Use Your Words To Protect Health Care

Did you know that liquid DayQuil is an excellent chaser for Robitussin?

Day 4 of a cold that won’t quit.

Day 2 of Diabetes Blog Week.

I worked all day teaching a classroom of kindergartners and explaining to them for the second day that I couldn’t high-five, shake hands, or give hugs because I didn’t want to share germs. One little friend suggested we just give each other thumbs up throughout the day.

Is my nose really that big? Don’t answer. Gosh I hope the bags under my eyes were not that prominent when I was teaching. And this is why I don’t take selfies and I mostly stay out of photos unless they are with someone cooler than me. But I have no cat photos and a photo of DayQuil was more work that a quick selfie.

On to Day 2 and the Cost of a Chronic Illness.

And now a photo of me giving the thumbs up seems insensitive because chronic diseases are ridiculously expensive, so much so that some people just can’t afford to stay alive.

Here is the actual prompt taken from the Diabetes Blog Week FB page:

Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?
You can find a list of today’s posts here: http://www.blenza.com/linkies/links.php….

So far in my adult life I have never been without insurance.

While in college I was under my fathers policy.

While in the Air Force I was covered by the military (taxpayers, thank you – having my daughter while active duty cost me $37 which was the cost of my food while in the hospital. I had to pay it because technically the government gave me a food stipend in my pay, so if I didn’t pay for my food while at the hospital it would have been double dipping in the taxpayer funds).

After finishing my tour in the USAF I was under my husbands insurance policy through his private employer and I had both my boys while he worked for the same employer. Over the 12 years he worked for the same employer we watched our copays increase, our premiums increase, our deductibles increase, and our in network physicians decrease.

Then my husband was part of a huge layoff – basically the company thinning the higher paid employees in favor of the lower paid employees. Technically he somewhat volunteered to be part of it. He was ready for a career change and knew the severance package would be enough to get us by while he searched for another job. With the layoff we were invited to purchase COBRA. Basically COBRA allows individuals to continue on with their private company insurance for a period of 6 months by paying the premiums in full themselves. This was a huge deal since we had two children with diabetes at the time. NOT as big of a deal as a lapse in coverage could have been prior to 2012 or could be in the near future. (I rarely share any political opinions – actually I have never shared a political opinion on my blog – but anyone living with a pre-existing condition or who has a child or loved one with a pre-existing condition is very likely aware of the current American Health Care Act bill that recently passed the House floor and is due to be voted on in the Senate later this summer or early fall.

Be afraid enough to BE LOUD in your advocacy against approving the AHCA in it’s current form and use your voice.

Don’t know how to contact your Senators to ask them NOT to vote in favor of AHCA – stay tuned later and I will share an easy way to find out who your Senators are and how you can contact them. I want to stress this is not a red or blue issue. It is not anti-Trump or Pro-democrat – It is pro-humanity and caring for all the people of our great nation. Your advocacy against the AHCA is not a political endorsement for either party. It is an endorsement for compassion.

Crap – I digress.

COBRA is expensive – we have had to use COBRA twice in our 20 years of marriage. Each time COBRA premiums have been a minimum of $1500 a month and that isn’t including all the normal prescriptions and doctor co-pays.

Imagine paying $1500 a month with no income. How many working families do you know who could dish up $1500 a month for insurance with no income? How many families do you know who have a 3-6 month safety net in the bank, meaning they have enough cash to pay their mortgage, car payments, insurance premiums, food, and other debts?

Without insurance the cost of managing a chronic illness for a month can be close to the same as the insurance premiums would be, or more.

With the current AHCA that passed the House people with pre-existing conditions can be denied coverage (the bill allows states to request a waiver that would allow them to set their own pre-existing rules) if there is a lapse in coverage (see getting laid off and not being able to afford COBRA). The bill also requires those with a pre-existing condition, as well as other groups, to pay higher premiums. ^^^This is obviously a very watered down synopsis of the AHCA that will affect people with pre-existing and doesn’t even discuss how it reduces and/or eliminates other protections for those most often marginalized, including women and reproduction services such as maternity care and birth control. (fun fact – erectile dysfunction is not listed as a pre-existing condition – go figure.)

This post is already wordy and maybe even a tad preachy so I will stop here and hope that you will contact your senators and share your concern regarding the AHCA. I know the Affordable Care Act (Obama Care) hasn’t been without issues and we as a nation do need to improve how we protect the most vulnerable of our nation, improve access to affordable care for all people, and hold big pharma accountable when they increase costs of medications that are not optional. (The cost of insulin is a post for another day.)

Here is a link you can use to find out who your senators are: Find Your Senator

You can also send a text  RESIST to 50409 – and follow the instructions on the text you receive back. (Yes I know it says ‘resist’ and for some that may appear to be partisan – ok – it has become a partisan word used by the left in regards to the current administration BUT please note that diabetes and other chronic disease do not care if you are red or blue. Chronic disease does not discriminate based on political ideologies. Texting the number above and asking your senators to vote NO on the AHCA in its current form does not brand you left or right. When you email, call, or text your senators share your story. Ask them to protect your health care and the health care of those you love by writing a health care bill that protects those with pre-existing conditions and those most vulnerable such as the young and old.

Ps. It is Friday. I started this post on Wednesday, already a day behind then. Now I am four days behind. The good news is am feeling better and I have the morning before work to try to catch up and read all the posts I’ve avoided because I don’t like to risk being influenced by others thoughts before I write my own post.

I did have a fun afternoon with my kinder class yesterday creating a kinder version of Edvard Munch’s The Scream. We had spent the week learning about the systems of the human body, sans reproductive system because they are kinders. Their favorite topic to discuss each day as we reviewed what we had learned the day before, was the brain and how basically the brain does all the heavy lifting including sorting out how information that comes into the body is processed and how the brain controls, and is affected by emotions.

How discussing national health care policy likely makes us all feel.

 

 

Expect The Unexpected

That title is an over used quote and cliché.

I’m sick so hopefully you’ll give me a little leeway because creativity is not on the table this morning.

Seriously the mother of all colds hit me hard Saturday morning and hasn’t let up.

Today is Day 1 of diabetes blog week.

Diabetes blog week is a week-long blogging event with daily prompts to get folks sharing their thoughts on a particular issue or experience. For many diabetes blog week is a set of jumper cables on blogs (bloggers) who have taken a much longer than intended hiatus from blogging. Or maybe that’s just me.

Today’s prompt copied from the Diabetes Blog Week FB page:

It’s Day 1 of Diabetes Blog Week!! Today we’re talking about Diabetes and The Unexpected.
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The obvious answer is to always be prepared with extra supplies, extra meter in the car, extra carbs to treat lows, extra infusion sets in case one fails while out or gets ripped off on asshole doorknobs, and extra insulin if a traveling – like I mean 2x what one might expect to use because tile floors at condos near the beach are not forgiving to glass bottles that roll to the floor.

That’s the nuts and bolts of being prepared for the unexpected in regards to supplies, but I think there is a mental preparedness that needs to be addressed.

Diabetes is an asshat and even when one is doing everything “right” (checking blood sugars, bolusing for food, eating healthy, and exercising) blood sugars can spontaneously misbehave because Venus is in retrograde and a butterfly fluttered his damn wings in Uganda. These spontaneous highs and lows in blood sugars and the relentless care needed to stay alive and healthy can take a mental toll on a pwd. (A quick side note in case you are new to my blog. I have a fully functioning pancreas. My brain, not always so. I am a mom of 3 teens with T1D so the thoughts and experiences I share come from a place of observation and discussion regarding my kids and 10 years of living with others who live with diabetes.)

Everything in one’s life could be ideal (aside from having an organ that doesn’t do what its supposed to do) but one may still find that anxiety, frustrations, and depression can sneak in a sucker punch. Those are the days that it is harder to be prepared for.

If you are reading this you are likely already connected to the Diabetes Online community and you recognize the value of a community of people who understand ‘me too’. Even being connected some of us (caregivers of pwd/cwd included) can be too proud or too stoic to admit that we are struggling. There can be a fear of a stigma in admitting we are depressed, overwhelmed, or anxious.

I feel like the copious amounts of cold medication has caused me to wander from the topic. Stay with me.

When my youngest was diagnosed in 2007 I was not using any social media. I was not really connected to anyone else who had children with diabetes. I mostly ran into others who had an aunt or grandparent that lost a leg or died because of diabetes. Those who share stories like that don’t mean to scare us, they are simply trying to empathize but don’t know how. I spent two years without any real support or connections, although once each of those years I attended the Children With Diabetes Friends For Life conference in Orlando. An amazing experience, but still only once a year. Then my daughter was diagnosed and both kids attended diabetes camp. That allowed me to meet some local families and have some support. Still I spent another 3 years alone and afraid to admit that I was struggling physically and mentally while caring for my kids. In 2012 I found the Diabetes Online Community. That was a turning point for me. I found others who truly understood what it is to be a parent of a cwd but even better I found pwd who gave me a glimpse into what it was like to live with diabetes so I could be a better parent to my cwd.

Instead of just giving me kudos and calling me a super mom, people online gave me permission to be frustrated and sad. That was unexpected. It is great to be told what a wonderful mom I was, but it was better to be told I didn’t need to be perfect. It was great to be told how brave and strong my kids were, but it was better to be told that they were going to struggle and that it was ok.

I seriously have a foggy brain with this cold but I hope I’ve shared my thoughts in a somewhat cohesive manner.

  • Have extra supplies because you never know when your friends dog will jump on you and rip your site off.
  • Recognize that even when everything is coming up roses, anxiety and/or depression can take you for a ride, asking for help or simply sharing in the DOC is encouraged because their is no greater power than “me too’.

I’d give my life if it meant my kids didn’t have diabetes. Since that isn’t an option I have to recognize what diabetes has brought into our lives even if it means taking the good with the bad.

  • Friendship
  • Resilience
  • Strength
  • Empathy
  • Compassion
  • Courage

 

 

 

 

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.

 

You Are Enough For Me

IMG_1063

What does insecurity cause?

Fear

Anger

Depression

Resentment

I have been insecure with myself for nearly my entire life.

I’ve rarely thought of myself as attractive or smart or funny or worth anyones effort.

Insecurity leads to destructive behaviors and poor decisions fueled by fear, anger, depression and resentment.

So my wish for the remainder of 2015 and all the years to come is that my family and my friends always feel they are enough for me.

That may sound odd, maybe even a bit arrogant. That isn’t my intention. I can’t change how others in this world make my children, husband or friends feel, but I can change how I make them feel. I want them to always know that they are enough, that they are my joy, that I am their biggest fan and that they are my world.

I don’t ever want to be the source of their insecurities.

That is a hard wish to fulfill as a mom of 3 children with diabetes.

There are endless questions regarding diabetes.

“Did you bolus?”

“Did you check?”

“What’s your blood sugar?”

“Do you have fast carbohydrates on you?”

“Why are you so high?”

“How much insulin is in your pump?”

“When did you do your last infusion site?”

Those questions can often feel like attacks. They aren’t. They are just questions.

The hardest part is those questions are asked daily often to different children at different times, but that doesn’t matter since the other children hear the questions all the time. It is an almost endless narrative.

I don’t want it to be their internal narrative.

Diabetes is hard. It is constant. I want it to be nothing more than white noise.

Feeling like you are enough is a powerful thing. Feeling like you make a difference in the lives of others gives you strength and motivates you to do more while knowing you don’t need to. Feeling unconditional love encourages us to love ourselves.

I don’t ever want my kids to think they aren’t enough and I’ll be damned if I let diabetes get in the way.

 

 

 

 

 

 

An Honor And A Privilege

Having three kids with diabetes is hard.

It sometimes means late nights.

It sometimes means running supplies or even a forgotten insulin pump to the school.

It sometimes means food fights.

It sometimes means difficult ‘discussions’ about blood sugar checks.

It sometimes means educating an uninformed or misinformed public.

It sometimes means fighting with insurance.

It sometimes means consequences for ‘non-compliance’.

It sometimes means holding your breath when you go to wake your child up after not hearing alarms at night to check a blood sugar after bolusing to correct an extreme high with enough insulin to down a mammoth.

It sometimes means letting your kid ‘shout it out’ when they have reached their breaking point.

It sometimes means meeting with school staff to ensure your child is safe at school.

It sometimes means laying awake wondering about their lives after they leave the safety of home.

It also means:

Watching your children thrive despite a chronic disease that disrupts their days and nights, seeps into every corner of their lives, and rages war on their bodies.

I don’t often talk about how hard diabetes is for the parents of kids with diabetes.

I don’t ever want pity and I get a good deal of hugs without playing the diabetes card or sharing my personal frustrations with the world at large.

It is hard being a parent of a child with diabetes and I have 3.

It is exhausting.

It is scary.

It is emotionally challenging.

I do cry. I cry often. I hate diabetes. I hate fighting with my kids about diabetes.

I worry often about them when they leave my home and I hope I have armed them well to continue the fight when I am not standing shoulder to shoulder with them.

Since my first child was diagnosed I have gained over 60 pounds. 60 pounds in just under 10 years. Some of that is Rice Krispie treats and lattes. A lot of it is due to sleep deprivation, periodic depression, and exhaustion. Not getting 6-9 hours of sleep on a consistent basis causes weight gain. It disrupts hormone levels and leaves us in a constant state of ‘fight or flight’. I blame much of that on diabetes.

Still I don’t want anyone to pity me. Least of all my kids.

I don’t want them to ever consider how diabetes effects (affects? – crap IDK) me.

I don’t want them to apologize for highs or for not checking.

It isn’t for me that I want them to manage diabetes well.

It is never and will never be about me.

Well – maybe in 15 years when I write a book it will be about me. (Names changed to protect the innocent and not so innocent of course.)

I love my life.

I love my kids.

There is no job more important to me than raising my kids, providing them the support they need (sometimes against their will), and loving them.

It is an honor and a privilege to be their mom and all that comes with it.

DSC_0093

 

A Lesson In Parenting

Parenting lessons come at us in many ways.

Some lessons are from friends or colleagues who have ‘been there, done that’.

Some lessons are overt as with our own mothers or mother-in-laws that come to help with a new baby, especially the first baby.

Some parenting lessons are learned by observing or experiencing ‘bad parenting’ and consciously choosing NOT to be that parent.

There is an endless supply of books on parenting – most of those I was given or purchased have never been opened.

Then there are the social media posts, often inspirational quotes with adorable pictures of toddlers with muddy hands or faces full of food, or the posts that talk about how a piece of paper crumpled and then unfolded will never be the same thus be careful with words. I think there were also a few commercials some time ago that depicted young kids picking up the same “bad” habits (cell phone use, smoking, drinking, etc) by watching their parents.

whisper-meme

My favorite (read ‘most humbling’) way to receive parenting advice is from my own child.

My middle child – who I often refer to as Middles, is 13 now. He is in the 8th grade. He is taller than me now, his voice is getting deeper and he has just a bit of peach fuzz on his upper lip. He is clever and funny and kind and I love him for exactly who he is, even on the days I want to throttle him.

Middles has had diabetes the least amount of time between my kids. He just past his two-year diaversary on August 1st.

