The Scary Part of Independence

The other day I posted about how great it is being able to leave C alone and how wonderful he is at taking care of himself… Well, today I had a bit of reality thrown at me.  Although, I typically don’t blame diabetes or get angry with diabetes (anymore!), I definitely felt the unfairness of it today.

Last night, E and I went to the Dodgers game (they lost) and C stayed at his friend’s house until we got home at midnight.  This morning I decided to let him sleep when I went to work due to that.  I tested him and gave a correction bolus.  Woke him slightly to tell him I was leaving and that was that.

About an hour later I texted him asking if he was awake yet.  No answer, still sleeping?  I called about 15 minutes later, no answer.  I texted again with no answer.  I tried to call my roommate but got a text back that she was at work.  I called him probably a total of 20 times over the next 15 minutes.  I called the house phone (which we never answer because we only use it to call 911 and don’t give out the number) and of course, he didn’t answer.

I jumped in my car and headed home.  The entire way trying to mentally prepare for what could be the worst.  Picturing my son unconscious, maybe seizing, maybe dead.  Wondering if he had already been dropping this morning when I gave the correction dose and I’d pushed him too far.  Thinking about the people who have expressed that they don’t think I should let C stay home alone because of D and how I’m going to want to punch them for judging me if something happens to him.  Thinking of his Dr. and how she probably wouldn’t approve of ‘her’ kids being left home alone and how diabetes is the one to blame in all of this.  I’d never ever have these awful thoughts in my head if it hadn’t shown up in our lives.  But it did.  I haven’t felt that angry in a long time.  Granted, I have a lot of other SHIT going on in my life which probably helped me reach that level of being upset, but I just truly fell back into my old(er) thoughts of just feeling that C and I were cheated.

Of course he was fine.  Of course he was sitting on the couch playing video games and eating popcorn.  Of course he left his phone, on vibrate, in his bedroom and totally forgot to call me when he tested.  Ya, he heard the house phone ringing off the hook and thought it was weird but it never occurred to him that someone would be calling HIM on that phone.

I went over the rules with him again and added a new one that if the house phone rings twice in a row or even more he needs to start answering it.  I have been really pushing myself to think of C, not a kid with diabetes, in all situations.  If he hadn’t been diagnosed with this would I leave him home alone at 12 years old?  Yes, without a doubt.  So, scary or not, that’s what I’m going to do.

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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]

Ping-iversary

At diagnosis, C’s nurse mentioned a pump.  He immediately said he never wanted one because he didn’t want surgery.  We had a neighbor on an insulin pump and we had just assumed that she’d had surgery to have it ‘installed.’  The nurse corrected us and he informed him that there was no surgery involved and he let her know that he still was not interested. 

A few months later I was looking at the OmniPod website.  They had a video explaining how it worked.  I was sold.  I asked C to watch and he freaked out yelling how he “WAS NOT GETTING A PUMP!”  I told him that he could NOT make a decision like that without being informed.  He HAD to at least watch the video.

He watched.  And he was ready to pump.  From there we went on Medtronic’s site  together and saw that they had a continuous glucose monitor built-in.  They got us, that was the one we wanted. 

Not long after we were at the JDRF Walk to Cure Diabetes and saw the Animas booth.  We already KNEW we wanted the CGM but we took their info anyways.  Soon after, we found out that C’s insurance didn’t cover the CGM sensors.  We heard that Animas would be integrating eventually and maybe his insurance would cover it by then.  We went on their website.  C was SOLD.  It was Ping or shots.  There was no other option to him.  The color screen, the sleek looks, the waterproofness, the remote control.  He loved it all.  He asked if I thought we could get it by the upcoming weekend.

To be sure we went to a Medtronic class to learn to use their pump, check it out, push its buttons, try out their infusion sets.  But C knew he would never have that pump.  He tried an OmniPod demo.  After about an hour he said it felt annoying and big and wanted it off.  Of course, I don’t think it ever had a fair shot after he’d made up his mind…

A week later the rep came out  to show us the Ping.  We checked it out, pushed its buttons and gazed lovingly at its beautiful color screen.  We filled out the paperwork that night.  But insurance had other plans.  We jumped through hoops for months and we got denied.  I spoke to the boys’ pediatrician only to find out that he works with our insurance and he’d push it through.  A week later I received a call stating that they’d gotten approval and C’s shiny black Ping would be arriving the next day.

C was hooked up one year ago today.  He hasn’t had a shot since. 

best gift we ever received

Shots were unnatural to us.  We couldn’t get small enough dosages to work right for C.  He was starving himself to not get extra shots or have to eat too much at his meals.  He’d estimate down about how much he’d eat and was always left hungry.  For a kid who doesn’t eat meat or cheese (carb free), it was very hard.

