Monday, October 14, 2013 Update

Well, today was a quiet day for Lenah.  Not so much for me.  I had two difficult discussions today.  One with Lenah's cardiologist and the other with her GI doctor.  It seems we are back at the place we were before Lenah developed NEC and we thought we were going to lose her immediately.  They still suspect that Lenah has Biliary Atresia despite the changes in her liver labs.  Her intestines are still expanded with air, but have not perforated.  They think she has some kind of stricture.  They are thinking that they will need to do a colostomy, but do not know how extensive it will be.  Tomorrow she will have been on antibiotics for 14 days, so the next course of diagnosis and treatment will need to be sought.  Or we could just choose comfort care for her and they will not do anymore for her but keep her comfortable.  She can not live long term with non-functioning bowels and a possible non-functioning liver.  If they are going to have to do intestinal surgery to re-sect her intestines and fix any mal-rotation if present, they might as well do the liver biopsy and cholangiogram if possible at the same time.  At this point, without repairing her intestines her prognosis is not good.  Also, if her intestines are in bad condition, they may not be able to do the Kasai if she does indeed have BA.  So, if her intestines are not functioning well enough for the Kasai, she would just have to be treated with medication until she received a liver transplant IF they consider her "eligible" for liver transplant, which they may not because of her heart condition.  SO, here we are again.  I would love to walk in tomorrow and be told that her morning x-ray shows no sign of distention in her intestines and she looks well.  That would be amazing.  That would be a downright miracle.  They would still probably want to do the liver biopsy and cholangiogram to rule out BA, but at least her intestines might be well enough to do the Kasai if she needs it.  This is such a complicated situation.  For all of us.    At this point, I feel like we will never be "out of the woods" with Lenah.  With all of her issues, life will always be lived watching for the next situation to be managed.  I am not complaining, it is just so foreign to me, and at times I question if I am up to the task.  So, here we are once again, in need of wisdom and strength.  As we are every day.  Thank you for continuing to pray for Lenah and the rest of us.

 Today they removed her chest tubes.  They also reduced the flow on the ventilator.  All other things remained about the same today.

  Here is her daily picture: