The Joy Before Me

I recently kept play-by-play records of how we manage Mackenna’s type 1 diabetes over the course of 24 hours.  I need you to know that my point in sharing this with you is not for pity, and not for praise.  The reason I’m sharing this is because people still think that diabetes is what happens to overweight adults, and that an insulin pump is a cure.  Neither, of course, is true.  And until people realize the reality of life with type 1 diabetes, they will be hesitant to support funding research for a cure.  And we need a cure…because this life is pretty crazy!  Take a look:

November 13, 2015

10:13pm

Typically at this time of night, Mackenna’s BG (blood glucose) tends to be a smidge on the high end.  Not tonight.  Her continuous glucose monitor (CGM) was just inserted this evening and still in the warming-up period, not able to transmit any data.  We are ready to go to sleep, so we check BG like we always do and were shocked to see it at 61.  (So shocked in fact, that we did a second finger poke just to make sure it was right.)  Since 61 is too low, Mackenna needs sugar.  She eats 10 carbs worth of apple sauce and goes back to sleep.  I stay up, and plan to check her again in a short while.

 

10:42pm

Time to recheck BG to make sure it is on its way up.  Nope.  It’s actually gone down in the thirty minutes since she ate that apple sauce.  Now she is at 42.  This makes no sense, but that’s the crapshoot that managing diabetes is sometimes.  (You can read more about what I mean by that over here.)  Mackenna needs more sugar.  She gets 10 more carbs and I stay up to check her again in a short while.

 

11:10pm

BG is now 91, still not in her preferred range of 95-150, but close and definitely heading in the right direction.  I will check one more time before going to bed.

 

11:36pm

BG is 106.  I’m going to bed!

 

November 14, 2015

2:30am

My alarm goes off to check Mackenna.  This is a picture of the monitor on the side of my bed.  It shows me her sensor data.  It’s not exactly the same as her BG, but it’s generally pretty close.  171 is too high, and that little arrow means she is heading up.  A finger poke reveals a BG of 168.  She gets a teeny amount of insulin through her pump and I’m going back to bed.

 

4:30am

My alarm goes off again.  I had set it to make sure her BG did in fact head back down into range after that last check, and also to make sure she didn’t end up going too low.  The monitor currently says 158 with one arrow down.  If she keeps dropping and is headed toward a low BG, the monitor will alarm and I’ll check with a finger poke.  For now, I’m going to go back to sleep and hope it levels off in range.

 

6:05am

The monitor alarms.  Justin checks BG with a finger poke…it’s just 66.  She eats a 10 carb apple sauce pouch.

 

6:30am

Our boys (ages 2 and 4) are awake.  Justin is getting up with them so I can sleep a little.  What a guy!

 

7:39am

Mackenna is ready for breakfast and we were ready to give breakfast insulin, but her BG is a smidge too low.  So she’s having a 4 carb glucose tab to raise her back up into range before she gets insulin.

 

7:58am

BG is 113.  Mackenna’s breakfast is pancakes, sausange and a clementine.  We weigh most foods.  Two ounces of pancakes with sugar free syrup is 20 carbs.  The clementine (1.8 oz) is about 5 carbs and the sausage is 0 carbs.  She got 1.45 units of insulin through her pump and can eat in about 10 minutes.

Insulin takes about 15 minutes to start working, so it’s best to administer it 15 minutes before eating so that the carbs and insulin can both work together at the same time, balancing each other out.

 

9:33am

We are getting ready to head out for a JDRF sponsored playdate at the Maple Maze (large indoor playground) with other families and kids with type 1 diabetes.  Activities like this require a lot of energy which makes Mackenna’s blood sugar drop, so we are bringing extra sugar: applesauce (12 carbs) and skittles (1 carb each) along with her glucose meter kit and glucose tabs (4 carbs each).

 

9:59am

We’ve arrived at the maze a little early.  Mackenna feels low.  She checks her BG with a finger poke, 70.  Too low, plus I know she’s going to be really active, so she gets 10 skittles (10 carbs).  We will check again before she starts playing in the maze.

 

10:30am

A friend gives Mackenna a fun sized sweet tart.  I’m not sure how many carbs are in it, but can’t be more than 7 or 8.  Since she’s about to go into the maze, I let her just eat it without any insulin.  BG is now 135 and she’s heading into the maze.  Will need to check BG again soon.

 

11:37am

I waited too long to check (insert mommy guilt).  BG is 64.  She is sucking down that 12 carb apple sauce.  She’ll need to take it easy for a while so she doesn’t go any lower.  Makes me feel bad I didn’t grab her sooner for a finger poke.

 

12:10pm

Well this is a first for us.  Mackenna came down the slide in tears, crying, saying that her site hurt.  I took a look and sure enough, it got ripped out.  Her skin is scraped and bloody.  It’s not ok for her to go a long time without insulin, so we’re heading home to insert a new infusion set.

 

12:30pm

Insulin infusion set change.  This really stinks because it’s a bigger poke that we usually only have to do every other day.  She just had a fresh one inserted last night.  Hate extra pokes like this.

This pink contraption helps insert the tubing beneath her skin.  You can see the needle in the picture.  That needle pushes the tubing in and then retracts, leaving a 6mm length of plastic tubing under her skin.

 

12:46pm

BG is 163.  We are counting carbs for lunch.  1 cup of mac-n-cheese  (47 carbs), 2 ounces of carrots with some ranch (5 carbs), a fruit cup (13 carbs).  Total of 65 carbs.  Mackenna gets 3.0 units of insulin through her pump.

 

1:05pm

Mackenna picked skittles for her after-lunch treat.  15 carbs entered in her pump and 0.65 units of insulin administered.

 

3:58pm

We just came in from playing outside.  We have been watching Mackenna’s sensor data in her pump.  We are heading to a park with the boys and M wanted a snack so we did a finger poke.  BG is 130.  She chose Cheez-its (16 carbs).  Based on this morning’s pattern and previous experiences at this park, I am predicting she’ll need extra carbs to avoid a low BG.  Therefore, she gets no insulin to cover her snack.

 

5:06pm

I’ve been watching her sensor data.  Five minutes ago it said 124 with no arrows.  Just now it said 97 with one arrow down so we check.  Finger poke reveals BG is 56!  Mackenna is eating 15 skittles and taking a break on a bench with me.

Sensor data can be 15 minutes behind actual BG.  I’m sure it will alarm at us soon, predicting a low.  Mackenna doesn’t always feel her lows, especially when she’s having a lot of fun, so we rely heavily on those sensor alarms.

 

5:10pm

Pump alarms “LOW PREDICTED”.  Called it.

 

6:26pm

We’re having dinner at Panera.  Mackenna is having a cup of broccoli cheddar soup and a tube of yogurt.  I used my Go Meals app to figure out how many carbs in each.  Total of 27 carbs and she gets 1.0 units of insulin.

 

6:46pm

She’s still hungry and asked for a treat.  A fun sized Twizzlers candy is 11 carbs.  She gets 0.4 units of insulin.

 

7:20pm

It’s bedtime for our cherubs!  We check BG before M brushes her teeth in case she needs a snack.  BG is 78.  Too low.  She is eating a 12 carb apple sauce pouch.  We have had a TON of lows today.  This is not normal for us.  But like I wrote on the blog here, what worked yesterday won’t work tomorrow, 1 + 1 does not always equal 2 with diabetes, and it often really does feel like a crapshoot.  I’m really hoping this low trend doesn’t continue through the night.

 

8:00pm

Sensor data still shows her in the low 80s.  Finger poke.  BG is 84, just 6 points higher than 40 minutes ago.  She gets a 9 carb juice box, sings me a little song, and then goes back to sleep.

 

9:15pm

BG is 146 and because I got so little sleep last night, and I don’t know how tonight’s going to go…I’m heading to bed early.

 

The graph above shows Mackenna’s sensor data for the day…you’ll notice the mountains and valleys.  That’s what it looks like when a person tries to be a pancreas.  If I had a graph of my own sensor data for 24 hours, the line would be pretty flat, and pretty close to 90 the entire time…that’s because I don’t have type 1 diabetes; my pancreas works.

So there you have it, 24 hours in our world.  18 finger pokes, 1 infusion set change, 10 low BGs, 2 high BGs, 6 in-range BGs, 100 extra grams of carbs not covered by insulin, 5.9 units of insulin to cover meals and snacks.  Definitely a crazy diabetes day for us, with more than a few hiccups.  But through it all Mackenna was just a 7-year-old girl playing and eating and doing what any other 7-year-old girl might do on a Saturday.  She’s safe.  She’s happy.  And that’s all that really matters.

One more thing…If you’re still reading, I’ve mentioned before about the fact that parents of children with type 1 diabetes don’t get much sleep.  Personally, I don’t really get an uninterrupted 6 hours of sleep more than once every couple of months.  But the day illustrated above, waking up 3 times in the middle of the night for D, is also not the norm around here.  It’s normal for me to wake up once or twice to check Mackenna’s BG.  I’ve also mentioned before that God always seems to give us exactly what we need exactly when we need it (you can read about that here).  He is faithful.  Case in point: After this crazy diabetes day, I really needed a solid night’s sleep.  My energy was totally zapped and I really needed a solid night’s rest.  As always, He delivered.  The very next night, I slept from about 10pm until 8am!  I honestly can’t remember the last time I got that much sleep!  He knows.  He is faithful.  His strength is perfect, when mine is gone.

“Jesus said, ‘Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.’ ” (Matthew 11:29)