FUDiabetes

Two Years ago, this week. (Warning, long and rambling thoughts encountered below)


#1

This was the week two years ago that my son spent his first full week at home with Diabetes. Below you will find some ramblings and musings from when we first got out of the hospital to today. Sharing this with mere mortals leads to lack of understanding, but I know you guys get it.

Year 0
• Whole family under stress, the ICU visit was still in short term memory
• Logging everything in notebooks, fearful that we would miss something
• Blood sticks required thought before pushing the plunger
• Injections took more than 5 seconds and required effort before my son pushed the needle through his skin
• Nights were filled with fear of lows
• My son’s whole body hurt really bad, and even though getting his bg in control made it a bit better, it was still painful most of the time, and there was nothing we could do that helped. For months…
• My wife and I were getting graded on how painful our injections were
• We didn’t understand cause and effect very well with insulin, taking too much insulin at times, taking too little insulin at others. The result was our son’s bg was a roller coaster
• Only physicians or NP’s changed our dosing
• Every damn recipe we made had to be converted to weight and have carbs calculated. Why oh why can’t we be more like the Europeans and have weights included in our recipes?
• Many of his friend’s parents didn’t want Cody to visit without Kris or I also being there
• We felt very out of control and scared

Year 1
• We had done MDI for 9 months, and CGM and Pump for 3 months.
• Blood sticks were effortless and pump site changes were accomplished fairly easily, although someone still watched my son each time to make sure we agreed that the fill/prime/site attachment steps were done correctly.
• Every common recipe we use had been converted, and now it was only the new recipes that required calculation. (relief)
• Eating out was still a challenge, but we did it more frequently anyway.
• We began to really appreciate the cause and effect, had some of them figured out and were working on others. The pace of diabetes had slowed for us.
• We had learned that pump sites fail and always have backups on hand, especially during important events.
• CGM and pump Alarms ruled our life.
• His friend’s parents stopped worrying so much when he was at their house, even allowing him to sleep over on occasion.
• We felt in control, but still had a fair amount of fear and frustration.

Year 2
• Today my son is amazing. He has taken full control of his diabetes and is treating it his way.
• He has maintained acceptable A1c’s (6’s) despite playing multiple sports, skiing, eating what he wants from time to time, going out with friends, getting stuck on the ski bus for 5 extra hours without a meal, etc. etc.
• We (I) still consult with him from time to time, but he is a teenager and clearly in-control and doing well.
• It gives me (and sometimes my nervous wife) comfort that he has grabbed the Dia bull by the horns and is going to be just fine and able to accomplish whatever he wants.
• Nobody watches him do site changes anymore, unless he asks.
• No one double checks his dosing, he adjusts almost every insulin pump suggestion based on what he is going to do in a couple of hours.
• All of our alarms have been tailored so we only get ones that we want to act on.
• He eats pizza and laughs at it…

Diabetes has gone from my biggest fear, to taking a back seat to my fear of teaching him to drive. Man, they grow up quick. Much of what we have learned, has been due to you as a community and so I want to say thanks as I reflect on the last two years and try to keep the tear in my eye and off my cheek. You have helped us on our journey in transforming our Padawan into a young diabetes Jedi. Thank you.


#2

Love this. Can’t wait until this can be our write-up one day for Liam! We’re coming up on our 2 year Diaversary in Feb and we’re naturally a long way away from him being able to self-manage, but we know it’s coming someday.

Self management is a dream we can’t wait to achieve one day! If we teach them well, hopefully as you said, they’ll be able to take the Dia bull by the horns and do just fine!

Congrats to you guys!


#3

Thanks for the kind thoughts, and yes I know it seems miles away, but as with all things kid-like, will come more quickly than you or I are ready for. I can only imagine what Cody would have been like, self managing as a 7 year old…scary. I know with you and your wife, Liam will get there too!


#4

Awesome, awesome, awesome!


Add this simple rule for him - check your BG every time before you start the car.


#5

That is one important rule right there!


#6

Nicely done, the write up is great. With your trust and respect he’s grown into an independent, self-confident young man!