Re: took zach in today more to think about

[Guest guest]

There is a machine called the cough assist machine. I t helps get the gunk out of the lungs by helping the kids cough. Our little girl Max, 5, loves it. It is non-invasive and it really helps doing it a number of times a day.

I am glad you guys saw the doc. Hang in there. Wait til you see the pulmo and see if he wants to do bronchial scope. Good idea to get that appointment moved up.

Hang in there

best regards

rosy

[Guest guest]

Hi -

My name is , I am relatively new to this

group... I was just wondering if you live in the

Albany,NY area. I grew up just outside of Albany, and

my family is still there. Both of my parents worked

at Albany Medical Center, so they know many people

there. I live outside of Boston. I was just

curious...

--- sarah wrote:

>

>

> Our pediatrician is calling our state health person

> and requesting that zach be home serviced. Due to

> his health issues. Zachs lymph nodes are all

> enlarged and he says thats typical for kids w/

> chronic infections. He can hear the junkiness as he

> says in his lungs. The thought of aspiration is

> still there. He was wondering about thinning his

> secretions, yet they think that he has reflux which

> i think would make his reflux worse. I had to

> thicken everything. so he says its like a catch 22.

> The pediatrician wants to do a sweat test to test

> for cystic fibrosis and cilizemy immotility . Zachs

> had 5 pneumonias since august. Just doesnt think

> that zach can cough up the stuff strong enough when

> he gets the slightest colds that he just can't

> handle his own secretions for that not to turn into

> pneumonia. The dr. thinks it would be rare for zach

> to have c.f yet, we just looked at each other and

> said well zachs a sorta rare type of kid cause of

> the ga2 and symptoms that no one can figure out.

> He says that the pulmonologist in albany will

> probably ask to do a bronchioscope. That is under

> sedation which i am not keen on. He says they're all

> trained for any type of emergency in pediatrics w/

> cynotic episodes and other situations. i just hope

> they know what they're doing . It still doesnt make

> you not worry. I gotta try and get his apt moved up

> while he has the rattling/pneumonia so they can see

> how he is.

>

> Anyway thats what happened.

>

> Hey stacey, i missplaced ur phone number if u have

> mine give me a call so i can keep it on my id

>

> sarah mom to zach 4 ga2 and other more prominent

> health issues.

>

> alexis 6

>

>

> __________________________________________________

>

[Guest guest]

hey there, yes i live up off exit 16 on the northway I-87. actually going to albany this week . he sees dr. klavosky. He is having a c.f test on the 11th. sees klavosky the pulmonologist on the 20kristin murray wrote:

Hi -My name is , I am relatively new to thisgroup... I was just wondering if you live in theAlbany,NY area. I grew up just outside of Albany, andmy family is still there. Both of my parents workedat Albany Medical Center, so they know many peoplethere. I live outside of Boston. I was justcurious...--- sarah wrote:> > > Our pediatrician is calling our state health person> and requesting that zach be home serviced. Due to> his health issues. Zachs lymph nodes are all> enlarged and he says thats typical for kids w/> chronic infections. He can hear the junkiness as he> says in his lungs. The thought of aspiration is> still there. He was wondering about thinning his> secretions, yet they think that he has reflux

which> i think would make his reflux worse. I had to> thicken everything. so he says its like a catch 22.> The pediatrician wants to do a sweat test to test> for cystic fibrosis and cilizemy immotility . Zachs> had 5 pneumonias since august. Just doesnt think> that zach can cough up the stuff strong enough when> he gets the slightest colds that he just can't> handle his own secretions for that not to turn into> pneumonia. The dr. thinks it would be rare for zach> to have c.f yet, we just looked at each other and> said well zachs a sorta rare type of kid cause of> the ga2 and symptoms that no one can figure out.> He says that the pulmonologist in albany will> probably ask to do a bronchioscope. That is under> sedation which i am not keen on. He says they're all> trained for any type of emergency in pediatrics w/> cynotic episodes and other situations. i

just hope> they know what they're doing . It still doesnt make> you not worry. I gotta try and get his apt moved up> while he has the rattling/pneumonia so they can see> how he is. > > Anyway thats what happened. > > Hey stacey, i missplaced ur phone number if u have> mine give me a call so i can keep it on my id > > sarah mom to zach 4 ga2 and other more prominent> health issues. > > alexis 6 > > > __________________________________________________>

[Guest guest]

Is he having a sweat test for c.f.? My son had that

as well here in Boston.

--- sarah wrote:

> hey there, yes i live up off exit 16 on the northway

> I-87. actually going to albany this week . he sees

> dr. klavosky. He is having a c.f test on the 11th.

> sees klavosky the pulmonologist on the 20

>

> kristin murray wrote:Hi

> -

> My name is , I am relatively new to this

> group... I was just wondering if you live in the

> Albany,NY area. I grew up just outside of Albany,

> and

> my family is still there. Both of my parents worked

> at Albany Medical Center, so they know many people

> there. I live outside of Boston. I was just

> curious...

> --- sarah wrote:

>

> >

> >

> > Our pediatrician is calling our state health

> person

> > and requesting that zach be home serviced. Due to

> > his health issues. Zachs lymph nodes are all

> > enlarged and he says thats typical for kids w/

> > chronic infections. He can hear the junkiness as

> he

> > says in his lungs. The thought of aspiration is

> > still there. He was wondering about thinning his

> > secretions, yet they think that he has reflux

> which

> > i think would make his reflux worse. I had to

> > thicken everything. so he says its like a catch

> 22.

> > The pediatrician wants to do a sweat test to test

> > for cystic fibrosis and cilizemy immotility .

> Zachs

> > had 5 pneumonias since august. Just doesnt think

> > that zach can cough up the stuff strong enough

> when

> > he gets the slightest colds that he just can't

> > handle his own secretions for that not to turn

> into

> > pneumonia. The dr. thinks it would be rare for

> zach

> > to have c.f yet, we just looked at each other and

> > said well zachs a sorta rare type of kid cause of

> > the ga2 and symptoms that no one can figure out.

> > He says that the pulmonologist in albany will

> > probably ask to do a bronchioscope. That is under

> > sedation which i am not keen on. He says they're

> all

> > trained for any type of emergency in pediatrics w/

> > cynotic episodes and other situations. i just hope

> > they know what they're doing . It still doesnt

> make

> > you not worry. I gotta try and get his apt moved

> up

> > while he has the rattling/pneumonia so they can

> see

> > how he is.

> >

> > Anyway thats what happened.

> >

> > Hey stacey, i missplaced ur phone number if u have

> > mine give me a call so i can keep it on my id

> >

> > sarah mom to zach 4 ga2 and other more prominent

> > health issues.

> >

> > alexis 6

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi ,

We deal with alot of the same issues that you are

dealing with especially with secretions and not

coughing and all. Have you thought of a cough assist?

We do not have to use one only because we ended up

needing a trach and suction out secretions now. We

also use oxygen and things for when their sats drop

and especially when crying or even laughing for our

daughter. She drops into the 50 s when crying or

laughing and its really scary but we just deal with

it. Cant stop living right? besides she things

everythings funny so its tough to have her not laugh.

I wouldnt rule out anything on kids like ours..

they always throw you curve balls. Our daughters curve

ball is a fistula between her trachea and esophagus..

that should have been caught forever ago but wasnt. On

top of everything else... who would have thought this

right? So hold tight and know things will work out. If

you are looking into home services they must provide

them for you through your local special education

dept. We are actually fighting the opposite as they

dont want to deal with our kids in schoola nd want

home services. So its backwards.

Kimberley

--- sarah wrote:

>

>

> Our pediatrician is calling our state health person

> and requesting that zach be home serviced. Due to

> his health issues. Zachs lymph nodes are all

> enlarged and he says thats typical for kids w/

> chronic infections. He can hear the junkiness as he

> says in his lungs. The thought of aspiration is

> still there. He was wondering about thinning his

> secretions, yet they think that he has reflux which

> i think would make his reflux worse. I had to

> thicken everything. so he says its like a catch 22.

