CGMless gaming

Adele's last Continuous Glucose Monitoring (CGM) sensor only lasted 3 days. It was inserted into her buttock and she was begging to take it out after 3 days because it was very, very itchy. The skin surrounding the insertion site was very red and inflamed. After trying to convince her to leave it in since it was working well, we gave in and let her take it out. After all, it is her body and she's the one who has to wear this thing 24/7. She doesn't have a choice with the insulin pump infusion site unless we go back to multiple daily injections, but she can go without the CGM. This was last Thursday. We wanted to insert a new one for our busy weekend, but we just couldn't seem to make the time for it. Adele insists on freezing the skin with the emla cream before the insertion (this takes like an hour), then the system needs to be calibrated... Anyway, we were running with our eyes closed, back to making dosage decisions using finger prick results only.

Saturday morning was the first swim of the spring session. Adele now swims from 11 am to noon instead of 10 am to 11 am in the last session. This means less active breakfast insulin on board and her morning snack an hour before getting into the water instead of a light snack right before swimming (yeah, I know that you're not supposed to swim until at least 1 hour after eating, but sometimes she just has to eat something to avoid going low). Swimming is a tricky situation. She's disconnected from her pump since it can't be submerged in water and I'm way up in the grandstands for the entire hour, so I can't ask her how she's feeling. A low is really not something you want to happen when she's swimming in 12 feet of water. I'm watching her like a hawk the whole time even if there's nothing I could do if I noticed that she was having a hard time staying above water except maybe shout at the teacher and/or lifeguard. Her sugar was 5.9 (106) when we got to the pool. 15 grams of carbs with no bolus and she was 7.2 (130) after the session, so we nailed it this time. I was still quite anxious during her class though, continuously trying to convince myself that my decision was correct.

That afternoon was the long-awaited meet and greet with Jason Earle (Jackson from the Hannah Montana show). During the 2 hour wait to see Jason, we tested to find Adele's sugar high at 13.8 (248) 1.5 hours after lunch. This could have been avoided with the CGM. We would have seen the rising sugar and could have corrected before it got this high. We corrected and she came down before supper. She was actually low at 3.6 (65).

The next day, she needed 45 grams of carbs prior to her swimming lesson. Her sugar before was 5.8 (104) and 6.4 (115) after, so again we were lucky to nail it. I figured she needed more insulin for her lunch given that the day before she went high, so I changed her lunch insulin to carb ratio. At 2:15 pm, just before going over to her friends house to play, her sugar was 9.8 (176). A tad high, but since she's going to be at her friend's house, on her own in regards to her Diabetes and without her CGM, I decided to not correct and wait and see in another hour. I called her at 3:30 pm and told her to test. She said that she felt low. She didn't feel it while they were playing on the trampoline (had I known that they were trampolining I would have called sooner!). So, I tried to remain calm and let her test. Her sugar was 2.4 Crap ! The CGM would certainly have caught this. I told her to sit down and drink a juice and take a Dex 4 tablet. This wasn't a problem since her body needed and was craving sugar soooooo badly. After her juice and sugar tablet, she said she still felt low and wanted to eat more. I told her to sit and wait for the sugar to enter her bloodstream and make her feel "normal" again. It's not always easy trying to reason with a 9 year old over the phone when every single cell in her body is litterally starving and in desperate need of fuel. When all was said and done, she had taken in 33 grams of carbs. A bit much, but I knew she was safe from the low. I told her that I would call back in 20 minutes to make sure she was okay. 10minutes later she called. She had tested and told me the result was 4.8 (86). She was good for now, but she would likely be high by supper without a bolus for part of the ingested 33 grams of carbs. I guesstimated 25 grams was enough to treat the low, so I told her to give herself a bolus of 0.3 units for the extra 8 grams. I was lucky in that it was the correct answer, her sugar was 5.0 (90) at 5 pm.

Close calls and constant changes are what playing the Type 1 game is all about... We inserted a new CGM sensor last night. It's been accurate so far and a little less scary to now be running around with our eyes open...

The double edged sword and our latest CGM adventure

It's been a while. The last 2 weeks have been quite hectic which explains my blog absence. The first week was due to non-Type 1 Game events that got me quite worked up. I apologize if these frustrations came out here. Sorry Alice. The blog is a medium to blow off steam, I just don't want anyone to feel like they're in the line of fire during my outbreaks. Last week was a longish battle with a cold virus. I'm back this week, and feel the need to post, so here we go...

All Type 1 gamers need heros. They need players that they can look up to. They need role models who are thriving despite and even because of their Diabetes. They need someone that makes them feel less alone. They need someone that gives them confidence to believe that they can do ANYTHING that they set their mind to if they're willing to do the necessary Type 1 Game work that goes along with this success. They need individuals like Chris Jarvis, Sebastien Sassville, Jonny White, Phil Southerland (and the other Type 1's on the Team Type 1 professional cycling team), Kris Freeman, Gary Hall, John Chick, Adam Morrison, Chris Dudley, Nicole Johnson, Nick Jonas and George canyon.

Each of the gamers in this list give other Type 1 gamers hope. I mean, they've accomplished so much in their quest for excellence in what they do. They are world class athletes, adventurers and entertainers. Many, many non-gamers have attempted to get as far without as much success. These individuals have gotten there despite (or maybe because of?) their Type 1 Diabetes. How inspiring ! So, what's the problem? Well, as far as being role models, they're really doing too good of a job. In a way, they're making it look too easy. Google any one of them and look at pics. They don't look one bit like they have a serious life-threatening chronic disease. In fact they look amazing! They appear to be healthier than the huge majority of North Americans. Most "normal" people like me would do just about anything to look and be more like them. They are true winners in every sense. And yet, they'd die in a matter of hours without insulin.

So, what's my point? The success stories are worth sharing and like I said will provide much needed inspiration to the gamers facing the same challenges, but we must not forget the seriousness of the disease and it's implications. I find that too often this is overlooked. Most non gamers believe that Diabetes is always reversible and seeing and hearing about these Type 1 game heros really reinforces this misconception because no one sees what they go through to achieve their goals and thrive the way that they do. The silent Type 1 game struggles and suffering side needs to be shared because most people have no clue what it's like to play this game. And until more people realize what it's really, really like, true awareness is not really happening and we're not accelerating the much needed cure as much as we could. Don't be shy, tell someone your story... Share what this game puts you through... Because without this, we're missing the Type 1 awareness boat.

Our 1 year Continuous Glusose Monitoring (CGM) anniversary is coming up in about a month. The sensors seem to be getting more and more precise. This last batch seems to have about a 1 to 2 mmol/Ls (18 to 36 mg/dl) difference with the meter reading. It does however seem to have a harder time with quickly changing values as well as higher highs and lower lows.

When we first started using the CGM, we set the low alarm to warn us if Adele went low. We weren't using the high alarm at first to avoid adding to the too many alarms that seemed to be going off way too often. Then last month, I set the high alarm to 15.0 (270), high enough so that it should only go off in extreme cases. Last night, when my wife woke up to check Adele's blood sugar at 1:30 am, it was at 14.0 (too high), she corrected with 0.7 units of insulin. We went back to sleep. Then at 4:45 am, we were awoken by Adele's pump alarm. It had been screaming for a while now and the whole pump was vibrating by the time that I got to it. Adele was sleeping. I was surprised when I glanced down to see what the problem was. Her CGM was saying that her blood sugar was 16.0 (288) trending upward. I tested with a finger prick and her meter. The result was 15.7 (283). That didn't make any sense. The correction at 1:30 am should have brought her down. She didn't eat anything. Either she is coming down with something or there is a problem with her site. I really hate changing her site on a school morning, even less in the middle of the night! Then, in my half-asleep stupor, I noticed that something was different. Her pump was not wireless, so why wasn't the tubing attached to it anymore? Crap, the tubing broke right where it enters the insulin cartridge. I had no idea how long it had been this way, but it did explain the high (and still rising) blood sugar. She was not getting any insulin at all. I filled and installed a new insulin cartridge and tube and reconnected Adele to her lifeline. I then gave her 1.2 units of insulin to hopefully bring her sugar down before wake time. She woke up at 10 (180), still high, but much better than the 30ish (540ish) number we would have likely seen had the CGM not caught it. Thank you CGM...