Tuesday, March 29, 2011

Pox vaccine, vomit, temps, ketones

Where have I been?   Well lets see.   I took Reubs for his 18month old chicken pox vaccine.

Ever since -

Ive been poking my son every hour-two hours day and night.   Squeezing out blood to check his blood glucose levels repeatedly.   Poking again to check ketones.   Hes gotten up a few mornings in a row just vomitting down the hallway - every few steps - a huge distressed cry and heave - then up comes the contents of his tummy, mostly liquids.     Its hard to know if this is in response to ketones, a tummy bug or the high temp?

Being so little he doesnt understand.   Hes moaning, burning hot.   Refusing foods.   First his blood sugar is high so we give extra insulin to bring him down and get rid of those pesky (and dangerous) ketones.   We manage to flush them, but he also hypos during a half hour nap :(    Then I struggle the rest of the night to keep him in range by giving him sugars he flat out doesnt want.  The ketones creep back.   Im being creative here and the endo thinks I could 'tempt' him with fruit juice.   Oh dear, hes just gotta see lemonade, fruit juice, chocolate, lollies, honey, condensed milk glucose syrup...and he freaks.   My best bet at the moment is lollipops, lucozade or hydralite.  Perhaps Danger Dad can swing by the supermarket and get some iceblocks?

I really struggle with the force I have to use to hold him down and 'do' the things I have to do to help him survive.   Hes strong.   Hes too big to hold in cradle to get the panadol in his mouth politely, with him flailing around hes decided panadol is evil and fights it everytime.    Not to mention this is emotionally exhausting.

Today he wakes up in range but totally refusing food and fluids.    I had to call the hospital at 3.30 this morning.     He hypo'd a few times last night so neither of us got any sleep.   I wondered if/when I should take him in.   

Hes such a good natured kid considering what we need to do to keep him alive. Healthy. Well.  He is loved.   Its hard to tell a small child 'Hey Im poking you with a needle because I love you.   Im jamming this sugar in your mouth to prevent you dying.'   Bet theres the reality.    This is a disease that isnt going away. 

Insulin is his medicine to process his sugar, and sugar is his medicine when he has too much insulin.    Sometimes keeping it away from him, sometimes forcing him to eat it.     I feel overwhelmingly sad  I think its a natural part of the grief process.

I dont want to be morbid but I read an article on Dead In Bed Syndrome (DIBS)  early on in this journey and it terrifies me.   This worse case scenario... frig.     I dont think I will ever sleep.

* My eldest son had parent teacher interviews last night.   He got a rip snorting report. It was all good and then some !  Im so proud !


  1. Love your little positive at the end - gotta keep it all in persepctive. That's great.

    Thanks for commenting on my 'dork of the week' post. My response to your "Why I blog" invitation was directly before that post (2 posts in one day - what's happening?)

  2. OMG really. Ive just gotten backonline with all the sickness in our house..blergh. Im excited to go read! Thanks.

  3. Oh, Jules, times like that are so trying! I hope he feels better soon!!!

    Congrats on the "rip snorting report"! (I love that phrase!!!) :-)

  4. When Elise was really sick around that age, we used a baby bottle to get juice into her. Something about the sucking really soothed her (plus she was half asleep as she did it). Worth a shot.

    Hope he feels better SOON!

  5. Joanne - he used to take juice, but we 'did' the apple juice to death. Now hes all about variety (argh toddlers!) isnt fun, is it?

  6. i have to qualify that - he likes ribena/tropical juice even sometimes lemonade, but as a hypo fix its never guaranteed whether its a 'juice' day or not!

  7. It is pretty rough sometimes Jules, I am sorry you guys are having a rough go right now and hope that he feels much better soon. These are the moments where I think all the difficulties of d are amplified and the stress is just beyond what we imagined. Those moments I have to remind myself over and over that it'll be okay, it'll be okay....
    take care :)

  8. Hope he feels better soon! I can't imagine how tough it is to have to force him to eat, take insulin, etc.

  9. Missed you Jules. So sorry Ruebs is not feeling well and that it has been a challenge - putting it lightly. One foot in front of the other...hopefully you will be able to look back on this in a couple of days as a bad memory and things will be looking up.

    DIBS scares the bejeezus outta me. AND...on the RIP SNORTING report - WOOT!!!!

  10. Hi Jules! Glad to see your blog! My hubby was diagnosed 31 years ago at 6months old. All of his docs say they have never seen someone diagnosed at that age and how rare it is. I see your little one was 8 months old. Wow. I look forward to reading your blog :)

  11. I hope he's feeling better by the time you get this comment. A sick D kiddo is a very serious matter. Praying for better days ahead.