Sensor Update

After a week of wearing the blood glucose sensor, Grace was thrilled to have it out. When she first had it put in, it was annoying and irritating but by the end of the week, she didn't really complain about it and became pretty used to it. Honestly, I think the thing that bothered her the most was the adhesive on the bandage they used. She has sensitive skin and it was completely raw, red, and irritated when they took it off. This time we had 3 nurse educators, 1 Medtronic rep, and a partner in the practice take a look at the data.

After they removed the sensor, they asked us to wait in the waiting room. SpongeBob was on the TV so the kids were quiet but I kept looking at the clock and the time that was passing. It seemed like it was taking a long time to read the data. Her numbers were really all over the place so I knew that much but with the wait, came the anxiety.

When they finally called us back, they had printed out all of these fancy charts and graphs. I don't do fancy charts and graphs. I see graphics like that and my head swims. But the first words out of the nurse educator's head made me focus, "We have a problem." That will get anyone's attention. I started repeating to myself in my head, "Don't panic. Don't panic. Don't panic. Focus." But all of those serious faces looking at you isn't exactly relaxing.

In short, this is what the sensor revealed: Grace's overnight blood sugar looks like a roller coaster. Beginning at 9pm her numbers start to climb. They peak at 12am and then begin a steady decline until about 6am. The problem with the decline, and this is where my nausea set in, is that her blood sugar was dropping to 40 around 4:30am. At least that's what we think. The sensor doesn't measure below 40. It's entirely possible she has been even lower. I stared at the graph as everyone was talking. I saw the plunge and how it stopped at 40. I couldn't stop staring at it.  It does not wake her up and, as our doctor had accurately thought, she has been having so many lows, she doesn't really feel them as much as she should. He was smart to order the sensor. I owe him a hug on Monday when we see him for our check up.

I know I must have looked terrible because they all started talking at once. Overnight lows are a parent's worst nightmare. It's why we check our kids overnight. I was checking but not at 4am. I didn't catch it. They explained lows like that are bad if they are sustained over extended periods of time. A low of 40 for an hour will not harm Grace in the short run. They couldn't spit out the comforting words fast enough. But then the doctor chimed in, "But this is still very concerning."And he had my attention again.  He thinks Grace's pancreas is putting out a little bit of insulin overnight driving her numbers down. We had assumed her pancreas was no longer able to make insulin but he explained the pattern of a steady drop and then a rise around 6:30am means her pancreas still has some insulin to put out.

While my head was spinning it occurred to me I was looking at perhaps the four smartest people in the country working to help my daughter. They debated the cause of the problem and did not heistate to mix it up with one another. The nurses took the doctor to task who in turn took them to the mat. They were all fired up trying to come up with a solution. I was so overwhelmed by not only the complexity of the problem but also the dedication of the team, their passion, and their knowledge.

So here is the solution(s) they offered. 1)They gutted Grace's pump settings and we are starting over. This means around the clock checks for a while. Her overnight numbers were high last night but not low so that is good but still in need of tweaking. 2)They recommended thinking about wearing a sensor more regularly. They can be purchased through insurance. Grace does not like the idea. 3)Grace has been having stomach aches and headaches intermittently for 6 months. She is going to get blood drawn for a Celiac's screen to see if this is causing those symptoms. It can also affect your blood sugar.

When we left, we shared the elevator with a little boy in a wheelchair. His mom said to me, "What a long day here." Her son responded, "We've been here all day and it's so boring." Grace said, "I know. I was bored, too." I should have asked that mom for her number so we could go out for a drink. The look on her face, the look on my face, the looks on the faces of our children said it all. Everyone was spent. Sometimes I leave CHOP energized and ready to take on another round of diabetes. Yesterday was not one of those days.