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.