We heard how great pumping would be. There would be so much flexibility. He would get his childhood back. It would be much easier. We would be able to tailor his basal for every hour. Dosing could be as little as .05 units – so very specific. Life would be grand!
Caleb was diagnosed in January 2007. With everything everyone was saying, I couldn’t get him pumping fast enough. I learned what we needed to do and did it. We were carb counting from the day he was diagnosed – check. I became proficient in adjusting his doses on injections – check. We obtained insurance coverage – check. I read Pumping Insulin from cover to cover – check. I read the manual, got the training – check.
Caleb’s injection therapy had him eating 3 meals and 3 snacks a day of precisely the same amount of carbs at exactly the same time every day. It was not easy. Giving him 3/4 of a bagel for breakfast – that was depressing. A low carb dinner allowed for a higher carb dessert, otherwise sugar free jello. And oh how I disliked those pre-bed snacks. I was just not a fan of eating right before going to bed. I didn’t like finding carbs to eat – it messed up our routine.
I was ready for the miracle that everyone was describing. We were now entering the land of eat what you want when you want. No more schedules, no more smoke and mirrors to make 50 carbs at each and every meal seem like exactly what he wanted. Life was going to almost be like it was. That’s what everyone was telling us.
Well, not exactly.
The rude awakening came the very first night of pumping, April 24, 2007. Caleb’s BGs were good all day. I was nervous because he hadn’t had his NPH that morning, but he was cruising.
Me and three kids in the house – hubby away on business. I slept little, if at all. We put Caleb’s first Pod on his tush. I reminded him all day to be careful when he went to the bathroom – pull his pants over the Pod carefully. Then that night, I myself forgot. He woke up having to go and I helped him and ripped that Pod right off pulling his pants up or down – I don’t remember. I just remember I had to do my first Pod change in the middle of the night. That was not fun.
Worse than that however, were the 300s all night that would not correct. 300s??? Other than the trip to Universal Studios and the first couple of weeks post-diagnosis, we had not seen a 300. Egad! Correct, correct, correct. All night. He came down finally by morning, but I was a wreck. What happened to the miracle of pumping? The precise tailored dosing?
We did see immediately that there indeed was flexibility in what he ate. There was no longer the 50 carb limit. We cheered and skipped through the “beep-beep” of bolusing him for whatever amount of carbs he was eating. We also saw right away that he did not have to eat his meals squarely on the hour. If he was playing outside, we didn’t have to rush in for dinner. And, yahoo! – the snacks were no longer necessary. Would you like a snack? Sure, no problem – “beep beep”. But it wasn’t required. No more panic at school for him to eat at precisely 10AM even if he was in Music. Woo hoo! No more waiting for highs to come down with the NPH. If he had a high (with the exception of our late night fun) we did another “beep beep” and he corrected nicely.
But I thought this little pumping machine that could deliver insulin in .05 increments – so much more specific than the .25 units we were eyeballing with syringes – would result in near perfect BGs all the time. Wasn’t that what everyone was saying?!?!?!?!
No. It’s what I heard, but it’s not what they were saying.
They said there would be flexibility – check.
They said he would get his childhood back – well, for the most part, check.
They said it would be much easier – check.
They said we could refine his dosing – check.
Everything we were told was true. However, with no experience and thus no perspective, those statements are subject to interpretation. I of course now have that perspective and find myself saying all the same things, however, I know there is more to it. I know that pumping takes commitment. I know that you can achieve tighter control, but with tighter control comes more risks of lows, so diligence is required. I know that pumping is indeed a wonderful improvement to Caleb’s life, but it is not perfect.
I find this dichotomy hard to handle sometimes. I want to celebrate the advances we have today that make things so much easier, but it gives outsiders the impression that this is no big deal. There was a report on NBC Nightly News with Brian Williams last night which gave me the same feeling. It spoke about how much easier and manageable diabetes is today. It is. But it’s still very difficult and draining and stressful and restrictive at times. Yes, it’s better and advancements have been wonderful. But don’t forget about us world. We still need improvements because it is far from perfect.