oh, diabetes, you're such an unpredictable scamp

Die - uh - bee - tuss, as Wilford Brimley used to pronounce it, is so insanely unpredictable. I know I haven't posted in ages. As I say, I'm already living the dream, so I really don't feel like writing about it most of the time! But there is rarely a day that does not involve a "what the - ?" It's usually the inexplicable highs or lows that cause us the most anguish. I can deal with a pump inset that comes out before breakfast on a rushed school morning. Or the monotonous nights of checking her near midnight and at 3AM. Although her BG reading may not be predictable at those times, the waking has become so. However, when she runs close to low through the night two nights ago - and then running too high last night for no obvious reason, or when last week she was running low after lunch and this week she's high (pretty much the same lunch, same activity level and same amount of insulin...) - that drives us crazy. We make adjustments after we see trends over days, but too frequently we just have complete randomness!
This is a time of year where we raise money for a cure. It is a very encouraging time for us as we get so much support from family and friends. Please consider donating to our JDRF Walk for a Cure team. We want a cure for all type 1s!!

Traveling, with diabetes: wish us luck!

We've done this once before, but the following things all have an impact on K's blood sugar: 

• Lack of sleep from red eye, including insanely late departure time and plane change/layover equivalent to the wee hours Pacific Time
• Adjusting to three hour time change 
• Stress of needing seats moved - oh wait- that stress is just on us as the parents, right? (we're the circles in rows 23, 35 and 38.) The open blue seats cost from $74 - $94 more per seat. I don't think so.... We'll see what we can do at the airport - again, well after the kids' bedtimes. Ohmmmmmm.

Killer carbs

K's favorite bagel is the cinnamon crunch from Panera. It has, get ready, eighty-one g of carbs... Oy. Regular bagels have over fifty. Go for the donuts, people, that's all I'm saying... 

YEAH for Tegaderm!!

We seem to have to relearn how to do the beach every year. This is what K's inset looked like after our first beach trip this summer. The brownish stuff in the middle there is sand. I never even unplugged her pump that day - and the sand still got in. When she was close to 400 mg/dl after we got home is when I realized there was a pump problem and saw this. 

At our next beach trip, I remembered to bring lots of Tegaderm. Tegaderm is generally used for wound care -but we use it roughly every three days when we numb a spot on K's tush with lidocain cream (for inserting the new inset) and it has to be covered for about 30 minutes. But at the beach, the ones we have are just big enough to cover the inset to keep sand out!  This is what Tegaderm looks like for those that don't know. 

The white part peels off and it is very sticky and creates a seal with the skin. 

Our second beach trip was much warmer and K was instantly ready to go in the water, so the pump came off and a Tegaderm went on. She was hungry soon after, so the Tegaderm came off so the pump could click into the inset, during which time, she cannot go play in the sand. Then a new Tegaderm goes on until she wants more to eat or needs to be checked otherwise, and so on and so on.  Frequent checks are definitely needed during an hours long trip to the beach; if she's not wearing the pump, she's going to go high, despite the activity. So, beaches still aren't easy, but with extra diligence, it's enjoyable for our K. 

Summer programming update:

I went every day last week and yesterday at 9:45 - the time K checks herself - as health clerk dosed her with meter/pump, at first, walking her through it and then sitting there quietly in case she had questions. Today, I told health clerk I'd come because I know she is more comfortable with me there and it's not that inconvenient because my gym class ends at 9:30 and the school is on the way back home. When my phone rang at 9:44, I was a block from the school and said "I'm almost there." The health clerk said, excitedly, "I did it!" She checked her early because apparently K was feeling low, so went a few minutes early to check herself. It was perfect because she wasn't low and the health clerk dosed her without me around - proving to herself she could do it. It was the perfect situation. 

Illusory black bag

As cute as K's heart bag for her diabetes supplies is, it was big, heavy, and poorly spaced and even Kate figured out that our original black bag (here's pic of the second iteration we've had - it's FABULOUS) is much easier to carry and sort through for what she needs. We have always called it the "black bag", not the "diabetes bag", not "K's bag", not "K's diabetes bag" - and we all know what we're talking about. (So when K was using the the heart bag, we would stutter, "Do you have the b-heart bag?", or more accurately, "Do you have the b-stupid ass heavy heart bag?"

