Nighttime Sneak Attack

For the past few months, Bryce has had a lot of anxiety before set and sensor changes making it a long drawn out process that only frustrates us both. A couple weeks ago, I had to do a set change in the middle of the night while he slept because of some highs that would just not come down. My husband and I were amazed at how easy and quick that was. And when he woke up, Bryce was excited to know he had a new set and never felt it. Is this the way to go?? Maybe?

Well this is about one nighttime sneak attack that may have changed the way we do things from now on....

Earlier this week, it was time for a Dex sensor change. We were getting great readings over the busy Christmas weekend so I just tricked it out and reset the sensor. So when we started getting triple arrows right before bed on the 3rd day (really day 10), I knew we needed to change it that night. So I waited till he was asleep. When I went in, he was laying on the wrong side from where I wanted to put the new sensor. I tried to roll him over to get access to his backside (which is the only place he will let us put his sets and sensors) but to no avail...he kept rolling onto his back or the other side. During one of his rolls, his arm was perfectly exposed. Should I do it? I have heard of great results from arm placements but he adamantly refuses to try. But he was asleep. Should I do it? After much debate with myself (and a little talk with the hubby) I decided to try. Those of you with Dex, know that insertion is no easy process to I was nervous he would wake up, freak out, and there would go an expensive sensor to waste. So I took my time. He moved a little when I rubbed the alcohol on the spot and placed the sensor's sticker. When I injected the sensor, he said "Ow, Mommy" but quickly fell back asleep. I quickly disconnected the injector, got the transmitter in, broke off the clip thing, and started up the sensor. When Bryce woke up in the morning, I told him I put in the new sensor, he said he knew that cuz he felt it. I asked him if he knew where it was and he said, "over here" and pointed to his backside. I asked "are you sure?" and he said "you better not have put it on my tummy!!" Told him to check. Decided to not say anything else. Later in the day, he discovered it was on his arm...he was NOT happy. That is, until my hubby told him it made him look like a robot. He LOVED that and thinks it is cool now, even wants to try his pump set on his other arm. And the best thing is, our readings have been more accurate!

Think we have a new way of doing things now...

can't ignore Dex

And tonight he wants ALL our attention!!!

We have been battling highs all day despite many corrections. So hearing double beeps as we went to bed (high or double rise) we were not happy. Dex said 374, really 246 (calibrate)

Hour later, triple beep (low or double fall)...ok, so the insulin decides to finally kick in after midnight...nice! Nope, Dex says 82, really 179 (calibrate) Go to sleep. Maybe half hour later quadruple beep (wtf?) Dex now says 36, really 160. We are really frustrated now! Go back to bed....more beeps!!! '???'....of course Dex can't tell what is going on. More beeps... 'sensor error 1'. Fine, so Dex is not going to cooperate tonight...going to bed. More beeps!!! 'sensor error 0' Whatever!! I give up! But Dex doesn't...more beeps! "YES, I KNOW THERE IS A SENSOR ERROR....SHUT UP!!!" Hubby finally takes Dex and puts him in the farthest room. Seriously! Hope I can actually sleep now.

And to think I wanted Dex so that we could sleep more and test less...right!!!

not sure I wanna go back...

A couple Fridays ago, Dex (Bryce's continuous glucose monitor), said farewell to us with a big exclamation mark and some weird error code. That jerk!

Dexcom FedEx'd a new one out to us that we received last Monday afternoon, after a weekend free of a cgm.

A week and a half later, we still have not put on a sensor and started up the new Dexx. I must say, I don't know if I want to. There is something freeing about not being able to look and see what his blood sugars are doing at any time. It is not like I really ever trusted the number Dex gave us anyhow. We ended up testing him more because of this and to me, that defied the point of having a cgm. Plus I hate having another device attached to my sweet little boy's body. And if I mention putting on a sensor, Bryce runs screaming from the room.

Does this mean I will never use it again? No. I actually am thinking it will be good to have over the holiday weekend with all the food and fun with his brothers and cousins. So I plan to put this new Dexx to the test starting tomorrow. We'll see if this new guy woos me enough to keep him around. He better not lie to me as much as his predecessor cuz I no longer have any qualms about boxing him.

gone to Vegas...???

