Pump Visit Number Four: LIVE

We are home now, after a long drive to and from Children's Hospital.

When we scheduled M's insulin pump appointment, we were informed that it was a very special appointment that could only be made on Wednesdays at 8:00 am. This means leaving the house at 6:00 am, but M thinks that it is worth it.

We receive a phone call two days before the appointment that assumes we are slightly less than "all there". We are told to bring a list of items that a diabetic would typically find elementary. While I understand that the nurses at the hospital often have to deal with inept people, I find the list mildly insulting.

Bring:
1) insulin (mentioned twice)
2) the pump (!)
3) an infusion set
4) a reservoir
5) the bg meter
6) a bottle of chardonnay (I am just kidding about that one)

The night before the appointment, we gather all of the needed supplies into a JDRF backpack, and go to bed a little early.

The drive to Children's was trafficky and long, due to a lot of rain, but we arrived safely and on time.

The visit itself was a piece of cake. The DNE reviewed everything that the pump rep had told us last week. May played with more screens, and created her settings for trial and error with the pump.

One interesting fact. She had taken her Lantus the night before. Being that it is a long-lasting insulin, it was still in her system. So how do we make sure that she doesn't get a double dose of insulin? After all, the pump is supposed to feed M a basal rate of 1.35 units per hour. Wouldn't that make her dangerously low?

We learn to set the pump for a temporary basal rate of 0 units per hour for the next 12 hours. Then we start her on her new basal rate tonight.

Sleepless nights are coming again. M has to check her bg at midnight and 3:00 am. Which means I have to get up and check M's bg at midnight and 3:00 am. She will also need to check it before eating, and two hours after eating for the next week or two. Lots of finger sticking, but all for a good cause.

M felt good leaving the office. We began the long, rainy drive back home. Then M got hungry. We stopped at the healthiest place nearby: a Hess station. I got gas for the car, and raided their ice cream selection. I needed something relatively soft. Not only does M have diabetes, but she also has braces.  Which were adjusted yesterday. So her mouth hurt.

Ice cream sandwich: 43 carbs. No. Ben and Jerry's single serve: 29 carbs. Much better.

M smiles as she receives her tiny little gift, with a tiny little spoon in the lid.

Then it hits me. She only has to enter the number 29 into her pump, and BOOM, it's all calculated and dosed. Her first pump-injected insulin is coursing through her system.

This might make life a little easier after all.

Are we live? YEAH!

The Deal

You know,  once we've become parents, we've signed up for "The Deal".

The deal that says we will do everything in our power to protect our offspring and bring them forth to a healthy, productive adulthood.

I signed up for this deal. I signed up willingly. Eagerly, even. I enjoy being a parent, and hope that my guidance will provide my children with what they need. I try really hard to do justice to the deal. I nursed them, I held them, I scolded them, I advised them.

Things seemed to be going along swimmingly. My kids arrived, composed of good raw material, and I didn't mess them up.

At least not too much.

Then this whole big monkey wrench called diabetes came into the mix.

Now just one second. I don't remember signing up for THIS deal! In THIS deal, I have to watch what my daughter eats like a hawk. She gets pretty snippy about it, too.

In THIS deal, I have to make sure that my teenager isn't falsifying records so that I won't worry about her, because "she can handle it."

In THIS deal, I have to become one of THOSE parents, who needs to make party hosts, coaches, and teachers aware of a condition that makes my gorgeous, intelligent, funny daughter less than perfect. I have to work hard not to wax dramatic by pointing out that it is life-threatening. Even though it IS life threatening.

In THIS deal, I have to let her go deal with it herself, or else she will NEVER be able to do it on her own. If I don't let her make mistakes now, how will she handle life in college? The dating world? The bakery?

In THIS deal, I have to wonder which mistakes she makes are acceptable, and which ones might kill her, and then somehow make her understand the difference, when maybe I am not entirely sure myself.

I am not fond of THIS deal. No siree, Bob.

