Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 glad she is improving a note about propanalol be careful with that did she have low blodo preasure course that medication did that to me to it acutlay madeit go down so we stoped it maybe you could ask them to try taking it off for a while jsut to see if my theory is right jsut say that one of the other charge people on the list had exact that same thing with that med see what they say and also i was older so i didnt go so bad as amelie did but i still went faint and heart rate went up and low blood seems like its the med to me wierd isnt it keepign my hopes up for ylu all and hope you find peace in the new year > > Dear All > > Thanks , Amelie has had TPN for months when she was really > sick, but after the 24 hours following her two arrests they started > to feed her usual neocate through her gastrostomy but they started > of at only 5mls per hour and went up slowly, she only has 40mls of > milk per hour on a normal day over 20 hours of milk feeds and 4 > hours off, and she has had ups and downs with her blood sugars > because yesterday they started her feed earlier than the four hour > break and i asked why they said her sugars were low, so you know > what i think youre right this could be the problem something so > simple would be nice. > > I am going to the hospital at lunchtime today, trying to spend time > with the eldest two girls they seem fed up as well I think its my > fault they are probably getting bad vibes from me, so today I am > dancing to ABBA and trying to look overly happy, not sure they are > wearing it though! > Darren has just rang me to say she is very well today (YIPEEEEEE) > and they are keen to wean, the ECG study thing was ok and they seem > to think the sedative could have reacted with her propranolol and > maybe that caused the brady things! so they have given her some kind > of steroid to take down any swelling were the tube has been, now > this is from Darren and he can usually get mixed up so dont quote me > on this until i get there. > > You all gave me some very positive and kind words about how and why > charge, I also enjoyed reading Megs post on the paternal age as well > so I feel better knowing In my own mind if one of us had to take the > blame then it was both of us ( were both oldies and I can cope with > that) I can remember when we had no diagnosis and no one knew what > was wrong with Amelie, and as mums carrying your child its the first > thing you do , you search for clews and blame yourself, I even asked > the Doctor to check for Toxoplasmosis as I love gardening and i > thought maybe this was it I had touched some soil or something, > really crazy I know but you get so desperate for answers, anyhow to > cut a long story short I have started my assignment late last night > and its coming on nicely. > > The best new year for us now would be for Amelie to come of the vent > and stay off! > > Love to you all > Lesley > Mum to le 11 Olivia 9 Fleur 2 and Amelie nearly 1 (UK) > > > > > > > > > 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 30, 2005 Report Share Posted December 30, 2005 um if anyoen else has had this experience with proanalol it would be itneresting to knwo or is it jsut us two its wierd oh well > > glad she is improving a note about propanalol be careful with that did she > have low blodo preasure course that medication did that to me to it acutlay > madeit go down so we stoped it maybe you could ask them to try taking it off > for a while jsut to see if my theory is right jsut say that one of the other > charge people on the list had exact that same thing with that med see what > they say and also i was older so i didnt go so bad as amelie did but i still > went faint and heart rate went up and low blood seems like its the med to me > wierd isnt it keepign my hopes up for ylu all and hope you find peace in the > new year > > > > > > Dear All > > > > Thanks , Amelie has had TPN for months when she was really > > sick, but after the 24 hours following her two arrests they started > > to feed her usual neocate through her gastrostomy but they started > > of at only 5mls per hour and went up slowly, she only has 40mls of > > milk per hour on a normal day over 20 hours of milk feeds and 4 > > hours off, and she has had ups and downs with her blood sugars > > because yesterday they started her feed earlier than the four hour > > break and i asked why they said her sugars were low, so you know > > what i think youre right this could be the problem something so > > simple would be nice. > > > > I am going to the hospital at lunchtime today, trying to spend time > > with the eldest two girls they seem fed up as well I think its my > > fault they are probably getting bad vibes from me, so today I am > > dancing to ABBA and trying to look overly happy, not sure they are > > wearing it though! > > Darren has just rang me to say she is very well today (YIPEEEEEE) > > and they are keen to wean, the ECG study thing was ok and they seem > > to think the sedative could have reacted with her propranolol and > > maybe that caused the brady things! so they have given her some kind > > of steroid to take down any swelling were the tube has been, now > > this is from Darren and he can usually get mixed up so dont quote me > > on this until i get there. > > > > You all gave me some very positive and kind words about how and why > > charge, I also enjoyed reading Megs post on the paternal age as well > > so I feel better knowing In my own mind if one of us had to take the > > blame then it was both of us ( were both oldies and I can cope with > > that) I can remember when we had no diagnosis and no one knew what > > was wrong with Amelie, and as mums carrying your child its the first > > thing you do , you search for clews and blame yourself, I even asked > > the Doctor to check for Toxoplasmosis as I love gardening and i > > thought maybe this was it I had touched some soil or something, > > really crazy I know but you get so desperate for answers, anyhow to > > cut a long story short I have started my assignment late last night > > and its coming on nicely. > > > > The best new year for us now would be for Amelie to come of the vent > > and stay off! > > > > Love to you all > > Lesley > > Mum to le 11 Olivia 9 Fleur 2 and Amelie nearly 1 (UK) > > > > > > > > > > > > > > > > > > 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 30, 2005 Report Share Posted December 30, 2005 Lesley- Must be hard to keep on a good face for the girls, but aren't you thankful you have them to push you to it?? I remember thinking how lucky I was to have . He was 6 when Aubrie was born. Because of him, we had to put up the Christmas tree and do the gifts etc even tho my heart didn't want to. Because of him, we had to go and do in spite of the difficulties in packing around Aubrie's equipment -- but we did it anyway -- to her benefit and ours. He's been such an incredible blessing in keeping me from hiding under a rock. Keep the ABBA rolling and keep smiling, dancing and singing. Even when your heart doesn't feel like it, it's best for the girls, for you, and for Amelie. I hope you find her doing well this afternoon. Michele W Aubrie's mom 8 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Fingers crossed for a vent-free New Year's Eve Celebration!!! Love to all, 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 30, 2005 Report Share Posted December 30, 2005 , I am slow. Is Amelie still on the TPN or weaned to a small rate right now that she is also receiving her formula via continuous drip? I know that we check blood sugars every 6 hours in the hospital while a patient is on TPN. If the sugars are STABLE we will go to every 12 hours. It sounds like Amelie would be a candidate for every 6 hours and a slow wean (meaning checking every 8 hours if they stabilized and then eventually wean more). I don't know how the do it in the UK though. I am so glad she's doing better. Keep looking for the positive. I think all of at one time or another wondered if we did something to cause our child to have CHARGE (before the diagnosis or maybe even after). I know I did. I even had a postpartum nurse tell me that if I would have come to the hospital sooner that my child wouldn't have any problems (she was an old hag). That just killed me. Boy did I have guilt for a short while! Needless to say, she was wrong! May she continue to progress. I am so glad to keep hearing good news. Do you think it is the Abba music? I could listen to mine too!! Kristy Amelie Chan Dear All Thanks , Amelie has had TPN for months when she was really sick, but after the 24 hours following her two arrests they started to feed her usual neocate through her gastrostomy but they started of at only 5mls per hour and went up slowly, she only has 40mls of milk per hour on a normal day over 20 hours of milk feeds and 4 hours off, and she has had ups and downs with her blood sugars because yesterday they started her feed earlier than the four hour break and i asked why they said her sugars were low, so you know what i think youre right this could be the problem something so simple would be nice. I am going to the hospital at lunchtime today, trying to spend time with the eldest two girls they seem fed up as well I think its my fault they are probably getting bad vibes from me, so today I am dancing to ABBA and trying to look overly happy, not sure they are wearing it though! Darren has just rang me to say she is very well today (YIPEEEEEE) and they are keen to wean, the ECG study thing was ok and they seem to think the sedative could have reacted with her propranolol and maybe that caused the brady things! so they have given her some kind of steroid to take down any swelling were the tube has been, now this is from Darren and he can usually get mixed up so dont quote me on this until i get there. You all gave me some very positive and kind words about how and why charge, I also enjoyed reading Megs post on the paternal age as well so I feel better knowing In my own mind if one of us had to take the blame then it was both of us ( were both oldies and I can cope with that) I can remember when we had no diagnosis and no one knew what was wrong with Amelie, and as mums carrying your child its the first thing you do , you search for clews and blame yourself, I even asked the Doctor to check for Toxoplasmosis as I love gardening and i thought maybe this was it I had touched some soil or something, really crazy I know but you get so desperate for answers, anyhow to cut a long story short I have started my assignment late last night and its coming on nicely. The best new year for us now would be for Amelie to come of the vent and stay off! Love to you all Lesley Mum to le 11 Olivia 9 Fleur 2 and Amelie nearly 1 (UK) 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<http://www.chargesyndrome.org/> - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling 1-. Quote Link to comment Share on other sites More sharing options...
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