the red box

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**Disclaimer**  The information in this post is in no way shape or form intended to be medical advice.  This is simply a recount of what happened to our family and how we muddled through an illness.  I am writing this in order to have a written account of how we handled this situation, as it will, in all probability, happen again.  I am also writing this for other T1D families who wrote their own stories that provided me the courage to let go my fears of 'the red box'.

*If you are not familiar with Type 1 Diabetes, some words used and procedures followed will not make sense. I apologize in advance for any confusion, however, please stick with the story and learn why we pray for a cure.

The red box was first given to me 1 day after Ellie was diagnosed with T1D.  I was at the pharmacy picking up prescriptions Ellie's new endocrinologist informed us would be necessary to treat her T1D . . . the list was long.  Two types of insulin, syringes, alcohol wipes, glucose tabs, blood sugar testing meter and strips, and a red box labeled 'Glucagon Emergency Kit' were all waiting on a counter, along with a pharmacy tech ready to explain each item and their use. 

I knew what every thing was except for the red box.  When the tech picked it up and opened the lid, my eyes focused on a very big needle and a very small vial containing a powdery pill.  The tech went on to explain how to flip open the lid on the vial, un-cap the needle of the fluid-filled syringe, and plunge the liquid into the vial.  She showed me how to slowly swirl the vial until the liquid dissolved the tab until the 'new' liquid was clear.  I was then instructed to draw-up the 'mysery liquid' into the now empty syringe, clear the air bubbles, and proceed to inject my daughter (through any clothing barriers) with the nauseatingly big needle into a large muscle group.

:: blink blink::

"Oh!", she said as she noticed my paling skin and sudden shakiness.  "I am sorry.  I didn't even tell you what this is! It is glucagon. Do you know what this is used for?"

::blink blink::  "No", I managed to squeak.

"Well, your daughter should have this with her at all times.  It is a glucagon emergency kit and she will need it when she has a hypoglycemic episode.  Glucagon is a hormone and it will signal the liver to release any stored glucose (sugar) in the body.  It will help her when she is seizing or has lost consciousness due to a seriously low blood sugar.  You must call 911 after administering" she stated.

:: tears welling up and spilling down my cheeks::  "Um, I haven't learned about this yet.  I don't know what you are talking about.  :: choking on my words and trying to hold back an 'ugly cry' episode ::

"Oh. Well. Um, you need to know about it and understand it and, oh. I am sorry" as she quickly stuffed the red box into a paper bag.  "I am sure your Dr. will explain it again.  Just remember, it is really important" she quipped.

And this is how I came to know about the red box.

Eventually the Dr. and diabetes educator explained the need for the contents of the red box, how to use it, how many red box emergency kits to have around the house (we have 3), and all the other scary details about situations when and where we might need to crack it open.

I shared with anyone Ellie might be with, without her father or me, all about the red box and how 'In An Emergency' one should administer it and call 911.  An emergency such as seizing or losing consciousness.  I believe the red box scared everyone else as much as it did me, but I felt comfortable and 'insured' once we discussed it's use.  "You will probably never have to use it" I told them, "This is just in case . . . ." and the subject was closed.

Ellie was diagnosed with T1D in September of 2010 . . . . and we have not had to even touch the red box except for transport and explanation.  529 days without An Emergency. 

You know where this is going, right?  I am not good with suspense. 

Ellie came down with a stomach virus this past Friday afternoon.
Vomiting and T1D are arch enemies, you see.  Losing fluids/foods causes blood sugar to drop.  Dropping blood sugars cause the body to search for energy. Searching for energy other than sugar leads to feeding off of fat in the body.  Feeding off of fat and other tissues causes the body to produce ketones (a strong acid). Ketones require insulin and water to flush them out of the body.  Insulin causes the blood sugars to fall . . . . do you see where this scenario is headed?  If a T1D makes ketones for too long, they go into Diabetic Ketoacidosis (DKA), which happens quickly and requires immediate medical care.  DKA is the leading cause of death in children with T1D.

So, Ellie started vomiting and I knew we were in for a long and closely monitored night.

We checked blood sugar numbers every half hour and ketone size every 2 hours . . . numbers dropped and ketones slowly increased.

We gave Ellie carb-filled fluids (to raise blood sugars) and so we could give her additional insulin (to lower ketones) . . . . she vomited.

We gave her mints to suck on and ice chips to try and keep her hydrated . . . . she vomited.

We tracked every thing that went in, and everything that came out.

We called her endocrinologist and updated her every two hours in an effort to stay in the comfort of our home vs. going to the hospital.

Our attempts to keep Ellie 'stable' eventually led to thinking about, and then using, the contents of the red box.

As you can see on the whiteboard, around 6pm we were losing the 'balance' battle.  I called the endo. and we discussed options.  One of the options I mentioned included utilizing the contents of the red box to give a mini-dose of glucagon.  If administered correctly, the glucagon would signal her liver to release stored caches of glucose.  We both decided this would be a good way to raise her blood sugar without the risk of her throwing it back up since it would be in the form of an injection and go straight into the blood stream.

While on the phone with the Dr., I slowly broke the seal of the red box and proceeded to follow the instructions for mixing the solution.  The Dr. gave me the dosing instructions necessary for a child Ellie's age and for this particular use.  She then told me to wait 30 minutes, give the glucagon time to work, and recheck Ellie's blood sugar numbers.  We agreed to speak again in 2 hours, or earlier if needed, and hung up the phone. 

