Decided to write about our week last week, it was quite the doozy! Mixing hormones and puberty with diabetes can easily be described as throwing darts in the dark, not easy, not fun, and definitely dangerous. No one person I have ever talked to has expressed their pure love and joy for this mix. My job is simple, protect my child and keep her alive. If only it were as easy as it sounded. Running on little to no sleep more than a week into it, I sit here typing this as I doze off.
We got our new replacement pump/meter in two weeks ago. It was great news considering her old pump wasn’t responding when hitting the keypad (which, we think may be part of the problem when she swears she doses, and it doesn’t show). We were excited to get the issue resolved and even more excited to get the new pump shipped to us while she could still use her old pump so we didn’t have to go ‘pump-less’ for a few days. If I haven’t expressed my undying love for her pump, I will do it now. We love it. It is a blessing, or I guess the biggest blessing thus far in her regimen for T1D. It works for us, fits us and has given her freedom (well, I say freedom, but perhaps just a little more control in a world that you will never have true control…perhaps the illusion of control, but that works for us.)
Sunday we were cruising along…until Kinzie just started sky-rocketing out of no where (which isn’t a surprise…we do great for a week or so then all hell breaks loose and we are back to square on trying to fine-tune her basal rates, ISF and I:C). So this wonderful combination made for a VERY long day, long night, and long week. No matter how many site changes we made, extra injections and doses of insulin, we couldn’t keep up. Fun, right?!? I mean, who wouldn’t want to sign up for this? Challenges every day, surprises around every corner…paradise. When I once said I thrived on challenges, I didn’t mean this. Monday came and went and Kinzie stayed home fighting her high BG, ketones, and even attitude (tweens, who would have thought it was like deciphering an ancient code and with one wrong action, you are toast). Ketones are basically by-product from her body using her fat for energy when there isn’t insulin or enough insulin…it is poison, it can be deadly, and has to be monitored, flushed out with fluids and insulin. That is why many Type 1 diabetics are thinner…their body gets eaten away at times out of necessity when it doesn’t have what it needs to function. Cannibalism…perhaps I could compare it to that. Kinzie gets severe side/tummy cramps, gets emotional, tired, cranky, no energy as a side effect of ketones. Ketones present…she doesn’t go to practice, go to school or exercise. We do our couch and chug method…where she is on the couch chugging water safely in my view.
All week-long we fought ketones and high blood glucose. So that meant staying at home, once again, missing out on school, fun, sleep, anything wonderful. It was filled with fluids, site changes, basal increases, temp basal increases, ISF checks, constant pump downloading, monitoring, monitoring, monitoring, tummy ache, a few tears, site changes, extra injections, monitoring, having to buy extra strips since insurance finds it only necessary to cover only up to 10 strips a day. (Which with that I would like to insert a ‘suck it’ to insurance right here. When my job is to keep my daughter safe and alive they are only trying to cut costs at the expense of the health of my child.) Kinz and I didn’t sleep much, and once we did fall asleep it seemed like it was time for another check and another dose of insulin to keep BG from going higher and ketones at bay. I am getting quite good at navigating our floors at night with extreme smoothness and speed, as if I had night vision (but I can only credit it due to repetitiveness), and getting good and holding my cool/laughter when Kinzie starts to murmur or get confused during our night checks (quite entertaining, she says the darndest things). It was a continuous cycle…but our rewards were greatly appreciated…my daughter stayed healthy, she is alive, we avoided hospital, and mastered the skill of functioning on little to no sleep. Weeks like this I find it hard to even relax at night. I am always on edge at night, but nights with extreme high or extreme low is pure exhaustion, anticipation, and hell. Join me?
It was Tuesday or Wednesday (I think) we realized that our stinking pump setting was off due to a glitch in its software, and Leap Day threw it off….date was wrong, thus giving her wrong bolus at the wrong time of the day. Which started a downward spiral into the depths of high blood glucose…or what I could relate to as hell. Once it hit, and blood glucose results were high, it catapulted into this snowball effect, even though we caught the glitch, we had to catch up on her BG and combat that problem that occurred. Then our lovely ‘new’ meter decided to have its own glitch…which it wouldn’t log any of Kinzie’s BG…so any time I tried to download her meter/pump to look at trends and fine-tune our settings, I was met with a blank page and about a thousand questions in my head. I wanted to scream, cry, perhaps lash out in an all out temper tantrum!!! Why now?! Yes, I will have to admit I am not the most graceful of beings when it comes to wrenches thrown into my plan…I retalliate in the most ridiculous of ways.
