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  #21  
Old 05-05-2010, 10:10 AM
Jen Jen is offline
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Default Re: New and overwhelmed

Hi Annette, Good luck with all you are facing. I know it's overwhelming, but suddenly this will all be over and you will soon start getting back to normal life. Life throws us some doozies at times, doesn't it?
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  #22  
Old 08-05-2010, 10:30 AM
Dom's mum Dom's mum is offline
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Hi Jen & Rodverta,
Thanks for your messages. I feel like we are starting to breathe again after Dominic's Genetics appointment yesterday. They say he doesn't have Marfans BUT we need to go through heart and eye tests again in two years and also get his brother checked out. We will just enjoy until then. Luckily Royce could come too as after two anaesthetics on Wednesday I am not making a lot of sense still. ( Rodverta you certainly understand the joys of growing up in the Aussie sun) Dominic is now feeling a lot better, we had lots of talks and cuddles on Thursday night (when they get to 14 you take them whenever you can). We are worried but looking forward to Wednesday because then hopefully we will know when.
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  #23  
Old 25-05-2010, 09:43 AM
Dom's mum Dom's mum is offline
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Hi all,
A quick update. Went to Sdyney last week, signed the consent forms for surgery and then got told there is up to 18months wait. We go back in 4 months and will then look at going private if there is no news of dates. Also looking at whether it is possible to operate on his chest at the same time and have decided that as a neurotic mum I will have some x-rays done up here in two months for comparison and to make sure there isn't a great deterioration. Perhaps the wait isn't a bad thing as we are catching up and putting ourselves back together after the last couple of months but you worry that it is going to be a lot worse with waiting.
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  #24  
Old 26-05-2010, 06:41 PM
Jen Jen is offline
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Thumbs down Re: New and overwhelmed

The waiting, waiting for everything, seems to be a part of this journey. But perhaps this time, it will give you a chance to come to terms with what's happening. Good luck Dom's Mum, keep us up with your progress, won't you?
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  #25  
Old 01-08-2010, 12:35 PM
Dom's mum Dom's mum is offline
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Default Re: New and overwhelmed

Hi All,
A quick update. We decided to make a private appointment with the doctor and head to Sydney 18th August. More x-rays and both surgeons will be there so hopefully we will come away with a plan. Not wanting to rush Dom into surgery but couldn't sit and wait watching him get worse. He asks questions and I talk when he wants to but it will be better when we know fully what we are dealing with.
Annette
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  #26  
Old 03-10-2010, 08:09 PM
Dom's mum Dom's mum is offline
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Hi all and update on Dominic. We saw specialists privately - curve is lumbar spanning T11 to L4 and has gone from 48 to 55 degrees. We have booked him in for surgery on 22nd November - would have liked it sooner but had to work around when they could do it, his birthday and other sons HSC. This way he will only miss 4 weeks of school and will have the holidays to recover and enjoy. We will also have time to increase the mortgage - those gaps are overwhelming! Not as important as his health but I keep telling myself debt is good.
Dominic is positive about the surgery but upset about going in to hospital the day before for blood tests etc. This is the kid who fainted having his flu shot! We are just concentrating on life at the moment and Iam quietly organizing in the background. The hospital has a social worker and I am going to make contact next week - at last hopefully some professional help to maintain my sanity!
Dominic will have to have chest surgery seperately and I am hoping to have a consultation before his spinal surgery so we know what he is looking at. He will also have to have an orthotic/builtup shoe. Genetic tests again in about 18 months time and I am sure then we will look back and breathe a sigh of relief.
Any hints on how to prepare him for surgery?
Hope everyone is doing well and enjoying some time off over the long weekend.
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  #27  
Old 04-10-2010, 06:00 AM
Jen Jen is offline
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Default Re: New and overwhelmed

Glad to hear things are moving on for Dominic.

A trick I used for anxiety about the surgery was to look forward to a place AFTER surgery, picturing myself getting better every day, what I would be able to do and how I would l spend my time, and picturing a straighter, taller, healthier me! It did work, to a degree, and it was a reminder that I wouldn't be in that anxious place for long. That a better life was just a short wait away.

A needle phobia is something he should grow out of, well, at least it won't always affect him as badly as it does now. It's no fun, having a needle phobia.

Best of luck Dom's Mum and Dominic.
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  #28  
Old 06-10-2010, 12:29 PM
Patricia Patricia is offline
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Default Re: New and overwhelmed

Hi Annette,

Wow.... all the best for Dom's surgery! I've been reading and following your posts along the journey you've been on.

Elysia will be having her surgery, 2nd one, 30th November. We were going to cancel, but have all taken a deep breath and decided it's a green light to proceed.

How to alleviate Dom's anxiety... well, when Leash went the first time around, we too had to be admitted the day before surgery, for blood tests and chest x-rays etc, I kind of made a game of it for her as she was 2 weeks short of her 13th birthday. We took photo's and she made a scrap book of her journey, complete with samples of her pain meds and bandages!! Yuck!

The worst of the whole surgery - was on the Tuesday, we weren't first up, so there was a lot of waiting around..... both our stomachs fell as the nurse came in handing out the little hat and socks to put on, OMG - this is it!!!!! There was tears.... but I can tell you honestly this....

The anxiety BEFORE the surgery was the worst part. I was AMAZED at how fast my child recovered!!!!! I couldn't believe how she went from ICU one day to walking around the ward, up and down stairs 5 days later!!! Kids bounce back so fast, it's remarkable!!!!! Plus they really do look after them on the pain meds side to keep the pain to a minium. There was no child crying out in pain, sobbing like I had imagined, it was all quite calm and relaxed, Leash slept most of the time and when she was feeling better just dying to go home!!!! There is only so much of hosital food one can stomach!!! And hospitals are such noisy places!!!!

All the best for Dom and for you!

Cheers
Trish
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  #29  
Old 18-10-2010, 08:33 PM
Dom's mum Dom's mum is offline
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Default Re: New and overwhelmed

Hi all,
Dominic turned 15 today and it is 5 weeks until his surgery. Happy Birthday here are some pyjamas for hospital! I have gone from wishing the days away to wanting it to slow down. He is going ok, asking more questions and getting nervous. Threw me the other day when he said "they will put me to sleep for six hours and I will wake up and never be the same again." Bit to deep for a then 14 year old. He is positive about it but reality is kicking in more - just things like starting his term of tennis and knowing that he won't be playing for a long time soon.
All good but if one more person points out that it isn't life threatening or that they have scoliosis too I won't be responsible for my actions!
All the best
Annette
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  #30  
Old 18-10-2010, 10:10 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: New and overwhelmed

Hi Annette, please pass on my very best wishes to Dominic on his 15th birthday. In fact, i just arrived home from my future DIL's birthday (just cake and coffee). The nervousness and anxiety is 'healthy' for this kind of surgery, however, and i have read many posts on another forum concerning this, it all seems to 'disappear' , once you reach the theatre. I can relate to this. When they came to get me from my room, i got very tearful, but when i reached the holding bay, a sense of calm came over me........and no, it wasn't the 'happy juice' they give you before anaesthesia, because i didn't have that LOL. My 'personal experience advice' before surgery. Eat well & walk as often as you can to build strength in the lungs (to Dominic). Best wishes to Dominic and you Annette.
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