Maddy update Saturday

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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

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