Ups and Downs

When they told us in the ER that Grace's sugar was over 500 I had no idea what that meant. I mean, I knew it wasn't good because everyone kept telling us over and over what her number was but if you had asked me what a "normal" blood sugar should be, I wouldn't have had any idea. As the days ticked by at CHOP, I became fixated on what Grace's blood sugar number was. It slowly started to come down but I was extremely anxious that it was no where close to being in range. We learned in our classes that we are aiming for a number between 70-180. If it goes above 240, we have to test Grace's urine for the presence of ketones. Ketones are bad news. They occur when there's not enough insulin in the body. Essentially it means your body is burning fat for energy. In our classes we learned not to be too fixated with the high numbers. Those would be coming down. What we needed to super vigilant about were the lows.

I was not even remotely interested in hearing about the "lows" when all we were seeing were the "highs." But now that Grace's sugar is, more often than not, in range, we've experienced some of those lows and they ain't pretty. When Grace's sugar is high, she gets crabby and lethargic. When her number is low she gets super pale, washed out, headachey. Going too low (hyperglycemia) can be very, very bad. When it's high, it's annoying and needs correction but there's nothing immediately dangerous about it. When it goes low, there is a need to act quickly to bring it back up. If left untreated, the worst case scenario is shock and coma. We were assured that this is very rare but you need to stay on top of it. Grace is doing an awesome job of actually telling us when she thinks she is going low. She'll announce "I think I should test my sugar, I think it's low." Sometimes she seems fine and it's a little low. Other times she just looks pale and we know something is up. Physical activity can bring sugar down and during the week of soccer camp we saw that a few times. Misdosing insulin can also bring it down too low. If we miscount the carbs in her meal and error on the high side, too much insulin takes it too low. This is why, if you dine out with us, you'll see some serious faces as we study Grace's plate trying to determine how much she ate, what the carbs *may* have been, and how much we should dose. Big chain restaurants have information sheets on meals. I typically hate big chain restaurants. Mom and pop places (places I like) don't have that info and the guessing game begins.

To fix a low sugar, we carry mini-juice boxes and gummy candies with us. 15 grams of sugar should bring up her sugar by 50 points. We give a drink and wait 15-20 minutes to test again. Usually that does the trick. We typically test right before Grace goes to bed because she needs to have a blood sugar of over 100 in case it dips low in the night. Last night Grace said it might be low and she was right: 64. Of course it was a night when everyone was having fun, running around like idiots, and about 2 hours off their bedtime. 64 is pretty low for before bed so I juice box'd it and some animal crackers and that did the trick. About midnight Grace came into our room sobbing and sobbing and sobbing. We kept asking if she was ok, if something hurt, was it a bad dream? She was incoherent and my first thought was she must have dipped low again. So we hurriedly tested her sugar and it was fine. I have no idea what was going on there but after a half an hour she calmed down and went back to bed. I wish I went back to bed so quickly. That adrenaline surge is enough to keep you awake for a loooong time. Thank goodness for vacations and naps. And cocktail hour.