This is water

We had lots planned for the 4th of July 2012, Cole's baseball game was at 10am, Arden didn't want to miss a 1 pm parade that we go to every year in the next state over and we were joining our family for a picnic and swimming at my in laws. Since the parade is about 35 minutes from our house (and in the same town Kelly's parents reside) Kelly and Arden left the baseball field as soon as Cole's game ended (they won) and I stayed behind with Cole so that he could hang out with his team for a while and then get changed before we left for the picnic.

Cole and I arrived at my in laws' home long enough after the parade had ended that everyone was swimming when we arrived. We walked into the house and made our way to the sliding glass door that leads to the pool. I paused for a moment to speak with someone, during our very brief conversation a gust of wind lifted one of the tall tables next to the pool. The gust, which came literally out of the clear blue, filled the orange umbrella of the table closest to where I stood, lifting it off of the ground. Without hesitation the table and it's contents clumsily tumbled into the pool. I was shocked by the site but not overly concerned as I saw that no one was in it's path either on the sidewalk or in the pool as it fell. At first glance this all seemed like no more then an annoying situation that would need to be cleaned up. Watching all of this through the glass door gave me the sensation of watching television with the sound muted. In an instant Kelly came from stage left entering my field of vision in a full sprint, she didn't slow down as she approached the pool and jumped in with an urgency that caused me to think that someone was pushed in by the heavy glass table. I began to move outside to help when Kelly held up her right hand over her head, she was clutching Arden's D-supply bag. The bag that we keep her OmniPod PDM in. My stomach turned. When I approached the scene, Kelly was handing Arden's PDM to my sister in law, followed by her DexCom CGM, Kelly's Backberry from work and her personal iPhone.

I immediately asked Kelly when Arden's last bolus happened and what her BG was at the time. We were managing Arden's BG completely blind now and without the ability to test, bolus, or suspend basal. Our conversation indicated that Arden's BG was in a good place so instead of ripping her from the picnic to make the trip back to our house, I left to bring new supplies to her. An hour and perhaps twenty or so broken traffic laws later I was back. I switched Arden to a new pod that I'd have to link to an old OmniPod PDM (b&w screen), tested and began monitoring her diabetes 'old school' without the assistance of her DexCom CGM. It was back to timers and worrying between insulin and food. Not good but we'll be fine, the reason I tell you this story isn't because of the drama or shocking nature of loosing so much important and expensive equipment. I tell it because of the book that was on my back seat as I made the desperate drive to and from my house.

During the mad dash to retrieve all of our backup supplies I couldn't help but to think about the book on my back seat. I had a copy of David Foster Wallace's 2005 commencement speech with me because I was going to give it as a gift to a recent graduate later in the day. 'This is Water' is a book that I give to every graduate in my life. It's not really a book actually, but the text of the speech in gift book form. I try to reread the text at least once a year because it's message about choosing how to think about reality is so close to how I try to think about my own life. Wallace makes a compelling argument that every situation can be reacted to in the direction of your choosing. He uses the example of a speeding car and asks you to imagine that the driver may be speeding because their child's life is in the balance. He admits that in most cases the offending driver is probably not in a dire situation but then asks, what if "the Hummer that just cut me off is maybe being driven by a father whose little child is hurt or sick...".

As I sped to my house I had two thoughts. One, the idea that Arden's bolus might drag her BG too low while I was gone and two that I was living a part of Wallace's commencement speech and playing both roles. I was the father driving like a nut and I was the man who choose not to judge him...

Watching two thousand dollars worth of electronics being pulled from a pool was nauseating and it was truly going to cause my family a financial hardship but I never thought about the money. I did my best to keep Arden's health and safety as my only thought or concern. As I took the steps necessary to make that happen I found myself doing what Wallace suggests is possible. I looked at the world, at this situation, in the way that let's me be happy. I remained aware "of what is so real and essential, so hidden in plain sight all around us, that we have to keep reminding ourselves over and over: this is water... this is water". I hope that you take the time to find Wallace's words, they are available in book form, online and the audio of his speech is on YouTube, I've included it below.

Diabetes gives us all plenty of opportunities to see the bad in life and in all fairness and devoid of any new age bullshit, a lot of it really does suck. I just hope that you can trust me when I say that you can choose to not think of it that way, it's difficult but really worth the effort. I've witnessed people like myself who from time to time struggle greatly with the difficult moments that diabetes can present. These moments offer us the very real and easy opportunity to not just see the bad but to lay down in it and make ourselves at home. It's easy for me to say that you should resist that urge but because I know from my own life that choosing to be happy is not the simple task that just saying the phrase suggests... Consider checking out 'This is Water', it helped me to find the right path and I hope it helps you as well.

July fourth 2012 started out in fine form and then quickly deteriorated into a day we'd rather forget. I originally thought that this story was going to end with the image of our gadgets in a bag of rice but diabetes had more in store for us then I imagined. Too much for one blog post, so I'm going to have to wait until my next writing to tell the story of July 5th.

part1

part2

Bring Your Child to Work Day 2012

My wife's company, Novartis, does an amazing job every year with Bring Your Child to Work Day, they put a lot of resources and manpower into creating an informative and fun day for the kids. This year the focus was on how products are imagined, marketed, and brought to a store near you. People from all different parts of the company spoke to the children and explained what their department did and why it was important to the process. After each "talk" the kids performed different tasks with the goal of producing a cookie that they could sell at the end of the day.

All of the proceeds from the cookie sales are being donated to our JDRF chapter so the last talk of the day was from me and Arden. We explained the difference between type I and type 2 diabetes, gave an overview of the JDRF and had a hands-on look at Arden's OmniPod insulin pump and her DexCom CGM. Insulet was kind enough to send me some non working or dummy OmniPods so that the kids could try them on if they wanted to.

The day was a wonderful success raising $1,100 for the JDRF, an amount that will be matched by Novartis 100% for a grand total of $2,200! 

One of the best parts of the day was watching the kids work so hard on their cookie ideas, boxes and then seeing the hustle they all showed selling the cookies. It was while they were selling that I began to really notice all of the OmniPods on their arms and I have to admit that it was a very warming experience to see the children so enthusiastic and excepting of it. If I had enough pods I think every kid in the room would have been wearing one.

Arden and her team sold chocolate chip cookies and their marketing hook was that they had a celebrity endorsement, if you look closely at the boxes you'll see, "Arden's Favorite Cookies" on the sides.

Big thanks to Novartis, my lovely wife Kelly for suggesting that the JDRF would be a great place to send the funds collected and Insulet for sending the pods for the kids to wear. 

I explained to the children that advocacy and awareness is what people with type I need the most from them and that I hoped they would tell someone about the good work that they did. I was very proud of all of them for the attention, effort and concern that they displayed throughout the day... it was a great experiance for everyone!

America's Got Talent but no phones

Follow Arden's Day on Instagram @ardensday

Even before type I diabetes we didn't go out very often without our kids. Since type I, well, we do it less. That fact takes it's toll on a lot of aspects of our lives. Please don't misunderstand, we love having Cole and Arden with us but sometimes a person needs a break. Yesterday was our break. Kelly and I went to New York to see an 'America's Got Talent' taping. Kelly is a big fan of the show and I was very interested to get a sneak peak at how Howard Stern would be as a judge. The tickets said that the taping would run from noon to four or five. Arden doesn't get home from school until four. We needed a babysitter...

We only have two D-babysitters...

They were both busy...

We talked about not going.

I was really motivated to find a sitter because Kelly has been working so hard for so long and I really wanted to see her get this break. I did something next that I've never done before, I dropped D-proficient from my babysitter qualification list deciding that I could manage the diabetes on my own remotely if the person on the other end of the phone was focused, confident and understood the gravity of the situation. We have a lot of good friends and know many people that fit that description. Jen answered the call and our plans were back on.

