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.

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!

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]

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.

 

The Look

My dad had a look when I was growing up.  I remember if you pissed him off real good his eyes used to look like he was going to turn into a werewolf and kill you.  It used to scare the shit out of me.  I was sure, growing up, that he might kill me one day.  When I got older I realized that my uncle (his brother) can do the same scary look with his eyes.  I’ve also seen it in my sister.  I think I might have it, too.  Sometimes I can look at my kids and don’t have to repremand them.

C doesn’t normally hide his diabetes.  He keeps it right out in the open and doesn’t seem bothered by anyone noticing.  However, he recently started playing on a basketball team and does not want to test or have his pump show in front of them.  I haven’t really addressed it, but have reminded him a few times that nobody will think twice about it.  In the meantime, we test before going in, remove the pump for the game (not to hide it but to prevent his going low. Normally along with -50% and hour before and after playing), and retest after the game.

Last night he was high before the game and I decided to correct even though he was about to play.  Normally I don’t since playing will drop him so much, but he’s been having some stubborn highs this last week.  Halfway through the game, I was feeling really nervous about where his number was at and brought his meter over to him on the bench.  There was another kid sitting next to him.  Coach (who is a 6th grade teacher and has had T1 students and is quite understanding) says, “Oh great, are you going to check him?”  I told him I was and his response was, “Ok, let’s take him over there to the bathrooms to do it.”  I looked at him and didn’t know what to say.  However, it was one of those moments where I think my eyes did the werewolf -I’m going to kill you- looks because he immediately changed his mind and said, “I mean, can he do it right here?”

“C tests wherever he happens to be.” was my response.  I went back to my seat and laughed at the idea that I just gave someone the look.  I felt a bit empowered by my family’s genetic gift.

BG was 247

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.

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.