Re: Re: Nikki is no Beverly

[Guest guest]

So... after all the correspondence with Dr. Kastner over the past couple of

days, Plass calls this afternoon to schedule ph for his visit.

This will be our second visit at NIH and our first joining the NOMID study.

With ALL the correspondence, and explanation of ph's history and journey

at NIH... was still UNFAMILIAR with our case. This is UNACCEPTABLE.

As a professional RN who is VERY seasoned (refuse to say old! LOL)....

whenever I made any call to a patient or family member I reviewed the chart

rapidly... for pertinent info. Between that and reading CURRENT emails

should have been on top of this.

Her first remarks sounded as if she rehearsed a play. She stated that Dr.

Goldbach-Mansky and Dr. Kastner would like us to arrive at the clinic on a

Tuesday for testing to begin, continuing on Wed and Thurs. She asked if

ph had ever been sedated and/or had general anesthesia. I said yes. (all

in his chart)... nevertheless she asked if he would remain STILL for a BRAIN

MRI and a BODY MRI. I said .... Are YOU KIDDING>.... he is 6 years

old and the MRI equipment alone will make him squirm.... besides the COLD

temp in the room to keep the machines cooled down and the length of the

procedure. I asked her if she worked with pediatrics prior to this

assignment or if she had children. She refused to answer and I did not push

but that was the most outrageous question ever. (I was a manager of an OP

hospital department where we did an abundant amount of pediatric diagnostic

studies and the question she asked was way off) Of course I was annoyed but

kept my cool. (tried to anyway)

Next she said... when can you come? I said I can come late Feb at the

earliest however due to getting appropriate care for my disabled Mother and

someone to walk my two Standard Poodles... I would prefer March.

We scheduled for March 21, 22, 23.

She was all ready to hang up... saying see you then.

I said please... please wait do not hang up.

I said I NEED to know who the coordinator is from the clinic who will be

scheduling the tests and setting us up at the Children's INN..... and I need

to know who will coordinate our airline tickets. She said... Aren't you

local... you need to drive!

I said to her, I am not local and we were told by Dr. Kastner someone would

contact us to coordinate all of this once YOU set this appointment up. She

then gave me the name and number to a Rhonda Foxworth who is our new

coordinator. She had NO idea during this conversation that ph was a

current patient at NIH already in the Periodic Fever Study and now changing

to NOMID. I cannot Understand any of this as I KNOW I discussed this last

week with her. Her memory is non-existent.

She told me to call the Children's INN myself since we stayed there before

and gave me the number.

She is as cold as ice. If that were me... knowing I am not at all happy with

her performance as a Registered Nurse, I would have MADE SURE I could

answer all questions.

Ughhhhhhh

Anyway... I am happy we have our dates. We should be flying out that Monday

on the 20th I believe and return on the Friday.

Poor kid misses another week of school!

The saga continues.

Thanks for listening....

Wilkes where are you?? Have you gone back with the girls to NIH?? Any

scheduled appointments.

If anyone has an appointment that week please let me know.

Love

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Is she on drugs?? like hello.. I send all correspondence by email to all 3 now..

never to just nikki.. today i sent an email;.. only dr kastner and bev read it

not nickki

RE: Re: Nikki is no Beverly

So... after all the correspondence with Dr. Kastner over the past couple of

days, Plass calls this afternoon to schedule ph for his visit.

This will be our second visit at NIH and our first joining the NOMID study.

With ALL the correspondence, and explanation of ph's history and journey

at NIH... was still UNFAMILIAR with our case. This is UNACCEPTABLE.

As a professional RN who is VERY seasoned (refuse to say old! LOL)....

whenever I made any call to a patient or family member I reviewed the chart

rapidly... for pertinent info. Between that and reading CURRENT emails

should have been on top of this.

Her first remarks sounded as if she rehearsed a play. She stated that Dr.

