A very long appointment

Tommy says:
On Thursday, my Mom and I drove about 1 hour after dropping my brother off at school. I was happy to get out of school! We went to the same clinic where I went to get trained on my pump. My nurse, Sue was there to meet us. We went into the same room where I got trained on the pump. Lara from Medtronic was there with another nurse, Chris.

We started by putting in the sensor. A sensor looks a little like the pump infusion set. It helps take some of the fluid below my skin to be tested for sugar levels. There is a tool to help insert the sensor. It was a little confusing to put the sensor in the inserter. I felt it a little when I pushed the button to insert it. I could feel it for the first hour, but then I didn't even really know that it was there.

Then I stuck on my transmitter. I stuck a big padded sticker on the back of the transmitter and then stuck it onto my stomach. It felt like I was wearing a big band aid. We then plugged the cord that is attached to the transmitter into the sensor. The transmitter sends numbers from my body's fluid to the monitor.

After we had inserted the sensor and slapped on the transmitter, we had to tell the monitor to start calibrating. It takes 2 hours and 20 minutes to get a new sensor ready to read my numbers.

So while the Guardian was calibrating my Mom and Lara talked and talked and talked. The only part that was interesting to me was the computer downloading part and the actual end where I got to see my numbers.

After the appointment, I went to a sporting goods store and bought some basketball shoes. I missed the whole school day! It was pretty cool to be able to look at my sugar levels whenever I wanted. My Mom was more interested in my numbers than I was. She was kind of bugging me.

Hook-up conclusion: none!

Jenny says:

Well, here we go! Looks a bit overkill doesn't it?The 6 million dollar man comes to mind. He just needs his phone and his ipod hanging from his waist now. (Tommy took this photo while I was at work last night.)

The conclusion. None at this point. We covered many emotions yesterday. We both had many different feelings usually not at the same time. We were excited, fearful, happy, proud, anxious, disappointed, amazed, bored, annoyed, satisfied, and ecstatic.

More details later because I seem to be running many different directions right at the moment. But by the way, at 9:30 a.m., Tommy was 156 and dropping quickly. (That part of it is amazing!) I went and checked on him at school. The class was having a snack anyways. So it was good timing.

Hooked Up!

Jenny Says:

We got hooked up today! I got to Tommy's appointment and the Medtronic Rep. asked if I wanted to wear a loaner Guardian for 3 days! So we both have one on! It is late, and we are tired! Overall it went well. I'll fill you in tomorrow.

Medtronic Paradigm Real-Time Pump on Chris Jarvais-Canadian Olympic Rower

Jenny says:
The Medtronic Paradigm Real-Time Pump, available in Canada, uses the same sensor system that the Medtronic Guardian RT uses. Wow! I will tell my 62 pound son that he will someday look like this!




www.diabetesadvocacy.com/products_and_tech.htm

Annual Transmitter Replacement Fee

Jenny says:
We are busy studying the guide book, getting familiar with the software, and rereading Wil's blog before the appointment on Thursday.

One of the things that I haven't mentioned yet is that the transmitter needs to be replaced annually. Our local Medtronic Rep. told us that in order to make something completely waterproof, Medtronic needed to use a nonreplaceable battery in the transmitter. This piece should stay on while Tommy is in the shower or swimming. The battery or batteries should last about 1 year. I called today to find out what the replacement fee would be and found out that it is $500 for a new transmitter. Keep your fingers crossed that health insurance coverage comes soon because this sure is getting expensive when you add an annual theft/loss insurance fee and this replacement battery fee.

But we are still very anxious to start using the Guardian RT. I accidentally slept through the 1:45 a.m. check last night. I didn't check him until I woke up at 3:30 am. He was 51! The last two nights he has needed a correction at 1:45 a.m. It doesn't seem to follow any real pattern these days. I can't wait until I can see more numbers. It will be worth it!

Learned of lost Guardian, replacement insurance concerns

Jenny says:
A mom that I know through the CWD mail list, has a 8 year old daughter on the Guardian RT. Unfortunately, a few days ago, they lost the monitor. The last place they remember seeing it was in Walmart. I can see how this could happen. The monitor has a belt clip, but it is not tethered like a pump. So it can go anywhere!! I have everyone I know praying to St. Anthony. I guess that is suppose to do the trick.

As soon as I heard this I called our home owners insurance agent about coverage for Tommy's pump and new Guardian RT. He gave me a quote on a rider after he called headquarters. They came up with $213 annually to cover the pump and the Guardian RT if it is lost or stolen. I guess it was a cheaper rate because I am not asking our home owners to cover it if it is damaged, only if it is lost or stolen. (Medtronic says that both devices will be covered by Medtronic if damaged. Yes, even accidental swimming, dropped in toilet, ran over with bike, these are all covered. I asked.)

