Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, January 31, 2016

The Car Wash

Angela doesn't have a diseased liver, she has a malformed liver vascular system. Her actual liver cells are (mostly) working fine. I've been trying to come up with an analogy to make it easier to understand. Think of a car wash.... People drive in and their cars get washed. The car wash works great and the cars come out shiny clean. But THOUSANDS of cars drive right past, full of dust and dirt. They could get clean, but they need to drive into the car wash! If only they would go into the car wash!!! But they don't, so they continue to get more and more dirty until they start to rust and erode. That is how Angela's liver functions, like the car wash. Thankfully Angela is really physically small and she stopped growing at an early age. If she was a larger adult there is no way her liver could keep up.

*People have asked about Angela traveling. She is as stable as she is ever going to be and her doctors gave the green light. No more ammonia checks. She will be forever high (she was at 125 at discharge) until they find a fix or she gets a new liver.  They don't want us to bring her in unless she has an acute change, such as seizure or another coma. She's on two new meds and still on restricted protein to prevent her spiking, which is hard on the body. We have a meeting with her team when we return. In the meantime we hope the other specialists they talk with come up some options. We know she needs a transplant in the future, the medical team needs to decide the "when" part.

** One person has repeatedly asked about Make A Wish and how it is Angela is still alive. Please refer to the Wish.org website for clarification. A child does not have to be terminally ill to qualify for a Wish. They need to have a life-threatening medical condition. "life threatening" and "terminally ill" are not the same. 

5 comments:

eliz said...

(((((HUGS))))))
and prayers!! Have FUN!! :o)

Debra Schneider said...

This little trip was an awesome idea. I can almost feel you gathering your family and recovering the joy of you all as a family. Love to you my friend and your little "tribe"!

Heather said...

The car wash is an excellent analogy! Enjoy your trip!

Kat said...

Prayers from Texas...

Leslie said...

That person that keeps asking about make a wish is a dick.