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Original poster

The hospital just called...

185 replies

greenwayer · 25/03/2022 03:06

My mom is 69 and has been in hospital for 10 weeks, she went in with slurred speech and a slight infection and confusion. In that time they have not found what is causing her symptoms, she's had every test going several times. About 2 weeks into her stay hospital called me at 1.30am to say she had deteriorated and they were considering DNR. Luckily she pulled through but hasn't really got much better. She now regular has times where she's more conscious or less conscious. 10 weeks in bed has took its toll. The hospital decided to send her to rehab at another hospital, I was surprised because of her condition but have to trust their judgment. Apparently she went there yesterday afternoon.

The hospital just called to tell me she's back in hospital and completely unresponsive with a GCS of 3. They wanted to let me know where she was. Now I'm wide awake and don't know what to think. I don't have anyone in the real world to speak to at this hour. So I'm talking to you guys.

It's been a nightmare situation because they haven't allowed visitors because of Covid, I live 200miles away and when I call it's difficult to get information, I'm lucky if they actually answer the phone and it took 9 weeks to even track down her neurologist. She told me a couple of days ago that she was fit for discharge. Fit for rehab. They could find no cause for her symptoms. She has 'sleepy' times and 'chatty' times. That is all I know.

I don't know if she is actually worse now or just in a 'sleepy' time and the staff aren't used to her or if this is further deterioration and I should be seriously worried. The lack of information is crazy.

OP posts:
RonaldMcDonald · 25/03/2022 03:14

I’m really sorry you are dealing with this alone
I know that a GCS of 3 isn’t great and I’m sorry to say this to,you if you didn’t know that.
We lost my MIL similarly from what seemed like admitting for dehydration, to well enough for discharge, to failed discharge, to very swift deterioration that made zero sense.
If you can - go to see her asap and I wish you and your mum all the very best x

ZealAndArdour · 25/03/2022 03:19

As gently as I can put it, GCS 3 isn’t just sleepy. Can you ring the hospital and ask if you’re allowed to go and see her? Or get an update?

Has she been sent back in from a community hospital part of the same trust or a totally external provider? If this has all happened tonight it’s likely that she’s still in A&E, so that might give you a starting point to make a phone call.

ZealAndArdour · 25/03/2022 03:20

Sorry, just seen that you’ve already spoken to the hospital.

Interested in this thread?

Then you might like threads about this subject:

General health
user1471439310 · 25/03/2022 03:27

My mom had an undiagnosed UTI which caused massive infection. Was told older patients some don't realize they have an infection and my mom also had sundown where she was confused and didn't know much at night. Can you go and tell them you need to know what is going own.

pooonastick · 25/03/2022 03:33

how far away are you? Can you drive to see her?

Original poster
greenwayer · 25/03/2022 03:51

I'm 200miles away. Through the hospital I did a couple of video calls with her weeks ago now but she was rarely awake enough to participate.

I'm trying not to panic about it because like I said we've been in this situation before about 7 weeks ago. But maybe things actually are worse now. The nurse was just letting me know that mom was back in hospital and was unresponsive, I had to push for the GCS score. I told her how she had been like this before and how she has been over the last 10 weeks. It's a frustrating situation and has been the whole time.

I've read that GCS 3 isn't great but she's come out of it before. There's no medical reason for her to be like this. She's had many MRI, CT, EEG scans over the last 10 weeks. An MRI last Tuesday. A lumber puncture and endless blood tests. She does have epilepsy and they increased her medication because she started having fits again recently but she was settled in that way. They diagnosed encephalitis weeks ago then told me this week it wasn't that after all. They found scarring on the front of her brain, every possibility considered but they think that was from a undetected stroke which could of happened years ago but not recently. I do feel they just don't know what to do with her, the physios saw a possibility of rehab because she showed willingness to want to sit up. That must of been during her more alert moments.

OP posts:
Justilou1 · 25/03/2022 03:57

I would go in the morning if I could…. She might hang in there like this, but would you forgive yourself if she slipped away quickly? GCS of 3 shows significant deterioration. She was referred to rehab because acute beds and resources are always required and at the moment, she is not an acute patient. In a rehab facility, if DH were to recover further, she would have access to allied health professionals like physios, O.T’s, Speech Pathologists, etc…

Original poster
greenwayer · 25/03/2022 04:02

I honestly didn't think rehab was an option for her but where should she be?

OP posts:
Original poster
greenwayer · 25/03/2022 04:12

Can you have a GCS of 3 with no reason?!

Could they be wrong?

OP posts:
Dovetail6 · 25/03/2022 04:17

Gosh OP so sorry to hear this. We had a similar situation with FIL a few weeks ago in that we live 200 miles away and he was taken in during the night. I have to say we just got in the car and started driving with an overnight bag. Are you sure the hospital won’t let you see her? My husband was able to see FIL as he was in a critical condition and luckily we saw him before he passed away. I would honestly pack some things and drive if you can.

RonaldMcDonald · 25/03/2022 04:19

If she is now as they say, hospital is the best place for her care.
We wanted to have my MiL home but weren’t allowed to by the hospital.
In our case it was a very significant finding and the flow was swift.

Your case may hopefully be very different - as she has faced this assessment diagnosis before and recovered?
Her having had an MRI during the week does not mean she has not had a recent significant episode.
Honestly, go if you can, as soon as you can

thingymaboob · 25/03/2022 04:20

@greenwayer

Can you have a GCS of 3 with no reason?!

