I May Owe Him My Daughter’s Life

As a parent of a child (ok multiple children) with diabetes there are times when I have missed small hour alarms and slept through the night after some major correction bolus at bedtime only to wake in a startled panic holding my breath until I see my child breathing the next morning.

I haven’t ever met a parent of a child with diabetes that hasn’t experienced the above scenario.

Thankfully ‘dead in bed’ is not as common as we train ourselves to believe. Fear is insidious. In the early years after diagnosis we micromanage as much as we can to keep our kids safe. It is normal for us to do so. When my kids were younger I wouldn’t tell them the hours of sleep I missed to keep them safe. I still don’t tell them. Once my youngest overheard me talking about how tired I was after getting up or staying up (I can’t remember which, but I think I wrote about it a few years ago). My poor little man heard me say I was exhausted because of misbehaving diabetes and it broke his wee little heart. Then my heart broke into a bazillion little pieces.

Enter Dexcom. Even the first Dexcom CGMs were the bomb. Dexcom made my kids safer. Granted the early devices didn’t connect with bluetooth on their phones and they couldn’t share their numbers with me but it was a start. Dexcom is all about innovation and improving the lives of people and children with diabetes and by default improving my life as a parent of children with diabetes.

The most recent Dexcom device is the Dexcom G5. No longer do my kids have to carry a special receiver. Their numbers go directly to their iPhones and then the numbers are shared remotely with me on my phone. I can always know their numbers and sometimes my adult friends who use Dexcom G5 share their numbers with me too, especially if they are traveling alone and want a safety net.

So this last July while at Children With Diabetes Friends for Life my teens met other teens and had the best week ever. One of those teens became close with my oldest child and my daughter decided to share her Dexcom G5 numbers with him. That means he always knows her number and receives alerts if she is going dangerously low. At the time I thought it was sweet. I loved that she had a friend she could trust and confide in and count on.

I don’t require my kids to share their numbers with me although they do. That is to say I don’t provide consequences if they don’t share but sharing is highly encouraged.

Some teens might be concerned that sharing constant numbers with their parents would increase the “nagging” or micromanaging. I haven’t found that to be true with my kids but it is a common concern of teens with CGMs. <<<<this is important because maybe your teen won’t wear a Dexcom G5 because they don’t want a parent always watching, but what if they would wear it if say instead of a parent (or in my case in addition to) another friend received the numbers and low blood sugar alerts? That friend doesn’t have to have diabetes. It can be a Bff that doesn’t know the first thing about diabetes but would happily be a safety net for their best friend.

So anyway – my daughter shares her Dexcom numbers with this new FFL friend, who incidentally lives an entire continent away – 3000 miles. This friend would occasionally see low blood sugar alerts and text my daughter to be sure she is doing something about it. That’s cool and helpful. Less nagging from me.

A few weeks ago I went to bed with my phone on silent unknowingly.

The next morning I saw a number of notifications from Dexcom on my phone. A quick glance at my daughters Dexcom graph showed me that around 3am she had dipped below 30.

I didn’t know. I didn’t hear an alert since my phone was silenced.

The Dexcom graph showed that she was in a safe range at the time I woke up. Thank goodness but what about the middle of the night? Did she wake up and treat? Did her body release enough glucagon naturally to keep her safe?

No.

She didn’t wake up to her multiple low alarms. Her body was likely frantically pushing natural glucagon but probably not enough to keep her safe or alive.

It was her friend.

Her friend 3000 miles away heard the alarms at 3am alerting to my daughters severe low blood sugar. The Dexcom didn’t even give a number just “Low Glucose”.

This friend called my daughter no less than a dozen times until she woke up and treated the low.

This friend may have saved my daughter’s life.

Dexcom is the only CGM that allows blood sugars to be shared between devices across continents and around the world.

I may very likely owe my daughter’s life to a teenager and Dexcom.

Am I being dramatic?

Yes.

But is it warranted?

Yes.

I do not work for, get paid by, and I wasn’t asked by Dexcom to share this story.

I am sharing it because I believe in Dexcom, I believe in the power of friendships, and I believe that sometimes as parents we should consider the best ways to keep our kids safe while allowing them the freedom they so desperately desire. If your child is not enthusiastic about using a CGM that would broadcast his/her numbers 24/7 to you consider compromising by inviting them to find a friend to share with. There are also settings on the Dexcom application that your child can set which limits the visibility of numbers to those he/she shares with. For example the application can be set to hide graphs and numbers but send alerts for lows or extreme highs.

Talk to your child about using Dexcom and how it opens doors for increased freedom and peace of mind while also improving diabetes care, including less blood sugar checks.

oh – and after that event I made sure that my daughters friend had contact numbers for me in case he is unable to reach her.

It really does take a village to raise a child. Sometimes that village extends over 3000 miles.

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My daughter (blue hair) with some of her FFL including the young man who caught the low. Incidentally they are wrapped in blankets provided by Dexcom at the family movie night. Literally wrapped in the warm fuzzies Dexcom CGM provides.

 

High With A Chance of Ketones

I went to bed at 10pm last night.

All three kids safely within range with no active insulin.

I didn’t set any alarms for night checks, no reason to worry.

This morning I got up made coffee and packed lunches.

Middles got up and took a shower, checked BS (117) and ate breakfast. All was well.

Sugarboy got up, took a shower, checked BS (149) and ate breakfast. All was well.

No sign of Sweetstuff. I went up to get her moving guessing teenage girl ‘sleeping in’ issue. She was curled up still asleep. I nudged her and then poked her finger. As the meter counted down she mumbled “my site fell off”.

Huh? When?

She shrugged. She didn’t know when she just found it dangling.

(The infusion site that normally is stuck to her body that allows her to get a constant insulin drip was not attached.)

BS 418. Crud.

I ask her to get up and check for ketones. To check for ketones (something caused by lack of insulin – not a good thing) one must either pee on a stick or use a ketone meter to test the blood for ketones. We don’t have a ketone meter. She peed on a stick.

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Massive ketones. Not good. Chest hurts, feels nauseated, head hurts, pale.

To clear ketones she needs insulin, STAT. Plus time to start pushing fluids.

New infusion site, new insulin, yogurt consumed.

Moments later Sweetstuff is in the bathroom vomiting.

Call left on attendance line at school – Sweetsuff will be out today.

An hour later still large ketones. Sleepy child. Head hurts. Chest feels better. BS 271

Like me, when her head hurts she desires a hot shower, always makes head feel better.

2 hours later still large ketones. Still sleepy child. Head feels better. BS 201

3 hours later moderate ketones. Child is asleep on the couch. BS171

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Diabetes is stupid.

PS. Dear FDA – please hurry the heck up and approve Dexcom G4 for use with those under 17. Had she been wearing a CGM (continuous glucose monitor) this would be less likely to happen.

Did You Dose?

So Sugarboy took a shower before school Friday. Then he came down to eat breakfast. He tested prior to the shower and was high and he corrected by dosing insulin via his pump. Which (and he would be totally ticked at me for sharing this – but alas doesn’t read my blog) was why he needed a shower since he had an accident in his bed. It happens sometimes when he goes high at night. I thought he was good to go Thursday night when I went to bed at midnight with him at 178 with 0.6 units of insulin still working in his body. Unfortunately he wasn’t so he went high and thus the accident.

He finished his shower. Got dressed and came down to eat breakfast. He ate breakfast and I asked him to dose. He used his meter to dose his meal insulin (Animas Ping pump can bolus via his Ping meter). He ran off to brush teeth and hair. He had time to spare so he and his brother watched some TV while waiting for me to take them to school.

I stopped in the boys bathroom to turn off the light (they never turn off lights).

From the bathroom I yelled to Sugarboy: “Did you dose for breakfast?”

To which he said “yes”.

I said “no you didn’t.”

He said “yes I did”

I went downstairs, stood in front of him and said: “No, you didn’t.”

Without looking up he said “yes I did”

“no, you didn’t because I have your pump.”

At that point he patted around his waist, looked up and saw me holding his pump.

He had dosed using his Animas Ping meter which sent the bolus information to his pump to deliver the insulin. The pump and meter heard each other and the pump followed the instructions the meter sent remotely from another floor. Basically the pump dosed the bathroom counter.

Marcus reconnected and used the “fill canula” option to dose his insulin. He did not use the regular dosing features to dose since his pump believed he had already dosed. Dosing a second time would lead the pump to believe he had more insulin in his system than he did.

We love our Animas pumps but like any technology things can go screwy. Sometimes (although rare) the meter and pump can be less than 2 feet from each other and the meter will tell us it can’t communicate with the pump. Then there are these times (even more rare) that the meter and pump will talk to each other from an entire floor away.

From what I have heard the Animas Vibe – does not have the remote bolus feature. It had to be removed to allow for the pump to act as the Dexcom G4 receiver. Since the Vibe is not available in the US yet, and the Dexcom G4 is not approved by the FDA for people under 17 (thus not covered by our insurance) we don’t have to make any decisions regarding leaving the Ping option. But it will be a tough call once all the pieces fall together with the FDA and the Vibe. We love the remote bolus feature. Especially on nights where I need to actually use the pump to set temp basals while the kids sleep. (Remote cannot be used to change pump settings)

I do have a couple of suggestions for Animas though:

1 – provide a blood sugar check reminder alarm that can be set to alert user two hours after each meal or correction bolus.

2 – allow for multiple low cartridge alarms (blogged about that previously here)

I am grateful for insulin pumps – they make managing my kids diabetes much easier. I look forward to getting my kids the Dexcom G4 Continuous Glucose Monitors when the FDA approves for under 17 – when we test drove the Dex G4 it was the best diabetes week ever for me and both my kids. (Wish I could tell you more about our G4 experience but as participants in the G4 study to get FDA approval we was asked not to specifically blog about it)

I do want to say that I am not a pump snob. I believe that all the current insulin pumps available offer nearly the same features and get the job done. It is really just a user preference. Each pump available has slightly different features that may appeal to different families.

If you are considering an insulin pump I suggest discussing it with your doctor’s office, researching each pump online, calling the various manufactures to talk to experts, asking for opinions on twitter from people who use different pumps, consider your or your child’s life style, consider how much insulin you or your child uses in a three-day period (Animas holds 200 units – other pumps hold up to 300 units), and lastly although least important in my opinion – color options.

Here are some links to the pumps currently available in the USA.

Animas

Medtronic

T:Slim

OmniPod 

Happy Pumping all.

 

Sunday Seven

  • Dexcom G4 approved (for adults) – so happy for my DOC friends and all pwd/cwd that will be able to get the G4 – it is an amazing Dcare tool. Hoping FDA approves for under 17 so I can beg our insurance company to help us get them for our kids. Currently our insurance will not approve anything ‘off label’ so we need under 17 approval if we want financial help via insurance.
  • Hubby and Middles attended a 3 night/4 day field trip – missed having them around – hated not being able to chaperone myself (dads with sons/ moms with daughters). They both had a blast and I’m thankful Chad had a chance to spend the time with Middles on a school event.
  • During a late night sugar check I walked in to find Sugarboy drinking an imaginary juice – blood sugar was 46 – gave him a real juice – check in 30 min to find a lower sugar – another juice – 30 min later 118. Sad and thankful to find other dmamas on FB (one whose son was eating an air sandwich about the same time sugarboy was enjoying his imaginary juice)
  • While walking to lunch after class a friend of Sweetstuffs thought she (sweetstuff) looked ‘off’. She encouraged Sweetstuff to test her blood sugar. Sweetstuff said she was fine and continued on to lunch (she was gonna test soon anyway). The other student continued to encourage Sweetstuff to check her sugars. Begrudgingly Sweetstuff did as she was asked sooner than she would have for lunch. She was 35. While the friend could have gloated or said “i told you so” she instead fished a fruit roll-up from the Dpack and handed it to Sweetstuff – she also alerted a teacher. First have I said how badly I want the Dexcom G4s for my kids and second have I told you all how blessed we are for all the wonderful friends Sweetstuff has made in our new home.
  • I had an off morning – I texted some wonderful DOC friends in a group message that I hated CA and wanted to go home to TX. I got lots of virtual hugs back. I love “The Hive” – and I am thankful to always have this group of friends in my pocket – always only a text away.
  • First family outing since we officially moved in to our home. We went to a pumpkin patch with a huge corn maze. The boys took off on their own to find their way through the maze (daddy close on their heals) while Sweetstuff and I wandered slowly through the tall corn stalks and discussed how much more fun it might be at night. After navigating the corn maze we picked out pumpkins, enjoyed some fresh corn on the cob and called it a win.
  • Today – best day of the week. Completed our first ever JDRF Walk to Cure Diabetes in CA. It was at the Oakland Zoo. It was very foggy and misting just a bit – perfect walking weather. We were joined by two of Sweetstuff’s friends and another mom. I met Mr. Mike Lawson of the Diabetes Hands Foundation promoting the Big Blue Test. He is as sweet in charming in person as he is in the DOC. Can’t wait for more meet ups.