Re: Madison surgical consult

[Guest guest]

I'm so happy for you Chrissy ... I know what it's like to get some

good feelings from the doc and it's wonderful he's being so

cooperative and going to talk to Dr. H.

Dawna

>

> Sorry I haven't had the chance to post about Maddy's surgical

consult but

> the kids have been crazy. I reacieved everyones emails about their

concern and

> I thank you all.

>

> This doctor's name is Dr. Nance I'm not really sure if he is

familiar with

> RSS but he didn't act as tho it was foreign. He recieved alot of

things from

> Dr. H and Yadira and reviewed them all before our visit. Basically

he agrees

> with Dr. H that the surgery is going to take a great toll on

Maddy's fragile

> body however without it she won't ever be able to eat or drink. He

also agrees

> that it would be a bad idea to do it all in one procedure he

thinks it should

> be two spaced out operations to give her body a break. He wants to

phone Dr.

> H ( yes thats right you read correct he's argeed to call her ) and

speak to

> her about her exact plans and which endo doc she wants from CHOP

to be on

> their team. He didn't complain about Dr. H being in charge or

calling the shots

> so Lou and I were so happy. He said that once he spoke with Dr. H

he would

> call me and set a date.

> I think Dr. H will be very pleased with him and I hope things move

quickly.

> In the meantime she still vomits every night and we have to change

her bed

> every morning. She hasn't eaten in weeks and refuses liquids she

says " that

> makes me choke " . So we have given up that fight, since she's on TPN

we know

> she's getting nutricen.

>

>

>

[Guest guest]

Chrissy,

I'm so glad that you found a doctor who is willing to work with Dr. H.

and who seems to understand the specific medical needs of Maddy. I

hope that the surgery is scheduled for sooner rather than later.

Wouldn't it be nice to have Maddy off the TPN in time for Christmas?

I know this has been a long haul and there is much more to go, but you

are moving in the right direction at last. Lots of us are pulling for

you guys.

Jodi Z

[Guest guest]

Chrissy - thank you so much for keeping us posted - I've been

hanging by the computer to see what the next steps were going to be

<grin>. That is such wonderful news that Dr. Nance is willing to

work with Dr. H - I'll bet you feel a little " stress " off your

shoulders and are able to breathe a sigh of relief now that at least

the communication aspect of this procedure will run smoothly - and

quite frankly - that is an important piece since we all know that

Dr. H knows what she is doing.

I hope that you will be able to schedule the surgery sooner than

later. Chrissy - please know that we are all here for you. My

mother-in-law has family in Philadelphia and I'm hoping to " pull

some strings " (I've never met them LOL) to be able to come in

January (for what we talked about <grin>).

Hugs to you and Maddy.

Ps - the crazy part of the kids - I'm right there with you. <big

grin>

- H

-

>

> Sorry I haven't had the chance to post about Maddy's surgical

consult but

> the kids have been crazy. I reacieved everyones emails about their

concern and

> I thank you all.

>

> This doctor's name is Dr. Nance I'm not really sure if he is

familiar with

> RSS but he didn't act as tho it was foreign. He recieved alot of

things from

> Dr. H and Yadira and reviewed them all before our visit.

Basically he agrees

> with Dr. H that the surgery is going to take a great toll on

Maddy's fragile

> body however without it she won't ever be able to eat or drink.

He also agrees

> that it would be a bad idea to do it all in one procedure he

thinks it should

> be two spaced out operations to give her body a break. He wants

to phone Dr.

> H ( yes thats right you read correct he's argeed to call her )

and speak to

> her about her exact plans and which endo doc she wants from CHOP

to be on

> their team. He didn't complain about Dr. H being in charge or

calling the shots

> so Lou and I were so happy. He said that once he spoke with Dr. H

he would

> call me and set a date.

> I think Dr. H will be very pleased with him and I hope things move

quickly.

> In the meantime she still vomits every night and we have to change

her bed

> every morning. She hasn't eaten in weeks and refuses liquids she

says " that

> makes me choke " . So we have given up that fight, since she's on

TPN we know

> she's getting nutricen.

>

>

>

[Guest guest]

hey chrissy!!

i am so glad that some one is thinking of maddie and not their ego and

are going to work with dr h to make her better!!!

jodie c

[Guest guest]

Chrissy,

I am so glad things went well and this doctor WANTS to talk to Dr.

H. That is so reassuring. I am so glad you found someone who is

really thinking about Maddy and wanting her to be okay. Please let

us know when you find out the details. I hope you guys can have it

done quickly so poor Maddy can get back to some normalcy.....and you

guys too.

Jodi R.

>

> Sorry I haven't had the chance to post about Maddy's surgical

consult but

> the kids have been crazy. I reacieved everyones emails about their

concern and

> I thank you all.

>

> This doctor's name is Dr. Nance I'm not really sure if he is

familiar with

> RSS but he didn't act as tho it was foreign. He recieved alot of

things from

> Dr. H and Yadira and reviewed them all before our visit. Basically

he agrees

> with Dr. H that the surgery is going to take a great toll on

Maddy's fragile

> body however without it she won't ever be able to eat or drink. He

also agrees

> that it would be a bad idea to do it all in one procedure he

thinks it should

> be two spaced out operations to give her body a break. He wants to

phone Dr.

> H ( yes thats right you read correct he's argeed to call her ) and

speak to

> her about her exact plans and which endo doc she wants from CHOP

to be on

> their team. He didn't complain about Dr. H being in charge or

calling the shots

> so Lou and I were so happy. He said that once he spoke with Dr. H

he would

> call me and set a date.

> I think Dr. H will be very pleased with him and I hope things move

quickly.

> In the meantime she still vomits every night and we have to change

her bed

> every morning. She hasn't eaten in weeks and refuses liquids she

says " that

> makes me choke " . So we have given up that fight, since she's on TPN

we know

> she's getting nutricen.

>

>

>