Evie Update

Evie polishes up her computer skills:



As some of you may know, Evie has been on seven medications for over a year now. (When she first came home from her third surgery in March 2009, she was on thirteen meds, so I am not complaining about seven!) Three of those meds are diuretics which help rid her heart and lungs of excess fluids.

We are going to see a pediatric nephrologist (kidney specialist) this week. Both Evie's cardiologist and pediatrician want to make sure that all these medications are not adversely affecting her kidneys. Also, she has had bloodwork and urine analysis done several time in the last few months and a very small trace amount of blood has consistently shown up in her urine. There is no urinary tract infection, however, so that is another reason her doctors are concerned about her kidneys.

Evie has also developed a condition called polycythemia. This is an increase in red blood cells which, in her case, is caused by her low blood oxygen levels. Her blood flows more "sluggishly," and there is a chance of her having a stroke. To avoid this, I give her half a baby aspirin every day. In researching polycythemia, Francis and I read that one of the treatments (in adults) is phlebotomy - also known as blood-letting! It sounds so medieval!

Evie had blood work done this week, and her cardiologist decided to stop two of her diuretics. We have been instructed to make her drink as much as she possibly can. Unfortunaltely, Evie just doesn't want to do what she doesn't want to do! We have a week to get her on track before we have to repeat the bloodwork. In the meantime, she is working a little harder to breathe and her face is puffy. Please say an extra prayer for her this week!


Here is Evie at my computer: