Monday, June 16, 2014

Slumber Party

Well we are not having the kind of super fun slumber party one would hope for... we are in the Hospital (hopefully just for the night) as Miss Lilliana's belly just keeps getting bigger and bigger :(

First let me say that Lilli is an ALL STAR patient. Once again she didn't even shed a tear during a blood draw and IV placement! Everyone in here thinks she is just about the most amazing kiddo EVER (I happen to agree) :) They blood work showed that her protein level is still low, but is very slightly better and not getting worse. They gave her a large dose of medication to help her pee off some extra fluid and holy cow is it working.

Unfortunately during the IV medication tears started to flow... and the darn thing was blown already, probably from drawing blood from the site first. But at least she got the meds and they are letting her be without an IV for tonight. Hopefully she wont need another one and we can go home.

They want to know the root cause of the PLE. There are a few options of what may be causing it...
1) her lymphatic system (which she has had massive issues with in the past)
2) pressure within her heart/veins
3) a stomach/ intestinal issue

The Dr on is determined to figure out the cause and not just say "heart failure"...

They did an X-ray and I'm assuming will do another echo tomorrow. I think they may recommend a heart catherization in which case we may ponder another trip to Boston.

Lilli makes this whole thing so easy! I'm so blessed to be her mommy. It's so amazing to have all these doctors who have seen her from the day she was born look at her in awe. Dr. Braunlin today said that the reason she is so healthy and strong is because of me... I think it's Lilli who makes me stronger.

Thanks for the prayers