Re Jennie, Kathy and Ronda

[Guest guest]

Hi,

Jennie, could it be, that the docs and nurses simply don't wanna lose one of

their best customers LOL? With seven kids (and counting) plus maybe some of your

group home patients too, you are an economic factor for the hospital.

Plus we have learned, that some nurses and docs can't stand knowledgable parents

and the more uncertain they feel, the weirder they act.

The very first time we went to our actual hospital (our third trial), we made it

clear, that we can handle the facts and want to know the facts. That they know

the basics about CF, while we know the basics about Fiona and that best results

will be seen, if we work together as a team, open and trustful. I think up to

now nobody has a reason to complain.

Kathy G, I am glad to see you in a better mood now. The mentioning of depression

still hits a soft spot in me and I am at a loss of words. Take all the help you

can get, don't feel guilty about anything and put the money you are earning to

it's best use, be it to hire a maid, buy a ton of chocolate or whatsoever.

Depression is a severe disorder and you have to fight it big time!

Ronda, I can only second Jennie to ask for a doublecheck from another lab. The

lab at Fiona's CF clinic always finds staph in her throat swab, our ped's lab

has not three times. The first time we were happy, the second time we were

sceptical and when it happened again we told them about our

three-and-you're-out-rule. I am convinced our doc's lab has no clue, what they

should do with a CF-culture.

And you got your results so fast, that they can't have done all the special

procedures, which are necessary to verify a cepacia infection. Have you asked

already, which genomovar of cepacia Jess cultures? There are five different

types of cepacia known at the moment, and only very few labs in the world are

able to distinguish them (I assume your lab is not). Then they have to send the

probe somewhere else, you have the second opinion and they have saved their

face.

Bye-bye

Torsten, dad of Fiona 3wcf

e-mail: aberdeen95@...

[Guest guest]

<< Jennie, could it be, that the docs and nurses simply don't wanna lose one

of

their best customers LOL? With seven kids (and counting) plus maybe some of

your

group home patients too, you are an economic factor for the hospital. >>

HMMM, this is def. true for the Pediatrician....but the CF doc only sees the

youngest 3 of my kiddos, hehehe, and he doesn't see any of my group home

patients...(we use the Univ. hospital in town for them...Children's doesn't

like to deal with " them " any more than they have to.....)

Our Ped. used to say that we alone paid his practices overhead, hehehe....

Jen