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Re: Update on Jordan

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Could you check to see if a Mc house is close to the

hospital? Maybe they would let you stay. I hope his tests are all

big NEGATIVES!

SAra

> Well here is what I found out today. I was not due to go in till

tomorrow but I could not wait any longer and I called to see if they

could get Jordan in today and they could.

>

> The DR. explained to me that by this sweat test Jordan is + for

CF. He however wants to send me to another hospital in Columbus Ohio

(4-5 hours away) to have a more accurate test done there for a 2nd

opinion. He said that his levels were elevated and that he has some

real concerns about this. He said he did not want to get into

telling me any treatments or anything until we get the results back

from this test.

>

> He said that Jordan's blood counts looked good and he was not

anemic(spelling) They also did some type of stomach blood work but

it was not back when we met today. That is the only blood work they

have done. I had Jordan taken to King's Daughter's Medical Center

and Dr. s wanted to get a re-test in a children's hospital.

>

> We do not have the appt as of yet but I was told they generally

want to see you early in the mornings(7-8am) This means that we

will have to travel up there the night before and stay in a hotel to

make it there on time. This has me worried as we do not have funds

to do this. Jordan is on a medical card and we receive state aid.

I know that a way will be provided if I just trust that it will but

trusting is the hard part. Any of you ever have this type of

problem? What did you do?

>

> Thanks to all for letting me be on this group as I am going

through this situation. Even if Jordan does not have CF then I will

have learned quite a bit from you all in the little bit of time ive

been here and I will be able to help someone else that might have to

go through this. Thanks to you all.

> Rhonda

> Check out my new online business!! They are AWESOME!

> ***Photo Magnets*** http://www.heavenstreasurechest.com

>

>

>

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Let me do some checking. What children's hospital is he going to?

You also might want to bring this up to the doctor who is making the

arrangements at the far away hospital. He may have the name of the

right person to call.

> hmmm i have never been in this situation. what would i do?

> Rhonda

> Check out my new online business!! They are AWESOME!

> ***Photo Magnets*** http://www.heavenstreasurechest.com

>

>

>

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This is info I copied from their website. I hope it is accurate for

you.

" If you live outside lin County, we can help you find a place

to stay. The Mc House may be able to help. It is across

the street from the Outpatient Care Center at 574 South 18th Street.

Families with critically ill children will be placed first. The

Mc House has limited space for families.

Patient Placement Nursing can help you make plans for an overnight

stay. Call them at ext. 2218 from in the Hospital or 722-2218 from

outside the Hospital. Children's Hospital wants to make your

family's stay as comfortable as possible. "

Sara

> it's children's hospital in columbus ohio. I guess t hat's what

it is called. I am so new to this :( sorry i dont have more

answers

> Rhonda

> Check out my new online business!! They are AWESOME!

> ***Photo Magnets*** http://www.heavenstreasurechest.com

>

>

>

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Thanks Sara! I called that # and they put me in connection with the

Mcdonald House and they are going to call me tomorrow.

Has anyone ever stayed at one of these? Are they pretty nice? What's it like?

ARGH Im so worried and frightened by all this. It's really a hard thing to have

to get used to. I am not used to this kind of thing. Again thanks Sara for

finding that.

Does anyone know anything about the children's hospital in Columbus Ohio?

Rhonda

Check out my new online business!! They are AWESOME!

***Photo Magnets*** http://www.heavenstreasurechest.com

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They are wonderful & so helpful .Ask for the info sheet -or whatever they

call it BUT , they have so many various helpful things they do . Either free

or VERY cheap...........

LOVE & HUGS,

GrandmomBEV

Re: Re: Update on Jordan

Thanks Sara! I called that # and they put me in connection with the

Mcdonald House and they are going to call me tomorrow.

Has anyone ever stayed at one of these? Are they pretty nice? What's it

like? ARGH Im so worried and frightened by all this. It's really a hard

thing to have to get used to. I am not used to this kind of thing. Again

thanks Sara for finding that.

Does anyone know anything about the children's hospital in Columbus Ohio?

Rhonda

Check out my new online business!! They are AWESOME!

***Photo Magnets*** http://www.heavenstreasurechest.com

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Rhonda,

If you get in touch with the children's hospital, they will probably have info

for you about a place to stay. Many places have a ronald mcdonald house nearby

or something of that type. Maybe the CF clinic will be understanding of your

travel situation and schedule the appointment for later in the day. Explain the

situation to them when you make the appointment or just call them after the doc

sets it up(if that is what is happening)

We are happy to have you in this group even if we are not happy that your little

guy has CF. We are happy to help.

Update on Jordan

Well here is what I found out today. I was not due to go in till tomorrow but

I could not wait any longer and I called to see if they could get Jordan in

today and they could.

The DR. explained to me that by this sweat test Jordan is + for CF. He

however wants to send me to another hospital in Columbus Ohio(4-5 hours away) to

have a more accurate test done there for a 2nd opinion. He said that his levels

were elevated and that he has some real concerns about this. He said he did not

want to get into telling me any treatments or anything until we get the results

back from this test.

