On her own

M attended the local public school for her freshman year, and it seemed to go well. The nurse was very thorough, sometimes to the point of being invasive. M enjoyed the nurse and her assistant, however, and the relationship was fine, even if the nurse would seem to want to give a little too much input about M's care.

Because the nurse was at a public school, she needed to be sure that all of the "t"s were crossed and the "i"s were dotted, which often left me looking like an incompetent parent.

You see, since my kids spent most of their lives in private schools, the mountain of paperwork I was required to fill each year for the public school seemed ridiculous.

I think I had a little subconscious rebellion against it too, because I would unwittingly submit incomplete paperwork. There would be a signature missing on one form, the double sided form had only one side filled out...you get the idea.

Anyhow, halfway through her sophomore year, M decided that she might meet with better success at the same private school attended by her brother.

The nurse at the public school diligently forwarded her forms to the private school, only to be met with indifference.

There is no nurse a M's new school.

There is a designated adult to deal with the storage and administration of medicines for those students who have chronic health problems, or perhaps those on medication for their ADHD (Is that considered a chronic health problem? I wonder.)

So my attitude had to shift again, toward taking on more responsibility as a family.

Honestly, it was kind of a relief.

I wrote my standard "Greetings! This is what diabetes is, and how it will likely affect you and your classroom" letter. Shortly afterwards, I received a letter from the dean of students, letting me know that all of M's teachers had met to go over my letter, and had been instructed to contact me with any questions.

I was never contacted.

Weirdly enough, when M's parent/teacher conferences came up, no one even mentioned her diabetes, because she was doing fine. Her blood sugar had been pretty even, and her grades were pretty steady. He behavior was good ( you know, for a teenaged girl), and she was making friends.

But I guess it didn't surprise me that much.

What I have learned about my daughter is that she will rise and sink to suit the occasion. In this case, she was treated like a responsible young adult, who is able to monitor and control her disease independently.

And guess what?

She is.

Broke (or How to Replace Your Pump)

So a few months ago we had a little problem.

M's pump broke.

That's right, it broke. It started scrolling numbers independently and did not deliver insulin or anything else.

Now, I have to say that Medtronic makes a pretty tough insulin pump. M drops it on the floor from the chair in which she watches television on a fairly regular basis. It is often unprotected at the bottom of field hockey and lacrosse equipment bags, and she shoves it in the map pocket of my car when she goes for a swim on hot days.

So I can't complain. And neither can she.

We made this terminal discovery on the way home from a lacrosse game.

Typically I attend M's games so as to relieve pressure on the coaches as far as looking out for M's diabetic needs. She has not had a problem during a game since high school, but I think the girls on the team also kind of like the idea of that crazy mom coming to every game, even if it's two hours away. Bonus: I get to see her play every time. On a few occasions I have been the only "away" parent in attendance. Unfortunately for the team, I am not a yeller. I am an urgent whisperer, which means they don't really hear my cheers of support. But I digress.

Although I encourage M to take the bus back from the game as part of the team bonding experience, she has thus far declined my offer and rides with me in the car, usually chowing down on a sandwich and a bag of chips, while beating herself up over the goals that the opposing team scored.

This is how it went down:

M: (fiddling with the device) "What the....?"
Me: "What's the matter?"
M: "This stupid pump! It did this this morning, but I got it to work. Now it just won't stop scrolling numbers!"
Me: (slowing down and taking my eyes off the road), "What? It was doing it this morning?"
M: (Smacking the device with the palm of her hand) "Yeah, I thought it was the battery. But I changed the battery at school, so that's not it."
Me: "Did you try....?"

Needless to say, voices continued to rise in tension and anxiety. I had M check her bg levels.

Fortunately they were pretty even, buying us some time until we could give her an injection at home. But we soon realized that we would have to do something to solve this problem more long-term.

Since we were in the car and the pharmacy was closed, we decided to use modern technology to help solve our problem. M looked on the back of the pump and found a toll free number to call. After a brief argument in which she tried to convince ME to call, I, as the driver of the car, convinced her to dial the number.

She did. And she did an amazing job.

She talked to the representative from the company, explained who she was and what was happening. After about 10 minutes, the rep determined that M's pump was beyond repair and needed to be replaced immediately. M gave the rep all of the necessary information, and then did something very smart: she asked if it was under warranty.

Now I can truly say that my baby was growing up!

It was, indeed, under warranty, which meant that a "free" purple replacement was on its way.

M concluded the phone call with her pump company, who recommended that she contact her DNE.

With a heavy sigh, M dialed her new DNE at Dartmouth Hitchcock, knowing that it was after hours and that she would need to talk to the answering service and wait for a call back.

The DNE returned her call right away, told her to take an injection of Levemir; the long-lasting insulin that typically goes wasted in our fridge, and asked when the pump was due to arrive.

It was due to arrive in two days, which I found incredible, but the DNE found disappointing. She told M that they are typically shipped to arrive within 24 hours. Then she and M had to figure out her carb ratios and correction factors for the next couple of days of injections. The phone call concluded mere minutes before we landed in our driveway.

