Diabetes Camp - The Dropoff

The time has come.  She's been waiting all year for this.  Back in January I asked Kortnie if she would like to go to Diabetes Camp this Summer.  She would turn 8, 4 days before camp and 8 is the age you can start going.  She thought about it for a week or so and asked me a few questions and then she told me that YES, she'd LOVE to be able to go.  Around March is when Registration opened up for Camp AZDA.  The Camp would run a whole week, June 9 - June 16 and would be located around 3.5 hours from home near the town of Prescott, Arizona.  I started the registration process, dang there were a ton of questions, but they were all good questions and totally relevant to what goes into taking care of a Type 1 Diabetic kid, I paid the $50 registration fee.  She was accepted to camp, received $85 worth of financial aid and we rounded up the other $615 needed to send her to camp.  Her Grandparents (my parents) and Great-Grandparents (Brian's Grandparents) paid for her camp fees.  Her Grandma (Brian's mom) bought her a few things that she needed to pack for a birthday present.  We spent a week before camp packing and discussing.  I was nervous. She was nervous, but more excited than nervous.  The camp booklet said that she didn't need to bring any diabetes supplies, no insulin, no test strips, no meter, no poker, no low snacks, no syringes, no alcohol wipes, no ketone strips, the camp would provide everything.  I had a hard time not packing those things for her.  I was worried about her not having access to her meter at all times.  I understand that they probably didn't want kids to be burdened with carrying those things around and not have to worry about them losing their meters or getting them mixed up with other kids. Still, she and I both had a hard time not packing at least her meter and strips and a glucose tabs.  The camp did ask that she bring pump supplies, just in case they didn't have enough to accommodate everyone.  I felt better that I got to pack at least some of those.  :)  A week or so before camp she began emailing with 2 girls who we knew would also be first timers and in the same cabin as her at Camp AZDA.  That helped ease her mind and increase her excitement.

My husband took Saturday off so he could go with  me to drop her off at camp.  I realized that he was nervous too.  Somehow that made me feel better.  Since Kork's diagnosis we have not been able to go away overnight together.  It's been a hard 2 1/2 years, it took us a long time to even leave her with a babysitter so we could go on a date.   We figured that while she was gone away to Diabetes Camp we'd send the other 2 kids to his mom's and we'd go on a little trip ourselves.  We planned to drop Kork off Saturday afternoon and then continue on to Laughlin, we'd stay until Monday and then come back home so he could go to work.    I took the 2 kids to Grandma's on Friday night, came home, got a good night's sleep and we were on the road by about 8:30 Saturday morning.  The closer we got to Prescott the more freaked out I got.  Kortnie was bouncing around the backseat talking non-stop.  I could tell she was nervous and excited too.  Her blood sugars usually run high when she's like that.  We started the day off with a 200, I gave her a breakfast bolus and upped her basal rates by 20%.  Around 11am she was 115, a great number.  At 12:30pm when we stopped for lunch  (we were about an hour from camp drop off) she was back up to 257.  We had Subway, gave her a huge bolus and upped her basal rates 50% for one hour.  I was starting to tear up at this point.  After lunch we found camp, got her signed in, filled out papers and someone took us to her cabin.  Her cabin was smallish, you go in and turn right into her room-Aztec (turn left into another room Hualapai), 4 sets of bunk beds with name tags on each one.  She found her bed, a top bunk!  She found the beds of the 2 girls she'd been emailing with.  Also each girl was assigned a shelf unit to unpack their clothes onto.  There were 2 other beds, one for the counselor and one for the "med staff" that stay with each of them. Also a shower room.  In the "middle" common area were 2 sinks and 2 toilet rooms.  It was comforting to see ketosticks on the sink and sharps containers on the shelves :)  It was a big stuffy and hot in the cabin.  I hope they open windows while there, I'm sure they will.   After we saw the cabin we were going to go to the Arts and Crafts cabin to spruce up her name tag, but we were told that the bus from Phoenix was arriving and it had her roommates and counselor on it.  So someone whisked her away to go meet the bus.  Brian and I stood back and watched.  It's a big to do to welcome a bus full of campers.  I could see how happy Kortnie was, she found Sugar and A.K.. right away!  The group of campers was taken back to their cabin, Brian and I followed behind and that's when I really started losing it! 

