Hospital Education

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The first thing the nurses did was take a blood sample from Anna to test her for diabetic ketoacidosis (DKA).  As they explained it to us at the time, “If she has high enough blood sugars and ketones present, her blood could become acidic and low pH.  If she’s in DKA, she will need a slow infusion of insulin through an IV.  If she’s not in DKA, we can just do a shot of insulin.”  Anna and I looked at each other…neither sounded like good options, but clearly they thought the shot sounded just fantastic.

And then they asked Anna for a urine sample.  Poor girl, her Spring Break just kept getting worse.  She could not believe they wanted her to pee into a pan, save it, and just leave it there in the bathroom.  She was horrified at the thought that someone’s job involved handling pee.  She felt awfully guilty for the trouble she was causing for the nurses.

ketone check

About 30 minutes later, the Doctor came back to tell us she wasn’t in DKA and Anna got her first shot of insulin.  The doctor then proceeded to ask about our family history, whether she’d been sick recently, and a bunch of info about all the prescriptions she was calling in for us to pick up at the pharmacy before we got discharged.

That first batch of prescriptions is no joke.  Blood test strips, ketone test strips, glucagon emergency shots, alcohol wipes, syringes, rapid insulin, long-action insulin, medical waste container, lancets, and blood glucose meter.  I felt like I’d just been punked…this couldn’t all be necessary.  Could it?

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In the hospital, it got old really quickly.  Not much rest, not much insight on the details of diabetes management.  We had a dietician, social worker, doctor, nurse all come in and say basically the exact same thing that the other one before had said.  “Count your carbs, give insulin.”  I asked a lot of questions about the details beyond COUNT YOUR CARBS, but the answers were vague and weren’t given with a whole lot of confidence behind them.  Do we have to limit the carbs in a meal?  No, not necessarily.  How many carbs per meal should we aim for? Umm, 80 grams or whatever you feel comfortable with.  What will exercise do to her?  It depends.  Depends on what?  Lots of things.  How often should we be testing her blood sugar?  Before meals, before bedtime, and any other time that seems like you might need it.

Anna learned how to prepare her own insulin doses, and I learned how to do the injections.  Unfortunately for Anna, she also had her braces tightened the same day she was diagnosed (not a good day at all)…so it took awhile before the hospital food services could deliver food that was soft enough for her to eat.  Oddly, the meal was delivered with a note on it that gave the carbs in “exchanges” vs. “grams”.  We weren’t taught exchanges, didn’t know how to dose those, and had to google the carb count of the food while in the hospital for diabetes.  Seems strange, right?  You’d think hospital food services would be up-to-date on the latest techniques in carb counting.

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I grew frustrated fast.  It was an unsophisticated education complete with a Pink Panther “welcome to type 1 diabetes” book that was supposed to really make me reassured?  We were given a carb ratio (1:20), lantus dose (8 units daily), and given an appointment at the nearest pediatric endocrinologist (4 hours away at Stanford Diabetes Clinic) in two days to finish our education.  I decided that while the hospital staff was kind and caring, my real diabetes education was likely going to have to wait until Stanford.

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We only spent 22 hours in the hospital.  You couldn’t get me out fast enough.    Anna wanted the comfort of home and her own bed.  I was eager for the answers.  I’m an engineer…I needed more certainty and clarity.

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For the record, if you’re reading this while sitting in the hospital while your loved one is being treated for new onset type 1 diabetes, here’s what I recommend you check into.

  1. Choose a pediatric endocrinologist that believes in early continuous glucose monitoring (CGM) and insulin pump use.  Some endos prefer to have kids wait for a year before allowing them on an insulin pump.  This is straight-up bull sh!#.  If your insurance company has a 6-month waiting period, I suppose that might be a consideration…but don’t wait beyond that.  Having an insulin pump and CGM made all the difference for us adjusting back to an active, normal life again.  Even if you choose to stay on injections, having a pump on a shelf ready-to-go when you are ready is smart planning.  I’d have been furious if we were arbitrarily told we had to wait a year for a pump.
  2. Consider asking your hospital doctor or endo to prescribe insulin pens vs. vials of insulin.  Insulin pen needles (vs syringes) are much smaller and less intimidating for kids.  We also enjoy the portability of pens, they fit easily into purses and are less “obvious” than syringes if you want to avoid public stares when you have to bolus.  If possible, depending on your diabetic’s needs, ask for half-unit pens if they are very insulin sensitive.
  3. Buy the book Think Like a Pancreas as soon as you can.  You’ll be better educated, feel empowered, and have a good reference when the numbers aren’t what you’d expect.  It will help you understand what your endo is doing when he/she makes insulin adjustments and why.
  4. Breathe.  As often as you can, nice deep breaths.  This will be ok.

 

 

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