Type 1 Diabetes (faux) for a day(s)

We were recently fortunate to get a replacement transmitter for Angelina’s Dexcom system.  The warranty period on the transmitters is six months and we had her first once for just over 8 months (since January) when we decided to swap it out for the new, slimmer version.  The old transmitter had been acting a little weird, but was generally still okay, but since the clock was ticking on the new warranty we decided it was time to swap them out anyway.  That left us with an operable transmitter that’s clock was winding down in the diabetes supply cabinet.   We also recently had a small part of plastic break off of her receiver and lost the usb port cover, which is something that is covered under warranty and scored us a nice new receiver yesterday.  I sent her off to school with the new receiver today and an idea came to me… I’m going to wear her spare devices for the next few days.

So, this morning after she left for school I shot myself with a Dexcom sensor.  I’ve worn a sensor before, shortly after we first got her Dexcom, but it was only for about 36 hours and then she decided that she wanted it back.  Since we temporarily have a full extra system I will be able to wear the Dexcom for at least a full week (I could likely wear it longer, but I do have to send the receiver back to Dexcom since it was a warranty swap to avoid being charged $199).  Since I was hooking up the Dexcom anyway, I decided to also put in a pump site – skin tac, tegaderm and all.  And since we don’t have a spare pump lying around I just taped the tubing to the Dexcom receiver since I have to carry it anyway.  This may seem like still not comparable to what Angelina has to carry with her, but when we are together I generally carry her Dexcom receiver anyway so now I will carry two receivers part of the time, while she carries 1 receiver and a pump part time, and then just the pump while I carry 2 receivers.

It’s not really the same as having Type 1.  Because, yes, I’m attached to bionic parts with tubes and tape, but I don’t have to deal with the ups and downs of blood sugar.  I will still be carb counting, because I do that already for Angelina, but I won’t have to actually bolus myself with insulin since my pancreas still kicks it out pretty well on it’s own.  I will, however, be checking my blood sugar a few times a day since the Dexcom requires at least 1 calibration every 12 hours, but I won’t have to check before every meal or if I wake up in the middle of the night.

Wearing these devices will hopefully give ME a sense of awareness though.  That sense of having things attached to me 24/7 like Angelina does and having to be mindful of that when I change clothes, take a shower, or walk past door knobs to make sure tubing doesn’t get caught and sites yanked out.  I’ve placed both sites on my abdomen because I’m home alone and those were the only places I could reach easily on my own.  I considered wearing the Dexcom on my arm like Angelina does, because it makes it visible.  It makes diabetes visible and it causes her to get a lot of stares and people asking questions – sometimes it’s annoying, but it also starts a conversation about diabetes and every conversation about diabetes raises awareness.  But, alas, I cannot reach the back of my arm on my own to place a sensor.  So, my awareness will have to be here.  In pictures

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Swing Life Away

On September 16, 2014 Angelina experienced her first ever concert.  On a school night, no less.  During one of the opening bands she and I decided to hang out in the lobby because I am getting old and the band was just NOISE.  The music was actually okay but the “singer” just screamed random things into the microphone that were unintelligible and ouch, my ears.  Angelina felt the same way, so maybe it isn’t just old(er) age, lol.

As we were sitting out in the lobby a couple came and sat near us and we struck up a conversation.  Apparently the woman was a kindergarten teacher and told Angelina that she had the most awesome mom ever for bringing her to a Rise Against concert on a Tuesday.  It didn’t feel so awesome when I had to try to get her up for school at 7:30 the next morning after we didn’t get home until almost 1am.  Fortunately *cough* her site decided that it wanted to pull out at about the time she finally rolled out of bed and we had to do a site change which gave an “excuse” for being late, aside from “we were out late and she didn’t want to wake up this morning”, which would not be an excused absence.  I only feel slightly guilty for finding some diabetes related thing to make an excuse for tardiness.  But, at least it gave an honest excuse, right?  I know, I’m  a terrible mother.  First I let my kid stay out till all hours at punk rock concert then let her be late for school the next morning because instead of just sticking a new site in, I actually did our normal EMLA cream routine that takes at least an extra 30-45 minutes, instead of telling her to suck it up because we don’t have time for EMLA cream.  Of course, it had more to do with the fact that she had to get dressed and all of that so she might as well have a painless site since she was going to need the extra time anyway.

 

Also, Rise Against was awesome.  This is what her diabetes thought of the concert:

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Last song- crashing!

Last song- crashing!

And, not diabetes related, but concert photos, cuz, yeah!

Ironically closed Hollywood Video in Hollywood, CA

Ironically closed Hollywood Video next to the venue in Hollywood, CA

 

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What has been going on lately?

