CF: Tune-ups, Masks, Cross infection, Idiots, Synergy and Norma!

[Guest guest]

Hi all!

I haven't been very active but I am glad you are all out there when needed!

I am here too! I wrote last week about my daughter's first tune-up. Most of

the experience was very positive. But a couple of things happened that I

wanted to discuss.

First off, we all know that cross-infection control has changed a lot

(especially since we haven't been in the hospital since Patty's surgery in

spring of '98). The kids on our ward all had to wear masks when they left

their rooms. They were all pretty good about it but still a little clueless

about other things but these were young kids. Patty is 12 but the others

were 5, 6 and 8. These were really great kiddos.

They all bonded fast and hung out all day long. This led to a couple of

" incidents " . Once, the kids went to the 3rd floor playroom and were kicked

out because they thought the kids were in isolation! Our nurses had our 4th

floor volunteers take care of that! They questioned us again, at a different

occasion but two of us moms were there and took care of that.

Another time, my family went down to the cafeteria for dinner with Patty.

Bob, my husband, was paying for our meals while Patty waited to have hers

" rung " up (she had unlimited cafeteria privileges). I walked away with our

trays of food following my other two children. Patty, wearing a mask,

coughed. The cashier flung up both hands as if acid was being flung in his

face!

When my husband caught up with me, he told me what happened. Needless to

say, I marched right back up to the cashier. I told him that Patty has

Cystic Fibrosis and he cannot catch it. I told him that she wears a mask

around others with CF or in the general hospital population so YOU don't make

HER sicker. He kind of said " oh " . I then said things are difficult enough

for her, thank you very much! He apologized profusely. He also couldn't be

more helpful to me and the other mom from then on!! Can you say Major Butt

Kissing?

Another " incident " happened during " Beanie Baby Bingo " . We were all having

fun. (the other mom with a kid with CF) and I were watching over

three families (hers, mine, and two sisters). They all sat nearby but at

separated tables, masks on! I walked away for some reason, and heard in

passing from another table " SARS " . I kept going to do whatever it was.

heard this mom loudly talking to her children about SARS and

referencing our little group. went off on her: politely, firmly,

but mother bearish!

Is this common? I can't imagine what it must be like for people with b.

cepacia too. It really blew my mind! I know people can be insensitive but

we are talking about little kids here! I can handle the looking or staring,

and I don't mind polite questions. But the over the top reactions?!? For

gosh sakes! We were in a hospital!!!! DUH!

The last thing I have is more of a question. The ward that the pwcf use is

called the CRC ward. The rooms are private but two rooms share one bathroom.

They supposedly try not to have people with CF in these adjoining room. They

like to keep only 4 pwcf on the ward but by the last few days we had 7 (two

were the sisters so they could share). Patty ended up sharing a bathroom the

last few days with a teen with CF. We were told that it was okay because they

would clean the bathroom three times a day. The teen and I made a pact to

monitor this. The next day we were told the protocol was only to clean 2

times a day. The teen and I didn't see anyone clean until after 2 p.m. on

our discharge day! Neither of us saw them clean the day before at all! Now

maybe we missed ONE cleaning, but two?? BTW, they leave the toilet water

blue so it is obvious.

So, my question(s): does anyone know what is protocol? Does anyone else have

this set up? How does your hospital handle this? What do you all think?

Lastly, I have to really give major thanks to Norma! I have used your

website for years now. I have learned to go there first! If I need to know

something, I will virtually always find it on Norma's site! I can't tell you

how many times I have sent the link to others. I also made sure that CFRI

had it in their internet book!! I mention it because, I used it twice since

Patty's hospitalization. I used it to look up her IV meds. And again today,

to look up synergy studies. Sure enough, there it was! AND, the exact site

Patty's stuff was sent to! I can't thank you enough for the awesome service

you continue to maintain for our community! You are a special person!

Thanks!

Carol

mom of 3 (2wcf)