Friday, February 27
Wow. I just got woken up by a phone call from Dr. Puder in Boston (the one running the Omegaven trials). I emailed him last night, just to sort of update him on the situation and the fact that it's looking more and more like Omegaven may be our next step... and he called as early as he possibly could without being considered rude (7 AM our time).
Once again, he said that if we need to go to Boston and get Faith on Omegaven, just to let him know and he will get me in touch with the people there I need to talk to (the social worker and intake nurse). He said Tricare has paid for it in the past, so that was good news since that is what Faith will have for insurance as of the 1st of March. He explained the process a little more, too.
We would go to Boston. There would be an inpatient stay of about 48 hours (that's nothing!) and then we would stay somewhere else (he said there is hospital housing that is around $20/night but sometimes free). We would have to stay in Boston (or the area) until Faith's direct bilirubin measures less than 2. Just to give you an idea, right now it is 6.1 (which is high enough to qualify under their compassionate use guidelines!). Then we would have to go back every 2 months, or until Faith is off TPN. But he said they would work like crazy to get her off the TPN, and that they have experimental drugs for motility and stuff, too.
He thought they were crazy for bringing up the small bowel transplant, and was surprised that Dr. Soden is the one who mentioned it. He said he couldn't believe it, and that the thing with the small bowel transplants is that they don't even really work. He said he would be much more in favor of turning things around for her liver so that she can have the time to get the rest working.
SO- on my agenda today:
Talk to Dr. Partrick and Dr. Soden about what we do if feeds don't work. Ask if we can get on Omegaven here, and if we can't, let them know we're looking into our options for that as our next step.
Email the leaders of the trial in Omaha to see what they have to say.
(Oh, and go to Target and pick up my new glasses.)