Being diagnosed with diabetes is never easy and every person (kid or adult) handles the diagnosis differently and also manages their diabetes differently. Some with more zest than others. Even then, ones diabetes management often has an ebb and flow due to diabetes burnout, life circumstances and for those diagnosed before the age 12 – puberty.

In my experience my Middles has had the hardest time with diabetes. My youngest (Sugarboy) was diagnosed at age 2 so he really doesn’t know a life without diabetes. My oldest (Sweetstuff) was diagnosed at age 9, and while she remembers life before diabetes she was young enough to develop a routine and habits before puberty hit. Middles diagnosed at age 11 clearly remembers life before diabetes and didn’t have enough time before puberty caused his front lobe to take a sabbatical. (IMHO)

All my kids have off days when they forget to check blood sugars or bolus for lunch or a random snack but Middles forgets most often. There were school days toward the end of the school year last year in which he went a couple of weeks without a single blood sugar check during the school hours. Now before you are tempted to judge my D parenting skills and wonder how I could let a couple of weeks go by without verifying or downloading (giggle) meters let me say I put a lot of trust in my kids and the majority of the time I am not disappointed so I don’t act like the diabetes police 24/7. Instead I do random checks on their meters – the randomness of the checks typically keeps them on their toes while allowing us to put diabetes in the corner and focus on the really important stuff like how my boys can’t seem to get their aim just right in their bathroom.

So going back to the couple of weeks of no checks…

Once I discovered the discrepancies, discussed the discrepancies with Middles and provided time for my son to get his act together I did another check. Imagine my surprise when there were few to no checks. That earned Middles the privilege of checking his blood sugar in the health office 3x a day for the last few weeks of school. He was not pleased but knew in advance what the consequences would be if he didn’t pull it together. School ended and we moved on.

Before the start of this school year we discussed how he would return to independence but chronic forgetfulness would land him in the health office 3x a day again.

Alas, I checked his meter last night. No checks for the last 7 school days. Bugger.

Now I should have likely waited a bit before discussing the issue with my dear teenage front lobe deficient son. I was a bit worked up, not just for the lack of blood sugar checks but for a few non-D related issues with him. I didn’t wait. I called him downstairs and with very little planning laid into him in a manner reminiscent of Tom Cruise (Lt. Kaffee) cross-examining Jack Nickolson (Col. Jessep) in the final court scene of A Few Good Men. (Shared below for those under the age 40 who may not have seen it. Pretty sure my face looked just like Tom’s in the still shot below).

Middles reacted just as one would expect – (re-watch if needed with Col. Jessep playing the role of Middles)

It wasn’t pretty.

Me: yell, yell, accuse, yell, threaten, etc.

Middles: yell, yell, deny, accuse meter of being faulty, yell, yell

Me: more yelling, more accusations, more threats.

Middles: Crying

long pause

Me: (ignoring what I saw as deflecting behavior) “Empty the dishwasher please.”

Middles: (slamming cabinets as he puts away dishes) “You know mom, you could have just been nice.”

Me: “What? What do you mean?”

Middles: (In a voice that was supposed to be mine) “Honey. I noticed you haven’t been checking your blood sugars. Is everything ok at school? I worry about you. Is there someway I could help you remember to check”

Me: (I had nothing. I just stood there with my jaw on the floor. I knew he was right and I knew I was just schooled by my 13 year old) finally I said “You’re right. I could have handled this better. I shouldn’t have yelled. What can I do? How can I help you?”

Middles: (because I wasn’t humbled enough) “Well, you could hug me more”

And that, ladies and gentlemen, is how your own children give you parenting advice.

 

Whack A Mole

When my kids were younger I would take them to Chuck E Cheese often. We lived in Texas and the summers were hot so the days we didn’t hang by the pool we would hang out with the mouse. Yes it was a petri dish of germs. No I didn’t take hand sanitizer, might not have even required the kids to wash hands before eating. A favorite game was always Whack A Mole. All three of my kids loved whacking the mechanical moles and often we would race since there were two games right next to each other. There was something therapeutic about whacking those plastic heads repeatedly always trying to beat the game.

IMG_6478

It is no longer therapeutic. The moles are no longer cute plastic rodents with hard hats and a grin.

The moles are highs and lows, the game never ends and I don’t get any tickets to trade in for trinkets.

Also I am now playing three games at once. Are you imagining me dashing between three arcade machines with a mallet whacking heads? Oh and the mallet – it is always attached to a single machine with a short cord so often I forget which mallet I’m holding and find myself flat on my ass because I tried whacking a mole with the wrong mallet. (giggling yet? It’s ok – I find humor in it too because if I didn’t I’d need to be drunk off the cheap beer)

My kids are 15, 13, and 11. Hormones, puberty, outside play, missed boluses, sports participation, lazy day electronics, lack of any meal schedule, late nights, endless snacking, and more make the whack a blood sugar game all that more difficult.

Yesterday on a FB page for parents of kids with diabetes another mom was waging war on a stubborn high with her 14-year-old son. Multiple highs and multiple corrections with different insulin (MDI) and she and her son likely felt they were using a 19th century flintlock pistol to lay siege on an enemy using 21st century armor. At least that is how I felt between 10pm and now at 6:30am. In the FB feed when she first posted her concerns of repeated highs despite corrections I, like others, had said if it’s a pump it may be a bad site. If it is MDI it may be bad insulin. Any chance the child was sneaking food? This exchange took place long before my 13-year-old returned home from a babysitting gig and learned of his 432.

