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.

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

 

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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

 

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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…

 

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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.

 

Continue reading

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

She should…

 

The last few weeks have been kinda crazy around here…

Basketball season is well and truly in full swing – meaning that pretty much every single afternoon / evening / weekend is filled with basketball of some sort.. ❤️🏀

What does that mean..?

Well in Type 1 Diabetes land it means unpredictable and increasingly HARD to manage blood sugars.

more worry and less sleep for us D-parents

 

You should all know by now that LOW blood sugars are and can be extremely dangerous if not treated promptly.

Some days all it takes is a little boost of sugar to raise Eden’s blood sugar to a safe level. Other days it takes a LOT and I mean a LOT of sugar to raise her blood sugar and keep it there without falling again.

Exercise and Type 1 Diabetes is a weird beast.

 

A lot of exercise causes a cumulative and delayed low reaction.. We don’t know WHEN this might happen although through experience we have gained a fair bit of knowledge on how Eden’s body USUALLY reacts.

 

We had quite a few challenges to face this past weekend.

Eden had SEVEN basketball games within 2 days  – FIVE games in one day

 

That is a LOT of exercise and it requires us all to be on our toes, thinking about D the entire time..

Something we DID NOT expect was for Eden’s blood sugar to crash seemingly for NO REASON – just before her FIRST game.

It started gradually – then she started dropping at a faster and faster rate during pre-game warm ups – with double arrows down showing on our wrists thanks to Dexcom and Nightscout. (something we would never have known without Dex)

We yelled out for her to EAT – she still had a LOT of active insulin working in her body from the breakfast she ate just before we left the house. She didn’t test her blood sugar – just grabbed a handful of fruit pieces, gave us a thumbs up and ran back onto the court.

Her blood sugar continued to drop over the next 10 minutes – we yell for her to EAT again

At this point – D-dad and I think that she may have wrapped the sensor on her arm too tightly – compression of the Dexcom sensor can cause FALSE low readings.. It made sense – she started dropping right after she wrapped her arm for the game.

 

We relax a little bit and signal for her to test her blood sugar before she takes the court.

What she tells us sends D-dad and I into complete PANIC MODE.

Her blood sugar was 60

 

LOW – DANGEROUSLY LOW – to be exercising – and that low after already consuming a lot of sugar ?!?!

Even LOWER than what we were seeing on our wrists – HOLY CRAP – I check her pump and see she still has TOO MUCH insulin active to consider it safe to take the court.

 

Before we can even react – she is on the court ready for tip off. The game starts.

D-dad and I are a barrel of nerves – watching her – watching our wrists

 

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Thankfully we have a time out within the first few minutes – we signal for her to EAT MORE

Back to the game – she air balls 3 shots – NOT usual for her – she is NOT playing like herself and D-dad and I are worried..

REALLY WORRIED. 

D-dad starts to get up from the bleachers to have coach pull her from the game. Something we have never done – but were worried enough to contemplate doing it.

We decide to hold off as she continues to give us the thumbs up that she is OK. When blood sugars are moving so quickly – it can take Dex up to 20 minutes to catch up to real time blood sugar levels and display accurate numbers. She has had a sh*tload of fast acting carbs so I give her the benefit of the doubt and hope she is in tune with her body.

End of the 1st Quarter – she tests her blood sugar and it is headed UP – Phew – finally headed in the right direction. Back to the court and Eden playing much more like herself. That helps us to relax and enjoy the remainder of the game and even teach some of the parents on the bench a little bit about Type 1 Diabetes.

The best comment – “Eden has Diabetes?” – “We had no idea.”

Eden has gained a lot of respect over the years for her basketball skills. From parents, coaches and players alike. It has taken some time – but she has earned it.

  • A GIRL – playing on the top boys team in her age group.
  • A GIRL – who happens to be the leading scorer for her team for the last 2 tournaments.
  • A GIRL – whose nickname is “The Dagger” because she nails 3-point shots in critical moments of the game.
  • A GIRL – who referees come up to after the game asking her name
  • A GIRL – who happens to have Type 1 Diabetes

 

We have to plan and account for T1D in every decision we make – especially related to basketball.

Sometimes plans just don’t work out and you have to go with the flow – hoping that T1D cooperates so that the show can go on.

Playing SO MANY basketball games this past weekend was a HUGE undertaking and challenge. 

Much more than anyone could possibly understand unless they lived the T1D life.

 

Not only does Eden battle the physical tiredness of being so active – but we deal with the emotional exhaustion from constantly being “on” and trying to be one step ahead of D.

I don’t necessarily want all of Eden’s team mates or the parents to know she has T1D – but seriously – it just makes her all that more badass on the basketball court because not only does she play her heart out each and every game – she literally juggles her life.

Type 1 Diabetes may constantly have us on the edge of our seats and dealing with it become our normal, but every time I pause and think about it. REALLY think about what T1D life entails and the struggles it poses – I think that the world should know.

 

I wonder what they would all think if they knew just what it takes to keep her alive every.single.day.?

Would she get a whole new level of respect?

She should… 

She is an amazing kid – basketball player – fighter – T1D warrior  – with so much strength and resilience

Because T1D life is not easy – Basketball with T1D is not easy – Eden just makes it look easy 

T1D Conversations …

 

Basketball practice immediately after school has been posing some challenges for us.

 

  • The first –  is that is starts just over an hour after she has her lunch. Too early to get an accurate blood sugar result if she were to do a finger prick.