I am not sure who in the universe thought I would be equipped for THIS deal. I would like to give that committee a piece of my mind.

Because you know what? Even if I deserve THIS deal. My daughter, most certainly does not.

Pump Visit Number Three: Noisy Tamagotchi

I am not sure how much this episode can be considered a pump visit, but since it involves further education regarding the insulin pump, I decided that it counts.

We have a pump educator come to us to start M on saline.

The pump educator works for the pump company, and tells us that we will want to go to see the DNE in about a week to see how we are doing, and hopefully to get M on the pump "live". In the meantime, where do we live so that she can come to our home to train us and get M started?

We live nowhere near anything.

I ask the nice representative where she is coming from. It is nearly one and a half hours from my home, but a mere 45 minutes from where I work. I ask her if she would like to meet us around 3:00 pm at M's school. I assume that this will be okay with the administrator.

The representative agrees, and the appointment is set for a couple of days away.

We all arrive at the school and set up at a round table in the administrative area of the building. M has brought her infusion set, her reservoir, her bg meter, test strips, and, of course, the pump itself, all stocked up with fresh batteries.

We go through diabetes 101 again, and then the pump rep shows M all of the cool safety features, many of which I had read about.

I think that the pump sounds like a really expensive Tamagotchi. If you don't do something to it on a regular basis, it starts beeping at you. Don't touch it for twelve hours, and an alarm sounds, because it thinks you are in a coma and you need someone to help you.

After all of that, M uses the reservoir to draw out the saline from the vial that the rep gives her. Then she makes sure that the little screw that pushes the insulin out of the reservoir is rewound to the start position. M attaches the infusion set to the reservoir, and the rep realizes that she is our of alcohol swabs.

"They were recalled this week, and I forgot to put new ones in my bag."

Recalled alcohol swabs? Really? I guess the medical profession can't be too careful in our litigious society!

M pokes the infusion set into her body, and she's good to go.

Throughout the training, various people stop to sit and watch, or stand and ask questions. These people include teachers, the principal, and students. Everyone wants to know how M's new toy works, and how it will make her life easier.

M and I found this behavior perfectly normal. Supportive, even. The pump rep had to be put at ease. "Don't worry," I tell her, "This is like our family here." I realized that she may have been concerned about HIPAA, but in reality, these people need to know what all this stuff is on M's body, and what to expect.

So, with a quick quiz at the end of out one and a half hour visit, M is using the pump to calculate carbs, do phantom boluses, and pretend to cover bg highs. All using the miracle of saline.

In another week, she will be using the pump without a net.

At least the batteries for the pump are easier to find than the batteries for this little fella!

The Pump arrives

The pump has arrived!

Since such an expensive piece of equipment requires a signature upon delivery, we opted to have it delivered to M's school. One can never predict when one will be home, but the owners of M's school not only own it, but also occupy the upstairs. Someone is nearly always there.

I received the phone call from Wanda, the school's director, letting me know that the pump has arrived, and that I can pick it up at my convenience.

My husband Bill and I take a drive to the school to pick up the pump. I bribe him to come along by telling him that we can look at motorcycles - an annual spring ritual that sometimes ends up with us actually buying a motorcycle. Being a good husband and father, Bill has sold his last motorcycle when M was diagnosed, so that we could pay her medical bills. The previous one he sold so that we could pay Big Brother's tuition. It's probably about time to get another one.

Bill agrees, and we take the half hour drive to the school to pick up the pump. We nervously leave it in the car while we browse the motorcycle selection. We look at stupid bikes, ugly bikes, and nice bikes. Then we leave so that M can view her new pump.

When she climbs into the car and sees the box, she makes little happy squirrel noises. She wants to rip the box open right then, but we ask her to wait until we get home.

We tear open the box immediately.

Inside is the pump ( a Medtronic Revel), a lot of manuals, a HIPAA policy, four boxes of infusion sets, four boxes of reservoirs, four AAA batteries, a One Touch Ultra Link glucose monitor, and a USB stick.

