Omnipod!

 We finally received our Omnipod DASH® and then had to wait another six weeks to get both our pump class then pump start class done.  I know there is a pandemic but we are coming up on our one year and were beginning to think we wouldn't be on an insulin pump.  Thankfully having a child with diabetes is like having a baby - you go through all the pain and then you don't really remember it once it is over.  You just look at the baby and are thankful.  Sure the baby is sometimes cranky and difficult but still, a lot of joy to be found there.

Our pump class was on zoom which worked fine for us because we've been using zoom to teach our students remotely since last March.  The class was a powerpoint and just covered the handouts we had already read but it was a hoop to be jumped and we were ready to go.  We were told in that class that our pump orders would go to our Omnipod rep and then we'd schedule our pump start training.  Two weeks passed and we had another appointment with our endo while we waited.  He thought we'd have started but nope. Thankfully that seemed to get something moving and our ominipod rep called the following Monday and we had our pump start virtually that same Wednesday.

I will say there are a lot of pros to the Omnipod for our son and us.  Our rep walked us through our first pump site and it took only ten minutes.  We've done three more since then and felt confident.  Our son is thrilled that it doesn't really hurt and that he doesn't have to have 5+ injections per day anymore.  

We definitely don't have the right numbers plugged in yet so that isn't awesome.  We had been running on Multiple Daily Injections in range between 80-180 80% of the time with some days even better control.  Now that we've been on the pump we are in range <20% of the time.  Part of that is because we don't give a correction except at our 3 meals right now unless he is over three hundred.  Our pump is also set to not give a correction until it has been 4 hours since he last bolus but he eats lunch 3.5 hours after breakfast, and is always high, and no correction is given due to perceived insulin on board.  I know this will get adjusted over time and eventually things will be back to in range.  His BG on the insulin pump is a much straighter line without major peaks and valleys, it is just a line that is about 230 instead of 120 where we want it.

The BG Roller Coaster

A couple days ago I miscalculated an insulin correction.  Well, actually, I calculated it perfectly if he was sitting still and resting but since he was exercising at the time I should have given 1/2 a correction.  N has been going high from 2:30-5 daily for a couple weeks now.  This also coincides with the time of day that he likes to play games on the virtual reality with his arms flailing wildly as he fights with a sword, or he is jumping and crawling around through tunnels hiding from enemies. 

Hubby told N that I react to his Dexcom readings like I am riding a scary rollercoaster.  I don't like rollercoasters and I have a lot of angst when BG is out of range.  I watch the Dexcom numbers obsessively until he is back in range.  Hubby says it looks like I'm hanging onto the rollercoaster bar as we go racing down, down, down into the "red" low zones or leaning back anxiously as we click, click, click up the rise heading for the terrifying top.  That is, in fact, how it feels to me sometimes.  I admit it.  I like to keep things under control.  I like to keep things even and smooth and not just with blood sugar; that is how I like everything in my life to be.  Stable.

So I gave too much insulin while he was exercising.  About an hour later he stopped exercising.  His blood sugar started plummeting.  He was at 290 then five minutes later his reading was 256, double arrows down.  Still high though so nothing to be done but watch and worry.  Within 20 minutes he was under 80 and still had double arrows down.  We gave our 15g carbs and were supposed to wait fifteen minutes.  I was freaking out but N said he still felt fine.  Ten minutes later his number was 52, the Dexcom was alarming that he was much too low, and we gave another 15g carbs.  Ten minutes later N was laying on the couch, white as a ghost, shaking hands, no color in his lips, saying he felt "WEIRD" and another 15g of carbs.  Hubby was keeping him talking, I was on the phone with my sister getting the "pep talk" to give the emergency med if we needed.  I have not had to give the emergency med and I'm not looking forward to it.  

Finally, the double arrows down were replaced with an angled arrow down, and the BG only dropped by a few points.  Now I knew we'd given 45g of carbs with NO INSULIN to cover it so I figured we'd be rising and rising soon.  When he got back above 70 we gave him dinner (about 30 minutes early) and made sure that dinner was mainly protein but still  it included 30 carbs (which is a light-carb dinner at our house).  He'd gotten back above 100 at that point and I debated with Hubby and Sis about covering dinner with insulin or waiting and correcting again or ... 

Things all worked out fine.  We were a team working towards the common goal and everything worked out fine.  I have guilt about it but I know I am human and making mistakes will happen.  I have routines and procedures to minimize error and this time I had skipped a step.  We usually confirm math/doses with another person.  Mostly Hubby & I check each other but sometimes I have N check.  Hubby wasn't home when I gave the correction.   

N's BG did spike back into the 200s but it was back in range about forty minutes after that, although we did decide to cover the dinner carbs we didn't do anything about the 45g of carbs that brought him back up.  We usually give 3 units of insulin to cover 45g of carbs.  I had clearly given TOO MUCH INSULIN.  If you've never seen 1 unit of insulin...it is a teeny, tiny, amount.  The difference between healthy and safe and sick and low and dangerous is the size of a pea!  

Three hours later was bedtime snack and we were right back on our routine.  He was close to his bedtime BG so we covered snack and moved on with our night.  Hubby did double-check numbers this time.

I couldn't sleep though.  I worried and stewed all night.  Thankfully we have the Dexcom so I could just roll over and look at my phone and know he was fine.  I didn't get out of bed but the worry was there.  He had a lovely, flat, in-range line all night long.  He woke up the next morning bright-eyed and bushy-tailed.  Kids are so resilient.  They don't hold onto things like mom-brains do.

I'm thankful for our support people.  I had hubby and sister and if I things kept going south I was ready to call another T1D mom and I'm sure she would've jumped in her car and been here to help walk us through that emergency glucagon.  I'm glad it didn't come to that.  One day it might. 

6 Month Check Up

or check in, or appointment...

We had our second virtual meeting with our endocrinologist this week.  We haven't had an "in person" check up since our 30 day meeting back at the end of December, 2019 thanks to Covid19. 

Our first follow-up appointment was 3 months post diagnosis and was a phone call.  This is our 6 months appointment and we did it via zoom.  I know everyone has different experiences but we've felt super positive about everyone in the medical profession we've worked with since our son arrived in the emergency room the night he was diagnosed with type 1 diabetes in diabetic ketoacidosis.  

We checked into our zoom meeting by first filling out a question form and providing our questions and concerns as well as our current ratios and insulin dosing habits.  A nurse showed up in our meeting next and went over our concerns as well as empathizing with our frustration about the "brakes" that have been placed on our desire to start N on insulin pump therapy caused by the corona virus distancing limitations.  She was understanding and helpful.  

We met with our endocrinologist next and he had obviously spoken with the nurse because he listed our concerns first and made sure we got answer to our questions.  We then reviewed my son's CGM data (still loving that Dexcom G6).  We talked through some high-glucose times we have run into lately and then really jumped into how we could get started on that insulin pump.  We settled on doing our first "pump assessment class" in a condensed version right away.  We are now waiting for our insurance pre-authorization team and whatever hoops we need to jump through for them.  

While we had left the hospital in December knowing we would ultimately have our son on an inuslin pump we have had to modify our timeline.  Insurance-wise, he became eligible for the pump at 6 months post-diagnosis on June 9th.  We knew we'd need to start early based on our experience getting the continuous glucose monitor so we started those conversations at our 30 day check but by our 3 month check the novel corona virus had shut down everything in our state and we suspected it would delay things.  After our appointment in May we became concerned that getting insulin pump therapy may be delayed until 2021 but I'm currently still holding out hope that we'll have N on his first insulin pump by his diaversary in December.  

I can't believe I'm already thinking about his 1 year anniversary of diagnosis.  Probably because my friend D posted about her daughter's diaversary on facebook recently.  I remember the first few nights we were home from the hospital and I called the endo nurse every night...yesterday I gave an over-calculated a correction (by a lot) and we dropped into the scary low range.  We even got out the dreaded red-boxed glucagon but it never occurred to me to call the endo nurse.  We've come a long way.  (D, if you are reading this, you were the one I almost called :)).  

So we are on our way to an insulin pump and we've been using our CGM for over four months now.  Our numbers are looking pretty good.  N is out of range 30-40% of the day right now but our endo says that is fine and probably equates to an A1C of 7-8, which he says is fine but I know it is not as good as we want it.  We actually don't know his A1C because we haven't done it since we were in the hospital when it was so bad that no one wanted to tell me what it was; we were told it was over 11 though.

We were supposed to have received an A1C test from home kit a couple weeks before this appointment but it never came and since they hadn't told me it was coming I didn't know to report it when it didn't show up.  I am curious what it will be.  Our Dexom gives us a "best guess" based on our CGM reading and so if it is near that number we are doing okay. 

We scheduled our next appointment for October and it will be virtual again.  We will have to go to the Children's Hospital 2 hours away for the one after that, probably, but we'll see when we get closer.  Our team told us we were doing fine.  We try our best, re-read parts of our pink panther book every couple months and try to make smart, sustainable changes.  

Things are not as scary or difficult as I feared when I got the diagnosis.  We've adjusted to our normal but we still want the best possible outcomes for N so we are fighting for that insulin pump.  That being said, we choose an insulin pump that doesn't yet have an auto connection to our glucose monitor so it won't be able to act like a pancreas on it's own like some of the others.  To remain competitive, I know that technology will come and for our chosen pump it is supposed to come next year but we'll see if that happens.  We didn't chose the pump that had that capability for a variety of reasons but the most significant is that our son is 11 and we want his first experience to be as "low impact" as possible and that meant an easy site insertion and limited fussing with tubes or removing for showers etc.  This is best for his life-style as an 11-year-old boy and in four years he will be eligible to make a change and his life/needs will be different as he enter High School.  

I still feel blessed, looking at him, that he is in our life and he will have a happy and full life.  That maybe wouldn't have been the case just 100 years ago during my grandparent's time.  I am thankful that I live now and that our son's illness is so very manageable. 

A day in the life!

So what are you doing with your summer vacation?  This seems like a silly question to me, right now, with a global pandemic, and from someone who lives nearby and visits with me regularly.  You know perfectly well what I'm doing...nothing.  So what does nothing look like for a teacher and mom of a son with type 1 diabetes?

4:30 a.m. My son's cat scratches at the bedroom door.  He is an indoor/outdoor cat but we don't let him out at night because he is the WORST FIGHTER EVER!  He has been to the vet so many times for scratches and bites that have gotten infected.  The vet is pretty sure that he likes to test his strength against raccoons and hasn't yet learned that he can't win.  So he has to stay inside form dusk til dawn but at the crack of dawn he starts moaning about trying to get me to open the cat "freedom" doors.  I always give in too because if I don't just get up and open the door he will sit in N's bedroom and bawl.  I then go back to bed.

6:30 a.m. My other son's dog stands outside my bedroom and shakes and shakes his head to make his collar rattle so I will know he needs to go out.  Ugh!!! I got these animals on purpose.  He can't have a dog door because the cat would use it to go outside and brawl so he is stuck inside overnight too and by this time he has to pee.  He is 12 years old so I take pity on him and let him out.  I try to let him out the back door without letting my cat out of my bedroom.  If she makes it out of my bedroom she will get lonely in about 30 minutes and start singing in the kids' hallway but if she stays in my room she will get back in bed with me.  I go back to bed but 9/10 I cannot get back to sleep.

7:20ish a.m.  I give up.  I'm wide awake.  I get up, let the cat out, let the dog out again, and make coffee. Now this is the golden time in my day.  All the other humans in my house are asleep  No one needs anything!  I can sip my coffee and enjoy my solitude.  This is when I can get things done too because there are no interruptions but I can't do anything that would wake the others.  Most days this is sipping coffee, scrolling through facebook, and completing any online professional development work I am doing.  This summer I'm also on a couple of school district planning teams so this is when I work on those tasks too. 

8:30is a.m N wakes up.  BG check, insulin injection, and make his breakfast.  He likes his morning to be spent in his room so he gets his T1D stuff out of the way then heads back to his room to play on his computer or watch netflix and waits for me to bring his breakfast.  We've come to some trial & error timings that work for us and we've found that if he wakes up in range he should get his breakfast 25 minutes after his insulin.  If he wakes at the higher end or above his range he gets his breakfast 45 minutes after insulin.  He eats cereal and bacon every morning (if I don't force him to try something else) so we know what works for this breakfast most of the time. 

9:15 a.m. Breakfast is delivered and no one else will be awake for a while so out to the garage I go to walk on the treadmill for 30 minutes.  Here is what I know about me and exercise...we aren't really compatible.  I give myself full permission to refuse the treadmill any day I want but I have to go out and turn it on and walk on it for 1 minute before I can choose I don't want to do it.  Most days that means I go ahead and walk for 30 minutes.  About once a week I just do the 1 minute. 

10:00-Lunch This time is continuing with work meetings, professional development, setting activities for the student who is still doing online work, or my own personal projects like painting or sewing masks or reading a book.  I'm into the sewing right now so that wins most days.  I have watched some painting tutorials but haven't done a new painting this summer yet.  It feels like I don't really feel like it is summer because I don't know what the plan for fall is going to be.  I'm hoping that after our superintendent gives us the plan I will be able to relax for a couple of weeks before I start back into it. 

After lunch there is a long stretch when there will not be a need for insulin so this is when I might visit my dad/sister at their house or I will go for a walk in the park with my mom.  If I don't get out of the house then this time is spent procrastinating household chores while binge watching netflix.  Sometimes I do laundry or make masks to feel productive.  Today I researched if I want an embroidery machine or not while watching the Mysteries of the Abandoned marathon. 

4:00ish is when I start making dinner.  A thankless dinner that will take between 20-60 minutes to create so that the two humans I built can spend 6 minutes eating it and about that same amount of time telling me they don't really like X,Y, or Z about it.  I don't enjoy cooking.  I've written about this before and I'll write about it again but it isn't getting any more enjoyable for me.  I don't mind the parts of cooking.  Chopping onions, slicing bread, putting rice in the cooker, stirring sauces.  I don't mind any of that but the sum total of making a meal is a loss for me. 

Dinner is between 5 & 6 and comes with insulin and timing issues.  We were eating at the table every night before Covid19 shut us down but now we don't seem to make it to the table more than a couple times a week.  Everyone is so involved in their activities and their schedules are all wonky from being home since mid-March.  Also, there is some sorrow in following our dinner routine since we aren't able to engage in a lot of our other routines of the summer.  Usually we would be discussing our upcoming vacation plans or reliving our recent vacation.  We'd talk about the friends we'd seen or who we had spent time with and what we were planning for tomorrow.  It isn't very interesting to talk about staying home and how we will be doing more of that.  We don't even talk ahead about fall so conversation can be kind of stunted.  The boys are all building a new gaming computer together so lately that has been the conversation but once it is done who knows.

Evening    After dinner is the first time R and I really spend any time together.  He is a very outgoing and busy guy and he can't sit in the house like the rest of us.  He isn't content to play video games all day or watch TV.  He needs to expend some energy so he spends most of the day working outside in the yard, visiting his mom, walking in parks, pokemon hunting in his truck, or running errands.  Now he and I have a couple hours before bedtime to hang out together and we spend it trying to find something that we both want on TV but this is futile.  We should get back to playing cribbage, which we used to do every evening.  I'm going to get out the cribbage board tonight...I've decided. 

8:00    Snack time for N with insulin to get his BG to about 150 so he can go to bed.  He finishes his snack and he and R read a chapter book together.  M grew out of wanting to read with me when he started middle school and N is starting middle school in the fall so I'm not sure how much more time we're going to have for this routine but we are enjoying it while it lasts.  

9:30    N and I are both in bed.  R & M stay up later.  R comes to bed by 11 usually and I hear M do his nightly bedtime routine at about 1 a.m.  

11:30     I naturally wake up at about this time after months of T1D.  N's BG comes down at this time of night from his snack and it can drop by quite a bit so I just peek then am back to sleep (most of the time).  If he doesn't drop below his range between 11:30 & 12 he probably will stay steady through the night.  Before the Dexcom, we were checking BG at 3 a.m. and found him low quite a lot.  Since we've gotten the Dexcom and refined our practice we've found that if he never goes low at 3 a.m.  He goes low between 11:30 & 12 or not at all.  Pretty much.  Who knew.

Not thrilling but this is what we do.  It's funny reading it.  I feel so stressed and worried so much of the time right now that when I read back through this I'm wondering how I spend all my time.  It isn't wasted because I'm using it but it sure doesn't look like I'm using it for productivity.  Ah well.

The Waiting Game...Again

So here we are again...waiting.  We are six months post-diagnosis and should currently be eligible for insulin pump therapy which is exciting and we've been waiting for this time but we are currently

WAITING

Our Children's Hospital was wonderful while we were getting our initial diagnosis about providing us information and training and they have been available as we've progressed in our journey and we've made it clear from the beginning that we are interested in insulin pump therapy as we know it will better keep our son in a healthy range.  At our 3 month appointment, held via phone call, we told our endocrinologist that we wanted insulin pump therapy and wanted to do anything we could to be ready when he reached 6 months which is when our insurance company will cover the insulin pump.  At that time we were told they weren't holding classes but maybe they would have them virtually over the summer. Due to the pandemic we haven't been able to attend any training on insulin pump therapy but we aren't too concerned about our ability to learn what we need in a distance model.  

We have done our own reading and research and yes, we've watched youtube videos and read blogs of others with type 1 diabetes.  We talked to friends who have insulin pump therapy as part of their lives. We  narrowed our scope to two devices, got a trial of each device and ultimately chose the one we felt would be the best "first" insulin pump for our son.  We have been keeping in contact with the insulin pump representative in our area and were made aware that our insurance wasn't covering the existing PDM for the pump until their next update and we've been told that the update occurred and insurance will start allowing coverage of new prescriptions for this insulin pump this week.  Fingers crossed but I'm only hopeful, not really optimistic.  I am pleased because this means we will likely get this done before fall but I'm not holding out hope that we'll have the insulin pump easily or quickly.  It took a lot of calling and sorting to get the approval on our CGM so I'm guessing this will be the same rigmarole.  I'm ready and willing to spend hours on the phone and feel that frustration but I wouldn't mind being spared the experience so fingers crossed.

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.   

How is an Insulin Pump like a Pandemic?

So I'm a fairly new to type 1 diabetes parent.  My son was diagnosed at age 10 less than six months ago.  I'm also an educator during a global pandemic that has closed schools across my country.  I've been working / teaching from home since March 13th and it is now May 30th.  Our county is on a stay home stay safe order and while other parts of our state are moving to slightly fewer restrictions, my county didn't meet the minimum criteria for that yet.  Certainly, I'm not an expert at any of these things but I have come to an understanding with my own emotions at least.

It seems there are a lot of powerful feelings related to the pandemic and the resulting recommendations.  There is fear, loneliness, anger, regret, resentment and the whole gamut.  I had a conversation with a friend who said she'd just rather die than keep living with all these restrictions.  She said it was "no kind of life".  

I talk to educators and parents every day.  They are tired, they are frustrated, they are done.  They want life to go back to normal.  Kids back in school, economy open, going to work, coming home, enjoying their time off, going out on the town and all that comes with a healthy world.  

Many want to blame someone, to point a finger at another person and say "you are doing this to me and it isn't fair."  To feel that this situation is being forced upon them (which it is) but they want a person to be responsible.  I understand.  If a person, or government, or conspiracy, or whatever were behind this then it can be changed, channeled, fixed.  I have a lot of empathy for their feelings and their struggle. They want someone they can call and tell that they need X,Y,Z for their quality of life. They've tried to be good and follow the rules but they don't want to wait anymore.  

On a separate and yet related note.  We've been waiting for our son to be approved for an insulin pump by meeting all the requirements of the insurance company which included being six months post-diagnosis.  That means we should be able to get started on pump therapy in June. We've been working with our medical team and the pump company to check off all our requirements.  There were concerns about the inability to attend training during the pandemic and how could we meet those requirements at a time like this but these issues have been resolved and creative ways have been found to meet those.  We thought we had things set up and ready to go and have been quietly marking the days off in our minds to a time when our son's quality of life & diabetes management would be improved as he moved from multiple daily injections to insulin pump therapy.

About three weeks ago, I got a phone call from the insulin pump representative.  The insurance company has suspended new prescriptions until the next update on the pump we've been working towards.  We were planning to get a pump at the beginning of June and instead we may have to wait until the end of July or beginning of August to get started on the pump.  

I felt all my feelings about this.  Anger, resentment, sorrow, and exhaustion.  I want to be angry at someone.  I want someone to blame so I can call that person up and tell them how important this thing is to me and my family.  How it will make our quality of life so much better.  How we've been struggling and waiting for this to make it better.  We've tried to be good and follow the rules and we don't want to wait anymore.

So How is an Insulin Pump like a Pandemic?

Maybe you already know what I'm about to say here.  The pandemic SUCKS! Waiting for an insulin pump SUCKS!  Yes that is true on both counts but it isn't the only way these two things are alike.  The insurance company won't let us have an insulin pump!  The government won't let us live our lives! I hear these statements more as demands in my head as I read them back.  These aren't really the truth of the situation on either count.  Does it change if we ask them as questions...Why won't the insurance company give me an insulin pump?  Why won't the government relieve the restrictions?

If I assume BEST INTENT then the answers are the same.  Waiting SUCKS but it is necessary for the greater good. I'm not knowledgeable enough to make all the decisions because I can't be knowledgeable in everything.  I have to rely on experts. What has the greatest positive affect on me may not be best for the majority.  I have to rely on the systems and structures that are part of my country; things I've had a vote in. Are all the elected officials people I chose?  NOPE but I have faith that the system will keep the greater good going.  Maybe I'm naive.  I know an individual person can be selfish, I'm proof of that all on my own.  These people, in these positions, are working under a set of guidelines meant to account for the most positive outcome for the majority.  

We have leaders on purpose whose job is to work towards a greater good.  My medical providers and the insurance company are also working towards a greater good.  In order to work towards a common good that supports a majority then...

I DON'T ALWAYS GET MY WAY!

I've talked this over with some of my very close friends and we all come to the same conclusion.  We don't always get what we want right now, in this moment, even though we may be good and deserving and doing all the right things because we live in a society and a community.  This is HOW I support my community.  Vote, work, try, live, laugh, love, accept, empathize, and assume best intent.

Again, I know it seems naive. I know not every human in a position of power is putting the greater good in the forefront of their mind/actions.  I know the insurance company has a bottom line.  I choose to believe most PEOPLE are good and I choose to believe that those in positions to work for the good of society will do so.

If our leaders threw open our world today and it was too soon the losses would weigh on all of us for the rest of our lives.  

If the insurance company ignored their policy and it had a negative impact on an already compromised group's health we would hold them accountable.

Our community will eventually move forward with a lessening of restrictions and my hope is that it will be well timed and the cost won't outweigh the benefit. My son will get on insulin pump therapy and my hope is that the cost won't outweigh the benefit.

I'll wait.  I'll do what I can.  I'll check my privilege and entitlement and trust in the best intentions of those who are meant to advocate for the welfare of the whole community.  I don't really have a choice in this waiting or how long it will take but I always have a choice.  I can choose to make it miserable and filled with anger and resentment or I can choose to make it a moment of grace, patience, love, and acceptance.  In a life that may last 100 years, this time will seem but a moment when I'm looking back.  I'd like that moment to be one I'm proud of.

I appreciate my life in all of its highs and lows. 

Birthday Diabetes!

Nighttime Highs & Lows

This is my son's first birthday with type 1 diabetes.  He is still sleeping this morning while I have been up for two hours sipping coffee.  Incidentally, I was also up for two hours last night but I wasn't sipping coffee then.

I am so thankful we have the Dexcom continuous glucose monitor that lets me "follow" his blood sugar on my phone.  I can crawl into my bed each night and know that I don't have to check on him because my phone will let me know if something isn't right.  I said I don't HAVE to, I find that I do stand outside his room peeking in at him several nights a week.  Having a newly diagnosed type 1 is like getting a new baby - you pretty much are fiddling with the child every few hours and when things are finally settled and good you watch them sleep.

Well last night the thing that wasn't right was he started running high.  This is a pretty rare nighttime occurrence for him; low is the usual play.  I don't know if his insulin just wasn't covering correctly, or maybe we didn't get a good injection spot but it was like we hadn't given him insulin at all for his bedtime snack.  Up and up he went.  I have my phone set to alert when he is over 180 for 30 minutes although that isn't a number that concerns me much these days.  Half hour later he was over 200 and half hour after that he was over 250 and still arrow pointing up.  I did peek into his room and he was very rosy cheeked, all his covers were kicked to the foot of the bed, and his fan was aimed right at him...poor guy!

Since we don't have an insulin pump yet or an intelligent insulin pen we have to wait 3 hours before giving more insulin to avoid the "stacked insulin" low.  But I did wake him last night and deliver an extra insulin injection to get those numbers back in range.  Not a great sleeping night for me but thankfully the extra injection did the trick and he was back in range about forty minutes after I gave it.  Then I slept poorly for a while worrying that he would be low next but he held a steady line for the rest of the night.

The night before last I was up for two hours too.  That was a more typical event for us, the dex woke me at about 11:30 pm with a low alert.  I woke him up and gave him 15g of carbs in the form of apple juice.  Then I waited and watched and waited some more.  It was about 12:15 when his levels started coming back up; I knew they would so I avoided the urge to give another 15g when things didn't turn around right away.  It is funny how much we've changed our management since those first few nights home.  Originally I would give 15g, wait 15 minutes, and give more carbs if his numbers hadn't turned but what we've found by looking at our data over the past few months is that he takes a long time to digest.  So if we follow the 15/15 at night we end up taking him from a low to the upper 300s about 75 minutes later.  We have to be a little more patient which is hard when your phone is beeping and the number is just sitting in the low range and you are a worried parent. 

Happy Birthday & Celebrating = Food?

As I was saying, my son is turning 11 today!  Such an exciting time for him.  He is having a quarantine birthday since our state is still on "stay home, stay safe" orders.  No friends over, no going to the trampoline zone, nope, nope, nope.  He'll get a quarantine birthday story & maybe I'll get him a t-shirt about it. Stores here have been closed for weeks and shipping from online options is delayed but we have our fingers crossed as his gift says it will arrive today (after being delayed 3x). 

Since N's diagnosis I have become VERY AWARE that we use food as a celebration in our family.  I knew this before but it is very apparent now that our celebrations and joyous times are often tied to sweets and foods.  I've been struggling with this over the past five months as we've gotten more accustomed to life with type 1 diabetes.  Cupcakes, cookies, brownies, root beer floats, french fries, chicken nuggets, fast food, eating out, bread, rolls, biscuits, yep - we like food rewards in our family.  Makes us happy but for one member of our family it doesn't always make him feel good.  Today we will try to balance our food-based celebrating with other ways of celebrating.  We've done this with some success at each celebration since our December diagnosis.  I'm sure as the years roll by we'll be less and less food driven and create new norms but this year it has been difficult to figure out what to substitute in for our previous habits.  

Today we are going to have home-made air-fryer mozzarella sticks and veggies for dinner to keep our carb count low so we can add in a cupcake or two.  We have to get creative due to Covid-19 anyway so we are adding chalk highlights to our hair for fun and if the weather cooperates we'll be doing some tie-dye in our backyard!  Here's hoping this birthday is memorable for being unique and fun!

(At bedtime my son says "today was great! wasn't it mom?" Yes it was)

Stay Home, Stay Safe, Stay Strong & Insulin Pump Therapy

Stay Home, Stay Safe, Stay Strong, Stay "Sane"

So we are almost to spring break here!  Just two more days.  Of course neither I nor my kids and hubby have set foot on our respective school campus' for the past two and a half weeks.  We are staying home and staying safe.

My older son is a junior in HS and he is taking several AP classes that are meeting via zoom and continuing with their syllabus.  He also tried to update a bunch of his programs on his computer, crashed the whole system, and had to borrow my computer to do one of his online classes while I had to keep working from my phone.

My younger son is a fifth grader and his teacher is sending renew, refresh, review activities but they don't seem very essential so we aren't doing most of them in favor of working on Khan Academy and exploring science, cooking, gardening, and hobbies (things we don't usually have much time for during the school year). He is also getting used to all the extra information we have with his CGM and all the "let's try..." that I keep saying to him trying to reduce his post meal spike.

As teachers of children with low incidence disabilities, hubby and I have been working with our school administrators to review learning platforms, conducting zoom IEP & evaluation meetings, and using shared working sites to collaborate with other special education teachers and staff to create specially designed instruction models that will serve our students from a distance without expecting parents to suddenly become learning partners or teachers assistants.  This has been no small feat when we are looking at a range of skills from within 2 years of grade level and working on academic content to catch up all the way to just learning to respond to yes/no questions using eye gaze.  I'm actually putting in more hours and working harder than when we are on campus and truthfully I just wish we could go back.  I miss my students and colleagues.  I miss the routine.  I miss being in my element.  But I am happy that I am able to stay home with my family and am fortunate that I am keeping busy and not spending time worrying.

Insulin Pumps on the Brain

We had our visit with our endocrinologist this week via phone call.  It was convenient to have dexcom clarity so we could share his last two week's data with them and we all got to look at the same information.  I'm anxious to start the process of insulin pump therapy but we will have to wait until 6 months post diagnosis for insurance and that won't happen until June.  If getting the dexcom approved taught me anything it is that I should start working on things now.

We've actually done a lot of research already on the main pump options available to us and have it narrowed down to just two.  We've spoken to reps from each company, we have handouts and user guides, and we are even getting a sample of one.  We've talked with all our new friends that have diabetes or are caring for a child with diabetes to see what they do and don't like about the pump they are on.  We've watched videos of the site change for each device.  We definitely see pros and cons for each option and it feels like a HUGE decision.  It will be his pump for at least 4 years before we'll be able to change to something else if we don't like it.   I know someone who has an insulin pump but chose to go back to multiple daily injections because she finds the pump too frustrating.  I do not want to end up in that same situation.

It does seem that insulin pump preference has a lot to do with how you live and what you need but when you are first starting out with this diagnosis it is difficult to have any real idea what is and is not a match for your/your child's lifestyle.  Adding to the difficulty is that we've been home for three weeks so as we think about things our vision of life and what we need is skewed.

Things to keep pondering, goodness knows we have the time right now.

Stay Safe

Covid19...Staying Home

Well, we've been home for 10 days now and counting.  I'm thankful hubby and I are both teachers so we are currently working from home during the week and are able to be home with our kids and not having to worry too much about the financial implications so many others are facing.  We have our home, plenty of items in the pantry, and an exorbitant amount of home entertainment.

So what are we doing?

N and M have been keeping busy on their computers; mostly keeping to their rooms.  Since they were already connected with their friends digitally the only difference for them this week was that they didn't go to school.  They are staying pretty entertained with online gaming and social media.  Since I work in the school district where the kids go to school, I knew where we weren't in the process of figuring out how to provide for kids with school campuses closed.  It made it easy to decide that we'd give ourselves this first week as spring break.  I didn't put a schedule into place or stress about the "missed" educational opportunity.  We just took the week as a break with the kids taking the lead on how to entertain themselves.  I figure as they satiate themselves on their leisure activities we can start adding in academics and make a more formal schedule.  We have implemented a new physical education program though - we got a virtual reality gaming headset and we each spend at least 30 minutes on it playing games that require physical exertion.  The sweatiest game is the one where you use your swords to bash these blocks in time to music; love it!

During the week I participated in my first ever Zoom meeting with the special education staff.  This was a great practice run for me since this is likely how I'll be doing my IEP and evaluation meetings for the next few weeks.  We had a good discussion about how best to support our families of students with complex special needs during the school closure.  Not sure what the ultimate resolution is going to be but we were able to put together some resources and start reaching out to community programs that may help.  I had originally thought we might try to work directly with our students outside or in smaller groups on campus but after watching the news for the past week I guess that was just naive thinking.

Hubby & I decided to go ahead and start on the "summer project list" that we had going.  I'm staining the kitchen cabinets from an orange 80s oak to a darker mahogany.  I love the way it is turning out but it is a LOT of work.  Hubby spent time at his rental property as his renters moved out at the end of the month.  He did some minor fixes in the house, cleaned up the yard, and installed a new fence.

Today Hubby is in our backyard taking down one side of our dilapidated fencing and putting in new.  The recent windstorm was pushing our fence over so it's good we have time to get it back in shape so our beagle can have freedom in the yard.  I was up a lot over the past three nights so I took it easy today; just installed some new shelves in the kitchen for cookbooks and knick-knacks.  I'll be back to staining cabinets tomorrow.

So what does staying home/distancing mean for our son with T1D...not too much.  I'm feeling really grateful that he got his dexcom G6 supplies right before this all started.  We've had his first sensor on for about 8 days now and we're finding it to be a blessing in a cursed fashion (those nighttime alarms are a beast).  Since he isn't attending school this week we weren't sure how his body would respond.  He consumes more carbs on the weekends usually than during the week so I figured he'd be running higher on the blood sugars but he has been more active at home than he is at school so he's actually been running on the low side.

The past three nights the dex alarm has gone off warning of low blood sugar and downward trends.  Of course this falls on a weekend when I don't usually hear back from our team when I send in numbers and I'm not confident in making too many adjustments myself.  I re-read the chapter in my pink panther book on thinking scales and dosing though and tonight we're going to lower his long-acting insulin.  Hopefully that allows us to get some sleep.  Last night that alarm went off 3 times and he ended up having 45 carbs with no cover to make it through the night in a safe range.  WOW!  Good thing we have the CGM or I would be awake all night checking on him.  We'll send in numbers Monday morning and will likely hear back on what to do within a few hours.  I'm exhausted though from being awake although I'm thankful we have the dexcom so I can sleep knowing that if he goes low it will alarm and wake me up...which it did...over and over again.  I'm blaming the new VR gaming system.  He has been playing those active games for about an hour in the morning and an hour in the evening after dinner.