I snapped this picture of them walking into the cabin, Kortnie is looking at me, Sugar has the green backpack and A.K. has a pink backpack and is walking up the steps.  I wanted to get more pictures, but they were oblivious to me, they were excited to be at camp and making new friends and they were hanging on every word that their counselor was saying.  I didn't want to impose on their fun. Kortnie took a disposable camera with her, I hope she gets a lot of great photos.  After I took this picture, the girls disappeared inside.  I wept, and Brian held me.  I wasn't ready to leave, but I knew we needed to. I went inside and listened to the girls chatter for a few minutes.  Kortnie was oblivious to me standing there.  I said "Kork!" She turned and looked "We're going now."  she said "Okay!"  I said, "well, aren't you gonna come say goodbye to us?"  She came out and gave me and Brian a hug.  The rest of the girls came out, they were going to go pick out boots for when they rode horses the next day.  Brian and I followed behind, when they stopped at the boot tent, we kept walking.  We got to the car and I said to Brian, "let me go back and tell those counselor girls about her high BG and check her BG again really quick" he said okay and he'd get the AC going in the car.  I went back, told the girls she'd had a big bolus and upped basal at lunch and to watch for a low later, they said okay they'd keep an eye on her and told Kortnie to let them know anytime she wanted to check her BG.  I said to her "why don't you check it now before I leave?"  She said to me, "no, I'm good"  they counselors told her to go ahead and check and make mom feel better, Kortnie said she felt fine.  I said Okay, the counselors said she'd be okay.  I told them I was a "crazy worried mom" they said all the mom's are and that it's okay.  I left again.  Got in the car, cried some more and we took off down the road.  Stopped for gas and Brian remembered that Kortnie had a wad of money in her pocket.  You aren't supposed to take money and valuables to camp.  He said we should go back and get it from her.  (hee hee now he's wanting to go back) I said, no we'll call, so we called and had someone go get the money from her and hold it until I pick her up. 

I posted on Facebook the picture I took and how I'd just dropped her off and how freaked out I was, I got lots of supportive comments.  But I tell ya, my stomach hurt, I had a headache and it took about an hour for me to stop crying.  I fell asleep for a little bit.  Brian and I got to Laughlin, got checked in and started to relax.  We called our other 2 kids at Grandma's, we slept in the next morning we ate breakfast, we strolled the riverwalk, we laughed and reconnected, we tried not to talk or think about the kids.  That evening we called the kids again and went to dinner.  At dinner Brian said to me that he wished we could call Kortnie too.  I was glad he said it, because I was thinking about it too.  I was glad to see he was missing them as much as me.  I was glad to see he was as nervous about letting somebody else take care of Kortnie as much as me.  It was one thing to drop Stasia and Graham off with Brian's mom, but a whole other ballgame to drop Kortnie off at camp with strangers, especially when so much goes into her daily care.  We knew that the camp would take care of her, we knew she'd be surrounded by other kids and adults with Type 1 Diabetes as well as medical staff and the people with out T1D would certainly be knowledgeable.  We knew she'd be okay and have fun, but that didn't doesn't make it any easier. 

On our way to camp this was one of our conversations:
Kortnie: "I don't think you've ever left me for a week"
Me:  "I have never left you for a week."
Kortnie: "Oh"
Me:  "Actually I have never even left Stasia and Graham this long, they are gonna be at Grandma's 3 nights, I've only ever left you guys one or two nights and that was before you had diabetes"  "I'm gonna miss you guys, all of you"
Kortnie:  "I'm gonna miss you guys too, but I think I will have fun"
Me:  "yep, you'll have fun"
Kortnie:  "If I like camp, can I go again next year"
Me:  "Yes"  I was really thinking, "oh brother, I'm a mess now, let's not start talking about next year already!"

