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.

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…. 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…. 

 

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…

 

 

 

 

Might need a new plan …

 

Type 1 Diabetes requires constant monitoring, responsibility and vigilance.

 

blood sugar checks

checking carb counts

dosing insulin

pump site changes

D supplies

prescriptions

dr visits

blood draws

 

It is a BIG responsibility with BIG consequences …

 

Type 1 Diabetes needs to be respected – by Eden – by family – by friends – by teachers – by the public

 

Eden DOES NOT respect Type 1 Diabetes yet. 

 

• She has not needed any additional hospital stays since her diagnosis.
• She has not needed the emergency glucagon.
• She has not been in DKA.
• She has no other related auto-immune diseases besides her hypothyroid
• She is fit, healthy and most often happy

 

Eden

Wants more freedom

Wants to not be different from her peers

Wants to not take the extra time required for her D management

 

She rushes to not stand out

She rushes so she is not late to class

She rushes and forgets to do what needs to be done – important things – that keep her safe

or worse – chooses not to do them

 

Type 1 Diabetes is a HUGE responsibility.

every.single.day.

It takes vigilance and the need for understanding

 

 

Eden is 12 years old – very mature in some of the things she needs to deal with – but at the same time very laid back and carefree. A blessing and a curse.

She does NOT understand the gravity of what could happen.

She COULD understand it if she really, really wanted to.

But I just do not know if she is ready or more importantly, willing.

 

My internal battle as a mother is to decide exactly when she is ready for freedom.

It comes with a heavy emotional burden for me. Because things can go wrong and they can go wrong quickly.

As parents we need to make the decision for her as to whether she can do what needs to be done to keep herself safe.

 

image found on Pinterest

 

Yesterday – she did NOT do the right thing. 

She did not follow the guidelines/plan that we put in place.

She put her life in danger. 

She almost gave her mother a heart attack 

 

Things could have been bad. very, very, bad.

 

I had a meltdown last night and I hope that in some way I got through to her.. She scared me…. really scared me…

As much as I hate to say this – I think SHE needs to be scared. Maybe that is the only way she will truly understand the consequences of her actions..

 

Today – Eden has been given another chance to prove that she has what it takes to do what needs doing.

I WANT her to have the freedom she desires – but I’m not so sure I can give it to her yet.

 

I’m hopeful – But I think we might need a new plan…

Lets add More …

 

Eden currently has a thumb injury ..

Unfortunately it has sidelined her from her beloved basketball – we aren’t sure how long for yet – waiting on Ortho appointment on Friday to find out.

 

NOT that I am happy that Eden is injured – but I’m kinda a tiny wee bit happy that she isn’t playing basketball this week…

 

Middle School Cross Country starts today !!!

 

What does that mean?

 

• practice 4 nights a week straight after school
• 1 of those is a 3 mile run off campus
• 1.5 mile meets versus other schools
• a chance for Eden to kick butt

 

What else does that mean?

 

• more training people on T1D and the effects of exercise
• more stress and worry for me
• emergency glucagon training for a coach (done by school nurse)
• more responsibility for Eden to test her blood sugar and listen to her body
• Eden needs to carry sugar at all times
• no more D-mom present when she is exercising

 

So…

 

I’m happy to not have to basically drive straight from Cross Country to basketball practice 

I’m happy that we just need to deal with one sport this week and the effect it might have on her night time blood sugar levels

I’m also happy that she is trying something new.. I know she will love it!

 

Eden is still trying to get used to the new back to school routine – she forgot to test her blood sugar after PE yesterday – big oops… and now we are throwing something else into the mix.. which requires her to be super vigilant.

 

She can do it – I know she can.. 

It just isn’t as easy as testing her blood sugar and running – she needs to think ahead, eat if required and know that a normally great blood sugar number will NOT be OK if she is going to be running non-stop for 45 minutes!

 

We don’t have enough going on … Lets add more 😉

 

me?

Well, I sure wish I could be a fly on the wall…

I guess I could always watch from the school parking lot … ?

Safe for Today….

 

This morning I was startled awake in the middle of a terrible dream/nightmare …

 

Clearly my mind is ALWAYS thinking about

Type 1 Diabetes

even in my sleep

 

Nothing like starting the day off in panic mode and the fear of what the day might bring..

 

LOW blood sugar is a real and present danger every single time that Eden is extremely active. Yesterday her blood sugars were running high due to adrenaline and for the most part those high blood sugars will most always correct/balance themselves once the exercise catches up with her.

 

Basically my dream entailed Eden passing out and collapsing on the basketball court during her camp 😦

 

No-one around her knew what had happened or had any idea what to do as she had a low blood sugar seizure in the middle of the court. I was frantic running onto the court with her medical kit – skipping testing her blood sugar and going straight for the glucose gel trying to rub it into her cheeks as everyone around us stopped and stared. Next I went for the Glucagon – which I have NEVER had to use in real life – and my hands were shaking SO MUCH that I wasn’t able to get the needle into the bottle… I can still visualize the looks on everyones face and the EXACT court this all happened on…

 

Today I was SO worried leaving the house that my dream was a premonition…

 

What scared me the most – due to the fact that Eden was moved from the 6th grade to the 8th grade group she was on that specific court today – and there are 7 other courts in the building 😦

 

talk about having an uneasy feeling ALL DAY…

I was watching her like a hawk!