Then comes Friday. NO KETONES!!! Only to be met with constant lows…but thank goodness it was only ‘low’ not ‘low-low’ …we much rather prefer ‘low’. So we once again monitored, monitored, monitored, stay home, ate, ate, ate, temp basal decrease, download pump info, pray (fingers kept crossed) that we could stay on top of it, and didn’t sleep…once again. Okay, so maybe we slept from 10:30 to 12 and then again from 1:30-3 (but do I even count 30 minutes to an hour of that,as it takes me at least that to wind down and try to sleep…still being on ‘alert’ mode?) Either way, once could say we didn’t enjoy the week. We traveled that night to Kinzie’s dance competition…ketone free. Once again, met with sleepless night with extra checks…only to wake up early (wishing I didn’t even try to sleep since getting just a taste of sleep makes it harder for me…I seem more tired). After 2 entire bottles of grape Gatorade and a temp basal decrease (as that is her preferred flavor. A mom’s gotta do what a mom’s gotta do) we got through the night.
Saturday she did amazing. Her first check at the competition was 500!!! Which we have never met since diagnosis. Sheer panic set in and I wanted to pull my hair out! I thought perhaps rebound high from her Gatorade. So we dose. Kinzie skips off the bathroom…and wouldn’t you know her leotard had caught her site and pulled it away (which she had argued over and over with me, I tried to move her site to her tummy telling her that costume changes would more likely pull site off on her arm…she refused to let me move it. MOM KNOWS BEST, case and point)…thus a high-high BG. So glad she caught that…her 500 was corrected in less than an hour, and I was able to breathe for a moment. Only a moment. We were then greeted with lows…and our occasional ever-so-hated ‘low-lows’. So our day pretty much went like this….Costume change, BG check, down a pixie stick, perform, chase with protein, BG check….wait….costume change, hair re-do, BG check, carb to bring up BG, another check, temp decreases all over the place, BG check, chased with more carbs. Literally checking her BG as she is entering the dance floor with pixie stick, Gatorade and glucagon kit on hand. All the while she smiles, she laughs, she performs, she rocks!!! Have I mentioned how gracefully she faces this disease before? Have I mentioned how in awe of her i am?
That night, again, met with lows, soda, and checks. We brought her BG up enough to sink into bed at 3 a.m. waking in two hours for another check…and I had one eye open the rest of the time to monitor her breathing until 8 a.m. where we greeted the morning, once again thanful for all that we are given. Have you ever breathed in a great huge breath, and all within that one action you realize that life itself is more precious than anything in this entire world and you know that you were meant here for a greater cause? I do that everyday…knowing Kinzie is here for a much greater cause.
Last week was simply controlled chaos. We have dealt with this long enough we know our routine for any given circumstance that we have so far faced in the whirl-wind world of Type 1 Diabetes. So what we did wasn’t new, but it is just as tiring, if not more. I feel like the more we are faced with weeks like this, the more tired I get. It is hard to recuperate after a hard week, because type 1 Diabetes doesn’t rest, so i don’t get time off to refuel…I/we simply just go on and continue to do what needs to get done. Sometimes I want to beat the crap out of Diabetes…if only I could.
This week is a new week, and so far Kinzie has made it to school, managed to be ketone free and no low-lows or high-highs. Dare I breathe? Dare I speak of this? In fear to jinx us back into another week from hell…which oddly enough makes us absolutely adore our ‘good’ weeks, them even being riddled with not much sleep, tons of monitoring, always on alert, constant changes….the rigors of Type 1 Diabetes. Our life with Type 1 is anything but ‘normal’…but we have been given it for a reason. Every day I pray that we remain vigilant, ever-learning, healthy and always grateful. Until next time, be thanful for the sleep you do have, when you have it…never know when you will get it again. Last night, I slept 5 hours, interrupted, but it counts! Hooray!