Re: maddy update from NY

[Guest guest]

Chrissy,

I am so glad to hear Madison is up and moving

around!!! That's wonderful. How you are doing? I

hope you have something a little comfortable to be

sleeping on. I'm thinking of you guys.

B

--- chrissynlou@... wrote:

> Hello everyone,

> Madison's MRI was fine so I met with Dr. H

> and the GI doc today and

> they are going to do another gastric emptying study

> tomorrow and also an

> endoscopy. They have found that she was severly

> constipated and her belly was full of

> air despite our constant venting. She is now getting

> Miralax which I know

> many of you are familiar with and Protonix which

> isn't really approved in

> children however nothing else helped so they didn't

> have a choice. she is currently

> on the TPN and getting the total fat. What I do know

> for sure is that Maddy

> will come home the TPN and NO GI FEEDS untill Dr.

> Spigland is back from vacation

> (around sept 7th ) . When Dr. Spigland gets back she

> is going to have her

> nissan repaired and the g tube removed. They will

> place a G-J instead but it will

> be moved higher up on her belly.

> They are going to start her back on food when the

> edoscopy and Gastric

> emptying study are done however her sugars are

> already in the 150's from the TPN so

> Dr. H doesn't want her getting carbs. Great what

> doesn't have CARBS!!!!

> Today she is much happier we are playing in the play

> room and she acually

> talked to Dr. H today!!!! Big improvemnet for her

> LOL. Dr. H is going to deal

> with Maddy's insurance company herself so hopefully

> there won't be any problems.

> Well i'll post again later.

> Thanks to everyone for the support,

> Chrissy

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Chrissy,

They ARE going to let you go home with the TPN? That is wonderful

news! Now you have to keep Maddy away from Shane. That will be hard,

huh? I'm glad to hear she has perked up. I'll call you later today.

Jodi

[Guest guest]

Such good news!!! Hopefully Dr. H can handle your insurance co (from

my brief encounters with her I don't think they stand a chance...).

Regards,

> Hello everyone,

> Madison's MRI was fine so I met with Dr. H and the GI doc

today and

> they are going to do another gastric emptying study tomorrow and

also an

> endoscopy. They have found that she was severly constipated and her

belly was full of

> air despite our constant venting. She is now getting Miralax which

I know

> many of you are familiar with and Protonix which isn't really

approved in

> children however nothing else helped so they didn't have a choice.

she is currently

> on the TPN and getting the total fat. What I do know for sure is

that Maddy

> will come home the TPN and NO GI FEEDS untill Dr. Spigland is back

from vacation

> (around sept 7th ) . When Dr. Spigland gets back she is going to

have her

> nissan repaired and the g tube removed. They will place a G-J

instead but it will

> be moved higher up on her belly.

> They are going to start her back on food when the edoscopy and

Gastric

> emptying study are done however her sugars are already in the 150's

from the TPN so

> Dr. H doesn't want her getting carbs. Great what doesn't have

CARBS!!!!

> Today she is much happier we are playing in the play room and she

acually

> talked to Dr. H today!!!! Big improvemnet for her LOL. Dr. H is

going to deal

> with Maddy's insurance company herself so hopefully there won't be

any problems.

> Well i'll post again later.

> Thanks to everyone for the support,

> Chrissy

>

>

>

[Guest guest]

Chrissy,

Try not to be too nervous. You can get nursing care to come in and

help you. The nurse will guide you through everything. You will

not be allowed to change the dressing, which must be done once a

week, but you will have to mix the stuff that goes into the bag.

They will make up the correct mixes for Maddy. As I think I told

you, you have to add some of the stuff yourself because it is not

stable for long periods of time.

Maddy should be able to use a backpack to carry the TPN et al in.

But it might be very heavy. It was for Max, but he was larger than

she, so he had more fluids to lug around. He took it to school with

him.

There is a lot to learn and it can seem overwhelming, but you will

do it. Just make sure that you tell the homecare company that you

NEED support and are scared. They will not let you keep Maddy home

alone if you are unsure. They will send nurses as needed - and give

you the number of someone to call.

As always, you can call me anytime. I'll even drive out to you if I

need to. Jodie and I can make the trip together.

When are you going home?

