Daily Highs or Nightly Lows

While we continue to wait for our son to be approved for an insulin pump (yes waiting and waiting), we are continually trying to manage the ever changing demands of his T1D.  Of course we have the honeymoon period of diabetes that was giving us the sense that things were in pretty good control then we got the CGM and realized that things were in control every 3 hours but in between they were fluctuating wildly.  Now we seem to be going through a period where our current ratios and corrections aren't working and things need to change.

Since we have the Dexcom, we get to look at his patterns over days and weeks.  As someone with a background in managing data and making adjustments to affect change this was right in my wheelhouse.  Unfortunately, waiting 14 days between changes has not really been my forte.  Our medical team really likes to see a pattern that lasts over 10 days before making an adjustment to his basal insulin or even his daily ratios.  I feel like we should be making adjustments a little more frequently than that.  So, we fall somewhere in between. 

We've been increasing N's basal (long acting) insulin over the past two weeks.  He has a pattern of daytime high blood sugars.  His BG starts rising from the moment his feet hit the floor in the morning until his breakfast insulin kicks in.  Then three hours later, when the insulin should be about done and the food should be about gone, his BG starts rising again.  It also rises whenever he is exercising.  It rises and rises.  For several months we would go days without having to give a correction, just covered carbs at meals and we were good.  For the last month we've had to give correction every 3 hours all day long and at least once in the middle of the night!  So up we go with the basal insulin.  Each time it is adjusted the other ratios end up needing adjusting too.  So this process takes several weeks to get a new balance.

Well our new balance is one of the following: we can have basal at level X and he has daytime highs or we can have basal and level Y and we get nighttime lows.  Apparently we can't be in range for both day & night.  I know when we get on insulin pump therapy we can set different basal rates for different time periods so I'm looking forward to that but for now I'm stuck with high blood sugar during the day but a nice steady line through the night or in-range blood sugar during the day with a falling line and a need for a snack in the wee hours of the morning.  I'm opting for the 2 a.m. snack right now since I know the long term effects of high blood sugar and because our son does have a CGM that wakes me when the BG gets below the level I set for it.  The weirdest thing is that it doesn't take much in the night to correct the problem.  He BG falls slowly over several hours until it dips out of range.  I give 4-8 grams of carbs and he bumps back up to 150 then starts falling slowly again until he wakes in the morning.  Thankfully we have the dexcom to wake me up and he is able to crunch up a glucose tab without much memory of being awakened at all.  

I'm tired though!  I'm no spring chicken and waking in the middle of the night is hard on me.  I remember when my kids were under 5 and there was so much nighttime waking going on...how did I do that and still work?  I guess age is a factor.  TIRED.

Highs & Lows can appear out of nowhere!

I feel like we've come a long way with our understanding of type 1 diabetes in six months.  Who knew we'd have to get so knowledgeable but here we are.  The thing no one can help with though is that you can do everything right, everything you've been taught, and yet...

Highs &  Lows can appear out of nowhere!

They come out of nowhere sometimes and there seems to be no rhyme or reason.  I know there probably is something: growth spurt? low-level asymptomatic illness? change in the weather? poor sleep the previous night? hormones/puberty? full moon?

N my 11-year-old with T1D has been amazing for the past six months.  He is handling it all with good humor and some resignation.  I know he isn't "sneaking" food or forgetting to bolus because there isn't a need for him to sneak and we make sure there are always two brains working out a bolus.  We are trying to teach him good habits to take care of his chronic health condition because someday he'll be out on his own and we won't be right there anymore.  

N likes cereal for breakfast.  I know, I know, there are better options but we've been assured (repeatedly) that he can and should eat what he wants and cover the carbs.  What I mean by better options is that there are carbs that have less effect on the range of blood sugar, the spike and fall.  High fiber, lower carb meals work better for that post-meal spike and several hours of blood sugar stability and we know this but we also know he is 11 and he likes cereal and he can have it.  He doesn't eat fruity choco marshmallow whatever, he eats a whole grain cereal but it is still cereal.  He gets his bolus and we wait 25 minutes to give his breakfast of 30 grams of carbs and a protein.  About an hour later his blood sugar goes up out of range but it usually comes back down within an hour.  This has been his norm for the three months we've been "distance learning" by staying home.  Same meal every morning.  The boy likes his routines!  

We've tried adjusting the time between the bolus and the meal and 25 minutes is about it.  If we wait too long he has a low followed by a spike and if we give food too early the spike stays elevated longer and the peak is higher so 25 minutes.  Until two weeks ago.  Two weeks ago the spike was 100 BG higher than previously!  It also spiked up and stayed up for 3 hours.  It came back into range about twenty minutes before his next meal & bolus would occur.  

