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……

Oh Be Careful Little Mouth What You Say

I am forcing myself to share this very very unflattering photo. It's my punishment for stupidity. You'll understand after.

I am forcing myself to share this very very unflattering photo. It’s my punishment for stupidity. You’ll understand after.

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?

No.

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.

DSC_0051

Sad, Happy, Screwed

So Middles received his first Humalog insulin pen yesterday. I must say I love Novalog but the Huma pen is Awesome looking.

He was beyond excited. Even Sweetstuff said she’d consider MDI again based on the Huma pen.

That is the part that makes me sad and happy at the same time.

It’s sad that my kids can get so excited about new diabetes tools. They shouldn’t have to be excited about them. I am grateful my kids all have such positive attitudes about diabetes management. Life would be so much harder for all of us if they despised it all and only saw what I sometimes see (a life sentence with diabetes, possible complications, added responsibility, the threat of death daily a different normal than others).

He was so excited to try it that he wanted to eat all the things just so he could inject.

His life with the Huma pen will be short-lived since his endo is already beginning the process to get him a pump. Thank goodness because have I said what a pain in the butt diabetes in school is here in CA?

He will be carrying his pen with him at school. He will have it in his backpack with his meter. The rotating nurse that is only at his school one day of week called me twice already (from another school) telling me he had to keep it in the office. I call bullshit.

I’m not having him be late for 1st period to drop it off, then late for the carpool after 8th period to pick it up and likely forget it frequently. He will carry it with him. (there are no lockers at his school, he carries his back pack with him everywhere regardless)

The nurse isn’t happy with me. She tried to insist. I basically said I would keep him home everyday unless she saw things my way. We will have a 504 review meeting early next week so its written in the 504. I have assured the nurse that he will not inject anywhere but the office (although honestly that’s silly since there is no one there to assist him regardless – I just don’t want him doing it in the bathroom and he isn’t comfortable doing it in front of other students).

Moving from a very very early diabetes diagnosis that only required a small dose of Lantus to the more difficult Honeymoon stage is well – total suckage.

His pancreas is still producing a good deal of insulin so dosing for highs and covering carbs can be tricky and treacherous. Last night he was 280 before bed. He was also very hungry. He ate a bowl of cereal and we dosed for the elevated blood sugar and the carbs. I checked his blood sugar two hours later while he slept.

67. Frick.

I’ve been spoiled. Sugarboy can down a 15 gram juice box in his sleep in less than a minute when he’s low. He doesn’t wake up. He feels the straw and smells the sweet nectar and simply drinks without ever opening his eyes.

Sweetstuff is a bit harder – I normally have to coax her awake just a bit and put the straw to her lips. She occasionally snaps at me “WHAAAT?” but mostly just sips the juice down, takes about 2 minutes.

Middles – holy difficult! I tried placing the straw on his lips while he was still sleeping, hoping that like Sugarboy he would simply drink it down. No go. He rolled over and rubbed his lips as if a loose pillow feather had landed on them.

I tapped his shoulder and said his name in a whisper. “Middles (I don’t actually call my kids by their blog names – that would be weird), middles honey you’re low, drink some juice”

Of course he moaned and rolled over. I try again, a bit heavier tapping and loader voice. “Middles you’re low drink the juice”

Fuck – now I have Shelby in my head “Drink the juice Shelby”

Still no response – well no helpful response from the boy. I place my hand behind him and pull him into a sitting position. He moans and says “ok”

Then falls back down.

Again I get him sitting. Again I put the straw to his lips. Again he says “ok” but remains sleeping sitting up.

5 more minutes of me trying to wake him enough to drink. When he does seem slightly conscious I tell him to drink the juice. He takes a tiny sip. Lays down and pulls his covers over him.

This is when I realize I’ve been spoiled and I am likely screwed.

Again I get him up. Again I put the straw to his lips. Drink Middles, Drink.

Another 5 minutes of slow painful sips.

He remembers nothing.

This morning he checks his meter and sees the 67. “Mom was I low, I saw a juice box on my night stand.”

Yes Middles you were low. It’s all good, I had your back.

Diabetes is stupid. My kids are awesome. I’m lucky.

