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...

2020 School Year End

Today is the last day of the 2019-2020 school year. 😏

This year has been quite the adventure.  We got my son's type 1 diabetes diagnosis in December.  My school was closed for snow then when we got back we had a water pipe break and flood part of the school over a weekend and we were closed again.  On March 13th our schools closed due to Covid19 and we've been "distance" teaching and learning at my house.  In the midst of this the black lives matter movement grew exponentially with protests and rallies.

Many years ago, I read a research report on the effects of watching the news in the United States.  I don't remember how I came across it, probably sipping coffee in my pjs while my family slept in.  I often go down a click-road and am often surprised at where I end up.  The research showed that the amount of news watching a person did was directly correlated with the level of unhappiness for that person.  What?  Yes, people who watch the news are unhappy!  Maybe people who don't watch the news are happier because they are oblivious but I know watching the news doesn't bring me joy so I often don't do it.  I rely on my friends and relatives to just give me the important and big events condensed and without the sensationalism.  So then along comes a global pandemic and I'm home all day every day...

I'm not watching the news but I am reading it.  I scroll through the internet in the mornings and peruse the main news topics.  What a bunch of jumbled mess.  I guess I've come to the time in my life when I will now say "back in my day".  I admit I never gave much though to the news and it's legitimacy when I was young but I fantasize that at one time our news was reporting facts.  It probably still is but it is difficult to tell right now.  It seems to be that "news" is just a blatant attempt to out-shock the competition.  This morning in my "news feed" there were four articles back to back that each contradicted the other.  Chasing down my own information was difficult and when I finally was able to find a source I felt confident was providing some research-based information it didn't seem to support any of  the sensational articles I had just read.  I have the time, ability, and desire to chase down a source but many people don't.  I'm guessing they only read the article with a title that matches their opinion or if they read multiple articles they would lean towards their existing opinion because there is no compelling reason given not to.  

I'm digressing...

The school year is over.  For me, and several of my students, next week is going to feel exactly like the previous three months.  I will sip my coffee while my family sleeps, review student's responses from the previous assignment, set a new learning target or make an adjustment to the lessons, and create their assignments for the day or week.  These students will follow the routine their families have set for them and I expect to see each student submitting work pretty much in keeping with the time they have been submitting work for the past three months.  I will still be joining zoom meetings with select groups of colleagues as we try to plan for re-opening in the Fall without much in the way of guidelines or accountability from those who set the guidelines.  

But mostly, I'll have my days to enjoy the sun and my family and sit on my porch with my book and glass of wine or a lemonade. My mind may try to race from the sensational news to the uncertainty about the coming school year.  I will review my social media and try to skim over everyone's personal opinions on masks vs. no masks to enjoy pictures of friends and family.  Time marches on and it will this summer too.  My plans have changed since R & I were planning a wedding ceremony for July but we've cancelled/postponed it.  We feel married already anyway and whenever we have the ceremony we want our people to feel safe to attend.   

Oh the Woes

So yesterday our dexcom stopped providing information for almost an hour.  We hung in there and hoped for the best but it happened again in the afternoon and right around dinner time.  Today we lost signal for over an hour and reached out to dexcom.  They were GREAT! but I'm still tired and frustrated.

A while back I wrote about how frustrating it is to have exactly 90 days of supplies to last 3 months with no backups or spares at the end of that term.  We did get our next 90 day supply yesterday so we currently have 90 days of sensors and one transmitter that should last 90 days. 

When I talked to dexcom today they wondered why our transmitter hadn't warned us that we wouldn't have enough battery because the battery expires at 90 days but our sensor session wasn't due to expire until June 12.  So our transmitter needs replacing today (even though technically it should last until tomorrow I was told) but we only had 9 sensors each lasting 10 days originally so why would the sensor be expiring before we were finished with our last sensor?  I don't know and he couldn't answer it either.  He wondered if maybe I hadn't put a sensor on one day?  No I definitely have put the sensor on each time it was due although we did move it from our initial morning start to the afternoon between sessions once.  

No worries, they are sending us a replacement sensor because we need to end our session early and start a new session with a new transmitter.  I wonder if anyone else would see the problem here.  My transmitter is now going into use two days before it was meant to so we will likely run out of transmitter before our next 90 day supply shows up.  I know this is a minor issue and I should be grateful that we have this great technology and I don't have to poke N's finger 5-8 times per day but I have had to poke it several times yesterday and several times today while we are dealing with all this and near the end of our 90 days our transmitter will run out of battery and this time I won't have another available because they don't ship them a day before the 90 day mark...ugh!

Of course, today is also a day that for some unknown reason, N is running with higher than average blood sugars.  He has been over 200 every time we've checked and each time we give a correction but it doesn't seem to be doing any good at all!  My new community of experts all reassure me that this kind of thing happens.  It could be something he ate, or stress, or growth spurt, or not enough liquids, or a full moon but it is not because I am doing anything wrong.  

That is something I heard myself telling hubby just a few minutes ago when he got home and wondered why we've been high all day and last night and why he keeps getting "no data" alerts.  We're fine, we're good, we've got this under control as much as we are able to have it under control.  I'm tired, I was awake last night watching the blood sugar rise and rise and unable to make a correction because I didn't want to risk stacking insulin.  This is still better than five months ago.  I'm just saying it is a lot and I've only been doing it for six months.  Other people have been doing this for years or their whole lives and without all this fabulous technology.  

That technology sure has it's advantages and some disadvantages.  I can't believe I'm thinking this but I guess I should go ahead and call about the insulin pump.  I mean, I've already been on the phone with medical things for over an hour today, might as well spend another hour or so to get told that we aren't getting an insulin pump yet.  Doesn't hurt to ask though:)

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.

