Sleepwalk rudely interrupted

So K ran very high after dinner (in part because her infusion set came out at some point and we hadn't realized it; in other part - who the hell knows) and had come down we checked her at 11:30, but still too high to be comfortable letting her go through rest of night without being checked. I set my alarm for 3AM, as one of us does most nights. When the alarm goes off, I have to get out of bed to turn it off (learned that lesson after too many skipped checks), so by the time I'm out of bed, I know that I need to go check our daughter's BG. We're like robots when we do this - it's all so routine and we hardly wake up during it. However, when I checked K and her BG was 52 mg/dl - I was suddenly wide awake! I let her finish off an opened juice box (guessing about 9g of carb) and gave her a 4g glucose pill. Walked back to bed, fell asleep until alarm woke me up 15 minutes later to recheck. Up to 107 mg/dl. Good! Back to sleep so quickly that when my alarm went off at 6AM I forgot I had checked her that second time. Yawn.

There's always some diabetes related event going on here. I'm usually too busy to write about it. On the good news front, our Walk for a Cure team raised over $12,200 for JDRF.

It gets old and it never gets old...

Last night we checked K about 10:30 (earlier than usual) and her BG was 111 mg/dl. That's a great # but because it was so early, I still needed to check her during the night. My alarm got me up at 3AM (new strategy is to keep phone on the floor because I have to get out of bed and crouch down to get it - thereby waking me up enough to realize that I have a task to complete - not just plop back into bed); somehow, her BG was a whopping 265 mg/dl!
This morning, hubby asked me at wake up what her 3AM BG was and I guess I mumbled her number and he said, based on recent trends, "I knew it! I thought she'd go low." I more clearly articulated her high 3AM number and he was then as perplexed as me. But that's the thing -- it could have gone either way.
Her BG was down to 197 at 6:25 - but still too high to be able to eat right away.

Our Walk to Cure Diabetes is one month away from today. Will you consider joining us or donating to our cause?

Weekend away and reality check

Before bed last night, K went quite low (49 mg/dl).  Guess we screwed up the dinner dosage, or was it the activity in the yard with her brothers that affected her? Or was it the walk we took after our meal?  Then she went inexplicably high by 3AM and then, this morning, woke up much higher than normal.  She was insanely high mid-morning at school (300s) - and she did not get her carb snack because of that - so let's  see what she is when I pick her up soon (early dismissal Monday).  
 

That was my reality check because I had the good fortune to go away for a few days with girlfriends and came back in time to help with dinner last night.  Over the weekend, we hiked, we talked a lot, we napped (well at least I did), we read, we ate well, we played cards…  It was great for all of us to get a mothering break and it was additionally great for me to get a diabetes break. K was in good care with my husband so I never had to think about her BG.  It was extraordinarily liberating, a feeling I don't have too often. However, it also comes with pangs of guilt.  I AM able to escape diabetes management, but my daughter cannot, ever.  It breaks my heart.  

We hope and pray for a cure - and we Walk for a Cure. Please donate if you can.  JDRF is our best hope. 

a snippet of our fun...

A day in the life: K had a 455 BG this afternoon. No idea why but it explains her defiance. Changed her pump, dosed down, now we have to wait a long time to eat or just do eggs, tofu, veggies, cheese (ie non carbs) for dinner. Good times, good times.

Raising money for JDRF gives us hope. We're walking again this year. We'll keep walking until we have a cure. This year, it's November 11. Please join us - or donate if you can. To learn more, visit our team page.


Will write soon about all our big events of late - such as starting school and soccer!

Second Diaversary

Well, we made it through another year. That means K has made it through another 3000 finger pricks (give or take) and over 120 pump changes. We've all made it through more than a dozen or so delayed meals (because her BG is too high to eat carbs), or worse: the dreaded non-carb meals. 

Not a lot has changed since last year: http://www.theysayitgetseasier.blogspot.com/2011_07_01_archive.html, except we found a responsible teenager with diabetes who babysits for us upon occasion. We were able to go to an afternoon wedding in Orange County only because this girl was here and able to do the carb counting and dosing necessary. K has also had a couple sleep-overs with a friend who's mom is willing to do the fun night checks - as well as carb count for dinner and breakfast. She also has frequent play dates at another friend's house who's mom is great about checking and carb counting for snacks. These experiences make K feel like a "normal" kid and we are so thankful for them.