Anyways, we dropped her off, she was brave, she was ready to go.  I cried, but I got myself under control.  I had a fun time with my husband, it was just what we needed.  I slept till 9am the first day and 9:20am the second day.  I didn't have to get up and check blood sugars in the middle of the night.  It was kinda of nice.  When we left Monday afternoon to go home, it was weird knowing that we were only going to pick up 2 of our kids, not 3.  Kortnie's little brother (almost 5) has asked for her 3 times since we picked him up.  I miss her like crazy, it's weird to have 2 kids and not 3 at home.  I am counting down the days until Saturday when I go get her.  I'll cry then too.  For now, I'll just be wondering what her BG is and wondering what she's doing and waiting for a letter in the mail.  I didn't get one today, sure hope I do tomorrow, and if I don't get one tomorrow, I hope someone else does and they call me and tell me.  She took envelopes addressed to us, Grandma Linda, Grandma and Grandpa Hess, and Great-Grandma and Bompa.

CareGiver

In the March issue of Woman's Day Magazine there is a section about Caregiver's. It's aimed at the generation of (mostly) Women who are taking care of an older family member. I read through it because, I figure that someday I'll be in this spot. Although the articles are talking about caring for an older adult I saw a lot of similarities to what I do now as a Caregiver/Pancreas for Kortnie.

Yes, she's my kid not an older adult, yes when I choose to be a mom I knew I'd be a "caregiver" to my kids, yes, I care for my other 2 kids too, but when I signed up to be a mommy, I DID NOT sign up to be a Pancreas too, I love all my kids and would do anything for any of them, it's not my fault or Kortnie's fault that her stinkin' pancreas doesn't work, it's just the hand we were delt. Being a wife and mother is hard enough on a good day, but when you add in a kid with a Chronic Illness and you have to literally be thinking about EVERYTHING SHE EATS OR DOES OR WILL BE DOING all the time just to keep her alive, that's a whole new ballgame. Mothering and Caregiving for this kid is taken to a whole new level!

The article that really stood out to me is "Stop Caregiver Burnout" on page 115
Here is a quote from the beginning of the article:
"You know the saying 'If the plane is losing oxygen, put on your own msk firs, then your child's.' If you're caring for a loved one, this applies to you, too. But with over half of caregivers reporting that they're eating poorly and not excercising and three quarters not going to their doctors regularly, it seems that most of them have abandoned their own oxygen masks. And understandably so: Though taking care of a loved one can certainly be fulfilling, there's no denying that it's emotionally taxing."
The article has these 3 main topics:
1 You Resent the Responsibility- It's inevitable that you'll feel frustrated-even angry-about how much of your life you're giving up and how hard the task is Yes! Sometimes this is me
2 You're Grappling with your own Mortality- Taking care of someone who's sick inevitably brings up questions like "Will someone take care of me someday" I wasn't thinking this, but now I am, but really I think this part of the article applies more towards the woman in her 50's and 60's who's taking care of an older adult
3 You Feel GUILTY- As a caregiver, you're making so many important, life changing decisions that it's all too easy to second-guess yourself. Are we teaching her the right way to take care of herself? Did we choose the right pump, doctor, insulin? Are we letting her make enough choices for herself? Will she be able to do this on her own someday, what if I'm not here to take care of her? Does she have independance? Am I forcing her to use a pump or CGM?

Anyways, this article hit home for me. Mostly I struggle with topics 1 and 3. Kortnie was diagnosed in November of 2009, I had only been back to work after having my son for a little over a year. I enjoyed going to work and talking with adults, I was working on losing baby weight, I was plugging along just fine and trying to make myself feel good about me. Then BAM! Diabetes hit like a freight train. I ended up quitting my job, I eventually gained back all the weight I'd lost and then some, everything I did was centered around Diabetes, learning all I could about it, figuring out the best ways to take care of Kortnie, learning how to do shots, choosing pumps, advocating, fundraising, a little whining too. So much, so much, everything was about Diabetes, I lost myself in my grief, I'm pretty sure I neglected my other kids, my husband, myself and maybe even Kortnie a little-not her D-but her Korkyness.

I'm happy to say that somewhere along the way I realized what was going on, I began to resent that D has done this to me, and I'm working at fixing it. I am learning to take more time for myself, I'm working on excercising and getting back in shape, I've been losing weight slowly, I have been getting dressed more often, spending time with friends and my husband, and more non-D time with my kids. I am finding the old me and I am getting my Happy back. No more diving back into bed or burrying my head in the sand. I'm gonna work really hard about not Bitching about what Diabetes is taking away from, but you can bet your ass that I'll still be bitching about what it takes away from Kortnie. well maybe I won't stop bitching, a little ranting and venting can work wonders here and there, I'm gonna own my resentment!

The guilt, that's a tough nut to crack, that's going to be a little harder, it probably won't ever go away, the article says guilt is natural and that it's okay as long as you aknowledge it and don't let it eat at you. I'll work on that, I just hope that even if I make the wrong choices for her now, she'll know someday that I did the best I could and every choice I make or made I will do thoughtfully, carefully and out of love.

Do you feel resentful, guilty or wonder about your own mortality?

31

Yesterday Kortnie had a 31 at school. It was a friggin' mess!

She checks her BG at 7:55am when I drop her off, then again at 11am when she goes to lunch, then at 2:20pm when I pick her up. Of couse she checks in between if she feels like she needs or wants to.

Yesterday she was 185 when I dropped her off, with IOB to cover the breakfast we had a 7:15 (2 20gc Breakfast Burritos). I wasn't worried. Apparently at lunchtime she was 279, they don't call me unless she's over 300. They bolused for her lunch and the correction, I can't remember the carbs she took yesterday but it was probably a pretty big bolus at least 4.45U for the correction (279-120/60). She goes to lunch 11:10-11:45 (she goes to nurse at 11 for her check and bolus). Then they go to recess 1:15-1:30pm. When they got back from recess Kortnie's friend "K" told the teacher that Kortnie was acting weird and dizzy (thanks for looking out K!). Mrs. H, told K to get Kortnie's checker out of her lunch bag while she got the juice. They got Kortnie to check her BG and 31 popped up, they got her to drink her juice and then called the nurse. They did everything they were supposed to, at this point the nurse is supposed to call me and head down to the classroom to get Kortnie. The nurse went to the classroom to get her and Kortnie wouldn't leave her desk, that's when they called me. No big deal (NBD that she went to Kortnie before calling me, BIG DEAL the 31), really, I have told them to take care of her first and call me second. So she called me, I saw on my caller ID that it was Nurse S and like always my heart jumps into my throat. Usually when she calls me it goes like this...
Me: Hello?
Nurse S: Hi, it's me, nothings wrong!
Me: Oh good, what's up?
Yesterday it was like this
Me: Hello?
Nurse S: Kortnie's 31! (panicky)
Me: Holy Crap, give her juice!
Nurse S: She already had one but she won't walk
Me: Give her more, I'm coming!
Thank goodness I only live 1/2 a mile away, I yelled at my son to get in the car and we drove down, I was probably there in less than 2 minutes, but it seemed like FOREVER, we parked in the parent pick up line and ran to her class, didn't stop to check in at the office (BAD! Really nobody cares, I'm PTO President and everyone knows me, they know I'm not there to steal kids, I have my hands full with the ones I already have, and they know better than to mess with me when I'm in D-Mama mode) Got to her class and she had her head laying on her desk, her face was all white and her eyes were glassy, and she was sobbing. (which I'm sure that crying probably makes you drop even lower, I mean it takes a lot of effort to cry) The teacher and nurse were on their knees trying to get her to drink and she was having none of it, the panicked look on their faces made me wonder if that's how I look too? The other kids were watching a movie, some were watching the show and some were watching Kortnie, they looked a little worried and freaked out too. So I knelt down at her desk and took the juice, of course to my little man Graham, this was nothing, he thought since I was down on the ground it was a fine time to jump on my back, Mrs H took him and found him a place to sit and watch the show. All the while I'm whispering to Kortnie, "please drink the juice", she pushes my hand away, "no, I don't want it, sob, sob, sob, leave me alone, sob, sob, sob" I whisper again, "okay let me check you BG" she says to me, "no, it'll hurt, I don't want to, leave me alone, sob, sob, sob", I tried to pick her up and carry her out, she didn't want that either. Finally I convinced her "okay, take the juice sip it while we're walking and I'll take you home". She agreed, I grabbed her kit and her backpack told the boy to Come On!, and we walked out, Nurse S following right behind. I heard some of the kids call out "Bye, Kortnie, hope you feel better". On the way out to my truck I yelled to the Seceratary Mrs L, "Tell Stasia and Z to walk home!" Kortnie sipped her juice all the way home, kind of slumped over with her head on the window. I checked her before we got out of the truck and she was up to 112 (22 minutes after the 31), she still had IOB, (Insulin On Board which means Insulin still in her bloodstream working), I reduced her basal rate of Insulin by 50% **Why didn't I think if disconnecting her pump or suspending or reducing earlier? Panic I guess** for 30 minutes and by 2:50pm she was 163, the rest of the afternoon her numbers were 152 at 3:44pm (Snack), 96 at 5:29pm (Dinner), 160 at 7;11pm (Snack), 295 at 8:52pm (Bedtime), 265 at 10:27pm (My Bedtime), 177 at 2:31am, and she woke up this morning at 131.

