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Re: Zach update

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Sara,

Please keep us posted and let us know how the bronch goes. How do

they do a bronch on someone so little?

Gale

> Zach cultured PA again after one cycle of TOBI. He will be

> scheduled for a bronchoscopy after the holidays. If he has PA in

> his lungs they will put him the hospital for iv's. We hope he can

> avoid the hospital for a while.

> Sara - mommy of Zach 22 months

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Hey Sara,

I am so sorry that the PA is not gone? I am glad to hear that you will

be home for the holidays? Did you get my message about the gown?

Thinking of you, we are connected since your son's name is Zac like my

oldest and we both have 22 month olds with CF.

Cheryl ( had some wine at the moment)

Zach update

Zach cultured PA again after one cycle of TOBI. He will be

scheduled for a bronchoscopy after the holidays. If he has PA in

his lungs they will put him the hospital for iv's. We hope he can

avoid the hospital for a while.

Sara - mommy of Zach 22 months

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

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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Wine does sound good at the moment. I got the message about the

gown. We hope he won't need it, but if he does I know he would

enjoy wearing Pooh at the hospital.

I didn't know you had a Zach too. That is funny.

I hope you are all feeling well and staying away from the flu. We

all have avoided it so far. Knock on wood.

Sara

> Hey Sara,

>

> I am so sorry that the PA is not gone? I am glad to hear that you

will

> be home for the holidays? Did you get my message about the gown?

>

> Thinking of you, we are connected since your son's name is Zac

like my

> oldest and we both have 22 month olds with CF.

>

> Cheryl ( had some wine at the moment)

>

> Zach update

>

> Zach cultured PA again after one cycle of TOBI. He will be

> scheduled for a bronchoscopy after the holidays. If he has PA in

> his lungs they will put him the hospital for iv's. We hope he can

> avoid the hospital for a while.

> Sara - mommy of Zach 22 months

>

>

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

> 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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Not sure, but I know he must be sedated by iv. I think it will be

similar to his ear surgery. He will have to go under and then wake

up from the anethestic really cranky. I am glad they decided to do

this instead of automatically going to iv tobramycin. It may not be

necessary if the pa is not growing in his lungs. We could do

inhaled TOBI again.

Sara

> > Zach cultured PA again after one cycle of TOBI. He will be

> > scheduled for a bronchoscopy after the holidays. If he has PA

in

> > his lungs they will put him the hospital for iv's. We hope he

can

> > avoid the hospital for a while.

> > Sara - mommy of Zach 22 months

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That's for the explanation. Abby has not had a bronch and I was just

wondering. I hope that Zach's bronch goes smoothly and that you get

good news.

Gale

> > > Zach cultured PA again after one cycle of TOBI. He will be

> > > scheduled for a bronchoscopy after the holidays. If he has PA

> in

> > > his lungs they will put him the hospital for iv's. We hope he

> can

> > > avoid the hospital for a while.

> > > Sara - mommy of Zach 22 months

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Oops! I meant to say " Thanks for the explanation. "

Sorry about that.

Gale

> > > > Zach cultured PA again after one cycle of TOBI. He will be

> > > > scheduled for a bronchoscopy after the holidays. If he has

PA

> > in

> > > > his lungs they will put him the hospital for iv's. We hope

he

> > can

> > > > avoid the hospital for a while.

> > > > Sara - mommy of Zach 22 months

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  • 2 months later...

Well, the family I know is in Griggsville and it happened to them 21 years ago

so that was awhile ago but their daughter was born premature and was born in

Quincy and they kept her there as they said she was fine. She had difficulty

sitting up at 6 mo and at 12 months given the diagnosis. She is now a sr at Uof

I and is in a wheelchair and extremely bright! Also an avid Cub fan! Let me

know and I can give you the info if needed. Debbie

Zach update

>

>

> We had cf clinic yesterday. Zach gained a little weight. He

weighs

> 24.3 pounds now. Yeah! His blood tests are all good too.

> We went to his 2 year old well baby check up today and our ped

is

> very concerned about Zach's walking. He walks on his toes with

his

> right foot turned in. She is concerned it could be cerebral

palsy

> or muscular dystrophy. I had already scheduled a follow up

> appointment with a pediatric othropedic specialist, but she also

> wants us to see a develpmental pediatrician. This was quite a

shock

> to hear her say these words.

> Does anyone have a child with cf and cp or md?

>

> Sara - mommy of Zach 2yo wcf

>

>

>

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

> 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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