Our home owners agent suggested that I contact our health insurance first before getting the rider. I checked this afternoon and found out that our health insurance will cover, up to 1 per year, a replacement pump if lost or stolen. Great news. I'm not sure if it would be at 80% or not. So now I will just need to find out how much it will cost to insure the Guardian RT if lost or stolen.

I am also working on labeling all Tommy's equipment. He has 2 meters, a pump, and a Guardian RT that should all be labeled. I'm going to try somehow to fit a sticker on these things that says: Diabetic equipment for a child/Call immediately if found/###-###-####. Hopefully that will deter anybody who might otherwise think that it is something cool to steal.

Feb. 23 Official Hook up

Jenny says:
We were finally called to set up the appointment. It has seemed like a long time. We will be going to our appointment on Feb. 23 to get the official training. Our Medtronic Rep thinks that it will take about 2 1/2 hours.

I asked if we could have Tommy use numbing cream for his first insert and our rep. said that it would be no problem. Tommy is ready to give it a try. He is still very excited. There have been many highs and lows this week that could have been prevented or minimized this week.

I opened the box

Tommy says:
I think the Guardian RT might be kind of a pain because the monitor is pretty big and heavy. It also looks like it might hurt when I insert the sensor. But I haven't tried it yet. So I have no clue what it is like yet. I can't try it until I meet with my doctor.

TWO BOXES ARRIVE. HERE WE GO!

Jenny Says:

UPS just delivered the two boxes. I opened the sensors because they need to be refrigerated prior to use. (They came in a big styrofoam box with 2 cooler packs.)

I am going to let Tommy open the second box after school. He text messaged me with his morning blood sugar, and I text messaged him back with the message that his Guardian RT came. He sent back a single smiley face.

Finger Stick Post #1

Jenny Says:
I have had several conversations this week with various people with diabetes or parents of children with diabetes, including Wil, the man that blogged his Guardian RT experience, (www.lifeafterdx.blogspot.com), regarding finger sticks and coninuous glucose monitors. Tommy currently tests his blood sugar a total of 9-15 times a day (with 2 or 3 of them occuring while he is asleep.)

Our main motivation for getting the Guardian RT is to be able to be proactive and not reactive to this disease. It is to use the trends to head off trouble. (Sleeping more at night is also pretty motivating.) We are learning that the Guardian RT tests the interstitial fluid just under the skin. These readings may be different than the readings from our blood glucose meter. According to Wil and a Mom that has a child in a Navigator trial, you can get these numbers from the CGMs to be very trustworthy. In the case of the Guardian RT, you need to calibrate it daily for optimal readings. Wil is currently calibrating one at wake up, one at 4 pm and one at bedtime. He is getting good results. (He also tests his blood before meals and sometimes before giving a correction. He also tests before treating a low. But he doesn't enter them into the Guardian RT.)

So, to me that means that I can estimate that after our learning period with the Guardian RT, we might still be testing 5 or 6 times a day. We will be eliminating the 2 hour after eating tests and the 2 in the middle of the night. That is more than I thought we would be testing, but if it effectively helps us prevent lows and highs from happening then I think it is worth it. (We'll see what Tommy thinks.)

Wil said that he has not had any alarms in recent weeks. So that means no highs or no lows! That is truly amazing to me. And the Mom with the child in the Navigator trial seems to also have very low standard deviations like that.

Health Insurance situation
Jenny says:

The Guardian RT was approved late in 2005, so for insurance purposes, it hasn't even been assigned an insurance code. (Someone told me that new FDA things get insurance codes only at the beginning of the year.) So, I believe that there will be a more aggressive attempt to get the device and the strips covered by insurance in 2007 when they have a code.

I have had one brief conversation with our insurance company, and they told me that I should just have my endocrinologist send a letter of necessity and go from there. I have asked Tommy's endocrinologist if he could send one and really emphasize hypo unawareness. (Tommy does not wake up when he is low at night. ) I am not guessing that it will be covered or that it would be retroactive. But, I am still going to try. I believe that it can't hurt to start letting insurance people know about this life changing device.

Wondering about being in a study and pump 522/722

Jenny says:

Many people have asked me why Tommy is not part of a study. And the answer is that I did not find any studies to participate in. I asked at the University Hospital in Wisconsin and they said that there were not any there. (I think that is the most important, your endo has to be one that does research.) I asked our local Medtronics rep., and she said that it is up to the clinic and that there isn't really any motivation for the UW to do a study since it is already FDA approved and marketed. I also called Abbott to see if there were any opportunities to get on board for a Navigator trial, and there were not any trials in our area.

