Death of a sensor

The topic of sensor life comes up fairly often in various diabetes-related Facebook groups. One question that comes up is how do you know when a sensor is done? Well, today I have no doubt my sensor is completely done. It was fine this morning...only 4 points off from my fingerstick. Within an hour or so, it was telling me I was 53⬇but I knew that wasn't right. I had just eaten breakfast. Fingerstick showed I was 157, which sounds about right considering what I had for breakfast, time, etc. I gave it a little time to straighten up, but after 4 hours it was still wonky (alternating between ??? and far off numbers) so I pulled it. It gave me 3 weeks of great readings and an abrupt ending. Can't complain too much about that! Here's hoping the new one is just as good.

Post-Thanksgiving Lows

We don't do Black Friday shopping, so today we slept in. I woke up at 8 to LOW on Dex. No alarm from Nightscout. Does it look like compression low? No. 

I rushed to his room. Didn't even wait to watch for breathing. Touched his arm. It was cold, so I rubbed it and he woke up. Huge sigh of relief. I looked at the receiver and the sensor had been stopped. Why did you stop the sensor? Shrug. Are you low? No. He pointed to the juice box trash beside the bed. Not sure how many are from last night.

I noticed the sensor sitting there. Why did you pull your sensor? Another shrug.

I waited for my heart to restart then slept a bit more while I had the chance. 

Trying Dex

I decided to try Dex for a week.  I was using an old transmitter and receiver, so the first few days of my data isn't stellar (lots of gaps).  Even though I was only getting sporadic readings, the data was fascinating  enough that I decided to leave it on for a few days.  Then, on day 4 it sprang to life.  Don't know how long it will keep giving consistent readings, but I'll try to keep it on as long as I can.

Here are some things I have observed:

1) I have spikes after meals.  They aren't as large and don't last as long, but they're there.

2) I really need my 2 pm snack.  I eat lunch at 11, so I have gotten into the habit of eating a snack after my last class leaves (2:08 to be exact).  I was afraid it was just a bad habit, but Dex revealed that my blood sugar is actually getting pretty low at that time of day.  That snack is not just a bad habit.  I need that snack to make it through the rest of the day!

3) Apparently I need a snack at 10 as well.  I wouldn't have known except Dex buzzed below 55.  It was only an hour before lunch, but ate a snack anyway because I was giving a test and didn't want Dex to alarm!

4) I've seen lots of women/parents of t1 girls talk about how their menstrual cycle affects their blood sugar.  I can confirm that it affected me as well. Higher for the first day or 2, then lower.  Lower than normal?  I have no clue.  Maybe I'll be able to leave it on long enough to figure out what "normal" is.

5) Wake up is not my lowest fasting blood sugar.  It actually goes down a little bit between the time I wake up and when I eat breakfast (an hour or so).

6) Mexican food caused a pretty long spike for me as well.  Not as high or as long as it does for Jason or Seth (and I assume all PWD), but it's there.

Jason had one interesting observation.  He came in the bathroom when I was showering and said, "That looks weird on you."  I know what he meant, but doesn't it look weird on everyone?  I mean, I love the security/information/help it gives, but having something like that attached to a human just isn't normal.

The thing that keeps coming up in my mind over and over is how if things affect ME this way, how much more they affect those without functioning beta cells.  It is absolutely fascinating.  Strange, I know, but I'm a science teacher so all this data is really intriguing.

Stay tuned....if I get any more earth-shattering revelations I'll be sure to share!  I've had several requests of things to try out, and as long as I'm getting data I plan to try all the things I can.

24 hour graph.  It's not a flat line, and you can clearly see the Mexican food!

Show Me Your Pump

Most of the time, Seth and Jason don't care about their Dexcom sensor showing.  In the summer, they both work as lifeguards (Jason is a pool manager in the summer) so their sensor is pretty much always showing.  The questions are pretty much nonstop at the pool, people asking what it is.  Neither of them really mind telling people what it is, otherwise they would wear it under their swimsuit somewhere.  But they do sometimes get tired of answering the same question over and over.  Depending on who asks and how, the answer may be humorous. (I always make them answer sincere questions with the real answer.  Buzzkill, I know.)