Once I got her home, she lay on the couch for awhile until about 3:30, then she was up and ready to go, feeling better and wanting to go to Girl Scouts. I let her go to Scouts because I knew her friend "K" would be there and she would worry if Kortnie didn't show up. So she went to Scouts and had a good time. D-doesn't keep her down for too long. "K" was sure glad to see her.

When my husband got home last night, I told him all about the 31, Kortnie heard me telling him and she didn't even remember 1/2 of the story, she kept saying, "No, I wasn't!" when I told him about the crying and leave me alone part. She never remembers the details of the bad lows or even the bad high's. Maybe that's good that she doesn't remember her "episodes", but it also worries me because is it something she blocks out, or something that her brain misfires and doesn't record the memory?

I asked her if she felt low before everything went down and she said "maybe a little", then I asked her why she didn't go check her BG when she started feeling low, she just shrugged her shoulders. I know it was because she was having fun and playing and didn't want to stop. Hopefully this will make her think twice before ignoring her next Low feeling. Dang it! Life shouldn't have to be this way for little kids, they should just be able to play and have fun and not worry about Blood Sugars and Juice Boxes, Bolus's and Basals, they shouldn't have to wonder if running around with friends will cause them to pass out, act weird, seizure or...worse. It shouldn't have to be this way for anybody. But it is this way and I guess I'm here to help her thru the episodes, good and bad, and I'm here to teach her to listen to her body, and I'm here to "Keep Calm and Carry On" when everyone else is panicking. FUD!!!!!

Kortnie just got home from school, I asked her if anyone said anything to her about yesterday, she told me that Mrs H and Nurse S told her that they were worried all day yesterday. I guess I should have texted them to tell them all was well, I'll have to remember that next time. What am I saying, there better never ever be a next time.

Bunk Beds/ 2 am BG checks

This is Korky in her bed, we put these bunk beds up before the big D came into our lives. I am 5'2" and I hate when it's my turn to do middle of the night checks. (I do those 2 or 3 am checks way more often than Daddy does since he has to get up and acutally leave the house to work) Korky is the younger sister and she loves being on the top bunk, the older sister loves being in her cave on the bottom bunk, there's no convincing them to switch. Notice the step stool, really it's an old broken chair, I pull it over to the bed when I have to do checks. See the shelf in the top right corner of the picture? It was orginally put up to hold stuffed animals, but if you look close you can see a stash of Juicy Juice and Smarties as well.

Here's another picture, a bit more up close, you can see the water bottle she keeps handy in this one so I put it in, not to mention she's just so pretty and cute.

And this last picture shows the "low" stash, some Juicey Juice boxes, Smarties, and a box of chocolates that she got for Christmas.


