Post-Op Day 3

Jake is starting to show his strength and what a fighter he is.  As you can imagine, he is exhibiting the signs that he is sick and tired of the tube in his throat and is starting to fight more against it.  In the early am, we were informed that Jake was meeting all of his feeding and water goals through his feeding tube but that didn't last very long.   Jake appears to be dealing with a lot more fluid and is struggling to cough and battle it while intubated.   This morning's monumental session saw Jake fight vigorously in his bed before relieving himself of his entire stomach's contents.   After being cleaned and relaxed, Jake resumed his deep slumber with some help of his drug cocktail mixed with pain and anxiety relief.  

During morning rounds, we discussed his escalated agitation with the breathing tube as well as his vomiting.    The plan was set to remove his feeding regimen since after midnight Jake was going to have to switch back IV anyway to prepare for Monday's extubation.  

The PICU doctors also ordered lasik to dry Jake's body of massive fluids as another preparatory maneuver.  It appeared that Jake outside of the increased agitation and vomiting would still be on track to remove the breathing tube and eye sutures Monday.   

When the Plastic Surgery team rounded, we discussed their point of view on Jake's condition.  They removed Jake's bandage around his head that was covering his incision site which they had reopened his zig-zag scar from his previous head surgery which travels from ear to ear.    The incision site looks great and they were quite pleased with how everything looked.  

Jake continued to struggle with his breathing tube throughout the day and the build up of congestion in his throat and stomach.  It appears its a sign that he is ready for the next step in his recovery.   Making strides towards that as they removed his catheter and Jake has now reached the target for body fluid level.   Essentially he is drying out as they need him to.   

His appearance looks better today and we think he is draining and appearing less swollen.   

Tonight, Jakey appeared to be more aware and was battling hard with his tube trying to roll out of his bed and throw his head up.   Took a while to calm him down and the resident ordered a slight increase in his medicine.   Jake has finally surrendered to the increased dose and hopefully can rest before the big day tomorrow.

Post-Op Day 2

Last night brought an interesting turn of events.  Around 10:30 pm, Jake appeared to emerge from his sedated state and attempted to sit up.  This sent the nurse and mom into a full sprint to his bedside to calm him down and administer more medicine.  The doctors do not want Jake emerging from his slumber nor moving around so this was a bit alarming.  Before long, Jake was back to sleeping soundly.   

The weekends change things at the hospital and it was certainly evident, as the rounds seemed to begin much later.  Neurosurgery popped by for a split second and then it was Plastics turn. We discussed with the team Jake's recent activity along with some bleeding but were assured everything looked normal and Jake was doing well. They reminded us about the swelling and did indicate we would have to evaluate his eye swelling before they will release the eye sutures.  

Jake did give us some surprises today.  After grimacing and turning to his side, we gave him some more pain medication.  Then the fun started. Jake decided to resist all of his pain medication and started to lift his head up, tried to sit up and thrashed a bit in his bed.   Of course, he timed it perfectly while his nurse was on break.   We helped calm him down and spoke to him to get him to stop the urge to sit up.   Now remember, none of his doctors want him in an awake state while he is intubated and his eyes are sewn shut.  After we whispered to him and held his arms and touched his face we were able to relax Jake but we definitely think he heard us and was in a more lucid state.  After they authorized a larger dose of pain meds, Jake resumed his peaceful sleep.  It was a little unsettling because his movement causes bleeding and then Jake actually was making choking noises and vomited.  This was scary because he has the tube in and so the nurses needed to suction all of that out and clean out his line to prevent aspiration and the fluids creeping into his lungs.   While Jake slept, the nurses had to clean out his line connected to his stomach, which the process makes him cough.  Then, they listen with the stethoscope to his stomach to see if he is breathing clear.  We had to repeat this process several times until Jake was relieved and got a clear sign.   

We reviewed all of this activity with the PICU doctors during their rounds and they laid out a plan for greater pain meds if need be and ordered an x-ray to make sure his tube didn't move during all of the activity.  

The swelling has continued throughout the day and all of his features look pumped up with air.  It is hard to process but just when we think he has reached peak swelling he finds a way to get bigger.

The rest of the afternoon, Jake returned to his peaceful sedated sleep and we avoided any other activity.  We did find out that on Monday after extubation in an OR, Jake would come back to the PICU for at least a day to ensure his breathing without the tube is on track.   

After an uneventful afternoon, we did find out that the x-ray showed that the tube had to be repositioned.  Jake was given some more medicine and a paralyzing agent to keep him still while they repositioned his breathing tube.   A frustrating but necessary task and the medicines helped Jake remain still while the Respiratory Therapist and Nurse got the job done.   

Jake is now resting peacefully after being cleaned and repositioned for the night.  Let's hope his physical feats are over for the time being so we can proceed towards Monday.

Post-Op Day 1

Last night was pretty uneventful and in a hospital uneventful is welcomed.  The rash continued to pop up in select spots but the medicine appeared to have gotten it under control.

Mornings in the hospital bring rounds and you begin to see the mini armies of Dr.'s coming to examine your child and ask you how everything is.   The nurse asked us if we wanted to listen to rounds which was helpful to hear the Dr.'s talking to each other and running through the vast list that makes up Jake's care.   We continued to push the unknown cause of the allergy attack to see if we could make any progress to finding out the culprit.  We discussed items with the plastics team, anesthesia teams, PICU teams, neurosurgery teams.  The list goes on and on.

From a medical perspective, there hasn't been much change as Jake is being pumped full of sedatives and pain meds to keep him in a state of slumber while his swelling seems to increase hour by hour.   It is very difficult to describe but you find yourself in awe of what is happening to his head right in front of you.   But in some ways this part is almost easier versus Jake being awake, agitated and letting you know he is in pain.  That will come Monday.

We did learn a couple of things today.  First, the head anesthesiologist let us know that Jake was very stable during the entire surgery, minimal blood loss and couldn't have gone better.   Hearing these comments helps deal with the situation as it will have a positive effect on his healing and well as long term effect.   Additionally, the Plastics team did let us know that they may actually cut the sutures to open Jake's eyes on Sunday versus Monday so that was a possible new item but makes sense that they would want him to see first before they pull the breathing tube so that he isn't completely agitated by both.

Throughout the day, Jake was bleeding a bit through his nose and head but nothing serious more of slight drainage as the swelling is looking for places to escape.

The biggest challenge today was when they needed to move Jake a bit and clean his bed and sheets.   Jake actually kicked out a couple of times and it was the first movement we had seen from him.   Hard to watch wondering if he is in pain but as the nurses put it, very good to see and to know he is in there.  Not good if he is doing it all the time but a couple of times to show he is still in there inside the sleep is a good sign.

Jake had some visitors today but he is laying in bed resting mostly while his head continues to grow to some very swollen proportions.  They say 48 hours is peak swelling after surgery but it is hard for us to imagine how he can get any bigger.

On a positive note, we are blown away by the outpouring of support today for the Hustle Kindness movement and personal dedication this Friday to Jake.  We saw hundreds of posts, photos, videos and most important support for our Jake.  He will be so excited when he is able to watch and view everything.  Thank You all for rallying behind him and we truly think the positive support will yield positive vibes for Jake and his healing needs.

**Special Note for those that didn't know about Hustle Kindness and the charity Peach's Neet Feet, we encourage you to take a few moments and go to the site as you can always order shirts but the charity led by Madison "Peach" Steiner does amazing things for kids facing struggles.  Then, she also started Hustle Kindness as an additional social movement encouraging people to change the world around them by being kind.
More info at www.peachsneetfeet.com

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.

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.