The directions from 'America's Got Talent' said no phones would be allowed in the theater. I (hopefully) thought that they were just trying to persuade folks to leave their phones at home. Within moments of arriving at the Hammerstein Ballroom I heard the first production assistant announce that, "cameras and phones will be checked... no one will be allowed to bring a camera or phone into the taping". I completely understand that they don't want videos popping up on YouTube but I didn't have any designs on such things, I just needed to be able to text with our babysitter. "What to do now" was the question that I asked myself as we stood in line. If I ask politely, they may say no and then I'm cooked... I'd have to summon up my inner teenager, luckily he hasn't gone too far. So for the next hour or so I stood in that line with my iPhone jammed into the side of my left shoe.

I was almost home free when I realized that there may be a metal detector inside. My fear was soon realized as our friends went through the door, Paul turned around and mouthed to me, "wand", they were using a hand-held metal detector, I was about to get caught. Just as I was practicing my speech that was meant to let me keep my phone, the security guard put his arm out and stopped Kelly and I. "Hold on", he said and then directed us to the secondary entrance... the entrance with no wand!

The taping was great fun and I think that anyone who watches 'America's Got Talent' and only knows Howard Stern by reputation will be very happy with how he judges the show. We had a great time and much to our pleasure, never needed my phone. The taping ended exactly five minutes before Arden would get off her bus. I was able to manage her diabetes by phone and text without issue as we drove home. Our sitter (Thanks Jen!) said that Arden seemed very confident with her OmniPod PDM and that our son Cole was extremely helpful as well. 

I think that yesterday was the beginning of the next step for us... More and more of Arden's management will be transferring to her in the coming years. It's an exciting and slightly nervous feeling, but a very good one.

Basal the spike away

Standard Disclaimer: I'm not a doctor, please read the disclaimer at the bottom of the page. Always speak to your doctor, especially before trying something that came to me while I was in the shower. 

Stubborn Highs: Arden's blood glucose can rise and at times be resistant to returning to 'normal'. Happens to all of us. I bolus and wait but nothing, so I bolus again and sometimes again. It's around the second bolus when I begin to wonder, "is the site bad", "maybe the pump has been on too long", "did I grossly miscalculate carbs", a person can go batty trying to decide what has happened. It's likely that before you (or I) can ever come to a conclusion, the BG in question will return to 'normal' or head in the complete opposite direction. Either way, the whole unsightly mess is forgotten becasue you're busy chasing the next problem which leaves you no closer to understanding why this happened or figuring out how to avoid it next time.

Sound familiar? 

This type of BG struggle isn't just associated with stubborn highs: Breakfast or meal time spikes can also lead to an urge to bang your head on a nearby firm surface. Over the last few months I've been experimenting with an idea that came to me in the shower one day and I'm seeing a lot of positive results. I'm going to do my best to explain without being boring or confusing... Please note that what follows will only work for pumpers because it involves manipulating basal rates... sorry MDI and pen users!

Using increased temp basal rates in place of a portion of your bolus

Arden is a really good eater, that is that she eats healthy foods most of the time and in acceptable portions. If the kid has one 'vice' it's that she likes a bowl of Fruit Loops in the morning - just one cup. The BG devastation that this handful of cereal visits unto Arden was, in the past,  terrible. Her BG would rocket to 400 or more after a bowel of the colorful rings. The Loops would seem to laugh in the face of a pre bolus and administering more insulin before the meal or an extra bolus after could not penetrate their sugarific force field. Once I even thought that I saw Toucan Sam give me the finger as I put the cereal box back in the pantry.

I hate this song and dance. I hate that Arden can't have a flippin' bowl of cereal once and a while and I double hate the feeling that I live with when she eats cereal and her BG goes crazy. Foods like this don't just send her BG too high, they ruin most of the rest of her day. I'm full aware that cereal isn't a good choice for my diabetic daughter but I'm not writing about that today. Today I am talking about how, with the help of an insulin pump, we can all fight meal time spikes associated with not so great food choices and manipulate stubborn high blood glucose values more easily and smoothly.

