That's 1 One Way to Skip Monday's Follow-Up!

We made it home. Roughly 5 hours ago. I've been asleep since then. Oh, and I slept the whole way home from the hospital too. Should've called in a blog-sub to update you all, but I was already asleep before that thought crossed my mind. My bad. 

We were in and out in just over 4 hours...then, Chipotle because we aren't savages. Zane had some soup I snagged elsewhere for him, but that's not important. :0

Since our last update, Zane had taken this ninja-terrorist thing to a whole new level and was basically flinging himself off the moving gurney as we headed to the OR. Again, I asked for family sedatives...denied. Everyone had some memory-lane chuckles about the good ol' days of surprise erasers and the boys who love them. As they pulled away, I prepped them for the need of extra knock-out drugs. He was on fire. 

Everything actually went great, and they were in and out fairly quickly. They were able to widen the hole in the neck and simply pull back the skin to reattach the arm. They went ahead and did our cranking duties for the morning, with some extra to boot because I wasn't able to crank it with my finger last night...

Dr Fletcher said Zane was actually the second person to have this happen in all his years...bummer, "first loser", according to his big brothers since we weren't the first. Basically, think of a ball and socket mechanism. The arm basically had just worked itself out of the joint. He put some super glue :) in there, for good measure, so this doesn't happen again.

Perk: we don't have to go back up tomorrow for his follow-up! We will have to go back up the following Monday...to have the arm removed...the one we had to surgically replace today. Oh well...we really don't have much else going on anyway. It's all good. 

Tomorrow starts a full week of school. New lunch box is raring to go. Helpers are lined up. Teachers are prayed up. Here we go. Praying for nothing to report until next week! :) 

Gotta go for now. I'm ready for sleep. Again.

Hate to Say 'I Told Ya So"

"It's not possible," they said.

"Never been done," they said.

"It's basically indestructible," they said.

My response each time was, "Have you met Zane?" 

As I mentioned in my previous post, everything has been just peachy since the surgery. All except the attitude, the puking, the co-sleeping, etc. BUT overall...just peachy.

That is, until yesterday morning when Zane scratched his neck and felt dry blood on the metal arm of the distractor. He did the only responsible thing at the time...tried to get it off. And guess what?!? It fell off completely. OUT of his neck. The impossible happened. Shocker. Why doesn't anyone believe me? And he literally wasn't being crazy at all. None of his Zane-ness caused the incident. 

Bryce was actually home alone with Zane at the time. Big Z was parked in his recliner, playing the ipad and watching Wild Krats. Definition of chill...and learning...that show is legit.

"Uh, Mom...Zane's thing fell out of his neck. He scratched his neck, and it just fell off."

SO...I raced home and got on the phone with  the hospital. When I was finally put in touch with the resident on-call, she said the following...not even kidding...

"You should be able to just shove it back up in the hole and reattach it to the distractor. Just try it while I wait."

What. The. World.
Not. Kidding.

Because I'm not a quitter, I had Bryce hold the light, and I gave it the whole college/med school try...and failed miserably...all the while, we could hear the resident saying to another doc, "This should work, right?!?"

:0

A hour or so later, the resident that has been on Zane's case from the beginning called and talked through the situation. Zane's surgeon is out of town, but another doc is on the case. 
Unfortunately, we are going to have to do another surgery to reattach the arm. Because Zane had already eaten, we couldn't do the surgery yesterday. 

So here we are. Up at the U since 8 am, in the ER...waiting for the OR to open up. Could be 10 minutes...could be 4 hours. They'll have to put him to sleep again, insert the arm, and make sure it's all working properly again. We should be able to go home today though. That's a plus.

Who's betting on an eraser to make an appearance? 

Not making any promises.

1 Week Down...Many More To Go

What can I say...I had the best intentions, but that's never enough when you're dealing with our little patient...regardless, I'm sorry for taking so long to give an update!

Things have been going very well over the past week with Zane, with the exception of a few hiccups.