Of course he isn’t currently wearing his Dexcom so he didn’t realize. He had checked his blood sugar at 7pm and was in the upper 200s. He and the boys he was watching ate pizza (yes part of the issue I’m sure) and he bolused and corrected. I called him a bit before 9 and asked him how he was. He checked BS and was in the 400s. He corrected.  He returned home a bit after 10 and checked, still in the 400s. He corrected again with his pump thinking it was pizza related and went off to bed, well he is a 13-year-old boy and it was a Saturday during the summer so he corrected and went off to veg in front of his Xbox. A bit after 11 I was going to bed and asked him to check again, 512. What? New pump site, new insulin, correction, kisses good night, alarm set for 1am for me. 1am – 355 not a big drop for 2 hours. Another correction. 3am 279. 6:30am 224. Stubborn ass high for sure. A losing battle of Whack A Mole or laying siege to a heavily armored enemy with a flintlock. Either way I am left feeling defeated.

Every person and child with diabetes reacts differently to insulin – oh and there are different brands of insulin that work better in some than others. Teens have raging hormones that seem to taunt the best offensive line of diabetes management.

I think I may have strayed from my original intention of this post which was to describe what it is like trying to help 3 kids of different ages and genders manage diabetes. Different games of Whack A mole – trying to use the same mallet on all three games, etc. It is true – corrections like the ones my middle son completed would have likely corrected my youngest son with little difficulty – less hormones. The corrections would have also corrected my daughter easily on most days. Why is correcting highs in my 13-year-old son more difficult? Perhaps his pump settings such as his correction factor (how much insulin he gets to correct out of range blood sugars) needs adjusting – although we had increased the ratios just a few weeks ago.

I’m not sure this post has any redeeming qualities. I think I was mostly venting. But if you ever feel like you are playing an endless game of Whack A Mole perhaps you will find solace in knowing it is a game we all play at times and if you are a parent of a teen and the game is getting harder, it is normal. I hope you won’t make the same mistakes I have made and accuse your teen of sneaking snacks (although mine really does often sneak snacks but nearly always boluses for them). I have found the less I trust my teen to be doing the right things (how do we define the right things in a teen that wants to be normal?) the more difficult it becomes to help him manage his diabetes. When he is high and I try to help discover why he immediately goes on the defensive. That isn’t helpful to either of us. I have never punished my kids for high blood sugars and I’ve never rewarded them for in-range numbers. I commend them for checking and bolusing but that is about it. Still the temptation, especially towards my middle child, for me to say “what did you eat?” is a strong one. I have said it many times and accusing him (whether I was correct in my assumption or not) has built a wall of defense. I don’t need an additional wall of defense to negotiate while trying to battle the actual blood sugar.

Sigh. 3 kids with diabetes, two teens and one right on their heels.

Thank goodness for coffee, cookie dough ice-cream and the diabetes online community.

Wordless Wednesday

Yesterday April 1, 2015 was the first day of The Health Activist Writer’s Month Challenge.

I’m not starting out well for the challenge since I’m a day behind and it’s only day two. The challenge is to write using the 30 prompts provided.

I also avoid selfies. I’m not feeling great about my physical appearance over the last year.

So instead of a selfie, inspired by my daughter’s socks that depict Edvard Munch’s The Scream, I painted what I call a 5 minute masterpiece. (It actually took about 9 minutes)

IMG_5763

The actual prompt for today:

“Since this is the start of HAWMC, post a picture that shows how excited your are for the next 30 days. We always love a good Health Activist Selfie!”

I am excited to participate in The Health Activist Writer’s Month Challenge. I am a bit worried I won’t be able to keep up. Note again how I am already a day behind. Life gets crazy. with three kids with diabetes. I will do my best and try not to berate myself when I don’t meet deadlines. Also – I should note that the title of todays prompt was supposed to be ‘Wordless Wednesday’. I dare you to find one Wordless Wednesday post of mine in the last 3 years that don’t have at least a couple hundred words.

In years past the first day of HAWMC typically asks writers to tell their story or why they write. I haven’t looked ahead so maybe that prompt is in the mix. But for any that don’t know, I write about diabetes (mostly) and our families adventures in navigating life with 3 kids with type 1 diabetes. There are funny times, scary times, angry times and frustrating times. Everyone has something and there are many days I am thankful for my kids it is Type 1 diabetes (if it has to be something). There are more challenging things to have. My interpretation of The Scream is less about how I feel regarding participating in the challenge and more of how I feel about participating in the diabetes word. (not to be confused with the diabetes community). There are simply days when the world seems to move around me while I scream.

Oh and to give you more perspective…

IMG_9702

It is less than 2 square inches – seen above with my Starry Night done back in December.

 

 

Stream of Consciousness

FullSizeRender-2

I’m a mom with three kids with diabetes. It is a thankless job. A job that comes with many arguments, tears and fears. A job that requires a lot of attention much of the time and a still a job that requires me to back the hell off much of the time. There are fights each week, who didn’t check often enough, who ran out of insulin, who forgot to charge their meter or insulin pump, who ate three bags of Cheetos and left the bags under the couch cushion, who forgot to bolus, who skipped PE by telling the teacher he/she was low when in fact no check was done, etc etc etc (is the three ‘etc’ redundant?). It is also a job that includes; way to go, great job, I know it’s hard, I’m sorry, you’re doing great, just take a juice with you and have fun, I’m proud of you, it’s not your fault, thank you for checking, go have fun, let’s go get ice-cream, who wants a brownie, etc etc etc. It is an exhausting job with late nights, small hour alarms, neglected house work, twitching eyes, and an anxious pounding heart – thundering in my chest as I try to navigate the crashing waves of success and not-quite success. It is a proud job with a star soccer player, a dedicated lacrosse player, excellent grades, amazing friendships, funny moments, big hugs, bumped knuckles and high-fives. It is a job of advocacy with tweets, Facebook shares, diabetes mom lunches, camp committees, letters to congress, educating the public, writing this silly blog, and conferences. It is a job of worry because often diabetes brings a sidekick called depression – for the kids with diabetes and the caregivers who struggle to be the rock. Will my kids battle mental illness along with a chronic illness? Will they feel important and whole despite the crazy that diabetes is? Am I doing all I can? Could I be better? Will my kids grow to be the badass humans I know them to be? Too many tears. Too many days feeling lost and confused and questioning every parenting moment I’ve had. I look at my kids, I watch them sleep, laugh, and play and I know that at those moments they are safe and happy. I can’t fix it all. I can’t take the pain away. I can’t take their diabetes away. All I can do is make sure they know I love them. Make sure they hear often how important they are. Make sure they know it isn’t their fault. Encourage them to always try their hardest and ask for help when they can’t. All I can do is take it a day at a time loving them despite poor choices and things bigger than they are. It is hard and some days I just don’t know I have the strength anymore but there are no alternatives. We keep swimming and spend more time rejoicing in the moments we are given. Don’t look back – we aren’t going that way. Things will not get easier but we will get better at navigating the course and reboot when needed because this shit changes all the time. My head hurts, my eye twitches, and my chest is tight. Yet I got up, I showered, I got dressed, I hugged my kids and today is a new opportunity to love those around me.

I Wasn’t Talking To You

Having multiple kids with diabetes can be a real challenge. <<<< Biggest understatement ever.

FullSizeRender-1

Ok in fairness this might have been the biggest understatement ever. Apollo 13. Totally unrelated to the post but most certainly an understatement.

 

Someone is always high or low or out of insulin or needs a site change or can’t find their meter or forgot to dose for a snack or has a low battery in a diabetes related device. There. Is. Always. Something.

I’m ashamed to admit that there are times I am a bit envious of my friends who have only one child with diabetes. That only lasts a nanosecond before I give thanks that multiples is not the norm.

My kids think I nag too much. The thing is, I bet on average I only ask each kid what his/her blood sugar is maybe 2 times a day and I might ask/remind each kid to bolus 1-2 times a day. That’s it. Many of my friends who have 1 child with diabetes ask/remind two to three times what I do. (Some even have the Nightscout system and have blood sugars sent to them 24/7 – totally not what I am going to talk about on this post – not sure I ever will share my thoughts regarding Nightscout other than we do not Nightscout.) I do have requirements that I expect to be met – a minimum of 3 checks during school hours and checks before eating. I let my kids do their thing and occasionally scroll through a meter to see that they are. If they are not we have a discussion. But back to how often I ask each kid about numbers and bolusing – not often.

HOWEVER – my kids hear a repeating record when they are home. What was your number? Did you check? Don’t forget to bolus. Etc. Only all the times I say it are not directed at one child alone it is distributed between 3 kids. The problem with this is regardless of whom I am badgering they all hear it – repeatedly – over and over and over again. It’s worse when I ask all three what their numbers were within the same few minutes and thus forget what each told me and ask again – ok that is my fault. Totally my bad.

Most kids with diabetes that don’t have siblings with diabetes get a break from the constant barrage of questions and reminders and nagging (all of which is done with love btw). My kids don’t often get that break because there is nearly always some diabetes dialog happening somewhere within earshot.

That must seriously suck for them.

It feels like this:

(gosh I hope you didn’t listen to the entire 10 minutes)

I totally need to work out some kind of system so there is a break in D talk.

Meri of Our Diabetic Life has a white board. Meri was recently quoted regarding one of her reasons behind her white board on the new Disney T1 Everyday Magic site “With three boys diagnosed with diabetes, I find it’s hard to keep track of blood sugar trends. To remedy this, I’ve hung a whiteboard in the hallway. We write all the nighttime numbers on the board for several days and then analyze the numbers on the weekend. Writing the number down helps us take ownership of the number. And erasing it when we’re done is completely therapeutic!”  If you are a parent of a child with diabetes and you haven’t already checked out the Disney T1 Everyday Magic site maybe bookmark it and when you are done thoroughly reading my posts and leaving meaningful thought-provoking comments you should check it out.

