We’ve been using the newest technology in the pump/cgm world for about 4 months now and here are my opinions.
It’s accurate. When TJ wore both the guardian sensor and the Dexcom G5, they were both (usually) pretty close to finger pokes. I feel that the guardian caught the lows a little faster and that the g5 recognized the highs faster. In my opinion the guardian sensor was just as accurate as the G5 (which was not perfect).
Auto-mode has really leveled out TJs blood sugars. He has way fewer mountain ranges on his cgm graph and lots more leveled out days and nights. In fact his A1c has dropped a whole point from 8.6 to 7.6 in those 4 months. So I think auto-mode is awesome! When it doesn’t kick us out. It kicks us out if he’s high for over 4 hours or low for over 2 hours. It kicks us out if the sensor isn’t reading for any reason (missed calibration, sensor is confused because it’s day 5 or 6 of 7, it’s in the dreaded need bg loop). Auto-mode is not a cure. It’s not infallible. It’s not perfect. TJ still has lows in auto-mode. He just needs fewer carbs to come back up into range-usually 4. He still goes high, if his carb ratio is not aggressive enough, if his insulin gets too warm and stops working, and if his pump site fails or gets infected. (Just my little rant to try to get Medtronic to understand why parents want their kids cgm data accessible via Bluetooth and WiFi–because we still need to see the trends!)
I desperately missed the receiver/WiFi readout of dex during his first basketball game! I had no idea what his blood sugars were doing!
while the sensors are accurate, they are not as easy to use as the Dexcom sensors. Yes, they insert way easier than the harpoon sensors we started with and even easier than the G5, but they are still more finicky and not nearly as user friendly as the Dexcom. Pay attention to the arrows! Only calibrate when steady! If you miss a calibration, you get no sensor info. For us the sensors only last 5-6 days instead of the full 7. Yes, Medtronic will replace them for free, if you call and troubleshoot it with them and send it back and spend lots of time on it. BUT it still sucks that my 9 year old has to get a poke every 5 or 6 days when it should stay in 7 (and we frequently got 14 days out of a G5 sensor).
Also it requires 20-40 minutes to charge the transmitter every time you change the sensor, plus a 2-3 hour warm up period. And then guess what! Once you hit the end of the warm up and calibrate…Surprise!! You will have to calibrate again in 6 hours (or loose all cgm data until you do calibrate). So when a sensor fails at night (which is when it usually fails for us) we will be up again between 1 and 4am to calibrate, depending on how early it failed.
Speaking of calibrating…. with Dexcom you calibrate and it instantly updates-like less than 5 seconds!! With the guardian, it takes 1-4 minutes to calibrate!!! It shows you a little bar so you can see how close it is to being done but seriously, 1-4 minutes!
I guess I’m saying that it’s amazing technology but far from perfect, and definitely not a cure. If another pump company came out with a similar system using a Dexcom sensor, I would switch as soon as we could. Unfortunately, Medtronic has the edge (and maybe it just comes down to finding) on the newest technology, so we will continue to change sensors when they die before the 7 days they are supposed to last and suffer through the lack of data and sleepless nights that occurs because he gets kicked out of auto-mode because that’s what T1D parents do, react to bgs or technology as needed, to give our kids the best chance at being in range and healthy.
That’s what I kept thinking today. This is the last time I will unlock the door and go into this school.
This the the last time I will see the smiling faces of all the friends and work family of the past 9+ years of my life.
This is the last time I will teach these kids.
It’s, probably, the last time I will walk through any school and know 80% of the kids by name.
My last recess at this school.
My last lunch in this lunchroom.
This is the last walk on my lunch/break with Cheryl and Claire.
The last time I’ll walk through the courtyard and see the yellow and blue
At times I wished all I would see/think were what pushed me and gave me reasons to quit in the first place. The frustrations, the poor decisions, the lack of care about my families needs, because then I wouldn’t cry. I would walk out with my anger, feeling justified. But in the end I’m so glad I’m leaving with the love and affection of my coworkers, who will be deeply missed. The faces that made me wait for multiple reasons before I quit, because how could I work in a school without their support? I will definitely miss most of the people that I have worked with over the last 9 years! And still feel a little bad about abandoning my team. But I definitely felt God calling me to move on and he gave me so many signs, that I couldn’t wait any longer. Thank you to all of my work family who may have made me cry repeatedly today, but who showed me the appreciation and affection that all the other drama had blurred out. 💜
God gave me another sign of reassurance today too. 😊
Seeing this little rainbow on my way to work just helped me feel (once again) that this is all part of the plan. I’m so glad, even through the sadness of leaving behind so many, that I’m on track and doing what is best for my family. 💜
This Christmas Eve and Christmas are different from any previous Christmas we’ve spent as a family.
