Thursday, November 2, 2017

Newborn Baby

Newborn Baby

June 29.  THAT was my last blog?  Jeez.  Time flies when you're having fun.  I'm going rogue here and blogging free lance, which means, I didn't type-edit-save-edit-type-save-edit-publish first.  We'll see how it goes and how many mistakes you catch.

Last week we had a heck of a week.  I made some changes to their insulin rates and correction factors, so for two nights in a row, we chased lows down all night.  Imagine one of the loudest and most annoying sounds/beeps ever.  That's what we kept hearing all night.

When we silenced the alarm for one boy, the other one would sound.   One night, Jerry was up nursing the boys/Dexcom for about 3-4 hours.  However, he forgot to take his phone with him (which elicits said annoying sound) so it continued to wake me up.  Work doesn't care how Diabetes behaves, so he went to work with bloodshot eyes.
Jerry.  This may or may not be his actual photo that morning.

The next night, I took the hit.  I was up and down all night.  Needless to say, I crawled back into bed as soon as the boys were ready for school.  Fortunately, I had the day off and could sleep a few hours.

The third night, I had taken the boys out to eat, so instead of low, they were high.  I had to get up to correct their high sugars.  Lesson:  If you knew how hard your body worked to process a heavy meal, you'd never do it again.  Well, ok, maybe you would, but you'd think more about it!  What happens is their insulin dosing is fantastic and covers them for 4-6 hours, THEN the fat is processed and the glucose jumps through the roof.  I digress.  The point is, I was up and down trying to get their glucose levels to normal before morning.  I succeeded but I lost another night of sleep in the process.

I figured out the problem and the next few nights were ok.  Fortunately for Jerry as I had to work three nights in a row.  (See eyes above).

Last night, we were both super tired so we went to bed early.  I startled awake at 2 am, after a whopping 5 hours of sleep. I couldn't shut my brain off.  I wondered, "Why haven't I heard the Dexcom alarm?"   Instantly, I think negatively.  OMG, I bet they're not tracing (technology and wi-fi isn't perfect); clearly they're up there low and dying and I'm just laying here.  Wait, listen.  Do you here the devices alarming from the next room?  Nope.  Clearly they failed, too.  Finally, I look at my phone.  Both boys are normal and steady.  Shocker.  

But, then guess what?  It was just enough thought and full bladder to fully wake me up.  I tossed, I turned.  I contemplated the meaning of life.  I counted sheep.  Nothing worked.  I finally got out of bed at 4 am.  Ran an errand.  (Yes, I can do that at 4am since hospitals are open 24/7.  Fortunately my night shift gals were around to visit with).  Then, I headed to work.  A full day with students.  A job that doesn't care how Diabetes behaved or how much sleep I had. Put an extra shot of espresso in my Starbucks, please!   I have to take my bloodshot eyes and physical fatigue, put my best face forward and plow through the day, all the while plotting and planning how I can possibly get into bed by 6:30 pm without feeling like the most awful mother on the planet.

I think I've said it before, but having children with Diabetes is like having a perpetual newborn baby.  So many nights, we are up and down tending to low or high glucose levels. One boy, both boys.  Who knows?  Good food, bad food.  Pump failures. Even when all is well, we wake up to make sure all is well.  There's not a night that one or both of us aren't up at least once to assure the boys are ok.  It's exhausting.  It's like tending to that newborn baby.  Some nights they barely cry, some nights the cry all night, and when they don't cry, you panic and go make sure they're still breathing.  It's exhausting.  

Childhood should be simple, and Diabetes complicates it tremendously.  I work hard to make sure they can be kids and their lives, their childhoods, are as simple as possible.  The price:  Sleep.  The payoff:  Healthy, well-rested children.

In the meantime, life goes on and Diabetes doesn't care.  It won't be forever for me (although I am sure the worry will never cease), but it will be forever for them if we don't find a cure!

Until my next nap,

Thursday, June 29, 2017

Science and Technology


It’s been awhile since I’ve blogged.  That’s not for lack of ideas but rather for lack of spare time.   Working, being a wife, being a mother, being a pancreas…doesn’t allow for much else.

Approximately three years ago, after much research and suggestion from other T1D patients and parents, we decided to get Continuous Glucose Monitors (CGMs) for our boys.  I was reluctant at first because I wasn’t sure it would really save them any finger sticks, and I really didn’t want another adhesive attached to their sensitive skin.  We figured out some hacks to minimize skin irritation, and now, frankly, we’re quite dependent on these little devices.

There are others on the market, but the CGM we chose is made my Dexcom.  If you don’t already know, a little filament (sensor) is inserted under the skin and reads the glucose level in the interstitial fluids. The sensor then sends a reading to the transmitter (attached to the sensor).  That transmitter sends a signal out to the receiver where we get a reading.  It tells us what the approximate current blood glucose is and which way it’s going…steady, up or down.  The receiver alarms for highs and lows based on preset parameters.  It’s science, B!tch#$!  (Sorry, we’ve been re-watching Breaking Bad).

Science and Technology.  Science and Technology that allows for peace of mind, safety and rest.

Before Dexcom, we had to check their sugars at their bedtime, at our bedtime, and anywhere between one and five times per night…each.  That’s a lot of pricks, a lot of expensive strips, a lot of trips up and down stairs, a lot of lost sleep.  It’s no wonder I put on weight because the sheer exhaustion.  That said, a blood test simply tells us what the sugar is in that moment.  It tells us nothing about the trend.  We talked the other day and wondered how many times were one of our sons dangerously low in the night and we never knew.  Now, Dexcom allows us to rest a little easier at night, although there are some nights we really want to toss it out the window.  We can count on it to alarm to wake us up to treat a high or low.  And, if we wake up on our own, we can just check our phones (we have an app that follows the Dexcom readings called Dexcom Follow) and see how the boys are doing.
Days like this are great!  Normal value, steady line.

My boys are now old enough to stay home alone, but with Diabetes in the mix, that’s a much more nerve-wrecking notion.  With Dexcom and Dexcom Follow, I feel more at ease because any moment I can check my phone and see how their glucose levels are running.  That said, I can call and check and guide their decision-making process if needed.  However, I’m blessed with some pretty smart little dudes who 99% of the time have already done what I would’ve done had I been home. 
Low but steady.  

I still have to work night shifts a night or two per week.  When I am home, Jerry and I take turns getting up to handle Dexcom alarms.  It just seems like it wakes one of us while the other is in a different phase of sleep and misses it.  When I am at work, I can still be Jerry’s backup pancreas and alarm.  I feel comforted that I can check them in the middle of the night while I am working.  We have a system.  If something’s amiss, I text him and give him time to message back.  If I don’t receive a message back, I call and wake him up.  More than once, he was in that deep phase of sleep where he did not hear the alarm. We’re a team and we do what has to be done to protect our precious guys.  #Teamwork.

Nights like this stink.  Low and falling....

My girls at work are fabulous.  They’ve become very used to the Dexcom Follow alerts.  Many even know the difference between the high alarm and low alarm.  They are like extra backup wives to Jerry or third, fourth, fifth and sixth pancreases to the boys….    If my phone alarms while I am away from it, they will run it to me and tell me “Diabetes alarm went off.  One of the boys need help!”  They also make sure I follow up with Jerry if treatment is needed.  They’re on it with me.  #Teamwork. 

My initial fear that this wouldn’t save them finger-sticks was unfounded.  With advancing technology and upgrades, they’re really only required to check their sugar and calibrate the device twice per day.  If all is steady and well, they can rely on the reading to dose for meals.  Obviously, if they are high or low, we require they check and treat according to what the blood reading is, but overall, it does save them some pricks….which saves on strips.
This warrants a phone call....

JDRF is one of the primary organizations that has funded research for such technologies like Dexcom.  They work with the FDA for approval of such life-saving devices.  They lobby Congress for Medicare, Medicaid and private insurance coverage of CGMs, knowing such devices foster independence and improve safety of Diabetes patients.  I honestly feel that on more than one occasion, Dexcom has saved my boys’ lives when they’ve gone low unexpectedly or without explanation.  If that annoying alarm hadn’t awakened us, then….  I don’t even want to think about what if.

Word on the street is that Dexcom is teaming up with Omnipod (my boys’ insulin pump company) to have the devices talk to each other and serve as an artificial pancreas. 2018 is the projection!  Can’t wait.  Science and technology.  Research funded by JDRF. 
Picture of an Omnipod and a Dexcom sensor side by side.  You can see what is injected under the skin.

If you’re on the fence about getting Dexcom, I’d highly recommend it.  It takes some practice and finesse, but it’s well worth the time and money spent.  If Diabetes and/or CGMs aren’t on your radar, then you can help by helping us support JDRF and their efforts to make life better for those with T1D, and you can write your Congressperson to encourage their support of the Special Diabetes Program and insurance coverage for Diabetes supplies. #CoverageforControl

You can help today by supporting The AA Team as we help JDRF turn Type One into Type None for Asa and Aiden!  There's no gift too big or small as every dollar raised is a dollar closer to a cure.