Re: Seeing file on son fr: dr

[Guest guest]

Hi there Patty ,

I am home for just a wee time here & checked the list .I am sorry your

having hard time getting hold of BUT , your right , we spoke of this

before. SHE is way too busy. they need to add someone to help her too. BUT,

I was just thinking , get to know the MSW (med. Social worker ) & as her to

find out for you. It is YOUR info, so she wont be breaking any HIPPA laws.

Your the guardian MOM----if she says anything , then

add --DUH...........:) Really . that info is yours to have actually.

As you said the other place might send info to you too. I was so sorry about

your bouncing fall from the bike. BUT-------I bet they did think that was

funny. They couldn't feel the pain though :) Bless you & I sure hope your

not as sore today (sometimes, it gets worse after few days BEFORE it gets

better. Love to you & your precious family..

Happy New Year !!

LOVE & HUGS<

GRANDMOMBEV

Seeing file on son fr: dr

Hey all!After replying in re: to new post (i think Brynn9779) I

realized that there is alot of things this hospital in Fl doesnt

share with me like Michigan children hosp. did.I feel like the cf

nurse coordinator is much too busy to discuss stuff with me, i mean

she tries, but i feel really pressured, i can TOTALLY tell she is,

and so then i hate to take her time asking much.Its more like, " hey

hows he doing, really?heres the game plan " sorta thing.I want to look

at my sons file, I dont know why, but i do, and now i'm on a

mission.Isn't that my right as the parent?I want to see what they say

about his mutation, what ever happened to sputum cultures I never

heard anything about, tests they've done i never heard results to,

like i feel i have no control over what theyre doing with him, and i

hate that.Basically i feel like when Tyler was last admitted dec 4

this yr they mentioned to me he had cultured PA and fungus.Like,

could somebody call and let me know this crap?Its important.Who knows

how long they let it sit in his lungs before they did anything about

it.No wonder he had crackles in his lungs and was unresponsive to

Tobi inhaled, he probably had these 2 darned things for months w/o

them telling me.Bev said this cf nurse is EXTREMELY busy cuz she's

the only one and they have satellite something or others, i think

other offices, i feel bad for her, but not bad enuff to risk my sons

health cuz of it.

Sorry guys, I guess i woke up with ALOT to say today, lol! :)

Plz let me know what you think.

Patty, mom to Ty;er8wcf and 2wocf in Florida, can you believe its

still hot heere, when will it ever end?

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

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.

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

[Guest guest]

Its always nice to hear from you ((((Bev)))).I'll take your advice

and call the msw today.Hope all is well with you and the family.

Take care,

Patty

>

>

> Hi there Patty ,

> I am home for just a wee time here & checked the list .I am sorry

your

> having hard time getting hold of BUT , your right , we

spoke of this

> before. SHE is way too busy. they need to add someone to help her

too. BUT,

> I was just thinking , get to know the MSW (med. Social worker ) &

as her to

> find out for you. It is YOUR info, so she wont be breaking any

HIPPA laws.

> Your the guardian MOM----if she says anything , then

> add --DUH...........:) Really . that info is yours to have

actually.

> As you said the other place might send info to you too. I was so

sorry about

> your bouncing fall from the bike. BUT-------I bet they did think

that was

> funny. They couldn't feel the pain though :) Bless you & I sure

hope your

> not as sore today (sometimes, it gets worse after few days BEFORE

it gets

> better. Love to you & your precious family..

> Happy New Year !!

> LOVE & HUGS<

> GRANDMOMBEV

>

>

> Seeing file on son fr: dr

>

>

> Hey all!After replying in re: to new post (i think Brynn9779) I

> realized that there is alot of things this hospital in Fl doesnt

> share with me like Michigan children hosp. did.I feel like the cf

> nurse coordinator is much too busy to discuss stuff with me, i mean

> she tries, but i feel really pressured, i can TOTALLY tell she is,

> and so then i hate to take her time asking much.Its more like, " hey

> hows he doing, really?heres the game plan " sorta thing.I want to

look

> at my sons file, I dont know why, but i do, and now i'm on a

> mission.Isn't that my right as the parent?I want to see what they

say

> about his mutation, what ever happened to sputum cultures I never

> heard anything about, tests they've done i never heard results to,

> like i feel i have no control over what theyre doing with him, and i

> hate that.Basically i feel like when Tyler was last admitted dec 4

> this yr they mentioned to me he had cultured PA and fungus.Like,

> could somebody call and let me know this crap?Its important.Who

knows

> how long they let it sit in his lungs before they did anything about

> it.No wonder he had crackles in his lungs and was unresponsive to

> Tobi inhaled, he probably had these 2 darned things for months w/o

> them telling me.Bev said this cf nurse is EXTREMELY busy cuz she's

> the only one and they have satellite something or others, i think

> other offices, i feel bad for her, but not bad enuff to risk my sons

> health cuz of it.

