Omegaven saga continues

I first would like to thank everyone who has followed along and given anything they can to help us out. Everything is appreciated so much.

Molly is holding steady. Her girth is still at 54 cm. Her weight is up but it seems like the fluid is slowly coming off. Her ammonia is staying around 45-70, which is awesome. Her bili is staying about the same, which is a lot lower than it had been. Because of this, she is less yellow and jaundiced.

I spoke with the attending, Dr. Luckett, yesterday about the omegaven. I'll try to keep this as short as I can. There is a doctor, let's call her Dr. O. I do not know what her real name is. Dr. O is a GI doctor who would be the one giving the omegaven. Dr. O is here at Dallas children's. She has about 2 months worth of omegaven here at our hospital. Apparently there is a lot of red tape to get more omegaven, but the big obstacle is funding. Because this med is considered experimental, we cannot be billed for it. This means that the hospital has to foot the bill. Which means they have to find funding for it. Another aspect is that 3 of the top 5 children's hospitals in the US are using omegaven, but Dallas is not. If we were to transfer to one of those top 3 (Houston), it wouldn't look very good for Dallas. It would look like they aren't as good as their competitors. This is good for us because it means they want to get it for us here. But then there is that funding issue. I asked Dr. Luckett if we can start a fund for it. He said he was going to ask Dr. O about that and it has been done in the past. I also told him we were thinking of going to the news to tell them about it. He said, I like the way you think. It's hard for us to fathom that there is a drug out there that can potentially save our daughter's life and we cannot get it because of a hospital funding issue.

Here is a link to a news story done about omegaven awhile back. I urge you all to take the time to read this. Thank you!

http://rockcenter.nbcnews.com/_news/2013/06/07/18833434-drug-treatment-omegaven-that-could-save-infants-lives-not-yet-approved-by-fda?lite