Goldbach-Mansky and Dr. Kastner would like us to arrive at the clinic on a

Tuesday for testing to begin, continuing on Wed and Thurs. She asked if

ph had ever been sedated and/or had general anesthesia. I said yes. (all

in his chart)... nevertheless she asked if he would remain STILL for a BRAIN

MRI and a BODY MRI. I said .... Are YOU KIDDING>.... he is 6 years

old and the MRI equipment alone will make him squirm.... besides the COLD

temp in the room to keep the machines cooled down and the length of the

procedure. I asked her if she worked with pediatrics prior to this

assignment or if she had children. She refused to answer and I did not push

but that was the most outrageous question ever. (I was a manager of an OP

hospital department where we did an abundant amount of pediatric diagnostic

studies and the question she asked was way off) Of course I was annoyed but

kept my cool. (tried to anyway)

Next she said... when can you come? I said I can come late Feb at the

earliest however due to getting appropriate care for my disabled Mother and

someone to walk my two Standard Poodles... I would prefer March.

We scheduled for March 21, 22, 23.

She was all ready to hang up... saying see you then.

I said please... please wait do not hang up.

I said I NEED to know who the coordinator is from the clinic who will be

scheduling the tests and setting us up at the Children's INN..... and I need

to know who will coordinate our airline tickets. She said... Aren't you

local... you need to drive!

I said to her, I am not local and we were told by Dr. Kastner someone would

contact us to coordinate all of this once YOU set this appointment up. She

then gave me the name and number to a Rhonda Foxworth who is our new

coordinator. She had NO idea during this conversation that ph was a

current patient at NIH already in the Periodic Fever Study and now changing

to NOMID. I cannot Understand any of this as I KNOW I discussed this last

week with her. Her memory is non-existent.

She told me to call the Children's INN myself since we stayed there before

and gave me the number.

She is as cold as ice. If that were me... knowing I am not at all happy with

her performance as a Registered Nurse, I would have MADE SURE I could

answer all questions.

Ughhhhhhh

Anyway... I am happy we have our dates. We should be flying out that Monday

on the 20th I believe and return on the Friday.

Poor kid misses another week of school!

The saga continues.

Thanks for listening....

Wilkes where are you?? Have you gone back with the girls to NIH?? Any

scheduled appointments.

If anyone has an appointment that week please let me know.

Love

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Wow! I've been reading these " Nikki " posts with amazement! After years of being

given the run around by docs and being poked and probed and pushed around,

trying to find a diagnosis for my son, NIH seemed to be a last haven, a place

where you finally ended up where you received the best care, given by people who

understood what you had been through to arrive there. You were treated

respectfully, thoughtfully, professionally. And then Janet left!

Ever since Beverly took over and then Nikki, things have definitely changed.

At first I thought it was just me...I needed to adjust to the fact that Janet

was gone and I had to adjust to new personalities.

I spoke to Beverly about 4 months ago, very briefly, on the phone. PJ had been

seen at NIH and I wanted to have a copy of his labs sent to me. Janet had always

either mailed them or faxed them after appointments. Well, Beverly immediately

just blasted me! " We cannot send those to you without an authorization in his

chart, and we certainly wouldn't fax them... " and then she just hung up! Never

stopped to ask if we had even signed one of those auths (which I make sure is up

to date everytime we go to NIH), she never offered to send us a copy of the

authorization form, nothing! I was stunned. I never expected that sort of

treatment from anyone at NIH. Plus, she sounded as if she had had every periodic

fever parent call her that day and she had just had enough. I was so upset that

I did not bother calling back right away, but still, I wanted those labs.

I called Nikki a few weeks later, she immediately sent me a copy of the auth

form again, I faxed it back and had a copy of the labs within a few days. I also

later had Nikki check and I had already had a signed auth in his chart. Bev

blasted me without even knowing that.

I called about a month ago, spoke to Nikki to schedule his next appointment.

We are tentatively scheduled for March 9th but she is to call back to tell me

the exact time. She knew that we are within driving distance so we could be

flexible, ...we'll see it she calls back!

Pat Bombardier, mom to PJ, 13yo, Clinical FMF

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

Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.