Saturday, February 14, 2015

A birthday wish

It's time to turn 39.

Let there be door streamers!


Why are my door streamers on Everly and Anna's door, you ask?

I'll give you three guesses.

It might have to do with the location and quality of my sleeping habits.


Around 11 o'clock, it seemed that all birthday plans would be put on hold. Everly had caught the stomach bug. She started throwing up and when it became clear that it was the real deal, I found someone to watch Anna and started driving towards Children's Mercy.

By the time we got to the emergency room, she was really out of it. They accepted our emergency protocol letter without a problem and we were sent right back to a room. I explained that she needed a D10 glucuse IV and she needed it quick. I was so worried about how she would handle the needle, but she was so lethargic by then, she didn't even care. It was sad.

Even so, they used a j-tip on her...which I thought was amazing. It's a tool that shoots a blast of air and numbing medicine in the spot they are going to insert the IV, so that the child doesn't feel it. Very cool invention! And all the while they are working on her, there is a nurse there talking sweetly to her and blowing bubbles. I was very grateful to them for the way they help these sick little kids.


We spent the next 8 hours sitting in this ER room,  reading our supply of books


Watching Frozen on repeat,


And sleeping.


They gave her a dose of Zofran and a box of bandaids to play with. Nurses get little kids.



As the day wore on, I was wondering what was going to be done with us. Would they admit us or let us go home? What if she started throwing up when the Zofran wore off? Then we'd need to come back and start over with a new IV. It seemed that no one could answer these questions. The reality of the situation was becoming clearer. MCADD just isn't something they are used to dealing with and they didn't know what to do. They were looking to me to make the decision.

That just blew my mind.

But in the end, I knew that I probably did have a better handle on what she needed than they did, so I told them to give her another dose of Zofran. It lasts for about 8 hours. Most stomach bugs run their course with 16 to 24 hours, so if we were lucky, the medicine would wear off right about the time her tummy would be settling down. They discharged us and we headed home.

I researched and spoke to the geneticist on call to determine how many calories she needed to keep down per hour to keep her body functioning. It was my mission that night to wake her up and make sure she got those calories in her. She hated that. She had had such a long day and all she wanted was to sleep. I wanted to sleep too.. but we needed to get her through the night.

What a birthday, huh?

I tell you what....the best birthday present in the world was the sight of that little girl smiling and drinking on her own the next day. That's all I need.


Well, and my Marachino Cherry cake, of course.


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