Too much food still digesting – too much insulin still at work.

The good thing is that we have Dex (and D-dad and I have our Pebble watch) – which we can consult and see where her blood sugar is at any given moment.

 

  • The second – is that Dex is NO GOOD if you don’t consult it. or hear it’s warnings (which is very understandable in a loud gym)
  • The third  – we really had no idea how involved or active Eden was/is going to be during these practices that she is assisting with. She is not on the team – just assisting..
  • The fourth  – Eden is used to having mom on the sidelines – watching and knowing when we could have potential blood sugar issues.

 

Eden has been going to these on her own – which is GREAT. She needs to figure this stuff out. She can’t have me accompanying her to basketball the rest of her life. 

 

BUT – she has had low blood sugar issues ALL BUT ONE of the times – making me a nervous wreck. Something obviously needs to change – less insulin for her lunch would probably be a good place to start – figuring out how much less the tricky part.

 

Yesterday D-dad gave up his Pebble watch so that Eden could wear it to school. She does NOT like to carry the Dex on her body – which would be ideal (picking our battles here) – but she does carry it with her in a bag all day.

As you should know the Pebble vibrates your wrist alerting you to an issue – just as Dex does. You can glance down at your wrist and know exactly what the problem is and do something about it. You can also get the alerts from your phone sent to the Pebble – such as text messages ..

The text message part for me was fabulous yesterday.. Eden has her phone on silent during the day – if I send her a message, I have to hope she sees it and responds to it..

This was our conversation yesterday during basketball practice. Eden was wearing the Pebble and I was letting her do her thing until I saw the 2 arrows down starting to rear their ugly head again with 30 minutes left of practice. At first I just wanted to be sure she was paying attention to what was happening – then I started to really worry…

 

 

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Getting Eden a Pebble watch as another tool might seem like overkill – but in this instance it was an absolute blessing. She might not have felt the fast drop in her blood sugar until she could barely move. Pebble let her know what was happening and then her nagging mother ensured she was safe and doing what needed to be done.

Disaster averted. again.

Thank you Dex – Thank you Nightscout – Thank you Pebble.

Now I’m going shopping …

Better you than me …. 😳

 

Sometimes not stepping in as a parent is difficult.

 

Our kids need to learn on their own.

Sometimes the hard way… the thing is – the hard way with Type 1 Diabetes is VERY hard to sit back and watch as a mother.

 

Eden isn’t 7 years old anymore.

She has had Type 1 Diabetes for over 4 years.

She knows the drill. She knows what she SHOULD be doing.

But she is still a kid – a kid with a carefree, blasé attitude – who thinks everything is “fine” and I shouldn’t worry so much.

 

She NEEDS to be responsible for her own D-care. Not that everything falls on her shoulders, but she needs to do certain things consistently to ensure that she is safe. She needs to know what to do and when. Some things are obviously much more important than others. If she misses a lunch bolus (insulin dose) here or there it isn’t the end of the world. Yes, she will be HIGH and probably feel crappy, but she isn’t in any immediate danger. Being LOW on the other hand is a different story all together – it can be dangerous – it can be an emergency, quickly.

To date – Eden has had very little experience with strenuous exercise and a parent not being near by. With PE at school – it is rarely “strenuous” or something that causes her blood sugar to drop. We usually know ahead of time if she will be running the mile and we can account for the exercise with additional carbohydrates.

With X Country earlier in the school year – she tested right before practice – and we would assess what needed to be done each day as necessary. And she would supposedly carry sugar in her pocket with her – that didn’t always happen and gave me serious anxiety. X Country races were another story all together and gave us lots of problems. We did NOT have Dexcom or Nightscout when she was running X Country – or that would have eliminated a LOT of needless worry.

This week, as I wrote about yesterday, we have the start of basketball practice at school. We really had no idea how active she herself would be – but knowing Eden, she can’t help herself when on the basketball court and I assume is probably doing drills, etc along with all the other kids.

 

Yesterday – sitting in the car waiting for basketball practice to end, watching her blood sugar tank was HARD. Eden was supposed to be paying close attention to her Dex – but didn’t. Thankfully all worked out fine and her blood sugar started dropping at the very end of practice. I truly WANTED to go into that gym – to see first hand that she was safe, but I didn’t.

 

Until yesterday –

Eden had only been left alone at basketball practice ONCE in her lifetime. 

 

Today – the third time of Eden handling bball practice on her own with T1D and my anxiety cranked it up a notch.  I was at home and with 30 minutes left of practice, her blood sugar started tanking again.

It is SO HARD –

to know that disaster could be right around the corner –

but waiting it out to see if Eden

will do what needs doing..

 

I watched the double arrows down for 10 minutes – I waited and then I just couldn’t NOT do something.. I mean, just HOW LONG should I wait – giving her the benefit of the doubt – before I play the mother card and make the call?

Blood sugar of 91 and double arrows down – meaning still dropping fast was just too much for me with 30 minutes left

I made the call..

 

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I first tried calling the coach – no surprise she didn’t hear her phone (or had it off) with all the noise in the gym. Then I called the school office..

 

Yes – we are trying to let Eden take responsibility for her own D care – giving her the freedom she needs and deserves.

But – I am her mother – so I still call the shots (no pun intended)

 

If at any time I feel like she might be headed for trouble – I WILL step in..

With that said – better you than me walking into the gym today.. 😳