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Post by sarahb on Aug 24, 2008 17:52:19 GMT
Just to let you know we went into Bristol CH on 22 July. We are STILL here. Ruby has been back to theatre 6 times. After 7 hours in theatre on 23 July we were in PICU for a week. Things were not quite right and her SATs kept falling very very low. It transpired that all the sutures and ripped open in her heart because the pressures in her heart were too high. So she had to go back for more OHS the back into PICU again. was very frightening as SAT's went down to 20. Since then she has suffered numerous set backs. She has chylothorax, pleural effusions. She weighs what she did a year ago. Its been a rough ride. They have said that because of Ruby's combination of heart defects it was bound to be difficult.
Sarahx
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Post by mum2rachel on Aug 24, 2008 20:25:39 GMT
So sorry to hear that Ruby & you have been having a tough time of it following her surgery. I do hope that things are taking a turn for the better for her . Thinking of you all lots of love & prayers, Susan
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Post by lisajg on Aug 25, 2008 13:47:15 GMT
Thinking of you and Ruby and hope things start to improve for you soon, what a terrible ordeal for all of you. Harrison was in and out of PICU when he was tiny and we had to adjust to living in london when he was at Guy's, have they got a Ronald McDonald house for you to stay in at Bristol? Sending Ruby lots of get well wishes, take care and hope you have some good news soon xxxx
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Post by Rilith on Aug 25, 2008 19:45:36 GMT
((((((((((((((((((((( HUGE HUGS )))))))))))))))))))))) Sorry its been so tough, I hope it will all be worth it in the end. Have they managed to repair anything??? Our surgeons refused to do any repair on Holly because of the huge pressures in the heart I hope with all my heart that they turn around one day soon and say YEY we cracked it.
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Post by claireyd22 on Aug 25, 2008 19:58:02 GMT
I'm so sorry to hear what you are all going through at the moment. Ruby must be a tough little cookie though keeping up the fight like she is. I wish you all the luck in the world and hope you can bring your brave little girl home soon. Lots of love and special hugs to Ruby from Claire xxxx ps. people have been asking after Ruby on the Downs heart website. If you'd like be to post a little message for you I will but didn't want to intrude xxxxx
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Post by sarahb on Aug 26, 2008 18:22:08 GMT
((((((((((((((((((((( HUGE HUGS )))))))))))))))))))))) Sorry its been so tough, I hope it will all be worth it in the end. Have they managed to repair anything??? Our surgeons refused to do any repair on Holly because of the huge pressures in the heart I hope with all my heart that they turn around one day soon and say YEY we cracked it. Hi Rilith They have put a new pulmonary valve in, repaired her complete AVSD and took down the shunt. The also had a go at widening her pulmonary artery with some success but she still has pulmonary stenosis. They have left an asd as they think her heart won't take it and they need a saftey valve for when her pressures get too high. If she gets upset her sats drop a lot and this is the reason for that. As a direct result of the surgery her right side of her heart is very stiff. We have to wait and see how it responds. They also put a conduit in - this will need replacing in future as will her valve. So we have to expect more surgery and intervention over the years. I got the impression that this is always going to be an issue for Ruby. Anyway today was her first day out of bed!!! She is shattered but loved every moment of it. Sarahx
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Post by michelle1987 on Aug 26, 2008 22:50:54 GMT
sorry to hera your going thru soo much hope ruby feels better soon xxx
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Post by Rilith on Aug 27, 2008 16:56:13 GMT
Awwwww hun thats amazing, they have managed to do loads So pleased she is out of bed. give her lots and lots of gentle cuddles from all of us xxxx
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Post by tantalizintina on Aug 27, 2008 18:12:16 GMT
Ahhh poor Ruby... and poor mommy n daddy xxx Hope things start 2 improve soon huni.. lots of love XxX
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Post by odiness on Aug 27, 2008 21:29:26 GMT
Awww Sarah, so sorry things have been so tough for you and Ruby and your family of course. She sounds like a tough cookie though and it must feel great to see her out of bed at last. I can't imagine how helpless any parent must feel seeing their baby put through such major surgery, I hope it all turns out to be worth it and that Ruby bounces back stronger than ever. Loads of hugs, Lucy & Jasmine x
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essexgirl
New Member
Smile, and the world smiles with you
Posts: 10
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Post by essexgirl on Oct 6, 2008 23:12:16 GMT
HI Sarah
We chatted a while ago on the Heartline site. I'm sorry to read that you and Ruby had such a difficult time in hospital and I hope she's on the mend now. YOu must have been glad to get home after so long in hospital! I shall follow Ruby's progress with interest.
Take care Ruth and Lizzie xx
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Post by sarahb on Oct 11, 2008 5:30:31 GMT
Hi Ruth! Of course I remember you!!! We have been home about a month now. It was avery rough ride! Ruby has a few complications which they are keeping an eye on - basically because of all the surgery her trachea was damaged and also her diaphragm is paralised. We don't know yet whether any of this is permanent. Also they have just started her on thyroxine. We are having loads of appointments at the moment.
Anyway! Ruby has put all the weight back on that she lost and is doing very well. She has loads more energy and is no longer dark blue!! Still no sign of walking though.
Lovely to hear from you. What's Lizzie up to?? Sarahx
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Post by debs4 on Oct 11, 2008 22:47:47 GMT
Hi so pleased Ruby is doing well, she sounds similar to Gemma, with regard to her trachea and Gemma is also on thyroxine. Its amazing how they pick up after surgery. Gemma was like a different child. xx
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