first post

I have created this online journal to document the ins and outs of raising a child with Type 1 Diabetes.  It will probably include observations made by myself and my husband, and most especially, our 9-year-old daughter L.  The purpose is to keep a record of events as they occur (for posterity), as well as provide a place for friends and family to stay current on what's happening in our lives. Things move so quickly; it's been nearly four weeks since her diagnosis and already things are much different than when we were first released from the hospital. I wish I had been making entries in this journal all along, but it's taken me this long to find a way to what we're calling our "new normal".

So, here goes...

L was diagnosed with Type 1 Diabetes (T1D) last month when I took her to her pediatrician for a possible UTI due to frequent urination.  Other symptoms of T1D she had, which we attributed to various other reasons, were excessive thirst, weight loss (10% of her body weight over the course of 4 months), and frequent hunger. Her pediatrician sent us to the ER, where her glucose level was revealed to be 474 (the target range is between 80-120). We were admitted to Children's Hospital for 5 nights to start her on basal-bolus therapy and begin our education in caring for a child with T1D.

We were sent home from the hospital overloaded with information. As one of our nurses said, "It's just like when you were sent home with a newborn, except this time you have a manual!" Indeed, we had been involved in 4 days of intensive training. You know the old joke, "You'll be quizzed on this"?  Well, we were actually quizzed on it! I was glad for all the education, but not every circumstance can be printed in a handbook, so we were still faced with several sticky moments in the first few days home. But we've weathered the bumps along the way (giving too many fast-acting crabs* during soccer practice, eek!) and hope not to make the same mistakes twice.

*Late one evening I composed an email to friends explaining the treatment for low blood sugar, which is administering 5-15 grams of fast-acting carbs, such as Skittles or Starburst.  However, in my haste, I neglected to notice that I had misspelled "carbs". We have called them fast-acting crabs ever since. You gotta find the laughs wherever you can.

So here we are about one month in, and a typical day looks like this:

6:40am - Wake L up for school. Test her glucose (blood sugar) by using a small lancet device to prick her fingertip (no thumbs or pinkies, per her request!), extract a small amount of blood and dab it on a testing strip, which is inserted into an electronic glucose meter, and provides results in 5 seconds. Based on the readout, she will either be treated for high or low blood sugar, or she will require no treatment at all if her glucose is within the target range (80-120).  Low blood sugar is treated by her eating/drinking 15 grams of fast-acting crabs (4 oz of orange juice, 15 Skittles, 3 Starburst, 3 Glucose tablets, etc.). High blood sugar is treated by administering an insulin injection, the amount of which is determined by how high her glucose actually is. There is a calculator involved.

She decides what she wants for breakfast and we must make a separate calculation to determine how much insulin she needs to cover the carbs contained in her meal.  We then combine the carb correction (how much insulin she needs for what she's eating) with the glucose correction (how much insulin she needs to lower her blood sugar to the target range, if any), and then give her one shot containing both amounts. Instead of a syringe and vial, we use an insulin pen, which makes the whole process much easier. This type of insulin will last for 3-5 hours.  Then she gets on the bus and goes to school.

10:00am - She heads to the school nurse's office to get her glucose tested. If the result is between 80-120, then no intervention is required; unless it is a PE day, in which case she will consume 5-15 grams of fast-acting crabs (to give her body fuel for the activity she is about to engage in). The amount she is given is determined by her glucose level. More math! On PE days, she will stop by the nurse's office afterward to get her glucose levels checked again (another finger prick!) to make sure she didn't drop too low while she was exercising. (Physical activity can either make her blood sugar go too high, due to adrenaline, or make it drop too low, if she didn't have enough carbs in her system.)

11:30am - She stops by the nurse's office for another glucose test. At this time, she tells the nurse what she wants for her lunch. They calculate a carb correction based on what she's eating and will add in a glucose correction if her blood sugar is too high. She gets one shot that includes both.

2:50pm - Back to the nurse's office for another glucose test. If her blood sugar is too high, she will receive a glucose correction to get it back to the target range. Also, she's going to have an afternoon snack, so depending on how many carbs that has, she will need to calculate a carb correction, to cover what she eats.  If she doesn't want a snack, or the snack is less than 7 grams of carbs, or her glucose is between 80-120, then she will not need an insulin shot at this time. Are you still with me??

Things get kinda wacky on soccer practice nights, so I'm not even gonna go there. But in a nutshell, it involves checking her glucose before, during (every 30 minutes), and after practice, to determine how many fast-acting crabs she needs to have based on her current blood sugar level, to help give her energy for all the exercise she's involved in.

On non-soccer nights, if she wants an after-school snack that has more than 7 carbs, I check her glucose again to find out how much insulin she needs to cover the carbs in her snack, and if she's above the target range I will calculate how much she needs to get her back on track, and add those amounts together to administer both of the corrections at once. We're all about poking her as little as possible!

6:30-7:00ish - Dinner time. Third verse, same as the first. Check her blood, yadda yadda, calculate insulin amount, blah blah, give her an injection, Bob's yer uncle.

And here comes the worst part of the day: The nightly long-acting insulin shot. This insulin lasts for 24 hours and is given at the same time every night. Unfortunately, it burns. A lot. So while L is perfectly content to get her fingertips poked every few hours for glucose tests, and to have a shot in her arm or thigh before every meal, the nightly shot causes her much distress. In the past few weeks we have tried our best to find the least painful way to get this stuff inside her. We switched from pens back to the syringe and vial we were using during our hospital stay. Also, we've chosen a more juicy part of her body to try to cushion it more effectively. And we also numb the area with ice before the injection.  We are still honing our craft, so to speak, but each day it seems to get slightly easier on her. Unless she's had a rough day or isn't feeling well, in which case, well, all bets are off.

8:00-8:30pm - Bedtime. We check her glucose before she goes to sleep, to make sure she's not too high or low going into overnight. We don't give her an insulin correction at this time if she is too high, because she will typically drop overnight anyway. Which is why, if she's too low before bed, we have to give her (you guessed it!) some fast-acting crabs.

11:00pm - We check her glucose on our way to bed. She usually sleeps through this. If she is below 80, we wake her up and give her some fast-acting crabs. (Idea: wouldn't it be great if they made glucose tablets in the shape of crabs?) If her numbers are within target range, we can sleep through the night. If they are hovering in the low end, then we wake up at 3am and test her again, administering the FAC if necessary. Again, she usually sleeps through the middle of the night testing.

6:40am - Wake up and do it all over again.  Of course, these are just what you would call "guidelines". I haven't even mentioned what happens when her glucose is over 240: we have to test for ketones (which luckily only involves peeing on a test strip) because if ketones build up in her system, her body can go into something called ketoacidosis which means that HER BLOOD TURNS TO ACID AND STARTS EATING THROUGH HER SKIN FROM THE INSIDE OUT (not really, but it's bad). I may have seen one too many episodes of The X-Files.  Any number of things can cause her glucose levels to go that high, including but not limited to: eating too many carbs without administering the proper amount of insulin, having a cold/virus, adrenaline, stress/anxiety/nervousness, puberty(!), and presumably a fistful of others that I don't even know about yet.

Basically, we keep a log book containing every glucose test result and every correction she gets and in this way we can analyze patterns and trends so her docs can decide if her insulin ratio needs to be adjusted (meaning: how many units of insulin she receives per 1 gram of carbs she eats). Since our discharge from the hospital last month, her ratio has already been adjusted several times. Oh yeah, and there's also something called the "honeymoon period", which I began to type out an explanation for but I don't think I was explaining it very well, so I'll just link you to a handy definition here. It's what the Internet is for!

Did you make it through all that technical stuff? Here's the bottom line.  Before her diagnosis, L was having lots of stomachaches, headaches, and severe mood swings. We thought she was suffering from food sensitivities, so we put her on a diet consisting of little or no gluten (wheat), dairy, soy, corn, and many more. We initially saw an improvement but after a couple of months, her condition only worsened. We were at a loss as to what could be done to help her, so when she was diagnosed with T1D, we were scared, but there was also a sense of things clicking into place. And even though she has to have her finger pricked 8-10 times a day, and get at least 5 insulin shots per day, she is still way happier and healthier than she was this time last month. Her stomach/headaches are gone, her moods have leveled out and her anxiety has almost completely disappeared.  We had a really rough summer, because she was feeling so rotten all the time and we didn't know how to deal with it. Rather, we thought we were dealing with it, and it wasn't working. So she was feeling miserable anyway, and the "treatment" was only making her feel worse. But ever since she's been on the insulin, it's like she's gotten her old self back. And not even her old self from the beginning of the year, when this whole thing started. But this kind of older, more mature version, that was growing underneath while the other crazy stuff was happening and we couldn't see her because of how terrible she was feeling.

We're glad to have her back.

Stay tuned here for updates on the good, the bad and the just plain wacky aspects of living with T1D.