THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Sunday, September 19, 2010

An Epic Low

Hindsight is 20/20.
INVISIBLE ILLNESS WEEK 2010







Lows happen.

If you rely on insulin for survival, low blood sugars are part of the journey.

Sugar has a history of terrible horrible no good very BAD lows.  She would pass out and hit her head pretty regularly in her pre-pump days.  The days when she was too little to tell me what was happening....too little to even understand what she was feeling, for that matter....the days of quarter units that I couldn't ever draw up accurately in a half unit syringe....the days when I had to settle for giving more insulin than necessary because my brain couldn't figure out the most precise dose, and I wouldn't have been able to draw it up in a syringe even if I could have.  She was just a baby -- only 2 -- when she started to deal with this disastrous consequence of being a child with Type 1 Diabetes.   

Until I started to connect on line a few years ago, I thought these lows were normal.  But they weren't.  They were "bad lows", and, while all people with Type 1 Diabetes risk dealing with them, not everyone has them.   Off the top of my head, I remember this post from Lee Ann over at The Butter Compartment.  Recently Michael's wife had to call 911 for a low blood sugar at The Diabetic's Corner BoothHere Kerri describes the experience of wanting so badly to pick up her crying baby, but having to deal with a lingering blood sugar in the 40's first...and HERE you can watch her dealing with the brain fog that accompanies low blood sugar.  A few years ago, Shamae posted about Sydney's seizure.

As a mother, it's hard for me to put into words the emotions of watching your precious child succumb to these "bad" low blood sugars.  I grasp for adjectives to describe the feelings of desperation, fear, and helplessness....but there just aren't words to adequately explain what it's like.  In the back of your mind, you know that the end result could be death.  Yes.  She could DIE.  What if nothing works?  What if the juice doesn't kick in fast enough?  What if, what if, what if....the term "PANIC" seems appropriate, but it's still a far cry from accurately describing the actual experience of going through it.

Last night we faced this beast again.


There were a few things that contributed to this drama....
  1. She woke up at 55 -- already beginning the day with a liver low on it's glucose reserves.
  2. She swam for a bit in the early part of the day, and dropped to 55 again with the activity.
  3. After the second low, she spent the rest of the day in the 300's, despite multiple corrections.
  4. She didn't eat all of her dinner.
  5. She ran around playing hard on the lawn at church following service last night.
Keeping all of that in mind, allow me to set the scene for you....

    One of our family's favorite activities is to hang around for lunch or dinner
    (depending on which service we attend) after church.
    Inevitably we run into friends, and it's always nice to catch up!
    Our church campus has an outdoor grill and a cafe,
    along with big lush lawns and a bunch of play equipment scattered about for the kids.


    Here in the desert, we've just started to have tolerable temperatures in the evenings.
    The kids have been patiently waiting to get outdoors and run around
    after months of being stuck inside.
    As previously mentioned, Sugar spent a large part of her day in the 300's.
    The opportunity for free range exercise was welcome,
    especially since it seemed like nothing else was working
    to bring  down those stubborn highs.

    Here's how things looked when we got home last night.
     She had a banana and I bolused her for it.
    She didn't get a full dose, because the pump adjusted for both the
    insulin on board still circulating from dinner,
    plus a blood sugar that was under her evening target of 150.
     Of the full unit she would have gotten, the pump only advised a dose of 0.25 units.

    And then....20 minutes later....
    24 fast acting carbs and 8 minutes later, she was significantly more symptomatic.
    Moaning.
    Whining.
    Crying.
    Restless.
    Heavy eyes.
    Head bobbing.
    Refusing to drink.
    Confrontational.
    Poor color.
    Unable to put words together to describe what she was feeling.
    Apparently the juice box and fruit roll up from earlier weren't working.
    I poured out roughly 4 oz orange juice and stirred in some sugar.
    (This is what I learned to do in nursing school!)
    She drank about half of it and then refused to drink more.
    She did take some sugar straight from the spoon.
    Then refused more of that.
    I tried to get her to suck on a 15c lollipop....but she didn't want that either.

    After a few minutes, it seemed that she was getting worse.
    We just weren't making any progress.

    We were just about 15 minutes into this low, and she had taken plenty of fast acting carbs.
    Things should have been turning around.
    But they weren't.
     It was at this point that I decided to stop caring what the meter said.
    Those dang things are only required to be 20% within an actual reading anyway.
    I needed to step back and treat MY DAUGHTER.

    SHE WAS WORSE.

    I don't care that the number was 40 instead of 30.
    45 isn't an acceptable number under any circumstance.

    Her symptoms dictated that the situation was worsening right before my eyes.

    I remember learning in the beginning that Glucagon should only be reserved for
    instances of seizures or unresponsiveness.

    Well, I wasn't willing to wait for that.

    I believed that, if something drastic was not done,
     SHE COULD DIE.

    In 5 years, I've never done it.  
    Looking back now, I believe there were times that I probably should have.

    Hindsight is 20/20.