Technology, computers, gadgets… these are natural to both of us.  The day we hooked that pump onto him, we felt like life was back to normal.  Neither of us needed time to adjust, it just worked.  He eats when he wants.  We can bolus the tiniest little amounts so he can do his normal ‘grazing’ again.  We can correct a million times a day if we needed to and it keeps track of active insulin for us.  I don’t have to use my calculator as much anymore.  I don’t have to worry about C doing the math wrong anymore.  That pump gave him his life back.  I’ve never been more in awe of a machine in my life.

responsibility

It seems lately (last couple of weeks) that we’ve had a LOT less of diabetes getting in our way.  Yes, a handful of (REALLY high) highs and obviously a handful or two or lows, but nothing that just jumps out and debilitates C or can’t get fixed easily.  I just knocked on wood.  Anyways, feels like a good time to step back a little more and allow C to grow a little more.

On Friday morning C wasn’t feeling well.  I think it was bullshit actually, but how can I prove it?  I can tell him I don’t believe him but he’s got plenty of things he could pull out of his hat that I couldn’t argue with so he stayed home.  Of course by the afternoon he felt great and wanted to play with his friends.  Worked out fine because there was a fundraiser/party at E’s school that evening that a bunch of C’s friends would be at.  BUT, by the time we were ready to eat dinner and go, his blood sugar reading was 475.  Washed hands, dried and retested…536.  Dammit.  Ketones, 0.4  This was a day that I allowed C to bolus for his own food and take responsibility for his own testing.  Guess what…he hadn’t tested since 10am when I asked him to and going out on a limb here, I’m pretty sure he didn’t bolus for at least one of those popsicles.  We corrected and he had to stay home with Grandma while we went out for the night.  I also reminded him that if he wants me to accept the fact that he’s responsible, he’d better start proving it.

On Saturday he went to a Halloween party across the street from us.  The mom gave me the heads up on everything they’d have to eat so I could provide alternatives.  She made sugar-free jello brains so that he could participate in the brain-eating contest.  He didn’t do it anyways, nor did he eat the gluten-free cupcake I sent along, but whatever.  I sent him with a lunchbox and it had glucose tabs and a meter in there, too.  I didn’t call him all day.  Not even when they went around the corner to the school to do pumpkin launching.  Yes, he came back a bit high, but he was in charge.  Since he didn’t eat, I’m guessing the high was from having extra carb tabs before running around.

Yesterday, he was running amuck in the neighborhood all day with his friends.  I never called him.  I did remind him to test 2 or three times through the day, but that was it.  Something I always do that’s enabling is use the meter/remote for his pump.  When we got it, I thought it was the greatest thing ever.  I do still appreciate it greatly, however, it’s made him stop thinking about bolusing for breakfast completely.  I make breakfast, bolus and put his vitamins out every morning.  He comes in, sits down and eats.  I’ve already tested him & given a correction, if needed, while he was still sleeping.  I still do that part (if he’s high, it’s easier to just get it down before trying to wake him) but told him I’m NOT using the remote anymore.  I realized what that means the last two days.  It means halfway through his meal, I go,”You bolused, right?” and he goes, “Oh!” and then boluses.  Whatever, I don’t care if it’s halfway through as long as he’s starting a habit.  Numbers schumbers.  I think you have to be pretty forgiving about numbers when you’re giving more responsibilities.

Lost

Most days, C makes good decisions with his diabetes management.  I trust him when I’m not around to make the right choices and know what to do.  Every once in a while, that is not the case and it’s hard not to let that frustration destroy my day.

Take today for example.  C woke at 122.  I corrected it and he only wanted bacon and eggs for breakfast.  No carbs.  He took a stupid sugar-free vitamin sample which was 3 carbs (sugar alcohol) and I did not bolus for it.  I had no reason to think that there would be a problem with his blood sugar.

I left work early so I’d have time to take my dog for a run/bike ride before picking them up.  While I was out, I got a call from C, “Mom my blood sugar’s 538.”  I asked him to retest and he said that he already wiped his hands with alcohol and retested… It didn’t occur to me to ask him what the other number was.  My bad.  I told him to correct and I’d be there in 5 minutes.

As soon as I picked him up I had him retest with the Ping meter. 206.  In a panic, I grab his other meter to scroll through and see that his first number was 296, after that he washed his hands and came up with the 538.  I asked him why he wouldn’t have retested at that point realizing that these numbers were way to far apart.  His answer was that he wasn’t feeling very good so he figured the 538 was right.  Fuck.  All I can think of is that he gave way too much insulin for his actual number and I’m panicking.

I get home and I’m trying my hardest to relax and not get in a bad mood about this mistake.  I asked how much insulin it wanted to give him when he corrected.  2 units.  Huh?  I was thinking it must’ve been like 4.  So, I check… sure enough it should’ve suggested 4.35 units.  Now I’m fucking pissed.  I asked him if there had been IOB or what the heck was going on and he’s lost.  “I hate having diabetes.  It’s too confusing.” was his answer.

This is the first time he has ever said that he hated diabetes.