Overall our first week on distancing and staying home has gone well.  We're in the middle of several projects to keep us busy.  The kids are happy enough and not too bored yet.  Time will tell but I'm sure eventually we will begin to feel a little stir crazy.  I don't have a high social need so this is pretty nice for me but Hubby likes to spend time out socializing and he will likely get tired of being couped up at home.  M is more like me, he likes to be at home with his things and he can spend as much time as he wants visiting with his friends online.  N likes to see his friends and do active things so this may end up being harder for him.  Time will tell.

Getting Used to CGM

We're up and running with our Dexcom G6 and we love it; especially N who is the one wearing it and getting a reprieve from all the finger poking.  He was very nervous to do the initial insertion but it went smoothly and he said he barely felt a thing which was a relief for both of us.

We started his first Dexcom cycle on Saturday right after breakfast and we have only done a finger poke check 1 time.  It's funny how you become comfortable with the old and familiar though.  I've wanted to confirm his readings a million times since Saturday but I'm resisting the urge.  We are getting good, reliable readings and he shouldn't have to poke his finger just because I now know we aren't managing things quite as well as we thought.

Things we like:

• easy to insert with little pain and easy to follow directions
• readings are excellent, update every five minutes
• device can be set for a high and a low alarm in addition to the non-optional critical alerts
• can be read on the sensor or a phone app 
• turns out my son doesn't have a supported model of phone so we'll be upgrading soon
• once he has the right phone his numbers can be shared to my phone so I'll get alarms too
• downloading to a computer is easy and the information is presented well, easy to read, and is already making a difference in how we manage
• you can add information like when/how much insulin you give, carbs, exercise etc
• this is a plus but I keep forgetting to do it - I'm so used to writing in the book that it has become automatic but inputting into the sensor isn't happening consistently yet

Things we aren't loving:

• alarms - These are a plus for me but they are a challenge for N.  He has mostly been relying on the adults to manage his numbers and make sure he stays in range.  We may insist he have extra water or ask that he take a break from the computer and get some physical time and he is always very easy going about it but he hasn't really been paying attention to why we make these requests.  With the alarms he is the one who gets the alarm and reads the message.  He then comes to me to figure out what we should do.  Again, this is a plus because I am able to discuss what is happening, why, and what to do but for him the first few days has been more stressful.
• Stickiness - he has been wearing his dexcom for three full days with light activity.  We are on social isolation due to covid-19 so he isn't going to school and we aren't really leaving our house.  The sticky tape holding his device in place started peeling up on day two and it is supposed to keep the device in place for 10 days.  Thankfully we have amazon delivery and we've just received some over-patches to try to keep it in place for the duration.  We'll see how they do.

Now for the reason we got the dexcom in the first place; it is supposed to help us do a better job of staying in his range.  Turns out when you have more data/information, you realize you weren't managing things as well as you'd thought.  When we were only taking data every three hours, before a meal, (and of course the middle of the night data) we were seeing that most of the time he was in range.  We were feeling pretty confident.  That's probably why they don't want you to start of on a CGM because the learning curve would feel much steeper.  Now that we have the Dex we see that we are spiking after meals, sometimes into the 300+ range!  He also hangs out in the mid 200 range for about 2.5 hours at dinner and comes back into range just before the 3 hour mark.  So we used to think we were doing well at our dinner management but hmmm not so awesome.

The positive to all of this is that knowing is helping us to make adjustments.  We've pushed his wait between insulin and eating to 20 minutes and that made a noticeable difference in the severity of the spike in numbers.  The first day we just did our normal thing and didn't worry about things.  Day two we started paying attention and thinking about adjustments.  Yesterday we made adjustments to the wait between insulin and eating and also some changes to the bedtime snack options.  Today I looked at all those graphs on my computer and see the benefit of the changes and where we need to keep adjusting. 

It is a whole new game having the continuous glucose monitor.  Turns out I've gotten a benefit from the corona virus, we are home and able to spend time figuring this new information out and how to manage better with some time on our hands.  There's that unexpected good in an otherwise unfavorable situation.

It's finally here! The Dexcom G6!

It finally happened.  Our son's Dexcom G6 was approved by insurance and was overnight delivered to us yesterday.  So much excitement for this very expensive new piece of equipment.  We paid our entire out of pocket maximum and deductible for this one device but we are thrilled and believe it will definitely be worth it.

Since this is our first ever continuous glucose monitor we are very unfamiliar with how previous models worked before.  The only thing to compare it to is the finger pokes every three hours we've been doing and I am not going to miss those. With the G6 we don't need to do calibrations or finger pokes to check numbers before treating.  So we read up and watched a video or two yesterday.

This morning we did a finger poke & bolus for breakfast then we were ready to give it a try.  My son was VERY nervous anticipating that it would hurt or be uncomfortable and I was super nervous for him knowing that if it did hurt or was uncomfortable it wouldn't change the fact that CGM use is better at helping manage diabetes.

I sat him in front of the TV and distracted him with a show he likes.  I took my time and prepped the site.  I re-read the instructions, with pictures, provided with the inserter then placed it on him.  I was very nervous to push the button but he didn't want a count down so I took a deep breath and pressed.

"Uh was that it?" my son asked.

I was so happy.  He said it didn't really feel like anything.  He said it felt "like a flutter".  Two hours of warm up later and we were on.  The monitor takes readings every few minutes and starts a little chart/graph so we can see if we are in range, low, or high.  We were in range and had an hour before lunch and so back to his own entertainments he went.

Now today, of all days, dearest hubby decided he would bring home donuts from the grocery store.  He figured our son could have one with his lunch cover.  Not plain donuts, or small donuts, but a super fluffy, frosting covered, sprinkled donut.  I looked it up as best I could and figured it was between 40-60 carbs depending on what site I looked at.  So we bolus for 40g plus lunch figuring a high blood sugar later was better than low.

Here's where the dexcom is going to help us manage things.

Before, I would've checked his BG at 2:15 (snack time at school but at home he doesn't really eat a snack at this time usually).  I then would've checked before dinner at 5ish.  I looked at his number at 2:15 and his BG was 119.  In range, but surprising because I figured I had not covered all of that massive donut.  Interesting but okay.  We refilled his water and chatted a bit then off to chores I went.

At 2:30 he came out with the sensor and said it alarmed and his BG was 182.  That is out of range but he had his last insulin at 11:00 so I figure his lunch wasn't fully out but the insulin from 3 hours previous had done all it could.  We double checked our CGM with a finger poke and it was high too.  I had him drink a glass of water and said we'd look in about fifteen minutes; if it was still high we'd do a correction.  So at 2:40 he was up to 256 and we corrected with insulin.  He stayed out of range for the next few hours.  His pre-dinner number was 290!!!

Normally I wouldn't have caught the high until the 5:00 dinner.  I wouldn't have given the correction at 2:40 and who knows how much higher he would have been by dinner.  I would've had to recheck his after dinner with a finger poke but because of the CGM we just checked every twenty minutes until it started to get back into range.  By 5:45 he was back in range and had finished eating.

