Pump Visit Number Six: Don't Worry, Be Happy

The day after her NYC trip, M has to go in for another pump visit.

We arrive in a timely manner this time, and our DNE looks over M's numbers.

To her, they look fine, even though they range from 45 to 389 mg/dl. The DNE speculates aloud that perhaps I don't like the feeling of losing control of M or the management of her diabetes. I am "worrying too much."

I think to myself, that once M demonstrates consistency, I will be more than happy to completely hand over responsibility for her care. As it is, she is very much in charge. I simply remind her to check her bg before going to bed, and ask her what her results are maybe three times per day, to make sure we are staying on top of any body changes. All changes we make in her dosing are discussions in which we compromise and agree on a course of action.

However, I find that when dealing with medical professionals with whom one disagrees, it is easier to let him or her think that you agree with them.

For example, when my son was an infant, he was nursed (aka breastfed) exclusively for six months. Then he moved straight to solid food. I think he ate two jars of baby food, and then started grabbing food out of my hand at dinner time.

The doctor wanted me to start him on whole milk right away, because "babies need fat." While I agree that babies need fat, it doesn't mean that a 30 pound 6 month old needs fat when he is still nursing 4-6 times per day.

Also, she said, he would need iron supplements.

I am a "good girl", a rule follower. So I tried to give our baby the iron supplements. He gagged on them, cried, and spit them out. They irreparably stained his shirts. I found the exercise to be futile, as his blood iron levels were healthy prior to my attempts to administer the supplements.

Logic, sometimes, must rule over whatever the doctor said.

I explained my objections about whole milk to the doctor. I said, "The baby's nursing 4-6 times per day, and eating a pint of Ben and Jerry's every week. I think he is getting enough fat for now. I don't enjoy drinking whole milk, so he's getting 2% like the rest of us."

The doctor grew alarmed, thinking that I was putting my son "on a diet", and cautioned against doing something so dangerous as giving him 2% milk.

Exasperated, I didn't even broach the subject of the iron supplements.

So, the next time we went in to visit the doctor, I lied.
Dr: "Is he drinking plenty of whole milk?"
Me: "Yes, he is."
Dr: "Does he like his iron supplements?"
Me: "He loves them."

See? That was easy!

Fast forward to this month, with the DNE, when she told me that I worried about M's bg levels too much, and suggested that I was some sort of control freak. I did not cite the research that I had read about those who had survived diabetes for 75 years or more. I did not say that the evidence shows that long-lived survivors all had tight control over their bg levels, exercised more often, ate more healthfully, and did not waver from 48 to 315 mg/dl in one day.

Instead I said, "Maybe I am."

She gets to be right, and I get left alone. Everybody wins.

And, of course, since I want M to be in that club of people who survive for years and years with this disease, I will continue to ask questions about her bg levels, what she ate, and how she is feeling.

After all, that's my job.

wooo, hoo, hoo, hoo, hoo, hoowooooh-ooh, oohoohooh...

Adjustments

We are continuing to struggle with high bg levels. It is getting better, but there have had to be many little adjustments over the past few days. After a startling 2:00 am low of 29, we were anxious about raising M's Lantus intake any time soon.

For the first time in months, I sent a lengthy e-mail to M's Diabetes Nurse Educator (DNE). These e-mails are a pain. In order that she might give us appropriate advice, we need to include the following information:

1) number of carbs M had every time she ate
2) What her bg level was each time it was tested
3) What time of day she tested her bg
4) What her carb ratio is each time she injects herself
5) What the correction factor is each time she injects herself
6) How many units of insulin she injected and what time she injected it.
7) All of this data over a minimum period of four days. A week is preferable for tracking trends.

We track all of these things in a little notebook. Then I have to transcribe them into an e-mail.

It took me over an hour to compose this e-mail.

A few hours later, I check my inbox. I got an "out of office" reply. She'll be back on X day due to a family emergency.

Doesn't she know that she is not allowed to have family emergencies?

The message also indicates who to call if we are having an urgent problem.

Well, a funny thing happened as I was transcribing all of the necessary information into the e-mail. I began noticing patterns, and began exercising a part of my brain that had been dormant for the past few months as I sat back, smugly satisfied that M had everything under control. Perhaps it wasn't quite urgent enough to call some stranger, no matter how well-educated they are.

Which part of the brain is that? The mathematical? The emotional? No. The diabetes part.

Oh, yes. There is a diabetes part of the brain, it's just that most of us have no use for it most of the time.

So, her bg is lower at night, but REALLY HIGH at morning snack, lunch, and afternoon snack. By dinner, after so many high doses of humalog, the bg has been wrestled more or less into range. In other words, its REALLY HIGH nearly all the time except at night when it sometimes is REALLY LOW.

So here's the plan: Raise the Lantus by one unit to (the obscenely high number of) 42 units. Increase the correction factor by 2 at night, thus offsetting the higher dose of Lantus. Reduce the correction at breakfast to tackle the high numbers yet to come.

We had a "good" day yesterday, with bg ranging from 87 to 205. We did have one crazy 340 mixed in there the other day, but the mystery was solved when it was revealed that M had not calculated her yogurt into her dinner carbs. 25 uncovered carbs can wreak havoc on your bg levels.

While this range is not what I am accustomed to (something like 75-165), it is much better than the 29-398 of the past weekend. We are continuing to tweak ratios and corrections as we prepare for our big "Pump discussion" with the DNE next week.

Two end notes here. I am now tracking all of M's info on a spread sheet set up by my adorable engineer husband, who likes to analyze and eliminate variables. I sent it as an attachment as I e-mailed this new info to the DNE. That was much less time consuming, and all of the data is now at my fingertips. As long as I am at my home computer, that is.

When I sent it, I got another out of office e-mail. Sadly, this one said that the DNE would not be in the office due to a death in the family. I will have to assuage my Catholic guilt for cursing her family emergencies by buying her a sympathy card.

"I hope they have sympathy cards where we are going."

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.