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.

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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 Throwback Thursday: What Brings Me Down

Today’s Prompt: Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

I asked V what brings her down about living with diabetes. Without skipping a beat she said “Low blood sugar brings me down.” She’s a wiseass. Wonder who she takes after?
I asked her to give it some more thought. “Think about it. What gives you the sads?” After mulling it over, she said “When I can’t eat when my BG is high. My life revolves around food, so it gives me the sads.” And then she happily scampered away.

Perhaps it’s no use asking a 12-year-old what brings her down about living with diabetes when it’s the last thing on her mind. And to her credit often she does this whole T1D thing way better than us, adults. She’ll wonder from time to time how much easier life would be without diabetes. She’ll get annoyed and frustrated about having to deal with the hassle of it. A bad high will add a generous portion of extra upset and anger when she is already upset and angry. A bad low will make her feel really lousy. Sometimes there will be a painful pod or Dexcom change. But she keeps moving along and happily living her life. How I hope that it stays this way.

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I hope she keeps this joy forever and ever

As to what brings me down? I don’t go there too often. I stay away from “what ifs”, take things in stride, and laugh at diabetes whenever I have a chance. When I do go there, it’s not so much down as worried. Worried about bad lows and future complications. Worried about V giving up on her diabetes care as she navigates adolescence. Worried about V being able to maintain good health insurance and access to healthcare when she becomes an adult. Worried about her quality of life with diabetes.

It’s not so much down as defeated. Defeated when we do everything right and still don’t get desired results. Defeated when we can’t put a dent into our credit card debt because medical expenses are relentless. Defeated when that stubborn high BG won’t come down no matter how aggressively we treat it. Defeated when we work so hard to tighten control but the A1C won’t move anywhere but up.

It’s not so much down as angry. Angry every time I hear about a cure in mice. Angry about so much ignorance and misinformation about diabetes. Angry about diabetes and diabetics being the butt of everyone’s jokes. Angry about judgment and hate.

It’s not so much down as exhausted. Exhausted after being up at night because of V’s highs or lows. Exhausted from fighting with insurance. Exhausted from having to shlep to so many doctor’s appointments. Exhausted from having to think about diabetes 24/7.

While V is young, I carry these emotions for her. It is my job as a parent to lessen her burden and I do it gladly. But I can’t do it forever. It is her diabetes and eventually, sooner rather than later, all these burdens that come with it will become hers. It is the one thing that really brings me down. 

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My really pathetic attempt at whipped cream art, created on one of V’s diaversaries. The message spells “T1D Sucks”. Because it does.

 

Quiet before the sail

We leave on our big vacation in one week. First we fly across the country to spend a couple of days with family, then we board the cruise ship. This will be our second cruise with T1D. We know the drill. And yet I’m starting to lose my shit a little bit as we are preparing ALL the things.

V had her regular Endo appointment last month where we discussed cruise BG management strategies. Endo made suggestions re: some dosage adjustments. But her main recommendation for V was to remain active. Last cruise was 5 days long and she spent the majority of it running high. She felt it and it was not pleasant. We could let it go for 5 days, but this upcoming cruise is 9 days. Running high for 9 days straight is not going to work. We’ve been talking about being more reasonable with food, being even more aggressive with insulin, and about the added importance of moving around. We’ll have to take walks around the ship. There are other fun active things to do onboard and there are more choices than on our last cruise. And we’ll get off the ship a few times to go to beaches and snorkel. This time it has to be different.

Then there is so much stuff to pack. So.much.stuff. I generally love trip planning but packing all the  medical crap is the bane of my existence. We will be in the middle of nowhere for 9 days and I feel like there is no room for error. I’m making a list and checking it twice. The Insulet rep gave us a loaner PDM (pump’s remote) to take with us as a back up in case V’s fails. How many pods to bring? I’m thinking at least 10. No, I’ll feel more comfortable with 14. Two or three vials of insulin for the pump plus a vial of back-up long-acting insulin. Syringes, strips, meters… Do we have any unexpired ketone strips? Must check. Glucagon! How many? I’m thinking at least two? Because you never know and I do not want to take any chances. AAA batteries. Dexcom sensors and charger. Wipes galore. And so much more. I’m half-panicking that we will forget something important or not bring enough of it. Yes there is an infirmary on the ship. No I don’t want to rely on it for anything because I have no idea if they have anything we need. WHAT IF WE FORGET SOMETHING IMPORTANT?!?!?

OK, breathe. Breathe. We got this. Need to bring some snacks for air travel and shore excursions. Also need to pack gels and glucose tabs. At least there will be easy 24 hr access to food/juice. And there are plenty of gluten-free eats on the ship.

Trip insurance was purchased long ago. In fact, it was purchased within two weeks of booking the cruise so that we could get a waiver for pre-existing conditions. With three out of four in the family living with chronic health conditions, there is no way in hell we are going on a trip without trip insurance. Have to remember to print out insurance paperwork. Should probably print out a travel letter from Endo? Though we’ve never needed it before so maybe not…

And then there are other meds and equipment including a nebulizer (because F U asthma and you never know…) Have a duffle bag that will be dedicated to medical supplies. Bought more luggage tags. Need to put tags on V’s diabetes backpack and the duffle bag and clearly label them as medical supplies. Need to make sure all devices are properly labeled.

So.much.stuff.

