There are so many things going on in my brain this morning. So much to think about.
The last few days have been very rough as far as diabetes is concerned. Riley had a set change on Sunday, Monday, Tuesday, and early this morning. Sunday, his needle came out while he was using the restroom. It was due to be changed Sunday, so not a big deal. I wanted to change it after he went swimming, but it was OK.
Monday he started out at 121, which was nice. By lunch he was 304. Not good, but these things happen occasionally. He got a correction and a bolus for lunch, but his sugars were still in the 300s (385, 342). I looked at his needle, but didn't really see anything wrong. Later, when I went into the bathroom with him to test his ketones (which were small), I noticed blood in the tube. Michael was working, so we went to my mom's house so she could change the needle. Then, I must have over corrected because he was down to 54 a little while later. Then, 128 and 183. He ate an unusually large amount of food, most of it being carbs. He got the largest bolus he's ever gotten, 2.0. He then spiked up to 315 then 364. A correction brought him down to 272. But, then he went back up to 290, 289, 291. He just wouldn't come down even though we were correcting him. And, this was in the middle of the night when we usually wouldn't correct so much. Eventually, Michael just went ahead and changed the set. He didn't come back down until lunch time and then was 125, 197, 171, 133. OK, now everything was back to normal.
That was until 9:30 that night when he spiked up to 331, he got a correction and 2 hours later was 352. By this point I've had about all I can take and Michael is about to pull his hair out. What in the world is going on? I've increased his nighttime basals already, but it hasn't seemed to make any difference. An hour later, he's 364. How, how, how? I just don't understand. His set looks perfectly fine. But. he's not coming down, again, even with corrections. So, Michael did another set change and another correction. In an hour and a half, he's 190. He woke up at 146 this morning.
I just don't know what's going on. With the exception of the set with blood the other sets have looked perfectly fine when they came out. The insulin is brand new. But, it couldn't be the insulin because his sugars have been fine during the day. It's just the nighttime that his sugars spike up, not just a little, but a lot. I'm going to wait a day or 2 and increase the nighttime basals again. Has it really been the sets or is the honeymoon over? There are so many reasons why his sugar may go up. How do you know which one is the culprit? And, how long must Riley endure these high sugars until I figure it out? I swear if he spikes up again tonight, my head just may explode. I'm just so emotionally drained right now.
It seems that whenever I get the least bit comfortable, just when I think everything is going to be OK, diabetes has a way of slapping me in the face and waking me back up to reality.
As much as I want Riley to have a normal life and as much as I want to fool myself that everything is fine, it's not. It is not fine. It is not normal. It is stressful and draining and a burden that he must bare on his own one day. I try not to think about that often, the future. I just try to live in the present.
But, today, all I can think is one day Riley will be up at 2 AM changing his set in a sleepy fog wondering what in the world he could have done differently. Worrying about what affects these sugars are having on his kidneys and his eyes. And, knowing there's really not a darn thing he can do, but take what life has dealt him and go on.
I am crying so hard now I can barely see the keyboard. I haven't cried about diabetes in a while. It's just so hard. It's just so damn unfair. I know things could be so much worse. But, sometimes I just can't help but think why did this happen to my baby. Why? Why? Why? But, no matter how many times I scream it, there is never an answer.
When I started this post I had some hope. I was actually a little excited. I had just received a response to an email I sent last week. I now have a location for my Lee Iacocca walk. Now, I can start planning. Now, I can ask others to join the team.
Now...I can hope again. I can look to the future and see, not complications, but a cure. A cure for my baby and all the others who live with this disease every day.