Adele's toe part deux

Happy Canada Day !

We're looking forward to the day off work tomorrow to be able to celebrate living in the best country in the world. There's no vacation from the Type 1 game though. 24/7, 365 days a year. It's a crazy game that we're expected to play with no breaks whatsoever. What other choice do we have?

Adele is still on the Continuous Glucose Monitor (CGM). Sensors have been lasting 5 to 6 days lately. Monday nights have been sensor insertion night for the past few weeks. We need a full night in order to freeze the skin, insert the sensor and calibrate. Hopefully it will get better, but right now it's basically a full night.

Last night we inserted a new sensor (and an infusion site insertion and a new insulin reservoir in her pump). The last one had lasted until Sunday afternoon so we had been doing finger pokes since then. The insertion itself was the best so far. Adele was all excited saying that it didn't hurt her at all. I had cut a small dressing to keep things in place while still allowing breathing room for her skin. Adele finds that it itches a whole lot after a few days (not so good when we're trying to keep it on for 6). After that was when the problems started. The pump kept giving us BAD SENSOR errors. After about 2 hours of restarting the sensor and still getting errors, Adele started to cry. She loves the sensor, but was afraid that we had gone through the whole insertion for nothing. I ended up calling the Medtronic helpdesk. The Medtronic support lady stepped me through what I needed to do and we finally got the sensor to start reading glucose levels. Adele went to bed at that point as it was 9 pm. I calibrated around 11 pm and went to bed. The pump alarm woke me up at midnight with a Calibration error alarm. We got up at 2 pm and did a finger poke since the CGM was still not working. This morning I tried again and got it to work. It started reading just before we left the house. I'm glad we didn't remove the sensor and kept trying. Adele was very, very happy when she glanced down at her pump and saw her sugar. I was very happy as well. The pump asked for a calibration in the early afternoon (as expected) and I managed to step Adele's caregiver at daycare through the calibration process.

Now back to Adele's toe (ingrown toenail). It was better following the oral antibiotics, but seemed to have gotten worse a few days after finishing the antibiotics. Adele complains that it hurts and her sugars had crept up as well. Here are the game highlights for the past 2 days...

Monday, June 29th

1:50 am -> 18.4 (way too high, gave 0.6 units insulin)
7:15 am -> 9.8 (a bit too high before breakfast)
8:45 am -> 11.6 (too high before am snack, ate and bolused with 0.8 units insulin)
10:15 am -> 4.2 (dropping very fast, gave 17g carbs to avoid low)
11:15 am -> 4.6 (low avoided before lunch)
2:00 pm -> 7.9
3:10 pm -> 10.0 (a bit high before pm snack)
4:10 pm -> 21.1 (way too high, not sure why it shot up like that, gave 0.9 units insulin)
5:00 pm -> 21.o (still way too high, corrected aggressively before supper, 2.6 units insulin)
7:00 pm -> 7.9 (finally coming down, but will it come down too much?, ate evening snack, bolused with 0.8 units insulin)
8:35 pm -> 18.0 (apparently it won't come down too much, gave 0.7 units insulin)
9:30 pm -> 20.0 (still not coming down, gave another 0.7 units insulin)
11:00 pm -> 9.8 (now it's coming down, but I hope that it won't drop too much, shut off pump for 1 hour)

Tuesday, June 30th

2:00 am -> 8.9 (good for night, didn't do anything. Thanks Type 1 gods, we can sleep!)
7:15 am -> 10.2 (too high before breakfast, ate and bolused with 1.9 units insulin)
8:45 am -> 14.3 (too high before am snack, ate and gave 0.6 units insulin)
10:15 am -> 12.8 (still too high, gave 0.2 units insulin)
11:15 am -> 10.3 (too high before lunch, ate 2.1 units insulin)
1:00 pm -> 10.2
3:15 pm -> 7.4 (very good before pm snack)
5:00 pm -> 9.1 (a bit high before supper, ate and bolused with 2.4 units insulin)

The high sugars on Monday night may have been the cause for the difficulties encountered setting up the CGM sensor. Today's sugars are better than yesterday. Maybe her toe is getting better? We'll see...

JDRF Annual General Meeting

Picture of my feet standing on the glass floor of the CN tower. It still freaks me out just looking at the picture...

This past weekend, I attended the JDRF AGM in Toronto. It was amazing! 100 to 150 people dedicated to find a cure for Type 1 Diabetes together made for a very strong and positive vibe. I found it very inspiring to be amongst such a group of amazing people who have stepped up to the plate to help accelerate the cure for Type 1 Diabetes instead of feeling sorry for themselves. Interacting with others who truly "get" what it is to live with Type 1 was very good for the morale and provided me with lots of hope for Adele's future. And it has motivated me to continue to fundraise. This Type 1 thing is not going to go away by itself, it's up to each and every one of us to help make it happen...

