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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Fuck it were off to hospital again

15 replies

sparklesandbling · 17/12/2013 15:58

so posted in chat but no one cares.

Feeling like shit, fed up of all the happy families looking forward to Christmas.

DD has been having a bad time with seizures and as soon as she wakes up we are back to the fucking hospital that will be overloaded with other children and about a million visitors making loads of fucking noise which will make dd worse as she has sensory problems.

Life fucking sucks sometimes and at the moment it feels compounded by the fact that everyone is so fucking happy looking forward to christmas with their NT children.

DD missed school play today as she had a massive seizure. I was so sad and disappointed for the seizure and missing the play!

ARGGGG right winge over

OP posts:

ouryve · 17/12/2013 16:06

You're right entitled to a jolly good whinge. That's a bloody crap way to spend the run up to Christmas :(

lougle · 17/12/2013 16:07

Poor you. Can you ask for a quiet room on the ward?

Original poster

sparklesandbling · 17/12/2013 16:11

Thanks ladies still waiting for DD to wake up.

Lougle no they will not give us a quiet room regardless of how many times we have explained the special needs of DD and the fact that she needs to sleep as it helps seizure activity.

We get told sorry more children will come in and they will be more sick than your child or some other shit, in 4 years of going to hospital we have had a private room on 5 occasions!

OP posts:

Lesley25 · 17/12/2013 16:27

Its a tough tine of year witnessing everyone being jolly when life seems to throw you all sorts of different coloured shit.. i get that envy green eye too so many times during the day too.

i wish there was someone you could speak to about a private room in the hospital. if you pm me maybe i can try and help googling and finding out the hospital manager and maybe sending them an email/tel call?

2boysnamedR · 17/12/2013 16:35

That is shit and you have every right to be pissed.

While everyone else was enjoying their kids preform in the school okay I was praying my dyspraxic son was going to fall off the bench they made him climb on off repeatedly. Not the same, but I feel your pain a little bit

TheLeastAccomplishedBennetGirl · 17/12/2013 16:37

is there anyone who can advocate for you, your DD is entitled to care that will enable her recovery

and if that means a quieter room, then a point blank refusal should not be accepted

sorry your DD is back in though, sending get well vibes for her and {{{hugs}}} and honks for you all

Bluebirdonmyshoulder · 17/12/2013 17:04

Who is telling you you can't have a private room?

Insist on speaking to her consultant neurologist - don't take no for an answer.

Sorry that you're having to deal with this and yes, it is particularly shit at this time of year.

TheNinjaGooseIsHooking · 17/12/2013 18:10

how's she doing sparkles, any news?

dd3's best friend missed the play today because of a seizure, it's all a bit shit isn't it

PolterGoose · 17/12/2013 18:42

This reply has been deleted

Message withdrawn at poster's request.

zzzzz · 17/12/2013 21:46

This reply has been deleted

Message withdrawn at poster's request.

5HundredUsernamesLater · 17/12/2013 22:59

Hi, sorry to hear you are having a bad time, my daughter has health problems too and we have missed many an occasion due to being in hospital, so know how you must be feeling (Not that that helps you much, I know) hope she improves and she gets home soon.

hazeyjane · 18/12/2013 09:54

So sorry to hear that dd is in hospital.

Ds also missed his nativity, with a chest infection and serious lack of sleep. I have just been making sure his and my hospital bag is packed and ready to go, if things get worse.

We have struggled with the private room thing too - ds is not great with strangers, and also can be awake making noise all night. But we have never had any success in getting a private room, last year I ended up walking around the wards with him in a buggy for about 4 hours, because it was the only thing that kept him calm.

It all seems so bloody unfair, especially at this time of year. for you.

stillstandingatthebusstop · 18/12/2013 11:08

Hi Sparkles. I was thinking about you on the way back from the bus stop early this morning. How are you getting on? Hope you got some sleep and that you maybe made some progress on the room that it sounds like you really need.

Original poster

sparklesandbling · 19/12/2013 15:41

Hi thanks for all the lovely support, dd is sleeping on settee behind me at home, thank god!

We have been doing a few long days in hospital and were sat on wards. no private room.

Unfortunately I must have that sort of face that says don't help us out?!

Don't know if we will be back in again today as we are not allowed to give her any rescue medicine at home so will be keeping everything crossed.

OP posts:

ouryve · 19/12/2013 15:57

And this is why I hate hospitals, sprakles. It's all so bloody dehumanising, sometimes :(

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