what if….?? EMERGENCY strikes

 

As parents we pretty much always see worst case scenarios flash through our brains and try to eliminate disaster before it strikes…

It’s engrained in our thinking to protect our children – from anything and anyone who could cause them harm.

We pad edges of coffee tables and fireplace hearths, we puts gates on stairs, child locks on drawers and toilet seats when they are young… you name it we want to do anything and everything in our power to protect our children from an accident or god forbid worse…

As they get older – they get warnings when rough housing that “someone is going to get hurt” – we want to protect them from cyberbullies, we check ingredients, buy organic, wear mouth guards to protect their teeth – you name it…

 

We do what we can to protect them, shield them, prepare them to make smart choices, advocate for themselves, for their friends and be good members of society… 

 

D parents need to go so much further than that ..

We need to teach our children to keep themselves ALIVE, healthy and thriving..

We have to educate our children – teachers, coaches, family and friends…

 

We teach our kids about blood sugar numbers, high / low symptoms and how to treat them – how to calculate insulin dosages and inject themselves with it. How to adjust for exercise or stress and to carry supplies with them anywhere and everywhere they go – because WHAT IF ?? 

We HAVE to be PREPARED for the worst case scenario because it can and does happen…. Type 1 Diabetes is unpredictable – but you know what – SO IS LIFE….  You never know when an emergency might strike such as a HARD LOCKDOWN at school… meaning your kid is stranded where they are with zero communication and only what they have with them to survive.. 

Today the D community got a wake up call … I got a wake up call… unfortunately this is the day and age we live in – it happens and it is ONE MORE THING we need to be prepared for.. that I need to prepare Eden for just in case…

Here is the story as it unfolded, that I have been given permission from the mother to share – I am so grateful that everything turned out OK and I am sharing in an effort to help further educate .. A lockdown can turn into a very dangerous situation for our D kids – and it isn’t just because there is a crazy maniac on the loose…

This story will protect and save lives in the future – and I will be having Eden carry glucagon with her from here on out.

 

Initial post in T1D Support group this morning....
Initial post in T1D Support group this morning…. HUNDREDS of us were waiting, offering support and watching for updates… 

 

 

 

 

another D mom posted this picture as a piece of advice for other parents..

what is it? you might ask…

starburst – starburst, taped to the bottom of a desk in case of a hard lockdown during school hours..

Eden has supplies in every classroom – but it never dawned on me that she might be stuck UNDER her desk unable to move for hours on end in a hard lockdown scenario…

 

 

 

HOURS LATER we get this update…. 

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SCARY?!?!

Our school medical plan states that in an emergency situation Eden will be taken care of… In a HARD LOCKDOWN this cannot happen…..

Her 12 year old son is clearly a CRAZY AMAZING KID …… and his parents deserve major kudos too… they were PREPARED – they PREPARED HIM –  and the most impressive thing – he was only diagnosed 7 months ago…

 

 

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Extra, Extra – read all about it ….

 

I have some VERY EXCITING news to report!

Eden is a MIRACLE…

Or at least that is what I was told today

 

I have heard some CRAZY things over the past 5 years in relation to D.. People seem obliged to tell you about their uncle who lost their legs or grandma who died or whoever that exercised and no longer has Diabetes..

 

Today’s claim took the cake..

 

Eden is participating in a week long basketball camp. Many of the coaches are used to the fact that I stick around all day to help monitor Eden and manage her D care. VERY few parents stick around all day – and the ones that do are watching little ones.

Do I care – not really – I do what I have to do in order to keep Eden safe and healthy.

Today there was one mother who saw me run up to Eden and grab her insulin pump. She asked me if she was my daughter, what it was and a conversation was started.

The VERY FIRST thing she said to me when I explained Eden had Type 1 Diabetes was –

 

“Have you considered minerals?”

My first thought – Oh, boy – here we go..

 

I went on to explain a little about T1D, that is was actually an auto immune disease and unfortunately minerals were NOT going to help Eden’s diabetes go away. I explained how hard it was to manage on a daily basis, that exercise made it even harder to manage that was why I was there and that I was actually wearing a watch that enabled me to view her blood sugar levels.. I showed her the watch and at the time Eden’s blood sugar was 345 – she looked at me and said “That is very HIGH” – so she clearly had some concept about blood sugar levels..

Yup – in the next sentence she said she was borderline Diabetic and has been using alternative therapy and minerals that were helping her and we should really try it.

