Re: re:complain, complain, complain....

[Guest guest]

Betsy,

I don't have a lot of expertise in this area (trachs/suctioning/pulmonology,

etc) but the frustration of trying to figure out a CHARGEr - well I've certainly

been there a few times. The only thing I might be able to tell you is that I've

heard here on the list that Robinul seems to only work for most of these guys

that have been on it for a week or two then their bodies become used to it and

it is no longer effective, so maybe that is what's happening and the saliva is

going to his lungs? I'm not sure...I know Bradley little girl was on

Robinul and he seemed to know more about it...maybe he'll jump in here...

Good luck getting things figured out, you'll probably be the one to figure it

all out before the docs...

Mom to Kennedy 2yr old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

re:complain, complain, complain....

From: eokoko@...

Hi everyone. Ugh, what a week I am having. (How's that for an opener?)I am so

completely worn down from 's never-ending respiratory issues. B/w him and

my 2 other kids I am physically exhausted. (yes, this is going to be a bitch

session for me....continue reading if you dare!) So, where do I begin...well,

about 5 weeks ago was diagnosed w/ a pneumonia which they feel is an

aspiration one. We managed to avoid the hospital and he was pn meds out the

wazu. But here we are with the same ole' wheezing going on and he's even

short of breath. He's been spending time on the bipap as a result. Now, keep

in mind his malacia, according to bronchs, has been resolved. So I brought

him for another x-ray today and it still shows infiltrates in the right lobe

but they need to get the other films to compare to. My pulmonologist is set

strong in her ways that he is chronically aspirating his saliva. Now, maybe

I'm ion denial, but I feel in my gut that this is not the case. The robinul

has his secretions to the upmost minimal and if he does break thru we stick

him on bipap to blow it out his nose. But, we haven't needed to do that. Last

fall, before the robinul, he produced so much that we suctioned him200x/day -

he was a river and it took him being like that for 4 months before he finally

had an aspiration pneum. During that " river " time he wasn't wheezing either.

This is why I don't think he's aspirating saliva. The doc wants to put a

cuffed trach in him as a trial for 6 months to see if there is any

improvements. I have mahaged to dodge it b/c I don't think it'll make a

difference plus which the ent agrees with me. So, what else could be going

on????? Every waking minute I am trying to figure him out. Could the robinul

dry his lungs too much (as some have mentioned) that he's having

microplugging thus causin g the atilectisis? I had 2 solid months on the

robinul where he was wheeze/short of breath free. Oh, I am just so

frustrated. Then to boot, the neurologist office called to reschedule the

appt. next week. I was so anxious for this appt. as I would be getting a lot

of answers. Now I won't be getting in until the end of the month.

As I read Sandi's post I remenber those awful days in the beginining and am

glad has progressed so well. But I can't help but to feel discouraged at

the moment. No one seems to have answers for me. And my Ped. (who I have a

good rapport w/) said " Boy am I glad I'm not in your position right now "

regarding all that's going on. Thanks alot you insensitive @$#!***@@!!!!!!!!

But I guess she's one of the few who can admit she just doens't have

figured out.

Well, that's all for now. I know my phone is going to ring and I will get

bumped off this and lose this post to you all, and I have no energy to

re-write. Thanks for listeneing.

Betsy, 7, kevin 5, kyle 2 charge, wife to a husband who works late too

much (but is a wonderful, dedicated husband and father)

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