I had been told by the area rep for the pump company that M would be okay if she wanted to start pressing buttons on the pump. She wouldn't hurt it.

She pulled it out and pressed buttons, while I showed my parents what the infusion sets looked like. They had been reading up, and understood how they worked. I didn't have to explain that the infusion set is not surgically implanted.

Then I pulled out the reservoirs. All of this equipment looked pretty confusing. I figured I would have to read all of the literature that came in the box before I understand it all.

The first booklet of literature was called "The Basics of Insulin Pump Therapy". I read through it. There was no news in there. Check bg a bunch. You will still have to take injections once in a while. Bg is affected by diet and exercise. Basal is the constant insulin, bolus is the insulin you take to cover food that enters your body or to cover a spike in bg. Lows are caused by insulin. This was diabetes 101.

I figured I would learn more in the next booklet, "A Step-By-Step Guide to the Minimed Paradigm REAL-Time Insulin Pump." On page four, I found a diagram of the pump and all its parts and functions.

This helped a lot.

Now I understood what all this other stuff did.

Evidently, we were going to go back to purchasing vials of Humalog, instead of the cartridges that we had been buying for M's super cool insulin pen. The reservoir has a little plunger on it that sucks the insulin out of the vial for easy storage in the pump. According to the information in the booklet, the reservoir should hold about two or three days worth of insulin.

The screens and buttons on the pump can be locked or protected.

There is an airport card that can be given at airport security so that you don't have to remove your pump when you go through screening.

The bg meter will communicate with the pump, which will help it to calculate which dose you should give yourself, but will not administer the insulin until you tell it to.

Cold insulin tends to form air bubbles in the reservoir and the tubing, so it is better to fill your reservoir with insulin that is at room temperature.

There are "alarms" on the pump for empty reservoir, weak battery, failed battery test, and no delivery.

There are "alerts" for low battery and low reservoir.

M has been playing with the buttons. She has put the correct time and date on her meter. She has been wearing it, even though it is not attached to her body yet. She can't wait to show it off.

Now we wait for the trainer to call us to schedule M's "saline start", her week long practice with the pump using saline ( "It's like salt water" she told her grandparents.)

I can hardly wait to learn more about diabetes management with the pump: something I never thought I would have to know, nor did I intend to know anything about.

Flexible Spending

I think I have written before about the glories of the Flexible Spending Account.

I love having one. The Flexible Spending Account, or FSA, is not the same as a Health Savings Account, or HSA.

The FSA was first introduced in the 1970s, but being that I was under 12 at that time, I was not aware of it or its benefits. It seems to have increased in popularity lately, because health care costs have been increasing. Or maybe now that I know what it is, I hear a lot more about it. I remember hearing about FSAs for the first time during the Clinton administration on Good Morning America, but at the time my husband was a student, and I worked in a private school, neither of which offered any kind of benefit package.

Basically, an FSA is a benefit that employers can offer employees, along with 401(k)s, disability, and life insurance. You agree to have a preset amount removed from your paycheck, before taxes. This money is then set aside for pre-approved purposes, like health spending or dependent care. You could use this money for any health care items that are not covered by your insurance. Your deductibles, your prescriptions, chiropractor visits, and medical equipment could all be purchased with the money in your account. Since the account is pre-tax dollars, you will not pay taxes on the medical expenses paid out from your account.

What I like best, however, is that for those of us living somewhat close to the bone, when an unexpected expense comes up, you know that you can pay for it, because the money is already set aside.

There are two disadvantages, however.

One is that you must pay your expense out of your own pocket first, then be reimbursed by the company who manages your account. This can be tough when you are, for example, buying durable medical equipment like an insulin pump. Maybe you can't come up with the $1600 up front. In these situations, many people put the equipment on their credit card, then pay off the expense when their reimbursement check arrives. I have heard that some plans offer debit cards with a preset amount on them, but I have yet to meet anyone with one of those. I would LOVE one. It sure would be more convenient.

