The time we took a break from Dexcom and almost didn’t miss it.

Once upon a time, another Dexcom sensor died a very honorable death, after working dutifully for over two weeks.

“Do you want to replace it right away or take a break?”

“I want to take a break!”

I don’t blame her. It must be annoying at best to always have bionic devices attached to your skin. Devices that itch, poke, click, beep, vibrate, wail, scream, get caught on things and draw curious and puzzled looks from strangers When things are relatively stable we go along and let V go without Dexcom for a couple of days. We’ve been enjoying a period of relative stability, so what the heck, let’s do it with one less device.

At first the silence is a little unsettling. Why is it so quiet? Is it out of range? Did the sensor die? (Oh yeah, it did, and we took it off. DUH.) The lack of data is also unsettling. What are the in-between numbers? Is she going up or down? Do we need to be checking more often? What do we do at night – do we get up to check or let it be if everything is OK at bedtime? (We settle on the latter.)

About a day or two into it we settle down. The absence of alarms is lovely. I don’t bring the phone to my nightstand at night because I have nothing to monitor. We relax a bit and go more by feel. We are asking more often “Are you feeling alright? Are you feeling low?” but we are not acting hyper vigilant. Things continue to remain relatively stable. V has her highs and lows but there is nothing out of ordinary.

A few days later V has a pretty bad low during swim practice. By bad I mean 39. She feels absolutely nothing, but we check her at least every 30 minutes and catch it during that routine check. She is feeling OK and after treating the low she is able to get back in the water 15 min. later. That night she asks to put Dexcom back. “It would come really handy in the pool!” “No it won’t” I remind her. It does not work when submerged in the water, and even if it did she would be out of range most of the time. I find myself almost talking her out of putting the sensor back because I am now realizing that I’ve thoroughly enjoyed a break from all the alarms and constant data mining. I pull back. It’s her decision. She forgets about Dexcom and we continue with the reprieve.

Few more days pass uneventfully and without a dire need to have Dexcom re-attached. But that time comes sooner that later. V needs to do fasting labs and we need to closely monitor her numbers. She is also about to go for a sleepover to her grandparents. Putting Dexcom on becomes non-negotiable. Immediately we are thankful to have it back because it helps us to keep V’s numbers stable before her labs and we get the labs done on the first try. (As a sidebar, what a pain it is to do fasting labs for a diabetic child. We have to figure out how to keep her closer to 200 overnight and the morning of so that she does not crash. If we have to treat we cannot do the labs.)

Having access to the data again and being able to act more proactively vs. reactively is a welcome change. We did miss it after all. But we almost didn’t.

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Dead to us: school cafeteria

V used to love school cafeteria. We would let her go once a week and it was a special treat. The food is not terrible but nothing particularly great, so we would pack lunches almost every day. Diagnosis of diabetes did not bring much change, as detailed nutrition facts were available and V could give herself insulin to cover lunch. Then came Celiac. We studied the menu closely. Surely, there had to be a day where they served something she could eat. Well…

W is for wheat. And it is in every single meal served except for milk and fruits/veggies.

W is for wheat. And it is in every single meal served except for milk and fruits/veggies.

I emailed the district  food service department and they said that they were happy to make accommodations for us. Yay, right? Not so fast. V was given the choices of: 1) chicken drumstick in a corn tortilla or 2) turkey in a corn tortilla or 3) sunflower butter in a… you guessed it… corn tortilla. Between yuck, yuck, and yuck V chose the first yuck. It was OK in the beginning and filled V’s cafeteria fix but it got old quickly. As the school year end is approaching (we are on a year-round schedule and don’t get out until mid-July), V started to express how much she was disliking the food. She started to ask us to not send her to the cafeteria and make lunches for her. Problem is, we picked to send her (and her brother) to the cafeteria on Wednesday because Tuesday is our BMX night, we get home late, and we have no energy to make lunches. Cafeteria used to solve that problem: we did not have to worry about packing lunches and kids could get their treat. But for how long would V have to tolerate her chicken drumstick with tortilla, week after week? Feeling increasingly bad for her, we needed to think outside of the box. Thanks to diabetes, V has access to the microwave in the nurse’s office, so we thought that perhaps bringing a frozen meal would be an easy and more appealing alternative. I went exploring frozen options at different stores and found quite a bit.

Stocking up on some of our gluten-free favorites at Target.

In addition to these entrees, I also found a few varieties of frozen GF burritos, and all these frozen foods had reasonable carb counts too. Granted, the price of V’s Wednesday lunch would go up from $2 at the cafeteria to $4-5 (because GF foods must be made with unicorn ingredients, judging by the price), but whatever. We want to V to be happy, we want to ease our burden, so naturally the solution came down to paying through our nose to provide an acceptable option. So yesterday I sat down and composed this email:

Hi ________,   Effective this week V will no longer be eating at the cafeteria on Wednesdays. I appreciate your help in making accommodations for her gluten-free diet. I did want to relay, however, that her experience was very disappointing. She used to love getting food at the cafeteria, it was a special treat for her. By now she is sick of eating her unappetizing chicken drumstick and tortilla, week after week. Our family is fortunate in that we have resources to send V with a fresh home-made lunch every day. I cannot imagine how difficult it would be for a child with Celiac without same resources who has to rely on cafeteria food every day. I really hope that more appetizing gluten-free options will become available soon. I am aware of many other school districts in the nation that are able to provide fresh (or at least less processed) food options for school lunches, which then translated to easier and better gluten-free options and other dietary accommodations.
 
In the meantime, who in the district would be the best person to communicate our disappointment with the lack of reasonable gluten-free options on lunch menu? I’d be particularly interested in speaking with person(s) in charge of creating the menu.
 
I would also like to revisit menu options before start of next school year to see if better choices become available.
This morning I got a response:
Good Morning Polina, Thank you for letting me know that V will no longer be eating with us. I am sorry to hear that you have been unhappy with the options provided this past year. Special diet meal plans can be particularly challenging in a district as large as ours when you consider the number of students that must be accommodated and the variation in allergies/conditions we are accommodating. Finding products that meet the majority of the student’s needs, fit within our budget, and meet the federal meal pattern requirements is no small task. That being said we are always looking to improve our services and I would be happy to pass along your comments to the other members of our team that participate in menu planning. Please feel free to reach out in the fall and we can discuss options for next school year.

What is that I hear? Blah blah blah, we are sorry, blah blah blah we can’t do anything, blah blah blah it’s too hard, blah blah blah. Blah. Good bye cafeteria. And good riddance.

We went on a little vacation…

…and nothing bad happened!

OK, so maybe going away for 2 days does not even count for regular people. But for us, T1D and gluten-free people, going away for two days takes as much preparation as going away for two weeks. Besides, we were going up to the mountains, where they most likely do not have a 24-hr pharmacy and we can’t easily get our hands on any needed supplies. You never know what could happen, T1D has a sick sense of humor and you have to be prepared for everything to go wrong at the most inopportune time. And since I still have a little bit of residual trauma from not packing properly, I wanted to be extra careful.

I packed diabetes stuff first. I made my list, I checked it twice, I packed the box, I checked it, I had hubby check it, to make sure we did not forget anything important. So here you go: extra insulin, extra strips, syringes for just in case, extra pods, extra Dexcom sensor, a small food scale and amazing collapsible measuring cups (I love those things so, so much!), tape, extra wipes, extra fast-acting sugars, and Zofran in case a stomach flu or food poisoning strikes. I’m tired from just writing all this out.

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Pack ALL the supplies!

After diabetes is taken care of, comes the Celiac part. We always have to bring some food with us. Will we be able to find gluten-free groceries? Most likely yes, but we need to bring with us at least some basic necessities. I packed cereal, bread and GF granola bars. Then I got on Find Me Gluten Free website, researched restaurants in the area, and then called them when we were on our way to confirm that they indeed served gluten-free options.

To be honest with you, I hate going through all this prep. Packing sucks as is, but this takes it to the next level of suckage. It’s not hard but it is tedious, time-consuming, and rather exhausting. Spontaneity is a little scary when going on a trip. We have to have supplies. We can’t just stop at any restaurant to eat. So we learn to always be prepared and then we can be spontaneous within the confines or our limitations.

And that is exactly what happened once we hit the road. We had plenty of snacks if anyone got hungry. We picked out a few possible restaurants we could eat at but decided last minute where and when to dine out. We could comfortably say yes to all activities knowing that we had everything we needed. Sure,V had some highs and lows, but nothing was out of ordinary. There were no pod failures. Dexcom kept working despite pushing 2 weeks. All devices remained stuck to skin, thanks to extra tape we brought. All lows were easily treated with fast acting sugars we brought with us. And so we went hiking and exploring, dined out, made food at the condo, swam in the pool, chilled out, spent time with friends, took naps, and enjoyed a change of pace and scenery. And it was wonderful!

Enjoying gluten-free crepes

Enjoying gluten-free crepes

Hiking

Hiking

Diabetes Blog Week Bonus Entry: Bring on The Crazy

I did not need to use the wildcard for diabetes blog week but it’s too good to pass up:

Diabetes can sure bring some crazy moments.  So tell us your Top 3 craziest D related stories!  If you can’t think of three, don’t worry.  We’re just as happy with one or two . . . .   

Crazy? I got crazy. This is a story of something that happened about a year ago and I briefly shared it on our Facebook page then, but I think it’s good enough that it deserves its proper blog post.

I am jarred awake in the middle of the night by the loud sound of Dexcom high alarm. It takes me a few seconds to orient to where I am and what is happening. I open my eyes and process for a minute. We are at home, I am in my bed. Everything is dark, quiet and peaceful, except for that high alarm that went off a couple of minutes ago. Did it actually happen? Was I perhaps dreaming? I mull it over some more, the prospect of getting out of bed and going to V’s room to check on her highly uninviting. I am warm and cozy in my bed and I’d really like to get back to sleep. But I cannot ignore the alarm. I heard it loud and clear. It punctured my dreams in a way that was not even remotely related to what I was dreaming about. It had to have been real.

Resigned to disturbing my sleep completely, I stumble out of bed. As I am heading out the door my husband stirs. “I checked her about 20 minutes ago, she was 200 and I bolused her” he says and rolls over to go back to sleep. My heart starts skipping a beat. The high alarm is set to go off at 300. If she were 200 just a short time ago, received a bolus, and climbed to over 300, it surely means pump failure. This is serious. This is something that I need to check RIGHT AWAY. I speed down the hallway, imagining what a pain it would be to have to change her pod now and get her stabilized. And I would have to get V up to pee on a stick to check for ketones. Seriously, who needs this at 2 AM?! Stupid, stupid diabetes!

I stumble into V’s room and fumble with the light switch. I grab Dexcom and look at the graph. 189. I shake my head and look again. 189. I look at the PDM and confirm that indeed my husband bolused V a little while ago and she was around 200 at that time. I do not understand. I heard Dexcom alarm, but it could not have alarmed if BG were under 300. Was I mistaken about the settings? Perhaps it’s set to alarm at 200 or 180? I take a good look again but sure enough the high alarm is still set for 300. This can only mean one thing: in the middle of the night, apropos of nothing, I dreamt the sound of Dexom high alarm. It was clear, it was convincing, and it actually woke me up. Except it never happened.

I shuffle back to he bedroom, felling relieved that there is no crisis to deal with, annoyed that now my sleep is shot, and highly amused about the whole thing.

And that is the story of how I reached the advanced level of D-parent crazy.

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