> The pediatrician wants to do a sweat test to test

> for cystic fibrosis and cilizemy immotility . Zachs

> had 5 pneumonias since august. Just doesnt think

> that zach can cough up the stuff strong enough when

> he gets the slightest colds that he just can't

> handle his own secretions for that not to turn into

> pneumonia. The dr. thinks it would be rare for zach

> to have c.f yet, we just looked at each other and

> said well zachs a sorta rare type of kid cause of

> the ga2 and symptoms that no one can figure out.

> He says that the pulmonologist in albany will

> probably ask to do a bronchioscope. That is under

> sedation which i am not keen on. He says they're all

> trained for any type of emergency in pediatrics w/

> cynotic episodes and other situations. i just hope

> they know what they're doing . It still doesnt make

> you not worry. I gotta try and get his apt moved up

> while he has the rattling/pneumonia so they can see

> how he is.

>

> Anyway thats what happened.

>

> Hey stacey, i missplaced ur phone number if u have

> mine give me a call so i can keep it on my id

>

> sarah mom to zach 4 ga2 and other more prominent

> health issues.

>

> alexis 6

>

>

> __________________________________________________

>

[Guest guest]

yes they are doing that test. thats the 11th.

kristin murray wrote:

Is he having a sweat test for c.f.? My son had thatas well here in Boston.--- sarah wrote:> hey there, yes i live up off exit 16 on the northway> I-87. actually going to albany this week . he sees> dr. klavosky. He is having a c.f test on the 11th.> sees klavosky the pulmonologist on the 20> > kristin murray wrote:Hi> -> My name is , I am relatively new to this> group... I was just wondering if you live in the> Albany,NY area. I grew up just outside of Albany,> and> my family is still there. Both of my parents worked> at Albany Medical Center, so they know many people> there. I live outside of Boston. I was just> curious...> --- sarah wrote:> > > > >

> > Our pediatrician is calling our state health> person> > and requesting that zach be home serviced. Due to> > his health issues. Zachs lymph nodes are all> > enlarged and he says thats typical for kids w/> > chronic infections. He can hear the junkiness as> he> > says in his lungs. The thought of aspiration is> > still there. He was wondering about thinning his> > secretions, yet they think that he has reflux> which> > i think would make his reflux worse. I had to> > thicken everything. so he says its like a catch> 22.> > The pediatrician wants to do a sweat test to test> > for cystic fibrosis and cilizemy immotility .> Zachs> > had 5 pneumonias since august. Just doesnt think> > that zach can cough up the stuff strong enough> when> > he gets the slightest colds that he just can't>

> handle his own secretions for that not to turn> into> > pneumonia. The dr. thinks it would be rare for> zach> > to have c.f yet, we just looked at each other and> > said well zachs a sorta rare type of kid cause of> > the ga2 and symptoms that no one can figure out.> > He says that the pulmonologist in albany will> > probably ask to do a bronchioscope. That is under> > sedation which i am not keen on. He says they're> all> > trained for any type of emergency in pediatrics w/> > cynotic episodes and other situations. i just hope> > they know what they're doing . It still doesnt> make> > you not worry. I gotta try and get his apt moved> up> > while he has the rattling/pneumonia so they can> see> > how he is. > > > > Anyway thats what happened. > > > > Hey stacey, i

missplaced ur phone number if u have> > mine give me a call so i can keep it on my id > > > > sarah mom to zach 4 ga2 and other more prominent> > health issues. > > > > alexis 6 > > > > > > __________________________________________________> >

[Guest guest]

,

I have mentioned this before to others, but you might see about a percussion vest. It is what the kids with CF use and it has really helped Audrey. She had pneumonia three times in Sept before they got her vest. She gets two treatments daily, each lasting 20 minutes. You might mention it to her doctor and see what they say.

