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. 

Insecure CGM

"I think it's just insecure mom."

This is what my son tells me as his dexcom asks for calibration, again.  What a crack-up he is.  He has the greatest attitude about all of this.  When we got our diagnosis in December we knew right away that we wanted to take advantage of the option to have a continuous glucose monitor but we had to wait 30 days.  It actually took quite a bit longer than that to get everything situated with our insurance company but thankfully we worked it all out.  

I'm frequently amazed at how quickly we humans can get accustomed to new situations.  We haven't even been handling type 1 diabetes for 6 months yet but it has fit itself into our routines and our lives and I have to make a conscious effort now to recall how things were before (most of the time).  Sometimes I do feel frustrated by the inconvenience of it all but then I remember that my child gets to live a full and productive life and that wasn't always the case for people with diabetes so I quite my whining.  

So we've been using the dexcom for several months now and are on our seventh session.  This time though our dexcom was struggling for some reason.  It started as soon as the session warm up ended and the alert went off asking for a calibration.  My son and I looked at each other in confusion.  We do sometimes calibrate it on the first day because we find it reads low for him and we don't like to treat a low when he is certain he isn't low.  So we shrugged and giggled a bit about how it was just anticipating what we were going to do anyway and we calibrated.  No big deal.  

Ten minutes later my son is back out with another calibration alert.  Hmmm. Okay, we calibrate again and the dex and finger stick are reading within 10 of each other so I put it out of my mind.  For about an hour and he's back out.  That first day I got so frustrated with it which is silly.  The G5 required calibration but we'd come into CGM with the G6 and have never known anything else.  It doesn't require a calibration unless symptoms aren't matching the reading but suddenly we're doing finger pokes all day which is what I wanted to avoid by getting a CGM.  I even looked for a way to turn off the calibration alert but nope, can't find it, have to ignore it or do the calibration.  I do NOT want to teach my son to ignore alerts so we calibrated over and over again.  The numbers were always pretty close; nothing of concern. 

The next day it asked for a couple of calibrations and I reached out to an online community regarding this.  Many other people said sometimes they get a faulty sensor or their dexcom doesn't read well when the child isn't drinking enough.  We haven't been on the sensor long enough to have any extra supplies.  As a matter of fact, they will be sending us our next 3 month supply when we are on our LAST DAY of my existing supply (and due to insurance I can't get this any faster?). So I didn't want to change the sensor early.  Finally by day four it had fallen into a pattern of wanting calibration once a day at around bedtime.  By day 7, as I was putting my son to bed only to make him get up and wash his hands and poke his finger, I said "sorry about this dexcom." 

My bright, intelligent, and funny 11-year-old responded "I think it is just insecure mom."  

I giggled and said "What do you mean?"

"You know.  Oh no, what if I'm not the right number? Maybe I better check? Fingers crossed.  Hopefully I'm good?  Am I, am I?  Okay, I'm good.  or am I?"

Funny kid.  Thankfully this sensor session ended and we put on a new one.  It has been three days and hasn't once asked for a calibration.

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)

Spring Break & Trying the Omnipod Sticker

Spring Break!

We are still home but this week is technically spring break!  I wish I could say I"m finally taking a break from online meetings and staring at a computer all day but our state just announced school closures will continue through the end of this school year.  I knew that was coming but it was heartbreaking to realize this school year will be distance all the way.

I am also working on my renewal for my National Boards.  This is a pretty in-depth profile of my professional growth from the past nine years and includes video taped lessons and reflections on my teaching practice.  The original timeline for completion was May so my plan was to video tape throughout March, then watch the video lessons, pick the best, and work on the reflection writing over spring break.  Fortunately I did begin video taping the second week in March but unfortunately I had at total of 3 days of video taping lessons before Covid-19 closed our campus.  Many of these lessons couldn't be used because I did not receive back permission slips to include all of my students in the submission and in a classroom students are often walking around in the background while you teach. After deleting all of those I had exactly three lessons left that met the time requirement.  Hmmm, wish me luck.

Omnipod Dash

So my T1D son is wearing an omnipod dash "sticker".  It gives us an idea of the adhesive, the weight and size of the pump, and how well he tolerates it's presence on his body for 3 days.  It isn't an active pump though so we get none of the benefits and we didn't get the whole experience.  This pump is tubeless and waterproof which are both strong pros for my son.  He is worried that his cat will chew on a tube in the middle of the night because Alfie currently chews up any earbuds he can find.  I like that they are in clinical trials for a new system that would work with his dexcom on a loop system but we can't put our faith in that  happening soon.  We have to choose from what we have in front of us. Sounds like this system would require him to carry his phone for the dexcom and the separate PDM.  We'd be able to suspend his basal insulin if needed to prevent hypoglycemia. He would be spared the 5 daily injections he gets currently.  That is a lot of positive.

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.