So – we are back – we survived – but I most definitely have more grey hairs than I went away with.
If you are unclear what I am talking about – Eden and I just got back from a 5 day overnight Science Camp trip with her school. I was technically her “medical chaperone” but I was also in charge of assisting with 23 kids the entire trip too.. Let me tell you – it was exhausting! non-stop, action packed days filled with the usual and not so usual sleepless D nights that made for a very challenging trip!!
D didn’t take a break for the trip – we couldn’t leave it at home…
It required even MORE vigilance because you just NEVER know what D is going to throw at you.
Now add in:
- a different schedule
- LOTS of strenuous activity
- unknown carb counts
- a child who doesn’t eat what food is available
- no snacks for backup
- little to no down time
- a child who will not accept suggestions or help
and I had some of my most alone and scariest dealings with T1D yet…
First day hiccups…
Eden rode the bus – her blood sugar levels were great and I had no issues or stress about it thanks to being able to see her blood sugars on my wrist. Arrival at camp and I was happy to get wifi access to continue with remote monitoring.
I also found out that ALL OF THE SNACKS
I brought with me for Eden
COULD NOT BE ON CAMPUS…
I completely understand the reasoning… there were peanut allergies – but I was not made aware of any limitations to food until after we arrived.
NO outside food was technically allowed in cabins but I had approval to bring her T1D related supplies. EVERY SINGLE snack (besides juice and glucose) I brought for Eden to help maintain blood sugars or as additional food supply had to be removed and taken to my car – even those with no nuts but that were manufactured in a nut facility.. I get it, I really do … BUT
This information sent me into an immediate PANIC…
I was so prepared (or so I thought), had the things I needed to sustain Eden’s blood sugars and I had to give them up…
Shortly after finding this out and my head was spinning – the kids were gathered and the chaperones were being escorted in a different direction for a meeting. There was no indication of what the kids were going to be doing or how long we would be separated. As I was walking away, I had a bad feeling.
I spoke up and found out they were going on a HIKE… Um, NO – NOT without me.
She didn’t have anything with her – I was carrying all her D supplies at that time. NO idea how far they were going, etc.etc.. SO I missed the chaperone meeting – my head was already spinning and now I was on the verge of tears – thinking about me headed in another direction and finding out 30 mins into a meeting that Eden was on a hike somewhere, with nothing and not safe… YES – my mind instantly goes there… I was there to protect her and keep her safe and had already been whammied twice.
I’m pretty sure I came across as a bumbling idiot that first afternoon to her camp teacher because my mind was elsewhere as I was wondering what the heck we had gotten ourselves into.
Type 1 Diabetes affects EVERYTHING….
Did I want to hover and be an overbearing parent.. NO
But I was there for a REASON – I was there as a medical chaperone to ensure that my daughter stayed SAFE for 5 days..
To keep Eden ALIVE for 5 days…
Did I need to be with her 24/7 – NO…
But things can happen very quickly especially with SO MANY unknown factors.. and they did happen quickly and they did reinforce exactly WHY I was there..
THANK GOODNESS for Dex, Nightscout and being able to see her blood sugars on my wrist… We were in the mountains – the school had wifi but I had HUGE issues throughout the week maintaining a connection.. This day the D Gods were on our side. It was the ONLY day I had a consistent connection.
Breakfast time and Eden did not like what was being served. There was ONE CHOICE for meals – that was IT. If you didn’t eat it, well then I guess they figured when hungry enough kids would eat at the next meal.
PROBLEM: Type 1 kids HAVE TO EAT to maintain their blood sugar levels!!!!
PROBLEM: Eden wanted to do everything herself – wanted me at a distance – was dosing and guessing carb counts for herself.
Chaperones DO NOT get much of a break during the day so you need to take them when you can get them. There is a very strict schedule to stick to the entire day and part of our job is to wrangle 23 girls and get them to where they need to be – showered, dressed, appropriate clothes for varying activities and be an extra set of eyes and ears for all other mixed group activities.
I decided I would take advantage of class time right after breakfast to shower. I left Eden in the Planetarium with a steady blood sugar – walked 5 minutes up the hill to the cabin and started gathering my things to shower. Meanwhile – my Pebble watch starts vibrating – alerting me to a problem with Eden’s blood sugars.
