Wednesday, February 4, 2015

His story.

Yesterday started with a full day of pre-ops. What was once dreaded...is *almost* enjoyed. This team of doctors cares deeply about our family...and us, them.


Azlan having a heart to heart with his plastic surgeon.

For the first time, he's now old enough to sign his own name on the paperwork :)


Playing lots of games with Mommy


My favorite. His craniofacial doctor is not just his doctor, she has become my friend.


Azlan signed up to take part in a research. A questionnaire, photographs with this weird hat ...



And while he did it knowing of no reward, he was given a $15 Target gift card for participating!


This was NOT the favorite part.  Dentist. Lots of uncomfortable X-rays and photos in his mouth. I love this picture. He's looking in there to see what all the fuss is about :)



But...the day ended well. A pre-surgery dinner at Five Guys with all of his favorites!  Look at that crew! :)


He ate and ate and ate all evening, knowing this time he was going to get his fill of hard foods before this soft diet that was to come.

We checked in at 8:45am this morning.  We were taken back right aways. And then oddly waited for HOURS. Not easy when you are a young child, fasting. However, we found out there was an emergency that took our 9:30 O.R time and we didn't get back there til after 11:30!


All ready to go into surgery!


This was such an amazing moment.   I saw this doctor walk by...stop...back up and peek in our room. "Azlan...is that you...? WOAH!" :) This is his first plastic surgeon. Yes...from 5.5m and 10.5m!  He saw his name on the file on his door and he always told us he would never forget the name Azlan b/c he loved it! He went and got his full file and I heard him out there showing other doctors and saying "this...? This cleft is as bad as it gets!!". He came back in and took a good look at Azlan's face and palate, admiring his work. So glad I got a picture of them together. We haven't seen him since Azlan was a baby!!



We opted not to pre-sedate this time as his time in recovery is so much longer when we do.  Instead, I dressed up and went back to the O.R with him.  He was definitely nervous once we entered the room (who wouldn't be) but laid down like a pro. I held his hands the whole time as the "root beer mask" was placed on his face. He went to sleep very quickly without the jolts of his limbs like in September. With a lump in my throat, I kissed his cheek and was taken out of there.

This is the crazy part.  I haven't shared this yet because...well...it was crazy and I didn't want to get anyone's hopes up. In hindsight...I'm glad I didn't share it.  

The orthodontist came right before surgery and said "ummm so something strange showed up on his dental X-rays yesterday.  Really strange.  Bone.  We know 100% of the implant was removed from the fierce infection but there is definitely, definitely bone growth there. In fact...he may not even need this surgery today." 

What...?

I peppered her with questions.

What in the world? What are you talking about? Bone growth from where? Where? What...??

She said it could be that a few cells from the implant remained and grew...miraculously...and filled the gap.  

What...??

I mean. Are you kidding me...?

He has an ENORMOUS gap in his bone.  HUGE. 

The graft was 100% removed and now you are telling me on X-ray there is bone where there shouldn't be and we may not need this surgery...?

I approved an X-ray in the O.R that would show more accurately. Then she promised to come talk to me and update me.

Since I didn't feel right sharing this crazy...hopeful...CRAZY news. I sat and waited. For 45 long minutes~!! She finally came out and her look said it all.  Ahhh.

There was bone growth. The angle of the X-ray yesterday made it look complete.  This X-ray showed it was merely this point that regenerated from some graft cells. STILL CRAZY.  Leaving the gap looking like an hour glass instead of a huge gap.  Surgery was moving forward. He needed the graft.

Ahh.  

:)

It was a wonderful thought.

And would have made for a fantastic story.  An amazing blog post.

Of all the prayers that went up for Azlan and all the disappointment with the awful infection and removal of the implant...can you imagine?

But it wasn't his story.

This is his story.  This is the one God is writing for him.

A few hours later I was updated that things were going really well. 

 The lady behind the surgery counter desk saw me struggling with heavy bags and offer to store them behind the counter. She smiled and said "I don't offer that for everyone" and I asked if I'm a familiar face...she smiled.  :)  I know the answer.


I was paged to come back to surgery.  Everything was done. The surgeon wanted to meet me.

He said it went great.  He talked about the bone growth and we both laughed at the hopeful thought of not needing this surgery...but quickly came back to discuss our reality. 

Bone was taken from his right hip this time. Similar incision. Everything was similar.  Except this time he's on antibiotics and we are watching closely.

When I finally saw my boy...it was that same face. That same familiar, dark eyes.  Pale...swollen...blood stains around his mouth. My boy.

I immediately laid in his bed with him.  He was so sweet.


