Re: VENT:Autumn had her upper gi and ph probe...horrible experience

[Guest guest]

Oh . How horrible. I am so sorry you had to go through

that. Sounds like it was beyond frustrating for you. No one should

have to go through what you went through. I hate it when there is

such miscommunication amongst doctors and the rest of the staff.

There is no excuse for you being shuffled around like you were. No

excuse at all. I have had bead experiences, too, so I know where you

are coming from.

I am sorry you and Autumn had such a rough time and I hope it was all

worth it and the tests are conclusive. I don't know what the numbers

mean, but I will tell you this. has severe reflux. I mean,

it is bad. And, it took them almost three years to find it. And,

that is after all the tests....even multiple times. He had the pH

probe I don't know how many times, Endoscopies too many to count, and

even several Delayed Gastric Emptying tests. None showed his

reflux. Which, I find hard to believe. The latest pH probe in NY

was the best, but they said the numbers weren't high enough to say he

had reflux! UGH. Then, he had one more DGE and he threw EVERYTHING

up immediately, but luckily they had the camera going and they saw

the reflux and how bad it was! FINALLY! So, you have to take these

results, but go with what your gut is telling you. I told them when

was 2 months old that he was having reflux! UGH! And, I kept

saying it, just no one was listening! Typical.

Take care,

Jodi R.

>

> Hi. We got back yesterday from Autumn's studies, they were an

> absolute nightmare. We were there by 10:30 and got admitted then

> went to radiology for the probe. 2.5 hours later at 1 it got put

in

> over 2 hours late. Then they had problems with the room and

> transport to take us there, we were sent out to the waiting room

for

> a 'couple' of minutes. Autumn was screaming, gagging, vomiting

spit

> and mucous, drooling and we were in the waiting room! WE should

have

> been in the hospiatal room by then! Then 15 minutes passed, I went

> up to the desk adn they made phonecalls and then I was told the

room

> wouldn't be ready until 1:45 although it should have been ready at

> 10! Then transport never came. Autumn was still gagging and

vomitin

> and dripping wet with drool, she was too scared to swallow so her

> mouth was hanging open and by now summer was hungry and just

> screaming. I went up and said I needed a supervisor now, then I

just

> started to cry. Now I am not a crier, especially in public so it

was

> horrible. Finally a manager came and after about 15 more minutes

> later we were taken to a room but not in the place we originnaly

had

> a room reserved. We get up there I demand she drinks something

(she

> wouldn't immediatly after the probe but was thirsty) they tried

> saying no because her recording box wasn't hooked up yet but I said

> it had been hours since she had anything so they need to come up

now

> or she will drink! So she got a drink adn finally by 3 they

hooked

> the box up for recording. The probe was then loose around the nose

> (it was tape\d on the cheek) and no one could figure how to tape it

> right up there and keep it from moving so it made her gag and they

> kept tryign and didn't kow what to do. I ended up having to tell

> them to use one of those things that are used to keep oxygen tubes

in

> place, this was done at 10 p.m.

> Doctors were coming in and asking why is she having this done? Why

> did a surgeon order it and not a gi doctor? Why are we here? I

was

> asked this numerous times over the visit. There was constant

> misinformation and I kept being passed off to the next person. I

was

> told they would be back at 9 to take out the probe adn by 9:30 next

> morning no one came. Finally someone found out I was supposed to

> call some number to let them know when she had last ate and they

> would be there 2 hours later. I had another manager come and

> everything was just a big mess. No one told me anythign, no one in

> this wing knew about probes, it turns out the original place we

were

> told we were staying that morning was the place these tests were

> done, so they were clueless here. I was also told to push the

button

> during her eating and crying/ gagging but they failed to mention

push

> it 2 times to hear the beep, I realized this later on that night

> after a problem so a lot of stuff at first was not recorded.

>

> Then came the upper gi after the probe was out. We got in on time

> but over 1 hour of 3 people and me trying and we could not get

Autumn

> to drink any barium out of a bottle, cup/straw, syringe, some

strange

> contraption they made didn't work, they added chocolate to

> it....nothing, a couple of drops got down her throat so she threw

it

> up. Finally they needed to ng tube her to give her barium. The

> whole experience was a nightmare.

>

> I was advised by the manager in radiology to file a complaint

with

> the hospital about the problems with the probe and room. I will be

> doing that soon.

>

> Thanks for listening.

