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Old 14-04-2010, 07:38 PM
Dom's mum Dom's mum is offline
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Default New and overwhelmed

Hi everyone,
I am the mum of a newly diagnosed son aged 14. 48degree curvature, he will definitely be having surgery but in the meantime we are having tests for Marfans Syndrome as well, that has really thrown me. Drs great but good to talk to other parents and people who have had the surgery. We go back to specialist mid May to discuss the surgery and I think it will be good to know where we are heading then.
Thanks
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Old 15-04-2010, 11:23 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: New and overwhelmed

Hi Doms Mum and welcome to the forum. Sad to read your post. If there are any specific questions you'd like to ask, please do so. Hopefully some of the mums or adols will chime in here for you. Catchya soon!
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Old 15-04-2010, 01:50 PM
Dom's mum Dom's mum is offline
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Hi Rodverta,
Thanks for making contact. I have lots of questions but haven't sorted them out yet, think I will once we have a surgery date and heart tests are completed as we will have a fuller picture of what we are looking at. At least then we can move forward and deal with what we have to instead of the unknown. Wondering things like getting home from the hospital as we are about 3 hours away,pain.activity, psychological effects etc. Know the Drs will answer a lot but good to have people who have been there.
Thanks
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Old 15-04-2010, 03:02 PM
katherineP katherineP is offline
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Default Re: New and overwhelmed

hi doms mum,
i had my surgery 4 weeks ago so im still in recovery mode. its been slow but okay. ive gained alot of information from others on this forum so if you have any questions please ask away.dont regret doing my surgery and im looking forward to my future pain free (at least less pain) and more confident as ive told others this is the new me !!!!!!
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Old 16-04-2010, 10:26 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Hi Doms Mum, Whereabouts do you live. I know that depending on surgery done and how far you live, they sometimes prefer you to go home in an ambulance. I live in Radelaide! The hospital i was in is about 15-20 minutes from home, so i was allowed home in our car, propped up with pillows of course. Have a greeat day!
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Old 16-04-2010, 10:27 PM
kaitlins mum kaitlins mum is offline
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Hi Doms mum -i am Kaitlins mum. Kaitlin is now 15 and had surgery about a month before her 13th birthday (2008). Her curve was similar at surgery and now apart from a faint scar you would not know anything happened. It is quite an ordeal at the time i have to say but wanted to let you know there is definitely light at the end of the tunnel and i hope we can all help you get through this. Melinda
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Old 16-04-2010, 10:30 PM
kaitlins mum kaitlins mum is offline
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sorry i also wanted to say getting home from hospital, we drove about 1.5 hrs home and the hospital helped us with how to seat Kaitlin. From memory it was fairly reclining in the front seat with pillows. It was almost as scary as driving home with a newborn. Same thing with the first few days at home. Her pain in hospital wasn't the best but monitored very closely and she was off all the heavy duty painkillers after about 8 days. I think it can be quite scary for them wondering will they ever feel normal again, and the answer is definitely yes
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Old 17-04-2010, 07:06 PM
Dom's mum Dom's mum is offline
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Default Re: New and overwhelmed

Quote:
Originally Posted by katherineP View Post
hi doms mum,
i had my surgery 4 weeks ago so im still in recovery mode. its been slow but okay. ive gained alot of information from others on this forum so if you have any questions please ask away.dont regret doing my surgery and im looking forward to my future pain free (at least less pain) and more confident as ive told others this is the new me !!!!!!
Hi Katherine,
Thanks for replying. Good to talk to someone so close from surgery (if you know what I mean). Glad you are doing okay and looking forward to a wonderful future. Can I ask how old you are? Have you had much support from friends outside? I know Dominic's friends are pretty laid back about it, but thinking that is mainly a boy thing or not having been through it themselves. A couple of the Mums are good friends so I thought I would talk to them to get some support for him after surgery. Keep looking after yourself and look forward to talking more. I thought I will involve Dominic once we know where we are heading.
Annette
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Old 17-04-2010, 07:13 PM
Dom's mum Dom's mum is offline
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Default Re: New and overwhelmed

Quote:
Originally Posted by Rodverta Braefusion View Post
Hi Doms Mum, Whereabouts do you live. I know that depending on surgery done and how far you live, they sometimes prefer you to go home in an ambulance. I live in Radelaide! The hospital i was in is about 15-20 minutes from home, so i was allowed home in our car, propped up with pillows of course. Have a greeat day!
Hi Rodverta,
Bet that was a long trip home just that distance. We live in Newcastle and the surgery will be in Sydney, so will be away from our family (including our older son the longest I have ever left him because I am a pathetic mother) and elderly parents. That will all be challenging in itself but I know lots of you will have coped with things like that. It is funny when you are waiting though and you really don't know what you are coping with. This week we have the opthamologist and next week the cardiologist so at least we are doing something even though it is all a bit scary.
Hope you are doing well
Annette
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  #10  
Old 17-04-2010, 07:23 PM
Dom's mum Dom's mum is offline
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Default Re: New and overwhelmed

Quote:
Originally Posted by kaitlins mum View Post
sorry i also wanted to say getting home from hospital, we drove about 1.5 hrs home and the hospital helped us with how to seat Kaitlin. From memory it was fairly reclining in the front seat with pillows. It was almost as scary as driving home with a newborn. Same thing with the first few days at home. Her pain in hospital wasn't the best but monitored very closely and she was off all the heavy duty painkillers after about 8 days. I think it can be quite scary for them wondering will they ever feel normal again, and the answer is definitely yes
Hi Melinda,
Thanks for the reply. Funny about that drive home from hospital, I can still remember the newborn one and the snails pace my husband set! Good to hear Kaitlin has done well. Dominic and I are starting to realize that the "couple of weeks off school" will not be a holiday! How long was Kaitlin off for? Good too to hear the scaring has healed well. I know it is stupid but I keep looking at my beautiful boy and worrying about things like that. We aren't vain but I hate the thought for him. I think once I know when he is going in I will bombard you all with questions.
Thanks again Annette
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