Anyway – I envy Meri’s white board. I suggested a white board and my kids nearly staged a coup. They didn’t especially like the idea of having to see the numbers all the time. I get that. Oh and when I say ‘they’ I mean my oldest didn’t want to see the numbers all the time. She has been struggling with some stuff of late and I think she doesn’t want an “ugly” number written down where she would have to see it. Although I think some of the pushback from the kids was due to me suggesting ‘they‘ write their numbers down which requires them to do an additional task. But oh how I would love a white board. My mistake was in asking them what they thought. Sometimes I think we (parents) just need to make decisions and tell our kids what the new procedure will be. I don’t typically go that route since my kids need to own their diabetes but sometime I daydream about how nice it would be to just look at a whiteboard rather than ask questions.

I

I was playing with shadows.

 

Ok I’m done venting now. It’s bedtime. I have to go ask for numbers. Sigh.

 

 

I’m just here for the gloves.

It is 2015 and just so there is no confusion later this really is the year Marty came to in the future.

maxresdefaultAlthough that has absolutely nothing to do with this post. Honestly it has nothing to do with anything but somehow that picture has shown up on my Facebook feed a half-dozen times since Jan 1st. Granted similar photos showed up in the past only claiming that 2012, 2013, and 2014 were all the years Marty went to. Why is this so important to people? Anyway – be sure to post on your Facebook feed how everything you post is covered under copyright law – I hear that is important. Do it while sipping okra infused cinnamon water and your personal photos will be protected while you cure diabetes.

Moving on –

My kids all have had Endo appointments in the last 1.5 weeks.

I took the boys separately but together, meaning I took them together but separate from my daughter.

I took all three kids to the appointment before this one and honestly I am surprised we all made it out alive and free of any criminal charges. Seriously – my advice (free of charge) to any parent with multiple kids with diabetes or just multiple kids in general. Schedule separate appointments if you can. Doctors visits are stressful with just one kid. The stress for all parties increases exponentially with each additional patient.

Ok so the boys had their appointments back on December 29th.

It was time for blood work too.

IMG_5282 IMG_5283Those finger puppets were in the sticker basket. I was about to try to distract the boys from the poke of the blood draw needle but honest to goodness the blood whisperer (the man whose head you see) had poked each boy and drawn their blood in less than 2 minutes flat each. Neither boy felt the needle or knew what the heck happened before the blood whisperer dismissed them. *I did not name this saint of a man the blood whisperer. I was informed who he was after posting the picture of Sugarboy on my FB page wherein another Dmom saw it and told me about the blood whisperer. He is well-known in our community as being the best phlebotomist within 100 miles of Seattle.

As far as the actual appointments went – the boys A1Cs both came down a fraction. I don’t typically share A1Cs for two reasons: 1) Diabetes is not a competition 2) It is an average. I could say my boy had an A1C of 5.5 and all that might mean is he spikes extremely high and then plummets to the lowest of lows – and voila a very pretty A1C. *my boy is not 5.5 – I was simply using that as an example.

Sadly the appointment did come a good week into the holiday break which meant the weeks numbers prior to the visit were useless. Eating at random times, continuous snacking, lots of high carb treats, missed boluses, sleeping in, staying up till the witching hours and hours and hours of sitting in front of a game system. (yup – my kids spent quite a few hours playing video games and I’m not ashamed to admit it. Ok I am a bit ashamed – we could have, should have spent more time out doing something together, but they don’t get a ton of screen time during the week and this was their break and by golly it was mine too. I’m fairly certain a weeks – fine two weeks – of video games will not have ruined them for life.)

Anyway I asked the endo to ignore the pump/meter downloads from Dec 20th on. Instead we focused on the first weeks of December. In general the boys are doing well. Each is checking blood sugars 7-10 times a day and bolusing at least 4-5 times a day thus covering meals and snacks. Middles had quite a few boluses without blood sugars and spent many afternoons/every evenings above target. The doctor discussed how grazing or frequent snacking and bolusing without blood sugars is often the reason for the later afternoon/early evening highs. Post hoc ergo propter hoc. Middles agreed to cut down on random milk consumption and snacking and improve his bolusing with blood sugars.

Sugarboy didn’t have much to discuss. The doctor noted his post lunch lows and it was determined that he boluses before eating but often runs out of time before finishing his lunch. It was decided he would bolus for half his lunch prior to eating and then the remainder of his carbs after he is done. This is how he had been bolusing for lunch since kindergarten. This was the 1st year he had switched to a straight up pre-bolus.

It was a painless visit for all of us despite blood draws – seriously every endo office needs a blood whisperer.

You still with me? – How boring is this post right? I feel like some comic relief or intermission is in order. I read this  in a comment on tumbler and I am dying to try it.

Next time you are in a public rest room and you are washing your hands and a stranger comes up to wash their hands, cup your hands under the water to allow it to pool. Allow it to run over your hands. Then with a stone serious face say to the stranger “this water is getting out of hand.”

Did you get a good laugh? Maybe stretch your leg? Good.

