Lather, rinse, repeat

5:45 am - M wakes up
6:00 am - She comes downstairs and decides what to eat.
6:05 am - She calculates how many carbs are in the food she eats.
6:08 am- She checks her bg levels with her monitor
6:10 am - She records the results of her bg levels and her carb amounts onto a sheet of paper
6:11 am - She calculates the amount of insulin she needs to cover the carbs ( carbs divided by 10) and the amount of insulin she needs to correct her bg levels (bg minus target level divided by 21)
6:14 am - She adds the two amounts of insulin - to cover carbs and to correct bg levels -  together. The result is how much insulin she will need to take this time before she eats.
6:15 am - She screws a needle onto her humalog pen and dials the amount needed to the nearest 0.5 units
6:16 am - She gives herself an injection, either in the belly, the back of the arm, or the leg.
6:17 am - She eats. Then, if I am lucky, she cleans up the debris from the procedure (bloody test strip and wrapper, needle cover, needle wrapper, needle...)
6:25 She brushes her teeth.
6:30 We leave for school.

Repeat at 9:30 am, 12:00 pm, 6:00 pm, and any other time she eats.

At 8:00 pm she gets a syringe full of Lantus.

9:30 pm - She goes to bed. Usually.

                            M's best friend. Well, her best electronic friend anyhow.

The pump versus the pancreas

M has returned from diabetes camp this year to tell me that she would like to wear a pump. An insulin pump is one of those somewhat misunderstood inventions that people ask me about.

"Can't she just get a pump?"

Sure, she can. But it doesn't do what you think it does. It is NOT and artificial pancreas.

In a normal human being, this thing called the pancreas does this really important job. It's hard for most of the American public to know this, because nobody outside of the medical world seems to know what it does. On a recent TV show, I heard the line, "So what does a pancreas do besides get cancer?"

Good question. In very simple terms, it breaks down sugar into small enough bits that your body can actually use them. When your pancreas dies (yes, dies, not "stops functioning properly", because that's just sugar coating it - pardon the pun), it can no longer do the very important job of making a large portion of your food useful. That is why diabetics pee so much. They are peeing out their food. Then they are thirsty because they are peeing so much. It is also why they get skinny really fast. They are peeing out all of their food.

In other words they are starving to death, even though they are eating. Without the necessary nutrients, the body starts to eat itself, starting with very important organs, like the kidneys.

                     The pancreas: The ugly little thing you didn't even know was there.

So, anyhow, the pancreas is very smart. It senses how much sugar you have ingested, and releases the appropriate amount of insulin to break the food into usable bits. Not too much, not too little. It monitors the blood glucose level, and releases the appropriate amount of insulin. See how I wrote that twice? It's important.

A pump releases insulin. That's what it does. It does not monitor blood glucose. It needs to be told what a person's bg levels are, and mechanically dispenses what it is told to dispense. My concern: in theory, a person's blood sugar could be low, and the pump will continue to pump insulin into the body. Now the low bg become even lower and possibly life threatening.

Now, don't get me wrong. I am grateful that my daughter was born in a time where:

1) She won't automatically die from diabetes.

2) Insulin is easily measured and dispensed.

3) Bg levels can be tested pretty accurately by blood sticks rather than by using urine, which tells you what your bg WAS a few hours ago.

4) I don't have to boil syringes.

5) Needles are pretty darn tiny.

6) She has options to treat her diabetes. Including the pump.

I just have a lot of questions. And I don't think that's wrong.

Lying to the nurse

When I first told our Diabetes Nurse Educator that my daughter did not have a nurse at her school, she was quite concerned.

"What will you do in case of an emergency? Who will be trained to monitor your daughter? Who will check her math before she administers her doses of insulin?"

Just to keep things simple I lied. Well, not really. I told her the truth, but I knew I would not be using the solutions I proposed.

There was a public school within walking distance of M's school. There they had a nurse. Our state requires that children in private schools, who have special needs, have access to the services they require. The services are provided by the school district in which the private school resides.

In other words, if Sally's school is in Concord, and Sally has a reading disability, she may obtain services through the Concord school district.

We can discuss whether this law is fair later.

As such, M had legal access to the services provided by the public school that was within walking distance of the private school she attends.

This seemed to satisfy the nurse.

But I was lying. I was never going to have the nurse from the school across the field come serve my daughter, check her math, or anything else. She is too busy, and the whole idea was just complicated.

Here is the truth. The school where I work is exactly one mile from my daughter's school. It is on the same side of the same street! I could RUN there faster than it would take a nurse from another school to disentangle herself from her normal caseload to attend to my daughter.

Another truth is that the people who run my daughter's school are NOT useless idiots. They are quite reasonable and intelligent. In fact, they have been some of the strongest partners in allowing my daughter to manage her diabetes at school.  M's current endocrinologist wonders if going to a school with a nurse might change just how well M manages her care, and not for the better.

M's teacher, a man in his late 50s, had already developed an interest in diabetes. He is what some medical professionals call a "borderline" diabetic. He began researching diabetes, and to monitor his own bg levels. For the first two months of M's diagnosis, her teacher would sit with M, and the two of them would test their blood sugar together. Then together, they would calculate how much insulin she would need to cover her meal.

After those two months, summer came. But by the time summer was over and M entered her first full school year as a diabetic, she was a pro. In addition, she knew she could ask her teacher for help, and he knew what he was talking about.

As far as training, I trained the staff myself. They were attentive, and truly part of the plan to keep M healthy. I never had the hospital fill out the special forms needed to make sure that M's needs were accommodated. No 504 plan, no written instructions directly from the doctor.  I did, however, have to face the slight paling of the group as I described how to administer glucagon.

It took me a year to tell the truth to the nurse. After M had a couple of A1Cs of 6.4 to 7.0, I thought it might be safe to share our secret with her.

She took it well, but she said that she wanted me to continue to hold the nurse up the street in reserve.

I lied to her and said I would.