Post-op Appointment with ENT

More pictures, Mommy!

Today was the day for Jake's Post-op appointment with the ENT.  We knew that the doctor was going to have to take out the sponge that was in Jake's ear.  The doctor stated that it was probably not going to be fun for Jake.  Geez!  Here we go again with not knowing what to expect.  Before we left to the appointment I had explained to Jake that we were going to see the doctor so that he could take the sponge out of his ear.  I told him that he would have to sit really still so the doctor could be really fast and that it was going to tickle.  So we get to the ENT office and as we are waiting for the doctor Jake starts looking at the posters in the office and starts to ask us how the doctor fixed his ear and what he fixed.  It looked so cute watching daddy explaining what the pictures were and what the doctor fixed.  Such a brave boy!  So then we moved into the room next door so that the doctor could remove the sponge.  The doctor also decided to remove the tube that was in his other ear since we were already removing things from his ear. See, when this incident occurred, Jake had tubes in both ears.  So the tube that was in the injured ear is long gone and lost.  Kind of creepy thinking about where it went!  Anyhow, the doctor took out the sponge just like that and Jake did not even flinch!  Yes, he did it, what a champ!  I was so excited!  All morning long I was asking and praying that Jake wouldn't feel any pain.  The doctor stated that he has never seen a child do so well like Jake did!  Amazing!  So that part was over, another hurdle, that we were again not wanting to face.

Getting ready to take out sponge

Sponge (top), tube (bottom)

We have to continue to use a plug during bath time, and we cannot submerge his head in any water for another 6 to 8 weeks.  It will be a long recovery, but I am so grateful that I can hug on Jake, love on him, see him run and play and most of all laugh!  We will go back to see the doctor in 3 to 4 weeks.  Please continue to say prayers that Jake's ear heals with no pain, no infection, and that his hearing is regained, so that we will not have to go through another surgery!  I have added a picture of what his incision looks like today.  Every time we see his ear it is a constant reminder of what Jake is having to go through.  It has been a BIG challenge not to get angry every time!  Since I have been writing about Jake's blog I have realized that I need to start focusing on my heart healing, as well.  This has not been an easy situation for Joel nor I.  I just wish I knew where to start!  Jake's spirit has not suffered and that is what keeps us going!  We will all heal, with time.  Again thanks for all the thoughts and continued prayers for our family!  Jake is a true champ in our eyes.

Incision behind ear

Lets not forget the little brother, Ayden, who has been a champ through all this too!

The day is here for Jake's surgery

Of course, Joel and I stayed up till all hours of the night avoiding going to bed.  We knew that when we went to bed, we would soon wake up and get ready to take Jake to his surgery.  That may have backfired on us as we are exhausted now, but everyone deals with things in their own way right :)!  Well, needless to say, it was inevitable for this day to come.  It is here....today, the day that we have been dreading since we heard the word "possible surgery."  Want it or not it was going to happen!  So we get up and Jake happens to wake up earlier than he normally does, what are the chances?  We've now got to occupy a 4 year old to not want to eat or drink anything until his surgery at 11:10am?  I banned the entire house of eating or drinking anything until he left to surgery.  Let me just tell you this, it is possible, because he did it!  Amazingly he never really asked for anything, and I thank my in-laws for being here that made this possible!

He was playing, giggling, and having all kinds of fun!  Meanwhile, I am watching him with my eyes flooding with tears already and we hadn't even gotten to the surgery center yet!  Geez, this is going to be a tough day, I say to myself as I try to get myself ready.  On the way to the surgery center he got some toys and made an angel, and says, "look mommy an angel!"  I said, "wow," and he said, "remember when I made an angel in the snow?"  "Yes, I remember Jake!"  At that moment, I knew that he was surrounded with angels and that he was protected!  It was pretty awesome, it was exactly what I needed!  Earlier in the morning, my cousin called me who recently lost her 15 year old daughter, Alexis, out of nowhere with an illness that she got.  Well, my cousin called me crying and told me that she told her daughter Alexis to be with Jake through this.  She also told me that she told Alexis to let me know that she was with Jake and I believe that when he made an angel out of toys, that was it!

Mommy, enough kisses!