Sweetstuff’s visit was tonight. (which was now last night because it is ow Tuesday morning)

She hates hates hates the endo. Not any particular endo – all endocrinologists. They tell her what she is doing wrong. They nit-pick, they tell her what she has to do or should be doing. There is nothing my daughter hates more than someone telling her what she should be doing or needs to be doing. Well, she hates the sound of someone chewing. She also hates the sound of the dogs lapping up water, and her cat cleaning herself, and she isn’t particularly fond of loud breathers. But her real hatred falls on endos.

Her appointment was at 5pm. I made dinner early and fed all the kids. She and I left at 4pm to get into the city. When we arrived I asked her if she wanted Starbucks and in the same breath told her she would be getting blood work done. While she was saying something like “yes, wait, what the heck?!$&?#!” I asked her again’ so how about Starbucks?’. We checked in and then went to the blood draw window. I told the receptionist I needed the blood whisperer (only I used his actual name). My daughter gave me the most annoyed yet somewhat intrigued look. We found a comfy spot to sit and soon she was called back for her blood draw. I told her she wouldn’t feel a thing and it wouldn’t take but 2 minutes. She gave me an exasperated look and declared to the blood whisperer that she was a hard stick due to spider veins. Where does she get this stuff? Three minutes later she came out looking both in shock and in awe. She admitted it was crazy how quickly and painlessly the whisperer did his job.

Moments later we were called back for measurements and vitals. She got on the scale and then checked her height. At this point I declared “You’ve been weighed. You’ve been measured and you’ve been found wanting.” She rolled her eyes. I was cracking up. It isn’t often I can quote a favorite movie in the literal sense. She was not impressed. Well she didn’t let on that she was impressed but I saw the corner of her mouth curl up just a smidgen while she shook her head with disapproval for my shenanigans.

When the nurse came in to ask for Sweetstuff’s pump I inquired if they had yet received the software to download a TSlim. They had not. They (the hospital group) have not endorsed the Tandem pump just yet. No doctor in the group has prescribed one (although I think our doctor would like to). I had anticipated that and I had printed out a months worth of pump data and meter data.

When the doctor came in with A1C results and to discuss the pump data with me I motioned her (the endo) towards my daughter. I said “she needs to discuss it with you, I’m just here for the gloves” waving a couple of rubber gloves in the air. Seriously the kids and I totally play with the gloves while we are there and I always leave with a few in my pockets – you never know when you might need a non-latex glove.

Sweetstuff’s A1C also went down. Not exactly where we want it but not anywhere that would suggest she isn’t doing most of what she needs to do. Her data shows 5-8 checks a day and 4-6 boluses a day. While she has had a number of extreme highs they could be explained by missed boluses, bad infusion sites or the occasional dead pump battery or pump out of insulin. She is a teen and while I don’t like to admit it to her often – she is doing a very good job most of the time and her occasional blunders are nothing out of the ordinary for a teen her age with diabetes.

The endo pointed out a half-dozen ways she (my daughter) was doing wonderful and made only a few suggestions of things that might improve some of the not great numbers. The endo complimented her on the number of blood sugars taken and her lower A1C. The endo never criticized, told her she was screwing up, or even told her she could do better. It was the perfect visit.

My daughter left feeling empowered and successful. IMHO – there is no better way to help a teen with diabetes do better than to allow them to feel pride and independence.

Woohoo! 3 Endocrinologist visits done and no school was missed. All the kids doing well. Plus I scored a few gloves.

My bit of advice – again free of charge:

  • Don’t fret over numbers the few days before endo visits – those numbers right before will not have an effect or large effect on your kiddos A1C overall. That goes for my adult friends with diabetes too – so many of you fret over bad numbers right before the endo. Stop that.
  • As much as possible have the endo talk to your child, even the littles ones. Empowering the kids makes a humongous difference in how they view their diabetes – do they view it as theirs or yours? Let them own their success or their short comings.
  • An A1C is not a report card. It is a progress report and can help you/your kiddos see what needs to be done to change things. Still it is an average – the numbers could be 400, 36, 390, 54, 512, 59, 464, 61, 63, 42, 119, 84, 72, 123, 111 averaged = 172 which would be roughly an A1C of 7.5 which is what the ADA recommends for kids. In no way are the imaginary numbers I listed above healthy. Again an A1C is an average of the amount of sugar in a person’s blood over a 2-3 month period. I was once told by an endo that just 2 missed boluses (resulting in a substantial highs) can increase an A1C by as much as 0.5. Imagine how many missed boluses a teen has in a 2-3 month period. Those 2+ missed boluses are not the only indication of how well the teen is managing his/her diabetes. 
  • Download pumps and meters at home between endo visits. I don’t do this and I should. Those pie charts, bar graphs and line graphs provide a wealth of information. I have no problem changing my kids basal rates, carb ratios, and correction factors. Why do I avoid pump downloads? Imagine how much more informed I would be if I looked at the data each month and taught the kids how to review the data. The data from Middles pump showed clearly that he was bolusing without blood sugars. I had no idea and it had been a chronic issue with him since school began. Knowledge is most certainly power.
  • Don’t forget your gloves. They are basically party favors from the endo.

I know this was long, but seeing as I haven’t posted in a couple of months I was making up for it.

Happy New Year all.

May 2015 find you happy and healthy, surrounded by love and laughter and full of moments that turn to memories.

Cheers.

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.