Zane was surprisingly content to chill out the first couple days post-surgery. He was actually living it up as he plopped himself on the recliner closest to the tv, surrounded by 20 or so of his most favorite "stuffies," the remote, cool books, the ipad, and a plethora of movies!

On Monday, we headed back up to the U for his follow-up appointment and cranking instructions for the distractor. Zane had been complaining all morning that he had a stomach ache so we shouldn't have been surprised what happened. 

But how prepared can you be for projectile vomit? I submit that you, indeed, cannot. 

Chris caught it in his hands...except for the vomit that went all over Zane's entire body, the exam chair, and the floor...yea, except for that part. Super duper. Daddy said it was likely due to meds on an empty stomach...well, too much of an empty stomach because Zane refused to drink all of his breakfast as instructed. Little pagan. 

After getting the low-down on our new crank duty and the updated timeline, we headed to the mall to buy our cute little puker a new outfit.  Chris got Z a CFA shake while I headed into Target with the patient. I won't go into detail, but Mama was in tears within 30 minutes. Not a proud moment, trust me...but the pagan turned into a terrorist pagan who hated all things and everyone. 

Hoping to turn the tide, we headed to Zane's choice for lunch...Olive Garden. The surgeons suggested smashing up noodles for Zane...as long as he doesn't have to chew, he can enjoy anything he likes! Easier said than done, we were happy to give it a try. 

At least Zane made it to the bathroom this time...that's all I can say about that. At least the adults enjoyed a nice lunch. We decided to forego the movie we'd planned and headed home. One more episode later a couple hours later completed the trifecta for the day, and I began to think this whole post-op was going to be the death of me.

Thankfully, Monday was an isolated event of awfulness, and we woke to a much-improved patient with no stomach woes and a blissfully-improved attitude. We were even cleared to start back to school on Wednesday, but we decided it was best to wait for Friday due to a conference Zane's teacher/principal were attending all week.  

The cranking process never even gave Zane any pain until day 4. Since then, it has given him a good bit of pain each time, but eventually wears off. (We are cranking the distractor twice a day, for a total of 1 mm total per day.) I'm assuming it's similar to tightening braces which causes throbbing and such. Still, Zane is a trooper and is handling it all like a champ. 

School went very well on Friday. Mama took one for the team and spent the entire day in the 2nd grade. :0 It was actually a good idea...although I immediately retreated to my heating pad as soon as I got home that afternoon...because I was able to see first-hand where Z will need extra help. Our original thought was that he would need constant supervision with the help of an adult. After my day in 2nd grade, however, it was clear that (at least for now), some HS helpers could handle Zane-duty for recess, PE, and lunch. We also spent some time explaining the surgery itself and the post-op info to the entire 2nd grade so they would not need to question Zane (something he really didn't want to happen) and so they'd also understand how to help Zane! 

Operation Keep Him Down is in full-swing...1 more week of distracting...2 more weeks of cup liquid diet...5 more weeks of non-active activities...and we're home free! :) 

It's all pretty incredible, isn't it? Such a positive and quick recovery! All was going great...until...the impossible happened. 

More on that next...

We're Going HOME

It's debatable whether we're heading home because Zane is ready to go...or if it's because Daddy was the only one in the room when the doctors all checked in this morning. 

Regardless, we're waiting on meds for discharge, as we speak! 

Very little sleep occurred last night...Mama forgot to take her medicine in our room, and in addition to the constant vitals/pain meds nurse checks, Zane decided he wasn't tired at 2 am so he told Daddy it was time to watch more movies. 

I shouldn't laugh. 
Don't laugh. 
Ok...give me a minute.

At rounds this morning, Zane got the all-clear until a follow-up on Monday! We won't do anything with the crank until then so the plan will be to lay low until then. 

He's already had 2 bowls of chicken noodle soup and a couple cartons of chocolate milk.

He is currently watching The Force Awakens while playing a Star Wars game on the ipad. 

