Sunday, March 13, 2011

In Which Connor Is Headed Back To The Hospital

Connor had five seizures today: including one a couple of hours after he'd been given Ativan.  We ended up using the Diastat during the last one, which was a scary five minutes long.  At least only one of those five seizures was apneic today-- yesterday it was three out of the four. 

Since it was obvious by now that Connor's seizures were completely out of control and on weekends the nurse triage line is shut down and I wouldn't be able to expect an answer until Monday, I called the Children's hospital and had them page the neurologist on-call directly.  I only use this as a very last we're-out-of-options resort because technically you're really not supposed to do it unless you're medical personnel calling from another hospital to discuss a patient's care.  But I'd had a couple of the neurologists give me their blessing in the past on this sort of thing, and I figured I'd try my luck and see if one that already knows Connor was on staff tonight.  By now the list of neurologists up there he hasn't had at least some contact with during a hospital stay is getting to be really, really short.

Yes, I have figured out how to convince the operator to actually bend the rules and page the neurologist for me.  I have my ways.  Let's just say that I am normally an extremely nice person (and I start out my conversations with the operator in Nice Mom mode) but I can be completely, totally ruthless when it comes to getting what my son needs if that doesn't work out. 

Thankfully I didn't have to go past the initial friendly request this time-- the operator was really nice and connected me without a fuss.  I've found that it really depends on which operator you get as far as how much pushing you end up having to do.  Some are more sticklers for the rules than others.

Anyway, so I got a call back about ten minutes later, and I was in luck.  Turns out the fantastic neurologist who initially managed Connor's care the last time he was up there was the person on call, and she knew immediately who the little guy was and why I was probably calling.  She's now attempting to get an appointment with the epileptologist tomorrow rather than in mid-April, which is when it is currently scheduled.  She'll speak with the epileptologist personally and make sure they have Connor's background information and history. 

We're hoping that the little guy-- who is now sedated to the gills on Diastat-- will remain seizure free until then.  Diastat usually stays in the body for about two days, so with any luck that will give us a window of time to work with and hash out a game plan.  If we do get in I'm not sure yet whether or not he'll be admitted once he gets there-- they may want to see what a typical seizure for him looks like so they can treat him more effectively-- but I'll let you know whether or not we end up downtown for an extended period of time again.  Please keep us in your thoughts and prayers over the next few days-- we sure could use them.

I really hope we'll get this figured out. 

~Jess

8 comments:

Julia said...

I'm soooo sorry to hear it -- although good news that you were able to get in for tomorrow. Good luck; you'll be in my thoughts.

krlr said...

Oh... Good thoughts. And prayers.

Mary said...

Bleargh. I'm sorry to hear that Jess. Wish I had phone service to talk with ya'. My love to all of you.

Julia O'C said...

Prayers for you and your family, Jess. I hate that this is happening.

rouchi said...

Thought s and prayers your way.May you move from strength to strength.

Edit said...

sending all three of you positive thoughts. i hope all this gets figured out soon!

ali said...

Thoughts and prayers from NYC -

Elsie Hickey Wilson said...

Dear Jess,
I came over to read your blog at the suggestion of Julia Wilson, my dau.
So sorry to hear of Connor's setback and the difficult times.
I am so glad you could get the appointment and hope he get's the help he needs.
Know you and Connor are in our thoughts and prayers.
Julia's MOM,
Elsie

 
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