Dear Newly Diagnosed,

A friend just sent me a text telling me of her friend in the UK whose son was just diagnosed with Type 1 diabetes.

He’s 11. If he is a wizard he’ll be heading off to Hogwarts in a month and no doubt Madam Pomfrey would fix him right up. Perhaps there is a potion similar to Skele-Gro that can be used to grow new beta cells.

If only.

The text from my dear friend regarding her friends sweet boy is just one of three I’ve received in the last few months. I’ve connected via the phone with the other two moms but since this friend of a friend is in the UK, phone calls are more costly so I told my friend I’d write this post so she could share it (my friend asked if she could share my blog with her friend). I haven’t written in some time so my recent posts may not make sense or be relevant to a newly diagnosed family.

Why didn’t I write ‘a parent of a newly diagnosed child?’

Because honestly when a child is diagnosed it is a family affair. I mean no disrespect to those living with diabetes, I’m not suggesting those of us with fully functioning pancreases will ever truly understand all that it is to live with diabetes. We won’t. Just like those who have diabetes that don’t have children with diabetes may never truly understand us. The best we can do is be empathetic and try our best to be supportive of each other.

Crap I’ve already digressed and now the new parent is wondering when the bloody hell I will get to the point.

So here goes, if you are a parent, grandparent, family friend, or sibling of a recently diagnosed child, I am sorry you have reason to read this.

There will be many well-meaning folks that will do their best to console you. They will say things like:

“At least it’s not cancer” Yes, cancer is bad. Very bad. And yes at least diabetes is not cancer, but right now diabetes is a huge scary monster that has, in your mind, stolen your healthy child. Thus, unless the folks who say ‘at least it’s not cancer’ have had cancer, lost someone to cancer, have diabetes, or love someone with diabetes, they don’t understand the difficulties of a lifetime diagnosis but they mean well.

“It could be worse” Things can always be worse so this phrase can be used for anything. Stubbed your toe, could be worse, could have whacked your balls on the corner of the table as you tripped, thank goodness it was just your toe. Still your toe hurts and knowing it could be worse doesn’t make you feel better. Again, well-meaning people say stupid things because they don’t know what else to say.

“Oh my granny had diabetes, lost her leg, she did.” People say this in an attempt at empathy. They are trying to connect to you. They are trying to say they understand. They do not know that when a person with diabetes or a parent of a child with diabetes hears of amputations, complications or death due to diabetes we immediately think of how that could happen to the ones we love, or themselves if they have diabetes. Of course pwd/cwd (people with diabetes/children with diabetes) and those who love them don’t need or want these reminders. That B roll is often played in our minds. Thankfully it becomes a re-run that we skip over as we watch those we love with diabetes thrive.

You will also get a lot of questions and you will get the same questions repeatedly from family and friends for the first bit after diagnosis and it will be both annoying and comforting. Annoying because you are answering the same questions again and again but from different folks. Comforting because those that ask questions care about you and your child and that will let you know you have support. Just keep in mind it is a new person asking each time unless you have some self-absorbed neighbor that asks the questions but only as a courtesy before they start telling you about their most recent colonoscopy. You know the type – the type that just wait for their turn to talk. You should totally toilet paper that neighbor’s house, but then you’d have to listen to them whine about how their house was toilet papered. (If there is no such thing as toilet papering a home in the UK – it is when full rolls of toilet tissue are tossed up and around trees and shrubs in the garden.)

This is already excessively wordy. Here is a picture of my dog to break up the wordiness.

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There are many ways to manage diabetes. There are insulin pumps that are worn 24/7/356 that infuse insulin into the body. Most types of pumps have tubbing that connects to the body via an infusion site that is moved every 3 or so days. Most newly diagnosed pwd/cwd spend at least a few months taking daily injections. This is often referred to as MDI (multiple daily injections). There would be one injection of a long acting basal insulin that helps maintain sugar shifts due to hormones and the normal functions of the body. The other daily injections are taken when the pwd/cwd eat or to correct a high blood sugar. Using an insulin pump means no long acting insulin since the insulin pump continually infuses insulin to simulate what a working pancreas would be doing and then is also used to bolus insulin at meals and to correct high blood sugars. The amounts of insulin various based on amount of carbohydrates consumed, current blood sugar, and insulin sensitivity factor.

All pwd/cwd check their blood sugar multiple times a day using a blood glucose meter. A tiny poke of the finger to draw a tiny droplet of blood and 5 seconds later a little device tells you a number. It is not a report card. It is not a good or bad number. It is a just a number. The number will help you decide how much insulin is needed or if carbohydrates are needed. I stress the not a good or bad number because small children will attach their self-worth – shoot adults occasionally attach their self-worth to that number. Imagine if 5-10 times a day you were told you were good or bad. So, it’s a number and a decision is made based on the number then the world continues to rotate on its axis.

Obviously if you are a parent of a recently diagnosed child or a recently diagnosed adult you know about bolusing insulin and checking blood sugars. I included those bits for extended family and friends who did not get a crash course about diabetes care in the hospital. But the reminder about good vs bad is for everyone.

