Re: Re: Questions and Comments about CF?marion/PattyH

[Guest guest]

Well, I did NOT create that delightful term, and have long since forgotten who

did,

so canot give credit, but, well, it does seem an apt description! n

Re: Questions and Comments about CF

>

>

> Hi all,

>

> I don't post much, just a reader, but I wanted to add my two

cents. I too

> begged my daughters prior pediatrician to do tests knowing

something was wrong.

> They told me she was growing poorly because of her vegetarian

diet and the

> constant " cold " was because she was in daycare. I owe much

gratitude to the

> nurse who decided to go above the doctor's orders and test her

pulse ox. 80 and

> dropping. She was hospitalized and dx'ed with pneumonia. That

was enough

> for them and testing stopped. Her pulse ox went up after two

days of oxygen

> treatment and a round of augmentin but the cough never cleared

up. They insisted

> she was fine and wouldn't even do another chest x-ray. Out of

desperation I

> changed doctors (this was number four). Finally a doctor with

heart, he

> insisted on a Chest X-ray and from there a CAT Scan. Turns out

her lower left lobe

> was collapsed, as if that wasn't heart breaking enough we were

referred to a

> Pulmonologist who thought it would be a good idea to test for

CF. It was if

> we knew and didn't need the test to prove it. Our family thought

it was

> comforting to tell us there was no way. " It's not on either side

of the family! "

> " She is fine, look at her she looks like a normal kid. " Well

after the dx we

> became honorary medical experts and everyone comes to us for

advice, for

> everthing and anything! But the worst job I now have is, as

someone on the list

> once referred to all of us, Poopologist. I get to change every

stinky diaper for

> friends and family because, " After Channa's diapers these must

smell like

> roses! " Sure its heartbreaking, the idea that we may outlive our

kids. I will

> continue to spend nights crying for the crap my daughter has to

put with and

> wishing it would just go away. The first year after dx was the

worst. We try

> to learn as much as we can and we panic over the small things.

But it does get

> easier to handle. The heartbreak doesn't go away it just gets

easier to cope

> with.

>

> Just my two cents, thanks for listening.

>

> Pattie mom to Channa 5wcf.

>

>

>

[Guest guest]

My friend, Kate, coined that term, I believe, At least she was the first to

call me the " Poopologist " when her sister's newborn was having strange stools

and they needed a " consult " via 3 way call!

mom of 5 with CF and one on the way

with a very witty friend

Re: Questions and Comments about CF

>

>

> Hi all,

>

> I don't post much, just a reader, but I wanted to add my two

cents. I too

> begged my daughters prior pediatrician to do tests knowing

something was wrong.

> They told me she was growing poorly because of her vegetarian

diet and the

> constant " cold " was because she was in daycare. I owe much

gratitude to the

> nurse who decided to go above the doctor's orders and test her

pulse ox. 80 and

> dropping. She was hospitalized and dx'ed with pneumonia. That

was enough

> for them and testing stopped. Her pulse ox went up after two

days of oxygen

> treatment and a round of augmentin but the cough never cleared

up. They insisted

> she was fine and wouldn't even do another chest x-ray. Out of

desperation I

> changed doctors (this was number four). Finally a doctor with

heart, he

> insisted on a Chest X-ray and from there a CAT Scan. Turns out

her lower left lobe

> was collapsed, as if that wasn't heart breaking enough we were

referred to a

> Pulmonologist who thought it would be a good idea to test for

CF. It was if

> we knew and didn't need the test to prove it. Our family thought

it was

> comforting to tell us there was no way. " It's not on either side

of the family! "

> " She is fine, look at her she looks like a normal kid. " Well

after the dx we

> became honorary medical experts and everyone comes to us for

advice, for

> everthing and anything! But the worst job I now have is, as

someone on the list

> once referred to all of us, Poopologist. I get to change every

stinky diaper for

> friends and family because, " After Channa's diapers these must

smell like

> roses! " Sure its heartbreaking, the idea that we may outlive our

kids. I will

> continue to spend nights crying for the crap my daughter has to

put with and

> wishing it would just go away. The first year after dx was the

worst. We try

> to learn as much as we can and we panic over the small things.

But it does get

> easier to handle. The heartbreak doesn't go away it just gets

easier to cope

> with.

>

> Just my two cents, thanks for listening.

>

> Pattie mom to Channa 5wcf.

>

>

>