RE: Need your opinions re hospital stay

October 12, 2003

THEY SHOULD BE CLEANED AFTER EACH USE & AIR DRYED, ~~~~ NOT PUT INTO

PLASTIC BAGS & ZIP LOCKED AS THEY TRIED TO DO ---NO--DID AT THE LOCAL SMALL

HOSPITAL WHEN MY GRANDDAUGTHER WAS IN LAST OCTOBER. HER ONLY TIME IN 19

YEARS.!

ONE OF MY DAUGHTERS TOOK IT OFF THE WALL (in plastic bag) & THRU IT INTO

THE TRASH basket, ALMOST HITTING THE NURSE. They she her that we were

paying for it & to get her a new one with each treatment She said to bring

it with her. She also told her one of us would be there 24 hours to see that

they did ! ...We got her moved to DUKE via ambulance that night. & it was on

Duke's request to bring her to Duke as they were her docs(CF) & would get

her on her feet. They did in 3 days It had been 2 weeks (her appendix had

burst at college. Sorry to go on, BUT STAFF infections is gotten from

hospitals only .....I wonder why??????? I get so MAD. when clinicians tell

me something like that . it isn't just medical -ITS COMMON SENSE. Why not

" over kill germs " if possible!!

For someone with out CF , I don't know for sure. I cant help but think it

should be rinsed out. We don't even use same neb for Pulmozyme as for

anything else (albuteral).....That doesn't make sense NOT to CHANGE. They

aren't that expensive & they buy in bulk. AND WE PAY FOR IT ANYWAY!!!

sorry . your one question should have a simple answer-----CHANGE THE NEBS

AND/OR WASH THEM ..

lOVE & HUGS,

GRANDMOMBEV

Need your opinions re hospital stay

Hi all,

I haven't posted anything here in quite some time, but I have been

lurking and reading hehehe.

I need your opinions folks. My daughter, 14 y/o wcf, is currently

in the hospital for pneumonia, this is day 12. She was previously

treated for this same pneumonia back in April 03. She was released

after 10 days of IV antibiotic and we were told that the pneumonia

was completely cleared. When we returned to clinic 3 wks after

hospital stay, we found that the pneumonia was there (whether it be

again or still, I have no idea). Anyway that is not really my issue

and please forgive me if I rant but I am so frustrated at this point

I want to scream.

The issue is regarding her nebulized meds. She is currently on 5

aerosol masks/day (two of which are Tobi). If I am not at the

hospital when her aerosols are brought in by Respiratory, the

medicine is put in the same neb cup that was used for the previous

aerosol, the neb cup and mask are NOT cleaned between uses!!! At

home, neb cups and masks are washed thoroughly between EACH use and

sterilized every other day. When I spoke with the nurses and the

nurse manager for this unit, I was told that it is their policy to

replace the masks once weekly and they are not required to clean

them between uses.

Could you folks please let me know what protocol you use as far as

neb cleaning, how often etc.......as well as the policy on this in

the hospitals in your area? I'm at my wits end here. They are

acting like I am completely off my rocker because I want these

cleaned or replaced between uses.

Thanks guys

And I do apologize for going on like this.

Tammy

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

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.

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

October 12, 2003

Thank you Grandmombev

At least I know that I am not crazy. They get really upset with me

because everytime I go in I take the nebs off the wall and throw

them in the garbage so they HAVE to put out new ones.

I'm on my way back up there now, have to bring her lunch up. She's

lost close to 4lbs during this stay and they had the nerve to send

someone in to talk to me about her diet and eating habits!! Well

she lost the weight while IN HOSPITAL, she always maintains her

weight while at home. I think the fact that she is losing weight

while in the hospital simply reaffirms the fact that the

rethermalized food that they serve in our hopital is NOT all it's

cracked up to be.

Have a great day

Tammy

>

> THEY SHOULD BE CLEANED AFTER EACH USE & AIR DRYED, ~~~~ NOT PUT

INTO

> PLASTIC BAGS & ZIP LOCKED AS THEY TRIED TO DO ---NO--DID AT THE

LOCAL SMALL

> HOSPITAL WHEN MY GRANDDAUGTHER WAS IN LAST OCTOBER. HER ONLY TIME

IN 19

> YEARS.!

>

> ONE OF MY DAUGHTERS TOOK IT OFF THE WALL (in plastic bag) & THRU

IT INTO

> THE TRASH basket, ALMOST HITTING THE NURSE. They she her that we

were

> paying for it & to get her a new one with each treatment She said

to bring

> it with her. She also told her one of us would be there 24 hours

to see that

> they did ! ...We got her moved to DUKE via ambulance that night. &

it was on

> Duke's request to bring her to Duke as they were her docs(CF) &

would get

> her on her feet. They did in 3 days It had been 2 weeks (her

appendix had

> burst at college. Sorry to go on, BUT STAFF infections is gotten

from

> hospitals only .....I wonder why??????? I get so MAD. when

clinicians tell

> me something like that . it isn't just medical -ITS COMMON SENSE.

Why not

> " over kill germs " if possible!!

> For someone with out CF , I don't know for sure. I cant help but

think it

> should be rinsed out. We don't even use same neb for Pulmozyme as

for

> anything else (albuteral).....That doesn't make sense NOT to

CHANGE. They

> aren't that expensive & they buy in bulk. AND WE PAY FOR IT

ANYWAY!!!

> sorry . your one question should have a simple answer-----CHANGE

THE NEBS

> AND/OR WASH THEM ..

>

> lOVE & HUGS,

> GRANDMOMBEV

>

> Need your opinions re hospital stay

>

> Hi all,

>

> I haven't posted anything here in quite some time, but I have been

> lurking and reading hehehe.

>

> I need your opinions folks. My daughter, 14 y/o wcf, is currently

> in the hospital for pneumonia, this is day 12. She was previously

> treated for this same pneumonia back in April 03. She was released

> after 10 days of IV antibiotic and we were told that the pneumonia

> was completely cleared. When we returned to clinic 3 wks after

> hospital stay, we found that the pneumonia was there (whether it be

> again or still, I have no idea). Anyway that is not really my

issue

> and please forgive me if I rant but I am so frustrated at this

point

> I want to scream.

>

> The issue is regarding her nebulized meds. She is currently on 5

> aerosol masks/day (two of which are Tobi). If I am not at the

> hospital when her aerosols are brought in by Respiratory, the

> medicine is put in the same neb cup that was used for the previous

> aerosol, the neb cup and mask are NOT cleaned between uses!!! At

> home, neb cups and masks are washed thoroughly between EACH use and

> sterilized every other day. When I spoke with the nurses and the

> nurse manager for this unit, I was told that it is their policy to

> replace the masks once weekly and they are not required to clean

> them between uses.

>

> Could you folks please let me know what protocol you use as far as

> neb cleaning, how often etc.......as well as the policy on this in

> the hospitals in your area? I'm at my wits end here. They are

> acting like I am completely off my rocker because I want these

> cleaned or replaced between uses.

>

> Thanks guys

> And I do apologize for going on like this.

>

> Tammy

>

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

> 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.

>

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

>

October 12, 2003

Tammy,

What about home IV's. I've heard a lot of parents here say that they do them

and atleast that way you know her neb cups are cleaned, and maybe she could also

get her weight back up.

Katy

Mom to Austin 4 no CF & Piper 15 months w/CF

October 12, 2003

SUPER IDEA!! I think many folks will agree. the worst place to be if sick

is hospital -----just kidding, but really .They need a BIG lesson in

infection control. Gosh, they don't want folks to get together at camps

(outdoors) or at support meetings. WHAT ABOUT HOSPITAL COMPLIANCE with

cleaning & gloves, etc!!!

