Operation #12 MidFace 8/4/16

Well, we have been waiting for this day since Jake was born and like it or not we are finally here.   Jake will start his mid face procedures as part of his expected surgical protocol.  The operation will be a box osteotomy with some bone grafting.  In simpler terms, They are correcting, realigning and moving Jake's eye sockets and eyes to elevate function, protection and correct the malformation.  Jake will permanently have titanium plates that will hold his eyes sockets in proper position forever.

After numerous appointments and discussions with Jake's doctor, Mark Urata, the surgeon felt it was most wise based on Jake's individual condition to break the mid face procedure into two parts.  The first stage being the eyes and upper face leaving the jawline and bottom part of his face to do in another step.  This should reduce risk from the original procedures of a Lefort III.

Jake will be intubated probably from Thursday to Monday and his eyes sewn shut to prevent against damages to the eye where immense swelling could pop his eyes out if left alone.   Jake will be asleep and shouldn't remember any of this according to the doctor.   Expected Time in the hospital will depend on the surgery and Jake's personal healing but we think between 6-15 days at CHLA.

The surgery should be a very long day and could go as long as 10-12 hours before we get to see our Jake again.   A very tough long day awaits and of course hard to ignore the wishes to fast forward life a month or so to be on the opposite side of this.


On Friday 8/5 we welcome those of you hustling kindness to wear your shirts and post a message to Facebook tagging  Samantha and Lance as well as #hustlekindness #jakereissjourney #peachsneetfeet.   Those without shirts can also post a message and we will play for Jake during his recovery.

We appreciate you all sending speedy healing vibes to Jake and thinking of us during this time.

Ear Tubes

Jake's current tubes were dislodged so off to the surgical center we go.  Jake is going under for the 11th time for his 4th set of ear tubes.  A smaller procedure for our surgical veteran but we parents are always nervous every time he has to be put under.
Keep Jakey in your thoughts.

Cast Off

Well three weeks flew by and it was time for Jake to see his left hand again.  He was very excited and had a little countdown when he would announce how many days left of the cast.   Once checking in at Childrens Hospital, we headed to the cast room.   We had prepared for distractions and supplied ourselves with IPAD and headphones so that we could distract and drown out the saw noise.   Jake was a trooper and smiled through most of it.   We headed downstairs to wait for Dr. Panossian to remove the small amount of bandages cover the incisions that were hidden by the cast.   Jake started to stir and was scared to dip his bandaged hand in water as we coaxed him to do so.   We tried to explain that making it wet would help the removal.   Jake smiled through most of it with some apprehension and grew very nervous when he saw the pin sticking out of his thumb.   We all attempted to distract him while Dr. Panossian was slowly turning and removing the pin from Jake's thumb.   Jake's left hand wasn't the prettiest sight to see, as it has stiches, scabbing and dry skin left over from the procedure.  The left thumb was very swollen but we could see the improvement made in the web spacing between the thumb and forefinger.  

We headed upstairs to the OT room so we could have a splint made for Jake's thumb that he is to wear at night.   Jake was still favoring his arm as if the cast was still on and was very nervous about the splint fitting.   We got through the process with some issues and left with a couple of splints to use.  

Fast forward to nighttime and Jake had some fear and anxiety issues.  The bath started some major issues and when it was time to put on the splint, it only grew worse.  We tried to transition Jake into the process giving him countdown warnings but he kept refusing to allow us to apply the splint.   Sam was very apprehensive to try anything in fear of hurting him which is understandable whereas I thought we might have to force the issue a bit as he was never going to want to let us put the splint on.   An hour later, we decided to let him have the night without it and will try again tonight.  Tonight we will have to convince him to let us put the splint on so it will protect his hand from injury as well as keep the scar tissue from counteracting the surgical improvements.  Hopefully an extra day will alleviate some of Jake's anxiety to the point where we can apply the splint.

Smooth Sailing

Just a quick note today, Jake is off his major pain meds and is down to taking just ibuprofen.  He is all smiles and back to himself.  Such a pleasure to watch how he responds to his adversity with a smile.  One quick item I forgot to mention the other day.   So we are sitting at home and Jake turns to us and says you know yesterday wasn't so much fun.   We could do anything but smile and agree.  love this boy.

Happy Halloween

Jake slept through the night without issue beyond just kicking mom and dad but we'll gladly trade that for the little man getting some rest.   Jake had been doing well and seemed to be happy with the notion of staying home from school and not having to do homework.   At least in his little mind, there are some valuable trade-offs.  Smartly, he has learned to negotiate and rather convince us why a powdered donut is the food he needs prior to taking his medication.  Who are we to argue?  Some intermittent bouts of pain and soon it came time to remove his CBloc.  The CBloc is a pain medication device that administers directly into his nerves in the shoulder via a catheter.  Till now Jake has been walking around with tubing and wires inside his shoulder area running down into a small black bag.  Like a true champ, Jake flinched more about the medical tape being removed than my pulling out the 4 inch catheter.   Jake then had a nice visit with his godmom playing with toys and reading a book topped off by a surprise smoothie.   By later the afternoon Jake was feeling better and decide he did want to partake in Halloween.  He chose a perfect costume, a vet which came complete with surgical cap and scrubs.  Picture featured below.   We did attend the kids annual Halloween party and Jake did some trick or treating to cap off the net.   Feels like the tough road is beyond us and we are seeing way more smiles than pain incidents.  Jake will return to school on Monday and then get his cast off on 11/20.   Let's hope that baby blue stays on his wrist till then so we don't have any urgent needs to run to CHLA prior.