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Jodi,

I'm sorry that you have so much going on. AGAIN!!! We all shared in

your joy when Max lost his tube. But try to take it one day at a time and know

that there are people on here who care about you and are praying for you. Good

luck!! You'll be in our prayers.

mom to , 6, and Christian, 3

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Max is still in the hospital. I am home for my shower and fresh

clothing break. He cannot keep any food down still and now we are

looking at replacing the g-j tube. Sigh.

I really was okay with all of this until the covering GI doctor came

in yesterday and pressed me to find out why in the world we ever

even considered pulling the tube. I told her that our regular GI,

her BOSS, had recommended it and she just made a disapproving face.

She said that Max is going to need another tube and that this time

we are NOT to pull it under any circumstances. She wants to see it

in there in two years if need be. She was blunt and disapproving

and I was MAD!!!!!

So, what do I do? I immediately start feeling guilty. I know that

the GI doctor did approve of pulling it, I know that Max was so

HAPPY to be rid of it, I know that we did the right thing at the

time. But to be put down by the doctor like that really hurt and

was unnecessary. I mean, we have been through so much in 15 years

and we just don't need anymore finger pointing or guilt trips, you

know?

Anyway, trying to be the " good " parent, my husband and I told her

that SHE should talk to Max and tell him what his options are - eat

or have the tube replaced. We left the room and let her talk. Max

was pretty upset when she left and I held him while he cried.

Fortunately, he fell asleep for two hours and when he woke up, he

began to ask questions. I think he had processed it and was

starting to understand what was going on. Meanwhile, he is getting

trays of food and spitting/throwing up each bite that goes into him.

So, this is a long saga and has no end yet. I will meet with the GI

tomorrow when I get back to the hospital after teaching. They are

going to have to schedule the procedure around MY time, though. I

will be leaving the hospital at 7am each day and can be back by

noon. They will have to schedule the procedures accordingly. I

can't lose my job over this.

Jodi Z.

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Jodi-

I'm sympathize with you on this one..it's very easy for Drs. to come in

and treat you like you are some bad little kid for doing what you think/know is

best. I got into a heated argument with a -resident- GI Dr. about Xavier

being hooked up to his tube. From the day he got it, I was doing all of his

feeding stuff, programing the machine, hooking him up, making sure he had the

right

amount and kind of formula, (the kind and the cal were changed so many times

the nurses were not keeping it straight) Xavier got rotovirus while in the

hospital, a few days after having his tube placed. He was screaming in pain

from

the buildup of gas in his stomach, the surgery he had just had, (you only had

to look at the pulseox to see how high his poor little heartrate was) and he

was pooping every few minutes or so. I called the nurse in to ask her for pain

meds, and said that I thought he needed to come off for a while. I waited an

hour. No meds, no one came in to see him. So I disconnected him, rang for

the nurse, and told her what I was doing. She apologized for forgetting. I was

not going to let my baby scream because they had forgotten him! I held him

until he fell asleep. This resident GI doc comes in and starts berating me for

taking him off the pump, because the nurse had not charted it. (not my

problem, I told her when I was doing it) and dah, dah, dah. We proceeded to get

into

it for about a half an hour, over the responsibilities of the hospital to

treat my son in a timely manner, nursing procedures, et. (she really had no leg

to stand on there, I am a nurse so I know that there is no excuse for not

charting, and not showing up with meds (especially pain) in a reasonable amount

of

time) until her superior came in. He's great, and that " disagreement " was

quickly settled, and she no longer came in to see my son.

Long, I know, but I commiserate, for doing what you think is best for your

child, sometimes you get your head chewed off.... but don't feel guilty. It

would be nice to see what she did if she were in your shoes!

Jen and Lance

Xavier 15months, 16lbs!, 27in RSS, G-tube, Fundoplacation, 27 cal Formula,

Myrilax, ST, OT, PT, FT

Emerald, 5, Non RSS

Wyatt, 4, Non RSS

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Hi Jodi,

Sorry to hear that Max is having such a hard time again. You know, it is

easy for doctors to talk to you like that, but that is not their child and

it is not just black and white. Stay strong and you are in our prayers.

, Jonah's mom.

Feeling Guilty

> Max is still in the hospital. I am home for my shower and fresh

> clothing break. He cannot keep any food down still and now we are

> looking at replacing the g-j tube. Sigh.

