It’s The Difference Between a Flip Phone and a Smartphone

Hey there.

I’m still here in the bathtub.

Sorry – elementary school teacher in me sneaking out referencing a children’s book of poems.

I can’t remember the last time I wrote, and I’m too lazy to click back on archived posts – Im guessing the last post would be archived since it’s defiantly been a long time.

I could give you a list of reasons why I’ve been absent but it would bore you, so lets just pretend I’ve been in a drunken stuper for how ever long it has been. I haven’t of course. I really don’t drink. In fact, I was recently chatting via text with another Dmom about how I should drink, and I wondered aloud (can you wonder aloud via text?) fuck it anyway, I wondered why I didn’t drink and she was able to remind me, because as a parent of a child with diabetes Dmoms or dads, need to be on 24/7. That made me think of the last time I had more than 2 adult beverages. I knew of course. It was December 2010. I had hosted a BUNCO party at my home in Texas. Thirty of my closest friends or women with no better plans were at my house. I had consumed copious amounts of red wine. I remember checking my youngest sons blood sugar before going to bed, technically before vomiting a few times and then going to bed. I know I set an alarm for 3am to check my youngest again, but I didn’t get up and I didn’t ask my husband to get up either. I don’t remember much of the evening after the party. The next morning when I checked my son his blood sugar was 32. For anyone not in the diabetes know – that is exceptionally low and dangerous. That was the last time I consumed more than 2 adult beverages in one evening and even that is a rare occasion.

I digress – this post isn’t about adult beverages or the dangers of caring for children when under the influence. I honestly don’t get what is fun about being intoxicated. I’m a bit of a control freak so the thought of not being in control kinda makes my skin crawl.

Still more digression – this post is about insulin pumps. Or it will be if I ever shut up about alcohol.

My oldest started using the Tandem T:Slim insulin pump in December 2013. It is a sexy pump. I mean if pumps could be considered sexy.

The other night my daughter inadvertently let her pump (Dorothy – her pumps name is Dorothy) die. The T:Slim is a rechargeable pump (woohoo – planet Earth friendly) but if you don’t charge it, it dies. After it dies and is then charged the insulin cartridge must be changed. I don’t know why. It just does. Just like with the Animas Ping – if you change the battery the pump also requires a full rewind and load of a cartridge, thankfully with Animas it can be the current cartridge, not so with T:Slim. Sorry jumping ahead – I’ll get back to Animas in a few paragraphs or one paragraph – I really don’t know since I haven’t written it/them yet, the point is I’ll get back to Animas.

So Dorothy is dead. It’s late at night and my daughter had just gotten into bed. I was making the rounds to the kids rooms saying goodnight and tossing in some late night criticisms of messing rooms and such when my daughter told me Dorothy had died but she (Daughter, not Dorothy) thought she could try to use the same insulin cartridge. I went back downstairs. She (daughter again, not Dorothy) sent me a text telling me she did need a new insulin cartridge and would I please come get her pump and do it. Ugh. I told her to bring it down. Instead my husband said he’d go get the pump.

This is where the flip phone vs smartphone title will start to make sense. Just hang in there.

So my husband retrieves the T:Slim pump from my daughter. Upon his return to the kitchen he asked (for the 4th time in 2.5 years) why she (daughter) was using the T:Slim instead of the Animas Ping which both boys use.

I went into a quick – ‘her diabetes, her choice’  spiel but he (husband) was not convinced. The tech guy in him wanted to know what was so great about the T:Slim, why complicate our lives by allowing various pumps in the house, blah blah blah.

My spiel about ‘her diabetes, her choice’ wasn’t going to cut it so I had to get technical.

For over 9 years one or more of my kids have used the Animas pump, currently both my boys use Animas Pings. My youngest started on Animas six months after diagnosis. It wasn’t a Ping initially, but we upgraded as soon as the Ping came out because HELLO remote bolusing. The Ping is great, but it hasn’t changed even one little bit since it debuted nearly 9 years ago. Yes, Animas came out with the Animas Vibe, but now with the Dexcom G5 available that uses a smartphone as a receiver, the vibe is really quite obsolete. The Animas Vibe is an insulin pump with a built-in Dexcom CGM receiver so the CGM data can be displayed on the pump screen. The worst part of the Animas Vibe is when they added CGM they deleted Ping technology. That, and the CGM software can’t be upgraded (to my knowledge) when it was integrated which means users of the Vibe are stuck with the same CGM software for 4 years despite advances in technology and software updates. We are used to the Animas Ping and so we forgive Animas the lack of updates. What lack of updates? The LCD screen is basic black and white, save for a few highlighted words, and to get it backlit you have to press an extra button. To get to various menus you have to go through nearly a dozen screens that you don’t need. When it is time to bolus the user must ‘scroll’ up to the proper bolus amount. The IOB (insulin on board – amount of insulin currently coursing through ones body at that moment) is multiple clicks away, as is the history of boluses, alerts, etc. Still none of that matters because PING – remote bolusing is the bomb. The kids can be in full sports gear with their pumps tucked away under layers of under-armor and pads but still dose for the 32oz Gatorade they down on the sidelines, or correct a high blood sugar without touching their pump. At night if I am checking the boys blood sugars during the small hours and they are higher than what is good for them I can bolus them without rummaging around under covers for insulin pumps.

The T:Slim,  the first Tandem pump, not the Flex, which is also integrated with the Dexcom CGM and has the same software issues as the integrated Ping (to my knowledge) is very user-friendly. Large color touchscreen, easy to navigate menus, slimmer profile, displays the IOB on the home screen, and doesn’t require user to ‘scroll’ through numbers before bolusing. Sadly – there is no remote bolus feature and no blood sugar meter linked to the pump.

Getting back to how I explain to my husband why the Tandem is ‘better’ and why my daughter wanted the T:Slim is as simple as The Animas Ping is the equivalent of a flip phone and the Tandem T:Slim is the equivalent of a smartphone.

That my husband understood.

Dear Animas – can you please recognize the importance of updating the Animas Ping pump, and for the love of Pete (I wonder if Pete feels loved?) – can you please update the Ping meter. Seriously – I have been begging you for some time to at least update the meter. The Ping meter is bulky, outdated, and uses twice the amount of blood as the VerioIQ meter (not really sure if that is accurate, but it feels like it).

Dear Tandem – incorporate ping bolusing technology into the T:Slim and the boys will most defiantly switch to the Tandem pump and I will name my first grandchild Tandem. (OK – maybe not a grandchild because I think my kids and their spouses get to name their own kids, but I will name my next pet Tandem)

I don’t know how often I will get back to write. Things are more chaotic in our home than ever before. Lots of ch-ch-ch-changes (in a few hours you will still be humming that – you’re welcome).

Writing as a parent of a children with diabetes is hard. My stories are intrinsically linked to my kids lives which are not only mine to write about.

Two of my three cwd are teens. Anyone in the know – knows that these years are hard. The stories of diabetes in the teen years aren’t always pretty. My kids are clever, kind, funny, and all kinds of wonderful but they are also stubborn, prideful, arrogant, and even – big breath – ‘non-compliant’ at times. At this point with all the non-diabetes chaos happening I’m just trying to keep my head above water and since I’m having a difficult time with life in general I have not been writing or interacting so I can focus on what is most important in our lives.

Feel free to send chocolate.

 

Purple Because Aliens Don’t Wear Hats

If you accidentally bolus 25 units of insulin when only 3.5 units were needed and each unit of insulin will reduce blood sugar by 50 points while every 10 grams of carbs would normally require 1 unit of insulin and your blood sugar was 300, keeping in mind fast acting insulin takes approximately 20 minutes to be active and remains in the body 3-7 hours with a peek between the 2nd and 4th hour, how many carbohydrates should be consumed and over what period of time should said carbohydrates be consumed in order to avoid convulsions, coma and death?

e9db43ba7048e055bf943e7e52d691be

The facts:

At approximately 10:30 pm PST my daughter checked her blood sugar. The result was 300.

She wears a t:slim insulin pump. She input the data (the blood sugar of 300) into the pump.

The pump completed the required calculations to determine the amount of insulin needed to lower my daughters blood sugar.

My daughter pushed the required buttons (really its a touch screen pump so there are no buttons) to deliver the required amount of insulin.

The t:slim pump delivers insulin very slowly – in (I believe) 0.3 unit increments. They say it is a safety feature – and honestly it would have been had my daughter noticed her nearly deadly mistake early enough.

After approving the suggested bolus on the pump my daughter clipped her pump back to her pajama bottoms and tucked in for a good nights rest.

Minutes later her insulin pump alerted her to a problem. Basically it had delivered 25 of the 30 units of insulin that was required to complete the suggested (and approved) bolus.

I am 100% certain my daughter had a total WTF moment although I wasn’t there to witness it. I just know she came downstairs saying “Mom Mom Mom Mommy Mommy Mom”

Her pump is programmed to never give more than 25 units of insulin at one time (meaning for one bolus). The suggested bolus was 30 units of insulin – thus the pump gave 25 and then asked the user (my daughter) if she wanted to give the remaining 5 units. Clearly we need to reduce the number of units that can be given at one time to perhaps 15 units but that is just one lesson we learned in the small hours of last night. 

What happened? 

Well technically exactly what the endocrinologist at my daughters last appointment said could happen and why she (the endo) refuses to prescribe the Tandem t:slim pump to children (including and possibly especially teens). BTW – my daughter didn’t care for me reminding her of that conversation with that endo. She (my daughter) doesn’t like it when others may have a valid point (I’m not sure where she gets that from).