Operation Keep-Him-Down has begun. 

Zane's Official Surgical Update

Before I highlight the details of today's surgery, I just want to thank you all, once again, for the outpouring of love and prayers you've shown Zane and our entire family! It has truly meant the world to all of us.

We reported to the University of Iowa this morning at 9:45, with a surgery time of 11! But as most things go at hospitals, Zane didn't get called back until 12:15-ish! It proved quite interesting to keep 4 teenagers, 2 parents, 1 grandma, 2 family friends, and a fiesty little ninja all happy while we waited! Mostly, we just planned where our next meal would be. We are simple people.

The first update came about an hour later from Dr. K! Because there's never a dull moment with Zane, the first thing she detailed was the extra procedure she had to do. 

To remove the foreign body. 

From his nose.

A pencil eraser, to be exact.

It has been in there awhile. 

It was even on the scan.

[It caused a blockage when they tried to intubate through the nasal cavity. So that plan had to be adjusted to go through the mouth/throat. She went in and grabbed that sucker for us so we could have a nice little chat with Z about that one.]

Not even kidding. 

What. The. World.  

The rest of her report seemed unremarkable after that first little nugget, but I might as well share that stuff too, since we're already chatting. 

After doing a significant scrapping out of the LEFT ear, she found the ear drum to be compromised. So she had to insert a tube on that side. The RIGHT side also had an enormous amount of wax build-up but, due to the super thick scar tissue in the ear canal, it had basically calcified over the past 8 years. We will begin putting ear drops twice/day to soften that up so that Dr. K can scrape that ear out next time he goes "under." Best news on this side, she did INDEED see evidence of an ear drum back in behind that mess! SOOOO...we will just have to keep praying for a miracle there! 

So, once there was a pencil...ok, moving on...

Dr. Burton had the bulk of OR time, dealing with Zane's jaw. Overall it went as well as could be expected, maybe even a touch better than he thought it would go. Everything went as planned...minus the eraser, of course...

I was a little surprised to see how much of the crank was sticking out of his jaw...and the placement. Remember that whole, "Out of sight, out of mind" reassurance? Kind of hard to back up that claim when it's a 1.5 inch metal tube hanging out of the front of his neck. Yea, so...

It was also not clear that he would have 2 incisions...one for drainage and the crank, the other is higher on the jaw line and is shut with derma bond. Honestly, I can't remember what that one was for. :/

It took quite a while to be fully awake and immediately wanted to mess with the crank coming out of his neck. Shocker. They prepared us that there would be a good amount of oozing and drainage, but that's definitely been the most surprising thing, in addition to the above mentioned issues. They're watching that a good bit and may be the determining factor in whether we get to go home tomorrow. 

He's also in a good amount of pain so they're trying to get that in check. Of course, that's to be expected...it's just strange to see Zane admitting it. 

I think that's a good adequate summary for today! Thanks again for your love and prayer!

Oh, and...Chipotle and HuHot...full circle blog post, for the win.

WHY WHY WHY?!?!

Hey friends! I promised to touch base with you on the WHY of Zane's surgery next week, here in Part 4 of Z-Day!

This surgery has nothing to do with the ear reconstruction...although the first appointment with his new ear doc will be the week after his post-op appointment in December! I can't even think that far down the road yet. Gulp.

This surgery also has nothing to do with the jawline or fixing the aesthetics of his face by building out the lower jaw on the right side. That won't be done until he's 18 years old when they would basically need to do an implant. Double gulp.

In the spring of 2016, when we were originally speaking to his ear doc about getting rolling on the reconstruction...he said based on the structure of Zane's face, we may need to see the other surgeon and deal with Zane's jaw first. SOOO...that put a hold on all-things ear-related, and we began the process of dealing with the jaw. Here's why:

The left side of Zane's face/jaw has grown as expected. The upper right side has also grown as normal. The bottom right has had no growth. So what is happening/will continue to happen is the left side will soon grow noticeably forward, while the right side will look as though it's just falling downward. Basically, the more time passes, the more deformed the facial structure will become. Obviously, it's better to try and curb that process before it gets too bad.

