So last night. Wait I should start earlier. (quick warning – when I got to 1356 words I realized how long a post this would be. It is more than 1600 words. If you would like to skip the story and go straight to the moral feel free to scroll down – it’s an important lesson IMHO for all parents of kids with diabetes)
So yesterday afternoon I took Sugarboy up to Stanford to get started in a diabetes technology study. Since it’s a study I can’t/won’t share what he is wearing for the study or really any details. But I will say that his bedtime blood sugar needs to be under 260 for him to complete the study each night. The study is many nights long.
After the visit to Stanford he was starving. It was early, maybe 4pm. He wanted a personal pan pizza from Target (they sell Pizza Hut personal pan pizzas). While they are delicious they are also the antiChrist when it comes to diabetes management. Not only are they 80 grams of carbs but also loaded with thick gooey cheese and I’m certain they must use a good deal of butter/oil in the crust because multiple napkins are necessary. Of course he gets the pepperoni which adds an additional layer of fat.
A bit about carbs mixed with protein and fat. They (the carbs) are digested at a painfully slow rate. It takes a great deal of experience in the diabetes world to determine how best to dose insulin for meals that are what we call the triple threat (high carbs, high fat, high protein). Sometimes we are able to win the battle – extended doses of insulin over a 4-8 hour period after consumption usually does the trick. If you are a newbie to the diabetes world don’t fret about not figuring it out the first 27 dozen times – its something that takes time to figure out and every person with diabetes digests food differently – also not all pizza is created equal. Thick crust will take longer to digest than thin crispy. Veggie vs. Meat lovers – game changer.
Anyway – it was early enough in the day I thought all would be well. Eat at 4pm, do an extended bolus (insulin pump jargon for those taking multiple daily injections) and all should be well by bedtime in 5 hours.
I could not have been more wrong.
Bedtime blood sugar: 457 (see even those of us that have been dosing for pizza for over 7 years get it wrong and diabetes goes all wonky) (also note that we had neglected to check his blood sugar from 4pm to 9pm – not great after eating pizza)
I asked Sugarboy to dose for the elevated blood sugar (y’all do know that I don’t talk like that to my kids – that’s for y’alls benefit – what I actually say to my kids is “ok correct” but that wouldn’t make sense to some readers – then again most my readers are seasoned and would know so I could easily just type what I say and y’all would know but what if a newbie is here reading – imagine how “ok correct” would sound to them – holy crap I digress – also I might have used the word ‘y’all’ a few times and I’m not sure I took a breath while writing all this – can you say run-on)
Ok so Sugarboy dosed insulin to correct the high. He asked if he could sleep in my bed. With hubby away I love having him sleep in my bed. Also it makes for checking his blood sugar easier when he’s near me. (well it does but I still need to get up to check two other cwd so really thats a non-point)
He wanted me to go to bed with him. This is where mistake #1 was made.
I said I couldn’t because I would need to stay up and check his sugar in two hours so I could start the study computer.
His face dropped. He looked so sad. I thought because he wanted me to cuddle with him. I couldn’t cuddle – I would’ve fallen asleep – it wasn’t that I didn’t want to cuddle.
He then announced I could go to sleep. HE would stay up and check his sugar and start the study computer.
What? No. I tell him he needs to sleep and I have things to do so it’s all good.
It didn’t register right away. I mean it didn’t even register last night. It took till this morning to register what was happening. But Ill get to that in a second.
Two hours after he dosed insulin I checked his blood sugar. 431. #&@!
Ok so we likely didn’t screw up the dosing of the pizza. Clearly his infusion site (place where pump tubing attaches to body to deliver insulin) went bad. It was only at the tail end of day 2. The sites are normally good for 3 full days even longer sometimes if we forget to change it out.
Participating in the study last night was off the table. No big deal. Only it is since we are kinda on a time crunch since the study takes 3 months and we are moving at the end of 3 months. Each night we miss leaves us less of a window to finish the study.
Again no longer concerned about the study I focused on changing his infusion site. Sometimes I can get this done without waking him. Sadly we are out of the quickset infusion sets that are easiest to place IMHO. I had to use a different type of infusion site that I am not entirely familiar with.
I fumble around with placing the sensor in the applicator device for a good 7 minutes. I cock the device, remove the little plastic piece that protects the needle (or my fingers which ever), place it on his skin and press the release buttons that plunge the needle and flexible cannula into his skin. He woke up. He screamed in pain. He tried to grab at the applicator which I had not yet removed from his skin. I patted his hand and apologized. He went back to sleep. I gently lifted the applicator. @&#@
I had not removed the tiny pieces of paper that cover the adhesive parts of the infusion set. Thus the site came up with the applicator. I just punctured my kids skin for nothing. And worse, I’ll need to do it again.