 

I was trying SO HARD to resist the urge to walk away but continued to educate her on the facts of T1D.

She then asked me if I was spiritual ..

After a few more minutes of conversation she asked me Eden’s name and said that Eden was a miracle.

She continued on to say that she was very spiritual and she knew that Eden was a MIRACLE, was going to wake up, be completely cured and that documentaries will be filmed about her.

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I wasn’t sure whether to laugh or cry..

I’m pretty sure if I stuck around she would have been trying to sell me her miracle cure..

Sometimes you can educate, educate, educate and you are just wasting your breath…

I tried, I really did – but some people just don’t want to know..

fighting to live – literally…

 

Last night is a night I won’t forget for a while..

A very typical Sunday night for us. A busy weekend of basketball tournaments followed by 2.5 hrs of skills clinic in the evening.

It was a GREAT weekend of basketball – we were all pretty happy and maybe a little bit too cocky – telling D to “take that!

WOOHOO – Way to go Teams!

 

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Yeah – guess D didn’t like that very much… 😔

6 games of basketball in 2 days is a LOT of hard work and exercise for anyone – let alone trying to manage Type 1 Diabetes and the effect it has on Eden’s body.

 

But we do it – and we do it often

Because she LOVES basketball and T1D shouldn’t stop her from doing ANYTHING…

 

4 of the games were on Saturday – 3 were back to back – with little to zero break in between games – I brought extra sugar thinking her blood sugar would run low – but of course adrenaline took care of that and she ran high all afternoon..

Totally expecting a crash on Saturday night – I changed basal rates so she would get less insulin before going to bed and she ate a late night snack with ZERO insulin to help keep her blood sugar up and stable..

Well, the crash never happened on Saturday night as expected??? 

In fact, her blood sugar remained high and never dropped below 200 – waking up high on Sunday too..

I was too over cautious every time I checked on her overnight to give her extra insulin because I was SURE the crash was coming..

but it didn’t….

Until LAST night…

Her Dex transmitter came out of her arm right before we were leaving the house for her evening basketball clinic. I INSISTED that we re-insert before we left because it takes 2 full hours to “warm up” and calibrate – so we are completely blind to what her blood sugars are doing for 2 hours (except by doing a finger prick)

testing during clinic and she was great – perfectly in range..

After practice – as usual – her blood sugar was high due to adrenaline

Eden was going to eat something when she got home – so gave herself insulin and was going to come home, eat and not dose for the food she ate.

 

great plan – but it didn’t really work out..

 

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You can see where she tested and calibrated (2 red dots) in the car on the way home from basketball clinic..

She came down slowly and then I could tell she was starting to tank at 9.15pm right before she went to bed..

She had a juice – I turned down the basal rates to limit how much insulin she would get for the next 2 hours and waited..

That wait literally turned into all night long as her blood sugar refused to rise

 

Every time I tried to wake her to eat or drink something she became more and more combative. 😢

 

She was flailing arms, screaming at me and telling me to go away, clenching her mouth shut and down right REFUSING to eat or drink.. She was not herself – she was not fully awake, had her eyes closed the entire time and has never behaved this way and to this extent before

It went on for hours…… and hours and hours…

She would take a little juice here and little glucose gel there but it was NOT easy – she wanted NOTHING to do with it..

Her blood sugar would start to rise and then slam right back down again..

 

 

I was absolutely beside myself.. scared, mad, exhausted and about ready to scream for D-dad to forcibly hold her down so we could get sugar into her mouth..

I had the Glucagon film reel playing in my head – ready to use it – thinking there might be no other option

At about 1.30am it looked like I could finally go to bed and close my eyes – I set my alarm for 2 hours later and woke up to her being in the RED zone AGAIN…

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OMG… 

We have had MANY very stubborn low blood sugars lately and I have NO IDEA why… nothing has changed and I have lowered her overnight insulin rates.

This is part of Type 1 Diabetes that people DO NOT SEE… DO NOT UNDERSTAND..

It is so scary and dangerous.. I was literally fighting with Eden to keep her alive last night..

She slept though every single beeping alarm of her Dexcom to warn her – if she had started to crash after I had gone to sleep – I wouldn’t have checked on her for 2 hours… that could have been 2 hours TOO LATE…

Eden woke up tired, with her blood sugar in range and with absolutely NO RECOLLECTION of what had transpired and went to school just like it was any other day.. looking and acting perfectly healthy and normal

The Type 1 Diabetic life is beyond normal – but it is OUR normal

Technology Dance…

Technology is our best friend – until it isn’t…

We are SO reliant on technology to keep Eden alive, safe and healthy that when it isn’t functioning it just adds stress.

People have so many electronic gadgets in their regular day to day lives – but add in Type 1 Diabetes and we have a LOT more gadgets that do very important things!

here is the BASIC rundown of what we rely on daily

  • Insulin Pump – yeah – quite obviously the top of the list – this baby literally keeps Eden ALIVE
  • Blood Glucose Meter – wirelessly transmits her blood sugar value to her pump
  • Dexcom CGM (continuous glucose monitor) – this is a 2 part piece of equipment.
    • sensor – inserted into her arm (or other body part) that transmits blood sugar reading to receiver
    • receiver – that displays the data in number and graph form
  • Nightscout Rig – this is Eden’s setup for enabling D-dad and I to remotely view the Dexcom data
    • consists of a phone and a Dexcom receiver – hooked together with a cable – that must be within 20-30 feet of Eden’s body (the sensor in her body) to be able to transmit data
  • Pebble Smartwatch – Eden’s Nightscout Rig – transmits data to the “cloud” – which we pull down with our personal cell phones and then use bluetooth technology to pair with the Pebble so we can then see the data

 

amazed yet?

As I mentioned – very basic rundown on the Nightscout process which was a complicated multi-step process to set up…

These gadgets take batteries and specific cables, need to be charged regularly and Dexcom needs to be calibrated with a blood sugar reading every 12 hours to help maintain accuracy.

We have gotten into somewhat of a routine where we have 2 Rig phones so that we can have one charging and one in use at all times and 2 Dexcom receivers so we can have one attached to the Rig and one for Eden to use and refer to throughout the day.

We try to calibrate in the morning before school and at night before bed – but you aren’t supposed to calibrate unless your blood sugar is stable (not rising or falling) – which is not always easy

We have a backup of batteries and cables up the wazoo – some gadgets warn when the battery is getting low – some things just stop working (blood glucose meter)

For the Nightscout Rig to transmit we also have to rely on phone/wifi/internet connection..

The past 3 days this carefully orchestrated technology “dance” has failed us – a number of things have gone wrong and it takes time to figure it out – time when Eden is at school that is hard for her to give…. 

 

Tuesday – she was high after PE but her blood sugar check and Dex were not accurate and in sync. Eden’s blood sugar was reading high pretty much ALL day – I lost data connection and stopped receiving data just after lunch and she was 320..  next thing I know she is texting me right before track practice – an hour later and she was only 62.. not good.. and I couldn’t see what was happening..

what does that mean?

D-mom drives to the school, sits in the car and observes track practice from a distance – her coach is nervous about the whole D thing and takes it very seriously (YAY coach!) but he thinks I am monitoring remotely and will alert him before anything becomes an issue. I can’t tell if there is going to be an issue – don’t want to freak him out by sending him a text message so I sit there – just in case.

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Wednesday – Rig stopped transmitting data 1 hour into school day and we did NOT have data for well over 6 hours. Do I need to see Eden’s blood sugar every minute of every day? NO – but it is VERY helpful and in the instance of the afternoon before would have given a warning that she was dropping too quickly. This day she was high, high, high… She had a track meet straight after school and I was very concerned as to whether or not she should even run – whether I needed to replace her pump site – whether she had ketones or if I needed to come give her a shot…

 

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Thursday – today… 

in the middle of PE class I receive a text that the Dex sensor came out of her arm… DANG IT… so we will have no data AT ALL – AGAIN – all day today..

 

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they say things happen in 3’s, right?

 

so grateful for technology and the devices we have – but not too happy with it right now!

It matters…

Some days Type 1 Diabetes really pushes me to the edge..

 

The outermost limits of my sanity – frustration – exhaustion and worry

 

I really can’t even describe in words what a pain in the butt this disease is to live with day after day after day and the deep impact it has on my life.

 

today has been one of those What the Heck kinda Diabetes days..

one that made me really think and ponder

 

I haven’t been keeping up with my blogging anywhere near as much as I would like to

trust me – I still have a lot to say on this darn disease

 

story quote

 

  • Some days it is just hard to write
  • Some days I desperately want to write – to vent – to complain – but know it doesn’t really do much good and don’t want to come across as permanently negative
  • Some days I want to brag because of the smallest, littlest accomplishment we might have had – or scream from the rooftops at how proud I am of Eden
  • Some days I feel like I am just MAD – mad at her and the blasé attitude she has about her management or mad at myself for being so hard on her
  • Some days I wonder if writing is really even worth it and whether I should even bother – is it even making a difference?

 

As her mother – I want Eden to live in the here and now – I want her to be a kid and have fun and freedom and not feel limited by her disease or have a care in the world…

but she does…

She has a disease than requires vigilance and maintenance CONSTANTLY.

It’s hard to not constantly nag and ask questions to ensure that the correct things are being done to maintain her health.

What she does now has immediate consequences as well as consequences that can affect her entire future in terms of complications.

It’s hard telling my perspective as a mother of an almost teen T1D without sometimes wanting to throw her under the bus out of pure frustration. I have to remind myself she is a kid – a great kid – doing the best she can.

Normal teen attitude and behaviors mixed with a life threatening and complex chronic illness test me every single day in ways I never could have possibly imagined. Putting that into words the general public might understand is difficult.

 

carry quote

 

Some days it makes me want to run away and hide and just give up.

But I can’t and she can’t..

We are stuck here in this crazy roller coaster of a life and doing the absolute best we can and I have to remind myself of the purpose of writing in the first place.

  • to educate people
  • to help people understand our life
  • to shed some light on the disease that is Type 1 Diabetes
  • to let others who might be in the same boat feel like they are not alone

 

quitting quote

 

almost every day this week I have been approached either in person or contacted online by someone who has read and been touched by me sharing our story.. not once, not twice, but at least 5 times – just this week

sharing their own personal stories – expressing their amazement at what we deal with and showing a true desire to know and learn more about Type 1 Diabetes.

 

I guess that means what I am doing is working.

 

it gives me hope – it makes me want to continue sharing – even if it might be less often than the past

people are learning and do care and I am honored and humbled that they have reached out to me. 💙💙

 

please keep reading –

please keep commenting and sharing so that we can continue to educate the public one person at a time.

it matters and it is making a difference… 

 

the good, the bad and the ugly..

 

In the D world – it pretty much all boils down to blood sugar numbers

 

good = in range 

bad = low

ugly = way high 

 

On the Dex graph

 

white – in range – you are AWESOME !

yellow – HIGH – warning, warning – need insulin!

red – LOW – danger! need sugar NOW!

 

we have certainly had our fair share of ALL of the above lately

I have tweaked and tweaked insulin settings and gotten them to be pretty darn good at certain times of the day.

 

problem is – that was for a “normal” day

but what the heck is normal anyway? in this case  – a non-school, spring break kinda day.

 

In the D world – even if you kept the exact same schedule and ate the exact same foods every day for a week you would get different results..

now that we are in the second week of our back to school routine it appears my tweaking may have gone a little too far

 

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– or she exerted herself more than usual in PE today

– or had a smaller mid-morning snack

– or the 6 basketball games and 2.5hrs of clinic over the weekend finally caught up with her

– or the sky is blue 😉

 

oh – but on the plus side – I was a big girl D-mom and resisted the GIANT torturous urge to call the school as I watched her redline it during the school day.. letting her take control and do her thing.

 

IT WAS HARD

she survived.

I survived.

but I’m ready for a glass of wine…

Oh boy… what a way to start the day

 

This is what you get when you “rage” bolus in the wee hours of the morning… a guilt producing, scary low blood sugar reading that you, the parent caused. 😢

 

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Multiple, multiple times every single day we make medical decisions that affect Eden’s life.

We do the very best we can to act like her non-functioning pancreas but we make mistakes, we are not perfect and Type 1 Diabetes is unpredictable and stupid.

 

the backstory…

Last night Eden had basketball practice – as typical LATELY – her blood sugar starts off fine and then adrenaline kicks in and she skyrockets mid practice. I have experimented with giving her extra insulin before practice to counterbalance the high that is coming – but that in itself is very risky. Exercise typically causes a DROP in blood sugar, so additional insulin upfront could have BAD consequences. Adrenaline highs usually correct themselves over a period of hours after her body recovers and her blood sugar levels out.

I say USUALLY…

Because over the past few months, everything that we had become accustomed to her body doing has changed. Her body is changing and so are her insulin needs and how it reacts.

 

We change Eden’s insulin pump site every 2-3 days.

