Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Les, Yay-home!!! That's pretty special that they don't feel the need to do anything more. But on non-nurse nights you'll have to get up to move and suction her still? Does she do better on her side? Hopefully she'll learn to wake herself up enough to cough and change position as time goes on. Maybe she'll show a pattern to the nurse. I wonder if any formula change would cut down on the secretions? All in all-very good news! ;-) in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 hugs to you all maria Amélie is home! Celebrating big time, no BIPAP no nothing...meeting today with all the team, they think that since the haemorrhage post op from surgery that Amelie has seen improvement with her airway. They have monitored and completed studies of sleep patterns for 2 weeks, and concluded that 80% of Amelies desats are secretion issues, she pools in her sleep and thats her biggest problem, once she is re positioned and suctioned they pick up again. We have also managed to agree on some care for bedtime, social services have agreed to 3-4 nights sleep overs, which gives us time to sleep. this will be reviewed in September. I am so releaved to be home, its so dysfunctional for all the girls when we in hospital. Tonight will be a bubble bath candles and red wine...and then tomorrow back to reality! hard work and study for imminent exams. love to you all, and kisses to any birthdays I may have missed. Les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Les- I’m so glad she’s finally coming home and doesn’t need the trach! Now, I am frustrated that you don’t have 7 nights/week of care. If she’s pooling and desating all through the night, doesn’t that mean she needs constant supervision even while sleeping? How can a parent be expected to do that 24/7?? Keep pushing it til you get more help. And enjoy the help you get in the meantime. Hugs- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Michele it is frustrating, but after a year of up all night suctioning were so grateful for the nights, it is impossible to get seven nights in the UK, unless trached, we dont have insurance etc, we have to have the NHS and what they say goes, I have complained several times, its the end of the road. We have acceppted it and can only hope the suctioning improves with age. thanks Les x > > Les- > > I'm so glad she's finally coming home and doesn't need the trach! Now, I > am > frustrated that you don't have 7 nights/week of care. If she's pooling and > desating all through the night, doesn't that mean she needs constant > supervision even while sleeping? How can a parent be expected to do that > 24/7?? Keep pushing it til you get more help. And enjoy the help you get > in the meantime. > > Hugs- > > Michele W > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 We have tried sleep systems to keep her in one position shes crazy if you try to de-mobilise her and will not put up with being messed with!! typical charge child from what I read on here...determined little girl!! The formula has my attention...do other formulas produce less secretion? The secretion issues are the worst aspect of Amélie I can cope with everything else, all we do is suction 24/7 it is worse when feeding and shes fed 16 hours 10 of those through out the night. milk intolerant so limited options! any thoughts send them my way! love Les x > > Les, > > Yay-home!!! That's pretty special that they don't feel the need to do > anything more. > But on non-nurse nights you'll have to get up to move and suction her > still? > Does she do better on her side? > Hopefully she'll learn to wake herself up enough to cough and change > position as > time goes on. > Maybe she'll show a pattern to the nurse. > I wonder if any formula change would cut down on the secretions? > > All in all-very good news! > ;-) > in Ma. > > > ************************************** See what's free at > http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Les- Well, all right then. I’ll be accepting with you :-) Perhaps you’ll find the right position to reduce any nighttime suctioning. I’ll be praying for the very best to come soon. It does seem that she’ll improve handling her secretions with age. Let’s just hope this is an area where she’ll be a quick-bloomer! Hugs- Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Amelie Chan Sent: Wednesday, June 20, 2007 9:57 AM To: CHARGE Subject: Re: Amélie is home! Michele it is frustrating, but after a year of up all night suctioning were so grateful for the nights, it is impossible to get seven nights in the UK, unless trached, we dont have insurance etc, we have to have the NHS and what they say goes, I have complained several times, its the end of the road. We have acceppted it and can only hope the suctioning improves with age. thanks Les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Putting my busy nose in someone else's conversation - but I have to testify that a blended diet made of real foods made all the difference in the world for . We use soy and rice milk as a base, blend in jarred baby foods (meats, fruits and veggies), supplement (to make more calorically dense) with toddler soy formula powder and add olive oil to the morning meal ) There is a wonderful list serve for blended diets - where you might find many enthusiastic people who found a blended diet helped their child overcome secretions, retching and in general thrive. Best to you- Yuka http://health.groups.yahoo.com/group/Blenderized-Diet/ This group is to help provided education and advice for families and professional's who have family member's or patients who received food / formula via a G-tube, J-tube, or NG-tube. This group also provide's help and