Vacationing with Diabetes

Having just returned from vacation, I would normally be sharing the highlights of the trip.  But I'll save that for other social media.  Here on the blog, I want to discuss the experience of taking Diabetes along with us on vacation.

You see, Diabetes doesn't just visit us occasionally, he barged into our lives 10 years ago and will not go away.  Our vacation prep started by trying to pack and tie up loose ends, but also included shelling out big bucks to make sure we had supplies to manage the kids' diabetes while on the road: extra insulin pods, extra insulin, syringes, test strips, glucagon shots, ketone strips, juice boxes and skittles and PB crackers for lows... 

Once all that was taken care of, we loaded up and started on our trip.  On the second day of the trip, we hit our first bump in the road: apparently, of all the extra insulin pods (Omnipods, the brand of pump we use), we apparently had over half of them from a bad lot which kept failing.  We usually change pods every three days.  Planning on being gone 9 days, that means, at minimum we needed 3 pods per kid, or 6 pods.  We packed 15.  By day two, we had already run through four pods because they kept failing, requiring us to discard the malfunctioning pods and apply new ones.

Traveling means long stretches of inactivity while riding in the car, coupled with boredom and a lack of healthy snack foods means we typically have higher BGs when on the road.  That is not usually a big deal, as we compensate for it with insulin intake and extra BG checks.  However, on this trip, we were fighting blood glucose lows instead of highs.  We went through lots of juice boxes and snacks and had to be extra vigilant for the first leg of our trip.

Sherly watches over the kids as they explore the Grand Canyon

After our first long day of travel, we spent day two at the Grand Canyon.  It was breathtaking.  It was amazing.  It was a place where memories were made.  Of course, diabetes wanted to make some memories, too.  After being cooped up in the car, the previous day, diabetes came with us as we hiked along the South Rim.  I wish we could have just enjoyed the view, but we had to stop every couple of hours and make sure the kids' BG were in range.  All in all, it wasn't such a bad BG day though.

Day three at the Hoover Dam was a blast, but keeping up with supplies and keeping the kids' kits stocked was a challenge, because we were burning through juice boxes.  Turns out, while Amelia, MH and I were touring the visitor's center, we got a call from our traveling companions that Ethan had left his glucometer in the car, which was parked in the parking structure.  Not an insurmountable challenge, but it highlights one of our challenges.  If he had left his wallet or his camera, we would have said something like, "Oh, well.  You need to learn to keep up with your things, mister."  But we cannot NOT go get his glucometer/controller for his pump.  I want to point out that 90% of the time, both kids are very responsible with keeping up with their kits, but those 10% when they forget, it is almost always inconvenient.

We drove from Hoover Dam to Las Vegas to have dinner on the strip and got to see some amazing things, like the fountain in front of the Bellagio and costumed vendors hawking photo opportunities for "tips" (I'm sorry, but the standard tip is $5, sir...)  On our hike up and down the Strip, MH had a low and we discovered that neither of them had restocked their kits with extra juice or crackers, but we managed (this will be a theme for the rest of the trip).

The next morning, we got up and made ready to travel to the end of route 66: The Santa Monica pier!  But before we left, we needed to change MH's pod and... you guessed it...old pod off and two pod failures from the bad lot means three more pods unusable.  We are now three days in and we've gone through half our pods.  The rest of the drive to the coast was scenic as outside we saw the environment change from desert to mountain to coastal plains.  We spent the rest of the day playing in the Pacific and on the pier.  It was fantastic. 

