To read Lenah's story from the beginning, just go to the side bar under blog archive and start reading from May 2013.

Monday, September 30, 2013

Monday, September 30, 2013 Update

Today was another hard day. One of the cardiologists came to talk to me today and let me know that this morning there was a discussion between the cardiology team and the GI team about Lenah's case and there is concern about how to proceed with diagnosing and treating her liver issues.  It is highly likely that she has biliary atresia.  You can learn about it here. I guess I hadn't allowed myself the whole "if, then" discussion in my own head of how would things go if there were complications with the procedure and or treatment (Kasai procedure).  They were originally going to take her in to the OR Thursday  to perform a liver biopsy and cholangiogram under general anesthesia and if they did diagnose biliary atresia they would then perform the Kasai procedure at the same time.  There was discussion that being under anesthesia for so long might be difficult for her to recover from because of her heart condition.  So if she couldn't recover heart-wise she would have to be put on ECMO.  The other big "if-then" is if she does have biliary atresia and they do the Kasai and it fails and she needs immediate liver transplant.......will she even be considered a candidate for liver transplant because of her heart condition OR will they then try to list her for heart and liver transplant at the same time.  I honestly had never even considered the possibility that they would not do liver transplant because of her heart condition.  I feel like I am back at square one.  She has done so well recovering from her open heart surgery and now this.  I am distraught to say the least.  We are once again in desperate need of prayer.  We need wisdom for Lenah's doctors and for us.  Healing for Lenah.  Peace for us.

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