Again, that's the Eva-version of things that are way above my pay-grade, but I think you're able to pick up what I'm throwing down. 

So there ya go. Short and sweet! Just like Zane's Mama!!! :)

Post-Op...Translation: Total Shutdown for Zane's Life as He Knows It

These next couple weeks are already shaping up to be quite a blur so I wanted to go ahead and give the details for Zane's post-op so we might get some bonus prayers in there!! :)

For those of you that know Zane, you'll realize that this is where the rubber meets the road. This will be the hardest part for Zane, for his family, for the school, for the church...you get the idea. 

I mentioned in the previous post that we will have to stay at least one night in the hospital, maybe two. I'm just going to throw out all these other little nuggets for you to marinate on as well.

10-14 days out of school...which I did negotiate...not even kidding...down to a 7 day minimum instead. Just have to wait for our follow-up visit on day 6.

2 week soft food/liquid diet. No chewing of any kind. However, his jaw won't be wired shut, and it won't cause him pain to chew. Zane eats constantly. This will also include all the incessant chewing on non-edible items. This will be tricky, to say the least.

No recess for 6-8 weeks. No. Recess. For. 6-8 WEEKS. This is a show-stopper. A jaw-dropper. A game-changer. If you think that's overly-dramatic, you don't know Zane. Under this umbrella, they added the following:

No jumping.

No running.

No bouncing.

No rolling around on the ground or "running" on all fours.

No Zane-like activities.

No amount of time will allow the complete impact of that to sink in enough so we shall move on. 

There won't be any stitches that he might accidentally rip open or any way (SUPPOSEDLY) that Zane can damage the crank on his jaw. The bigger issue would be all the incidental contact with other children, flying soccer balls, falling down, yada yada yada. Since Zane throws himself on the ground all the time, just for fun...yea...someone is going to have to sit on his little self for 2 months. The surgeon said the hardest part will be that Mini Evil Knievel shouldn't feel much pain at all...not with the cranking, not with chewing movement, not much overall. While that's comforting for a Momma, the pain is also what reminds people to take it easy. He anticipates much frustration for Z because he will feel fully recovered in a couple weeks, but he will still need MUCH more recovery time. 

Sidenote. I found out today that Zane may also need to have teeth extracted if they believe it to be necessary. Dr. Burton had mentioned this a year ago, but it hadn't come up since. Originally, the thinking was that Zane's mouth was so small, we were going to need to pull some baby teeth so the permanent teeth would be able to come in unhindered when they were ready. Apparently, it may also be necessary for this surgery.

So...yea...

In a recent meeting with our school, everyone left with a desire to do whatever we can do to get Zane back in school, in spite of the limitations. However, as you can imagine, this will mean we need a fairy godmother to hang with him throughout the day to provide gentle, yet constant, reminders of this temporary new normal. He'll need separate outdoor time, special help at lunch, helpful reminders not to hang upside down at this desk, and on and on. There's really no other option because he struggles to control himself in the routine. When that routine goes out the window...and there's also no release for him by way of running around at recess...poor little man will be fighting a losing battle. As will his teacher, who's actually responsible for other little humans at the same time! :) 

If we aren't able to navigate those hurdles, my guess is that we will have to transition to some sort of home school, home care, home mental care...that last one was just for Zane's family...ok, just his Momma. Chris has always said we could never home school because we couldn't afford the therapy for them or me. Isn't that special? 

Anyway, I mentioned before that Zane will have to go back for a simple surgery to remove the plate after about 4 months and will be fully recovered in 6-9 months. In my mind, if we can just survive those no-activity 2 months, we'll be golden. 

Whew. I think that's probably more than enough for today. I also think the need for prayer in the recovery phase is fairly obvious. At some point, we should probably tell ya to just pray for some other crew, for Pete's sake...but for now, you feel free to just pop-a-squat right here. 