It's actually hard for me to reflect back because what's coming in the next month is slightly overwhelming (for me). First, K's time at her preschool is coming to a close. The staff there has handled her diabetes so seamlessly. It will be a hard goodbye for ME because of this and because it's been such an amazing early educational experience for all our children over the last eight years. Additionally, on August 22, K will start kindergarten at the public school our middle child attends and our eldest child attended through this past school year (yes, adding to the emotions of our youngest child - our child with diabetes - starting kinder, is our eldest child starting middle school...).  I haven't thought much about the start of school this summer, which I'm pleased with, but now that we're less than 4 weeks away, I'm starting to wonder: what will K's BG check schedule will be? (Hubby and I spent half of our date lunch talking about this yesterday.) How will she know when to go to the nurse for her regular checks? (Will nurse get her? Will teacher send her? Who's alarm will be set?) What happens when she feels low and the nurse isn't around? (Who should we train to check her as a back up?) Should we pack her own snack or let her have who-knows-what snack like the rest of the kids in the morning? Should we tell the class that K has diabetes and what it means?

I learned of our new school nurse this week, but she won't be back from summer vacation until two days before school starts... We won't have to "teach" her diabetes the way we do other people in our life - but she's not familiar with K's pump, or K herself (unlike our recently retired nurse). I'm trying not to panic. The beauty of not working is that I will be living at the school if need be to make sure it's all going smoothly. 

So the passage of time continues, another year has come and gone. These children are growing and having awesome experiences (it's been a great summer). I just have to learn to be flexible and know (with constant vigilance), it will work out.

Waaaaaa!

Let me just clarify that this blog is about ME - and my journey parenting a child with type 1 diabetes. My daughter is Awesome, yes with a capital A. Some people might say I'm awesome too, capital A optional, in large part because I "am strong". I don't need to pat myself on the back, but in sum, I'm able to hold myself together pretty well (for contrary evidence, of course, see blog from last week about crying at the gym...). I cannot be down in the dumps all the time because it wouldn't be good for ANY of us. Life is what it is, our circumstances are what they are, moving on. C'est la vie. I don't speak French, but I think that applies here, right?

But.... every now and then, being a surrogate pancreas does catch up to me - and today is one of those days. In reality, there are a confluence of things. 1. I'm tired; 2. This morning during a very mundane dance move at a work out class, I tweaked my already screwed up right hip so much that I cannot even walk normally; and, 3. among other daily "life" events - diabetes threw us for a curve ball today and I'm just SICK of IT! I won't go into it too much, but, long story short, because her blood sugar had been too high for too long, I had to go to K's preschool and change her pump - during lunch time  - and so she couldn't eat the carbs (ie yummy things) in her lunch until much later. When I got to her, she was noshing on her celery and in fine spirits, but I felt so bad as her lunch box was wide open and the mango and peanut butter pretzels were just staring at her, as if saying "ha ha you can't eat us!" I took out the rest of the celery from the box, then closed the lid and pushed it aside. I went to the director's office to change the pump (without K during this task) and, during the course of our conversation, she said something to the effect, "I don't know how you do it." She then held and distracted K as I put in her new pump inset (without numbing because I needed her BG to come down immediately, not after waiting 30 minutes for the spot to be numb from lidocaine cream).

I had about 20 minutes before I picked up the carpool, so I had time to go to Starbucks and feel sorry for myself. How do I do it? Diabetes management suck so much ass. Maybe K's strength is what keeps me strong. I dunno, but today, nothing can lift me up (certainly not my right hip...) I'm just tired of it.  I'm tired of diabetes always on my mind! I'm tired of anticipating the phone calls from school and getting anxious if it's 10:06 when I normally get the call at 10:02. I'm tired of putting the kids to bed, yet continually remind myself to check her "soon" once we know she's asleep. I'm tired of staying up late - and tired of waking up at 3 AM most nights out of the week - to check her BG. I'm tired of counting and weighing carbs. I've never been able to diet religiously because I hate counting and logging calories - now I do a very similar thing, but for my 5 year old. I'm tired of telling my daughter to wash her hands so we can check her BG, and tired of telling her she has to wait to eat. I'm tired of carrying her black bag everywhere we go. I'm tired of guesswork and trying to understand it (like when she was close to low last Sunday before bed after a VERY high carb birthday meal for and I knew she'd go high, so I had to argue with my husband who wanted to give her sugar because she was close to low and had a ton of insulin "on board". He luckily listened to me - and I was right, sadly. She was later in the 300s for too long.) I'm just tired of it all. But I press on for the fear of diabetes related complications down the road, and normally, I even do so with a smile on my face. But not today.

