Re: Update on Ian Surgery Protocol

January 11, 2006

,

What an absolutely *awesome* job of advocating for Ian! You are such a great

mom!

in Alaska

RSS-Support wrote:

Date: Thu, 12 Jan 2006 00:40:24 -0000

From: " advocate22003 "

Subject: Update on Ian Surgery Protocol

Just got off the phone with the GI doc. I basically tried very hard

to be nice without sounding pathetic - but, I think I was still a

little " aggressive " LOL. Trying to get these guys to listen

sometimes can be challenging. He was VERY nice to me over the phone

and he is the sweetest physician we have ever met - I just hope I

got through to him.

The GI doc said that he is concerned insurance will not pay for an

overnight stay. I told him that if he put it in to show that Ian is

hypoglycemic - it would most likely not be a problem. I also

explained that these RSS kids are not all alike - yet they are.

And, Ian is having a real problem with his sugars. His system for

whatever reason is incredibly delicate right now and has changed

over the last six months. He said the D5 would be okay and that we

would monitor him very closely. He was worried about IV's

infiltrating again. But, I repeated AGAIN - that with the littelest

change in Ian's diet during the day - sets his blood sugars

plummeting. Perfect example was again today. Ian decided to eat

really well for lunch. I did not do the usual bolus at 12 noon - he

ate half a grilled cheese sandwich, fruit, a french fry and some

orange juice. He went down for a nap and by 4 pm - (I woke him up

to give him another bolus) his blood sugars were 80! So, as I

mentioned to the GI doc - this is a very good indication that his

blood sugars are still very unstable. He was a little lethargic -

didn't want to watch t.v. But, once we got a little food through

his NG - he was much perkier. So, I also reminded him that if Ian's

blood sugars were to drop during this entire situation next week -

that we will have great difficulties again trying to stable him and

it could take him yet again another week. I also told him I wasn't

trying to tell him what to do or obviously say that I know more - I

just told him that I'm very concerned about his blood sugars, he's

the light of my life, and I only want the best care for him.

So, the GI doc is going to have his nurse check with the insurance

company tomorrow. And, I also mentioned that my Endo would be happy

to talk to him as well (The Endo called me today and said he would

talk to him and agreed that considering his recent hospital

admission - the D10 would definately be better - I'm sure my GI doc

did not appreciate me going behind his back on that one - but, these

people have to realize that I'm serious about my son's healthcare).

I'm not a physician - but, as I told the GI doc - I still need to

voice my opinions and thoughts so that I at least feel I've done

everything I could for my child.

Okay - sorry so long. Had to get that off my chest. Thanks for

listening.

- H

---------------------------------

Yahoo! Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.

January 11, 2006

- I'm trying - I'm trying. Thanks. I needed that.

- H

> Date: Thu, 12 Jan 2006 00:40:24 -0000

> From: " advocate22003 "

> Subject: Update on Ian Surgery Protocol

>

> Just got off the phone with the GI doc. I basically tried very

hard

> to be nice without sounding pathetic - but, I think I was still a

> little " aggressive " LOL. Trying to get these guys to listen

> sometimes can be challenging. He was VERY nice to me over the

phone

> and he is the sweetest physician we have ever met - I just hope I

> got through to him.

>

> The GI doc said that he is concerned insurance will not pay for an

> overnight stay. I told him that if he put it in to show that Ian

is

> hypoglycemic - it would most likely not be a problem. I also

> explained that these RSS kids are not all alike - yet they are.

> And, Ian is having a real problem with his sugars. His system for

> whatever reason is incredibly delicate right now and has changed

> over the last six months. He said the D5 would be okay and that we

> would monitor him very closely. He was worried about IV's

> infiltrating again. But, I repeated AGAIN - that with the

littelest

> change in Ian's diet during the day - sets his blood sugars

> plummeting. Perfect example was again today. Ian decided to eat

> really well for lunch. I did not do the usual bolus at 12 noon -

he

> ate half a grilled cheese sandwich, fruit, a french fry and some

> orange juice. He went down for a nap and by 4 pm - (I woke him up

> to give him another bolus) his blood sugars were 80! So, as I

> mentioned to the GI doc - this is a very good indication that his

> blood sugars are still very unstable. He was a little lethargic -

> didn't want to watch t.v. But, once we got a little food through

> his NG - he was much perkier. So, I also reminded him that if

Ian's

> blood sugars were to drop during this entire situation next week -

> that we will have great difficulties again trying to stable him

and

> it could take him yet again another week. I also told him I wasn't

> trying to tell him what to do or obviously say that I know more -

I

> just told him that I'm very concerned about his blood sugars, he's

> the light of my life, and I only want the best care for him.

>

> So, the GI doc is going to have his nurse check with the insurance

> company tomorrow. And, I also mentioned that my Endo would be

happy

> to talk to him as well (The Endo called me today and said he would

> talk to him and agreed that considering his recent hospital

> admission - the D10 would definately be better - I'm sure my GI

doc

> did not appreciate me going behind his back on that one - but,

these

> people have to realize that I'm serious about my son's

healthcare).

> I'm not a physician - but, as I told the GI doc - I still need to

> voice my opinions and thoughts so that I at least feel I've done

> everything I could for my child.

>

> Okay - sorry so long. Had to get that off my chest. Thanks for

> listening.

>

> - H

>

> ---------------------------------

> Yahoo! Photos

> Got holiday prints? See all the ways to get quality prints in

your hands ASAP.

>

January 12, 2006

> This is a note to Ian's grandma....when you go to stay there with

...SEARCH THE HOUSE!! keeps saying she has NO t.v.

but she has slipped up!!! It's there somewhere grandma!!!!

>

> LOL

> Debby in Toronto.

Oh, Debby . . . you have no idea how I needed that laugh!

Dianne - Ian's Grandmother

January 12, 2006

Good for you . He has to appreciate that you know more on a subject than

he does and he should respect it especially since you spoke with your endo. If

doesn't like that well that's too bad he needs to get over that because people

will even talk to their own family doctors. I'm sure he's fine but then again,

who cares if he's not. I told a urologist that I would not do the treatment she

wanted for until she spoke with her endo and believe me I bugged the

endo's office everyday to find out the answer myself and if the endo (before Dr.

H) spoke with her. Now if it was Dr. H, the urologist would have been in for a

real rude awakening because I was when I told Dr. H the treatment course -

estrogen cream!!!!! - it's like crytonit (sp?)

B

and Kelli

advocate22003 wrote: