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.

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Oh boy… what a way to start the day

 

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

 

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

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

 

the backstory…

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

I say USUALLY…

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

 

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

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

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

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

 

8.40pm :

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

 

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

10.30pm:

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

12.00am:

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

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YIKES…

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

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

3.20am:

Get up again and do another finger prick… 302

UGH… another correction with her pump.

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

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

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

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

5.45am:

Get out of bed AGAIN to test Eden.

Finger prick 85…

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SPOT ON – COMPLETELY ACCURATE and MATCHING DEX

SAY WHAT ?!

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

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

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

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

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

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

 

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

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

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

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

THAT is the Type 1 Diabetes life.. 

 

WE NEED A CURE…

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..

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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

The Struggle is Real…

They say Change is good, right?

 

Well – this right here ..

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this scribbled MESS – are all the changes that I have made recently to Eden’s insulin pump settings..

 

  • increases to every single basal rate = MORE insulin
  • additional basal rates to TRY to stop blood sugar rises at certain times of the day = MORE insulin
  • changes in sensitivity – ie: how many many mg in blood sugar 1 unit of insulin will bring her down = MORE insulin
  • and now changes to her carb ratios .. yup you guessed it = MORE insulin

 

This scribbled MESS

is how my brain feels right about now

– trying to figure all this crap out.

(BTW – I am purposely leaving this one a mess so I can easily back track if I need to
– I have a “clean” copy too)

 

good news – 

We DID manage to get Eden’s blood sugars into the 100’s last night – and stay there for almost 12 hrs – HOORAY..

 

BUT – first thing this morning – they started to climb again.. ending up in the 300’s by mid-morning and pretty much staying there all day. 😩

 

I am POSITIVE it is hormones – her body is growing and changing and spewing out hormones which is making her body insulin resistant.

Insulin resistance is meaning that the amount of insulin we we able to give her a WEEK AGO is no where near enough for her body THIS WEEK. Just like flipping a light switch – seemingly overnight Eden’s body needs more insulin – MUCH more insulin.

 

My hope is that this new insulin resistance is a growth spurt and the new insulin requirements will continue to be needed.. Not just a passing thing where once her body has decided it has grown enough (for now) – it won’t “not need” the insulin it needs this week – next week..

 

Because what would THAT mean?

THAT would mean – all of the struggles and changes we are going through now causing HIGH blood sugars could just as easily cause LOW blood sugars next week ..

 

Her doctors appointment next week can’t come soon enough..

and of course – her blood sugar numbers ALWAYS go completely haywire right before an appointment..

every.single.time. without fail

 

the Struggle is Real – Type 1 Diabetes is HARD

Lifesaving stuff.. and lots of it

With Type One Diabetes comes medical supplies…

 

LOTS and LOTS of medical supplies….

 

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  • Test strips to test blood sugar
  • Test strips to test for ketones
  • lancets – to put into the lancing device (finger pricker)
  • extra lancing devices
  • syringes
  • glucagon
  • infusion sets for pump site changes
  • reservoirs to hold the insulin in the pump
  • insertion device
  • blood sugar meter
  • blood ketone meter
  • alcohol liquid and wipes
  • medical tape and wound bandages
  • adhesive remover and wipes to help adhesive stick
  • batteries
  • hand santitizer

 

Not to mention the most important LIFE SUPPORT –

INSULIN in the refrigerator

 

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We have to track the date we open a new vial of insulin –

it only remains good for 28 days – empty or not.

 

We have boxes and boxes of juice, fruit pieces, glucose tabs and gel to keep her blood sugar up.

As if that weren’t enough – we have reference books, blood sugar logs, extra blood sugar meters and cases, sharps containers, a special case to keep insulin cold when on the road, and now Dexcom supplies…

 

 

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We have an entire double cupboard in the kitchen dedicated to Eden and her medical supplies…

 

We have extra glucose supplies in the pantry and of course all of the things she carries with her daily..

 

We need to track how often we can replenish these supplies from the pharmacy or supplier and have easy access to contact numbers for the various places. We cannot run out – ever.

We need to fight with insurance companies to get the supplies we need.

We need to track how often we change her insulin pump site – how much insulin is left in her pump so we don’t have the possibility of running out.

We need to make sure her kit is always stocked and check expiration dates regularly.

We need to keep track of doctors appointments and trips to the lab for blood draws.

 

Thanks to Dex and Nightscout – we now have a media hub too where we need to keep medical devices charged at all times

We DO NOT just push a couple of buttons

on an insulin pump and sit back and relax.

 

An insulin pump is NOT A CURE.

 

 

Blood sugar management is a HUGE part of Type 1 Diabetes – but it is far from all that is needed to keep tabs on this disease.

 

every.single.day.

Not the Same… 

 

My “pump” days are over… 2 days of wearing a pretend insulin pump have come and gone. (read more here)

I got to disconnect – take it off and leave it off – which in all honesty was a great feeling.

I don’t want to say it hurt, hurt – but it definitely was not entirely comfortable.

 

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A constant pinching sensation and when the tubing got tugged or snagged on a door handle it was NOT a good feeling..

 

Learning to sleep with it so that when I rolled it could roll with me.

Trying to sleep with it close enough that I wasn’t on top of it (not comfortable) but also so that it didn’t dangle off the edge of the bed pulling on my skin threatening to rip itself out.

 

I snagged it a bunch of times – tried to tuck the tubing in to my pocket as much as I could but it still managed to sneak out and find door handles.

 

I had to change my clothes on Day 1..  I disconnected when I showered – got dressed and then had an “oh crap” moment when I didn’t have anywhere to put my pump.  I could have tried to tuck it into my bra – but I wasn’t really feeling that idea..

 

Doing laundry and somehow it managed to sneak itself out of my pocket and crash land on the dryer door.. Thankfully it isn’t a true medical device – I cringe every time that Eden knocks her pump – what if it stops working??? That thing keeps her ALIVE…

 

I DID however remember to disconnect it before I did the ALS Ice Bucket Challenge yesterday 😉

water and electronic devices do not mix – something that worries me every time that Eden is near water

 

All in all – It was an interesting experiment..

 

I only had a site inserted in my skin and carried a remote around in my pocket..

I didn’t have to worry about pricking my finger 10-15 times a day, dosing for my insulin or anything else…

 

 

I think Eden enjoyed me doing this..

I have a new understanding of a small portion

of what she deals with

BUT – I got freedom after 2 days..

It is NOT THE SAME..

 

 

 

Eden needs to do this for the rest of her life..

She knows what needs to be done and we just do it.

end of story – we have no choice.

we need a cure

Solidarity …

It was that time again today… Time to change Eden’s pump site and refill the insulin stored in her pump. (you can read more about it here)

 

2 days goes by SO QUICKLY….

 

Eden doesn’t like it – she casually said, I don’t like my pump then followed by I don’t like shots either..

 

Sorry kid – it’s one or the other to stay alive

 

 

In solidarity I offered to put in a pump site too.. D-dad and I have done it before, but it was a long time ago when she first got connected to her pump.

 

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Me on the left – Eden on the right

 

As I stared down at my exposed belly getting ready to insert the big needle into myself – I couldn’t do it. I pinched the skin, counted to 3 at least 5 times but was unable to actually jab myself.

 

Something I do to Eden EVERY 2 DAYS –

need her to be able to do on her own…

and I couldn’t do it!

 

In the end I used an inserting device – basically you attach the site (with needle) to a spring loaded device and harpoon yourself with it.

 

Not fun – didn’t hurt that badly, but I can definitely understand why she is not ready to do this herself yet!!

 

So – for the next 2 days I will have a pump site in my belly and the tubing tucked into a pocket..

Eden thinks I should tie a rock to it and carry that around with me  too…  😉

I opted for an old remote..

 

  • I wonder how many times I will snag the tubing on a door handle and rip it out?
  • How it will be sleeping with it?
  • Going to the bathroom?

 

Nothing like living a day in her shoes – although it NOWHERE compares to what she deals with every.single.day.