Could they be wrong?

Paramedic here. I'm sorry to say but GCS 3 is the worst level of consciousness you can score, it means eyes not opening, no verbal response and no movement. You can't score less than 3, 3 is lowest score. She is deeply unconscious. It would be wrong of me to speculate why she's GCS3 as there are many causes of unconsciousness.
Loginmystery · 25/03/2022 04:29

So sorry OP. Are you sure they wouldn’t allow visitors? If you wore PPE would they allow you? I was in a similar situation in lockdown and was taken in full PPE with escort to hospital. (My mother miraculously pulled through). Honestly your situation sounds very serious so I would try to visit if I were you. I wish you and your mother the best.

Planetbippop · 25/03/2022 04:30

So sorry to read this. If you're in the UK, you will be allowed to visit in this situation. Sounds like you're only getting info from Nurses. Ask to speak to the ward manager or Matron so you can discuss care, diagnosis etc & also them to arrange a call with the Consultant.

Original poster
greenwayer · 25/03/2022 04:30

Because the situation has been ongoing for 10 weeks now I think I'm a bit desensitised by it all. I'm so used to being told she's sleeping today then a couple of days later that she's chatty. When the hospital called 7 weeks ago when she was gcs3 then they made it sound serious, the call I got earlier was a nurse not a dr just letting me know where mom is and that she's there because she's unconscious. They didn't make it sound like life or death situation and like I said I had to push to get her GCS score. I will give them a call later, I don't want to disturb everyone in the house at this hour.

OP posts:
Wam90 · 25/03/2022 05:06

Sorry to read that you’re going through this and feeling really confused by it all.
As others have said a GCS of 3 is the lowest score.
With regards to not really knowing what’s happened/ been happening and not being able to visit, I would call them back in the morning and request a face to face update with the medical team if you are physically able to get yourself to her. There’s a very high chance that this deterioration could mean something more serious and at the moment it sounds like the information you’ve been given has been a bit hit and miss. I hope you get some answers soon.

SunshineCake1 · 25/03/2022 05:11

So sorry to read this @greenwayer. I hope you get some answers and clarity very soon Flowers.

LollyLol · 25/03/2022 05:15

I'm so sorry OP. I can't comment on your mum's condition medically, but I would say it is worth visiting her if they will let you. It is so hard when you can't be in touch with the hospital easily, it's never easy to do it all by phone. Seeing her will make it more real for you, and help you if the situation worsens. And it is mother's day on Sunday, so it would be nice to see her then and give her a hug, even if you arent totally sure she can hear you.

Wishing you all the very best, look after yourself. It is not an easy thing to go through, these long weeks of hospital uncertainty. Flowers

HarlanPepper · 25/03/2022 05:23

I was in a similar situation with my dad recently. I can hear the confusion in your posts, it's so hard when you can't be there. I agree you should ask to speak to the consultant who is responsible for your mum's medical care - there will be ward rounds in the morning so you could ask for a call after that. And yes, push for a visit if you can. So sorry to hear this.

Karwomannghia · 25/03/2022 05:33

Have you not seen her in person in 10 weeks? You need to go there- you could stay at her house.

Wingingit15 · 25/03/2022 05:42

Op please don’t worry yourself at ringing. Call back and require some answers x

Tilltheend99 · 25/03/2022 05:45

Went my mum collapsed I arrived about five minutes from the end of visiting hours and was told she was stable etc and (obviously her condition wasn’t great but) no one gave the impression that her condition might be life threatening or might quickly deteriorate. We were all told to go home for the night. If I had known then that she was basically dying there is no way I would have gone home and would have stayed with her to try and be of comfort.

We were called back in in the middle of the night because her condition had changed. The doctor came in after rounds in the morning and discussed her condition and said (I have no idea to be honest it was all a blur) something about checking for swelling of brain stem. When he left at least two of us had been given the impression that there was still some kind of hope. After an excruciating wait she was declared brain dead and switched off.

I’m only telling you this because sometimes unfortunately communication can be very poor or confusing (this was pre-Covid so it is probably even more confusing for you) and I really think to be on the safe side you need to try and get up there and see someone in person.

Op I really hope your mother recovers but if the worst happens I hope you are able to spend time with her at the end and get answers about what has caused this Flowers

bookish83 · 25/03/2022 05:48

Hi OP I am so sorry to hear this

I am also concerned about the GCS. If she was 3 they would be getting you to visit asap if there was such a deterioration. Hospitals have rules that are different for quite unwell people. GCS 3 is not given to people who are going to rehab. Have they said she is in a coma? Without knowing full medical details it sounds like something acute has changed rather than 'sleepy'. GCS 3 is not sleepy.

You can lateral flow test and wear PPE. Please ring the ward and ask for the matron to discuss this. If they will not, ring PALS asap and explain the situation. Covid is not so bad now that you cannot visit.

Fuuuuuckit · 25/03/2022 05:56

I had the call op, and I was minutes too late getting to the hospital.

Call them back, demand answers, get in the car and go, lft when you arrive, wear masks.

Don't be too late.

BritInUS1 · 25/03/2022 05:57

Has she been treated for a UTI? My Nan had similar and had a UTI that had caused a lot of problems