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OK here goes, I have never vented so I hope it's ok with everyone. Both of

my daughters with CF Kaylee 6 and Kenedy 4 were admitted to the hospital on the

12th of September well Kenedy had pnemonia and grew pseudomonus, Kaylee who

has " severe " CF was really crackly and her PFT's were 59 she grew pseudomonus

and staff. After a week(Sept 19) neither were any better, but they sent us

home on home meds for another week(one has a port other had a picc line) I have

done this before but I thought we should stay there because they were both

still so sick. Well come to find out medicaid only pays one amount no matter

how

many days we are in there and the docs were catching heck because they needed

the rooms, THEY WERE LOOSING MONEY ON US!!!! I was furious and still am.

Kenedy now has a sore throat so bad she can't even swallow and Kaylee ran a

temperature of 103 last night. Of course I guess we could go back, maybe they

would get paid more since it will be a new admission, but auugh it is so

aggrevaiting. Now one of the people who work close with Kaylee made the comment

that she is " just holding her own " Hello, what's that suppose to mean? They

don't tell me much they just like to leave me hanging, and believe me I DO ask

questions. Well anyway, I feel a litttle better, thanks for listening.

Sandy

Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo

w/CF - Kaylee

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Sandy,

Oh, please, vent all you want, you have to. It is hard enough to

deal with cf, but to also deal with all this freaking, messed up

system, it is totally unacceptable!!

I will keep you in my very special thoughts,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

>

> OK here goes, I have never vented so I hope it's ok with everyone.

Both of

> my daughters with CF Kaylee 6 and Kenedy 4 were admitted to the

hospital on the

> 12th of September well Kenedy had pnemonia and grew pseudomonus,

Kaylee who

> has " severe " CF was really crackly and her PFT's were 59 she grew

pseudomonus

> and staff. After a week(Sept 19) neither were any better, but they

sent us

> home on home meds for another week(one has a port other had a picc

line) I have

> done this before but I thought we should stay there because they

were both

> still so sick. Well come to find out medicaid only pays one amount

no matter how

> many days we are in there and the docs were catching heck because

they needed

> the rooms, THEY WERE LOOSING MONEY ON US!!!! I was furious and

still am.

> Kenedy now has a sore throat so bad she can't even swallow and

Kaylee ran a

> temperature of 103 last night. Of course I guess we could go back,

maybe they

> would get paid more since it will be a new admission, but auugh it

is so

> aggrevaiting. Now one of the people who work close with Kaylee

made the comment

> that she is " just holding her own " Hello, what's that suppose to

mean? They

> don't tell me much they just like to leave me hanging, and believe

me I DO ask

> questions. Well anyway, I feel a litttle better, thanks for

listening.

> Sandy

> Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF -

and 6 yo

> w/CF - Kaylee

>

>

>

>

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Bless your heart. I am so very sorry they are not anymore informed at the

Medicaid office . that is purely STUPID. penny wise & pound foolish too.

Maybe someone should in service the Medicaid honchos at the capitol so they

can really save themselves money by doing it right the first time so they

(patients) aren't back in as often. Gosh..................That is just so

scary . I do send all my special wishes over you all . I know your going

thru such turmoil worrying about your wee ones.

I hope they are doing somewhat better now.

WRITE HERE ANYTIME> THIS IS A SUPPORT GROUP FOR EACH OTHER. We all

understand...... & care

LOVE & HUGS< grandmomBEV

venting

OK here goes, I have never vented so I hope it's ok with everyone. Both of

my daughters with CF Kaylee 6 and Kenedy 4 were admitted to the hospital on

the

12th of September well Kenedy had pnemonia and grew pseudomonus, Kaylee who

has " severe " CF was really crackly and her PFT's were 59 she grew

pseudomonus

and staff. After a week(Sept 19) neither were any better, but they sent us

home on home meds for another week(one has a port other had a picc line) I

have

done this before but I thought we should stay there because they were both

still so sick. Well come to find out medicaid only pays one amount no

matter how

many days we are in there and the docs were catching heck because they

needed

the rooms, THEY WERE LOOSING MONEY ON US!!!! I was furious and still am.

