A Day In The Life of a Type 1 Diabetes Parent

Oh boy has it been awhile since I posted last.  In May, Everett became our hospital’s youngest to be diagnosed with Type 1 diabetes at 8 months old.  If I’m being honest, the last four months have been hell regarding this autoimmune disease.  I was inspired a few times to document a day in the life and how many decisions we constantly make now that we are our son’s pancreas 24/7.  And I gave up before 10am every time.  But a few weeks ago, I did it.  I documented the entire day from midnight to midnight!

While most people are sleeping…

12:02am – I rollover and do what has become the norm multiple times at night, half asleep I check my phone’s follow app for Everett’s Dexcom.  227 angling down.  I groan at the number, arrow, and time. We’re going to go low tonight.  Again.

2:38am – alarms go off to alert us of a low.  95 angling down.  It’s Landon’s first day of school and I have the day off for some appointments for Everett so I get up and make a 2oz bottle (4.4 carbs).  Thankfully Everett drinks it fairly easily in his sleep and doesn’t wake up. 

2:49am – bottle is done and Dexcom is showing 96 with a side arrow. This is promising that we won’t have alarms every 5 minutes for an hour like last night’s low while the carbs were kicking in.  We do have sugar water but Everett hates it and while it definitely hits his blood faster, it usually falls back down too soon for us.  I wonder what we’ll use when he’s weaned off bottles.  I think juice is too thin for him to drink. 

Morning routine always starts at 7

7:03am – give 1.5 units of long acting insulin. 

7:15am – debating how to handle his meals before appointments.  Normally he has solids at 7:30 and a bottle around 9 followed by a nap.  But we will be in the car from 9-10 and his physical therapy appointment is at 10.  Do I try a small bottle at 8:30 before we go to tide him over and he can sleep in the car?  But he’ll still have insulin from breakfast in his system so we’ll risk going low in PT.  Plus, the smaller the bottle, the less carb coverage he usually needs.  But sleeping in the car will bring him up giving us a false trend.  And I hate pulling over to give insulin on the way.  We’ve done that a lot.  Maybe push breakfast off to 8?  Or do we hurry up and get there a little after 9 for a bottle before?  But then he won’t sleep and he’ll spit up. 

Breakfast

7:18am – my internal debate is stopped when I see he’s 155 angling down.  Breakfast can’t wait until 8. 

7:27am – 17 carbs (a pouch of banana and pumpkin).  It’s higher calories and will hopefully keep him full the longest.  If we have to feed him during PT, then we will. 

7:37am – bg (blood glucose) has turned to a side arrow while eating.  If I give a 5 carb coverage that’s 3.4 units.  I pull back 3 then decide to give 2.5 since he’s not done eating yet. 

7:49am – pouch is done.  He’s 175 angling up.  If I’m aiming to not feed him until 11 after PT, plus he’ll wiggle now before sleeping in the car, I’ll wait a little bit to give an additional unit.  I think. 

What sort of day will Everett’s blood sugar have?

7:53am – 204 straight up.  If I give 1 more unit now, it won’t kick in for a half hour.  But the 2.5 I gave hasn’t kicked in yet.  He’s been running lower than normal some mornings this week.  Is today one of them?

7:58am – 240 double arrow up.  But the first insulin hasn’t kicked in yet.  And we have to make it later until he eats again.  Just for kicks I calculate what a 4.5 carb coverage would be.  3.8 units.  So 3.5 isn’t that outrageous if I give another unit.  But we have to make it until 11.  I just need to be patient and wait.  He’s happy and playing. I’ll stop watching for the next number and take a 5 minute break. 

8:15am – 295 double arrow up but it looks like it is starting to peak.  The last dot is fairly close to this one.  I bet the next number will have a single arrow. 

8:20am – 294 single arrow up.  I was right!  I’ll take the small wins when I can. 

8:40am – 257 angling down.  I’m not sure how things will go but since we’re ready early, might as well start the long drive to the clinic.  

On the road

9:08am – 215 and still angling down but Everett finally falls asleep halfway there.  I pray his sleep will bring his levels up a bit.

9:45am – 249!  We are parked and ready for PT.  Hoping breakfast and the last insulin dose are worn off enough that he’ll hold steady for the next hour.

At the clinic

10:40am – 198 angling down.  PT is really burning the sugar right now and he is not enjoying all this hard work.  I start feeding him puffs while his physical therapist works on standing with him.  It’s a bit chaotic but we make it work.  He gets 10 puffs which equals 1 carb.

11am – 167 side arrow.  I’m mixing a bottle in the waiting room before we see the dietitian.  He gets about two gulps and then we have to get weighed.  Everett is down 4 ounces from Monday (4 days ago) and on Monday he was down 4 ounces from 10 days prior.  He’s still gained weight in the past 4 weeks but only about half of what the dietitian would like to see.

11:38am – 177 side arrow.  Bottle is done but he’s not coming up very fast for this time of day.  I will wait to give insulin. 

12:01pm – 201 angling up.  I give 1.5 units for 13 carbs.  Normally he’d get 2.5-3 but I really hesitate to even say we have a “normal” for his bg and carb coverage needs.

Lunch and errands

12:07-2:37pm – Everett sleeps while my mom and I have lunch and run a couple of errands.  His bg started at 215 and eventually peaks at 316 at 2:23pm before starting to come back down.  If there is one thing we can count on, it’s that his bg will drop when he wakes up from naps during the day.  Sometimes it feels like his body holds the insulin and it only works after he wakes up.  It’s not scientifically possible, but if you know our journey, Everett defies science and the odds of things happening to him.

2:38pm – 308 side arrow and fully awake.  Everett is too high to eat so we will head home.

2:48pm – 285 down.  He’s dropped 15 points in 5 minutes.  I was going to take the interstate home but now will go the other way so we have more places to pull over and feed him if he starts dropping quickly.

Heading home

3:35pm – 201 and still going down.  He was bored and seems to have fallen back asleep.  We’re 15 minutes from home so this sleep will hopefully slow his bg dropping.  Then it will be a rush to feed him.  We’ll skip solids for lunch and go straight to his afternoon bottle since it’s already so late.

Home and frantically starting a bottle

3:56pm – 180 and bottle is started.  

4:18pm – 141 angling down.  Hoping it starts turning around soon.

4:23pm – 141 side arrow.  Thank goodness because he’s not drinking very fast.

4:43pm – 177 angling up.  He’s not wanting the last half ounce so we call it.  12 carbs and we give 1.5 units of insulin, dividing by 8.

4:53pm – 192 side arrow and then he starts going back down.

Dinner time

5:30pm – 157 angling down.  Hasn’t been that long since his bottle but we need to start feeding him.  I mix up a turkey puree and green bean puree with some olive oil that the dietitian recommended for more calories.  The whole meal is only 6 carbs so we may not give insulin.

5:50pm – 190 angling up.  Everett does not want to eat anymore.  I weigh what’s left in the bowl and subtract that from what it weighed before he started eating.  (Yes, I weigh all his food beforehand just in case.)  He ended up eating about 4 carbs.  We do not give insulin.

Nighttime routine

6:55pm – 238 side arrow.  Reminder alarm for his split dose of long-acting goes off.  Since we had lows the past two nights, we decide not to give the dose.  Everett may run higher in the morning but the low seems to hit when the long-acting kicks in after his fast-acting brings him down.  He’s needed such little insulin today, it’s hard to predict what will happen with less long-acting in his system.

7:34pm – 232 side arrow.  He’s been hanging in the 230’s for the past hour.  We give 1.5 units to start bringing him down before his bedtime bottle.

7:43pm – 240 side arrow.  We start his bottle.  He drinks all 13 carbs.

8:45pm – 258 side arrow.  He’s done with his bottle.  We debate how much more insulin to give since he’s hardly needed much carb coverage today.

Bedtime

8:52pm – 263 side arrow.  Everett falls asleep for the night.

8:59pm – 289 angling up.  We give 1 unit and get ready for bed ourselves.

10:58pm – 354 side arrow.  We wake up to an alarm but that side arrow is deceiving so we decide to wait for the next number before we take any action.

11:03pm – 359 angling up.  That darn arrow.  Landon goes and gives 1 unit.

11:23pm – 364 side arrow.  Alarm sounds.  Just gave insulin so can’t do anything more right now but the arrow switching back to the side always makes me regret our decision.

11:38pm-12:23am – alarm sounds every 5 minutes but we somehow fall asleep.

Everett peaked at 376 at 11:38pm before starting to slowly come down.  At 12:28am he finally dropped to 349.  Alarms only go off if he’s over 350.  Between 3:45am and 6:45am Everett stayed very steady around 200.  And his parents got some sleep during that time too!

Are you still with me?

Thanks for staying until the end!  Around 8:20 this morning I regretted starting this documentation.  I couldn’t possible record every thought and internal debate I had with his blood sugar.  Studies have been done that estimate those with Type 1 diabetes make an additional 180 decisions in a day.  Landon and I (and Everett’s grandparents) feel that so much.  I think we may have more since he’s so inconsistent. 

Things not mentioned:

• The range we like Everett to be in is 175-225.  200 being the number we use for calculating corrections.  If you do not know someone with Type 1 diabetes, this may not make sense.  And if you do know someone with Type 1 Diabetes, these numbers may seem insanely high.  Perhaps I’ll write another post to explain.
• Everett’s fast acting insulin is diluted.  So when I say 1 unit, it’s really 0.01 units.  When we debate between 1.2 and 1.5 units, we’re literally debating between 2 hundredths of a unit – and yes, that small amount can make a big difference!
• We had two bags with us all day.  His diaper bag is solely diapers, bottles, and diabetic supplies.  The second bag had his food, blanket, extra onesies and burp rags, and some toys.
• Grandma was the real MVP because she could check his numbers on his phone while I was driving.  If I had been alone, the drive to the clinic would have been a lot more stressful and I would never have gone anywhere afterwards but home.
• When Everett gets down to 160 or less (during the day) and the arrow is angled or straight down, it’s urgent to feed him.  When this happens, we usually get down to 100 after he’s been eating awhile because the carbs don’t bring him up as fast as a low in the middle of the night.  You can kind of see that with his afternoon bottle.  He was drinking for a half hour and still dropped 40 points during that time.  It’s always more stressful when he’s below 200 and we are away from home.  The reaction time and having what we need gets dicey on the road.
• Lastly, Dexcom G6 is, quite literally, a life saver.  We do not have to prick Everett’s finger to know his blood sugar levels.  The unit on his leg sends a new number with arrows showing trends every 5 minutes to his phone.  It is also what alerts us of highs and lows, especially useful during the middle of the night!