i just want to give up :(

[piglettsmummy]

my daughter has had her fair share of sh*t in the two years shes been here! and it just goes on.

we have struggled to find a treatment to help her, 4 treatments have failed and we have just found out that her 5th might have to! shes on a ventialtor when she sleeps and she started to react really bad throughout the night and after a phone cal with her nurse shes had to go back to her old one, which doesnt do what we need but it helps a bit!

i can understand there decision to switch back at the first sign of trouble, as this vent has only ever been trialed at great ormond street hospital. but i feel so upset/gutted as nothing ever seems to work for her :'(

Can you ring the sleep lab at GOSH and speak to them about the ventilator? They might be aware of issues connected with it, or may just be able to advise what to do next. I have the number if you're interested.

I'm really sorry :(( must be awfull for all of you, and poor dd :(( sending good vibes and hope things will improve, sometimes they do, just when we are about to give up..xxx

I'm sorry this new treatment hasn't worked out, I hope the medics can find something that helps her soon.

hi sallybear. i cant contact them as she is under sheffield childrens hospital and they are the ones who determine her treatment. she is a very complex case and dont no her history so doubt they could help anyway. her nurse comes to see us tomorro morning, without a plan b but im sure one can be made.

thankyou to everyone else who has replied. im just fed up of nothing working for her. along with this we have just realised her development is behind and has been for quite a while but with her breathing issues we have only just realised! im her mummy and im supposed to make all the abd go away but atm im not doing a very good job

Of course you are doing a good job, piglet. She wouldnt be here without you.

Be kind to yourself

Can you ask the nurse about speaking to GOSH?

Sheffield are able to contact other hospitals to ask for advice, so they could ring GOSH if they're stuck for answers. When my DD was tiny my hospital struggled like mad with her breathing, admitted defeat and transferred her to another hospital where they dx the problem, fixed it and transferred her back again.
I only meant earlier, in terms of the equipment problems that they might be aware of difficulties with that machine iyswim!

Oh piglettsmummy don't beat yourself up! You are doing a grand job!! My DD was delayed because of her condition, late to walk, to talk and to feed. She's now a short 12yr old at MS School who still has respiratory problems but it doesn't stop her.

ahh i get you sallybear! they are in contact with gosh anyway with the machine only ever being trialled there they need some advice. i know our nurse said previously if there were ever any problems they would switch her back immediatly and contact gosh when they could for more advice. i assume when he gets a clearer picture from us tomorro he will be getting in touch with gosh to see what else they can do.

Piglettsmummy, don't take on other people's guilt. Experienced, technologically astute, very specialised hospital staff will already be feeling rubbish that all their machines (so far) are pretty useless. Feeling hopeless cos you're not the UK's leading rare-case respiratory technician is taking maternal guilt a bit further than necessary

Ramp up the professionals' guilt. Get them thinking and maybe someone will have a Eureka moment when walking their dog.

thanks mariammma! i hope they doo! think im getting a bit sick of hearing " errrrrrrmmmm?"