At the other end of the pump and tubing, is the highly important “inset”, short for “Infusion Set”. We chose a particular kind of inset for Maddie based on several factors: her being a child and needing a slanted insertion rather than 90 degree insertion, and a manual insertion rather than an “automatic” type. As I mentioned in my previous post, there are several problems you have to watch out for with the inset: possible crimping, air bubbles, or site complications. The inset has to be changed every three days in order to prevent infection. Our bodies are so good at noticing the presence of foreign objects, that they begin to attack them, thus creating an infection. We change the site of the inset in order to keep this from happening.
Site care is very important. Our “pump book” recommends actually creating a chart of your child’s front and back mid-sections to mark about 16 different places to alternate placing the inset. The body needs time to heal from the inset “hole” as well as the insulin delivery to that area. During our shot-giving months, we unknowingly caused something called “lipohypertrophy” around our daughter’s belly button. This is where the fatty tissue there begins to swell from repeated use. The insulin apparently causes this condition when it is inserted in the same place over and over again. We do NOT want this to happen to Maddie’s belly, sides, and back!!
The inset has a “cannula” which is inserted via a fairly large needle. Maddie doesn’t like looking at it. I don’t blame her. We are learning to insert the cannula and then remove the needle quicker each time. She also “wears” a glob of lidocaine to numb the area as much as possible before we give her a new inset. It’s about a 1 1/2 to 2 hour process from the time the lidocaine goes on to the actual inset application. We can’t wait too late in the day to change the inset…we need time afterwards to be able to assess whether the new inset is functioning properly, ie. whether the insulin is actually delivering. You do NOT want to have to change the inset again in the middle of the night.
Just imagine how a typical 8 year old might react to all this. I keep thinking we would have hysterics, crying, hiding, running away, in general doing what I myself might do. But incredibly, we do NOT have a typical 8 year old. We found this out as she bravely took her shots. We did not tell her to buck up and be brave. She’s a very creative gal: she tries different things and then sticks with whatever routine helps her. She has found that watching SpongeBob Squarepants helps keep her mind off of the inset going in. She likes having a little soda next to her to drink in case she feels a bit woozy. She likes to have as much “say” in the process as she can, and then leaves the yucky part to us. We know that she has a bit of dread on inset days…she wakes up and sometimes the first words out of her mouth are, “Oh pooey, today’s an inset day.” Other than that we don’t see too much resistance. She is AMAZINGLY brave, courageous, and boldly faces each inset change with fierce determination.
An artist friend, Dan of Dan’s Canvas, said in a comment on the previous post, that his son, who has autism, has taught him so much. His son has taught him to be “more empathetic, more patient, more accepting.” This has already been true of our daughter. We have learned so much from her. Her acceptance of it all is sobering to me. She does not merely accept it, but seems to embrace it and truly find joy in it. I know what Dan is saying is true and that my husband and I, and our other two children, will continue to learn so much from Maddie!