Before I go any further, I have to give God the credit for giving our family the courage and strength to endure the last few months. We've had some trying times with these new devices. God always shows up and provides us with what we need. He has us right there in the palm of His hand.
Most of you have been curious about all his new "gadgets," so I thought I would share about them. You could say he is like the bionic man...or a robot...because he now has two different devices that help us treat him for this disease (and help keep him alive).
This is his insulin pump. It delivers insulin in two different ways. He gets insulin every hour to help maintain a healthy blood glucose level. He also gets insulin every time he eats a meal (when we enter the carbs into the pump) or times when his blood glucose is too high. Both of these insulin doses are given through the pump, either automatically each hour, or at the touch of a button. That all sounds great...until it's time to change it...which is every three days...
This is his infusion set. We open a new one of these each time we change his set. The picture in the back is what it looks like closed. The picture in the front shows the needle that is inserted (with a small tube called a cannula, that delivers the insulin). The needle comes back out with the set and leaves the cannula in. The white patch looking thing is the cannula that is inside his body. The tubing on the right delivers the insulin from his pump, through the tubing, to his body. He can't feel any of this happening...except when he gets a new set. I have to be honest, it is rough. The set makes a clicking sound when it goes in...which I think is the scariest part. Again, he goes through this every three days!
This is his CGM (continuous glucose monitor). This is our newest addition, not even a week old. The sensor (the white thing you see on the bottom) "talks" wirelessly to his pump. It relays his "predicted" glucose levels to the pump every 5 minutes.
These are parts of the CGM. On the top left is the needle that inserts the little thing below it. This is all done with the insertion device (the blue thing on the right). The needle does come right back out, but the piece of metal stays in and the sensor is hooked to it. The piece of metal is similar to the testing strip that we use with the meter. However, this device checks the fluid in the tissue, not the blood, so it is not quite as accurate as the meter. So we still need to do finger sticks at least 4 times a day to calibrate this device. I must say, for the most part so far, it is fairly accurate with the meter. And again, this needs changed every three days.
This "monitor" is probably one of the best things about the CGM. From my bedside, I can see what his glucose level is, how much insulin is left in his pump, and various other things. It alarms me if his levels are too high...or too low. When we aren't at home or he is too far from the monitor, the pump also alarms, letting us know the same information.
It's all wonderful technology, but it all comes down to INSULIN IS NOT A CURE!
As I hear quite often, "Can he have that?" Well, yes, of course! He can have anything, as long as he has the insulin to cover the carbohydrates that he eats. But, we are trying to teach him how to make good choices in his life. Does he have ice cream, cake, and candy everyday? No! But he does have those things occasionally.
Life, at this point, kind of seems like a game. You never know what's going to happen with his levels. Sometimes you are fighting the highs with insulin and sometimes you are feeding the lows with sugar, carbohydrates and proteins. Payton will be riding this roller coaster for the rest of his life...unless a cure is found...
We are so excited to be participating in the JDRF walk on September 22. We have almost 100 friends and family members that will be walking with us to support and raise money for the Juvenile Diabetes Research Foundation.
If you haven't watched his YouTube video, check it out: http://www.youtube.com/watch?v=SGz4hN_N5ho
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