August

Posted on 18. Jan, 2010 by Jillian in Glycogen Storage Disease, Glycogen Storage Disease Type 1A, Hospitals, Sickness

Ok, since I haven’t blogged in a few months… here’s a quick recap of what’s been going on. What we’ve done, what we’ve learned, etc.

August: Trauma/Drama of the month: Dallin (our then 2 year old) “broke his leg good”- according to the E.R. doctor- in a freak slide accident.
What we learned: ALWAYS call Dr. Weinstein. I thought, “Hey, it’s a broken bone. What does that have to do with a liver disease. I don’t want to bother such a busy man.” WRONG! Fast forward two weeks after the accident, the orthopedic surgeon who had calmly reassured me that he was so young that he’d heal really quickly, is looking at the new x-rays a little dumbfounded and again promising that he’ll heal quickly, just not as quickly as he had expected. “The bones don’t look any more brittle than any other 2 year old’s”. He again reassured me, and told me that there was no need to “freak out” or call Dr. Weinstein. So, I e-mailed our GSD specialist extraordinaire instead- asking if we should up his calcium supplement. A few minutes later he responded and asked if we were getting him enough Vitamin D (800 IU a day) since we live so far north.
He also told me that high lactates will impair healing, so it was very important to maximize control (ie test blood sugars more frequently, and make sure he’s eating all of his scheduled meals/ snacks). Also, pain will also cause lactates to go up! (my exclamation point and bold letters- not his). I had no idea! I hadn’t been giving him too much medication to control the pain because he was acting OK, and I try to avoid meds that may cause liver damage as much as possible. Bad Mom moment.
But in my defense, the kid has an amazing pain tolerance. The E.R. Doctor wouldn’t see him at first because two little 2 year old boys came in with possible broken appendages at the same time. Dallin was sniffling, and only I could tell was in a decent amount of pain, whereas the other little boy was demonstrating his enormous lung capacity at an earsplitting pitch. So, they had us wait for a while while they treated the other boy. His arm had a hairline fracture. When they finally got around to x-raying Dallin (they weren’t entirely convinced that it was necessary) it showed a spiral fracture as well as a stress fracture.
Anyway, I followed Dr. Weinstein’s advice and maximized pain and b/g control. He healed at a faster rate, but still slower than anticipated. Again, they promised there was no way that he would still have a cast in October.

Oh, and we took the boys camping. In a tent. Broken leg and all. We are brave.  Mark caught a fish, Ethan got to roast a beloved hot dog over a fire pit, Jonny got to hold a frog, and Dallin wacked us with his  full leg cast in the middle of the night as Ben and I tried to give 2 am cornstarch in the 5 man tent all 6 of us were sleeping in.  Good times.