Ex. Fix. surgery and "the dance" - March 18, 2015

Different hospital, different gown, different surgery...... same waiting game

On Wednesday, March 18th we were scheduled to check in with Lucy at Shriner Hospital for Children at 9:00 a.m.  Surgery was tentatively scheduled for 11 a.m.   After answering the same series of questions at about three different stations (no we have not been out of the country in the past 3 weeks, no she has not been sick, no she does not have a latex allergy, etc.) Lucy was given her "happy juice" (aka versed) and headed for the operating room as scheduled at 11 a.m.

pre-surgery pics with daddy bear

The surgery took just over four hours and at 3:30 we met Dr. vanBosse in the parents waiting room on the 7th floor.  He reported that the surgery went very well, the ilizarov (external fixator) was  constructed (much like an erector set!) and put on Lucy' leg from thigh to foot.  He also put a wire through the bottom of her foot to maintain the corrected talus position.

The anesthesiologist also came out to chat with us after surgery (a first in her four surgeries).  She explained to us that while in surgery she tried several times to put in a spinal epidural (that was pre-planned for pain control).  However, because of the scar tissue from her April 2014 spinal cord surgery she was unable to put in the epidural, meaning scar tissue prevented this procedure.    This news meant that pain could be trickier to control and controlling pain after an invasive surgery such as this is a key component in her journey to healing and recovery.  A pediatric doctor with over thirty years experience in pediatric pain management was the doctor working in the PICU this week!  God is good.
Unlike the other surgeries, we did not see our girl in recovery (?) instead we met her in her pediatric intensive care room.  The nurse and doctor both let me know that she was asking for her Mama (that statement was met with very mixed emotions- of course elated she wanted me and was looking for me but also a bit agitated//upset that I wasn't beside her when she woke) and Lucy told them she was scared!  I did obsess on those comments a bit and my dear friend who spent the waiting time during surgery with us told me that most likely she won't have memory of it.  I resigned to hoping that she was speaking truth.

Ahhh a cool wash cloth

Lucy sweats. A lot.  No footed blanket sleeper pj's for this girl - she sleeps in a tank top and shorts all.winter.long.  I've become accustomed to her off kilter thermostat but was still a bit shocked to hear from the nurse that she "sweated out" both of her IV sites?!  Wha??  Apparently she was wringing wet with sweat and both IV sites dislodged!  So.... our brave warrior had to have a new IV site put in after surgery.  I think most likely this was part of the reason she was scared.

recovery starts in PICU

Prayers and words of encouragement from "Aunt A. & Uncle D."

We didn't see much of Lucy's eyes until about 11 p.m.  She was getting morphine every few hours along with other big gun meds like Valium, and oxycodeine. This is when we begin the  DANCE!   Figuring out the steps -- how much, how often, dealing with angry and easily triggered emotions from a little 38 pound body pumped full of potent chemicals   Throw in lactulose to keep bowels moving (which then  ended up causing severe abdominal pain and run away bowel issues ) and you see why the metaphorical dance steps can become tricky!  We're grateful for a PICU doctor with lots of experience in helping with the choreography of this dance!
Depending what time you may have checked in with us would have determined  the answer to "how we're doing". Truth be told, I really dislike this part of the journey.  It's hard.  There's a lot of pain.  A lot of raw emotions (from patient and caregivers) and little sleep.  After Lucy's spinal surgery we did a similar dance and  we were quickly reminded that what things look like at the moment may not be what things will look like in a few hours.  Thus the road of recovery and healing after invasive surgeries.