Princess Punk and The D-Monster

Princess Punk was due for jaw surgery on June 17th. After 2 years of orthodontic preparation, 2 surgeons, multiple pre-op crap and a Facebook ticker counting down the days.

It’s been cancelled. Indefinitely.

Princess Punk’s HA1C is 9.4. The surgeon wants it below 7 for at least 6 months. In case you don’t remember, A1C is sort of a 3 month average of her blood sugars. 9.4 equates to about 275ish. 7 is around 150. She’s never been 7. Ever. Even when she was first diagnosed and the beta cells in her pancreas were still kicking out one last ditch effort to produce insulin, her A1C only got as low as 7.3.

2fea3b65779e84abda92bc3842589cd3Apparently, there is this fungal infection called mucormycosis that is particularly fond of patients with high blood sugar. Because of the nature of the surgery (i.e. cutting her jaw apart and putting it back together) there is an “astronomical” (this was the term used by the surgeon) risk of this fungus infecting the actual jaw bone itself. Once it’s  there, the only way to get rid of it, before it creeps into her brain, would be to remove the jaw.

So no surgery. The surgeon stated that, ethically, he could not put her under the knife with her A1C so high. Which I’m honestly thankful for. I just wish we could have gone through this sooner. Like before all the myriad of pre-op appointments and The Princess getting all excited about being able to eat corn on the cob and smile without feeling self-conscious about her underbite. She’s gorgeous. Period. But she is uncomfortable with the jaw thing.

Before you get all judgy about putting my cherished child through a potentially life-threatening surgery for cosmetic reasons, let me clarify that this surgery is medically necessary. Princess Punk has a 9mm gap between her top and bottom front teeth when she closes her mouth. She can’t bite into food. She eats pizza and ribs with a knife and fork. Her teeth meet in one spot in the back. Her entire chewing surface area is one tooth on either side. She’s getting headaches. And she’s going to end up with TMJ worse than mine if she doesn’t get this fixed. So this has to be done.

My strong, tough kid wept for 20 minutes in front of all of us. And then she said,

“Mom, can you help me fix it?”

Broke my fucking heart. But she finally gets it. She gets how important this shit is.

So we’re implementing a plan. A plan to kick The D-Monster’s ass so The Princess can get her sugar under control, not just for this surgery, but for the rest of her life.

Here’s the plan…

  • Low-carb- this is not going to fix the problem. But it will help the insulin resistance we seem to be coming up against because Ms. Punk has been eating way too much junk food. The more carbs and simple sugars she eats, the more insulin she needs. The more insulin she takes, the less effective it seems to be.
  • Vigilance- this is entirely under the control of The Princess herself. She has to measure every scrap of food or drink that enters her mouth and cover it with the appropriate amount of insulin. And she has to test at least 4 times a day, to make sure she’s not high and if she is, to cover the high with extra insulin. And record EVERYTHING. So we can make sure she is actually doing what she’s supposed to and so we can all know where her numbers are at.
  • Tech- She’s getting a new pump. With a continuous glucose monitor that checks her insulin 280 times in 24 hours. She’ll still have to test 4 times a day minimum, but she’ll be alerted of highs and lows a lot quicker. The new pump also has a transmitter that can upload her info directly to her (not yet purchased) iPhone. Yes, we’re getting her an iPhone. She needed a phone anyway and if this can help her keep track of everything, it’s worth the extra $20 a month.
  • Support- Weekly calls and monthly visits with the diabetes educator nurse at her endocrinologist’s office. She’ll help us adjust insulin levels and keep cheering us on when things get rough.

Here’s the problem…

The D-Monster doesn’t give a shit about plans.

Here’s how it went down yesterday-
Wake up- 241

Change site. Infected site. Okay, that explains the high. The insulin doesn’t particularly move well through infected tissue. She swore she just changed it, but since there was some (gag) pus there, I think she went a day or two longer than that.

Bolus

Test again- 285. Shit. Breakfast. Bolus for high and food.

Two hours later- 415. WTF?!? Bolus again. Check for ketones (negative). Swear a lot.

An hour later- 358. Down but not much. Hurry up and wait.

9df09d48021cc029a97babba2fa91ca8Lunchtime- Bolus for the food and the still over 250 sugar. Check for ketones again.

2 hours later- 267. Are you fucking kidding me. Use the syringe this time.

Dinner- 212. Syringe again for the high and the food.

2 hours later- 248. Just… I just… Can we just… How can she still… Fuck.

Shot.

Around 11- 177. One more bolus with the syringe. At 75% of normal because we’d rather not have a coma overnight.

Midnight- I’m still awake, eyeing the juice boxes on my dresser, ready to run in her room and resuscitate her because now she’s had TOO MUCH insulin.

This morning- 88. Fine. We’re using syringes for now. Maybe it’s the pump. She’s getting a new one in a few days. We’ll get the nurse on the phone tomorrow to prescribe some Lantus (long acting insulin) since her pump basal doesn’t seem to be working.

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