Wednesday, November 22, 2017

Still.....

As we surrounded ourselves with family this week, it has occurred to me that I'm yet again behind on the Z-man's latest update! I think we can all agree that this will never change so I'm just going to stop apologizing for it!!! Suck it up, Buttercup...and all that...but, yea, no...sorry about that.

When we last met our hero, we were finished with the cranking process and simply waiting to remove the metal arm from his neck. Daddy actually made the trip back up to the U this time...the constant trips have definitely taken a toll on the one who shall not be named. I instructed the hubs that he was responsible for pictures, all the info, all the pertinent questions, all the things. He passed...but not without mocking me for even WANTING pictures! Who is this man you've given me, Lord?!?

The removal went without a hitch, but we did have a couple surprises. Here ya go:

*Still on soft foods. For the LOVE. Until his next checkup on Dec. 11th. Zane was less than thrilled, poor guy. He's already got his meal list rolling for Dec. 12th, if all goes well. (This means, of course, that we even brought "Zane's food" to Indiana for the holidays!)

*Still on very low activity restrictions...again, until his appointment on Dec. 11th. This is the trickiest stage, as you've guessed. No metal arm protruding from the neck. No painful cranking to remind him he just had surgery. Feels fantastic. Except that whole...your jaw is SUPER fragile right now and could, ya know, basically SHATTER if it's gets hit in any way. Well, there's that.  So, we continue to watch him like a hawk and pray for that bone to grow quickly and grow strongly. 

Zane's next surgery is in April to remove the plate and screws. This will be an in-and-out kind of deal and won't require much, if any, recovery or restrictions!!! YAY for that! 

His next dr appointment will be Dec. 4th or 5th to follow up with Dr. K on the tubes she put in the right ear. Hoping for "uneventful" on that one.

Something to note...I mentioned his followup is Dec. 11th. On Dec. 15th, we meet with his ear doc to come up with that surgical plan. Zane will want this without delay. I'm hoping they'll decide to do it next summer, but we shall see!! Crossing all my fingers and toes and whatever else I can find! :) 

Happy Thanksgiving to all and, to all, a good night!



Friday, November 10, 2017

It's the Sleep Deprivation

How did I lose track of the past 2 weeks?!? It's just kind of a blur so I'm claiming lack of sleep...that's basically what I blame most of my issues on. 

*Writes that as she begins this post at midnight. Hmmm...*

Regardless, I wanted to update everyone on Mr. Zane, post-surgery #2! He's actually been doing fantastic, both at school and at home. He's has been a trooper to eat tomato soup or mashed potatoes for every meal, and has still been doing a great job taking it easy in his spare time, and has had some great HS helpers for less-structured times as school. Short of the time Zane took advantage of his student helper when he started jerking his head up and down while saying, "I'm not supposed to do this!" :/ Yea. No need to enroll in Punk 101. 

Other than that, he's been the perfect patient. The daily cranking has been incredibly painful, as opposed to the original assurance of pain-free activity. Chris made the trip up to the U this past Monday for Zane's final checkup...so naturally, there's not as much meaty info to share...just the bare bones with this guy. All was well but, unfortunately, the jaw had not moved enough in the 2 week process. SO...we had 3 more days of cranking, much to Zane's dismay. 

However, to his joy, we are now officially done!!! We will go back up to the U on Monday...again...to remove the metal arm that sticks out of his neck! The hole will close up on its own soon after. Then we just try to continue on with Operation Keep Him Down! I'm anticipating the difficulty increasing once he is able to move more freely. 

He has now graduated to soft food...as opposed to liquid-only...so he's been happy to enjoy some eggs, mac n cheese, etc. We will still have the diet restrictions for another week or so, and the activity restrictions will still stand for another month or so. 

Still very thankful for the continued prayers and special gifts for Zane in his down-time! He can't believe how much people care for him! We agree. 

Sunday, October 29, 2017

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.



Saturday, October 28, 2017

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...

Friday, October 20, 2017

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. 

Thursday, October 19, 2017

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.