Tuesday, September 10, 2013

Plan C?

I have kind of lost count of where we are at with the drama behind what is causing the build-up of fluid in Alexa's abdomen.
Alexa had an ultrasound done on Thursday which revealed that she had the EXACT same amount of fluid from when her ascites first popped up a month ago.  It has not gone up--And that is good! But it had not gone down either--not so good.
That kind of baffled me, because her stomach HAS gone down--I have been measuring faithfully every morning and it has gone down from 26 inches to 23 inches. She has made slow but steady progress there. Her stomach is also much softer. She is MUCH more comfortable and eating much more (of the foods she likes of course--like these Corn Flakes French Toast which she helped prepare. And by the way, thank you to whoever first pinned this on Pinterest because they are sooooo delicious!)

BUT the ultrasound is showing us something different! In addition to the fluid, the ultrasound also happened to reveal some narrowing around the connections in her vessels.  Now this could be completely incidental--It could have always been that way, and may be HER normal.  It may or may not have anything to do with the ascites.  However, they are looking for something, anything that will lead to why she developed the extra fluid and why it has not gone down as quickly as they have hoped.

So we move to plan C--At least I think this is plan C or is it D? As I said, I've lost count....
Yesterday after the surgeon and GI docs had a look at the ultrasound and her lab work up in detail, it was determined that they would like to schedule a CT angiogram.  The angiogram will get a detailed look at the vessels and check flow, pressure, etc.

Now this is normally the point, where we insert my major freak out.  Only this time, I am not!

A friend told me to look at Alexa and how she is doing to get a sense of how things are.  Well look at this face as she steals my fruit and granola yogurt.

She is happy! She is excited to go to school--literally runs on the way there and enters the yard without so much as a kiss or hug (mommy is not liking that at all!).  We have extended her day this week to 2:30pm!

She is enjoying trying new foods--as long as it does not look like meat!  Although she ate spaghetti with meat sauce and told me that she liked that "brown stuff". LOL.  When I told her it was meat, she looked at it a bit more closely and said "see mommy, when you mix it with the pasta, you don't taste it--I like it!"  That's a win in my books!

She has been doing extra homework with me in the afternoons to make up for the time she is missing from school.  And she is doing it all really well!  Her memory is so good--she remembers tiny details that I could never. Her vocabulary and sentence structure has sky-rocketed--she talks a mile a minute! And continues to be the most sweetest, thoughtful little girl.  Even when I forget, every night she reminds me to say our prayers for her vavo (my grandmother) who is in the hospital as well as any of her UCD family who might be in the hospital.

So, I look at her and apart from her being slightly too skinny--she has lost a ton of weight, I know she is doing fine right now!  We promised to take things one day at a time.  And that's what I am doing.  I will have faith and pray that the angiogram does not show us anything alarming that requires "intervening".  We will continue to work on her medicine dosing until they have reached the perfect balance her body wants.  I will have faith in my girl and not freak out--because she wouldn't!

But just to be on the safe side, would you mind throwing out a prayer or two to ensure those pesky vessel connections do not become a thorn in my side?