You know how worried you get when your kid has a sore throat or a fever? A parent of a kid with T1D has an extra level of worry. Not only can blood sugars be too high (or too low-depending on the illness) but even if they are in range we have to worry about ketones.
TJ has been sick today and even though he has mostly been in range, he’s had ketones all day. I’ve been giving him extra insulin and making him drink lots of water trying to get them out if his system, but they are still there. I’ve been trying to bring them down, but they’ve been going up and down. He’s hardly eaten anything (a normal mom worry) but has been getting lots of extra finger pokes (to check for ketones and how high they are).
I’ve texted Tony more times today (while he’s at work) than I would normally. Just letting him know how TJ is feeling, his blood sugar, ketone levels, and what I’ve been doing to get rid of the ketones.
It’s pretty frustrating that the insulin I give him to bring down his blood sugar and get rid of the ketones can kill him if I give him too much. There is no exact science to know how much insulin will get rid of the ketones with out crashing his blood sugar to a dangerous low, so I give some and wait and then give a little more.
I spent the day sitting on the couch with my boys just snuggling and watching movies. My kitchen is a disaster and I haven’t worked on any projects I’m trying to get done. Even now that the boys are in bed, I’m still going up and poking periodically and dosing, but I’m too exhausted to get anything done.
We have been very lucky that TJ hasn’t had ketones very many times and that we’ve been able to get rid of them at home. If they get too high and don’t come down, it means a trip to the hospital. I thank God that we haven’t had to go back to the hospital since his diagnosis.
Sorry if this is just a long ramble. It’s diabetes awareness month and I guess this is my awareness post. It was too long for a Facebook post, so I decided to make it a blog post.
We went to the pumpkin patch!
Went on some fall walks.
And carved pumpkins with Uncle Joe.
We drank hot spiced cider and collected leaves.
Trick or treating with friends was so much fun! We hope you had a wonderful fall, just like we did! 🍁 🎃
We had lots of fun at the event JDRF put on at Oddessy 1 in Tacoma. The boys played arcade games and won tickets to earn prizes. They got to play with their T1 friends and their siblings in a big play area with tunnels and climbing areas. While I visited with some of my Dmom friends who understand how tough life is with T1D.
Having never been to Oddessy 1 before, I wasn’t sure what to expect. I thought it would be a big play area or bouncy house place which meant that TJs blood sugar “bgs” would drop from all the activity. So I put TJ on a temp basal (which changes how much insulin he gets every hour into his body) to 75%-giving him less insulin to keep his bgs higher-hopefully keeping him in range during all the fun.
When we first arrived the boys were given tokens to play arcade games. Then I wondered if I should cancel his temp basal, light activity doesn’t (usually) crash bgs. But I left it, hoping that he didn’t go too high.
A couple friends who have been there many times told the boys about the play area on the other side of the building, so we all headed over there. I sat with my friends and talked while the boys ran and climbed and played. After that they played laser tag and ran around some more. I was glad that I had left his temp basal on at this point because even with it giving him less insulin he was starting to slowly drop. I gave him a few fruit snacks (he splits the pack with his little brother) and then we all headed in to play laser tag! Moms and G (he was afraid to go in with out me) against TJ and his 6 friends. We had fun running around shooting each other, surprising each other as we rounded corners and laughing so hard! The kids won, but they out numbered us, it doesn’t really count right? 😜
The only picture I got that night. Guess I was too busy talking to my friends.
After all that fun we said our goodbyes and headed home (a 45 minute drive 😢 at 8 o’clock at night). That’s when TJs bgs started dropping hard, just as we got in the car.
See where the line turns red? That is when he was double arrows down and 70, a scary place for his blood sugars to be. Luckily we had plenty of sugary treats to catch it before he got much lower. He ate one of his prizes that he bought with his tickets: a sour straw then Dexcom showed him 1 arrow down and he said he was really hungry. I gave a small airhead the JDRF coordinators provided for lows at the event. I’m so thankful they gave us some of the leftover lows treats because I knew where they were and could easily grab them while driving.
TJs bgs came up into range and his temp basal stopped itself (we had set it for 4 hours). We finally got home and the boys were in their beds when I noticed Dexcom showed TJs bg spiking over 200 with a straight up arrow. Then I started wondering if I should dose for his high bg. If I dose him it will bring his numbers back into range, but all his activity earlier in the evening can cause delayed lows to happen while he’s sleeping. If there are no delayed lows he will run high all night long which can also be dangerous.
I decided to not dose him and see if he had a delayed drop from all the fun he had.
Looks like I made the right call (this time). He came down over night and was even a little low this morning, with no extra insulin.
This disease looks so easy from the outside. T1s just count carbs and get insulin and can live a normal life, right? No, that’s just a small part of it. There are so many other things that we have to think about every day and many times we are guessing and praying that we guessed correctly. This is why caregivers and people with T1D burn out they are constantly thinking about T1D and second guessing their decisions. It’s something we think about 24/7/365, whether TJ is with us or not, when he’s sleeping or awake. This is why we need to find a cure for Type 1 Diabetes.
Diabetes can still beat you. This disease is so frustrating because no matter how good you are at taking care of it, it still throws curveballs that you can’t predict, you just have to be prepared to react.
We battle blood sugars to keep this boy alive 24/7/365. Most of the time we are able to keep his numbers between 80 and 200 but then Diabetes pulls random crap and forces us to re-strategize, change pump settings, and fight harder.
This has been one of those months.
His blood sugars would spike every night. I changed his basal rates in larger amounts than I have ever changed them before and still couldn’t get his numbers into range overnight. I even called the Endocrinologist for help adjusting his sensitivity (how much insulin the pump will give to bring down high blood sugar). The nurse I spoke to was surprised by how much I had changed his basal rates since our last appointment 3 months ago. But, after she consulted two other nurses, the changes they suggested were even more basal insulin at night and a much more aggressive sensitivity factor than was previously programmed in his pump (in other words: I made appropriate adjustments).
Two nights of the new settings and I’m ready to bump them up again. He’s still high all night. But we are not giving up!
What is causing this struggle? My guess is a growth spurt. It could be other hormones pumping through his veins at night or stress, or maybe because we have been less active this summer. It could be any number of factors. I’ve heard this is going to get even worse once puberty hits, and he’s getting really close to that 😳.
The good news is that, right now, he doesn’t realize the battles we engage in for him. He’s living life (granted with more to think about and deal with than most kids), having fun, and mostly sleeping through the night, while we fight this battle for him. When he’s an adult and living on his own, it will become his battle. But for now, we wake up in the middle of the night to fight, and mostly win, this battle for him.
While TJs A1c dropped every time we went to the Endo, the closed loop purpose was lost in translation.
We started Medtronic’s 670G system thinking that we would spend less time thinking about Diabetes/numbers and have more time to just live a normal life. Unfortunately Medtronic’s sensors are still so finicky/sensitive that this was not the case.
We had (maybe) 3 weeks of good sensors/numbers where we thought that this system could work for our family.
But since those 3 weeks were spread out over 6 months, it was definitely not working.
Most of the time we had to think MORE about numbers/diabetes than we were before the closed loop. We had to keep reminding TJ to check his sensor bg before poking (to make sure they were less than 30% off) where as with Dexcom, it wouldn’t matter.
Always having to ask him for his bg (because it only shows on his pump) was also frustrating for him and us.
This poor kid started yelling at his pump because it kept asking for a bg (even right after he entered a bg). The dreaded loop happened more often than not and really made it tough on our poor boy. He was the one that had to clear the repetitive aperts, because they alerted on his pump, not on a separate device. Although, at night, he still slept through every alert, even if we couldn’t hear them because he was sleeping on his pump.
This is how happy he was to switch back to Dexcom and to the new G6 system. While we haven’t seen 100% accuracy from this CGM, it has been close, and I don’t hear my son yelling at his pump/CGM about whether or not he should calibrate. And that feels like a win to me.
We had plenty of issues with the Medtronic 670G auto-mode, accuracy and the “enter a bg” loop were just a part of why we decided to switch back to Dexcom. The sensors rarely lasted a full 7 days and were more often than not inaccurate enough to frustrate the entire family. I know that it still brought our sons A1c down a little hit every 4 months, but it was still too frustrating to make it “worth it” for us. I know there are people out there who love this system, unfortunately, it wasn’t our experience. I look forward to trying the Tslim/Dexcom closed loop, when we are eligible for a new pump, until then, we will use the Dexcom CGM and Medtronic’s pump.
Tony’s cousin was married this month, which brought some if his family into town.
Their ring bearer was especially adorable!One member of his family we were especially excited about visiting was Tony’s mom! The boys Abuela (grandma, in Spanish) has been staying with us and we have been enjoining every minute!
