Thursday, May 16, 2013

And then you shift your priorities.

This blog has been pretty quiet for the past month. Sometimes I get busy and I post a lot, and then sometimes I get busy and I don't post at all. Most of the time it's because life has gotten hectic with small things - rarely with One Big Thing.

But this time it was One Big Thing. My daughter Avery, whose real name I'm using here for the first time, got very sick on the last weekend of April, with what I thought was a stomach bug. On the third night, when the vomiting started again and she had been hyperventilating for several hours and the bad feeling I had just wouldn't go away, I took her to emergency.

Within about 3 minutes the triage nurse had it figured out. At first he thought she was hyperventilating from anxiety after all the vomiting. You could see, too, that she was badly dehydrated. She breathed into a paper bag for about 45 seconds while he was asking me her date of birth and so on, and suddenly she took the bag off her face and gasped, "I might throw up." He smelled her breath and reached for a glucometer.

Do mothers go into denial sometimes? Absolutely we do. I had noticed the frequent urination over the past couple of weeks, but I had put all my anxiety into the kidney disease fact I had decided to ask her doctor to order a 24-hour urine collection.

But as soon as I saw what he had in his hand, I knew what the bad feeling was. Once or twice over the past month I thought "She's been up to pee twice tonight. Diabetes? No, don't be silly. Don't overreact."

Her blood sugar was 23.5.

It's a surreal feeling to see an entire emergency room unit scramble into action at 3 AM, because your daughter has a stomach bug. It's a surreal feeling to sit next to your 9 year old - whose eyelids are barely visible, her eyes are so sunken - biting your tongue because all you can think to say to the doctor is "You must be mistaken." It's a surreal feeling to watch them, when they can finally get a line in to her shrunken and dehydrated threads of veins, put insulin into her IV.

And then to watch the colour and the life come back into your daughter, and to know it's not just the saline, the phosphorus and the potassium, but because she is getting dextrose and insulin.

Insulin. "But - but -" I think to myself stupidly, "Insulin is only for diabetics."

It can't be. It can't be. She's perfectly well. She has always wasted away when she has a virus - all her life whenever she gets a cold she shrinks down to a wisp, and then within a few days she plumps back up. You must be wrong. There's some other explanation, I know it.

Can't we talk about this?

I want what's behind door number two.

But what we got was Type 1 Diabetes. And what nearly killed Avery that night was diabetic ketoacidosis. She had every one of the symptoms on that linked page, except for coma and, thankfully, some of the symptoms listed under 'cerebral edema'.

We spent five days in hospital while they slowly brought her blood sugar down and her electrolytes up. I only realized how close she had been to fatal complications when the doctors and specialists who visited her every day would mention small things: things like "I haven't seen a child that sick from diabetes for a very long time." (That was from the pediatrician - himself a Type 1 diabetic.) "Avery, today is the sickest you will ever be in your life, I promise. You will never be this sick again."

And "She was very sick," said one nurse to another, then the diabetes nurse educator added to both of them, "She was incredibly sick."

I can't even describe how much better she looks in this photo. 
I wish I had taken one 12 hours earlier - you wouldn't think it was the same child.

We have been home now for 12 days. Our whole life has changed. From a household that would lie reading books in bed until 10.30 in the morning, shuffle into the kitchen and throw a few pieces of bread into the toaster, we have become a family who does sugar checks every four hours at minimum, and schedules (unbelievably balanced) meals for 9:00, 1:00, 6:00 and 9:00. Nothing gets in the way of mealtimes anymore - because I can't manage it all, in my own mind, unless there is some predictability built into the system. I have to know exactly what is going in to her body, and administer insulin within a certain timeframe around her meals.

My crappy little entry-level Samsung Galaxy smart-phone has become my bestest, best buddy. I have alarms set for 2 AM, 5 AM, and 8 AM. I have an app that links to a website where I log every single thing Avery eats, with a carb count for all of it, as well as the result of every finger-stick blood sugar test she does (we're averaging about 8 or 9 a day), and every injection she gets of both kinds of insulin. I had to get a text plan so that I could contact the pediatrician four times a day with her pre-meal blood sugar numbers, and he could text me back with the dosage.

Will we be okay? Yes. We will be okay.

Will this settle down so that I don't need to keep such obsessive records of her food? Yes. I'll get used to it.

Will I eventually know the insulin dosage myself, so that I don't need to text the pediatrician? Yes. In fact they're giving me "the math" tomorrow, and then I'll be doing my own insulin calculations.

Will I ever, ever get used to the fact that my daughter has Type 1 Diabetes?

I'm sure I will. The disease is manageable, if not controllable. The daily grind of it will be exhausting, but we are willing and able for it...after all, we still have Avery with us. The tests, the injections, the careful juggling of food and exercise and meds...all of that is cake compared to my child nearly dying.

The question is, will I ever forgive myself for not seeing the signs of it, and therefore allowing her illness to progress long past the point of danger. Will I ever forgive myself for all the ginger ale and popsicles I fed her, thinking her blood sugar was low after all that vomiting?

I'm not holding my breath.