Re: nat charge related ....just a tender moment

[Guest guest]

repeat nissen and jstoma is wat id do

>

> Hi Ellen

>

> We are awaiting either the disassociation or repeat Nissen Fundoplication,

> any day now waiting for news of multidisciplinary meeting with all her

> teams ie: respiratory, surgical surgeon, feeding, ICU consultant, paed

> consultant and speech and language, once everyone is together i hope a

> decision can be made which is best for Amelie, we are leaning towards a

> repeat nissen.

>

> love and hugs to you

> Les x Amelie x

>

>

>

> >

> > wat is the next surgery lesly

> >

> >

> > >

> > > I cant wait either flo for the next UK get to gether, i am hoping

> > > Amelie is stronger and her next surgery is long out of the way, and it

> > > will also be nice to catch up with you and some of the other families,

> > >

> > > Les x

> > >

> > >

> > > > Lesley,

> > > > Just catching up on my posts, I am sooo behind! I have to say that

> > the

> > > > photo of you and Amelie is just so beautiful it has to be

> > treasured. It

> > > > really reminded me of the " not so good looking but very significant "

> > > photos

> > > > of when she was in NICU. They are alwayd the ones that make

> > my

> > > eyes

> > > > water. That photo of you and Amelie surely brought tears to my

> > eyes. I

> > > > can't wait to see her and you again. Roll on Sept!!!

> > > >

> > > > Flo

> > > >

> > > >

> > > >

[Guest guest]

repeat nissen and jstoma is wat id do

>

> Hi Ellen

>

> We are awaiting either the disassociation or repeat Nissen Fundoplication,

> any day now waiting for news of multidisciplinary meeting with all her

> teams ie: respiratory, surgical surgeon, feeding, ICU consultant, paed

> consultant and speech and language, once everyone is together i hope a

> decision can be made which is best for Amelie, we are leaning towards a

> repeat nissen.

>

> love and hugs to you

> Les x Amelie x

>

>

>

> >

> > wat is the next surgery lesly

> >

> >

> > >

> > > I cant wait either flo for the next UK get to gether, i am hoping

> > > Amelie is stronger and her next surgery is long out of the way, and it

> > > will also be nice to catch up with you and some of the other families,

> > >

> > > Les x

> > >

> > >

> > > > Lesley,

> > > > Just catching up on my posts, I am sooo behind! I have to say that

> > the

> > > > photo of you and Amelie is just so beautiful it has to be

> > treasured. It

> > > > really reminded me of the " not so good looking but very significant "

> > > photos

> > > > of when she was in NICU. They are alwayd the ones that make

> > my

> > > eyes

> > > > water. That photo of you and Amelie surely brought tears to my

> > eyes. I

> > > > can't wait to see her and you again. Roll on Sept!!!

> > > >

> > > > Flo

> > > >

> > > >

> > > >

[Guest guest]

Ellen

Not sure what a jstoma is ?

do you mean feeding into the jejunum, which we are doing at the

moment, amelies tube goes in through her gastrostomy and is fed via

an xray barium along and into the jejunum, but Amelies team have

made it clear that this is a temporary action to help reflux, and

have said she cant keep being fed there always, i presume once

surgery is done, we will go back to the gastrostomy feeding with a

small mickey button!!

hugs Lesley

> > > > > Lesley,

> > > > > Just catching up on my posts, I am sooo behind! I have to

say that

> > > the

> > > > > photo of you and Amelie is just so beautiful it has to be

> > > treasured. It

> > > > > really reminded me of the " not so good looking but very

significant "

> > > > photos

> > > > > of when she was in NICU. They are alwayd the ones

that make

> > > my

> > > > eyes

> > > > > water. That photo of you and Amelie surely brought tears

to my

> > > eyes. I

> > > > > can't wait to see her and you again. Roll on Sept!!!

> > > > >

> > > > > Flo

> > > > >

> > > > >

> > > > >

[Guest guest]

yeah but doing it with out the gastrostomy liek i ddi just tube straight in

and if you need to gastrostomy can be used for drainage thats what weve done

>

> Ellen

>

> Not sure what a jstoma is ?

>

> do you mean feeding into the jejunum, which we are doing at the

> moment, amelies tube goes in through her gastrostomy and is fed via

> an xray barium along and into the jejunum, but Amelies team have

> made it clear that this is a temporary action to help reflux, and

> have said she cant keep being fed there always, i presume once

> surgery is done, we will go back to the gastrostomy feeding with a

> small mickey button!!

>

> hugs Lesley

>

>

>

>

>

>

> > > > > > Lesley,

> > > > > > Just catching up on my posts, I am sooo behind! I have to

> say that

> > > > the

> > > > > > photo of you and Amelie is just so beautiful it has to be

> > > > treasured. It

> > > > > > really reminded me of the " not so good looking but very

> significant "

> > > > > photos

> > > > > > of when she was in NICU. They are alwayd the ones

> that make

> > > > my

> > > > > eyes

> > > > > > water. That photo of you and Amelie surely brought tears

> to my

> > > > eyes. I

> > > > > > can't wait to see her and you again. Roll on Sept!!!

> > > > > >

> > > > > > Flo

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

thanks for this advice Ellen, i really hope we hear soon from

everyone, although she is doing really well considering,

we are working hard with chest physio to keep te green stuff at bay, i

have never seen so much production from one little baby,

this is her main problem during the night, she desats massively

because she is asleep and so still, then when we deep suction her

theres huge amounts of green thick mucous, its no wonder she desats, i

have also noticed she stops breathing its definitely a positional

thing, she snores so loudly and then nothing silence and the alarm

starts going mad, i have noticed her tongue has rolled to the back of

her airway and is blocking her off, once you gee her up and put her

back on her side hers sats shoot back up......shes a little

minx.......always got us on our toes!!

hugs to you love les xx

> yeah but doing it with out the gastrostomy liek i ddi just tube straight in

> and if you need to gastrostomy can be used for drainage thats what weve done

>

>

> >

> > Ellen

> >

> > Not sure what a jstoma is ?

> >

> > do you mean feeding into the jejunum, which we are doing at the

> > moment, amelies tube goes in through her gastrostomy and is fed via

> > an xray barium along and into the jejunum, but Amelies team have

> > made it clear that this is a temporary action to help reflux, and

> > have said she cant keep being fed there always, i presume once

> > surgery is done, we will go back to the gastrostomy feeding with a

> > small mickey button!!

> >

> > hugs Lesley

> >

> >

> >

> >

> >

> >

> > > > > > > Lesley,

> > > > > > > Just catching up on my posts, I am sooo behind! I have to

> > say that

> > > > > the

> > > > > > > photo of you and Amelie is just so beautiful it has to be

> > > > > treasured. It

> > > > > > > really reminded me of the " not so good looking but very

> > significant "

> > > > > > photos

> > > > > > > of when she was in NICU. They are alwayd the ones

> > that make

> > > > > my

> > > > > > eyes

> > > > > > > water. That photo of you and Amelie surely brought tears

> > to my

> > > > > eyes. I

> > > > > > > can't wait to see her and you again. Roll on Sept!!!

> > > > > > >

> > > > > > > Flo

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

i used to have mucus it wasnt fun still do get it and i just sit up and im

good

>

> thanks for this advice Ellen, i really hope we hear soon from

> everyone, although she is doing really well considering,

> we are working hard with chest physio to keep te green stuff at bay, i

> have never seen so much production from one little baby,

> this is her main problem during the night, she desats massively

> because she is asleep and so still, then when we deep suction her

> theres huge amounts of green thick mucous, its no wonder she desats, i

> have also noticed she stops breathing its definitely a positional

> thing, she snores so loudly and then nothing silence and the alarm

> starts going mad, i have noticed her tongue has rolled to the back of

> her airway and is blocking her off, once you gee her up and put her

> back on her side hers sats shoot back up......shes a little

> minx.......always got us on our toes!!

>

> hugs to you love les xx

>

>

> > yeah but doing it with out the gastrostomy liek i ddi just tube straight

> in

> > and if you need to gastrostomy can be used for drainage thats what weve

> done

> >

> >

> > >

> > > Ellen

> > >

> > > Not sure what a jstoma is ?

> > >

> > > do you mean feeding into the jejunum, which we are doing at the

> > > moment, amelies tube goes in through her gastrostomy and is fed via

> > > an xray barium along and into the jejunum, but Amelies team have

> > > made it clear that this is a temporary action to help reflux, and

> > > have said she cant keep being fed there always, i presume once

> > > surgery is done, we will go back to the gastrostomy feeding with a

> > > small mickey button!!

> > >

> > > hugs Lesley

> > >

> > >

> > >

> > >

> > >

> > >

> > > > > > > > Lesley,

> > > > > > > > Just catching up on my posts, I am sooo behind! I have to

> > > say that

> > > > > > the

> > > > > > > > photo of you and Amelie is just so beautiful it has to be

> > > > > > treasured. It

> > > > > > > > really reminded me of the " not so good looking but very

> > > significant "

> > > > > > > photos

> > > > > > > > of when she was in NICU. They are alwayd the ones

> > > that make

> > > > > > my

> > > > > > > eyes

> > > > > > > > water. That photo of you and Amelie surely brought tears

> > > to my

> > > > > > eyes. I

> > > > > > > > can't wait to see her and you again. Roll on Sept!!!

> > > > > > > >

> > > > > > > > Flo

> > > > > > > >

> > > > > > > >

> > > > > > > >