Below are a list of insulin pump manufacturers if you are interested in learning more about insulin pumps. There is also a link to the Dexcom page. The Dexcom is a continuous glucose monitor. It monitors blood sugars 24/7 for the length of time it is worn. My 3 cwd use the Dexcom G5. They typically wear each sensor or 14-21 days (per manufacturer it is only approved to be worn 7 days but very few people follow that). My two boys use the Animas Ping insulin pumps. My daughter uses the Tandem T:Slim. We have never tried the Omnipod insulin pump. Yes they are listed in order of our preference although Animas and Tandem are equal in my preference. Animas, Tandem, and Medtronic all offer an integrated pump (Continuous glucose monitor data can be seen on pump screen) but our family choses not to use integrated pumps since CGM technology advances faster than pumps and we like to be able to use the most recent CGM tech. Also the Enlite CGM that is used with the Medtronic pump is substantially inferior to Dexcom technology per user experience and data submitted to FDA. There will be a new Tandem pump released by year-end and if I understand things right it will be able to be updated with new CGM tech as it comes out.

Pumps:

Animas 
Tandem

Omnipod

Medtronic

Continuous Glucose Monitor: Dexcom

I know much of this seems overwhelming and the pump/CGM stuff may be too much to think about right now.

If you or your child was diagnosed recently know that there is a grieving process.

Receiving a diabetes diagnosis is hugely life changing. As a parent I have received 3 such diagnosis. Each time my reaction has been different in some ways but the same in many others. Each time I have had to allow myself to grieve for the future I had pictured for my kids. I do believe my kids can do everything people without diabetes can do but they will always have to do so much more along side it. So I grieve for their loss of freedom and their loss of completely carefree days and nights. People with diabetes climb mountains, compete in professional and olympic sports, race cars, become rock stars and actors, serve in public office, are school teachers, truck drivers, doctors, nurses, mail carriers, and more. You or your child should never consider the possibility that you/they couldn’t be anything they want to be.

There will be sleepless nights when diabetes behaves badly with high or low blood sugars and as a parent you stay up or set an alarm to check your child’s blood sugar while he sleeps. I strongly suggest sharing this responsibility with a spouse. I took on all diabetes care myself when my youngest (first one) was diagnosed since I wasn’t working outside the home. Sleep deprivation is a bitch. It causes weight gain and can lead to depression. Share the responsibility and take care of yourself or you will be of no use to your child or anyone else.

I feel like I’ve rambled on far too long.

Again I am sorry you have reason to be reading this.

I would like to tell you it gets easier.

It doesn’t. But, you get stronger. Your child gets stronger.

A side effect of diabetes in children is they (the children) often grow up faster. Facing ones own mortality can do that. To reduce the negative side effects of diabetes I encourage you to keep doing everything you were doing before. It means more planning and it likely means trusting others (after a thorough tutorial) to care for your child. Make diabetes second or even third to everything else. Say good morning and hello before asking for a number. Focus on saying yes to as much as you would have said yes to before the diagnosis.

In case you missed it in my profile. I am not a doctor or medical professional. I am a mom of three children with diabetes. My youngest was diagnosed at age 2 in 2007. My oldest was diagnosed 2 years later at age 9 and my middle child was diagnosed 4 years after that at age 11. Don’t worry – multiples is rare. We are just special. I am not an expert at anything. I have not always followed the advice I’ve shared. I only can share it now because I learned the hard way what didn’t work.

My last piece of advice is to find others like you. If you are a parent find other parents. If you are a newly diagnosed adult find other adults with diabetes. Online connections count. You can always find me via my Stick With It Sugar Facebook page and you are always welcome to email me through this blog. I will do my best to answer questions or connect you with smarter people that can answer questions I can’t answer.

To quote Christopher Robin (AA Milne)

“You are braver than you believe, stronger than you seem, and smarter than you think.”

 

 

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.

event_batteriesnotincluded

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.

 

I Get It Wrong Often

Last night my Middles, (13 year old teen boy) was over 400 before going to bed.

He was 238 before dinner and bolused (used his insulin pump to deliver insulin into his body) for dinner with extra insulin to correct the high.

That was 4 hours before he was going to bed.

He was surprised by the high blood sugar before going to bed.

The infusion site he had on was only 36 hours old.

I chose not to drill him regarding what he might have eaten after dinner that could have resulted in the high but I did assume he had eaten something or somethings.

I just told him to correct (bolus insulin for the high) and to go to bed.

I set alarms (two) on my phone to wake up and check his blood sugar around midnight.

I don’t remember hearing the first alarm.

I do remember hearing the second alarm and I remember silencing it.

I awoke with a start at 4:11am realizing my neglectfulness.

In the moments walking between my bedroom and my sons bedroom my heart pounded against my ribs. The fear parents of children with diabetes experience when we know there is the slightest possibility our kids could have experienced a sever low at night can be monstrous. The relief when we see our child sleeping peacefully while their chest slowly rises and falls with each breath is equally as immense.

My boy was sleeping soundly and breathing normally. Exhale.

I checked his blood sugar.

403.

Fuck.

My assumption that he had eaten some rogue food between dinner and bed was incorrect. Instead the high before he went to bed was very likely due to a failed infusion site (place that insulin from his pump is infused into his body). The site needs to be replaced a minimum of every 3 days – his most recent site was only 36 hours old and shouldn’t have failed.