The other thing we noticed, about the same time, is that his lunch bolus isn't working quite as well and there is a weird drop and raise between lunch and dinner.  He gets lunch at about noon and we can only give insulin every three hours due to insulin on board and not being on a pump or calculator that can help us.  To avoid "stacking insulin" we've been told to wait 3 hours before correcting with insulin or bolusing & eating.  So he eats at noon, has a smaller spike that is on the high side of in-range for him at 170-180, sometimes out of range but lasting less than thirty minutes above range.  Then at about two hours & forty minutes his blood sugar falls to the lower end of his range to around 100.  He doesn't usually want an afternoon snack; probably because he isn't going to school and working up an appetite.  He could have insulin at 3 but he often doesn't want a snack and he is in-range so none is needed.  Then he spends the next hour with a steady glucose rise until he is out of range and he stays that way until dinner at 6.  I know, I know, I could give a correction but then I feel like I have to push dinner back or worry that I'm stacking insulin.  Ugh!

We have our math, ratios, corrections, factors, etc.  We do the math as we've been taught and most of the time it works out.  But for two weeks now we've had this nonsense that makes me wonder what I'm missing.  Thankfully we can send in our numbers to the medical team at the Children's Hospital and get a professional opinion but I sent in numbers this morning by 9:30 and haven't heard anything back from them.  Since it is Friday, I assume I won't hear anything until Monday.  

So we'll keep doing what we do.  We may swap out some preferred foods for less preferred ones for a few days to try to get things back into a more preferred pattern.  Our CGM lets us look at our graphs and helps us check for patterns.  It also makes suggestions for ways to adjust when a pattern emerges and we've used this to change our long-acting insulin dose over the past week but it hasn't changed the daytime pattern and we are starting to see midnight lows again so we are holding.  

Type 1 Diabetes is just an uncooperative toddler that follows rules when it feels like it and shakes them all up when it doesn't.   Here's hoping we aren't heading into a pattern of return to the 3 am club.  Right now his glucose is in range less than 80% of the day even with corrections every three hours, and at night he is dipping below range between 11:30-12.  

I guess this is why I drink so much coffee, or wine...

In the nick of time

So our insurance has a specific company we can order our Dexcom CGM supplies from.  Even though these supplies are available at local pharmacies, I have to order them from a healthcare supply company but I can get, according to insurance, 3-months of supplies at once.  

Sounds good right?

Hmmm.  One Dexcom sensor lasts 10 days so for 3 months I get 9 sensors.  90 days of supplies for three months but some months have 31 days in them.  I cannot order new supplies until 12 weeks after my previous order.  I tried to order earlier online but the shipping date was for exactly 12 weeks from the last order.  I called the company this week just to make sure there were no other options and was told it was out of their hands, nothing they could do.  It isn't a large problem but it is an additional stress and we have plenty of stress, full up of stress, no thanks I don't need anymore stress.

So on the day they will send our next shipment we will have 7 days left of our current supply and they say it takes 4-5 days once they are shipped.  So if everything works out we will get the new sensors the day before we need one. 

I asked, not really expecting a satisfying answer, what happens if this sensor fails, or the adhesive wears off and it gets too loose, or the shipment is delayed?  The answer I got was "just give us a call and we'll make sure to ship you a sensor."  Um, you are already shipping sensors and they may not arrive in time but your solution is to ship me one?  I'm tired already of this and I've only been doing it for a week shy of 6 months. 

I'm a member of a type-1-diabetes facebook group in my general region (within 4 hours of my location) so I asked them about it.  I got several "groups" of answers.  

1. You just have to deal with it, work within the system, you can always go back to poking his finger 5-8 times a day and waking up in the middle of the night to check blood glucose levels for the few days while you wait for your shipment to arrive.  It only happens like this every three months. 

2. Pay for a box of sensors out of your own pocket so you have a little leeway. A box of sensors without insurance is over $350 from what I could find but sometimes costco has them on sale in their pharmacy for less a few people told me.

3. Just don't use a sensor for 5-10 days this time around but order on time and you'll be ahead for a while but, just so you know, you will eventually use that time up depending on how many days are in the month and where the weekend falls on your shipping date so you'll have to do this at least once a year.

4. Switch insurance companies.

I appreciate this group, I really do but these are four variations of bend over. That sucks. 

This group is full of amazing people though.  They never post negatively towards others in their shoes.  They never say "you are not entitled to your feelings on this" but they also don't let you wallow in self pity.  They try to lift you up and cheer you on and remind you that you've got this because you are the only one who can do it.  