Enter Miss Idaho Sierra Sandison.  She wore her insulin pump ON STAGE during the SWIMSUIT portion of the competition.  Well, she actually wore it during the entire thing, but the swimsuit competition was the only time it was really visible.  In a place where appearance is pretty much everything, this brave young lady wore a visible medical device.  Wow!  I am just blown away by her bravery.  She also started a hashtag on social media, #showmeyourpump.  It's kinda gone crazy, with people posting pictures not only of their pumps, but also of other medical devices.  She is empowering people!  How cool is that???

Anyway, back to my guys.  Their reach is nowhere near that of Miss Idaho, but I have no doubt they are influencing someone with their openness.  Medical devices of all kinds are not easy to wear, and even less easy to wear in the open.  But these devices are what make a more normal life possible. It takes brave people that aren't afraid to show those devices to make them more visible/acceptable to the public.  Brave public figures like Sierra Sandison, and all the regular people that just wear their devices in everyday life like Jason and Seth.

Closing the Loop

These has been lots of talk recently about the closed-loop (artificial and bionic pancreas) trials.  Many of my awesome friends have asked me about it, posted about it, etc.  It is a very exciting development that I have been following for a while.  I do have some concerns, things that will need to be addressed before it becomes available to all type 1s. 

First, the artificial and bionic pancreas both require 3 sites on the body.  2 pump sites, similar to the one shown in the first picture, and 1 CGM (Dexcom) sensor, like the second picture.

 

Having even one thing attached to the body can be a hassle, much less 3.  The pump sites will both be attached to plastic tubing.  Each one is attached to a separate pump. One pump delivers insulin, the other delivers glucagon. Pump sites can cause scar tissue.  Areas with scar tissue can no longer be used, at least not for a period of time to see if they heal. This is especially a concern for children, who have much less surface area for inserting all these devices. All 3 devices are connected to a smartphone that basically controls the insulin and glucagon delivery.

Another issue is that glucagon is not a stable solution.  At the present time, it must be replaced daily in the glucagon pump.  That would be a huge expense in regular use.  Researchers are working on stable forms of glucagon, so hopefully this issue will be solved soon.

At present, CGM (Dexcom) technology is not advanced enough to make dosing decisions.  We use Dexcom as a tool to view trends, but never inject insulin based on the number Dex gives.  A fingerstick test on a blood glucose meter is needed to confirm.  In closed-loop systems, the number from Dex is used for the system to make the decision.  A more accurate Dexcom is currently being worked on, from what I understand.  Until Dex is reliable enough for dosing insulin it really can't be used outside of clinical trials.

Insurance companies are also putting language into their policies to specifically exclude closed-loop systems.  Without insurance coverage, most people will not be able to afford the systems when they do become available.  Some companies do not cover pumps and CGMs, either. There are still many people that do not have the option to use the current technology, much less what is on the horizon.

One important thing to keep in mind...the closed-loop systems are in trials right now.  They have not been approved yet.  The people that are doing the trials are amazing.  They are volunteering their bodies to advance the technologies that will hopefully improve the lives of all those with type 1 diabetes.  Heros in my book, especially the children that have just recently been approved for these trials. Heros like Elise, who just started the bionic pancreas trial.  At 6, she is the youngest person to trial a closed-loop system.  

Don't misunderstand me. These clinical trials are hugely important. This will be life-changing for people with type 1 diabetes.  We're just not quite as far along as I think the media sometimes implies.  There are still some big obstacles to overcome before we get there. I am so thankful for the people that are working tirelessly to make this happen.  We'll have an even better tool to KDA. Until there's a cure.

Sugar Surfing with Dr. Ponder

Last Saturday, we attended a Sugar Surfing seminar with Dr. Ponder.  It was wonderful!  So many things to learn!  I tried to take notes, but there was so much information.  I can't wait for his book to come out so that I'll have the information in front of me at all times.

Big things we learned:

1) Sugar surfing is Dynamic Diabetes Management (DDM).  It isn't a set of rules, it's a way of thinking and  responding to individual situations.
2) Diabetes care MUST be individualized.  One size does NOT fit all.
3) Even non-diabetics do not have a straight-line CGM graph.
4) Start small.  It takes years of practice and patience.
5) Control exists "in the moment."

