Missing the in-between

We are going on day 5 without our trusty dexcom, and I have to say I'm handling it better than I had expected. After being bombarded with a constant stream of information for almost 1 1/2 years, my world has become a little dimmer. Finger pokes allow only little glimpses of what is happening in Elise's body.

I won't lie to you... It has been really hard. Especially in the middle of the night when foggy, sleep-deprived brains are trying to make decisions.

We pulled our sensor on Friday, after four days of the dex giving us the middle finger by way of the ???. On the last day, I think we got 3 full hours of actual data (not consecutive hours, mind you). Friday night to Sunday afternoon were awful due to two pod failures. I miss correcting and seeing that downward arrow to let you know that it's working.

We've had a run of bad luck with our pods... we went through 7 this weekend (not all of them made it onto Elise's body). When we'd get a working pod, we would see some beautiful numbers... although having lived with the CGM for this long, I have to wonder what's going on in the in-between.

As of now, we have no plans to put it back on anytime soon. With the addition of the pod, Elise's skin is a MESS. There is just no real estate left on her tiny body.

But I miss it. Who knew one could love a piece of technology so much?

I'll take it

This is Elise's BG from about 3 am until 9 am today. I wish it were about 100 points lower, but note the bea-u-tiful flat line. And that, my friends, includes breakfast.

Joanne... making breakfast her bitch since 2010.

BG Nirvana

Things have been going so terribly BG-wise the last few weeks, I thought I would take the time to celebrate today.

That huge spike and drop you see is dinner last night. She goes crazy high and them plummets back down. I'm slowly trying to figure it out

Oh sure, I was up three separate times last night to deal with a low blood sugar, but we started off the day at 151, and that's the highest she's been so far. Her BG today has ranged from 80 - 151. Aside from that spike, that's a pretty good-looking 24-hour graph.

Even better, that first mountain (more like a hill) you see in this pic below is Elise coming down while she's eating her breakfast. Note, there is no post-meal spike. Ha, I totally made breakfast my bitch today. Dinner... you're next.

post-breakfast

If I don't get off this coaster soon, I just might vomit

As I was perusing my D-Mom and D-Dad blogs a few days ago, I noticed a common thread... there are a lot of us riding the glucose roller coaster right now. And I'm wondering what planets are in alignment to unleash this hell upon us.

For us, it started off with just dinner problems; we had to start giving Elise her insulin about 25 minutes after she started eating because if we gave it any sooner, she would drop low, we would have to give her some fast-acting carbs, then she would sky-rocket from all the extra carbs.

But it's still not a fix... as we watch the CGM we see that she holds steady while she's eating (once we had a record 45 minutes steady BG, she didn't start rising until after she had finished eating). We usually give her the shot as soon as we see the slanted arrow up appear. Unfortunately with this method, we get double arrows up into the 300s, then double arrows down. All in the span of an hour. If I give it any earlier, she crashes.

Tonight, she was 151 going into dinner. I gave her 1.5 units for almost 40g of carbs. She held steady for 25 minutes and started to go up. I gave her the shot, and in 30 minutes, she's almost at 300 with double arrows up. I looked at the CGM 20 minutes later and she's at 179 with double arrows down. And 15 minutes after that, she's 96, double arrows down. She's 84 via her meter, so I give 7g. Now I'm just waiting for the spike to happen (and it will).

My brain is so fried from trying to figure this out. This issue only happens at dinner. Her ratio at dinner is now over twice what it is in the morning. I think our next step is to go back to diluted insulin at dinner time. I can't stand to see the peaks and valleys on the CGM, but I'm too afraid to take it off of her for fear of missing a crash.

I have never felt this helpless, useless, and downright hopeless before. Nothing we try has worked. And it's got me in a funk. I think we've had smooth sailing for so long, I don't have the capacity to deal when I can't figure it out. If you've been reading my blog for awhile, you know that we don't bother with the CDEs at our endo because they have proven themselves useless time and time again. Talking to them would drive me to tears.

Thankfully, we do have an endo appointment in 9 days. But I don't think I'm going to last that long.

Maybe if I ask nicely...

Dear Diabetes,

I wonder, do you have a pact with the universe to bring it at the most inopportune times? To kick us when we're down? Do you see us in difficult situations, call up the universe on his cell phone and tell him, "it's go time!"

Because that's what it seems like to me. Realistically, there's never really a good time to deal with you when you decide to rear your butt-ugly head. But really, some times are better than others.

Like, why do you decide to crash Elise's BG while I'm nursing and alone? Kinda hard to treat a low BG while you have a baby attached to your boob. And do you know what happens when you pull the baby off in the middle of you milk letting down? Milk shower for everyone... YAY!

Or take for example the other night... it's just me, all by my lonesome, and it's time for Elise's BG check, snack and shot. Mattias also needs to eat and is getting quite fussy. So I check her BG, make her snack, prepare her shot, then settle down to feed Mattias while she eats. For some reason, she decides to get upset about something, drop her yogurt all over the carpet and then start to scream. Which freaks out Mattias; he stops feeding and starts to cry. Then spits up all over me and the sofa. And then refuses to feed.

Meanwhile, I have no idea how much of her yogurt Elise has eaten, how much is now on my carpet, how how many carbs I need to replace. Seriously... do you find situations like these humourous?

Or how about this past Friday... date night. I use the term "date night" rather loosely since dragging 2 kids and three bags o' crap to dinner with you, is in no way a date. But it's okay, because someone else is doing the cooking.

So why, 30 minutes after dinner, is Elise's CGM telling us her BG is 48 with double arrows down? And why while we're driving? Do you know how hard it is to check a BG while in a moving car? Of course you do... that's why it happened this way. And why, after stuffing 20g of smarties and fruit snacks in her, does the CGM still read LOW with a slanting downwards arrow? And why won't Mattias stop SCREAMING?

Look, all I'm asking for is a bit of a break. I'm tired. I'm beaten down. I'm stressed and I'm sad and I'm struggling. I just need you to go sit in the corner and behave for a bit, okay? Please?

Thank you for your attention in this matter.

Sincerely,
Joanne

Please come back to us Eileen

She was only with us a few short months, but we quickly came to love and depend on Eileen. She was our eyes when we couldn't see. Our ears when we couldn't hear. And saved our butts more times than I can count. Sure her whining grew tiresome at times, especially in the middle of the night. But as scarce as sleep is around here, I would give up a week's worth just to see her arrows and numbers once again.

Eileen left us tonight at 9:23 pm CST admidst beeps and shutdowns and failure messages. She gave us one final message: Err Code: 16R0F2D93c. I just wish I knew what it meant.

Okay, I'm sort of trying to be funny here, but this really, really sucks. And because I seemed to have pissed off the universe in some way, Dexcom shipping is shut down for the weekend and they won't be able to send us a new receiver until Tuesday.

I foresee a lot of sleepless nights in our future...

Shut up Eileen!

Dear Eileen,

I love you. I really, really do... but you are kind of pissing me off today. Both my babies are napping and all I want to do is sit on my nice cushy bum, and catch up on some blogs.

You know, while eating my bon-bons and watching my stories.

But for some hostile reason, you think it's okay to beep "LOW" every 10 - 15 minutes, making me get up, run upstairs and hit the "OK" button.

If Elise really WAS low, I'd be ever-so-thankful. But she's hovering right around 100; dipping below every other update or so, which in turn, sets you off. Showing me that she's 99 with a flat arrow really doesn't do much for me. Then, she hops over the 100 mark, only to dive back to 96 (again, with the flat arrow), causing you to grumble (vibrate) and shriek (beep) at me some more.

So Eileen... please to shut up. Unless you have some real news, just sit quietly on Elise's shelf like a good little CGM.

Love,

Elise's pseudo-pancreas

P.S. I guess I should offer my begrudging thanks for alerting me to Elise's nasty low during her nap yesterday. I suppose I can forgive this little transgression today.

P.P.S. You know I really do love you right? Sorry I'm such a cranky pants.

Cuddle Time

This is what I saw when I walked into Elise's room at about 11:30 pm the other night. She was snuggled up with her CGM pal, Eileen. Awwwww, how cute, right?

Except that when I grabbed the receiver to see what her number was, and saw the "grey box of death". Yup, my darling not-quite-three-year-old has figured out how to stop the sensor. Greeeeeat.

It made for a very long night.

What's going on?

It's been a weird, wild and wacky couple of days. Starting with the night my husband fell down the stairs and Elise puked.

The next day (Thursday) she woke up at 179. We did everything as we normally would, except about an hour after Elise ate her breakfast, she said she didn't feel so good. Eileen says everything is A-okay in the mid-100s, but a quick finger poke says 132.

Did you catch the part where this is one hour post-meal? Yeah, she should be MUCH higher than that. Except she wasn't.

I calibrate Eileen and head off to open gym. When we get there, Eileen starts beeping her head off. Quick poke... 48! Crap-on-a-stick! To make a long story short, it takes 33g EXTRA (on top of her 15g snack and 25g lunch) to get her above 80. Her post-lunch number is 108. I give her a pre-nap snack, thank God for Eileen and put Elise down for her nap. Everything is great until right at 3:00, when BAM, her BG shoots up to 310. I guess all those extra carbs caught up to her.

Fast forward to today. Elise and I are so, very excited because we're meeting Tracy and Matthew for lunch. Elise wakes up with a bg of 174, and again we do everything as we normally would. About one hour after breakfast, Eileen starts screaming LOW again. Finger poke... 48. Crap-on-a-stick and holy déjà vu!

I start stuffing Elise with carbs and head off to lunch after I get her BG up enough. Another long story short... today it takes 50g of extra carbs (on top of lunch and snack), and she never gets any higher than 99 (pre-nap number).

Because of what happened yesterday, I'm a bit leery about giving her a snack before her nap, but I do anyway. All is well until I walk into her room to check out her CGM. I notice a smell. A very bad smell. Elise has thrown up all over her bed, and is sleeping in it. Oh. Dear. Lord.

At this point she's only been asleep for about 30 minutes, so I do what will surely get me nominated for Worst Mother in the World... I let her continue to sleep in a puddle of her own vomit. My reasoning is this... better she be covered in vomit and well-rested, than covered in vomit and cranky. Right? Can I get a holla? Anyone?

All this to say, aside from meeting Tracy and Matthew, it's been a pretty sucktastic day. Elise has been amazing through all of this. The weird thing is, she's not acting sick. She's her usual sunny self. She has no fever, no ketones... just these crazy low blood sugars, throwing up, and just for fun; a few bouts of diarrhea. Thankfully, she has an appetite and will eat and drink, although we've drastically reduced her insulin amounts until whatever this is has run it's course.

I'd be remiss if I didn't add how much fun it was to meet Tracy and her AMAZING son Matthew. I was wondering how the dynamic of a 3 year old girl and 9 year old boy would work, but Matthew was so sweet with Elise, and she stuck to him like glue the entire time. I think her hero-worship started when she saw Matthew do his shot at lunch all by himself.

Tracy was so much fun to chat with, and I am so glad she made the long drive over my way to meet up. Thanks guys for bringing some fun into an otherwise Terrible, Horrible, No Good, Very Bad Day!

Parting is such sweet sorrow

Today we met with the CDE from Dexcom to give the CGM back. Despite fleeting thoughts of not showing up and instead running off to Mexico where the CGM and I could hide out together for the rest of our lives; in the end I did the right thing and returned it.

Although we did stay up all night, just talking and cuddling.

All kidding aside, the trial went great. I am so surprised at all the abuse the sensor took, and STILL survived 6 days. Elise wore it in a wading pool, while using a slip n' slide, fell in some mud which coated the adhesive, and it survived three baths! Elise actually didn't want us to take the sensor off!

Here's my take on the Dexcom...

The Good

• Oh those lovely little arrows. Going up, or going down? With her regular meter, we never knew, but with the CGM we were able to determine just what her BG was doing. This was heaven-sent during the night, when we would see a BG of 100, but with an up arrow. No need to stuff unnecessary carbs in her.
  
  
• The trending. Seeing just what does happen to her BG after meals. Being able to feel confident in giving her insulin 30 minutes before her meals; knowing that it wouldn't drop her low before she ate, and would prevent a huge spike afterwards. Being able to see that her rapid-acting insulin starts working in about 30 minutes. Watching the N peak at about 3 hours. Confirmation that what I suspected (Elise's N peaking twice) was true.
  
  
• We found ours to be surprisingly accurate to her meter. I know a lot of people see big differences, but for us it was close. I'm sure it differs from sensor to sensor and site to site, though.
  
  
• The wonderful peace of mind at night, which leads to more sleep! The low/high alarms! We did not cut out night checks altogether, but did substantially cut down on them.
  
  

The Not-So-Good:

• How close the receiver had to be to Elise in order to pick up the transmitter. I swear, sometimes it went out of range if I even stepped between Elise and the receiver; which I think is just it's way of calling me fat.
  
  
• The size of the receiver. To an adult, it's no big thing. But to an almost 3 year old, it's a big piece of equipment to haul around. I think it's easier for boys, because most of their clothes have pockets, but for a little girl who loves her dresses and skirts, it was a hardship. She did pretty good at carrying it around in a purse, but more often than not, she would put it down somewhere and forget where it was.
  
  
• This may sound weird (and it's NOT a bad thing... just a bad thing for ME), but the information we were able to glean from the CGM. There it was in black-and-white, exactly where we were failing. Yes, we did see some sweet straight lines, but there was a lot of spiking and dropping. And for a perfectionist like me, it's a slap in the face. With her regular meter, most times we see nice even numbers because we're checking her at a time when her BG has already come back down from the spike. But with the CGM, you see that BG rise, then subsequent fall. And while that's nice information to have, I still can't figure out how to avoid the spikes. And it's driving me crazy knowing that it's happening.
  
  
• For some reason, baths made the number on her CGM show up as really high. Like last night, the CGM was showing above 400, but a quick check of her meter showed 270. I'm not sure if this is a common thing, or why it even happened (the same thing happened every time we bathed her).
  

So that's my report on the CGM. If you're contemplating one, I hope it was helpful!

So I think I'm in love...