support in learning how to do " Blenderized Diet " via a feeding tube. This group will be open to ONLY parents, caregivers, doctors, nurses, and RDs who are here to help. Please DON'T use or do anything you learn on this group list without first checking with your family member's primary healthcare provider. Re: Amélie is home! We have tried sleep systems to keep her in one position shes crazy if you try to de-mobilise her and will not put up with being messed with!! typical charge child from what I read on here...determined little girl!! The formula has my attention...do other formulas produce less secretion? The secretion issues are the worst aspect of Amélie I can cope with everything else, all we do is suction 24/7 it is worse when feeding and shes fed 16 hours 10 of those through out the night. milk intolerant so limited options! any thoughts send them my way! love Les x > > Les, > > Yay-home!!! That's pretty special that they don't feel the need to do > anything more. > But on non-nurse nights you'll have to get up to move and suction her > still? > Does she do better on her side? > Hopefully she'll learn to wake herself up enough to cough and change > position as > time goes on. > Maybe she'll show a pattern to the nurse. > I wonder if any formula change would cut down on the secretions? > > All in all-very good news! > ;-) > in Ma. > > > ************************************** See what's free at > http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Les, GREAT !!! Enjoy the bubble bath, that is if the girls will leave you alone LOL.. Casey ________________________________________________________________________________\ ____ The fish are biting. Get more visitors on your site using Yahoo! Search Marketing. http://searchmarketing.yahoo.com/arp/sponsoredsearch_v2.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Les, I am delighted for Amelie and for all of you. So pleased to hear she is back home. Also pleased about the night respite. Dare say one or two's good nights will make a great deal of difference in your functioning. In the meantime, hope you have enjoyed or will enjoy the bubble bath and the candles and just being together. Hugs from down south and look forward to seeing you all at the next family day (hopefully). Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Les, I am delighted for Amelie and for all of you. So pleased to hear she is back home. Also pleased about the night respite. Dare say one or two's good nights will make a great deal of difference in your functioning. In the meantime, hope you have enjoyed or will enjoy the bubble bath and the candles and just being together. Hugs from down south and look forward to seeing you all at the next family day (hopefully). Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Flo Thanks and really excited about the annual charge weekend, we are booked for the over night, which will be great to get out of the house over night, and enjoy one or two drinks !! meal and relaxation, the girls are excited and its months away!! les x > Les, > I am delighted for Amelie and for all of you. So pleased to hear she is > back home. Also pleased about the night respite. Dare say one or two's > good nights will make a great deal of difference in your functioning. > > In the meantime, hope you have enjoyed or will enjoy the bubble bath and the > candles and just being together. > > Hugs from down south and look forward to seeing you all at the next family > day (hopefully). > > Flo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Casey this made me smile, I dont think I have ever really had a peaceful bath since giving birth!! it usually starts of very calming but by the end I have three girlies sat in there, and Fleur always manages to need a poop ...timing!! god love her!! les x > Les, > > GREAT !!! Enjoy the bubble bath, that is if the girls will leave you alone > LOL.. > > Casey > > > > ________________________________________________________________________________\ ____ > The fish are biting. > Get more visitors on your site using Yahoo! Search Marketing. > http://searchmarketing.yahoo.com/arp/sponsoredsearch_v2.php > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Yuka this is very interesting and I am now on a mission, to speak to my dietician ASAP. thank you very much Les x > Putting my busy nose in someone else's conversation - but I have to testify > that a blended diet made of real foods made all the difference in the world > for . We use soy and rice milk as a base, blend in jarred baby foods > (meats, fruits and veggies), supplement (to make more calorically dense) > with toddler soy formula powder and add olive oil to the morning meal ) > > There is a wonderful list serve for blended diets - where you might find > many enthusiastic people who found a blended diet helped their child > overcome secretions, retching and in general thrive. > > Best to you- > > Yuka > > http://health.groups.yahoo.com/group/Blenderized-Diet/ > > This group is to help provided education and advice for families and > professional's who have family member's or patients who received food / > formula via a G-tube, J-tube, or NG-tube. > > This group also provide's help and support in learning how to do > " Blenderized Diet " via a feeding tube. > > This group will be open to ONLY parents, caregivers, doctors, nurses, and > RDs who are here to help. > > Please DON'T use or do anything you learn on this group list without first > checking with your family member's primary healthcare provider. > > Re: Amélie is home! > > > > > We have tried sleep systems to keep her in one position shes crazy if you > try to de-mobilise her and will not put up with being messed with!! > typical > charge child from what > I