Blood Belongs In The Body

Journal Entry, May 12, 2004

A'ight, Self, here's the scoop. Aorta is too small-- surgery looks bad. They'll only do it if it reaches the point where there's really no choice. We give him six milligrams a day of Propranolol, a beta-blocker to keep his heart from working so hard. Hopefully it won't thicken any more.

Creatnine went down to 2.0, which is positive. We're discussing the possibility of dialysis, which, frankly, terrifies me. I remember visiting Grandma in the hospital one time when she was really, really sick, and the tubes running in and out frightened me. That comes to mind when I think of running Niko's blood out of his body. There's such a primitive fear when it comes to blood...it should never be outside of the body. Ever.

His phosphorus is too high, so we're trying to get this certain formula, and I just got a phone call five minutes ago saying his calcium is too high, as well. They're afraid of seizures, so I'm supposed to mix Similac 60:40 with Calci-lo. (When we actually can find some.) The Nephrology clinic sent me home with a big book on Chronic Renal insufficiency, and how people with CRI need certain diets, medications, and care. Next week I learn how to inject him daily with a growth hormone.

We started physical therapy at a school instead of the hospital, and he seems to like it there as well. We'd like to get him to a bi-weekly preschool there when he turns 18 months old. They do therapy and other things that will help him.

Meanwhile, no job. I remember how hard I searched and how frustrated I was when I was looking for a job. We want to stay here because of the care for Niko. We really love it here and have great friends...isn't that why Luke went to school? To find a great job?

A little overwhelmed. I'm near tears almost all of the time. I hope to get organized tomorrow.