Identical to the surgery in September...I could tell there was pain. He said it was a 4. (That's an 8 in our language...he has an incredibly high pain tolerance).  He was given morphine and felt better once that set it.  He has a nerve block in his hip that is helping a lot but the pain is in his mouth.

Then there is this. This beautiful face.

Left side of the photo you can see the swelling. While he looks amazing, his face is asymmetrical so the right side (left of photo) is very sunken in, smaller jaw bone etc. Yet here it's puffier than the other.  In other words, extremely swollen.





Once we got his pain under control we settled in for the night.

He's drank, eaten (all the soft mush they served. He must have been hungry...) and even stood up once so we could remake his bed.

He's laying here beside me, breath heavily as he's always done.

Tonight I'm thankful. Though it looked like we were so close to miraculously skipping this major surgery...here we are.  And though we were SO close to having Russell Wilson come visit us (we were on the list, he was only steps away from us)...we are thankful he spends the time with kids who definitely needed cheering more than Azlan does.  

Tonight we are asking you to pray. Please pray against infection.  According to Azlan's medical chart, he is "high risk for infection".   And with an insanely high pain tolerance...we have to be on high alert for problems.

Many have asked me what this surgery is all about.  Azlan was born with a severe, severe cleft lip and palate.  

Here is a brief recap of his story:

Moments after birth. The most beautiful face I had ever seen.  This cleft was known. The palate was not. The severity was not.  I...however...being a realist had googled every severe image I could fine and prepared myself for the most extreme. I was so glad I had.  He was here. Looked exactly as I had expected and I was completely...totally...fully in love.

Azlan Honor was here.


Meeting Zion for the first time. Yes, they are THAT close. 14m apart!

This photo shows the severity of the cleft.


Perfection. I love this picture.


This is him at 5.5m old. February 2007. Arriving at Children's Hospital for his lip and nose surgery. Can you now see why my heart was crushed to say good bye to this face? I had never seen anything so pure.


Moments after seeing him for the first time, post-op.  I cried and cried and cried. The nurse had to hold me.  I kept saying "that's not my son, that's not my son!" I truly could not see Azlan.  I was completely lost.  Where was my Azlan boy...?


 


Moments before his palate surgery.  July 2007.  





Post op palate.  He had a rough time.  Went from recovery to ICU.


The day we found out Azlan was completely deaf in his right ear. Something I had insisted on from when he was just hours old.  I really never wanted to be right...but I had a feeling..I was.


For extra cuteness. 


His second birthday. Such a beautiful picture of my boy.


Azlan's BAHA (bone anchored hearing device-implant into his skull for his deafness) surgery April 2012.



 So this is the last surgery to fill the cleft. The gap.  This is the gap in his jaw bone.  Bone removed from his hip (an ice cream scoop's worth) and implanted into his jaw.  This is round 2 of this surgery. He had it done in September and it was all removed 9 days post-op due to a bad infection.

This is critical for bone growth and teeth development.  

It is not the last of his surgeries. In fact, the orthodontist sat down with me yesterday to discuss the severity of his underbite. She said that as he's growing, it's worsening. And it can't get worse. So there is very likely a surgery on his upper jaw in the not-too-distant future.  And honestly...that's just the beginning on his jaw. And more reconstructive on his nose and lip.

And...this...? This is his journey.  It's not a mistake. He's not a mistake. He's not a statistic.  He is so perfectly made for a purpose.  We didn't pray God would heal him before birth. We knew. I knew he had a cleft before the ultrasound revealed it!  This is our story. This is Azlan's story.  Most importantly...this is God's story.  He's the author.  

And oh...God has an amazing plan for this boy.

You'll see.  

You'll see.







7 comments:

  1. One day his story will be in a book, and I want to read it as soon as possible. My heart breaks for the pain this lion hearted boy has endured, but my heart also swells with pride at the lion hearted strength God has given him as well as you, his parents. This is for the glory of God. I thank Him for you and your faithfulness. <3

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  2. Praying for a full recovery for your dear little boy!

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  3. Janice I had NO IDEA all that Azlan has so courageously faced medically! He is so very brave and what a sweet spirit your handsome young man seems to have! I will be praying for a recovery with NO complications and minimal pain! Hugs, Lori

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  4. Thinking of Azlan...how's he doing?

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  5. Just wanted to say hello, and let you know that I've prayed for you and your family, as you've been on my heart and mind. I hope your sweet Azlan is healing and progressing well. And that your other little people are also doing well. Thank you for your Christian example… and for sharing His story. Love from Tennessee… Selena

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