Saturday, June 16, 2012

On Getting My Daughter Back

Kaya has always been my odd duck. At age 12, she does her own thing her own way and is happy in her own world.  Sometimes this means she is distracted, or it may seem like she is not paying attention.

We attributed her frequent urination to an incontinence problems she's has since potty training. Since we live in the desert, it is not unusual to be thirsty a lot and drink several bottles of water a day.  With her recent growth spurt, and the accompanying weight loss, most people didn't think much of how skinny she became, especially since she still ate quite a bit. And if she was distracted or off in her own world all the time? Well, that was just Kaya.

But for the past few weeks, the weight loss started to frighten me - she looked like a survivor of Auschwitz. Her sunken eyes, her gaunt cheeks, and we could see every bone and tendon. Then she had no energy, started sleeping more, and the peeing was bordering on ridiculous.  I was worried, so I took her to the doctor, the most awesome of all doctors, Dr. Nguyen of Ivy Springs Medical Care.  We focused on her bladder issues as that seemed to be the worst problem.  He guessed it was an incontinence problem that could be fixed with meds, but wanted to rule out any biological issues first. We were off to the lab on Thursday, June 14th, around 9 am.  She spent Thursday afternoon, drinking 3 bottles of water, searching for bathroom, and getting in trouble for not working hard enough in her Tae Kwon Do class.

Friday morning at 8 am I received a phone call from the doctor. Could we come in right now? No, not this afternoon, but right this moment? And then the panic set in. Only bad news has the doctor calling first thing in the morning saying get in here NOW.  So off we went. I am trying not to cry and my Kaya bunny has no idea what is going on.  It was not until we were sitting in the room and I watched the nurse to a finger prick on Kaya that everything fell into place - like a crazy puzzle in my brain:   The frequent peeing, the  unending thirst, the unbelievable weight loss (she had lost another 1.5 lbs in the week between her first visit and this one, down to 97 lbs for a girl who is 5'5"), the lethargy and sleepiness, the fuzzy and distracted mind.  Kaya has Type 1 Diabetes.

My maternal uncle and grandfather both had it - I had watched them take insulin shots and watch their diets most of my young life, but so see my baby girl, so realize OH MY GOD SHE WAS DYING and no one saw it is a horrifying moment in a mom's life. Then to think of everything it means from this point forward, the shots, the glucose tests, the diet and exercise, just the schedule and focus it would entail was daunting beyond measure.

Kaya, fortunately, had a great attitude about it - she had read about a girl with diabetes in an American Girl magazine and was, if nothing else, relieved to know that it wasn't just her not being a good kid or a focused kid -she couldn't control her bladder or stay awake or focused because she was sick.

How sick?  Well, after trying to sort through all the information from the doctor and pharmacist, and reading as much as I could on the internet, I sat down to look at Kaya's lab work.  The Doctor got a phone call at 2 am from the lab after they ran her glucose serum test; they wanted to know if she was in a diabetic coma. The normal range for this test as indicated on her paperwork ranged from 60-99. Typically diabetes or the like is indicated at a range of 120-140 or above. Kaya's number?  623.   You read that right - I didn't miss type or forget a decimal. 623.  623623.  That number is etched in my brain.  There was human writing all over the paper work - FOLLOW UP NOW!  GET HER TO HOSPITAL. CALL THE MOTHER IMMEDIATELY.  The stuff of nightmares.

She is a healthier eater to begin with, so I think that saved us a bit.  She had a salad and some cheese for lunch, and low fat, low sugar yogurt for a snack in the afternoon.  After we picked up $200 in meds and hardware, we went home, researched sugar free foods that she could eat, picked up a few things at the grocery store, and then took her blood sugar level before dinner as required.  345.  I had to call the doctors, as he required that for any reading over 300, he told us how much short acting insulin to give her, and for the first time I injected my daughter with insulin. She was a trooper.

  After two hours, her sugar levels were at 245. Still not got, but better than 345, and a helluva lot better than 623.  Then we gave her the long lasting insulin, which was a bit more painful of a shot as it required more units of insulin, and she went to bed. We took a blood sugar reading at 12:30 that night (I had to make sure she didn't get low blood sugar now that she had insulin in her - a whole OTHER problem that could mean a trip to the ER). Her blood sugar was at 181.  Under 200 for the first time. Still high, but oh so much better.  Then I woke her at 7 for another reading, another shot and breakfast of low fat whole grain English muffin with sugar free peanut butter and Jelly.

 At this point I am only guessing and using what I remember my uncle eating as a reference - today is research and book buying day.  But Kaya took it all  in stride, and we working on yet ANOTHER type of new normal for our family.  And Kaya is so happy right now - not to have diabetes of course, but to finally have an answer, and she is excited to tackle this and get on living her beautiful life.

I am so proud of you, Kaya bunny.