One of the side effects of traveling, we discovered, was the stress it adds to an already stressed out Diabetic Alert Dog.  Aside from having her routine interrupted and rollercoaster BGs with the kids, she didn't eat very well and developed an upset stomach.  Sherly started exhibiting signs of distress and we ended up having to take her to the vet the morning we were supposed to head to Disneyland.  We ended up letting her stay at the vet the first day, but it put us a couple of hours late.  Then, after only one ride, we stopped to check BG and Ethan's pod failed.  And then the spare he brought with him failed.  And MH didn't restock her kit from the day before so we had ZERO pods and ZERO extra supplies.  So, Ethan and I left the park and went back to the house where we were staying to gear up and restock.  That put us back to Disneyland at about 2pm, having only experienced the parking facility and Cars Land (in California Adventures).  The rest of the day went by without a significant incident until, at the end of the day, when we were watching the Wonderful World of Color, Ethan started crying.  I asked him if everything was okay and he made some nonsense reply and I immediately sat him down to check his BG: he was low.  Luckily, we had supplies, so we quickly recovered and enjoyed the rest of the show.  

I won't bore you with the minute by minute details of how diabetes follows us around and makes us jump through hoops, but the following pictures are typical of every couple of hours (or sooner), we would have to stop what we were doing and make sure that the kids weren't about to get sick from high BG or pass out from low BG. 

     

After all the pod failures, we panicked a little and had the Endocrinology team at OU call in some Lantus and backup supplies to a Wal-Green's in Anaheim.  We figured that at the rate we were going through pods and supplies, we had better have backup in case we ran out and had to revert to using Lantus and Novalog injections.  Unfortunately, with it being the beginning of the year and our deductible not met yet, that set us back another $1,000.  OUCH!

I guess the only other big event that happened was our 2nd day at Disney, we had extra supplies in Amelia's backpack and had even had Ethan repack his kit so we could use the backpack for extra supplies.  At one point, Amelia and the girls all went for a special lunch with the Princesses and I was with Ethan and his best friend, Jonah Mace, and their family.  Ethan said he felt low and checked his BG and he was 53.  I told him to go ahead and drink a juice and we would get some lunch.  At that point, we had this exchange:
Me: Okay, get a juice and some crackers in you, brother.
Ethan: Um, dad, you told me to clean out my backpack so mom could use it for supplies.
Me: Yes.
Ethan: So I did, but all of my supplies were in the backpack that mom has.
Me: You didn't restock the kit you have with you?
Ethan: No, I just have my glucometer...
Me: *sigh*

We powerwalked through the crowds, trying to get to a place to buy him a juice and some carbs.  Everywhere I looked, there were long lines for the food vendors (it was lunchtime, remember) and I was worried that he was dropping and would pass out.  Luckily, I was able to get into a store and buy a pretzel and some Apple juice (and two juice boxes for spares) and bring up his BG pretty fast.  I couldn't help thinking that if circumstances were just a little different, I might have had to call emergency services.

MH had one instance where she felt so shaky that she sat down in a store at Disney to check her BG and one of the staff told her she couldn't sit in the middle of the aisle.  MH was so low it was all she could do to scoot over to one side and continue to treat herself with fast sugars, but it upset her.  Amelia spoke to the supervisor and educated them about how to approach someone who was in the midst of checking BG.  She said, "The supervisor had a reasonable expectation that people should not just sit in the middle of the aisle, but when someone obviously has medical equipment out and is checking their blood sugar, a more appropriate response is to ask if she is okay, not to chastise her for sitting down.  I pointed out that it would have been worse if she had passed out while standing up and hit her head on one of the kiosks and bled all over their floor.  The supervisor got my point and apologized."


The return trip home was fine, with no diabetes issues.  But to recap: our vacation was fantastic, but the diabetes part was a drag.  Rollercoaster BG due to diet and exercise changes on the trip, pump failures and supply costs, vet expenses for our poor stressed puppy and trying to manage responsibilities with the kids restocking their kits...

I walk a line of being thankful that our diabetes is manageable (usually) and being resentful of having to manage it at great expense of our time, energy, health and finances.

Diabetes, I hope you enjoyed your time on our vacation.  I wish we could take a vacation from you.

When even "normal" gets overwhelmed...

I had a really great day today. Really great. A good day with the family. We attended worship services at the Abilene Mission church, which was a interesting experience for us. Afterwards, we fellowshipped with two great families all afternoon. Great worship, good food, friendship, swimming and even a nap. Not bad for a Sunday!

