I know I've neglected this blog lately. Things have been so busy, it doesn't feel like I have time to breathe, let alone blog. Things have been busy in a good way though.
We went off for the weekend again for more basketball. It was the state AAU tournaments. It was double elimination. They won their first game and then lost the next two games. So, they didn't place high enough to go to the nationals, which will be in Florida.
Friday we stopped on the way to the games for an endo. appointment. Riley had been pumping exactly 8 weeks. He had gained a pound which I was very happy with. She also checked his A1C, which had gone up, of course. It's to be expected when you first start the pump because you usually have some high numbers in the beginning while trying to find your right basals. 8 weeks ago his A1C was 7.6, it is now 8.1. Although I hate that it went up, I'm trying to keep it in perspective. 8.1 is still a good A1C for his age. I've seen the range for his age as 75.-8.5, but I'd really like to keep it under 8. We will be going back the end of June and I'm hoping it will be better then. We're not having the highs like we were one time. Now they happen only occasionally, not every day like in the beginning of pumping.
Dr. M came in and the first thing she did was ask Riley how he liked the pump. She asked him if he was eating everything he wanted to and if he had any questions for her. She looked at his sites we've been using for his sets and said they looked great. Then, she went on the ask us some questions. Some of the questions she asked where: "Have you stopped doing things that you would be doing if Riley didn't have diabetes?" (No) "Are you letting him eat like he wants to?" (Yes). The one question that stuck in my mind and I have thought of quite a bit since the appointment was "Is diabetes still in the top 3 of you lists of problems?" I had to be honest and say yes. She assured me that one day she would ask that question and I would say no. I have to admit I have a hard time believing her. She then went on to add that given that Riley was so young, it may take a little longer before it wasn't so high on the list, but one day it wouldn't be. Still, I'm not convinced.
She then looked at his sugars. She looked at how I'd been adjusting basals and said, "You have a good eye for this. It looks like all you need is for me to bless you and send you on your way." That made me feel good. I felt like I had a good idea of what to do, but then I was thinking maybe there was something I could do differently. The main two problems we've been having are his 2 hour post parandal (after eating) breakfast sugar. It's been too high. One might think a carb coverage adjustment is in order, but his breakfast coverage is already 1 per 30g. This is the highest of all his carb coverage. Upping it to 1 per 25g just seemed like too much to me. His morning basal is also the highest of all day at .150. The second problem ties in with and probably causes the first one. Riley's 2 and 3 AM sugars are usually a little too high, usually in the lower 200s. But, by 5-6 AM, his sugars are low enough that we have to suspend his pump sometimes. His basals from 12 AM to 3 AM are .10. They drop all the way down to 0.05 from 3 AM-8AM but still he drops too low. Dr. M's thinking was just like mine. She said that 1 per 25g is too much carb coverage and the problem with his morning sugars going up probably stem from his basal being so low earlier in the morning. She said what we need to do is get his 5-8 AM sugars up so we can increase the basals going into breakfast. But, how do you do that? I told her the thing that bothers me most right now is having to basically run his sugar up at bedtime so his sugar won't go too low later in the morning. If I don't run his sugars up to the 200s, he will defiantly go too low later and need his pump suspended, which again, affects his post-breakfast sugar. Her thinking is that he is just so active. He really is never still. She thinks his activity affects his sugars in the early morning hours. Her recommendation was to try increasing the amount of fat he gets at his bedtime snack. She's hoping that will help keep those sugars up a little longer thus allowing us to increase his basals a little. Now, Riley's nighttime snack is cheese puffs. It makes me cringe to even write it. But, he loves it and it has 8g of fat per serving but no trans fats. At first, I thought it may be working. His sugars were 134 and 121 pre-breakfast. But, this morning, he was 90. That's a great sugar, but too low to increase the basals. His after breakfast sugars have been running in the 250s range. His 8-12 basals have also been increased to .175, but I haven't seen where it's made much of a difference.
The rest of his sugars are doing pretty good. We hadn't had any major lows lately. That was until Sunday morning.
We were near a place with a huge mall. We decided to spend some time there before heading home. Riley's pre-breakfast sugar was 134. We then went to the mall. We had only been there about an hour. He hadn't been walking much. We were carrying him most of the time. I decided to stop in the middle of the mall and check his sugar. He acted OK. He said he felt OK. I just wanted to check to be sure he was OK. He was 54. Not OK. He got to eat Spongebob fruit snacks, much to his delight, and they did the trick. They brought his sugar up nicely and he didn't rebound like he usually does. We then carried him down to the food court and he had an early lunch.
It's things like that which make me hate this disease. What if I hadn't decided to stop and check his sugar? How low would he have gone? It scares me and infuriates me all at the same time.
I've been doing pretty well lately. I haven't cried in a while. But, I've gotten good at pushing bad thoughts to the back of my mind. Every once in a while, I'll think about when Riley is going to have to be responsible for the stupid disease. I mean, right now, I do all the work. I like it that way. He doesn't have to worry about it or think about it. It won't always be that way. One day all of my worries will be his worries and that saddens me. But, as soon as I have those thoughts, I push them to the back of my mind. There is no use worrying about it now. But, I think that's starting to catch up with me. (I'm crying right now while I'm writing this.) It's not like I've been in denial. I've just been in survival mode, I think. Just pushing through. Just doing what has to be done. But, eventually, the breakdown comes. It always does.