CF FOLKS immune systems aren't like others----DUH!!!

Love & Hugs, Grandmombev

who is really on a tangent about this .

I could just scream all kinds of obscenities!!!#$%^ & * & ^%$#@#$%^ & * & all the

others I haven't learned yet!!

Re: Re: Need your opinions re hospital stay

Tammy,

What about home IV's. I've heard a lot of parents here say that they do

them and atleast that way you know her neb cups are cleaned, and maybe she

could also get her weight back up.

Katy

Mom to Austin 4 no CF & Piper 15 months w/CF

October 12, 2003

I figure my insurance company and I are paying for durable goods (neb

cups) in the hospital, so if I want a new set and I'm willing to pay

for it, then the hospital should comply despite whatever ridiculously

unsafe policy they have in place.

Staph germ counts can double within 24-hours. I don't think any of us

are willing to take that risk, or risk any other organisms. So

if you can't get the respiratory therapy staff to provide you

with a new set each time, then either bring your own mask and cups

from home and teach your 14-year old daughter how to say " No, " when

someone hands her a previously used mask and neb cup.

The last time my son was in the hospital (1996), I was surprised to

see the RT hung the morning neb cup in a plastic bag on the wall. I

asked why she didn't throw it out, and she said they'd need it for the

evening treatment. I cringed at the thought of that icky, sticky cup

hanging in a room-temp plastic bag all day.

I'm not a violent as Grandmom Bev's family (hah!), and I guess I'm

sneakier. Instead of throwing the neb cup at the nurse, every morning

after 's treatment, afer the RT left, I'd take the bag, stuff it

into my purse, and throw it out when I got home. Every night, another

RT would arrive and grumble because the morning RT " must have lost the

neb cup again! "

Trash bins are our friends...

Kim

October 12, 2003

Your right Kim , BUT --that was my daughters doing that..they are

nice:):)..I would have wrapped them around her neck-

Then asked her how it felt to have a hard time breathing :)

Gee, I am getting really GOOD AT THIS MEAN STUFF. jUST DON'T BOTHER My KIDS

OR GRANDKIDS ------HEHEHE. eeeeeeeeeee

Do you think they will commit me -you know, those men in the white suits??

Just you all pray ERIN doesn't go into that hospital again in my

lifetime:):)

YES, when I got there -that was the day we moved her over to DUKE-a 3 hour

ambulance drive!!

It was asked as a question to go . I just said she would GO where they can

care for her Duke set

the transfer up.

She got excellent care there. ...AND, they had a ball with my daughters &

ERIN. They called my daughters the GOLDEN GIRLS & would come to the room

to hang out , they were so much fun. ERIN wrote a note to maintaince asking

for gas masks once she had her first loosening.....it was so funny. they

didn't understand getting a request like that from a patient. The whole

floor was hysterical-She told them it was for THEIR health reasons.

I actually think we made ERIN laugh the " crap " out of her ......hehehe, (no

, not really---they stopped the morphine the dingbats at the other hospital

(??) kept giving her -that closed her bowels.

Also , put a picc line in 13 cc too high YES....BELIEVE IT . and in the room

, not certified RN/tech. & no radiology !!! Duke was fit to be tied. The

nurse in ER took it out 10 cm & they took her up to

radiology & took down 3 more cm..

YES----- I am still all fired up about it & it happened last

OCTOBER.............YES, I do hold a grudge :)

Anyway, I could go on & on & on .But wont. the stories they keep telling me

just break me up now that it is over. It doesn't seem possible.

We all have some great " humor " stories on the lists. I kept a bunch from my

early years on line & titled them " HORROR STORIES!. what ones do you have?

LOVE & HUGS,

grandmomBev ,

who is waiting for my friends to come pick me up . hehehe

Re: Need your opinions re hospital stay

I figure my insurance company and I are paying for durable goods (neb

cups) in the hospital, so if I want a new set and I'm willing to pay

for it, then the hospital should comply despite whatever ridiculously

unsafe policy they have in place.

