Dear Coach …. please keep my kid alive

It’s that time of year again…

Basketball season 💗🏀😳

 

I have a LOVE/HATE relationship with it… mostly LOVE…

I LOVE the game – and even more so, I LOVE watching my girl play the game, do what she does best and loves with all her heart.

 

But – I HATE it because it causes me stress .. lots of stress

 

This year is the first year Eden will play basketball for her school – she has played other sports – but basketball is just different.. it impacts her body differently and I KNOW my child will NOT stop, take a break, check her blood sugar or sit out for one minute if she doesn’t have to, because she loves the game so much.

 

Eden had her first official “tryout/practice” yesterday.. I made all the previous arrangements with the school to be sure the new coach would be sufficiently glucagon trained for a Type 1 Diabetes emergency – which was done right before the session.

At the end of practice I approached him and introduced myself and said I was “Eden’s mom” …

his response – WHICH one is Eden?

Yup – slight internal FREAK OUT from me.. In my head – you mean, the emergency training you just had and the kid you just learned has a life threatening condition and are supposed to ensure is SAFE and you don’t even KNOW WHO SHE IS ?!?!

 

Calm down – momma bear.. calm down…

 

Resume conversation – question him on glucagon training to ensure it took place – get a very off hand – “oh yea, the insulin thing” response..  I’m sure I had a look of pure horror on my face ..

 

I honestly can’t even remember exactly how the conversation went from there – I probably rambled – he had a deer in headlights look – and I handed him my cell phone number and email address and said I would send him additional information and guidelines that needed to be followed..

 

Yes – Eden is in Middle School and for the most part can manage the majority of her T1D care.. I’m SURE I sounded like an over bearing, over protective momma – BUT – exercise is a different animal all together – basketball is different – AND I KNOW MY KID…  and I am entrusting a COMPLETE stranger – who clearly knows nothing about her medical condition – or even what she looks like to keep her SAFE..

 

… insert major stress here … 😳

 

Type 1 Diabetes is SO unpredictable… you just NEVER know what will happen especially when exercising..

 

prime example – last night..

 

Eden has her first real “coaching job” – she was asked to be assistant coach to a 3rd/4th grade rec team.. SO EXCITING! She insisted that I didn’t need to stay and I could drop her off because she wouldn’t technically be exercising… I did think about it, but being her first time I wanted to see her in action! 😃

We had an early dinner and on the way there her blood sugar was trending low and she still had a LOT of active insulin that would lower it further… It was a fairly heavy dinner and I was pretty confident that her blood sugar would rise substantially to counteract the insulin and told her she needed to keep her insulin pump ON (she usually takes off for basketball) and did not give her any additional sugar..

As practice begins, her blood sugar starts to drop and hover at a pretty low level – within less than 30 minutes we were pulling her from the court – giving her glucose gel and taking her pump off so she wouldn’t get any additional insulin… (her Dex read BELOW 55) Because we were alerted by her CGM and watching what was happening disaster was averted. Her blood sugar was falling rapidly and Eden had NO CLUE her blood sugar was tanking…

This is what makes me SO NERVOUS – and she wasn’t even “exercising”…

 

fast forward to this morning and my “dear coach – please keep my kid alive” email below…

overboard? maybe …

necessary? I certainly think so..

I tried to keep it as concise and to the point as necessary – unless you live the T1D life – you just DO NOT realize how serious this can get and HOW QUICKLY it can get there… He needs to know it is serious .. and not just a blasé – “oh yea, the insulin thing”.

 

Yes – I need to find the strength to let go and have Eden take the reins – but as I said before – I KNOW MY KID… She has put her life in jeopardy one TOO MANY times when left in control in the past.. She is just not there yet and neither am I.

 

As discussed – below is some additional info in relation to Eden’s Type 1 Diabetes…

I am unsure exactly what Nurse XXX covered besides what to do in an emergency situation – obviously we need / want to prevent it ever getting that serious!

Type 1 Diabetes is an incurable AUTOIMMUNE condition – where her body attacked and destroyed the insulin producing cells in her pancreas. Not to be confused with Type 2 – nothing she did or didn’t do caused it and it is not due to a lack of exercise or poor eating habits. A healthy pancreas automatically secretes the appropriate amount of insulin and balances/maintains a healthy blood glucose level. Eden’s body DOES NOT produce any insulin naturally so we need to give it externally and monitor her blood sugar extremely closely 24 HOURS A DAY – EVERY DAY..

