Batteries Not Included

Middle kid is on a field trip today.

He’s s an 8th grader.

He knows everything and can handle everything. I’m not even sure why he still lives here. Sigh.

Anyway – I totally get why he strongly requested that I not volunteer to be a chaperone on his field trip. Most teenage boys don’t want their mum hanging out with them. Although I am hoping my youngest continues to invite me to all of his events because he loves me best. I wonder if his future wife will be upset if he invites me to join them on their honeymoon or in the delivery room for their first child?

Back to the middle kid.

I support his desire for independence and I’m often in awe of him and his ability to roll with things.

Still this morning I did help him prepare by asking him to double check his supplies and devices.

  • Fruit snacks in meter case and pockets to treat lows. Check
  • Ample test strips for meter. Check
  • New Dexcom CGM. Check
  • Money for lunch. Check
  • Adequate insulin in pump. Check

Woohoo – have fun big guy.

Text from boy at 8:09am

His text: “I need a new battery. Meet me at campus.”

Huh?

Me: “How much battery do you have? Will it make it through the day?”

Him: “Pump died.”

Bugger.

Me: “When does bus leave?”

Him: “Now. I’m on the bus.”

I called the school – the bus left moments ago. I’m given the number to the teacher in charge. I should note that I had been on the phone with the school just seconds before his text to tell them my youngest wouldn’t be in today. When I called back the office staff was already aware of the situation since my boy had alerted the school nurse (who was not on the field trip) to the situation. The office or nurse would have called me had I not called them first. Can I just say I adore my kids middle school office staff and much of the teaching staff.

I initially suggested the bus meet me at the truck weigh station which is near my home on the way to the college campus they are visiting. It wasn’t an ideal plan since it would put a gigantic spotlight on my child but meeting the bus at the college campus would be difficult as over 1000 middle school students are visiting the engineering department at the campus today.

The teacher agreed.

I sent a text to my son telling him the plan.

He begged for that not to be the plan. He didn’t want to be the kid that made everyone late.

The teacher called me back. New plan. They would buy my son a battery at campus book store. Excellent.

Teacher called back again. Newer plan. Another parent chaperoning the students would pick up a AA battery and meet the bus. More excellent.

I really thought we covered all the bases. Everything worked out in the end. The boy has a battery, pump is delivering insulin, blood sugars are decent. It may even be a good lesson for him not to ignore the low battery alerts in his pump.

I should also add how terrific the teacher was on the phone with me. I kept apologizing for the difficulties and he kept saying how it wasn’t a problem and he was happy to help keep my boy safe.

We can make dozens of plans. We can check and double check supplies and devices. We can do everything right and things can still go sideways. The trick is to roll with it, laugh about it later, and tell our kids they handled things with pose and dignity and we are proud of them.

*to be fair – a battery is included when you purchase an Animas pump but a friend recently watched the old movie “Batteries Not Included” and it made a good title for this post. Plus look how adorable the little aliens were.

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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.

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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.

 

The Butterfly Effect

A man allegedly committed felony assault and my daughter ended up in the ER in DKA (diabetes ketoacidosis).

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While this story will in no way be as sexy as the Ashton Kutcher movie The Butterfly Effect you may still want to grab some popcorn and a soft drink because it will likely be long and wordy.

The story begins with a man whom I’ve never met. He allegedly committed an act of felony assault. The man needs to stand trial and so a panel of jurors are needed. My number is called and thus begins a two-day process of selecting the best panel of jurors to decide the fate of the defendant. Day one of the process passes without any issues back on the home front with three kids with diabetes managing themselves while mom is away in the city dutifully participating in our judicial system.

To make it possible for me to attend to my civic duty, my husband agrees to stay home an extra hour in the mornings in order to get the kids off to school on time. Day o1 everyone did exactly as directed. Day 02 dad thought it would be nice to treat the youngest kid to a Starbucks sandwich before school. Sweet of him, right? Well yes, but he made one (almost could have been fatal) mistake – he mentioned Starbucks to my youngest while in ear shot of the oldest. My oldest has a bit of a Starbucks addiction, so of course she sweet talks daddy into taking her as well and then dropping her at school rather than insisting she ride the bus. Shouldn’t be an issue right?

Well lets back up to just 45 minutes prior when I check in with my daughter while she is getting dressed for school. I asked a reasonable question – the same question I asked of all my kids that morning.

“How much insulin do you have in your pump?”

Why did I want to know? Because I was going to be 45 minutes away in a court room with no cell phone. I didn’t want any of the kids to find themselves without insulin. True they all have insulin and pump paraphernalia in their health offices but its easier to be proactive before school.

The boys each had plenty of insulin for the next 48 hours.

My daughter had just 33 units of insulin in her pump. I asked her what her thoughts were. She believed it would be sufficient to last the school day.

Her calculations were based on her typical grab & go breakfast of a banana and granola bar. <<<this is important in the story.

So off I went for day two of Voir Dire. (It sounds super sexy but is a painfully slow but a necessary process in selecting a panel of jurors.)

My husband takes my daughter to get Starbucks and drop her off at school. The youngest chooses to skip Starbucks to instead play on his computer for an additional 30 minutes and then walk himself to the neighbors for a ride to school.

