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Details -- What the heck happened?



 
 
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  #1  
Old June 28th 04, 08:24 AM
Allaya Diep
external usenet poster
 
Posts: n/a
Default Details -- What the heck happened?

Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you
can imagine, it's a really long, weird story.

We're finally back from the hospital. We were discharged last Friday...what
an ordeal! We went in on June 2nd for a pretty routine pH study to monitor
Lainey's GERD. While doing an x-ray of her abdomen to check the placement of
the pH probe in her stomach, they noticed that one lung was larger than the
other. Upon further scanning, they found a pretty sizable mass in her chest,
not really attached to anything, just floating somewhere between her trachea
and esophagus. Unfortunately for Lammy, the mass was totally obstructing one
of her bronchial tubes, so she was breathing essentially with only one lung.

They sprang into action pretty quickly over there at CHOC, which is the one
good thing I can say about it I guess...over the next few days, poor Lammy
went through a tracheoscopy and a full on biopsy in which the surgeon had to
cut into her chest and pull out part of the mass. After the mass was
partially extracted, I don't think I'm exaggerating when I say that I was
visited by about 8 different specialists talking to me about all manner of
things from disease this and cancer that. Bleh.

Finally, the diagnosis was made, and I was visited by Infectious Disease who
told me it was Tuberculosis. This came as a bit of a shock to me since Lammy
was never outwardly sick...no fever, no coughing, no sneezing...not even so
much as a sniffle. Her lungs on top of that were perfectly clear. I thought
he was full of it and I told him so. I asked what made him think it was TB,
and he pointed out that Lammy had a positive skin test. Yeah, well so do 1/3
of all Americans, but that doesn't mean that thy all have TB. Then he went
into some mumbling mode and excused himself because he had a cold. I asked
the other residents who visited why they thought she had TB, and they all
said, "because it couldn't be anything else." I hate it when people treat
you like you're stupid. :P

Finally, I got to the bottom of it sort of when Lainey's pediatrician came
to visit. She was understandably very concerned as to what was going on. She
looked through Lammy's charts with me and said that they thought it was TB
because of some granulomas they found in the biopsy. I asked her if these
granulomas only occurred in TB cases, and after consulting with some other
doctors, she told me apparently yes. From a purely logical perspective
though, this was the most illogical diagnosis they could have made because
according to Infectious Disease's own admission, it's impossible to develop
TB disease unless you are regularly exposed to somebody with the
disease...and out of my own germaphobic lifestyle, Lammy has only been
exposed, to me, Adam, and her grandfather...none of whom have TB.

Regardless of my protests, they stuck Lammy on the hell that is TB
medication. She had to take four different antibiotics, all of which made
her extremely nauseous. One in particular would cause her to throw up every
day, and she dreaded seeing the nurses every day. She would curl up under my
arm and cry until they went away. We were put in isolation where nobody
could come in or out without a mask...and later I found the nurses were
keeping people out in general simply because they didn't want to bother with
telling people to put on masks. Evil nurses. Grrrr

We were released on Friday, as I said earlier, and put in the care of the
Public Health Department, who would not trust me to give Lammy her medicine
every day...no, they insisted on coming over three times a day to give the
meds to her themselves. This put a damper on things because that would
basically mean that I couldn't leave the house for more than a few hours at
a time, which made it absolutely impossible to do any errands. Meanwhile,
Lammy's liver enzymes started shooting up, and to avoid the risk of giving
her full-blown hepatitis, the ID doctor order her to stop her medication
over the weekend and to resume on Tuesday after she'd take another blood
test.

We stopped over the weekend, and got some more blood drawn on Monday.
Tuesday morning, I get a call from the ID office frantically telling me not
to give Lammy any more medicine. I get a phone call later on that day
telling me not to give her any more medicine for the next week, until next
Thursday. I asked why, and the nurse told me that their initial diagnosis
was incorrect, and that Lammy didn't have TB after all, but that the doctor
was overrun with patients (the other docs in his practice were out on
vacation and left him alone) and that he would explain as soon as he could.

So that's where I am now...I'm angry and happy at the same time. Hate to
tell them "I told you so," but...you know.

I'm pretty exhausted and Lammy is severely traumatized from the whole
hospital stay. I hope she recovers soon. I think she's worse coming out of
the hospital than she ever was going in, poor thing.



--Allaya


Ads
  #2  
Old June 28th 04, 01:31 PM
Katherine
external usenet poster
 
Posts: n/a
Default

Good heavens, Allaya, what a horrid experience for you AND poor little
Lammy! DO they know what her problem is yet? Please keep us posted, and give
Lammy a big hug from me.

Hugs,
Katherine


  #3  
Old June 28th 04, 01:41 PM
Peggy
external usenet poster
 
Posts: n/a
Default

Poor kid! I hope they get to the bottom of it and figure out what it really
way.
Now, I'm still fairly new here. Lurk more than I post. Am I correct in
assuming Lammy and Lainey are the same person and is your daughter? How old
is she?
~Peggy

"Allaya Diep" wrote in message
news:[email protected]
Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you
can imagine, it's a really long, weird story.

We're finally back from the hospital. We were discharged last

Friday...what
an ordeal! We went in on June 2nd for a pretty routine pH study to monitor
Lainey's GERD. While doing an x-ray of her abdomen to check the placement

of
the pH probe in her stomach, they noticed that one lung was larger than

the
other. Upon further scanning, they found a pretty sizable mass in her

chest,
not really attached to anything, just floating somewhere between her

trachea
and esophagus. Unfortunately for Lammy, the mass was totally obstructing

one
of her bronchial tubes, so she was breathing essentially with only one

lung.

They sprang into action pretty quickly over there at CHOC, which is the

one
good thing I can say about it I guess...over the next few days, poor Lammy
went through a tracheoscopy and a full on biopsy in which the surgeon had

to
cut into her chest and pull out part of the mass. After the mass was
partially extracted, I don't think I'm exaggerating when I say that I was
visited by about 8 different specialists talking to me about all manner of
things from disease this and cancer that. Bleh.

Finally, the diagnosis was made, and I was visited by Infectious Disease

who
told me it was Tuberculosis. This came as a bit of a shock to me since

Lammy
was never outwardly sick...no fever, no coughing, no sneezing...not even

so
much as a sniffle. Her lungs on top of that were perfectly clear. I

thought
he was full of it and I told him so. I asked what made him think it was

TB,
and he pointed out that Lammy had a positive skin test. Yeah, well so do

1/3
of all Americans, but that doesn't mean that thy all have TB. Then he went
into some mumbling mode and excused himself because he had a cold. I asked
the other residents who visited why they thought she had TB, and they all
said, "because it couldn't be anything else." I hate it when people treat
you like you're stupid. :P

Finally, I got to the bottom of it sort of when Lainey's pediatrician came
to visit. She was understandably very concerned as to what was going on.

She
looked through Lammy's charts with me and said that they thought it was TB
because of some granulomas they found in the biopsy. I asked her if these
granulomas only occurred in TB cases, and after consulting with some other
doctors, she told me apparently yes. From a purely logical perspective
though, this was the most illogical diagnosis they could have made because
according to Infectious Disease's own admission, it's impossible to

develop
TB disease unless you are regularly exposed to somebody with the
disease...and out of my own germaphobic lifestyle, Lammy has only been
exposed, to me, Adam, and her grandfather...none of whom have TB.

