Guest guest Posted December 20, 2005 Report Share Posted December 20, 2005 Thinking of Amelie today and always. The Murray Family , Jay, and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Thanks for continuing to keep us all updated Lesley - I am thinking of her & you all everyday. Lesley Chan wrote: Dear All The plan was today to ween Amelie off the oscilator but it didnt happen, she was de satting too often so they will try again tomorrow, it would be better for the physio to get the rubbish off her lungs if she were on the conventional ventilator, because apparently the oscilator shakes the lungs open and keeps them open a little longer than the norm but it proves difficult to move the secretions in order to get them up, I think her arrest were due to pulmonary and not her heart her cardiomyopathy (HOCM) is no worse than the echo done 6 weeks ago so this is another positive. Stable today had another blood transfusion and another chest xray this was her 64th chest xray since birth I cant believe it, there was a slight improvement on this xray which is positive and also it is now day 6 since the two arrests so this is good that she isnt worse. So today I like the word stable. I put the poem up today with her sisters rosary beads on her cot, she looks peacful and with this second transfusion she is getting a little colour back. The bruise on her sternum from all the compressions looks smaller and this pleases me most as she looked so wounded with it, when she went into the first arrest apparently they put a needle directly into her bonemarrow with the life saving drugs because they couldnt get a vein, this looks very sore and is still oozing, they said it didnt go in, in very sterile circumstances which they couldnt help and so they are hoping its not infected. I feel calmer today than yesterday, we have prepared the children that Amelie will not be home at christmas and well their were tears but rather get her home one day than never! The community team have been great they organised extra nursery places for Fleur at her nursery and they are paying for them, which is very kind she is only two and doesnt really know whats going on. Hopefully positive news tomorrow I come home at nights and Darren goes back for me , I feel better knowing one of us is with her. Thanks for all the inspirational posts and prayers Love Lesley Mum to le11 Olivia 9 Fleur 2 and Amelie nearly 1 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 Lesley- So peace has found your family too... I'm so glad to hear that Amelie is doing ok. I hope the weaning goes well tomorrow. If not tomorrow, then the next day, huh? Mostly, I'm glad that your heart is finding some comfort. Blessings to you and yours, Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2005 Report Share Posted December 21, 2005 many more hugs and kisses to you im praying that she will end up liek i allways have better and well have they tried gamuglobulin or how ever u spell that that helped em its an imune thing hugs ellen > > Lesley- > So peace has found your family too... I'm so glad to hear that Amelie is > doing ok. I hope the weaning goes well tomorrow. If not tomorrow, then > the > next day, huh? Mostly, I'm glad that your heart is finding some comfort. > > Blessings to you and yours, > Michele W > Aubrie's mom > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Sounds like little Amelie is a fighter!!! I am glad to hear the good news and we hope you and your family has a wonderful holiday. Murray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Lesley Sounds like good news to me for Christmas. Let's hope Amelie keeps progressing - that's the word for now. Painkillers and alcohol are fun! Don't worry, I'm already off of the painkillers and am drinking a very nice red burgundy tonight. I had a raging temperature last night but it had gone by the morning so I think it was the GA. Flo and I will not have access to email for the next 3 days so I hope when I log back on there will be further progress. Best wishes Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Lesley, I'm glad to hear of Amelie's weaning...hoping for independent breathing really soon. Thinking of you all everyday... Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 great news have a great christmas and new year hope the new year brings much health for amelie hugs ellen > > Lesley, I'm glad to hear of Amelie's weaning...hoping for independent > breathing really soon. Thinking of you all everyday... > > > > > Weir > Home: lisaweir@... > Work: lisa.weir@... > Phone: > Web: http://ca.geocities.com/weirfamilyrogers > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2005 Report Share Posted December 27, 2005 I hope things keep getting better and your holiday was good for you all!! Hugs, Crystal and Eva (8 month charger) > > Dear All > > Amelie was weened of the oscilator during the night onto a > conventional machine, I think this was tactical so we couldnt watch > as things always seem to happen during the night! she has managed > well all day and if she doesnt relapse they will start to give her > chance to do some breaths herself once they have reduced the amount > of sedation. > > I get good vibes especially today she looks so beautiful and lots of > blood has pinked her up. The only apprehension will now be the lack > of oxygen, time will tell. > > SIMON, glad you got the surgery done hit the red not the painkillers > and you will be fine!! dont hit them both together though!!! > > A MERRY CHRISTMAS TO YOU ALL, I WONT BE POSTING TOMORROW STAYING > WITH AMELIE, HERES TO A BETTER NEW YEAR FOR EVERY CHARGER AROUND THE > WORLD, ESPECIALLY THE BABY CHARGERS WHO NEED TO GROW A LITTLE AND > GET STRONGER. > > Lots of love from the UK > Lesley & Darren > le Olivia Fleur and precious Amelie xxxxxx > Quote Link to comment Share on other sites More sharing options...
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