No surprise what happened next.  At 7:30 he had another alarm but this time it was low and dropping rapidly.  We gave 15g of juice.  So NICE not to have to finger poke for that or again fifteen minutes later...checked the CGM we were back in range at 98 with a steady arrow.  Checked again fifteen minutes later still in range holding steady.

So what do I think.  I LOVE the dexcom already.  I HATE donuts.
(Okay fine, I like donuts but I think maybe they are not worth it.)

And the wait goes on...Continuous Glucose Monitor

Yes we're still waiting.  We've been waiting.  Sometimes patiently waiting and sometimes angrily waiting and sometimes frustratingly waiting.

Our insurance company covers pretty well for diabetes supplies once they decide to cover them.  They take their time deciding though.  We seem to need to do a lot of pushing and calling and submitting again and again the same things.

We were told in the hospital that we could submit for a CGM 30 days after diagnosis.  So we did that on Jan. 9th.  We waited a couple of weeks then called to check on the status.  Nope, we submitted our request incorrectly.  We contacted our endocrinologist and they said they'd get back on it.  More waiting.  Two more weeks and another call but nope nothing going on yet.

About three weeks ago I got a text from the medical supply company that my paperwork was in and they would be reaching out to me soon.  Hooray!  I actually started crying, at work, in front of my coworkers.  What a mess I've become.

So we wait again, for another two weeks.

Then I get a text message from my ex-husband letting me know that insurance informed him that they declined to cover the CGM because there was an error in paperwork.  The thing is...why was he getting information and I wasn't.  The kids are covered twice first by me and then by him.  We both have the same insurance provider.  His insurance is the secondary coverage.  So I call the insurance company again hoping that the secondary coverage wasn't going to be kicking in any help but that the primary coverage had approved it.  Nope.

It was declined because it came from the endocrinologist and not the pediatrician (the pediatrician is in network and the entire Children's Hospital and all their staff are out of network).  So then I ask why my ex husband received this information as the holder of the secondary insurance but I wasn't contacted.  So they checked "my" account and told me the phone number they had on record was his.  Ummmm.  We've been divorced for 9 years!  Last year I had the same insurance company for my kids and he was unemployed and had no insurance for the kids.  We have open enrollment every year in Nov. and I updated my information but stayed with the same company.  We did both go into the new school employee benefits network since I have always been a teacher and he has recently become a teacher.  So now I have someone researching my account to see how his information landed on my account - it wasn't just his phone number either, it was also his address and he has been receiving all of my mail - not just for the kids but also my medical information!  Of course all this is a different battle so...

So armed with my new information, that we need the pediatrician, I give his office a call and talk to a nurse.  I LOVE NURSES!  I have always loved nurses. Lots of relatives are nurses.  Nurses have always been kind and knowledgeable. My son's pediatrician is awesome but he wants my son to be seeing a specialist for his diabetes.  The nurse and I talk it through and although they NEVER do these types of requests they are going to figure it out and call me back.  They are going to contact his endo. and get all the information on what she is recommending and then they will submit.

I get a call from her the next morning that they have everything ready but they don't know where to send the request.  Hmmm I don't know.  So I call the insurance company.  I explain that we need a pre authorization and my pediatrician needs to know where to send the paperwork.  But they don't understand and ask a bunch of questions then finally decide what I need to do is go pick up the prescription from the Dr. and take it to a pharmacy 100 miles from where I live because that is the nearest affiliated pharmacy.  At this point I would've driven the 100 miles there and back but  I know that won't work so I tell them to put me up to a supervisor.  Supervisor thinks I should talk directly to the medical supply company but I explain to him that we already did that and there was no pre authorization on file with insurance so it got declined.  After talking to him for a long time he has me talk to someone else.  This went on for 3+ hours.  No one could just give me a fax # or agree that there was any such thing as pre authorization although I know there is for my insurance since I needed it recently for my older son.

At one point my insurance company said they knew who I needed to speak with, put me on hold, then when the line picked up I was talking to a representative from the medical supply company.  Unfortunately they couldn't do anything without the insurance company having the pre authorization.  So I had to call the insurance company back but not before I burst into tears at the poor medical supply company rep. ah Kristin, she was very sweet as I completely broke down and there was literally nothing she could do to help at all except listen.  I finally had to give up for the day.

This morning I called the pediatrician's office again and was surprised to get an update.  The medical supply company reached out to them and gave them a phone number and fax number for the pre-authorization department at my insurance company.  So they called in and spoke to multiple people and got a lot of "conflicting" information.  First they were told that my insurance wouldn't cover a CGM no matter what a physician recommended.  Then they talked to someone else who told them they couldn't make the request it would need to come from the Endocrinologist.  Then they were told by another person that it was fine that it came from the Endocrinologist but they always have to verify that the primary care physician agrees with the treatment and they'd called but found out my son doesn't have a diabetes diagnosis so the Dr. declined the order...more on this in a minute.  Finally they reached someone who said they would review the request and sometime in the next 2 weeks the authorization department would decide but if they did agree to cover it we should know our deductible applies (FINE).  To hedge all the options my son's pediatrician & amazing nurse and staff decided to do ALL THE THINGS.  They called, they faxed information in, they called the Dr. that had rescinded the order and explained the situation in case he got called again, they called our Endocrinologist and had her fax in another order as well.  WOW!  Fingers crossed.

So I called insurance again today to see if there is anything else I need to do, to make sure that Dr. that rescinded the order isn't listed anywhere on our file, and to make sure that there would be notes on our file that we were actively working together with our pediatrician and endocrinology team to get this device.   The representative I spoke with today was really helpful, she was thoughtful and tried really hard to address my concerns.

First she figured out that the Dr. that had been contacted and rescinded the order was the physician from the urgent care clinic that had diagnosed my son as having a sinus infection while he was really in diabetic ketoacidosis; we saw that Dr. in an urgent care clinic and within 12 hours my son was on a helicopter being transported to the children's hospital after we took him to our local hospital emergency room.  That same physician never called us back with the results of the bloodwork he had ordered on my son.  She assures me that she left very specific notes regarding this physician and made sure his name is NOT listed anywhere in our file except in that note.  He shouldn't be contacted again regarding my son.

She figured out how my ex husband's information was being updated into my account.  Again she left very specific notes in the account about the status of the children and their coverage as well as locking their address & phone number so they cannot be changed except by me.

Finally, she called the endocrinologist and pediatrician for me and made sure they were each resubmitting the request to the correct fax number for the authorization review department.

I want to believe that she did all these things and that early next week I will hear that we were approved and that our CGM is on its way - finally.  I want to believe but I just can't really.  I very badly want her to have come through and for things to work out.  But if not, I am ready to call again, spend hours on the phone, pester anyone and everyone, and keep going until we get the best possible care options for our son.

