Wishing you and yours a happy and healthy 2010!
Thursday, December 31, 2009
Thursday, December 24, 2009
cookies for santa
Happy Christmas!
Monday, December 21, 2009
all full up
Two weeks ago, L got a double ear infection. She had to take Omnicef for 10 days, a thick and milky medicine that caused her to shudder the first time she saw it oozing from the bottle into the cup in front of her. She asked, with complete sincerity, "Don't they have this in shot form?". Oh, ha-ha!, we laughed. Who would have thought, just a few months ago, that our child would be asking to take her medicine intravenously? Diabetes, you make even ear infections humorous!
Last week, L tripped over a stool in her classroom and she put her hands out to break her fall. Instead, she broke her wrist. It's not very severe, only aflesh wound bubble fracture, but her doctor sent us to get a cast just to be on the safe side. At the Orthopedist's office, the doctor reviewed L's chart and said breezily, "Looks like you've got a little bit of diabetes, huh?" Oh, ho-ho!, we chuckled. A little bit, you say? Oh sure, JUST A LITTLE BIT. Oh, diabetes, you make even medical professionals say ridiculous things in response to your mere existence.
Today, the cough that had been plaguing L all weekend was joined by a sore chest and high fever, so off we went to the pediatrician again. The doc did a strep swab (negative) but she said that in listening to L's lungs, she heard some crackling, and since L was complaining of pain while breathing, she diagnosed her with Pneumonia, prescribed Zithromax and sent us off for x-rays. I asked the doc if it would be okay to give L some ibuprofen for her fever. She told me that ibuprofen was a bad idea on account of the whole too-much-can-damage-the-liver-and-really-you-want-to-be-careful-with-that-based-on-the-fact that-having-diabetes-increases-your-chance-of-liver-disease business. And at that point, there was no LOL diabetes, with your hidden dangers of taking over-the-counter pain medication. It seems that at that moment in the exam room, I reached my personal laughing-it-off limit. Because I'd been giving ibuprofen to my kid for two straight weeks because she had severe ear pain and also, you know, a broken wrist! And her other doctors never told me about the "maybe not so much with the ibuprofen, mkay?" thing. And sure, I probably should have figured it out myself but at that moment all I could think was, How was I supposed to know that and why didn't the other doctor mention that and hasn't L already been through enough already this year, why do we have to deal with THIS TOO, I mean, COME ON. A 10 year old can only be such a trooper for so long, you know? 38- and 41-year-olds too, for that matter.
So I learned something today. When your strategy for dealing with challenges is to "laugh at even the most inappropriate of moments", there may come a time when your capacity for yukking it up in the face of unfortunate events becomes maxed out. And when that happens, it's okay. Because you probably just needed a good cry anyway. So your daughter can hug you and thank you for making the doctor's appointment for her and your dad can tell you a stupid joke on the phone to make you laugh and your friends can commiserate via texts and keep you company on the phone while you wait for the pharmacy to fill your prescription and when you get home your husband can hug you for 5 minutes in the kitchen and pretty soon you'll be able to laugh again. Even through the tears.
Last week, L tripped over a stool in her classroom and she put her hands out to break her fall. Instead, she broke her wrist. It's not very severe, only a
Today, the cough that had been plaguing L all weekend was joined by a sore chest and high fever, so off we went to the pediatrician again. The doc did a strep swab (negative) but she said that in listening to L's lungs, she heard some crackling, and since L was complaining of pain while breathing, she diagnosed her with Pneumonia, prescribed Zithromax and sent us off for x-rays. I asked the doc if it would be okay to give L some ibuprofen for her fever. She told me that ibuprofen was a bad idea on account of the whole too-much-can-damage-the-liver-and-really-you-want-to-be-careful-with-that-based-on-the-fact that-having-diabetes-increases-your-chance-of-liver-disease business. And at that point, there was no LOL diabetes, with your hidden dangers of taking over-the-counter pain medication. It seems that at that moment in the exam room, I reached my personal laughing-it-off limit. Because I'd been giving ibuprofen to my kid for two straight weeks because she had severe ear pain and also, you know, a broken wrist! And her other doctors never told me about the "maybe not so much with the ibuprofen, mkay?" thing. And sure, I probably should have figured it out myself but at that moment all I could think was, How was I supposed to know that and why didn't the other doctor mention that and hasn't L already been through enough already this year, why do we have to deal with THIS TOO, I mean, COME ON. A 10 year old can only be such a trooper for so long, you know? 38- and 41-year-olds too, for that matter.
