Re: Re: Amélie Bipap or Trach ...help PLEASE

[Guest guest]

Thanks , this is very reassuring too, I think it souns like the better

option.

Amélie is going in Tuesday night for yet another sleep study, so the meeting

will be Wednesday morning,

when we should know more.

Les x

>

> Hi,

>

> We were faced with the decision whether or not to trach our daughter ,

> Abby,

> 12 years ago.

>

> At 10 months of age, Abby had been hospitalized for pneumonia and

> pseudomonas once again and we were told that our last option was to try

> the BiPap and

> if that didn't work then she would have to be trached. At that time Abby

> was

> the youngest patient at s Hopkins Children's Center to use a BiPap and

>

> they were not sure it would work for her. Now they use the BiPap for even

> younger babies.

>

> When she was born, Abby had a TEF, floppy airway, bilateral choanal

> atresia,

> had to be suctioned constantly, could not swallow, etc. When she was a

> baby, Abby would also have a blue cast at times when she would get mucous

> plugs,

> her stats would drop, etc.. I had to do nebulizer treatments several times

>

> a day, chest and back pt, a lot of deep suctioning which I hated to do but

> it

> eased Abby's breathing.

>

> The day we started using the BiPap was the day life for Abby and all of us

>

> become so much better. She could finally sleep soundly at night (no

> suctioning, no coughing or gagging, etc.) and this made such a difference

> for her

> health and her cognitive growth.

>

> The Bi Pap has been a miracle for Abby. She has worn the BiPap every night

>

> since she was 10 months old. She has never been hospitalized again for

> pneumonia even though she cannot swallow and still has copious secretions.

> She

> has learned to manage them better. When she is sick with a cold, she is

> the

> first one that wants her mask on and then takes a nap. Abby is a really

> healthy kid now and I attribute that to using the machine every night. I

> can't

> remember the last time she had an antibiotic and she is able to fight off

> colds

> on her own without it going into other type respiratory illnesses.

>

> The BiPap itself has changed so much since Abby was little. It is such a

> compact little box (as small as a child's shoe box) that weighs

> practically

> nothing compared to the heavier larger machine we use to have next to her

> bed.

> Even the head gear is so different than before. Abby now uses the mask and

> a

> little head strap rather than the bonnet. There is also a computer program

>

> that is installed in the new BiPaps which can monitor different things.

> You

> can take the computer card to Pulmonary visits and they can read the

> computer card to extract a lot of respiratory information. I am hoping

> that with

> her new machine Abby's Pulmonary Doctor will be able to receive enough

> information that we will no longer have to do periodic (every few years)

> overnight

> Sleep Studies. Her BiPap goes with us whenever we travel to include

> camping.

>

> I know everyone has to make their own decisions about what is best for

> their

> own child. For us the BiPAP was a miracle for Abby. She is growing leaps

> and bounds and is now up to 80 pounds and is starting to enter puberty.

>

> I wish you all the best in making this type decision. I know it is a

> difficult one.

>

> Appell

> Mom to (soon to be 19 yrs old), Abby (13 yrs old) and wife to Bruce

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

and then u should update us all coz u no me I WILL WANT TO NO LOL

>

> Thanks , this is very reassuring too, I think it souns like the

> better

> option.

> Amélie is going in Tuesday night for yet another sleep study, so the

> meeting

> will be Wednesday morning,

> when we should know more.

> Les x

>

> On 01/06/07, Hillmanbs@...

Hillmanbs@...>

> wrote:

> >

> > Hi,

> >

> > We were faced with the decision whether or not to trach our daughter ,

> > Abby,

> > 12 years ago.

> >

> > At 10 months of age, Abby had been hospitalized for pneumonia and

> > pseudomonas once again and we were told that our last option was to try

> > the BiPap and

> > if that didn't work then she would have to be trached. At that time Abby

> > was

> > the youngest patient at s Hopkins Children's Center to use a BiPap

> and

> >

> > they were not sure it would work for her. Now they use the BiPap for

> even

> > younger babies.

> >

> > When she was born, Abby had a TEF, floppy airway, bilateral choanal

> > atresia,

> > had to be suctioned constantly, could not swallow, etc. When she was a

> > baby, Abby would also have a blue cast at times when she would get

> mucous

> > plugs,

> > her stats would drop, etc.. I had to do nebulizer treatments several

> times

> >

> > a day, chest and back pt, a lot of deep suctioning which I hated to do

> but

> > it

> > eased Abby's breathing.

> >

> > The day we started using the BiPap was the day life for Abby and all of

> us

> >

> > become so much better. She could finally sleep soundly at night (no

> > suctioning, no coughing or gagging, etc.) and this made such a

> difference

> > for her

> > health and her cognitive growth.

> >

> > The Bi Pap has been a miracle for Abby. She has worn the BiPap every

> night

> >

> > since she was 10 months old. She has never been hospitalized again for

> > pneumonia even though she cannot swallow and still has copious

> secretions.

