It’s Happening

C’s application was approved.  He will be receiving a Diabetic Alert Dog!!

This is such exciting news.  We’ve struggled for a while now with him having trouble feeling lows and not feeling a hint of a symptom of highs.  He craves freedom and I want him to have it more than anything.  He’s 12 years old.  Yet, sleepovers scare me to death.  The idea of him forgetting to test and not feeling a low; not feeling the high that comes from a site accidentally pulling out; the thought of him not having help while he’s out or a friend not knowing how to respond when it comes down to it.  These thoughts get to me and it’s hard to move past them.

We’d considered a Continuous Glucose Monitor (CGM).  C’s insurance does not cover it so we weren’t in a big rush, but have definitely discussed it many times.   C knows that I wanted it.  and I know that he doesn’t.  He does not like the idea of another site.  He hates the idea of carrying another item.  He’s already silenced all of the alarms on his pump so that they don’t go off in class and embarrass him…  But a dog?  He would definitely not resent a dog.  He loves the idea of a dog.  I love the idea of using a natural resource and tapping into its abilities.

This is the route for us and I cannot wait to start the journey.  Oh, that’s right… it’s going to be quite the journey.  The organization, Guardian Angel Diabetic Alert Dogs, is doing a sort of co-training with us.  Instead of us waiting 1 1/2 to 2 years for a fully trained dog, we will be receiving a brand spanking new baby puppy in January.  But not just any puppy, one who has been diabetic scent imprinted, meaning exposed to the scent we want it looking for since birth when nursing.  This puppy is bred to be a working dog and is being taught the scent we want to know about.

Still, we won’t be alone.  When we get the puppy (who’s due to be born in about 5 more weeks) we will get a full weekend of teaching us how to train.  We will enroll in a standard puppy training class, we will do scent work.  After 2-4 months, puppy will go back to the trainers for a month.  They will do more intense training including lots of public access work (remember, this dog will go everywhere!).  Then, it comes back to us for another 2-4 months with new instructions on what we need to focus on.  This cycle will repeat until the dog is 1 1/2 to 2 years old and fully trained.  We will be getting our hands held through the entire process yet by having the puppy live with us from the start, it will get precious bonding time with C AND will have the advantage of having real-time training by living with a diabetic.  Not just scent samples, but real-time highs and lows.

I started a facebook page to give updates on our process.  I’d love it if you’d LIKE it and pass the word!

www.facebook.com/camdensguardianangel

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Dear School,

So here’s my day so far and the email sent to the school (and district) today.  Blahhhhh

Hi [School Psychologist] and [School Nurse],

I’m just checking in to see if you were able to come up with any ideas at the meeting this morning about C’s education. I’m also wondering if independent studies of some sort were an option or idea. I’m quite aware of how behind he is and am getting increasingly frustrated, as is he, by not knowing how to help.

I just picked him up from school today due to a high blood sugar and his infusion site (where his insulin pump attaches under his skin) was pulled out. This is not uncommon or very noticeable until a high blood sugar. His clothes will continue to hold the tubing in place making it not that obvious of a problem. However, when I came to change the infusion site, [Health Tech] made it quite clear that she felt that C was lying about the problem and that he’d pulled the site on his own to come home. His story made perfect sense to me as to why he was in the office, how he noticed the problem and everything else he said. [Health Tech], not knowing how the pump operates didn’t think this made any sense. She seemed sure that the pump would’ve known that it had become detached and alarmed to alert him. It would certainly be helpful if it worked that way, but the pump does not know. When C realized that it had become detached he ‘suspended’ the pump, meaning he stopped it from continuing to release insulin, which is exactly what he should’ve done. It would’ve continued leaking insulin until it ran out. When you stop it, it does alarm. Every few minutes it alarms to remind you that it’s no longer delivering insulin, a safety feature. [Health Tech] seemed to assume that when it started alarming is when it was disconnected from his body and that that’s when he pulled it off himself.

I left, taking C with me, feeling very frustrated with the attitude I was feeling from her. C told me that when he showed her that it was detached he grinned (probably because he had just realized the problem??) and she asked why he was smiling and told him it made her think he’d done it on purpose to go home. Type 1 diabetes is a complicated disease.  C is a child doing his best to figure it out on his own while at school. When he has a very high blood sugar my first steps are to check the pump and make sure he’d given insulin for all food eaten and then check the site where it’s connected to make sure it’s still attached. [Health Tech] seemed to be acting like this was totally abnormal and could only happen on purpose.

C is a child who does not need guilt piled on top of everything else. If somebody suspects foul play, I would appreciate a phone call outside of my son’s earshot to talk to me, an adult, about it. I am quite upset by the attitude I received while in the office and can only imagine how a child, already feeling less powerful than an adult, would feel with it directed at them.

This is just another piece of the puzzle that’s leaving me lost as to how to help him succeed at school. C needs another learning option, this one is clearly not working on any levels with him.

Emily B

cc [ ****** Unified School District Health Services Coordinator]

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 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.