My formula

Things you need to know to follow along: 

• Arden's basal rate is .30 in the morning and much of the day.
• For a serving of Fruit Loops she requires 2 units of insulin.
• Giving say 2.5 units for the cereal does not change the trajectory of her BG.
• If I go higher (say 3 units) the spike is not effected enough, topping out at 350 and Arden's BG will plummet between the three and four hour mark.

Time to visit me in the shower where I am apparently about 20 IQ points smarter then I am anywhere else. (I've heard that the hot water on the back of your neck may be the reason why).

I was in the shower one day pondering life and Arden's breakfast BG spikes when I first began putting the pieces together. Overnight Arden's basal rate is .20, if she's high I have to put her basal back to .30 for a bolus to have the desired effect... I wondered what would happen "if I increased the basal beyond .30", could I bring a high BG down in a safer way, steadier perhaps (because she's sleeping) then if I just bolused? I tested my idea at the next opportunity and not only did a significant temp basal bring down the high overnight BG but it did it with less insulin then a bolus would have required and the drop was smoother, it's 'landing' less erratic. My inner mad scientist was intrigued and I had just unknowingly found a big piece to the puzzle that is stopping mealtime spikes.

Proof of concept: Arden sits down and begins eating on a school day at 8:20 am. Today at 7:45 am her bg was 140, I bolused for the first 15 carbs of her upcoming breakfast, which was 1 unit or half of what a serving of Fruit Loops requires. This is a pre-pre bolus, I find that after a long night of no boluses and a decreased basal rate it can take a little longer for insulin to begin working (maybe this is part of the morning insulin resistance many experience?). At 8:10 am I bolused again this time for the remaining 15 carbs but I reduced the 1 unit of insulin by .30 (the equivalent of an hour of Arden's basal rate). Last, I increased her basal by 95% for one hour. (OmniPod won't do 100%), giving the last .30 of the 2 units via an increased basal rate. The temp basal in conjunction with a significant pre bolus seems to be the key to eliminating a BG spike. Pre bolusing alone won't effect a severe spike enough because you can't perfectly sync the insulin peak with the food spike so the BG rises quickly, drops suddenly and often bounces back up. However, when you add a pre bolus to a significant temp basal, the basal acts as a constant drag on the spike and the two together win out.

Breakdown

15 carbs or 1 unit, 40 minutes before breakfast - 7:45am

I can prebolus that far off in this situation without an issue because her basal was .20 all night and she's resistant in the AM, so the insulin is a bit slower to respond first thing in the morning. Plus, with Apidra, Arden rarely experiences significant BG falls so prebolusing this far out feels safe. Additionally, I have 70 points in her BG to play with and the cereal will be releasing sugar into her blood far before she gets too low... (having a DexCom CGM doesn't hurt either).

Another 15 carbs 15 minutes before the meal (withholding the equivalent of an hour's worth of basal)- 8:10

This insulin won't begin working until after Arden begins to eat, so I'm not worried about stacking. Two boluses also mean two insulin peaks while the Fruit Loops are trying to spike her BG. 

Double the basal rate for an hour to complete second 15 carb bolus.

This .30 will work better then if it was given as part of the bolus, why? I don't know, I told you, I'm not a doctor... it just does - Maybe I know this because hot water in the shower makes me smarter. btw, more then an hour of the temp basal is too much and results in a fall in the 3-4 hour range. Doubling for an hour is perfect.

Result: At 9:30 am Arden's nurse called... Arden was 240 by her CGM. The CGM indicated 2 arrows up (which was why she was with the nurse) but the double arrows only lasted for about 4 minutes. So my little science experiment took a double arrow up event that in the past would have sky-rocketed to 400 (or more) and held it to a 4 minute double arrow that never went above 250!