Crazy nights here

Last night, K's BG was great a little after 11: 98 mg/dl. We felt that we could let her go through the rest of the night without checking her, but just after 1 AM, I woke up to, "My tummy hurts!" from her room. I zipped into her room, checked her BG and she was low (she's never wrong if it wakes her up in the middle of the night :( ). I gave her almost half a juice box (about 7 g of carb) --and promised her she'd feel better in just a few minutes. Just over 10 minutes later, right as I was drifting back to sleep, I heard her yell, "YOU LIED TO ME!" (we've learned that one is not prone to good manners when enduring low blood sugars, especially during the night)   I hustled back to her and she said her tummy still hurts. I checked her again and her BG went DOWN(!) to 53 mg/dl. Next quick sugar source, 1.5 glucose pills, popped into her mouth and she's content.
Rest of the night was seamless and K's BG was good when she woke up a little after 7.
(I won't bore you with the never ending "why?" we contemplate regarding her low BG. For the previous two nights, she'd been running high. And she had pizza for dinner?? - which normally stays in one's system for a while [we know of a family that does a 12 hour combo-bolus for pizza])

Oy

That's the only heading I could come up with that does not include an expletive. So, while in the gym bathroom yesterday morning, my phone rang. Only because it was my sons' elementary school, did I answer it in that locale. It was the school nurse (hereinafter "Nurse Wonderful"), who before she could tell me that one of the boys was in her office with a bleeding head, quickly relayed that she's retiring. --And the reason this is important enough for her to call me with this info, unlike pretty much anyone else in my life, is that it means she will not be our nurse next year for K. Nurse Wonderful let me know that she had just told the school principal and wanted me to know right away - and was told by the director of health services (her boss) to let me know that she would be replaced and K will be fine. I told her congrats on her retirement and appreciated her calling me, as I sputtered through my (selfish) tears (yes, in the gym bathroom).
See, we have finally been comfortable with K starting kinder next year at the boys' current school. Despite there being NO other diabetics at the school and despite that Nurse Wonderful will not be at the school full time (no nurses are in these delightful budget cut times we live in  --except, in our district, a very small school with the medically fragile population), we were comfortable with K there next year because we were reassured that there would always be a nurse available for K: Nurse Wonderful or the nurse across the street at the middle school who could always run over. And although we've never met the nurse at the middle school, we were fine with this scenario because we love Nurse Wonderful. Not only is she an easy person with whom to talk, she is great with the kids with the various injuries or ailments they've had at school, she has always been supportive on our diabetes journey - and eager to learn more, including taking a class at CHLA to learn K's pump. We also knew that K was comfortable at the school that she's been dragged to since she was 9 months old and we know staff and they know her and her situation.  
I called Nurse Wonderful's boss to confirm that she will in fact be replaced (which, as we both know, is impossible, because she's SO wonderful) because she could save a lot more money  --and spread nurses even more thin -- NOT replacing her. She said that it is "her plan" to replace her. She knew I could sense her lack of certainty with that response so she assured me that K will be taken care of and also assured me that Nurse Wonderful's replacement, who cannot even be considered until the summer (begin more heart palpitations on my part), will also take the pump training class and I'll have a chance to get to know her/him. Of course, I'm thinking, "when, a couple days before school starts?!"
I have calmed down since yesterday.
Signed, that random lady crying in various places in the gym on Monday but who has calmed down a teeny bit since thtn

Monday Night Madness!

FYI: I did give her 2 glucose pills
before taking this picture!