It was very exciting to hear about the artificial pancreas project at one of the AGM presentations. This is a closed loop system in which an algorythm automatically makes insulin delivery adjustments based on continuous glucose monitoring readings. If the algorythm predicts that blood glucose is rising or will rise, then it reacts by delivering more insulin. If the algorythm predicts that blood glucose is dropping or will drop, then it reacts by delivering less insulin (or even none at all). This is still a few years away, but very exciting nonetheless. We also heard about glucose-responsive insulin which is only active in presence of glucose, a drug that seems to halt the destruction of insulin producing islets in early onset Type 1 Diabetes, a drug that seems to protect the eyes from the devastating effect of long-term diabetes as well as trying to find way to stimulate the body to regerate new insulin-producting islets. These are all very exciting research projects that show that funds raised for JDRF really are leading to discoveries that help all playing the Type 1 game achieve better control.

As far as our day-to-day gaming, Adele's toe is better. The infection is gone. But even as her toe was healing, her sugars kept creeping up. Technically this should have been the opposite. On Thursday we found out what was causing this rise. She woke up with a cold (sore throat, fever and cough). Yep, that'll wreak havoc on sugars ! Even if Adele's cold symptoms have gotten better, her sugars still seem to want to creep up. I've managed to somewhat keep things under control by modifying insulin scales throughout the day which translates into more insulin. Today was a good day. Here are the details...

1:00 am -> 13.2 (too high, gave 0.6 units insulin to bring down)

7:10 am -> 3.8 (too low, I guess the 0.6 units of insulin last night may have been too much, also decreased morning insulin basal rate from 0.55 units per hour to 0.5 units)

7:55 am -> 6.7 with one arrow up (gave 0.3 units to avoid future high)

8:45 am -> 5.8 (very good before am snack, she ate 14 grams carbs, gave 0.1 units insulin)

10:15 am -> 7.0 with one arrow up (0.1 units after snack was not enough, gave 0.4 units insulin to avoid subsequent high)

11:15 am -> 7.2 (very good before lunch, she ate 51.1 grams of carbs, bolused 1.9 units insulin)

1:15 pm -> 8.4 (did nothing)

2:15 pm -> 7.9 (gave 9 grams of carbs, still 1 hour before afternoon snack)

3:15 pm -> 6.9 with one arrow up (i guess the 9 grams one hour ago wasn't necessary, ate afternoon snack, bolused with 1.1 units insulin)

5:00 pm -> 4.1 (pump gave low alarm since sugar was below 4.5, gave her a Dex4 at daycare to avoid low before arriving home, supper and 2.6 units insulin)

7:00 pm -> 6.3 (very good before bedtime snack, ate 62.4 grams carbs, gave 2.2 units insulin)

9:00 pm -> 7.9 (looking at graph her sugar was dropping and snack bolus was about to peak, shut off her pump for 1 hour to avoid low)

10:00 pm -> 7.7 (low avoided)

10:30 pm -> 8.3 (rising slowly, hopefully not too much, 9.0 is our target at bedtime)

All these numbers are from the Continuous Glucose Monitor (CGM). After 2 days of finger pricks, we inserted a new sensor last night. The CGM indicates rapid blood glucose fluctuations by either one or two arrows either up or down. These helped me today to keep things in check. We'll see if Adele's body keeps cooperating. I predict that I will need to back things off later this week as she really gets rid of her cold... We'll see.

The power of a toe

First and foremost, I would like to personally thank everyone who organized, participated and fundraised in last weekend's Telus Walk to Cure Type 1 Diabetes. It really, really means alot to me and my family. The final number for the Moncton Walk was a total over $220,000 ! Again THANK YOU !

Next up, the Mike's Bike Shop Cyclebetes 200km bike ride to Cure Type 1 Diabetes on September 12th, 2009. I can't wait !

As far as Type 1 gaming, we're currently on day 3 of Adele's 5th Continuous Glucose Monitoring (CGM) sensor. The insertion is getting better and better. Adele didn't even cry this time! She is one brave little girl. No errors so far either. I wouldn't really say we're on a winning streak at the moment, but we're starting to get better and better at the CGMing aspect. Adele really appreciates the freedom from the finger pricks that it gives her when the system is well calibrated and working like it should and we really enjoy the low glucose alarms. It's too bad that more Type 1 gamers can't afford the CGM tools...

As of last weekend, Adele's blood sugars have started to creep up. She wasn't sick, less active, eating more or less at different times of the day. What was causing this sudden rise? Sometimes it can't be explained. As I have mentioned before, the body is a very complex system. Any little thing that would go unnoticed by a non-diabetic will show itself as blood glucose fluctuations in someone playing the Type 1 game. For Adele, this little thing turned out to be an ingrown toenail that started to become infected. It wasn't enough to stop her from doing all of her everyday activities, but it sure wreaked havoc on her sugars. Here are some highlights from Monday...

Monday, June 8th, 2009

12:45 am -> 16.2 (too high, gave 0.6 units insulin)
5:05 am -> 19.9 (way too high, gave another 0.9 units insulin)
7:10 am -> 12.1 (too high before breakfast, corrected before her breakfast)
8:30 am -> 13.1 (still high before gym class at school)
9:30 am -> 10.5 (still high after gym class, I guess she didn't run enough, corrected before snack)
10:50 am -> 10.1 (not going down enough, gave another 0.3 units insulin)
11:50 am -> 11.9 (still high, corrected again before lunch)
1:30 pm -> 12.7 (still high, gave 0.1 units insulin)
2:45 pm -> 13.6 (going up again, gave 0.4 units insulin before she got on the bus)
3:50 pm -> 14.8 (seems like it just won't come down)
5:30 pm -> 17.7 (way too high, corrected before supper)
7:40 pm -> 20.8 (even higher now, corrected really aggressively and changed her infusion site - catheter under the skin that delivers insulin just in case the old one wasn't working)
8:40 pm -> 20.4 (not going down, gave 0.4 units insulin before she went to bed)
9:30 pm -> 17.0 (at least it's going down now)
10:50 pm -> 14.9 (still too high, gave another 0.3 units insulin)


A full day of high sugars due to a toenail!! Things seem to have settled down a bit now since I have made many changes in her insulin scales. Insulin amounts that would surely have given her a serious insulin reaction a few days ago are just enough from keeping her from going high now. I need to be careful though because this is going to switch back at one point and I'll surely need to back things off as her toe gets better. When will this be? I have no idea, but I do know that it will eventually happen. We'll see what the Type 1 game has in store in the upcoming days...

Keep on trying...

As I started to write this post, we were starting day 5 on our 4th CGM sensor. We were going to try to keep this one going for 6 days. I have spoken to a few people and they have been successfully keeping their sensors on for 6 days without problems. The 3rd sensor only lasted 4 days. Last Saturday, after swimming, I reconnected Adele's pump (she can't wear it in the water). Once the pump started reading the sensor glucose values it began to beep. The alarm indicated that Adele was low. It said her sugar was 2.9. I asked Adele if she felt low, she said no, but then maybe. I checked with a finger poke / meter and she was 17.4 !! Major difference. The blood glucose level (finger poke) is always more precise than the value in the interstitial fluid (CGM sensor), so the 17.4 was the right answer (but not a good blood glucose value - way too high). I'm glad that I didn't treat the 2.9 with more sugar, it would have made matters much worse. I tried recalibrating after this for about 3 hours and kept getting BAD SENSOR errors, so we decided to remove the sensor and go back to the old school method of finger pricks. I was away Saturday night until Sunday around 8pm, so we didn't have time to insert a new sensor before the beginning of the week.

On Monday night, both me and Michele were home, so it was time for a new sensor. Adele was very anxious of the insersion needle, but understood that it was worth it since she wouldn't need to be finger poked the next day during her school field trip as well as the rest of the week. After another very tense moment just before the needle insertion, Adele said it wasn't so bad this time around. She said it only hurt a bit after it was inserted, then it was OK. We were quite happy with this progress. The pump began reading the sensor signal and I thought we were in business, but after about an hour, the pump could no longer read the sensor signal. We were getting alarm errors. I tried restarting the sensor, but it didn't work. This was just before Adele's bedtime and she was getting tired. She began to cry thinking that we had done the whole insertion for nothing. My last resort was removing the dressing that was covering the sensor. This is tricky business, since you only must remove the dressing (clear, transparent, very thin sticker that keeps the sensor in place) and not the sensor itself. After removing part of the dressing, I gently pushed the transmitter towards the sensor to make sure they were connected properly and it fixed the problem. The dressing was on too tight and it had pulled the transmitter away from the sensor and caused it to not work.

Finishing writing this post after Adele's swimming this morning, her sensor got messed up again. I could not recalibrate and was constantly getting Calibration Errors. It was the end of this sensor. That's the 2nd one that got ruined after swimming. We got 4 1/2 days out of this sensor and are back to finger pricks.

Adele's sugars have been high all afternoon. I have been double correcting and still couldn't bring them down. Here are the highlights:

12:00 pm -> 16.4 (this was right after swimming, gave 1.0 units of insulin)

12:45 pm -> 16.3 (still too high, corrected again, ate and gave more insulin to cover lunch, 2.1 units of insulin total)

2:40 pm -> 16.1 (still too high, gave another 0.7 units of insulin, no food)

3:40 pm -> 17.1 (still going up even after all that insulin, gave another 0.8 units)

5:35 pm -> 16.5 (still too high, it just won't go down, changed her infusion set, corrected, ate and gave more insulin to cover supper, 1.9 units of insulin total)

7:00 pm -> 7.4 (finally Adele's sugar has started to come down, maybe it was the old infusion site that wasn't working properly?)

We're still not giving up on the Continuous Glucose Monitoring. We're not risking inserting a new sensor tonight since Adele is swimming again tomorrow morning. Maybe tomorrow night or Monday? I need to keep searching for something better for Adele. Improvements will not happen by never trying new things and taking risks. She really likes her CGM when it is working as it should.

Looking forward to the Telus Walk to Cure Type 1 Diabetes tomorrow!

Thanks for reading...