Sleepover: Behind The Scenes in 20 Screenshots

Sleepovers are the bane of my existence. It’s hard enough to manage T1D when V is sleeping a few feet away in her room. When she is elsewhere, we become the 24-hour on-call support and security center. Some nights are completely uneventful. Other nights we barely sleep. This is another invisible aspect of diabetes management, which most people are hardly aware of. I’m about to give you a little glimpse of what it takes to manage misbehaving BG when V is sleeping away from home.

V spent last night at her friend’s house. Before she got there, the daytime BG was fairly good. Trouble started brewing around dinner time.

So everything got back on track. Or so we thought, because at 9:52 PM…

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IOB = Insulin On Board, or amount of active insulin in her body.

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It pains me that I have to tell her to set the alarm to wake up in the middle of a night on a sleepover! What other kid has to do it? But it’s her life.
So at this point we have a plan and I am trying to get some sleep. When I open my eyes an hour later and check Dexcom, I do not like what I see, so I text V again:

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IMG_E5952.jpgI’m fighting to stay awake while doing complicated diabetes math. We need to override the pump and give more insulin because she is so high. But I don’t want to send her plummeting to a low either, especially because she is not at home!

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All that careful math, and still… She went from 400 to 225 with two arrows down in 45 minutes. And now she has a lot of active insulin in her body. Time for opposite action!

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So now it is about 1 AM. I have been sleeping poorly in 45 min increments, waking up to glance at Dexcom and make sure V is OK. I’m hoping that finally we can get things stabilized. I get to close my eyes for a couple of hrs. Then I wake up to Dexcom high alarm at 3:38 AM.

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Clearly something is not working with the pump. Absorption issue? Bubbles in the cannula? Who knows? It’s not completely useless, it’s obviously delivering some insulin, or else V’s BG would keep climbing even higher and higher. What we do know is that an injection of insulin can do wonders to bring BG into a better range. What we also do know, from the prior few hours, is that the same amount of insulin administered by the pump has been fairly useless. Understandably, V is not at all thrilled about my preferred course of action.

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V – if you are reading this, please realize that when this happens at home, I get up and give you a shot. And then I also change your pod. Usually you sleep through most of it. It sucks but it needs to be done.

I do not hesitate to put on my mean Mom hat. Also, by now we’ve been texting for nearly half an hour, it’s almost 4 fucking AM, and I have neither patience nor energy.

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I know V is really tired, mad at me, and in extra bad mood because her BG is so high. But for the record, what I really want to do is to launch into a tirade of how dare she does not appreciate how much I do for her. In all caps. But I know better because really, it is so, so hard on her. She may not believe me but I get it. So I suck it up and let her vent, try to keep my cool, and make sure everything is taken care of.

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At this point we both crash. When I wake up in the morning and check Dexcom, she’s OK. Not great, but somewhere around 200. Good enough.

By the way, the other bane of my existence is cropping and editing 20 screenshots. But if it helps you understand what we sometimes have to go through, it’s all worth it.

#makediabetesvisible 

 

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Awareness, More Awareness…

Oh hi there! Come here often? I was totally shocked when I realized my last post was at the end of August. Has it really been that long? I guess I put a few things here and there on my FB page, but haven’t blogged in a while. November is Diabetes Awareness Month and in past years I’ve been blogging up a storm. This November I’ve stayed pretty quiet. I don’t have time or energy to post every day (or every month – HA!). I was not going to post anything today either but blogging material landed on my lap.

V’s diabeetus may have been feeling neglected, because just as World Diabetes Day got started on November 14th, diabeetus decided that we needed more awareness of it. To that end, Dexcom low alarm went off. And boom – one minute we are sleeping peacefully  and completely unaware, the other minute we are totally aware!

What a better way to mark Wold Diabetes Day than to battle lows in the middle of the night. (That was sarcasm.) Why was V’s BG so low? Diabeetus, that’s why.  According to all rules and logic it should not have happened. She went to bed at a solid 80 with no active insulin in her body and trend arrow holding nice and steady. She has walking pneumonia, which technically could have/should have raised her BG overnight, not lowered it. And in the past few days she’d been steadily going up overnight, even if she started with a good number before bed. We have not made any recent changes to her pump settings. We have not administered any insulin at bedtime. And yet, we had to pump her with four glucose tabs and suspend insulin delivery for an hour, and it took us about 3 hours to stabilize her BG and get it into a safe range.

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Over the course of 3 hrs alarms kept blaring. We kept getting up. V kept waking up. We poked her fingers multiple times. We could have given her more sugar right away but we did not want to over-treat and end up with an epic high, so we kept monitoring and doing it one step at a time. It was stressful and exhausting. Welcome to another night in our humble T1D adobe.

So why am I writing about this now, you may ask? Because I want to bring to light something that we don’t often talk about. What happened last night is great example of “shit happens, T1D edition.” People with diabetes have to face a lot of judgment. One reason for it is an assumption others often make that the person is doing something wrong: they are not eating well; not exercising enough or exercising too much; they are not following their doctor’s orders; they are not taking the correct amount of insulin. That surely there is a way to get BG under better control, to prevent most highs and lows, but the person is not making enough effort.*

Sure, there is always room for improvement and better glucose control. But what I want you to understand, really want you to understand, is that there are times when T1D makes absolutely no sense, follows no rules, and is completely unpredictable. Like last night, when it decided to act like a jerk, just because.

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The one thing I really want you to take away from this post on World Diabetes Day is that diabetes management has so many moving and unpredictable parts. Please don’t assume, never ever assume, that the person with diabetes or their caregiver are doing something wrong or not doing enough. And be prepared that if you ask me “why”, the only answer you may get is “diabeetus, that’s why.” Usually delivered with a shrug.

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*Disclaimer: People with Type 2 diabetes have it one hundred times worse when it comes to these types of judgments and assumptions. Sadly, sometimes it’s my fellow T1 peeps and parents who, in their defensive reactions of “I/my child did nothing to get T1D!”, throw fellow T2 brothers and sisters under the judgment bus. But that’s something to address in a separate post.

 

Good to go

In the past, new situations would require a more detailed explanation of T1D. My daughter has type 1 diabetes. “Here is what you should be aware of; here is what to do if she is high or low; here are the supplies; here is how to use glucagon; here is what she may need help with.”

Now that V is fully capable of handling all aspects of her diabetes care, things are different. One week before babysitting camp, I tried emailing who I thought was the right contact  to give them a heads up about V. I never got a reply and things got too busy for me to follow up. So on the day of drop off, I introduced myself to camp counselor and said this: “Just so you are aware, V has type 1 diabetes. She has all of the supplies with her and she knows what to do, she is completely independent in her care. She has her phone on her, she needs to keep it to call us if she has any questions or needs help. Please feel free to call us if you have any questions or concerns. Otherwise, she’s good to go.” The counselor asked if V had snacks for low blood sugar and I assured her that she had plenty. And that was that.

Today was back to school day. I prepared V’s supplies for health office. I like to take a minimalist approach, pack only the necessities, and refill as needed. As she is flying mostly solo, she only visits the health office if she’s unwell or runs out of supplies unexpectedly, and she always carries a glucagon and glucose tabs in her backpack.

Back up supplies, snacks and fast acting sugars will do. All fits in a relatively small box. Not pictured are a vial of back up insulin, string cheese and a couple of back up frozen gluten free meals, that go straight from our fridge/freezer to the one in health office. No letter, no flow charts, no detailed explanations.

When we arrived to school, we learned that there was a new nurse. I found her by the front gate, introduced myself and asked her where to drop off supplies. “I am V’s mom. She has type one diabetes and celiac. She’s completely independent in her care.” The nurse asked me if V was “the one with the pump” and told me she’s heard great things about her. And that a wonderful health tech who was there last year is going be there every day except Monday. Alright, this makes for a good start! I told her I’ll have V drop by and introduce herself at some point.

