After over 10 years of parenting a child with Type 1 Diabetes, it's time to share some stories. Please realize that what you'll read here is not intended as medical advice; it's just the ramblings of a sleep-deprived mom. Always consult your medical team about your treatment options, but stop here from time to time for a bit of perspective.
A couple of weeks ago, my daughter found herself explaining the need to keep her pump attached somewhere under her costume for the school musical. It brought to mind this post from a few years ago:
My daughter had a softball “workout” a couple of weeks ago.All of the girls playing this spring were summoned to demonstrate their skills at batting, catching pop-ups, and fieldinggrounders.Groups of 5 at a time entered the gym to be evaluated by at least that many adults.Based on their skills, the girls were sorted into evenly-matched teams.
Fielding grounders is my daughter’s best skill.She can hit when she gets in a groove, but given the amount of snow on the ground, she hasn’t swung a bat since October sometime.And she’ll readily admit that she can’t catch a pop-up beach ball, let alone softball.So she was excited to demonstrate her infield skills.
I was not allowed in the room, but as she tells the story, here’s what happened:
Someone bounced a grounder to her.She was ready, leaned down, and got it.Then her pump fell out of her pocket.She threw to first, grabbed the pump and stuffed it deeper in the pocket of her sweats.From behind her, comes the coach’s voice.“Can I hold that for you?”
Diabetes has been part of my daughter’s life since she was 13 months old.And it’s always been interesting to watch how she responds to people responding to it.She tends to be very matter-of-fact about the whole thing, and is developing an increasing vocabulary to answer questions and to respond to potentially awkward situations.
“Um…well…actually, it’s attached to me.So I don’t think that would work too well, but thank you.”
I couldn’t have said it better.
Of course, on the way home, we became hysterical envisioning her fielding grounders while the coach tried to hold the pump.
Volleyball started this week. We tried to hearken back to volleyball a year ago to figure out how to handle it diabetes-wise. We could recall very little.
We did know she needed to eat dinner before the 6 p.m. start time, not wait until after. At 5, her blood sugar was on the high end, around 240. Dinner was a chicken pot pie with biscuit topping. I don't usually make this version anymore because there seemed to be no way to bolus the biscuit part that worked. But I'm still recovering from my accident of 2 weeks ago, and looking for anything soft to make that we can all enjoy. So the ease of making one meal all of us could eat won out.
We bolused dinner and corrected the bg, assuming the pot pie topping would be hanging around helpfully during volleyball. She poured a bottle of G2 - the low carb gatorade - to bring to practice. Sipping a few carbs of this at each break seemed helpful last year, as best as we could remember.
After practice, at 7:30, her bg was 142.
Frozen treat season started in earnest this week too. It was a friend's birthday, so her mom took the girls for ice cream or italian ice after practice. My daughter bolused for a cup of root beer italian ice at a place we've been before.
At 9:45 as she finally crawled into bed after a shower, finishing homework and regrouping for the next day, her blood sugar was 115. Which seemed great.
At 10:20, I heard footsteps. "I just checked and I'm 34."
She drank eight ounces of juice (double her standard amount for a bg of 50-60). We cuddled on the couch for the end of the baseball game. She checked again. 56. Better. After another four ounces of juice she crawled back into bed around 10:45. Now may be a good time to note that when the dexcom sensor came out on Tuesday we decided she could go a few days before starting a new one.
I stayed up, checking every 15-20 minutes. The next check was 82. I realized we should have set a temp basal as soon as 38 read out on the meter screen, but did so belatedly hoping that would preempt the need for more juice. Next check: 78. I waited it out, hoping for a turn around, not wanting to overdo. Fifteen minutes later: 65. Another juice box. A few more pages of my book later: 116. Maybe we were finally out of the woods. But for some reason I didn't trust it, so I stayed up. Twenty minutes later? 72. I reset the temp a little lower for another hour and went back to the sofa for another chapter. 87. I finished my book. One more check: 95, and my husband's alarm was set for 45 minutes from then. I couldn't keep my eyes open any longer.
