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Yes Dr. Spigland is doin the surgery, it turns out that madison has been in

pain when she eats due to her tube it needs to be removed and re done. She

isn't gaining wait and Dr. H was very unhappy with her Philly docs. She only

weighs 20 lbs and will be 4 in 3 weeks. she isn't doing well with weight gain.

we can't increase her tube feeds because they make her sick. it's an up hill

battle.

Chrissy

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I know I just emailed you privately, but I wanted to add that I am not

working in August, so depending on my situation here, at home, I will

try to visit at NYH - if Maddy's surgery is in August, that is. I

hope it's not too serious. Is Dr. Spigland doing the surgery? I love

her.

Jodi Z

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  • 3 weeks later...

Hi Chrissy,

Those pictures of Madison are gorgeous! We use Kiddie Kandids a lot

too and end up spending a fortune there! Sorry to hear about all the

misfortunes you have had lately. Hope things brighten up for you soon!

Kim C.

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Maddy went back to the doc today and they put her on a new antibiotic since

they have tried amoxicilin, albuterol, flovent, and prednisone and nothing

helped so we'll see if this one helps. Everything ok there?>?

Chrissy

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Wow. She's been through a lot these days. Let's hope this one

helps.

Just thinking about you guys.

- H

> Maddy went back to the doc today and they put her on a new

antibiotic since

> they have tried amoxicilin, albuterol, flovent, and prednisone and

nothing

> helped so we'll see if this one helps. Everything ok there?>?

> Chrissy

>

>

>

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> Chrissy,

Have you always had 5cc in her balloon? has never had that

much in his balloon, and he's a lot bigger than her. When he was her

size, we probably filled it between 2 & 3 cc. Now he gets 3-4 cc in

his balloon. The 5cc in her case may have nothing to do with her

problem, but that balloon is definitely taking up more space in her

stomach than it is in 's stomach. You might want to try

removing 2 cc & see if that helps her any. Does she have a Mic-key

button? Another thing I was wondering about is the location of the

tube inside her tummy. This year at the convention for the first

time I noticed that many kids had tubes in different places than

's (some looked rather high to me). Again, not sure this is

an issue, but I did wonder why diffeernt kids' tubes appeared to be

in different location. Did Maddy have a fundoplication? I was just

reading that occasionally there is the risk of damaging the vagal

nerve with a fundoplication. If this happens, it can cause gagging &

retching. had a fundo and gagged & retched horrible when

he was younger. He has outgrown this for the most part, but still

does it occasionally, especially if he is getting sick.

Kim C.

> Message: 2

> Date: Sat, 20 Aug 2005 23:11:53 EDT

> From: chrissynlou@...

> Subject: Re: Digest Number 3019 Kim C

>

> kim,

> -----SSHe has 5 cc's in her balloon is that right?>

> ------she vomits after 5 min on her tube feeds

> -------She is on peptamin jr .Which she has been on since she was a

> year ols

> nad she just turned 4.

> ------Tube looks fine, from my view anyway

> ------ nope not constipated but great thought

> ------- She gets 55 cc's an hour over night

> any ideas???

> Chrissy

>

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  • 3 weeks later...

I'm so sorry, Chrissy, that Maddy is still sick. I hope that things

turn around for her soon.

Kim C.

On Sep 6, 2005, at 1:16 AM, RSS-Support wrote:

> Message: 6

> Date: Mon, 5 Sep 2005 12:56:16 EDT

> From: chrissynlou@...

> Subject: Madison more bad news

>

> Tomorrow we were scheduled to go home however that won't be

> happening. Last

> night Maddy's arm swelled two times it's normal size and was hard

> as a rock.

> Her temperture conitinues to rise and she now has an obvious

> infection. So she

> is currently in ICU getting a central line placed in her groin and

> having the

> picc line removed. They are going to give her 5 days of antiboitics

> before they

> can place a port in her chest. once she wakes up and is stable they

> will move

> her back to her room untill the port can be placed.