Basically – my daughter input the 300 blood sugar as carbohydrates rather than as a blood sugar. Her pump is programmed to calculate insulin needs based on blood sugars and total carbs consumed. The amount of insulin needed by my daughter to lower a blood sugar of 300 to 150 is 3.5 units. Had she input the 300 blood sugar as a blood sugar all would have been well. However, she put the 300 in as carbs. Her pump is programmed to bolus (that means inject) 1 unit of insulin for every 10 grams of carbohydrates; which is why her pump wanted to bolus 30 units of insulin.

There are a number of screens on the pump a user has to go through in order to initiate insulin delivery. Each screen provides the user with some information such as how the pump calculated the suggested bolus, confirmation that the calculations appear correct, confirmation that the user wants to deliver the suggested amount of insulin, an opportunity to change the suggested amount, again a confirmation before it will deliver and finally a screen showing what t:slim calls the ‘Bolus Splash’ which also displays the amount of insulin being delivered.

So just as the endo suggested could happen with kids and teens (and likely adults too) – my daughter put in the 300 blood sugar as carbs and then in a matter of less than seconds tapped: ‘DONE’, ‘NEXT’, ‘YES’, ‘DELIVER’ – and voila! the pump initiated the delivery of enough insulin to kill my daughter within just a couple of hours whilst we all slumbered away.

*quick side note for those that may not be familiar with how diabetes can kill a person – people with type 1 diabetes (my kids) must take insulin to stay alive because their pancreases don’t produce it. There must always be a balance between the amount of insulin taken and the amount of carbohydrates consumed (carbohydrates are not just sugar – they are potatoes, rice, bread, fruit, milk, yogurt, pasta, etc). Too much insulin will lower a persons blood sugar and cause hypoglycemia which is typically anytime a blood sugar is below 70. A normal blood sugar is between 70 and 145 for people who do not have diabetes. The lower the blood sugar the more danger a person is in. Most people will lose consciousness, convulse, and possibly die with a blood sugar less than 20 but some people can be symptomatic long before a blood sugar of 20 or less.  If my daughter had not alerted us to the accidental overdose her blood sugar would have dropped to less than 20 within the first hour or so. It would have dropped so quickly based on the amount of insulin she delivered she may not have become aware of the drop in time to take action. 

What did we do?

Well for starters this…

IMG_4801

Banana, Teddy Grams, 2 juice boxes, mini butterfinger, mini 100 grand, full peanut butter and jelly sandwich (she was eating the other half)

The above picture shows approx. 125 grams of carbohydrates. She really needed a minimum of 200 grams but the child could not consume another bite.

She was exhausted. I sent her to bed and told her I would wake her if she needed to consume more. (IF?!?! – of course she would but I didn’t want to alarm her)

I checked her after 30 min. (11:00pm)

She was still in the upper 200s. Insulin isn’t really active until after 20 – 30 min so that was expected. She had eaten a number of fast and long acting carbohydrates (referring to how fast the body absorbs the sugar and/or converts carbohydrates into sugar) so I wasn’t sure what her blood sugar was going to do. I mean I knew it was going to go down but I didn’t know by how much or how fast.

11:30pm – blood sugar 118, woke her and had her drink 30 grams of juice.

It was at this check that I realized I had let slide a very important step in preventing an insulin overdose from ending tragically. I forgot to suspend basal insulin delivery. Basal insulin is insulin that is almost continuously delivered – a small drip basically to mimic what a functioning pancreas does for people without diabetes. Obviously my daughter did not need her basal insulin delivery at that time. Thus, I suspended all basal insulin for the next 4 hours – that should have been done at 10:30pm when my daughter made us aware of the accident. (BTW – this is only valid for people/kids who wear insulin pumps – those that get their basal insulin via an injection have no way of suspending the basal insulin)

dammit.

At 12:00am – blood sugar 124, gave 30 more grams of juice. She did not want to drink the juice this time and I actually had the first of two ‘drink the juice Shelby’ moments. That sucked.

12:30am – blood sugar 131, gave 15 more grams of juice.

1:10am – blood sugar 108, 15 more grams of juice. The second ‘drink the juice Shelby moment’

1:45am – blood sugar 145 – hallelujah she was going up. At this point the majority of the insulin, if not all of it was out of her system. I was still nervous though. It isn’t really an exact science when it comes to how long insulin is active. Each body is different. Thus I grabbed a pillow from the couch and climbed into bed with her. I felt safe enough to close my eyes at that point but I didn’t want to be far off. Prior to that I had watched a number of DVRd shoes afraid to close my eyes even for an instant.

My alarm woke me at 2:30am – blood sugar 162. Fine.

I stayed in her bed until my alarm at 6:00am.