If you are out there, fighting this battle too, you may never see me, we may never speak, we may never meet, but I stand with you and I know you stand with me.  Keep going.  Insist on the best care for our children.

Still Waiting...CGM

We were eligible for a continuous glucose monitor 30 days post diagnosis...supposedly.  We took our data and learned our new skills and at our one month follow up appointment we talked to our team about getting a CGM.  They agreed that we were ready, our son was ready but we were two days shy of 30 so we left that visit with instructions for how to get "started" on the process of getting the monitor.

N was diagnosed in early December and tomorrow it will be March...we are still waiting.  No CGM yet.  Nope. Just waiting. And waiting. And waiting.

I know the CGM won't solve his diabetes but I believe it will improve the quality of care we are providing.  I believe we can keep him in range better with the information provided.  I also believe it will give us some peace of mind.  The CGM can alarm for us if he is out of range.  This would be a huge help, especially in the middle of the night.

N wants to go play with his friends in the neighborhood and right now we make them all stay near our house. We make sure he is well in range before he goes outside and we check him every two hours when he is playing outside with his friends.  He gets rather tired of us showing up too.  Especially when they are jumping on the trampoline and he has to stop to get his finger poked.

It would also help at school.  Right now he has his blood sugar checked at 7:15 in the morning.  He then checks it twice at school; before lunch and 30 minutes before he gets on the bus (allowing them time to treat a low and still get to go home).  You know when he doesn't check is blood sugar at school?  After PE or after recesses.  Not a huge deal but N is typically treating a low 1-2 times per week at school on PE days.  Our school nurse is fabulous and handles these with ease helping him to learn how to handle these himself and how to keep calm.  We are working together to adjust breakfast and lunch on PE days.  We've lowered his lunch insulin and increased his breakfast carbs but we haven't got it completely worked out yet.  If we were receiving the CGM data we would see how his body is reacting to the exercise and would be better equipped.  Maybe he needs a snack right before PE or right after...hard to know right now...not enough information.  We just know he is often low in the afternoon on PE days and sometimes he is low at lunch on PE days.

We're fortunate because N can identify when he feels low pretty consistently.  He is almost always the one who alerts us to his low.  It is extremely rare for us to do a scheduled BG and find it low.  We find it low because he comes to us and says he feels shaky and he thinks he is low.

We are scripted for a Dexcom 6 from our endocrinologist but our insurance company has us going through their preferred supply company rather than directly from Dexcom.  I got a text message from the medical supply company over a week ago saying they had our paperwork and would be calling us soon.  To me, soon should be within 2 days but to a big medical supply company I have no way of knowing what "soon" means.  I do know that I'm back to waiting.  Waiting for a call.  I assume it will be more waiting after that because then they will be shipping the monitor.  Hopefully we have it in the next couple of weeks. 

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😏

School Days & Weekends

We send our blood sugar numbers into a team about once a week.  Sometimes they ask us to make adjustments to our ratios, correction factor, or long acting insulin.  This is awesome and I am super thankful that we live in a time when I can send information in and have someone with expertise review it and make adjustments to our care of our T1D son. 

Here is where I have some strife though...weekend numbers are dramatically different than school day numbers.  There are so many reasons I believe this happens.  I'm never sure if I should send in weekend numbers or weekday numbers or try to send in all the numbers.  The team is usually looking for 3 days of numbers. 

During a school day, our son wakes at a specific time.  He has breakfast, usually cereal, and takes less than twenty minutes to eat it.  He rides a bus to school.  He has only twenty minutes to eat lunch at school so he asks for a simple lunch that he can eat quickly.  He has two recesses outside and twice a week he has a PE class.  He does a BG check at about 2:30 and has a snack as needed to stay in range.  His weekday numbers tend to stay between 75-110. 

On the weekends, I let him sleep in a bit (only an extra 30 minutes).  He prefers waffles and bacon on his days off and takes 30-40 minutes to eat since he is visiting and relaxed.  At lunch he again takes 30-40 minutes to eat and he typically eats 20-40 more carbs at this meal than what he eats in his school lunch.  Sometimes he is very active on the weekend and other times he is relaxing and watching TV or playing video games.  Snack & dinner are about the same on weekends and weekdays.  His weekend numbers tend to range from 100-160.

When we send in 3 days of weekday numbers we often get a response that we may need to lower doses.  When we send in weekend numbers we often get a response that we may need to increase doses.  Over the past four weeks we haven't made any changes because we go back and forth between sending in weekend & weekday numbers based on when the team requests the next set of numbers. 

We're still waiting for approval on a continuous glucose monitor and I'm hoping that changes how we are watching and adjusting for my son's best health.  Until then I will keep sending in my numbers and wondering if I'm missing a necessary change because we've had lot of 3 day weekends recently:)

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. 

Unexpected Good

My friend at work has a daughter with diabetes.  She was diagnosed a year and half before my son at about the same age he is now.  I wish my friend didn't have to be a T1D Mom and I wish her daughter didn't have T1D just like I wish my son and I weren't doing this.  But...

I try to find the good.  I try to celebrate small successes and appreciate what I have.  Where I live, how I've lived and live, the fortunate life I have, my family, my house, the comforts I have.  I try to find the good.  I think most people do.  I think we humans may be predisposed to both complain and make the most of.

I was reading other blogs and looking at recipes and finding resources when I came across a survey question.  I wish I could figure out where it was and direct others there but no matter.  The question was something to the effect of: since you now have a child with type 1 diabetes, have you found any unexpected good/positive?

YES, YES, YES

If you choose to look for the good you will find it.  Maybe you won't find it in every moment and maybe there will be vast amounts of time when it is too difficult to look for the good but ultimately I think it is there.

Unexpected good:

1. There are more kisses, hugs, and cuddles with my ten year old now.  He and I talked about this because he had almost "outgrown" most physical affection (yuck mom) but now that he has diabetes he feels like it is okay for him to accept and enjoy extra "love".  He said "other kids won't think its weird because I have to have shots and they will think I need hugs for that."  :)

2. We are appreciative of our family time and the simple acts of being a family.  This is probably related to the hospital visit and fear and will fade again over time but right now we are all feeling the joy of family (even my teenager).

3. I'm a terrible cook but my kids are trying to tell me something I did right at each meal.  I suspect hubby had a chat with them about it but I don't care, I'm happy to have any positive feedback.

4. I have given myself permission to leave more of my work at work and to focus my home time on being home.  I'm a teacher so bringing work home is pretty common but I am taking less home time for work right now and focusing more of my attention on being in the moments of each day including focusing on home while I am at home.

5.  When we opened up to friends and family about our son's new diagnosis we found out that we have lots of friends with type 1 diabetes.  Apparently it isn't something you brag about or talk much about unless you find out someone else can truly understand and then you are immediately bonded in a new way.

I'm hoping to come back to this post over time and add to this list but hubby asked if I would watch TV with him and so here I go to focus my time and attention on the family that wants to spend time with me right now.  Good.

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!