RIP Pump #1

On Friday afternoon I got a phone call from C letting me know that while swimming (with his summer day-camp), he noticed his pump’s screen was filled with water and he couldn’t get it to turn on.

Yes, that’s a small lake of water in the bottom of the screen

*Yes, the Ping is waterproof.  Yes, I’ve let him swim even with the new one already.  No I don’t think it’s a problem.  C’s Ping has been in the ocean, many swimming pools, jacuzzis (oops! taken off quickly), and water slides and lazy rivers at the water park.  I completely trust its waterproofness.  I later discovered that there was a small tear in the rubber covering the buttons that allowed the water in. 

I called Animas and a new pump was scheduled to be delivered the next morning.  It would end up being about 18 hours later.  I tried to get a hold of his Dr. and another Dr. that he’s seen to double check the amount of Lantus I should give.  I didn’t hear back from anyone for about 3 more hours.  Only 15 hours left until he should be back on a pump.  As soon as the pump should have arrived, we were to be jumping in the car and heading to Dodgers Stadium for the game.  I did not want to deal with overlapping the Lantus and the pump’s basal.  I didn’t want to deal with trying to figure out when the Lantus quit working and the pump started.  I would’ve been happy to under normal circumstance, but not while we’re out trying to watch baseball and eat stadium food in under the blazing hot sun.  I wanted “easy.”

This may or may not be for everyone, so please don’t take advice from me…  I decided to forgo the Lantus and just give corrections every 3 hours. (Yes, I checked with his Dr. to make sure they thought it would be ok FOR US)  It ended up going really well and his numbers were suprisingly “in range” (I’m calling under 200 “in range” when we’re talking about no basal).

At bedtime his number was 117 and he wanted something to eat.  It would’ve only been about 3/4 unit of insulin to cover it and he didn’t need a correction.  I was torn as to whether or not he should give another shot.  I decided against it being that we’d be correcting soon enough.

When I walked in his room carrying a meter, alcohol, a syringe and a vial of insulin I felt fine.  I moved his blanket to find his hand and immediately it hit me.  My son looking so perfect was falling apart on the inside.  I knew his body was being ravaged from that stupid GoGurt he ate.  I realized how the pump masks the issue so well.  Sure there are highs and lows but they always seem so easily treatable.  Knowing there was no pump and no basal, the reality of what would happen if my son didn’t have insulin hit me very hard.  My stomach was so tight waiting to see his number 347 pop up and the 0.7 right after on the ketone meter.

I had to try to wake him from a deep sleep, get him down from his bunk bed and into my room so he’d wake up enough to give himself an injection (he did not want to grant me permission to do it in his sleep).  Two hours later he was in the low 200s with no ketones and had to get up to give another shot.  He was hovering around 100 when we woke up and 97 three hours later when we were getting ready to leave for the stadium.  It’s really interesting seeing how the body reacts when it’s in shock like that.  His numbers were actually super manageable.  Not what I’d expected.

p.s. whole other story but…. UPS didn’t get his pump delivered in time for us to have to leave.  Luckily I text messaged the rep in Los Angeles who we’ve gotten to know pretty well.  He met us 15 minutes away from Dodgers Stadium to hand us a loaner pump.  What a blessing!

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Night Lows

C has not woken up from a low yet.  It’s been about a year and a half and it worries me.  I have checked him in his sleep in the 50s, the 40s a handful of times and once at 32.  Just sleeping peacefully as though there are no problems.  Everyone tells me he’ll wake himself when he’s low, but really… HOW low??

A few nights ago I checked him at 3am and his number was 82.  He hadn’t had a lot of exercise and there was no insulin on board.  I woke him but he didn’t want juice and asked that I just do it with his pump.  I dropped it to -50% basal for 2 hours.  I normally would’ve done an hour tops, but I wasn’t sure I’d be able to wake up again.

In the morning I went in to check him and saw the juice box on his nightstand had the straw in it.  The wrapper was right next to him.  Panic set in and I tested him…302.  Once he woke up I asked him about it, he says, “Oh ya, I felt low after you left so I drank the juice.”  I told him he’s “GOT to wake me up in that situation…what if he kept dropping lower?? We could have a serious problem.”

His answer?  “I doubt that was going to happen.  I felt pretty hungry so I went to the kitchen and ate the rest of the taco shells.”

hahhaha!  I am sooooo glad he got up and took care of things.  He wasn’t technically ‘asleep’ but 3am sleepiness is pretty close to asleep.  I feel like he has a little more security going on now.

sleep=panic

Last night I went to get C’s pump from him to change the cartridge and he realized it had been yanked out without his knowledge.  When? Who knows? How long without insulin? Was it out BEFORE he bolused for that cupcake earlier?  Ugh.  333 showed up on the meter.  Quick went through the change, tried to do a new insert and the inset didn’t stick on one side. I peeled it back slightly and saw that the canula was indeed inside his skin.  I have no idea why I didn’t start over at that point, but instead I pushed it the rest of the way in like a thumb tack and stuck the edges.  I immediately realized how stupid that was when he’s already high, but whatev…we all make weird decisions sometimes.  We had a no-carb dinner (eggs/bacon) due to that so I could make sure his number was coming down.  It stayed the same, so I corrected again.  Then I corrected again at bedtime.  With all this insulin on board I KNEW I had to recheck in an hour or so and set my alarm.  I also had an alarm at 2:30am for a final (hopefully) check.

This morning I woke up soooo comfy.  I must’ve slept really good because my bed was still made around me.  All of a sudden it hit me… Did I wake up for that night check???  Did I wake up at 2:30???  Did I seriously give my son 3 corrections for a high blood sugar, not know if his site was any good and then not even get up???  The feeling I got is the same feeling I get every single time I realize I didn’t wake up. It’s like needles through my body and nausea at the same time. It hits like a wave through my whole body and I’m scared of what I might find when I go to wake him up.

I found a beautiful sleeping child, nice and warm with a blood sugar of 73 and everything was good again.

how many carbs are in movie theater popcorn? beats me.

Today we were supposed to go to a JDRF event, but C wanted to go to a friend’s birthday party instead.  This was really hard for me.  He’s definitely at an age (and has been for quite some time) that it’s very normal to drop your child off at a party and come pick them up later.  This doesn’t work well with me anymore.  He doesn’t seem to mind (yet), but I still feel bad.  This was even a worse case than you might think.  It had everything working against a drop off.  It started at Chuck E Cheese and then moved to the movie theater.  The parents spoke Spanish and very little English.  I speak English and even less Spanish than they spoke English.  It was tricky, to say the least, to explain why he wasn’t eating the pizza.  I felt like an asshole trying to explain gluten to people who didn’t understand me to begin with.  They were super nice people and I did attempt to have conversations with them though the night, but it was tough.  There was a lot of awkward silence.
Then, C went with them in the car to the theater.  It was so weird to me that I had to call my mom and break the news to her.  What a dork!!
Then we saw the movie (Alice in Wonderland) and here’s where the night really started for me.  C is going to eat a small popcorn at the theater everytime we go no matter what.  I have a very hard time estimating how much popcorn is in their SMALL popcorn.  My latest guess is NINE CUPS.  Small?  Anyways, last time he skyrocketed up to almost 400 afterwards.  BUT, I have to throw that one out because it ended up being a crappy infusion set.  So, tonight I went with  guessing it was 40 grams/carbs.  It’s my starting guess.  I actually thought it was much more, but was not in the mood for him going low at the movies.  Tonight, he dropped the bag.  Which meant I’m holding my fucking phone like a flashlight on the floor trying to guess how many damn cups of popcorn are now on the ground.  It was hard enough to figure out when they were neatly contained in a bag.  Close to impossible to figure out when they’re spread out under the whole row in front of you.  How will I ever KNOW how many carbs are in that bag if this crap keeps happening??  So, C’s sweet friend offers the rest of her bag.  Which is half full.  Not the same amount as on the ground.  I was torn and finally decided (although now I’m not sure how I got to this number) to bolus for another 15 carbs.  And of course I missed the rest of the movie because I’m second guessing myself the whole rest of the time.  I gave him a fun size packet of Pop Rocks for free (no bolus).  They’re only 5 carbs and for some reason I was thinking I gave him too much insulin and wanted to play on the safe side.  After that point, I’m thinking I blew it again and he’ll probably hit the 3hundos on account of my reckless guesstimating.
We got in the car and he tested.  120.
Booyaa!!!!  There might’ve been more thinking going on than I ever wanted to deal with during a movie, but it worked!

How Low?

I just went in to test C before he goes to sleep.  I say, “110.  Awesome number, but a little lower than I want it for bedtime.  Is there anything special you’d like?”
He answers, “I’d like a Vegas-Style Buffet.”
LOL

Ok, back to what I was trying to write before…

We’ve been singing the song How Low by Ludacris around here a lot lately.  Cuz it’s been pretty fitting of C’s numbers…  And really, I get a total kick out of hearing him start singing the chorus and knowing that he’s low.  I love that kid’s great attitude.
Anyway, today was definitely a juice & glucose tabs kind of day.

