Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Hi all, Just a quick update on Hayley. Hayley had her open heart on April 6th. Surgery was a success (thankfully). Heart is doing beautifully. Unfortunately Hayley has gotten quiet sick after surgery. She got Pnomenia (sp) and there fore stayed venitlated until Easter Saturday. She went to the heart kids ward on easter sunday and appeared to be coping quiet well. Three days into her stay on the ward she started going out of sorts. lots of doctors from all over the hospital came to her bedside, and x-ray was ordered and it showed that her lungs had collapsed, so therefore she was rushed back to ICU and put on CPAP. After a while it was decided that this was not working for Hayley and it was time to reventilate her. Hayley is currently still ventilated in ICU and all that can be done for at the momement is continuous physio. Physio is attacking her 4 times a day hoping for results soon. Anyway better go, heading back to Sydney today as I had come back to Newcastle as I became sick with a cold. Looking forward to seeing my daughter has it has been 6 days. Take care to all..... Best of luck Eva for you surgery... I am sure you will be fine... you are a true fighter just like Hayley and all our other CHARGEr's. Lots of love mum to Hayley 2yrs Australia PS hope the above makes sense .. the old brain is rather worn out Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 how madddddd give her a hug from me > > oh gosh! what a rollercoaster ride for you all. Speedy recovery, smiles > and hugs - I hope you arrive in Sydney with Hayley more than ready to come > home- > > best always- > > yuka > Hayley Update > > > > Hi all, > > > > Just a quick update on Hayley. > > > > Hayley had her open heart on April 6th. Surgery was a success > > (thankfully). Heart is doing beautifully. Unfortunately Hayley has > gotten > > quiet sick after surgery. She got Pnomenia (sp) and there fore stayed > > venitlated until Easter Saturday. She went to the heart kids ward on > > easter sunday and appeared to be coping quiet well. Three days into her > > stay on the ward she started going out of sorts. lots of doctors from > all > > over the hospital came to her bedside, and x-ray was ordered and it > showed > > that her lungs had collapsed, so therefore she was rushed back to ICU > and > > put on CPAP. After a while it was decided that this was not working for > > Hayley and it was time to reventilate her. > > > > Hayley is currently still ventilated in ICU and all that can be done for > > at the momement is continuous physio. Physio is attacking her 4 times a > > day hoping for results soon. > > > > Anyway better go, heading back to Sydney today as I had come back to > > Newcastle as I became sick with a cold. Looking forward to seeing my > > daughter has it has been 6 days. > > > > Take care to all..... Best of luck Eva for you surgery... I am sure you > > will be fine... you are a true fighter just like Hayley and all our > other > > CHARGEr's. > > > > Lots of love > > mum to Hayley 2yrs > > Australia > > PS hope the above makes sense .. the old brain is rather worn out > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 26, 2006 Report Share Posted April 26, 2006 how madddddd give her a hug from me > > oh gosh! what a rollercoaster ride for you all. Speedy recovery, smiles > and hugs - I hope you arrive in Sydney with Hayley more than ready to come > home- > > best always- > > yuka > Hayley Update > > > > Hi all, > > > > Just a quick update on Hayley. > > > > Hayley had her open heart on April 6th. Surgery was a success > > (thankfully). Heart is doing beautifully. Unfortunately Hayley has > gotten > > quiet sick after surgery. She got Pnomenia (sp) and there fore stayed > > venitlated until Easter Saturday. She went to the heart kids ward on > > easter sunday and appeared to be coping quiet well. Three days into her > > stay on the ward she started going out of sorts. lots of doctors from > all > > over the hospital came to her bedside, and x-ray was ordered and it > showed > > that her lungs had collapsed, so therefore she was rushed back to ICU > and > > put on CPAP. After a while it was decided that this was not working for > > Hayley and it was time to reventilate her. > > > > Hayley is currently still ventilated in ICU and all that can be done for > > at the momement is continuous physio. Physio is attacking her 4 times a > > day hoping for results soon. > > > > Anyway better go, heading back to Sydney today as I had come back to > > Newcastle as I became sick with a cold. Looking forward to seeing my > > daughter has it has been 6 days. > > > > Take care to all..... Best of luck Eva for you surgery... I am sure you > > will be fine... you are a true fighter just like Hayley and all our > other > > CHARGEr's. > > > > Lots of love > > mum to Hayley 2yrs > > Australia > > PS hope the above makes sense .. the old brain is rather worn out > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 26, 2006 Report Share Posted April 26, 2006 how madddddd give her a hug from me > > oh gosh! what a rollercoaster ride for you all. Speedy recovery, smiles > and hugs - I hope you arrive in Sydney with Hayley more than ready to come > home- > > best always- > > yuka > Hayley Update > > > > Hi all, > > > > Just a quick update on Hayley. > > > > Hayley had her open heart on April 6th. Surgery was a success > > (thankfully). Heart is doing beautifully. Unfortunately Hayley has > gotten > > quiet sick after surgery. She got Pnomenia (sp) and there fore stayed > > venitlated until Easter Saturday. She went to the heart kids ward on > > easter sunday and appeared to be coping quiet well. Three days into her > > stay on the ward she started going out of sorts. lots of doctors from > all > > over the hospital came to her bedside, and x-ray was ordered and it > showed > > that her lungs had collapsed, so therefore she was rushed back to ICU > and > > put on CPAP. After a while it was decided that this was not working for > > Hayley and it was time to reventilate her. > > > > Hayley is currently still ventilated in ICU and all that can be done for > > at the momement is continuous physio. Physio is attacking her 4 times a > > day hoping for results soon. > > > > Anyway better go, heading back to Sydney today as I had come back to > > Newcastle as I became sick with a cold. Looking forward to seeing my > > daughter has it has been 6 days. > > > > Take care to all..... Best of luck Eva for you surgery... I am sure you > > will be fine... you are a true fighter just like Hayley and all our > other > > CHARGEr's. > > > > Lots of love > > mum to Hayley 2yrs > > Australia > > PS hope the above makes sense .. the old brain is rather worn out > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 May 8, 2006 Report Share Posted May 8, 2006 Nichole, Had to laugh visualising Crystal with the list of everything crossed. All the same, also keeping lots of positive thoughts going that Hayley comes home very soon. Flo (mum to 6 in two weeks - CHARGE and Elly age 4 in two months). > > , > I have my fingers, toes, feet, legs, arms, and eyes crossed that she > comes home soon...LOL! > Sounds like she is doing great!! > > Hugs, > Crystal and Eva (1 year old CHARGEr) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Nichole, Had to laugh visualising Crystal with the list of everything crossed. All the same, also keeping lots of positive thoughts going that Hayley comes home very soon. Flo (mum to 6 in two weeks - CHARGE and Elly age 4 in two months). > > , > I have my fingers, toes, feet, legs, arms, and eyes crossed that she > comes home soon...LOL! > Sounds like she is doing great!! > > Hugs, > Crystal and Eva (1 year old CHARGEr) > Quote Link to comment Share on other sites More sharing options...
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