First, assemble your crew. You’re going to need an admin assistant, a dietitian, a medical assistant…. Just kidding. You’re all those things now.
Get organized. It is so frustrating how much there is to juggle in regards to the insurance forms, prescriptions, ordering refills (when does your insurance authorize the next refill?), and yet another supplier- the pump company. You may not need that (pump info) at first, but you may find you’re adding that to the list before you even know what hit you. If you have a superstar organizer in your family, delegate! But if you’re like me, and your family consists of you and your baby, then just be sure to leave at least the tiniest amount of time for this. It’s important.
Stockpile. Along a similar vein as above, be organized. Know your supplies and how much you have of them. So many supplies. Blood glucose meter, test strips, lancing devices, lancets, insulin- in some cases more than one type of insulin, ketone meter, ketone test strips ( see Ketones- how high can you go? ) and then the endless pump supplies…. And batteries! For your pump and the meter. And an extra meter. The first mistake I made in management of my supplies was to not reorder test strips in time. I use a mail order pharmacy, and I was not getting a straight answer from them or my insurance company on when I could reorder and somehow got dangerously low. I check this kid over ten times a day. I can’t run out. But I did. I started using extra meters gleaned from doctor’s visits (most came with a little ten strip supply). I could always go down to the neighborhood pharmacy and pay for it out of pocket. That’s too expensive of a mistake to make. Luckily, I pieced together enough supplies to make it until the big shipment.
Keep a log book. No, throw out your log book and get a good-sized monthly planner that has plenty of space to write when your kid woke up, what his blood sugar was, how much insulin you gave for breakfast, what he was the next time you checked him, and so on. It would be really helpful at first if you also wrote down the types of food you gave him. You’ll find that milk and pasta have way different absorption times. That’s just one example. Write it down. And try to note times of higher activity. This may sound pretty tedious, but don’t worry, soon you’ll see patterns and won’t need to write most, if any, of it down. You will have every blood sugar check, timepoint of insulin administration, number and type of carbohydrate consumed, and minutes running around the park filed away every day.
Read, read, read. Books on Diabetes. Websites. Blogs. SUPPORT GROUPS! I joined an online support group for parents of type 1 kids in the Bay Area of California- Brave Buddies. This group has been a life-saver. There have been times I have posted a question and gotten plenty of responses way before our diabetes educators were able to get back to me. Any time of day or night. These parents don’t sleep. And read books on counting carbs. Websites that have carb counts- like Calorieking.com. Oh yeah, and while we’re on the subject of carbs, get a scale. I had a scale that in a previous life was used for measuring ingredients for bread (weight is so much more precise than measuring cups, bakers!) and it works just fine. I used to weigh or measure most things, but as in the case of the log book, soon it became second nature to estimate carb counts.
Eat something. Yes, you. I was running on fumes the first few months (which is definitely not in my nature- I used to think about what I wanted for dinner while eating lunch!). I realized the danger of it one day when I had taken Ben to a research study visit in San Francisco. It was an asthma prevention study of all things. At any rate, before the study visit, we stopped at Ike’s in the Castro, and I picked up the second best sandwich I’ve had in my entire life. I wolfed it down outside the hospital building the few minutes I had before the visit. It may have been the first bit of solid food my body had dealt with in a while. Half-way though the study visit, I had some weird vasovagal response and almost passed out. Meanwhile I was realizing it had been a while before I had checked the boy’s blood sugar, and how was I going to do that when I couldn’t stand up, and …..fade to …almost black. Snapped back before passing out, but I learned my lesson.
Speaking of mistakes. You will make them. Learn from them and move on. I’ve had plenty of doozies where I thought afterwards, holy shit, I can’t believe I didn’t kill him. I’ll devote a separate post to those times.
Get tested. Get everyone tested. Congratulations. You and yours now qualify for a research study in which you can get your blood tested for antibodies that would indicate you (or another child of yours or a nephew or —) have a risk for developing Type 1 Diabetes. Check out Trialnet . The goal of this research is to prevent, delay, and reverse the progression of type 1 diabetes. It’s worth the blood draw.
ENJOY YOUR BABY! In the first few days after my son’s diagnosis, I was most saddened by what I perceived as a loss of the little things that are so sweet about the little guys. I felt too overwhelmed to even think about any “firsts” that day or cute expressions…or anything really. That goes away!! It gets better! You can manage diabetes and have your baby back.