Jodi Z

I've been trying to call you, but your line is busy. I assume you

are on the computer.

[Guest guest]

Chrissy -

I don't know if you know that my daughter had TPN from

December 2002 through March 2003. In terms of dealing with the

formula changes every day, I've heard it isn't much different from the

g-tube. However, proper cleaning is MUCH more important because of

the risk of sepsis, since the catheter line goes directly into the

vein and next to the heart. THey will explain all this to you-- if

your insurance allows home health care, do it. We had them come in

once a week and they were the ones that did the changing of the tubing

with proper cleaning, etc. I still had to do the daily stuff but not

changing. Despite our best interests, still got sepsis 3

months into it. One thing they told me that saved was to

watch all the time for sudden fevers. It just happened that

was fine, day at the beach, and my husband went into her room at night

to kiss her forehead and found her burning up. Got her to the

hospital within an hour and IV antiobiotics started immediately.

Jenn Salem

> Chrissy,

>

> They ARE going to let you go home with the TPN? That is wonderful

> news! Now you have to keep Maddy away from Shane. That will be

hard,

> huh? I'm glad to hear she has perked up. I'll call you later today.

>

> Jodi

[Guest guest]

Oh Chrissy - I'm so glad to hear from you. It sounds like things

are progressing along well - considering - and again - I'm so happy

to know Dr. H is there with you. We continue to think of the two of

you. Our thoughts and prayers to you both. Thanks for keeping us

posted.

- H, Ian, , and Joe

> Hello everyone,

> Madison's MRI was fine so I met with Dr. H and the GI doc

today and

> they are going to do another gastric emptying study tomorrow and

also an

> endoscopy. They have found that she was severly constipated and

her belly was full of

> air despite our constant venting. She is now getting Miralax which

I know

> many of you are familiar with and Protonix which isn't really

approved in

> children however nothing else helped so they didn't have a choice.

she is currently

> on the TPN and getting the total fat. What I do know for sure is

that Maddy

> will come home the TPN and NO GI FEEDS untill Dr. Spigland is back

from vacation

> (around sept 7th ) . When Dr. Spigland gets back she is going to

have her

> nissan repaired and the g tube removed. They will place a G-J

instead but it will

> be moved higher up on her belly.

> They are going to start her back on food when the edoscopy and

Gastric

> emptying study are done however her sugars are already in the

150's from the TPN so

> Dr. H doesn't want her getting carbs. Great what doesn't have

CARBS!!!!

> Today she is much happier we are playing in the play room and she

acually

> talked to Dr. H today!!!! Big improvemnet for her LOL. Dr. H is

going to deal

> with Maddy's insurance company herself so hopefully there won't

be any problems.

> Well i'll post again later.

> Thanks to everyone for the support,

> Chrissy

>

>

>

[Guest guest]

Chrissy,

Good luck with everything. Maddy is in my thoughts and prayers.

Tammy

Mom to 21mos. 16lbs IUGR, SGA, GERD, Fundo, g-tube, GHT and 6 yrs

ADHD

chrissynlou@... wrote:

Hello everyone,

Madison's MRI was fine so I met with Dr. H and the GI doc today and

they are going to do another gastric emptying study tomorrow and also an

endoscopy. They have found that she was severly constipated and her belly was

full of

air despite our constant venting. She is now getting Miralax which I know

many of you are familiar with and Protonix which isn't really approved in

children however nothing else helped so they didn't have a choice. she is

currently

on the TPN and getting the total fat. What I do know for sure is that Maddy

will come home the TPN and NO GI FEEDS untill Dr. Spigland is back from vacation

(around sept 7th ) . When Dr. Spigland gets back she is going to have her

nissan repaired and the g tube removed. They will place a G-J instead but it

will

be moved higher up on her belly.

They are going to start her back on food when the edoscopy and Gastric

emptying study are done however her sugars are already in the 150's from the TPN

so

Dr. H doesn't want her getting carbs. Great what doesn't have CARBS!!!!

Today she is much happier we are playing in the play room and she acually

talked to Dr. H today!!!! Big improvemnet for her LOL. Dr. H is going to deal

with Maddy's insurance company herself so hopefully there won't be any

problems.

Well i'll post again later.

Thanks to everyone for the support,

Chrissy