children with home ventilation

[fresco]

hi there

i am kind of new on mn, i used to come on the site when ttc.now, just had ds , baby no3, he is 6 weeks but needs help to breeathe with ventilator, has anyone come accross that kind of situation? would just appreciate some kind of advice/witnessing please.
Also my problem is that i am starting to brood again for another one.is it wrong?
thanks

Hi fresco. Congratulations on the birth of your ds.

I'm into touch with mums whose children have home oxygen (through a site for children with heart problems) but I don't think there's anyone with full ventilation as such. A couple have trachys too.

Is this the plan for your little boy, to come home with ventilation? It often takes quite a while to get organised. What sort of timescales are you looking at?

Actually there may be one who was home ventilated, will have to check that.

No advice on the broodiness though. Maybe it's a reaction to what you're going through with this one.

thanks saggar
thanks for your message.
the plan for cameron, is to now stay at the Royal for 2 months , time to run couple of more tests in the hope to find something wrong with him.There is something wrong with him but its underlaying, would be with his nervous system connected to his brain and then transfer him to Edinburgh sick kids hosp to allow him to be in a more homely environenment.That is to see if he would develop, be stimulated in a baby setting etc... and from there i dont know. That is too much in the future just now.Would you know a site witn home ventilation or do you have experiences with family/friend please?

Fresco - it must be hard to not have a diagnosis for Cameron. It sounds like it will be a long road for your family.

I used to to be in contact with a mum who's son has a rare syndrome called Ellis Van Creveld. He has a website and you could probably get in touch with her through that. They are in Scotland, looked after by Yorkhill. He's here . I realise that he doesn't have the same condition but he is home ventilated and she may be able to point you in the direction of some support groups in your area.

I hope this helps and I'll see if I can find some others.

hi

had a look.thanks so much for the sit.dont know how to get in touch with the mum though.but its instructive.Dont know yet whats going to happen with Cameron

Hi

I read these boards everyday but your post made me join!

I just wanted to tell you that I know the mum mentioned below through another board I post on.

Would you like me to send her a message and get her to pop over?

Emma

Ems7 - do I know you from elsewhere? I used to have her e-mail but it's on my defunct PC.

Thanks for helping out & welcome to MN

Not sure - I post on several websites - my daughter has Down syndrome.
Emma

BC maybe? Not posted there in such a long time though. I did wonder if there was anyone on there who'd home ventilated.

Hope dd is doing OK - there are a few mums of children with Down syndrome here.

Hope to see you around

Hi there.

I am Angus' mum. He's 2 1/2 now and still on ventilation and oxygen. He goes to a normal nursery and is in an age appropriate room. The other kids are sweet with him and he gets involved in everything, though some things are harder than others. I am very happy to help out anyone whose kid is either trached or on long term ventilation. It seemed like the end of the world when we realised that was what was ahead, but it really wasn't and we have a pretty good life. Not perfect, but whose is?

Oops! Contact details here:

www.ellisvancreveld.co.uk/contact_us.htm

Cheers!

Angus-you are totally ADORABLE.

Hello Alethia - you won't recognise me with this oddname (I'm an oldie from CHDUK and Heartline) Angus looks fan-bloody-tastic!

Thanks for popping in!

Hi there Saagar! I've been trying to guess, but failing, so drop us a line if you get the time. Thanks for your comments about Angus. Did you clock the wee video of him on the car? He's really come on in leaps and bounds. I'll stop now for fear of hijacking this thread.