We got this. I am going to overpack like we are going away for a month but I will leave knowing that we have everything V needs to have a fun and safe vacation. Soon we will be back on the high seas having a time of our lives. All this prep is worth it.

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A Letter of Hope

I am going to kick off November – Diabetes Awareness Month – with a letter of hope. It’s a brilliant idea of Maureen at Mumoftype1 to include these letters in hospital care packages for families of newly diagnosed T1 kids.

Dear family of a newly diagnosed child:

It’s undoubtedly a really hard time for you now. Your world has been turned upside down. You may be feeling scared, overwhelmed, sad, frustrated. You are probably bombarded with so much information and wondering how on earth you’ll be able to remember half of it, let alone be able to do all the things you need to do to take care of your child.

I remember this time so well. Like many other families, diabetes was the last thing on our mind and, in fact, we had no idea what Type 1 Diabetes was. I remember how, in the first days after diagnosis, I was wishing that we could fast-forward a year, to a point where we would not feel so overwhelmed, where we knew what we were doing and at peace with our new normal.

Now that we are more that three years in, I am going to tell you this: it will get better. I promise. It is a steep learning curve but before you know it, you will learn and do so much. You will become the boss of diabetes!

As much as you  can, embrace the hand you’ve been dealt. Dive in and learn. Ask questions, do your research. Learn together with your child. The more you understand about diabetes and its management, the more empowered and confident you will feel, and it will trickle down to your T1 child and the rest of the family. By now I feel like I’ve earned my honorary endocrinology degree and our daughter earned a title of a true diabadass. We have both skills and confidence to handle any situation diabetes can throw at us and it gives us a peace of mind and a feeling of pride and accomplishment.

Diabetes does not stop our daughter from doing what she loves. Be it sports, or playdates, or camps, or sleepovers, or traveling – she continues to do it all. You will learn how to make necessary adjustments, get the right kind of support and ask for appropriate accommodations. The question is not whether your child can do something with diabetes, but how it can be done. If there is one thing that I want to convey in this letter, is that you will learn how to work diabetes management around your life, not the other way around. It’s not always simple and there will be many hurdles to overcome, but I encourage you to start thinking about this right away. We don’t have a choice about having diabetes in our children’s lives, but we have a choice of how to deal with it and how to make the best of it. 

So, welcome to this crappy elite club. Did I mention that this club is full of amazing people? Please reach out to other T1 families in your community and online. Your local JDRF chapter is a good place to start. Our fellow d-peeps are an incredible source of support, encouragement, and wisdom. Our daughter also benefits immensely from having other T1 friends in her life.

Hang in there. Trust yourself and trust your child. T1 kids and families are strong and resilient. You got this. And all of us here got your back. You may not know us but we are in your corner. You are not alone!

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Sound of silence

V asked to take a little break from Dexcom. Just for a day or two, she said, and then we’d put it back on. It’s been two weeks and counting. Sometimes you don’t realize how much something affects you until it’s no longer there. This break is helping me realize that I have a major case of alarm fatigue.

These two weeks have been so much quieter. No more daily high and low alerts. No more waking up in the middle of the night to false alarms. No more buzzing and beeping in the middle of various activities. Mind you, there are plenty of other beeps that keep our senses stimulated. The “Beep Beeeeep, Beep Beeeeep” of the pod, one hour after we change it or a few hours before it expires.  Or the “Click Click Click Click Click STAB!” sound of cannula insertion. Or the “SCREEEEEEEAAAAAAACHHHHHHHHHH” song of its people the pod sang to us when it failed this morning. But those are far less frequent noises compared to the daily onslaught of Dexcom alarms.

There have been times here and there I really missed our “Deckie.” V was not feeling well for a couple of days last week and I wished I had the data to better fine-tune her basal rates.  There were a couple of nights we had to get up in the middle of the night and test, instead of being able to glance at V’s BG on our phones. There were several times it would have been so much more convenient to dose by Dexcom instead of having to test. And there were a couple of times I would have treated high BG a lot more aggressively had I had Dexcom trend data to inform me of how BG was responding.

Despite mentioning here and there that she wanted to put Dexcom back on, V does not seem eager about it, and we are not pushing. Truth is, we are enjoying the sound of silence. In the meantime, we are finding value in going back to basics, staying in tune with V’s body, letting go of micromanaging BG, and using our spidey-sense to make dosing decisions. Tonight V woke up, got out of bed and came downstairs to tell me she felt really low. Indeed, she was 44. Perhaps we would have caught it much earlier with Dexcom, but we caught it anyway, treated, and back to sleep she went. A few days ago, she was 56 after intense swim practice. It would have been so much easier if we could see her BG trend on Dexcom. But V asked me if she could wait it out a little and not treat because she felt OK and because her BG often tends to shoot up after practice. I agreed. Sure enough, 15 minutes later she was 65, and settled on a solid number in lower 100’s within an hour.

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No Dexom? No problem. She scores 100 anyway!

This break won’t last forever. V’s middle school sleepover is approaching in a few weeks and at that time wearing Dexcom will not be negotiable. We will take it one day at a time.  And maybe there is room for a compromise? We could turn off all alerts altogether and use Dexcom solely for trend data. Or we could change low alert from 75 to 55, and high alert from 225 to 350, in order to not miss more serious lows or highs. Or perhaps my alarm fatigue will be diminished so much that I will be ready to go back to our old settings and put up with the alerts in exchange for easier and more precise BG management.

This time will come soon enough. Today, I am letting go.