Re: Maddy update Saturday

[Guest guest]

Hi,

Glad to hear you got a break. It must be very hard...I was in with

Emerence for just 2 days and it felt like forever. Hope Maddie is

doing o kay.

, mom to 5 and Emerence 2.5 22 lb 32.5 "

> hello everyone,

> Today My husband came with his mom and 2 sisters and they brought

the three

> boys. I was SOOOOOOO HAPPY. They really made my day. Lou and I

took a walk

> together, arouond NY holding hands it was so sweet. We haven't

done that in a

> while and I really needed the air. I could see how bad the boys

missed me which

> made me feel good. Now I am ready to deal with a few more days

here. Keep ya

> posted.

> Chrissy

>

>

>

[Guest guest]

Hey Chrissy - I'm so glad you had a nice day - you both deserved it

so! I'm sure Maddy enjoyed seeing her siblings too.

I'm sorry I didn't call you this evening. I'm actually finally

getting a chance to get on-line. A little problem with a child who

doesn't want to go to bed and a husband who wants to be " the

enforcer " but chooses not to do so - go figure. Of course, that

makes me the bad guy.

Talk to you later.

- H

> hello everyone,

> Today My husband came with his mom and 2 sisters and they brought

the three

> boys. I was SOOOOOOO HAPPY. They really made my day. Lou and I

took a walk

> together, arouond NY holding hands it was so sweet. We haven't

done that in a

> while and I really needed the air. I could see how bad the boys

missed me which

> made me feel good. Now I am ready to deal with a few more days

here. Keep ya

> posted.

> Chrissy

>

>

>

[Guest guest]

Join the bad-guy/mom club

, mom to and Emerence 2.5 22 lbs 32.5 "

> > hello everyone,

> > Today My husband came with his mom and 2 sisters and they

brought

> the three

> > boys. I was SOOOOOOO HAPPY. They really made my day. Lou and I

> took a walk

> > together, arouond NY holding hands it was so sweet. We haven't

> done that in a

> > while and I really needed the air. I could see how bad the boys

> missed me which

> > made me feel good. Now I am ready to deal with a few more days

> here. Keep ya

> > posted.

> > Chrissy

> >

> >

> >

[Guest guest]

I don't know why Chrissy hasn't posted it, but I will because I am so

happy for them. Maddy is supposed to go home on Tuesday! She will

have her picc line, but she is eating, so that is good. And Dr. H.

won't let Maddy have the surgery until October when Dr. H. is back

from vacation. I'll let Chrissy fill you in on the rest.

Chrissy, I will call you tomorrow. Big things were happening here

today and I got tied up. We may have had a breakthrough!

Jodi Z

[Guest guest]

That is wonderful. You can finally hear happiness in your post. I am so happy

for you. I was hoping to give you a call which I will do later today when I'm

sure you are awake.

Keep up the good work.

B

chrissynlou@... wrote:

hello everyone,

Today My husband came with his mom and 2 sisters and they brought the three

boys. I was SOOOOOOO HAPPY. They really made my day. Lou and I took a walk

together, arouond NY holding hands it was so sweet. We haven't done that in a

while and I really needed the air. I could see how bad the boys missed me which

made me feel good. Now I am ready to deal with a few more days here. Keep ya

posted.

Chrissy

[Guest guest]

Chrissy,

Our thoughts and prayers are with you and your family. We pray

everything will get better soon.

Amy (mom to Abby)

> Maddy was discharged from Mt. Siani in NY on Friday night. They

placed her on a Broviack which is an IV that goes through her neck

and into her heart. She is supposed to recieve feedings through this

24 hours a day untill mid October. However Saturday morning it fell

out. Thank god the home care nurse was here when it happend. So now

she is back in the hospital but this time she is at St.

's in Philly. We waited all night last night and half of

today to meet a surgent. Finally around 5pm we were able to find Dr.

H who is in Hawaii and she called and freaked out. Maady was wothout

any nutritian since 245 yesterday afternoon. No tube feeds No

central line feeds and no eating by mouth at all. So Dr. H and I

were both going crazy. We spent just shy of 3 weeks in NY to get her

stable enough to come home and now we are having set backs not even

24 hours later!!! The only thing she was getting was dextrose

through her IV. I really want o know whats wrong with these Docs in

> Philly?? It's not that hard to figure out all they need to do is

look at how tiny this 4 year old is and see the importance in

getting this line place ASAP!!! She is going to have surgery AGAIN

tomorrow to have a port placed. This will go in her side under the

skin and it cannot be pulled out so if she steps in the line or one

of her brothers pulls it the port will never be removed. They think

the Broviak fell out because the stitches that were holding it in

place came out. So tomorrow is another day lets just hope these

docs wake up and follow Dr. H's orders very closely. I will be sure

to update as soon as i get to a computer.

> Oh yea by the way she is in isolation due to her Staph infection

so she can't leave the room and her iv is in her foot so now she is

stuck in the bed and can't do anything but watch Tv and color. Fun

huh?

> Chrissy

>

>

> __________________________________________________

>

[Guest guest]

Oh, Chrissy!!!! I can't believe this! You are in our prayers. Jenn

> Maddy was discharged from Mt. Siani in NY on Friday night. They

placed her on a Broviack which is an IV that goes through her neck

and into her heart. She is supposed to recieve feedings through this

24 hours a day untill mid October. However Saturday morning it fell

out. Thank god the home care nurse was here when it happend. So now

she is back in the hospital but this time she is at St.