Many members of this group, who I've never met, reached out in private messages to me.  They offered to loan me a sensor of theirs and trusted me to replace it when my shipment arrived.  They offered to deliver it to my house in the middle of the night if I needed; some of these people were over a two hour drive away. They've been where I stand and they know how it feels to tell your child that we are back on finger pokes for no reason other than that we can't have a sensor a few days before we will need it because insurance thinks we can't be trusted with it.  I guess they are worried we may overdose.  

I'm thankful we have the options we do but frustrated with the hoop jumping.  I will likely look into a new insurance option next fall when our open enrollment comes around and if we switch it will start in January so at least another six months.  It will likely just be a new set of issues though that I will have to learn to navigate.  When to call, who to ask for, how to get things done.  I am super fortunate that I have access to the types of health supplies I do have access to for my son but disillusioned a bit by the process.

So I'll just keep up the fight and know that others are out there making the same phone calls and feeling the same disappointments; connecting themselves with some people online and being thankful that other's hearts and trust is so much greater than could be imagined. It does feel strange to me how one thing can leave me so full of hope and grumpy sorrow at the same time.

They Mean Well

People, especially "friend"  people, have the best intentions.  They want to support and to help.  They want to listen and empathize.  They want to make sure that you are heard and held when you need to be.  But, they don't really understand just as I don't really understand their struggles.  We do our best for those we love but truthfully you must be walking the same path to understand.  It's important to get a friend or two who walks the same or similar path to yours for sharing the highs with but also for when you are weak and tired and overwhelmed and struggling and you just don't know how much more you can do, take, handle.

I'm tired this week.  My job is emotionally demanding.  The students I work with have significant needs and multiple disabilities.  To provide them with a free and appropriate education I work with and manage five staff members directly (my team) and coordinate programs with six general education teachers and four specialists.  I have to put my teaching on luke-warm some days.  I'm not sleeping much.  I'm worn down from the lack of sleep and the fact that I'm no spring chicken.  I've let my team know that I appreciate their grace right now and acceptance that some days I am doing just enough at work but not nearly as much as is typical for me.  They are carrying the weight and I'm just steering the ship some days. 

The wonderful friends in my life ask how I am and I tell them "just tired" or "a little worn out".  I never want to burden others.  I can handle things.  When I tell them about it they don't really get it anyway.  They think to themselves waking up at 3 a.m. would be hard but they don't feel how it feels to do this night after night.  I don't want to be the person who can only talk about the chronic health needs of my family.  I want to ask them about their families and how their weekend was but I can't hardly listen to their answers because some days my mind is so fuzzy.  This too shall pass.  I know a year from now I will barely remember the struggles of now.  I will be with all new struggles and these ones will have faded away. 

People who aren't close with me, "work friends", or casual friends, they mean well.  They ask how you are and they wouldn't object to you telling them you aren't holding it all together but they are equally happy to accept the "I'm fine" even when you say it through clenched teeth or with eyes too bright as you fight not to cry.  When you don't remind them, they forget that you are doing this T1D thing every day, every hour, every minute.  They don't realize that you now have a set of responsibilities that manifests at a rate similar to caring for a newborn.  They tell you about their hiking trip and ask if you did anything fun this weekend.

  Hmmm well I checked blood sugar and managed to pull my son back from some shockingly low numbers into a range that is safe for him.  I stood outside his bedroom and watched to make sure he was just sleeping and not struggling to survive only to read on his monitor that his blood sugar was too low to sustain life much longer.  I watched episodes of cartoons at 1 a.m. with him as he ate gummy bears and drank juice boxes because the episodes are fifteen minutes long and would cue us both when we could check that glucose level again and see if we'd finally made it back into range and were safe to fall back to sleep.  Um ...

"My weekend was great, thanks for asking".

I'm fortunate that my team at work has been through this before.  Our co-worker's daughter was diagnosed almost two years ago and I was the one trying to fathom her exhaustion and frustration.  Her difficulty with insurance companies and the number of appointments she had to add to her months and year.  I was there when she would arrive at work with tears in her eyes or when her phone would ring and she would see it was her daughter's school calling.  I was there when she'd grab her keys and say "i'm sorry" as I would respond "take care of your family, we've got this".  But I couldn't really help and I didn't really understand.  I'm the fortunate one.  I have her and she does understand and she's been there before.  She can probably listen to me talk about health incessantly forever.   When I tell her about a crazy high or an unexpected low, she has stories to tell back and we can be together.  When I get a text message from the medical supply company that they have received our information for a glucose monitor she understands why I'm crying.  I have her and all our other team members who supported her and we're just all doing it again, same dance new partner.  I'm fortunate in this.  But sometimes it doesn't even matter.  You can only push yourself so much and some days you want to throw the blanket over your head and sleep but you only get 3 hours at a time. 

