Sunday, June 6, 2010

Waiting 9 to 5 . . . what a way to make a living . . .

Our first official night in our new house wasn't in our new house at all.  It was in the ER of Sick Kids hospital.

After a long day, the moving trucks had just pulled away and we were working quickly to set up beds for the kids.  I was working on Autumn's room while Jeff set up Gavin's crib (yes, he is still in his crib . . . he can't easily get on or off a bed, we fear he may fall out and he hasn't complained yet).  Jeff just finished up and ran outside to move our cars off the street.  Within 30 seconds of him leaving, Gavin shrieked out in pain.  The kind of cry that makes you run.

He had crawled under the crib - something that had never been an option because a drawer usually occupied that space.  And, he got stuck and scraped all along his back - right down his spine - as he was trying to escape.  When I picked him up, a humongous, hard lump had formed right at the spot of his defect.  Huge.  Gruesome.

This is the exact spot where spinal fluid leaked through his healing incision when he was three weeks old - resulting in a rush to Primary Children's and immediate surgery to place a VP shunt in his brain.  This is also the spot where spinal fluid leaked again - even after the shunt was placed.  So, it was a big deal.

Typically Jeff and I both have to take a moment and try to assess the situation as calmly as possible - to try to understand whether we are overreacting or not.  Right from the start, all of the symptoms of a shunt malfunction, for example, are all of the 'normal' things you'd experience with any baby . . . unusual fussiness, sleepiness, spitting up, etc.  It's a fine line between trying to treat Gavin as 'normal' as possible and not freaking out with any little symptom.

But, this time . . . we both knew.  And, we immediately split up to try to search a house that we had officially lived in for 10 minutes for everything we'd need for a trip to the ER.  

Luckily Autumn had been playing with Alida all day - and they walked in the door at the same moment we were about to walk out.  So, Autumn was able to have that sleepover that she had been begging for.

Here's a brief run-down of our night:

9:05pm   Arrive at Sick Kids ER

9:40pm   Register Gavin's name

10:30pm Meet with the nurse to discuss Gavin's case.  She lets us know that she is very concerned and is placing us at top priority in her queue.  She also warns us that several other patients are ranked at top priority in the waiting room and that estimated wait times for the most urgent cases are 3 to 4 hours.  Other lower priority cases were waiting 6 or 7 hours - just to get a room.

Jeff and I discuss whether we should drive to Buffalo.  We discuss whether we should go home.

I reiterate to the nurse that either the spinal fluid will be reabsorbed on its own and everything will be fine.  Or a disturbance in the flow of the spinal fluid could have been created and pressure could be building, potentially causing permanent brain damage . . . which could not wait 3 or 4 hours.

She was sympathetic - but, explained that there were no rooms available.  And, waiting was the only option.

12:45am  We were called back.  A room became available.  The boys got a little bit of rest.

3:20am    Gavin is finally seen by a doctor.  Luckily - because I was irrational at this point - he was extremely nice.  Unfortunately, he also openly admitted that this was a very unusual case and he was 'giving us good advice but making it up as he goes.'  He leaves to consult with the neurosurgery team.

4:30am   He finally returns.  No tests will be run.  He feels fairly confident that no additional damage has been done to Gavin's spine and that the injury has not caused blood to mix with the spinal fluid - which can also cause brain damage.  And, he schedules us for a follow-up visit with neurosurgery in a few weeks.

5:20am   Arrive back home.

7:20am   Wake up to my alarm to go visit with Autumn before school - and make sure she understands what happened the night before - and take her fresh clothes, backpack and snack.

Gavin's back is recovering.  The swelling went down.  He still complains that his back is sore.

It took us all a few days to recover from the lack of sleep.  I still haven't recovered from how insane the wait times are here.

I'll report back after the follow-up appointment.


  1. WHAT!? I'm so glad he's okay, poor little guy. If you need anything let me know!

  2. Oh my gosh! I can't believe how long it took. How is he doing now? Poor little guy.

  3. Wow! I had no idea. Yikes! Your life never stops, does it?

  4. did I not know this, clearly it's been too long since we've had a "real conversation" Scary, hope he is okay.