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…

 

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..

20150319_112136

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.

 

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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

that is all …

things with Type 1 Diabetes have NOT been easy around here lately..

 

 

ridiculous high blood sugars, ketones, not testing, not bolusing.

normal pre-teen eye rolling – I’ve got this – I don’t need you attitude

bad moods, frayed nerves and feeling like bashing my head against a brick wall.

 

all around hard – because T1D NEVER goes away.

We NEVER get a break from it

 

 

Eden is tired of dealing with it.

I am tired of dealing with it.

Our entire family is tired of dealing with it.

 

But we have NO CHOICE.. 

we have to take the good with the bad – celebrate the little victories that lately seem few and far between.

 

Most days we remain positive and upbeat.

Today is not one of those days..

 

Screen Shot 2015-03-05 at 11.15.39 AM

 

Today, I HATE Type 1 Diabetes.

My heart breaks for my daughter because it really just isn’t fair. 

I HATE seeing her upset by this disease and having to go through what she does.

Today, I want it GONE. 

 

 

 

that is all…

 

 

Questioning Stupid..

Eden uses 2 medical devices inserted into her body to help manage her Type 1 Diabetes.

Her insulin pump literally keeps her ALIVE… pumping a steady stream of life sustaining insulin into her body 24 hrs a day, 7 days a week, 365 days a year.

 

We put a LOT of trust into that little machine!

Eden’s blood sugar climbed steadily yesterday and then SKYROCKETED after lunch.. when I saw it happening a few things crossed my mind..

 

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  • She is doing dance in PE – (definitely not her thing) I thought maybe she was embarrassed or nervous because her blood sugar was elevated after PE and I reasoned she probably didn’t give herself insulin to bring it down.
  • I assumed that she probably had her morning snack and/or lunch at school and forgot to bolus for it.
  • I also tried to contact her because I knew her pump would be getting low on insulin (we refill every 2 days) and thought maybe her pump had zero insulin left. She never responded to me.
  • The thought also crossed my mind that maybe she was going through a crazy spell again and we were going to have to make more adjustments to her insulin settings after JUST seeing huge improvements.

 

As I was waiting in the ridiculously long school pick up line – my wrist let me know that her blood sugar was dropping ( at the typical 1 hour mark after lunch ) so my ZERO insulin theory was out the window.

 

Upon getting home from school –

the usual routine ensued –

the questions started.

 

I asked her about her snack and/or forgetting to bolus. She informed me she didn’t even HAVE a snack. hmm.

I then asked her how many units of insulin she had left ( 8 something or other) and we decided we would refill it after her snack. She got herself a snack – dosed her insulin, etc.

 

30 minutes later I asked for her pump so I could refill it and do a new insulin pump site.

I decided to scroll through the pump history to see exactly when she DID bolus.

 

Yup – no bolus after PE (no blood sugar test after PE either – that’s another story all together)

Yup – no bolus for snack – so I trust she didn’t eat one

The totally WEIRD thing – was that the snack that she JUST ate and bolused for WAS NOT in the history..

 

I KNOW she bolused – because a few minutes earlier she had over 8 units in her pump – and now when refilling 30 minutes later, she had considerably less.. She had GOTTEN a dose of insulin, but her pump had not recorded it.. this can be VERY DANGEROUS. We count on the pump calculating how much insulin is “active” in her system.. This information is extremely important to ensure she doesn’t get too much insulin.

My mind started to think and WONDER – whether there was something WRONG with Eden’s pump. Could that have been the cause of the mysterious HIGH also or was Type 1 Diabetes just being stupid ???

 

Seriously, you just NEVER KNOW with T1D

 

Over the next hour I kept a close eye on Eden’s Dex and her blood sugar was dropping – another indication that she definitely got insulin for the (rather large) snack that she ate after school. If she didn’t get any insulin – her blood sugar would be skyrocketing by now – but she was slowly but surely coming back down into a decent range.

I decided to call the pump company to put my mind at rest.

I was pretty sure we were out of warranty – but there was no way I would EVER put a price on my daughter’s life. This insulin pump keeps her alive – and I wasn’t going to risk Eden’s life because we would have to pay a hefty bill… 

Type 1 Diabetes is expensive – that is a fact.

Eden’s life is priceless.

 

Approximately 45 minutes later… Talking with the helpline – going through every test, check, etc on her pump, they deemed it was best to discontinue use and they would send a replacement – by 10am today.  Even though it passed all the checks – it was better to err on the side of caution.

AND – even better,  it was still under warranty ?!?!

YIPPEEEEEE……. 

 

SO happy for wonderful customer service

SO happy that I questioned the strange happenings of today and checked Eden’s pump

SO happy that we have Dex and we are able to keep a close eye on Eden’s blood sugars – just in case

 

In a couple of hours I will be programming all of the vital information into a new insulin pump – a new machine to keep Eden alive.

I will check, check and re-check every single setting –

because me making an error could cause Eden severe consequences. 

 

Type 1 Diabetes is definitely stupid and doesn’t always make sense – but I am glad that especially in this instance I questioned it’s “stupidness” 😊

gotta love a challenge …

Back at it this week means back to school – back to early mornings and back to routine and the first week of basketball season! 🏀🏀🏀

yay 😊

Eden is still too young to play for her Middle School team (she is in 6th grade – bball offered in 7th grade) but she is assisting the coach with 8th grade tryouts and then will help with practices and be at all the games.

That means Eden will also have after school basketball practices/games 4 days a week on top of her regular AAU team tournaments, practices and additional training… good thing we LOVE basketball around here!

 

I knew this week would be challenging because we were heading into a completely different routine and schedule.. we pretty much had things going well for the last 2 weeks but the past couple of days have been interesting.. This basketball overload is going to also have a huge impact on her blood sugars and their predictability.. 

 

I’ve always said I love a challenge ..

 

First day back was yesterday – her blood sugars were near PERFECT the entire day at school… very unusual – she did spike after lunch but we are used to that dilemma and haven’t figured out how to avoid it.

I THOUGHT maybe we had tweaked her insulin settings enough that we might have conquered some of the issues we had been having prior to break… 🙂

 

Today – different story all together… High, high, high …

High after PE – spiked High when she had her snack and spiked High again at lunch..

 

same routine – different result.. 

insulin was new last night – site new this morning 

 

I knew the site was working fine because she wasn’t consistently high – just spiking high after eating.

Almost like clockwork at 2pm – an hour after eating lunch and dosing her insulin her blood sugar started to come down.

At first steadily, then faster and faster and faster..

 

TOO FAST when she was in the gym helping with basketball tryouts..

 

I saw this…

 

and then this…

Nothing like sitting in the school parking lot – watching blood sugars and waiting for practice to end – and hoping..

Hoping she could feel what was going on

Hoping that she was listening to Dex vibrating and warning her that her blood sugar was dropping.

 

She would KILL ME if I went into the gym and made a scene…

at least I was outside and close by..

 

and then I saw THIS …

getting ready to get out of the car – I watched her walk out of the gym.

She was seconds from being embarrassed by her mother…

 

fruit pieces to the rescue – 

she was clueless.. didn’t hear Dex – didn’t feel low

 

2.5 hours until her team practice tonight and I get to do it all over again…

I will be inside watching this time which always makes me feel more comfortable!

 

It might send me crazy – but gotta love basketball season! 😜❤️

 

 

 

Needle in the Haystack…

 

I cannot believe it has been almost a week since my last post…

 

My last report was SO positive and I was super excited.. unfortunately it didn’t last long.

 

Of course we should all know by now that those days of T1D elation are few and far between. 

Type 1 Diabetes being Type 1 Diabetes – we have learned to expect the unexpected. 

Celebrate when we can and move on – because we are chasing a moving target and no 2 days are the same.

 

There are 2 times of day in particular that we have been consistently struggling with keeping Eden’s blood sugars in check.

10am and 10pm

like clockwork – and actually being PREDICTABLE – her blood sugars seem to rise at these times. 

without fail – no matter what we do.

 

But –

  • ONLY when she is at school – NOT on the weekends
  • ONLY when she does not have basketball in the evenings – THOSE nights we fear a crash

 

It really felt like we were making progress – we were cutting it off before it started

Until yesterday..

We have had a few good days and then yesterday the time seemed to shift to 11am and it wasn’t a gradual rise – but a huge spike upwards

last night she had a crazy spike at 10.30pm and did not come down below 200 all night.

I changed her insulin pump site this morning but she has remained high ALL DAY TODAY..

 

yeah – 400’s HIGH

REALLY bad for you HIGH

Makes me squirm and want to scream HIGH

 

  • I HATE to have to nag her all the time
  • I HATE that I have to drill her on what she ate and when
  • I HATE that she might feel the need to hide what she is actually eating
  • I honestly DON’T WANT TO CARE if she took a juice or something else that she really shouldn’t have – but she REALLY needs to think about what she is eating when her blood sugars are SO HIGH
  • I HATE that sometimes we need to say NO
  • I HATE that when she is at school I don’t know why and I can’t find out why without questions

 

She thinks I’m just being a pain in her butt..

 

  • I’m trying to find answers
  • I’m trying to understand WHY so I can fix it
  • I’m trying to help HER understand and CARE why it is so important 
  • I’m trying to get her to be more responsible
  • I’m trying to have her body function to the best of it’s ability
  • I’m trying to keep her out of the hospital and ALIVE

 

needle

I’m trying, I’m trying, I’m trying…

I’m trying to find a needle in the haystack