We started our Christmas Eve doing some yoga. I actually got the boys to join me (although TJ really needs to work on his form 😜) and G really seemed to enjoy it.
We did a little shopping, and then went for a walk on our local trail. My parents dog got to go for a walk too (she’s staying with us for a little while again. 😊) G had to wear his dads jester Santa hat all day. We made it all the way to the second bench! My plan was to wear these boys out, so they would nap, and it worked! After lunch both of them actually slept during nap time! But I also wore myself out, and didn’t get much done.
When they woke up we watched Christmas movies while we waited for Dad to get home from work. We were planning to go to a Christmas Eve party with Tony’s Family before heading to church. But Mother Nature had different plans. It started snowing!
TJ spent the rest of the evening outside playing in the snow.
Except when he came in for dinner, once Tony got home. After driving home in the snow, Tony didn’t think it would be safe to go visit his family, especially since it was still snowing. So we stayed in, and continued watching Christmas movies (except for TJ). The boys got to open their Christmas Eve gifts at home (for the first time ever). They got new PJs, an activity book, and a small toy.
They wore their new pjs to church, in the snow. We went to a local Roman Catholic Church, so we could get there and back safely. Then it was back home to put the boys to bed, so that St. Nick could visit. Tony and I finally made it to bed at 1 am with a quick prayer that our boys would sleep in past 7… and they did! Or at least right around 7, which is sleeping in (for our early risers). I popped breakfast in the oven and kept the boys out of their presents until our Christmas visitors arrived. We had Grandma, Papa, and Madrina spend Christmas morning with us, opening presents, going through stockings, and eating a yummy breakfast. When they headed home to get ready for the rest of their day, we got geared up to play in the snow!
That dog loves to catch snowballs!
And we had a fun snowball fight! Then we got ready to visit the rest of my local family and have Christmas dinner. The Boys even got to play a couple of games with Papa and their cousins! It was nice visiting family, a very yummy Christmas dinner, and we made it home before 6pm.
It was a magical White Christmas! The first white Christmas since I was a kid, that I can remember. I hope your Christmas was wonderful too!
We got sensors! So I called and scheduled a training with the Drs office. TJ is currently wearing 2 CGMs a Dexcom G5 and the new Medtronic guardian. I’m curious to see how they compare.
The boys had fun before the training playing on a clinic computer.
I didn’t think to charge the transmitter, so our appointment ended up being over an hour. But we got it figured out. 😁
The rep was impressed that I started up the 670 pump on my own without training-I just put all the settings from the 630 into the 670, no big deal! But she did review and adjust some of his pump settings in addition to getting it all set up for the cgm.
the boys got to play on tablets while I was adjusting pump settings and taking with the rep. 😜 keeps them quiet and happy!
Now that his cgm communicates with his pump, we have a new feature we’ve never tried before: low suspend. Basically, his pump predicts that he’s going to go low, and stops giving him insulin. It already did it today! After we were all done we headed over to the Point Defiance visitors center to turn in coupons for free water bottles (the boys earned them by filling out a field guide on our hikes this summer)
They got their cool new water bottles, and played in the visitor center for awhile.
And then we went to the marina, just a short walk away.
We saw some fish and walked over to where people were lined up fishing, and dropping crab pots. There was a dad, with his kids, there who showed the boys his crab pot, talked about how it worked, and his son even showed the boys the crabs they caught. The boys LOVED it!