He explained new vocabulary (flux, drift, nudge, shove, turning a curve, taking the drop) all related to watching your graph and responding appropriately.  You can learn to pre-empt a spike or a drop if you are paying attention.

Micobolusing and microcarbing were 2 techniques he talked about for making small changes based on what the graph is telling you (and of course confirming numbers with a fingerstick before making a correction).

He also talked about finding the balance between alarm fatigue and infomation/BG awareness, in reference to setting high and low alerts on your CGM.  I thought this was important.  Sometimes I think my guys have their high alert set too high, but hearing the high alert stresses them. They have it set to a level where they will take action, not the top of their desired range.  That range can be changed over time as they become better sugar surfers.

After it was over, I asked the guys what they thought.

Seth said, "What he said made a lot of sense.  I do some of those things already."

Jason said, "I'll try it!"

So, I think it was a great way to spend a Saturday morning.  I highly recommend Sugar Surfing, if you have the opportunity to attend!  It's another way to help us KDA!

Isn't this what we wish it could always look like?

Wifi hotspot?

Seth has convinced some kids at school that his Dexcom transmitter is a mobile hotspot. He even named the hotspot on his phone DexcomG4##### (seriel number). Here's how the conversation went down, paraphrased.

Kid: What's that? (Pointing at transmitter.)
Seth: My mobile hotspot.
Kid: No way!
Seth: (Shows receiver) This is the controller. Search for Wifi on your phone and you'll find it.
Kid: OMG, there it is! Where did you get it??
Seth: My mom got it for me. My dad has one too.

How hilarious is my kid???

He wears his Dex sensor proudly!

DI Competition

A couple of weeks ago, Seth competed in Destination Imagination (DI).  It was his 8th time to compete; he started in 5th grade.  4 of the team members have been together since 6th grade (7 years). They are an amazing group of teenagers!  They are going to do awesome things in our world. 

Here's a glimpse into the world of DI.  The kids do EVERYTHING, including writing the script, designing and making the costumes and props, creating a soundtrack, and performing.  Everything!  There is an adult manager there just so they aren't unsupervised.

Shopping for costume ideas.  Seth got a little bored and started stacking golf pencils.

Final night of practice before the big competition.
Seth loves the tricycle for some reason.
 I think I have a picture of him on it every year.

This year's competition involved choosing a work of art, then centering the entire performance around it.  I had seen the work of art prior to the competition, but didn't know what all was going on with it.  DI is kinda like fight club.  The kids don't talk about it outside of DI.  The only thing I really knew was that Seth needed brown shoes for his costume.

The artwork inspiration for this year's performance.

The kids do ALL of the costume prep.
 If you'll look closely on the back of his arm, you can see a little bump that is his Dexcom sensor.

The  competition consists of 2 parts - a performance and an Instant Challenge.  I don't know much about Instant Challenge (think fight club again), but I know they have a problem to solve in a set time with limited supplies.  This is the hardest part of the competition for Seth's team.  Spectators are not allowed for the IC, but are allowed for the performance.

The performance was fantastic! The appraisers (judges) had awesome things to say about their performance. The engaged and delighted the audience from beginning to end.  There was humor.  The team used their musical talents as part of the performance.  It was just wonderful, beginning to end.

Team picture with their manager after the performance.  They nailed it!

There is a big awards show at the end of the day.  The scores from performance and IC are totaled and medals are given for each category.  Seth's team placed 3rd in their category overall.  BUT, they earned a DaVinci award.  DaVinci awards are given for excellence in their performance.  The appraiser's sheet for the DaVinci award had nothing but great things to say about their performance. This is only the 2nd DaVinci award ever earned by a team from Seth's school.  The first one was earned by this same team 2 years ago!  Like I said, they are an amazing group of kids!

At the awards ceremony with their DaVinci award.

Diabetes did not play into the day much at all.  Other than his Dex sensor showing and having to do an injection in the hall for his lunch, it was not much of a factor.  Seth tamed the D-beast like a boss.  He watched his Dex trend graph and took appropriate actions throughout the day.  I just wanted to share his amazing accomplishment.  With diabetes along the path is a little trickier, but with careful management he has been able to continue doing all of the same activities he did before d. Not only does he do them, he ROCKS them. KDA every day.