Are you still writing?

Notes & Things

I write little notes on my calendar when I'm happy or stressed.  I don't write them the day I have the thought but I move the calendar forward a month or two or three and write something and then I find it again.  In May these were the notes: 

• Remember when you thought you'd never get a CGM? 
• yep...now I feel like we've had it forever 
• Bet you know the carb count on all the favorite foods by heart now.
• we still have a whiteboard with lots of our common choices and their carb count in the kitchen but I almost never look at it
• R is the best! "I'm thirsty"
• so we were watching a "redneck" comedian one night and he was telling about how his wife said she was too hot and he put down his book, got out of his bed, and adjusted the thermostat - it was a fun show and R and I laughed and laughed at that one since I had just finished commenting that I was thirsty and R got up and got me a glass of water

So a friend asks me a few days ago if I'm still writing.  She knows I was writing a "journal" about my son's diagnosis and how we are all adjusting to that.  I am still writing but clearly not as much and there are two main reasons for that.  First, we are so much more confident in our management now that things don't stress me quite as much as before.  At least, that is what I'm telling myself but probably I'm just more accustomed to this stress.

Second, I'm struggling with the learning curve of becoming a "distance education" provider and it has me on my computer for 4-6+ hours a day.  By the time I have my own time in the evening I do not want to look at my computer and if I do bring it to the couch with me I just end up working some more.  And, of course, both my boys are distance learning right now too.  My teen doesn't need much support to get his schooling done but my 5th grader needs a lot of prompting and cajoling to get any work done.

I've always liked the challenge of picking up a new skill as long as it is something I feel passionate about.  I like the feeling that I don't have it yet but knowing that I will get it.  Thank goodness for that too because I am learning a lot as an educator right now and if I didn't enjoy the push I'd be a quivering mix of exhaustion and frustration.  The high needs programs in my school district met early and frequently when campus closed and we've come a long way.  At my previous school I had a teaching "partner".  She taught the younger grades and I the older right across the hall from each other.  We co-planned, vented, and supported each other and I took that for granted a lot.  It is one of the things I've missed the most in my current position.  

In my current school, I am the only high needs specialist in the building.  Students with this level of exceptional need have only been in this building for the five years I've been here so many teachers have very limited experience with students with ASD or Down syndrome or the other lower incidence disabilities.  I've missed having someone right there to talk to about students, programming, supporting paras, and supporting general education teachers.  

When the campus closed the other two high needs elementary teachers and I made a plan to work together and try to keep our programs aligned in what we were providing and I had a professional community again. We meet weekly and we are keeping each other moving forward and growing.  We agreed on several points right away.  

1. Keep our students connected and supported with calls, live sessions, and videos. 
2. Provide respite when/where we could for families who are used to multiple services and providers who would suddenly be "on-their-own" 24/7.
3. Focus most of our attention on creating supports that could carry forward into the coming school years rather than investing our valuable time in things that would only serve our students in this crisis teaching
4. Keep our IEPs and Evaluations up to date and make amendments when campus reopens

So that is where all my time is going.  We started with some maintenance level binder work and tools that students were familiar with and could do with minimal adult support (for students who could do that).  We were hoping this would give families a way of giving a work task and walking away for 10-15 minutes.  Many families have been able to do that.  

We also set up online learning sessions for families who wanted that option.  I had one family who wanted daily sessions immediately and other families have added them as the weeks have gone on.  At one point I was running 12 live sessions per week but we're down to 6-8 session per week now.  Some families scheduled sessions and were not able to regularly login for them but we kept trying.  For those that are consistently showing up, we're now able to provide positive interaction and social connection, minimal instruction, but we can do some valid assessment of skills that are being taught on our new learning system.

We adopted two new learning systems.  Unique Learning Systems with News to You and Seesaw. I've used News to You for years and really feel it has a place for some of my students but since none of them had used ULS before I couldn't find an easy and intuitive way for them to use it during the closure.  I am definitely seeing the potential in the units and plans and am looking forward to using it for years to come in the classroom.  One of the other programs is relying primarily on this learning platform as her students are firmly at this level.  

The other learning platform, Seesaw, has become my new favorite thing!  It allows us to post our own teaching video and a follow up activity that is interactive for our students.  For my program, we've had over 200 assignments submitted since closing and that is with only a handful of students participating.  I'm going to use Seesaw for years to come and I'm pretty excited about the potential.  For now, it is giving us a way to try to get learning and instruction to our students that is differentiated to their needs and abilities.  

With these options I'm reaching 11/12 of my students.  That last student may be participating in the print work we provided for him but I can't be sure of that.  His family is working at this time and since I can reach them by phone about twice a month I know they are doing their best and just trying to get through day by day.

My first year as a teacher (a million years ago) I had a mentor who was a resource room teacher.  She later became my principal and ultimately is now serving as a curriculum director.  I took her for granted a lot too but I always think about her.  I read somewhere that people don't always remember what you say but they remember how you make them feel and this woman knows how to make others feel heard, valued, and accepted.  I've tried to take a page from her book and be a person that makes others feel valued. We are so very disconnected from others right now and yet it seems to be the one thing that everyone can agree on: we need other people.  We need and want that connection.  So I try to continue to reach out to my colleagues and friends and be available to them as best I can.  I'm pretty good at video calls now so dial me up.  A couple months ago if you told me I'd be staring at myself on zoom for 3+ hours a day I would've thought you'd lost your mind😀