My first misadventure away from home: my dad

We had all decided, from the weekend following Kaelan’s diagnosis, that diabetes would never limit him. 

Later this summer, we had our first practical test for this decision. Kaelan had already spent a week at overnight coding camp the year before. Months before his diagnosis, at his request, we had booked him another week of overnight camp at the same place, in Madison, a bit less than an hour from home. It was inconceivable, to us, to make a change to these plans. 

We spent some time planning what Kaelan’s kit would be. It was not so hard: we just needed to make sure that he would have all he might need in large quantities. Because Kaelan sometimes keeps his head in the clouds, we had to plan for backups and backups of backups. We did. Here is what we had for him:

• 1 thermos of insulin, kept in the camp fridge
• 2 glucagons sets, one in Kaelan’s glucose slingbag, one in his suitcase
• 2 jars of ketosticks, one in his glucose bag, one in his suitcase
• 2 glucose meters, a primary in his glucose bag and a backup in his suitcase
• 25 glucose test strips per day, 2 jars of which were in his glucose bag, and the rest in his suitcase
• 2 fastlclik lancing devices, one in his glucose bag, another in his suitcase
• 2 needleclippers, one in his glucose bag, another in his suitcase
• Tons of alcohol wipes
• 400 grams of carbs, divided into 8-gram bags.
• A diabetes dog tag on a neck chain
• Multiple diabetes labels clipped to his glucose bag and to his carry-on suitcase.
• 1 cellphone

All his spare gear was grouped in a backpack inside his carry-on suitcase.

All summer, Kaelan had taken care of himself well, with light supervision (but some anxiety) from us. We knew he was capable of doing well on his own. The only worry we had was how well he would do at night: he would have to set up an alarm to get up every half hour as long as his blood glucose was not stable. The plan was that, in the evening, he and I would talk to each other on the phone until he was safely flat. 

My wife and I, of course, were concerned that he may not wake up to his alarm. We talked to the camp director shortly before bringing Kaelan over. He told us that he would be reachable on the phone in case we could not get a hold of Kaelan at night, and gave us his phone number. This was our fallback: we were very relieved.

The first five evenings went well. The children’s food was not really easy to deal with for T1Ds (pizza, burgers etc.), so Kaelan had to stay up late several nights, often till past midnight or sometimes 1:00am. The kids stayed up late, and got up quite early, around 7:00am: as the days went on, he became harder and harder to wake up with a phone call. 

The 6th night, Kaelan was quite high for a while, then started going down. We texted multiple times as he kept going down, and he had to take several bags of carbs. Around midnight, he needed to get up again 15 minutes after a fairly low glucose test (around 50), but he would not pick up. WE kept on calling and calling, to no avail. After 10 minutes and 20 calls, we decided to call the camp director: my wife was calling him while I was calling Kaelan. Another 10 minutes passed, but we were not able to get to either. 

At this stage, I jumped into the car to drive to Madison. We agreed that my wife would keep on calling both numbers while I drove away. I was about 50 minutes away but made it there in 35. As I was driving, around 95 miles per hour all the way, I was rehearsing the speech I would give to the policeman who might stop me, to convince him to drive along with me all the way and give me a ticket only on arrival.

I was also worried about gaining access: camp was in a university dorm, which was locked at time with no way to get in. I decided I would call 911 a few minutes before my  arrival, so that they would arrive at the same time, and break open the doors if need be.

15 minutes after my departure, MP called and told me that she had succeeded in raising the camp director. A few minutes later, she called again to update me: the camp director was in Kaelan’s room but unable to wake him up. We were on the verge on calling an ambulance. I kept on driving with the pedal to the middle. Finally, right as I arrived, the camp director, after 15 minutes of trying, succeeded in getting Kaelan up and having him take sugar. Clearly, he was so low that it had been very hard to bring him to full consciousness, and to have him understand that he needed sugar.

I asked the camp director to bring him down to my car: I wanted to bring him home that night. By then he was fine. He spent the night at home, and joined camp again early that morning, tired but alive.

This was the first time, after his diagnosis, that we felt that Kaelan really been in danger. It may well be that he would have made it without more sugar: we’ll never know. For sure we did not feel in control that night. 

After that night, we never assumed that you could wake up Kaelan without a person present. We also started building layer upon layer of fallbacks for all eventualities we could think of. Layered planning became second nature to us.