I had to wake the child and ask him to come downstairs to replace the site and insulin in his pump.

He didn’t complain. He felt like crud and he knew that insulin was the only way he would feel better.

Ok he whined a little. It was 4:15am and he didn’t sleep as soundly as I had first imagined.

New site, new insulin in his pump and a large bolus to correct his blood sugar.

We don’t own a ketone meter (a small device similar to a glucometer that checks the amount of ketones are in the blood via a finger stick/drop of blood), ketones are often present during periods of extreme high blood sugars. Ketones are produced when the body burns fat for energy, excessive ketones poison the body and when combined with dehydration can result in ketoacidosis, a life threatening condition.

Before he came into the kitchen to get his new site and insulin I heard him in the bathroom. It was too late to ask him to use the ketostix (paper strips with a small patch on the end that is chemically treated to change color if ketones are present). The ketostix are not a very accurate way to test for ketones – because the paper sticks check the urine for ketones the result is about 4 hours delayed, meaning not the most accurate ketone level, but at least it is an indication of what was happening in this body. Alas – he used up all his urine so no ketone check.

Sent the boy back to bed.

He will need to go to school regardless today. I am scheduled to work.

In the hour since I awoke with a panic I have been berating myself for yet another fail.

We own Dexcom CGMs (continuous glucose monitors). CGMs check a person’s blood sugar every 5 minutes and have alarms that can alert the wearer and others that blood sugars are high or low. Had he been wearing his CGM we likely wouldn’t have ever got to be in the 400s last night and certainly wouldn’t have stayed in the 400s all night as I slept through phone alarms.

Had I done the nagging parent thing at bedtime to determine if he had actually eaten between dinner and bed I might have been able to determine that the high was in fact due to a failed infusion site rather than by a teen that likes to snack and forgets to bolus.

Had I just stayed up between 10pm and midnight I would have not been sleeping at midnight and I would have been able to replace the failed infusion site 5 hours ago vs. letting my son sleep with such dangerous numbers.

Like I said, I get it wrong often.

I’m sorry middles.

Ps. In the 40 minutes since I wrote this and went to take a shower for work I spoke with my husband. He confirmed that he observed Middles eating multiple tangerines before checking his bedtime blood sugar. Thus, it is likely he was high before eating the tangerines but also likely he forgot to bolus for the tangerines. Suggesting that while he bolused for the high before bed he neglected to take insulin to cover the tangerines.

Sigh……

The Butterfly Effect

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

butterfly-effect

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.

 

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?

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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…

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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.

Explosives Detected

Recently we were fortunate enough to host one of my daughters BFFs from CA. Her sweet friend stayed with us for a week and it was wonderful watching my dear daughter laugh with her friend.

Sadly the visit had to come to an end. Although this friend is past the age of ‘unaccompanied minor’ according to airline regulations we still wanted to escort the friend to her departing gate.

My husband was not able to stay home with my two boys which meant me and all my kids accompanied the friend to the airport.

Traveling with diabetes can often be a real pain in the hindquarters and much of that pain can simply be getting though the security check points at the airport. Accompanying someone to the gate with gate passes means passing through the security check points.

The airline had no problem issuing the four guest passes we needed to escort the friend to the gate. The lines for security weren’t too terrible and we had plenty of time since her flight was delayed.

My boys each wear the Animas Ping pump. My daughter wears the Tandem TSlim.

Sometimes the position of the insulin pump can effect the metal detectors. We never send the pumps through the X-ray machines – some do – we don’t.

I asked all the kids to move their pumps in the center of their bodies – in front of belly buttons. I don’t know why this makes a difference but it does.

I don’t let the kids go through the full body imaging thingy because of the pumps.

We lined up for the old-fashioned metal detector line.

I have always warned the TSA agents that my kids wear insulin pumps and will likely cause the metal detector to alarm. That way we don’t waste time with the TSA people asking kids if they emptied their pockets – blah blah blah.

In the past if the kids don’t alarm (they don’t always alarm) TSA waves us on.

My daughters pump always alarms and since she is over 13 that means a full body pat down. Its annoying but she’s normally a good sport.

This time my boys did not alarm. We should have been waved through. Nope.

The TSA agent had a bee in her bonnet. She insisted they had to swab the boys.

Me: “But they didn’t alarm”

TSA: “Its policy”

Me: “But they DIDNT alarm”

TSA: “They are wearing pumps”

ME: “You wouldn’t have known that had I not told you – you can’t see the pumps.”

TSA: “Its policy.”

Me: “Oh for the love of bubble gum”

It took nearly ten minutes for them to find a TSA agent to do a swab and pat down my daughter since it was shift change time.

FINALLY someone shows up to swab the boys. This meant they had to touch their pumps then get their hands swabbed.

Sugarboy was first. Touch pump, swab hands, insert swab strip into machine.

“EXPLOSIVES DETECTED”

Oh Holy Hell.

The man with the cool mustache looked down at Sugarboy, looked at me, then looked at my other son.

Thankfully he said “its the machine. we will give it another go.”

