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Chrissy,

I looked at her site last night. What great news they took her off the

TPN and she will be going home soon. I am sooo happy to hear that.

Hopefully she will stop the retching and stuff soon. I hate it that

she needs another surgery, but if that will help her get better......

Keep us updated when you update her site.

Jodi R.

>

> I have updated Maddy's web page

>

>

>

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I did not see the link to Madison's page in the e-mail. I think I

deleted it by accident the last time I checked it. What surgery? What

do they think will come of the surgery? I do not want to scare you but,

I am going to inform you of something I did not understand and I still

may not completely but, I would ask Madison's surgeon about Madison's

over all health before the next surgery. TPN is so hard on the liver

and I think also the kidneys. Ask how capable at this point in time

Madison would be able to flush out bacterial endotoxins if she

developed a post operative infection. What would be gained or lost if

you waited a little while for her body to rest and build some more

strength back.

I have not yet read your latest update so, I am discussing this without

knowing the whole story. All I know is that she has been through a lot

and waiting a couple extra months may give her body time to get

stronger to undertake another surgery. I think when our children go

through so much and bounce back so well we or at least I may have lost

sight of the complications that can happen and that our children need

to be in the best health that they can be when going through surgery.

Sometimes we have to send them in for surgery when they are not at

their strongest but, what choices do we have when all we want is the

best for them?

J

> Chrissy,

>

> I looked at her site last night. What great news they took her off the

> TPN and she will be going home soon. I am sooo happy to hear that.

> Hopefully she will stop the retching and stuff soon. I hate it that

> she needs another surgery, but if that will help her get better......

>

> Keep us updated when you update her site.

>

> Jodi R.

>

>

>

>>

>> I have updated Maddy's web page

>>

>>

>>

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,

Maddy's website is at www.babyjellybeans.com. You put in her name:

Madison and then the password is .

Maddy had surgery about two weeks ago to have a central line placed

in her neck/chest, and a j-tube placed. She came through it very

well. She began j-tube feedings almost right away and worked up to

35cc/hour. The difficulty was in finding the right formula that she

could tolerate. She was then taken off TPN and fed solely via j-

tube. She went home on Thursday and should be home for Christmas!

Now the plan is for her to have the Nissen repaired in early

January. Chrissy and Dr. H. were worried about her liver being

enlarged so a biopsy will be done then. They are hoping that things

will calm down now that she is off the TPN.

Maddy is still retching about every 5 minutes, so that has to calm

down before Dr. H. will " allow " the Nissen repair. If she is

retching, then it is only logical that the Nissen won't work because

it will come undone again. But the source could be Reglan. I know

that Max used to retch a lot from Reglan and it aggravated his

reflux. The GI doctor is trying to find the right combo for Maddy.

Meanwhile, she is also hooked up to a foley bag via the g-port so

that she is constantly being vented. (We use to use a Farrell Valve

for that purpose, but the foley bag is less expensive, I'm sure.)

I hope this helps keep you more updated. Check out the website. It

is really a great way to keep abreast of all the happenings and

goings on. I'm taking Max to see them on Friday. He is so excited!

Jodi Z

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  • 3 weeks later...

Hey I need to update her page but her sugar came down again so who knows

whats goin on. She sees GI tomorrow so i guess we will see.

Glade to hear your back and feeling better. Hug those boys for me

Chrissy

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Chrissy - hey, I read Maddy's web page for New Years. Let me know how

her sugars are doing - okay? Keep us posted. Maybe she snuck in a

few cookies while you weren't looking ? <grin>

I've been keeping Ian away from all sweets myself. And, although we

made cookies and he asked for one - as I suspected - he didn't even

eat it (thus my reason for letting him have it).

Thinking of you always.

- H

>

> Maddy's web page is updated. I just want everyone to know that I

read the

> quest book all the time and I really apprectiate the thoughts and

prayers.

> Thanks again for all the support.

> The 's family

>

> _Click here: Madison Jade - Homepage_

> (https://www.babyjellybeans.com/web/do/site/home?ID=43848)

> Password is robert

>

>

>

>

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chrissy,

i hope the dr. h appt went well.

it sounds like yo had a great time last night.we all could use a night like

that

cara mom to jacob

chrissynlou@... wrote:

I have updated Maddy's web page since she seen Dr. H yesterday

Just wanted to say that this weekend I had a night out with my sisters and

cousins. We went to a movie and dinner and yes thats right we went to a

BAR!!!!! after that we went back to there place and played games untill 2am. It

was

the best night I have had in years. No kids no men and no worries. I needed

that so bad and I know some of you do too, so i wanted to let you know I

HIGHLY RECCOMEND A NIGHT OUT FOR ALL!!!!! LOL

Chrissy

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Great to hear that things are working out so she doesn't have to go

through too much. As long as the nail polish holds up for you.

Hopefully there isn't formula all over your floor! I know how that can

be. We have a new house and unfortunately the carpet has been

initiated already. Please let us know how the surgery goes.

Take care,

JR

>

> Maddy's date for surgery was changed but for the better. So please

check it

> out at her site.

> Chrissy

>

>

>

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  • 3 weeks later...

Oh Chrissy that is just awesome. Thanks for letting us know. I don't manage to

get to Maddie's site too often so I appreciate the update!!

Deb

Madison

I haven't had the chance to update but I just wanted to let everyone know

that Madison is doing great and eating just like the boys. It's amazing. Hope

everyone is well and I will keep up on all the posts.

Chrissy

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Great news! I am so happy she is doing so well. You AND her

deserve this after ALL you guys have been through! That Zelnorm must

really be working wonders. A miracle drug....just like you said in

your email to me. Keeping my fingers crossed it will work for

! ;o)

Jodi R.

>

> I haven't had the chance to update but I just wanted to let

everyone know

> that Madison is doing great and eating just like the boys. It's

amazing. Hope

> everyone is well and I will keep up on all the posts.

> Chrissy

>

>

>

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  • 4 weeks later...

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