He said that Jordan's blood counts looked good and he was not anemic(spelling)

They also did some type of stomach blood work but it was not back when we met

today. That is the only blood work they have done. I had Jordan taken to

King's Daughter's Medical Center and Dr. s wanted to get a re-test in a

children's hospital.

We do not have the appt as of yet but I was told they generally want to see

you early in the mornings(7-8am) This means that we will have to travel up

there the night before and stay in a hotel to make it there on time. This has

me worried as we do not have funds to do this. Jordan is on a medical card and

we receive state aid. I know that a way will be provided if I just trust that

it will but trusting is the hard part. Any of you ever have this type of

problem? What did you do?

Thanks to all for letting me be on this group as I am going through this

situation. Even if Jordan does not have CF then I will have learned quite a bit

from you all in the little bit of time ive been here and I will be able to help

someone else that might have to go through this. Thanks to you all.

Rhonda

Check out my new online business!! They are AWESOME!

***Photo Magnets*** http://www.heavenstreasurechest.com

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Rhonda,

We live near Columbus and use the Columbus CF Care Center at

Children's Hospital. They have great doctors. If you need anything

while in Columbus, please let me know. I'd be happy to help out. If

you end up staying in Columbus and want company, let me know and I'll

bring you a sandwich or something. My grand daughter is 21 months

old and has cf.

Gale

614/846-8627

> Well here is what I found out today. I was not due to go in till

tomorrow but I could not wait any longer and I called to see if they

could get Jordan in today and they could.

>

> The DR. explained to me that by this sweat test Jordan is + for

CF. He however wants to send me to another hospital in Columbus Ohio

(4-5 hours away) to have a more accurate test done there for a 2nd

opinion. He said that his levels were elevated and that he has some

real concerns about this. He said he did not want to get into

telling me any treatments or anything until we get the results back

from this test.

>

> He said that Jordan's blood counts looked good and he was not anemic

(spelling) They also did some type of stomach blood work but it was

not back when we met today. That is the only blood work they have

done. I had Jordan taken to King's Daughter's Medical Center and Dr.

s wanted to get a re-test in a children's hospital.

>

> We do not have the appt as of yet but I was told they generally

want to see you early in the mornings(7-8am) This means that we will

have to travel up there the night before and stay in a hotel to make

it there on time. This has me worried as we do not have funds to do

this. Jordan is on a medical card and we receive state aid. I know

that a way will be provided if I just trust that it will but trusting

is the hard part. Any of you ever have this type of problem? What

did you do?

>

> Thanks to all for letting me be on this group as I am going through

this situation. Even if Jordan does not have CF then I will have

learned quite a bit from you all in the little bit of time ive been

here and I will be able to help someone else that might have to go

through this. Thanks to you all.

> Rhonda

> Check out my new online business!! They are AWESOME!

> ***Photo Magnets*** http://www.heavenstreasurechest.com

>

>

>

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The Mc house is across the street from the Columbus CF

Care Center. The hospital guards will even walk you over to the

house, if it is after dark and you ask them to. The Mc

house is REALLY nice. They provide your meals and a laundry room

(complete with everything you need). You can not reserve a room in

advance. If you are asked to saty at the hospital, you talk to the

social worker or call the Mc house for a room. The CF

Clinic also has parent overnight rooms that can be used the first

night. They are similar to a hotel room.

Please let me know if I can help.

Gale

> > Well here is what I found out today. I was not due to go in till

> tomorrow but I could not wait any longer and I called to see if

they

> could get Jordan in today and they could.

> >

> > The DR. explained to me that by this sweat test Jordan is + for

> CF. He however wants to send me to another hospital in Columbus

Ohio

> (4-5 hours away) to have a more accurate test done there for a 2nd

> opinion. He said that his levels were elevated and that he has

some

> real concerns about this. He said he did not want to get into

> telling me any treatments or anything until we get the results back

> from this test.

> >

> > He said that Jordan's blood counts looked good and he was not

> anemic(spelling) They also did some type of stomach blood work but

> it was not back when we met today. That is the only blood work

they

> have done. I had Jordan taken to King's Daughter's Medical Center

> and Dr. s wanted to get a re-test in a children's hospital.

> >

> > We do not have the appt as of yet but I was told they generally

> want to see you early in the mornings(7-8am) This means that we

> will have to travel up there the night before and stay in a hotel

to

> make it there on time. This has me worried as we do not have funds

> to do this. Jordan is on a medical card and we receive state aid.

> I know that a way will be provided if I just trust that it will but

> trusting is the hard part. Any of you ever have this type of

> problem? What did you do?

> >

> > Thanks to all for letting me be on this group as I am going

> through this situation. Even if Jordan does not have CF then I

will

> have learned quite a bit from you all in the little bit of time ive

> been here and I will be able to help someone else that might have

to

> go through this. Thanks to you all.

> > Rhonda

> > Check out my new online business!! They are AWESOME!

> > ***Photo Magnets*** http://www.heavenstreasurechest.com

> >

> >

> >

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sorry about that strange typing--I think that " nuy " was supposed to be

" but " --pays to proofread!

Sorry, but those who know me know that this is probably life-long!

Love to all at cfparents,

n Rojas

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