Friday, September 13, 2013

here we go again....

A-lot has happened since we last blogged....May rolled around. It was time for Lily's Eye muscle surgery.  That was an easy one.  Lily's eyes were crossed, she looked at us though one eye at a time, but never both. I was so anxious to have this surgery done.  One I actually looked forward to.  The surgery came and went.  Lily's eyes were straightened out, but not to the degree I had hoped.  I still thought they looked crossed.  I admit I was disappointed.  I just had really high hopes.  You would think I would learn my lesson.  I know better than to have any expectations.  I don't mean this in a negative way.  I just mean...there is really no way to know the outcome of any of these things. Lily has by all accounts the best Pediatric Ophthalmologist in the Intermountain west. And yes, he did warn me that she may need a second surgery.
June rolled around and Lily continued with a very slow progression post-surgery, but we still had some major concerns.  We just felt in our hearts that something wasn't right.  Since Lily's Chiari decompression surgery back in January, we hoped for some improvement in her upper extremity strength among other small things. The Neurosurgery team was very concerned about Lily's "breathing episodes" (where she stops breathing when upset, passes out, loses her respiratory drive, and needs to be resuscitated with rescue breaths). After more deliberation, our Neurosurgeon felt it would be best to do another Chiari decompression surgery.  They had tried to be very conservative with the first surgery, and now felt a more extensive surgery was needed. I received the call on a Thursday, the surgery would be scheduled for the following Tuesday.  They wanted to get it done quickly since we had plans to move our family to Oregon.  This was 3 weeks before the semester started and Corbin HAD to be in Oregon, with or without our family.

Tuesday morning.  We showed up at Primary Children's Hospital.  Baby in arms.  Unwilling to let her go for the 5th time since her birth.  Knowing the risks of the procedure.  With our hearts aching, sending prayer upon prayer to God to please please get her though this okay.  Please let this be the right decision, please let her benefit, please give us the strength we need to let go of our little one as we hand her off to a team of anesthesiologists, nurses, and surgeons.

Same day surgery....I know you....all to well.  As we sat in the waiting room with all the other parents with the same "deer in the headlights" look.  I glanced over to see the evil nurse.  You remember her from our last surgery.  When it was my turn to check in, I made sure to request that she NOT be our nurse.  They were kind enough to accommodate us. I'm sorry if you were one of the other patients that day, and got stuck with the mean nurse practitioner. I honestly don't know how she has a job at a children's hospital.  We made it genius of a husband requested that when they took her blood, that they also get a line in (this ended up being the only working line in the end). Lily is very very difficult to get an IV in.  We had nightmares from her eye surgery.  When she got out, we counted no less than 15 unsuccessful pokes in her hands, arms, legs and feet.  They ended up using her Jugular vein!  That's on your neck folks!  She hated it.  It was sad and painful.  Sadly, when we were called back to see Lily after the decompression a couple hours later.  We saw that they also had her line in her Jugular.

The surgery itself went well.  They "decompressed" all the way down to her 6th cervical vertebra. She was in a lot of pain post-surgery.  They kept her pretty well medicated.  Unfortunately the narcotics they were using to manage her pain were causing her have problems breathing.  Lily looked very pale and was having problems breathing.  After one night in the neuro-trauma unit.  We were moved to PICU.  They were able to figure out the right cocktail of medications to keep her pain under control and also keep her breathing and by the end of the next day we were back in neuro-trauma.  Lily continued to improve and finally on Friday we were able to take her home with us.  Although she remained in a lot of pain we were happy to get her home.

It will be several months before we will know if the surgery actually did help.  However, we noticed that when she opened her eyes, they were straighter.  Perhaps even straight enough she will not need another eye surgery.

The back of Lily's head and neck
Lily's room on Neuro Trauma 

Lily and Daddy's hands