     I didn't have anymore time to waste.
    The fast acting carbs we had given weren't working and time was of the essence.
    So I gave her 7 units of Glucagon as a rescue measure.
    In my mind, she was 7 years old, so I chose to give 1 unit per year of age.
    Don't ask me how my brain came to that conclusion.
    It's what my God given maternal instinct felt was the right thing to do.

    Had she been unconscious or seizing, 
    I would have given half the vial in her thigh just as we were instructed to do
    way back when all of this diabetes stuff was brand new.

    I opened the red box and had to remind myself what to do next.
    Inject the fluid into the powder.
    Swirl to mix -- DO NOT shake.
    I grabbed an insulin syringe, and my heart was racing as I pulled up the dose.
    With that, I injected it into her arm.

    I continued to rub honey into her gums and cheeks.
    I was waiting and praying for any sign that things were turning around.
     Just a minute or two after that reading, she began to complain of nausea.
    Hearing this was music to my ears, because I knew the Glucagon was working.  
    (Nausea and vomiting are common side effects of Glucagon).

    I took a deep breath and allowed the tears to come.
    I was one very scared D Mama.

    That red box goes with us everywhere.
    It's always stuffed at the bottom of her bag.
    Last night I was reminded of why it's a vital part of our life with Type 1 Diabetes.

    To a bystander who may not know better,
    Sugar probably appears like any other happy go-lucky child.
    One would never guess that we raged this battle for her life last night.
    Just because you cannot see it, doesn't mean it isn't there.
    Constantly.

    **One thing I'd like to edit this post to include is the suggestion to keep an insulin syringe taped to the red box.  When Sugar was first dx, the CDE gave us that advice.  You see, when you open the box, all you have is the big needle that comes with it.  Also, you'll see that I was measuring Sugar's dose according to UNITS (u).  
    The syringe in the box uses MILLILITERS (ml).  
    There's a big difference between 7 UNITS and 7 MILLILITERS.**
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    31 comments:

    1. You must have filed that bit of important info somewhere, because one unit per year of age is the exact right thing to do! A hard night, but you did what every parent should do when in this situation, follow your gut!

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    2. Oh, Wendy! Big hugs to you and Sugar! It's so scary when you have stubborn lows like that! Great job getting it treated and keeping her safe!

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    3. I think my heart stopped a few times while reading your post. Thank you for sharing this, because while we haven't faced any crazy lows with Adam yet, he's been in the 50's once today and was low yesterday...it is making me nervous. He doesn't seem to show when he's that low. Now, I have a bit more confidence in what to do since reading this. ((hugs))

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    4. Oh, Wendy I am so sorry that you and Sugar had to experience that. Thank God, really that you had the presence of mind to use the Glucagon. Your post made me cry, because I know how miserable those "bad" lows are and how sick Glucagon makes you, I can only imagine what it is like for a parent to have to use it, to rescue their child's life. Your post makes me feel like I need to call my mom and grandma and thank them for being my rescuers.

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    5. What a heart-pounding, nerve-wracking, SCARY experience!!! I'm all teary-eyed after reading about it. You handled it so well! Bravo!!!!

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    6. Wendy, I hope you and Sugar and the family are doing ok today. That is one of the couple of moments I fear. I haven't had to use it yet...but am keenly aware of it's presence in case of need.

      You did a fabulous job. Pat yourself on the back and I hope you can have a relaxing night tonight without lows.

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    7. Oh Wendy my heart goes out to you! Quite scary. You handled it well. These lows sure are something, aren't they. Constant reminders. Love and hugs to you and Sugar.

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    8. Oh my gosh Wendy! I am so impressed with you how handled everything.
      We have yet to experience a bad low and I can only hope my brain has the reserves to remember to listen my instincts as you did and know what to do. Sugar is one lucky little girl to have you. Hope you are all having a restful night tonight! Big hugs..

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    9. Whew - that was one suspenseful story.

      I'm so sorry you all had to go through that and so happy everything ended up okay. Kudos to you for keeping your cool.

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    10. Good Hell Woman - My heart is racing and tears are flowing! I love you and Sweet Sugar!! I'm so glad everyone is ok.

      You are an amazing D Mama!!

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    11. wow, what a night! I am glad everything turned out okay. Our CGM saved the day last night. I had my alarm set for 1:00am and Justin came in my room a little after 11pm at 61. His CGM alarmed and woke him up.
      I really don't get it. For the last few weeks I have corrected him EVERY NIGHT... then we have an entire night worth of lowes.

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    12. It never ceases to amaze me what you all go through on a daily basis and how totally unpredictable it all is. Well done for going with your gut. So glad all is well again. x

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    13. Scary. Glad you thought of glucagon. I carry one everywhere but don't know if I would have thought of it in this situation. Good call. Will remember in case. Hope all settles down.
      Think it is so important that us D mommies follow our guts when our kids act low or don't seem to be getting better despite what the meter may tell us. Have had Bryce test low and show no signs & feel fine and also test in the 80s and feel low (to fall lower after a snack)

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    14. I'm with Denise, in that I don't think I would have thought to use Glucagon if she was still conscious. But thank goodness you did! You did exactly the right thing! My CDE once had me give Grace glucagon when she was on NPH but started throwing up mid morning. She couldn't keep food in her and her insulin was set to peak shortly. After watching her numbers fall into the 50s, I was told to give her 7 units of glucagon (she was 7 years old). We had to repeat once, but that offset the NPH. So your units:age ratio was spot on.