Silly Juice with smiley face in his left ear

We get to the surgery center and it is time, just like that!  Wow, Jake is a champ!  He is one of the bravest kids I know!  He goes back to surgery with his Captain America doll and his Halloween Garfield movie playing on the dvd player.  Life is good on silly juice!  Let me tell you, I was about to ask for a shot of that silly juice myself, because my anxiety was through the roof!  Of course, I cried the tears that I had been holding back since I woke up that morning and my most AWESOME husband comes to my rescue with, "he's going to be fine, Annette, we've got to believe that he's going to be fine."  I don't know what I would do without my husband, he truly is amazing!  So the tick of the clock starts as the countdown starts for a 3 hour surgery.  It was probably the longest 3 hours of my life.  It felt like a lifetime, but we managed through it!  "Mr. and Mrs. Garcia, the doctor is ready to talk to you!"  Joel and I could not run over there fast enough!  "He did great!"  What a relief!  The doctor stated that he fixed the hole with the skin graft, which he believes will be successful!  He also stated that he did not touch the bones, because during a reflex test the bones were functioning the way they should.  The doctors gut was telling him not to touch them, to leave them alone, and see how Jake's body tries to mend them back together!  Another relief!  This journey is still not quite over yet, but the surgery was over and it was a great moment for us!  It is now time to see Jake!  Jake was quite, but awake!  He slurped on his popsicle that was given to him and was ready to go home.  We got home and he bounced back to himself, which was so great to see.

Came out showing Gig'em :)

Let's go  home!

I'm so happy to be home!

  He has truly amazed me in this journey and I believe that all the support and prayers is what has given him the strength and courageousness to endure this experience that he has had to go through!  We will continue to take this journey day by day and continue to have faith that god is here with us every step of the way!  I pray for a quick and speedy recovery and that Jake continues to be pain-free and able to swim, something that he is been wanting to do, sooner than we expected!  Lots of love to everyone!
Jake, Ayden, Annette, and Joel

It has been a long day!

Preparation for surgery with the Child Life Specialist

Today was the test to see how really prepared I was for what we were about to be facing tomorrow with Jake's surgery.  We had an appointment with the Child Life Specialist.  Michelle met us at the front of the surgery center and helped to prepare Jake and ease my heart!  Jake was all smiles as he typically is, which made it much easier for me to get through.  Jake got a checklist of exactly what was going to be happening.  She took us to the pre-op rooms and showed Jake and let him experience what his visit would be like.  He was able to wear a doctor's hat, and smell the bubbled gum scented gas mask that they were going to put him to sleep with.  Michelle also wrapped Jake's Rhino Build-a-bear with the dressings that Jake would wake up to so Jake would know exactly what was going to be on his head.  Ayden even wanted his Monkey Build-a-bear to have the same dressings!  Overall, I think this tour was harder for me than it was for Jake!  At the end, Jake and Ayden, got a popsicle for being such good troopers through all this.  When it was all said and done I got in the car and immediately started to become flooded with anxiety, fear, helplessness, anger, and all the emotions that come with this situation.  I found myself driving us straight to church!  I took the boys to the noon mass and met a dear friend of mine who has helped me keep the faith that all will go well and that god is keeping an eye on Jake!  Church has always been a quiet haven and place I have went to since college just to take a breath, regroup, and pray for things that were out of my control.  I am so thankful that I can go there at any given time and feel the peace that I need to get through the trials that we are put through.  Needless, to say, I left church with a little more strength than I had before I got there!  It is so easy to get sidetracked and focus on the negative and anger that I have, but I have got to stay focused and keep FAITH that Jake will be okay and get through this, that we will all get through this!

Surgery

“I love you so much, mommy,” while rubbing my arm up and down is what Jake said right before heading out to our ENT appointment.  My sweet boy who out of nowhere tells me that with a huge smile on his face.  Now, as I walk outside of the ENT office, I have to explain to my sweet baby that he will have to have surgery.  How do you start to begin to explain this to a sweet innocent boy who did no wrong.  Joel is right, his spirit is not broken, he still has that sweet smile and is full of joy.  Meanwhile, our hearts are breaking for him with anger, fear, shock, and the list goes on.  

I first want to say, “thank you,”  to those of you who check this blog continuously, call, email, and text to see how we are all doing!  It means so much to us that we can’t even explain.  

As we were on our way to the CT scan a couple of weeks ago, I was digging in my purse and came across my camera.  I told myself that I should take a picture of Jake by the CT scan because this is a journey that he is having to go through and I want him to see how brave and strong he was when he is older.  So I decided that I am taking pictures of everything that Jake is having to endure so that everyone can see for themselves and understand his journey.  

The ENT appointment in a short form went like this:  The hole is still there and needs surgery to be repaired.  His hearing is the same as last time.  As far as the CT scan goes, one of the bones in his ear has been separated and the doctor will not know what to do with this bone until he goes in there.  The surgery is set for Tuesday, August 2nd.

At the beginning of all this, I was trying to figure out a way to make this a positive experience for Jake instead of it being a negative one.  So I decided to use ABA therapy, something that I was taught when I was a Behavioral Resource Therapist.  This involves getting a treat for everything that he is having to go through so that he can remain strong through some painful things.  Here are some of the treats that he has gotten for being one of the strongest boys I know!  Right now at this moment you cannot put a price on just making him smile for what he is having to go through.  