Because I am a hormonally-charged, pregnant woman; I am allowed to change my mind at the drop of a hat, do a total 180, and proclaim my undying love for this beautiful machine.

Wanna see why?

These readings are from 6:00 pm until 9:00 pm tonight, and includes her post-dinner numbers. Pretty, no?

Since we calibrated this marvelous collection of microchips and other things I don't understand, we've seen a pretty straight line; numbers from 112 with a spike only up to 260 (post bed time snack, after she fell asleep).

I love that I now know that our idea of giving her her rapid acting insulin 30 minutes before dinner stops the 7:00 pm spike.

I love that when I checked her pre-dinner number on her regular meter, there was only a 2 point difference from the CGM (the most we've seen so far is a 40 point difference and the Dexcom was the lower value).

I love that when she slept until 8:15 this morning, I could leave her knowing full well her BG was okay.

I love that I got more than 4 hours sleep last night, waking only once at 3:30 to look at the CGM, the do a quick check to make sure it was telling me the truth (it was).

I feel as giddy as a school girl with my first crush.

Of course, if it does anything to tick me off, I reserve the right to dump it's ass quicker than you can say hot flash.

That did not go well at all

Today was our much-anticipated start of the CGM trial. The best part? We got to do the training with Jessica, Justin and Liam. I thought it would make it easier for Elise to have her friend there.

Liam had the sensor placed first and was a total rockstar. It gave me great hope when all he uttered was one "ow!" Elise watched the whole thing and did not seemed disturbed by it at all.

Until it was her turn. Unfortunately, we were doing the training in a meeting room of a library, and I'm sure the entire building heard Elise's shrieks. I was trying very hard not to break down, but it was awful. There are no words to describe what that does to your heart when you hear your child cry like that. And Elise is not one to cry easily either.

She did calm down after the sensor was placed, but has since told me that she doesn't like the "thing on her leg". Especially at naptime. We also had an issue with the receiver (user error, not the product), so we're STILL waiting to calibrate it. Liam's is probably already spitting out readings. I'm jealous.

So we'll see. It definitely hasn't gone as well as I had hoped, but maybe when it actually starts working I'll be a little more enthralled.

Updated to add: Okay, after a few hiccups, we finally got it up and running. I have to admit, it is addicting and all I want to do is stare at it. This may or may not have something to do with my mental capacity as of late. And Meri, you're not out of the loop... we're doing a trial with Dexcom to see if this is something Elise will tolerate; it's not the hospital trial.

An update to my quandary

Fred and I have decided not to participate in the trial. Although we really, really, REALLY want to, it's just not the right time for us to sign up for something so intensive.

I spoke with the CDE in charge, and just getting to the part where we would be randomized (meaning we find out which insulin we'd be on), it quite a process; including 3 3-hour office visits where they would take history, draw blood and do some other tests. It just doesn't make sense to go through all that only to back out if we get in the Lantus group.

And as far as not wanting to try Lantus, well, Fred, Elise's endo and I are sort of all in agreement on this one... if it ain't broke, don't fix it. Why would we switch from an insulin that is (for now) working for us, and only having to give three shots per day; to an insulin we are totally unfamiliar with and Elise having to endure at least 4, possibly more shots per day?

All we really want to do is what's best for Elise. And I think sticking with what we're doing is what's best. And while I am very sad we don't get to be a part of the study (the total nerd in me was really looking forward to it), I feel confident we've made the right decision for us.

Now my new mission is to find out if our insurance will cover a CGM. I spent almost 3 hours (added up, over the day, not at one time) on the phone with them yesterday; getting transferred from person to person, being put on hold etc., and STILL don't have an answer. FRUSTRATING!

Those of you with little ones that are using a CGM, how did you work around the fact that they're not approved for kids under a certain age?

NUMB3RS

Numbers. Our whole life revolves around them now. Units of insulin, carb grams, weight grams, BG, time she got her shot, ketones, number of hours since we last tested her, carb factors, time she ate. You get the idea.

These numbers are so important in the well-being of our children. But sometimes we are hit with a number and we just don't know what to do.

The number (or numbers) in the case were, 128... her BG. And 2:30 am... the time. Yes, 128 is a good, solid number. But where was number headed? Up? Down? Staying level?

To know that I would either have to be psychic, or a CGM. I have a hard enough time as a pancreas, so there is no way to know.

When that number popped up on Elise's meter the other night, I blinked several times. Then I shook it. As if it were a magic 8 ball and I didn't like the answer it had given me. And then I stood in Elise's room for about 5 minutes, trying to figure out what my next step was going to be.

It's times like those that have me seriously contemplating getting a CGM for Elise. In fact, it's number 1 on my "discussion list" for our next endo appointment. As much as I don't want to hook Elise up to any device 24/7, something has got to give. If I could have some peace of mind of what her BG is doing in the wee hours of the morning, it would make all the difference in the world.