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.

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!

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. 

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.