A Space Walk for Jacob

This was sent along by Emily, official younger daughter of NewMexiKen. It’s from a colleague of hers.

Two years ago Jacob was a typical 3-year-old. But in mid-August 2004, everything changed. I noticed that he was drinking a lot of water. He would beg to go outside to play with the hose. Rather than splashing around like most 3-year-olds, he would just suck down all the water he could. He started having multiple “accidents” every night where he could easily flood the bed three times in one night. Despite a HUGE appetite, Jacob started to lose weight. The final weekend before diagnosis he stopped eating, lost all energy, and threw up twice. He was in ketoacidosis—a life threatening complication of very high blood sugar. His blood sugar was not able to get to his body cells as needed so instead his body had to use many, many of his fat cells. When fat cells get destroyed rapidly they can leave an acidic buildup of ketones.

I took Jacob to the doctor, and she immediately sent him to the emergency room. When they tested his blood sugar, his level was so high that it was beyond what the meter could read. He was in PICU for two full days. At one point he was at risk of brain damage, but that was avoided.

By the third day in the hospital, Jacob was in a regular room and it was time for the education to begin. He had to take a shot at every meal plus one extra at dinner. I was taught how to count the carbohydrates in his food, how to give him his four shots a days, how to poke his little fingers 4–10 or more times a day, how to balance the food he eats with his insulin and activity, and how to give a big shot of Glucagon to save his life in case of severe low blood sugar. He handled things very well, but it was very hard to see that he was having nightmares about the shots. He knew the shots would be four times a day, every day. He learned that there is no cure. This is a lot for a little guy to have to deal with. On the fifth day we went home, and I was to somehow keep everything balanced for him—something that used to be the job of his pancreas.

Jacob is now on an insulin pump. Every 2–3 days, I insert a little tube into his hip, stomach, or leg for the insulin to be transferred from his pump to his body. Sometimes I miss the numbing cream and the infusion site hurts for a while. He must wear this pump every day and night. He now has the flexibility to eat almost like any other five-year-old, but sometimes things still go wrong and we must deal with high or low blood sugar. Jacob cannot just run into a sprinkler or go into a pool without me first taking off his pump. I must then test frequently to adjust for the pump not giving insulin while he is in the water.

Now that he is in kindergarten, there is the added challenge of keeping him healthy while finding ways to not let his diabetes get in the way of his school experience. On a good day, he must go to the nurse three times a day. On days that his blood sugars refuse to stay in range despite my best efforts, he finds himself in the nurse’s office more often and for longer periods of time. He should be listening to stories, participating in circle time, and enjoying recess. He should not have to spend time every day going to and from the nurse. But, until there is a cure, this will remain a part of his school experience.

If you’d like to donate to the Juvenile Diabetes Research Foundation, you can do so online. If you would like to support Jacob, go to Support a Walker in the lower right-hand corner and search under Team Name for “Jacob’s Space Walkers.”