Re: Ashauna/CF Clinics

[Guest guest]

Sara,

That was so nice of you to look up the ville clinic

information for Ashauna? It's people like you that make this group

so great.

Thanks

Gale

> > ,

> > At times I wonder if he is trying to figure out anything. I

> still

> > have not heard from him at all not even a phone call from his

> nurse. I

> > keep calling and nothing just that " for now he does not want to

> put it

> > back in. " This is very aggrivating to me because I don't like to

> feel

> > like the Docs are telling me what is best for my son when I know

> that he

> > needs this. Yesterday without the tube he only took 16 oz of

> formula.

> > I have no way to force feed if he refuses to eat as he does very

> often.

> > No they did not teach me how to replace the tube only to go

to

> er if

> > it came out. I think that it was because a resident was watching

> over

> > us not our actual doc. He and I really got into it while we

were

> > there so he was just probably ready to get me out of there and

for

> that

> > matter I was ready to get out as well. Colgan had it in for 3

> weeks

> > without it coming out so we did pretty well in that area it is

just

> > wondering what the hell is going on now that is making me crazy.

> >

> > Thanks

> > Ashauna

[Guest guest]

It was not big deal. Just a few clicks on the CFF website. Now

let's hope the information on the website is current!

Sara - mommy to Zach 19 months wcf

> > > ,

> > > At times I wonder if he is trying to figure out anything.

I

> > still

> > > have not heard from him at all not even a phone call from his

> > nurse. I

> > > keep calling and nothing just that " for now he does not want

to

> > put it

> > > back in. " This is very aggrivating to me because I don't like

to

> > feel

> > > like the Docs are telling me what is best for my son when I

know

> > that he

> > > needs this. Yesterday without the tube he only took 16 oz of

> > formula.

> > > I have no way to force feed if he refuses to eat as he does

very

> > often.

> > > No they did not teach me how to replace the tube only to

go

> to

> > er if

> > > it came out. I think that it was because a resident was

watching

> > over

> > > us not our actual doc. He and I really got into it while we

> were

> > > there so he was just probably ready to get me out of there and

> for

> > that

> > > matter I was ready to get out as well. Colgan had it in for 3

> > weeks

> > > without it coming out so we did pretty well in that area it is

> just

> > > wondering what the hell is going on now that is making me

crazy.

> > >

> > > Thanks

> > > Ashauna

[Guest guest]

Sara,

I wonder if this is what is going on. Perhaps this is just not the

place that we need to be in. I have just heard such great things about

this doc. I don't know. I wonder if I call the other office if they

will discuss some things with me about what we are going through. Do

you think that I could do over the phone with breif explanation rather

than making an appointment. Perhaps I could tell he what is going on

and she could let me know what she thought. I guess I could try. At

this point I just don't know what to do or think.

Thanks Sara

Ashauna

[Guest guest]

I don't know if they could help or not, but it might be worth a try

just to call. You never know. You might not be the only one

calling.

I didn't check a map before I posted. It would be such a long drive

to use another clinic, so I understand not wanting to do that.

Maybe the other clinic could clarify things for you.

I hope Colgan is eating better today, if not I hope you both are

having a less stressful day.

Sara

> Sara,

> I wonder if this is what is going on. Perhaps this is just

not the

> place that we need to be in. I have just heard such great things

about

> this doc. I don't know. I wonder if I call the other office if

they

> will discuss some things with me about what we are going through.

Do

> you think that I could do over the phone with breif explanation

rather

> than making an appointment. Perhaps I could tell he what is going

on

> and she could let me know what she thought. I guess I could try.

At

> this point I just don't know what to do or think.

> Thanks Sara

> Ashauna

[Guest guest]

Thanks Sara,

He did eat a little better this day. i also did take him in for a

weight check. He has only lost an ounce in three days but still no

gain. UGHHHH I had to go to Pensacola for myself and I thought that I

would drop by clinic. I talked with Dr's nurse and got a little more

clarification out of her. I feel much better knowing that if he needs

to go back on tube they will do that they just want to see if now that

his enzymes are regulated he will have a boost in appitite. I think

that it surprised that that I came in though because so far away from

home. I did not tell them that I was in because I had an appointment

for myself.

By the way does anyone in here have thyroid troubles. Mine is

really acting up and has a cyst on it. I am now taking med for

underactive it used to be over active. It is one thing after another I

just hope that the meds will help me feel better. I will start

synthroid tomarrow. Any of you know anything about it. I am going to

look online tonight to see what I can find.

Thank you

Ashauna

[Guest guest]

Ashauna,

Maybe you should have gone into the medical field. By the time you

get done researching everything, you'll probably be half way there!

My sister and my dad both have thyroid problems and take daily meds

for it. One of the lady's that I work with also has thyroid problems

and she said that stress causes her thyroid to get all out of whack

again and then she has to adjust her meds??? I don't know if this is

true, but it's what she told me earlier this week.

Good luck with your thyroid. I hope that your husband gets home from

Iraq real soon!

Gale

> Thanks Sara,

> He did eat a little better this day. i also did take him in

for a

> weight check. He has only lost an ounce in three days but still no

> gain. UGHHHH I had to go to Pensacola for myself and I thought

that I

> would drop by clinic. I talked with Dr's nurse and got a little

more

> clarification out of her. I feel much better knowing that if he

needs

> to go back on tube they will do that they just want to see if now

that

> his enzymes are regulated he will have a boost in appitite. I think

> that it surprised that that I came in though because so far away

from

> home. I did not tell them that I was in because I had an

appointment

> for myself.

> By the way does anyone in here have thyroid troubles. Mine is

> really acting up and has a cyst on it. I am now taking med for

> underactive it used to be over active. It is one thing after

another I

> just hope that the meds will help me feel better. I will start

> synthroid tomarrow. Any of you know anything about it. I am going

to

> look online tonight to see what I can find.

> Thank you

> Ashauna

[Guest guest]

Gale,

I am learning slow along with all the rest of us on here There

is so much I have just joined another group in yahoo that blows my mind

it is also CF related. I am lucky to understand 2 sentances that are

posted a day. i just start there and look up all the words that I don't

understand. THERE ARE A LOT!!!!!!

As far as thyroid. Mine has really been affected by stress. It

seems like when I am at my worst is when it starts acting up a lot.

Unfortunately even when I feel pretty stressless I still have troubles.

Oh well I guess I will live after all it is only a pill that I have to

take once a day nothing compared to what my little Colgan goes through

every day.

Love to you

Ashauna

[Guest guest]

We go to this clinic and see Dr. Hudak; she is wonderful! In fact all the

nurses and doctors are great and very understanding. If you have any questions

that you would like answered give them a call they will do everything possible

to help you. Ask to speak to if you call. If you are planning a visit

here maybe we could meet somewheres.

Tina Mom to Christian 11 yowcf

[Guest guest]

Tina,

It is still a posibility that I may look into going over there for

a visit. I am not sure. Things have been going a little better hear at

the clinic and I feel that I have gotten my foot where it needs to be so

they will do what is nesesary for my son. If I do go in that direction I

would love to meet with you. I am all for getting to know as many

people in this as possible. Thank you for your offer to do so.

Ashauna. (( I'll let you know ok ))