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.

Family Vacation

The Emery family just returned from a fantastic vacation in the beautiful mountains of New Mexico.  Amelia's family has several cabins in Cloudcroft and we took a 1,350 mile round trip through the southeastern part of NM this week.  We left on Friday, July 6th, which also happened to be our 16th anniversary.  We drove to Carlsbad and made our way to Sitting Bull Falls in the  Lincoln National Forrest.

Then we made our way to the cabins in Cloudcroft, where we helped Nana and Papa clean them out and prepare them for our week's habitation.

 

We made our way out to White Sands National Monument, south of Alamogordo and played in the dunes for a while.  Ele was leaping joy!

 We took advantage of our proximity to several hiking trails, exploring our bit of the mountain with the California Cousins.  This trail was just around the corner in Cloudcroft and took us up to a scenic lookout where we saw the remains of the famous wooden "S Trestle".

 Back at the cabins, Papa put his engineering ingenuity toward repairing/rebuilding the deck on the front cabin.  Everyone pitched in and helped.  By the end of the week, it was 90% finished. :)

 We took a drive up the mountain to the Sunspot observatory.  It is a huge telescope devoted to measuring and observing cosmic events relating to our Sun.  It was way cool!

 On our way back down the mountain, we stopped at a scenic overlook and took in the beauty of the Tularosa Basin.  What a view!

 We enjoyed all sorts of rustic cooking and camping fare, but this treat was wonderful, if a bit sticky: S'mores!  Made with huge-mongous marshmallows.

 We actually got to take two trips out to White Sands, our second was after the California Cousins arrived.  On our second trip, in addition to playing in the dunes, sliding down and drawing in the sand, we also played with "light writing" with my camera.  Below, you can see a stormcloud I drew with a flashlight.

Nene and Nana put up a hummingbird feeder and we had quite a show with several of these marvelous birds fighting for dominance and feeding rights.

 On Thursday, Amelia and I decided to treat the kids and cousin Zach to a horseback trailride.  It was magnificent, fun, and helped us understand what 'saddle sore' means.  It was my first time to do any significant horseback riding and I loved it (maybe as much as Mary Hannah did!)

 We took a second nature hike out to Bridal Veil falls, but were unlucky because part of the trail was closed and we never actually got to see the purported 45 foot falls, although we enjoyed the hike.

 On the way home on Friday, we traveled north to the Three Rivers Petroglyph site and the kids tried to count the reported 21,000 individual glyphs.  I think they only got up to around 500, but it was a commendable effort.

 After that, we drove up to Carizozo and saw the Vally of Fire, where ancient lava vents spewed molten rock up into the basin and created a huge field of what is now cooled lava.  The lava is non-porous and helps sustain a variety of desert wildlife, but is hard on shoes and will shred your footwear if you try to walk on it for long.  Still, it was fun to visit.

 All in all, it was a fantastic vacation where we got to see fun things, have some great experiences and make memories with family.

But the wonderful people pictured above were not the only ones who came on our vacation.  We had an uninvited guest: Diabetes.  I know I have talked about living with Type 1 in our family before, but during our vacation, as much as we tried to just enjoy a normal time, we had to make accommodations for our implacable foe.  On Sunday, Ethan went low in the morning while we were at church in Cloudcroft.  Over the course of the day, he had to check his BG 20 times and was low 17 of them.  We were constantly trying to stuff sugars in him and it got so bad that we almost had to use his glucagon shot.  The nearest medical facility was down the mountain 16 miles away (the trip takes 30-40 minutes because of the steep grade to get down the mountain).  We had to call the emergency pager system from our Pediatric Endocrinology team at OU children's medical center.  They were a big help and at about 4 am on Monday morning, we finally were able to rest and get back to 'normal'.  I remember when we were packing for our trip, a friend who was visiting commented to Amelia when she was packing the first couple bags about getting everything packed up.  Amelia told her that the first few bags were just the medical supplies we have to take.  With two Type 1 Diabetics, we had to have supplies for the entire week, as well as backups for everything.  Extra insulin pods for their pumps, extra Novalog, extra Lantus, extra syringes, extra juice boxes, extra sugar treats, extra alcohol wipes, extra test strips, extra ketone sticks... extra everything.  Enough for two kids for one week.  We don't get a break, even on vacation.  Most of the week, the kids' BG were okay, but everything we did required extra vigilance on our part... hiking?  Check BG before we leave, restock juice and skittles in case we have a low due to more exertion.  White sands?  Great fun, but we have to interrupt every so often and check to make sure we're in range.  I don't know whether it was the extra exertion or the altitude or what factors contributed, but it seemed that the kids were either too high or going low whenever we checked them.  I'm not complaining so much as explaining.  As you can see from the pictures above, we don't let it stop us, but it sure does slow us down.  Cousin Zach was sleeping in our cabin, but on Sunday night, when Ethan was fighting his lows and feeling pretty emotional (due to his BG and the situation), Zach got so freaked out at the scene, he ended up sleeping in another cabin because it scared him to see his cousin Ethan screaming and crying about hating diabetes and not wanting to have to get a shot of glucagon or have to do injections because we took his pump off him while he was going low, to try and bring his BG back up.  I can't help thinking that if we had our D.A.D already, it would have tipped us off to the lows and helped us combat them before they got critical and sent us on a roller-coaster ride of BGs that lasted almost 20 hours.  We continue to hope and pray for a cure so that maybe someday, our family vacation will not include that dastardly diabetes.

-jeff

Guy's Weekend August 2007

Well, I've not posted in a few weeks, so here is an update on some stuff I've been doing:

I'm officially trying to start up a side-business. Please take a minute to go by the webpage and offer critiques or praise or think about hiring me to take some photos of you, your family, business, home or event.

Emery's Memories - Fine Photography
Emery's Memories - Gallery of pictures

So, that has been occupying some of my time. Of course family and job stuff is consuming most of my time, especially as I wrap up my summer and get ready to head back to Grad School at the end of the month.

One of the ways that I've found to enjoy my remaining days of summer is by getting together with some of my friends to have a weekend away. Here is a slideshow linked from my Picasa album with some pictures of this past weekend. Click the picture in the slideshow to view the album and leave comments on the pictures, or comment below.




Anyhow, hopefully I'll be able to post again soon, but I appreciate any feedback or constructive criticism you can give concerning the look and feel of the Emery's Memories site. Thanks.

-jeff