohgollyitsmolly]

Hello there,

I’m so glad to have found this website, I think it’s just what I need right now.

Three weeks ago my Mum was at my house when she had a moment of confusion. She was talking, but not making sense and seemed to struggle to get her words together. What made me concerned was that it didn’t feel like she could hear me. Very long story short, but we went to A&E during the doctors strikes in September. My Mum ended up having tonic clonic seizures and the only way they could stop them was by putting her under anaesthetic and on a ventilator.

She was then transferred to another hospital within the same trust as the initial one didn’t have space in critical care (ICU). Initially her blood pressure was very high, and over the first weekend they were just stabilising her. Once the strikes had ended neurology and cardiology decided that maybe the spikes in BP were in fact still seizures. So they doubled the dose of epilepsy meds and reduced BP meds. That seemed to help. But then she got a lung infection, they suspected aspiration pneumonia, but later it was just regular pneumonia.

Her infection markers kept on rising and she was really quite poorly, with the threat of sepsis. The consultants goal was to get her oxygen levels stable enough for a tracheostomy. Finally the cultures came back from the lab and they were able to start her on a more specific antibiotic. She’s allergic to penicillin so it made it slightly trickier to find the right one.

Just as she seemed to turn a corner (with the goal of a few stable days for the trache), we were told she was being moved back to the closer hospital as they were at capacity. We were not happy with the move, and initially she took a bit of a turn after the move.

Her oxygen requirements had increased so we were worried about what was going on. The new hospital took her off 4 meds and reduced the sedation. Then over the course of 24 hours she rapidly improved. Her oxygen requirements went from 90% to 35%, and they have turned the sedation off completely. They are not waiting for her to reach an appropriate level of consciousness before extubating. This morning I called and the nurse said her ventilator is on the minimal setting. Her BP was a bit rocky over night though - but she’s incredibly anxious and has severe white coat syndrome. So I’m wondering as she was becoming more aware was anxiety kicking in. I have mentioned this to them.

So that’s my story, well my Mum’s!

The doctors have all been wonderful, but obviously can’t tell me what she will be like when she’s fully awake. Has anyone got any experience of a similar situation?

Also, is there anyone who can offer more practical support? As I don’t have power of attorney, absolutely nobody will talk to me about her accounts/bills. I’m just concerned about the state of her affairs if nobody is keeping an eye on them.

Likewise, is there any monetary support? She’s 57, she’s on universal credit and has been job searching for about 3 years following self employment. I’m ashamed to say that she must have been quite poorly before the seizures as her house is a bit of a state. But the amount she receives from universal credit is only about £300 a month.

Any advice would be very gratefully received. Thanks for reading.

[Sepsur]

Disability living allowance has been superseded by PIP & ESA. I’m afraid they are both an ordeal to claim.

We run a relatives drop-in every Tues at 20.00 U.K. time on zoom - you will definitely get appropriate advice there.

cc-sn.org

[FamilyHistorian]

Hi

I’m not a medical person but it sounds to me that her sever white coat syndrome as you put it means that she is hallucinating something many of us go through whilst in a coma.

If you not getting the support you need from the medical staff you can as PALs to help and they work within the hospital.

My wife had terrible problems trying to pay bills whilst I was in all she got was data protection and all she wanted to do was pay bills.

As sepsur said the relatives group will help a lot for my wife she only found out about them after I came out

[BigH63]

Hi.

Sorry to hear about your mother. It’s hard on all that are close to her including her. As to your questions I can just tell you with relation to her affairs you will more than likely have to go to court to get help on that front. My partner and I fell ill back in January and I was in ICU for over 4 weeks and my partner in a normal ward for 10 days. We did not have LPS’s in place but have now just in case it happens again.

As for money she should get PIP both mobility and daily care . Look at this. gov.uk/pip and maybe

gov.uk/employment-support-a...

And you might get carers allowance but you will have to check there might be others ask Citizens Advice they know this inside out.

Hope this helps good luck

Regards

BigH63

[TK11LEO]

Sorry to hear about the situation you’re all going through. I’m currently going through the PiP application process and have my face-to-face interview on Wednesday. I stumbled upon this website

benefitsandwork.co.uk

I wish I’d have found it before I completed my application as it gives you all the information to enable you to answer the questions correctly, with the wording required. You do have to pay £20 to become a member but I’m unsure how much information you can see without becoming a member as I joined up straight away. It might be worth going through everything on the page before signing up. Your PiP application can’t be back dated but , if you’re successful, the claim will be from the day you apply. I hope this helps and good luck with everything.