M moaned that she had forgotten how much more work it was to calculate, draw up insulin and inject oneself several times each day. But she also felt really proud about handling her own care, and was pleased to have a plan, even if it was less than ideal.

I was also proud. And relieved. She moved one step closer toward independence by handling an equipment malfunction without any interference from me. And I was around to witness it and see that she did it well.

When we arrived home after lacrosse practice the next day, there was a sticky note from UPS on our door. We had missed them, and our package needed a signature. The pump had arrived within 24 hours after all!

I called the number on the note, and learned that we could pick up our package in person between 8:00 pm and 9:00 pm that night. Even though the center was a 45 minute drive from our house, M and I eagerly jumped in the car to do just that.

We tore open the box in the car. Pump in hand, M gleefully looked forward to getting away from her injections yet again.

We carefully read everything in the package, and learned that we had two weeks to return the broken pump via a pre-paid envelope. Failure to do so would cause us to be billed for the entire cost of a new pump (about $6500!). Needless to say, that sucker was in the mail before I went to bed that night!

Medtronic made it pretty easy. It was brilliant that their customer service number is right next to the serial number on the pump itself. Their service was excellent, and saved M a lot of inconvenience. And M, up for the challenge, enjoyed the sweet relief of knowing that she could handle it.

Meter

When M first acquired her Medtronic minimed insulin pump, it came with the niftiest little thing: a meter that communicated M's bg levels to her pump after she tested her blood.

After testing her blood, her pump would vibrate in recognition of the information, and then would propose a course of action, as in :"Hey, your blood sugar is 239 mg/dl, I think you should take a dose of 4 units of insulin to bring it back to range. Shall I go ahead and do that for you?" M would press various buttons to confirm the action, or type in how many carbs she was planning to eat at that time so that the pump could recalculate her dose for her. Either way, it saved her some steps in calculating.

About a year ago, M's bg levels were high (250-300) for a few weeks, despite our best efforts to keep firm control on her levels, frequent checks, etc.

When we visited the endocrinologist, we learned that M's A1c was 6.3, which we found odd, as that is very close to the normal non-diabetic range.

We explained our confusion about the numbers that were being shared with us, and the endocrinologist, without even glancing at any of our devices said, "Oh, her meter is broken. Here's another one."

The one she gave us was a free sample left behind by a representative. It did not communicate with M's pump directly, but she could plug into the pump the numbers that her meter gave her, and the pump would still perform the calculations as before.

I think both M and I agreed that the best part of this meter was that it used nice ultra-thin lancets in the lancing device, One Touch Delica. The thinner lancets would help her to avoid callouses on her fingers, and didn't hurt nearly as much to use. So all was fine.

When M recently visited her new DNE, she asked about M's meter, and whether she typed in the low bg levels that she received on her meter into her pump. M said no, she normally just ate or drank something to bring her bg back up. Short answer, not all of her bg levels were stored in the tiny computer in her pump. The DNE had the meter 's information downloaded separately so that she could get a more accurate picture of M's profile.

She advised us to call the pump company and ask for a new meter, which she implied would likely be sent to us at no charge. But after a moment's thought, she searched in her storage room and found a meter that could communicate with M's pump, and gave it to us.

I had forgotten how convenient having such a meter was. This one is called the Contour Next Link.

One of the things I like about this meter is that the numbers are very bright and large for the first few seconds after you take a reading. This means that we do not have to turn on the light for middle of the night checks, and I can see M's results without peering over her shoulder.

I also like the test strips that go with it. They require a lot less blood than the last ones we used. Furthermore, the strips are packed in cylinders of 50 strips instead of 25 strips, which means there is less waste (As a tree-hugging dirt worshiper, I feel that anything we can do to cut down on the landfill that each diabetic is responsible for creating, the better.)

I am glad that we are hitting the point in our relationship with this disease that we can start to identify personal preferences in products. Anything we can do to make M more comfortable and that makes managing this disease easier is a gift.

A few days after gushing to  one of diabetic students about this new meter, I received a flyer about it. Apparently, Bayer 9the new meter's creator) is providing every owner of the Medtronic pump a free replacement meter.

Back up meter, here we come! I guess that whole piece about spending a wad of cash to keep your diabetic child alive pays off when someone is willing to throw you a freebie now and then.

In the meantime, M and I are loving the new gizmos.

Change

Change can be hard.

It can also be also be a chance to reflect on what is important.

This sweeping statement sounds somewhat romantic until you learn that I am talking about health insurance.

Up until recently, M was covered on her father's PPO coverage at his place of employment. This worked out pretty well on the day she was diagnosed. We paid about $38 each time we visited a specialist, and about $84 per month on insulin, and $87 per month on test strips. Also, we paid about $50 every six months for lancers, since M only changes them about once per day. Infusion sets cost us about $240 every quarter, so about $800-$1,000 per year.

All of this totals roughly $3100 per year in maintenance.

