A Difficult Day At Vanderbilt

Today was a harder day than normal at Vanderbilt. We started out really early in the morning so that we could stop & put EMLA cream on Kaitlyn & still get to Vanderbilt Children's Hospital by 9 a.m. I had asked to see Kaitlyn's numbers from her last test. I wanted to research numbers on specific antibodies. What I didn't expect to see was that Kaitlyn has already had two times where she had "impaired glucose tolerance" on her OGTT!!! How did I not know this??? Challenge #1: Don't freak out in front of the kids. They sweetly suggested that it might be a little insulin resistance due to puberty. Did she see my little girl a year ago when she took the test? It felt like confirmation that the inevitable is closer at hand than I want to believe. Her fasting glucose was 80 (perfect, but just like all the other times), but I couldn't help but wonder what the other numbers were. Will they be high enough that she will be diagnosed when the labs come back on Thursday??? Still, the staff there is amazing, & they constantly tell Kaitlyn how wonderful & brave she is, and how she is one of their very best patients. She really is fantastic about everything. At the end of the test, she gets to order lunch, but she always get the french toast sticks, bacon, eggs, & orange juice. The OJ slipped & fell all over her pants, but she remained sweet & easy going. I only mention it because it may have contributed to panic #2.

After Kaitlyn was released, we stopped by the food court to get lunch for the boys. I suggested that Kaitlyn take her BG so we could see what it was. It read...HI. Kaitlyn smiled and said, "Hi!" back, but Andrew & I both looked at each other knowingly. HI means high glucose, over 600!!! My heart sank. Challenge #2: Cry later. Stay calm for the kids now. She must have had orange juice on her hands or something, because when we rechecked in the clinic 40 minutes later, she was 97. It was a long 40 minutes. I'm still anxious about Thursday. Her highest number up to this point was 187. Over 200 on two occasions is an official diagnosis.

So now, it's Andrew's turn. His A1c ... 8.1! How???? How did it go up??? We have worked so hard! I've been checking the average in his meter & it isn't that high! I wake up every night at 2 to correct highs so it won't go too long & drive up his A1c. I don't know else to do. Our doctor really is good. I like him & trust him, but I need to vent. He wants the A1c at 6.5. Yeah, me too. His solution - change the pump site every 2 days instead of every 3 days & run Andrew on a reduced basal after exercise. Some people do have to change sites more often because numbers trend up the third day. Andrew doesn't. That will just cost us hundreds of dollars in extra supples. We already do the reduced basal after sports & split basals into school days with recess & P.E. & weekends. Have you ever seen Andrew? How do you quantify when he's more active than that? The doctor specifically mentioned swimming & we haven't been doing that. Oh yeah, that's because we take the pump off & he gets 0 basal while swimming! Still, I'll reduce it afterwards. Sarcasm & frustration aside, Andrew is very sensitive to activity, and it may be a good part of his variability. Fixing that won't be easy. All I can do is try again. The doctor is also running lots of tests on Andrew - thyroid, celiac, cholesterol, triglycerides, etc. His blood pressure is always on the higher side of normal, I think - 133/65 today. They will also routinely check for protein in his urine to see if there are kidney problems. How can my 9 year old have these problems? Oh yeah, he has an A1c of 8.1!

Thanks for being my place to vent! I can't do it in front of the kids, but this somehow helps. Thanks!

Here's a picture of the precious wounded: Kaitlyn had her IV for her OGTT, Will has a band-aid from his Trialnet rescreening, and Andrew has tape from his bloodwork plus a bandaid from the pneumococcal vaccine. Let's hope it doesn't raise his numbers like the last vaccine!