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Anxious upset

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Ibelive2020
Ibelive2020 Community member Posts: 799 Pioneering
in Coffee lounge
Helló everyone sorry i have nőt Been around much lately as you áll know i have 6 children 3 áré disabled bút i love them with áll my heart each and everyone of my children áré my world 

Had a phonecall on friday evening my son needs tó get admitted intő hospitál 1 night this week he needs tó have a overnight sleep study tóo see if hé has a life threatening condition called obstructive sleep apneoa hes only 12 plus hé has downs syndrome suspected autism and learning difficulties if it túrns out hé has this condition hé needs tó be on oxygen every night for the rest of hís life tó keep hím alive i feel really scared and numb right now i have cried a river of tears over the weekend.
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
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    @Ibelive2020 he is such a lovely little boy and I know its resly hard for you at the moment but at least investigations are being done to see whst his happening 

    I hope you get good news 

    Let us know how it all goes 
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  • Ibelive2020
    Ibelive2020 Community member Posts: 799 Pioneering
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    @lisathomas50 thank you i just feel so lost and alone im nőt sleeping hardly at áll now with worry 
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
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    @Ibelive2020 I know its hard but if your son does need this testament  then you know he will be ok whilst he is sleeping 

    From my experience as a carer it does help and its only needed when sleeping it is a worry for a parent though  and at least it's been recognised  now that there could be a problem 

    There was a  thread about someone eles been on oxygen at night due to the same problem but it was about how to sleep in a comfortable position whilst on the oxygen 

    Hope things get sorted out for your beautiful boy big hugs  see how it goes on Friday  xx
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  • Ibelive2020
    Ibelive2020 Community member Posts: 799 Pioneering
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    @lisathomas50 thank you for being a good friend tóo me and áll the support you áré giving me it really does mean alot i just want tóo say thank you from the bottom of my heart my wonkey donkey happy friend sending big húgs back xxxx
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
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    @Ibelive2020 always here you know that  always willing to help and support anyone that needs help and support 

    If your worried give your dr a ring I am sure they will be happy to  answer any questions 

    Maybe scope have some general information about this condition or maybe another member of the forum I only know very little which you probably already know  thetr are always people here to support you my funky chicken friend ?
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  • Ibelive2020
    Ibelive2020 Community member Posts: 799 Pioneering
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    @lisathomas50 thank you im always here for you 2 xxx
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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
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    Hi @Ibelive2020, I'm sorry to see you so upset and anxious about your son.

    I have obstructive sleep apnoea. If your son's Sleep Study shows that he has this, the doctors and technicians in the sleep lab will be very supportive and show you what you need to do. 
    Your son will most probably be given a machine called a CPAP machine. It doesn't usually deliver oxygen, though it can do if need be. Its main function is to keep the patient's airways open. 
    You will be shown how to use it, please don't be frighten by the gadgets. 

    Your son is still growing and could still grow out of sleep apnoea. If he doesn't, it can be managed. 
    I hope the Sleep Study goes well. 
    I hope this information helps. Sending you and your family my best wishes. 
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  • Ibelive2020
    Ibelive2020 Community member Posts: 799 Pioneering
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    @oxonlady thank you for your support and kind words i have Been told if hé does have this condition thát hé will be on oxygen through the night for the rest of hís life my heads a mess atm im just so scared i do hope thát your ők today and have a calm day 
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  • Oxonlady
    Oxonlady Scope Member Posts: 566 Pioneering
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    Thank you, @Ibelive2020. I've had a really bad week in terms of pain but hopefully things are improving gradually.
    Please try not to be too anxious. Of course you are worried about your son but you'll need a cool head to learn how to use the machine properly. It's not too complicated and it will become routine eventually. Chances are he could still grow out of it, depending on what's causing the obstruction. 
    I feel your pain and anxiety and I wish I could take it away. Sending you a hug and best wishes. 
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  • Ibelive2020
    Ibelive2020 Community member Posts: 799 Pioneering
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    @oxonlady my little boy was born with downs syndrome hé alsó has suspected autism and ön top of this hé has learning difficulties and hypermobility hé was born with a floppy lyrax göd bless hím bút i need tóo stay strong sending you a Húg back i hope your nőt in too much pain 
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  • Sandy_123
    Sandy_123 Scope Member Posts: 50,070 Disability Gamechanger
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    @Ibelive2020 hello what a beautiful little boy on his photo,  I can understand why you feel worried, see what they say when you go to hospital, wishing him all best.
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
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    @Ibelive2020 glad that someone who has experience of this condition can help you and hope that even though I know you will worry that what @Oxonlady has said to you has helped  you  and I thank her for being able to tell you about this condition ?  xx
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Sorry to hear this and understand your upset  I dont  have any wise words but here for support and a virtual shoulder 
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  • Ibelive2020
    Ibelive2020 Community member Posts: 799 Pioneering
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    Thank you everyone means alot xxx
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Sending you huge hugs @Ibelive2020 always here for you ?
    Disability Gamechanger - 2019
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  • [Deleted User]
    [Deleted User] Posts: 1,651 Connected
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    Your son looks like a nice lad, and I'm sure he is :)

    The sleep apnea thing could be ongoing, I'm 40 odd and still have it, even though I don't actually have trouble getting to sleep, on the contrary I probably sleep too much really.


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  • Ibelive2020
    Ibelive2020 Community member Posts: 799 Pioneering
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    @Ami2301 thank you means alot sending húge húgs back always here for you tóo ?
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