>

> mom to Autumn 20.5 mos RSS, Summer, Ocean, Skye

>

[Guest guest]

hi katherine!!

i am so sorry you had to and autumn had to go through such a horrible

experience!! ((HUGS))

jodie c

[Guest guest]

! Oh my - how horrible of an experience for you all to go

through! I am so sorry!!!! What hospital were you at?? That is

absolutely, positively unacceptable. You are a trooper. I would

have walked out and made the necessary arrangements to move the

appointment another time until they had their act together. I'm so

sorry this happened to you!! HUGS and thought with you. I would

definately make sure you have a formal complaint in writing. I

would be happy to help you with it - you let me know - I'm a an

absolute great writer - I have that background. Send me a private e-

mail if you want and you can send me the details and I would be

happy to do this.

Hugs to you. You poor dear. How is Autumn today? Give her lots of

love and hugs from us too. Okay? Keep us/me posted.

- H

>

> Hi. We got back yesterday from Autumn's studies, they were an

> absolute nightmare. We were there by 10:30 and got admitted then

> went to radiology for the probe. 2.5 hours later at 1 it got put

in

> over 2 hours late. Then they had problems with the room and

> transport to take us there, we were sent out to the waiting room

for

> a 'couple' of minutes. Autumn was screaming, gagging, vomiting

spit

> and mucous, drooling and we were in the waiting room! WE should

have

> been in the hospiatal room by then! Then 15 minutes passed, I

went

> up to the desk adn they made phonecalls and then I was told the

room

> wouldn't be ready until 1:45 although it should have been ready at

> 10! Then transport never came. Autumn was still gagging and

vomitin

> and dripping wet with drool, she was too scared to swallow so her

> mouth was hanging open and by now summer was hungry and just

> screaming. I went up and said I needed a supervisor now, then I

just

> started to cry. Now I am not a crier, especially in public so it

was

> horrible. Finally a manager came and after about 15 more minutes

> later we were taken to a room but not in the place we originnaly

had

> a room reserved. We get up there I demand she drinks something

(she

> wouldn't immediatly after the probe but was thirsty) they tried

> saying no because her recording box wasn't hooked up yet but I

said

> it had been hours since she had anything so they need to come up

now

> or she will drink! So she got a drink adn finally by 3 they

hooked

> the box up for recording. The probe was then loose around the

nose

> (it was tape\d on the cheek) and no one could figure how to tape

it

> right up there and keep it from moving so it made her gag and they

> kept tryign and didn't kow what to do. I ended up having to tell

> them to use one of those things that are used to keep oxygen tubes

in

> place, this was done at 10 p.m.

> Doctors were coming in and asking why is she having this done?

Why

> did a surgeon order it and not a gi doctor? Why are we here? I

was

> asked this numerous times over the visit. There was constant

> misinformation and I kept being passed off to the next person. I

was

> told they would be back at 9 to take out the probe adn by 9:30

next

> morning no one came. Finally someone found out I was supposed to

> call some number to let them know when she had last ate and they

> would be there 2 hours later. I had another manager come and

> everything was just a big mess. No one told me anythign, no one in

> this wing knew about probes, it turns out the original place we

were

> told we were staying that morning was the place these tests were

> done, so they were clueless here. I was also told to push the

button

> during her eating and crying/ gagging but they failed to mention

push

> it 2 times to hear the beep, I realized this later on that night

> after a problem so a lot of stuff at first was not recorded.

>

> Then came the upper gi after the probe was out. We got in on time

> but over 1 hour of 3 people and me trying and we could not get

Autumn

> to drink any barium out of a bottle, cup/straw, syringe, some

strange

> contraption they made didn't work, they added chocolate to

> it....nothing, a couple of drops got down her throat so she threw

it

> up. Finally they needed to ng tube her to give her barium. The

> whole experience was a nightmare.

>

> I was advised by the manager in radiology to file a complaint

with

> the hospital about the problems with the probe and room. I will

be

> doing that soon.

>

> Thanks for listening.

>

> mom to Autumn 20.5 mos RSS, Summer, Ocean, Skye

>

[Guest guest]

Wow!

I can't imagine what that must have been like. As if it's not bad enough to

go through that kind of testing, without complete incompetence surrounding you.

