Anxious upset
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Ibelive2020
Community member Posts: 799 Pioneering
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.
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.
Comments
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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 -
@lisathomas50 thank you i just feel so lost and alone im nőt sleeping hardly at áll now with worry
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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 -
@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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@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 ? -
@lisathomas50 thank you im always here for you 2 xxx
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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. -
@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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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. -
@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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@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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@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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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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Thank you everyone means alot xxx
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Sending you huge hugs @Ibelive2020 always here for you ?Disability Gamechanger - 2019
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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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@Ami2301 thank you means alot sending húge húgs back always here for you tóo ?
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