After 7 1/2 months of giving our daughter 4 shots a day (sometimes more if she wanted to eat more), she “went on the pump” July 22nd. This is terminology used for saying that she now wears, 24-7, a cell-phone sized device that administers insulin for both meals and a continuous base-line amount. This little device has a cartridge containing a 3-day amount of insulin (it can hold more, but with hot weather, the insulin can “go bad”, so we only put in 3 days worth). It is attached to a length of tubing which is “connected” to her mid-section via an “inset” or, as I’ve heard other parents call it, a “port”.
We were told, in advance, of the transition period required to set the levels on the pump to Maddie’s needs…a period of about 6-8 weeks. We were told, in advance, of the benefits and limitations of the pump. We were told it was the best way to manage her diabetes. We were told that it would indeed add more challenges due to technological issues, inset function, etc. I was aware on a cognitive level of these things. I was not aware on a personal, day-to-day experiential level.
To briefly state what the last LONG two months has taught me, it is that THE PUMP IS ONLY A COMPUTER. It only “knows” and can “do” what you have programmed it to do. And then, it can only do what it has been told, if you have given it the correct resources to pull from, ie. enough insulin in her cartridge, tubing without air bubbles in it, and an inset that is not crimped or otherwise compromised. The number of variables as to what can go WRONG with the pump is oftimes overwhelming for me.
I won’t go into all the particulars of what has to be checked every day (that may be A topic for another post), but I will say, that as we have been calibrating the pump (tweaking and adjusting the ratios); I have also had to calibrate my mind–to adjust and correct what I somehow had in my head that the pump would do for Maddie. I never expected it to be able to test her blood sugar levels…I knew all along she would still have to prick those sweet little fingers multiple times a day (in fact, MORE times now on the pump). I knew all along that it would not be able to adjust itself to meet her needs. But somehow, getting it square in my head that this VERY EXPENSIVE, tiny little thing is ONLY a computer, has helped me. It is NOT a pancreas. It doesn’t know how much carb she is getting ready to eat…we still have to count the carbs for a meal or snack and TELL the pump this info. It doesn’t know when she is getting ready to exercise (exercise causes her to use up carbs pretty quickly, so you have to back off on the amount of insulin you give her). It doesn’t know that she is anxious about taking a test, or excited about a party, or angry, or ANYTHING!! all of which can raise her sugar levels! There are so many variables a healthy pancreas monitors (our bodies are truly amazing!), but this little device is no pancreas!
Lest you think it is all doom & gloom, the pump DOES have many benefits that mere shot-giving cannot touch. Once all the ratios and levels are set (for the time being ONLY, since she is always growing and her insulin needs are always in flux), then it will do all the math for us. You type in the number of carbs she is getting ready to consume (and hope she will actually consume all of them!) and then type in what her current blood sugar level is, and it will calculate how much insulin she needs based on the time of day (it changes throughout the day), based on her insulin sensitivity level, and what insulin she may still have on board, if any. Very useful, very helpful information. She is also able to give herself insulin when we go out to eat, instead of us giving her a shot in public. She also doesn’t have to get the shots, although the burning of the insulin going in is felt every time, just like it was with her shots. We are even able to adjust the basal levels so that she has less of a chance of going low in the middle of the night. Yet we are still testing at midnight every night. We did, however, drop the 3 am testing several weeks ago, for which we are very thankful. Neither my husband nor I are ready to drop the midnight one…not sure we ever will.
So, in many ways, my husband and I try to THINK like a pancreas. But here we see our own limitations as well. As much as we can predict, adjust levels, bolus for fewer carbs, or whatever; we are not able to keep Maddie’s blood sugars within “normal” limits at all times. We thought, or perhaps I should say, I thought, I would better be able to do this with the aid of the pump. Every day, I’m reminded that just as the pump is not a pancreas, neither am I. I am human. I can only do the best I can with the information and technology I have at my disposal. And then, I have to leave it there and pray.