1:26 PM

This little man

❤️!! He loves #football

🏈 so much & he scored his first #touchdown today. He also played #defense like a boss! I'm so proud of him. He used to have terrible #anxiety about his #diabetes and playing #sports. He's come SO FAR! His teammates and his coach are all amazing so #typeonediabetes has fallen into the background for him while he plays! He truly is #SuperNate!

#BeStillMyHeart #BoyMomLife #BoyMomJoy #MomMomMommyMom #DMom #Cowboys #FlagFootball @ North Lakes Soccer Fields

Dexcom Denied

8:00 PM

#Insurance #denied again. We ended up paying cash because #Dexcom is a #MedicalNecessity. It has literally saved #SuperNate's life and the peace of mind is priceless. This small little transmitter (x2) is $600. It blows my mind that #Medicaid #StarKids #MDCPTexas doesn't think Nate's life is worth it. I do. ❤️

The 'What If' Game

5:51 PM

Posted from Facebook 1/20/17

After almost 8 years with Type One Diabetes we have learned to roll with most anything it throws our way. Some days are easier than others and some days are much harder.

Last night while Nate slept his blood sugar dropped unexpectedly. Those little red dots are sever hypoglycemia that he slept through and we almost missed. By the time his Continuous Glucose Monitor alarmed, his blood sugar was 47. I fear it had actually gone much lower but by the time we got to him his body had already started fighting the hypo, thankfully.

His liver dumped glucose (its much more complicated - won't go into it all here) which saved his life. We gave him 10g of carbohydrates which would normally raise his blood sugar by about 100 but his blood sugar soared over 500 and stayed there most of the night.

It was a long night filled with what-ifs, what could have beens, and FUD. I share this not looking
for sympathy or praises but instead to educate.

Diabetes is not a joke, it's not a punchline, and it's not to be taken lightly.

I don't exaggerate when I write this ---

We could have lost him last night. While he slept. In the next room.

I can't even think about it without tears stinging my eyes and rolling down my cheeks --- it makes my body physically ache to go over what could have happened. And I went over it in my head all night long.

There's nothing funny about that.

And I'm not alone. There were moms and dads around the world carefully watching over their children last night. Forcing them to eat in their sleep to keep them alive, carefully calculating insulin doses to lower dangerously high blood sugars, and some just watching the rise and fall of their children's chest because sometimes the fear is so overwhelming.

There were adults doing it all too. These babies grow up and diabetes doesn't go away! Wives checking husbands, husbands battling with hypoglycemic wives ...

❤️

It's a tough disease and the people that live with it are amongst the strongest people I know! They are warriors.

--- Thankfully smooching Nate's face off this morning while he rolls his eyes, grins his silly grin, and allows me to love on him all while he has no idea what happened last night.

❤️

#T1DLooksLikeMe #SuperNate

Dexcom Disappointment

8:19 AM

Nate began Dexcoming in 2010 at the age of 2 years old - It wasn't FDA approved for children yet but I was instantly in love.

You can read about Nate's Dexcom trial here or you can click the Dexcom tab at the top for more information. It was nice that Nate was so young when we began our Dexcom journey because he couldn't tell me NO at the time. It quickly became just another poke in his world every 7 days. We were very fortunate that at the time our insurance covered (we were on COBRA at the time) the Dexcom 7 and the sensors. Unfortunately, once we lost COBRA we were on our own for the cost of the sensors which were about $350 per month.

We have always been blessed by the DOC (Diabetes Online Community) -- we have been gifted sensors and traded other diabetes supplies for the sensors also. Shhh . . . don't tell anyone but D Moms are the BEST and we all help each other out with supplies!! We have never gone without sensors!!

In 2012 Dexcom released the latest and greatest Dexcom product, the G4 and I could not wait to get my hands on that awesome little thing.

Unfortunately, Nate is on Medicaid and although we are very fortunate to have it, sadly it does not cover a CGM for Nate. They think it is not a medical necessity -- I disagree completely but that's another post for another time! I won't lie -- I was a little jealous seeing all of my friends in the DOC posting pictures of their kiddos with the new technology! Suddenly, the old Dexcom 7 that I had been on love with for the last few years seemed like an antique and quickly lost its luster. (Now, how I miss its durability and super strong charging port!)

Fast forward to summer of 2013 --- Nate's dad called and told me he had a friend that wanted to GIVE us a G4. Say what?? I think I cried. --- I probably cried . . . I always cry.

We received the new system in August of 2013 just in time for Nate to start kindergarten. I was overcome with appreciation and happiness! The gentleman that gave it to us probably has NO idea just how much it meant to me. It was such a relief to be able to keep Nate safe while attending school!

Then fast forward again to December of 2013 and suddenly I was in moderate panic mode! Our receiver stopped working! The little port that you plug the charger into had broken loose and was lodged inside the receiver. We had no idea what had happened! I called his teacher and no one had dropped it --- nothing --- it just broke! It was crazy! I was not in full blown panic mode because I figured I would just call Dexcom and they would replace it with the warranty. WOW! WRONG! Because we did not purchase the Dexcom system they would not honor the warranty. Full BLOWN panic mode!

Nate's dad called his friend that purchased it and after a lot of back and forth between all of them Dexcom decided to replace it. In the meantime an amazing D mom had sent me their old receiver since theirs had just been replaced by insurance. WOW!

Fast forward again and the same thing happens. For no reason the port just breaks. Seriously? Another amazing D Moms sends us their spare receiver. I have the most amazing friends --- I am very much aware of this!

Repeat that song and dance 2 more times. We have had 4 receivers break for NO REASON. I know this sounds highly suspect but it is so true. Nate rarely wears the actual receiver otherwise I would maybe understand it breaking because he IS a rough and tumble little boy!! But at school his teachers wear it on a lanyard around their necks which is where I wear it also when he is with me and when at home the G4 picks him up all over the house so we just leave it on the kitchen counter. SO WTH DEXCOM??

Here are a few posts I found in a FB group from others experiencing the same problem:

* Grrr the phone keeps saying cgm connection error. Fearing a broken charge port I plugged Dex into the computer and it showed the charging icon, so thankfully not that. Wish my 14 year old was home!

* Dead Dexcom, 2 days after warranty expired. Messed up the port. There's a lot of traffic on this site - so can someone link me to the links for where to get the case info and which cable to buy? Going to try again. We're going to try and get a second receiver, but not sure how much they cost. Has anyone had luck with this? We want my daughter to still have a Dexie in her pouch that she can check when she wants. The Nightscout rig would be in her bag.

* I'm curious has anyone has had the fragile charging port on the Dex break? Our was pushed inwards from an upside down cable. Already received a replacement but was wondering if it's something I could fix so that we'll have two Dex's? And if so how do I fix it?

* I contacted the FDA to see where to send complaints on Broken USBports. FYI
Thank you for contacting the Division of Industry and Consumer Education (DICE) at FDA's Center for Devices and Radiological Health (CDRH) DICE@fda.hhs.gov e-mail account.
Please send your complaints to ocmedicaldeviceco@fda.hhs.gov
Sincerely,
VJ Huang
Division of Industry and Consumer Education (formerly DSMICA)
Office of Communication and Education
Center for Devices and Radiological Health
U.S. Food and Drug Administration

* Think we may have the dreaded broken Dex port. Can't get it to connect. Won't show it is charging, even if I plug it into the Dex charger. Hoping someone is going to tell me I just need to restart something or do something simple to make it work again.

This post was mine in a FB group (Dexcom related):

I did a search for "Broken Port" in this group and A LOT of posts came up. I would like to get a rough number just from this group of how many people have had a broken receiver port?!?!
We have had 2 --- both non rig related. We lost one in December for no apparent reason (just normal charging) and last night when I pulled one gently off the charger I realized that it was loose and now will no longer charge. We were 3 days outside of the warranty in December but they ended up replacing it for free but now we are WAY outside of warranty.

I love the product but am disappointed with how poorly the G4 is made.
So, could you post a quick comment if your Dexcom port has broken at any point Nightscout related or not. Thanks!

And here are a few of the responses:

Ours broke under warranty, not Nightscout related

Ours broke also only like 3 months after we got it! They replaced it but only after asking me a trillion questions to make sure it wasn't my fault first!

Broke under warranty. Using NS; however, it was just a simple charge one minute, gone the next. I can't blame it on anything other than poor port construction.

Yes. 20 days outside of warranty. Not Nightscout related.

Lost one last fall to normal wear and tear. (Also lost the circular button on one to normal wear.) The port on my rig receiver is looking wobbly, but it's a 2 year old receiver. The 3D printed case is helping.

Is there a way to complain to FDA or somewhere see if they would extend the warranty. It is a medical device and it should hold up beyond a year. I have cell phones that have never broken for 2 yrs or more.

Broke under warranty- we do not use the nightscout yet-

Yep. Broke under warranty. Non rig related

We've had 3 break. Only one was while using nightscout and only 2 were under warranty. I agree, wish it was better made for the price and the fact that it is used all day everyday!

Broken! Port collapsed while I was inserting a cable for NightScout. Seems to me the port shouldn't collapse inward.

Had one port break under warranty about 9 months ago - so totally pre-rig days.

1 broken port, before night scout

1 broken port here.

1 broken port - Nightscout related

1 broken port, not the Dexcom used with the nightscout rig.

I've had a port break and fall into the body of the receiver. Couldn't charge it and called Dexcom CS they replaced it without issue.

So, I guess it is nice to know we are not alone BUT REALLY, DEXCOM? This is NOT an inexpensive piece of medical equipment. In fact, it is really a VERY expensive piece of medical equipment that people rely on daily.

In one FB group a few people tried to repair the receiver so of course, Ian gave it a shot on 2 of them but had no luck!!

There were pictures along with the post but I do not want to violate that person's privacy -- here are the directions:

"If ever you've broken a USB port in a Dexcom Receiver - and if you haven't yet, you will - here is how to take one apart with a dremel and a makeshift router table. A new 50 cent USB micro female connector, some careful soldering, and you're on your way again."

Here are some of the pics of G4 that he posted and some pictures of Ian trying the repair:

I would like to point out that none of the broken ports were Nightscout related and after we lost the last receiver and were down to 1 receiver I stopped using Nightscout for fear that we would break our last one. That was a good thought but unfortunately it broke anyway. #LAME

The last one broke last Friday night and again I was in full panic mode. Those that don't live with T1 cannot possibly understand how important Nate's CGM is to me. I couldn't sleep - I was so upset so I decided to start searching for affordable alternatives (because sadly buying one new is NOT in my budget). I found one for sale online for $200 (in Hong Kong - #weird) so I texted Nate's dad and asked if he would split the cost with me. He didn't respond right away but when I woke up for the 3AM check I noticed he had texted me back during the night and reminded me that he still had the one that Dexcom had replaced last December! OMG! Happy tears again!!! I totally forgot he had that one!! So now we have a brand new one but it has no warranty.

So, for real we are now on our last receiver and I am going to continue the uphill battle of fighting Medicaid for them to cover the Dexcom G4 and the sensors! In the mean time I am terrified of charging this receiver for fear the port will break. And honestly, as a mom with a son with T1 and a daughter with Crohn's disease it's not like I need one more damn thing to worry about!!

I sent the last broken receiver back to Dexcom yesterday with a letter. I am confident that they won't replace it but I am asking them to at least look at the issue and if nothing else use it to help improve the product!

Overcoming Anxiety #SuperNate

Dexcom Denied

Friday Night Fun with Diabetes and Crohns

The 'What If' Game

Dexcom Disappointment

Just a Mom

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