Carpe Diem

I've never been to the ER before and felt it was a complete waste of time.

Hospitals are not somewhere I like to go.  I avoid them at all costs.  But, Thursday morning Chickadee had what might be called an anxiety attack.  For an hour.  Or, it could be that the "Parkinson's Shake" that can go along with Rett Syndrome is now on Chickadee's symptom list.

Lastly, it could be a seizure.

One of the Rett girl blogs I read had circumstances that sounded a lot like my Chickadee's.  She had been started on seizure meds after an illness, and her parents wanted to make sure that is was seizures, as the meds had been prescribed without capturing the seizure for clinical diagnosis.

Seizure medications, while life and brain saving, can be devastating with their side-effects.  Chickadee used to be on Dopamax  Topamax following an irregular EEG.  Then Dr.  Khwaja  pointed out that most Rett children have an abnormal EEG by the time they are 4-6.  The key is to make sure they are seizing.  We hesitantly eased Chickadee off the med and she came back to life.  Turns out, she wasn't having seizures yet, and we prove it with 24 hour video EEG's every 6 months or so.

So, while avoiding brain damage is paramount I am now placing a high priority on avoiding a doped up daughter unnecessarily.  Because the difference is dramatic.

But. Chickadee has been sick.  Really really, "if this doesn't work I'm taking her to the ER" sick.  High fever, loaded with mucus, feedings being viewed in reverse action almost every time.  {as an aside, my washing machine broke and Mr. Survival is fixing it in lieu of therapy}  I am scared.  But, she always pulled out of it.  She was always fine.  Just fine enough, kind of like meeting her first year milestones.

So, it was kind of ironic when her primary care doctor['s nurse] added up the symptoms and said it sounded kind of like pneumonia.  With the blue lips, and the high fever.  She said they don't have an x-ray, and we'd have to go to the ER.  I just about rolled my eyes.  Now that I wasn't worried and pretty sure she was better?  Perfect.  Let's go to the ER.  I felt pretty dumb actually.  Aspiration pneumonia has been haunting me for a while, and it never even crossed my mind!

But no.

One catheter, a vial of blood, a nose swab {which somehow also includes saline drops and a wall mounted central vac}, and two freezing cold and painfully hard x-ray films later lead to . . .

zip.

It feels like a colossal waste of time.

It's not though.  It's not.  I know that the neurologist, developmental pediatrician, and primary care physician are ALL going to want to rule those things out.

Before we start ruling seizures in.

*photo credit



**stay tuned as there have been updates since this was left idling on the Survival computer Friday at midnight and we took off to care for Chickadee...