Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 I dont think i ever had this problem. I think my white blood count was always a little low so if i had an ear ache or something as a kid they would say oh you white blood count is normal, your not sick. Same though with fevers. I almost never got fevers. Docs would ask if i had a fever. I dont know how to explain that i never had a fever when i was sick. ive gotten fevers when nothing was wrong with me too! isnt that funny? Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Hi , I remember from way back when K had her first open heart surgery, she required a number of transfusions and platelets were the reason for at least one or more of them. > > Hi All, > > Just a short update... Hayley is on the improve alittle and they are > talkinga about removing the tube and see if she can cope on her own. > > Also, I have a question in relation to blood levels in Chargers,... Hayley > appears to be dropping platlet levels and struggling to make her own. She > has had three transfusions this week and looks to have another one > tomorrow. Has anyone else experience platelet drops after surgery. I know > that it is normal to have bloods during surgery to replace the lost ones > during surgery after being on bypass but a week later is got doctors and > co puzzled (me included). > > Okay better run... going to soak in the bath in peace :-) > > xoxo mum to Hayley 2yr old CHarger. > Australia > > > > > 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 Thanks for the update - give her a hug from way over here... & Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Thanks for the update - give her a hug from way over here... & Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Thanks for the update - give her a hug from way over here... & Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 this sent shivers for me, its identical to Amelie, pneumonias collapsed lungs, and physio, we have now started all this physio round the clock at home to keep the lungs as free from rubbish as we can whilst we wait for next surgery, I know how you feel about catching a cold it happened to me to, its so unbearable not being able to see her, but its best not to risk it, I am certain they will sort Hayley out soon, and we will be praying for you all, god bless you all love and hugs Lesley x Amelie x and Fam > , > > I am praying for Hayley. May she continue to be strong and may she get > better soon. > > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 get out soon lo e u > > , > Sending you prayers across the Nullabor... > Thinking of you, > hugs, Sharon > > > >Hi all, > > > >I finally got to see my little girl last night.... she looks a little > >better than when I last saw her a week ago. > > > >Still ventilated, lungs still shitty. They tried to unventilate her the > >other day and not too good... she had many apnea spells and the > ventilator > >was turned back on. > >The talking plan is to try again to see if she goes okay on her own > >tomorrow but they said continously dont get your hopes up... so I am not. > > > >Just taken day by day that is all you can do I guess. They said we are > >here in Sydney, 2 hours from home, for a while at the least 1 month... > >Anyway, I will go now... my family have come to sydney for the weekend. I > >will give you an update when I can as to how she goes being unventilated > >for the 4 time. > > > >Thanks for your thoughts and prayers, they are being well received. And > >bless to all that having rough times at the moment and up coming surgery. > >I might not say much but I am always thinking of you and wishing well. > > > >Love xoxoo > >Mum to Hayley 2years > >Sydney, Australia at the moment. > > > > > > > > > > > > > > > > > >> > >> this sent shivers for me, its identical to Amelie, pneumonias > >> collapsed lungs, and physio, we have now started all this physio round > >> the clock at home to keep the lungs as free from rubbish as we can > >> whilst we wait for next surgery, > >> I know how you feel about catching a cold it happened to me to, its so > >> unbearable not being able to see her, but its best not to risk it, > >> > >> I am certain they will sort Hayley out soon, and we will be praying > >> for you all, god bless you all > >> > >> love and hugs Lesley x Amelie x and Fam > >> > >> > >>> , > >>> > >>> I am praying for Hayley. May she continue to be strong and may she > get > >>> better soon. > >>> > >>> > >>> > >>> > >>> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 get out soon lo e u > > , > Sending you prayers across the Nullabor... > Thinking of you, > hugs, Sharon > > > >Hi all, > > > >I finally got to see my little girl last night.... she looks a little > >better than when I last saw her a week ago. > > > >Still ventilated, lungs still shitty. They tried to unventilate her the > >other day and not too good... she had many apnea spells and the > ventilator > >was turned back on. > >The talking plan is to try again to see if she goes okay on her own > >tomorrow but they said continously dont get your hopes up... so I am not. > > > >Just taken day by day that is all you can do I guess. They said we are > >here in Sydney, 2 hours from home, for a while at the least 1 month... > >Anyway, I will go now... my family have come to sydney for the weekend. I > >will give you an update when I can as to how she goes being unventilated > >for the 4 time. > > > >Thanks for your thoughts and prayers, they are being well received. And > >bless to all that having rough times at the moment and up coming surgery. > >I might not say much but I am always thinking of you and wishing well. > > > >Love xoxoo > >Mum to Hayley 2years > >Sydney, Australia at the moment. > > > > > > > > > > > > > > > > > >> > >> this sent shivers for me, its identical to Amelie, pneumonias > >> collapsed lungs, and physio, we have now started all this physio round > >> the clock at home to keep the lungs as free from rubbish as we can > >> whilst we