I never finished my post after Angelina’s cold.  The end of that long, convoluted story (when aren’t my stories long and convoluted?) was that we got her on the medtronic CGM (continuous glucose monitor) starting November 5th.  Insertion was easy, and after the first 24 hours on it a lot of the readings were pretty close to her meter readings.  Of course, the CGM reads interstitial fluid and not blood so it’s considered accurate if it’s within a 20% margin.  Then, we hit day 5 of a sensor that should last 6 days and our entire CGM experience went to Hell in a handbasket.  We set minimal alarms at training so that it wouldn’t be alarming all the time, which can be pretty frustrating when you’re getting used to a new device.  Well, at the start of Day 5 (and by start, I mean 5am) we were getting alarms left and right.  It alarmed that her blood sugar was over 300.  Then it said her blood sugar was going low, then again that it was over 300.  Obviously, her blood sugar wasn’t’ fluctuating that much that quickly (this was all within about an hour) so I tried to restart the sensor as I had seen mentioned in one of the T1 groups that I frequent.  That stopped the alarms momentarily but within a couple of hours it was freaking out again so we decided to remove the sensor and start a new one somewhere else later that day.  

The second sensor was okay.  It never really was as accurate as the first one at any point really.  And we had chosen to insert it on Ang’s backside and it was a bit of a bleeder.  We also found that she laid on it at night while sleeping which caused it to alarm, over and over, every single night.  It also decided to go haywire on Day 5.  We took a day off after that and let her go CGM free.  I have to tell you that those 24-ish hours were torture for me!  In ten short days I had gotten used to looking at it and at least getting some sort of a semblance of an idea of what direction her blood sugar was heading in when we did blood sugar checks.  I never really trusted the thing to give me an accurate number, but at least it was okay at showing me whether she was headed up, down, or holding steady.  

We finally put the third sensor in on her thigh.  She wasn’t happy about that one, but I said “Hey! Let’s try it.”  About 2 hours after the sensor was up and running (so maybe 4 hours from insertion) she caught it on the arm of the recliner and ripped it out.  Quite painfully, I might add.  Again, she refused to put a new one in right away and said she was done and no longer wanted to wear ANY CGM.

So, I dug in deep to some of my groups and reached out to the DOC for help.  One of the moms who I had talked to said her daughter had been using the previous medtronic CGM since 2009 and they had great success with the sensor on the arms.  It was more accurate for them there, it wouldn’t get laid on at night and cause erratic readings and alarms.  It wasn’t likely to snag on the furniture as she walked past.  So… I bribed Angelina to give it another try.

From the word “Go!” the arm sensor was by far the best one yet.  It didn’t give false alarms at night, it wasn’t really in the way.  The biggest annoyance was that Angelina’s pump was the receiver and I kept asking to look at it, which bugged her a bit because it meant I was in her personal space more.  Since we kept having problems on Day 5 I thought maybe it was the transmitter so on the evening of Day 4 I popped the transmitter off and re-charged it.  It was day 7 before we started seeing erratic numbers and alarms and decided to remove that one.

Well, since we had such great success we decided to try the other arm.  For whatever reason, the other arm was the worst sensor yet, aside from the sensor that ripped out on the furniture.  It started out reading over 100 pts different from her meter, and the closest we ever saw it was about 40 pts away from her meter reading.  And then, on the morning of Day 3 I woke up around 5am and went in to check Angelina and the alarm had been going off for an hour that she had a low blood sugar below 40.  Anything below 70 is considered low, and below 40 is really low.  Angelina didn’t wake up to the alarm and I didn’t even hear it until I went into her room and pulled her blanket back to look at her pump.  I did a quick blood sugar check and she was at 95, which is slightly below her target range of 100-150, but still definitely not low and not a concern at that time of the day.  So, I turned off the alarm and attempted to calibrate the CGM to show it that her blood sugar was fine.  

However, even after restarting the sensor it continued to alarm low for over four hours.  I would turn it off and every 20 minutes (the repeat setting we had set at training) it would alarm low again, even though blood sugar ranged anywhere from 95-145.  Finally, we stopped and removed the sensor and I called medtronic to tell them we wanted to return it.  Angelina was to the point that she no longer wanted to wear it.  It had been alarming at school for no good reason because it was inaccurate or had an erroneous reading that wouldn’t be corrected.  She was just done. And so was I.  

So, we sent it back.  The first few days without it were peaceful, but still a little nerve wracking and I still wanted to occasionally ask her if I could look at her trend graph.  I would catch myself and it would be a little upsetting to realize that there was no trend line (not even an inaccurate one) to look at.  So, we decided we definitely liked having a CGM and decided that we would try to order a Dexcom CGM, which is supposed to be more accurate.  It also has a separate receiver which means I can have possession of it and watch her trend line whenever we’re together without having to disturb her.  And, she can wear it in a pouch like she does her pump, so hopefully it won’t get lost when I’m not around.