Ahhh Starbucks with your delightfully delicious breakfast sandwiches and steamy creamy sweet beverages of pure bliss. This story wouldn’t have been possible without you.

Breakfast sandwiches and beverages received, my husband dropped my daughter off at school – likely a tad bit after the bell.

Meanwhile in Seattle I am checking in with the bailiff and ordering my own cup of coffee from a machine in the juror pool room.

The potential jurors are called to the court room. In the elevator up I send a group text to the kids reminding them to have a good day and check blood sugars. Then phone silence.

While I was listening to an older gentlemen/potential juror explain to the court that we never actually landed on the moon, my daughter was back in class discovering she had forgotten to bolus for her Starbucks.

Here is where the grab & go breakfast plays a role – she based her daily insulin need calculation on a 30 gram breakfast, 45 gram lunch and daily basal needs. 45 minutes before she left she didn’t know she would get her fix at Starbucks or that her breakfast would actually be closer to 100 grams of carbohydrates. This changed everything. While she woke up with a pretty blood sugar of 124, she was already above 500 when she checked her blood sugar in class. Based on her blood sugar correction factors she barely had enough insulin to correct. That was before lunch.

Now at this time I would like to say my daughter is a teen. She isn’t all consumed with diabetes management. She typically makes good decisions regarding food, insulin dosing, and general diabetes care. Yet she is a teen. She also knows I am in a court room and my phone is off. So she makes a decision that she will likely never make again and it was a learning opportunity. She decided to ration her insulin rather than refill her pump at school.

She decides to take 3/4 of the insulin needed for the blood sugar correction. Thus leaving insulin available for her basal insulin. (I know for those not using an insulin pump or those that have no experience with diabetes some of this may all be mumble jumble – sorry). She eats only 1/3 of a her lunch and uses the last of her insulin. She is still well over 500 at lunch.

When she arrives home she refills her pump with fresh insulin. That was at about 3pm.

I was home but catching a 15 minute cat nap before heading out for a quick birthday celebration with friends. It had been an exhausting day listening to the prosecuting attorney and defense attorney ask the same questions repeatedly. I had been dismissed from the case for reasons not explained to me. (although I have some good ideas as to why)

At 6pm she checks her blood sugar and is now over 600. She decides her pump site has gone bad and replaces the pump site but uses the same infusion site tubbing from the previous site.

I am unaware of most of this. She did tell me she was high and was doing what she needed to do. There was no need for me to ask questions or try to micromanage her. She has done it all before and I was proud she was doing what she needed to do.

She asked for a ride to the talent show at her high school. I obliged.

Two hours later I get a panicked phone call.

“Mom. I need you to come now. I need you to come get me. I feel so sick. I can’t hardly see and my legs are killing me. I need you to come get me now.”

I had been out shopping with the middle kid so we rushed the check out line and sped towards my daughter.

In the car she said “I need to go to the hospital”

We dropped the boy at home, she grabbed some comfy clothes and I grabbed a bucket and a blanket.

She was in the bathroom vomiting. She held a Keto stick that showed massive ketones. (A Keto stick is a strip of paper with a color changing tab that a person with diabetes pees on to check for ketones – I can’t explain it all so if you don’t know – ask) And yes I know a ketone meter is more accurate but tell that to my insurance company would you – thanks.

We rushed to the hospital. The whole ride to the hospital my daughter looked as if she was about to drift out of consciousness. I drove faster. All the while rotating scenarios in which I would get pulled over for speeding while my daughter went into a coma and how I could possibly end up being the most knowledgable person in the ER about DKA. Crap – drive faster.

We arrive and rush into the ER. It was a ghost town thankfully. It takes only 3 minutes to get her checked in and back in a room with a nurse looking for veins in her severely dehydrated arms while another asks questions.

What is her blood sugar? Above 600

Has she vomited? Yes

Do you know if she is positive for ketones? Yes

When was her last dose of insulin? 30 minutes using her brothers pump. 6 units

Is she wearing a pump? Yes but it’s disconnected – we think somethings wrong with it or her site.

Holy crap they speak my language. Amen.

4 attempts and the IV is in.

6 vials of blood are collected

Fluids are descending to hydrate my girl. Another 6 units of insulin is administered.

Heart rate 124

Pulse Ox 69

30 minutes later her color is improving and her heart rate is going down while her pulse ox is going up.

1 hour in and her blood sugar is in the 400s.

Ketones still very large.

Electrolytes improving.

While waiting on the doctor I did exam her insulin pump. There was no insulin coming from the tubbing. There was a smell of insulin coming from where the site tubbing attaches to the pump cartridge. Perhaps it wasn’t attached properly. I removed the old tubbing and replaced it with a set I had brought with. I primed the tubbing until insulin drops dripped from it. I attached it back on my daughter so she would be receiving her basal insulin.

The doctor came in then. He was ending his shift. He suggested once she is more stable we transfer to the children’s hospital in Seattle. It was a longer drive which is why I chose to go to the Swedish hospital only 15 minutes from our home. Plus my daughter is nearly 16 and prefers to be treated as an adult.