read on here...determined little girl!! > > The formula has my attention...do other formulas produce less secretion? > The secretion issues are the worst aspect of Amélie I can cope with > everything else, all we > do is suction 24/7 it is worse when feeding and shes fed 16 hours 10 of > those through out the night. > > milk intolerant so limited options! > > any thoughts send them my way! love Les x > > > > > > Les, > > > > Yay-home!!! That's pretty special that they don't feel the need to do > > anything more. > > But on non-nurse nights you'll have to get up to move and suction her > > still? > > Does she do better on her side? > > Hopefully she'll learn to wake herself up enough to cough and change > > position as > > time goes on. > > Maybe she'll show a pattern to the nurse. > > I wonder if any formula change would cut down on the secretions? > > > > All in all-very good news! > > ;-) > > in Ma. > > > > > > ************************************** See what's free at > > http://www.aol.com. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Yuka this is very interesting and I am now on a mission, to speak to my dietician ASAP. thank you very much Les x > Putting my busy nose in someone else's conversation - but I have to testify > that a blended diet made of real foods made all the difference in the world > for . We use soy and rice milk as a base, blend in jarred baby foods > (meats, fruits and veggies), supplement (to make more calorically dense) > with toddler soy formula powder and add olive oil to the morning meal ) > > There is a wonderful list serve for blended diets - where you might find > many enthusiastic people who found a blended diet helped their child > overcome secretions, retching and in general thrive. > > Best to you- > > Yuka > > http://health.groups.yahoo.com/group/Blenderized-Diet/ > > This group is to help provided education and advice for families and > professional's who have family member's or patients who received food / > formula via a G-tube, J-tube, or NG-tube. > > This group also provide's help and support in learning how to do > " Blenderized Diet " via a feeding tube. > > This group will be open to ONLY parents, caregivers, doctors, nurses, and > RDs who are here to help. > > Please DON'T use or do anything you learn on this group list without first > checking with your family member's primary healthcare provider. > > Re: Amélie is home! > > > > > We have tried sleep systems to keep her in one position shes crazy if you > try to de-mobilise her and will not put up with being messed with!! > typical > charge child from what > I read on here...determined little girl!! > > The formula has my attention...do other formulas produce less secretion? > The secretion issues are the worst aspect of Amélie I can cope with > everything else, all we > do is suction 24/7 it is worse when feeding and shes fed 16 hours 10 of > those through out the night. > > milk intolerant so limited options! > > any thoughts send them my way! love Les x > > > > > > Les, > > > > Yay-home!!! That's pretty special that they don't feel the need to do > > anything more. > > But on non-nurse nights you'll have to get up to move and suction her > > still? > > Does she do better on her side? > > Hopefully she'll learn to wake herself up enough to cough and change > > position as > > time goes on. > > Maybe she'll show a pattern to the nurse. > > I wonder if any formula change would cut down on the secretions? > > > > All in all-very good news! > > ;-) > > in Ma. > > > > > > ************************************** See what's free at > > http://www.aol.com. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Yikes girl, you are fast! I am still umming and urring about whether we come or not but know we will cos I need and want to see all the people I have got used to meeting and chatting with. Last year Simon came on his own cos I couldn't bear the distance with a grumpy Jess and a travel sick Elly. I would really like to come this time. If we book now, we will have to come so better get onto it and just get the girlies drugged up so they deal with their issues and just let me enjoy myself! Am I selling myself out of the CHARGE parent extraordinaire award? Have a lovely peaceful night on night one of night care. Qiuck, get on with it! It is nearly 11pm! Make the most of the care and look forward to hearing what it is like to sleep well. I have forgotten. ZZZZZZZZZZZZZ Flo > > Flo > > Thanks and really excited about the annual charge weekend, we are > booked for the over night, which will be great to get out of the house > over night, and enjoy one or two drinks !! meal and relaxation, the > girls are excited and its months away!! > > les x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Les- Have you read the children’s book “Five Minutes Peace”?? Find it. It’s your story. Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Amelie Chan Sent: Wednesday, June 20, 2007 4:48 PM To: CHARGE Subject: Re: Amélie is home! Casey this made me smile, I dont think I have ever really had a peaceful bath since giving birth!! it usually starts of very calming but by the end I have three girlies sat in there, and Fleur always manages to need a poop ...timing!! god love her!! les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 Les, so glad that Amelie is home and that you are finally getting some overnight nursing care! , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 I am so happy she is home!! Hugs, crystal and Eva > > Les, so glad that Amelie is home and that you are finally getting some overnight nursing care! > > , mom to (5) > http://kauffmanlak.blogspot.com/ > > --------------------------------- > Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.