The second, which infuriates a lot of people, is that you must use all of the money that is set aside in your account by the end of the year. Actually, there is a two month grace period, as long as the EXPENSES occur during the year during which the funds are set aside. If you do no use all of your money, it goes away. In other words, it is forfeited back to your insurance company. Which makes sense, since we know how broke all of our insurance companies are, poor babies. I remember hearing on that Good Morning America episode about how it is important to set aside only the money you know that you will use. In other words, low-ball it.

My first real encounter with the FSA was quite by accident. My husband was working at a company that did offer the plan, but I didn't pay attention to it. Then one year, my husband's paycheck seemed suddenly much larger. When I looked at the previous year's pay stubs, I saw that we were having about $150 per pay period taken out for something I couldn't identify. When I called HR, they explained that we had signed up for the FSA, and that these deductions were going into our account.

Well, no we hadn't. The HR department at his employer made the Keystone Cops look like the Navy Seals. I am sure some incompetent boob put our money aside and left the next person in the alphabet alone, wondering why he had no FSA.

I know when not to pick a fight, however. Instead of railing against incompetence, I asked the nice lady on the phone if there was any way to get our money from last year back. The woman sighed loudly in anticipation of actual work. Then she explained, through what sounded like gritted teeth, that we couldn't, unless we could a) find receipts for $3600 worth of medical expenses that we paid AND b) that those expenses had occurred during the previous year. If, and ONLY if, we could do that, could we c) submit the expenses, using the proper forms, before March 1st.

$3600 is a great motivator. And besides, Older Brother had recently gotten braces. I needed only to ask the orthodontist to print out a receipt to get my money back. Which I did. So HA! In your face HR people!

After that, we began actively using FSAs whenever they were offered. Back then eyeglasses were covered (they are not now, thanks to the new health care legislation), so we set aside about $1000 per year.

The year M was diagnosed, we had set aside $3500 for braces. We were a little bummed when the orthodontist told us that she wouldn't be ready for braces for another 18 months. We thought we wouldn't be able to use up all of our money and would lose it.

But she was diagnosed. And we used it, and thousands of dollars beyond. Her second year of diagnosis, we set aside $4000. We used it easily. Now we are setting aside the limit that is allowed starting in 2013, $2500.

So paying for M's pump will be a little easier than it would be otherwise. Which means that she can have a pump sooner. And she can control her bg even better. And she can be healthier.

Which is why, even though it is not perfect, I love my FSA.

That's the name of the game!

Answer to: How much does an insulin pump cost?

The pump costs $6,500
After insurance, it costs us $1,586

There is no discount for paying the full price up front.
There are payment plans that charge you $5 per month to be on them.
The lowest monthly payment is about $55 for 35 months.

I pay the final payment on college tuition for the older child next month.

I will pay the pump people the full amount them.

Thank God for our FSA.

Sick

Tap, tap, tap "I puked."

It was three in the morning, but M was outside my bedroom door, and I had to spring into action. The first thing I ask is, "What day is this, Sunday?" She tells me it's Tuesday. Now I know I have to call in for a substitute.

I remembered that nearly two years ago, when M was diagnosed with Type 1, we were told that vomiting is very serious business that could lead to hospitalization. This was the first time in those two years that we have had to face this problem.

I remembered nothing. Oddly enough, when M and I went down to Children's Hospital for her infusion set appointment, I went out of my way to grab a pamphlet on sick day management. But where was it? Where was all the information I was given two years ago?

Braaaack

Okay, now that's twice. I am glad this child knows how to get all the way to the toilet.

She wasn't feeling better after vomiting, which is not a good sign. I mean, I usually feel fantastic after throwing up. It must be that rush of adrenaline...

BRaaaack.

Three times in less than half an hour. This is going to be a long night.

