Friday, January 08, 2010

Sedation Fail

I took Nina to the neurologist on Tuesday.  She's responding well to the seizure meds, so we're going to keep her on them for another year and reassess then.  Funny how reluctant I was to put her on them at first, but how grateful I am now.  I never want her to seize ever again.

Niko's labs came back and his calcium is high. We went in Wednesday for his sedated MRI/renal ultrasound/blood tests, but after an hour and a half in the hospital, they told us they couldn't sedate him because he had a runny nose and they won't sedate sick kids.  Niko didn't have a cold; his nose was running because he was crying torrentially in terror, but they sent us home anyway and we try again next week.  More waiting.  More dread. Except now Niko is sick and running a fever, and I bet he won't be better by then.  Yes, that's why I'm writing on this blog at four in the morning.  I've been up with him for the last two hours.

I can't tell you how frustrated I was!  I was enraged.  The last time Niko's calcium was high, his kidneys started to fail.  And they won't sedate him because he has a runny nose?  Really?? Don't you think getting a good look at his kidneys and his, oh, I don't know, BRAIN maybe takes precedence? I have never had anybody refuse to sedate because of a runny nose before!  Not ever.  Is this where I mention that we've been trying to get these tests finished since September?

So check-in is Tuesday at 11:00. He can't eat or drink anything beforehand, which breaks my heart.  His actual sedation isn't scheduled until 1:00, so he'll be tired, hungry, and terrified.  I said, "His nose will be running next time, too.  He's going to cry.  Don't think that he'll magically get over this hospital phobia. What will we do the next time this happens?"  They don't know.  Maybe he'll be calm and they can do it. I told Luke that I wanted to line the hospital staff up so that I could knock some sense into them.  He wisely tried not to smile.  He's also taking work off so that he can take Niko to the hospital because I can't handle it again.  I have hit my limit. I've become a human shield, standing up in front of my son and taking the blows from the hospital, from the school, from people at church. This time Luke is standing in front of me.  My husband is truly my hero. 

On a lighter note, my daughter thinks that she's a Disney princess.  Mom gave her a trunk of princess dress-up clothes for Christmas, and she likes to bedeck all of us.  Yesterday I walked in the door to see Luke wearing a tiara and holding a star-shaped magic wand.  Nina was wearing three dresses, one on top of the other, and every piece of plastic jewelery that she owned.  Within minutes I was in a Cinderella headband with my own wand. My kids are fantastic. Whenever I struggle to see the beauty in humanity, they pull something like this out of their hats.  It's hard to feel bitter when Niko is kissing my cheek and Nina puts a giant plastic ring on my finger and then gasps, "Oh, pretty!"

2 comments:

Katie Aldrich said...

I am smiling at the thought of Luke in his tiara:) And I will pray, so so hard, for a non-runny nose for Niko on Tue.

shashank said...

Here is a link to more information about the genetics of Williams Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Williams_Syndrome/395. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA