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.