We fill the reservoir in the pump that holds the insulin with 2-3 days worth of insulin. (mind you she doesn’t use the same amount daily) The insulin only stays stable for that length of time due to body and outside temperatures and we also need to rotate the location of the cannula under her skin. The longer the cannula stays under the skin in one place, the poorer the adsorption, the greater risk for bacteria entering her body and the development of scar tissue. The longer the insulin stays in the reservoir, the more it breaks down and is less effective in controlling her blood sugars.

Eden does not particularly like having her site changed. Honestly, I really can’t blame her – its a big needle that we have to insert into her body and I hate having to do it – but it is a necessary evil.

I mark on my calendar the 2 day mark and check in with her on how much insulin she has remaining so that she doesn’t run out, consider how stable her numbers are and go from there. Yesterday was day 3 and her site needed to be changed but she still had plenty of insulin left to get through the night after practice so I opted to put it off and do it in the morning – putting off inflicting pain on my child and wanting to use every precious drop of the liquid gold she had remaining in her pump.

 

8.40pm :

Her blood sugar after practice was high – not unusual – and not as high as it has been getting

 

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A fairly typical reading of late – she gave herself a correction dose of insulin to bring it down and I watched Dex closely over the next couple of hours.

10.30pm:

Bedtime for me and Dex showed she had come down consistently – not too quickly – and leveled off in the 200’s.. I was totally happy with that knowing that she would continue to drop on her own.

12.00am:

What I did NOT expect was at her next check that her Dexcom reading would be WAY off  – showing a reading in the mid 200’s when a finger prick was actually 395 😒

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YIKES…

SO – I give her another correction dose of insulin using her pump and stumble back to bed.

Restless – I continue to check Dex consistently over the next few hours – waiting for it to catch up and display an accurate blood sugar number. Dex still showing in the 200’s..

3.20am:

Get up again and do another finger prick… 302

UGH… another correction with her pump.

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Back to bed – I fall asleep for 30 mins or so and it dawns on me… HER PUMP SITE IS NOT WORKING.

Fed up and exhausted – I get BACK OUT OF BED – head to the supply cupboard – get a syringe – go to the fridge and get the insulin. I draw out insulin for the correction I am convinced she just didn’t receive and an extra unit to make up for the basal insulin she wasn’t going to be getting..

I take the insulin and I inject it into her arm and head back to bed.

2 hours later and I am awoken by D-dad getting up and ready for work. I look at my wrist and it says Eden’s blood sugar is 85 with an arrow down… I thought to myself – well, it probably isn’t accurate – it has been off all night – fighting the need to get up.

5.45am:

Get out of bed AGAIN to test Eden.

Finger prick 85…

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SPOT ON – COMPLETELY ACCURATE and MATCHING DEX

SAY WHAT ?!

Well, I guess my day has now officially started.. 85 is on the low end and thanks to Dex it shows, still dropping. Given the fact it is Spring Break and she will be in bed for a few more hours – too low for my liking..  Within minutes, my wrist is vibrating and she drops to 74 – head to her room – wake her up to eat some sugar. I watch and wait – she drops into the 60’s – head back to her room – wake her again and make her eat some more..

and that, my friends is how we ended up at a lovely blood sugar reading of 52 this morning.

Fed up with a blood sugar that would not come down, frustrated with an inaccurate reading from Dex that we rely heavily on and mad at myself that I didn’t just change her site before bed and just wanting to SLEEP.

I, her mother, gave her a dose of insulin that caused a dangerous low blood sugar..

To be fair – we will never actually know whether it was the exercise finally catching up with Eden or the dose of insulin I gave her that caused it. Her Dex could have been accurate the entire time and she could have had residue on her fingers causing an inaccurate finger prick. It could have been a combination of all of those things and/or her site could have been functioning just fine and we were only dealing with a stubborn high??

no way to know whether it was my fault or not… But I am her mother and I am in charge of keeping her ALIVE during the overnight hours.. the guilty feelings will ALWAYS creep in – even though we do the very best we can with what we have…

 

So – not only did I save my child’s life today – I could easily have taken it away..

It could have been MUCH worse and those thoughts will plague me today… a hard thing to swallow for sure but I cannot dwell on it too long.. 

It is our life – walking that tightrope every.single.day. and some days we fall off..

But we bounce back and do it all over again because we have no other choice.

THAT is the Type 1 Diabetes life.. 

 

WE NEED A CURE…