Night with T1D

Some days I really feel like Jase having T1D has almost just become part of the routine now and then times like last night the very real fear of loosing him is brought to light. There is so much unpredictability with this diagnosis. How does one carb effect his blood glucose vs another, what time of day is it, will he be active, etc.  So much guessing and if you guess wrong - it can be deadly. 

During the day I don't seem to worry as much. Jase has been pretty great on telling us when he isn't feeling well and we can now sort of pick up on cues from his behavior.  This is so helpful, we can test his blood sugar, or now, look at the Dexcom - and see where he's at. Night... night is different. High blood sugar is something to worry about if left high too long (what happened to him before his diagnosis came - Ketoacidosis - can be deadly), but low... low blood sugar if Jase is already asleep... this keeps me awake at night sometimes.

Jases blood sugar has been dropping after dinner for a few nights now. We spoke with his endocrinologist team earlier in the week and adjusted some things to see if that would help. I like to give changes at least a full 24 hours to see a change, so we were on this course of action. The first night of the changes he was at 201 at his bedtime check (we had given him a sack before he went to sleep to prevent a low). Scott and I leaned toward not dosing (we're supposed to give 1/2 a unit if between 200-250) because prior nights his blood sugars had dropped throughout the night, he wasn't at a dangerous level and based on a check a few minutes before it looked like he was on a downhill trend (We haven't received the Dexcom at this point). Im so happy we didn't dose him that night, based on what happened last night. Gut, God speaking to us, whatever you want to call it... it just didn't feel right to give him insulin at that 9PM check. 

Last night was night two of the changes to medicine doses. Like the prior nights he dropped after dinner again. We gave him a snack, he went up higher then we'd like to see, but that's OK. Right now we are set to check him basically every three hours, so we check at breakfast, lunch (between lunch/dinner if he eats something) before dinner and then again around 9-10PM. (and the 2am check overnight). With the rise we knew we'd be giving insulin around the 9-10pm check if he hadn't gone down. We checked him at 9PM and he was over 250 (for him this calls for one unit of insulin). We dosed and continued to watch his Dexcom to see if he would lower and level out. He seemed to be lowering and so we went to sleep. Around 11:30PM Jase came in our room because his iPod was beeping - he was 83, red circle and double arrows down (Dexcom predicting he'd be at 55 in 20 minutes if we did nothing - not good). When the Dexcom shows double arrows any way we are to check his blood sugar with a finger prick. We did this and it showed the same number. Now, with the finger prick we can't see what way he's going, so we trust the Dexcom and give him some juice. His blood sugar went up as it should and eventually leveled out the rest of the night. Jase didn't fall back asleep until around 3AM. He wouldn't tell us what was wrong, but I think maybe sugar rush and he knows that was scary, even though I feel like Scott and I were calm, a beeping waking you up in the middle of the night is no fun!

All I kept thinking was THANK YOU GOD the Dexcom came yesterday and we put it on. Without that, we would have done everything the same, but wouldn't have checked him until 2AM - nothing would have beeped to wake Jase or us up. What we would have found at 2AM scares the *hit out of me.

After speaking with his Endo team this morning we have again adjusted his numbers. I'd like to say this makes me feel better, but honestly this is something we will always be adjusting. For now I am thankful for technology to watch over Jases blood sugar 24/7 during the times we can't. By the sounds of what his nurse said today, we'll hopefully be getting a script for a pump soon. I think we're all a little frustrated by what happened last night, because today could have gone VERY different. 

All that said, as frustrating as this disease is, I am so thankful for today, for Jase breathing and playing and seemingly not phased by what happened last night anymore.

Stay Tuned...