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.

 

 

Diagnosis

 

Our first experience with T1D diagnosis was much like other families.  We didn’t have diabetes in our family.  We knew nothing about it, except our uneducated impressions that there was a type that affected kids and a type that seemed related to lifestyle choices.  We knew insulin was involved, and that the kids’ version involved shots.  Pretty sophisticated knowledge, right?

I guess it wasn’t surprising then that we missed the whole list of typical symptoms; increased thirst, frequent urination, weight loss, increased appetite, and mood swings.  Instead we used words like growth spurt, exercise, hormones, and impending teenage angst.

For several months before diagnosis, Anna was losing weight despite eating A LOT.  Like two western bacon cheeseburgers at a time, no problem.  I waved it off.  “Lucky kid, she’s going through a growth spurt and getting skinny.  Fast metabolism.”  Until the skinny got dramatic.  I remember watching a documentary on the holocaust and finding an eerie similarity to just how skinny Anna was becoming.

And the thirst…always drinking water.  She carried a water bottle everywhere.  When we changed her bedsheets, there were no less than 6 empty water bottles tucked under the pillows and stuffed animals near her head.  On any long road trips, she’d pack a bunch of water…and still finish them all before we’d reach our destination.

And the peeing…always needing to stop to pee.  This one I really was quite oblivious to.  I sleep fairly deeply, so I didn’t hear it at night.  But, my husband says he’d hear her getting up two or three times every night to go pee.  And then she’d down a glass of water on her way back to bed.  We both remember thinking if she were smart, she’d just stop the drinking so that she wouldn’t need to pee as much.  A real ah-ha moment for me was when we took a five hour car ride and we had to stop six times for Anna to use the bathroom.  That suddenly got me thinking something wasn’t normal.

And the moods…she wasn’t very happy.  She was moody.  She was kind of blah about life.  We just thought it was that teenage moodiness that everyone had warned us about.  She was 12 years old and we figured it was about that time to start the teenage power struggles.  She also had a dear friend move far away…we thought that had a lot to do with her depressed attitude at the time.

teen faceThe usual look we saw during the months before diagnosis.

In October 2014, Anna’s pediatrician sent us a note reminding us that it was time for their annual check-up.  I remember Jason asking me if we should go.  The kids (we also have another daughter named Holly, two years younger than Anna) seemed healthy to me.  Jason had some concerns about the emerging symptoms Anna was showing.  We decided to blow it off since no vaccinations were due at that time and it’s always so difficult to pull them out of school.

By March 2015, Jason couldn’t sit comfortably with the changes we’d seen now.  She’d lost even more weight and the thirst/pee thing was getting ridiculous.  So, he scheduled an appointment for the first day of Spring Break.  He took the kids in, while I was relaxing at a yoga class.

As a rule, nobody ever interrupts a yoga class.  So when the front desk walked in and called my name…I knew something was really not ok and that it had to be related to the pediatrician appointment going on at the same time.  I rolled up my mat, took a deep breath, and called Jason.

He remained so calm while telling me “Anna has diabetes.  They told us to go to the hospital right away and to expect to stay there for three days.  I’m on my way there right now.”  I don’t know how he did it.  Anna was in the car.  Holly was in the car.  He had to keep it together so they didn’t freak out.  Stud.

I got to my car and headed over to the ER where they were expecting me.

type 1 diagnosis day Photo from the first few minutes Anna was at the hospital.  Skinny?  Oh so skinny. Behind that smile was a whole lot of nerves.  What was going on?  Why hadn’t we explained anything?

Type 1 diabetes

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Just like Type 1 diabetes has a first day, this blog has its first day.

My name is Katie and my daughter Anna was diagnosed with Type 1 diabetes on March 30, 2015.  As this first year passed, I learned a lot.  Enough that I thought it was best to start a blog just in case these stories might help others.

If nothing else, this will be an opportunity to teach Anna about blogging, websites, photo editing, writing, and all those other important skills that she might want to access for the future college applications.