Tuesday, April 9, 2013

More on the fabulous "Honeymoon"

Well, I guessed right.  Last night was indeed a long night.

It began when we gave Eleanor tortellini for dinner. It's her favorite.  We had been giving her 3/4 of a cup, because that is 40 grams of carbohydrates, and is the range we were originally given for every meal when released from the hospital.  But it never filled her up.  She loves the stuff.  So, last night, there was about a cup and half left.  Since she was put on ratios, I knew she could have more, if she wanted it.  We were all eating leftovers for dinner.  In all the comings and goings for her rehearsals and performances, the fridge has filled up with bits and pieces of many meals.  It was a good time to scrape dinner together.  I weighed the remaining tortellini on my nifty new kitchen scale and showed it to her in a bowl so she could gauge the amount.  I asked her if she thought she'd eat it all, and she said, "yes." Then I cut up some strawberries.  Strawberries are one of Eleanor's favorite foods in all the world, so now she is looking at a plate of her mostest-favoritest meal!  Yay!

Eleanor outside the Campus Theater
before the Matinee on Sunday.
She is portraying Princess Ying Yaowalak.

I calculated the carbs and dosed her up.  Then… it took her an hour to eat it all. She wanted it. But she sure is a slow eater.  We had worried, even in the hospital that her slow eating is a potential problem, but it hasn't been.  Our concern was that if we dose her with insulin and then she eats too slowly, she could have a low because the insulin catches up to her before the food does.

After she ate she came to me and said, "That was toooooo much!" Her tummy was stuffed!  I told her, gently, not to do that again.  I explained, "If your tummy is full, we can always give you a little juice to cover the carbs, you don't have to stuff yourself! That's no fun and it doesn't feel good." She nodded, but not long after she came back to me and asked me to check her.  56!

I got her some juice and she slumped down on the kitchen floor, lows are very unpleasant to watch. - I can only imagine what they feel like.  Ugh.  She appears to just collapse.  So I carried her to the couch near the TV.  I know her lows take a while to get over, so I found The Sound of Music on iTunes and snapped it up right then and there to give us something to do.

There's a story there too.  It's always been one of my favorites.  Isn't it everyone's favorite? :-)  But earlier that day, a friend from the cast of The King and I had told me about summer auditions for a production of it.  She suggested that Eleanor would make an adorable Gretl and said I should take her to audition.  I totally agree! Eleanor would make such an adorable Gretl! oh my! (I'm not biased or anything, really!) Since Eleanor had never seen it, but set her tiny little jaw and became doggedly determined to audition the moment she heard the suggestion, I figured this was a perfect time to watch it.  It's helpful to distract her while she recovers from a low.  I figured the low was just because she'd eaten too slowly.
Playing in the creek last week in her
friend Keira's neighborhood.

But here's the weird thing.  She kept recovering and crashing again.  You can see how her sugar bobbed up and down like a boat in the water in my post below.  I couldn't figure out what was going on.  Michael and I discussed it, and the only direction we found, to point the blame, was a freshly opened vial of insulin.  I learned in the hospital, that a vial of insulin slowly loses it's potency over the month that you have it in use.  So, when you open a new vial, the insulin in it is stronger than the last dose you got from the old vial. Michael and I pondered that.

Hmmm…

We also discussed that she'd had a big 'ole dose of it, to cover the wad'o-carbs in all that tortellini (strawberries have a few, but they're actually pretty low, as fruit goes)

So we sat on the couch watching The Sound of Music, and watched her blood glucose rolller coaster, see-saw and do The Hokey-Pokey up and down all evening.  When we got the the end of "So Long Farewell," it was 9:30
she'd had a *well balanced bedtime snack,
and she had just registered a BG of 166.
We gave her her usual bedtime Lantus.
No problem.
Let's put her to bed.