Regardless of my protests, they stuck Lammy on the hell that is TB
medication. She had to take four different antibiotics, all of which made
her extremely nauseous. One in particular would cause her to throw up

every
day, and she dreaded seeing the nurses every day. She would curl up under

my
arm and cry until they went away. We were put in isolation where nobody
could come in or out without a mask...and later I found the nurses were
keeping people out in general simply because they didn't want to bother

with
telling people to put on masks. Evil nurses. Grrrr

We were released on Friday, as I said earlier, and put in the care of the
Public Health Department, who would not trust me to give Lammy her

medicine
every day...no, they insisted on coming over three times a day to give the
meds to her themselves. This put a damper on things because that would
basically mean that I couldn't leave the house for more than a few hours

at
a time, which made it absolutely impossible to do any errands. Meanwhile,
Lammy's liver enzymes started shooting up, and to avoid the risk of giving
her full-blown hepatitis, the ID doctor order her to stop her medication
over the weekend and to resume on Tuesday after she'd take another blood
test.

We stopped over the weekend, and got some more blood drawn on Monday.
Tuesday morning, I get a call from the ID office frantically telling me

not
to give Lammy any more medicine. I get a phone call later on that day
telling me not to give her any more medicine for the next week, until next
Thursday. I asked why, and the nurse told me that their initial diagnosis
was incorrect, and that Lammy didn't have TB after all, but that the

doctor
was overrun with patients (the other docs in his practice were out on
vacation and left him alone) and that he would explain as soon as he

could.

So that's where I am now...I'm angry and happy at the same time. Hate to
tell them "I told you so," but...you know.

I'm pretty exhausted and Lammy is severely traumatized from the whole
hospital stay. I hope she recovers soon. I think she's worse coming out of
the hospital than she ever was going in, poor thing.



--Allaya




  #4  
Old June 28th 04, 02:16 PM
Mirjam Bruck-Cohen
external usenet poster
 
Posts: n/a
Default

DEAR ALLAYA anf Laine
H E A L I N G W I S H E S
mirjam

  #5  
Old June 28th 04, 03:31 PM
Janise Ross
external usenet poster
 
Posts: n/a
Default

Allaya,

I am so sorry that you and Lainey have had to go through all this. I
hope that the doctors finally figure out what caused the mass and that
Lainey totally recovers quickly.

Janise


"Allaya Diep" wrote in message
news:[email protected]
Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you
can imagine, it's a really long, weird story.

We're finally back from the hospital. We were discharged last

Friday...what
an ordeal! We went in on June 2nd for a pretty routine pH study to monitor
Lainey's GERD. While doing an x-ray of her abdomen to check the placement

of
the pH probe in her stomach, they noticed that one lung was larger than

the
other. Upon further scanning, they found a pretty sizable mass in her

chest,
not really attached to anything, just floating somewhere between her

trachea
and esophagus. Unfortunately for Lammy, the mass was totally obstructing

one
of her bronchial tubes, so she was breathing essentially with only one

lung.

They sprang into action pretty quickly over there at CHOC, which is the

one
good thing I can say about it I guess...over the next few days, poor Lammy
went through a tracheoscopy and a full on biopsy in which the surgeon had

to
cut into her chest and pull out part of the mass. After the mass was
partially extracted, I don't think I'm exaggerating when I say that I was
visited by about 8 different specialists talking to me about all manner of
things from disease this and cancer that. Bleh.

Finally, the diagnosis was made, and I was visited by Infectious Disease

who
told me it was Tuberculosis. This came as a bit of a shock to me since

Lammy
was never outwardly sick...no fever, no coughing, no sneezing...not even

so
much as a sniffle. Her lungs on top of that were perfectly clear. I

thought
he was full of it and I told him so. I asked what made him think it was

TB,
and he pointed out that Lammy had a positive skin test. Yeah, well so do

1/3
of all Americans, but that doesn't mean that thy all have TB. Then he went
into some mumbling mode and excused himself because he had a cold. I asked
the other residents who visited why they thought she had TB, and they all
said, "because it couldn't be anything else." I hate it when people treat
you like you're stupid. :P

Finally, I got to the bottom of it sort of when Lainey's pediatrician came
to visit. She was understandably very concerned as to what was going on.