Arden's BG (by the CGM) at 11 am (pre recess) was 145 diagonal down, she drank 2 ounces of juice (7 carbs) and went outside to play. When she returned her BG at 11:30 am (post recess, pre lunch) was 129 by a finger stick, 140 and steady via the CGM. 

I choose and extended bolus for lunch because she was having a bagel. 60% of the 2.20 units at 11:30 am the balance over an hour (to combat the slow breakdown of the bagel). Her BG was 145 three hours later before snack time.

Summation

It goes without saying that what works for Arden won't work for everyone but after months of using this method I am 100% comfortable telling you that what I wrote here is well worth speaking to your endo about. The concept of using a temp basal to complete a bolus holds many possibilities beyond what I wrote about here today. Slow to break down foods and high carb meals for example are also good places to try this method. I'm using a temp basal as part of Arden's bolus on almost a daily basis. It is also invaluable in bringing down stubborn high BGs and getting a BG lower during sleep, avoiding the fear of a sudden drop and without going too low.

I wish you all good health, luck and steady BGs. I'll do my best to answer any question if you have them.

Switching from MDI to an insulin pump

This post is in response to the question that Melissa posed on 'Ask Me Anything'.

Hi Scott,

I was wondering how you felt when you got Arden's pump. Alison has been doing MDI since July 2010 and we just got her first pump yesterday.

I have to admit that I was really excited when the girls and I opened the box up. The little ones were excited to see the unit power up and hear the sounds it made and it was a really positive experience.

Once both girls were asleep in their beds, I took another quick look in the box. I was overcome with tears. I felt this enormous weight and sadness, almost like I did when we were coming to grips with Alison's diagnosis.

Just thought maybe others could share how they felt (excited, nervous, sad) about the changes in their child's lives. - Melissa

To answer your question simply... I was nervous beyond compare when we made the move to pumping. In my opinion switching brings up a lot of those old diagnosis feelings becasue it again challenges you to learn something foreign and learn it quick. That should be the definition of pressure, "figure this out or here's the list of bad things that'll happen to your child".

The long answer is this... In a few days we'll be celebrating Arden's third anniversary with her OmniPod insulin pump. I can remember getting more and more nervous as her pump start appointment approached. On the way home from the endo's office that day we stopped for lunch and I thought that I was going to cry right at the restaurant table. Switching from MDI to a pump instantly reduced me from a seasoned type I parent to a rookie. In that moment everything felt new and I was confusing myself with every move that I made. Basal, bolus, cannula... why did they have to rename stuff? What was wrong with long acting and short?

I just about fell apart... Then I looked over at Arden and she didn't care that everything was new. She was beaming, thrilled that the shots had ended... that's all she knew or cared about. I figured that if she could do it then so could I. So I took a deep breath and thought to myself, "bolus is the shot, basal is the long acting insulin, this is going to help her... lower A1c, no more shots... bolus is the shot - I can do this." A week later I felt like a pro again (I wasn't but at least I wasn't scared).

Melissa, I've been overwhelmed by a great many diabetes related moments. My best advice is that we have to go through these things so we can become the people that our children need. The first few years and the changes that come with them are our diabetes education. No one is going to be able to fully explain this disease to anyone else, we all have to live it to learn it, we have to suffer with it to master it.

One night as I was putting Arden to bed she asked me, "what am I going to do when I go to college", referring to overnight management. Poor kid, she's seven years old and she is concerned that she won't be able to be safe ten years from now. After I explained that by then she'd have a system just like mine, I went into the next room and cried. The trick is that I left my sadness in that room when I was finished. I choose to let those moments strengthen me. I considered them a hurdle crossed instead of another chink in my armor. I may be fooling myself but if I am... it's working.

Living this life demands that we get scared and even cry sometimes but always push on...

Congratulations on moving your little girl to insulin pumping, I hope and expect that it will be a wonderful addition to both of your lives! I know that my stress decreased significantly when the OmniPod came into our lives.

If anyone would like to share how changes in their child's care has affected them, please post your remarks after Melissa's at this link.

Great thanks to Melissa for sharing!