Sunday, May 26, 2013

Change of Plans...

(This picture was taken the morning of Mother's Day, it's not everyday that we get a picture of all four of them, all in the pj's:)


Home sweet home!  After a difficult and emotional week, we came home late Friday night.  After several emotional discussions, we are postponing Lucy's stent removal for a few more weeks.  When this was decided, we quickly made plans to come home.  Lucy is not great, but she is doing better.  We can do for Lucy everything that they were doing for her in the hospital,  with a lot of help.

During surgical rounds Wednesday morning there was an interesting discussion between the docs about Lucy's stent, in particular its size in relation to her bile duct, it's "ginormous" according to many of the docs.  Our surgeon had some thoughts about the entire procedure and wanted to find out more specifics about the stent in Lucy's bile duct, so he called the doc in Baltimore who did the stent placement on Lucy to discuss his concerns.  Research shows that these types of stents in adults begin to embed into the wall of the bile duct after six to eight weeks.  However, there are no studies done in pediatrics to determine how long it takes before it embeds into the wall of a child's bile duct, simply because they are not commonly used in pediatrics.  After doing another cholangiogram on Thursday to check for leaks we all felt that even though the study showed that there are none, her site needs more time to heal before we stress it by putting it to use.  After weighing the risks vs. the benefits yet again, we all felt that it was best to wait a few more weeks before testing and using her new drain.  If we use it too soon the risk of it leaking, making her very sick, is very real.  The risk of her stent embedding into the wall of her bile duct is very real too, but is worth taking when considering the alternatives.  We need this to work!

Thanks as always for your thoughts and prayers, love and support!

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