Super Tuesday

Well not much else to say. Jake has been discharged and we are now home. Jake was laughing today and now is fast asleep in his car seat. We are thrilled to be home and its great to see our boy return back to himself again. The swelling will take some time but he already has healed a lot and we look forward to his continued healing. Another hospital visit finished and another chapter put to bed.

Can't keep a fighter down

Well folks, little Jake has decided enough of this nonsense.  This AM the swelling went down so much,  the Dr. decided we could take out the stiches in his eyelids and remove the bandage on his head.  A little while later, Jake opened his eyes and looked at his parents for the first time since Friday. His eyelids are swollen but he could open them up a bit.    His head now has a headband like shaved spot from ear to ear where his hair is shaved complete with zigzag stiching.  The stiching is performed in this manner to allow for the hair to grow back.  For the time being Jake is setting a new hair trend with a clump in the front and his hair in the back.   Jake regained a lot of energy and we played with him all day.  The highlight being when the brothers were reunited today as Luke visited his bro in the hospital.  The two were so happy to see each other and we put Luke in bed next to his brother.  They held hands and looked at each other.  And then the moment we've been waiting for since the surgery began, Jake flashed us a smile.  It's amazing what a smile can do as therapy to all we have been through.  Our little boy is back emerging from the pain to resume more of his normal self.  He has healed so quickly the dr.s want to release him from the hospital tomorrow.  It's a little scary but we are amazed at the turnaround.  All good things to report and hopefully the next post will be us leaving the hospital.  

Recovery on Super Bowl Sunday

Today had some interesting developments and certainly put things in perspective on a day when all that used to be thought about was what should I eat, whose party should I go to, who will win the game. Instead, Jake took center stage as he should and the trivial things I used to worry about are just that trivial.

Thankfully, Jake didn't get any more swollen from yesterday and his doctor felt like yesterday was really bad and that Jake probably reached his peak swelling early on. Today, Jake appeared to lose some swelling which provided some relief to us. Sam said he had another rough night and one of the nurses thought that perhaps rather than pain he could be agitated from not being able to open his eyes. We gave him some adovan to relieve any anxiety and it seemed to help as he rested most of the day and even regained some of his appetite. At one point during the day, he woke up and was moving his hands more and seemed to want to move his eyes. I spoke calmly to him to try to relax him and he ate some more and did calm down with his second dose of adovan. His eyes have reduced in swelling so we hope that perhaps tomorrow the dr. would want to remove the stiches from his eyes. We'll have to see. The good news Jake is out of the Pediatric ICU and now in a regular room at Cedars. We'll wait to see the outcome of tomorrow's report but today was def. a step in the right direction as the swelling starting to ease and some appetite is back. I found it nice that the Giants won tonight's game as it's great to have positive outcomes when no one expects it. Anything can happen and the Giants proved that. I think lil Jake liked the underdog winning and he will soon learn to relish that role.
More to come tomorrow as we put another day behind us.

Recovery Day 2

No other way to put it but today has been a tough day.  Sam had a very rough night up most of it with Jake as he cried throughout the night.  I came to the hospital early to relieve her so she could get some rest and go see Luke.  I spent some time with Luke at home before coming to the hospital which was nice as he is a cheery sight for sore eyes.  Its hard for us to not see Luke  and we think he misses his brother and wonders where he is. 

Once at the hospital, Jake's swelling had gotten much worse from yesterday.  Our poor boy's head has multiplied probably to twice its normal size and his eyelids and face are so swollen and turned purplish black.  It is very hard for us to look at him with his eyes sewn shut but based on the immediate swelling we can tell why the dr.'s do this.  

I met with the Dr. rounding this am and he was pleased with the surgery and did want me to know that Jake is completely stable and all signs are great.  The only thing we have to contend with is the dramatic swelling.  This will continue to get worse and worse probably through Monday.  

I was able to hold Jake in my arms this am and I do think it helped calm him as he was cradled in my arms in his favorite position.  Jake ate a little from his bottle but we have the IV bringing him fluids as eating isn't a top priority for him right now. 

A few good things happened today...  they removed his arterial iv line and his catheter so two less wires occupy his body which pleases us.    They also stopped his continuous morphine drip and give him it manually but its a step in the right direction for the healing process.

