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maddy update from NY

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Hello everyone,

Madison's MRI was fine so I met with Dr. H and the GI doc today and

they are going to do another gastric emptying study tomorrow and also an

endoscopy. They have found that she was severly constipated and her belly was

full of

air despite our constant venting. She is now getting Miralax which I know

many of you are familiar with and Protonix which isn't really approved in

children however nothing else helped so they didn't have a choice. she is

currently

on the TPN and getting the total fat. What I do know for sure is that Maddy

will come home the TPN and NO GI FEEDS untill Dr. Spigland is back from vacation

(around sept 7th ) . When Dr. Spigland gets back she is going to have her

nissan repaired and the g tube removed. They will place a G-J instead but it

will

be moved higher up on her belly.

They are going to start her back on food when the edoscopy and Gastric

emptying study are done however her sugars are already in the 150's from the TPN

so

Dr. H doesn't want her getting carbs. Great what doesn't have CARBS!!!!

Today she is much happier we are playing in the play room and she acually

talked to Dr. H today!!!! Big improvemnet for her LOL. Dr. H is going to deal

with Maddy's insurance company herself so hopefully there won't be any

problems.

Well i'll post again later.

Thanks to everyone for the support,

Chrissy

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