Scary Things – Part 1

I’m not sure what is going on these past few days but I am feeling a bit off balance.

Sunday:

On Sunday, Angelina ate some robin eggs for breakfast and then we decided to get buffet brunch around 11am.  Dexcom was reading just under 400 BG in short order.  So, of course I pushed some correction and set a temp basal to bring her down.  She decided she was going to wash the car so she donned her swim suit and a bucket full of soapy water and went to work.  We decided to bolus for her basal rate for an hour since I really didn’t want her going without an hours worth of insulin when she was already so high.  But I also didn’t want her insulin pump getting wet either.  Of course as soon as she went outside her Dexcom went out of range, but I wasn’t worried.  She came in about an hour later looking for a towel and decided to take a warm bath with her bathing suit still on.  I finally looked at her Dexcom and told her she needed to get hooked back up to her pump.  Dexcom was reading around 150.  As always, it took her a while to decide to finally get out of the tub.

David and I were playing Rock Band and she came and sat on the couch by him (I was across the room) and said she wanted to play.  I looked over at her and told her she needed to put her pump back on, but could she please check her BG to see how things were.  As she was opening her meter case I could see her hands shaking from across the room.  Dexcom said 114.  Meter said 49.  So I said “Check again.  Your fingers are waterlogged maybe they’re just too wet and the drop was diluted.”  Second test: 45.

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Gave juice, calibrated Dexcom.  It was then reading about 55 but quickly started going back up. An hour later I got the alert that she had double up arrows and BG was high, 256.  What.the.eff.  Pump was back on at this point. Hm.  Decided to give it a minute for arrows to level out, and check a few minutes later and reading was slightly lower and arrows had leveled out so no correction.

Everyone went back about what they were doing. Angelina decided to play Rock Band on her own after David and I quit.  I was on the computer and decided it was time to start dinner and realized the house was quiet.  Dexcom showed her BG at 110, but I thought maybe she had gone back outside so I asked David to find her and check on her while I got dinner started.  He comes into the kitchen and says “She’s in her bed, sleeping.”  Which made my d-mama senses tingle adn I said “Okay, we need to check her BG”.  Took meter into her room and checked: 45.  Seriously?!?!  Calibrated Dexcom.  Rechecked: 34!  Meanwhile David had gone to grab a juice box.  When I shook her to have her drink at first she didn’t respond and she hadn’t woken up when I checked her BG so I felt panic rising up in me.  Fortunately then she opened her eyes and took the juice from me.  We calibrated the Dexcom (again!) and it wouldn’t accept the 34 BG reading and just came up with and a blood drop.  I tried entering in the 34 again but it wouldn’t accept it. (It didn’t dawn on me until later that it wouldn’t take it because the Dexcom only reads between 40 and 400 and the 34 was too low).

She finished her juice and I said I would be back in a few minutes to check her again.  I went about trying to get dinner ready and realized I was missing an ingredient so I sent David to the store.  After he left Angelina made her way into the living room and was sort of drooped in the recliner.  I asked her how she was feeling and she said “I just feel so weak.  It was really hard to walk in here from my room.”   At that point the Dexcom started reading again and said she was in the 60’s.  So, I did another fingerstick and BG was around 110.  I went back to making dinner and let her recuperate on the couch.

The dexcom seemed to be okay after that but I was a bit wary to trust it.  She took a shower just before bed and she said “Mom, can we just change my sensor?  It hurts.”  So we started over.  Called Dexcom and a replacement should be arriving sometime today.  However, that meant we did a sensor change at almost 10pm and her blood sugars were wonky all day.  I finally ended up getting to bed around 1:30 am.

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Hang Low-ver

Thanks to Diabetic Danica for the term.

Angelina got sick a week ago.  Nothing major just a cold.  Yeah, right.  Every illness seems to be major when you have T1D.  She woke up last Thursday complaining of congestion and had a very low grade fever, but it was only a half day and she had her endocrinologist appointment anyway so I kept her home from school.  She just kind of hung out with me in my bedroom all day as we are having workers replace all our pipes and I have been sort of barricaded off in my bedroom while they are in and out of the house. Blood sugars were okay up until it was time to go to the endo and then, of course, she was high.

The endo appointment went long because I was going off about what has been going on with her school and that subject is something that just sets me off lately.  On the bright side, endo has agreed to attend a meeting at her school so we can get everything squared away and the endo can write orders that meet everyone’s needs, and the school nurses needs for everything to be phrased just so.

A1c result was lower than I was expecting since we have seen quite a few overnight highs lately – down to 7.2 from a 7.8 in November.  Turns out the overnight highs that I was attributing to growth spurt/hormones/delayed highs from dinner was really that her midnight basal rate was MUCH lower than her evening basal rate, and I never really noticed since her settings report (and trend lines) are all linear starting at midnight and running to midnight without looping back around.  So, I didn’t notice that midnight setting was so much very lower than the evening setting before it.  Dr also tweaked her carb ratios a bit and jumped her daytime ISF from 100 down to 75 (!).  I can’t really tell how well any of it is working yet though because with illness (even minor ones) comes the need for much more insulin and/or lots of highs, and then possibly lows and yo-yoing blood sugars from trying to figure out just how much extra insulin she is going to need at any given point during the day or night while she is sick.

The last time she had a cold she was still in honeymoon and we saw her insulin need increase by about 50%.  She was not on a CGM at the time so I didn’t feel really comfortable being more aggressive than that as I was afraid of her going low, especially at night.  Since she is on the Dexcom now (which is amazing, btw!) I can see what her blood sugar is doing every 5 minutes so I felt free to increase her insulin to my heart’s content and was able to get her into her target range for a good portion of the day.  I started her out with the 50% increase, but she was still up in the 300’s, so we went to 75% increase- still high.   100% increase (so twice as much insulin as usual) and still not able to get her below approximately 225.  Since the temp basal program on her pump only goes up to a maximum of 100% increase (or 200% of normal) I had to program in a whole new basal program for her.  To be safe, I programmed it at about a 50% increase and then did an additional temp basal on top of that.  About 70% extra at home, and a 20-30% increase when she finally went back to school on Tuesday.

Well, the problem with this is that a temp basal can only be set for a maximum of 24 hours and it doesn’t give an alert or anything when it’s finished.  On Tuesday night I forgot to reset it for the higher amount before bed so I got woken up at midnight to a “HIGH 300 mg/dL” on the Dexcom.  It was at that point that I realized I had forgotten to reset the temp basal.  So I did correction, set the 70% increased temp basal and went back to bed and figured the Dexcom would wake me up if there was a problem.

No alarms during the night, and at one point I woke up and her blood sugar was hovering around 175 and I though “Great! She came down nicely.  The correction should have finished by now so we should see an in range number first thing in the morning.”  And then around 6:45am, shortly after David had left for work I woke up out of a sound sleep and grabbed the Dexcom.  It said she was 87!  Now, 87 is a little below range for her, but still a perfectly acceptable number.  It was just a little surprising to see her blood sugar had continued it’s downward trend so many hours later still.

I got up to go check her blood sugar and meter says 60.  Okay, well, that’s a bit unexpected.  I try waking her up and she just kind of pulls the blanket tighter.  So I grab juice since it’s the easiest thing to try to get a sleeping child to swallow.  It took a little coaxing but she finally drinks the entire juice box and we settle in to wait.  Keeping an eye on the Dexcom I’m starting to get a little concerned because it’s going down instead of up.  I have seen the Dexcom have some trouble coming up from low readings to I am just hoping that it’s that.  But, after the 20 minute wait I check her BG again and it is now down to 53, 1 point off of the 54 that Dex is reporting.

20140213-101935.jpgWell, it seems the juice didn’t work so well…  She’s still sleeping but maybe I can get her to chew a few glucose tabs.  I grabbed another juice box, just in case, but tried to wake her again.  I ask her if she will chew a glucose tab and she nods so I put it in her mouth and she makes an initial chewing motion, but then nothing.  When I tell her to chew she just looks kind of bewildered so I say “Okay, let’s try more juice.” and have her spit the unchewed glucose tab into my hand.  Waiting game is on again and I start to see the Dexcom finally creeping up…72, 83, 96. Yay! It seems we’re in the clear.  Finger stick reads 124, and Dexcom is only a few points behind.

Of course now it is actually time to get up for school.  We go through the usual “I don’t want to wear that.  Why aren’t XYZ pants clean? (maybe because mom isn’t a mind reader and didn’t know you wanted to wear them today?)  I don’t know what I want for breakfast”, etc.  And then she says “Why do I feel so terrible?  I have a headache and I feel sick to my stomach.”  I said, “Well, you were low.  You just had 2 juice boxes and you probably need to eat something.”   She just blankly stares at me and says “I was low?”  She then notices the glucose tab, in pieces, sitting on the entertainment center and says “What’s that?”  To which I reply “That’s the glucose tab you wouldn’t chew.”  She had absolutely no recollection of being low, or drinking juice, or not chewing the glucose tab, even though this had all happened just 30 minutes before.

She says “I feel terrible.  Can I have ibuprofen?  Is this what a hangover feels like?”  And, thanks to Diabetic Danica, I replied “You’ve got a hang low-ver”.

I don’t know what it feels like to experience hypoglycemia in the way Angelina does.  I’ve had a handful of hangovers in my life (usually from wine), and I can’t help but feel incredibly sad that at 10 years old my daughter knows what that feels like, and not from alcohol.

Her blood sugar levels were amazingly in range the rest of the day, except for another brief excursion into the upper 60’s after lunch, which then resolved itself (she didn’t even notice it until I said something after reviewing her Dexcom when she got home from school).  So, for now, I have discontinued the extra temp basal, but she is still on the basal profile that is giving her 50% more insulin than usual.