She
looked through Lammy's charts with me and said that they thought it was TB
because of some granulomas they found in the biopsy. I asked her if these
granulomas only occurred in TB cases, and after consulting with some other
doctors, she told me apparently yes. From a purely logical perspective
though, this was the most illogical diagnosis they could have made because
according to Infectious Disease's own admission, it's impossible to

develop
TB disease unless you are regularly exposed to somebody with the
disease...and out of my own germaphobic lifestyle, Lammy has only been
exposed, to me, Adam, and her grandfather...none of whom have TB.

Regardless of my protests, they stuck Lammy on the hell that is TB
medication. She had to take four different antibiotics, all of which made
her extremely nauseous. One in particular would cause her to throw up

every
day, and she dreaded seeing the nurses every day. She would curl up under

my
arm and cry until they went away. We were put in isolation where nobody
could come in or out without a mask...and later I found the nurses were
keeping people out in general simply because they didn't want to bother

with
telling people to put on masks. Evil nurses. Grrrr

We were released on Friday, as I said earlier, and put in the care of the
Public Health Department, who would not trust me to give Lammy her

medicine
every day...no, they insisted on coming over three times a day to give the
meds to her themselves. This put a damper on things because that would
basically mean that I couldn't leave the house for more than a few hours

at
a time, which made it absolutely impossible to do any errands. Meanwhile,
Lammy's liver enzymes started shooting up, and to avoid the risk of giving
her full-blown hepatitis, the ID doctor order her to stop her medication
over the weekend and to resume on Tuesday after she'd take another blood
test.

We stopped over the weekend, and got some more blood drawn on Monday.
Tuesday morning, I get a call from the ID office frantically telling me

not
to give Lammy any more medicine. I get a phone call later on that day
telling me not to give her any more medicine for the next week, until next
Thursday. I asked why, and the nurse told me that their initial diagnosis
was incorrect, and that Lammy didn't have TB after all, but that the

doctor
was overrun with patients (the other docs in his practice were out on
vacation and left him alone) and that he would explain as soon as he

could.

So that's where I am now...I'm angry and happy at the same time. Hate to
tell them "I told you so," but...you know.

I'm pretty exhausted and Lammy is severely traumatized from the whole
hospital stay. I hope she recovers soon. I think she's worse coming out of
the hospital than she ever was going in, poor thing.



--Allaya




  #6  
Old June 28th 04, 06:09 PM
NoraBalcer
external usenet poster
 
Posts: n/a
Default

Yes, the two are one in the same. Her name is Lainey and she is not even a year
old yet. Poor little thing has been through so much in her little life.

Hugs,

Nora
  #7  
Old June 28th 04, 06:14 PM
Peggy
external usenet poster
 
Posts: n/a
Default

"NoraBalcer" wrote in message
...
Yes, the two are one in the same. Her name is Lainey and she is not even a

year
old yet. Poor little thing has been through so much in her little life.

Hugs,

Nora


Thanks for the clarification, Nora!
Peggy


  #8  
Old June 28th 04, 06:50 PM
norma woods
external usenet poster
 
Posts: n/a
Default

Good Lord, Allaya! What you and poor Lammy have been going through! I hope
they get their acts together, and get things right from now on. Please let
us know how things are going, and give Lainey a hug for me (and you too!).

--
Star love,
Norma
PM OES
"Allaya Diep" wrote in message
news:[email protected]
Hello dear RCTY-ers....here's an excerpt of a letter I sent to a friend
which details what's been going on. Thanks for all your concern...as you
can imagine, it's a really long, weird story.

We're finally back from the hospital. We were discharged last

Friday...what
an ordeal! We went in on June 2nd for a pretty routine pH study to monitor
Lainey's GERD. While doing an x-ray of her abdomen to check the placement

of
the pH probe in her stomach, they noticed that one lung was larger than

the
other. Upon further scanning, they found a pretty sizable mass in her

chest,
not really attached to anything, just floating somewhere between her

trachea
and esophagus. Unfortunately for Lammy, the mass was totally obstructing

one
of her bronchial tubes, so she was breathing essentially with only one

lung.