C’s class was going on a field trip.  To the high school.  Seemed low key.  I asked the teacher if she needed parents because I felt like maybe he could go without me (it was realllly hard to take off work today).  She said she did.  Ok, no problem.
I met the kids at the school at 11:00 am.  They came walking out to the buses and C told me he hadn’t gotten to eat his lunch.  His teacher quickly told me that they were supposed to eat an early lunch, but then the buses came and they didn’t have time to finish so he was taking his lunch with him.  I asked if he’d already given himself insulin and he had.  I told him just to eat it on the bus.  He informed me that there’s no eating on the bus.  This annoyed me so I pulled him out of line and we went to sit on a bench and eat.  Ugh.  Getting grouchy.
Anyway, I asked when he took insulin and he told me it had been about 20 minutes earlier.  He’d had a juice box, but felt low.  I asked what his number had been before he gave insulin.  80.  80? And then give insulin and make the kid wait 20 minutes?!?!?!?  He then told me that he had been really scared until I got there.
This is the situation that I hate.  The situation where the people who are supposed be keeping my son safe don’t understand the consequences.  He was sent to the health office to test and take his insulin.  By the time he walked back to his class to eat, the kids were finishing and lining up to get ready to go to the bus.  I know his teacher’s busy and wouldn’t have had time or understanding to see the number and play out the next situation in her head.  But really, the next situation could’ve been really ugly.  I told her that he was low and that I’d be driving him instead of taking the bus.
On the way there, I explained to him that even adults and teachers usually are not going to know more than him about diabetes.  When he’s in that sort of situation and he knows it’s wrong or is scared, he MUST explain to his teacher what could happen to him.  I assured him that she wants to help and wants to keep him safe, but doesn’t know what his blood sugar should be and what can happen to it.  She understands that he needs to eat after his insulin, but obviously doesn’t understand that he needs to eat on insulin’s schedule, not the school’s.  She doesn’t understand that a number on the verge of a low definitely needs to eat after taking more insulin.
I hate diabetes.  I hate that it puts my son in a helpless position.  I hate that not enough people understand it.
But I love my son.  I love how smart he is and how accepting he is of his lifestyle.  I love that he’s confident and comfortable telling and teaching others about diabetes and celiac disease.  But right now, I’ve got to go teach his teachers something new.  Teach them to listen to him and remember to ask him if he can wait until they get to the field trip, not tell him.
Anyway, now that I’ve got that off my chest, the kid was low 3 other times today.  After all the juices and glucose tabs he was up to around 270 in the afternoon when my mom picked him up.  She didn’t correct him.  He came home, jumped on the trampoline with his brother for a while and tested for dinner and was 106.  Crazy.  Here’s my thoughts though.  Whenever we pull out an infusion set, it’s kinked at the end.  Like a straw that got bent over or something.  The first time we tried it in his booty, it came out straight.  So I’m thinking it might be because he has minimal meat on his body.  He’s skin, muscle and bone.  Little tiny bit of meat on the backside.  But, numbers are usually pretty good and corrections usually work great, so I’m not comlaining.  Last week, he had 3-4 days of rottenly high numbers.  Changed infusion set back to the booty and they were great again.  Cannula came out straight.  The last 3 days his numbers have been almost perfect.  Not really.  They’re just not high.  He’s low every single day.  Only like once though except for today.  Tonight I pulled out the infusion set… STRAIGHT.  Even though it was in his belly.  So, I’m thinking now that we’re getting a few that aren’t getting kinked, maybe he’s getting too much insulin.  There is seriously a LOT of thinking that goes along with this disease.

learning to deal with curveballs

Last Saturday we went to Supercross.  Every other year that we go there’s a tradition.  C EATS.  Nachos, soda, cotton candy, etc.  This year was new, but the same.  I brought our own gluten-free, carb-countable foods: chips/cheese dip, carrots/ranch, apples/peanut butter, sunflower seeds AND yes, cotton candy.  The kind that comes in a package so you know how many carbs to expect…
I timed it so he’d have time to have insulin twice.  Eat right when we get there and then 2 1/2-3 hours later.  First time, we tested, gave insulin and he had everything but the cotton candy.  I figured I’d check his blood glucose again before the cotton candy and make sure it was still appropriate to give it.  Before that happened, he tells me he’s low.  We pull out the meter to test, give a poke, apply the blood and with that the meter goes blank with a flashing battery symbol.  WHAT?!?  He took his carbs while I went through in my head how to handle not having a meter with us.  I have some serious OCD.  So far it seems to help with the diabetes because I am a freaking perfectionist about it all an double triple quadruple check everything we do.
Preparing to go to Supercross took me about 2 days and I went back over everything I packed about 50 times.  If you leave the stadium, you can’t come back in.  That means I couldn’t leave a cooler with double his supplies in the car.  I had to carry everything we neeeded or might need.  I had two insulin pens, a handful of needle tips, two vials of Lantus, a whole bag of syringes, alcohol swabs up the wazoo, extra jars of test strips.  I HAD two meters.  But one was the one that came with his insulin pump which we hadn’t even started using yet.  It costs $200 to replace.  I unpacked it thinking I’d rather not risk anything happening to it.
So of course, a minute after seeing this battery flashing all I could do was laugh.  How ironic that the one thing I didn’t prepare for happened.  So, we went on with life.  Gave insuling a cotton candy and enjoyed the night.  We got home a little after midnight.  I tested him and it was 238.  Higher than most nights, but not really by much.  I was pretty stoked actually.  This was our first time having something sooo “forbidden” like cotton candy and we did it without knowing what his blood sugar was from earlier with a low thrown in for good measure and we made it back with no problems.
A month ago (and definitely before that) I would’ve given myself a heart attack over this kind of wrench thrown in the spoke.  I was so thankful to have the comfort to laugh at the situation and make due.  Thank God for time healing things!