So I learned something today. When your strategy for dealing with challenges is to "laugh at even the most inappropriate of moments", there may come a time when your capacity for yukking it up in the face of unfortunate events becomes maxed out. And when that happens, it's okay. Because you probably just needed a good cry anyway. So your daughter can hug you and thank you for making the doctor's appointment for her and your dad can tell you a stupid joke on the phone to make you laugh and your friends can commiserate via texts and keep you company on the phone while you wait for the pharmacy to fill your prescription and when you get home your husband can hug you for 5 minutes in the kitchen and pretty soon you'll be able to laugh again. Even through the tears.
Saturday, December 5, 2009
three months in
We had a meeting with L's teacher and the school nurse last Thursday. It's been three months since diagnosis and L had some ideas about how she wants to manage things at school. She is annoyed about missing so much time in class due to going to the nurse's office three times a day. Since she started testing her own blood glucose at home last month, her dad and I are only responsible for testing her about 10% of the time (usually when she's tired or feels like she has high or low blood sugar). So she decided she was ready for more responsibility at school as well.
Our friends from Germany gave L a small backpack a couple of months ago, and it is perfect for carrying around her brand new glucose monitor kit (We found a blue one! School colors!), as well as the all-important fast-acting crabs. So we had a little sit-down with her teacher and the nurse and reassessed how things will be done at school. L was very eager to take on more responsibility. The first two days were a fantastic start to the next phase of managing the beetski/bestki. On Friday afternoon when I picked L up from school, her teacher mentioned that L was already so proficient at testing herself promptly and discreetly that she didn't even realize she was doing it until after the fact.
Last night there was a school fundraiser at a local bookstore. It's a chance for parents to do some holiday shopping, with a portion of the proceeds going to the school. It's also a chance for the students to run around the store in packs, jabbing each other with balloon swords and jumping out from behind bookshelves. As L ran off with her little posse and her tiny red backpack slung over her shoulder, I took a seat in the cafe, our designated meeting point. I spent the next hour trying my best to act like I was totally cool with her being out of my sight for that long. Whenever there was an announcement over the store speakers, I strained to hear if they were saying my name..."Would the incompetent mother of the diabetic redhead please come to the front register. She told you she would be okay but clearly you should not have listened to her!"
Of course everything was fine and she bounced up to me when it was time to go and complained that she wanted to stay longer and we went to dinner and the restaurant actually had the carb info for the meal she ordered, so that was pretty awesome. Then she and her friend went to order some ice cream for dessert but they only had the nutritional info for their shakes, so the person behind the counter went through the recipe for the shakes and subtracted all the other ingredients (which she *did* know the carb counts for) and measured how many ounces a scoop of ice cream had and was able to give us a pretty accurate carb estimate. So, friends, if you ever go to Potbelly and order a scoop of chocolate ice cream, that's gonna be 33 grams of carbs. But if you want it in a cone, you're on your own!
All in all, a good week. Roll on December...
Our friends from Germany gave L a small backpack a couple of months ago, and it is perfect for carrying around her brand new glucose monitor kit (We found a blue one! School colors!), as well as the all-important fast-acting crabs. So we had a little sit-down with her teacher and the nurse and reassessed how things will be done at school. L was very eager to take on more responsibility. The first two days were a fantastic start to the next phase of managing the beetski/bestki. On Friday afternoon when I picked L up from school, her teacher mentioned that L was already so proficient at testing herself promptly and discreetly that she didn't even realize she was doing it until after the fact.
Last night there was a school fundraiser at a local bookstore. It's a chance for parents to do some holiday shopping, with a portion of the proceeds going to the school. It's also a chance for the students to run around the store in packs, jabbing each other with balloon swords and jumping out from behind bookshelves. As L ran off with her little posse and her tiny red backpack slung over her shoulder, I took a seat in the cafe, our designated meeting point. I spent the next hour trying my best to act like I was totally cool with her being out of my sight for that long. Whenever there was an announcement over the store speakers, I strained to hear if they were saying my name..."Would the incompetent mother of the diabetic redhead please come to the front register. She told you she would be okay but clearly you should not have listened to her!"
Of course everything was fine and she bounced up to me when it was time to go and complained that she wanted to stay longer and we went to dinner and the restaurant actually had the carb info for the meal she ordered, so that was pretty awesome. Then she and her friend went to order some ice cream for dessert but they only had the nutritional info for their shakes, so the person behind the counter went through the recipe for the shakes and subtracted all the other ingredients (which she *did* know the carb counts for) and measured how many ounces a scoop of ice cream had and was able to give us a pretty accurate carb estimate. So, friends, if you ever go to Potbelly and order a scoop of chocolate ice cream, that's gonna be 33 grams of carbs. But if you want it in a cone, you're on your own!
All in all, a good week. Roll on December...
Thursday, November 26, 2009
thanks
As I sit down to make this post, I can hear L and her dad in the kitchen, pulling all the innards from the turkey to prepare it to be cooked. She just exclaimed, I THINK I FOUND THE PANCREAS! :D
Below you will find a photo of a craft project L and I worked on in school earlier this week. She wrote one thing she is thankful for on each leaf, and then glued them all to the tree. Some of her choices made me smile, and I thought you might get a kick out of it too.
So here's hoping you have a very happy Thanksgiving. We are very grateful to have you all in our lives. As well as fast-acting crabs, obviously.
Below you will find a photo of a craft project L and I worked on in school earlier this week. She wrote one thing she is thankful for on each leaf, and then glued them all to the tree. Some of her choices made me smile, and I thought you might get a kick out of it too.
So here's hoping you have a very happy Thanksgiving. We are very grateful to have you all in our lives. As well as fast-acting crabs, obviously.
Wednesday, November 11, 2009
two firsts
Long time, no type! That must mean things are going well. Indeed, they are. I wanted to pop in quickly to mention two milestones we passed in recent weeks. First of all, there was L's first Halloween with the beetski/betski. It went so smoothly as to almost pass without comment. We checked her glucose before she left the house for trick-or-treating, and while she was out and felt like she might have a low blood glucose, she just dug into her bag and found some fast-acting crabs. Everyone knows it's not about how much candy you can eat in one night anyway; it's more about the most profitable trades you can make with your friend's older sister and her posse. As a side note, the Children's Hospital Diabetes Clinic provided a list of the most common fun-size candies and their respective carb counts, since they frequently are not marked on the individual pieces. Rock on, Children's Hospital!
The second big event in recent weeks was that L turned 10. TEN I SAY! She woke up that morning and said, "Hey, I think I should start testing my own blood glucose". And so she did. And from then on, more times than not each day, she will be the one to set up the lancet device, sanitize her finger, prick it with the needle, and squeeze the blood onto the test strip. Rock on, you ten-year-old, you!
As far as those glucose levels are going, the story is pretty good at the moment. It seems like we have finally arrived at the appropriate calculation ratios to keep her pretty close to the target range. We still have our fair share of highs and lows, but that happens on a much less frequent basis, and we are learning not to freak out as much whenever we see those really out of whack numbers. L had her 2 month follow-up appointment at the Clinic recently and we were relieved to learn that her A1C level (which had been 14.25% upon her admission to Children's Hospital, and 12% at her one month follow-up) was down to a very respectable 8%. Rock on, much-improved A1C level!! [What is an A1C Level?]
And while I have you here, I'd like to just take a moment on this Veteran's Day to recognize all of our family members who have served our country. Thank you Poppo, Grandpa, Dad, John, Uncle Tim, Uncle John, Anthony, Pat and Damon.
The second big event in recent weeks was that L turned 10. TEN I SAY! She woke up that morning and said, "Hey, I think I should start testing my own blood glucose". And so she did. And from then on, more times than not each day, she will be the one to set up the lancet device, sanitize her finger, prick it with the needle, and squeeze the blood onto the test strip. Rock on, you ten-year-old, you!
As far as those glucose levels are going, the story is pretty good at the moment. It seems like we have finally arrived at the appropriate calculation ratios to keep her pretty close to the target range. We still have our fair share of highs and lows, but that happens on a much less frequent basis, and we are learning not to freak out as much whenever we see those really out of whack numbers. L had her 2 month follow-up appointment at the Clinic recently and we were relieved to learn that her A1C level (which had been 14.25% upon her admission to Children's Hospital, and 12% at her one month follow-up) was down to a very respectable 8%. Rock on, much-improved A1C level!! [What is an A1C Level?]
And while I have you here, I'd like to just take a moment on this Veteran's Day to recognize all of our family members who have served our country. Thank you Poppo, Grandpa, Dad, John, Uncle Tim, Uncle John, Anthony, Pat and Damon.
Saturday, October 17, 2009
7 weeks out
As Gary Gnu used to say, No gnews is good gnews, which is why I haven't updated in a while. Things are still rolling along pretty smoothly. We've nearly perfected the nightly shot routine that was causing such difficulty before, and we no longer have to check her blood glucose in the middle of the night, so things have settled into something resembling a routine. Two awesome things that happened over the past week are that L got a 100% on a math test, and she scored a goal in her soccer game last Sunday.
Here are two snapshots from the first couple of weeks after diagnosis that I wanted to post here for your enjoyment.
***
10 September 2009
10:50pm
I give L a glucose test and she sleeps right through it. Her result is lower than the target range, so I wake her up to take some fast-acting crabs. She is half-propped up in the low light, groggily munching on candy. I say to her, softly: "Sorry I had to wake you up to make you eat Skittles, but your blood sugar is 64." Without missing a beat, she responds: "It's okay...it's better than going into a MINI-COMA!" and she says the last two words with a flourish and a smile and a huge thumbs up. I fall out laughing and grab the insulin log book to record everything word for word because, come ON.
***
My next anecdote didn't happen in a single moment in time, rather it's something she's been building and adding to over the course of a few weeks. When you remove the cap for an insulin pen, it makes a very distinctive sound, much like that of a sword being unsheathed. SCHWING! She made the connection to superheroes and decided that there should be a superhero called Insulin Woman. She would have two pancreases (pancreii?), one with Type 1 Diabetes and one with Type 2. They are each connected by a tube to an insulin pen, that would be attached to her tool belt, one pen on each hip. When Insulin Woman sees evil people, she schwings out the pen that is connected to the pancreas that still makes insulin (the one with Type 2) and shoots the insulin into the enemy's mouth, which makes them have low blood sugar, and then they go into a mini-coma (if they don't have fast-acting crabs). Sometimes she pulls out the wrong pen and then she says OOPS! WRONG ONE, then puts it back and schwings out the other one. Her superhero outfit would feature an animated Capital I in the middle of her chest. The long part of the I would be drawn in the shape of a person, and the top and bottom lines of the I would be made from insulin pens. Can't you just see it now?
***
That's all for now, folks! Thanks so much for your comments and emails. We all read them together and we appreciate your support. Until next time...
Here are two snapshots from the first couple of weeks after diagnosis that I wanted to post here for your enjoyment.
10 September 2009
10:50pm
I give L a glucose test and she sleeps right through it. Her result is lower than the target range, so I wake her up to take some fast-acting crabs. She is half-propped up in the low light, groggily munching on candy. I say to her, softly: "Sorry I had to wake you up to make you eat Skittles, but your blood sugar is 64." Without missing a beat, she responds: "It's okay...it's better than going into a MINI-COMA!" and she says the last two words with a flourish and a smile and a huge thumbs up. I fall out laughing and grab the insulin log book to record everything word for word because, come ON.
My next anecdote didn't happen in a single moment in time, rather it's something she's been building and adding to over the course of a few weeks. When you remove the cap for an insulin pen, it makes a very distinctive sound, much like that of a sword being unsheathed. SCHWING! She made the connection to superheroes and decided that there should be a superhero called Insulin Woman. She would have two pancreases (pancreii?), one with Type 1 Diabetes and one with Type 2. They are each connected by a tube to an insulin pen, that would be attached to her tool belt, one pen on each hip. When Insulin Woman sees evil people, she schwings out the pen that is connected to the pancreas that still makes insulin (the one with Type 2) and shoots the insulin into the enemy's mouth, which makes them have low blood sugar, and then they go into a mini-coma (if they don't have fast-acting crabs). Sometimes she pulls out the wrong pen and then she says OOPS! WRONG ONE, then puts it back and schwings out the other one. Her superhero outfit would feature an animated Capital I in the middle of her chest. The long part of the I would be drawn in the shape of a person, and the top and bottom lines of the I would be made from insulin pens. Can't you just see it now?
That's all for now, folks! Thanks so much for your comments and emails. We all read them together and we appreciate your support. Until next time...
Saturday, September 26, 2009
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.
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.
Friday, September 25, 2009
beetski/betski explained
L's favorite character on the tv show The Simpsons is Ralph Wiggum. His catchphrase is, "I'm Special!", which he delivers with a high-pitched voice filled with wonder. He frequently mispronounces words and in one episode he announced, "I'm LEARNDING!".
When we found ourselves in the Emergency Room with the doctors telling us we'd have to be admitted to Children's Hospital for a few days to receive education on dealing with Type 1 Diabetes, in order to get L to laugh I said, in my best Ralph Wiggum voice, "We're LEARNDING! About DIABETSKI!" It worked. :) So that's what we call it now. However, we cannot agree on the pronunciation.
In the beginning, I pronounced it as if it rhymes with Wayne Gretzky. DiaBETski. But when I texted the new term to my friend Courtney, she replied with, "DiaBEETski! Hilarious!" I immediately agreed with her that Beetski was funnier than Betski. So did L, initially. But after a short period of reflection (read: 1 minute), she decided that Betski was far more comedically pleasing.
My argument: Beetski is inherently funnier, because of the double EE sound. DiabEEtskEE. Comedy gold!
L's argument: Betski makes more sense in the world of Ralph Wiggum. Because he is mispronouncing the word not only once, but twice. Which, in her estimation, makes Betski twice as funny as Beetski.
So I've been saying Beetski and she's been saying Betski and each of us is sure we are going to wear the other one down. Watch this space to see if this struggle for the ages is ever resolved.
When we found ourselves in the Emergency Room with the doctors telling us we'd have to be admitted to Children's Hospital for a few days to receive education on dealing with Type 1 Diabetes, in order to get L to laugh I said, in my best Ralph Wiggum voice, "We're LEARNDING! About DIABETSKI!" It worked. :) So that's what we call it now. However, we cannot agree on the pronunciation.
In the beginning, I pronounced it as if it rhymes with Wayne Gretzky. DiaBETski. But when I texted the new term to my friend Courtney, she replied with, "DiaBEETski! Hilarious!" I immediately agreed with her that Beetski was funnier than Betski. So did L, initially. But after a short period of reflection (read: 1 minute), she decided that Betski was far more comedically pleasing.
My argument: Beetski is inherently funnier, because of the double EE sound. DiabEEtskEE. Comedy gold!
L's argument: Betski makes more sense in the world of Ralph Wiggum. Because he is mispronouncing the word not only once, but twice. Which, in her estimation, makes Betski twice as funny as Beetski.
So I've been saying Beetski and she's been saying Betski and each of us is sure we are going to wear the other one down. Watch this space to see if this struggle for the ages is ever resolved.
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