I expressed how impressed I was with her care so far and didn’t feel the need at that point to transfer her to children’s hospital. He left to chat with someone at children’s hospital. Then he returned with another doctor replacing him.

The other doctor and I chatted about ketones, hydration, blood sugars, and our prior experiences with DKA.

We didn’t really have any. When my youngest was diagnosed at age 2 he was in DKA because we didn’t even know kids could get diabetes – we thought it was flu-like.

Aside from that, the kids would occasionally have trace ketones if they forgot to dose for a meal but we would always handle it at home. Once when my daughter was 12 she got the flu and we went in to keep her hydrated after a few times vomiting. But she wasn’t in DKA.

After the staff had checked her level of ketones again and noted they were not going down very quickly I asked for crackers and jello. I explained that to get rid of ketones, carbs are also needed. I knew it sounded silly to the nurse but she obliged. My daughter happily ate 4 crackers and some red jello.

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I was impressed with how professional, compassionate and mostly knowledgable the ER staff were regarding DKA.

Still when they hung up the second bag of sodium chloride solution I stepped out to chat with the doctor (not to be confused with The Doctor, the last time lord).

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I questioned him about the possibility of cerebral edema. (I shouldn’t even know those words. I don’t want to know those words. I have not shared a link to explain cerebral edema because I am not qualified to determine which sites contain the most accurate information)

He said he was monitoring things and felt that a second bag would be beneficial and wasn’t concerned about cerebral edema.

I learned about cerebral edema a couple of years back when reading a story of a child lost in the ER because of the aggressive treatment of DKA. I don’t recall the article or any details aside from the idea that aggressive treatment of dehydration combined with aggressive insulin may have resulted in swelling in the brain. I am still not sure there is any consensus on what exactly causes cerebral edema in people (kids especially) during treatment of DKA. There is a whole lot of medical mumble jumble out there that talks about it but much of it goes over my head. I just knew I wanted to ask about the possibilities, especially in an ER that does not specialize in children or DKA.

My daughter fell asleep as the second bag of sodium chloride slowly dripped into her IV while I watched another episode of Doctor Who on my phone. Thank you Hulu.

Each hour a nurse named Don had come in to check her blood sugar. He was gentle and kind and did his best not to wake my daughter.

We had been in the ER for 4 hours thus far. Her blood sugar was still in the 300s. The doctor came in and administered another 4 units of insulin via her IV.  She still had half a bag of fluids to finish off.

Another 2 hours of sleeping for her and The Doctor for me.

When the fluid was finished, her blood sugar was under 200 and her ketones were down to moderate the doctor asked me what I wanted to do. I said “take her home”.

We checked out with her wrapped in the blanket I had brought.

Once home she climbed into bed and I got comfy on the couch to watch more Doctor Who while I waited another hour to check her blood sugar again.

I fell asleep after I checked her at 4am.

On Friday she slept most the day. I napped for a few hours too. She still was showing small ketones throughout the day but they were going down gradually.

It was a scary exhausting night.

As for the Butterfly Effect also referred to as Chaos Theory:

“In chaos theory, the butterfly effect is the sensitive dependence on initial conditions in which a small change in one state of a deterministic nonlinear system can result in large differences in a later state.”

Would my daughter have ended up in the ER had I not been miles away at the court-house in a court room with my phone off? Would she have called me from school to alert me to her lack of insulin? Would that phone call (had it taken place) stopped the perfect storm of questionable decisions and tech failure? If the defendant hadn’t allegedly committed felony assault would I have still been in a court room? Maybe I would have served on a municipal case involving a red light violation and been done before all the crazy started? Would the chaos have happened if she had boarded the bus with her grab & go breakfast rather than going to Starbucks?

No one can say. My daughter is well and has also learned a life lesson. Better for her to have learned that lesson now when she has a support system to deal with the big issues than when she is an adult on her own without as much support or financial resources. A friend of mine has always said home is a safe place to fail.

Parents – DKA is nothing to shrug off. It is beyond scary how quickly a missed bolus and a few mishaps can escalate into true danger. I know many don’t always check ketones as prescribed by our child’s endo. At least we don’t. Blood sugars fluctuate frequently and a missed meal bolus can usually be corrected within a couple of hours with minimal immediate harm.

Our take-away: If high due to a missed meal/snack bolus – correct by administering insulin. Do the recheck in an hour to be sure the correction bolus is lowering blood sugar. If it is not, trouble shoot other possibilities such as a bad infusion site or bad insulin. Give a second correction preferably by injection to be sure insulin is indeed administered. Then work to fix pump issues. Always plan for emergencies – maybe don’t leave the house with just enough insulin to squeak by with. Check ketones when high for an unknown reason or after staying high despite correction bolus. Be sure someone knows what’s going on other than yourself. My daughter was in a school full of folks who are able and willing to assist her even if she couldn’t contact me. Pride always comes before a fall.

If you actually made it to the end of this post you are a rockstar or need to get out more. But seriously – thank you for reading.

PS.

It was very bright in the room. I tried all the normal white light switches and was able to turn off some small lights but the huge florescent light directly above my daughter wouldn’t turn off. Then I noticed two light switches on the back wall that were red. My daughter told me not to touch them, that they looked important. Was that a dare? 

IMG_5727The large florescent light went out. The hospital continued to function. Plus I had already plugged my phone into the red power outlets labeled “emergency” which were clearly a gateway to my reckless behavior.

 

Parenting In The Time of Smartphones

I was against smartphones for the kids. Truly I was. I thought no good would come of it. There is so much danger to be found in a device that basically holds all the world’s knowledge, countless cat videos (as well as many not so innocent or entertaining), and all the evils of social media (and the good of SM).

There is really no way of effectively locking down the content available on a smart phone for kids. Not that I’ve found at least.

All kids need to make bad choices is opportunity and curiosity. <<<<That is the honest truth.

Ask my friend – her twin 11-year-old boys were wondering what ‘teabagging’ was. They found out.

How did I cave on the smart phone thing – simple ‘effing diabetes’.

I used an app on my phone to calculate insulin doses (this was when my daughter was taking daily injections rather than pumping). The app was wonderful. Basically I input all her ratios and when she needed to dose she just told the app how many carbs she was consuming and what her before meal blood sugar was. The app calculated the dose based on saved ratios and IOB (insulin on board – amount of insulin still active from a previous injection). It was basically all the brains of an insulin pump without the actual insulin and robot parts. The app was a wonderful tool. It tracked all her doses and we didn’t need to use pen and paper to log diabetes info. Thus after a bit we agreed to getting my daughter an iPhone so she would have the application as well. Worst mistake I’ve made. It spiraled from there – each of the boys in turn begged (demanded) iPhones when they were nine years old because my daughter got one when she was nine. We did what most reasonable, educated, loving, parents do – we surrendered.

It was all just fine for many years. The kids basically use their phones to play games, text me or a few friends, and call me or a few friends. Well except when they don’t. When instead they set up instagram accounts and flickr accounts and twitter accounts and downloaded snapchat, and KIK, and Vine and ???? who knows what else. We try to limit it – we have iTunes password protected. They can’t download and application without me or their dad putting in the password. The thing is both their dad and I hadn’t realized they had a window of time after the password was put in to download more crap without our knowing – or make in-app purchases resulting in iTunes charges of $45+.

I’ve been to the internet safety talks at schools. The presenters do a great job at scaring the crap outta parents but also providing a list of well know ‘evil’ applications to watch for. Applications that mostly exist to corrupt minds, allow for sexting, bullying, and to deceive parents. The problem is with every application designed to help protect our children by monitoring their apps or in the time it takes for government agencies to identify troublesome apps,  another half-dozen applications are launched that will corrupt our children; and trust me, our kids find them well before us or the government agencies find them.

Each time I attend an online safety talk I return home hell-bent on locking down the smartphones. This is always met with complete acceptance and understanding from my kids of course – said no mom ever. Instead it is met with defiance and outright rebellion “Why don’t you trust us?” “I’m smart enough to know better!” “It’s my phone!”

After much protest I do get my way. For a time. Then they change pass codes and I am locked out again.

I’m done with it.

LOL- all of thee above was written back in July. Ask me if my kids still have their smart phones. Yes.

I am sure back in July I had some idea of how this would be connected to parenting kids with diabetes and the tools we use to help manage diabetes. Hell if I remember what that point was now.

However – I will take this time to say this. Since the 2014/15 school year has begun I have taken away my oldest kids phones a few times. Yup I have sent them out the door to the bus with NO phones. No way for them to text me blood sugars. No way to ask questions. No way for me to send reminders. Guess what – they returned alive and well. Occasionally there were high or low blood sugars and

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they handled them. Sure there was a time when my son ran out of insulin and needed to use the office phone to call me. Yes, schools still have office phones. In fact most schools have classroom phones too. So remember a moment ago when I said my kids had no way of informing me about blood sugars or discussing issues – yeah scratch that. It’s true I couldn’t send them 342 reminders to check and bolus but somehow they figured it out.

Ok I know my kids are older than many. They are 15, 12 and 10. We’ve had diabetes in the house for nearly 8 years. We have some experience under our belts. Not all my readers can say the same. I encourage every family to do what works best for them and I ask every family to avoid judging families that do things differently.

I currently have both adult friends and friends with cwd who use the CGM in the cloud thingy or nightscout – honestly I am not entirely sure what it is all called. If that is what works best for you and/or your kids then Woot Woot.

I have friends who require their kids (of all ages including high school) to share every blood sugar via text while away from their parents and many of those kids likely appreciate the support.

I have friends who barely give diabetes a thought – they trust their teens and pre-teens to do what is necessary and only get involved when asked by the teen.

Parenting styles will vary in nearly every aspect of raising kids. I honestly don’t care if you breast-fed, bottle fed, allow endless TV, buy M rated video games, schedule playdates, attend church, tell them about Santa, or how your family chooses to manage diabetes. I do care if you vaccinate – please do – Jenny McCarthy and those that blindly follow the anti-vaccine ideals put others at risk daily. The studies that linked vaccines to autism have been proven false and were complete lies with falsified study results.