I left her with PERFECT blood sugars and doing a non-physical activity but she still dropped FAST
D-dad was texting me because his wrist was vibrating too and he was worried… it was happening VERY QUICKLY..
155 double arrows down
120 double arrows down
80 double arrows down
50 double arrows down
NO shower for me… by the time we got to 80 – I dropped everything and hightailed it across campus. Eden didn’t even feel it – or know she was dropping and in serious danger.
A combination of problems.. She likely dosed too much insulin for whatever minimal food she did eat and she didn’t have anything substantial enough to sustain her. T1D’s NEED a combination of fat, protein and carbs to help balance out digestion and insulin requirements. It didn’t happen and she crashed FAST. If I did not have access to her blood sugars on my wrist that morning we would have had a MAJOR problem. The teacher I left her with did not have glucagon or know that Eden had glucose in her bag with her. At the rate she was dropping – she would have most likely passed out before she even knew what was happening.
Thank you Dex, Nightscout and D Gods..
I am quite certain we were saved from absolute DISASTER thanks to our new best friend Dex ..
Later that afternoon we had a 2.5 mile hike. a very strenuous 2.5 mile hike.
Dinner and she didn’t do much better with food intake…
This time – her blood sugar climbed into the 300-400’s – probably because her body was under stress due to lack of food.
After dinner – another hike – blood sugars still high, but better
After hike – kids are treated to a cookie (RIGHT before bedtime)
Bedtime and the start of one of my scariest D moments to date.
A combination of possibly too much insulin for her cookie and all of the strenuous activity from the day catching up with her and we had some SERIOUS low blood sugar issues.
The camp has strict rules – bedtime and lights out at at 9.30pm.
At 9.30 her blood sugar was 66 with active insulin still working from her cookie.
A DANGEROUS situation – one I wouldn’t have known about without Dex beeping and warning me. Ordinarily, I wouldn’t have tested her blood sugar for at least another HOUR.
A situation that I had to try to deal with making ZERO noise – with ZERO lights on – with an exhausted child who was combative and did not want to drink a juice – on a bottom bunk where I could barely reach her to test her blood sugars or get the needed sugar into her mouth.
It took me close to 2 hours to get her blood sugars UP to a safe level – rising gradually then continually falling again for almost 2 hours. I had to wake her continually and load her with SO MUCH glucose to ensure she did not go to sleep and not wake up.
At the lowest point, in the dark – feeling scared and alone –
I was wondering if I needed to try to somehow get her
into my bed incase I needed to use the glucagon.
I did NOT want to have to turn on the main cabin light,
wake all the kids to see Eden seizing, and me mixing the glucagon and stabbing it into her thigh.
In those hours as I lay there waiting for her blood sugar to stabilize – silently crying, cursing and hating D more than ever before – I also got angry.. Reality hit me like a ton of bricks.
We were at Science Camp – It was supposed to be FUN. All the other kids were sound asleep without a care in the world. Eden was in bed – basically fighting her body to stay alive.. If I didn’t have Dex beeping at me like crazy that she was in danger – she could have DIED in those moments…
This was supposed to be fun –
This was DAY TWO – and I was not having fun..
But we would get up at 7am and fight the fight again, because that is what we do. We fight like crazy behind the scenes and put on a brave face for the world to see. We D parents do anything and everything to let our kids be “normal”. We grin and bear it – we have puffy, baggy eyes and carry the weight and stress of this disease on our shoulders.
Our D kids are amazing. We become so good at making it look effortless – like D doesn’t have the upper hand.. But WE know – it is anything but easy even though the world might not see it..
These 2 days are an example of our reality – the scary reality of living with T1D and how quickly things can go wrong.
Science Camp was a HUGE challenge.. it was one of the most stressful weeks of my life, but it was a success. Eden had a blast – she was able to be a kid and enjoy everything all the other kids did. D didn’t stop her one little bit – she drank juice and continued, she had fruit snacks and continued on without skipping a beat. No doubt the other kids had no clue what our signals, sign language and sneaky eating and drinking meant – which is exactly how we wanted it.
Don’t get me wrong – I enjoyed myself too. It was wonderful to be able to be a part of her Science Camp experience. One I highly recommend to anyone who has the chance to partake in. But also, one I am certainly in no hurry to do again..
Without question – Dex paid for itself over and over again in those 5 days and quite literally probably saved Eden’s life.