Monday, July 17, 2006

A ( not so gentle) reminder

Holden has had allstar games this week. Yesterday was a marathon day. We arrived at the ballpark at 12:45 PM. Holden's game started at 2 PM. They won that game so we had to wait around for another one, that didn't begin until 5-5:30.

During all this time, Riley played in the dirt. He ran around kicking a soccer ball. He played in some water. Because of all the running around, when another little boy came up with a sucker and Riley wanted one, he was able to have not only one, but two throughout the day. His sugars were great.

He ate a hot dog at the game. When the game ended at 7:30, we went to a restaurant to eat. Riley had already had one supper, but he ate again. Actually, he ate a lot. This supper included a cupcake and a few M & M s (M & M s were given prior to the meal due to a sugar of 65). Still, one hour after supper (even though you're told not to test that soon after a meal), he was 228. Not bad at all.

We finally got home around 9:30 PM. It was time for his usual bedtime snack time. His sugar was 138. Too low for bedtime. Also, he had 0.20 units of insulin on board from supper. So, he got an uncovered snack, like he does most nights.

After Riley had gone to sleep, I commented to Michael about how great Riley's sugars had been. I should have just kept my big mouth shut. I told him how it was so nice that he could have the suckers, cupcake, and M & M s like a normal 4 year old. And, by "normal", I don't mean Riley is "abnormal", but if you have a child with D you know what I mean.

I read it on other blogs and I've said it myself: "People with Type 1 D can eat whatever anyone else can, they just have to cover it with insulin". While this sounds great in theory, it's not entirely true. Yes, they can eat what everyone else eats, but no matter how hard you try and how vigilant you are about giving what you think is the right amount of insulin, their sugars are going to be affected. You may get it just right some times, but there will be times where that cupcake or yeast roll just totally screw up the sugar.

Anyway, I felt good about his D and the day. When we finally went to bed around 11:30, a quick sugar checked revealed a sugar of 294. Not great, but I knew the snack would shoot it up a bit and also took into account all the extra activity during the day that was sure to drop his sugar during the night.

To be on the safe side, Michael got up an hour and a half later to check again. This time his sugar was 434!! I quickly started going through all the reasons this could be. He could have gone low and rebounded, that bite of Mac 'N Cheese he ate could be kicking in, or, of course, he could have a bad set. A check on his set revealed it was still in and there wasn't any blood in the tubing or anything else that would reveal that there was anything wrong with the set. He got a correction, but not as much as the pump suggested. We tend to be conservative with his corrections in the middle of the night, because a lot of times he'll drop very quickly and way too much. An hour later, he's 428. Hmmm, not much difference, but we really didn't give him a lot of insulin.

I made Riley crawl out of bed at 2 in the morning, so I could get him to go to the bathroom so I could check his ketones. They were OK so far, so I gave another correction. But, the next check (393) didn't indicate that any of this was working. So, out came the old set and in went a new one. We corrected again. We were conservative again because we have no idea if he received any of the previous corrections and if he did, how much he actually received. He was 292 at his next check. Then, 138. So, mystery solved, it was the set.

The times for sugar checks were 1:03 AM, 2:09 AM, 3:21 AM, 4:24 AM, 5:52 AM, and 8:01 AM. Since I am still doing everything with one hand all of the nighttime checks have become Michael's responsibility. I can check a sugar with one hand , but only when Riley is cooperating. At night, he'll sometimes close his hand or roll over and I have no way of stopping him. I have also not changed a set since my surgery. Even though I woke up with each sugar check and helped hold Riley for the set change, most of it fell on Michael. He got up basically every hour and then spent about 30 minutes doing a set change. Then, he got up and went to work in the sweltering heat all day. I can only imagine how he's feels right now.

So, that "normal" feeling quickly went out the window. I was not- so- gently reminded that my son has a chronic disease and no matter how hard I try to pretend that he's just like very other 4 year old, the fact remains that he can't be carefree about what he eats..ever.

This is one reason I'm trying to organize a local walk to raise money for The Lee Iacocca Foundation. I can't just sit back and let this disease win. I want to be able to look Riley in the eyes and tell him, I've done everything I can to get rid of this disease.


Anonymous said...

I can't tell you how many times this has happened to us. Too many to count. It's our biggest frustration with the pump. One thing that seems to be consistent though is that it's happening a lot on the 3rd day of the site and especially lately (hot days of summer). So we're going to try to change out every other day now.

Shannon said...

I could've written this entire post word for word...right down to the Join Lee Now part.

In theory they can eat what they want, but really, it causes so much more work.

I agree with and have experienced every sentence in this post!