And that was that.

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Off to 7th and 4th grades they go. One is fake smiling. The other one is completely honest about his lack of enthusiasm. 

P.S. After V reads this post, I’m sure she can comment on how annoyed she was with the school not informing the new math teacher about her T1D, and her having to spend 10-15 minutes explaining it to her. She can also tell you how stupid diabeetus completely refused to cooperate and she fought highs all day long for no good reason. And we can also talk about our ongoing struggle of getting V to wake up to CGM alarms in the middle of the night, as it makes sleepovers more challenging.

But aside from that, she knows what to do. She’s good to go.

Milestones

***Two months. It’s been two months since my last post. I’ve been meaning to write about this or about that, but ultimately life got in the way. I think it’s my longest break between posts. I don’t know how to feel about it. I miss more regular blogging but it’s still not happening for whatever reason.

***Braces, round two. No one is excited about it. Between restrictions that come with braces (no hard or chewy foods, among other things) and restrictions that come with Celiac, V gets, well, more food restrictions. And pain and suffering. Because braces are painful and annoying. Yay…Nope.

Enjoying final corn on the cob before braces.

***1:5. This is V’s shiny new daytime insulin to carb ratio. To translate from diabetes to real world, this means that for every 5 g. of carbs V needs to give 1 unit of insulin. It is a LOT of insulin. It used to be around 1:15 back in the day. This means a few things. One, she is receiving much higher insulin dosages with a much smaller margin for error. If we overestimate the carbs, she is at a much higher risk of a bad low. If we underestimate, her BG can shoot through the roof. Both happened. We are learning to adapt and deal with it. Secondly, we are going through insulin like water. At V’s next Endo appointment will need to address changing the Rx to increase the amount because running out of insulin is about the worst nightmare anyone with diabetes can experience. Thirdly, the pods are only lasting about two days. They can last up to three, if they don’t fall off or run out of insulin. A pod can hold a maximum of 200 units. She usually burns through about that much in a couple of days now. Again, to put it in perspective, in the beginning we used to fill it up with about 75-80 units and it would last three days with some insulin to spare. Fourth, this means that unless the food is truly carb-free, such as meats and cheese, she needs to cover it with insulin. There is no more such thing is a little bite of this or a little bite of that. There is no more not needing to bolus for low carb foods that are 5 g. of carbs or less. Got carbs? Better break out some insulin.

Why so much insulin now? In one word, puberty. Raging hormones, growth, changes. And it may get worse before gets better. And speaking of worse…

***Highest A1C since diagnosis. It is what it is. And it is not really all that bad of a number. Still, it’s higher than desired. Why? In one word, puberty. We increase insulin dosages, things stabilize for a few days, and then V starts going up again. Up up up she goes and we can’t seem to catch up. But then she’ll have random days of lows, lows, lows. It’s hard to find patterns. Sometimes there are no patterns. So, FU puberty.

***Babysitter, officially. She’s 12. She got her CPR/First Aid Certification. She attended babysitting camp. I helped her draft her very first real resume. She has been helping out with neighbors’ kids for quite a while, and now she is ready for bigger parent helper/babysitting jobs.

 

Lesson learned

As we drove into a small town for V’s travel swim meet, we passed a hospital with the ER. I took a note of it. I don’t know what non-T1D parents notice when they come somewhere new. Architecture? Restaurants? Me, I want to know where the hospital is. Because while we never needed it before, you never know…

This was going to be a fun weekend, V’s first travel swim meet. It was in a small town in a middle of nowhere, about two-hour drive from home. We decided to make it a girls’ trip, just V and I, and V was excited to spend time with her teammates.

As I packed all the diacrap for the trip, I followed the usual formula of packing extras to be prepared for pods to fail, Dexcom sensors to get ripped off, insulin to be accidentally left in the sun to go bad, and all other imaginable and unimaginable catastrophes that could wreak havoc with diabetes management. But as I picked up a bottle of Zofran, I set it down. Nah. We’ll only be a couple of hours away. What are the chances we will need it?

The first day of the meet went well. In the afternoon, we retreated to our hotel room to rest. Then we headed out to meet the rest of the team for dinner in a nearby restaurant. There were not many restaurant options. I fretted about being able to get something gluten-free for V, called the restaurant, confirmed that our choices were slim. V was uncharacteristically indifferent about it. “I’m not really that hungry.” She was perfectly happy to have a soda and then we’d get her something else from a supermarket next door. As we sat down and started to look at the menu, V said that her stomach was hurting a little and she did not want to drink even soda. Then she got up and disappeared for a few minutes. When she came back she motioned to me to come outside to talk and informed me that her stomach was hurting, so she went to the bathroom and threw up. But now she was feeling better, so she’ll just take it easy.

Well, crap. I started wondering if she possibly got “glutened” during the meet. I should not have allowed her to have those nachos. Yes, I checked the ingredients and it seemed OK, but I really should not have. But it’s strange that she’d react to strongly to gluten, she does not normally feel anything. Still, I shrugged it off. V went back to her table with other kids, I ordered my meal and started eating. I noticed that V made another trip to the bathroom. And another one. And one more. And one more still. She was trying to hang in there but clearly she was not feeling well. I ate my food without much chewing or tasting  so we could leave quickly. I was still clinging to hope that something V ate, combined with the heat and physical exertion, did not agree with her, and that it would pass if she could get some rest. Soon enough I was forced to face the fact: this was not accidental glutening. It was not even food poisoning. V was experiencing the worst GI virus she’s ever had in her life.

Once in the comfort of our hotel room, she began vomiting violently and frequently, multiple times per hour. Her stomach was already empty from the five rounds of vomiting in the restaurant. I begged her to drink some water but she’d have the hardest time with it. This was typical for a GI virus – she’s never able to keep anything down. Her other trademark symptom is crashing BG. Hence we always keep Zofran because it does a great job of taking the edge off of nausea and vomiting so that V can at least hydrate and get some sugar in to stabilize BG. Except that magic pill bottle was sitting on the dresser in her room, two hours away. Well, fuck. I ran out to the store next door to try to find something to decrease nausea. Came back with a bottle of Pepto Bismol. Forced one dose into V with a predictable result: it came out in a spectacular projectile vomit a few minutes later.

For the moment BG was staying stable, so I reached for the ketone meter. V is not prone to developing high ketones. Except when she has a GI virus. Then her ketones can rise rather rapidly and we always monitor it very closely. Whenever V has a GI virus, it is always a wait and see if we need to head to the ER because the danger of DKA is very real. I put the test strip in the meter and…nothing. The meter battery was dead. OMFG. We had not used it in months and I did not bother to test it before we left. Now we have crossed into a much scarier territory. If I cannot monitor ketones, it’s a lot harder to tell if it’s safe to continue managing symptoms on our own or if/when we should head to the ER.

I don’t panic easily but I started to feel really worried. I asked for any tips on my local T1D families Facebook group and someone suggested if I could find a meter battery somewhere. I went to the front desk and asked if by any chance they had the battery we needed. They did not, but they told me I could buy it in a dollar store a mile or two down the road. And it was still open! I decided that leaving V alone with a puke bucket for 15-20 minutes was a risk worth taking and rushed there as quickly as I could. Once I had a functioning ketone meter, I could breathe a little and go back to “wait and see”.

Indeed, ketones started to creep up. Miraculously, BG was holding stable. And then V started to feel thirsty – another completely unexpected turn of events. Normally, under similar circumstances she does not want to touch any liquid with a ten foot pole. Initially I was really excited and encouraged her to drink. Insulin and liquids are the winning combination to avoid DKA and safely ride out the GI nastiness. But she was drinking voraciously and promptly vomiting everything up. I started restricting her water intake. She was begging me for more. I was begging her to take small sips so that at least some of the water would stay in and get absorbed. She tried to sneak into the bathroom to drink out of a faucet because she was so thirsty. I lost my shit and yelled at her because I was trying to keep her from going to the hospital!

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6 water bottles downed in that many hours

In between V’s projectile vomiting, I would replace the trash can liner and throw the one full of liquid in the big trash can outside. I would wash my hands compulsively. I went back to the supermarket next door to buy more water. Then I would Google things. I Googled directions to the ER. I double checked that they treated pediatric patients. I Googled how quickly the body starts to absorb water after drinking. (FYI, a bit of it becomes absorbed as quickly as in 5 minutes, but full absorption takes a lot longer.) I Googled signs and symptoms of dehydration. And I repeatedly kicked myself for not bringing Zofran with us. It’s only a quick little trip a couple of hours away, I said. What could possibly go wrong, I said. There will be no need for it, I said. And even if V got sick, we can always come home if we need to, I said.

Of course V was in no shape to embark on a two-hour drive home. We decided to try to ride out the night, as long as ketones and BG were cooperating. Ketones went up a little more but seemed under control. BG stayed on a higher side, so I administered insulin with abandon. V got a reprieve from vomiting for about four hours and we both were able to sleep a little. I was hoping that when she’d wake up she would feel better. Wrong. She eagerly continued to drink water and vomit it back up.

I talked to my husband and he headed out our way to bring us Zofran. It just so happened that he was taking our son to a BMX race in a nearby town, so he left earlier to come to us first. In the meantime, I decided to page Endocrinologist on call and consult. She confirmed that we were doing everything right, and together we came up with the plan. If Zofran worked to eliminate vomiting and reduce nausea, we could try to drive back home. Otherwise, we’d need to go to the hospital first and get V re-hydrated and stabilized before we could hit the road. Our drive back involved a long stretch of going through the desert with no facilities whatsoever. No stores, no bathrooms, no medical facilities of any kind. If V was not stable enough, driving back would be a really dangerous thing to do. I went to the hotel’s front desk, explained our situation, and received permission to take an extra hour to check out.

My husband arrived to the hotel at about 11 AM with Zofran. Let me tell you, this pill is fucking magic. With a single dose and within 15 minutes, the vomiting stopped. Completely and totally stopped. V was still feeling crappy but she was no longer puking. We waited an hour. No vomiting. Shortly after 12 Noon we got into the car and started our escape. We drove past the ER again. Another half hour later we went through another town with a hospital, so before we hit the freeway and the empty desert I asked V one more time if she felt well enough to continue. She assured me she did not feel like throwing up. I took a big breath and hit the accelerator. We arrived home two hours later without incident and V slept through almost the entire drive. We kept up with Zofran for another day or two. It took V a few days to fully recover, but there was not another single vomiting episode.

I don’t know how about you, but I learn best when I fall flat on my face and it really hurts. Then it is prudent to memorialize the lesson and the pain because I will NEVER EVER LEAVE ON ANY TRIP WITHOUT ZOFRAN AGAIN. Never. Fucking. Ever. We got so lucky that somehow V’s BG stayed stable and din’t crash, so we did not need to get extra sugars into her, which would have been impossible if she could not keep anything down. We got so lucky that I was able to resurrect the ketone meter and monitor ketones, and that they did not spike too much. We got so lucky that my husband was able to come to our rescue. We narrowly avoided the ER visit, with all the lovely invasive interventions that would have followed, in an unfamiliar town, with doctors having no access to V’s medical history, and with possibly questionable knowledge and experience with T1D.

Lesson learned.

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Recovering at home with best helpers ever

 

Most-wanted gadget

V’s annual Celiac blood panel was done recently, and results are not great. Four years after diagnosis and her antibodies are still positive. Worse yet, the numbers crept up a little from last year. Last year things were heading in the right direction and her doctor was hopeful that with this blood work result everything would be in the negative. Not the case.

I’m really frustrated. What are we doing wrong? Obviously somewhere, somehow, V gets exposed to gluten. But where? Is there cross-contamination at home? We are not 100% gluten-free. We keep regular bread and bagels, cereal, some pre-packaged snacks, and that’s about it. All meals we make are gluten-free. We are extremely careful about cross-contamination. We have a dedicated toaster oven and a cutting board. But perhaps it’s not enough and we need to go completely gluten-free at home?

Or is the problem with restaurants where we eat? Once again, we found a few that we consider safe. However, because V does not typically have any reaction to gluten that she can feel or we can see, we have no way of telling if what she is eating is actually safe.

Or perhaps the issue was during the cruise, where getting a safe gluten-free meal proved to be rather a frustrating challenge? Since we did the blood work shortly after we returned, it may be reflective of possible cross-contamination there?

How I would love to know for sure. And guess what? There is actually a gadget out there that could help us. Nima Sensor will analyze a food sample and tell you if it contains any gluten. If we bite the bullet and go 100% gluten-free at home, we can test food at restaurants and maybe finally track down the source of cross-contamination.

There is one little glitch. The price of Nima Sensor is a cool $275. And that’s just for a starter kit. Since each food sample requires a new capsule, those will run you more. The website recommends a subscription of 12 capsules per month at a cool price of $60 per month. If we don’t do subscription, we have to pony up $72 for 12 capsules. Those capsules will go quickly if we want to test V’s meals when we dine out, even though we don’t normally eat out more than once a week.

So here I am, staring at this cool gadget, really wanting it. But it is simply too expensive.

What do we do? I have no idea. If you are reading this post and you have Celiac, I’d love for you to weigh in. I’m also curious if it’s a reasonable expectation for tests to be negative. It is really possible? Would you eat a product that, according to the label, was made on equipment shared with wheat, or is that a no-no? What about a product that is made in a facility that also processes wheat? It is unreasonable for us to think that we can live a normal life where we don’t wrap V in a bubble, allow her to eat at places other than home, and don’t have to be on edge about everything she puts in her mouth?

We are going back to the GI doctor later in the summer to discuss all this. Perhaps we can squeeze in another round of blood work just to rule out vacation cross-contamination. Aside from that, I’m at a loss.

As safe as it gets: samples that we got at the Gluten-Free Expo

 

Diabetes Blog Week Friday: More Than Diabetes

Today’s prompt is:
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  

I love this topic! Screw diabetes. Instead, let’s talk about unrelated fun stuff and post gratuitous photos. Without further ado, here are some random facts about me and my T1d and gluten-free crew.

I’m a runner. I’m a very slow runner but I don’t care. I started running in 2009 and to my own amazement it became my hobby and my passion. I don’t know how I used to cope with life before I started running. So far I’ve completed 4 full marathons and 13 half marathons. I have no idea what my next race will be or when, but I’m sure it will happen sooner than later.

 

I love the ocean. I love being near, around, or in the ocean. I does not get old. When I was growing up, it was my dream to live by the ocean and now I’m living my dream. It’s also one of the reasons I love cruising. My favorite thing to do is sit on the balcony as we are sailing on the open ocean. It’s the best thing ever.

 

These two faces! We have the best doggies ever and we love them fiercely.

 

I love Start Trek TNG. Yes, Trekkie all the way. Shockingly, I don’t care about or watched Star Wars. I am probably the only person on Earth, I know. Don’t hate me, OK?

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Love this quote!

 

Last but not least, I’ll leave you with our recent family picture. Taken on a cruise, of course 🙂

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This concludes 2017 Diabetes Blog Week. I have lots of catching up to do and can’t wait to read more posts over the weekend.