 

Good news is we survived the day today without any issues.. FINGERS CROSSED that the next 2 days go as smoothly…

I might just be a nervous wreck until this camp is over … 😦

 

 

Road trip!

Heading on a road trip!

 

Eden and I are getting ready to head out of town for her basketball tournament… Not that Reno is really that far away but we will be gone overnight… Plus I am flying solo – D-dad is in Texas and Ally is happily staying with one of her besties (thank you ! )

 

I am excited but nervous at the same time – I HATE driving to places when I don’t know exactly where I am going.. especially in a strange city. GPS has not been friendly to me lately – so I have a printed map and instructions and looked at that map numerous times.. If we didn’t have a time deadline it wouldn’t be as big a deal – but I don’t need the added stress of running late for a game!

 

We can’t check in to our hotel until after our first 2 games – what does that mean?

 

I have to carry ALL of Eden’s medical supplies with me – cart them all around the convention center with me for hours on end… We of course usually have Eden’s kit (see here) that goes with us everywhere, but being gone overnight and playing multiple games per day I need to have EXTRA of everything..

 

I can’t risk leaving anything in the car – we will be traveling with insulin which we don’t usually carry daily as it is in her insulin pump – being gone overnight I need to have it JUST IN CASE … plus multiple juices, snacks and low treatments – extra glucagon (see here) and pump supplies…

 

Besides the excess heat from anything being left in the car – what if someone saw our bags and broke in to the car? we would be royally screwed…. not worth the risk – so my back and shoulder will suffer..

 

I have everything possible crossed for a D friendly weekend – flying solo will be a fun time for Eden and I but I will also have to also carry the burden of being solely responsible in an unfamiliar place with NO back up or support…

 

 

 

 

please – please – please – D – please don’t choose this weekend to be more of a pain in the butt than usual!

 

What an ACTIVE week…. How many Lows will we have ?

So this week is an unusually active week for Eden…

Why does this matter or make a difference??

Well – exercise can lower blood sugar levels up to 24 HOURS after the actual exercise took place!!

We generally see Eden’s blood sugar numbers run on the lower end of normal the day after an intense basketball workout or a tournament day when she plays more than one basketball game in a day. What will happen when she doesn’t have a rest day? I expect to see MANY lows this week… hopefully not TOO low….. (in case you don’t know – too low = bad = immediate sugar required – severe low = REALLY bad – read more HERE and HERE )

THIS is our week:

• Saturday – 2 games of basketball
• Saturday night – DAYLIGHT SAVINGS – lose an hour sleep – insulin settings tied to time of day
• Sunday – 1 basketball game
• Sunday night – intense 2.5 hour basketball training and scrimmage
• Monday night – 1.5 hour basketball practice
• Tuesday night – 2 hour basketball tryouts
• Wednesday night – 1.5 hour basketball practice
• Thursday night – 2 hour basketball tryouts
• Friday night – AT HOME .. phew!

good thing I like basketball – right?!

She certainly ran low (not scary low) yesterday – and also at basketball practice last night – which is unusual… She actually tends to run HIGHER on a Monday night practice because she is disconnected from her pump and Monday practices seem to be less strenuous.

I pay CLOSE attention to these things – I will usually know when a post basketball HIGH blood sugar is caused by adrenaline versus not getting enough insulin from being disconnected to her insulin pump. We check her blood sugar MULTIPLE times during the night while she is sleeping to ensure she doesn’t drop too low – we make changes to the amount of insulin she gets on these nights to help stop delayed LOWS from happening.. She DOES NOT wake up when low…

Eden is starting to master counting her carbohydrates and dosing her insulin on NON ACTIVE days/nights – but when you throw exercise into the mix you need to think of things COMPLETELY differently… we DO NOT cover (dose insulin for) ALL of the carbs for the food she eats prior to or just after exercise… how do we KNOW what to cover and what not to ??? WE GUESS – and we GUESS based on so many different factors…

HOW DO I TEACH THESE THINGS TO EDEN ?!?!?! 

What IS Glucagon anyway?

My “Learning Moment” post the other day was about Low Blood Sugar or Hypoglycemia.. I mentioned our emergency Glucagon but I didn’t really explain what it was..

Glucagon is a hormone produced by the pancreas – as is insulin. Whereas insulin LOWERS blood glucose levels, Glucagon RAISES them. Glucagon triggers the liver and muscles to release stored glucose thus raising blood sugar levels. Glucagon itself is NOT sugar.

In an emergency hypoglycemic (low blood sugar) situation where Eden or any other T1D is unconscious or having a seizure we would need to use our Glucagon Emergency Kit.

The kit comes in 2 parts – a vial with powdered Glucagon and a nasty looking syringe with diluting fluid.

In an emergency we need to be able to have our wits together enough to mix the Glucagon and inject it into our child. I have never had to do it and I never want to, but I am prepared and won’t hesitate if her life depends on it.

Glucagon like any other medication has an expiration date. It is expensive but we need to have it just in case. I could never put a price on my daughters life and would pay much more if it would guarantee her safety.

This picture is of our expired “stash” of Glucagon – I cannot bring myself to throw it away. If I need to use more than one kit at least I will have these as back-up. We also have one in the medical kit she carries everywhere and at school in the event of an emergency.

Lets hope this stash continues to grow – because that means we are not using it..  

I don’t ever want to have to use it.