's in Philly. We waited all night last night and half of

today to meet a surgent. Finally around 5pm we were able to find Dr.

H who is in Hawaii and she called and freaked out. Maady was wothout

any nutritian since 245 yesterday afternoon. No tube feeds No

central line feeds and no eating by mouth at all. So Dr. H and I

were both going crazy. We spent just shy of 3 weeks in NY to get her

stable enough to come home and now we are having set backs not even

24 hours later!!! The only thing she was getting was dextrose

through her IV. I really want o know whats wrong with these Docs in

> Philly?? It's not that hard to figure out all they need to do is

look at how tiny this 4 year old is and see the importance in

getting this line place ASAP!!! She is going to have surgery AGAIN

tomorrow to have a port placed. This will go in her side under the

skin and it cannot be pulled out so if she steps in the line or one

of her brothers pulls it the port will never be removed. They think

the Broviak fell out because the stitches that were holding it in

place came out. So tomorrow is another day lets just hope these

docs wake up and follow Dr. H's orders very closely. I will be sure

to update as soon as i get to a computer.

> Oh yea by the way she is in isolation due to her Staph infection

so she can't leave the room and her iv is in her foot so now she is

stuck in the bed and can't do anything but watch Tv and color. Fun

huh?

> Chrissy

>

>

> __________________________________________________

>

[Guest guest]

Chrissy,

Hang in there. We are all thinking of you and Maddy.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

CHRISSY!!! HOW AWFUL!!!! Our thoughts are with you!! It seems as though

you just can't get a break!!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of Brock

Sent: Monday, September 12, 2005 11:08 AM

To: RSS-Support

Subject: Re: Maddy update Saturday

Oh, Chrissy!!!! I can't believe this! You are in our prayers. Jenn

> Maddy was discharged from Mt. Siani in NY on Friday night. They

placed her on a Broviack which is an IV that goes through her neck

and into her heart. She is supposed to recieve feedings through this

24 hours a day untill mid October. However Saturday morning it fell

out. Thank god the home care nurse was here when it happend. So now

she is back in the hospital but this time she is at St.

's in Philly. We waited all night last night and half of

today to meet a surgent. Finally around 5pm we were able to find Dr.

H who is in Hawaii and she called and freaked out. Maady was wothout

any nutritian since 245 yesterday afternoon. No tube feeds No

central line feeds and no eating by mouth at all. So Dr. H and I

were both going crazy. We spent just shy of 3 weeks in NY to get her

stable enough to come home and now we are having set backs not even

24 hours later!!! The only thing she was getting was dextrose

through her IV. I really want o know whats wrong with these Docs in

> Philly?? It's not that hard to figure out all they need to do is

look at how tiny this 4 year old is and see the importance in

getting this line place ASAP!!! She is going to have surgery AGAIN

tomorrow to have a port placed. This will go in her side under the

skin and it cannot be pulled out so if she steps in the line or one

of her brothers pulls it the port will never be removed. They think

the Broviak fell out because the stitches that were holding it in

place came out. So tomorrow is another day lets just hope these

docs wake up and follow Dr. H's orders very closely. I will be sure

to update as soon as i get to a computer.

> Oh yea by the way she is in isolation due to her Staph infection

so she can't leave the room and her iv is in her foot so now she is

stuck in the bed and can't do anything but watch Tv and color. Fun

huh?

> Chrissy

>

>

> __________________________________________________

>

[Guest guest]

Chrissy,

Poor Maddy. I am so sorry she is going thru all this. It just isn't fair. I

have her in my prayers. I know it's pretty stressful on you too. Please try to

get some rest.

Tammy

Jodie Cals wrote:

Maddy was discharged from Mt. Siani in NY on Friday night. They placed her on a

Broviack which is an IV that goes through her neck and into her heart. She is

supposed to recieve feedings through this 24 hours a day untill mid October.

However Saturday morning it fell out. Thank god the home care nurse was here

when it happend. So now she is back in the hospital but this time she is at St.

's in Philly. We waited all night last night and half of today to

meet a surgent. Finally around 5pm we were able to find Dr. H who is in Hawaii

and she called and freaked out. Maady was wothout any nutritian since 245

yesterday afternoon. No tube feeds No central line feeds and no eating by mouth

at all. So Dr. H and I were both going crazy. We spent just shy of 3 weeks in NY

to get her stable enough to come home and now we are having set backs not even

24 hours later!!! The only thing she was getting was dextrose through her IV. I

really want o know whats wrong with these Docs in

Philly?? It's not that hard to figure out all they need to do is look at how

tiny this 4 year old is and see the importance in getting this line place

ASAP!!! She is going to have surgery AGAIN tomorrow to have a port placed.

This will go in her side under the skin and it cannot be pulled out so if she

steps in the line or one of her brothers pulls it the port will never be

removed. They think the Broviak fell out because the stitches that were holding

it in place came out. So tomorrow is another day lets just hope these docs wake

up and follow Dr. H's orders very closely. I will be sure to update as soon as i

get to a computer.

Oh yea by the way she is in isolation due to her Staph infection so she can't

leave the room and her iv is in her foot so now she is stuck in the bed and

can't do anything but watch Tv and color. Fun huh?

Chrissy

__________________________________________________