Wednesday, February 24, 2010

On life and how it sometimes sucks

Not Thing 1, and not Thing 2 but That Other Thing (TOT), the one that is six was just diagnosed with Type 1 diabetes . I'm using this post to disseminate info to those who need or care to know quickly. You can not imagine what kind of circus this diagnosis has set in motion with TOT and myself are in the Center Ring.

The kid has had profound fatigue issues since the beginning of the school year. So much so, in fact, that it was a REAL struggle to get what should have been 20 minutes of easy homework done most evenings, she just wanted to go to sleep or zone out. At some point she began to have trouble with night time bed-wetting and complaining of headaches. I thought there might be a problem in the classroom so I raised the question with her teacher---nothing had been noted so we just kept struggling. We got her night time potty issues taken care of but she was still really thirsty all the time and she was waking three or 4 times each night to empty her bladder. And headaches, tummy aches---vague, minor. And school wasn't really getting better...but I know TOT is a very smart and capable kid so it wasn't making sense. I don't know why I wasn't thinking there was one big problem driving all of this.

And then I noticed she was getting REALLY skinny. I mean REALLY skinny; scary thin. Still tired all the time, dark circles. We ramped up the mandatory sleeping, started working really hard to put weight on her and then---the telltale sign of human metabolism gone awry: the smell of ketones (sweet, fruity) on her breath. A quick little test of the urine in her pediatrician's office on Monday afternoon got us a free stay at the hospital where we are now.

We are learning everything we need to know...well, they're trying to tell us but its way too much to get your head around. We're working on stabilizing blood sugar at a good level and trying our best to get her hydrated, let her get rested up and allow me to figure out when I won't be too scared to allow her to be somewhere I can't see her in case I screw up or things go wrong.

And then we have to begin clearing administrative hurdles to allow the school to monitor blood sugar, to allow snacks (when we figure out when they should be...), make sure all of her teachers know how to manage her needs and recognize the bad signs. And catch up. Try to make it out of first grade by September. At least I'll get to see her in the middle of every day: she'll have insulin at least four times per day and one of them will be at lunchtime. Since school health room staff won't do that, I will.

That's alls what I know. Thanks to everyone for love and concern. We're just trying to keep our heads above the sugar-free water...

7 comments:

Melissa said...

Kathy - I am so sorry that you all are going through this. You have had a tough couple years and it breaks my heart to see you and L struggle so much. She is lucky to have a mommy and daddy who worry about her and caught the signs and are getting her the care she needs. My thoughts and love are with you all.

Dag said...

I am so sorry!! What sad news! This must be so so tough on you guys and I so feel with you!! I had gestational diabetes so I know a little, just a little bit about the whole issue. My prayers are with you and I'm sending lots and lots of good vibrations your way!!

Special K said...

Goodness. Poor little gal! Same thing happened to my neighbor-kid - she lost a TON of weight and now she has to be a little nutritionist even though she's just a little gal. Lot of responsibility... good luck to you gals...

KHM said...

Us gals just love all you gals...

Special K... I think we might need amigurimi ice cream cones. Maybe I should get my hooks out.

Drew said...

Poor thing! I'm sorry to hear that. My cousin was diagnosed as a small kid too and the teenage years have been rough on her because she doesn't take it seriously enough (not being able to eat what her friends eat, etc. and her blood sugar goes awry), Hopefully you can instill a good sense of the condition in TOT (that's funny by the way) as she gets older.

We'll keep you all in our thoughts and good luck.

Don said...

Kathy,

Sorry about your little one.

With my a1c creeping up I recently had to switch to a diabetic diet in an attempt to lose weight and lower my numbers. As tough as it was/is, I continuously tell myself how much more difficult it would be had this happened as a child.

I feel for you and your daughter and wish you all the best. During my diabetic education class, the nurse who is about my age, middle 50s, stated that she thought that there would be a cure during our lifetime.

Hopefully that will be the case.

Good luck.

KHM said...

Don, Drew, everybody--in some ways her youth at diagnosis works for us: she is less "set in her ways" and hasn't developed tooooo many attachments to sweets that will be lost to her...

And yes, these days there's much more hope for cure and there are remarkable technologies that come close to mimicking the function of the pancreas---continuous glucose monitors integrated into insulin pumps...the pancreatic equivalent of a pacemaker! These things, I'm sure, will all be part of Lindsay's life.

Don, I have far too many adult family members who are in the situation you are in. I wish YOU good luck and I know you'll have the support of a great family. Change is tough but the impact of diabetes is definitely worse. Get 'er done!