 

 

Snorks and Demons Be Damned

It’s been awhile.

I’ve not posted.

That could mean a lot of things.

It could mean that nothing has gone wrong.

It could mean no one has required me to put on big girl panties.

It could mean that life is too busy being awesome for me to take the time to share.

It is all of these above and for that, I am thankful.

Of course we have experienced some bad pump sites (infusion sites where insulin pump infuses insulin into the body). It happens. We change sites, correct highs and move on.

We have also had some yucky low blood sugars – in all three kids. They drink juice, eat a fruit roll up and tell me they are STARVING for 15 minutes but again we move on.

Just another month with our unwanted house guest that refuses to leave, occasionally puts its feet on our coffee table (we don’t actually have a coffee table – technically its an ottoman but saying ‘puts its feet on our ottoman’ really doesn’t cause the visual cringe like a coffee table image does), it makes a ruckus at night, it messes with the kids homework like a poorly trained dog, and in general gets annoying.

That is until last night. My littlest, my Sugarboy was 268 at bedtime which meant no cookie. For those not overly familiar with type 1 diabetes – normally he can have a cookie and take insulin but when he is already high I turn into the soup nazi and its “no cookie for you” only I say it with a hug and an apology. We dosed insulin, read stories and kissed good night. He was tired and his head hurt from the high blood sugar and I was sad for my son.

I plugged into my phone, hit play and listened to Percy Jackson battle a number of monsters in a labyrinth while I tidied up the kitchen, folded laundry and moped a floor. An hour later I was relaxing on the couch with my new John Irving book. An hour after that I checked blood sugars.

Kid #1 – all good.

Kid #2 – right as rain.

Kid #3 – Sugarboy – not so much, lower than he was before bed but not by much. I figured it was a stubborn high, dosed more insulin and returned to my comfy couch. Too sleepy to read I caught up on Big Bang Theory (oh that silly Sheldon), Modern Family (glad I’m not the Cam of the family), and Two and a Half Men (mmm Ashton).

At this point it is after 1am and I am fighting exhaustion myself. I check the boy. He is now higher than he was before bed. Insert a number of expletives here also insert a new infusion site. Luckily my boy did not wake up when I put a new infusion site on his backside, despite the needle that shoots through the skin to leave the flexible canula behind. When he has high blood sugars he sleeps more soundly than normal. His body is just exhausted from the additional glucose coursing through him and very likely some ketones (ketones are toxins produced when the body burns fat and fatty acids for fuel because it doesn’t have enough glucose available – the irony is the glucose is there for people with diabetes but the body is lacking the magic key (insulin) needed to use the glucose). Dose insulin. Kiss his forehead. Kiss his little hand that hugs his pillow and say a little wish that all will be well.

I set my alarm for 3am. I don’t always do a 3am check but with a new infusion site, high blood sugars and a large dose of insulin to correct a high blood sugar I do need to recheck him.

Fast forward to 6:05am when my normal alarm goes off. Great song playing ‘Demons’ by Imagine Dragons. It’s kind of a dark song but has a catchy tune and I take the lyrics as a warning not to let my demons rule my days. Sorry – digressed.

Demons – In case you don’t know the song.

As the song played on I realized I didn’t hear my 3am alarm. This is the scene where I leap from bed and down the hall in less than a blink of an eye. Crash into the boys room and pause for a half second to watch his chest rise and fall. He is alive. I didn’t overdose him with insulin. (Just FYI – I am not the only parent who watches for the rise and fall of a child’s chest when the child has Type 1 diabetes – trust me on that.)

I check his blood sugar. Insert more expletives. His blood sugar 468. He wakes up, tells me his head hurts, tells me his chest hurts, tells me his stomach hurts. Then he goes potty – you know that scene in Austin Powers  – the Wiz – yea it was like that.

Don’t know the scene – click here >>> The Wiz

I tell him about the late night highs and the new infusion site. I tell him it likely failed.

He took the one I put in at 1am off – thankfully without much complaint. Sometimes those suckers stick on pretty good and removing them can be as uncomfortable as getting a new one.

The reason the new site and correction dose of insulin at 1am didn’t work.

photo

Friggen snorks. Shakes fist in air.

The infusion set I put in at 1am didn’t take. The canula (flexible tube that stays under his skin) bent and therefore was not infusing insulin into his body. We here in the diabetes world call that a snork. (remember the cartoon with odd sea creatures with the bent snork on their heads – google it if you don’t and don’t be fooled by their cuteness – they are pesky little a**holes).

Put on a new infusion set and dosed insulin. Checked ketones – LARGE. He ate toast and a yogurt (yes he was high but the only way to clear ketones is to eat carbs, dose insulin and drink lots and lots of water).

His blood sugar at 9am – 270. He was going down which meant the new infusion site was working. Still had a long way to go plus he still had moderate ketones.

He stayed home from school. It wouldn’t have been safe to send him to school with a severe high blood sugar, large ketones and a wallop of an insulin dose. Not to mention he felt miserable.

It’s eleven now. His sugars are down to 180. Ketones are small. He is still home playing xbox and relaxing. I’ll let him veg the rest of the day – he’s earned it.

Meanwhile I was writing this in an attempt to clear my head and keep the demons (anger, frustration, fear) at bay. I like it better when I don’t have much to say. Take time to hug a diabetic today.

PS. was not my intention to rhyme so much – clearly I’m feeling lyrical.

All Nighters – Not What They Used To Be

When I was a teen I my friend Rita would spend the night often and we would sit in my basement bedroom singing and dancing to music from Def Leopard, Madonna, Poison, Bon Jovi, and other hits of the 80’s. On one such night we each put cheap sunglasses as we sang along with “Sunglasses At Night”. We played board games and laughed nearly till dawn.

In college I would go out with friends on Thursdays for karaoke and sing songs from Grease, Cher, and a favorite called KawLiga about a wooden Indian (only we changed the line ” he don’t know what he missed” to “He never squeezed her tits”. We often partook in dollar shots of tequila which allowed me to believe I could play pool. It wasn’t uncommon for us to close the bar.

Once in the Air Force my hubby and I as well as some friends decided to drive from San Antonio to Lake Charles (5 hours away) just to play slots then drive home. There were 5 of us crammed into my hubby’s tiny hatchback. We left at 10pm, arrived around 3am, played slots for 40 minutes and drove back. It was crazy fun.

Another time while in the Air Force Chad and I, after an evening out playing pool and dancing, drove down to Corpus Christi from San Antonio (3 hours) just to watch the sunrise then drove home.

Last night I was up until 3am. Everyone else slept soundly. I watched multiple episodes of The West Wing stopping every couple of hours to check blood sugars for both of my kids with Type 1 diabetes. There was no laughter (ok I did giggle a couple of times because of West Wing antics) but mostly I sat curled up on my couch hoping that the next check would be within range and I could go to bed.

Not last nights shrapnel - this is from last week. Different night - same process.

Not last nights shrapnel – this is from last week. Different night – same process.

As a parent of kids with diabetes nights like last night are not uncommon. They don’t happen every week but sometimes they happen more than once a week. If the kids have high blood sugars and require large doses of insulin I can’t go to bed when they do. It isn’t safe. Either the insulin doses will bring their numbers down within a safe range in 2 hours or they won’t. I can’t assume anything. Diabetes doesn’t play fair.

Sometimes the insulin corrections drop the kids too fast. Other times the corrections don’t make a dent in the high numbers and the kids will require an infusion set change (place where the tubing from the insulin pump is attached to their bodies). An infusion set change means another dose of insulin and 2 more hours of waiting (check, dose, wait, repeat). If the kids dropped too low it means giving them fast acting carbs (normally a juice) while they sleep and another hour of waiting.

I can’t go to bed and set an alarm like I used to. I have alarm fatigue. Basically I don’t hear the alarms. I have slept through multiple alarms in the last year so now I am simply afraid to trust myself to get up to a middle of the night alarm.

It is the life of a parent(s) of children with diabetes. I know I’m not alone – I know this because I see my friends on Facebook and Twitter at midnight, 1am, 2am. I love not feeling alone but it breaks my heart so many of us can visit when we should all be sleeping and our kids should all be safe and diabetes shouldn’t be winning.