wait for next surgery, > >> I know how you feel about catching a cold it happened to me to, its so > >> unbearable not being able to see her, but its best not to risk it, > >> > >> I am certain they will sort Hayley out soon, and we will be praying > >> for you all, god bless you all > >> > >> love and hugs Lesley x Amelie x and Fam > >> > >> > >>> , > >>> > >>> I am praying for Hayley. May she continue to be strong and may she > get > >>> better soon. > >>> > >>> > >>> > >>> > >>> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 , Yes, take it one day at a time and if you can't do that then take it an hour at a time, or a minute at a time or a moment.... Yes, know the worse and best case scenario but do keep that hope in your heart. Sometimes hope is all we have. Your hope and dreams should be realistic. Don't hope for the unattainable, just hope for the attainable and then when that's met find something new to hope for. May she get of the vent soon. We are wishing you well. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 , Yes, take it one day at a time and if you can't do that then take it an hour at a time, or a minute at a time or a moment.... Yes, know the worse and best case scenario but do keep that hope in your heart. Sometimes hope is all we have. Your hope and dreams should be realistic. Don't hope for the unattainable, just hope for the attainable and then when that's met find something new to hope for. May she get of the vent soon. We are wishing you well. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Yippee!!!!! Now the next hope..... Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Yippee!!!!! Now the next hope..... Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 last email i saw bonnei it said she was off again so YAY > > , > > Yes, take it one day at a time and if you can't do that then take it an > hour > at a time, or a minute at a time or a moment.... > > Yes, know the worse and best case scenario but do keep that hope in your > heart. Sometimes hope is all we have. Your hope and dreams should be > realistic. > Don't hope for the unattainable, just hope for the attainable and then > when > that's met find something new to hope for. > > May she get of the vent soon. > > We are wishing you well. > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 last email i saw bonnei it said she was off again so YAY > > , > > Yes, take it one day at a time and if you can't do that then take it an > hour > at a time, or a minute at a time or a moment.... > > Yes, know the worse and best case scenario but do keep that hope in your > heart. Sometimes hope is all we have. Your hope and dreams should be > realistic. > Don't hope for the unattainable, just hope for the attainable and then > when > that's met find something new to hope for. > > May she get of the vent soon. > > We are wishing you well. > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 That's wonderful news!!! You must be so anxious to get her home. > > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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 That's wonderful news!!! You must be so anxious to get her home. > > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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 VERY ;-0 > That's wonderful news!!! You must be so anxious to get her home. > > > > >> >> Hi all just a quick note to say that Hayley has improved out of site and >> is on the way home this week. >> >> The plan is to go home Thursday,,, so please fingers and legs cross to >> this happening... I would very much love to take my Little miss home >> after >> six weeks in hospital this coming Wednesday. >> >> Hope is all well for you all... ( I am way way way behind on the emails) >> >> Love NIcole xoxo >> >> Australia >> >> >> >> >> >> 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 VERY ;-0 > That's wonderful news!!! You must be so anxious to get her home. > > > > >> >> Hi all just a quick note to say that Hayley has improved out of site and >> is on the way home this week. >> >> The plan is to go home Thursday,,, so please fingers and legs cross to >> this happening... I would very much love to take my Little miss home >> after >> six weeks in hospital this coming Wednesday. >> >> Hope is all well for you all... ( I am way way way behind on the emails) >> >> Love NIcole xoxo >> >> Australia >> >> >> >> >> >> 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 VERY ;-0 > That's wonderful news!!! You must be so anxious to get her home. > > > > >> >> Hi all just a quick note to say that Hayley has improved out of site and >> is on the way home this week. >> >> The plan is to go home Thursday,,, so please fingers and legs cross to >> this happening... I would very much love to take my Little miss home >> after >> six weeks in hospital this coming Wednesday. >> >> Hope is all well for you all... ( I am way way way behind on the emails) >> >> Love NIcole xoxo >> >> Australia >> >> >> >> >> >> 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 - I hope things move along well so that Hayley comes home as planned... I've got everything crossed for you! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 - I hope things move along well so that Hayley comes home as planned... I've got everything crossed for you! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 - I hope things move along well so that Hayley comes home as planned... I've got everything crossed for you! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 , Heck, I'll still be keeping fingers crossed that you can get her home soon. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 , Heck, I'll still be keeping fingers crossed that you can get her home soon. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 , Heck, I'll still be keeping fingers crossed that you can get her home soon. Bonnie Quote Link to comment Share on other sites More sharing options...
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