Today she is on a field trip.  I am hoping that everything goes smoothly and she has a great time.  Next week: school meeting with the principal, district nurse and the endo.

The Dexcom Saga Has Ended. (Hopefully)

We received Angelina’s Dexcom via FedEx on January 21st. Hooray!!!  Went through the quick start guide and watched the tutorial while putting in on her first sensor and everything went really well.  It took a bit more force to push the transmitter on with the little clip thingy than I was expecting, which means that I also pinched her skin harder than I should have and she yelled at me.  However, the process was pretty simple and not so painful (aided greatly by EMLA cream).  Dexcom was up and running 2 hours later and we started the beautiful, beautiful data stream.  Of course, diabetes decided to play dirty that night and she was reading about 300 at midnight.  Fingerstick says she’s 260ish, I think?   Okay, it’s only been 6 hours since it started, we’ll chalk this up to first 24 hours adjustment period, still within 20% at those high of numbers.

And then Dexcom continued to alarm high every 2 hours throughout the night.  We used the enlites back in November and one of Ang’s complains was way too many alarms (especially false ones) so I set the Dexcom up with very conservative alarms – 75 for lows and 300 for highs with no fall or rise rate alarms.  I also have her high snooze set for 120 minutes since her active insulin time is 2 hours.  So, every 2 hours that night I got woken up by Dexcom, got up, did fingerstick, gave corrections.  This may sound like a bad thing.  But it was WONDERFUL!!  Not so much that she had a continually stubborn high overnight, but that the Dexcom actually woke me up, and not only that but the furthest it was off after that midnight reading (which I re-calibrated for) was 9 points!   At blood sugar levels of 300+ being 9 points off at most is AMAZING.  Because, seriously, even with her meter (which has a 15% accuracy rating) when her blood sugar is that high, 2 consecutive fingersticks in the same time period may be off by more than 9 points!  I was amazed!

Our experience continued like that and I cannot sing the praises of the Dexcom highly enough.   And then, on day 7 I get a phone call from Angelina at school.  “Mom, something is wrong with the Dexcom.  It says ‘call technical support’ and has an error code.”  At this point I can hear the thing alarming (really loudly!) so I asked her if she could go into the menu to shut down the receiver.  But, apparently when there’s an error you can’t do ANYTHING, so I had to go to school.

I called Dexcom and was directed to reset the receiver.  It vibrated and then continued with the error screen.  At which point I was informed they would overnight us a new receiver.  A week after we got the first one.  Seriously.  I sadly took the receiver home with me and felt a sense of panic that Angelina wouldn’t have it the rest of the day.  Especially since the day before she had a low of 65 at 1:45 in the afternoon and only knew about it because of the Dexcom.  If you’ve read my previous post about what’s happening at school, then you would know that the nurse has decided that Angelina no longer needs an end of the day blood sugar check since “she’s usually high at that time” and those checks will no longer be done after Jan 31st.

So, that was Tuesday.  I took the receiver home and about an hour later decided to try to see if I could reset it again.  It worked that time, so I called Dexcom and was told they were still going to send a replacement since it shouldn’t be doing that and the fact that it wouldn’t reset earlier was concerning.  When Ang got home from school I went ahead and reconnected her and readings seemed to be pretty accurate.  Of course, she was high because at the end of the day check she was 130 (which is pretty great for her!) and the health tech decided that was too low for her to go on the bus with.  Rather than calling me, she went ahead and gave her a snack and a juice.  She was 220 when we got Dexcom back online.

We went out for dinner and she had a cheeseburger and french fries from Red Robin.  I didn’t think much of it until a couple hours later when her BG started climbing.  I did some correction around bedtime and dexcom showed that she was starting to come down a little.  I went to bed and figured it would wake me up if she went higher.  Well… I woke up a few times during the night and peeked at the Dexcom, which showed she had drifted down and was pretty close to target so I just let it be.

Wednesday morning I got up and Dexcom said she was 169.  Fingerstick said 250.  If trend graph was to be trusted that meant that she had been around 75 pts higher the entire night and actually had gone over 300 at some point, but dexcom didn’t register it.  I decided to pull the sensor and send her to school without it.  Fedex delivered new receiver around lunch time!  I then got a phone call at the end of the day that Angelina’s blood sugar was 104.  I said that was fine, but Angelina insisted that she felt like she was dropping so she had PB crackers (with insulin) and got on the bus.  Of course she was pushing 200 again when she got home.

Then we got her new sensor in and new receiver all hooked up and life went back to our new normal.  This new sensor doesn’t seem to be quite as accurate as the last one, but it could just be new sensor jitters and it hasn’t learned her yet.  Looking forward to smooth sailing from here on out. (At least until we have to deal with Edgepark to reorder sensors)

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.