A quick prayer to God, and the diabetes gods - just to cover all the bases - and I crashed.
By the time my husband checked, she was up to the 160's and stayed there until morning.
Lessons learned? Volleyball catches up with her. (This lesson sounds familiar in retrospect). This establishment's italian ice seems to have fewer carbs than the standard calorie king estimate. (This lesson also sounds familiar). She probably should have stayed up until she hit a blood sugar of at least 70-ish and followed the juice with some peanut butter crackers. (This lesson was taught to us while still in the hospital 12+ years ago).
Last lesson? If you're going to have a night like last night, it should always precede a beautiful giant-iced-coffee-worthy day like today.
I hate playing the 'diabetes card.' Saying, 'but she has diabetes,' goes against my whole, 'diabetes can't stop you from doing anything' mantra. Also, invoking diabetes has the secondary problem of necessitating a longer, more complicated conversation than I ever want to have. We are often able to problem-solve diabetes stumbling blocks so that my daughter can participate fully in things without making a big deal about them. But sometimes that becomes impossible.
Before the weekend performances of the school musical I received an e-mail stating that all cell phones would be collected when the kids arrived at school an hour before curtain. They would be kept 'in a safe place,' and made available 'in case of emergency.' This was happening at dress rehearsals as well. Sometimes my daughter turned hers in. Sometimes, like on days of crazy diabetes issues, she claimed she didn't have it but really kept it with her. The collection was kept in clear ziploc bags on an accessible table, so she knew she could reclaim hers and use it in an emergency, answering questions afterwards if needed.
For the show, however, I had to say something. We have a system of her texting me her numbers a few minutes before curtain time and at intermission. We try even harder than usual on show days to intercept any problems early on, and to keep things on an even keel. A fuzzy brained high could lead to forgotten lines. A low on stage has all kinds of potential ramifications. So we've got a system of checks and balances in place.
I contacted the director and plead my case through a (probably) over-explanatory e-mail. Not only did she need to keep her phone, I explained, she had to use it at least twice backstage. I hoped that would not be a problem. The director's response?
"Of course she can keep it!"
Which is what I assumed the response would be from anyone with an ounce of decency and common sense.
But I still didn't like having to ask. Playing the 'diabetes card' invariably puts a qualifier on 'diabetes can't stop you.' It says that she needs some sort of special treatment to keep her safe. Which is sometimes hard to ask for or to admit. But sometimes it makes sense.
My grandmother was clumsy. My mother was clumsy. I have inherited this gene. And as I get older, the consequences become more dire. Last Wednesday's incident leads me to consider living the remainder of my days in a hamster bubble.
I was leaving a meeting at my church and walking to my car with something in each hand when I tripped and found myself airborne and parallel to the sidewalk. With my hands full, and not as much reaction time as the slow motion vision of the incident going on in my head would suggest, my chin was the first thing to hit the sidewalk. As I started to try to get up, I realized my chin was bleeding heavily and that my mouth and jaw had several significant injuries.
Thankfully, someone I knew came along who had been at the meeting with me. He walked me back into the building where a friend helped me clean up and then took me to urgent care. No stitches were needed, and x-rays showed no broken bones. Follow-up with the dentist on Thursday showed that a disk which cushions the bones around the intersection of the right side of my jaw was intensely swollen and inflamed, making it impossible to open my mouth more than a crack. I am still unable to chew, and brushing my teeth is torture, but with rest and a variety of treatments the problem should continue to resolve over the coming weeks. Then the dentist will be able to fix the broken teeth.
I'm guessing you're feeling badly for me but wondering what this has to do with diabetes. Read on:
As I lay on my sofa Thursday morning, everything hurting, the phone rang. It was my husband calling from work, who had conferenced in my daughter calling from the nurse's office. In tears. "I'm 385 and I was 300 an hour ago and corrected it and we're doing jump rope for heart today so I've been jumping rope and my blood sugar won't go down and I didn't want to bother you and I know you're not supposed to talk, but I don't know what to do and the site looks pretty yucky and .... what should I do???"
I took a deep breath (one of us had to) and mumbled through clenched teeth, "Sounds like it's probably the site. Do you think you can do it yourself? I'll come down there if you really need me to but if you think you can do it, now's the time to try."
"I think I can."
"Are you sure?"
"O.k. Make sure the nurse sits with you and watches. Call me if you need to. It's o.k. And if I need to come down there, I absolutely will. But I definitely think you can do it."
When she did her first site change a couple of weeks ago, I never would have seen this particular need coming. I envisioned a site falling out on a day trip with another family, or a failure during a night with grandparents while her dad and I were off doing something fun. But here we were, me looking like I'd been in a prize fight and in intense pain on the sofa, and my husband an hour's commute away at work.
It took only 2 more phoned in questions to accomplish the task (I don't have to prime again, right? Can I leave the old site in until I get home in case it's a gusher?). By lunch time she was in the 200's and by mid-afternoon, back under that 200 line.
As our little family reconvened around the dining room table that evening, and I sipped my pureed lentil soup through a straw, my husband decided the day needed a happy ending. It was the warmest evening yet, with the hope of spring in the air, so I was loaded in the car and we headed to our favorite ice cream stand. My daughter enjoyed her first italian ice of the season. My milkshake was the most calories I'd consumed in 36 hours. It was a well-deserved treat.
I'll confess. Sometimes I just go through the motions during an endocrinologist appointment. We have an awesome doctor at an excellent clinic. I care very much about keeping my daughter's diabetes 'under control' (or whatever other phrase you want to substitute because you too recognize the impossibility of that one). Yet sometimes I'm just not into it. Maybe I'm overwhelmed by too many concerns or questions. Maybe I feel like things are going fine and we don't need much help at the moment. Maybe the trip in, the parking and the check-in process have sapped my day's allotment of mental energy. Maybe there are other things going on in life which seem more important. Maybe it's just a bad day. It happens. I hope when I'm not feeling terribly focused, I can look back on our most recent appointment to see why I should try to dig a little deeper.
I didn't come into this particular appointment with a written list of questions and concerns. I wasn't geared up to address a series of specific problems. I knew a things were not going perfectly, so there would be some tweaks, but I wasn't feeling the intense need for help that I sometimes do. Yet as I focused on the blood sugar graphs before us, and on what the doctor had to say about them, I found myself fully engaged. And engaging him. So a conversation which could have glossed very simply over Sunday night's lows turned into a long and helpful conversation about the absorption rates of all kinds of different site locations and what the factors are. A suggestion to change the correction factor wasn't just jotted down, but led to some really interesting information about the general math behind correction factors. And on we went. By asking follow-up questions, I picked up several useful tidbits of information.
We also had conversations which included my daughter as an active participant. We addressed some things I already knew (pre-bolus breakfast at least 15 minutes ahead, for example). But what I realized as we talked was that my daughter hearing these things from the doctor was entirely different than hearing them from me. I can tell her to pre-bolus every day, but it's often as effective as telling her to pick up her room.
There are countless other reasons to use our endo time wisely. High co-pays, making the most of the time away from school and the rest of life an appointment requires, and taking advantage of the unique opportunity to receive high quality medical care are reasons which come to mind.
So even if just one of the above reasons is true for you, I'd encourage you to make the most of every endo appointment. You're bound to gain some nugget of information or support which will make it worth the effort.
I hear a lot about teenage boys. They're always hungry. You can't keep anything in the house. Buy out the snack aisle before you even consider inviting their friends over.
What nobody every clued me in to was that the same is apparently also true of teenage girls. Maybe it doesn't last as long, or maybe I'm encountering a particularly hungry bunch. But these kids are ravenous.
A bunch of friends came over on a recent half day. Each one had bought a sandwich or a bagel at one of a couple of eateries on the way home from school. They sat around our dining room table and ate them. Completely. It wasn't long ago that I'd have 6 girls here for lunch and there'd be half bagels, large portions of sandwiches or the bulk of the pizza I'd ordered leftover. On this day, there were napkins and crumbs.
Half an hour later my daughter emerged from the basement playroom (hang out room? rec room? what do we call it now?). "I'm bringing down the popcorn chips."
Within half an hour she returned with a bowl containing only a hint of popcorn dust and absconded with over a pound of grapes.
Pretzels were next, enough to fill a large sized salad bowl. Crumbs and salt covered the bottom half an hour later when it was returned for a refill, and again when it was cleaned up as the girls went home. Presumably they, like my kid, proceeded to eat full dinners and ask for dessert.
The whole experience felt like a cross between feeding cookie monster and a pack of wolves. Food disappeared instantaneously. Crumbs and dust were left in the wake.
The diabetes link in this post, you ask? It's a challenge to bolus for this kind of grazing. Up to a year or so ago, I just didn't allow it except at the occasional party. Snack time involved a bowl, careful counting or measuring cups, and a nice solid bolus. And on a regular basis, that is still the preferred procedure here.
Somehow, though, she managed to count and bolus enough of her snacks to end up with a very good blood sugar by the time her friends went home and she started asking what was for dinner.
I started with the good news: Monday's post about my daughter inserting her infusion set all by herself for the first time. It was a great moment. I wish we could have spent the weekend celebrating.
Sadly, there was bad news to balance the good: the absorption rate for this hard-won site varied from 'I don't think this site works at all' to 'OMG we might not have enough juice to make it through the night.'
Sunday was our first-ever three juice box night.
We experienced things over the life span of this leg site that we have never experienced in 12+ years of diabetes. We saw our first significant residual lows from exercise. We spent two nights trying to keep up with those lows. Alternately, we gave corrections for highs which would not budge without accompanying activity.
The site went in on Saturday morning. It followed a site which had certainly reached the end of its usefulness, so there was a residual high there, combined with a residual high from an evening at a friend's house dining on chicken fingers, munchkins and cookies. It was a lazy Saturday morning. Our intense desire for this site to be a success led us to chalk Saturday morning's highs up to that variety of factors and to leave the new site in despite some concerns about its effectiveness. Around 1, I walked her to a friend's house where I left her with a blood sugar hovering in the 250's. An hour of Just Dance on the Wii led to double down arrows on the Dexcom and some barely covered snacks. She was still low overnight (at least 8 hours post-exercise) and needed juice and some temp basals to keep her going.
We figured we'd overcorrected for the morning and mid-day highs and that it had simply all caught up with her.
But by mid-Sunday morning, she was high again. It was another sedentary morning, maybe that was the issue. We've been seeing a mid-morning creep up this week anyway, so maybe it was a pattern we needed to address? We remained reluctant to pull the site and dampen the excitement of having inserted it to begin with. After lunch, both frustrated with the high and happy to see the sun, we walked around the park: a little over a mile. By 3, she was headed straight down, but evened out around 80 through dinner time. She didn't really crash until after 10 at which point there was no turning it around. That night was our first ever 3 juice box night.
Monday was still streaky, but better, I imagine because of a more steady pattern of intermittent activity and rest. It still felt like all of our usual issues were magnified exponentially. The post-breakfast spike was higher and the post-gym slope was steeper.
I'm thinking that this leg site thing is not for my child, at least not on the weekends. In case of emergency, sure. If she's 30 miles away from me and her site rips out, and that's where she's most comfortable putting in a replacement? Fine. Otherwise, I might think twice. This weekend was a tough one.
Except for the part where she inserted a site all by herself, of course. Which is still amazing and still the most important part of the whole story.
*As always, but particularly since this is a very specific post, please don't take this as medical advice. In addition to the usual reasons for this caution, please note that due to the fallout from this debacle, I have not slept much and am running primarily on coffee, strong tea and dark chocolate. Leg sites might be just the thing for you. Another leg site might be just the thing for us. The only point I'll stand by is that affirming the bright side of having your kid insert her first infusion set should outweigh any complaining you do about the results.