Her blood sugar this morning 274. I think perhaps I could have turned her basal insulin back on at 2:30am but would you have?

She doesn’t remember any of the juices although she saw the juice box carnage on her desk. She woke with a slight stomach ache – well duh she drank 6 juice boxes in the middle of the night.

As a side note – it dawned on me sometime around 1:00am that I could have possibly used small injections of glucagon rather than juice boxes. I have never used the ‘mini-glucagon’ before – never had a reason to. Clearly I need to school myself on mini glucagon doses. (Glucagon is a hormone naturally produced in a persons liver as a last natural defense against hypoglycemia but it has also been synthesized and is typically used in emergency situations when a person experiencing severe hypoglycemia is not conscious. It has also been used in situations similar to ours last night or during periods of illness when carbohydrates can’t be consumed.)

Had it not been for the alert that the pump still had 5 units of the suggested bolus to deliver, or had my daughter ignored the alert this story would not be being told with sarcasm and purple hat wearing alien jokes. This story wouldn’t be being written the morning after while I wait for my youngest to finish getting ready for school. Had the pump not alarmed or had she ignored the alarm when it did alarm, this morning would be a huge black hole that no amount of expletives, sarcasm, tears or cyber hugs would bring me back from.

Diabetes is hard. I know sometimes many of us in the diabetes community make it look easy. We share pictures of bolus worthy food, laugh at the word ‘high’, share random silly moments with diabetes humor, climb mountains, run across Canada, win pageants, Nascar races, Indy races and Ninja Warrior challenges, send our kids off to college and sleepovers, walk, run, and bike. Oh and then there are these folks over at Connected in Motion who are just all kinds of awesome. We do all of these things and often we make it look easy peasy, but diabetes is hard. It is 24/7/52 FOREVER. Yes, I believe there will be a cure and there are always new treatments and tools being developed that make managing diabetes easier. But for right now it is forever, it is frustrating, it is dangerous, and it is damn hard.

I get a lot of kudos from friends, relatives and strangers who stumble on my blog posts. My kids get a lot of kudos too. It’s always nice to hear ‘you are a strong mom’, ‘you are so brave’, ‘your kids are so lucky’, ‘your kids are amazing’, etc. But I have to be honest – last night rocked my world. I was scared – more scared than I’ve ever been. With all my involvement in the diabetes online community, with all the books and blogs I’ve read, with all the conversations with Dfriends  – I forgot some of the basics – suspend the pump, give mini-glucagon. 

I am not sure how I feel about Tandem and t:slim right now. I don’t blame them or the pump but I also don’t blame my daughter. I can understand anyone doing just as she did. It was an easy mistake and even I’ve jumped through the multiple screens when I’ve given my daughter a correction bolus in the middle of the night. The danger is due to the exact reason the pump is so wonderful – ease of use. My daughter loves her t:slim pump and I want her to have the tools she deems best – it’s her diabetes. But honestly this event – it never would have happened with an Animas pump. Animas pumps will do the calculations to determine the proper insulin dose but prior to delivery the user must ‘scroll’ up using arrow keys to match the suggested bolus amount to the amount being input. Thus, the user can’t simply tap buttons without paying attention to the calculations and suggested bolus amounts like they can do with t:slim. I’m not sure about Medtronic or OmniPod pumps. Medtronic pumps don’t require the user to input the suggested bolus like Animas pumps do but the steps needed to get to the point of delivery are longer and more cumbersome than with t:slim. We’ve never used OmniPod or played with one so I have no idea how their system works.

When considering an insulin pump do research, find a way to get your hands on a pump to play with it, don’t just go with what your doctor wants you to go with. I still recommend the Tandem t:slim pump. I believe in it. It is the easiest pump to use, has the smallest profile of any tubbed pumps, has a rechargeable battery which is better for the environment IMHO (although stay tuned for the latest in a serious I think I might call ‘oops she did it again’), and holds 300 units of insulin which is important to many. I do not recommend the t:slim for younger kids. It is sooooooo easy to use and clearly at times too easy that I personally don’t believe it is the best pump choice for kids under 12. AGAIN MY HUMBLE OPINION.

I also fully support and recommend Animas pumps. Currently my boys both use the Animas Pings. Fabulous pump for all ages. There is a rumor the Animas Vibe will make its debut in the USA very very soon – the VIBE combines the Dexcom CGM (continuous glucose monitor) with the Animas pump so that the CGM results can be seen on the pump screen versus carrying a separate receiver. Sadly it means no more ping technology (the ability to program a bolus using the ping meter remote without touching the insulin pump – comes in handy for blood sugar corrections on small children after the witching hours).

Hug your kids. Hug your spouses. Love fiercely. Stock up on juice. Eat chocolate. Laugh as often as you can.

Oh hey also maybe do me a solid and go like the Stick With It Sugar Facebook page.