Eden wears an insulin pump to infuse her insulin and will take it off for basketball, she also wears a CGM (continuous glucose monitor) on her arm which takes a blood sugar reading every 5 minutes.

Basically a “perfect” healthy range for Eden’s blood sugar is around 100-120 .. to get it to this level and keep it there is VERY difficult and a daily struggle.

HIGH blood sugar = requires insulin
LOW blood sugar = requires sugar

Anything below 70-80 is considered “low” and bordering dangerous for basketball – exercise will usually cause her blood sugar to drop further so she needs instant sugar to bring it up to a safer level (juice / glucose tabs / fruit gummies in the box I gave you) anything lower than 70 and she should technically sit out for a few minutes and then re-test her blood sugar to be sure it is coming back up. Usually she is able to eat something quickly and get right back at it but she DOES NOT always feel her blood sugar dropping and it can happen very rapidly when exercising even if she starts at a “perfect” blood sugar level. Low blood sugar is much more immediately dangerous than high as her brain and body need the sugar to function and survive and it can be immediately life threatening. She could collapse, have a seizure and pass out if too low – thus the glucagon training you had. Her fast acting sugar and glucagon need to be readily accessible at all times.

We prefer her to be in the high 100’s for basketball – that gives her a good cushion in case she drops. Starting there – not always so easy. On the flip side – if she is 300 or over – she CANNOT participate until her blood sugar levels start to come down.

Eden will be responsible for checking her blood sugar prior to practice and notifying me. I will have her communicate that number to you – please text me – so that we can cross check and know she is good to participate.

The problem with starting to exercise when her blood sugar is elevated (250s or higher) is that it usually just continues to rise as her body then feels it is under “stress”. It isn’t immediately dangerous – but she does require insulin to bring blood sugar back into range and you may notice changes in her behavior. Unfortunately high blood sugar causes slow reaction times, a dazed, spacey look and the inability to focus. She is not being disrespectful if not following instructions – she literally cannot process what is being said and it is completely out of her control.
Eden is an extremely athletic kid and has been playing competitive basketball for many years. Type 1 Diabetes does NOT hold her back but it does require constant and diligent management. We are working really hard to try to get Eden to take responsibility for her health – but it is an extremely hard balance to maintain – and even harder when playing basketball because she DOES NOT feel blood sugar changes when she is exercising and does not want to leave the court or be a disruption.

Technically she should check her blood sugar and/or the reading on her CGM device (I attached picture so you know what I am talking about) every 30 minutes. Even keeping this device on the bench would be great – easier for her to check (and yourself if so inclined) and know where her levels are. Thankfully we have wonderful technology that enables us to also view her CGM reading remotely so we can monitor her from afar – but technology is technology and it does not always function or we lose connection.

 

Let me know if you have any questions or concerns ..

Communication will be key to keep Eden safe and ultimately have a great basketball season!

I understand that the 8th grade coach was also glucagon trained – I will have Mr XXX give him this additional information for reference also.

Please be sure to notify me if you are going to be absent from practice so we can ensure Eden will be in safe hands.

Bacon to the rescue – just another Monday living with Type 1 Diabetes…

 

I picked Eden up from school today and it was instant “grumpy” ..

she got in – glanced down and saw the lab paperwork in the center console and knew we were headed to get blood work.

“oh, great, blood work – really?!” ..

yup – sorry kid..

 

I asked her to check her blood sugar – the usual first thing she does as soon as she gets home from school

her response – “oh yeah – my site came out” as she shows me the end of the tubing that SHOULD be attached to her body and infusing the insulin she needs to SURVIVE..

 

huh, well that explains why her blood sugar would be in the 400’s ?!

 

I keep driving until there is a safe place to pull over and get a new infusion set out of her D bag – the kit she carries with her everywhere – and now not only is she going to get blood work, but I am having to jab her with a giant needle on the side of the road..

grumpy silence the entire drive to the lab ..

 

Once there, I WANTED to take pictures (just of her arm mind you) for the benefit of Diabetes Awareness Month, but in her current mood she was having absolutely nothing of it..

 

Blood work completed – USUALLY afterwards she gets a “treat” … maybe a Starbucks or ice cream or something small – just because getting blood work every few months is not something she enjoys but will be a part of her life forever.. in the early years it was probably a bribe and the tradition stuck.

