Post-Op Check-up

 I just wanted to close this procedure off with an update.  Over the last weeks, Jake has been dealing with his soft food diet and even the need to replace his palate expander once already post surgery.  Overall, he is doing great but is itching to eat real food.  Yesterday, Jake had a checkup with his surgeon, Dr. Urata and was doing great all systems go.  Jake can begin adding more foods to the diet except for ones that require excessive grinding.   Better news, he was even cleared to go skiing on our trip so he is very excited.  It was 50/50 if he would be able to go so it was nice that he got some good news.  We will continue to distract with the expander and ultimately set the table for braces and corrective needs.   Jake's 2nd big step for his jaw surgery will wait till he is done growing so he will now have a decent amount of time before needing to have another surgical procedure.   

All good news, once again Jake continues to impress us with his resilience.

Palate Expansion

 Jake had his next step in the process today with a visit to the orthodontist.  The purpose, to put in the palate expansion device which would add support to his jaw while expanding his palate.  The device requires a daily turn of the mechanism.  The good news Jake once again showed his toughness and got the through the install with no reaction.  This will start a two month process to execute the spatial plan.  The orthodontist even remarked that Dr. Urata did more thsn originally indicated. That has often been the case where he knows the surgical path and will do as much as he can for future steps down the road.  Jake has been doing great and we are so happy this part didn’t set him back in the pain dept.  Jake has some swelling in his cheeks but he is on a nice healing trajectory.

Weekend Update

Jake has been doing very well considering everything.  He as we don't love the 2am wake up for the meds but Jake hasn't taken any pain meds or Tylenol since being home.   He has his bouts of irritability and being uncomfortable but considering everything that he has been through, we will gladly deal.  Jake has been sleeping through the night outside of the medicine wakeup.  His struggles a bit to want to eat and the liquid diet does not help things.  Jake is having his share of ice cream along with mashed potatoes and soup.  Some of his grumpiness probably can be attributed to being hungry as the liquid meals aren't quite doing the trick.  Jake is very adamant about his shower in the am as he doesn't like the build up on his face of the drip.   Overall, he looks good albeit swollen.  He has been doing as good as can be expected although he did have an episode this afternoon where he was refusing to take his pain meds.  

He is feeling a bit better after eating and just took some pre bedtime meds.  Tomorrow will bring the palate expansion device and we are nervous about how that procedure will go.  Let's all hope that it goes easy for Jake tomorrow and we don't have a pain setback.

 

Day 2 Looking Back

 Figured, we would start a new post looking back after the update about going home.   

Jake's first night was rough and neither Jake or Sam got much sleep.  Jake was really bothered by his eye and until a saline flush did the trick it was the most item he complained about.  He def. felt some pain but he really has only taken the painkiller once.  Friday Morning, Jake was a little antsy and had moved his way out of the bed into the chair so a positive sign.  The morning reports from the Drs were that he looked good and to expect the drainage from his nose and mouth but we would reassess around 12 about his prognosis and ultimately the discharge decision.  Jake was a bit grumpy Friday am but really more focused on wanting to go home.  Hard to blame him when you are poked and prodded during your hospital stay.   The nurses were all really great and super attentive and Jake was working his way through some food.  Pureed waffle, anyone?   Jake was requesting to be unhooked from the usual wires so he could go to the bathroom himself so all really good signs of improvement.  Around noon, one of the residents came by and we discussed Jake's prognosis.  He was really indifferent to Jake staying or going and yielded to us on what felt right.   We agreed to touch base around 2 to see how the day was going and make the decision a little later on in the day.   Jake was hungry and asking for food keep in mind liquid diet only.  He had some soup and a puree of mac & cheese and it was encouraging watching him feed himself and more importantly be hungry.  Jake repeatedly expressed his desire to go home and ultimately with him foregoing the pain meds and seemingly ok, we spoke with the Dr and made the decision to discharge.  Jake in true Jake fashion rebounds remarkably and always impresses us.   Once we were in the car, he announced he was good at this.   Not something we want him to have a skill in, but he is right, he is a tough fighter who is resilient and our little guy always impresses us.   LA did what LA does and gave us nice bumper to bumper traffic home but Jake was greeted with a sign and loving family so let's just say as always, good to be home.   Jake after a shower really looked cleaned up and you could barely tell he had been through surgery.   We went to bed early and a great night sleep for Jake with the exception of the 2am wakeup to administer some meds.  Jake didn't need the heavy pain stuff which is an amazing sign.  This morning, Jake's nose is bothering him because all of the drainage but he had a breakfast of champions, ice cream and is happy to be home.

Officially, Jake's surgery is a Palate Surgical Assisted Rapid Palatal Expansion Sarpe with Lefort Cuts-Bilateral Maxilla; dental extractions Tooth #T,K, 11,20,29.   He did lose 5 teeth in the process and some of the Lefort Cuts set up lower face surgery when he is done growing.   

The next part in the process will be a visit to the orthodontist on Monday to put in a palate expansion device.  

We hope Jake continues to thrive with minimal pain and just some discomfort in his nose and mouth from the drainage.   Good news he gets to have his favorite meal, ice cream.

Discharged

 So tired but we are home thankfully.

Updates to follow 

Day 1

 Today was a long day at Children's Hospital but we did catch a slight break as I mentioned in the previous post as the 11am call time for a 1pm surgery did get pushed up to a 9:30 arrival and a 11:30 surgery.  

Jake was in good spirits this morning and was patient during the pre-op drills despite being mostly a repeat of vitals and questions that we have answered multiple times already.  

Spent the 2 hours waiting for the inevitable name call, and Sam took Jake up where she would discuss many of the particulars with the anesthesiologist about Jake's previous allergic reactions that have been undiagnosed.  Jake told the nurses he didn't need the funny stuff (Verced) to calm him before the surgery which was helpful because we hoped it would help eliminate his nausea post surgery.   

Then came the normal drill as we wait around checking the board which counts down the minutes in the OR.  A new update technology, an app Ease that updates on as well from the operating room.   The surgery lasted approximately 3.5 hours and the nurse called our name to take our beeper away informing us a Dr would be down to discuss.   45 more minutes went by and no sign of a doctor so we checked back in as we started to get nervous wondering what if Jake experienced his allergic reaction in the OR again.  We were assured there wasn't any complications and the Dr would be down soon.   Before long, the Fellow came down to discuss the procedure.  It seemed to be more in depth and complicated than previously discussed and Jake had 5 teeth extracted that were living way above the gum lines even near his nasal passages and had to have parts of his jaw cut through. All of this to prepare for palate expansion and the incisions ranged from his bottom of his mouth, the top of his mouth, and his jaw.  The mission to help remove problematic teeth that wouldn't ever come in and set the table for his mouth to be able to be worked on with orthodontia to come.  This procedure will set the stage for his 2nd part of his really big surgery the lower half but that probably won't happen till 18-20 or whenever Jake finishes completely growing.  In our family, that can be awhile.  

The new protocols only allow one parent to go up so Sam went to recovery to greet Jake post-op.   At first, Jake was sleeping but then he woke up and was talking with Sam.  After a little while, we switched places and Jake was a little disoriented but very funny making jokes and wanting to move around and talk a lot.  He did look like he had gone a few rounds in a heavyweight fight but once they cleaned him up a bit, he looked really good.  Before long, they did inform us that a bed was ready and we were able to make our way to a room.  Jake is staying the night at the hospital.  Getting to the room, Jake showed some nice signs and said he was really hungry.  Soon that led to Hangry as he didn't understand what was taking so long.  Jake can only have liquids so he had to settle for broth, a Boost and a frozen ice cup.  The wait was making Jake a little antsy and he calmed down after getting to consume a bit.   Unfortunately, Jake will be on an all liquid diet for a week which was an unexpected wrinkle.   Jake was complaining about his eye bothering him and we think it actually is the area near his sinuses where a tooth was removed so probably a factor or irritation and swelling.   We hope he is able to settle in and sleep a decent amount tonight.   Sam will stay with Jake at the hospital and await the Dr.'s in the am.   

A long day/night and we hope for a somewhat restful night for Jake and Sam at the hospital.  

Glad to put day 1 behind us.