Last week, Joanne told us how Eileen (her daughter's continuous glucose monitor) decided to up and quit. I joked and said Eileen probably was going to elope with Dex (Bryce's cgm). Well this morning, Dex flashed us his giant exclamation mark with a crazy error code. Thanks man! Hope you and Eileen have a great relationship together! May your replacement be more reliable and trustworthy!

**Dexcom has Fedex'd a new one out that we should get tomorrow...ugh a day with bg 'pictures' and no 'movie'

Naughty Night

Get your mind out of the gutter...this is a D blog people!

Last night, Dex was being feisty. He had been so honest and forthright all day that I think he felt it was time to be naughty when we were going to bed.

We heard beeps and buzzes of all numbers and tones...3s, 2s, even a 4 beep and single beeps!

(for those unfamiliar with the Dexcom cgm, it will buzz 3 times for a low or a fast fall, beep twice for a high or fast rise...not sure what the 4 and 1 beeps were)

Each time we went in (ok, each time my hubby went in...I had a sleeping baby in my arms. Ok, not a baby but a two and a half year old but still!) Bryce was around 160...nothing to worry about. But Dex wanted us to worry. Wanted us to run down the hall.

Eventually, my husband decided to take Dex so he would stop bother us since we knew Bryce's numbers were fine.

But then Dex started beeping at us every few minutes to tell us he was out of range!! At this point, the hubs and I were sleep deprived and angry. In the almost 14 years we have been together, we have only had one or two arguments. Dex managed to add one more to that list. Not sure what exactly we were fighting about since we were both half asleep but it was not a good thing.

When asked what I think about Dex, I have a really hard time answering that. When he is behaving, I LOVE him. When he pulls this $**t, I really HATE him.

failed!!!

Just as we were going to bed last night, Bryce's sensor failed. Good timing!

Damn you DEX! Is it cuz I talked about taking a break from you? Can you blame me? You have been so unreliable...missing those lows (he was in the 50s not 100s!) or worrying me that Bryce was too high (348..really was 217) Anytime I threaten to ignore your lies, you tell me the truth. Then I think we are going to get along just fine. And what do you do? You lie again. Well not this time, this time you didn't even know what to say. ???. That is what you gave me, over and over and over. Then just gave up. Now the question is, when do I give up???

charger

Today was the start of College Football Season (yes, capitalized) It is a huge part of our life as we have season tickets. More on that later....

So what this means is that we are bringing D on the road every time there is a game.

meter-check

extra pump supplies-check

snacks/low treatment stuff-check

extra sensor for Dex-check

scale-check

Well tonight after a wonderful game (72-0), Dex told me I forgot one thing that I can't just run to the store and pick up....his charger! GRRRR!

As my hubby said, we lived years without a cgm, we will be fine for a day or two. True. I probably need this break from Dex anyhow.

Come on now!!

This morning, I woke up to Dex telling me Bryce was low and going down (82, one arrow down). I had to hunt down some test strips cuz of course we were out from the night of testing so by the time I got back, Dex was saying 68 and down. Tested...117!! Really?!!!

So I decided I was going to keep track of all his discrepancies throughout the day....

7:39a Dex 68 arrow down, meter 117

7:53a Dex 90 double arrow down, meter 119

9:34a Dex HIGH (over 400), meter 385

12:20p Dex 234 slight down arrow, meter 180

12:45p Dex 173 slight down arrow, meter 151

2:00p Dex 235 straight arrow, meter 252 ***closest reading of the day!

