And waiting and waiting and waiting

Insulin Pump 

I really wanted my next entry to be about getting our son started on an insulin pump but NOPE!  We are still waiting.  Insurance would've covered our insulin pump at 6 months post diagnosis which was June 9th but it is now Oct 17th and we have yet to start. We actually have the pump in our possession now which is a big jump from where we were in August when I last posted but it might as well be a paperweight.

We did our pump assessment class through "independent study" and two weeks ago we took the 2nd class which was via zoom.  First we received an email with handouts to read, which we read.  Then we logged into our meeting on our assigned day/time and waited for over twenty minutes; technical difficulties. When we did get into the meeting our trainer read all the handouts to us from a powerpoint and then we were told our pump orders would be sent to our pump rep after the class and we should expect our final "pump start" class to be scheduled by our rep.  

Two weeks and counting and we continue to wait.  I've reached out to children's again and been told that they are a bit behind but they would try to do it that day...that was last week.  There isn't anything to be done either which is the most frustrating part.  I don't want to be the parent that gets a reputation for being mean or aggressive but I FEEL LIKE getting mean and aggressive.

School & Coronavirus

So we've been back to school in all it's remote/distance weird glory.  We'd hoped to start our son on his pump at the beginning of the summer to alleviate the added stress the beginning of a school year can be for a family with two teachers as parents. All four of us "go" to school.  Not this year though.  No insulin pump really prevented us from feeling our son could be on campus when it opens; his school is fully remote now anyway but we signed him up for 100% virtual for the whole year.  Our older son is a Senior this year and he chose 100% virtual as well.  I'm back to campus full time with K-2 students with exceptional needs and my 3-5 graders will be back in a week.  Things seem to be going well so far but some students have arrived with fevers and the "social distancing and health" measures that are being promised aren't being enforced with fidelity.  I anticipate illnesses will be spreading in our building this winter. 

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. 

And we're waiting, and we're waiting, and we're waiting

No news on the insulin pump.  I'm bummed.  We heard from the omnipod rep that our insurance is back to approving these prescriptions and she had us contact the pharmacy that we'll need to use to ship supplies to us.  She texted the other day and asked if we have received any supplies and I got my hopes up.  I'd messaged with her at the beginning of the month and she'd told me she had checked our paperwork at Children's and that we were ready for when the update came but...nope.  According to our health insurance there has been no prescription for the insulin pump pdm, pods, or a change in insulin order.  

Ugh!

I'm not surprised but I'm not happy.  I wanted to believe the medical team we met via phone three months ago who said we'd be fine to start on insulin pump therapy but would likely need to take a zoom pump therapy assessment session (they didn't have them yet but they were sure they would be starting them soon since Covid19 had suspended a lot of in-person care).  I wanted to believe the rep from Omnipod that the paperwork was done and we were just waiting for an update to the omnipod.  I wanted to believe just yesterday when I got that text that we should've started receiving supplies by now.  Wanting something is just not enough.  I emailed our endocrinologist and explained all the research and reading we've done and how ready we believe we are.  I texted the rep back and said we've spoken to insurance and the insurance approved pharmacy for shipping.  I, in fact, did talk to several people because I've already found you have to get transferred through several people before you get someone who knows anything about what you are asking about.  

I'm not 100% sure where our hang up is or what I can possibly do to expedite things.  We want insulin pump therapy for our son, he wants it too, we researched and reviewed and tested and chose a pump, we've spoken repeatedly with the insulin pump company, we've tried expressing our desire to our medical team and we've done a lot of WAITING!  

We have about five weeks before we all start back to whatever crazy shenanigans will be our new school year.  Both hubby and I are teachers and both kids are still school-aged.  None of us want to do the thrown-together-emergency-work/teach/learn-from-home again.  Only five weeks and our district hasn't announced exactly how things will be worked out but they have announced some "options".  I do not want to start figuring out a new piece of medical equipment in the midst of all that but I'll do it for N because I believe it is best for his health.  It's just, it would be easier if we could do it now before the **it-storm starts.

I appreciate that we have these great advancements in treatment options for my son.  I'm thankful that he is living day to day pretty much the same as if he didn't have a chronic health condition.  I'm NOT living the same.  I'm harboring my worry and my concern and my advocacy and my frustration and my impatience.  On a positive note, I phoned a friend about my frustrations and she is wonderful.  She told me she reads this blog sometimes though so now I feel weird writing about her.  She's currently waiting and working to get her daughter a G6 so she gets it.  She is jumping all the hoops but the hoops keep moving and so many of the ones you jump don't seem to move you forward or any closer to your goal at all.  What a messed up system.  I'm going to pour myself a glass of wine and I'll raise it to my fellow T1D mom's tonight.  Keep jumping those hoops ladies!

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.

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. 

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.