Well, we got our Guardian RT workbook today. Both my sons looked at it and examined the photos. They asked a few questions and then didn't give it another thought all day. ( Except there was a small discussion about how much Tommy would go for on e-bay once he was hooked up to his Guardian GT, his insulin pump, and had his braces on. ) :)

Our rep said that our product shipped. So it will be here soon.

Sandra Miller posted a comment on this blog on Feb. 1 about the next Medtronic Pump. It is going to utilize the Guardian RT technology, so that the pump and the monitor communicate with each other. She said that the new pump is already available in Canada. That news was a little alarming to us considering that we just spent money on the main component of the new pump. I called Medtronic and they said that the FDA slows things like that down in the U.S. I talked to my local Medtronic rep. and she said that the "522/722" insulin pump has been in front of the FDA since October, so she guessed that the earliest we would hear about it would be between October and January. That means that it wouldn't be marketed until January 2007 at the earliest. (I'm kind of hoping we will have a cure by then!! I know wishful thinking.) She also explained that when the new pump comes out, we will be using the same transmitter, so hopping on board with the Guardian RT now will not put us out any more money when it comes to buying the new pump in a few years. We may even be able to buy the software that enables Tommy's current pump to talk to the Guardian RT without having to purchase any additional hardware.

Training Protocol:

Jenny says:

I am Tommy's Mom, Jenny. I will submit postings to this blog also. I will be using this dark red font. We will pass on any feeback from the other members of our family.

I am also excited for Tommy to try the Guardian RT. I believe that it will be quite an adventure for all of us. The UPS man rang our doorbell yesterday, and Tommy bounded for the door. He was disappointed when the box said "Lands End".

It is hard to wait, but I got an e-mail from our local Medtronic Rep. that confirmed that we will probably be busy with leg work before we really even get the box. She passed along a likely training protocol:
Pre training (homework including the manual, the workbook and hands on with the product)
Training 2 1/2 hours
Call following day to MM rep to talk about any alarms
Call 2 days later to talk through first sensor change
3 days later send 1st download report to endocrinologist
Set appointment with endocrinologist for 2 weeks post start of Guardian
Use Guardian RT either continuous or periodic depending on goals/expectations

It is only our rep's second "hook up". Her first one she did for an adult yesterday. (That patient already called her today and told her that the Guardian RT woke her up on her first night with a low warning at 3 am. The patient did a finger check and verified that she was 58! She treated and went back to sleep!!!) Better Days are coming!!!!

Our Situation Update:
Tommy says (Jenny editted this one):

Here are some of my current diabetes accessories. My blue Medtronic Minimed 515 on the left and my BD Paradigm Link meter is on the right. The two of them talk to each other and give us tons of information.

I use the MM 515 all the time, except at basketball and cross country practice. It gives me Novolog insulin constantly. I have to change the site every three days. (I use Silhouette infusion sets. I numb the area , and then I insert the infusion set. My Mom takes care of filling the pump with new insulin.) I will probably be pumping until the cure because I like it much better than shots.

I use the BD Paradigm Link meters, I have two, to test my blood sugar 9-14 times a day. I test three times during school hours. My Mom, and sometimes my Dad, test my blood sugar 2-3 times in the middle of the night. After having diabetes for 10 months, my fingertips are getting pretty bad.

Sometimes I have lows that I don't feel, but I usually catch them because I test so often. I have never felt a low when I am sleeping, but my parents have caught them with their checks.

We have ordered the Medtronic Minimed Guardian RT to help manage my blood sugar. It will give me a blood sugar reading every 5 minutes. I will be able to scroll to find past readings and get an idea of how fast or slow I am going up or down. It alarms if I go too low and alarms if I go too high.

I will attach it somewhat like I do the insulin pump. The attachment is currently the part that I'm most concerned about. I might decide that I'd rather manage without it, but I want to give it a try. I currently only use my stomach for my pump.

At my last endocrinologist appointment, my Mom asked my doctor if we could try the Guardian RT. He thought about it for a few days and then sent the prescripiton in to Medtronic Minimed. We paid for it a few days ago, so I am expecting it next week sometime. (The Guardian RT is not covered by insurance, and not FDA approved for children yet because it is so new.)

My Mom and I would be happy to answer any questions. We are new to blogging, so any suggestions for our blog would be fine.