Friday, April 11, 2014

1 Year of Type 1 Diabetes :: Part 3 :: Looking Back on Aaron's Diagnosis

Our son, Aaron, was diagnosed with Type 1 Diabetes a year ago.  It was Monday, April 8, 2013.  

Aaron and I have been working together on a few posts to share his story with you.  We had recorded a little video of Aaron to share with you today, but it's harder to record a decent little video of a 7 year-old in a busy household than you may think.  Needless to say, it didn't come out as I had hoped and it's not here yet.  I'll alert the waiting world if we ended up getting something worth including here!   

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(Read Part 1 and Part 2 here)

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Part 3
Aaron's Diagnosis

(the photos in the post are from my phone, taken the day Aaron was admitted to the hospital)

It was a Sunday morning when I finally said, "No more.  We're going to the doctor."  The next morning Aaron got dressed for tutoring and I emailed his tutors saying that he had a doctor's appointment, he would be a little late.  Russ took the morning off from work and I called the pediatrician.  He drinks a lot of water.  I want to bring him in right away.  I imagined the receptionist rolling her eyes at my concerns of a well-hydrated child as she   penciled us into the schedule.  "It's one of those moms," she'd say as she hung up the phone.  (I hope you realize this was all in my ridiculous head, and that our doctors and all their staff have never been anything but awesome.)

At the pediatrician's office I continued to worry that I was being  a paranoid hypochondriac on behalf of my child.  Have you ever brought your child in and they say, "Yep.  He has what we professionals call the Common Cold.  Go home, please.  And only come back if this turns into something really serious."  That's what I was afraid of.  But I was even more afraid that Aaron's symptoms would actually turn out to be something.  

They took a urine sample and asked their questions.  Increased thirst and urination?  Yes.  Increased appetite?  Yes.  Weight loss?  Yes.   Altered activity levels?  Yes.  The doctor said, "So, do you think you have an idea of what we're probably looking at here?"  I was in a fog, but I had done my Google-ing and WebMD-ing and said "yes."  I knew he meant diabetes, but I still didn't have a clue what diabetes meant.  My first thought reflected the most common misconception of type 1 diabetes - I guess our whole family will have to change our diet and lifestyle to accommodate this.  

The doctor said, "We're going to make arrangements for him to go Children's Hospital."

I thought, Ok.  We'll work that in this week.

The doctor said, "I'll call the ER and they'll be expecting you within the half hour."

What?   The ER??  I was going to drop Aaron off at tutoring after this...

"Aaron is dehydrated.  They'll address that first, then start blood work and testing to officially diagnose diabetes."

I called Russ and said he'd better take the whole day off.  I was on my way to the ER with Aaron.  

At the ER we bypassed the crowded waiting room (bonus!) and were seen right away.  I'm sure you can imagine what Aaron went through next - IV's and blood tests, urine tests, and more questions.  I was in shock and was operating on something like autopilot.  But Aaron was amazing.  He did not resist any of the tests or needles, and asked questions about it all along the way.  He was friendly, cheerful, and inquisitive.  

Aaron was, thankfully, not in a state of diabetic ketoacidosis (yeah, I didn't know what the heck they were talking about then either...) but he had trace ketones in his urine.  His blood glucose levels were over 700 when first tested in the ER.  His A1C was over 12%.   It all meant nothing to me because I still didn't even know what the normal ranges were.  We were in the ER for several hours.  Aaron received his first insulin injections and as much food as he wanted.  It was when they started feeding him that I started to realize I probably didn't really know much about type 1 diabetes because why were the nurses pushing so much food on him??  Like hot dogs and juice and cookies and stuff??  

The doctor said, "He will need to be admitted so that we can get his glucose levels under control and teach you about managing type 1 diabetes."

I thought, Ok.  We'll work that in this week.

"We're making arrangements for his room right now.  You'll brought up there soon."

