Can't Win for Losing

 So my son has had his insulin pump for over five months now.  I keep waiting for it to get easier but it really doesn't seem to get easier.  He has his CGM and his insulin pump but they aren't a closed loop so I'm acting as the moderator between them. I guess I thought it would be easier by now.  I thought that once he was on his insulin pump and we got things dialed in that it would be better control than multiple daily injections.  Some days it goes great and other days, not so much.

We've been in a "not so much" slump for a couple weeks now.  My son is almost twelve and he is definitely growing right now.  His favorite shirts are looking a bit small and clothes that were just a bit too big are now fitting him fine.  This is good and exciting and exactly how it should be.  It also seems to be affecting how well the insulin pump is working for him, or not working for him.

So we'd spent about a month with his BG in range about 80% of the time.  That is about the same as we were getting on the multiple daily injections but his quality of life was dramatically improved with the pump.  He could go about his day and I could give correction insulin or cover for an upcoming meal without giving him a shot and he much preferred that.  I was much more likely to give extra insulin as needed too.  His pump lets him have different basal rates throughout the day and we had spent a lot of time adjusting these to be just right.  We never really had a pretty straight line like other people seem to post online.  I know, I know, people post their best moments and show you their best days but I had hoped.  We'd have some portions of the day with good control but each meal still seemed to cause a high for over an hour and sometimes we'd have a stubborn low for no predictable reason.  

For the past several weeks though things have been wonky, wonky, wonky. It is currently 10:20 pm as I'm writing this and I'm up because his BG is at 282.  He ate dinner at 5 pm and his BG was a nice little hill then on the lower side of in-range at 90 for several hours.  Then, an hour before bed and with no additional food, his BG started rising and just kept rising.  I gave 2 units of insulin and waited 30 minutes but the BG kept rising and was so far above range that the insulin on board wasn't going to bring him back under 200 so I gave 2 more units and watched that BG just keep rising.  When I went to check if he was sleeping he said "this pod isn't working, I'm too hot, I just want to get some sleep." So we changed the pod, early. I also gave an injection of 3.5 units to try to get him back into a range where he can sleep.  Now I'm just waiting for something to take affect. That was only fifteen minutes ago but I feel like I've been awake for hours.

His basal insulin rates haven't been keeping a line lately so we've been adjusting them.  This is a slow process.  You watch the data, make smart changes, watch the data some more and then when you think you have it right, your son has to do a fast for several hours so you can see if it is correct.  A correct basal will keep within 20 BG for the time without food so you watch for that fairly even line.  If you get it, GREAT, you move on to the next time of day and do the whole process some more.  If you don't get it, BOO, you have to keep working on it.  We've now increased my son's basal insulin from about 12 units per 24 hours to about 15 units per 24 hours and things are still not right.  A basal rate will seem right for two days and then on the third day he either rises or descends for that period.  

Admittedly, we've already determined that his insulin pods don't work nearly as well on day 3 most of the time and we've gone so far as to change our prescription so that we can change them every 2 days instead.  We haven't fully committed to this and try to make the pod last three days.  1 in 3 pods works fine on day three for him so it still seems worth it to try. Unfortunately it feels like we are watching and tinkering and giving correction insulin and just thinking about T1D all day every day.  Okay, okay, it is just me who is thinking about it all day.  My son is living his life. My partner is living his life.  I'm living as both a human and a pancreas and I'm feeling a bit of fatigue from the situation.  This fatigue I get comes and goes with this T1D. Sometimes I feel like I've got things pretty well in hand and even though it is a lot of mental energy, I feel okay about my role.  Other days I just want to throw in the towel.  Say "eat whatever you want" and ignore the incessant beeping and alarms from the Dexcom. But I don't and I won't and I can't.  Someday this will all be his responsibility. Someday I'll lay awake and night and wonder if he is doing okay, if he's low, if he's high, if he's eating right. So for now, I put on a good face and make the best decisions I can and try to model for him how to stay calm and carry on. 

Well BG is down to 279...not much lower than ten minutes ago...maybe another fifteen minutes.

400 and rising!

 We had our first challenge with our Omnipod Dash this evening.  It was a series of unfortunate events or poor planning or I'm too tired and not thinking straight since I'm waking three times a night to input our son's BG into our new pump...I don't know.

Our son's Dexcom and pod both expired today right around 4 pm.  I knew it was coming because I write it on our calendar since my son is not awesome about telling me when his devices give him alerts.  This also coincides with the time of afternoon that I typically cook dinner.  It was also a time when hubby wasn't home even though with coronavirus he has been working from home for months. I thought I had it all under control and then the universe decided to remind me that nothing is truly in my control.

I lost track of time and missed the expiration of the Dexcom so I had no readings for 30 minutes when I got the alert.  We changed the Dexcom.  We feel like old pros at this by now.  Remove the old, scrub up, wait about ten minutes, pick a new site, disinfect, turn on an amusing youtube video to distract son, press button and move on with the day.  Then I used a finger stick and took a BG, entered it into the pod and gave the bolus for dinner.  Off I went to the kitchen. 

Started making dinner when I remembered I had bolused for Nic's dinner.  With injections we usually waited 30 minutes between giving his bolus and giving his meal but on the dash we give food 15 minutes after a bolus because if we wait he drops below 70 (even from 250 sometimes).  Oops, poor planning or I am unable to think clearly.  I scrapped the idea of him waiting for the main dinner and made an alternate with the same carb count that would be done in time.  I gave him food and deactivated his pod.  Took off the pod (I have since heard from many expert parents that I could/should leave the pod on after deactivating it). I set up the new pod, we picked a site, scrubbed it with alcohol swab, turned on a youtube video, and did pressed start.  Went fine even though it was on his stomach.  

Son is very worried about his stomach.  First he is ticklish there and hates for anyone to touch his stomach and second he has this unfounded fear that something will pierce his internal organs.  No explaining or showing how his body is actually set up have really helped yet.  

Checked the site was set up and pressed go. Set an alarm so I'd remember to check his site after one hour and BG two hours after dinner. Checked the site at one hour and looked fine.  Went about finishing eating my dinner that I'd managed to get for the rest of us, left hubby's in the oven.  Then the alarm goes off on my phone that Dexcom is high, over 300 well it is about 90 minutes post dinner so not shocking.  Half hour later I get the alarm for no more data.  I go to investigate and find the BG on son's phone is 390. Ugh, make him do a finger poke and get 422.  Made him do it two more times while the dexcom changes to HIGH. 

Hubby arrives home so I alert him to the problems as he is busy complaining that he had to come home early because he has no data on the dexcom after getting a really high reading.  Sharing had stopped working. He went off to check the Dexcom servers for known issues and I followed the handout from our pump class.  I gave a correction - this was difficult because his pod thought he had 2 units of insulin on board and wanted to give only 2 units for correction but to correct completely we should give about 5 units.  Split the difference and gave 3.5 and set an alarm for an hour. Son's Dexcom still read HIGH at the 400 mark. My phone isn't receiving sharing data.  

I found hubby growling at the dexcom server error site.  No sharing right now.  At least we had the BG on son's phone.  Being new to insulin pumps we decided to call the on-call nurse just to walk through steps if the BG hadn't dropped within the hour.  Advised to give up on this pod and give an insulin injection then decide on a new pod or a long-acting insulin and return to injections until a more wakeful time.  We were mentally prepared when we went in to check at the hour mark, Dexcom is still reading HIGH so we did a finger stick and got 440.  

We did a ketone check then deactivated the pod and gave 6 units of insulin via injection.  It was about an hour until son's bedtime but I figure I'm not going to be sleeping for the night anyway and he'd rather have the pump than injections so we picked a new site, back this time, carefully followed our steps, and did a site change. Went as expected.  Of course the change earlier in the day went as expected too.  Set a timer for an hour. 

While waiting we called omnipod customer service.  Our rep told us to expect to have some pods that don't work as expected for a variety of reasons and to always call them in.  We do the same when a Dexcom sensor doesn't last the full ten days or has any other failure so not a big deal.  Remind me to tell you later how a customer service rep can make you feel better or make you feel worse and maybe they don't even realize the power they wield with just the tone of their voice. 

An hour later his BG is dropping in the low 300s and we felt relieved.  HA! Relieved that he was in the 300s.  Diabetes management is a fickle fiend. Checked for ketones, set another alarm, kissed son goodnight.  Here I am typing after that next check.  We're under 200 now but I have no way of knowing if this pod is working correctly or not right now because he has the active insulin from the injection.  Ideally he is about to level out and his pod will run his basal rate and he will have a steady line all night.  Alternately he could continue to drop because he had insulin that didn't absorb well but suddenly starts to take affect or this pod isn't working and his BG will start to climb because there is no basal and no long acting.  Fingers crossed because we have had enough for tonight.  

Alarm is set for an hour from now.  That will be three hours from the injection.  Another alarm will be set for about an hour after that.  If things are holding steady between those two checks then I can sleep for three hours before checking again.  I have to get up and check though because I have no sharing data and his phone has to stay near him to read his dexcom.  

So any unexpected good in this situation?  My sister takes all my phone calls and listens to me obsess on blood sugar and never complains.  Hubby makes sure there is a bottle of wine in our fridge for when I need to settle a bit and makes the phone calls because I just can't with people sometimes. I can post my stressful few hours on the facebook page for other parents in the same situation and they've all been there and done that and they provide a calming reassurance and make sure no one ever feels alone in all this. My friend sees that post and sends me funny text messages to make sure I know I'm not alone.  There is a "community" to being in the type 1 diabetes care club. Dearest son falls asleep never worrying that his life is may be on the line. Hey, and Dexcom sharing just showed back up.  

I am thankful we live now and not 100 years ago or even ten years ago. The continuous glucose monitor is amazing even though it doesn't work 100% of the time.  The insulin pump is amazing even though we don't have it working correctly and it also won't work 100% of the time.  I also believe that both these companies take their product seriously and want to ensure that any failures are remediated over time so they make a more reliable product with every update. All it takes is a phone call to get an item replaced that didn't work as expected and it shows up at our house within a week. Dexcom has even overnighted replacements to me when needed.  

Not going to make it to the next hour mark.  Been watching the BG drop by ten every five minutes for the last twenty minutes I've been typing this post.  In five minutes I'll have to wake son up and give him a juice box. I might be able to wait twenty minutes for that to make a difference or he might end up drinking a couple of juice boxes.  Our record is four juice boxes and four glucose tabs at 2 am to bring his BG to 108 from a scary LOW on the dexcom that stubbornly held on for over an hour.  I'm really not in ideal shape for breaking records tonight. 

Oh the Woes

So yesterday our dexcom stopped providing information for almost an hour.  We hung in there and hoped for the best but it happened again in the afternoon and right around dinner time.  Today we lost signal for over an hour and reached out to dexcom.  They were GREAT! but I'm still tired and frustrated.

A while back I wrote about how frustrating it is to have exactly 90 days of supplies to last 3 months with no backups or spares at the end of that term.  We did get our next 90 day supply yesterday so we currently have 90 days of sensors and one transmitter that should last 90 days. 

When I talked to dexcom today they wondered why our transmitter hadn't warned us that we wouldn't have enough battery because the battery expires at 90 days but our sensor session wasn't due to expire until June 12.  So our transmitter needs replacing today (even though technically it should last until tomorrow I was told) but we only had 9 sensors each lasting 10 days originally so why would the sensor be expiring before we were finished with our last sensor?  I don't know and he couldn't answer it either.  He wondered if maybe I hadn't put a sensor on one day?  No I definitely have put the sensor on each time it was due although we did move it from our initial morning start to the afternoon between sessions once.  

No worries, they are sending us a replacement sensor because we need to end our session early and start a new session with a new transmitter.  I wonder if anyone else would see the problem here.  My transmitter is now going into use two days before it was meant to so we will likely run out of transmitter before our next 90 day supply shows up.  I know this is a minor issue and I should be grateful that we have this great technology and I don't have to poke N's finger 5-8 times per day but I have had to poke it several times yesterday and several times today while we are dealing with all this and near the end of our 90 days our transmitter will run out of battery and this time I won't have another available because they don't ship them a day before the 90 day mark...ugh!

Of course, today is also a day that for some unknown reason, N is running with higher than average blood sugars.  He has been over 200 every time we've checked and each time we give a correction but it doesn't seem to be doing any good at all!  My new community of experts all reassure me that this kind of thing happens.  It could be something he ate, or stress, or growth spurt, or not enough liquids, or a full moon but it is not because I am doing anything wrong.  

That is something I heard myself telling hubby just a few minutes ago when he got home and wondered why we've been high all day and last night and why he keeps getting "no data" alerts.  We're fine, we're good, we've got this under control as much as we are able to have it under control.  I'm tired, I was awake last night watching the blood sugar rise and rise and unable to make a correction because I didn't want to risk stacking insulin.  This is still better than five months ago.  I'm just saying it is a lot and I've only been doing it for six months.  Other people have been doing this for years or their whole lives and without all this fabulous technology.  

That technology sure has it's advantages and some disadvantages.  I can't believe I'm thinking this but I guess I should go ahead and call about the insulin pump.  I mean, I've already been on the phone with medical things for over an hour today, might as well spend another hour or so to get told that we aren't getting an insulin pump yet.  Doesn't hurt to ask though:)

In the nick of time

So our insurance has a specific company we can order our Dexcom CGM supplies from.  Even though these supplies are available at local pharmacies, I have to order them from a healthcare supply company but I can get, according to insurance, 3-months of supplies at once.  

Sounds good right?

Hmmm.  One Dexcom sensor lasts 10 days so for 3 months I get 9 sensors.  90 days of supplies for three months but some months have 31 days in them.  I cannot order new supplies until 12 weeks after my previous order.  I tried to order earlier online but the shipping date was for exactly 12 weeks from the last order.  I called the company this week just to make sure there were no other options and was told it was out of their hands, nothing they could do.  It isn't a large problem but it is an additional stress and we have plenty of stress, full up of stress, no thanks I don't need anymore stress.

So on the day they will send our next shipment we will have 7 days left of our current supply and they say it takes 4-5 days once they are shipped.  So if everything works out we will get the new sensors the day before we need one. 

I asked, not really expecting a satisfying answer, what happens if this sensor fails, or the adhesive wears off and it gets too loose, or the shipment is delayed?  The answer I got was "just give us a call and we'll make sure to ship you a sensor."  Um, you are already shipping sensors and they may not arrive in time but your solution is to ship me one?  I'm tired already of this and I've only been doing it for a week shy of 6 months. 

I'm a member of a type-1-diabetes facebook group in my general region (within 4 hours of my location) so I asked them about it.  I got several "groups" of answers.  

1. You just have to deal with it, work within the system, you can always go back to poking his finger 5-8 times a day and waking up in the middle of the night to check blood glucose levels for the few days while you wait for your shipment to arrive.  It only happens like this every three months. 

2. Pay for a box of sensors out of your own pocket so you have a little leeway. A box of sensors without insurance is over $350 from what I could find but sometimes costco has them on sale in their pharmacy for less a few people told me.

3. Just don't use a sensor for 5-10 days this time around but order on time and you'll be ahead for a while but, just so you know, you will eventually use that time up depending on how many days are in the month and where the weekend falls on your shipping date so you'll have to do this at least once a year.

4. Switch insurance companies.

I appreciate this group, I really do but these are four variations of bend over. That sucks. 

This group is full of amazing people though.  They never post negatively towards others in their shoes.  They never say "you are not entitled to your feelings on this" but they also don't let you wallow in self pity.  They try to lift you up and cheer you on and remind you that you've got this because you are the only one who can do it.  

Many members of this group, who I've never met, reached out in private messages to me.  They offered to loan me a sensor of theirs and trusted me to replace it when my shipment arrived.  They offered to deliver it to my house in the middle of the night if I needed; some of these people were over a two hour drive away. They've been where I stand and they know how it feels to tell your child that we are back on finger pokes for no reason other than that we can't have a sensor a few days before we will need it because insurance thinks we can't be trusted with it.  I guess they are worried we may overdose.  

I'm thankful we have the options we do but frustrated with the hoop jumping.  I will likely look into a new insurance option next fall when our open enrollment comes around and if we switch it will start in January so at least another six months.  It will likely just be a new set of issues though that I will have to learn to navigate.  When to call, who to ask for, how to get things done.  I am super fortunate that I have access to the types of health supplies I do have access to for my son but disillusioned a bit by the process.

So I'll just keep up the fight and know that others are out there making the same phone calls and feeling the same disappointments; connecting themselves with some people online and being thankful that other's hearts and trust is so much greater than could be imagined. It does feel strange to me how one thing can leave me so full of hope and grumpy sorrow at the same time.

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.

Getting Used to CGM

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

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

Things we like:

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

Things we aren't loving:

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

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

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

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

It's finally here! The Dexcom G6!

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

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

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

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

"Uh was that it?" my son asked.

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

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

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

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

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

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

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

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

And the wait goes on...Continuous Glucose Monitor

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

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

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

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

So we wait again, for another two weeks.

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

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

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

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

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

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

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

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

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

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

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

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

Still Waiting...CGM

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

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

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

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

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

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

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