So why did I get overwhelmed this evening? Because sometimes it all just catches up with you. Let's rewind....
On Friday, we had our quarterly A1C checkup at OU Children's Hosptial. This checkup allows us to get a glimpse of how Mary Hannah's and Ethan's bodies are handling their blood sugars, and consequentially, allows us to know if we need to make adjustments in our Diabetes Management strategy. In general, we feel like we have a handle on how our family copes with this chronic illness that has afflicted my older two children. When people ask us how we deal with Type 1 Diabetes, my response is usually that it has become our 'normal'. Yes, it was traumatic when we got the diagnosis for Ethan. Yes, it was a kick in the pants when we got Mary Hannah's diagnosis. Yes, if I stop and think about it, we are affected everyday in a million small ways by how Diabetes gets to dictate how we go about living our 'normal' everyday lives. But the truth is that most of the time, we don't stop and think about it, we just do it. I asked Amelia recently what she told people when they asked her about our coping strategy. She said something like, "I tell them that we just do it. People usually are pretty sympathetic and say stuff like, 'I don't know how you do it...' and I always just think, 'The options are: you do it, or :your child dies, so you just do it."

Well, I don't know what combination of factors fed into how I was handling things tonight, but I got a little overwhelmed this evening. After a great time today, we got home and I started making some dinner for Ethan and Eleanor (Mary Hannah was spending the night with a friend). Ethan's blood glucose has been high most of the day, and so I opted for a meal with few carbohydrates. See, this is one of the things that I usually don't think about. As a family, we can't just decide what we want to eat based on what we're hungry for, or what we have on hand to cook. We always, always, have to be aware of how what we eat will affect blood sugars. Because Ethan had been running with high BG all day, it indicated to me that for some reason, he was not getting the insulin he needed to process the sugar in his blood. It could have been an occlusion in his pump. It could be that he is getting sick and despite having insulin to cover his BG, his liver could be dumping extra sugar into his blood to help his immune system. It could be that Ethan was sneaking food and not telling us (doubtful). It could be a ton of different things. Anyhow, I figured that a low carb meal would be best, so we had what we call 'homemade lunchables'. Basically: lunch meat (effectively zero carbs), cheese (again, very low carbs), crackers (just a few carbs each), sugar free pudding (just a few carbs) and flavored water drinks (zero carbs). I told Ethan to go ahead and check his BG again before dinner. Turns out, he left his insulin kit at our friend's house. Now, in our case, leaving the insulin kit isn't a big deal if we are at home. We have extra syringes, extra insulin, extra glucometers, extra everything here at the house. But in principle, we're trying to help Ethan grow in his responsibility for managing his diabetes on his own. Part of that is remembering to take his kit with him wherever he goes. I gave him the ol' pep talk about being responsible and we sat down to eat.