But I have been neglecting this bag - and by so doing, neglecting my daughter! Ugg. My three kids and I were in Sacramento several days last week visiting family. We drove to Vacaville one morning to have breakfast with my dad and then went to a nearby Starbucks to work on his computer (it has wifi, the Black Bear Diner does not). Between the three kids, minor computer issues, confused yet appreciative father, token tea drink ordered to be an official customer using wifi, I was plenty distracted. We bid farewell to my dad, drove East on I-80 (though all southern Cal freeways begin with THE, "The 80" never sounds right) - and I realized somewhere along the Yolo Causeway - a good 30 miles east of Vacaville - that the black bag was not in the car. For those of you who do not know this area, being on the Yolo Causeway is like being on a long bridge - there are no exits, off ramps or turn arounds. I had to get back into Sacramento County, pull off, confirm my fears - and get back on the freeway going west, Again. My eldest son used my phone to find the Starbucks we were at, called it and I drove less stressed knowing that they at least had the black bag. 

As if that wasn't bad enough, I did the same thing again yesterday - this time at Panera Bread in Pasadena! Although my husband was with me this time, I cannot blame him because 1. I was the one in possession of it and 2. it was Father's Day, so he does no wrong. I at least figured out that we forgot it well within a 30 mile radius of the local restaurant. 

Why am I doing this??!!  We're nearing three years and I have only left her bag in a public place Once before! - and it was also fairly recent (at K's gymnastics class). Guess we'll blame my brain. I need to do more sudoku and crossword puzzles. 

I have no update on summer program, except I was there today, walking health clerk through dosing K. We'll see what the next couple days bring... 

Summer program update

So this morning, I met with the director of summer program and health clerk for the site. Learned that health clerk is not subject to same union rules, etc because she's being paid by educational foundation, not district. So, she's willing to try to learn to use pump. She said she'd decide after two days of me walking her through it. 

Wish us luck. 

Summer programming

I'm not even calling this post "summer camp" because that alludes to a full day scenario - which I did not seriously contemplate for my daughter this year - not because she could not have handled it emotionally, but because we did not know how any of them would deal with her diabetes. Exercise, food, swimming, heat, OH MY! Last year, when K's brother's did a local "outdoorsy" camp that ran five full days a week, we considered it for her. But despite being the most expensive camp in town, it had no nurse and no way to deal with diabetes. I had a lengthy conversation with one of the camp managers - whose own husband has T1d, so she knew all about it - and how unequipped their (pricey, did I mention that) camp was to deal with it. It was not close enough for me to repeatedly visit to check and dose her, and I'd be constantly worried about the non-stop activity affecting her blood sugar.

So, earlier this year, when the brochure for the annual local educational foundation's summer enrichment program came out, we said "that's it!" It's a four morning a week program at a nearby elementary school, the boys can also take various classes their interested in and we won't have to stress. A couple weeks ago, I reached out to the program to let them know I'd need to meet with the nurse and teacher before the first day. The director was very nice and said they only had a "health clerk" on site but she'd reach out to the director of health services about how insulin dosing would work and get back to me. (Background on this issue: CA Nurses have litigated this issue and the courts are currently on their side - only nurses can provide insulin. Health clerks can check blood sugar and provide necessary sugar or emergency glucagon shot but cannot lower blood sugar or dose for food - even via insulin pump. An older child could do this herself, but we're not remotely close to that.)

So I got a call today from the director of the summer enrichment program saying that there is no nurse on staff this summer so someone else (ME) would have to come to campus to correct her blood sugar and dose her for snack. (This is a private program [ie, we pay for it] so it's not held to same public school standards.) For some reason, I just lost it. I was crying on the phone with a woman I've never met. I've cried at least two times since and I'll probably cry before I'm done typing this. It's not the end of the world if I have to go deal with diabetes every day mid-morning; this is one reason I don't work - so I can be the on-call parent, and the school is a mile from our house. But it's more the point of it all. I thought this would be a seamless experience. The inability for someone to correct her BG and dose for one snack we pack (and for which we count the carbs of) reminds me how hard summers are going to be until we trust her doing everything herself. It reminds us of how big T1d is, even though she can do everything other kids do. She is such an independent child and I want her to have the camp experiences my sons have; she already hasn't. Additionally, K does better when I'm not around her setting dealing with her diabetes. Anytime I went to her school for that reason, we had conflict and it was disruptive. Running away from me was a common occurrence.