Okay, so a loss of glucose from vomiting can mean a drop in blood glucose (bg). We had better monitor this. We pull out the monitor, and with a comforting beeDEEP, we are advised that M's bg is 161. I think that's good, because it leaves us a safety net of about 80 mg/dl.

She vomits again. We test again. 172.

Again. test again, 162.

M continues to vomit every 15 to 20 minutes. It is 4:00. At this point I have pulled an extra mattress into her room, written up sub plans for my Spanish class, brought M a glass of water, and brought up enough test strips to supply a battalion for a week.

I doze between vomits. So does M. After a while I realize that a) I must call the substitute coordinator, and b) testing M's bg every 15 minutes might be excessive. I decide we will test every other time she vomits. I have a sheet of scrap paper with a long list of times that M has vomited. Next to it is the bg level.

The sub coordinator at my school is an excellent human being. He knows that I am never sick. He knows that if I will be out, I will leave plans. He know that I feel guilty if I screw something up. He understands me, because he, too, suffers from Catholic Guilt. When I call him, he gives me no indication that this is a bad time (which, I soon discover, it really was). He just says, "Okay, thanks for calling."

Having handled the school situation as best I can, I devote some time between vomiting episodes to trying to find that information about sick day management. Being that my brain is addled and I am exhausted, this is no easy task.

Two years ago, my mother had put together a binder with M when she was first diagnosed. It helped both of them to organize the information that M had, and made them both feel better empowered and informed. I locate the binder, but there is no sick day management sheet.

I look in the car, hoping I had wedged the guidelines I had taken from our last appointment in between the front seats  on my way back from Children's.

Nope.

I go back to the binder. BRaaaaack.

M's bg is 126. I bring up a Coke and ask her to take two sips. M's target is 110. 126 feels a little too close for comfort. I want wiggle room, baby!

Okay, binder. Now, let's look through each individual sheet.

I look. The only information I get is from the test strip company, that says "When to contact your doctor". Vomiting is at the top of the list.

Fine. I vow to call the doctor once office hours begin.

At 9:00 am I call the DNE, who is not in today, would I like to speak to the endocrinologist? As I wait on hold, my anxiety increases. I felt like I was fine before now, but the haste with which the operator referred me to someone else makes me nervous.

I speak to M's doctor, who tells me to watch her Ketones. Damn! I forgot about those things! M hasn't has a high enough bg to warrant checking them in a while. If the Ketones are higher than 2, Dr advises us to go to the hospital.

Now where are those Ketone test strips? M says that she doesn't know, and I sure as hell don't. I find the urine strips, but not the nice blood strips for her monitor. Hopefully she will be hydrated enough to pee. I have been forcing her to drink two sips of water every time she vomits.

I run up to her room with the urine strip. She is asleep. Sound asleep. For the first time in 7 hours, she looks comfortable. I choose to leave her alone.

After two hours she awakens. I explain about the Ketones. She says she can pee. She does, but then she gets upset. The Ketone strip indicates a 5 or a trace amount. She says, "Should I pack for the hospital?"

I tell her to hold on, I will telephone the DNE on call for the day and ask. I think "trace" doesn't sound that bad....

Before I get downstairs, the phone rings. It is Dr. She asks about M. I tell her about the trace. She tells me, "Trace is fine. Stay home. Why don't you phone the DNE on call, and fill her in, just so we have a baseline in case something else develops."

M doesn't feel like vomiting any more. The final score: her bg ranged from 126 to 202. I feel like congratulating myself. When I talk to the DNE, she does. "Good job!" she says.

She then advises me to allow M to stay a little high in her bg range over the next day or two. Also, reduce her Lantus by about 20% for tonight. After all, she has no stores on which to draw. Keep pushing liquids. Maybe see if she will eat some broth or something.

Phew! We made it through our first test.

Now for the big question: Will sick day management be easier on the pump?

Boo on being sick. Double Boo on being sick with diabetes.