Less than 2 hours before K's BG dropped this low, she was a whopping 362 mg/dl. About an hour and half before that, she was 348 mg/dl - so, in situations like this, when her BG is over 300 and goes up further after insulin correction and no carbs, we assume something is wrong with pump accessories. So, upon the 362 reading, I gave her a shot including dinner insulin, removed the pump to change the insulin, tubing and inset, and hoped for the best.
The insulin from the shot seemed to work: 50 minutes later she was 278, but still too high to eat dinner. After about another half hour, she finally ate dinner (7:30 PM) - but immediately after eating, K moseyed to her room and lay on her bed. I followed her and based on her apparent tiredness (I thought she was about to pass out), told her she could bathe the next morning. I asked her to get up to brush teeth but she said her tummy hurt too much (classic "low" symptom for her). I never thought she'd be low, but, because she did seem rather out of it, I checked her and got the delightful 38 mg/dl reading. I was floored. After two glucose pills, some plum, and candied almonds: she bounced up to a good 119. And I was exhausted and confused.  Oh and did I mention I was single parenting? Yeah, the hubby was in New York for work.

Swings

For days, K's blood sugar would not come down during the night (she lingered in the 200s despite corrections). We have slowly increased her basal during that time. Now, the last two nights, she's running too low through the night (60s).  So, we'll now decrease the basal rate - and I guarantee I'll be writing in a week to say she's running too high...
(My new goal is to write on the blog a little more often, but less words)

Dance my pretty

Something about the way K flowed about in her beautiful "Shabbat dress" tonight made me think of this great pic from Sept, 2009, when she was not even three years old. Like looking at most of her pre-diabetes photos, it makes us a little sad though.  

So excuse me while I send my thoughts out rather stream of consciousness via this blog tonight. I'm the only adult home (Marc's hanging with old friends), so I need somewhere to process this. We had a lovely potluck dinner among friends and acquaintances, and Israeli dancing too. K's blood sugar was a delightful 77 a good half hour before dinner. I let her have about an ounce (or less) of typically verboten juice right as dinner began. Dosed her for 40 carbs as a "50-50 combo bolus" - being she got 50% of the dosage up front and the remainder was to be dripped in over the next 2.5 hours. The combo works well when she under-eats because we can cancel the insulin, rather than force her to eat the equivalent carbs for which she was dosed (that was our life with injections) --AND the combo works well for tricky, slower digested foods, like bread and pizza - of which there was both at this dinner. 

So, she ate challah (how much, I don't even know), 2 itty bitty slices of pizza (worth what? - dunno, 20 g??), fruit (maybe 6 g worth??), tried mac and cheese that she didn't like - and then danced like a machine with her "boyfriend". Oh, then out came the dessert and thankfully she chose the individually packed ice cream, which had nutrition label - mango flavor. I'm thinking "awesome" - but it was 34 freaking carbs! So, I gave her more insulin - to cover 20 g. Too much? too little? I dunno...

So, once K goes to bed, she pulled the too frequently chanted at this time of night, "My tummy hurts!" (This is delay tactic #3, behind "I need fresh water" and "Please sing another song".) So I checked her BG (around 8:30) and she was 94. Nice, I think, but there's still a lot more insulin "on board"  --ie in her system. I tell her she's not low and kiss her goodnight, again. About an hour later, I checked her again and she went down to 83. That's not too low, but will she keep going down? - or will she go high? - with that pizza and bread finally rearing their ugly carb heads - plus she tends to go up this time of night anyhow. I'm keeping this blog post open and will update it with the next BG check.

10:33: nice, she's back up to 92. Doubt she'll go down now :) --now, let's hope she doesn't go too high!

Will hitting "publish" on this blog jinx me?

BDD

BDD = Bad Diabetes Day
In the big picture, most days are bad. The days when there are no highs or lows, I want to photograph my log book to share with the world. "Look! It does happen once in a while!"  But this past Saturday was BAD. Without blaming it all on my partner.... I will. But, it could have happened to either of us and he handled it really well once he realized he screwed up - probably better than I could have.