>

> I really was okay with all of this until the covering GI doctor came

> in yesterday and pressed me to find out why in the world we ever

> even considered pulling the tube. I told her that our regular GI,

> her BOSS, had recommended it and she just made a disapproving face.

> She said that Max is going to need another tube and that this time

> we are NOT to pull it under any circumstances. She wants to see it

> in there in two years if need be. She was blunt and disapproving

> and I was MAD!!!!!

>

> So, what do I do? I immediately start feeling guilty. I know that

> the GI doctor did approve of pulling it, I know that Max was so

> HAPPY to be rid of it, I know that we did the right thing at the

> time. But to be put down by the doctor like that really hurt and

> was unnecessary. I mean, we have been through so much in 15 years

> and we just don't need anymore finger pointing or guilt trips, you

> know?

>

> Anyway, trying to be the " good " parent, my husband and I told her

> that SHE should talk to Max and tell him what his options are - eat

> or have the tube replaced. We left the room and let her talk. Max

> was pretty upset when she left and I held him while he cried.

> Fortunately, he fell asleep for two hours and when he woke up, he

> began to ask questions. I think he had processed it and was

> starting to understand what was going on. Meanwhile, he is getting

> trays of food and spitting/throwing up each bite that goes into him.

>

> So, this is a long saga and has no end yet. I will meet with the GI

> tomorrow when I get back to the hospital after teaching. They are

> going to have to schedule the procedure around MY time, though. I

> will be leaving the hospital at 7am each day and can be back by

> noon. They will have to schedule the procedures accordingly. I

> can't lose my job over this.

>

> Jodi Z.

>

>

>

>

>

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Hey there Jodi,

Our thought's and prayers are with you and Max. Take care of each

other.

Leah

> Max is still in the hospital. I am home for my shower and fresh

> clothing break. He cannot keep any food down still and now we are

> looking at replacing the g-j tube. Sigh.

>

> I really was okay with all of this until the covering GI doctor

came

> in yesterday and pressed me to find out why in the world we ever

> even considered pulling the tube. I told her that our regular GI,

> her BOSS, had recommended it and she just made a disapproving

face.

> She said that Max is going to need another tube and that this time

> we are NOT to pull it under any circumstances. She wants to see

it

> in there in two years if need be. She was blunt and disapproving

> and I was MAD!!!!!

>

> So, what do I do? I immediately start feeling guilty. I know

that

> the GI doctor did approve of pulling it, I know that Max was so

> HAPPY to be rid of it, I know that we did the right thing at the

> time. But to be put down by the doctor like that really hurt and

> was unnecessary. I mean, we have been through so much in 15 years

> and we just don't need anymore finger pointing or guilt trips, you

> know?

>

> Anyway, trying to be the " good " parent, my husband and I told her

> that SHE should talk to Max and tell him what his options are -

eat

> or have the tube replaced. We left the room and let her talk.

Max

> was pretty upset when she left and I held him while he cried.

> Fortunately, he fell asleep for two hours and when he woke up, he

> began to ask questions. I think he had processed it and was

> starting to understand what was going on. Meanwhile, he is

getting

> trays of food and spitting/throwing up each bite that goes into

him.

>

> So, this is a long saga and has no end yet. I will meet with the

GI

> tomorrow when I get back to the hospital after teaching. They are

> going to have to schedule the procedure around MY time, though. I

> will be leaving the hospital at 7am each day and can be back by

> noon. They will have to schedule the procedures accordingly. I

> can't lose my job over this.

>

> Jodi Z.

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Best of luck to you and Max. GRRR! Those doctors can be so insensitive. As if

you would make a choice that would be hurtful to your child! When Willie

first stopped gaining weight my ped walked into the examining room and said " D- "

and I said " in what? " and he said " basic parenting 101. "

You know you're choosing the best for your son. He's lucky to have you.

Kathy (willie age 3, 22 lbs, 32 in)

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hi jodi!!

i am so sorry to hear that max is still in the hospital and not

feeling well!! hang in there, you did nothing wrong you went by

what you were told to do. max is strong and so are you and you guys

will get through this. i will keep you guys in my thoughs and

prayers!! please keep me posted (by email if you can).((HUGS)) to

you guys!!

jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6,

johnathon-9m nonrss)

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