Day 4 of “podding” and muddling through it

We are in the throes of transitioning to the pump. We started officially on Thursday, with fairly good results overall but not without issues. Here’s what’s been happening so far.

The Good

It is so, so easy compared to injections. Check BG, enter the number of carbs, the pump calculates how much insulin V needs, press “confirm” and off you go. Fast, painless, less room for human error/miscalculation. Putting the pod on is pretty straightforward and almost painless. There is a little pinch when the cannula is inserted but it only lasts a second of so. After that V may as well forget she is wearing a device on her. The PDM is easy to use and we are all getting the hang of it. No issues using it as school as well.

The Bad

We had to discard the very first pod we tried to prep at the Endo’s office because it did not beep as it’s supposed to, to indicate that insulin loaded successfully and the pod was priming. (We called Insulet and they will be shipping us a replacement pod.)

We are so, so tired. We have to get up in the middle of the night a few times to check V’s BG. The first night we had some issues with her dropping; had to give her juice 3 times. Turns out the basal rate was entered incorrectly into the pump and she was getting a little too much insulin. The second night was better. But the third night V started to run a little high. Our dutiful Dexcom kept waking us up to tell us she was over 250. (250 is a magic number that requires us to give her a correction if she surpasses it.) But nope, she was not. Close to 250 but not quite. Eventually I turned the High alarm off for the night, but not until it was past 4 AM.

We changed the pod today, as scheduled, and are still struggling with getting BG into a good range. Does she need more basal insulin? Is it another fluke day when things just get crazy without explanation? The good news is that it is a lot easier to do corrections with the pump, and that’s what we’ve been doing. But the fact is, as expected, there will be a lot of tweaking and trial/error going on in the next few weeks until we get everything ironed out. And it is exhausting.

The Ugly

What the heck is up with the DiabetesPartner software? We are having the HARDEST time getting it to work for us. We need it to work, as we are supposed to upload the data from the PDM so that the Endo nurses can review it and tell us what changes to make. But for some reason it’s been one issue or another. John is working on it now, trying to get it to work. It is utterly frustrating. And there is no phone number we could find so far to call tech support. And the worst part is that, after the first month, they charge $4/month for it.

We know it will all be resolved soon, and it’s worth it. At least so far the good far outweighs the issues and inconveniences. We shall see…

And so it begins

Today V started a saline trial of the Omnipod. The nurse came to our home and trained us on using the pump, we went through a few potential scenarios we will likely run into, and then the first pod with a saline solution (instead of actual insulin) went on. For the next few days we get to practice with it so that when we go “live” on Thursday we have a better idea of what we are doing. It’s not really that complicated and we are thrilled. But… This means another transition.

Take the following, for example. After activating the pod, it was lunchtime for V. I calculated the carbs and she inputed the info into the pump and administered her bolus. And we almost forgot to give her real insulin before she started eating. This could have been a big fat oops.

Everything is new again, and it is not. The pump will work as a glucometer. But we are not really using it yet that way. For the next couple of days we will continue to use our old one and manually input BG numbers into the pump. Or maybe we will do both? V will have to take the pump everywhere with her. We are little paranoid about her losing it, as it is not attached to her body with a tube like all other pumps. We will have to get used to putting it into her backpack every school morning, then transferring it into her diabetes kit after school if going somewhere. And we will have to have a back up plan of what to do if the pump or a pod malfunctions, which will definitely happen at some point. Then of course there are many really cool functions on the pump itself that we are dying to start using, and it is fairly straightforward, but there is a learning curve of course. Breathe…breathe…

Today I realized how far we have come since V’s diagnosis 8 months ago. We’ve gotten into our routine, found a comfort zone, found our groove. And now we have to bust through our comfort zone and into an uncharted territory. Again. We are ready and it will be good. Great, possibly. But change and transition sucks.

It’s been that kind of day…

V’s BG has been crazy today. Started in low 200s in the morning. Then she was running around and playing, and did not want to eat anything, so naturally she crashed to about 60 before lunch. By the time dinnertime was rolling around she was back up at nearly 300. About an hour after dinner she hit 400 or over. Finally around 9 PM she started dropping and is now at 158. Yesterday we had similar swings. It’s nuts. Her mood has been all over the place too, not surprisingly. And there’s no explanation. We are dosing correctly and counting carbs accurately. She may need a tweaking of her dosages. Or it may just pass. For now we are just keeping track and if we see a pattern for 3 days we will call the Endo to make adjustments. You can never get too comfortable or complacent with T1D. Stability is transient at best.

CGM: how did we get along without it?

It’s been a while since my last post. We’ve been busy. V started wearing Dexcom Continuous Blood Glucose Monitor (CGM) a few weeks ago. We had a bumpy start. Something stopped working almost a week after we put on the first sensor. We replaced a couple of sensors but it was not fixing the problem. After talking to tech support, we replaced the receiver. That did not fix the problem either. We then got the transmitter replaced and now everything seems to be back on track. And let me tell you, it is awesome.

V was a little nervous at first about putting the first sensor on. We all were. But it turned out to be a fairly easy process. And after an initial pinch, we were all relieved that it did not hurt. In fact, after a little while V completely forgot it was even there. It did not seem to bother her during any activities, including bathing, sleeping and sports. And it gave us data. Lots and lots and lots of data. Now we are seeing all the in-betweens. We are learning that V’s BG really shoots up after she eats and it takes a good 3 hrs to bring it back to the normal range. We are also learning that she stays stable at night. That is a tremendous relief! Of course everything can change in the future but for now we are thrilled that there really is no reason for us to check her in the middle of a night on regular basis. We are also learning how exercise affects her BG levels hours after it’s over. And it’s allowing us to fine-tune her carb snacks during and after so that we can avoid huge swings and drops. We are not quite there yet, it’s a work in progress, but it’s so cool to have this information to guide us.

We are also excited about how accurate the CGM is most of the time. Once in a while there will be a fluke. Like when a couple of mornings ago Dexcom gave us a low alarm whereas blood check showed a perfectly good number around 100. But those moments are rare and often CGM is within 10 points of the blood check. CGM does not replace finger pricking. We sill do it at meals and whenever we make a decision about either treating a low or correcting a high. But it’s definitely reduced the need to poke a finger at night, or during exercise or other activities, because then we can rely on CGM to give us a good ballpark number of where V is at.

We have not yet had a 100% match to the blood check. But I’m sure one day it will happen. For today, I will take this (113 vs. 114) as pretty darn awesome: