Jake Update

Well, tomorrow marks two weeks since we checked out of CHLA so we thought it was a good time to catch everyone up.  Jake had been doing great during his first week home getting better each day but then things got interesting.  On Monday the 22nd, it was time to change his clonidine patch.  By mid-day, Jake was feeling lethargic, lacking energy, and complaining of knee pain.  We contacted his doctor and it was back to CHLA to check him out.  It was very confusing to us as Jake had been doing so great so immediately the patch came to mind.  We discussed with the doctors and they wanted to monitor him as his heart rate had dipped to an extremely low rate.  The patch was removed immediately and before we knew it they had to check Jake back into the hospital to keep him monitored and wait out the half life of the medicine that had circulated through his body already.   UGH, it was seemingly a known factor that the patch had caused this sudden change in Jake but we had to make sure.  We spend all night in the hospital but then Jake's heart rate increased back to normal and we discharged once again Tuesday morning.  Coincidentally, Tuesday also marked the day Jake had his first post-op checkup with his surgeon.  Good news, Jake was back to acting like himself again so it was clear the patch had an adverse affect on him leaving us with no other worries about his condition.  

Dr. Urata was extremely pleased with Jake's level of swelling, wound healing and how Jake looked overall.  I could tell he was examining Jake but with an admiration towards the results achieved by the surgery.   We did review the concern about Jake's eye muscle and the doctor did acknowledge that when moving the eyes some muscles could be attached to the socket so there could be a chance something was disrupted.  He did remind us that we won't even truly tell Jake's new look for 6 months as that will be the point where there will be no more swelling. At that point, we can reassess and see the status of his eye.  Beyond the one concern, Jake looks and feels great and it is a huge relief to put the worst behind us and move toward full recovery with each day.   It does appear the surgery was such a success that Jake won't need another major surgery perhaps till he's 19.  What a relief, heading into the surgery we thought maybe next year so we will gladly take a 10 year breather.  If an eye muscle surgery is needed, it is much more minor and an outpatient item.   So for everything we have been through that almost doesn't count.  

We have a follow up for end of Sept. but Jake has been doing great and it feels great to watch him get stronger with each passing day.  

Home Sweet Home

Nothing better than check-out day and not a lot to say today except that we are so happy to be home.   The whole family reunited again just in time for school starting tomorrow for Olivia and Luke.  Jake gets some much needed time off and rest.  Siblings happy, parents happy, dogs happy. Jake happy.
He ate a bunch today so his appetite is improving which is a great sign and encouraging for the healing process.

Just when we thought we might catch up on a little sleep, we remembered that Jake is still on an every 4 hour medicine intake so unfortunately we have a 12:30 and 4:30 am wake up.  But it sure beats the hospital so we will take it.

We probably will trim the daily updates unless anything significant happens and will certainly update the blog after his first post-op check up on 8/23.

We want to thank everyone again who have reached out and supported Jake and our family.  It helped us get through this and we couldn't have done it without you.  Jake has seen so many of your posts, photos, notes and he is quick to flash his infectious smile.

Post-Op Day 10

Today was pretty uneventful as Jake has continued to get better and has exhibited this in a variety of ways.  Starting to eat more, no issue with lower doses of meds and awake all day versus being conked out.  We had a decent amount of visitors today and little Jake had three milkshakes throughout the day.  It is a pleasure to watch him eat more and we need to fatten him up as Jake who couldn't afford to lose any weight to begin with is looking a little thin.  

We are scheduled to discharge tomorrow after we get final clearance from pain management team and the subsequent approval from plastics.  We are all very excited to leave this place but extremely thankful to all of the nurses and doctors who have taken great care of our boy.  Jake is smiling making jokes and it is so amazing to marvel at the healing process and how the kids really do recover so quickly.  

Looking forward we will have subsequent follow ups but we already got approval for swimming in another week's time.    One item we are going to monitor is Jake's left eye.  It has appeared to cross at times and it could very well be a function of the swelling but only time will tell.  Jake once had a strabismus surgery to center the eyes and there was always a chance this surgery could affect it.  

We do want to officially announce that Jake is retiring from his professional sports career as he has to stay clear of any physical contact sports.  Skiing is still up for discussion but we will have to revisit with the doctors in a couple months on the long term prospects.  

Post-Op Day 9 (The Photo says it all!)

Jake's trend is really surging upward and his spirits are high and his recovery appears to get better each day.  Early morning we met with the plastics team and from their perspective Jake is cleared to go home.  We did learn one new item in regards to Jake's eyes. Due to the new geography of Jake's eyes, his central vision point has changed so it will require Jake to redo his glasses and vision prescription.  This does help answer why Jake was asking for his glasses but then immediately wanting to take them off.  One new issue is waiting for probably a month for swelling to go down so that we can ensure he has the correct prescription going forward.

Then the pain management team dropped by and unfortunately the meds are the challenge we have to overcome to be released.  We did review the options but to properly wean Jake off all of his heavy duty meds and ensure no withdrawal from them, we have to give it till Monday before we can discharge. We are on a cut down schedule and even when we leave we will continue with the pain medicine protocol till the following Monday which will then mark the day Jake is no longer on any pain medicine.  We had hoped to be able to discharge over the weekend but we would rather know Jake is more likely to succeed at home then discharge too early and have a new issue pop up.

Jake as been in great spirits and he had a really nice visit with Luke and Olivia.  We spent time in the playroom where they played the Wii, painted pictures and played with toys.  Then, we even brought Jake downstairs to hang outside for a short while. The rest of the day was filled with Jake fans swinging by.

Jake is starting to eat more and he is showing all signs of resuming regular activities like the going to the bathroom.  Now, it's just a countdown to release as long as no new medicine issues pop up.

Jake was quite pleased the Dodgers won today and he kept asking me to check the scores as well as he enjoyed watching the Olympics.  The upward swing is such a nice place to be so much so that we can tolerate the discharge delay without getting too down.

Post-Op Day 8

Jake did very well over the night waking up a couple of times but no real issues to report.

Normal routine as far as the doctors swinging by to check Jake out.  The plastic surgeons did indicate that most of the pain generally comes from the incision and after a week that should be behind him.  We did review a couple of items which resulted in a pain management team and Opthamalogy to swing by for follow-ups.
Jake did start to eat some more today taking in a strawberry/banana smoothie, a blueberry muffin but also had a slight bout of nausea.  Jake is receiving Zofran to help with this and he went the rest of the day without incident.
The pain management team dropped by and we did want to let them know in the past we have had some challenges managing Jake's pain.  They seemed to be concerned with the overall amount and levels of medication Jake has been taking and they are monitored a transitional wean process for him.  We are fine with caution except that it could take various stages which would delay being discharged from the hospital.  Their main concern is that the dosages might be too high if he is spending a lot of time during the day sleeping.

Jake has been in very pleasant spirits so it does appear the agitation was the result of the steroids he was taken versus surgery or pain.  Jake did go to physical therapy today which had him playing with balls, catching balls, shooting hoops into a small basket, kicking a soccer ball and placing magnet shapes into their designated slots on a white board.  At the end, Jake was allowed to get into a specialty bicycle and he cruised down the hallways of the hospital a bit.   Jake is still a little wobbly on his feet so he does need some support but overall he is looking great and we were quite impressed with what he was able to do today.

Then it was bath time, Jake was able to take a real bath and we were able to eliminate some tape marks and other annoyances left from the past week in the hospital.   Cleaned up and back in some pajamas, Jake was greeted by ophthalmology.   They reviewed Jake's vision and tested his nerves and don't feel that there was anything to be concerned about.  Jake had complained about his eyes from time to time but with so much swelling its hard to pinpoint what could be the cause.  It was a relief to hear the doctor say that he doesn't have any major concerns.

Then it was off for a post-op cat scan.   Jake was surprisingly calm throughout and by the time we reached the room again, he was a bit tuckered.   Jake has been napping for the latter afternoon recovering from his busy day and it is nice to watch him rest.

The only issue we have had is Jake's right eye has been tearing a bunch and is a little red.  Jake isn't complaining but we dont want an infectiom creeping up.  After some parent insistence, the eye doctot after being consulted with has decided to come in to take a look.

Hopefully nothing but we shall see.

We want to thank everyone who reached out and participated in Hustle Kindness.  The support is amazing and we know the collective spirit is helping Jake heal.

Post-Op 1 Week (We even got a smile!)

Those that know us are familiar with our mantra with hospital stays that it is the countdown to smiles.  That is always the sign that our little boy is back with us and strongly on his road to recovery.  Well Jake fans, today was that day and we couldn't be happier.

Let us rewind a bit and then we will pick back up at the smile.

Throughout the night, Jake was still a little confused as to where he was and about everything going on.  But at 5:30 am, he woke up alert and was sitting up.  Interesting enough, Jake did bring up one confusing point,  he pointed out that he could talk referencing that we had told him prior to the surgery that he would wake up and not being able to speak due to the breathing tube.  To Jake, he just woke up after his surgery.  It is fine with us if he has no memory of the last week and we are happy to start here as day 1.

Jake's first moments of calm soon turned and he started to get a little irritated.  One thing that made it okay was at least he knew who he was and he was talking to us.   Jake did start to get angry because he was hungry.  We had to await doctors orders to start feeding which meant a small juice box but hey it was a start.  Then, Jake started to develop a little more anger about eating and then ultimately commenting that he wanted to go home.  He switched off between the two. I'm hungry, I want to go home so we had to focus on sitting with him and keeping him calm.  Hard to blame him but Jake had decided he's over the hospital and wants to leave.   We spent a lot of the morning trying to keep him calm and explaining why we can't leave just yet.

After meeting with the doctors, it was the consensus opinion that Jake was ready to depart the PICU and make his way to the regular floor.   Medicines reduced, arterial lines taken out, some extra medicines added in to the regimen to wean him off the drips and the transfer protocol is met.
Jake had some visitors today and he saw Olivia and Luke for the first time as well as his cousin Elias.  Jake wasn't in the best party mood but I think it made him happy to see them.
Around mid-day Jake was ready to be transferred but there wasn't a room available on the floor.
One helpful visit was from Cassie, the therapy dog who was allowed to sit on Jake's bed while he petted her.  We had to continue the waiting game and at 5:30 we were on the move. And as you can imagine, no is ever sad to leave the PICU.

Jake had spent a lot of the day on our laps, sitting up, talking with us, getting angry, demanding things, sleeping, demanding things, getting angry and finally we had a positive story for him, a new room!

Jake has been talking to us all day and going through some pain, some agitation, some sleep.  Although, the great moment happened as soon as we entered the new room.  Jake started smiling, laughing even and for those that know Jake well, he even gave us one of his "you're out" umpire calls.

We met with the doctors and if Jake can continue to progress we hope to be out of the hospital this weekend but what is left is pain management and appetite.   We feel confident we are on the upswing and hopefully the cranky jake has just been a function of some steroids still left in his fat cells and we can keep him smiling and getting better so we all can do what Jake wants, GO HOME!

One more side note in closing.   For those who want to take part again, tomorrow is Hustle Kindness Friday.  So wear your shirts take a photo and post with the following hashtags #hustlekindness, #jakereissjourney, #peachsneetfeet.  And tag Samantha and Lance in your posts.

Post-Op Day 6

Day 6 is an interesting one as it did represent the early range (6-15 days) we were given for Jake's stay in the hospital of this surgery. History has set a precedent and we know that Jake tends to be on the middle to later side of any ranges were are given for hospital stays.

Last night provided the first of some interesting developments with Jake.  Around 3am he refused to go to the bathroom.  It appeared to be a aversion to going to the bathroom in a diaper.  For a kid, the hospital claims may have some delirium, this appears to be a coherent decision.
Come morning it was important to us to discuss with the doctors the plan for Jake.  He was communicative with us and clearly with the bathroom situation was exhibiting signs that he knew what he wanted and wasn't afraid to signal us.

The Plastic Surgery team came by during rounds and did discuss that they thought Jake could be ready for extubation based on our account but due to the OR availability and schedules it was most likely to remain Thursday.  We had our concerns because Jake was clearly uncomfortable constantly pointing to the tube, was communicative and had received 2 full flights of the steroids to reduce the swelling in his throat.   Jake started to become more irritable and tougher to control in his bed.  Thrashing around and unhappy, Jake even used his feet as leverage against his bed rail to push.  What was more concerning is that even with the intubation, we could hear Jake making noises as he tried to speak to us.  During this chapter, Jake was pointing to  his diaper and was nodding when we asked if he had to pee.   We tried to encourage him to just go in the diaper but he shook his head vigorously no.  He kept kicking the diaper in disgust and reaching his hand toward it.  Finally, we asked if he wanted to go in the plastic container and he shook his head yes.   Sure enough, as soon as we got it in place, Jake relieved himself.   It was unbelievable that a kid who had been drugged more than imaginable who was claimed to have ICU delirium was aware enough to refuse to go in a diaper and clamored for the plastic container.  We shook our head in disbelief at his refusal to go in the diaper and he even went a step further and made us take the diaper off.   Jake was angry and it made us realize that why should we keep him unhappy in all forms for an entire day.  How many medicines and other items would he have to be given to relax him enough to wait another 24 hours for extubation.

We had seen enough and requested that the nurse summon the attending PICU physician so we could discuss the plan of action.  We clearly explained that Jake was self aware enough and we were concerned about giving him a ton of drugs to calm him when a major source of agony for him was the breathing tube.  We advocated that Jake should not have to wait for when convenient scheduling of the OR if the other signs indicated he could get the breathing tube removed today.  Must have been  a convincing argument because PICU and Plastics conferred and decided if Jake passed some of their preliminary examinations, we could extubate this afternoon.   Huge Win for Team Jake.

As the time drew near, we grew very nervous for the procedure based on our last go round.  Jake of course had other plans.  He was busy taking a nap.  Half of the staff was waiting around but Jake didn't want his slumber interrupted.  He woke up about an hour after the scheduled extubation and we were ready to begin.  This time around, the process was very smooth which was a huge  relief for two very nervous parents.  Jake was free!