The boys got to spend the night at my parents house while we went to the wedding, but other than that they have been with Abuela every possible moment!
we went to Chrystal Mountain and took the Gondola ride to the top with her, and more family that came for the wedding. It was the boys first visit with Uncle Tito, Aunt LouAnn, and cousin Cassandra!
We went to northwest trek and saw some animals with her, (and even more wedding guests)
We went to a local river where the boys had fun in the water and Abuela and I sat and watched before we all (except Tony-he had to work 😢) took a short walk on the nearby trail.
We visited Ruston Point, in Tacoma, and had lots of fun! We rented a surrey and rode it up and down the waterfront, had lunch on the water and enjoyed some ice cream cones.
We’ve had some restful days at home too, and Abuela has been teaching my boys how to play slots on her phone.We’ve played board games
Or watched movies together and gone for walks on our street.
Gabriel even learned how to make coffee for her!
Luckily we get to keep her with us for more fun adventures. We are loving having her with us (and trying to convince her to come again next year).
Just your average Thursday at the Ortiz home. Except there were no sub jobs today, so mommy stayed home. The boys got their school work done early and it stopped raining, so….. we went on a short hike.
We went to our local Foothills trail and headed east on the new section, the boys have been asking to take a muddy cutoff from the trail since we passed it our first time walking this section of trail. It’s about a half hour walk from the parking lot to the cut off but they were excited to go further once we left the paved trail.
It was VERY muddy and slippery in some areas, but it was beautiful. Lots of time walking near the river.
We saw some cool wildlife: goldfinch, sparrows, and snails! The boys stopped to watch skimmer bugs at the edge of the river for a bit too!
Part of the trail was treacherous and of course that was the boys favorite part. Walking along the wall from rock to rock, trying to stay out of the water isn’t my idea of fun, but it’s all they talked about after we made it past-how much fun it would be to do it again on the way back.
Both boys ended up with wet shoes and socks, apparently it’s fun to stand in the river until your shoes are full of cold water and then walk 2.75 miles back to the car.
I only tracked our return trip, because I didn’t have a full battery on the way out and didn’t want to be stranded with no cellphone in an emergency.
All together we hiked/walked almost 5.5 miles! And they didn’t whine very much on the return trip. G did a little, but quit pretty quick when I explained his ankles and toes hurt from the wet socks.
We missed daddy on this hike, but hope to take him out with us next time, and pack a lunch so we can go even further!
And we missed the rain! We were sprinkled on a bit but for the most part the sky was blue. Now the next storm has rolled in and TJs game tonight has just been rained out (I’m not sad about that) 😜 Maybe I can bribe the boys into getting our house cleaning chores done today by offering a movie when they are done…..
Poor G has terrible seasonal allergies. He’s on three different allergy meds to keep him from being miserable and sometimes, he’s still miserable even with all those meds. He had his annual allergy and asthma checkup today and the Dr once again brought up allergy shots. I’m leaning toward doing it, but Tony isn’t convinced. I’ve heard from the Dr and friends who have had them that it greatly reduces the reaction to the allergies or can eliminate them entirely. Which would mean fewer to no allergy meds for G-(which he takes every day!)
The down side is that he’d need to get another scratch test and then, once they mix the serum, shots starting at once or twice a week and working his way down to once a month for one to three years.
Tony really doesn’t want G to have to go through all those shots but I really don’t want him on adult allergy meds (even though the Dr said they are “safe meds”) for his entire childhood.
Looks like Tony and I have some more talking to do, but I’d love to hear what you think. Have you had allergy shots? Did they work?
I’ve been trying to teach my boys responsibilities for the last few years. I have assigned them chores and tried to get them to do their morning and evening routines independently and they’ve had increasing workloads of school work. But I’ve failed. While G has done ok with all of this (so far-he always has the lighter load) TJ has struggled. “Why do I have to do so much?” And “why doesn’t G have to?” Are questions he constantly asks. My reply of because you are older hasn’t been very motivating,
I was talking to my parents and they pointed out (again) that while he has more responsibilities, he doesn’t get any extra rights. They go to bed at the same time, eat the same foods, play the same games, and watch the same movies. So why would he want to take on these extra responsibilities? G doesn’t have to work as hard and he still gets to do everything that TJ does.
So here’s what I’ve done. I talked to TJ about what he thinks he’s earned by having more responsibilities and we made a list.