> > She

> > has learned to manage them better. When she is sick with a cold, she is

> > the

> > first one that wants her mask on and then takes a nap. Abby is a really

> > healthy kid now and I attribute that to using the machine every night. I

> > can't

> > remember the last time she had an antibiotic and she is able to fight

> off

> > colds

> > on her own without it going into other type respiratory illnesses.

> >

> > The BiPap itself has changed so much since Abby was little. It is such a

> > compact little box (as small as a child's shoe box) that weighs

> > practically

> > nothing compared to the heavier larger machine we use to have next to

> her

> > bed.

> > Even the head gear is so different than before. Abby now uses the mask

> and

> > a

> > little head strap rather than the bonnet. There is also a computer

> program

> >

> > that is installed in the new BiPaps which can monitor different things.

> > You

> > can take the computer card to Pulmonary visits and they can read the

> > computer card to extract a lot of respiratory information. I am hoping

> > that with

> > her new machine Abby's Pulmonary Doctor will be able to receive enough

> > information that we will no longer have to do periodic (every few years)

> > overnight

> > Sleep Studies. Her BiPap goes with us whenever we travel to include

> > camping.

> >

> > I know everyone has to make their own decisions about what is best for

> > their

> > own child. For us the BiPAP was a miracle for Abby. She is growing leaps

> > and bounds and is now up to 80 pounds and is starting to enter puberty.

> >

> > I wish you all the best in making this type decision. I know it is a

> > difficult one.

> >

> > Appell

> > Mom to (soon to be 19 yrs old), Abby (13 yrs old) and wife to

> Bruce

> >

> > ************************************** See what's free at

> > http://www.aol.com.

> >

> >

[Guest guest]

Bless you Ellen, you care so much about everyone, hope your taking care of

you too!

love les x

>

> and then u should update us all coz u no me I WILL WANT TO NO LOL

>

> On 03/06/07, Amelie Chan

amelie.m.chan@...>

> wrote:

> >

> > Thanks , this is very reassuring too, I think it souns like the

> > better

> > option.

> > Amélie is going in Tuesday night for yet another sleep study, so the

> > meeting

> > will be Wednesday morning,

> > when we should know more.

> > Les x

> >

> > On 01/06/07, Hillmanbs@... <

> Hillmanbs@... >

> > wrote:

> > >

> > > Hi,

> > >

> > > We were faced with the decision whether or not to trach our daughter ,

> > > Abby,

> > > 12 years ago.

> > >

> > > At 10 months of age, Abby had been hospitalized for pneumonia and

> > > pseudomonas once again and we were told that our last option was to

> try

> > > the BiPap and

> > > if that didn't work then she would have to be trached. At that time

> Abby

> > > was

> > > the youngest patient at s Hopkins Children's Center to use a BiPap

> > and

> > >

> > > they were not sure it would work for her. Now they use the BiPap for

> > even

> > > younger babies.

> > >

> > > When she was born, Abby had a TEF, floppy airway, bilateral choanal

> > > atresia,

> > > had to be suctioned constantly, could not swallow, etc. When she was a

> > > baby, Abby would also have a blue cast at times when she would get

> > mucous

> > > plugs,

> > > her stats would drop, etc.. I had to do nebulizer treatments several

> > times

> > >

> > > a day, chest and back pt, a lot of deep suctioning which I hated to do

> > but

> > > it

> > > eased Abby's breathing.

> > >

> > > The day we started using the BiPap was the day life for Abby and all

> of

> > us

> > >

> > > become so much better. She could finally sleep soundly at night (no

> > > suctioning, no coughing or gagging, etc.) and this made such a

> > difference

> > > for her

> > > health and her cognitive growth.

> > >

> > > The Bi Pap has been a miracle for Abby. She has worn the BiPap every

> > night

> > >

> > > since she was 10 months old. She has never been hospitalized again for

> > > pneumonia even though she cannot swallow and still has copious

> > secretions.

> > > She

> > > has learned to manage them better. When she is sick with a cold, she

> is

> > > the

> > > first one that wants her mask on and then takes a nap. Abby is a

> really

> > > healthy kid now and I attribute that to using the machine every night.

> I

> > > can't

> > > remember the last time she had an antibiotic and she is able to fight

> > off

> > > colds

> > > on her own without it going into other type respiratory illnesses.

> > >

> > > The BiPap itself has changed so much since Abby was little. It is such

> a

> > > compact little box (as small as a child's shoe box) that weighs

> > > practically

> > > nothing compared to the heavier larger machine we use to have next to

> > her

> > > bed.

> > > Even the head gear is so different than before. Abby now uses the mask

> > and

> > > a

> > > little head strap rather than the bonnet. There is also a computer

> > program

> > >

> > > that is installed in the new BiPaps which can monitor different

> things.

> > > You

> > > can take the computer card to Pulmonary visits and they can read the

> > > computer card to extract a lot of respiratory information. I am hoping

> > > that with

> > > her new machine Abby's Pulmonary Doctor will be able to receive enough

> > > information that we will no longer have to do periodic (every few

> years)

> > > overnight

> > > Sleep Studies. Her BiPap goes with us whenever we travel to include

> > > camping.