A little photo of Jake pre-surgery.

Surgery #14

 Today, we visit Children's Hospital LA for Jake's 14th surgery.  Jake will be seen by his craniofacial surgeon, Dr. Urata.  The procedure is necessary to adjust malformations with Jake's teeth and palate and allow for proper spacing to fix some malformations with his teeth that are trapped above and set the stage for corrective work in the future with his palate and mouth.  

We had Jake's pre-op on Tuesday and he passed his Covid PCR requirement so off we go today.   As Jake has gotten older, his surgical wait times have increased.   Since it is a children's hospital age determines the start time so Jake is going to have to wait till 1pm for his surgery with us needing to arrive at 11am.   More updates to come later and there is a chance Jake wouldn't need the hospital stay tonight but as is the case with all of the past procedures, he always seems to be on the longer side of the estimated hospital stay or recovery timeline.  

The patient is in good spirits this am which is all we can ask for.

Keep Jake in your thoughts today.

****Breaking News-  Surgery just moved up so we now arrive at 9:30 for an 11:30 start time.

Discharged

Day 2 was our favorite kind as it resulted in a Discharge from CHLA.  They wanted to make sure that Jake would eat on his own and this morning he woke up hungry and ate a little in the morning.  His Dr. came by and said he was doing well and gave the all clear to take him off the IV and clear his path to go home.  Jake seemed much better and before long, it was time to leave.  It always feels good to leave the hospital especially this time so quickly.  Jake was in good spirits and excited to come home.  Jake has been doing great all day and was very happy to see family and especially his brother and sister when they came home from school.  All in all, our favorite kind of day, uneventful.  We do have to be very careful with Jake as we don't want him to fall and his head is at risk.  His mouth seems to be healing as well so now he just needs a little bit of healing time and he will be on his way.  #13 is now in the rear view mirror and hopefully we will get a reprieve before anything else is needed.  Tonight everyone needs some well deserved rest so hopefully we will all get some.

Long Day 1

It started early and we went through the normal routines of hospital and surgical admitting and before long we headed upstairs to meet the Doctors.  We discussed the surgical plan and the normal things to look out for and then it was go time.   Jake was brought into the OR and we headed downstairs to play the waiting game.  A couple of hours later we headed upstairs to see Jake in recovery and it was interesting to say the least.  Jake was battling with the anesthesia and was irritable and unsettled.   We tried to comfort him but he was bothered by his IV and of course just wanted to go home.   After about 15 minutes, Jake settled and fell back to sleep.   The good news he said he wasn't in pain and slept it off, the bad news the waiting game for a bed.   Jake slept for several more hours and we took turns eating lunch before he decided to wake up for good.   Jake was in much better spirits with some more sleep in him and we met with the surgical fellow and everything went according to plan.  Jake was going to stay at the hospital for observation but the best news of the day was that he didn't have his surprise allergic reaction like last time.   Small things....  Unfortunately, we spent most of the day crammed into the recovery area because there simply wasn't a room available.   Finally, around 5 we got the news and headed to the 6th floor.   Right after settling in, Jake had a Popsicle but shortly thereafter he was sick and threw up.   This happened several times throughout the rest of the evening and the plans for food put on hold and Jake was put on IV fluids.    Perhaps, the medicines, perhaps blood draining into his stomach from the teeth extraction, Jake was just a bit out of sorts. Jake is sleeping it off now so hopefully he will have a restful night and feel better tomorrow.   His face and head are a bit swollen but overall we will take it as a positive day one.    Thank you to everyone who sent messages, photos and expressed their support.  It truly means the world to us that on these days we feel the love and support from our friends and extended families.   Just know your comments, like loves etc. are allread and felt. 

Surgery #13

Tomorrow marks surgery #13 for Jake.  Call Time is 5:30 am at CHLA for. 7:30 surgery.  They will be working on Jake’s forehead to help smooth out and provide layer over the metal contraption that is holding his head together.  He also needs to have multiple teeth removed which are hidden in his gum line.  On a positive note this is a quicker procedure than his ten hour marathon last time around but always nerve wracking to hand our son over to the surgeon at the hospital.
We will update the blog more tomorrow.

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.