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 !