Part 4 of Z-Day will cover the WHY of his surgery. I'm pretty sure most people don't fully understand why this needs to be done right now...it may not be what you think! 

Just building suspense here, my people. Keep 'em wanting more, and all that. See ya next time! :)

Zane's Surgery...PART 2

Happy Saturday, friends and family! I'm sure you've had enough time to digest the ear-portion of Z-Day so I thought it would be good to share the more intense portion of the surgery!

The jaw surgery will actually be completely different than the original plan that included a rib graft. The surgeon is basing this decision on function over appearance. Even though there's been no growth on that lower right side, it somehow still seems to be functioning well. So this will allow for the less-invasive option. While it's obviously fantastic to be avoiding the rib graft, I'll admit it was pretty overwhelming to process the new plan for this 3-4 hour surgery.

Here it is...in Eva-lingo...

They will be cutting his jaw in half and will screw a titanium plate on the bone. There will be a crank that COMES OUT THE SIDE OF HIS FACE that we will have to crank twice a day. Without hesitation, I literally laughed out loud. Are you kidding me right now?!? And how exactly are we supposed to keep Zane from messing with it? Surgeon's answer: "With kids, it's just out of sight, out of mind! He'll just leave it alone!" More laughing out loud. I think they finally started believing me when I asked if there was any possible way for Zane to pull out the plate or mess it up in any way...because I ASSURE you, if it's possible in ANY way, Zane will do it. Regardless...still no answer to that one, won't be putting a giant bandage on it or anything, and won't even be wiring the jaw shut, for good measure. 

Yea. 

Back to the plan...we will crank it twice a day for 2 weeks or so. This will create a separation in the jaw where new bone will hopefully grow to fill the gap. This would most likely happen in "normal" kiddos, we are just praying it will also happen with our little man. (If this doesn't occur, we will have to revisit the rib graft idea.) The new bone will lengthen the jaw bone as it fills in the space created with the cranking system.

If all goes as planned, an added bonus would be that this new growth will be a jump-start for the jaw, and it would continue to grow on its own. (If that doesn't occur, we will have to repeat this surgery in 4-5 years.)

In 3-4 months, we will have to do a simple surgery to remove the plate/screws. Full recovery time will be 6-9 months. 

Some additional thoughts about the surgery: 

The biggest risk of the surgery will be permanent nerve damage. You may remember that Zane already has permanent nerve damage from his first surgery because the nerve did not regenerate after they had to weave the nerve into the sutures on his cheek when they closed up the "side cleft." This is why his smile isn't as wide on the right side now. The surgeon explained that people typically have 5 nerves that run down our face, and they are typically in predictable locations. With Golden Har kiddos, like Zane, there may be 3 nerves, there may be 9. They may be as thick as spaghetti noodles; they may be as thin as a single hair. They will also not be in any predictable location. In his words, "My Golden Har kids are just really screwed up inside." :/ There are just a lot of wait and see issues with this one. 

We also just found out that we have to stay overnight, one night...maybe two. They said we'd have to stay until we can handle the crank system correctly...and Zane is good to leave it alone. Super dooper.

What to pray for in this part of the surgery? Please pray for big, fat nerves in obvious places! Please pray that we can find some miraculous way for big Z to ignore these crank sticking out of his face. Please pray for bone growth! 

Post-surgical details are extensive and will be upcoming in Z-Day...Part 3!

October 19th...better known as Z-Day...Part 1

See what I did there...Z-Day...kinda like D-Day?!?

*crickets*

*moves on in wake of terrible joke-telling*

Anywhoooo...10/19...that's the big day of Zane's surgery! I thought it might be helpful to break things down into chunks...

(Hence the "Part 1."

You didn't pay attention to that, did you? 

All this grammatical prowess is wasted on the likes of you! 

FOR THE LOVE...Pay attention!)