Back downstairs. Another infusion set. Less time to place it in the application device this time around. Back up stairs. cock, remove paper, remove needle cover , place on skin, press, pull – Success – he did stir again but no scream this time. (I should note to any newbies or veterans considering a pump – very very rarely do my kids complain about pain when inserting a new infusion site. They agree it isn’t really painful and if it is, it only lasts a micro second. Now being lanced with a needle while in the middle of REM – well who the heck wouldn’t occasionally scream).
I fill the pump tubing with insulin then attach to his body. I dose him with insulin to correct the high. Keep in mind he has now likely been really really high (400+) for 7 hours. The correction is a very large amount of insulin. If he had received any of the previously dosed insulin I could be putting him in danger. Thus I set an alarm to wake up in 2 hours.
At 1am my alarm goes off and I check his blood sugar. 301. I give him another correction. sometimes the longer a pwd is high the more difficult it is to correct. I don’t know the science behind it – I just knows it happens.
I set another alarm. 3am – 238. There is still a good deal of insulin working in his body so I do not do another correction.
This morning he is a very pretty 113. Of course he feels like crapola.
Meanwhile my other dear son is babbling (in his sweetest little voice) about a scooter he wants for Christmas. By this time I have heard about the scooter a dozen times in less than 24 hours. I’m fairly exhausted from the previous nights wompus with diabetes and I tell him so. I did this without thinking. I didn’t do it in an angry voice. I was sure to say “I’m sorry Middles I just can’t focus on the scooter right now because blah blah blah Im exhausted I didn’t get much rest can we talk later?” Middles understood and all was well, right?
Sugarboy heard it all. He sat with his toast hanging limp in his hand half way to his mouth with a tear rolling down his cheek. He looked crushed.
He wiped his little tear, put down his toast and announced that he will stay up next time so I can go to bed.
Did you hear my heart break? I’m fairly certain it shattered on the floor.
I told him it wasn’t his fault. I told him diabetes is stupid. I told him I had things to do anyway. I told him I would nap later. I told him its not a big deal. I even lied and whispered to him that I was exaggerating because I didn’t want to hear more about a scooter. I told him anything I could think of to take the sadness and guilt off him.
So the moral – some unsolicited advice for other Dmoms and Ddads out there – be careful what you say in front of your little ones in regards to the hard times WE have helping manage diabetes. As much as we hurt for them they hurt for us. They see all we do, all we give up, how tired WE are and it makes them sad and makes them feel guilty. They have enough to worry about. We do this for them but they shouldn’t have to hear about it. They already know and if they don’t recognize it now they will when they grow and leave and have to spend a lifetime doing it for themselves. Just my two cents.
I love this kid.
14 thoughts on “Oh Be Careful Little Mouth What You Say”
Christina, I LOVE reading your blog. I discovered your blog and many others earlier this fall. Previously I managed my middle son’s T1 in a cave for seven years (ok, not exactly). My life has been enriched! Thanks for sharing your remarkable story. I cried reading about Middles dx. You’re a terrific writer, so funny and truly caring. I wish you the best of luck with your upcoming move and hope you’ve had lots of warm, friendly welcomes from the DOC there.
As for the moral of your story, it’s a good wake up call. My 13 y.o. son has overheard a lot about missed sleep. We would never EVER want him to feel guilty! We (hubby & I) need to rethink this and I need to see how my cwd is processing these comments. So again, thank you for sharing!
Thanks Karen and I’m glad you found my blog and many others. It really does make things better reading others stories. I used to think there wasn’t anything else I could learn then I found the DOC and realized how much I didn’t know.
Thank you for the well wishes in WA. It will be what I make it and I have a tendency to always make shit work.
As far as speaking without thinking of our audience. It happens to all of us. We do it in many regards of our lives, I just thought I would share yesterday because it hurt so much. Its good you plan to check in with your son. I think that is wonderful that you will empower him to let you know how he feels about it.
I did the same thing in front of Elise the other day. Not about sleep, but about something else. A shattered heart describes it perfectly. I have a very good track record of speaking first and thinking later, but with stuff like this, I need to get a handle on it.
Or develop some sort of filter. Thanks for the reminder on why it is so important.
we all do it. Ive done it a bazillion times. Im embarrassed to admit that one day with my daughter I said “I break my back taking care of you and you just don’t care” – this was in reaction to her lack of checking blood sugars before walking home from school. She was annoyed at my nagging and was complaining that I ask too much of her.
Yea wish I hadn’t said what I said.
Hmmm…thanks. I probably say stuff like that more than I realize. It’s kind of a deal we have though…she takes care of diabetes at school and some when I ask her to at home like if I’m busy cooking or something and it would be easier for her to. Then she knows I’ve got it at night. I’d do it all for her always if I thought that would be good for her and I did for quite a while before I realized I was doing her a disservice. But she asks a lot , “are you tired, Mama?” and it’s become a joke where my response is a random question to her that has an obvious “yes, always” answer. I should tell her I’m not tired. Thanks:)
LOL – I have said “always” too. Sadly it isn’t the same as when Snape says it to Dumbledore.
Broke my heart too! Such a sweet boy! We never think about how much they absorb of what we say. I will definitely try to complain less in front of my little T1! Thanks for sharing!
I have to remind myself often that my kids hear everything and learn more from how I live my life than how I tell them to live theirs.
You have the sweetest (no pun intended) son ever. But I suppose I can see where he’s coming from. Not that I recall feeling bad about what my parents went through when I was young, but I hate it (as an adult) when my diabetes inconveniences or burdens someone else.
And since we’re exchanging unsolicited advice, a “rescue bolus” (as I call it) by syringe always seems to work better than via infusion site — and a brand new one at that. It seems to work faster (especially if you manage to hit muscle, which I try to do when needed) and also saves the time of replacing the site. Trust me on this — I did this at 4am yesterday morning, after the purple ketone stick convinced me it wasn’t the fault of the crappy meal I had for dinner the night before.
Oh, and putting in a CGM death-sensor (AKA Sofsensor) and realizing that you didn’t remove the adhesive covering first messes with both mind and body. I still find trouble forgiving myself for the time(s) I let that happen. Trust me when I say you’re not the only one.
Hey Scott – my boy is one of the most empathetic people I know. He always has been. He just feels things deeper than most. He considers the feelings and comfort of others well before his own (not including his siblings – there seems to be an empathy wall between them – no empathy allowed only jealousy and frustration).
I often do the rescue bolus via syringe but alas I was just exhausted and didn’t want to search for the syringes.
I had a type in the post – it wasn’t a CGM sensor I was replacing (that would not be a middle of the night must) – it was just the infusion set.
And honestly my kids don’t even flinch at the CGM placement. Sweetstuff just finished a 4 month study with one and had no issues with it. Sugarboy just started the same study and has no issues. They also both did a Dex G4 study about a year ago and they really liked the application of that sensor (more so than current study sensor).
I don’t know if they are just used to getting lanced and thus it aint no big deal or if the new application processes for current CGMs have just improved greatly.
I wish we had CGMs all the time. Perhaps one day we will be able to get them for all the kids rather than 1 at a time via studies.
Christina, thank you for sharing this! When I was younger, I felt terrible for all the nights my mom stayed up to make sure I was safe. As I got older, I started being extremely secretive about my blood sugars and I made it clear that I wanted to do it on my own. BUT it was nothing personal against my mom. I wanted her to get rest and stop worrying about me. My point is, you’re doing a great job and your kids will always remember that. We know how much d mamas do for us. And when your little ones do leave and start doing it all on their own, they’ll know its possible because you did it when they couldn’t help themselves!! But like you said, that;s just my two cents!! 🙂
Thanks Bittany. Sorry it has taken me so long to respond. Your words mean a lot. I still don’t like my kids to hear me whine or see me tired. I don’t want them to worry about me but I also don’t want them to dread their own future.
Im sure you already do but in case its been a while – hug your mom/dad and tell them thanks. Im sure it will be so very appreciated.
Thanks for reading and commenting.
oh noooooo. my heart dropped when you described his toast face. 😦 this is a good reminder. also things like this may have contributed to me inadvertently taking a blog hiatus since she started reading my blog. yknow? i plan on getting back to it though, maybe with a slightly different approach.
It was a tough lesson a very painful lesson that our kids see and hear everything. I also hear ya on the kids reading the blog thing. If there is anything that I think might embarrass them I don’t share it and if it is something that is questionable I ask their permission. Even with using fake names I worry about how they would feel if one of their friends happened on my blog and read something that my kids would prefer I not have shared. def food for thought