Viewing 13 posts - 1 through 13 (of 13 total)
  • #74398
    Night ventilation

    Does anyone know about or have experience of night ventilation?
    We have just been told that our son needs to start on it. He is only 4
    and i feel devastated, like we have just been given the diagnosis all over again.
    He already has a PEG feed at night so the thought of more tubes and more upset
    for him is hard to take. I know it is meant to help him but i hate the whole idea of
    it.
    Any help or advice would be great.

    amymorris
    Participant
    Posts: 24
    Joined: 30/10/2011
    #85476
    Re: Night ventilation

    Thanks your post.

    Sorry you are having a worrying time.

    We have discussed night ventilation at length on various different threads. In fact so much
    so that one of our “Queen Bees” Sar78 has taken the trouble to amalgamate them all on a single place
    on this forum. Here it is :-

    viewtopic.php?f=2&t=2742

    Amazingly the reason I have linked to the forum today was to thank the forum members for all their help
    with my CPAP machine. I was very worried by the very idea of it and the first two days were a nightmare. Regular
    members gave me an immense amount of help and the problem was rapidly solved and is now just
    a normal part of life. The benefits I would not be without.

    Somehow find a way to stick with it for the first difficult period.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #85477
    Re: Night ventilation

    It can be difficult to adapt to the idea of it and I cannot put myself in your position as a parent but it really does become another part of every day life. I recently tuned in to a seminar online about respiratory management and although I am a bit of a veteran in terms of using NIV I learnt a lot about the advantages of respiratory intervention, overall a positive message was conveyed. I am going to post a link to it once the recording is put up on the website.

    Please feel free to ask any questions you may have. There have been improvements in terms of masks/tubes etc. in the time that I have been using it, much less intrusive than when I first got a BIPAP. I hope everything goes ok and your son adapts quickly once he is started on NIV.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #85478
    Re: Night ventilation

    Thank you – i have looked at the previous posts about ventilation and it has helped.
    I was hoping there was someone out there in my position with a young child who has gone through it,
    He is just so little and trying to explain it all will be pretty hard.
    x

    amymorris
    Participant
    Posts: 24
    Joined: 30/10/2011
    #85479
    Re: Night ventilation

    Hmmm sorry, was a lot older than 4 when I started! I would say though that it does take some persistence to get used to it so be prepared for a tired little boy initially, he will get used to it though. I can’t sleep without mine now! It feels really strange the first time you turn on the machine with the mask on – it’s a bit like when you are in a really strong wind and it makes you want to hold your breath or turn your face away instead of breathing with it which is what you’re meant to do. Getting over that initial strangeness actually doesn’t take very long at all though it’s the getting used to sleeping with it on that takes a bit longer.

    Regarding humidifiers – they started me without one and then added one when I wasn’t managing to sleep very well and it made a huge difference. On these boards and other people I know through my Mum all say how much better it is with a humidifier so I think I’d push to have one from the start. It’s another piece of kit so I don’t take it away with me – once I got used to the vent I was able to reduce the setting on the humidifier and then do without it completely if needed.

    Maybe it would help to think of a name for it together? I call mine my heavy breathing friend – possibly not so appropriate for a 4 year old!!!

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #85480
    Re: Night ventilation

    Hi, you may find the book http://www.asiliveandbreathe.co.uk/

    “Our recent publication is a children’s illustrated book about using a CPAP machine:
    “A Monkey, a Mouse and a CPAP Machine”.

    WINNER (pre-school picture book category 2011) of The Wishing Shelf Independent Book Awards.”

    helpful ? It’s about helping children get used to parents/friends who use BIPAP but I wondered if the pictures or story might help you/your child/friends/peers etc? I heard about it as there is an adult equivalent of the book about living with cpap/bipap support I was getting.

    I only started bipap as an adult but I did notice, also, YouTube videos from parent of young children talking about life with BIPAP so that might help perhaps?

    Hope it goes well x

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #85481
    Re: Night ventilation

    Hi Amy

    Please send me your contact details – email me at r.martin@muscular-dystrophy.org – I can put you in contact with a family.

    Warm regards
    Ruth

    writerRuth
    Participant
    Posts: 141
    Joined: 22/06/2011
    #85482
    Re: Night ventilation

    Thank you – sorry for the delay, i couldn’t remember my password so couldn’t get on!
    Thank you for all the positive advice – we are about to start it all so fingers crossed.

    amymorris
    Participant
    Posts: 24
    Joined: 30/10/2011
    #85483
    Re: Night ventilation

    Hi Amy, my name is Mel, and I have a three and a half year old son who has been on overnight non invasive ventilation since the age of 5 months. It was frightening for us at first, but to see the progress he has made because of the ventilation is just fantastic. We managed the overnight care ourselves for 18 months and were then offered help in the form of overnight carers who come in 6 nights per week. this has really worked for us and the benefits are massive. You do get used to the noise and for us its simply part of our Son’s routine now. We also have a fantastic support network in the form of Ethan’s respiritory consultant and his home ventilation nurse specialist who even though she is based in Bristol, visits us at home in Torquay. She has wealth of knowledge and has been our lifeline in this process. If you would like to talk, please send me a message, as I know just what you must be going through.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #85484
    Re: Night ventilation

    Thanks mel – ruth has just forwarded me your details so i will e-mail you if that is alright.
    Still sporadically bursting into tears when talking about it so you might not get much sense out of me on the phone!

    amymorris
    Participant
    Posts: 24
    Joined: 30/10/2011
    #85485
    Re: Night ventilation

    Hi Amy, please do email or phone, I would love to talk to you. We did not know any other children who were on overnight ventilation so it has been a very steep learning curve for us. Ethan is also peg fed via a pump overnight and bolus feeds during the day, and I cannot emphasise enough the massive difference the ventilation has made to Ethan. Email soon, and take care. Remember you are not alone and there is great support out there.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #85486
    Re: Night ventilation

    @amymorris wrote:

    Does anyone know about or have experience of night ventilation?
    We have just been told that our son needs to start on it. He is only 4
    and i feel devastated, like we have just been given the diagnosis all over again.
    He already has a PEG feed at night so the thought of more tubes and more upset
    for him is hard to take. I know it is meant to help him but i hate the whole idea of
    it.
    Any help or advice would be great.

    Why on earth has he been put on this already!? may i ask what dystrophy your son has? I have Duchenne and didnt use BiLevel machine til i was 20 and even then just a trial!

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #85487
    Re: Night ventilation

    I have heard of young children being on Bi-pap early. It can be that there are other complications apart from MD but it is also dependent on the variety, of which there are many. I have a type of CMD, I started Bipap at 15 but now I realise I should have been on it before – there is a lot of variety on age that Bipap is introduced within this subgroup.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
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