Find yourself a person or people who have walked the similar path.  They can carry you for a short distance once in a while.  Just far enough that you don't break or quit; you can't even if you want to so find some support.  They all mean well but find someone who understands.  And buy them coffee once in a while to show your appreciation😏

Wonky Numbers

Sometimes you just get a WONKY NUMBER. 

You do everything the way you are supposed to.  You give a typical day of meals, all standard fair, you cover carbs and make sure your T1D son is getting enough fluids.  Things have gone according to plan all day with numbers right in range.  Then you do the bedtime check and WONKY NUMBER.  These always seem to show up at bedtime or right before you need to leave the house.  They are never the first number of a weekend morning where you had no plans except lazing about in pajamas.  Nope.  WONKY NUMBERS are for making you lose sleep or change/cancel plans.

So things have gone fine today.  He woke up right on target.  He ate the same breakfast and lunch that he has had 100 times before.  It was not a PE day at school.  All his checks were right on target.  No corrections given all day.  So at bedtime we do the check expecting to be in range but NOPE we are at 220.  Hmmm wash your hands and test again just to be sure but yep out of range.

Now I don't want to make a big deal out of it but we have been very lucky to be in range for the past several weeks.  Things have been going along as expected and our team even gave us the green light to stop the 3 a.m. glucose check.  (this is a whole different kind of problem for a later post)

How am I supposed to sleep now?  WONKY NUMBER!!!  

What if it was a fluke and I've just corrected him so that his blood glucose plunges to an unsafe low while he sleeps?  Of course, this isn't a very likely scenario.  The likely scenario is that the insulin from his dinner shot didn't absorb well or the apple he ate was more "carbalicious" than a typical apple. (Don't get me started on how some of the fancier apples can pack twice as many carbs as the more standard brands.  Our carb counting book just gives us a generic count but some apples are very carby.) 

I know it probably isn't necessary but this WONKY NUMBER is going to ruin my sleep tonight.  I've already set my 3 a.m. alarm because if I don't check I'll be up all night driving myself crazy. 

The 3 a.m. Club!

Yes, I admit it.  I'm a member of a club.  The 3 a.m. club!  We have the best parties...just kidding.  I am one of so many family members and caregivers who wake up in the middle of the night to check the blood sugar level of a (hopefully sleeping) diabetic relative.

This isn't a club I purposely joined or ever really wanted to be a part of and yet there I am in the wee hours of the morning padding softly down the hallway trying not to wake anyone (especially not the dog who sometimes decides he needs to be let out to sniff around the yard for half an hour).

I sneak quietly into my son's room and attempt to poke him with a lancet and draw blood without waking him.  I'm pretty good at it now too.  He almost never wakes up.  Or at least he pretends he doesn't wake up.  His numbers at 3 a.m. have been right on target for almost three weeks now and hopefully I don't jinx it with this post.

Some people stay members of this club for years.  Some are told that they can take a break from membership but can't bring themselves to do it.  Others do take a hiatus but that is usually all it is.  If you are helping manage someone's type 1 diabetes you will be awake in the middle of the night at some point for blood sugar checking/management.

I'm currently in the club under a physician's direction.  If/when I am told I can take a break I'm not sure what I will do.  I know some parents that take the break and just feel thankful to be sleeping through the night.  I know other parents who are given the option of a break but can't sleep without checking.  I've recently been talking with a friend who is in the club for herself and despite having a continuous glucose monitor with alarms and a couple of friends that also receive alarms for her, she still wakes up between 2 and 3 a.m. every night because she is just so accustomed to needing to that she can't help it.

When I first joined this club right after my son's diagnosis, it was very stressful.  I didn't know what I was doing, I didn't feel confident in my responses to his numbers, and I was often awake for long periods of the night.  I would wake frequently and check the clock over and over again fearful that I would miss the alarm.  After checking I would have a lot of trouble falling back to sleep with my mind racing.  I've settled into it some now.  I trust the alarm will wake me so I don't check the clock even when I wake in the middle of the night.  After a check I can usually fall back asleep within an hour...sometimes I have to just count my breath 1 in 2 out over and over again to quiet the mind but most of the time I'm asleep again within the hour.  This isn't a club I really want to be part of but I'm thankful too because a lot of families have joined other clubs that don't have as positive outcomes as my club.  My son will likely have a long and full life and the price for that is waking in the middle of the night - WORTH IT!