It’s been almost three months since my son started on the pump, and I feel we have never had less control than now. Some of my frustration is due to the lack of sleep, and some is due to the worsening control.
We started the pump 2 weeks before school. We wanted to start much earlier, but our endo clinic made some problems prescribing enough Novolog before we had gone through all the pump clinics. As a result, instead of starting at the beginning of summer, where we would have had a chance to establish a good baseline, we started right before the school year, which also means right before the fall sports seasons, and right before all the extracurricular activities.
If we had a single problem to deal with that I can clearly identify, it would be much easier than it is. Instead, we are facing a constantly varying basal as the sports schedules change every day, along with, several times per week, glucose reactions that don’t quite make sense, such as, for instance, varying activation time for insulin.
The first problem we face is basal needs that vary from -30% to +30% (or much worse when sick, of course). We are often off by 10% or more, and take a while figuring it out. When my son is on his own, he has a harder time figuring out basal vs bolus issues, and, as a result, spends more time low or high. The reason for the high variance is that, every day, activity schedules and sports schedules change. One day we will have regular PE in the morning, a dance routine for the school musical at 4:00, and a two-hour swimming practice before dinner. The next day there may be nothing. The day after there may be a different set of activities, at different times in the day. Refueling in a timely manner is not always possible during the day, so post-exercise lows also play a role.
The second problem we have is that my son has post-exercise lows from some ports practices, such as swimming, but post-exercise highs from others, such as biking.
The third problem we have is the fact that both ICR and CF change with big changes in basal needs. Since we are often a few hours behind tracking the right basal, we can be off on meal bolus and corrections.
The fourth problem we have is that my son now appears to need, about half the mornings, feet-on-the-ground insulin: an immediate and significant bolus when getting up— but not every day We have not figured out if there is a correlation with something else.
The fifth problem we have is the fact that, occasionally, his insulin activation time, which was very reliable so far, can run 20-40 minutes late. Again we have not figured out when and why.
And, of course, we still have plenty of random hormonal peaks day and night, probably two per day average.
The first consequence is that our control is much worse than it has been in the past. We have always felt that we understood what happened and why, even when we got caught and made mistakes. But there are some times now when I don’t know what is going on. Because of the quick varying basal, the changes in ICR and CF, and the random insulin activation time problems, sometimes I don’t even know if the problem we face is a basal or a bolus issue.
The second consequence is that my wife and I don’t sleep enough. With the random sports schedules, it is rarely possible for him to have his last meal of the day early. He typically injects his meal bolus around 6:30 or 7:00 because that is the earliest time he can do it. His DIA is about 5.5 hours, but he often gets a hormone peak in the evening, so that means another large bolus around 9:00pm, meaning a DIA ending around 2:30, before which we typically can’t lock reliably on a basal for the night. Often, it takes until 4-4:30am before we have a stable basal for the night. That does not leave a lot of time to sleep.
Clearly, we have too many moving parts. I feel that we were too confident about being able to deal with it all. We should have been a lot more careful about adding moving parts one by one. I am now thinking about how we need to approach this differently.