Staph germ counts can double within 24-hours. I don't think any of us

are willing to take that risk, or risk any other organisms. So

if you can't get the respiratory therapy staff to provide you

with a new set each time, then either bring your own mask and cups

from home and teach your 14-year old daughter how to say " No, " when

someone hands her a previously used mask and neb cup.

The last time my son was in the hospital (1996), I was surprised to

see the RT hung the morning neb cup in a plastic bag on the wall. I

asked why she didn't throw it out, and she said they'd need it for the

evening treatment. I cringed at the thought of that icky, sticky cup

hanging in a room-temp plastic bag all day.

I'm not a violent as Grandmom Bev's family (hah!), and I guess I'm

sneakier. Instead of throwing the neb cup at the nurse, every morning

after 's treatment, afer the RT left, I'd take the bag, stuff it

into my purse, and throw it out when I got home. Every night, another

RT would arrive and grumble because the morning RT " must have lost the

neb cup again! "

Trash bins are our friends...

Kim

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

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.

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

October 12, 2003

Hi Katy,

I've asked the Doctor about home IV's previously and he doesn't seem

to like the idea very much. I'm not sure why......but after this

fiasco (which I must add is a repeat performance of her last stay in

April 04, at which time I Voiced...very loudly!! my concern over the

neb cups being re-used, you can rest assured that the next time the

doc wants her hospitalized, I will be fighting to do it at home! At

least I know that everything here is cleaned properly.

I want to thank you all for re-affirming what I already knew to be

correct, but had started to doubt myself after everyone telling me

there was no harm in re-using the cups. My daughter disposes of the

neb cups after each use, and I have told her that if they have an

issue with that she can tell them to find me. I'm usually not far.

I also want to thank you all for allowing me to have a place to vent

my frustrations here.....at least you folks all understand what

living with a Chronic illness is like......which sadly enough,

cannot be said for the hospital staff here. One of the nurses told

me that my daughter was saucy and had an attitude because she kept

rolling out of position during therapy and did not seem to be very

happy about being in the hospital.....well DUHHHHHHHH!!!!!!!!!!!

We're home right now on a 4hr pass, so I best be getting her supper

cooked to see if I can fatten her back up hehehe

Have a great day!

Tammy

> Tammy,

>

> What about home IV's. I've heard a lot of parents here say that

they do them and atleast that way you know her neb cups are cleaned,

and maybe she could also get her weight back up.

>

> Katy

> Mom to Austin 4 no CF & Piper 15 months w/CF

>

October 12, 2003

OMG - thats gross!!!!!!!!!!!!!!!!!!! Can't your CF Dr. intervene!!!!!!!!!!!!

At our Hospital we got new............once opened thrown out.........

October 12, 2003

Hi Tammy,

I am sorry to hear that your daughter is in again.

I have always been told that the the meds can't all go in the same set ups in

case there is any residue left behind from the meds. When was in we had

one set up for the Albuterol and Cromolyn and another separate set up for the

Pulmozyme. These were the only ones she was on in the hospital. When she was

on the Tobi she would go off of it as soon as she was in the hosp. because they

would put her on IV Tobramycin and they didn't want her to get too much. I

stayed with her the whole time she was in every time she was in and the nurses

at CHOP were very conscientious about putting the meds in the right cup and not

mix them up when they set up her neb treatments. We marked the one set with a

blue indelible ink pen with a big P for Pulmozyme so it wasn't confusing. And

since I stayed with her I cleaned everything out after every use.

wouldn't let them give her a treatment anyway. They changed her whole set up

every week but didn't sterilize it at all. I only sterilize 's once a

week at home, but I clean them after every use. I was told that this was

sufficient for the nebs. I hope this helps!

Maybe your daughter can tell the people who are doing her nebs that they are

supposed to be in different cups and tell her to refuse them if they are not

done the right way.