But with every hour that goes by our boy swells more and more and it is so difficult to see our little angel look so swollen and uncomfortable.  He also is developing thrush again as a reaction to the antibiotics similar to Boston.  We caught it right away and he is already taking medicine to counteract it.  If you don't remember, thrush is a viral infection that causes tons of little bumps to appear all over his tongue and throat that cause discomfort not what little Jake needs right now. 

Jake did get to visit with his grandparents and godmother today so hopefully that made him a little happier to hear their voices.  We put a few photos up of Jake and Luke so the staff can see Jake's smiley face and know what the sweet boy hidden beneath all of the swelling really looks like.  

Jake is well enough to transfer out of ICU to the pediatric ward but there aren't beds available so he probably will move down there tomorrow pending availability.  

We have had a tough day and at times wonder how we get through all of this.  It is heartbreaking to watch our little boy deal with this pain and swelling.  With each passing day and post to the blog we get one day closer in the healing process and putting this behind us. Our love for Jake keeps us strong and probably the only way we can deal with this surreal experience.    

Once again, thanks to everyone who has reached out and offered their support.  Its time for the exhausted parents to rest and lets hope tomorrow isn't overwhelming.

Jake made it through

Bilateral craniotomy with frontal and orbital advancement with bone grafts.  As scary as that sounds its even scarier when its explained to you by dr.'s who then perform it on your 8 month old.    

We started early today arriving at Cedar's at 5:15.  After the paperwork, pre-op evaluations we turned Jake over to the Dr.'s at 7:30 and nervously trudged to the waiting area.  It is not easy to hand over your son knowing what he is about to face.  In basic terms, they were reconstructing his skull to allow the brain to grow.  

We sat around waiting for the first call to let us know that surgery had begun.  It takes a while to prep all the anesthesia tubes etc. and the surgery didn't start till around 9:30.  Around 12, Dr. Danielpour, jake's neurosurgeon, came out to let us know the surgery was going well but they did have to repair a tear in his dura, which is the lining that protects the brain.  We were warned this often happens and in many apert cases multiple tears.  Jake escaped with the one that was fixed immediately in the OR as the craniofacial team led by Dr. Urata began the reconstruction.   All day we waited nervously but comforted by family.  Around 2:30, Dr. Urata came out to let us know Jake was fine and the surgery was completed.  The surgery went well and they really overcorrected the forehead to allow for the brain to grow.  With a lack of the better word, they describe it as "frankenstein-esque".  Jake didn't really have a forehead before and now he will have a prominent one square in nature that will take a few months to round itself out.  Jake didn't have as much bone as they would like making the construction a bit tougher. Similar to a mosaic technique, they craftily worked to put his skull together in its new form.  Slightly less tall and more far forward.  In time Jake will regenerate bone to fill in some open spaces for added protection but his head is very delicate for now.  

Then came the warnings of what we were about to see.   We were warned about the prominence of the forward adjustment and that his eyes will be sewn shut for a few days.  Over the next two days Jake's head will swell so much that his head will grow to a very scary size.  To protect against the eyelids turning over and in some cases eyeballs popping forward, they sew the eyes shut.  As you can guess all of this takes our total mental reserve to process and get through.  

Needless to say we were scared to join Jake in his ICU room and it was slightly shocking at first.  His face has taken a different form some of that distortion temporary swelling and some the overcorrection that will assimilate in a few months.  His eyes are shut and that's a tough sight for any parent to see their baby look so pale, so swollen and whimpering a sad sad cry.   

We have been with Jake all evening and Sam will stay the night with him.  He is on a drip to ease his pain and we just fed him a little apple juice that he gobbled up.  The Dr.'s do tell us the moaning is a medicated state and he isn't awake to feel the pain but somehow that doesn't make it any easier.   

We are so relieved to be back with our little boy but today and the next few days are extremely tough for us to get through as we just want to alleviate any pain from our poor little guy.   It seems unfair how much he has been through in his eight short months but he's a tough guy and we get through these times knowing that all of these surgeries are steps in helping him get better.  

Say a prayer for Jake for a speedy recovery and wish us well as we are scared about this swelling of the head we have been warned so much about. 

Thanks to everyone who has reached out with their thoughts and prayers.  

Lance & Sam