BUT – given the fact that her blood sugar WAS NOT coming down – and the anxiety from the blood draw had actually sent it UP higher there was no possibility of a treat.. 😕

 

As a Type 1 Diabetic SHE CAN eat anything and everything…

the difference is whether or not it is a good idea.

 

At this point in time – I had to say NO.. it was much more important to get her blood sugar back in range first.

 

so now Eden had endured –

• a new site inserted on the side of the road
• bloodwork – 4 vials of blood drawn and a tech who “clicked the thing” as she said – and hurt her
• me saying NO to the treat that she usually gets afterwards
• and being STARVING and not able to eat until her blood sugar comes down a little bit.

 

 

Another example of the stuff people don’t see or realize goes on behind the scenes .. every.single.day.

and aside from being grumpy and me getting the silent treatment for an hour or so- SHE DID NOT COMPLAIN

 

 

A few hours later – her blood sugar is improving and she asked me to make her some bacon..

how could I refuse… ??

BACON TO THE RESCUE ..

Bacon requires no insulin, does not cause an immediate spike in blood sugar and is the stand in “treat” for today – at least it brought a smile to her face

 

just another Monday living with Type 1 Diabetes…

 

making sense out of nonsense

Type 1 Diabetes some days makes absolutely NO SENSE whatsoever…

 

yet – we try to make sense of it anyway – try to put the puzzle pieces together and make good decisions with the information we have..

 

SO MANY things done throughout Eden’s day require a decision – either from her – or from me – in relation to her D management…

 

Eden is of course on the front lines and I am watching from the sidelines – she doesn’t look at the big picture – she often doesn’t even always look at the immediate future or implications that her decisions are making..

 

We have had a VERY ROUGH few days .. unexplained highs, unexplained lows and pretty much a huge roller coaster of blood sugars that just do not want to be managed… her lows have required copius amounts of sugar to bring her up and treating the highs have just brought her crashing back down…

 

24 hour time period of blood sugar craziness

 

It has been very hard to know exactly what to do… The thing is we can do the same thing every day and never get the same result so it is VERY difficult. Trying to teach her, give input and instruction based on previous experiences is ongoing and an every day thing and she doesn’t always want to hear it. Eden is impulsive and quick to push buttons without thinking it through.. and sometimes pushing those buttons (ie: giving herself insulin) can have HUGE consequences…

 

case and point – this happened this morning.. 

 

5.57 am – D-dad was up and tested her just before my alarm went off at 6am.

• BLOOD SUGAR – 89
• YAY – pretty darn good!

 

I got up and was about to jump in the shower when I noticed on my Pebble that her blood sugar was dropping.. I watched and waited a few minutes before heading to her room.

 

6.20am

• BLOOD SUGAR – 61
• grab some fruit pieces – have her eat them and try to get her up for the day

 

 

6.47am 

• try for the 4th time to get her out of bed – tell her she needs to test again BEFORE she gets in the shower
• BLOOD SUGAR – 189

 

 

SAY WHAT ?!?!?!

 

Now EXPERIENCE and thinking about that number – I KNOW that it is very unlikely that her blood sugar jumped that much in 27 minutes.. I ask her to WASH HER HANDS and re-test..

 

She argues with me –  and yells at me ” MOM – I am not low !!! … ”

I stand my ground and she washes her hands and re-tests…

 

6.48am

• BLOOD SUGAR – 48
• yup … just what I thought…

 

 

 

This is not about WHO was right – Because we have to make sense out of nonsense so often and because I was paying close attention – I KNEW that 189 just could not be right..

It also goes to show that this oversight could have had a TERRIBLE OUTCOME..

 

 

A blood sugar of 48 is pretty darn LOW…

• She did NOT feel low… 
• She was about to give herself insulin…
• She was about to go jump in the shower…
• Hot water speeds up the rate of adsorption …

 

NOT GOOD… 

 

If I was not standing RIGHT THERE and she gave herself insulin (by the quick press of a button) when she was actually only 48 – and THEN jumped in the shower ?!?! The fact her blood sugar was still dropping – she would have been in trouble FAST and more than likely started to pass out in the shower.. HOLY MOLY – this is the stuff my nightmares are made of…

 

 

Insulin gives her life every single day –

but it could also take it away in the blink of an eye..

 

 

no rhyme. no reason. T1D life.

let me preface this post by saying…

 

this is not a poor me sob story… just telling it like it is.

this is the life we live dealing with this disease. it is meant to educate the public on the Type 1 Diabetes life. 

this is what people don’t see or understand. 

maybe if more people see it – they will realize just why we so desperately need and want a cure. yesterday.

 

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!

 

 

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..

 

 

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…

 

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

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

 

 

– 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. 😢

 

 

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

 

 

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 😒

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.

 

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…

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…

Proof in pictures…

 

As you all know we have certainly had our T1D challenges of late..

 

It felt like we were starting to get a handle on things and then Spring Break happened.. and a complete change in routine

I have been VERY HAPPY with the lazy mornings and actually being able to catch up on some much needed sleep.

Eden has taken full advantage of this too – and quite honestly would probably sleep all day if I gave her the chance.

 

Spring Break has enabled me to see a number of things clearly D wise..

1. We have pretty much got her nighttime basal rates set perfectly.
2. Due to her sleeping in – I can see that we have her mid/late morning basal rates set perfectly.
3. Eating at different times of day and more “treats” than usual has created an unknown for whether we have carb ratios set correctly and some low lows and high highs
4. We still have some work to do for late afternoon and evening spikes that have now appeared
5. Eden has done amazingly well with her D care whilst at home and with friendly reminders
6. WE HAVE MADE AMAZING PROGRESS

 

Just a few short weeks ago we were looking at this… (we want to be in the GREEN)

 

 

Average blood sugar for the week was …. 209

crazy high spikes and randomness (Dex doesn’t give number above 400 – we had PLENTY of them)

 

 

One week later …

 

 

Average blood sugar for the week was …. 191

 

 

And the past 7 days …

 

 

Eden’s average blood sugar was 174

 

The progress we have made in a few short weeks has been AMAZING..

We have PROOF in pictures that our hard work is paying off and I couldn’t be happier right now 😃

 

Spring Break came at the perfect time and has definitely agreed with Eden – we still have a week left of break to go to do some more tweaking and then we will see how long it all lasts…

 

 

Until then – totally doing a well deserved happy dance …

My human guinea pig …

We had our Endo (specialist doctor) appointment on Tuesday – a day that we really do not look forward to.

I went into the appointment with a list of questions, comments and concerns – MANY more than usual – and the fear that I would let my frayed emotions get the better of me.

We have had SO MANY issues with T1D lately and it has been ridiculously, frustratingly, HARD. I hate the feeling of trying to explain how/why Eden’s blood sugars have been so high and whacked out. Thankfully her Dr. is amazing, kind and incredibly supportive and encouraging.

 

The thing is, I’m kind of off the hook.

I can only do so much with her D care and management and SHE needs to do the rest. 

BUT, I’m kind of also ON the hook too because I’m her parent and it’s my job to ensure she is safe and healthy. 

 

Eden is not at the point of being able to completely self-manage. Among other things, I keep track of site change days, insulin levels in her pump, CGM sensor changes and inserting the devices into her body. Eden does not make any changes to the insulin dosages that are programmed into her pump either.

I do that. 

The only way to do that is to track trends and consistently ask questions of Eden to determine whether changes might even need to be made. Increasing the amount of insulin Eden gets is not a thing to mess around with – I take it very seriously and do my darndest to fine tune things to the best of my ability.

Eden gets a steady stream of insulin (called basal insulin) 24hours a day – as well as needing insulin for meals or high blood sugar (those rates vary too). Her basal insulin requirements vary dramatically depending upon the time of day. Currently she has NINE basal rate settings programmed into her pump that I tweak up/down and change the time around. An hour here or there makes a difference – and getting those settings just right is a near impossible feat lately.

 

The only true way to test whether Eden is getting the correct amount of basal insulin is to do basal rate testing – which requires her NOT to eat or exercise – so we can see if her blood sugar rates remain steady over whatever period of time we are analyzing. For the past 4 days we have not allowed Eden to have a snack in the morning at school so I can get a better idea of what is happening with her blood sugars. Thank goodness I can monitor from afar with the use of Dex and Nightscout – or she would be needing to test her blood sugar every 30-60 minutes.

The gradual changes I made over the last few weeks have not been working. The doctor helped with some suggestions which I applied but they still weren’t making ANY difference. This morning, being completely fed up, I decided to go super aggressive on the changes and told Eden ONE more day of no snack..

Well – that didn’t work..

Eden’s blood sugar went low at the tail end of PE today (hopefully not from my changes) so she needed to treat herself with some fast acting sugar. PE is another story all together – never the same level of exercise 2 days in a row – so very hard to manage.

