Tuesday, November 5, 2013 Update

  Today Lenah had more self-breathing trials. She did pretty well, but started to get upset toward the end of them.  She has also had her pain and anti-anxiety meds reduced and that could have contributed to the fussiness.  They also started her on the Omegaven.  She is the 118th child to be given Omegaven in the current FDA study they are doing.  Only two hospitals in the US have been participating in this trial.  TCH and Boston Children's Hospital.  The Omegaven is a refined fish oil product developed in Germany.  It replaces the soy based lipids usually given in intravenous nutrition or total parenteral nutrition.  It seems that the other lipids may have actually injured Lenah's liver.  At this point, we are very much hoping that that is what is wrong with her liver.  The specialist I spoke to today said that her bilirubin may go up at first as her body begins clearing the toxins from her liver.  If the soy lipids were the problem, after the initial increase in liver stats, they should begin decreasing and then in six to ten weeks she should be tremendously better.

Please pray for Lenah's baby neighbor, Baby E.  He had some trouble today. Thank you for checking in and continuing to pray for Lenah.

  Lenah slept through my visit today. Even when she was fussing, she kept her eyes closed.