So basically this post started out by talking about the evils of smartphones and kids and took a sharp turn to land at the stupidity of the anti-vaccine movement. Sorry.

Confessions of an unstable parent: I look for reasons to ground my kids from their phones. shhhh.

 

 

That’s Not The Point

I try really hard to give my kids ample independence.

We compromise frequently on when I think they should be checking blood sugars and when they think they should be checking blood sugars. I try very hard not to be too needy of a Dmom – in other words I resist the urge to constantly ask “whats your blood sugar” “did you check” “did you dose” “be sure to dose” “please check your blood sugar”. Of course I still ‘ask & tell’ but I assure you not nearly as often as I feel the urge. Sometimes the kids are happy with their freedom, other times they want help, and then there are the times that despite my best attempts at a hands off approach I’m still not hands off enough for my teen.

So here’s a story I want to share.

My daughter would prefer not talk about diabetes to any of the kids at her middle school. She is still trying to figure out who best to be friends with at a new school, tossing in diabetes is both stressful and embarrassing. Thus she went through a few weeks where she simply wasn’t checking her blood sugars unless she felt funky. That wasn’t the original agreement – the deal was 3 blood sugars a day, mid morning, before lunch and before getting on bus to come home. She agreed to that. She didn’t follow through. When I discovered the discrepancies there was an argument. After voices were lowered we worked out a new compromise. By this time my daughter had started on the Dexcom G4 CGM (continuous glucose monitor). The new deal agreed on by both of us was if Dex was within 20 points at breakfast she could avoid the mid-morning check, still check a blood sugar before lunch and if that was within 20 points she could skip the pre-bus check (BTW – her bus ride home is nearly 25 minutes).

She agreed to the new compromise, all was well for another week. Then her sensor came off – that sucked because numbers were spot on but the tape failed. We have not put on a new sensor. Thus she was asked to check BS 3 times a day until we put on a new sensor. For 5 days I have suggested we put on a new sensor. She loves her Dex and misses it but she has been very busy – homework, outings, TV whatever – always I would hear “not this minute, later, I promise”.

So here we are at yesterday. I had packed her a chicken caesar wrap (corn tortilla, caesar dressing, romaine lettuce, roasted chicken). She loved the wrap I sent for lunch and asked for one when she got home. I happily obliged and at the same time showed her how I made it. Before she sat down with her wrap I reminded her to check BS. Ten minutes later I found her making a second wrap, I giggled and simply said well don’t forget to dose for the second one too, glad you enjoy them.

Fast forward a couple of hours – my middle son wanted a haircut. My daughter wanted to ride along so she could get some school supplies from target. My youngest asked if we could get some Five Guys and Fries. All loaded into the van we were off. I had put each of the boys Dbags in my purse. I didn’t ask daughter if she had hers because every time I did ask she replied with “I never leave without it, relax”.

Haircut – check, Five Guys – check for me and boys, daughter wasn’t hungry (she did already eat two wraps) so she just munched on fries. I reminded all kids to dose and headed to Target.

We wandered Target for a bit picking up more than school supplies. Daughter found me to get money for a Starbucks cookie crumble thing. Fine. “be sure to dose”

Lazy evening at home finishing up homework, watching TV and daughter face-timing with friends. Around 9:30 she came down to say goodnight, “goodnight baby – hey check your BS and correct if you need to please”.

Midnight – (well after midnight) after chatting with a new Dmom on FB for sometime I  was finally headed off to bed. Checked Sugarboy – sailing smoothly in the upper 80s, checked Middles also smooth sailing in the low 100s. Went to check daughter – searched high and low (not a pun) for her Dbag while her cat mewed at me. It was no where. Damn. Back downstairs to check counters and couches. Nothing. Out to van to see if it was forgot there. Nope. Back upstairs to check her bathroom and bedroom again – NOTHING. WTH? Back downstairs to look again. Surely it wouldn’t be in her backpack – she has consumed food multiple times since returning home. Still I checked. nope – but wait – she didn’t empty her lunch box, darn it I have to do it because I also realized I hadn’t started the dishwasher and her containers will need washing. Low and Behold – her Dbag. Thus – no blood sugar checks had been done since noon when she ate lunch. No pre-bus check, no pre-wrap check, no pre-fry check, no pre-cookie crumble check, no bedtime check and still not wearing Dexcom.

Back upstairs expecting to find some awful number.

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Nope – 123. Well crap. I mean great, but crap. The 123 means she managed to dose correctly for all her food but without any blood sugars or a CGM.

The ‘123’ is not the point though.

Things could have gone badly.

While never actually lying to me she left me to believe she was doing what needed to be done – did what I asked and reminded her to do.

Dumb luck doesn’t win prizes. 

This morning I mentioned to her how long it took me to find her Dbag at night. She shrugged it off. I didn’t try to make her lie by asking “hey what was your BS last night before bed?” because I don’t have time for those shenanigans. I asked her to please be more diligent and told her there would be no hanging with friends on Friday if she doesn’t do the bare minimum we had agreed to. Luckily she never asked me what her midnight number was even though that’s not the point.

I started this post – crap I don’t know when – sometime last week. It was mostly done just needed to upload a picture and think of some witty ending.