3:35p Dex 256 slight down arrow, meter 200

5:43p Dex 191 straight arrow, meter 151

6:23p Dex 120 slight down arrow, meter 167

7:44p Dex 60 double arrow down, meter 119

8:30p Dex 216 double arrow up, meter 150

Boy we tested a lot today! Partially cuz I was double checking what Dex was telling me so I could document it. But also cuz we had gone to the zoo and usually he goes low with all that walking. Think the higher numbers today are from being at the end of the set's life. Anyhow, the point is, I can't trust Dex and I don't know what to do about it.

crying wolf

My love affair with Dex is not a smooth one. He talks too much and doesn't always tell the truth. I think he just wants attention. And last night, he wanted it while we were trying to sleep...of course! Problem is, you can't just ignore him. What if this time he really means it? Multiple alarms said Bryce was low (we have him set to go off anytime Bryce goes under 90) but upon fingerpoke, he was in the 120s. We did turn down his basal to be sure and we calibrated Dex too. We even had Dex try to get our attention by alarming with a double arrow up, saying Bryce went up to 149 when he was still only 100 (this was in between all the low alarms). I think Dex was trying every trick in the book...and it was working. He cried 'Wolf', and we came running. But by 3am, we decided we were not going to fall for his tricks anymore. Luckily, we didn't have to make that decision. He stayed quiet (and Bryce woke up at 270!! wtf?) Think we are getting less sleep with Dex than we were before. However, because he has caught a couple real lows in the middle of the night that we never would have expected, we will keep him around.

getting crafty

Yesterday I dusted off my sewing machine (and there was a thick layer of dust!!) and made a couple waist packs for Bryce. One for his new cgm and a matching one for his pump.

The cgm pack I made with a clear front cuz I was tired of having to stop him, pull out the cgm to see the bg and graph, then stuff it back in. He doesn't stand still for long so harder than it sounds. Often I was left with a cgm and no kid. With the limited sensor range, this meant no readings.

I am pretty impressed with myself. It was actually really easy to make...if I only had time and didn't have 3 boys demanding my attention every few minutes, I would bust out a ton of these!

So now Bryce had two devices to carry everywhere with him. Luckily, he doesn't seem to mind.

the start of a love/hate relationship

This week we started Bryce on his Dexcom continous glucose monitor (cgm)...

LOVE seeing his blood sugars graphed out

HATE that the receiver has to be within 5 ft of him to pick up the signal (especially since he often forgets to put it back in his pouch so it is often out of range)

LOVE seeing if he is raising or dropping fast (common) or just holding steady (rare)

HATE not being able to look back at actual bg #s at specific times (graph points not detailed)

LOVE not having to test him so often

HATE that it is another device on his small little body (and another thing to carry around)

LOVE that it alarms if he is going low (or high)

HATE that the receiver is not waterproof/water-resistant (it's summer-he's 5!! he LOVES water! and when he is playing in the water, that is when I want to see his bg#s the most)

LOVE that the sensor stays on for 7days -or more if you"trick" it ;-) but I am surprised it even made it 4 days with how much he plays in the water, that the adhesive is still sticking.

HATE that the numbers can be up to 40 pts off (we've noticed this especially after treating a low)

Hurry up and wait

Our Dexcom CGM was actually here when we got home on Friday evening. I could barely wait to rip the box open and hook it up to Bryce. Knowing I had to read the instructions first, I held back. After the boys were in bed, we opened up our new life-saving device and looked at what we had to work with. While I am so excited to see Bryce's numbers charted out and know if he is dropping fast, holding steady, or climbing, and have alarms tell me if he is low or high, I am really nervous about putting in the sensors. The sensor inserter looks like a torture device. Plus you only get 4 in a box (one for each week in the month) so what happens if I do it wrong?

We had an appointment with our CDE scheduled for this week so we will use it as a cgm training session. Hopefully after that appointment (today), we will be "up and sensing"

Dexcom-take me off this roller coaster!

We have been on a roller coaster ride of bg numbers. Bryce will go sky high after breakfast only to crash before lunch. He has huge rebound highs after treating a low (we treat with less than 15g and he gets bolused for his snack after) We have had such a hard time finding any patterns. His a1c was getting higher and we were getting more frustrated. We were testing so much and each time it was a mystery as to what his bg would be (high? low? who knows?!!) So we started looking into getting a CGM (continuous glucose monitor) Seeing a "movie" of his bg levels instead of "pictures" should be so helpful and hopefully will allow us to make changes to Bryce's pump settings so he will be in range more often.

While the boys were at Camp Harlow, we got the call that insurance approved our CGM and will cover it at 90% :D Our Dexcom would arrive after we got back. Woohoo!!! Yippee! Happy Day!