I continue to pray that this will not break his spirit.  This journey is not over yet, and I just pray that we will soon be able to put this whole experience behind us!  We would not be where we are today if it weren’t for all the support, words of encouragement, and prayers out there.  Please keep them coming for Jake’s upcoming surgery.  

Hearing test every time we visit ENT.

Lots of Love from the Garcia's!

Ear plug that we have to put in for every bath.

CT Scan

So we went in for Jake's CT Scan this morning.  Man, he's a champ.  Before we got there, we were explaining to him that the doctor needed to get some pictures of his ear.  And of course he asks why, and then follows up with, "He's gonna take pictures to fix my ear?".  And of course, our answer is yes.  So we proceed to explain to him the importance of staying still and that if he follows through he'll be rewarded with a prize.  We tell him that he needs to stay as still as a statue...........frozen.  "Frozen, like ice!" he yells at me.  LOL.  Yes Jakey, frozen like ice.  So we get to the hospital and he's all smiles.  He sits on the table, the technician goes through the motions of how it's going to all play out, and he's ready to go.  Puts his head back in the harness and away we go.  Annette and I are suited with the radiation vests that I'm sure everyone is aware of and we stand over Jake while the machine whistles and spins.  Jake is motionless, except for the smiles as he watches his favorite movie on the portable DVD............Garfield's Halloween Adventure.  And no, I did not force my child to select this movie as his favorite.  He just happens to love Halloween.

What seemed like an eternity was more like 4-5 minutes.  Jakey remained motionless.  The technician comes in and says, "Perfect Jake.  You were perfect."  Thank God!  They had warned us on Friday that if Jake couldn't hold his position, they were going to have to reschedule and have him sedated for the procedure.  The inner ear bones are so small that the person getting the images done has to remain motionless through the entire process.  Jake did it!  So no sedation!  Woohoo!  I know, I know, it doesn't seem like a major feat but you try to get a 4.5 year old to sit still for more than 1 minute, much less 5!

So, they finish up and the technician is asking Jake questions, and he's stiff.  No movement.  She finally says, you can move.  LOL.  So Jake relaxes and starts to move around, jumps off the table, and says, "Where's my prize?"  LOL.  Momma didn't raise no fool!

More of a waiting game still.  We get the results of the CT Scan hopefully in the next few days.  If the bones are where they should be then we focus on the hole in the eardrum.  If the bones are misplaced or cracked, then we deal with it when go back in two weeks.  Either way, in two weeks we'll know if Jake has to have surgery or if his ear has miraculously mended itself.  Stranger things have happened!  I envision him to be bionic, that his little body is working feverishly to close that gap.  I try to think of him as a starfish because starfish are capable of regrowing appendages that have been severed.  So, when you're praying, ask that he be a bionic starfish!

Odd Morning

It's amazing what your mind does subconsciously.  Last night Annette let me sleep on the couch so that I could get some rest because I've been working some late nights.  Right now both boys are sleeping with us in our bed just because we're still nervous about them not being with us.  I know, I know.  We're going to have to eventually get passed this.  Anyway, so she tells me to go to bed on the couch and I do.  Odd thing is, I woke up in Jake's bed.  In the middle of the night I must have woken up and slept walk to Jake's room and fell back asleep in his bed.

Sleep walking is a rare occurrence for me but I have done it.  When Jake was first born and I had just started my business, I was wearing my body down by not getting enough sleep.  I found myself sleep walking.  Maybe this is God's way of saying, "Joel, take it easy.  Get some rest.  I'm taking care of this."  So, tonight............going to bed by 9pm.  Don't call us!!  LOL.

No More Mickey Mouse Band-aids

So Jake slept with me last night on the couch because Ayden had fallen asleep with Annette on the bed.  Too many arms and legs flailing around to sleep comfortably.  Anyway, I wake up this morning at 6am and instantly turn to inspect Jake's ear...........as I've done countless times.  And my heart sunk.  Panic.  There appeared to be dried up blood all over his cotton ball.  I refocus my eyes to assess the situation, and come to an instant relief when I realized that those blood stains were merely Mickey looking back at me from the white band-aid.  Too late though, the damage was done and I had to rush to the restroom to deal with my instant diarrhea.

When Annette woke up I told her, "No more Mickey Mouse band-aids."  We need bright, we need vivid, we need eye-popping colors.

Just a few photos to show you that Jake is doing great.  The first one is of him and Ayden.  Ayden wanted to wear a band-aid on his ear just like Jake.  So he wore his band-aid all day that day.  The second one is from last night.  He was pumped about the chocolate cake that momma bought him.