Skip forward (well backward now) to later that day, after school, after homework, after dinner. Her meter was on the counter along with used test strips. I wasn’t being nosey. I just felt like I should check her meter. Her last check was 5:49pm just before dinner – cool. Her check before that – 5:45am – crap. 12 hours AGAIN. No mid morning check, no pre-lunch check, no pre-bus check, no pre-afterschool snack check and no Dexcom. All the rules dismissed despite the soft reminders that very morning.

My quiet questions to her regarding the missing BS checks were not met with humility. Instead I was accused of being too protective, too nosey, too everything.

So how can this turn around?  Do I just wait it out for the next 3 years hoping that my very smart, very kind, very responsible daughter will emerge from the chrysalis of teenage years unscathed and ready to fly?

God I hope so.

In the meantime – Dex is back in business.

Supportive Friends & Stupid People (Guest Post)

My dear daughter shared a story with me. It was a good story so I asked her if she would like to share it with the community via guest post. I was surprised when she said yes because honestly lately she hasn’t wanted to talk much about diabetes. That being said she is in the middle of a list of pros and cons regarding her new TSlim pump.

Without further delay – here is her story, written for you by Sweetstuff.

So today in environmental/marine biology two of my very close friends and I were just doing our ocean poster. (Which I have to say I drew a very nice sea turtle on.)

turtlephoto And everyone is talking, and then over it all I hear across the room another student say, “what the hell?! You want me to get diabetes or something?!” And of course both my friends looked up at me like, ohhhhhh shit.

My teacher, Mrs. S, looked at me also and was like “wait until after class” because after 2 years of having me in class she understands I’m gonna educate this guy.

So when class ends he’s sitting in his seat (just so happens he has science with Mrs. S after EMS) Luna and I walk up to him and I start educating him on the difference between type 1 and type 2. (changed my friend’s name for interwebz – she’s a huge Harry Potter fan too)

Me- “ok first of all there is a huge difference between type 1 and 2.” (He’s sitting there all nonchalance) “Type 1 diabetes is an autoimmune disease where the body attacks itself.”

And guess what he said… “No you get diabetes from eating too much sugar.”

Yes, he argued with me.

Then Luna, who was still standing with me, threw in, “dumbass! She has type 1 diabetes, I think she would know!”

And guess what he said… guess… “No she doesn’t.”

Yep. He tried to tell me that I didn’t have diabetes. Oops they must have made a mistake at the hospital. -__- No.

Then Luna pulled my sweater aside to expose my pump. “Dude! You see this, it’s a medical device!” and then he came back with “No it’s not! It’s an iPod, what do you think I’m stupid?!”

Yes, I do think your stupid. (Hence the title).

Then he said, “Wait are you being serious?” no shit Sherlock.

I couldn’t handle myself anymore so I walked away to go to my next class. But apparently my lovely Luna stayed behind to talk with him cus then later in the day he came up to me and apologized. “Hey I’m really sorry for what I was saying. I completely understand now and I’m sorry.”

The world will never know what Luna said, but I’m sure glad that I have her as a good friend of mine. I don’t know what I would do at school without my amazing and supportive friends.

I could do without the stupid people though.

So yea, My daughter (although currently is a total pain in my backside) is amazing and I love her very much.  BTW – she asked me if she should include the cuss words she used and my reply was “my readers would expect nothing less from a daughter of mine”.

Parenting win.

Sad, Happy, Screwed

So Middles received his first Humalog insulin pen yesterday. I must say I love Novalog but the Huma pen is Awesome looking.

He was beyond excited. Even Sweetstuff said she’d consider MDI again based on the Huma pen.

That is the part that makes me sad and happy at the same time.

It’s sad that my kids can get so excited about new diabetes tools. They shouldn’t have to be excited about them. I am grateful my kids all have such positive attitudes about diabetes management. Life would be so much harder for all of us if they despised it all and only saw what I sometimes see (a life sentence with diabetes, possible complications, added responsibility, the threat of death daily a different normal than others).

He was so excited to try it that he wanted to eat all the things just so he could inject.

His life with the Huma pen will be short-lived since his endo is already beginning the process to get him a pump. Thank goodness because have I said what a pain in the butt diabetes in school is here in CA?

He will be carrying his pen with him at school. He will have it in his backpack with his meter. The rotating nurse that is only at his school one day of week called me twice already (from another school) telling me he had to keep it in the office. I call bullshit.

I’m not having him be late for 1st period to drop it off, then late for the carpool after 8th period to pick it up and likely forget it frequently. He will carry it with him. (there are no lockers at his school, he carries his back pack with him everywhere regardless)

The nurse isn’t happy with me. She tried to insist. I basically said I would keep him home everyday unless she saw things my way. We will have a 504 review meeting early next week so its written in the 504. I have assured the nurse that he will not inject anywhere but the office (although honestly that’s silly since there is no one there to assist him regardless – I just don’t want him doing it in the bathroom and he isn’t comfortable doing it in front of other students).

Moving from a very very early diabetes diagnosis that only required a small dose of Lantus to the more difficult Honeymoon stage is well – total suckage.