Of course this meant waiting on a TSA supervisor to come resent the machine. Another 5 minutes. Machine reset – touch pump, swab hands, insert swab strip. All clear. Rinse repeat for Middles.

Meanwhile my daughter is waiting on a female to do a pat down. I look over and she is standing with her arms held out while the TSA agent recites a very long speal about what she is going to do during the pat down. My daughter is rolling her eyes and trying to just say “ok I’ve done this” but the lady just keeps talking.

Nearly 20 minutes after we stepped through the metal detector we were allowed to carry on.

Of all our air travels – this was by far the longest we have been detained by TSA. The worst part was we weren’t even boarding a plane.

The moral of this story –

If you have an Animas pump try placing it in front of the body just under the belly button and for the love of Pete don’t tell TSA first.

Also – plan for these possibilities when traveling by air – plan extra time because you will never know if someone peed in the TSA Cheerios earlier in the day causing some of them to be less than accommodating.

We have not used it but I have heard many in our club to have great luck with TSA Cares. If you have air travel coming up you may want to check into it.

For all my dear friends traveling to Children With Diabetes Friends For Life conference this week – I wish you safe travels and easy check points.

 

I Saw Red

Middles has been pumping via Animas Ping since Jan 5th. We’ve been mostly faithful Animas users for over seven years. Sugarboy started pumping with Animas in Aug of 2007. He upgraded to Animas Ping just as soon as it was available. Sweetstuff started pumping Animas Ping in Aug 2009 just 3 months after diagnosis. She switched to Tandem TSlim in December of 2013. Both Sugarboy and Sweetstuff used the Medtronic 530 and Enlite for 90+ days during a study as well but those units were returned after the study. I’ve never shared my thoughts regarding the 530 pump and Enlite because they wore them as part of a study and it wouldn’t have been ethical for me to share my thoughts regardless of our experience with the devices.

Over the years we have had very few issues with our Animas pumps. But tonight we had an issue with Middles pump.

He got a low battery alert earlier today but we were busy so he acknowledged the alert but didn’t switch the battery right away.

Nearing bedtime my boy checked his blood sugar and was running high. Unusually high. He went to correct and couldn’t read the screen. The text was red and jumbled up.

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Thinking it might have something to do with the low battery we replaced it. We would have replaced it before bed anyway.

Although difficult to read we changed out the battery and completed the required full rewind and load for the cartridge. I was able to do this despite the limited visibility because after 7 years I know the screens by heart.

After the battery change and cartridge load it was still unreadable.

Thankfully we have a spare Animas. I input Middles pump settings in Sugarboy’s old pump and sent him off to bed.

I dialed the toll free number on the back of the pump as my husband was suggesting it was too late and surely they wouldn’t be open. Silly man. Pump companies always have 24 hour tech support.

After a failed attempt to reset the contrast with the help of the Animas tech rep I was told a new pump would arrive Wednesday. Man I love Animas. Im also very relieved we had a spare pump handy.

Hoping for a safe landing for Middles and for some quality TV tonight so I can stay up and check his blood sugar in a couple hours to be sure he did land safely.

 

Oh Be Careful Little Mouth What You Say

I am forcing myself to share this very very unflattering photo. It's my punishment for stupidity. You'll understand after.

I am forcing myself to share this very very unflattering photo. It’s my punishment for stupidity. You’ll understand after.

So last night. Wait I should start earlier. (quick warning – when I got to 1356 words I realized how long a post this would be. It is more than 1600 words. If you would like to skip the story and go straight to the moral feel free to scroll down – it’s an important lesson IMHO for all parents of kids with diabetes)

So yesterday afternoon I took Sugarboy up to Stanford to get started in a diabetes technology study. Since it’s a study I can’t/won’t share what he is wearing for the study or really any details. But I will say that his bedtime blood sugar needs to be under 260 for him to complete the study each night. The study is many nights long.

After the visit to Stanford he was starving. It was early, maybe 4pm. He wanted a personal pan pizza from Target (they sell Pizza Hut personal pan pizzas). While they are delicious they are also the antiChrist when it comes to diabetes management. Not only are they 80 grams of carbs but also loaded with thick gooey cheese and I’m certain they must use a good deal of butter/oil in the crust because multiple napkins are necessary. Of course he gets the pepperoni which adds an additional layer of fat.

A bit about carbs mixed with protein and fat. They (the carbs) are digested at a painfully slow rate. It takes a great deal of experience in the diabetes world to determine how best to dose insulin for meals that are what we call the triple threat (high carbs, high fat, high protein). Sometimes we are able to win the battle – extended doses of insulin over a 4-8 hour period after consumption usually does the trick. If you are a newbie to the diabetes world don’t fret about not figuring it out the first 27 dozen times – its something that takes time to figure out and every person with diabetes digests food differently – also not all pizza is created equal. Thick crust will take longer to digest than thin crispy. Veggie vs. Meat lovers – game changer.

Anyway – it was early enough in the day I thought all would be well. Eat at 4pm, do an extended bolus (insulin pump jargon for those taking multiple daily injections) and all should be well by bedtime in 5 hours.

I could not have been more wrong.

Bedtime blood sugar: 457 (see even those of us that have been dosing for pizza for over 7 years get it wrong and diabetes goes all wonky) (also note that we had neglected to check his blood sugar from 4pm to 9pm – not great after eating pizza)

I asked Sugarboy to dose for the elevated blood sugar (y’all do know that I don’t talk like that to my kids – that’s for y’alls benefit – what I actually say to my kids is “ok correct” but that wouldn’t make sense to some readers – then again most my readers are seasoned and would know so I could easily just type what I say and y’all would know but what if a newbie is here reading – imagine how “ok correct” would sound to them – holy crap I digress – also I might have used the word ‘y’all’ a few times and I’m not sure I took a breath while writing all this – can you say run-on)

Ok so Sugarboy dosed insulin to correct the high. He asked if he could sleep in my bed. With hubby away I love having him sleep in my bed. Also it makes for checking his blood sugar easier when he’s near me. (well it does but I still need to get up to check two other cwd so really thats a non-point)

He wanted me to go to bed with him. This is where mistake #1 was made.

I said I couldn’t because I would need to stay up and check his sugar in two hours so I could start the study computer.

His face dropped. He looked so sad. I thought because he wanted me to cuddle with him. I couldn’t cuddle – I would’ve fallen asleep – it wasn’t that I didn’t want to cuddle.

He then announced I could go to sleep. HE would stay up and check his sugar and start the study computer.

What? No. I tell him he needs to sleep and I have things to do so it’s all good.

It didn’t register right away. I mean it didn’t even register last night. It took till this morning to register what was happening. But Ill get to that in a second.

Two hours after he dosed insulin I checked his blood sugar. 431. #&@!

Ok so we likely didn’t screw up the dosing of the pizza. Clearly his infusion site (place where pump tubing attaches to body to deliver insulin) went bad. It was only at the tail end of day 2. The sites are normally good for 3 full days even longer sometimes if we forget to change it out.

Participating in the study last night was off the table. No big deal. Only it is since we are kinda on a time crunch since the study takes 3 months and we are moving at the end of 3 months. Each night we miss leaves us less of a window to finish the study.

Again no longer concerned about the study I focused on changing his infusion site. Sometimes I can get this done without waking him. Sadly we are out of the quickset infusion sets that are easiest to place IMHO. I had to use a different type of infusion site that I am not entirely familiar with.

I fumble around with placing the sensor in the applicator device for a good 7 minutes. I cock the device, remove the little plastic piece that protects the needle (or my fingers which ever), place it on his skin and press the release buttons that plunge the needle and flexible cannula into his skin. He woke up. He screamed in pain. He tried to grab at the applicator which I had not yet removed from his skin. I patted his hand and apologized. He went back to sleep. I gently lifted the applicator. @&#@

I had not removed the tiny pieces of paper that cover the adhesive parts of the infusion set. Thus the site came up with the applicator. I just punctured my kids skin for nothing. And worse, I’ll need to do it again.

Back downstairs. Another infusion set. Less time to place it in the application device this time around. Back up stairs. cock, remove paper, remove needle cover , place on skin, press, pull – Success – he did stir again but no scream this time. (I should note to any newbies or veterans considering a pump – very very rarely do my kids complain about pain when inserting a new infusion site. They agree it isn’t really painful and if it is, it only lasts a micro second. Now being lanced with a needle while in the middle of REM – well who the heck wouldn’t occasionally scream).

I fill the pump tubing with insulin then attach to his body. I dose him with insulin to correct the high. Keep in mind he has now likely been really really high (400+) for 7 hours.  The correction is a very large amount of insulin. If he had received any of the previously dosed insulin I could be putting him in danger. Thus I set an alarm to wake up in 2 hours.

At 1am my alarm goes off and I check his blood sugar. 301. I give him another correction. sometimes the longer a pwd is high the more difficult it is to correct. I don’t know the science behind it – I just knows it happens.

I set another alarm. 3am – 238. There is still a good deal of insulin working in his body so I do not do another correction.

This morning he is a very pretty 113. Of course he feels like crapola.

Meanwhile my other dear son is babbling (in his sweetest little voice) about a scooter he wants for Christmas. By this time I have heard about the scooter a dozen times in less than 24 hours. I’m fairly exhausted from the previous nights wompus with diabetes and I tell him so. I did this without thinking. I didn’t do it in an angry voice. I was sure to say “I’m sorry Middles I just can’t focus on the scooter right now because blah blah blah Im exhausted I didn’t get much rest can we talk later?” Middles understood and all was well, right?

No.

Sugarboy heard it all. He sat with his toast hanging limp in his hand half way to his mouth with a tear rolling down his cheek. He looked crushed.

He wiped his little tear, put down his toast and announced that he will stay up next time so I can go to bed.

Did you hear my heart break? I’m fairly certain it shattered on the floor.

I told him it wasn’t his fault. I told him diabetes is stupid. I told him I had things to do anyway. I told him I would nap later. I told him its not a big deal. I even lied and whispered to him that I was exaggerating because I didn’t want to hear more about a scooter. I told him anything I could think of to take the sadness and guilt off him.

So the moral – some unsolicited advice for other Dmoms and Ddads out there – be careful what you say in front of your little ones in regards to the hard times WE have helping manage diabetes. As much as we hurt for them they hurt for us. They see all we do, all we give up, how tired WE are and it makes them sad and makes them feel guilty. They have enough to worry about. We do this for them but they shouldn’t have to hear about it. They already know and if they don’t recognize it now they will when they grow and leave and have to spend a lifetime doing it for themselves. Just my two cents.

I love this kid.

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Snorks and Demons Be Damned

It’s been awhile.

I’ve not posted.

That could mean a lot of things.

It could mean that nothing has gone wrong.

It could mean no one has required me to put on big girl panties.

It could mean that life is too busy being awesome for me to take the time to share.

It is all of these above and for that, I am thankful.

Of course we have experienced some bad pump sites (infusion sites where insulin pump infuses insulin into the body). It happens. We change sites, correct highs and move on.

We have also had some yucky low blood sugars – in all three kids. They drink juice, eat a fruit roll up and tell me they are STARVING for 15 minutes but again we move on.

Just another month with our unwanted house guest that refuses to leave, occasionally puts its feet on our coffee table (we don’t actually have a coffee table – technically its an ottoman but saying ‘puts its feet on our ottoman’ really doesn’t cause the visual cringe like a coffee table image does), it makes a ruckus at night, it messes with the kids homework like a poorly trained dog, and in general gets annoying.

That is until last night. My littlest, my Sugarboy was 268 at bedtime which meant no cookie. For those not overly familiar with type 1 diabetes – normally he can have a cookie and take insulin but when he is already high I turn into the soup nazi and its “no cookie for you” only I say it with a hug and an apology. We dosed insulin, read stories and kissed good night. He was tired and his head hurt from the high blood sugar and I was sad for my son.

I plugged into my phone, hit play and listened to Percy Jackson battle a number of monsters in a labyrinth while I tidied up the kitchen, folded laundry and moped a floor. An hour later I was relaxing on the couch with my new John Irving book. An hour after that I checked blood sugars.

Kid #1 – all good.

Kid #2 – right as rain.

Kid #3 – Sugarboy – not so much, lower than he was before bed but not by much. I figured it was a stubborn high, dosed more insulin and returned to my comfy couch. Too sleepy to read I caught up on Big Bang Theory (oh that silly Sheldon), Modern Family (glad I’m not the Cam of the family), and Two and a Half Men (mmm Ashton).

At this point it is after 1am and I am fighting exhaustion myself. I check the boy. He is now higher than he was before bed. Insert a number of expletives here also insert a new infusion site. Luckily my boy did not wake up when I put a new infusion site on his backside, despite the needle that shoots through the skin to leave the flexible canula behind. When he has high blood sugars he sleeps more soundly than normal. His body is just exhausted from the additional glucose coursing through him and very likely some ketones (ketones are toxins produced when the body burns fat and fatty acids for fuel because it doesn’t have enough glucose available – the irony is the glucose is there for people with diabetes but the body is lacking the magic key (insulin) needed to use the glucose). Dose insulin. Kiss his forehead. Kiss his little hand that hugs his pillow and say a little wish that all will be well.

I set my alarm for 3am. I don’t always do a 3am check but with a new infusion site, high blood sugars and a large dose of insulin to correct a high blood sugar I do need to recheck him.

Fast forward to 6:05am when my normal alarm goes off. Great song playing ‘Demons’ by Imagine Dragons. It’s kind of a dark song but has a catchy tune and I take the lyrics as a warning not to let my demons rule my days. Sorry – digressed.

Demons – In case you don’t know the song.

As the song played on I realized I didn’t hear my 3am alarm. This is the scene where I leap from bed and down the hall in less than a blink of an eye. Crash into the boys room and pause for a half second to watch his chest rise and fall. He is alive. I didn’t overdose him with insulin. (Just FYI – I am not the only parent who watches for the rise and fall of a child’s chest when the child has Type 1 diabetes – trust me on that.)

I check his blood sugar. Insert more expletives. His blood sugar 468. He wakes up, tells me his head hurts, tells me his chest hurts, tells me his stomach hurts. Then he goes potty – you know that scene in Austin Powers  – the Wiz – yea it was like that.

Don’t know the scene – click here >>> The Wiz

I tell him about the late night highs and the new infusion site. I tell him it likely failed.

He took the one I put in at 1am off – thankfully without much complaint. Sometimes those suckers stick on pretty good and removing them can be as uncomfortable as getting a new one.

The reason the new site and correction dose of insulin at 1am didn’t work.

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Friggen snorks. Shakes fist in air.

The infusion set I put in at 1am didn’t take. The canula (flexible tube that stays under his skin) bent and therefore was not infusing insulin into his body. We here in the diabetes world call that a snork. (remember the cartoon with odd sea creatures with the bent snork on their heads – google it if you don’t and don’t be fooled by their cuteness – they are pesky little a**holes).

Put on a new infusion set and dosed insulin. Checked ketones – LARGE. He ate toast and a yogurt (yes he was high but the only way to clear ketones is to eat carbs, dose insulin and drink lots and lots of water).

His blood sugar at 9am – 270. He was going down which meant the new infusion site was working. Still had a long way to go plus he still had moderate ketones.

He stayed home from school. It wouldn’t have been safe to send him to school with a severe high blood sugar, large ketones and a wallop of an insulin dose. Not to mention he felt miserable.

It’s eleven now. His sugars are down to 180. Ketones are small. He is still home playing xbox and relaxing. I’ll let him veg the rest of the day – he’s earned it.

Meanwhile I was writing this in an attempt to clear my head and keep the demons (anger, frustration, fear) at bay. I like it better when I don’t have much to say. Take time to hug a diabetic today.

PS. was not my intention to rhyme so much – clearly I’m feeling lyrical.

Oh – He Had It Bad

Contrary to what John Q. Public believes there are no levels of severity with Diabetes.

Wearing an insulin pump does not mean the pwd has it worse than another pwd.

Last night was Back To School night at my sons middle school. It isn’t really a time to meet the teachers and have a conference. Parents walk their child’s schedule and sit for 10 minutes in each class learning about what their child will do in class, class rules, and a bit about the teacher in the class. Then the bell rings and we have 4 minutes to get to the next class on our child’s schedule. The evening does not allow for chit chat between parents and teachers. Still…

My Middles is new to middle school and new to HAVING diabetes. Not so much new to diabetes as it has been living with us for over 7 years. Living around diabetes and living with diabetes are two totally different experiences. Sure Middles understands what diabetes is and mostly how to care for himself but he is still a bit green when it comes to understanding what all his numbers mean and what course of action to take depending on his schedule and what his numbers are.

For example, heading into PE with a 73 is not necessarily ok without eating a small snack first. Or finding a 49 on the meter, eating a fruit roll-up but not telling anyone that his blood sugar is low is not ideal.

Middles is not taking fast acting insulin yet. He is taking long acting in the morning which has helped his post meal sugars and fasting sugars stay within range but it has also dropped him below 70 more than a few times.

He and I are working together to help him understand the importance of checking often and recognizing what his body is telling him as well as who to tell if his sugars dip below 70.

Going back to Back To School Night – I didn’t introduce myself or chat with all his teachers. Just one. An important one.

It’s only the end of the 3rd week of school. Each teacher has over 200 students a day so it isn’t likely that they know all their students. Yet I was surprised when this teacher didn’t know who my son was or that he had diabetes. I was assured by the counselor that they all received medical information about my son. We haven’t written an official 504 yet but I have shared information with each of his teachers via email. Still this teacher had no idea who my son was. I explained he had diabetes and the activities in the class could cause him to experience a low blood sugar. The teacher assured me that he keeps glucose tabs for all his students with diabetes. Then he said this…

“I had this one student that had it really bad. Had to wear an insulin pump and everything.”

Heart sank. Blood boiled. Tried not to make eye contact. Tried not to grab the very large man by the shirt and shake the crap outta him while screaming – “Insulin doesn’t mean BAD”

The bell rang and I was going to be late getting to the next class so I simply invited him to the 504 meeting on the 24th. He said he was required to be at the meeting (he did this with a grimace).

I get that the general public doesn’t understand diabetes. I didn’t understand it before Sugarboy was diagnosed. I get that main stream media doesn’t do a great job of helping others understand diabetes. I see magazines at the check out that say “Reverse your diabetes now”, “Avoid insulin if you’re diabetic”, “Diabetic friendly recipes”, etc. – it saddens me that there is so much misinformation shared in commercials, news stories, sitcoms, and on the internet.

It is why I write on this blog, why I share other blogs, why I normally would stop and school people who have been mislead. It’s why I carry a touch to enlighten people or beat them with it.

If you have a child with diabetes and are unsure if your child’s teacher understands diabetes consider copying the following and sharing it with your child’s teachers. The notes I sent obviously included my children’s names. Changed here for safety and put in Bold to help identify where you would insert your child’s name.

I sent this to all of my kids teachers the first day of school. For Sweetstuff and Sugarboy I said that their current 504 plans are in effect until a new plan is written. For Middles I explained that a 504 meeting would be held soon.

What is (or will be) in the 504.

  • Unrestricted access to restrooms without penalty or undue attention
  • Unrestricted access to water (she will have a water bottle with her at all times)
  • Unrestricted access to fast acting carbohydrates to treat low blood sugars (she will carry fast carbs with her)
  • Unrestricted access to her glucometer and diabetes supplies (she will have these on her at all times)
  • The authority to check her blood sugar in class at regular scheduled times and as necessary if she feels high/low.
  • Authority to use her cell phone to text me her blood sugar numbers and ask for advice as to how to treat a low or high blood sugar. She has been instructed to keep her phone on silent at all times and not to use her phone for any purpose other than to text me.
  • Guidelines related to when Sweetstuff can participate in an exam. Meaning if her blood sugars are too high/low prior to the start of an exam she will have to wait to take the exam without penalty. We make every effort to ensure Sweetstuff is within range at all times but diabetes doesn’t always play fair. High and Low blood sugars cause her brain to be less efficient. Highs can make her thought process cloudy and cause severe headaches; low blood sugars would be similar to being intoxicated.
  • Sweetstuff will not be allowed to participate in PE if her blood sugars are in an unsafe range – extreme physical activity can lower blood sugars rapidly so his blood sugar needs to be at a safe level prior to PE to avoid severe lows which can result in seizures and unconsciousness. Extreme high blood sugars often cause the body to produce ketones. Ketones combined with extreme physical activity can result in swelling in the brain. I am sharing this with all teachers because occasionally teachers of all subjects are very creative and could include physical activities to teach a lesson so it is important to be aware of Sweetstuff’s need to check blood sugars prior to participating.
  • If Sweetstuff is experiencing a severe low blood sugar (<70) she should not be left alone. If her blood sugar is above 60 but below 70 she can be escorted to the health office to treat the low blood sugar. If below 60 she will need to treat the low blood sugar with fast carbs before leaving the classroom and being escorted to the health office.
  • I will attend field trips or if I am unavailable the school will send the district nurse or other qualified staff to assist with insulin dosage. I am happy to act as a chaperone during the field trips if needed. It would be very helpful to know the possible dates of field trips so I can plan to be available.
  • There will be (likely are already due to other diabetics in the school) staff trained on emergency glucagon. It is similar to an epi-pen but for diabetics experiencing a severe low blood sugar who have already begun to have seizures or have fallen unconscious.

