The Crash of 2013

I've spent the past few days trying to figure out how to write this post. On one hand what we experienced was a definite learning experience complete with finally mixing, shaking, pulling up the emergency shot that I've been holding onto for 3 years. On the other hand, I can't help but think of how easily it could have gone awfully wrong. And of course, there's mommy-guilt. I am the worst at Mommy guilt and in the back of my mind I know that I couldn't have foreseen this one, that even listening to what Lily Belle was saying to me couldn't have prepared me for this. 

Let's back up and look at the facts.

Fact 1: Lily had been complaining of stomach aches for weeks. This unfortunately coincides with mega-potty training of the #2 variety. So it was under my assumption that these pains were caused by a stubborn little girl holding her poop and causing constipation. (Mommy guilt moment time out: "I can't help your stomach pains if you don't learn to get your poop out on the potty!" *sigh*)

Until I stepped back and noticed that her "belly pains" were falling very close to her 8hr dosing times. I started noticing the pattern and that morning had put in a call to her endocrinologist about it. "I'm not sure if this is a coincidence or not but could this be sign her cortisol is getting too low?" Almost immediately after getting her hydrocortisone every 8 hours her belly pains would ease themselves. 

Fact 2: More recently LB started complaining of headaches, namely pain in her forehead. This is where my worst mommy guilt is because there is a fine line between listening to your 3 year old daughter and believing what they say is the truth and listening to them and chalking it up to pretend. I could say "does your big toe hurt?" and Lily would dramatically and sadly moan out a weak yes. 

Fact 3: Lily has been on the same hydrocortisone dose for almost a year from what I can remember. Every time we've gone in for a check up with the endo (every 3-4 months) he calculates her weight and how much cortisol is appropriate for that measurement and determines that she is on an average dose. But another fact is, my child is growing and she seems to grow a few inches and pounds every few months this past summer. Another reason I had put that call into the Dr that very morning.

And when I called to let them know about the crash he proudly said, "Sounds like she caught a bug and you were so on top of her symptoms that you avoided a major crash!" 

Can you hear me roll my eyes from here? 

Because the girl was not sick minus the headaches and stomach aches that came almost every 8 hours. She did get a fever suddenly right before we picked her up and that was what made Dr L think it was a bug. But when I look up symptoms of adrenal crisis, lo and behold the top 3 symptoms are "headachaes, abdominal pain and fever." 

So we did go about triple dosing her and upping her regular everyday dose of hydrocortisone even though "she was on the lower end of average for her weight." 

So, on the morning this happened LB was complaining of her forehead pain and stomach pain but I sent her to school anyways. (No mommy guilt over that one.) I got a call from her teacher saying Lily "just isn't herself. She's yawning a lot and says her stomach hurts." I said I would come and pick her up after lunch since it was very close to lunchtime. And then I got another call not 10 minutes later, "We would actually like you to come pick her up. She's really not herself and refuses to walk to the cafeteria." So of course, Den and I rushed to the car - not even thinking to grab her triple dose of oral cortisol and drove like hellions to school. 

And on the way there we got another call "We've got her laying down in the classroom and she now has a fever." My heart dropped because I knew that she was crashing and this was happening so much faster than I thought possible and I'M NOT WITH HER! Worst nightmare.

As Den drove I mixed up the shot fully prepared to give it to her. When we walked into the classroom she was laying down covered in blankets and shivering but offered us a weak smile and a "I don't feel so good mommy and daddy." I immediately, and shakenly, checked her glucose which was at an appropriate 83. 

This, coupled with Den's apprehension with giving the shot, was the reason I hesitated and second guessed myself over giving the emergency solu-cortef. I know next time I will give it without thinking twice. The ride home was scary with her nodding off and her eyes glazing over. I wanted Den to pull over so I could give the shot but he promised we were almost home and could get the oral triple dose into her - we did and she bounced back in about 30 minutes but never again will I hesitate to give that shot. 

And the days afterwards? She was fine. No more fever minus a low grade one that night. But yesterday she was back to her normal self. And today as I dropped her off at school in her new shiny shoes, I hugged her teachers hard and thanked them for loving my daughter like one of their own - for being so on top of symptoms, for calling me right away, for staying with her and singing her the ABC's. I made sure to let them know they were the reasons she is not in the hospital or worse, because they acted so quickly during a very fast crash that she was able to come back to school today. 

Happy and healthy

And seeing that sweet face and that happy smile it is hard to remember that this little girl is so medically fragile. We have been so lucky not to have faced a major crash yet. Seeing the symptoms yesterday I know we have had minor crashes, ones that I have caught early on and saved with triple doses of cortisol. I know I am vigilant but it doesn't stop me from worrying about being complacent again. It worries me that I didn't listen. And it was a definite wake up call that she is not "normal" and that I should always keep that in the back of my mind. 

This is what keeps my daughter's body going everyday. This is the medications she takes every.single.day for the rest of her life to keep her alive and healthy. (Pictured: Levothyroxine, desmopressin, hydrocortisone, somatropin(hgh) )