Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 Oh Lesley, I am so sorry. I dont know what to tell you since Eva is not on oxygen. I know she also has senitive skin but she does not always have tape on her face. She broke out from the tape she had on on friday from her sleep study not it just takes time to go away. But Amelie has to have it on all the time so I dont know what to so. I wish I could help you, I hope she fells less pain soon. All our babies are so sensitive. Hugs, Crystal and Eva (8 month charger) > > DEAR ALL > > Settling home with Amelie, although she seems very still and delicate, > not back to herself at all, we are struggling with the oxygen nasal > prongs her skin around her nostrils is broke and raw she cries when we > try to wipe her secretions, which is 24/7 I have used vaseline but now > they tell me I cant use it not with oxygen, > > any ideas on how to help her it looks so painful and she seems > miserable? > > Thanks > Lesley > Mum to le 11 Olivia 9 Fleur 2 and Amelie Nearly one! (UK) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 , We only use tissues with lotion because our son(Charger)Jo-Jo has the same non stop flow action 24/7. We also use a suction machine but in your case it seems that would be unnecessary right now. You may want to apply neosporin with pain relief if the tissue is cracking to heal and use as a preventative for future cracking but I would consult your physician first and foremost. Hope I've helped. Best Regards, Joe Bonomolo, Gwendelyn, Chloe 4 y.o., Jo-Jo(2 1/2 y.o. charger) & 1y.o. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 When my son was little, he use to tear off the oxegyn, and he needed it (he was very fisty, still is). We use to tape the blow-by to his shirt and point it in his face. Especially when he was sleeping. Debbie Matasker ANY IDEAS DEAR ALL Settling home with Amelie, although she seems very still and delicate, not back to herself at all, we are struggling with the oxygen nasal prongs her skin around her nostrils is broke and raw she cries when we try to wipe her secretions, which is 24/7 I have used vaseline but now they tell me I cant use it not with oxygen, any ideas on how to help her it looks so painful and she seems miserable? Thanks Lesley Mum to le 11 Olivia 9 Fleur 2 and Amelie Nearly one! (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 15, 2005 Report Share Posted December 15, 2005 welcome im just thinking we should put that our kids site as a link on the charge serve its looks good i had a quick look where are you from im 20 with charge ddint get diagnosed till three months and i knwo there are people who didnt get diagnosed till later bonnie corect me if im wrong but patty didnt get diagnosed till 14 and there are others with same lengths of time think patty may be the longest oneim not sure though but i have ears cleft palate tummy probs and other stuff im from aus to hugs ellen > > , > > We only use tissues with lotion because our son(Charger)Jo-Jo has the same > non stop flow action 24/7. We also use a suction machine but in your case > it > seems that would be unnecessary right now. You may want to apply neosporin > with pain relief if the tissue is cracking to heal and use as a > preventative for > future cracking but I would consult your physician first and foremost. > Hope > I've helped. > > Best Regards, > > Joe Bonomolo, Gwendelyn, Chloe 4 y.o., Jo-Jo(2 1/2 y.o. charger) > & > 1y.o. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 lesly one think i know this isnt a stoma but what we allwasy do for ti is put tinea powder arond the thing befro taping ti up hugs ellen > > welcome im just thinking we should put that our kids site as a link > on the charge serve its looks good i had a quick look where are you from im > 20 with charge ddint get diagnosed till three months and i knwo there are > people who didnt get diagnosed till later bonnie corect me if im wrong but > patty didnt get diagnosed till 14 and there are others with same lengths of > time think patty may be the longest oneim not sure though but i have ears > cleft palate tummy probs and other stuff im from aus to hugs ellen > > > > > > , > > > > We only use tissues with lotion because our son(Charger)Jo-Jo has the > > same > > non stop flow action 24/7. We also use a suction machine but in your > > case it > > seems that would be unnecessary right now. You may want to apply > > neosporin > > with pain relief if the tissue is cracking to heal and use as a > > preventative for > > future cracking but I would consult your physician first and foremost. > > Hope > > I've helped. > > > > Best Regards, > > > > Joe Bonomolo, Gwendelyn, Chloe 4 y.o., Jo-Jo(2 1/2 y.o. charger) > > & > > 1y.o. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 Hi Ellen, Nice to meet you. I am in West Virginia, but teaching in Virginia in the US. --- ellen howe wrote: --------------------------------- welcome im just thinking we should put that our kids site as a link on the charge serve its looks good i had a quick look where are you from im 20 with charge ddint get diagnosed till three months and i knwo there are people who didnt get diagnosed till later bonnie corect me if im wrong but patty didnt get diagnosed till 14 and there are others with same lengths of time think patty may be the longest oneim not sure though but i have ears cleft palate tummy probs and other stuff im from aus to hugs ellen On 16/12/05, joedelynchloejo@... wrote: > > , > > We only use tissues with lotion because our son(Charger)Jo-Jo has the same > non stop flow action 24/7. We also use a suction machine but in your case > it > seems that would be unnecessary right now. You may want to apply neosporin > with pain relief if the tissue is cracking to heal and use as a > preventative for > future cracking but I would consult your physician first and foremost. > Hope > I've helped. > > Best Regards, > > Joe Bonomolo, Gwendelyn, Chloe 4 y.o., Jo-Jo(2 1/2 y.o. charger) > & > 1y.o. > > > [Non-text portions of this message have been removed] > > > > > 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 16, 2005 Report Share Posted December 16, 2005 Isn't it amazing how their cry can impact you so, when it is such a rarity? Enjoy your 2nd interview and try not to second guess yourself going in about Amelie, time and so on. Once accepted, then you can figure out the details. Kim > Dear All > > Great advice from you all as usual, the community nurses have brought > a stick which looks like a lolly-pop and you smear it around the > nostrils and it leaves a coating which you cant see, it may help > Amelie fingers crossed, she is sleeping all day and all night she is > very sleepy and not interested in any kind of touch or play at the > moment, I am seriously worried, maybe its because she has recession > and her breathing is labourerd this is making her feel more lethargic. > > Although she has developed a very strong grip and scratched me today > when trying to change her prongs, I have never seen her get cross > before, oh my did she let me know. > > I managed to get selected for a second interview for midwifery next > Feb! > > Thanks again > Lesley mum to le 11 Olivia 9 Fleur 2 and Amelie nearly one (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 16, 2005 Report Share Posted December 16, 2005 Lesley, hope the new nostril treatment works! Also, good luck with the midwifery interview! Congrats... 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 16, 2005 Report Share Posted December 16, 2005 good luck with that youll be a godo oen > > Lesley, hope the new nostril treatment works! > Also, good luck with the midwifery interview! Congrats... > > > > > > > > > Weir > Home: lisaweir@... > Work: lisa.weir@... > Phone: > Web: http://ca.geocities.com/weirfamilyrogers > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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