We talked about how he gets computer time (typing lessons and learning to code) and more LEGO time. He needs to get his school work done early enough to have time before going to Grandma and Papa’s house. He doesn’t get computer time or LEGO time there, those happen at home. So he decided that if he could get his work done by 9 he could have an hour before leaving home to do those things.
Then I talked to him about the other things he wants and we came to an agreement on them.
He can have a later bedtime , IF: he says prayers with his brother and then spends that extra half hour quietly (reading or playing legos). He later brought up that he also wants to watch more “big kid” movies and I agreed he could watch some of the super hero movies that are too scary for G BUT they would be in half hour increments during his half hour of being up later than G.
He also wanted a 5 minute break after every 10 minutes of school work. 😳 that would add so much time to his school day. I reminded him that I had already said he could take a break ANYTIME he needed one. BUT it was a jumping jack/push-ups/running break, not legos, toys or whatever break. He decided that 5 jumping jack or 5 laps around the room would be a good break.
Here’s how it went tonight (after our talk): the boys did their nighttime routine (alone for a change) and we said prayers and did bible history/bible reading.
Then it was time for G to go to bed and TJ to go downstairs for quiet time.
G was VERY unhappy (despite what this picture shows-I could get one of his pouting/crying) he really wanted to stay up with TJ.
TJ very wisely walked quietly from the room and headed downstairs where he built his legos and got to play with them for awhile.
I really hope and pray that this is going to help him act more grown up. I know he has had to be more mature (about somethings-thank you T1D 🙄) than most other kids his age but he’s very immature in other ways. Maybe a few more privileges will help him want to behave like a big kid instead of like his little brother.
I’m still looking for more ideas of privileges kids can get as they grow older to help him feel that more responsibility is a good thing. Having a later bedtime is not my favorite way to reward him, (especially when he complains of being tired all the time). How do you show your big kids that they are more responsible than their younger siblings and that it’s a good thing?
We were going to go to the zoo, on April 3rd, a Tuesday, during my spring break. After we took TJ to the Dr expecting to be told we were over worried (crazy parents), we were going to go to the zoo.
Six years later on Tuesday, April 3rd, during my spring break we went to the zoo. We almost didn’t make it. TJ was punched in the eye by his little brother on water morning (for getting in his face and repeatedly yelling “it’s Easter!”🙄) he seemed ok all day Easter, but the next morning woke up with a very swollen bloodshot eye, which he couldn’t open. We went to the Dr on Monday and she said pain meds and 24hrs time should heal it but if he wasn’t feeling better by the next day to call back for a referral to an ophthalmologist. I was a little worried this Tuesday would be another crazy medical issue day, but he woke up feeling better! So, we finally made it to the zoo! But first, we hiked.
After a quick calibration poke to get TJs cgm working (we just inserted a new sensor this morning).
We hiked Point Defiance again. We really have fun hiking around the point! We see different wildlife each visit, this trip we saw deer, a squirrel, a woodpecker, and a humming bird. We’ve seen an owl and a bald eagle on previous trips.
We love getting some exercise in the woods!
After a 4 mike hike, a picnic lunch, and a couple snacks, we headed to the zoo. It’s super convenient, since we park in the zoo parking lot to go hiking.
We saw some animals that haven’t been out much on our last few visits.
Like the clouded leopard! Finally! I think this is the first time we’ve seen them since they had cubs!
And the lemurs.
After our fun (and exhausting) day hiking and walking around seeing the animals, we stopped at a restaurant for dinner on our way home.
We stopped in Tacoma so we could eat on the waterfront. A beautiful view for dinner! TJ got one of his favorite dinners: mini corn dogs. He also got full sugar root beer, fruit salad, carrots, French fries and honey mustard, and a crazy big “dirt cup”. He dosed for 100 carbs for his dinner, not counting his special dessert. We expected a small pudding dessert and were shocked to see how big it was.
He sure enjoyed it!
It was a full, exhausting, fun day to celebrate one strong, brave boy! His life is far from perfect and he has many days where he hates T1D and doesn’t want to poke his finger. But he does it (eventually). We choose to celebrate this day because we are winning the battle. We have a strong son who is living and fighting to live every day. He goes through so much that other kids don’t, so an extra day of joy and festivity every year is definitely earned. He’s alive! And more than that, he’s thriving in spite (and because of) his new pump sites every 3 days, his new sensor insertion every 5-7 days, and his 5-15 finger pokes EVERY SINGLE DAY-whether he wants to or not.
Our sleepless nights, and all the drama that comes with this terrible disease is worth it because it keeps our little warrior alive.💜