>

> So I am going home tomorrow so i can get my son ready for school on

> wednesday

> and my mom is going to come and stay here. I will be back before

> the port is

> done. so I will keep u posted.

> Chrissy

>

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Chrissu!

Sorry for asking why does Madison need to get a port?

's Peadiatrition also thought of inserting

one, she was sick at that time and would have been

just a nother sight for infection. She started to

respond well on her Immunoglobulin infusions, one

every 3 weeks and later on we could wait longer before

administering it.

Elize Mom to Visser 12 RSS

--- wrote:

> Chrissy,

>

> Glad to hear you got to get a break and take care of

> your other ones

> for a bit.

>

> , mom to 5 and Emerence 2.5

>

>

> > Today Madison's culturs came back they were

> positive for Staph.

> Since the

> > antibiotic they have been giving her was clearing

> it up

> beautifully Dr. H said

> > she will talkt o the infectious disease docs and

> see if they will

> do the port

> > on Thursday but it's really their call.

> > They increased the heprine they were putting in

> the central line

> becasue the

> > blood keeps clotting however it's still not

> helping. They are

> going to see

> > about useing something stronger than heprine (

> thats a blood

> thinner).

> > Dr. H said she wants to get her home by Friday but

> I'm not holding

> my breath

> > becuase everytime I get excited to see an end in

> site something

> goes wrong

> > and we go back to square one.

> > On a better note when i got home tonight I opened

> the door and the

> boys ran

> > with open arms. I got hugs and kisses all night.

> Louis was glued

> to my side.

> > When I was putting him to bed he was begging me to

> let him sleep

> in my bed. I

> > had almost a perfect home comming. It just feels

> really wrong to

> not have

> > Maddy here too. But soon!!!

> >

> > keep you posted,

> > Chrissu

> >

> >

> > [Non-text portions of this message have been

> removed]

>

>

>

______________________________________________________

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  • 4 weeks later...

You, Jodie and I need to start playing the lottery. If one of us wins,

we go for a girls' weekend away. Briggs, you can come, too.

It doesn't have to be the big lotteries, either. Just a few hundred

dollars. We sure do deserve it!

Jodi Z

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lottery or no lottery, we just need to pick a date and go some where

any where!!! as long as there is a daquri involved we're there!! ok,

this weekend i am having the tupperware party sat night and believe me

we make frozen drinks big time!!!

jodie c

> You, Jodie and I need to start playing the lottery. If one of us

wins,

> we go for a girls' weekend away. Briggs, you can come,

too.

> It doesn't have to be the big lotteries, either. Just a few hundred

> dollars. We sure do deserve it!

>

> Jodi Z

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You guys have to come to Niagara Falls and then I can meet you too. We can

drink in the hot tub. can come too {the world traveler that she is}

and I promise no high heels for me!!!!!!

Deb

Re: Chrissy

> lottery or no lottery, we just need to pick a date and go some where

> any where!!! as long as there is a daquri involved we're there!! ok,

> this weekend i am having the tupperware party sat night and believe me

> we make frozen drinks big time!!!

>

> jodie c

>

>

> > You, Jodie and I need to start playing the lottery. If one of us

> wins,

> > we go for a girls' weekend away. Briggs, you can come,

> too.

> > It doesn't have to be the big lotteries, either. Just a few hundred

> > dollars. We sure do deserve it!

> >

> > Jodi Z

>

>

>

>

>

>

>

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Chrissy

Which Deb do you mean? If you mean me, I'm in Toronto {Canada} If you mean

another Deb, I have no idea.

Oh I bet you are thinking about my saying we could all meet in Niagara

Falls. Yeh that's the half way point for me to you guys in NJ.

Deb

Re: Re: Chrissy

> Hey Deb where are you from???

> Chrissy

>

>

>

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terry can join you two!!

jodie c

-- In RSS-Support , " Jodi Zwain " <magicrss@h...> wrote:

>

> Let's have a Vicodin party! You and I can commiserate together. I'm

> having my tooth extracted on Thursday, though, so we better make it

> quick!

>

> Jodi Z

>

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