 

I watched from a distance as her blood sugar slowly crept from low, to in-range and then higher and higher and higher, into crazy high ONCE AGAIN.

 

I now have no idea whether she over treated the low and that contributed to the rising blood sugar levels or my aggressive basal rate changes were NO WHERE near aggressive enough??

The reality – my poor kid is really nothing short of my human guinea pig.

Every day we are taking our best guess with the information we have and giving her medication that can kill her based on those guesses…

no snack again tomorrow for my girl as we try to figure out the mystery and exactly WHICH basal rate I need to change by a little or a lot.. pretty sure we need an overhaul for other settings too – but basal rates is the place to start.

Type 1 Diabetes seriously has a mind of it’s own – it makes absolutely NO SENSE some days and changes the rules whenever the heck it wants to. There is ALWAYS something to keep us on our toes – D never rests and lately seems to be getting the last laugh.

 

WE NEED A CURE

Clear as mud…

today we got some clarity..

not a lot – but a little.. 

enough to make some conclusions on changes that we need to make and enough to make me feel guilty.

the past few weeks have been tough..

Blood sugars have been out of control – a lot of it self inflicted because Eden had been forgetting to give herself insulin at school when she ate. A few missed doses here and there I can handle – but when it is becoming an almost every day occurrence things had to change…

For the past 4 days – Eden has been required to go to the nurses office to check her blood sugar and dose her insulin for lunch when she is at school.

this was a very hard decision to come to – one that Eden did NOT like.

Eden has been considered “self-managed” at middle school since she began last August, meaning that she is legally able to manage her own diabetes care whilst at school.

This means she is solely responsible for testing her blood sugar when required – after PE – before lunch – before after school sports activities, etc. She is required to tell a teacher if her blood sugar is low who can then notify the nurse. She is also responsible for administering her own “medication” i.e.: her insulin, as needed when she eats anything.

Eden and I communicate throughout the day and I can obviously see what is happening with her blood sugars thanks to Nightscout and Dexcom. There have been multiple occasions where I have needed to contact the office or a teacher because her blood sugar was dropping dangerously low or vice versa skyhigh. It came to a point where I had to just watch her blood sugar skyrocket and not make the call.. I couldn’t be calling several times a day and pulling her out of class. She needed to step up.

Unfortunately, even with all the tools available and the trust we put in her to manage her own health care – she hit a wall…

It is exhausting – time consuming and there are days when you just don’t want to have to deal with it.

I get it – completely.

Those days were becoming more and more so we needed to step in to make changes and ensure that her health came first and that it didn’t start to seriously impact her learning abilities or her well being.

The past couple of weeks have been taxing ..

I feel like I have been constantly on Eden… constantly…

When I would see her blood sugar skyrocketing during the day I would be MAD.. Mad because it indicated that she wasn’t giving herself insulin. I don’t monitor exactly when she eats day in and day out. She should be able to eat a snack if she is hungry – eat if someone has brought something to share – choose her own snacks and eat like a pre-teen kid without her mother asking questions..

Because she was not giving herself insulin on a regular basis and we caught her out a few times not even testing her blood sugar we had to make the choice to restrict her management and self control for a couple of weeks to get her back on track.

Today – Eden has done everything as we had planned. We have been in contact and I can tell by her blood sugars that she has given insulin when she says she has.

and her blood sugars still skyrocketed

STILL SKYROCKETED…

at around the same time of the day

 

That is the part that makes me feel incredibly guilty.

 

SO MANY FACTORS affect blood sugar but we couldn’t see or anticipate any other factors because she wasn’t doing what needed to be done in the first place. We always wait for a pattern before we make any insulin dosage changes..

there WAS A PATTERN… and all along I thought the pattern was her fault

Her lapses made it impossible to see anything else.

We try to fine tune everything down to the hour of the day – every few hours she requires a different basal insulin dosage and daylight savings certainly did not make things easier for us this week.

I owe Eden an apology.

Yes – she needed to be observed at school to get back on track..

But now it is clear or at least as clear as mud as to the next step we need to take.  There are changes that need to be made to her basal and/or meal time insulin dosages at certain times of day that were totally, completely and utterly out of her control..

lesson learned. 

Type 1 Diabetes is stupid and no matter what you do day in and day out – it does not like to be controlled (like a teenager!) and will always do what it wants.