Running Into the Horror Stories

I don’t know how to start this other than to say that it’s not an upbeat positive post, it’s negative and scary.  I wasn’t sure how/if to share this with anyone else, but keep feeling the need to express the story.  That’s my disclaimer.

Molly (C’s Diabetic Alert Service Dog) came home a few days ago.  She’d been with her trainers for an entire month.  She goes to work with three different super-trainers who work on obedience, public access and scent work in order to make sure we’re on track, see where we need help and give pointers.  We picked her up from T who told me this story.

T and a friend took Molly and some kids to a restaurant for public access work.  The kids wanted to eat outside, but the adults stayed in with Molly for practice.  After eating, they went to the outdoor area to talk to the kids.  There was a couple there and the man walked over to tell T that they give money to support a service dog organization.  T explained that Molly is a Diabetic Alert Dog and what her role is.  The man proceeded to tell her that they had just lost their son to type 1 diabetes the previous week.  He died in his sleep apparently from a low blood sugar despite having five roommates in the house.  He was 24 years old and using a pump.  He asked T if she would bring Molly over to meet his wife, which of course she did.  T told me that the woman hugged Molly and just cried on her for quite some time.  Molly didn’t budge and just provided this mother with the therapy she needed in that moment.

I can’t imagine how this couple felt meeting Molly.  I can’t imagine how it would feel to be in T’s place.  She told me that Molly had touched a number of people over the month that she was away, but this was by far the most significant.  I can’t figure out how this story makes me feel.  Does it scare me? More than I can imagine.  For obvious reasons, but also it scares me that I could run into this couple or another just like them and be faced with it in person.

C overheard the conversation and asked me about it later.  I asked if it made him worry and he said no because B (our old Animas rep) had diabetes for “a really long time and nothing like that’s happened.”  I wish that were enough for me.

This disease is not just about chasing numbers and trying to achieve your goal A1c.  It’s about keeping your child (or yourself) alive.  It’s praying that everything you’re doing works without ending in tragedy.  I know this isn’t an isolated story.  I have heard way too many of them.  We cannot afford to live in blinders thinking that in this day and age our kids will end up just fine.  It’s not a fair to the families who’ve done all they can and who’s kids weren’t ok.

Silly Questions

Once a year we travel to UCLA to meet a special team of endocrinologists that C’s insurance, evidently, trusts more than our own.  They do a thorough overview of C, his diabetes, his pump settings, A1c, etc.  They ask a million questions and then submit paperwork to our insurance that a)Yes, we’re taking care of his diabetes, b)Yes he does need all that stuff you’ve been paying for.

When I’m filling out the paperwork this one question really sticks out to me.   Like, seriously, is there a weirder question to ask on medical paperwork regarding a child on insulin??

Yes. Countless. Eat Sugar.

You Are Getttttting Sleeeeeepy

Last night we couldn’t shake the lows, or maybe the “too-low-for-bed”s.  A 65 at bedtime got 24 carbs of ice cream.  3o minutes later a 59 got a juice box.  20 min later he was 96.  Cool, removed pump and he took a shower.  Came out 40 minutes later bg 87.  I lowered his pump to -50% and he had some popcorn.  Normally I wouldn’t dream of keeping that 50% for more than 2 hours TOPS, but I can’t wake up to alarms anymore.  It’s like my brain is so used to hearing them that it just doesn’t care anymore.  Sometimes I’ll hit snooze for 2 1/2 HOURS before I realize I was supposed to get up!!!  After that much alarming, I feel like I didn’t get a wink of sleep.  Anyways, I left it at -50% for four hours. JUST IN CASE.  When I finally did get up to check he was 386.  Not cool.

Two weekends ago the plan was to do night basal testing.  I set alarms for every 90 minutes for the entire night.  I woke up in the morning and realized I didn’t get up ONCE!  What the heck?!?

 

So.  The plan?  My mom’s on the hunt for a hypnotherapist for me.  She’s going to find one that can hypnotize me to wake up when I hear the alarm.  Not only that, wake up feeling refreshed.  I’m pretty excited.  She got hypnotized when I was a baby to quit smoking.  They had her picture picking up one of those gross spit pots (like in an old saloon) and drinking from it every time she thought of smoking and it worked!

 

What if this helps?!  It could be the greatest thing for a D’rent ever!  Wake up easily? Feeling refreshed?  Sounds freaking great.  I’ll be sure to update when she finds my miracle-worker.

 

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.

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.

highs, lows and nights

Highs, lows and nights.  I hate ’em all.  I also hate making changes to C’s pump.  It’s just never simple.  I love when the doctor does it. 