...because there are quite a few moving parts for the surgery. The surgeons are attempting to make the most of Zane's immobility...no clue why that would be...so we are, once again, doubling up on surgeries!

Let's start with the "lesser" task of checking out the ear/s. This is NOT the ear reconstruction...this is checking out what's going on inside the ears. We had a bit of a surprise to learn that the "good" ear is getting some attention as well. 

According to the surgeon who's been leading the charge with all-things-Z, Asians tend to have heavier wax build-up than Caucasians. Is this true, my Asian peeps? Regardless, she has had to scrap out a significant amount from his good ear at every bi-annual visit over the past 4 years. He's also had a couple concerning moments with fluid in the good ear...the primary concern being that if something happens to the ear drum on this side, he would suddenly be completely deaf. Dr. K said she really needs to scrap his ear out significantly to make sure the pressure of the wax and the extra fluid isn't causing his ear drum to "cave in." (That's Eva-translation.) It hadn't looked great the last couple times we were up for a visit, but she needed to wait and scrap it out fully while he was under anesthesia...no clue why THAT is! :) She may have to place tubes but won't know until she gets in there. Again, the key here is that this is his only functioning ear at this time. 

Nub-side...as we affectionately call it...is a little more straight-forward, yet still interesting! Under anesthesia, Dr. K will attempt to "open up" the ear canal that runs down the side of Zane's face to see what she can actually see about the inner ear behind the nub. This could also only be done while big Z was completely immobile! Wouldn't it be a kicker if he ended up actually being able to HEAR on that side?!?! Crazy stuff! 

But wouldn't that also be just like my God to show up in the impossible?!? 

That's all for Part 1...next up, in Part 2, we'll cover the more intricate jaw surgery. 

As always, we appreciate each and every prayer!

Our Little Ninja Could Use Some Extra Prayer

I'll be the first to admit...the proverbial ball was dropped on this crazy ride, and since I was the once running the ball, well...let's not get bogged down in the little details.

I'm committing to posting consistent updates from here on! OK...I'm going to give it the ol' college try to stay current! Whatever, man...read away whenever a random post appears! Keeping it real.

Getting back to big Z...his next surgery and all those details really will be forthcoming in the near future, but for now, I just wanted to share some struggles that we've been having, leading up to these next steps.

Zane has been talking about Zoe and her death quite a bit over the past 6 months or so. If you know Zane well, it may surprise you to hear that he pauses long enough to have such profound conversations...in actuality, he drops these show-stopping bombs and then moves on to the typical, "Where is Dad...what's for dinner...can I watch tv...can we play the animal game"

...and on and on and on. So it really is challenging to try to navigate his true feelings and emotions concerning the whole thing. However, there is one reoccurring theme as of late, and this is where this momma could use some prayer for her little man. Here ya go...

"I don't want to be old when I die. I want to be young when I die...just like Zoe...If I don't die soon, Zoe won't recognize me in Heaven. She won't even know we we're friends...Can we reverse our age in Heaven? Can God do that so Zoe will know who I am...I hope I die in my surgery so I can go be with Zoe, and she will know who I am...I will know who Zoe is, but she won't know who I am if I don't die soon...I hope I die soon." 

Yea. I'm done. 

Then you have the following sprinkled in there: "Why did God want Zoe to be in Heaven with Him more than with me...Did it hurt Zoe when she died...I hope it doesn't hurt when I die in my surgery...What if I don't wake up from my surgery..." 

This is truly the definition of an

I. Can't. Even.

moment. 

Just so you know...we've talked through every statement when possible. We've talked about how much we'd miss him. We've talked about the glories and wonder of Heaven. We've talked about no pain and suffering and tears...all. the. things.  But the reality is...our little man is wrestling with these life and death issues in general, mixed in with still being torn up about his best friend.

He could use your extra prayer. We could use your extra prayer. He knows so many people love and pray for him. He loves that...and so do we. And we are so grateful.