Surgery Day

8/4/16, a date etched in our heads for a very long time.

We began very early today as we woke Jake up at 5:15 so he could have a clear gatorade, the last of approved fluids on surgery day.   We reported to Children's Hospital at 6:30 to check in only to be met with an unexpected surprise.  For the first time in all of Jake's procedures, he had to have blood taken on the day of his surgery.  Considering that in his pre-op on Monday, they stuck him multiple times, he was less than enthused.   Luckily, the technician was far superior and Jake was relatively calm.   Then we returned to the surgical waiting room before being brought upstairs to the pre-surgical area.   Routine meetings with the anesthesia team and the nurses where we deliberately reminded them of Jake's allergic reaction to Porcine which is found as an ingredient various items including surgical gel foam to which he had a previous reaction to.

 [Please take note of subsequent foreshadowing.]

Jake was given Verced to calm him down which makes him a bit tipsy, sleepy and almost appears drunk before we took him back to the OR.   The medication really works because there was almost no reaction to the OR before he was fast asleep.   Then the anxious parent waiting game began.

We took our spot in the parent waiting area, and started our anxious day but at least surrounded by some friends and family.   We were informed approx. two hours later at 10:37 that the surgery would begin following all of the necessary set up, anesthesia etc.

Waiting game began with periodic updates that didn't provide much info besides "its going well." After several hours, we received a visit from the neurosurgeon.  His role in the surgery to free up the skull area was complete and the procedure around the eyes, and eye sockets next to the brain could begin.  He was happy with how things went but reminded us that it would be a very long surgery to complete the full procedure.   Back to the waiting game.

Finally, just before 5pm we jumped to our feet as Jake's craniofacial surgeon, Dr. Urata walked into our waiting lounge.   The Dr. reviewed with us all of what was accomplished in the surgery.
Dr. Urata declared the surgery a resounding success.

They were able to perform the box osteotomy so imagine a rectangular section being applied to the eye area in an effort to which they then straighten, align and set back eyes in a more normal eye socket that Jake's previous malformation did not allow for.   Jake's eyes were too far apart and the procedure allowed for a gain of approx. 10mm to improve the distance between his eyes.  This was facilitated by removal of bone in between but the masterful surgeon spied an opportunity for more enhancement so he took advantage.  He allowed for greater symmetry in Jake's face by placing some bone taking from his skull and help shape his cheek bones.  Another great positive Dr. Urata was able to accomplish so much that a secondary procedure for his mid face will not need to happen till the teen years.  The only possibility would possibly be some fat inserted into the face to round out places where there are gaps once all of the swelling goes down but that is a very minor procedure if needed.
But anytime, you hear a surgeon say spectacular you have to be thrilled and this surgery went as well as could be expected.   But with every great performances there are often slight hiccups and there was some collateral damage to the surgical results.   Dr. Urata ran into tooth #6, the eye tooth.   Being a craniofacial surgeon requires you to also be a dentist so he had to debate with himself on what the greater loss was in order of importance. Well you may have guessed, the tooth lost the battle so it will be an issue we will deal with as he gets older.   We discussed the expectation for the recovery and here is what we know thus far.   Jake will spend time in the PICU till Monday because he is intubated and his eyes are sewn shut for protective purposes.   Once we remove on Monday, it will be an observation game to see how he manages pain, eats etc. before Jake can go home.   Probably earliest Wednesday of next week.    So Dr. Urata left us feeling great and inspired and we knew we had about an hour left till they closed Jake up and prepared for transport to the PICU.

Finally, we got the call around 6:30 at the approximate 10 hour mark that we could head upstairs.
We walked into Jake's room filled with nurses and doctors and it appeared chaotic.   No matter how many surgeries we have been through, nothing quite compares you for the aftermath of surgery.  Jake looked so swollen and helpless so as a parent your flight mechanism kicks in to keep you from not passing out.   Poor Jake, he looked like he survived a war and the realization that despite how successful the surgery is, recovery is a long long road.   Before we could even grasp what was happening with our sweet boy, a rash starting developing and spread like rapid fire all over Jake's body.   We quickly jumped into action reminding the staff about Jake's previous allergic reaction.  Tough pill to swallow that the poor boy who endured a massive surgery had to now experience a skin rash covering his entire body.   Frustrating as we still don't seem to have the answer to what is the root cause of his rash and allergic reaction.  We reminded everyone about the Porcine allergy but it still seems to be a mystery.   Then, as strange as the onset of the full body rash, before they could give him epinephrine to help the rash started to go away on its own.   Another surgical mystery that we try to figure out so we can avoid in the future.

Jake is now resting peacefully and he will remain basically sleeping till Monday as they have to keep him in that state when he lacks the ability to see or talk.

A very long and eventful day but in the end surgically speaking a huge success so we just need to start the recovery climb.   Thanks to everyone who wrote and checked in and special thanks to our family and friends who joined us here today at CHLA to help us through this tiring day.

One reminder....tomorrow is hustle kindness Friday so take a photo of wearing the hustle kindness t-shirts and post with the hashtag #hustlekindness #jakereissjourney #peachsneetfeet.   Then tag us, Samantha and Lance.  This allows for us to index all posts and share with Jake later.  If you didn't get a shirt or it didn't arrive in time, feel free to post a message with the same tags and hashtags and we can show Jake as well.