05/17/11

Updates for Surgery Day, Thursday 1/27/05 and the day after surgery, Friday, 1/28.

4:00 AM  The alarm clock sounds and the day begins.

5:30 AM  Depart Shriners Hospital and head for St. Louis Children's Hospital (SLCH)

6:15 AM  Check in at SLCH

7:00 AM  Nick requests, and receives, a dose of Versed (ver-said) which helps to produce sleepiness or drowsiness and to relieve anxiety before surgery or certain procedures.

7:15 AM  Nick is taken back into surgery

8:00 AM - While sitting in the waiting room, my laptop was able to pickup a weak wireless internet signal, thus, I decided to quickly set up this page to keep family and friends updated on Nick's progress.  We've been told that we'll be updated every 1 - 1.5 hours on Nick's progress and I'll update this page as we learn more.  So, as long as I'm able to obtain a strong internet signal I'll keep this page updated.  Please pass along the word to others that I've been able to set up this page so they can keep updated.

8:30 AM - Received phone call from operating room that surgery has started and all is well so far.  Next update should be in a couple of hours.

10:30 AM - Things are going fine, vital signs are stable and team is now starting to place the pedicle screws in Nick's back to be used to hold the metal rod.

12:45 PM - Most of the "hardware" is now in place and surgery is progressing as planned.  I asked if anything had to be attached to Nick's skull and the nurse wasn't sure, but did know that the hardware extended high up into the cervical region and was near the base of his skull.  Also asked if Dr. Lenke had been able to obtain additional correction of the curvature of Nick's spine (he had progressed from 100 degrees to 60 degrees while in traction) and the nurse didn't know.  They were taking lots of x-ray's and making adjustments to the hardware placement.  If progress continues, they anticipate completing surgery around 3:00.

2:15 PM - Placement of the hardware has been completed as well as the posterior fusion.  They're cleaning/irrigating the site and preparing him for closure which is expected to take another hour.  For the posterior fusion bone morphogenetic proteins (BMPs) were used in lieu of harvesting bone from his hip.  This is good because patients who received bone grafts from their own body have two sites that require healing and report that the hip site is much more sore than the spinal site. 

3:30 PM - Surgery is over.  Just spoke to Dr. Lenke.  All went well.  14 screws were placed in his spine and attachment to his skull was not needed.  X-rays show his curvature now at a remarkable 40 degrees which is within normal range!  Contrary to what we heard earlier Dr. Lenke did do some minimal bone harvesting from Nick's hip.  I'll update the site as soon as I can after we see Nick and learn more about what to expect over the next several days.

4:30 PM - We visit Nick in recovery. As expected, his face is puffy from being on his stomach for the surgery, but it's not as bad as expected.  We stay there for only a few minutes as he is then moved to the pediatric intensive care unit (PICU).  Also learned that he was fitted for his vest.

6:00 PM - Settled into his PICU room for the night.  The puffiness in his face is considerably less now.  Affects from anesthesia (sleeping) are helping him rest.  Orders have been placed to slightly roll him onto his left and right sides every 2 hours so he doesn't remain on his back the entire night.

11:00 PM - The evening progresses well with Nick sleeping most of the time except to be awoken to be rolled.  I leave to sleep at YouthBridge and Carole sleeps in the parent lounge area of the hospital.

Thanks to all of you for thinking of Nick.

Friday, 1/28/05

7:00 AM - Arrive at the hospital.  Nick slept well through the night, but is still uncomfortable with the rolling onto his side every couple of hours.  Still, it's best for him.  He's waking up a little more frequently, but still sleeping quite a bit.  Color is good in his face.  Plans for the day are to move out of the PICU today into his regular room for the rest of his stay.  His will also have his vest placed on today.  He got to pick out it's color/design for which he picked a red, white & blue flag design.  Not sure how long I'll be able to keep this page updated for day.  It all depends on when will be moved out of PICU and into his regular room.

11:30 AM - Physical Therapy just left Nick's room.  The physical therapist helped Nick to move his arms and legs with this afternoon's goal to be able to sit up.  If only you could have seen the determination on his face at one point.  He's such a trooper despite knowing the pain that goes along with movement at this point. He's still lying on his back and being moved to his sides every couple of hours, and still sleeping most of the time.    At this point that being able to even sit up right now seems to be quite an ambitious goal, but we'll see how it goes this afternoon.  An Orthotist arrived to try out the fit of Nick's vest.  The vest was a little too long, so he's to return in the afternoon.

4:00 PM - Nick had physical therapy again in the afternoon.  While in physical therapy, the Orthotist returned with Nick's vest.  Click here to see pictures of the vest.  Nick wasn't a very happy camper when the vest was put on and he had to sit up.  He was able to sit up for about 8 minutes.  Needless to say, he hit his PCA (morphine) button and shortly afterwards was back asleep.  At about 5:00 we moved to his regular room on the 10th floor where Nick will remain for the rest of his stay.

9:30 PM - Another day has wound down.  The 10th floor room is nice.  It's actually a semi-private room (for 2 patients); however, Nick will be the only patient in the room for the rest of his stay.  He's still being rolled onto his sides every two hours which he doesn't like, but he's getting a little more used to it.  Time to head to YouthBridge now.  Carole will be spending the night in the room with him.

This site was last updated 05/23/09