How Do You Deal With This?! and rambling

C called me from school this morning.  He felt low in class and walked up to the health office (all the way across campus).  He tested at 59.  The health tech allowed him to call me before taking his carbs.  I told him to have 6 glucose tabs (24 carbs).  Ya, it might’ve sounded like overkill, but last night he hit 55 and it took 45 carbs to get him to 112.  He woke up around 120, so I wanted to play it safe.  Since he’s on his own at school, sometimes I need him to overcompensate for a low to make sure he’s in the clear.
Anyway, to make a long story short, he calls back 15 min later to report a retest result of 214.

Ok, I decided to come back and update the whole story.  I’m so upset with the school/nurse/no-help situation that C’s in every day.  C has his normal classroom with a box full of juice boxes and glucose tabs, a teacher that he’s comfortable with and who I’ve talked to extensively about what C needs and I expect.  He leaves the class and goes next door for math.  Yesterday during math, he tested and was at 59.  He had no glucose tabs or juice in the class with him.  He told the teacher that he was low and needed to go to the health office for carbs.  And he sent him.  C’s class is in the last row at his school and the health office is in the first.  It is clear across campus.  And he went with a 59 blood sugar reading ALONE.
The first thing I think of is that he was obviously in panic mode and not thinking clearly or he would’ve realized he could go to his other class, next door, and get juice.  The next thing that scares me is that it is written in his 504 Plan that he cannot go to the health office alone with a low blood sugar.  Ever.  If there is nobody available, he must stay put and have candy, juice, soda, whatever’s available in the teacher’s presence.  His normal teacher knows this, but apparently, his math teacher doesn’t and C finds it embarassing to bring someone with him.  His regular teacher will just choose someone for him so he’s not embarassed.
So, he got the the office and called me FIRST.  Then, i told him to take the carbs as I said before.  After the last phone call above, I got another call about 30 min later which I missed.  I called the school back right away and the health tech told me that his BG was now 340 and he was in the bathroom testing for ketones.  I assured her that he wouldn’t have developed ketones that quickly and that she needed to tell him that lunch was in 20 minutes and he could correct at that point.  Five minutes later he calls to tell me the ketones came back moderate.  Ugh!  Try convincing this kid that urine ketones are old and probably from the day before and not to worry!  His response was, “Well I AM worried.”  I know from prior experience that this is where his BG keeps skyrocketing due to stress.  I gave up and headed to the school to calm him down.  On my way he calls again to tell me he’s out of test strips.
When I got there I spoke to the health tech.  She told me that he told her he was out of test strips and she sounded (in her tone) like she thought that the last (highest) BG he reported might’ve been made up.  I later checked his meter and it was there…
I felt like he was in a bad situation and decided to take him home.  While I waited for him to go back to class for his backpack, I saw the actual school NURSE walk by (she’s there an hour a week).  When C came back I asked if he’d seen her and he said no.  He sat in the health office for 2 1/2 hours with health issues and she never even came in?  What the hell is she there for?  To sign papers once a week for legalities?  Great.  I told him that I didn’t feel that the adults there were making good choices today and he told me that they don’t do anything.  He does everything himself.
I hate this!!

could be worse

Someone I work with was just asking me about C’s health issues.  I was explaining celiac disease and how it affects diabetes and how i believe that it was the untreated celiac that caused the diabetes and what a bummer that is.  He said something about how it’s nice that we have a diagnosis now and can treat it, but too bad it’s a bit extra work for me.  I said, Ya, it’s a lot more work and it’s never going to let up.  His response was, “It could be worse.”  This is such an interesting statement.  There’s nothing more true than it, but there’s not much that stings worse.
Obviously, any situation you’re in could always be worse, but the fact is, it could be better too.  Thank God my son didn’t get diagnosed with a disease that was going to take his life and there was nothing we could do about it.  But I don’t think someone can understand, without living it every day, that this is not an easy card to be dealt either.  Thinking about the decisions my son has to make every minute of every day forever is a little overwhelming.  The fact that my 10 year old has to look up every food on his iphone to check the company’s allergy statement to be sure it’s safe and then the nutritional facts to get a carb count just so he can have find out if he can have the snack his friends are already finishing is a little ridiculous.
Ya, things could always be worse, I’m totally aware of it.  I remind myself every day.  I’m thankful for research making these two diseases so manageable.  However, I don’t think people outside realize that if we let up on the managing for a minute, things could turn terribly wrong.
As he said this statement, my phone rang and it was C.  At school.  Calling to tell me he was at 54 and in his class.  He wasn’t sure if he should stay put or go to the health office.
He put his teacher on and I told her to keep him there, make sure he retests in 15 min after his carbs.  Told her that if he felt he needed more carbs before the 15 min. was up that it was fine, trust him.  I just got a call back.  15 carbs and 15 minutes later and his new number is 178.  Could be worse, but could definitely be better.