To be honest, this pump is probably the main reason we were able to leave the hospital last year. Without the use of it overnight, we were unable to keep Ezra's blood sugar at a safe level. While I sleep, it slowly drips dextrose into his tummy, maintaining his blood sugar in a way that prevents damage to his growing brain.
We joke about how he needs to be "charged" or that we "plug him in like a cell phone." And honestly, it doesn't seem to bother him at all. He rarely plays with it or tugs at it and for him it seem to be just an extension of his body.
And yet.... sometimes it really makes me sad. It is a constant reminder of the health problem he has and of those long months we spent in the hospital. Every night, as part of our bedtime routine, I am not just reading and rocking him; I'm preparing the pump. It generates a lot of waste in between the bag the fluid comes in and the bag that works with the pump. If he rolls over in the middle of the night, he can kink it and sometimes it comes unplugged and leaks all over his bed.
I worry about it catching on things. When we were in SC a few weeks ago I actually yanked the tube all the way out of his stomach because it got caught while I was putting him down in his crib. (Thankfully it went right back in.)
Before planning our camping trip, we actually had to call the National park and speak to a park ranger because we were worried it might attract bears. If we go somewhere, we have to pack and bring the liquid with us on the plane. If we stay late at a party, we have to bring the pump and liquid with us, and then keep him close to the backpack we pack it in.
If I'm honest, I worry about what people think about it when they see him wearing it. I worry about how he'll feel about it when he gets bigger and realizes not everyone else has one. There is no real way to know how long he'll need it. I had assumed maybe until late elementary or middle school, but then I recently read a study that kids in his situation often were able to go without it much sooner than that. We'll see.
So for now I try to be thankful we have the pump, and insurance that pays for the liquid, and for a dear woman named Tricia who works for the company that delivers our medicine and always makes sure we get what we need.