> > >

> > > I know everyone has to make their own decisions about what is best for

> > > their

> > > own child. For us the BiPAP was a miracle for Abby. She is growing

> leaps

> > > and bounds and is now up to 80 pounds and is starting to enter

> puberty.

> > >

> > > I wish you all the best in making this type decision. I know it is a

> > > difficult one.

> > >

> > > Appell

> > > Mom to (soon to be 19 yrs old), Abby (13 yrs old) and wife to

> > Bruce

> > >

> > > ************************************** See what's free at

> > > http://www.aol.com.

> > >

> > >

[Guest guest]

i am doign ok have had a chest infection since bout three weeks on stuff to

make it better

>

> Bless you Ellen, you care so much about everyone, hope your taking care

> of

> you too!

> love les x

>

> On 03/06/07, ellen howe ellen.howe@... >

> wrote:

> >

> > and then u should update us all coz u no me I WILL WANT TO NO LOL

> >

> > On 03/06/07, Amelie Chan

amelie.m.chan@...

> >

> > wrote:

> > >

> > > Thanks , this is very reassuring too, I think it souns like the

> > > better

> > > option.

> > > Amélie is going in Tuesday night for yet another sleep study, so the

> > > meeting

> > > will be Wednesday morning,

> > > when we should know more.

> > > Les x

> > >

> > > On 01/06/07, Hillmanbs@...

40aol.com> <

> > Hillmanbs@...

40aol.com>>

> > > wrote:

> > > >

> > > > Hi,

> > > >

> > > > We were faced with the decision whether or not to trach our daughter

> ,

> > > > Abby,

> > > > 12 years ago.

> > > >

> > > > At 10 months of age, Abby had been hospitalized for pneumonia and

> > > > pseudomonas once again and we were told that our last option was to

> > try

> > > > the BiPap and

> > > > if that didn't work then she would have to be trached. At that time

> > Abby

> > > > was

> > > > the youngest patient at s Hopkins Children's Center to use a

> BiPap

> > > and

> > > >

> > > > they were not sure it would work for her. Now they use the BiPap for

> > > even

> > > > younger babies.

> > > >

> > > > When she was born, Abby had a TEF, floppy airway, bilateral choanal

> > > > atresia,

> > > > had to be suctioned constantly, could not swallow, etc. When she was

> a

> > > > baby, Abby would also have a blue cast at times when she would get

> > > mucous

> > > > plugs,

> > > > her stats would drop, etc.. I had to do nebulizer treatments several

> > > times

> > > >

> > > > a day, chest and back pt, a lot of deep suctioning which I hated to

> do

> > > but

> > > > it

> > > > eased Abby's breathing.

> > > >

> > > > The day we started using the BiPap was the day life for Abby and all

> > of

> > > us

> > > >

> > > > become so much better. She could finally sleep soundly at night (no

> > > > suctioning, no coughing or gagging, etc.) and this made such a

> > > difference

> > > > for her

> > > > health and her cognitive growth.

> > > >

> > > > The Bi Pap has been a miracle for Abby. She has worn the BiPap every

> > > night

> > > >

> > > > since she was 10 months old. She has never been hospitalized again

> for

> > > > pneumonia even though she cannot swallow and still has copious

> > > secretions.

> > > > She

> > > > has learned to manage them better. When she is sick with a cold, she

> > is

> > > > the

> > > > first one that wants her mask on and then takes a nap. Abby is a

> > really

> > > > healthy kid now and I attribute that to using the machine every

> night.

> > I

> > > > can't

> > > > remember the last time she had an antibiotic and she is able to

> fight

> > > off

> > > > colds

> > > > on her own without it going into other type respiratory illnesses.

> > > >

> > > > The BiPap itself has changed so much since Abby was little. It is

> such

> > a

> > > > compact little box (as small as a child's shoe box) that weighs

> > > > practically

> > > > nothing compared to the heavier larger machine we use to have next

> to

> > > her

> > > > bed.

> > > > Even the head gear is so different than before. Abby now uses the

> mask

> > > and

> > > > a

> > > > little head strap rather than the bonnet. There is also a computer

> > > program

> > > >

> > > > that is installed in the new BiPaps which can monitor different

> > things.

> > > > You

> > > > can take the computer card to Pulmonary visits and they can read the

> > > > computer card to extract a lot of respiratory information. I am

> hoping

> > > > that with

> > > > her new machine Abby's Pulmonary Doctor will be able to receive

> enough

> > > > information that we will no longer have to do periodic (every few

> > years)

> > > > overnight

> > > > Sleep Studies. Her BiPap goes with us whenever we travel to include

> > > > camping.

> > > >

> > > > I know everyone has to make their own decisions about what is best

> for

> > > > their

> > > > own child. For us the BiPAP was a miracle for Abby. She is growing

> > leaps

> > > > and bounds and is now up to 80 pounds and is starting to enter

> > puberty.

> > > >

> > > > I wish you all the best in making this type decision. I know it is a

> > > > difficult one.

> > > >

> > > > Appell

> > > > Mom to (soon to be 19 yrs old), Abby (13 yrs old) and wife to

> > > Bruce

> > > >

> > > > ************************************** See what's free at

> > > > http://www.aol.com.

> > > >

> > > >