His pancreas is still producing a good deal of insulin so dosing for highs and covering carbs can be tricky and treacherous. Last night he was 280 before bed. He was also very hungry. He ate a bowl of cereal and we dosed for the elevated blood sugar and the carbs. I checked his blood sugar two hours later while he slept.

67. Frick.

I’ve been spoiled. Sugarboy can down a 15 gram juice box in his sleep in less than a minute when he’s low. He doesn’t wake up. He feels the straw and smells the sweet nectar and simply drinks without ever opening his eyes.

Sweetstuff is a bit harder – I normally have to coax her awake just a bit and put the straw to her lips. She occasionally snaps at me “WHAAAT?” but mostly just sips the juice down, takes about 2 minutes.

Middles – holy difficult! I tried placing the straw on his lips while he was still sleeping, hoping that like Sugarboy he would simply drink it down. No go. He rolled over and rubbed his lips as if a loose pillow feather had landed on them.

I tapped his shoulder and said his name in a whisper. “Middles (I don’t actually call my kids by their blog names – that would be weird), middles honey you’re low, drink some juice”

Of course he moaned and rolled over. I try again, a bit heavier tapping and loader voice. “Middles you’re low drink the juice”

Fuck – now I have Shelby in my head “Drink the juice Shelby”

Still no response – well no helpful response from the boy. I place my hand behind him and pull him into a sitting position. He moans and says “ok”

Then falls back down.

Again I get him sitting. Again I put the straw to his lips. Again he says “ok” but remains sleeping sitting up.

5 more minutes of me trying to wake him enough to drink. When he does seem slightly conscious I tell him to drink the juice. He takes a tiny sip. Lays down and pulls his covers over him.

This is when I realize I’ve been spoiled and I am likely screwed.

Again I get him up. Again I put the straw to his lips. Drink Middles, Drink.

Another 5 minutes of slow painful sips.

He remembers nothing.

This morning he checks his meter and sees the 67. “Mom was I low, I saw a juice box on my night stand.”

Yes Middles you were low. It’s all good, I had your back.

Diabetes is stupid. My kids are awesome. I’m lucky.

 

 

Glucagon? What’s That?

I should be grocery shopping. My poor kids lunches were pathetic because of my lack of grocery shopping yesterday. No regrets we were having fun at the beach. Still a bagel with cream cheese, banana and slim jim is not exactly the lunch my kids were each hoping for.

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I should be cleaning my house. At least 3 loads of laundry are in a pile in laundry room. A nearly fruitless search for socks this morning was not a great way to start the day. The dishes in the sink aren’t going to wash themselves and it is never good when the cat can chase around fur bunnies due to lack of vacuuming. Again – no regrets the beach was amazing.

I should be organizing closets and the garage – can’t list my house for sale in its current state. It would be bad for potential buyers to have to step lightly around ironman action figures, rogue legos and stacks of who-knows-what. Eh – I’ve got a bit more time before I need to list the house. It’ll all come together even if it takes a few pots of coffee and some stress eating (i never do that).

What have I been doing all morning? Glad you asked – well you stuck around this long to find out about glucagon so I assume you are slightly interested.

So my Middles has been requiring shots of Novalog more and more frequently. He had been using only Lantus (long acting insulin) to manage his diabetes. Unfortunately his pancreas is clearly pooping out sooner than we had hoped. During the Thanksgiving break he was receiving 2-3 shots of fast acting insulin due to after meal spikes (the high carb count meals during the break were not helpful).

Today he returned to school. His morning BG (blood glucose) was 155. Not excellent but not shabby considering the 457 he went to bed with (received novalog to correct that number). He ate a 30grams of carbs for breakfast and off he went. I told him to text me his numbers 2 hours post meal and if he was above 250 I would come give him a shot of novalog. (He has not been using fast acting insulin at school and thus no doctors orders are on file and he hasn’t been carrying insulin with him)

At 9:15am I get the text: “Im 401 please bring me insulin.”

I cancel a coffee meet-up and head off to the school. I give the boy 1.5 units of novalog, remind him to drink water and watch his sugars then send him off to class.

Seeing as I had just given him fast acting insulin and he is still very much honeymooning (a time after diagnosis where the patient still produces some insulin so less artificial insulin is required) I wanted to leave the school office staff with a glucagon kit.

A Glucagon kit is an emergency kit for people with diabetes. Similar to an EpiPen used by those with severe food allergies only it isn’t a pen – it is a vial of a powdered form of synthetic glucagon – (a human hormone that triggers the liver to release glucose) and a syringe filled with distilled water. To use the glucagon kit one must inject the water into the vial of powdered glucagon, swish to mix and refill syringe with liquified mixture, then inject into person with diabetes. This is normally only done if the pwd is unconscious or having seizures do to a severe hypoglycemic episode (hypoglycemia is caused when there is too much insulin and too little sugar in the body – it can be deadly). A side note – glucagon can and sometimes is used in small injections for a pwd that is experiencing a very low blood sugar but is not unconscious or having a seizure – or if the pwd is very low but can not eat or drink any sugary substance.