All very interesting, I'm sure.

But then Daddy got a new job. And insurance doesn't kick in for 90 days.

Okay then, let's get on Mommy's insurance plan: an HMO.

The insurance itself costs less, for sure. And prescriptions are a lot cheaper: $15 for test strips and insulin. Doctor's visits are $10. But M's current endocrinologist is not on the plan. In HMO speak, this means that the insurance will not pay anything toward M's care if we see her current doctor. At least on the PPO, if M's specialist was not on the plan, we would still get some coverage, but not as much as those "participating" in the plan.

So now what?

We have to change doctors.

We have been thinking about this for a while, anyhow.

After all, M's diabetes nurse educator would frequently give us conflicting advice, and although we asked repeatedly to be part of trials, we were never even told if any were going on. I assume that we were put toward the bottom of the list due to the fact that we live over one and a half hours from the hospital.

Fortunately, we have heard many great things about the hospital just 40 minutes away.

Searching the web, I learn which doctors are on our plan, which is somewhat helpful, but I can't find any information about the doctors themselves. So I turn to my new resource: the STAR parents.

I send an e-mail to the group explaining our situation, and within two days I have the names of the two favorite pediatric endocrinologists in the Dartmouth area, as well as the name of a favorite Diabetes Nurse Educator.

I contact our PCP (Primary Care Physician) and request that we be referred to the new doctor. (For all of you Russians out there who are mysteriously reading my blog, we in the States cannot refer ourselves to our own specialists: another doctor must "officially" make the request in order for our insurance to approve and pay for the visits.)

Service was excellent, and within a week I received a phone call from the new hospital confirming an appointment with our new DNE. The copay for the visit was $10.

So an HMO doesn't sound too bad, does it? Lower prescription prices (even if they do give us 100 fewer test strips per month), lower copay prices, a specialist nearby....

Except that if the diabetic stuff hits the fan, and we need to see someone "outside of the plan", the expenses may very well not be covered.

Which is why, after 90 days, we will be switching back to a PPO through Bill's new job. I will continue to remind myself: change can be good. But hopefully after the 90 days, we won't have to make another one for a while.

Unpopular

In the STAR program, we had a parent meeting about 504 plans. Everyone in the room talked about how hard it was for them to get teachers and administrators to follow the 504 plans for their child.

When it was my turn to speak, I admitted that I didn't use a 504 plan.

The group leader was evidently distraught at the prospect of a diabetic child running around without some sort of paperwork marking her as "special".

I explained that each year I write a letter to every teacher and coach that comes into contact with M, and cc the school nurse, who is obviously aware of her condition. I believe that for M, this is special paperwork enough: especially since (so far) I have a system of open communication with the school she attends.

A parent in the group asked me if teachers allow her the special accommodations needed to manage her type 1 at school. I responded that yes, they do, although M sometimes needs to remind them that she has diabetes.

For example, M's math teacher, whom she adores, was giving a test when M realized that the tubing on her pump was leaking. Panicked, she raised her hand and asked to go to the nurse.

"Can it wait?" the teacher asked.

M shook her head, "no" and was sent on her way.

When I spoke to the same teacher at a regularly scheduled parent conference, she admitted that she had forgotten that M had diabetes. "I assumed it was a female issue", she told me.

We took that opportunity to explain what diabetes is, and the multiple ways it can present itself in class.

She was sincerely fascinated, and we nearly ran over the allotted time.

A parent in the group said that rather than having to give "mini lessons" like this to M's teachers, a 504 would educate them. and save me time. Then she told me about her yearly ritual: she holds a meeting with all of her child's teachers at the beginning of the year to explain what diabetes is, and how to care for her child. Then each teacher is handed the 504 and the care plan, and asked if they have any questions.

I listened to her, and what she said made sense. But arguing that the 504 would somehow save me time was not true. I could hold such a meeting with M's teachers and never hand them a sheet of paper.

I was smart enough not to say this, however.

But the group leader leaped on the parent's comments and took the opportunity to press the issue with me. As the entire group looked on, she explained that since the 504 is a legal document that it would protect our family. "From what?" I wondered. If something serious happens to M in school, all a 504 does is give me the right to sue the school, which, considering that I had already laid it all out in a letter, is probably true anyway. Suing a school wouldn't help me, and a 504 is no guarantee that she would get the care that she needed. I mean, I know it couldn't hurt, but with only two and a half years left of public high school, was it really worth the effort? After all, when she was in a teeny-tiny Montessori school, M didn't even have a school nurse and managed quite well.

The group leader told me that she would be happy to help me with the legalities and formation of the document, to which I shrugged and replied, "You know, it's a lot of work, and I just don't want to do it."

After that little tidbit popped out of my mouth, a nano-second of doubt occurred: a tiny moment where I felt sure that I had said the wrong thing and would be upbraided in front of my peers.

But nobody said anything, and we just moved on to another topic.

Yea me!

Now we'll see if anyone talks to me at the next meeting.