Kenedy now has a sore throat so bad she can't even swallow and Kaylee ran a

temperature of 103 last night. Of course I guess we could go back, maybe

they

would get paid more since it will be a new admission, but auugh it is so

aggrevaiting. Now one of the people who work close with Kaylee made the

comment

that she is " just holding her own " Hello, what's that suppose to mean?

They

don't tell me much they just like to leave me hanging, and believe me I DO

ask

questions. Well anyway, I feel a litttle better, thanks for listening.

Sandy

Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo

w/CF - Kaylee

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Ummmmmm...I'd be HOT!!! I wouldn't let them ship me home if my kids were still

feeling really terrible whether they were losing money or not. Personally, I

think I'd give some hospital person a piece of my mind....

Dawn mom of 4, 7 and under, the youngest wcf

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Dear Kaylee,

I am so sorry you have to go through this. I wish those people who wont pay

could be in our shoes for just one 24 hour period of taking care of our sick

children, not to mention 2 little ones.

My heart is sad for you and I just want to kick our health people for not

understanding.

judy mom to 20 in 17 days

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sorry Sandy, I read the bottom part wrong. I feel for your children also.

judy

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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I couldn't even reply to your message at first. It is so awful that

our system did this to you and to your children. It's too awful to

imagine. I am really sorry for the uneccessary added stress that you

have been put under.

Do you go to a Children's Hospital? We were told that the Children's

Hospital here in Columbus will not treat any patient differently

(insurance or no insurance). I wonder if it's really true.

I wish you and your girls well and hope that you get some help. It

would be nice if the home nurse could stay in your house day and

night.

Gale

>

> OK here goes, I have never vented so I hope it's ok with everyone.

Both of

> my daughters with CF Kaylee 6 and Kenedy 4 were admitted to the

hospital on the

> 12th of September well Kenedy had pnemonia and grew pseudomonus,

Kaylee who

> has " severe " CF was really crackly and her PFT's were 59 she grew

pseudomonus

> and staff. After a week(Sept 19) neither were any better, but they

sent us

> home on home meds for another week(one has a port other had a picc

line) I have

> done this before but I thought we should stay there because they

were both

> still so sick. Well come to find out medicaid only pays one amount

no matter how

> many days we are in there and the docs were catching heck because

they needed

> the rooms, THEY WERE LOOSING MONEY ON US!!!! I was furious and

still am.

> Kenedy now has a sore throat so bad she can't even swallow and

Kaylee ran a

> temperature of 103 last night. Of course I guess we could go back,

maybe they

> would get paid more since it will be a new admission, but auugh it

is so

> aggrevaiting. Now one of the people who work close with Kaylee

made the comment

> that she is " just holding her own " Hello, what's that suppose to

mean? They

> don't tell me much they just like to leave me hanging, and believe

me I DO ask

> questions. Well anyway, I feel a litttle better, thanks for

listening.

> Sandy

> Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF -

and 6 yo

> w/CF - Kaylee

>

>

>

>

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In a message dated 9/25/2003 9:57:13 AM Central Daylight Time,

blueyejud@... writes:

Dear Kaylee,

I am so sorry you have to go through this. I wish those people who wont pay

could be in our shoes for just one 24 hour period of taking care of our sick

children, not to mention 2 little ones.

My heart is sad for you and I just want to kick our health people for not

understanding.

judy mom to 20 in 17 days

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It is so true that those who do not stand in the shoes of the handicapped

or chronicly ill, nor in those of their parents. have no idea of the

financial

burden born by so many for so many. I do wish I were younger and could do

more about this; I just send letters to my sentators and congre

ssmanm, who by now must wonder just how many groups I do represent! Actually

it is only cf! Thanks to those who do take action,

such as Lenora Degan on behalf of CF Awareness Week in the usa!

Love to all at cf parents--venting also!

n Rojas

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