K had been high through the night Fri - Sat morning (241 post dinner; 205 at midnight; 282 at 3AM; and 253 at wakeup). Marc decided immediately to change the pump, which we were scheduled to do that AM anyhow. Because I have been sick, he didn't want to wake me to help out, like we usually do - though we both have done it on our own many times. "Changing the pump" as we call it - is not changing the actual pump, it's changing all the disposable parts to it, which have to be done every 2 - 3 days. It involves filling a new insulin cartridge, properly replacing it into the pump, priming the insulin through the tube that will connect to Kate, and, the least foolproof part of the task, injecting the inset into K's hip area. This must have been where something when wrong with Saturday's change, though everything looked fine. Marc corrected her high BG after changing the pump, then dosed her for breakfast: French toast. K seemed perfectly fine. I left for my hair appointment a little after 10 and Marc checked her at 10:35. At that time, the meter indicated that her BG was too high for it to compute. He checked her a second time to make sure it wasn't a mistake, but he got the same reading. This means that her blood sugar was over 600!!  It hasn't been this high since the day she was diagnosed 20 months ago; none of the insulin got into her. From here on out, Marc was awesome. He properly decided that he should give her a shot (and did the right computation of amount of insulin), because it is the most effective at times like this and quicker than changing her pump inset, which he did after he found her hiding (knowing what was coming) and gave her the shot.

In less than an hour, she was down to 562; 494 a half hour after that and 129 at 2:00. Poor thing could eat NO carbs during that time. Luckily, we had no plans, so she wasn't missing out on anything. The scary thing is that 1. she said she felt fine! How can that be?! and 2, as Marc said in his text to me while I was at salon: "Cannot believe how precarious her life is and will always be." Without insulin, she would bed dead in a matter of days. I'm thankful every day for that amazing invention!!!!

The day got better for K, and us. Our great t1d babysitter came to our house at 3:00 and understood the predicament we'd had earlier (it has happened to her before). They all had a fine time together as we went to a wedding that afternoon.

Anniversary

I HAD to write today - but I'll get to that in a second…  

The other night in the bathtub, K asked for easily the 15th time, "Will I always have diabetes?" I gave her my standard answer, "Yes honey, until there's a cure." The previous 14 times she's asked, her response to my answer has been a sigh, moan, or silence. But this time, on the eve of her fifth birthday, she asked, "What's a cure?" It was actually hard to explain without using the words "disease" or "healthy" because I view her as perfectly healthy - except, as I have said to her before, her stupid ass pancreas. I probably use different language with her…

Without a doubt, as I have mentioned other times on this blog, K handles her diabetes amazingly well!! Even yesterday at school, they served muffins as snack for her birthday. And since my boys were in the same class, they have started a tradition of letting the kids decorate their muffins with frosting. I don't think this is necessary, but I'm not going to rock the boat. She was dosed accordingly. Well, when her blood sugar sank to 55 mg/dl later in the morning, we learned that a teacher didn't let her have the frosting. So, from a health perspective, this wasn't good because we accounted for the frosting in the amount of insulin she was given, but I was actually more concerned about her socially. It was her freaking birthday - and all the other kids got frosting but her??!! 
But, she just rolled with it. She didn't make a fuss. When I picked her up after school, she said, "I didn't get frosting, but it's okay." Broke MY heart, but again, she's cool with it!! (as a side note, the school has been awesome with her and we've had very few issues - so I'm not trying to bad mouth. I'm using this as a recent example of her being mellow with her "differences".)

So the main reason I felt the need to write TODAY, is today marks the anniversary of one joyous and one sad event. On January 10, 2011, the day after K's fourth birthday, were beginning our pump training at CHLA. K began wearing her insulin pump before lunch and we've never looked back. It has made our life --HER life--so much easier. She NEVER got used to injections; it was a brutal nearly 6 months. It has not been easy for the last year, but so much easier!! Not only can we dose her without injecting her, we can dose her remotely (up to 10 yards).  Her control is better and she can eat more freely (not "freely", but more so J ). Best of all, she doesn't mind wearing it at all. At almost the same time I'm writing this, one year ago while we were in our class, I got a call from my sister that our step-dad, who had been on hospice care for about 10 days, had just passed (in Sacramento). It was a relief because he hadn't been conscious for a few days, so I was so thankful he didn't linger, but it was incredibly sad because he was gone - my first parent (I'm a lucky one with 3) to die - and he'd never live to see K be carefree with her insulin pump.  We were thankful too, that we got to see him right as his health took a wretched turn at Christmas time.  So, needless to say, January 10, will always hold a special place in my heart.