I'm so sorry to hear that, it's so hard to watch our babies go through anything

so hard and trying anyway. That reminds me of my first bad experience with

doctors after Dasia was born. Since my first ultra sound, we knew she was SGA,

then when she was born, we had a doctor (not ours) that was on call, who, 2

minutes after examining Dasia right after delivery came over to my bed to tell

me that she was showing several signs of Down Syndrome. This while the nurses

were having a hard time suctioning the fluid from her chest, and she went on to

say what the signs were; breathing distress, small size, creases in her hands,

low set ears, and flat nose, and she was quite sure it's Down Syndrome. Mind

you! This was in my heavily drug induced state, which is where her incompetence

comes in! Had I been clear headed, and already held

and bonded with Dasia, this news wouldn't have had half the impact it had. I

was so out of it from the Nubain, that I was afraid to even hold her, feeling

like I couldn't handle what I was hearing, like I was about to lose it. Just

remembering my 1st cousin who died at 22 from heart complications due to DS

about 8 years ago. My husband called people from our church, who came right away

to give support. Then he was on the phone crying, with my Aunt from CA on the

other end ready to get on the next flight to IN! It was horrible! So finally

about 4 hours after delivery I came to terms with what was happening, and the

next day I had a new nurse, and I told her what was going on, and she said, I

don't see it, I would get a second opinion. For the first time I had hope that

maybe it wasn't true. I had been totally convinced it was true because I knew

it was genetic, and it was in my family. So right away, the nurse scheduled for

one of the peds in the hospital to meet with us, and after

examining Dasia, he said, I'm 99.9% sure she's not Down Syndrome. I was

shocked! He said he couldn't see one sign. Although I was crying out of joy

after he said that, the reality was I still couldn't get my hopes up, until the

test came back 2 weeks later. Especially since she did look different than my

other kids, and she was 2-3lbs smaller, so it definitely seemed something was

wrong. Obviously once the blood test came back, it was negative, but yeah, that

was crazy, I sometimes think it was God's will for me to experience that so I

would be so thankful once I heard the diagnosis we do have to deal with, which

will never be as hard as dealing with DS.

I hope you guys have a very peaceful and enjoyable weekend, you deserve it!

anderkat3 wrote:

Hi. We got back yesterday from Autumn's studies, they were an

absolute nightmare. We were there by 10:30 and got admitted then

went to radiology for the probe. 2.5 hours later at 1 it got put in

over 2 hours late. Then they had problems with the room and

transport to take us there, we were sent out to the waiting room for

a 'couple' of minutes. Autumn was screaming, gagging, vomiting spit

and mucous, drooling and we were in the waiting room! WE should have

been in the hospiatal room by then! Then 15 minutes passed, I went

up to the desk adn they made phonecalls and then I was told the room

wouldn't be ready until 1:45 although it should have been ready at

10! Then transport never came. Autumn was still gagging and vomitin

and dripping wet with drool, she was too scared to swallow so her

mouth was hanging open and by now summer was hungry and just

screaming. I went up and said I needed a supervisor now, then I just

started to cry. Now I am not a crier, especially in public so it was

horrible. Finally a manager came and after about 15 more minutes

later we were taken to a room but not in the place we originnaly had

a room reserved. We get up there I demand she drinks something (she

wouldn't immediatly after the probe but was thirsty) they tried

saying no because her recording box wasn't hooked up yet but I said

it had been hours since she had anything so they need to come up now

or she will drink! So she got a drink adn finally by 3 they hooked

the box up for recording. The probe was then loose around the nose

(it was tape\d on the cheek) and no one could figure how to tape it

right up there and keep it from moving so it made her gag and they

kept tryign and didn't kow what to do. I ended up having to tell

them to use one of those things that are used to keep oxygen tubes in

place, this was done at 10 p.m.

Doctors were coming in and asking why is she having this done? Why

did a surgeon order it and not a gi doctor? Why are we here? I was

asked this numerous times over the visit. There was constant

misinformation and I kept being passed off to the next person. I was

told they would be back at 9 to take out the probe adn by 9:30 next

morning no one came. Finally someone found out I was supposed to

call some number to let them know when she had last ate and they

would be there 2 hours later. I had another manager come and

everything was just a big mess. No one told me anythign, no one in

this wing knew about probes, it turns out the original place we were

told we were staying that morning was the place these tests were

done, so they were clueless here. I was also told to push the button

during her eating and crying/ gagging but they failed to mention push

it 2 times to hear the beep, I realized this later on that night

after a problem so a lot of stuff at first was not recorded.