Do I do too much?

A comment on another blog recently made me wonder if I do too much for my guys.  After all, they are both capable of doing all of their own care.  I know little kids need much more hands-on care, but do my guys need the things I do for them?

Here are the things that I CHOOSE to do to help them out, and hopefully avoid diabetes burnout:

1) Ordering and organizing supplies. I am almost obsessive about this.  I order as soon as I can and have quite a stockpile of most things.  Just in case.  And I have everything in labeled drawers.

2) Calculating carbs. I weigh, measure, look up, SWAG, etc.  Seth has dubbed me the SWAG master overlord.  I take it as a compliment. I also have the carb info for every restaurant we visit on my phone. I make a post-it note for endless tacos/enchiladas. My mom calculates all the holiday meals.

3) Inserting Dexcom sensors. I do this for 2 reasons.....because they don't want to, and because they prefer them on the backs of their arms. Pretty difficult to get both hands behind your arm.

4) Night checks as needed.  I'll set an alarm if a problem is suspected, but mostly we just rely on Dex to alert us.

5) Looking for patterns and helping with dosing decisions. Seth needs more help with this.  Instead of doing it FOR him, we do it together.

6) Checking their d bags and making sure they are ready to go on the next venture outside the house. I empty trash, check insulin pens, pen needles, test strips, low supplies.

7) Research, research, research.  I try to learn everything I can to help them.

My conclusion?  Absolutely I should be doing these things for them!  Type 1 diabetes is a 24-7-365 disease.  They are the ones that poke themselves multiple times a day, wear Dexcoms on their bodies to help stay safe, feel the effects of their blood sugar going up or down. It can't consume our lives, but it does have to be considered at all times. Life with diabetes is NOT normal, but D-parents do everything we can to help it be as normal as possible.  So our kids can be kids.

And to the person who commented on the other blog:  Yes, type 1 diabetes is a big deal.  Yes, it can and does kill.  And no, we don't need to relax.  As soon as you drop your guard, that's when d attacks.  Not that I will let it consume us, but we must always be mindful, always be on guard.

Diaversary #2

I started this over 2 weeks ago, but just couldn't finish it because of final exams at school, Christmas, life, etc.  Diaversary #2 was Dec. 14.

For the 2nd time in less than 4 months,  we are "celebrating" the day of diagnosis with type 1 diabetes.  We aren't celebrating the diagnosis,  but rather the fact that my awesome husband has KDA for a year. Now, if you are a regular reader, you will remember that Jason was diagnosed as a type 2 several years ago, but never had any semblance of control.  A1C numbers were always too high, doctors were always telling him to "do better, get more exercise," etc.  After Seth was diagnosed with type 1, I found information that led me to believe Jason was misdiagnosed.  His doctor agreed, and we ventured into the land of 2 type 1 diabetics in the house.  In that year, his A1C has been cut almost in HALF!!

It has been a tough year, but a good one.  Father and son have been a great support for each other. They remind/encourage each other to test.  They have little "contests" to see who is closer to 100, or who is closer to their Dex number.  They understand each other like no one else in the family can.  I hate they have that bond, but I'm glad at the same time.  Does that make any sense at all??

Pre-bolus backfire

Diabetes doesn't like to play by the rules. Even when you do everything right, it doesn't always work the way you think it should.  This weekend was a perfect example of this. 

Friday night, I made a soup that has pasta in it. Typically for my guys,  pasta needs insulin after eating.  This time, however, injecting after he finished eating resulted in double arrows up on Dexcom for Jason. He didn't go super high, just higher than he likes and got there pretty fast. He was back down in range by bedtime, so everything was ok.

Saturday for lunch, we had leftovers of the soup. Since the timing was off Friday night, both guys decided to inject 15-20 minutes before they ate, which they try to do with most meals. We were guessing there wasn't enough fat in the soup to cause a delayed rise in blood sugar like most pasta. So they tested (both around 110), calculated their carbs, injected, and waited about 15 minutes to eat. Halfway through lunch, Jason's Dexcom started buzzing low, and falling. Seth had just pulled his sensor that morning and was waiting until after lunch for a new one, but he said he felt low too. It wasn't long before they were both shaking and sweating.  I sat there not knowing what to do because THEY WERE EATING!!  How the heck do you go low WHILE you're eating?? And since when do both of them have the same reaction to the same meal??