They sprang into action pretty quickly over there at CHOC, which is the

one
good thing I can say about it I guess...over the next few days, poor Lammy
went through a tracheoscopy and a full on biopsy in which the surgeon had

to
cut into her chest and pull out part of the mass. After the mass was
partially extracted, I don't think I'm exaggerating when I say that I was
visited by about 8 different specialists talking to me about all manner of
things from disease this and cancer that. Bleh.

Finally, the diagnosis was made, and I was visited by Infectious Disease

who
told me it was Tuberculosis. This came as a bit of a shock to me since

Lammy
was never outwardly sick...no fever, no coughing, no sneezing...not even

so
much as a sniffle. Her lungs on top of that were perfectly clear. I

thought
he was full of it and I told him so. I asked what made him think it was

TB,
and he pointed out that Lammy had a positive skin test. Yeah, well so do

1/3
of all Americans, but that doesn't mean that thy all have TB. Then he went
into some mumbling mode and excused himself because he had a cold. I asked
the other residents who visited why they thought she had TB, and they all
said, "because it couldn't be anything else." I hate it when people treat
you like you're stupid. :P

Finally, I got to the bottom of it sort of when Lainey's pediatrician came
to visit. She was understandably very concerned as to what was going on.

She
looked through Lammy's charts with me and said that they thought it was TB
because of some granulomas they found in the biopsy. I asked her if these
granulomas only occurred in TB cases, and after consulting with some other
doctors, she told me apparently yes. From a purely logical perspective
though, this was the most illogical diagnosis they could have made because
according to Infectious Disease's own admission, it's impossible to

develop
TB disease unless you are regularly exposed to somebody with the
disease...and out of my own germaphobic lifestyle, Lammy has only been
exposed, to me, Adam, and her grandfather...none of whom have TB.

Regardless of my protests, they stuck Lammy on the hell that is TB
medication. She had to take four different antibiotics, all of which made
her extremely nauseous. One in particular would cause her to throw up

every
day, and she dreaded seeing the nurses every day. She would curl up under

my
arm and cry until they went away. We were put in isolation where nobody
could come in or out without a mask...and later I found the nurses were
keeping people out in general simply because they didn't want to bother

with
telling people to put on masks. Evil nurses. Grrrr

We were released on Friday, as I said earlier, and put in the care of the
Public Health Department, who would not trust me to give Lammy her

medicine
every day...no, they insisted on coming over three times a day to give the
meds to her themselves. This put a damper on things because that would
basically mean that I couldn't leave the house for more than a few hours

at
a time, which made it absolutely impossible to do any errands. Meanwhile,
Lammy's liver enzymes started shooting up, and to avoid the risk of giving
her full-blown hepatitis, the ID doctor order her to stop her medication
over the weekend and to resume on Tuesday after she'd take another blood
test.

We stopped over the weekend, and got some more blood drawn on Monday.
Tuesday morning, I get a call from the ID office frantically telling me

not
to give Lammy any more medicine. I get a phone call later on that day
telling me not to give her any more medicine for the next week, until next
Thursday. I asked why, and the nurse told me that their initial diagnosis
was incorrect, and that Lammy didn't have TB after all, but that the

doctor
was overrun with patients (the other docs in his practice were out on
vacation and left him alone) and that he would explain as soon as he

could.

So that's where I am now...I'm angry and happy at the same time. Hate to
tell them "I told you so," but...you know.

I'm pretty exhausted and Lammy is severely traumatized from the whole
hospital stay. I hope she recovers soon. I think she's worse coming out of
the hospital than she ever was going in, poor thing.



--Allaya




  #9  
Old June 28th 04, 07:05 PM
NoraBalcer
external usenet poster
 
Posts: n/a
Default

Peggy,

Did you feel the earthquake up there?

Hugs,

Nora
  #10  
Old June 28th 04, 07:14 PM
Peggy
external usenet poster
 
Posts: n/a
Default

"NoraBalcer" wrote in message
...
Peggy,

Did you feel the earthquake up there?

Hugs,

Nora


No, it was too far away. Big one, though!
Peggy


 




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