Sunday, March 22, 2020

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.

Wednesday, March 18, 2020

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.

Saturday, March 14, 2020

It's finally here! The Dexcom G6!

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

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

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

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

"Uh was that it?" my son asked.

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

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

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

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

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

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

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

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

Friday, March 6, 2020

And the wait goes on...Continuous Glucose Monitor

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

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

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

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

So we wait again, for another two weeks.

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

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

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

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

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

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

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

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

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

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

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

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