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quick disclaimer – I am not a doctor. I have never had to inject glucagon (so very thankful). The only experience I have is with oranges and expired kits. I can only share what I have been taught or learned. Please be sure to talk to your doctor/child’s doctor prior to using glucagon – if you have not received training at diagnosis please be sure to ask about it at your next endo visit.

Ok – moving on now that any newbies know what a glucagon kit is and why it is used.

I anticipated the office staff (there is no nurse on school property other than on Fridays) having an idea of what a glucagon kit is and who should be contacted if it is required.

I got blank stares. The two office staffers knew nothing about glucagon. Not only had they never seen one they didn’t believe any staff on campus knew what they were or if any were trained to use the emergency kit.

Seriously? My son is not the only cwd at the school. There are at least 3 others that I know of, maybe more. Certainly someone in the school knows about diabetes and glucagon and emergency diabetes care.

A bit of back story. California as a whole sucks big time at diabetes in school. There are some schools and some districts that are better than others at providing support. But up until July of 2013 no non-licensed person (meaning no one that wasn’t a certified nurse) could assist in insulin injections. In July the CA supreme court ruled that it was now legal for non-medical staff to assist in insulin administration. Prior to the ruling parents of cwd who were not independent (meaning they managed their diabetes without supervision at school) would have to go to their child’s school and assist their child or their child would not get insulin all day even for meals. CRAZY right? The new law was supposed to ensure that schools would have at least 1 or more staff members willing and able to assist in determining insulin amount, injecting insulin, and overseeing care in general. Our school district basically hasn’t decided if they want to adhere to the law. It seems they think it is a voluntary law. Anyway I’m digressing – this post isn’t so much about the laissez faire way the district approaches the insulin law it is about emergency care.

Even before the recent Supreme court ruling schools have been required to have staff trained in emergency care – i.e glucagon.

It isn’t enough to train staff. All school staff should be aware of who is trained in glucgon administration. So imagine my shock to learn that the office staff – the staff that have to deal with medical emergencies have no idea if anyone is trained or who those staff members would be. Who’s in charge of training staff and disseminating the information? Well it falls on the nurse. The nurse that is only at the school 1 day a week. It should also fall on school administration. This school nurse has dropped the ball. There was no list of people trained.

The very sweet and kind office staff member that was fortunate enough to deal with a flustered mom this morning (thats me) was doing her best to find the information and help rest my nerves. She did ask me to explain the glucagon to her and I did. I was sure to explain that a person cannot be harmed by glucagon. The only thing glucagon can do is a save a life. It isn’t like insulin I say. It is true insulin can kill a person if administered incorrectly and I am not asking for anyone to inject my son with insulin (even though its the law and I have ever right to ask that). She listened to the instructions, asked questions and assured me my son would be safe. I assured her he would never likely need the glucagon but felt better she at least listened to my explanations. I assured her I would bring in an old glucagon and train any and all willing how to use it. (Not my job but better me than a nurse that can’t be trusted to do her job). (blimey I used the word ‘assured’ a number of times there.)

The staffer called me a bit after I left to let me know that the principal, assistant principal and counselor were familiar with glucagon. She didn’t say when they were last trained. I feel better knowing that the school does have 3 trained staff members. Still it would be helpful if other staff – the ones most likely to get the emergency call from a panicked teacher – knew who was trained and that there are emergency procedures to follow in addition to calling 911.

I had not asked at Middles school who was trained prior to today because until today my son was not using fast acting insulin at school. However – I have also not asked at my other two children’s schools. They do take fast acting insulin daily at school. What if the same is true at the other two schools – no one knowing who is trained – are there people trained?  I took the nurses word for it – When she said she trained 3 people I believed her. Let’s assume she did train 3 people in each school – does anyone at those schools know who is trained? Do teachers and office staff know emergency protocol for cwd?

I miss my Texas schools. I miss the way every staff member at the schools knew which kids had diabetes, which had severe food allergies and what actions to take if there was an emergency whether it was on the playground, cafeteria, classroom, library or gym. Everyone knew the damn protocol. I wish schools across the country would recognize the importance of educating all staff regarding medical emergencies. With food allergies and Type 1 diabetes on the rise – both are increasing by 3% or more each year – schools should be prepared.

I spend hours every week tweaking insulin dosages, counting carbs, changing pump sites, charging meters, checking late night blood sugars, learning about new technology, new diabetes management methods, etc – HOURS – and my kids are right there with me much of the time. All this effort and planning should not go to hell in a hand basket the moment any of my kids step foot in a school.

So my advice – just in case like me – you have put your trust in others and believed them to be working in the best interest of your child. (Note – when my daughter was dxd I was at the school often to ensure every base was covered – I wasn’t so laissez faire myself back then) – double check who is trained in glucagon at your child’s school. Who knows who is trained? What is the emergency protocol for your child’s school? Even if you did this when your child began kinder or when he or she was first dxd – if it is a new school year – maybe check into it. Staff changes and sometimes things like emergency protocols for kids with chronic illness are not passed on to new staffers (that is the case at my sons school).

Oh my – I was a bit wordy today. Here is a cute cat picture for your time. Wish it wasn’t of my cat sleeping – tried to catch her playing with fur bunnies but that didn’t happen. Mostly she sleeps. It must be hard being a cat.

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