Sorry for the poor quality.  Dexcom receivers are hard to photograph!
This is from a different low...I was way too flustered to take a pic during that fiasco!

As I was contemplating what to do (quick carbs?  Glucagon?), I noticed I was shaking and a little sweaty myself. It only took a few minutes for them to start feeling better as the carbs from their lunch kicked in, but those few minutes seemed like a eternity to me. It may be a while before we have that soup again, but next time we'll try something different. Inject right before eating,  maybe? It's just trial and error, really. But eating shouldn't be that hard, and the error is just unacceptable.  We are learning every day, but there is so much left to learn for us to KDA.

Making Lemonade

I am a glass half-full/silver lining/making lemonade kind of girl. It has been incredibly hard for me to find the positives since Seth's diagnosis.  The DOC (diabetes online community) is an incredible positive. Someone is always there to answer questions,  give support,  or just listen. I participate in the DOC in several ways: blogging (reading and writing), Twitter,  a couple of Facebook groups, and my favorite type1parents.org. The support, advice, information, etc has been vital to my survival this past year but I still struggle to make lemonade out of the stupid diabetes lemons.

Grasping at straws, I know, but here's a little bit of lemonade: Seth has had a positive impact on 3, yes 3, adult type 1 men.

1) I've written about Jason's diagnosis before here and here. The information I learned after Seth's diagnosis quite possibly saved his life.

2) Seth has a friend whose dad is type 1. He was diagnosed around 12, I'm thinking. He has never really taken great care of his diabetes, much to his wife's dismay. In fact, he has been using pretty much the same insulin regimen for much of the last 30 years. After Seth's diagnosis,  he updated his diabetes management,  moving to more modern insulin theray. AND, he recently started pumping.  He feels better, and I know how happy his wife must be. His son has told me several times how happy he is to see his dad taking better care of himself.

3) Jason has a friend that was diagnosed with type 1 in college.  He was one of the first people to visit Seth in the hospital. I don't know him well, but that meant so much to me. By his own admission,  he is a bad diabetic.  He doesn't test often, only when he feels bad. He knows his blood sugar numbers are high most of the time, but hasn't really worked to change it. After I posted on Facebook about Jason and Seth getting their Dexcom G4 systems, this friend called Jason to ask him about it, ordered it the next day, and started using it a couple of days ago. He wants to improve his management!

I hate type 1 diabetes every day, but seeing some positive things happening helps me deal with it just a little bit better. I cling to the hope that every day is one day closer to a cure!

They have names!

The guys have named their new Dexcom systems.

Seth named his Eddie. He likes it when Eddie matches the meter. 

Jason named his Little Steve. He also likes it when Little Steve matches the meter.

Sometimes Little Steve and Eddie match each other. We all think that's cool.

So far, with the exception of the first 24 hours of a new sensor, we are all in love with Eddie and Little Steve. They are already helping us manage the beast that is type 1 diabetes.

Meet the Cyborgs

We have 2 new members of the family. They haven't earned their names yet, but I'm sure they will very soon.

They were delivered on Tuesday.

Seth was super excited!

Jason was a little unsure.

Different colors so we can keep them straight.

This is the sensor with the inserter. Looks kinda wicked.

Jason's sensor/transmitter. 

Seth did his own insertion.  He is a rock star!!!

First 24 hour graphs. J on top, S on bottom.

The 2nd day. Jason fixed his breakfast spike!

After 5 days with the Dexcom G4 systems, I can say life is already better. I can't honestly say I'm sleeping more, but I'm sleeping better. When I wake up at night, I check both receivers then go right back to sleep if we have steady arrows. Friday night, both of them rode just above the low line all night.  Before Dex, I'd have woken them up for snacks. Since I could see they were holding steady, I was able to sleep. 

Life with type 1 diabetes is hard, but Dexcom makes it just a little bit more manageable.