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.

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.

 

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.

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.

lessons taught… by sleepless me

I’m averaging 3-4 phone calls from C a day from school telling me every reason under the sun why he’s not feeling well and needs to come home. I work, mind you.  And my work gave me more hours back two weeks ago. So far I have not been able to work these extra hours due to my children’s Dr.’s appts, sicknesses, Spring Break and crazy phone calls from the Health Office at school.  It’s getting old.  These are the times I wish we were a two-parent household so that somebody else could deal with at least half of the shenanigans.
This morning I heard, “Mom, I don’t feel good.”
My response… “Me either.  Just like you, I feel like crap every single morning. But every morning I get up, get dressed, go to work and get on with my day even though I don’t want to.  You feel like this every day, you don’t have to tell me anymore. You don’t even have to call me from school anymore to tell me.  When I’m at work, I know that you likely are feeling like crap at school.  If you absolutely need me, call.  Otherwise, I’m out of ideas for you.”
And Mom of the Year goes to….

Lower Lows and Losing Insurance to Boot

I’m up late.  This is way late for me.  I’m in the middle of another battle with C’s lows.  He was at 90 before bed.  I gave him a bowl of ice cream with caramel topping.  About 18-20 carbs.  No insulin.  Thirty minutes later he tells me he’s low.  45.  Here we are back to around 90…7 juice boxes later.  He’s refusing to eat or drink anymore because he’s “full.”  So, I’m testing him every 15 minutes for now to make sure he’s moving upward instead of pulling another U-Turn and going back down.
While sitting here I noticed the mail is still on my desk.  One piece is a notice from Medi-Cal.  It’s telling me that they’ve dropped my children’s health insurance coverage because I’m making too much money.  This is really hard for me.  Here’s my long boring story.  I need to rant apparently.
My kids were on Healthy Families for years.  It’s regular insurance but with lowered rates according to your income.  It’s great insurance.  Then, when C was diagnosed with diabetes we found out that they don’t cover chronic illnesses, so we get referred to another program, California Children’s Services, that covers everything related to that.  It’s amazing.  He has 100% coverage and so far the only thing they haven’t approved is CGM and that’s ok (for now).  Then, my hours at work dropped due to 1) the economy wreaking havoc on my job 2) me missing lots of work due to Dr. appts and illnesses.  That’s when Healthy Families needed my annual renewal information.  I promptly received notice that I did not make enough money for the program and would be referred to Medi-Cal.
I receive money from Unemploment for the hours I’ve been cut at work.  Unemployment has a lottttt of paperwork to deal with in these times and sometimes it takes a very long time to receive your check.  Sometimes it doesn’t.  I didn’t receive any money from Unemployment in December or January.  In February, I received all three months worth in a matter of weeks.  This happened to be the month that Medi-Cal wants all of my info for their review…  Of course.
So, it looks like I’m rolling in the money according to February.  I got my letter today stating that I’m over the income limits and as of March 31st, my children will no longer be covered.  So, I guess I move forward and reapply for Healthy Families.  But now, if I don’t get extra checks the month that they want to see how much I make, they’re going to deny me and refer me back to Medi-Cal.  It’s such a stupid cycle to be stuck in.  It’s annoying enough with no medical issues, but throw in Diabetes, Celiac and all of the blood work, Dr.’s appts and supplies and this is just about overwhelming.