Once I was composed, I wrote to the director of the program and the director of health services and encouraged them to find an adult volunteer to dose our child (teacher, class aid, principal...) (the law allows for this), or have the health clerk do it (why can't she be the volunteer?) since there are no nurses available, or, worse case scenario, my eleven year old son can dose her. I also need to check with the DOC (diabetes online community) for how other families deal with this. I know I'm not alone, but we haven't had to deal with it before!!!

Promise to update end result.

Hope

I've heard the term "artificial pancreas" since K's diagnosis, but it seemed too sci-fy and, frankly, discussed for so long that I never thought it would really happen. But of late, I'm reading more and more about the artificial pancreas being close to market!! Here was one recent article: an interview with a woman who wore an artificial pancreas for several days. It includes links to the blog she kept.

If what I'm reading is correct, K could be living almost normally before she's done with elementary school. She'd be wearing a bevy of devices, but she could eat without counting carbs! She could exercise and do normal kid activities without the constant fear of going low. She could go through her school day without nurse visit interruptions. She won't have to wait to eat carbs because the "pancreas" would keep her BG from going too high. And if her BG is kept in a normal range, the long term risks of diabetes would be substantially less likely to effect her! She could sleep through the night without getting her fingers pricked. Which means my husband and I could sleep through the night!! All of these concepts (and more) seem so foreign that it's hard to comprehend! 

We have hope.

Bummers and Silver Linings

Bummers with happy or slightly happy endings:
1. Group Sleepovers: Although it's not super eminent, signs like the one to the left (at K's gymnastics studio) bum me out for my daughter's sake. Although at age six, we likely wouldn't let her stay for a big group sleepover anyhow, I am always concerned about her future. The point is, she could not spend the night at something like this. Who would check her blood sugar during the night? As one mom pointed out to me though, I could. So, though not ideal, we could spend the night at something like this :)

2. Non-carb meals:  this family hates non-carb meals. But, we have to do them sometimes because either K's BG is too high to eat carbs anytime soon (which is probably when she hates having diabetes the most) OR as was the case this morning, we need to test why her BG is rising so much consistently at the same time of day. Her BG has been high at her mid-morning check for over a week now (between 200 - 300 mg/dl). So we have to figure out, is it because her breakfast ratio of insulin to carbs needs to be lowered (a lot...)? Or is it because her basal rate (the "background" insulin that is always dripping into her) is too low at that time of day? I lowered the ratio once and not much changed. So, the best way to check this is to serve non-carb breakfast -for all of us, because we try to be fair. Although the kids grumbled at the site of eggs and avocado slices for breakfast, they complained less than they normally do. And the silver lining is that a. we easily determined that her breakfast ratio needs to be lowered because her BG was a fantastic 120 mg/dl this morning at school - enabling her to have a carb snack (which she doesn't get when her BG is over 200 mg/dl at school) - AND b. I got to talk to my favorite CHLA nurse, who only works one day a week (semi-retired) who agree to lower her breakfast carb ratio, just a couple grams at a time, which is what we had already started doing over the weekend. (this ratio is usually the lowest because kids are very insulin resistant in the AM). 

3. Forced chaperoning: K's teacher actually did not want chaperones for the class field trip yesterday, except for one - me - and it's not because of my delightful personality or fantastic rapport w/ the children. There was one reason I was strongly encouraged to go - because the district would rather the nurse be at her assigned schools rather than accompanying a class to the local children's museum. This all rubbed me the wrong way, but, in the end, I had a fun, albeit exhausting, excursion with a bus-full of 5-6 year olds. I enjoyed sitting next to K on the bus for her very first field trip and capturing in my heart and with a camera the joy the children had, that no other parent in the class got to experience.

what the...?