While we were learning about crabbing, TJs pump alerted repeatedly because it was time to calibrate the CGM. He ignored it until I told him to clear the alert. 😜 once I dragged them away from the fishermen, and we started driving home, TJ poked and calibrated. It took a LONG time for the pump to calibrate and show a number. In the meantime, dex alerted 150 with 2 straight down arrows. He had just poked at 110, so he must have been dropping fast. I gave the boys each half a pack of fruit snacks and waited to see what happened. About 10 min later the pump alerted and said he was 80 and headed straight down, and started low suspend. At that point dex showed 120 with an up angled arrow, but I just let the pump do its thing. He came back up into range with no spike. And now that he’s eating dinner, he’s on low suspend again (dex shows 82 and steady). He’s having pizza for dinner so it should be an interesting night. 😜 I hope and pray that the guardian is as accurate as I’ve been told and that we are allowed to try out auto mode (the pump adjusts basal insulin all day long, to keep him in range more of the day) soon! If it’s accurate and the algorithms are as good as they say, this could be a lot easier. Unfortunately, it won’t be perfect, there is always a possibility of failure with electronics, and bad pump sites just happen, for no reason, when they are least suspected, but it would be a lot easier-when it works…
A friend convinced me to use her extra ticket and go to my high school reunion. (I wasn't going to go-Tony didn't want to go and I wasn't that interested either) So, I got dressed up, met my hubby at church and then left the boys with him and headed to the reunion
Earlier in the day:
TJ was having high blood sugars all morning, and it was pump site change day. He got a new pump site and dosed for lunch. Then we got in the car to go to church and I gave the boys a fruit & veggie pouch, to hold them over until dinner.
When we got to church, TJ was over 500. That's when I find out he didn't dose for that pouch. 🙄 He dosed for his high and we waited for the insulin to bring him down into range.
After church, I went one way and they went homeward, high blood sugars and all.
Tony stopped and got teriyaki for dinner and then went home to eat it and watch a movie with the boys-Boys night in!
I was at the reunion reconnecting with old friends when I got a text.
I felt bad, tony had to deal with this all alone.
It was nobody's fault, just a part of dealing with technology. His pump site kinked when I inserted it earlier and we didn't know until he poked his finger for dinner and was over 600. High ketones are not good. It meant that he not only needed insulin for his blood sugar, but he also needed extra insulin to get rid of the ketones, plus he needed to drink lots of water.
I trusted Tony 100% with this, as awful as it was, so I continued to have fun at the reunion.
Tony knew exactly what to do (of course! He's an awesome Ddad–or DoD in the DOC 😜) TJ gave himself a shot, had a new pump site put in, and drank water. Tony did do one thing I might not have, he let the boys stay up until 10 pm (they are normally in bed at 7pm!! 😳😱). He kept them up until TJ was back in range.
They got to stay up and watch Star Wars, so they thought it was the best night ever…well…maybe TJ didn't, since he felt awful, but he was happy he got to stay up so late. (Movie photo is from tonight–not Saturday, I doubt they had popcorn)
I didn't find out until the next day, that not only did his pump site fail, but dex up and died too, for no apparent reason. So all in one day, TJ had 2 new pump sites, 1 shot, and a cgm sensor replaced. Which also meant that Tony didn't know what his blood sugars were doing, he could poke and see where TJ was, but had no arrows to show him if he's steady, going down, or going higher–for 2 hours!
Thank God it ended well, this time. Ketones are no joke, if untreated, they can kill a person with Type 1 diabetes. Many experienced families end up in the hospital when their T1D gets high ketones.
For now we are all once again a happy, healthy family.
Our summer has been full of fun and a little worry.We've been walking our local trail almost every day.
And we've tried out a trail that is a little more like a hike.
It has small hills
And precarious cliffs.
We've been enjoying our mornings together!
We have had a few worried moments about G though. He keeps complaining about his tummy hurting or being full when he's hardly tasted a meal. He's been drinking more water (but it's also been hot). He's lost his baby fat and is looking extremely skinny too!
All these things can add up to a type 1 diabetes diagnosis. The good news is, we are aware, and have supplies at home to alleviate our worry (temporarily). That fear is always there in the back of your
mind-once you have a child diagnosed.
We have checked G's blood sugars more in the last couple weeks than we have over the last 5 years! But (thank God) all his finger pokes have been in range.
So we let our worry go, until the next time he stumbles into the bathroom at 10pm looking for a drink of water.
Today was the big day! A 4 hour doctor appointment to find out if G can have eggs without swelling/turning red/uncontrollable vomiting. He hasn’t had eggs since he was about 9 months old because he had an anaphylaxis reaction.
Since then he’s gone from have nothing with egg in it, to having breads with egg, to having Mayo and ranch, to having anything with egg baked in-except scrambled eggs in things. He hasn’t reacted to anything we’ve given him at home, since that first time. But he’s had no egg, no (real) French toast, no fried rice….he’s missed out, right?