      How scary for you and for Sugar. Does she remember the incident? Can she articulate how she felt? My heart goes out to her for having to go through that. She's just a child! That's what people don't see or understand about diabetes. Just how scary it is for a child to live with this. Good job taking care of her. She's lucky to have you.

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    15. Oh my gosh Wendy! My heart is racing after reading this. That is so scary. Thank you for sharing this vulnerable and scary moment for you. I have not had to use the "red box" yet, and hope that I never do. But one thing is certain, if I ever should have to, I KNOW that this post will pop into my head and I will be able to draw strength from that. Hope that Sugar is doing better today.

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    16. Heart palpitations, just reading it. Im so sorry. ((HUGS)) for you both! Tears, indeed.

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    17. Ditto what Misty said. So sorry you had to go through that. So, so happy all is ok today.

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    18. Seems our babes are cut from the same fabric of low after low after low. I am deeply sorry that she had to go through this but am every grateful for such a strong mama that could decide how and when to administer the glucagon. We've had to utilize it once in similar circumstances, but still...like you said those young children have trouble voicing their lows/highs but you can just tell. I think post like these are essential for newbies to learn that glucagon isn't scary but truly a life saver in many many instances to keep scary from occurring.
      Take care.

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    19. I want to leave a comment so you know I read this and admire your strength and quick on your feet D-mom skills. Your post left me speechless though. Love and ((HUGS))!

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    20. Wendy, as I am fighting our 2nd night of unexplained lows I cant thank you for the knowlege you have shared. I believe God helped me to find your post tonight so I would understand a possiable tool for me to use one day. YOU are a brave and amazing woman and I am so proud of you!! THANK YOU for sharing your post!! Big hugs to you

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    21. OMG I am so glad everything ended ok! Smart momma using the Glucagon we were in this same situation twice in last month and we kept feeding and feeding and finally disconnected pump. I never would have thought to use the glucagon like that.

      Thank you for sharing...BIG HUGS!!!!

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    22. Thank you SO much for sharing!! I just found your blog today via the blog The Princess and the Pump. My daughter is only 4 and cannot feel lows yet (dx 13 months ago today). She has only had what I would describe as one "bad low" like you described; not horrible in the numbers but definitely sympomatically bad. She was with my son and Mom who was driving, she immediately pulled over at a fire station she just happened to be driving by, and tested/treated her. Fortunately she came right up but I will definitely be sharing your blog with her. Administering glucagon has always scared me but your post helps me see how vital it really is and I shouldn't be afraid to use it. THANK YOU!!

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    23. HOLY CRAP, my heart was pounding through that whole post!! I really don't know what to say at this very second. WOW tooo scary!! very scary, really that is just to close of a call. Poor sugar and poor you to have to experience this! but wonderful job and thank you so much for sharing with us!!

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    24. Teary eyed just reading that. Wow, you handled it really well. I can't imagine myself in that position. I have never thought Lovebug was bad enough to give her the glucagon, I hope that I don't ever feel that way. I'm so sorry you had to experience that. At least if I ever do have to use it, maybe I'll be a little more confident after reading your post

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    25. OMG, dear Jesus! Always follow your gut, it is your God given 6th sense as a mother.

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    26. Oh My... I cannot imagine what you are living with on, not only a daily basis, but hour to hour, it seems. Bless you heart and bless Sugar as well.. xoxo

      Cindy

      Found you in the penthouse with Mom's Treehouse.
      Please stop by and visit me sometime.. http://cindyseesit.blogspot.com/

      I'm following you now so I can keep up with you.
      hugs

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    27. oops... used my other alias :) http://cindyseesit.blogspot.com/

      Be blessed

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    28. Scary, scary, scary!!! You had me so nervous reading this post...glucagon is my worst nightmare but it is a lifesaving tool I take with me EVERYWHERE!!!

      I am so glad that she is ok and you followed your instinct, you had me in tears but you have also given us fellow d-mamas a tough reminder that these lows can be deadly and never underestimate the power of a moms instinct!

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    29. My dear friend, my daughter's dear friend, so proud of your courage to take that next step and find your calmness and strength. I felt as if I was right there with you, how the tears came... as baby #1's number took those first few steps in the right direction:)

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    30. I am so sorry that you had to go through that. Shannon and I are dealing with lows as well, but no scares like you had to deal with. I will tell you that your post made me go read the directions in the red box, just so I would have a reminder. So thank you for that!

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    31. It must have been extremely scary, and I am sure not everyone would have remained as calm and rational as you were.


      I would like to thank you for participating in The Wednesday Window. This week’s Wednesday Window is now live, and I hope you will come link up your best blog post.

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    While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.