Fwd: 's clinic today

[Guest guest]

Dear Friends,

We had our clinic visit today for ;s post-inpatient and post-op stuff.

Things are better with her but it seems as if we aren't ever going to get back

to her (old) usual state of excellent health. I am trying to remain optimistic

about this but it's hard. I understand most ppl with CF don't get this long

(15+ yrs) before their lungs health start to decline. And Ang has been sick

before but this admission has changed everything. While we had the luxury of

being lax sometimes before with 's treatments and cpt, we cannot be lax

any longer. this was because her problems in her younger days were mainly sinus

and asthma related. But Today , a week after her discharge from the two-week

admission, she is feeling better, she looks wonderful--she has lost 10 lbs, but

losing this much is OK but as her GI doc said to her, " I don not want you to

lose anymore weight! " I didn't want her to lose this weight in the first place

but I suppose secretly she may have. Shes 122 now and 5'3 " and looks fabulous!

we just don't want these lbs to continue to fall off. The GI said go ahead and

increase her enzymes a little, for now, to take 3 Ultrase with meals and 1-2

w/snacks.

As for pulmonary, no PFT's today but they are ordered, so we shall need to get

back over there in the next week or so and do that. She was tight and not able

to produce a sample for culture so she had the dreaded throat culture---not

really SOOOOO bad today, and she got a flu shot. Glad to get that taken care

of. I asked about colistin and the doc agreed she can try it again. Now I need

the coly advice again. We couldn't get it yet, and I already called our lovely

HMO and tried to get this authorization prcess started. The only thing it seems

that *I* can do is call Elaine in the AM and encourage her to get this done

tomorrow! If this is even possible, with it being Thanksgiving and all. The

pulmo doc said she still sounds decreased and he is hearing crackles. So the

days of her chest being " all clear " may be past. I don't know. Oh and yes if

anyone can, please send me all the helpful hits you have for cloy use---I will

check the Holy FAQ Handbook also.

After CF clinic we trudged across the street to the ENT's office, and after a

LOVELY hour wait (not so bad, this ENT is great but the office is usually in

chaos.) we got to see the doc. I adore both the docs in this office--they are

so nice and are really great docs. Things were OK, the doc removed a bit of

scarring (she called it a " scar ring " that had already formed in one side of her

nose), and it hurt a bit but not too badly. She took some junk for a culture

also so we see on both cultures Monday I suppose.

All in all things went well today and I felt Ok about this visit in general.

Our social worker took a few minutes to talk with me and shes really a sweetie

too. she was worried about me and the lack of support I feel when is

sick. I wish I had some closer (in distance)CF moms , or ppl who I didn't feel

guilty about calling them and saying " I need your help, can you please come sit

with me today, as my daughter is having surgery. " I dunno, we have been wanting

to get back into church and now maybe we can find the time again.

I guess thats enough from me, and I continue to be thankful for these lists and

the unconditional love I feel from so many. thanks

Everyone please have a great Thanksgiving and a restful and peaceful weekend.

If you are reading this and you are on the CF parents list pls forward, to the

CF parents list ppls, I am going to come back on there soon if I can! I miss

ya'll too!

love & hugs,

Bren

" 6 Billion People in the World and the Spirit Weeps for all of us,

Worldwide............. "

Adam Again

morey@...