It hasn’t been too bad, really. But we thought a 4 hour appointment to determine if he can have them now was worth it. G was a little apprehensive about it though. He cried last night when we were talking about this appointment. That’s when daddy bribed him with an ice cream cone 🍦 for eating eggs at the dr. After 4 years of being told not to eat eggs, now we want him to!
He did pretty well, considering.
But tablets make things so much easier. 😜
I tried my best to make warm eggs available for this. I cooked them right before we walked out the door. I made a rice bag warmer and microwaved it to put the warmed glass dish on while we traveled. But the nurse at the doctors office either put it in the fridge or left it out on the counter during the appointment. 😢 So, by the time G got his first bite of egg, it was cold. But with a bunch of ketchup, and a little coaxing, he ate it. 5 bites of increasing size, 15 minutes apart.
But he ate them all (less than half the egg) like a trooper! And had no reaction!! 🎉🎊🎉
Sweets, playing on the tablet, and reading the classics (peter pan)or Star Wars books.
Favorite song: jingle bells and his own made up songs
This boy is crazy loving! He wants to hug everyone all the time! He’s reading chapter books and learning 3rd grade math skills. He is super smart when he applies himself. Math is no longer his favorite subject, but he’s learning to push through and do what you have to, even if it’s not fun. Despite the amount of clomplaining that goes a long with it, he is a big help around the house: cleaning a bathroom, emptying the dishwasher and loading it sometimes too.
He loves music! He hums, sings, or whistles constantly! He reads our children’s bible every night before bed and wants to collect rosaries. He’s very emotional and takes mean words or actions to heart. He is our sweet helper who’s always willing to give hugs (to family and friends). He’s still my shy boy, sometimes not wanting to talk in front of strangers.
He is pretty tough when it comes to pokes and prods. Even gives himself his own shots when he needs an emergency shot without complaining. The toughest part of t1d for TJ right now is removing the tegaderms that help keep his equipment attached. He’s stronger than he knows!
This boy is pretty amazing! He’s reading sight words and sounding out every word he sees. He’s read some things that have surprised us. He is working with papa on adding and subtracting too. My least favorite things that he says (a lot) are,”that’s not fair!😩” or “He’s not being nice!”
He can throw a tantrum like nobody’s business and is as stubborn as can be. Bribing him with dessert, or threatening to take something away doesn’t change his mind. He pulls one liners out of the air and makes us all laugh.
He still is a bully and loves to pick on his big brother. He can be so loving and sweet and he is my snuggle bug when we watch tv or movies. I can’t wait to see how this independent boy becomes a young man!
It’s been a long time since I’ve written! I was super bummed that we didn’t make it to a pumpkin patch last year, that’s my favorite post to write.
But I started this post to share my scary moment last Tuesday, so here goes.
My boys have swim lessons at our local YMCA, so, I usually drop them with their swim teacher and head to the indoor track to walk around. We make sure TJs blood sugar is in range, put all our things in a locker and go do our things. This day wasn’t really any different, they were swimming, I was off somewhere else in the Y. All of a sudden the fire alarm went off and a voice comes over the intercom saying, “there is an emergency in this building please leave through the closest exit.” Panic attack #1! I have to get to my kids! I go downstairs, and start to walk toward the pool only to find that door closed. I asked the closest employee where the kids in swim lessons would be, she said outside. Great. I go out the front door, and start searching…no kids in swimsuits dripping with water here… oh, they are around the side of the building. I head over there to find them wrapped in towels standing barefoot on the frozen sidewalk (which is covered in de-icer), shivering. G was crying when I walked over. One of the instructors put a towel on the ground for some kids to stand on and that helped their poor little feet a little.
I realized they were alive and well, just before panic #2 hit me: all of TJs T1 supplies were in the building, locked in a locker…and so were my car keys. If he crashes what could I do, I had no dex, and no meter to check his BG. He was in range before swim, but extreme cold drops him, excitement/worry can go either way. And who knew how long we’d be stuck out there?
I kept it together and tried to help the boys stay warm. After about 10 minutes, they finally let everyone back in-a little kid pulled the fire alarm, so no real emergency (Thank God!). They went back to swim lessons, and I went up to the chapel and had a good cry. I’m so glad my fears were unwarranted, that time. But I can’t figure out a good way to prepare for this in the future. Carry his backpack and my keys everywhere I go in the Y? That’s a fun workout. Leave it in a bag, near him while he swims? Sounds like a recipe for wet supplies. I guess I’ll keep doing what I’ve been doing and pray that there are no more emergencies for now. Unless somebody has a better idea?