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dd in hospital need help. re treatment possible complaint. what to do - help us please!

241 replies

hospitalworry · 14/04/2015 20:56

i will try and give everything i can here - so it will be long
dd home from uni last week. fine happy etc. planning to go back friday. its not far (1- hour public transport) so just assumed she'd gone back when i got home from work friday as she has a p/t job in a club and i know she was working friday. anyway. sunday rolls round and i think -i will go in her room and see what a tip it may be. (door had been shut). see her on the bed. obviously not okay. she is diabetic and i thought it was something called DKA which is serious and needs taking to hospital which i did. she showed signs that it may have been dka - which were - severe confusion/incoherence, urine on the floor - obviously wet herself, couldnt find her blood testing kit so erred on the side of caution and took her in.

when at a and e , they admitted her. she was BORDERLINE dka - for those who are in the know blood ph was 7.35 and bm 19. however most concerning for ME was her inability to communicate.

anyway - ends up on hdu (high dependency unit) on sliding scale (insulin stuff etc to sort diabetes stuff out) and drip and catheterised - what i would expect.

monday morning i go in prior to work early.
miles miles brighter and apparently her bm is now down to 13. although this is where it is very very apparent she CANT talk - literally. and although seems to understand me (to an extent) difficulty responding . i tell staff this and get told she is probably in pain and doesnt want to talk (although with a 1 staff to 2 patients ratio on this ward i really shouldnt have had to tell them and this sounds like BS)
husband sees her lunchtime - he sees how bad she is too and he raises it with staff - they say - has she got psychological problems, and maybe she is an elective mute! NO
that evening I go in and see her and she is million times brighter but she still cant talk - again raise it with staff - told she is quiet and doesnt want to - i say no actually i think there is something wrong. when given her meal - she can use her fork in her left hand but no fine motor skills in right - told they hadnt noticed (forgetting - i asked at breakfast - had they considered that she might have had a stroke - was told they she had been assessed and nothing facial to indicate a stroke and reflexes fine, and if it was a tia then it wouldnt show on a ct scan so no point. she had a small fit that i called the nurse and she saw the end of it.

told that the neuro centre staff from a local unit visit our hospital on a tuesday and she MAY be referred depending on what the consultant thought.

today(no change in her)
met with consultant who (along with the other input we had had) gave the impression that it was her wanting to not speak.
he said that if it was neurological and she was unable to speak she would be more distressed . (she smiles and nods a lot) He actually said she might be putting it on or choosing not to speak . I said - what about the fit- he said that people COULD fake a fit. he said that obviously they would go with the advice of the neuro - but the protcol is if they thought it might be organic they may order ct, mri or lumbar puncture, if they didnt deem it neccessary after an examination she would be referred to psychology.
the inference being - this is what he thought it was.

she did get seen by the neuro - who ordered an immediate ct scan (at 7pm) not waiting till morning. it showed unexplained abnormalities, she is due for a mri in morning . and has been put on klexane which apparently prevents clots

my question is am i being unreasonable to think a 20 year old presenting like this - and with parents pushing - should have been noticed there was a problem, beliieved when we said - its not normal and we think theres a problem, and to want to complain - especially if it causes anything that causes her long term problems.

why wouldnt the klexane be prescribed before neuro saw her, why didnt they believe me, why did they intimate she is faking it.

advice please

OP posts:
hospitalworry · 08/06/2015 14:47

It's been good.
Just a pain regarding not knowing a lot of stuff.

OP posts:
KeepOnTryingTilYouRunOutOfCake · 08/06/2015 15:01

Been lurking but glad to hear u are getting answers

hospitalworry · 08/06/2015 16:08

Thanks
It's stressful
We still don't really know what she's got specifically and the probable prognosis.

OP posts:
mumslife · 08/06/2015 22:20

This reply has been deleted

Message withdrawn at poster's request.

hospitalworry · 08/06/2015 22:45

Thanks
Im feeling teary atm
It's stressful with me and dh
He's gone off work with stress and sees her loads in daytime
I go to work at 7.30 and go to hospital from work,getting home 8.30 -9.00
He gets full pay
If I went off I get nothing
I'm knackered
I am like a mushroom
I have asked for a meeting with consultant
Fucking fucked off

OP posts:
mumslife · 09/06/2015 12:38

This reply has been deleted

Message withdrawn at poster's request.

Butteredparsnips · 09/06/2015 22:14

Flowers Sounds like yesterday was tough. Do you have anyone (other than DH) who is there for you in RL? You sound exhausted. Sending an un mumsnetty hug x

Butteredparsnips · 10/06/2015 21:45

How are you doing today?

hospitalworry · 10/06/2015 23:11

Well there IS news
Consultant on holiday for 2 weeks from today after that a case conference
Tomorrow she moves to rehab unit
They want to observe etc for a few days so not off ward.
Dad doesn't want rehab.
Wants home.
I want rehab.
Need answers re mri - what has it shown and can I see it? (dad won't ask and doesn't want to see it )
Pet scan - coz no operation mentioned presume no tumour present (dad didn't ask)
More words today but not fabulous on the whole

OP posts:
mumslife · 11/06/2015 19:27

This reply has been deleted

Message withdrawn at poster's request.

hhhhhhh · 11/06/2015 19:44

This reply has been deleted

Message withdrawn at poster's request.

hospitalworry · 11/06/2015 20:37

She's gone in
Everyone else seems to be the opposite to her
Ie physically affected and older
Vs young and cognitive
Initially it's assessment.
It's a new facility and appears lovely.
Who knows!

OP posts:
Butteredparsnips · 13/06/2015 08:35

Hope the rehab helps DD, and that she feels able to fit in with her surroundings and take steps forward.
You sounded concerned that she didn't want rehab, how has she found her first few days?

BikketBikketBikket · 15/06/2015 21:33

OP, I've been lurking on your thread since the start, but haven't posted until now as it brought back a lot to me; my DM had encephalitis - came on very suddenly, no idea what it was - just that I was suddenly being told that she had 30mins to live Shock

She survived, made a good - if not complete - recovery, and lived for another five years. Your journey sounds much like the one that I had (years ago now, but it never leaves you). I just wanted to wish you and your DD and DH all the very best - I was an emotional wreck for some time, so treat yourself as gently as you can. Flowers

Getting rehab will really help your DD - even though a lot of the patients are a different age to her - as they do so much one-to-one work with physio, speech etc. It will benefit her greatly in the long term. All my very best wishes...

hospitalworry · 15/06/2015 21:37

Thanks Bikket
She's had one physio a day ( not on weekend) so far
She's Fed up
Dh is champing at the bit

OP posts:
hospitalworry · 17/06/2015 20:48

Some meeting tomorrow ( meet the consultant in rehab)
I'm fed up so much
Feel like I need counselling
Im in tears all the time
Can't cope with dd ( unknown timescales and extent of recovery and what's the actual plan and I'm shitty at all this Whereas dh has worked with learning difficulties adults ( not same but similar skillset) for over 10 years
Also I've got to work and he's on full pay off sick so sees her at his leisure

OP posts:
hospitalworry · 17/06/2015 20:50

I've emailed encephalitis society to see if any support available also my work may have occupational health employees counselling?
We're part of a big group

OP posts:
mumslife · 17/06/2015 21:31

This reply has been deleted

Message withdrawn at poster's request.

hospitalworry · 17/06/2015 22:36

Thanks x
I'm crappy

OP posts:
Delphine31 · 17/06/2015 22:47

I'm so sorry this is proving such a long haul for you OP.

If your employer has an Employee Assistance programme (sounds like it does) all you have to do is call the phone number for that and they will organise counselling for you.

I used my employer's EA programme to access therapy. I couldn't believe how straightforward it was - no forms, didn't have to go through HR department etc.

You have been enduring a horribly stressful few months. It's not surprising you feel so crap. Please do make sure you seek counselling - just being able to off-load and talk to a stranger will be beneficial.

Keep being proactive and persistent with the hospital. Experience has shown that you have to fight a bit to get answers.

Flowers
homeaway · 18/06/2015 14:35

Hospital, you poor thing , please make sure that you get support for yourself. I totally understand the frustration at having to go to work and not being able to spend as much time as you want with dd. Your dd is young and youth will help her get through this. Easy to say but hard to do, but try and take it one day at a time. I am hoping that things get better for all of you very soon.

hospitalworry · 03/07/2015 20:34

Got dd home for the weekend
I'm ashamed to say that I am struggling
She isn't meant to be let out aloneeg to the shop.
She has probably issues with some bits of sight, and she has self harm previously and a bit very minor in hospital. She wants to be alone and realises she is always with someone (not in the house)
She has gaps in understanding but it's mostly there
She has choosing the right words problems
She covers all this well

OP posts:
Musicaltheatremum · 04/07/2015 16:06

Don't be ashamed to say you are struggling. You have been on a roller coaster ride over the last few weeks.
There is help out there. Have you tried the "headway" charity for brain injuries. There should be something in your area or something similar.
Are you working? I know you said you didn't get anything if off sick but your daughter should be entitled to some benefits just now.
Brain injury is a horrible thing to deal with. People will say "she looks well" and all you want to say is " no shit Sherlock, can you see inside her brain?"

She is obviously intelligent and will cover up her deficits quite well and it is not until you live with someone like this that it is apparent how hard it all is.

Do you have friends or family that could help out?

Take care and feel free to moan on here.

highkickindandy · 04/07/2015 16:43

It all sounds very difficult, so sorry.

Have you looked at Headway the brain injury charity? I don't know if it's too soon, as if she's having rehab you probably don't know the long term outlook yet, but it might be worth a look.

Best wishes to you all.

highkickindandy · 04/07/2015 16:44

sorry, just seen the previous poster mentioned Headway too

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