Kathy, grandma to Audrey, 3 yearssarah wrote:

Our pediatrician is calling our state health person and requesting that zach be home serviced. Due to his health issues. Zachs lymph nodes are all enlarged and he says thats typical for kids w/ chronic infections. He can hear the junkiness as he says in his lungs. The thought of aspiration is still there. He was wondering about thinning his secretions, yet they think that he has reflux which i think would make his reflux worse. I had to thicken everything. so he says its like a catch 22. The pediatrician wants to do a sweat test to test for cystic fibrosis and cilizemy immotility . Zachs had 5 pneumonias since august. Just doesnt think that zach can cough up the stuff strong enough when he gets the slightest colds that he just can't handle his own secretions for that not to turn into pneumonia. The dr. thinks it would be rare for zach to have c.f yet, we just looked at each other and said well zachs a sorta rare type of kid cause of the ga2 and symptoms that no one can

figure out. He says that the pulmonologist in albany will probably ask to do a bronchioscope. That is under sedation which i am not keen on. He says they're all trained for any type of emergency in pediatrics w/ cynotic episodes and other situations. i just hope they know what they're doing . It still doesnt make you not worry. I gotta try and get his apt moved up while he has the rattling/pneumonia so they can see how he is.

Anyway thats what happened.

Hey stacey, i missplaced ur phone number if u have mine give me a call so i can keep it on my id

sarah mom to zach 4 ga2 and other more prominent health issues.

alexis 6

__________________________________________________

[Guest guest]

-Please know we continue to pray for Zach and hope you can get the home services you need.

Hugs

Ann

sarah wrote:

Our pediatrician is calling our state health person and requesting that zach be home serviced. Due to his health issues. Zachs lymph nodes are all enlarged and he says thats typical for kids w/ chronic infections. He can hear the junkiness as he says in his lungs. The thought of aspiration is still there. He was wondering about thinning his secretions, yet they think that he has reflux which i think would make his reflux worse. I had to thicken everything. so he says its like a catch 22. The pediatrician wants to do a sweat test to test for cystic fibrosis and cilizemy immotility . Zachs had 5 pneumonias since august. Just doesnt think that zach can cough up the stuff strong enough when he gets the slightest colds that he just can't handle his own secretions for that not to turn into pneumonia. The dr. thinks it would be rare for zach to have c.f yet, we just looked at each other and said well zachs a sorta rare type of kid cause of the ga2 and symptoms that no one can

figure out. He says that the pulmonologist in albany will probably ask to do a bronchioscope. That is under sedation which i am not keen on. He says they're all trained for any type of emergency in pediatrics w/ cynotic episodes and other situations. i just hope they know what they're doing . It still doesnt make you not worry. I gotta try and get his apt moved up while he has the rattling/pneumonia so they can see how he is.

Anyway thats what happened.

Hey stacey, i missplaced ur phone number if u have mine give me a call so i can keep it on my id

sarah mom to zach 4 ga2 and other more prominent health issues.

alexis 6

__________________________________________________

[Guest guest]

Ty very much it means a lot:)

I just pray he dosent have cf.

A E wrote:

-Please know we continue to pray for Zach and hope you can get the home services you need.

Hugs

Ann

sarah wrote:

Our pediatrician is calling our state health person and requesting that zach be home serviced. Due to his health issues. Zachs lymph nodes are all enlarged and he says thats typical for kids w/ chronic infections. He can hear the junkiness as he says in his lungs. The thought of aspiration is still there. He was wondering about thinning his secretions, yet they think that he has reflux which i think would make his reflux worse. I had to thicken everything. so he says its like a catch 22. The pediatrician wants to do a sweat test to test for cystic fibrosis and cilizemy immotility . Zachs had 5 pneumonias since august. Just doesnt think that zach can cough up the stuff strong enough when he gets the slightest colds that he just can't handle his own secretions for that not to turn into pneumonia. The dr. thinks it would be rare for zach to have c.f yet, we just looked at each other and said well zachs a sorta rare type of kid cause of the ga2 and symptoms that no one can

figure out. He says that the pulmonologist in albany will probably ask to do a bronchioscope. That is under sedation which i am not keen on. He says they're all trained for any type of emergency in pediatrics w/ cynotic episodes and other situations. i just hope they know what they're doing . It still doesnt make you not worry. I gotta try and get his apt moved up while he has the rattling/pneumonia so they can see how he is.

Anyway thats what happened.

Hey stacey, i missplaced ur phone number if u have mine give me a call so i can keep it on my id

sarah mom to zach 4 ga2 and other more prominent health issues.

alexis 6

__________________________________________________