Once we gave Jake a breathing treatment, he emerged agitated and a little grumpy.  Jake decided that it meant he was ready to go home.  Jake can speak in a very low hoarse whisper and he simply kept saying "carry me, let's go home."  We had to convince him to relax and take things one step at a time.  It took some coaxing but Jake was pretty unhappy staying in bed.  After some cuddling and discussion, Jake had some Adovan and it really helped calm him down and take a nap.  The rest of the afternoon has been pretty uneventful as Jake has been resting free of his breathing tube.  We are so happy for him and we look forward to his continued recovery and what we hope to be a departure from the PICU to a regular room tomorrow.

Post-Op Day 5

Well, last night the doctors determined that Jake was suffering a bit from ICU delirium and he may need a different drug to counteract it.  He had stopped responding to increased dosages of his regular meds and we needed to find a away to have him relax.  The new strategy and medicine did seem to work overnight with just one reaction around 3am.  The rest of the morning Jake was knocked out mostly by the new regimen.

During rounds, we discussed the plan of action going forward and it appears in order to be safe that the doctors will wait till Thursday to try extubating again.   In their words, they don't want to fail again so better to exercise caution in getting Jake ready.  Jake finished his round of steroids and started a second one to make sure that the swelling in his throat can be healed so we can remove the breathing tube.    The extubation will take place in the OR this time and hopefully will go as planned versus yesterday's experience.

Then, as we settled in, Jake decided to test us a bit again.  We looked over and he had one eye partially open and seemed very lifeless.  It seemed he was testing the other extreme of the spectrum.  The resident was called in to check and Jake wasn't responding to some touch tests and when the doctor asked about a catscan we grew very nervous.  Jake did respond ultimately and the doctor indicated he was too far sedated then he would like so he reduced some of his levels.  After a little while Jake opened his eyes and responded to some questions and it was a huge relief to know our Jake was back.

For the rest of the day, Jake was resting with periodic waking up where he would open his eyes and answer a couple of questions.  He kept pointing to the breathing tube and we tried to comfort him.   We also wanted to remind him that he was in the hospital and had a surgery just so he could remember where he was.  The psychiatrist recommended we do that so that we help his brain process and remember when he lifts out of such deep sedated states.

Jake is currently resting with his foot crossed over a knee in a very cute and relaxed position.   The big issue is they have to re-insert his feeding tube which they had removed for his extubation.  I hope the medicines he just received will help him get through this with minimal disruption. These will all reset the countdown till extubation as Jake will need to meet his goals of eating, breathing etc. to ensure he is ready for Thursday.

Post-Op Day 4

Monday marked the beginning of a new week at CHLA and a day that we hoped would bring a new phase of Jake's recovery.  You can immediately tell the difference of the hospital during the week versus the weekend.   Rounds start early and fuller teams fill the hallways.  Big day for Jake as there was the hope he would have his eye sutures removed and then his breathing tube.  

The Plastics team made there way to Jake's room before 7am and immediately jumped into action taking out Jake's eye sutures.  That marked the first step of this new phase.   Jake had been breathing on his own which was another step to freedom but the removal of the sutures caused some agitation so Jake had to be put back on breathing support to help while he was given some drugs.   

Respiratory Therapy gave Jake a couple of breathing tests but needed to return in about an hour to see if Jake could pass.   Second time around Jake was all good breathing on his own making in way towards extubation.  The PICU doctors performed their rounds and they too decided Jake had met all of the criteria for extubation.

Jake had started to open his eyes to look at us and started to nod his head to answer yes/no questions.  It felt amazing to see those baby browns.  The only negative for Jake was that his pain medicine had to be dialed back to prepare him to breathe on his own once the tube was removed.   

Around 12:30, it was go time.  They pulled out Jake's tube but he instantly appeared to become agitated and thrashing about while it looked like he was struggling to breathe.   I will spare most of the details of what happened next because it was very difficult as parents to witness and experience but in the end Jake needed to be intubated once again as he simply couldn't breathe on his own.  It was very traumatic to watch while worry and then panic took over. In the end, the doctors assured us it was not what they had hoped but it is one of the outcomes that can happen.   

Poor Jake, he didn't have room to breathe in his nose post surgery and then his throat was swollen and closed up when they removed the tube.  The only positive, Jake was in the prefect place to react to the adversity and get him back on track.

It was a very tough day and Jake was tough to corral once he was intubated again.   He didn't seem to respond to the medicine and kept trying to fight to stay awake versus relaxing and resting.  After many hours, Jake is finally resting but he keeps waking himself up opening an eye and looking for us.   I think he was affected by today as well and he needs the additional comfort for him to rest peacefully.   

Today's turn of events will set the schedule back as they are now giving Jake stronger pain meds and steroids to reduce the swelling in his throat.  They want the second time to be successful with extubation so it may have to wait till Thursday.   Only time will tell and we all need to recover from an emotional and draining day.

Keep Jake in your thoughts.

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.