I Get It Wrong Often

Last night my Middles, (13 year old teen boy) was over 400 before going to bed.

He was 238 before dinner and bolused (used his insulin pump to deliver insulin into his body) for dinner with extra insulin to correct the high.

That was 4 hours before he was going to bed.

He was surprised by the high blood sugar before going to bed.

The infusion site he had on was only 36 hours old.

I chose not to drill him regarding what he might have eaten after dinner that could have resulted in the high but I did assume he had eaten something or somethings.

I just told him to correct (bolus insulin for the high) and to go to bed.

I set alarms (two) on my phone to wake up and check his blood sugar around midnight.

I don’t remember hearing the first alarm.

I do remember hearing the second alarm and I remember silencing it.

I awoke with a start at 4:11am realizing my neglectfulness.

In the moments walking between my bedroom and my sons bedroom my heart pounded against my ribs. The fear parents of children with diabetes experience when we know there is the slightest possibility our kids could have experienced a sever low at night can be monstrous. The relief when we see our child sleeping peacefully while their chest slowly rises and falls with each breath is equally as immense.

My boy was sleeping soundly and breathing normally. Exhale.

I checked his blood sugar.

403.

Fuck.

My assumption that he had eaten some rogue food between dinner and bed was incorrect. Instead the high before he went to bed was very likely due to a failed infusion site (place that insulin from his pump is infused into his body). The site needs to be replaced a minimum of every 3 days – his most recent site was only 36 hours old and shouldn’t have failed.

I had to wake the child and ask him to come downstairs to replace the site and insulin in his pump.

He didn’t complain. He felt like crud and he knew that insulin was the only way he would feel better.

Ok he whined a little. It was 4:15am and he didn’t sleep as soundly as I had first imagined.

New site, new insulin in his pump and a large bolus to correct his blood sugar.

We don’t own a ketone meter (a small device similar to a glucometer that checks the amount of ketones are in the blood via a finger stick/drop of blood), ketones are often present during periods of extreme high blood sugars. Ketones are produced when the body burns fat for energy, excessive ketones poison the body and when combined with dehydration can result in ketoacidosis, a life threatening condition.

Before he came into the kitchen to get his new site and insulin I heard him in the bathroom. It was too late to ask him to use the ketostix (paper strips with a small patch on the end that is chemically treated to change color if ketones are present). The ketostix are not a very accurate way to test for ketones – because the paper sticks check the urine for ketones the result is about 4 hours delayed, meaning not the most accurate ketone level, but at least it is an indication of what was happening in this body. Alas – he used up all his urine so no ketone check.

Sent the boy back to bed.

He will need to go to school regardless today. I am scheduled to work.

In the hour since I awoke with a panic I have been berating myself for yet another fail.

We own Dexcom CGMs (continuous glucose monitors). CGMs check a person’s blood sugar every 5 minutes and have alarms that can alert the wearer and others that blood sugars are high or low. Had he been wearing his CGM we likely wouldn’t have ever got to be in the 400s last night and certainly wouldn’t have stayed in the 400s all night as I slept through phone alarms.

Had I done the nagging parent thing at bedtime to determine if he had actually eaten between dinner and bed I might have been able to determine that the high was in fact due to a failed infusion site rather than by a teen that likes to snack and forgets to bolus.

Had I just stayed up between 10pm and midnight I would have not been sleeping at midnight and I would have been able to replace the failed infusion site 5 hours ago vs. letting my son sleep with such dangerous numbers.

Like I said, I get it wrong often.

I’m sorry middles.

Ps. In the 40 minutes since I wrote this and went to take a shower for work I spoke with my husband. He confirmed that he observed Middles eating multiple tangerines before checking his bedtime blood sugar. Thus, it is likely he was high before eating the tangerines but also likely he forgot to bolus for the tangerines. Suggesting that while he bolused for the high before bed he neglected to take insulin to cover the tangerines.

Sigh……

WTH

WTH – my most frequently asked question.

I’m still new at this blog thing – wish I could say I will be as diligent as my favorite bloggers and blog everyday but alas I am a mom of 3, wife, substitute teacher and not very organized regarding any of the above mentioned roles. I started this post yesterday morning and saved it when duty (also called laundry called) – the evening discussed was not last night but the night prior.

At 8pm (bedtime for my two elementary aged kiddos) we checked my dear son’s BG. He was 242 – huh? When attempting to correct his BG with insulin it was discovered that he had not reattached his pump after his shower an hour prior. My dear husband asks him to retrieve his pump from the bathroom upstairs prior to having a cup of milk before bed and all of a sudden everything hurts. His hair huts, his head hurts, his legs hurt, etc. No mention of these alignments while watching TV before bedtime was announced but now it seems his entire little body is on strike. He (ds) decides to skip the milk and requests to be carried up stairs. I holler up a reminder to my husband to attach pump and provide a correction (insulin dose). I go up a few minutes later to check that they brushed teeth (my question – “did you brush your teeth?” Nearly always is an answer in the negative at which time I make my boys get out of their beds and brush their teeth – at least those that they want to keep.) and tuck them in for the second time really since I nearly always give hugs and kisses prior to asking the teeth question. Thus a second round of hugs and kisses is needed – likely their plan.

My ds with D talked his way into my bed because his legs and head hurt. My husband and I were not going to bed but we let him lay down in our bed. At 10pm I came up to go to bed. Checked my dear daughters BG and she was right as rain (YES!), then on to my dear son. When I came into the room I could hear him grinding his teeth. That isn’t a good sign – he always grinds when he is high at night. He was 432. Thus the WTH?? He should have been in the 100s. Check the history on his pump – no correction – oops daddy forgot. But why 452? Why not just still be in the 200s? I will likely never fully understand where some numbers come from. I get the sky high numbers that come from a missed bolus – yes we have missed doses of insulin, I get the high numbers that come with sick days – dang illnesses. I get the high numbers that come from infusion sites gone bad – lack of organization leads to sites left on for more than the recommended 3 days. I get high numbers due to the beginning stages of puberty in my dd – Lord help me when we are in the thick of puberty. I get the high numbers caused by eating high fat/high carb meals like pizza – although we are getting better at combo bolusing. What I don’t get are the numbers that seem to have no rhyme or reason.

Thus, alarm was set for midnight. Midnight check resulted in in 231 so my ds was going down but n additional correction was needed. Alarm set for 2am. 2am check came up with 107. Checked dd at the same time and she was within range so I canceled the regularly scheduled 3am check and took pleasure in the following 4 hours of uninterrupted sleep.
I know not all parents of cwd get up every night, and not all diabetics themselves get up to check every night. I know many parents and and patients use CGMs (continuous glucose monitors) that alert them to rogue blood sugars. I pass no judgement on any of the decisions regarding night checking. I don’t always check at night. Although the nights that I don’t have at least one if not multiple alarms set are few and far between. Sometimes the moon and stars are aligned so perfectly that I allow myself longer uninterrupted sleep. On those nights I don’t go to bed till midnight, both kids must have numbers within range, no IOB (insulin on board) and it must have been a fairly average day with no super long periods or sitting or overly strenuous activity. You can imagine how often all the stars and the moon align in this fashion for not just one Type1 but two. Why do I set alarms and get up so often – because I feel better about them and their diabetes knowing they are safe. Knowing that if a blood sugar is high 200+ I can correct it and help keep their A1Cs (yes I know not a perfect indication of diabetes care – but a good indication of future possible complications if regularly too high) more in check. I recently spoke with a parent whose son is nearly an adult. He was diagnosed as an early teen. Her doctor told her that night time checks were only necessary the first couple weeks post diagnosis. Her son’s A1C varies between upper 7’s and low 10s. What a wild roller coaster. Yes puberty is playing a large role in the crazy numbers but still – I hope my kids will not be so wacky.
One day I hope to get a CGM on both of my kiddos. Right now the fight is ugly. Neither of them want to wear or carry an additional device. They already wear their pumps and take their diabetes packs (meter, poker, strips, juice, extra batteries, extra lancets, and fruit roll ups) every where they go. My dd who is now 12 frequently complains about the profile of her pump (although I believe Animas has the lowest profile). She wants her skinny t’s and her skinny jeans to be seamless – not possible with a pump attached thus wearing the Dexcom (which we purchased and has collected dust for 2 years) is not a happy thought for her.
Well this has been a babbling mess. Thanks for baring with me as I learn how to blog effectively.