Then came the upper gi after the probe was out. We got in on time

but over 1 hour of 3 people and me trying and we could not get Autumn

to drink any barium out of a bottle, cup/straw, syringe, some strange

contraption they made didn't work, they added chocolate to

it....nothing, a couple of drops got down her throat so she threw it

up. Finally they needed to ng tube her to give her barium. The

whole experience was a nightmare.

I was advised by the manager in radiology to file a complaint with

the hospital about the problems with the probe and room. I will be

doing that soon.

Thanks for listening.

mom to Autumn 20.5 mos RSS, Summer, Ocean, Skye

[Guest guest]

Hi ,

that is AWFUL! Definitely write the letter!

> >

> > Hi. We got back yesterday from Autumn's studies, they were an

> > absolute nightmare. We were there by 10:30 and got admitted

then

> > went to radiology for the probe. 2.5 hours later at 1 it got

put

> in

> > over 2 hours late. Then they had problems with the room and

> > transport to take us there, we were sent out to the waiting room

> for

> > a 'couple' of minutes. Autumn was screaming, gagging, vomiting

> spit

> > and mucous, drooling and we were in the waiting room! WE should

> have

> > been in the hospiatal room by then! Then 15 minutes passed, I

went

> > up to the desk adn they made phonecalls and then I was told the

> room

> > wouldn't be ready until 1:45 although it should have been ready

at

> > 10! Then transport never came. Autumn was still gagging and

> vomitin

> > and dripping wet with drool, she was too scared to swallow so

her

> > mouth was hanging open and by now summer was hungry and just

> > screaming. I went up and said I needed a supervisor now, then I

> just

> > started to cry. Now I am not a crier, especially in public so

it

> was

> > horrible. Finally a manager came and after about 15 more

minutes

> > later we were taken to a room but not in the place we originnaly

> had

> > a room reserved. We get up there I demand she drinks something

> (she

> > wouldn't immediatly after the probe but was thirsty) they tried

> > saying no because her recording box wasn't hooked up yet but I

said

> > it had been hours since she had anything so they need to come up

> now

> > or she will drink! So she got a drink adn finally by 3 they

> hooked

> > the box up for recording. The probe was then loose around the

nose

> > (it was tape\d on the cheek) and no one could figure how to tape

it

> > right up there and keep it from moving so it made her gag and

they

> > kept tryign and didn't kow what to do. I ended up having to

tell

> > them to use one of those things that are used to keep oxygen

tubes

> in

> > place, this was done at 10 p.m.

> > Doctors were coming in and asking why is she having this done?

Why

> > did a surgeon order it and not a gi doctor? Why are we here? I

> was

> > asked this numerous times over the visit. There was constant

> > misinformation and I kept being passed off to the next person.

I

> was

> > told they would be back at 9 to take out the probe adn by 9:30

next

> > morning no one came. Finally someone found out I was supposed

to

> > call some number to let them know when she had last ate and they

> > would be there 2 hours later. I had another manager come and

> > everything was just a big mess. No one told me anythign, no one

in

> > this wing knew about probes, it turns out the original place we

> were

> > told we were staying that morning was the place these tests were

> > done, so they were clueless here. I was also told to push the

> button

> > during her eating and crying/ gagging but they failed to mention

> push

> > it 2 times to hear the beep, I realized this later on that night

> > after a problem so a lot of stuff at first was not recorded.

> >

> > Then came the upper gi after the probe was out. We got in on

time

> > but over 1 hour of 3 people and me trying and we could not get

> Autumn

> > to drink any barium out of a bottle, cup/straw, syringe, some

> strange

> > contraption they made didn't work, they added chocolate to

> > it....nothing, a couple of drops got down her throat so she

threw

> it

> > up. Finally they needed to ng tube her to give her barium. The

> > whole experience was a nightmare.

> >

> > I was advised by the manager in radiology to file a complaint

> with

> > the hospital about the problems with the probe and room. I will

be

> > doing that soon.

> >

> > Thanks for listening.

> >

> > mom to Autumn 20.5 mos RSS, Summer, Ocean, Skye

> >

>

[Guest guest]

,

Please follow Shedon's advice. Write, call and email your state

senators. Get their help. File a complaint with the hospital. Don't

be afraid to contact everyone you think might be able to help. The

only way we will ever see change is if we follow through and let

people know how badly we are treated at times - even in the " best " of

hospitals. What happened to you all is just inexcusable.

Jodi Z