 Forgive me if you are familiar with Type 1 diabetes but I am sharing a few basic facts in case you would like to understand more about Type 1 Diabetes. (Included this note as an FYI for all teachers)

  • Type 1 diabetes is an autoimmune disease. The body’s own immune system decides to attack the insulin producing cells in the pancreas leaving people with Type 1 diabetes insulin dependent for life.
  • People with Type 1 diabetes did not cause it to happen by eating poorly or failing to exercise. (I am not suggesting that other types of diabetes are caused by poor diet or inactivity) 
  • There is no cure for diabetes. Artificial insulin allows people with Type 1 diabetes to stay alive but it is not a cure.
  • People with Type 1 diabetes check their blood sugar by poking their finger to obtain a drop of blood up to 14 times a day.
  • People with Type 1 diabetes must take insulin via syringes or an insulin pump. Those wearing an insulin pump must wear it 24/7.
  • A person with Type 1 diabetes can eat everything everyone else eats – although it doesn’t mean they should any more than it means those without diabetes should be eating unhealthy foods.
  • There are only two things a person with Type 1 diabetes cannot do (at least in the US) – fly a commercial jet and join the US military. Currently there are celebrities, professional athletes, Olympians, Elected Officials, Fire fighters, police officers, and other professionals in all careers fields that live well and find great success despite having Type 1 diabetes.
  • Diabetes is a life threatening disease every day. People with diabetes make dozens of decisions each day regarding food, exercise, and daily chores to effectively manage diabetes.
  • Kids with diabetes, especially in the middle school and high school years can be ashamed or embarrassed by their diabetes. Few kids like to be viewed as ‘different’ and poking oneself multiple times a day, wearing an insulin pump, or injecting insulin via a syringe shines a bright light on kids with diabetes. Developing a management plan that the student is comfortable with is a key component to allowing the student to effectively manage his/her diabetes.

 Symptoms of Low blood sugars

  • Pale skin
  • Sunken eyes
  • Dizzy
  • Shaking
  • Disoriented
  • Extreme hunger
  • Sweating outside of a extreme activity

 Symptoms of High Blood Sugars

  • Extreme thirst
  • Frequent Urination
  • Hunger
  • Headache
  • Body aches
  • Poor/blurred vision
  • Increased frustration in daily tasks

High With A Chance of Ketones

I went to bed at 10pm last night.

All three kids safely within range with no active insulin.

I didn’t set any alarms for night checks, no reason to worry.

This morning I got up made coffee and packed lunches.

Middles got up and took a shower, checked BS (117) and ate breakfast. All was well.

Sugarboy got up, took a shower, checked BS (149) and ate breakfast. All was well.

No sign of Sweetstuff. I went up to get her moving guessing teenage girl ‘sleeping in’ issue. She was curled up still asleep. I nudged her and then poked her finger. As the meter counted down she mumbled “my site fell off”.

Huh? When?

She shrugged. She didn’t know when she just found it dangling.

(The infusion site that normally is stuck to her body that allows her to get a constant insulin drip was not attached.)

BS 418. Crud.

I ask her to get up and check for ketones. To check for ketones (something caused by lack of insulin – not a good thing) one must either pee on a stick or use a ketone meter to test the blood for ketones. We don’t have a ketone meter. She peed on a stick.

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Massive ketones. Not good. Chest hurts, feels nauseated, head hurts, pale.

To clear ketones she needs insulin, STAT. Plus time to start pushing fluids.

New infusion site, new insulin, yogurt consumed.

Moments later Sweetstuff is in the bathroom vomiting.

Call left on attendance line at school – Sweetsuff will be out today.

An hour later still large ketones. Sleepy child. Head hurts. Chest feels better. BS 271

Like me, when her head hurts she desires a hot shower, always makes head feel better.

2 hours later still large ketones. Still sleepy child. Head feels better. BS 201

3 hours later moderate ketones. Child is asleep on the couch. BS171

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Diabetes is stupid.

PS. Dear FDA – please hurry the heck up and approve Dexcom G4 for use with those under 17. Had she been wearing a CGM (continuous glucose monitor) this would be less likely to happen.