Tuesday, December 22, 2009

Pancreas, we have a problem

It's official. My brain is fried. I can no longer think, reason, talk, remember my name, walk and chew gum at the same time (although that one was always a little dicey), or figure out the BG numbers.

I am flummoxed, stumped, puzzled, bewildered, confused, befuddled, discombobulated, and just plain at a loss.

And yes, this is yet another post where I bore you with the breakdown of Elise's numbers.

Last (Monday) night:
7:40 pm - 93. She gets her new lowered dose of 3N, and 17g (2 more than usual) of carbs
12:11 am - 74. She gets 8g of carbs
12:47 am - 102
1:16 am (crying) - 138
2:19 am (crying) - 125
3:54 am (crying) - 63. She gets 8g of carbs.
6:45 am - 91. We realized we never re-checked her after her last low. We're not too worried about this number as all her N should be out of her system by now.
7:54 am - 152

Today we had a pretty good day, numbers-wise. Then as then sun sets, Elise's pancreas starts at it again.

5:05 pm (dinner) - 234. High, but we give her a normal dose of 10DH and her usual 30g of carbs. We're eating a Chick-fil-a, so she plays in the play area for about 30 minutes afterwards.
7:42 pm - 196 - Still give her the lowered dose of 3N, and her usual 15g of carbs. We figure she's on the high side, so this should be okay.
9:15 pm (crying) - 44. What the FREAKIN' WHAT? How do you go down by 150 AFTER eating 15g of uncovered snack??? We give her 15g of carbs, plus almost a block of cheese (I may be exaggerating a wee bit). She also drank a sippy cup and a half of water. Ugh, can you say midnight diaper change (and no, I don't mean mine)?
9:32 pm - 69. Going up slowly. Gonna be a looooong night.

One thing I'm wondering is how much is exercise affecting her? I have noticed a pattern on nights where she's more active, she tends to go low.

But we also have these night time lows even when she's not active. Like last night for instance. Another thing I can't help but wonder is how long the DH stays in her body. I know they told us it peaks at about the 2 hour mark, then is pretty much gone by hour 4. But this does not seem to be the case with Elise, especially at night. It seems to peak a bit later and last longer. But how can that be?

Tomorrow we are going to be contacting the endo. Not the CDE, but the actual endo. Fred and I can't take much more of these night time issues. We have been testing her 6 - 8 times through the night almost every night. And it's not leaving much time to sleep. Even lowing her dose isn't having much effect. Last night when we lowered it, she had more lows that night than she did the night before on the higher dose.

If you didn't understand that last sentance, don't worry. Neither did I and I'm the one who typed it.

Bah, this post has already gotten too long and I need to go check Elise.


  1. Ok, I dint know much but here's my 2 cents. As far as exercise goes, I know it can affect blood sugar HOURS after. Avery has a delayed low after exercise where she will be fine but go low an hour, 2, 3 hours later. But, of course, not all the time. Sometimes, like last night, all of a sudden she was 51. Upper 200's to 51 in an hour- right after exercise. Just something to think about.

    I have a few questions... Is N novolog? I don't understand how what I'm assuming is 3 units of N was an uncovered snack? Do you always give her the same amount of carbs? Does she actually cooperate and eat it? I'm not asking to be critical- I hope it doesn't sound that way. I think it's so interesting how we are trained to do different things by our different hospitals. I know you are super stressed right now so sometime when you can think straight, I'd love to know! I think learning about different approaches to what I do helps me take the best care I can of my girl.
    Ok, this was a totally unhelpful comment. I'm so sorry, Joanne! I wish these wacky numbers would go away! I wish I had an answer for you! Sending you hugs - and more mini m&m's if you need them! That's the best I can do!

  2. This may be a totally unhelpful comment since I don't know much about NPH and I don't know how often you give it BUT maybe the time Elise gets it at night is messing with things and the time needs to be changed? We had a stretch with lantus where we had to split the dose for Addison so he got part in am and part in the pm to resolve some issues. Then it changed as it always does and went back to just one am dose. I can viscerally feel your lack of sleep and I am so sorry you are having such a hard time. I really hope you get to talk to the endo directly and that he or she can help you figure it out.

  3. I'm stressed for you! I've been there and done that over and over again and I know how you feel!

    ((HUGS!)) Praying that you find sanity again soon!

  4. I wish I had some answers for you . but sadly I dont and I really dont understand all of this . My son never did this but yeah exercise does effect everything .I hope the endo has some answers for you and I pray you get some rest and comfort soon .

  5. First... take a deep breath :)
    Okay,I'm going to throw some stuff out there JUST as food for thought.

    -We were told to give Justin 15 carbs for every 30 min of exercise. (granted he is older)

    -We were also told that when he is high that we should "encourage water"? (maybe that brings it down??)

    -We are also on a sliding scale with our "fast acting". We only give it if he is above 150.
    ** if Elise is only 93... maybe no N and a free snack would work?

    Just some thoughts.. I know I'm tired and I have not been up nearly as much as you. We will be thinking about you and hope all gets better soon :)

  6. I feel for you Joanne, when Cara was on NPH we had soooo many "what the heck" moments. I was so happy when we made the switch to Lantus. Don't get me wrong we still do have those moments but not nearly as much.

    I hope you all get some rest and you are doing a great job. Just keep your head above the water and just keep swimming!! :)

  7. Just wrapping my arms around you and giving you a big sista hug.

    Keep venting...that's what we're here for XOXOXOXO

  8. @ Hallie - N is NPH, it's an intermediate acting insulin with a peak after approx. 4 hours. She eats the same thing, same amount, at the same time every night and eats everything on her plate.

    @ Jen - NPH can't be split, and we talked to the doc about the timing of the dose and she said it really shouldn't matter.

    @ Lora - Because Elise is so young, her sliding sale doesn't start until 300. They want us to to keep her BG between 100 - 200. I think the offering water when they're high is to keep them hydrated in case of ketones.

    @ everybody - thanks for all your comments and the love. Elise woke up in the mid 300s, so I think we missed another low (we missed a check). Oh well, today's another day, right?

  9. Praying that the doctor will have something brilliant to tell you! That he will know what to do...that the questions will be answered!

    Love ya!

  10. Hopefully things will turn around soon Joanne. I would say trying to lower the basal, we've been pumping for so long now that's all I know right now. The body is such a complex thing and it sometimes reacts in such a non-logical way.

    Thanks for the comment on my blog, and yes please add the link on yours.


  11. Hoping things will improve, soon, for you guys! We have LOTS of sleepless nights here too.

    ANY amount of "extra" exercise (even if it does not seem like much) tends to DROP Zane about 6 hours later. Lots of fun in the middle of the night. :(

  12. Merry Christmas to you, your husband, and dear sweet Elise.


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