Now, here's my question. How do you do the middle of the night checks? I read your blogs and nobody really mentions anything about the kid waking up when you go to check their BG unless they wake up first because they are feeling low or high on their own. I have to say that 99% of the time I go to check Kortnie she wakes up, I almost always try to check her without waking her, but she always seems to sense it and pulls her hand away. I've tried doing her toes but usually I can't get to them and if I can she'll still wake up. I've read where some parents can even do site changes while their kid is sleeping. So, tell me what am I doing wrong? I go in and open the case, I can get the poker ready, get the strip in the machine and grab her hand then it seems as soon as just the poker touches her finger she's jerking her hand away. Then I calmly tell her, "it's time for a check". Some nights she'll get up and just poke her finger and let me collect the blood on the stirp, then she'll lay back down and go right back to sleep. On those kind of nights she's usually "normal" or maybe a little on the "low" side. But then those other nights, she fights me, she's in a sleep haze and doesn't actually get her finger poked, no blood will come out, you try to help her and she gets mad, it's a fight and by the time it's over I'm wide awake and can't get back to sleep. Usually these nights she's high. Then there are the nights when I can go in and poke her finger and she never even wakes up at all. These nights I like because I don't have to wake her up, and I don't have to fight her, but they also scare me because I'm afraid she's low and that's why she doesn't wake up. Usually on one of these nights she is either low or super tired from a busy/fun/long day. Then there's dealing with the lows, sometimes its super hard to get her to drink down a juice box, other times she coherent enough that she can even decide if she wants juice or smarties. Dealing with the highs isn't bad, I can just use the remote to give a bolus, but if I end up having to get her up for a site change, that's not so fun.

So I guess what I'm looking for is some tips on how to do these middle of the night checks, maybe we can make it a blog topic, everyone plan a blog about tips for these middle of the night checks, or if you've done one already send me the link to it. I'm curious! Any tips you want to give, how do you deal with bunk beds? How do you deal with fights? How do you not wake up the other kids in the room? How do you do the check with out waking up the D-Kid? How do you deal with the lows? (Acutally I've read about dealing with lows in the middle of the night quite a bit, doesn't look like it's much fun for anyone) Please and Thanks!

Now one more thing, for my readers who aren't D-moms but maybe family or friends. I don't check her every night (GASP!) I know! However, I do have a way of deciding if I'm going to do the check, depending on lots of factors, what she ate for dinner and bedtime snack, how her numbers have been running the past few days, if the site is new or how long has she had it on, how old her bottle of insulin is, things like that. On a normal evening we'll check her around 5ish at dinner time, then again around 8 at bedtime, then Brian or I check her around 10 or 11, or whenever we are headed to bed ourselves. It's at that 10 or 11pm check that I use all those factors mentioned above to decide if I'm going to need to do another check sometime in the 1-4am range. I'd say I probably end up doing a 2-ish-am check 4 or 5 nights out of 7.

Suggestions?

Our (I say ours, but really it's just Korky's isn't it, sometimes I feel like T1D is my disease too, maybe it is since I am the Pancreas for now) 1st D-aversary is coming up soon. The date is November 8th, a Monday or we could go with Sunday the 7th, which is the actual day of the week Korky was dx'd. I told Korky yesterday that her first D-aversary was coming up, she asked me, "what's that?" I told her it means she'd had T1D for a year now and it was kind of like the 1st birthday of her D. She got all excited and said to me, "are we gonna have a party?" I'm thinking to myself, you want to celebrate this and I want to be depressed about it. Hmmm, so I told her I don't know what we're going to do for it, my first instinct is to have a giant CarbFest, like Pizza for dinner and DQ Blizzards for dessert. However, that's not really too practical, first off Pizza Hut and DQ Blizzards for a family of 5 is not all that cost effecient and secondly, I am sure I don't want to be in the mode of battling major highs all night long, and thirdly probably most importantly, it just doesn't sound all that healthy. Catch 22 though, you gotta let loose sometimes and let kids be kids right?

So my question to you "seasoned" D moms (and Dads and those who actual have the dreaded D) is this something to celebrate? What do you do to commemorate the occasion? Do you just let it go by unannouced? Part of me just wants to be sad about it, but another part of me thinks it is worth celebrating, we've lived with this for a year, it's been a major challenge for all of us, and I think we're doing pretty good. Kortnie wants to do something fun to mark the 1st year, so I guess we should. I just don't really have any ideas of what to do. I'd love to hear if and how you all "celebrate" your D-aversaries.