Tuesday, February 22, 2011

The wedding

Last weekend was wonderful. My oldest child, and only boy, was married to his true love in a beautiful wedding in Washington. We all had an amazing time meeting the family of Devon's bride and preparing for the big day. The wedding was spectacular! The bride was the most gorgeous bride in the history of weddings, and my son was ever the handsome groom. My youngest, Sarah, sang beautifully during the ceremony.

As always, diabetes traveled with us, and provided a few challenges along the way. We made it to Washington on Friday morning only to open Sarah's diabetes kit (a small backpack) to find a can of apple juice had spilled. Everything was juiced, including the meter remote for her insulin pump. We ended up using a spare pump during the rest of the trip - which made things interesting as I had to reach under a full length dress several times during the wedding reception to check her pump and provide insulin.

We had an 11am appointment on Friday to get our fingers and toes beautified and have a chance to finally meet the bride's family in person. This started (and ended) wonderfully and we had a great time socializing with our new family. Sarah loved the massage chair she sat in for her pedicure.

During the manicure, diabetes decided to give us a little run for our money, because clearly it was WAY too much to ask to keep things simple. Sarah was doing great, keeping her wet toes still while a french manicure was applied to her fingers. Suddenly, and with no warning, she turned to me and began to wail that her stomach hurt. The wail was what got me, it wasn't anything like the sound Sarah usually makes when crying. I immediately directed her dad to check her bloodsugar and while he was in the process of poking her finger, she passed out - which pretty much gave us all a heart attack. Her auntie was right there with a tube of cake icing and began squeezing it into her mouth. I think she was probably out 10-20 seconds, but it seemed much longer. She began to wake, pale and sweaty, and auntie began shoveling cookies into her mouth to bring her blood sugar up. This was our first serious hypoglycemic event in the eleven months since she was diagnosed.

From left: Amanda, Michelle, Sarah, Ashley - Sarah is the picture of health only a few hours after passing out from hypoglycemia.
The rest of the weekend was wonderful. Sarah recovered almost immediately (carbs fix everything) and had a great afternoon and evening. We hosted the rehearsal dinner that evening and Sarah was quite the storyteller, doing her best to get her brother in as much trouble as possible with the new inlaws. Fortunately for Devon, Amanda (my 19 year old daughter) is the one with the best stories, but she held back. We also got to hear some great stories about our new daughter-in-law - including a real life "Get back on that horse!" story which still makes me giggle.

The wedding day came and I was a bit nervous. Sarah had a lot of responsibility. As a junior bridesmaid, she'd obviously walk down the aisle and stand during the ceremony. Additionally, she had to sing a song mid ceremony. We arrived at the church about two hours before the wedding so the photographer could take pictures. Uh oh. It's freezing outside and that's where the pictures are being taken - 1st potential bloodsugar nightmare, serious change in temperature, shivering, stress. So I poked Sarah about every fifteen minutes during the two hours before the wedding and kept having her take little bits of food to keep her sugar up. 15 minutes before the ceremony she was still only at 100, and I was very nervous about having a repeat performance of the manicure incident during the ceremony, so I forced her to eat a whole banana, hoping (for a change) for the crazy banana spike.
Amanda and Sarah in their beautiful bridesmaids dresses

The ceremony was amazing. My little boy married his love. And Sarah made it through without a hitch. She enjoyed a big cookie at the dessert reception, then danced the night away.

Dancing the night away
I had my first chance to dance with my handsome son, something I hadn't done since he was a little boy. It was amazing! And at the end we kissed the beautiful couple, then blew bubbles at them as they left the hall for the limo that would take them to the beginning of the rest of their lives together.

Wednesday, February 2, 2011

Ice cream before sleep means no counting sheep

When I was a teenager, I loved staying up all night watching Star Wars, writing the greatest novel (that's never been finished or published), reading, or talking on the phone (yeah, I totally had a spare phone I used to pull out when I got grounded and mom took one away. Sorry mom, too late to ground me now!!!). Three in the morning - ha! No problem... I was just getting started. I laughed at the newscaster who used to ask every night, "it's ten O'clock, do you know where your children are"? I didn't have children. I had books, movies, friends, and homework that always managed to get done on the bus ride to school.

Fast forward twenty-something years...

Where the heck did that carefree kid go? Oh yeah, she got all growed up and responsibilified. She has to get up at 6am and go to work, and she can't go to bed because she gave the child ice cream five hours ago.

Yes, if you've made it this far you have again entered the world of type 1 diabetes, a disease that affects about one of every 400 to 600 kids. A disease that somehow hasn't gotten a whole lot of attention. I wonder why this is? My best guess is that we parents do such a great job of managing this disease, that it doesn't seem like a big deal to the rest of the public. But as much as I hate to mention the serious downside of type 1 diabetes, I think it needs to be said. Type 1 diabetes is a deadly disease. Without intensive and constant treatment, the outcome is death. Until the advent of insulin in 1922, the average lifespan of a type 1 diabetic was about two years from diagnosis. Sadly, far too many type 1 diabetics still die young.

In fact, not long ago I met a woman in the waiting room for Sarah's Endocrinology appointment. She was there with her 10 year old granddaughter, who had type 1 diabetes. The woman was in tears. Why? Because she is now raising her diabetic granddaughter, because the little girl's mom died in her early 30's of complications from type 1 diabetes.

Yeah, it's that serious.

It's absolutely critical that Sarah stick to a strict regime of testing, counting carbohydrates, and delivering insulin. Here's what a typical Sarah day looks like:

6:30am - prick finger and test blood sugar - count the grams of carbohydrates in each part of her breakfast, enter the data into her insulin pump, confirm insulin injected, eat breakfast.

10:00am - repeat for snack

12:30pm - repeat for lunch

2:00pm - repeat for afternoon snack

5:00pm - repeat for dinner

7:00pm - prick finger and test blood sugar during/after activities - maybe have an evening snack

-- Every third day we load a new cartridge of insulin and use a really big needle to shoot a small tube into her tummy. Fun!

9:00pm - prick finger and test blood sugar before bedtime.

So let's see... According to this, my daughter pokes about 8 holes in her fingers each day. Might I remind you, she only has ten fingers, and 2-3 of them don't like to bleed, so we reuse the bleeders a lot.

And that brings me to the reason I'm writing this entry at 10:30pm instead of snoring. Tonight we splurged a little and let Sarah have ice cream for dessert around 5:30pm, knowing that ice cream always makes her blood sugar spike. I was actually kind of hoping that because we had dessert reasonably early, we'd get the spike out of the way before bedtime. But no... She tested at 9:00 and her blood sugar was 240. Her goal is 105-135, and I usually prefer her to be over 120 (but under 160) when she goes to bed.

So, because she was 240 Seymour ordered a correction (Seymour is the name of her pump - the name makes a lot more sense if you've watched Little Shop of Horrors) of 0.80 units of insulin. But before I can sleep, I need to confirm that:

  1. Her blood sugar didn't plummet to the danger zone (hey, it happens!)
  2. Her blood sugar didn't continue to rise (yep, this happens too!)
  3. Her blood sugar is in the normal bedtime range 

I vote for door number 3!!! Who's with me?

So now I creep into her bedroom and turn on the light, hoping she doesn't wake. I insert a new test strip into her meter. I prime the lancing device, then dig under the covers for the nearest available finger. I gently squeeze the finger, bringing the blood to the surface. I push the lancing device against her finger and push the button, hoping I'll get enough blood so I don't have to do it all over again.

And the verdict is??? Dang it, door number 2. She's only down to 228. Seymour orders another correction, and now my 10:30 bedtime is pushed to 11:30.

Does anyone really wonder why I chug down so much coffee???

Tuesday, February 1, 2011

The quarterly report card

Tomorrow is Sarah's appointment in the Children's Specialties clinic at Kaiser. She'll see a nurse, doctor (Endocrinologist), nutritionist, child-life specialist, and a social worker. The whole appointment takes about three hours. They talk to us about diabetes management, read through her bloodsugar readings for the last three months - and give us the much anticipated A1C result.

The A1C is our report card. The A1C measures the amount of glucose that has built up in her red blood cells over about 90 days, so it gives us a fairly accurate view of her average bloodsugar.

A "normal" A1C is between 4.0-6.0 (though the Mayo clinic considers an A1C of 5.7 or higher pre-diabetes). Most diabetics aim for an A1C under 7.0, but this is not always easy to achieve. Sarah's last A1C was 6.5 - which is pretty good. But at the time she was having quite a few lows, so our goal this time was to keep the A1C under 7.0, while significantly reducing the number of lows she has.

Pre-game statistics

In the week prior to her last appointment (November 2):
4 - bg readings below 70
114 - Average bg
37 - Average carbohydrates in a meal

This past week:
0 - bg readings below 70 (her lowest was 77)
142 - Average bg
35 - Average carbohydrates in a meal

As you can see, Sarah hasn't had any serious low bloodsugars in the last week - this is a very good thing because low bloodsugar is dangerous. Her average is a little higher than I'd like to see, as her goal is 120. However, this number is somewhat inflated because it only takes into account the tests we perform, and I often have Sarah test an hour or so after a treat just to see where she's at and if she's going to need a correction. If I only tested at mealtimes, this would be lower.

Why do we care so much about her A1C? A good A1C significantly reduces the risk of future medical complications. "the Diabetes Control and Complications Trial (DCCT), ... found that for every one percentage point a patient reduces their A1C they lower their risk of microvascular complications 37%. The study also found that keeping blood sugar levels as close to normal as possible slowed the progression of diabetes-related eye, kidney, and nerve diseases."

So it's not just about keeping bloodsugar from becoming dangerously high or dangerously low. We strive to keep her bloodsugar as close to "normal" as possible. In a Type 1 diabetic, bloodsugar can swing wildly. A small snack, such as an apple juice or handful of crackers, can drive her bloodsugar up well over 100 points. Once I gave Sarah a bag of fishy crackers when her bloodsugar was around 70 - and an hour later she was near 250! Can you imagine? And she feels every swing in bloodsugar. She might feel shaky and sweaty at 60, and develop a bad headache over 250. So we walk a fine line, balancing carbohydrates and protein carefully to try to keep her bloodsugar as level as possible.

And every three months we walk into the Endocrinologists office and await our report card.

Edited on 2/2/2011 - The result? 6.5