Monday, December 19, 2011

"4-6 Weeks"

When Alex was first given the diagnosis of HSP on November 20, we were told that he would be suffering form the symptoms for 4-6 weeks.

We've been thorugh a lot of ups and downs over the past month, and I've eagerly been anticipating the arrival of our 4-6 week mark. Given that he first had symptoms of HSP between November 13-16, I was hopeful we would be over this by now.

Alas, as the pediatric nephrologist told us last week, "4-6 weeks is the textbook case, and not all kids read the textbook."

Outwardly, Alex has been looking significantly better. The spots are fading. He's had a lot more energy, and almost no joint pain.

He's puffy - very, very puffy - the result of taking steroids for the past month.

As an example, here he was just a few days before he came down with HSP.

 I was having lunch with the boys at school, and snapped a picture of him and Liam together to text to Carl.

And here he is when we tried to take pictures for Chris and Al's holiday card last week. He's all puffy, he's got dark circles under his eyes, and no amount of chapstick is helping his cracked, chapped lips.

But its not all outside appearances with HSP. We were warned that kidney problems are the biggest risk associated with HSP, and we thought things were okay. Two weeks ago, however, the amounts of blood and protein in his urine were rising, and his blood pressure is rising, so we were referred to a pediatric nephrologist. We like him, which is good, because he and his partner are the only two in Austin. He definitely made us feel more comfortable about Alex's health, and Alex really liked him. And Alex really, really liked the Star Wars themed patient room.

First up, Dr. Simon recommended a 24 hour urine collection. We didn't want him to miss more school than necessary, and since the labs are closed on Sundays, we started it yesterday, at 5:37 am when Alex woke up. The big orange jug had to refrigerated, which I think was one of the most disgusting things I've ever had to do. Mom said it could be worse, it could be stool samples, but still... I'll be sanitizing the fridge tonight. I drove the orange jug to the labs this morning , and now we have to wait a week for the results to come back and be analyzed.

In the meantime, Ryan was brotherly enough to 'share' his strep throat with Alex. Mom took him to the doctor today when he woke up not feeling well. He didn't have a sore throat, he just didn't feel well, was complaining about being hot and then cold, and his legs were hurting. But we can't take any risks while he has HSP.

Next to the kidney problems, a reduced ability at fighting sicknesses is the other big risk with HSP. Which means we are batting 0-2 when it comes to HSP complications. I still keep hoping that we will wake up next week and everything will be better.

It hasn't happened yet, but it sure would be nice to have a Christmas miracle and get Alex's health back to normal.

1 comment:

  1. My goodness, Annalynn. I've been following on FB, but have been waaaay behind reading blogs. I am praying for all of you and I really hope you get your Christmas miracle!



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