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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 · 04/07/2015 19:45

Thanks x
It's becoming obvious how there are a lot of gaps in understanding actually
Ask her to get a glass she comes back with a bottle of wine. Ask for a spoon and a tin opener comes.
If you ask a question she says ' don't mind ' or what do you want ' etc
(hedging)
Tidying her previous messy room today with her
She wants to get rid of her art stuff because I think she can't operate at the same level as previously and doesn't believe she will.

OP posts:
hospitalworry · 04/07/2015 19:45

(art degree student)

OP posts:
hospitalworry · 04/07/2015 21:05

By the way musical theatre mum you sound like you have experience?
Thanks a lot x means a lot. I feel alone. Even in terms of encephalitis my dds is apparently not typical.
Waiting for results of latest mri on Thursday as they think her condition might be (who knows) degenerative.
Ie more brain dying.

OP posts:
Musicaltheatremum · 04/07/2015 22:06

Hospital, sadly I do. My husband had a brain tumour. Initially a low grade one which he had radiotherapy for which in the longer term caused marked slowing of his brain function. Couldn't multi task (well he was a man :-)) and had marked reduction in thought processes. I had a lot of people telling me he looked "fine" and my MIL and BIL not understanding why I was so upset. He died in 2012. I'm also a doctor so see quite a lot.

Muddymits · 04/07/2015 22:17

Op have been lurking on this and have seen your updates and whilst I have no relevant experience just wanted to send you my very best wishes. Your situation is so difficult and so sad and complicated.
I wish for you some better news soon and some decent counselling/support from others in similar situations.
Try and take care of yourself x

Hassled · 04/07/2015 22:36

I've just read all of this thread. I have no advice - but just so much sympathy. Watching your child go through this must be horrendous - I can't really begin to imagine. But you're there for her, you're coping; you should be very proud of yourself - you say that you're shitty at this but to an impartial observer you're really not, you're doing incredibly well. I wish you all the very best - you have a long hard road ahead of you. I'm so glad you're getting support here.

CoperCabana · 05/07/2015 08:59

I have only just seen this thread and read through it all. Your poor DD and poor you. It sounds awful. When does she go back to the unit?

hospitalworry · 24/07/2015 21:02

She's got more deterioration on mri. We've been offered and accepted the offer of a new super dooper off licence drug ( waiting for local authorities to say if they will pay 16k for it for the year) on rehab unit still and seeing about moving to a better fit place . Apparently she now might be sectioned. (and go to a secure unit which I doubt understand diabetes or brain injury )Some rubbish yesterday regarding her diabetes
To me it showed she knows more than they think
She wasn't wanting dinner and they said she MUST have insulin - she's diabetic.
The regime she's on -long lasting background insulin once a day and if she ate she has insulin to cover the meal (been doing it since she's 15 months)
She doesn't HAVE to eat
No way.
She refused insulin - didn't want dinner. If they injected her she's going to be hypo (low blood sugar)
That shows understanding to me.
They are saying she NEEDS 3 meals a day because she's diabetic (no)
And she's refused meds (reasonably Imo)
Flipping section for this?
I thought it might be because she's expressed suicidal thoughts - apparently not .
And 'shes not depressed ' according to mdt on Tuesday consultant psychiatrist .
Such a joke (in bad taste)

OP posts:
hospitalworry · 24/07/2015 21:06

Waiting to see what happens tonight
DH asked to be told if they intend to section her tonight (if second doctor gets called ) they said 'what , even if it is 3 in the morning? ' er yes. .

OP posts:
hospitalworry · 24/07/2015 21:09

She is down and coping badly
Self harming.
Exacerbated by treatment on ward in our opinion

OP posts:
ApplesinmyPocket · 24/07/2015 21:36

I'm so sorry for you and your poor DD, OP, it sounds like a complete nightmare. I do hope things take a turn for the better soon.

Flowers
midnightvelvetPart2 · 24/07/2015 21:53

Thinking of you op, how dreadful Brew

Doyouthinktheysaurus · 24/07/2015 22:01

I've been lurking on this thread since the beginning, I'm so sorry for what you are all going through hospital it must be devastatingThanks

I hope your dd is able to continue her rehab and doesn't end up sectioned. Your dd obviously has very complex needs currently, I hope you and her professionals are able to find the right placement for her. I would be concerned if she were to be sectioned and end up on an acute psychiatric ward. Her needs sound far too complex for that, although obviously her safety is paramount.

hospitalworry · 24/07/2015 22:03

Thanks guys
It's so hard

OP posts:
hospitalworry · 24/07/2015 22:07

The diabetes is a red herring
It's something that they are latching onto
They aren't treating her as an individual with specific individual needs.
It's a tick box.

OP posts:
homeaway · 24/07/2015 22:19

Op what a hard situation, you know your daughter best . Flowers

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