Wednesday, September 11, 2013

Things I Hate about PHA2

This post is about the things I hate about Princess having PHA2. It does not mean I love her less in anyway. There are just things I'm learning about dealing with this disease that I really don't like right now.

1. Medication -- Okay, Princess will be on medication the rest of her life. Right now, I can't stand giving her medication. She's been on medication for three months now. It's taken me that long to learn how to give it to her without her spitting it up or choking on it. Granted, she still chokes on it from time to time and occasionally she does still spit it out, but we both are getting better at it. I know one day she will be on just ONE medication. I am looking forward to that day.

2. Labs -- Oh how I hate it when we have labs for Princess. No parent likes to see their child in pain, but this sometimes just drives me nuts. Because we are drawing for potassium, it HAS to be done from a vein. No finger or heel sticks for this little one. And then of course there is always the chance of hemolysis. There is potassium not only in the blood serum, but also in the blood cells. When they check potassium, they are actually checking serum potassium. If something happens to cause the blood cells to burst, more potassium is released into the serum and therefore the sample is contaminated. When that happens we have to go in and have it redone. I know this is going to be frequent right now as we adjust her medication with her growing. I also know that at some point, she'll become a pro with it.

3. Reading Labels -- I've taken all the really high potassium foods out of our diet. (I'll post more on this later.) Because of it, I am having to read labels. I'm not sure yet how low potassium a diet Princess is going to be on. We don't go back to the nephrologist until November. And I'm sure the amount of potassium is going to change as we introduce more and more foods and come off of formula.

I'm sure there's going to be more things I hate about this disease, or maybe that will be everything, I'm not sure yet. We're just getting started on this journey. But I can tell you right now, things are okay. I've got a few questions for the cardiologist when we go back next week and about a dozen questions for the nephrologist when we go in November.

I'm also learning about the kidneys right now. I've got to become the expert on Princess's disease and since it involves the kidneys, I need to know what they do, how they do it, what the test to see if they are functioning correctly, ect. It's actually pretty amazing. These little bean shaped things are really fascinating. It's made me realize just how complex the Lord has made us. He made us in His image and what an image that is!

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