> Sorry guys, I guess i woke up with ALOT to say today, lol! :)

> Plz let me know what you think.

> Patty, mom to Ty;er8wcf and 2wocf in Florida, can you believe its

> still hot heere, when will it ever end?

>

>

> -------------------------------------------

> 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.

>

> ------------------------------------

>

>

>

[Guest guest]

I always ASK about the cultures and whatnot because they will not think to tell

you about it when you go for your next follow up. I also had the doc explain to

me about the mutations and what they mean...... Write everything you want to

know about down and bring the list with you. Make notes when they explain

things and repeat what they say back to them to make sure you have got it right.

Sure the docs and nurses are busy but YOU have the right to leave that

appointment with the feeling that you know what is going on with your child.

They should let you see the chart on your child anytime you ask. 's doc

will routinely say " here let me show you this in the file..... " and explains

stuff to me.

Ask for the file AND explanations.

Mom of 5 with CF and one on the way

Seeing file on son fr: dr

Hey all!After replying in re: to new post (i think Brynn9779) I

realized that there is alot of things this hospital in Fl doesnt

share with me like Michigan children hosp. did.I feel like the cf

nurse coordinator is much too busy to discuss stuff with me, i mean

she tries, but i feel really pressured, i can TOTALLY tell she is,

and so then i hate to take her time asking much.Its more like, " hey

hows he doing, really?heres the game plan " sorta thing.I want to look

at my sons file, I dont know why, but i do, and now i'm on a

mission.Isn't that my right as the parent?I want to see what they say

about his mutation, what ever happened to sputum cultures I never

heard anything about, tests they've done i never heard results to,

like i feel i have no control over what theyre doing with him, and i

hate that.Basically i feel like when Tyler was last admitted dec 4

this yr they mentioned to me he had cultured PA and fungus.Like,

could somebody call and let me know this crap?Its important.Who knows

how long they let it sit in his lungs before they did anything about

it.No wonder he had crackles in his lungs and was unresponsive to

Tobi inhaled, he probably had these 2 darned things for months w/o

them telling me.Bev said this cf nurse is EXTREMELY busy cuz she's

the only one and they have satellite something or others, i think

other offices, i feel bad for her, but not bad enuff to risk my sons

health cuz of it.

Sorry guys, I guess i woke up with ALOT to say today, lol! :)

Plz let me know what you think.

Patty, mom to Ty;er8wcf and 2wocf in Florida, can you believe its

still hot heere, when will it ever end?

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

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.

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

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

[Guest guest]

Patty,

We always call or email the nurse a week after a throat culture to

get the results. We have found it a lot easier to communicate by

email rather than phone tag. Maybe you can try that. Any time I

have a question I email both of the nurses at our clinic and which

ever one has time first will respond. Like someone else suggested,

make a list of questions before your clinic visit so you don't forget

to ask something. It also helps to take another adult to clinic with

you. My husband and I both try to go so we can back each other up

and help remember to ask all the questions we have and also the

answers we get. We are very lucky, all of the drs. at Shands have

been very helpful and will sit and answer questions as long as we

ask. We never feel rushed and they are always very responsive to our

concerns.

Angie (Ma to JC, 3yo, wcf)

> Hey all!After replying in re: to new post (i think Brynn9779) I

> realized that there is alot of things this hospital in Fl doesnt

> share with me like Michigan children hosp. did.I feel like the cf

> nurse coordinator is much too busy to discuss stuff with me, i mean

> she tries, but i feel really pressured, i can TOTALLY tell she is,

> and so then i hate to take her time asking much.Its more like, " hey

> hows he doing, really?heres the game plan " sorta thing.I want to

look

> at my sons file, I dont know why, but i do, and now i'm on a

> mission.Isn't that my right as the parent?I want to see what they

say

> about his mutation, what ever happened to sputum cultures I never

> heard anything about, tests they've done i never heard results to,

> like i feel i have no control over what theyre doing with him, and

i

> hate that.Basically i feel like when Tyler was last admitted dec 4

> this yr they mentioned to me he had cultured PA and fungus.Like,

> could somebody call and let me know this crap?Its important.Who

knows

> how long they let it sit in his lungs before they did anything

about

> it.No wonder he had crackles in his lungs and was unresponsive to

> Tobi inhaled, he probably had these 2 darned things for months w/o

> them telling me.Bev said this cf nurse is EXTREMELY busy cuz she's

> the only one and they have satellite something or others, i think

> other offices, i feel bad for her, but not bad enuff to risk my

sons

> health cuz of it.

> Sorry guys, I guess i woke up with ALOT to say today, lol! :)

> Plz let me know what you think.

> Patty, mom to Ty;er8wcf and 2wocf in Florida, can you believe its

> still hot heere, when will it ever end?