So K has been home sick three of the four days so far this week. Ugg. She's not that sick and that's not why I write. It was just an explanation of why she was home for her mid-morning check. She was quite high midmorning: 256 mg/dl or something. About an hour or so later, she said her tummy hurt and I checked her and she was 54 mg/dl. Another "ugg". No idea why. She had 10 grams of carbs to bring up her BG. Checked her about half hour later and meter read "200 mg/dl". Thinking it had to be a mistake, I rechecked and it read "232 mg/dl" . So many "what the...??" How was the meter so off?! But whether it was 200 or 232, how could 10 grams take her up so high?! She'd had NO carbs since an early breakfast!  Luckily, the rest of the day wasn't AS wonky... Wonder what tomorow will bring?

Tough questions

"Mommy, what part of my body is broken again?" K asked me as she was gettng out of the car yesterday. She was very matter of fact about it, not sad. I explained like I have before that it's her pancreas that doesn't work right (that's the simple version - and all she needs for now). She followed up with, "But the rest of me is good, right, like my heart and lungs?" It was the first chance I got to explain, after an emphatic "YES!" that one reason we have to check her so much and follow the good habits we've worked so hard to establish is to keep her other organs and limbs healthy. She took it in stride, and didn't ask anything further.

Anyhow, I loved that question and had to write it down before I forgot. It has been so long since I've written and there are so many things I've wanted to write down and/or share but I just don't seem to make the time. We've had some good diabetes moments since the last writing. For one thing, we went to diabetes family camp at Camp Conrad-Chinnock in January. We all had a GREAT time. The kids loved playing with other kids and playing in the snow, including sledding, sledding and more sledding. The hubs and I enjoyed connecting with other type 1 parents and just being around other people that "get it". I'm very happy we made a camp connection for K. She could go by herself as early as seven. I'm not sure if we'd do that, but we know now that she'd be in good hands. I think if we do one more camp together as a family (maybe this summer), she'll be clamoring to go by herself the following summer (the boys might have strong feelings about that though... since they loved it too). After the trip, I asked K if she liked being around other kids with diabetes and she said, "I don't care who does and doesn't have diabetes, Mom." But I know that's not true; she does feel very normal at school and the like, but I know she appreciates, in some small way, seeing others like her, checking their BGs, wearing pumps, talking carbs. K also loves having a teen girl with diabettes babysit her.

Earlier in January, a good friend kept all three of our kids for a night!! It started early, like 5ish and my husband and I actually had a night to ourselves!!!  However, it's never truly away. I was texting with the friend through the night and early morning - and that's just the way it is. I wouldn't have been comfortable if I hadn't heard from this friend and so many decisions are based on experience. So, as great as it was, it was a fair reminder that we're never truly away from diabetes. Doesn't mean we won't keep trying though: another friend is taking K one night this weekend and the boys will be away the entire weekend!!! 

Yesterday, we went to a local JDRF symposium. Great panels, speakers, information sessions, visiting with some people we knew and some we'd never met - but can easily connect because we have one huge thing in common. It was a good day. But, long story short, we somehow came home with someone else's test kit - that looks exactly like K's. It got mixed up in the childcare room and my husband only figured it out when I complained that the meter was "not communicating" with the pump. We tracked down the other family through the pump company and we exchanged meters this morning, meeting about half way between here and their home near Long Beach. It was inconvenient, and scary - because when K's BG was checked at the symposium, her BG was high, but she was checked with that other meter, which is synced with that other pump, so when K was dosed down with that meter, another child got that insulin - and what if that child wasn't high!? If that child was low, it could have been a deadly dose!!!  I was beyond thankful to hear from the other mother that her daughter did not go low. PHEW! So we both learned to better label our meter cases at these events with a bunch of diabetics in the room. I also plan to glam up the remote itself before another such event. I also learned that we chose the right pump: dosing from the meter remote is so much more convenient (assuming you're dosing the right child...) than fiddling with the pump to give the insulin.

I'll try to write again sooner rathe than later. There's always something...