I think everything went into slow motion at this next moment. 

I was scared. 

I was nervous. 

I was wanting to back out of the deal. 

Then I looked at Ellie and decided it needed to be done.  A recheck of her blood sugar showed a 54 (not written down) and she was feeling very shaky.

Glucagon filled syringe in hand, I injected Ellie with the contents of the red box. 

I thanked God for my steady hand . . . . and then we waited.

30 minutes later her blood sugar was at a beautiful 110.

The cycle was repeated, unfortunately, one more time.  This time Ellie grabbed the syringe and injected herself in her stomach . . . . letting me know I was a poor "shot-giver" and she would just handle this one.

More phone calls to the Dr. revealed we could repeat the glucagon mini-dose every 30 minutes as needed (the vial, once mixed, is good for 24 hours if refrigerated), but that eventually the stores of glucose in Ellie's system would be used up and the contents of the red box would no longer be affective.

In other words, we were reaching the end of our stay at home.

By 10pm, Ellie's ketones were measuring very large and she needed more insulin than we felt safe dosing, given the fact she was still vomiting.

The Dr. graciously called the ER and explained the situation so we could show up and be sent back right away.  The ER nurse and Dr. on duty were familiar with T1D in children and were extremely accommodating to my needs to still pancreate.

An IV was placed (after a failed one) and Ellie received a bag of fluids along with a dose of Zofran, (anti-nausea drug) while the lab tested blood work to check for enzyme stability and presence of DKA.

Within 15 minutes Ellie's color returned to her face and she perked up with conversation.  At one point, she looked over at me and said, "Mom, I am glad we came here".  Yep, baby, so am I.

The labs came back clear for DKA and her enzymes were still behaving.  Ellie drank 4oz. of apple juice in order to fend off a low blood sugar and we waited to see if it would come back up.

The juice stayed down and Ellie continued to improve, so the Dr. on duty called the endo. and we were given the option to be admitted if we wanted.  Or, she said Ellie should continue to improve and so we could go home to rest and recover.

We went home and were tucked neatly in bed (yes, I DID have her sleep with me) by 3am, with order to check numbers every 2 hours.

By mid-morning the events from the previous 24 hours were becoming a memory and Ellie was resting comfortably. I took a nap and watched a movie and basically tried to forget all about what just happened.

And we lived happily ever after, the end.

Until next time.

I did learn one very important lesson, however, . . . .

I am no longer afraid of the red box.  I learned it is simply another tool in the box of supplies we use to care for Ellie's T1D. 

I can fear the 'situation' in which we need to use the contents of the red box, but not fear the box itself. 

Opening it does not mean Ellie is in danger, it means we have a tool to use to get her OUT of a dangerous situation.

Someday, somehow, someone will discover a cure for T1D . . . and for THAT I will sing my praises of gratefulness from the rooftops.

Until then, I will continue to carry the red box . . . . but now without fear.


Diapeepees said...

What a difficult time. Glucagon is so psychologically difficult for all of us...hard to think of it the way we should, as a tool. Hard to make that decision to go to the hospital, too, but I'm glad your brain worked well through the process...and I know God (and the dr!) gave you some good guidance. Hope things are more relaxed now...Amy

Heidi / D-Tales said...

What an ordeal! Sometimes, I wonder if our fear of glucagon stems from the way it's presented to us when our kids are first diagnosed. Docs, nurses, CDEs, pharmacists and techs should all really talk about it the way you did at the end of your post. I think that would make a huge difference for so many of us. Regardless, I hope you don't have to use it again for a good, long time!!!

Joanne said...

So, so scary. While I am glad we have that little red box, I hope we never have to use it.

Glad all is well now!

Nikki of Our Diabetic Warrior said...

Thank goodness for Glucagon and Zofran! I LOVE how you explained the Glucagon as a tool. I need to always remember that. I pray that God brings quick healing for Ellie and that it doesn't pass through the family. God Bless!

Carma said...

Even knowing the end of the story (and giving a hug to Miss Ellie yesterday), I still got teary.
Brave Mom & Dad and brave Ellie. And brave rest of the family for being there. (and probaby trying to figure out what was the best way to help)

I do have to comment on the pharm tech early in the red box story. I have to feel sorry for that person. Showing a person the red box is one thing, but to suddenly realize that this person has no clue what you are showing them. And they are getting upset. Eep. There is no graceful way out of that one.

Interestingly as long as I hung out with my college buddy who had D1, I never heard/saw anything about a red box like that. (Though I did carry some stuff with me in case of emergency)

Shannon@ The New Normal Life said...

The first time we had to use it, I also was SOOO scared. ours was on our 1 year anniversary. Since then I have had to use it on my husband as well. Thank Goodness not during a "true" emergancy but one were, I could do a mini dose and take it with thoughts like yours. It is impowering knowing we have that in our bag of tools should we need it. THANK YOU for sharing your brave story!

Denise aka Mom of Bean said...

...so I read this on my phone, but hate trying to comment from it...then I forgot to come back when I was at home...blah, blah, blah

so glad Ellie is feeling better

so glad you 'got over' your fear of the read box

love that you are sharing your experience so those of us still yet to have to crack open that vial and syringe can be a bit calmer about it when and if the time comes!!