Isn't it Ironic

Monday, November 15, 2010

This is not the post I had planned for today.  

I was going to write about everything we did to celebrate WDD.  I was going to tell you all about wearing our blue, WDD shirts, attending the Type 1 Talk event that I was a part of, going to see the city monuments that were lit up blue....

I was sure I would have an inspiring post full of warm fuzzies about a wonderful day - a day spent with others in the Diabetes Community.

Our day did not go as planned.

This is how we spent World Diabetes Day.



I spent World Diabetes Day at Children's Hospital - holding my four year old child as she retched and cried because this hateful disease was wreaking havoc in her tiny body.

How ironic.  Don't you think?


As you may know, we've been having trouble with pump sites.  LOTS of trouble with pump sites.  I wrote about it in the post Reality Bites.  But that was only the tip of the iceberg.  It got worse.  It happened again.  3 days later.  Next site change - same thing.  We changed the site.... I don't know.... 3 times before we got one that worked?  I called the hospital that night.  Ketones were up.  But the site was working and bg and ketones were dropping... so we avoided the ER.

And then today....   We did another site change last night.  We moved Sweetpea's Dexie sensor to her arm to free up more tush room.  She was scared but so excited when she woke up Saturday to find it on her arm!  So Saturday night we moved the pump site to the other cheek.  We used the new ones that Animas had sent us in the mail.  The automatic straight in sets.

J was on duty last night.  He corrected her once.  And she seemed to be coming down.  She was in the 280's.  Not unheard of if she's been running high.  We tend not to correct numbers under 300 because she crashes.  Even with an ISF of 500... she still crashes overnight.  

I got up with Sweetpea this morning.  Everything seemed fine. She was still in the upper 200's.  I was little worried... so we lazed around a little before getting breakfast.  I wanted to see if she would come down at all before I let her eat.  


Good thing.  We were laying on the couch watching Phineas and Ferb.  She seemed totally fine.  Then she threw up.


CRAP ON A STICK!


So I start running around like a chicken getting towels and a bucket and the meter and ketone tester... all the while screaming for J... it was his morning to sleep in and he'd gone back to bed.  

Poor Sweetpea.  THe first thing she said was, "I don't wanna go to the hospital, Mommy.  Do I have to go to the hospital?"


Ketone check.... 3.2

Oh HELL.  This is NOT GOOD.

Clean the couch, comfort the kid, call the hospital.

Pull the site.  Kinked.  Give a shot.

Wait.  wait.  wait.

Talk to the on call doc and he says - "She threw up?  Pack your stuff and bring her in.  To base."

We have a satellite Children's about 30 minutes from us.  Base is an hour away.  

It's 10 am.

Sweetpea is crying.  She's scared.  J and I are running around throwing on clothes.  So much for those WDD shirts.  

We pack up and head out.  

On the way, we call our parents.  I call our JDRF Executive Director to tell her that I most likely will miss Type 1 Talk.  

Sweetpea throws up in the car.  Good thing we had that bucket.

At the ER, they are ready for us.  We are in a room shortly.  Sweetpea looks horrible.  Her color is gray and her lips are pale.  She's moaning.  Her belly hurts.  

She throws up again.  Now I'm splattered with puke.

The nurses hook her up to an IV line.  This is not quite as traumatic as the previous ones we have done.  I'm in the bed with her laying in my lap.  J is holding her feet.  The nurses were great.  Sweetpea was able to breathe and hold pretty still.  

Soon she was hooked up to the IV machine - which was giving her a bolus of saline.  AND some Zofran for the nausea.  She was also hooked to the blood pressure monitor, the oxygen monitor, and who knows what else.  

Labs came back... No DKA.  Thank God.

We were warned that the saline might drop her bg a bit and the Zofran should help her feel better.


It did.


Before long she was 69.


Great!  Time to check and see if she can tolerate juice!  She downed a box of apple juice.  15c.  Probably too much - but we weren't sure what the saline would do and the nurse said that the on call endocrine doc said it was up to us to cover it.  Covering it means a shot.  A tiny shot.  We decided to wait it out.


Her blood sugar starts to sky rocket again.  Ketones go up.  Damn juice.


Sweetpea has perked up a little by now.  She's done with the saline and ready to eat.  She eats some graham crackers and peanut butter.  We cover those carbs and correct.  Another shot.


Even though she's still a little high and she still has 1.0 ketones, they release us.  We said we thought we could handle it.  Are we crazy?


We went upstairs to endocrinology, though, for some advice about sites.  The nurse was only able to "talk" to us, though, because we had been discharged.  She agreed that a site in the tummy was not a good idea.  ZERO FAT.  We agreed that we'd try the old angled inserters and we'd try it on her other arm when we got home.  Cream on.... we left the hospital.  


It was 4:15. 


We got home and inserted the site.  Sweetpea was really nervous but held still and did well.  She is so very brave!

We gave another correction.  And we waited.


Then we went to dinner with Gaga and Mimi.  We were supposed to meet them for breakfast.  Sweetpea talked about it all day.  And we were STARVING.  All she'd eaten was her hospital snack.  J and I had eaten nothing.

At dinner... bg was 194 and ketones were 0.2.  


What do I say about this day?  This World Diabetes Day?  

How ironic we spent it in the ER.  At least the nurses noticed our blue nails and asked about them....



Here I sit.  I am exhausted.  I feel like I was used to mop up the floor.  I'm numb.

So many times today, I just wanted to break down.  

I was scared.  It's been a long while since I was scared.  But I've been scared this past week.  I don't like seeing what D does to her.  It's awful.  I hate seeing her weak, sick, and scared.  But I couldn't break down, could I?  I couldn't let her see that I was scared.  I had to hold it together. 


And now?  Now... Well.... Now I'm too tired to go there.  I have no energy left to go to that place.  That place of what ifs and guilt and pain.  


Maybe that's not such a bad thing.


Sweetpea said that "this day was dumb".  I totally agree.  I told her that we'd had a really rough day.  She agreed.  Well.... actually she said, "Yeah.  Well... not you or Daddy.  Just me."  I might argue that... but she DOES have a point.

I feel like I've gone to battle.  And I have.  With this opponent that is strong and silent and sly.  But Sweetpea is the one who's really fought this battle.  It was her body taking everything that D can throw at her.  And her spirit that remains strong.  

She is my hero.  A hero in a tiny body topped with big blue eyes and curly blond hair.  A hero that looks more like an angel.  She is so brave.  She is so strong.  She is a fighter.  


We missed the lighting of the monuments.  We missed Type 1 Talk.  We missed coming together as a community.  We missed wearing our special blue shirts. 


But we lived the example of WHY we need a CURE.  And why we need it NOW.






24 comments:

  1. I'm so sorry to hear about your day. Our day was bad too, but not quite as bad as yours. We had a stomach bug, throwing up, ketones. I hope your daughter's on the mend, and that you can figure out the site issues. Hang in there - you're doing great. I know the feeling of wanting to fall apart but not even having the engergy to do it. Good Luck! I'll be praying for you!

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  2. Oh no....(((hugs))) I am so sorry you guys had such a rough day. That just breaks my heart. What a brave girl!

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  3. What a day Hallie. I'm so sorry how your day turned out. I'm glad you are home, and pray that sweet pea continues to feel better!

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  4. Oh....sweet child...I'm so sorry. So, so sorry this horrible beast ruined your day.

    You did a great job, Hallie. A great job in the midst of madness.

    I will pray for these highs to hit the high road STAT.

    Much love to you...xoxoxoxo....

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  5. Hallie, I'm in tears here, it's that photo of Sweetpea on the bed with all those tubes. I don't know what to say. Thank you for sharing your pain - know that we feel it with you. You are one tough, strong lady. And she is a tough little trooper. I have been praying for you all and am so glad you are home and Sweetpea is feeling better. You're doing an amazing job. Hang in there - it will get better, I am sure! Stay strong - she gets her strength from you. God bless you all. xoxo

