needing prayer

Monday, November 24, evening

I'm feeling extra discouraged today.

I just got to talk to one of Faith's primary surgeons (FINALLY- I hadn't seen any of them in at least 2 days). Her head surgeon (Dr. Partrick) did not think doing a tap would be a good idea, so they aren't going to do that. This surgeon (Dr. S, I can't ever remember his last name) is one of the ones just below Dr. Partrick, on the same level as Dr. Potter I think. He was able to answer a few questions for me, and help me stop worrying, but it's kind of more of the same... her swelling is just an inflammatory response from the surgery (he didn't seem to think it is necessarily abnormal or unexpected that she's still swollen, despite what the surgeon this morning said), and they're doing everything they can really to get it off. There really aren't any lasting effects from her being swollen for so long, other than sometimes the fluid can back up into her lungs, which causes breathing problems. They had already told me there was fluid in her lungs, and today Mary Ann told me that there's fluid outside of her lungs, too. That's why it's so hard for her to breathe. He also explained that some of it has to do with the fact that her little liver is working so hard to process all of these medications they've had to put her on.

Mary Ann left today at 3, Rachel is here now until shift change at 7.

I am feeling very frustrated that it seems like they're doing everything they can about her swelling, but none of it is working. I am glad that I put that headband on her, because it gives me an easy way to tell how swollen she is at any given time, without going back and comparing pictures... Her bed is still tilted... but it doesn't really seem like that's doing much in terms of helping the fluid come off. She pees a lot after she has the Lasix... but not so much when she doesn't have it.

Please, I know that everyone is praying for us, but please pray specifically that Faith's swelling resolves soon, that her little organs continue to function as they should, and that God will continue to give me strength, PATIENCE, and encouragement through this wait-and-see game... patience has never been my strong point...

Thank you to everyone for continuing to keep us in your thoughts and prayers. I hope that the news will get better soon.

I take a picture every time I write a post... but looking at this one compared to the last one, they look almost the same. I guess you can tell where Faith likes to keep her arms and hands... not too surprising since her hands were up in her face for EVERY ultrasound I had (and I had a lot of them!). I don't think she's going to be a big fan of swaddling with her arms in...