So, we brushed the teeth, filled up the water bottles, Reid put on his head gear, Kenneth got his retainer, everyone found a book to take to bed, I apologized to her again for leaving her iPad at The Campus Theater (oops!)  I think I finally turned the boys' lights out at 10:20, but I took a stack of books off their shelves to offer to her, because it wasn't only her iPad I left behind at the Campus Theater, I left her new book from the Easter Bunny there too.  (oops! again. <sigh>)

So…I climbed up her loft ladder to give her these four books: The Sarah Plain and Tall Collection, Charlotte's Web, Half Magic & Because of Winn Dixie.  When I got there, she said, "I don't feel good."

"Low?" I asked.
"No, just 'not good'" she sighed.

So, down the ladder we went, back to the couch.  I was sitting there trying to get her food and BG log caught up from the show opening weekend before I went to bed. It's incredibly challenging to write down everything she eats, and how many grams of carbs are in each item when you are frantically dodging around back stage with juice box trying to stay out of the way, and out of sight - and sewing elastic on 25 hats for the other kids in the cast too.  Talk about doing the Hokey Pokey! (remind me to get an app for that!)  Finally, after a few minutes, at nearly 11:00 pm, she asked me to check her again.  58!! What the devil? 58? Why!?

So I threw up my hands, and called the clinic the answering service, who paged and awakened The Good Dr. Smith, and he said it was probably her Honeymoon kicking in. Oh boy! Where do I sign up for THIS kind of Honeymoon? Who the heck though up that name?  The only thing I can see that it has in common with a honeymoon, is perhaps the wild sleepless nights. I can hardly wait to pack my bags! Be sure to pack the Glucagon!  Wheeeeee!

Dr. Smith sleepily told us to give her a substantial *well balanced snack and check her every hour all night.  We did, but by 3:50, I checked and her BG was 493.  Freak out time!  I called good ole Dr. Smith a second time.  The first thing he suggested was to check it again, to see if it was really that high.  (note to self: do a second check next time before calling.) On the second check it was only 328, but we hadn't been given any instructions for what to do if she is high at a time other than a meal. They had  only taught us that if it's over 250, to check ketones, and push fluids.  He mumbled to himself, did some math and told us to give her 1 unit of Humalog.  We hung up and got the insulin ready.  It was all kind of horrible with her crying and not fully awake.  I'm so grateful Michael was here, because I  don't know if I could have done it by myself.  I hugged her tight to keep her still while he did the injection.  She's very cooperative about injections unless she's very tired.

Afterwards, I tucked her back in between us and held her in my arms singing "Hush Little Baby" until she finally stopped crying and fell asleep.  The last couple of checks, in the wee hours and this morning have been in her target range.  If it had to happen, at least it wasn't during a performance.  If it had done this on Friday or Saturday night, we would have been faced with a girl made of jello in the middle of a show.  It's always good to find the upside, but that sure don't make it no Honeymoon!


*Well Balanced means a good mixture of fat and protein, along with 15 grams of carbohydrates, it's supposed to help carry her through the night without going too low. Eleanor likes peanut butter trail mix balls, they make a good bedtime snack.


2 comments:

  1. From experience, we NEVER weigh pasta. We measure by volume since the weight may vary depending on how much water it retains after cooking. We had a very similar experience with spaghetti, shortly after diagnosis. Plus I tend to decrease her dose by about 10% to make up for the extra time pasta seems to take to digest. For us that means a correction dose a few hours later, but I would much rather have that than the monster low that we had.

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    Replies
    1. Thanks Crystal. I did actually consider that before I measured. I both measured AND weighed the pasta, to try to come up with what I expected was the actual amount she was eating. Pasta is confusing anyway, because the nutrition label doesn't always specify if the amounts given are cooked or uncooked. I knew going in it would be tricky, but I did my best to guestimate. I'm going to assume it was a combination of factors. 1. the pasta. 2. The Honeymoon and 3. The fresh insulin. Anyway, she seems okay, and is sleeping now. The last 3 BG checks have been in range.

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