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  6. Hey there, first off..I am soo sorry for all that your daughter and the rest of your family have been going through. I think that all the ups and downs of diabetes and how it effects our children is absolutely horrible. I always hope that when Isaac is high that it's just from food, always hope for no ketones, always hope that if the site is changed that it'll be fixed quickly.
    I was mentioning to my mother, whom is well practiced nurse, that his body is already developing scar tissue rapidly due to having a small body and very few locations for where to put sites. We've actually had to start rotating more frequently due to insulin absorption problems in his hiney. Anyhow, she asked if we could have therapeutic ultrasound therapy done. HIs endo is now discussing this with her colleagues as a form of treatment for him throughout the rest of his "pumping" life...she says there is little research on how it will help with insulin absorption, but it can't hurt.
    Just another idea if the trouble is scar tissue.
    Again, I'm sorry that this is happening. I think if it were me there would be times I'd want to just throw in the towel, but with it being my child I just can't do that and I know you feel the same way. You're an amazing mother and I appreciate your sharing these personal moments. Take care.

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  7. I am so glad shes ok and youre all home. But boy what a day you had! Such a brave lil girl is right god bless that spirit of hers. And youre strength as well!

    We have issues with tummie sites due to so lil fat if we use his tummy we change every 48hrs but I still trust tushi and arm way more. Even thighs.

    Hope that site issues get resolved and thiings stay on the up and up!!

    (((((BIG HUGS)))))))

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  8. It was a very dumb day, but how brave your little sweatpea is! I hope she continues to feel better and these highs get out of the picture soon!

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  9. I'm so sorry you all had to spend your time fighting this beast today. Your Sweatpea shows amazing strength, and so does her mom. :)

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  10. I'm glad she is home and you got through it. Maybe this is the WDD promo we need to run on everyone's site for about a week, instead of a blue circle. We need personal connections as to WHY we need a cure - why SweetPea needs one NOW. You hung in there. She did to. Time to rally for another day. Sending you love and hugs.

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  11. Hallie..I am in tears. I am so sorry you guys had such a DUMB day. That feeling of being scared, seeing your child SO sick due to D - it is a horrible , horrible feeling. I hope the docs figure things out and that you all get a much needed break.

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  12. BIG HUGS!! Hoping Sweetpea is feeling better.

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  13. We have been there so many times over the years. All I can say is I'm so sorry. It sucks so much. We need a cure.

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  14. I am so sorry! That is so scary. It's always humbling to realize just how quickly diabetes can turn into a medical emergency. Hope you never have to have another day like that! :(

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  15. That pic of you and Sweetpea made tears spring to my eyes. I am so sorry that you guys spent WDD that way Hallie. "D" doesn't play by the rules, especially when dealing with young children. Things can go bad rapidly.

    (((HUGS)))

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  16. Very sorry any day had to be spent like this.... traumatic. Glad she is feeling better now and glad you were on top of things and got her to the ER on time. How is the endo helping you in all this... sounds like you are on your own. Ask for options. Maybe add Lantus or Levimir shot into the mix for half or less than half of the basal so you can still manage via pump but avoid ketones. What about the steel sets, like Rapid D? I have been told they are not as uncomfortable as I had thought (but thinking tummy location). Endo has to troubleshoot, help you and come up with something. This is dangerous and your team really needs to step up. You are doing all you can do. You need more options.

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  17. So pretty much everything is making me cry right now, Hallie... but your post reall got me. I am so sorry you, J and Sweetpea had to go through all of that... (((HUGS and LOVE)))

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  18. Crap on a stick... I would have been a puddle of goo by the end of all of that. You sure are one STRONG D-Momma! Give Sweetpea a hug from Elise and I. We hope she's feeling better soon!

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  19. i have been in the exact same place. two years ago i had a bad stomach flu. the flu made my diabetes uncontrollable. i went to the hospital with a blood sugar of over 800. i was diagnosed with DKA. i was also hooked up to many IV's and machines. i was scared for my life and only 14 years old. i had to speed the weekend in the hospital. the worst part of all of this was that i missed my own diabetes walk. this experience was disappointing, stupid, and ironic.
    -NaturallySweet

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  20. DF! I'm so sorry you've had to go through all this!!!

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  21. Stupid D and Stupid Diabetes! I am bawling! You are so right she is a beautiful little hero. Please give SweetPea a big hug from me and Super Nate. We love you guys and sincerely hope things are going SO much better

    Stupid D

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  22. Wow this is a great resource.. I’m enjoying it.. good article

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