The Butterfly Effect

A man allegedly committed felony assault and my daughter ended up in the ER in DKA (diabetes ketoacidosis).

butterfly-effect

While this story will in no way be as sexy as the Ashton Kutcher movie The Butterfly Effect you may still want to grab some popcorn and a soft drink because it will likely be long and wordy.

The story begins with a man whom I’ve never met. He allegedly committed an act of felony assault. The man needs to stand trial and so a panel of jurors are needed. My number is called and thus begins a two-day process of selecting the best panel of jurors to decide the fate of the defendant. Day one of the process passes without any issues back on the home front with three kids with diabetes managing themselves while mom is away in the city dutifully participating in our judicial system.

To make it possible for me to attend to my civic duty, my husband agrees to stay home an extra hour in the mornings in order to get the kids off to school on time. Day o1 everyone did exactly as directed. Day 02 dad thought it would be nice to treat the youngest kid to a Starbucks sandwich before school. Sweet of him, right? Well yes, but he made one (almost could have been fatal) mistake – he mentioned Starbucks to my youngest while in ear shot of the oldest. My oldest has a bit of a Starbucks addiction, so of course she sweet talks daddy into taking her as well and then dropping her at school rather than insisting she ride the bus. Shouldn’t be an issue right?

Well lets back up to just 45 minutes prior when I check in with my daughter while she is getting dressed for school. I asked a reasonable question – the same question I asked of all my kids that morning.

“How much insulin do you have in your pump?”

Why did I want to know? Because I was going to be 45 minutes away in a court room with no cell phone. I didn’t want any of the kids to find themselves without insulin. True they all have insulin and pump paraphernalia in their health offices but its easier to be proactive before school.

The boys each had plenty of insulin for the next 48 hours.

My daughter had just 33 units of insulin in her pump. I asked her what her thoughts were. She believed it would be sufficient to last the school day.

Her calculations were based on her typical grab & go breakfast of a banana and granola bar. <<<this is important in the story.

So off I went for day two of Voir Dire. (It sounds super sexy but is a painfully slow but a necessary process in selecting a panel of jurors.)

My husband takes my daughter to get Starbucks and drop her off at school. The youngest chooses to skip Starbucks to instead play on his computer for an additional 30 minutes and then walk himself to the neighbors for a ride to school.

Ahhh Starbucks with your delightfully delicious breakfast sandwiches and steamy creamy sweet beverages of pure bliss. This story wouldn’t have been possible without you.

Breakfast sandwiches and beverages received, my husband dropped my daughter off at school – likely a tad bit after the bell.

Meanwhile in Seattle I am checking in with the bailiff and ordering my own cup of coffee from a machine in the juror pool room.

The potential jurors are called to the court room. In the elevator up I send a group text to the kids reminding them to have a good day and check blood sugars. Then phone silence.

While I was listening to an older gentlemen/potential juror explain to the court that we never actually landed on the moon, my daughter was back in class discovering she had forgotten to bolus for her Starbucks.

Here is where the grab & go breakfast plays a role – she based her daily insulin need calculation on a 30 gram breakfast, 45 gram lunch and daily basal needs. 45 minutes before she left she didn’t know she would get her fix at Starbucks or that her breakfast would actually be closer to 100 grams of carbohydrates. This changed everything. While she woke up with a pretty blood sugar of 124, she was already above 500 when she checked her blood sugar in class. Based on her blood sugar correction factors she barely had enough insulin to correct. That was before lunch.

Now at this time I would like to say my daughter is a teen. She isn’t all consumed with diabetes management. She typically makes good decisions regarding food, insulin dosing, and general diabetes care. Yet she is a teen. She also knows I am in a court room and my phone is off. So she makes a decision that she will likely never make again and it was a learning opportunity. She decided to ration her insulin rather than refill her pump at school.

She decides to take 3/4 of the insulin needed for the blood sugar correction. Thus leaving insulin available for her basal insulin. (I know for those not using an insulin pump or those that have no experience with diabetes some of this may all be mumble jumble – sorry). She eats only 1/3 of a her lunch and uses the last of her insulin. She is still well over 500 at lunch.

When she arrives home she refills her pump with fresh insulin. That was at about 3pm.

I was home but catching a 15 minute cat nap before heading out for a quick birthday celebration with friends. It had been an exhausting day listening to the prosecuting attorney and defense attorney ask the same questions repeatedly. I had been dismissed from the case for reasons not explained to me. (although I have some good ideas as to why)

At 6pm she checks her blood sugar and is now over 600. She decides her pump site has gone bad and replaces the pump site but uses the same infusion site tubbing from the previous site.

I am unaware of most of this. She did tell me she was high and was doing what she needed to do. There was no need for me to ask questions or try to micromanage her. She has done it all before and I was proud she was doing what she needed to do.

She asked for a ride to the talent show at her high school. I obliged.

Two hours later I get a panicked phone call.

“Mom. I need you to come now. I need you to come get me. I feel so sick. I can’t hardly see and my legs are killing me. I need you to come get me now.”

I had been out shopping with the middle kid so we rushed the check out line and sped towards my daughter.

In the car she said “I need to go to the hospital”

We dropped the boy at home, she grabbed some comfy clothes and I grabbed a bucket and a blanket.

She was in the bathroom vomiting. She held a Keto stick that showed massive ketones. (A Keto stick is a strip of paper with a color changing tab that a person with diabetes pees on to check for ketones – I can’t explain it all so if you don’t know – ask) And yes I know a ketone meter is more accurate but tell that to my insurance company would you – thanks.

We rushed to the hospital. The whole ride to the hospital my daughter looked as if she was about to drift out of consciousness. I drove faster. All the while rotating scenarios in which I would get pulled over for speeding while my daughter went into a coma and how I could possibly end up being the most knowledgable person in the ER about DKA. Crap – drive faster.

We arrive and rush into the ER. It was a ghost town thankfully. It takes only 3 minutes to get her checked in and back in a room with a nurse looking for veins in her severely dehydrated arms while another asks questions.

What is her blood sugar? Above 600

Has she vomited? Yes

Do you know if she is positive for ketones? Yes

When was her last dose of insulin? 30 minutes using her brothers pump. 6 units

Is she wearing a pump? Yes but it’s disconnected – we think somethings wrong with it or her site.

Holy crap they speak my language. Amen.

4 attempts and the IV is in.

6 vials of blood are collected

Fluids are descending to hydrate my girl. Another 6 units of insulin is administered.

Heart rate 124

Pulse Ox 69

30 minutes later her color is improving and her heart rate is going down while her pulse ox is going up.

1 hour in and her blood sugar is in the 400s.

Ketones still very large.

Electrolytes improving.

While waiting on the doctor I did exam her insulin pump. There was no insulin coming from the tubbing. There was a smell of insulin coming from where the site tubbing attaches to the pump cartridge. Perhaps it wasn’t attached properly. I removed the old tubbing and replaced it with a set I had brought with. I primed the tubbing until insulin drops dripped from it. I attached it back on my daughter so she would be receiving her basal insulin.

The doctor came in then. He was ending his shift. He suggested once she is more stable we transfer to the children’s hospital in Seattle. It was a longer drive which is why I chose to go to the Swedish hospital only 15 minutes from our home. Plus my daughter is nearly 16 and prefers to be treated as an adult.

I expressed how impressed I was with her care so far and didn’t feel the need at that point to transfer her to children’s hospital. He left to chat with someone at children’s hospital. Then he returned with another doctor replacing him.

The other doctor and I chatted about ketones, hydration, blood sugars, and our prior experiences with DKA.

We didn’t really have any. When my youngest was diagnosed at age 2 he was in DKA because we didn’t even know kids could get diabetes – we thought it was flu-like.

Aside from that, the kids would occasionally have trace ketones if they forgot to dose for a meal but we would always handle it at home. Once when my daughter was 12 she got the flu and we went in to keep her hydrated after a few times vomiting. But she wasn’t in DKA.

After the staff had checked her level of ketones again and noted they were not going down very quickly I asked for crackers and jello. I explained that to get rid of ketones, carbs are also needed. I knew it sounded silly to the nurse but she obliged. My daughter happily ate 4 crackers and some red jello.

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I was impressed with how professional, compassionate and mostly knowledgable the ER staff were regarding DKA.

Still when they hung up the second bag of sodium chloride solution I stepped out to chat with the doctor (not to be confused with The Doctor, the last time lord).

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I questioned him about the possibility of cerebral edema. (I shouldn’t even know those words. I don’t want to know those words. I have not shared a link to explain cerebral edema because I am not qualified to determine which sites contain the most accurate information)

He said he was monitoring things and felt that a second bag would be beneficial and wasn’t concerned about cerebral edema.

I learned about cerebral edema a couple of years back when reading a story of a child lost in the ER because of the aggressive treatment of DKA. I don’t recall the article or any details aside from the idea that aggressive treatment of dehydration combined with aggressive insulin may have resulted in swelling in the brain. I am still not sure there is any consensus on what exactly causes cerebral edema in people (kids especially) during treatment of DKA. There is a whole lot of medical mumble jumble out there that talks about it but much of it goes over my head. I just knew I wanted to ask about the possibilities, especially in an ER that does not specialize in children or DKA.

My daughter fell asleep as the second bag of sodium chloride slowly dripped into her IV while I watched another episode of Doctor Who on my phone. Thank you Hulu.

Each hour a nurse named Don had come in to check her blood sugar. He was gentle and kind and did his best not to wake my daughter.

We had been in the ER for 4 hours thus far. Her blood sugar was still in the 300s. The doctor came in and administered another 4 units of insulin via her IV.  She still had half a bag of fluids to finish off.

Another 2 hours of sleeping for her and The Doctor for me.

When the fluid was finished, her blood sugar was under 200 and her ketones were down to moderate the doctor asked me what I wanted to do. I said “take her home”.

We checked out with her wrapped in the blanket I had brought.

Once home she climbed into bed and I got comfy on the couch to watch more Doctor Who while I waited another hour to check her blood sugar again.

I fell asleep after I checked her at 4am.

On Friday she slept most the day. I napped for a few hours too. She still was showing small ketones throughout the day but they were going down gradually.

It was a scary exhausting night.

As for the Butterfly Effect also referred to as Chaos Theory:

“In chaos theory, the butterfly effect is the sensitive dependence on initial conditions in which a small change in one state of a deterministic nonlinear system can result in large differences in a later state.”

Would my daughter have ended up in the ER had I not been miles away at the court-house in a court room with my phone off? Would she have called me from school to alert me to her lack of insulin? Would that phone call (had it taken place) stopped the perfect storm of questionable decisions and tech failure? If the defendant hadn’t allegedly committed felony assault would I have still been in a court room? Maybe I would have served on a municipal case involving a red light violation and been done before all the crazy started? Would the chaos have happened if she had boarded the bus with her grab & go breakfast rather than going to Starbucks?

No one can say. My daughter is well and has also learned a life lesson. Better for her to have learned that lesson now when she has a support system to deal with the big issues than when she is an adult on her own without as much support or financial resources. A friend of mine has always said home is a safe place to fail.

Parents – DKA is nothing to shrug off. It is beyond scary how quickly a missed bolus and a few mishaps can escalate into true danger. I know many don’t always check ketones as prescribed by our child’s endo. At least we don’t. Blood sugars fluctuate frequently and a missed meal bolus can usually be corrected within a couple of hours with minimal immediate harm.

Our take-away: If high due to a missed meal/snack bolus – correct by administering insulin. Do the recheck in an hour to be sure the correction bolus is lowering blood sugar. If it is not, trouble shoot other possibilities such as a bad infusion site or bad insulin. Give a second correction preferably by injection to be sure insulin is indeed administered. Then work to fix pump issues. Always plan for emergencies – maybe don’t leave the house with just enough insulin to squeak by with. Check ketones when high for an unknown reason or after staying high despite correction bolus. Be sure someone knows what’s going on other than yourself. My daughter was in a school full of folks who are able and willing to assist her even if she couldn’t contact me. Pride always comes before a fall.

If you actually made it to the end of this post you are a rockstar or need to get out more. But seriously – thank you for reading.

PS.

It was very bright in the room. I tried all the normal white light switches and was able to turn off some small lights but the huge florescent light directly above my daughter wouldn’t turn off. Then I noticed two light switches on the back wall that were red. My daughter told me not to touch them, that they looked important. Was that a dare? 

IMG_5727The large florescent light went out. The hospital continued to function. Plus I had already plugged my phone into the red power outlets labeled “emergency” which were clearly a gateway to my reckless behavior.

 

About Christina

Mom of 3 kids, all 3 have Type 1 diabetes - I blog to share stories. I am not a medical professional and my thoughts are my own. Please do not make changes to your medical care plan based on my stories - always consult your medical team. Hope you find something in my ramblings helpful and or amusing. You can find me on twitter @momof3T1s and on my Facebook page Stick With It Sugar. May all your dreams forever be bolus worthy.
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6 Responses to The Butterfly Effect

  1. Bob says:

    I’m glad she’s well and learning, and I’m glad you had the Doctor to keep you company.

  2. Colleen says:

    Glad she’s ok. Held my breath reading this.

  3. Elisheva says:

    Wow. Good for you for keeping your cool. Hope she’s doing better now. And learned a lesson. *HUGS*

  4. shannon says:

    man oh man, thank you for taking all the time to document your experience. that is some scary shit. I never even heard of the edema business. SHEESH.

    so much word on “safe place to fail” <333

    lol @ gateway to reckless behavior. OMG.

  5. Sara says:

    Holy Crap! I am so glad she is doing better now.

    It’s scary letting go of control and letting them make their own mistakes. She won’t likely forget to refill her pump anytime soon.

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