This time, she was content with his numbers and only wanted to try to change his carb ratios slightly and one of his overnights.  I didn’t agree.  I thought his overnight change was too much and his daytimes definitely needed a change.  Anyways, night (12am-4am) went from 0.55/hr to .60/hr.  When I got home, I compromised and put it at .575/hr.

He woke up the next morning at 58.  I’d actually turned it DOWN to .55 from .575 about 2 weeks ago when he woke up at 45.  Needless to say he’s back at .55 but we need some normal nights to see if that’s even working.  Normal meaning I’m rested enough to actually wake up to my middle of the night alarms and check.  oops.

The other problem is he’s going really high around lunch time.  He was being sent home over 400 a few weeks ago, I made some changes and now he’s typically in the 200s.  I didn’t know what to do next because about 1/4 of the time, he’s low at the same times.  Doctor didn’t want to change either.  Ughhhh.  Soooo, I changed them again realizing I had the weekend to see if he went low or not.  So the breakdown is this.  Same night basal. First thing in the morning (4a-8a) it’s higher, mid-morning (8a-11a) is higher, lunch and dinner get more per carb.  I had my fingers crossed yesterday that he wouldn’t go too low, too many times.  I warned him to keep checking because he doesn’t feel many lows lately until they’re about 50.

We kept checking the last being 3pm and things were actually still highish, but nothing crazy.  5 pm he made some scrambled eggs for dinner and tested at 560.  HUH?!  Washed hands and tested 2 more times.  522 and 502.  Fuuuuuck.

Corrected (more than I’m ever comfortable giving), changed cartridge/site (was due for change anyways), retested in an hour, still over 400, corrected again.  Took shower, tested, corrected again.  At this point it’s coming up on bedtime and I told him, “I gave you an awful lot of insulin.  I’m afraid you might go low tonight, want to sleep in my room?”  He didn’t…  So I told him to double-check there was juice on his nightstand and remember to use his doorbell  (which has only been used once) if needed and set lots and lots of alarms hoping at least a couple might get me up.

About a minute later, E runs in very excited and says, “I get to sleep in C’s room tonight!” and runs out.  I wonder if C actually thought it out and decided he was safest having someone with him or if he invited him subconsciously.  Either way, if he doesn’t want to stay in mom’s room, I’m glad he’s got someone to keep him feeling more comfortable.

D-Sib Day

Well, Alexis and Sherry have proclaimed today to be Siblings of Diabetes Day.  I figured I’d write about E, but have been so busy it hasn’t gotten done.  I’ve hardly even been on a computer.  Good thing is, it hasn’t been because of diabetes.  I’ve been working, playing with the kids, eating Thanksgiving dinner, going out, you know… living?

Anyways, it’s today and it’s 10:30am right now.  My little E is still snoozing.  In  MY bed.  I cleaned up his mess that he’s scattered all over my living room this morning while he was nice and cozy.  I guess I’ll call that his special treatment today?  Poor kid.  Honestly, we don’t celebrate much around here though.  There’s too much always going on to add in any extra.  We celebrate Christmas, but everything else is pretty minimal.

My sweetie really is, just like most siblings thrown into this life, an amazing supporter of his brother.  He makes it near impossible for C to feel alone.  E loves to test.  Under 100?  You’d better believe he’s going to call it low and demand some candy…  E always checks to be sure foods are gluten-free.  There are a few things in our house that aren’t.  If E has those, he’s always sure to eat on a placemat on the far end of the bar to make sure crumbs are kept under control.  He likes to know how many carbs he’s eating.  Sometimes I realize he also suffers from ‘diabetes-brain’ when he notices things that remind him of a test strip, or a blue circle, or a glucose tab, or mentions what number he thinks a lancet would have to be on if his little cousin had to test

On the trampoline, when suddenly C lays down and can’t get off, E’s extra loud voice is heard screaming for me as he runs inside to get a juice box.  E has a pack on his bike that he keeps a roll of glucose tabs in just in case.

After our pump trainer left last January, E was the first to get excited enough to stick an infusion set on (not inject though) and wear that pump for the next hour or so.  E tells everyone he meets about diabetes and celiac disease.  Like everyone else’s ‘other’ children, he knows all the science, real words and possibly every fact that I know about them both and always surprises people with his knowledge.  It warms and breaks my heart at the same time.  Sometimes, when C wants to go somewhere without me, I feel fine about it as long as E is there.  I know that in an emergency E would know exactly what to do or how to explain the situation to someone who could help.

Because we’re a part of a local group that tries to get together monthly and most of the kids are much younger than C, E actually has a number of good friends living with diabetes as well.  Some have it themselves, some have a sibling with it and some have a parent with it.  It’s all very normal to him.

No, we’re not going to do much celebrating, but E is always told how proud I am of him being so supportive.  C is often reminded how lucky he is to have E on his side and even though it’s not that often that he shows it, I know he’s thankful for him.