Today we went the nephrologist (kidney specialist) at Phoenix Children's Hospital. This doctor was amazing and really helped me understand what challenges we have ahead of us. When we were in the emergency room with Myla she was a perfect angel. She let the doctors do what even they needed and was so sweet. Well today was not the case. If a doctor came with in 10 feet of her she started screaming. She was really traumatized by the catheter and poking they did the other night.
What I learned is first that Myla will have to be on steroids for the next 12 to 18 weeks. He talked about the mood changes we will be experiences and the weight gain. Now with the mood changes I have already started to see them and let me just apologize in advance for what she might do to you or your kids. Now don't be scared really!?!
The part that upset me the most is she will probably struggle with this on and off until she hits her teens. Once she heals from his episode they gave me tester strips to see if her kidneys are leaking protein again. Then back on steroids. Now if she keeps relapsing they will do a biopsy on her kidneys to get a better what is really going on.
Myla looks so much better today and has gone to the bathroom five times today. Hurray!! She will be "puffy" for quite a while. My sister was on steroids most of her childhood and people always made comments about how she looked. It made her feel really bad about herself. So if I could ask that people do not say anything with in ear shot of her. I know that I can not control everything or everyone but I would like to try to avoid some of it.
Well we are flying home tomorrow. See everyone soon!