After dinner, it was time to change Ethan's pump site. For clarification, Ethan has an Omnipod insulin pump. It is a nifty little pump that has all of the component parts contained in a 'pod' that is about the size of a small pager. We fill the 'pod' with insulin and affix it to the site and a spring loaded needle inserts a short 1/4" plastic cannula into the subcutaneous fat tissue and the pump begins delivering insulin to the body. The pump's computer is programmed with all the information about Ethan's insulin needs and does for him what your pancreas and endocrine system do for your body. Back to the story... there are basically only a few sites on the body with enough body fat to serve as sites for the pump: the abdomen, thighs, upper arms and buttocks. Over time, if the same site is used over and over, it builds up a resistance to the insulin absorption and becomes less effective. Thus, it is considered to be 'best practice' to rotate the sites you use. The site is usually changed every three days or so, so if you use all the available sites, each site will only have to bear the burden for three days every couple of weeks. On a little boy who is experiencing growth spurts and losing his baby fat, this process can be challenging. Ethan does not like to use his legs, as he says it is uncomfortable for sitting and when he is lying down. However, after our visit to the Endocrinologist, we were reminded of the necessity of rotating sites. So, I told Ethan that we needed to use his legs, too. He whined and fussed at me because he really didn't want to place the pump on his legs. Incidentally, MH doesn't like to use her abdomen and prefers her legs and arms. Ethan continued fussing at me. I reasoned with him:
Me: Hey buddy, look at your fingers. (he holds up his fingers) How many do you have?
Ethan: Twenty.
Me: Count again, just fingers.
Ethan: Oh, ten.
Me: How many have callouses because of how often you have to prick them to check your sugars?
Ethan: (counting his callouses) Four.
Me: Okay, so those fingers are getting worn out, right? It makes it harder to check your sugar when you overuse those fingers. The same thing happens to your pump sites. We really need to be using your legs, too, buddy.
Ethan: But I don't like it with my 'pod' on my legs!
Me: I know, brother. But, listen, I can't take the Diabetes away from you. All I can do is help you do the best job taking care of it, and I'm telling you that even if you don't like it, this is the best thing to do.
Ethan: (crying now) I hate it. Why did God even have to invent... (he catches himself here...) Why does God allow Diabetes to happen?
Me: ...
Ethan: I hate it. It... (looks at me right in the eyes) it SUCKS!
Me: Yes. Yes it does. But until someone figures out a cure, we just have to do the best we can, alright?

We go on to get the 'pod' affixed to his thigh and the spring loaded needle inserts the cannula with a *pop* and Ethan just explodes with crying and fussing. I know that it hurts to some extent, but we've been doing this for a while now and I know that his crying is out of proportion with the actual pain and has more to do with the mileage he's getting in attention from Daddy, but I'm feeling pretty sympathetic to him right now and so I just let him fuss. I drew him into an embrace and just let him cry. After a few minutes, I sent him back to his room to get ready for bed and promised to come read a story in a few minutes. Ethan left the room and it was as if his emotionality had been transferred to me. All the unfairness of Diabetes, all the sh.. stuff we have to deal with on a day in-day out basis, all of the expense, all of the vigilance, all of the equipment, all of the .... you get the idea... The frustration of having to hold my son and not have an answer for him about why *he* has to suffer from this condition, it all just hit me and I cried. Not for long, and not very loudly, but I cried. Amelia had been watching me and asked if I was okay. I told her that I know we usually just consider all this to be our 'normal', but that the experience of having to reason with my son, to just accept the suck-iness of this disease... it is an experience that I shouldn't have to have. I don't cry about it often, but tonight it just really got to me.

So, Amelia held me for a few minutes while I cried and then I sucked up my fussiness and read my babies a nighttime story and tucked them in to bed. I told them that I love them and that God loves them and that everything is okay. Then I went back into the living room and Amelia and I sat, reading books in companionable silence till the phone rang. It was from Mary Hannah's friend's mom letting us know that MH didn't have extra insulin so that she could change her 'pod'.
Amelia: Do you want me to go?
Me: *sigh* Nah, I'll do it.
Amelia: (lightheartedly) Well, I managed to pack extra test strips for her glucometer and an extra 'pod' for her because I knew she'd need to change sites tonight... I just forgot the insulin.
Me: (kissing Amelia) 'sokay, baby. This is our life. Be back in a bit. You want anything while I'm out?
Amelia: I don't *need* anything, but if you manage to bring home a sweet tea, I wouldn't mind.
Me: Back in a bit...

And I'm back to 'normal'


*I am not looking for sympathy here. My purpose in blogging about this is to heighten awareness about the social/emotional toll of chronic illness. For people who don't deal with it, I hope it will raise your awareness about some of the challenges that families face on an emotional level. For people who read this and identify with the emotions and struggle, I hope that this narrative will reassure you that your feelings are normal and acceptable. Often, caregivers get stuck feeling like they can't express their feelings because they'll be seen as whine-y, or misunderstood, or pitied, etc. I appreciate what you are going through and I hope that you have a way to cope with and find strength in doing what you do best: caring for and loving your families despite the way that the illness tries to tear down and control your daily life. May God richly bless you. - jeff