Dave just got off the phone with the FDA and they are ready to issue Ashley's number for compassionate use of Omegaven!
They have had the number since Friday and have been leaving messages daily with the staff at our surgeon's office. The contact at the FDA told Dave that she will release the number to our surgeon immediately as soon as he gets on the phone with her.
Step 1 was obtaining the number. Now we need to figure out how to get it and how we are going to pay for it. No matter what it takes we are committed to giving Ashley Kate the very best chance at a successful re-transplant and life. We believe Omegaven will help her liver stabilize while we wait for organs and give her more time. If we are denied re-transplant then we KNOW she will have the longest and best quality of life while being TPN dependant. Its a huge accomplishment to be at this point.
We know a home health company out of Houston who has Omegaven and we will begin the process of trying to switch our services over to them as soon as I get back from her doctor's appointment tomorrow.
Its a little scary starting on an experimental drug. We know her liver will get worse before it gets better. That fact is well documented, but we have looked over case study after case study and read many, many, many testimonials of parents whose children's bilirubin levels have stabilized within a month or so on Omegaven. Our hope is to have those results for Ashley Kate. To see her eyes become clear again will be an amazing day.
Its a step in the right direction for us. We have been so blessed today with this news. Thank you, thank you, thank you for praying us to this place.
Its been a good day. Yesterday was a little rough(Ash and I were in an accident and the front of our car is all crunched:( ) So this news has been such a blessing!