I was reeling.  Even though I had had an inclination that the diagnosis would be diabetes, I still didn't know what it was, or why it was so serious.  How had we gone from a somewhat casual visit to the pediatrician to hospitalization in one morning???

I called Russ to say that this was a bigger deal than we thought.  Take the next couple days off of work.   (note: "bigger deal" is not an actual medical term ;) )  

We were so blessed to have my parents help out watching the other kids while Russ and I took turns being at the hospital with Aaron.  One or both of us was always with him.  But it was I who spent the night on the infamous hospital plastic chair-bed.  However, the night was made somewhat more bearable when my mom suggested a laptop and a soothing Pandora station.  Aaron managed to sleep that night.  I managed to listen to a lot of a soothing Pandora station.

The care we received at the children's hospital was wonderful.  Aaron actually enjoyed his time there and was disappointed to be discharged after only one night.  He rolled with the punches, offering his fingers for blood tests and his arms for injections like he'd been doing it forever.  He enjoyed charming the nurses and doctors that were in and out of his room caring for him and educating Russ and me.  He was especially excited about the extensive food menu that was available to him 24 hours a day.  

(For the longest time I was so embarrassed about how much he ate at the hospital - he literally could order whatever he wanted any time of day - and he did.  It wasn't until months later that I learned that kids are often ravenous after their first insulin treatments because their bodies haven't been metabolizing food properly for so long that they truly do need to feed their now properly-working bodies tons and tons of food!  Whew!  Embarrassment gone.)  

The staff were good to us.  They were very attentive to Russ and me and were sensitive to the stress of our new situation.  We were overwhelmed, to say the least.  We were given so much new and unfamiliar information in such a short time.  The staff kept reporting numbers - glucose levels, ketone levels, A1C levels - and we still weren't quite sure what they had to do with anything.  

And then we went to the "learning" sessions.  My parents were still at home with the rest of our crew;  I can't even imagine managing to concentrate on anything if anyone other than the best grandparents in the world were home with the others for so long!  Russ, Aaron, and I spent an entire morning learning how to use a blood glucose meter, pen needles, blood and urine testing strips, and emergency syringes.  We were given insulin dosing instructions and mathematical formulas to figure doses for every meal and snack.  I recall feeling like a deer in headlights.  I was listening and taking notes and nodding my head in agreement with things, but the reality of this new life for Aaron and us wasn't sinking in.  It was like I had to block out the overwhelming-ness of it all so that I could focus on the information. There was so much to know.  W
e were told to prick our own fingers so that we would know what it would be like for our child who would check his blood five or more times a day.  And then we had to give a practice insulin injection to a sponge.  That was when my heart sank - I slowly realized that this was really happening and that Aaron would be living with finger sticks and needles for the rest of his life.  He could never just "grab a snack" and go.  He would always be dependent on manufactured insulin to remain healthy.  He would always be sorting through numbers in his head - carbs, dosings, readings, and target levels - just to do what almost everyone else does without thinking: eat.   

Then we were given a crash course in carbohydrate counting.  And I started to cry.  The instructor made it sound as simple as "look on the package of granola bars or can of soup and it will tell you how many carbohydrates there are per serving."  But what if you don't eat store bought granola bars or soup?  How do you even begin to count homemade food with multiple ingredients??  Or what about peanut butter and jelly sandwiches or fruit or casseroles or yogurt or EVERYTHING ELSE??  It was the most overwhelming information to take in of all - Aaron's care would depend on adding up every little carbohydrate, every meal, every day.  It would be time consuming and tedious.  And we would have to start doing it right away.  Because that afternoon they were sending us home with our son who now had a lifelong, incurable illness that required continuous monitoring and treatment. The burden of the work would fall on us, his parents.  But the reality of the inconvenience and pain would always be with Aaron.

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Ok, hopefully that's enough of the "Looking Back" melodrama.  Check back here on Monday where I'll lighten things up with some highly scientific Internet memes that will singlehandedly (and scientifically!) debunk the common misunderstandings and myths about type 1 diabetes!!  


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