After much discussion with Zachary's doctors we have decided it is now time for Omegaven.

Zachary gets his nutrition in two forms. One called TPN (total parental nutrition) which contains carbohydrates and proteins, the other called Intralipid which is fat -- or what we call his vanilla milkshake. While these solutions help him grow, they also cause liver damage. One of the main numbers we watch is the bilirubin. A normal level is .03. Anything above 2.0 is considered cholistatis of the liver. Zachary's bilirubin is now at 10.

Dr. Puder in Boston believes that it is the intralipid that causes liver damage. Omegaven is a form of fat that is Omega 3 fatty acid based, Intralipid fat is Omega 6 fatty acid. We are hoping that the Omega 3 fat or Omegaven will be our answer for Zachary's liver disease.

We are told that it takes 6-8 weeks to see benefit. If this works as it has worked for 49 out of 50 children currently on the drug then Zachary could be taken off the liver portion of the transplant list.

Our wonderful GI doctor Lynda Brady, and pharmacist, Dr. Kelly Burch have been able to get Omegaven for us in St. Louis. Most of the babies on Omegaven are in Boston, a few in Pittsburgh and we just recently met one who started in Florida.

For more information on Omegaven see: What is Omegaven?