Tuesday, March 10
We thought towards the end of last week that Faith's eyes are looking more yellow than they had been, so we knew her numbers would be different again. Her labs this week are a little worse, her direct bili is back up over 6, and her ALT (liver enzymes) went up to 325 from 299... I really hope the Boston stuff can happen quickly!
We took a field trip this morning to fleuroscopy again. I think Faith has a thing for Fleuro Room 1, she's down there at least once a week. As much as we don't want her to have a more permanent feeding tube, we don't want her to have NJ tubes put down every other day. So, we're hoping they'll decide soon to put in a G-J tube to save her some of that stress. They've said they won't even think about it for another couple of weeks, though.
We don't like the idea of tube feeds, but really until they figure out why she's not able to tolerate feeds to her stomach anymore, it's our only option. So we've come to terms with the fact that she may be on tube feeds for awhile... and realistically, she may be on a combination of tube feeds and TPN for quite awhile, since there's no magic wand to wave and suddenly make her tolerate full feeds.
I've been paying more attention to her Broviac care, since I know I'll have to take that over soon. And I've been asking more questions about everything, too, just to try and prepare myself for all of it.
I realized the other day I haven't really posted much info about the Omegaven, even though I've talked about it alot. There is a good amount of information on this website. It's not the only reason we want to go to Boston though, we are really looking for a second opinion on all of Faith's issues, and we're hoping that since there is a whole team of doctors there that specialize in issues like hers, maybe they'll have some different ideas and will be able to get things working like they should.
3 weeks ago