A Day in the Life of an Infant Diabetic

My day started this morning at 2:30 a.m. (Actually, my mama's day, but it is all the same). I have to have my blood glucose checked in the middle of the night to make certain I am not too low. Lows can result in a coma if left untreated. Instead of low, I was too high, so mama gave me insulin (via the pump), writes down all the numbers including my glucose and amount of insulin, resets the alarm for 5:30 a.m. (to make certain the insulin did not act too quickly - it is still very much a guessing game at this point), and goes back to bed. Most of the time, I am too tired to be bothered by a poke in the finger (and since I have 10 or more per day, they don't really bother me much), so I sleep through it all.

Next thing I know, it is 4:30 a.m. and I don't feel so well. I whine a bit. Mama puts the paci in just to see if I will fall back to sleep, but instead, I keep complaining. When this happens, she again checks my blood sugar. It is low, so she gets me up to nurse me, gives me insulin, and puts me back to bed. After she writes all this down, she goes back to bed for a few minutes before my sisters and brother awake.

Then my day really starts around 7:30 or 8:00 when I wake up and am ready for breakfast. Before I can eat, my blood sugar again has to be checked. Mama then counts the carbs I will eat for breakfast, feeds me, gives me insulin (thank goodness for this amazing pump so she doesn't have to give me a shot each time), and then I can play.

After a few hours, I am feeling really terrible again. I can't really tell mama, so I instead fuss and am really, REALLY fidgety. I grab at everyone's glasses and hair and sometimes fall over backwards. Mama checks my blood glucose again, and sure enough, I am too high. (Highs cause blurred vision, headaches, extreme hunger and thirst, sweating, and a myriad of other unpleasantries). Again, insulin is administered.

Playtime, and then lunch. Yep, you guessed it. Blood sugar check again. Mama counts carbs, gives insulin, writes it all down, and feeds my bubby, sissies, and myself.

Playtime, naptime, schoolwork, etc. If all goes well, I feel pretty good for a few hours. If too little insulin was given, I have another high (see above). If too much, or if my body absorbed it too quickly due to my exercise regimen (currently consisting of crawling), I have a low (see above).

Snacktime and dinnertime again start with glucose checks, includes carb counting, insulin, and writing everything down. It is rather time consuming for mama and daddy, but they are doing a pretty good job. At least that is what the doctors keep telling them.

After daddy is home, it is time for my infusion site change. We only do this every third day, but it is not my favorite part. Below are some pictures about how that process works.

Me on bed getting ready for site change. This is a Continuous Glucose Monitor which she can tell you about another day, but it consists of another poke and something to monitor my blood glucose levels. Notice the cute, er, um, handsome camo belt which holds my pump. Another shot of the belt and my infusion site. The little white circle just above the belt is a sticky pad with a needle in the middle connected to a small tube connected to the pump. Inside the pump is a cartridge filled with insulin (enough for 3 days). I am holding the glucometer (the thing used to check my glucose levels).
Another pic of the site which needs changed.
The blue box just below the silver glucometer is the actual pump. Pretty snazzy looking, huh? Good thing they come in stylish colors. And cute toes, don'tcha think??
Daddy does lots with the preparation for the new infusion site including filling the cartridge with insulin, prepping the new tubing, uploading the pump info to a website so the docs can look at my stats from their office, etc.
Mommy does all the taking the old one off and putting the new one on. This is my least favorite part. It hurts some AND I have to be still. Here, she is putting on some adhesive remover which makes it easier to remove the adhesive (at least that is what they tell me...all I know is I don't get to touch and somebody has to hold my hands out of the way and it is very, VERY annoying.)This one's a little blurry, but it is where the old site was. They are usually rather red and a little poke where the needle was.
Here, she holds a cotton ball on the old site because a little blood often drips out. Ugh! Seriously, how much blood can a little guy like me lose and still have plenty in them. They poke my fingers and toes so much and keep squeezing it out. I am starting to think I am going to run out. This is the needle that will go in. Mama and Daddy just changed to a different infusion site. With this one, the needle does not actually stay in me. It just pokes in to get a little catheter in me which will stay. The needle will come back out. And here is the new site. This one is on my leg. We currently use my tummy and my thighs. I think the tummy hurts a little more when putting in, but then the tubing isn't all up in the way when I need a diaper change and stuff. It already doesn't bother me too much. I am used to this stuff all connected to me. I don't even pull at the site or the tubing. (Truth it, I think I already can tell a big difference how I feel when this stuff is connected to me versus when it wasn't. I can still feel pretty gross sometimes with the highs and lows, but I don't feel nearly as bad as I did going into the ICU. Actually, sometimes, I feel pretty doggone good!)