Monday, January 15, 2018

Momma's Turn

Thought it was high-time to give a little update for yours truly...if you're just here for the Zane sagas, just move along...nothing to see here. 

Honestly, I have had no desire to document all the issues with my own health lately, but since many have been asking, I thought this might be the best way to bust it out and then drop it! :/

Seriously, though...for real.

Back in March of '17, I suddenly had severe pain in my left shoulder blade/elbow...much like I did 10 years ago. 

To quickly rehash...I woke up one morning in September of '09 with an extreme pain in my left shoulder blade. I could barely breathe and couldn't even sit up straight. Some of you will remember, I ended up having a copious amount of treatments (including traction, PT, injections, and nerve blocks) and multiple surgeries over the course of 2 years to deal with the nerve damage. 

The cause? That pesky little getting-tackled-by-the-football-player incident back in '95, 15 YEARS PRIOR . Still on the lookout for that little punk. 

(The elbow nerve damage was caused by the air bags in several car accidents. That's a story...stories...for another day...or never.)

Regardless, when the dust settled...right about when we moved to Iowa in 2012...I had a metal plate/screws in my neck along with some minor scars, but I was finally able to reenter the land of the living! There were certainly "flare-ups" over the next 5 years, but they would settle down after several days of taking it easy, and I've been able to be very active and even found myself running...something I swore would only ever happen if someone was chasing me!

Until last March. Felt like we were back to square one...although the pain was located in a slightly different spot...it was definitely nerve-related and intense. 

I had to stop working out completely. I went the obvious route of chiropractic, PT, injections, and medical but eventually found myself sitting across from another surgeon...something I've been trying to avoid ever since. After more scans, he said I had more nerve compression on both sides, one level down, and would need to do 1 of 2 surgeries: a double fusion (removing the old and replacing it with an elongated version) or just doing a nerve release on the left side (although he was convinced that I'd be back in a year to do the right side if I chose this option). 

A few months down the road, I found myself no closer to any decision/answer so I decided to head up to Iowa City to a specialist. Much to my surprise, the new ortho surgeon said there just wasn't enough information to make an educated decision. Thus began a whole slew of testing...of the extreme nature, if you ask me. Lumbar puncture, EMG, nerve blocks, etc. All felt like it might be the last of me...somewhat dramatic, but not far off. 

The lumbar puncture had me hanging upside down, strapped to a table, while they injected dye into my spine...then being monitored for 4 hours to watch for seizures. Much screaming, and head exploding.

The EMG is just brutal...my 3rd to-date. Just ewww. I asked them to zap Chris too, but something about "do-no-harm"...they must've missed that memo on me!

The latest nerve block, which was just before Christmas, found me unconsciously screaming, crying, and shaking. Yea, super-duper. 

Funny story...while this was happening, one of the nurses started rubbing my leg...

PLEASE STOP THAT, I heard "someone" yell. 

Then..."Do you want to hold my hand?" Excuse me, what?!? Who does that? 

NO...DON'T TOUCH ME! 

I did hear myself yell, WHAT. IN. THE. CRAZY. WORLD?!?! 

"It's ok...you can cuss in here. No one cares." 

I THINK I JUST DID!!!

As in most difficult circumstances, it's worth it to endure once you come out the other side...because you find the golden goose...ANSWERS. Unfortunately, that is not the case thus far. I'm super grateful for the wisdom and care up at the U, but I'm not any closer to an answer. 

The surgeon accurately discounted the original surgical impression so that was great news. The new herniation and compression was not herniation and very little compression...it was a skewed MRI result, showing the screws from the first fusion...NOT a new major issue at all. There's some compression issues, but nothing enough to cause this much pain. Each new test was done to rule out surgery. It did not rule it out, but it also didn't guarantee success.

If I were to insist/request moving forward with surgery, it MIGHT work. However, the odds aren't promising. There's a possibility of 10% improvement. Could also be 80% improvement. Just not likely. Honestly, I'd be willing to roll the dice on another surgery if it was likely to be a 50% improvement. I'm not even close to pulling the trigger on 10%. 

SOOOO I'm off to a shoulder/elbow specialist this week to see if he can find any issues that might be causing the pain, unrelated to the neck compression.

If you're putting 2 and 2 together, this has all been going on simultaneously with all Zane's surgical procedures so that's been the biggest difficulty of all. Between the 2 of us, we've been up at the U twice a week since September. 

I need a nap. 

So there ya go. Consider yourself caught up! We're still plugging along. Trying to stay upbeat and positive, but also fighting against discouragement almost daily. As always, we appreciate every prayer and know that we are grateful for overall health and well-being in spite of these minor setbacks! 

OK...back to your regularly-scheduled programs. Don't mind me as I fall apart daily...aren't we all? Mine just tend to be more obvious! :) 

Oh...and I still don't want you to rub my leg or squeeze my hand. It's all good. 

Seriously. Just throw me a fist-bump. I know you've got my back. 


Saturday, December 23, 2017

Decisions...Decisions...

It's hard to believe, but the time has finally come to address the one issue we were aware of when we first met our little man...the ear...or "nub" as we affectionately call it.

We had our initial appointment with his new ear surgeon last Friday. (Remember his old guy ABANDONED us last year. To move to Utah. To start a private practice. Whatever, man. We don't hang out with quitters.) Where was I...oh right...new guy.

Dr. Owen walked me through the various options as I tried to keep Zane from swinging from the rafters. I usually have my trusty Dr wife (don't laugh...we've had something interesting conversations!) or my actual hubby to help interpret/remember all the details AND corral Zane. This time, I found myself alone for the most intricate discussion since we adopted the 2 kiddos. Me. Details. And all of this was while Zane was literally hanging from the light and checking my vitals and the whole nine. **sigh**

I'll do my best to give you all the run-down, realizing that Chris and I haven't had even a second to have the conversation it will take to make this decision! One thing to note with all of the options below, except #1, is that the nub will likely be removed completely. This is actually different than previously discussed but understandable. Just something else to process for Zane.

Option 1: DO NOTHING. We were actually tossing this option around 2-3 years ago. Zane was completely oblivious to the nub and didn't seem bothered by it in the least. Fast-forward. Zane is now very self-aware and is constantly asking when he can get his ear "fixed." He doesn't like to have people ask about it at all. Even though he understands that kids are curious, he takes it as "mean" when they whisper about his nub to their parents or each other. (He's not imagining that either, as I recognize it happening often...but I've rarely seen it happen with malicious intent.) In spite of our reassurances, he's even to the point now where he doesn't like to go new places where people will see him for the first time. So...option 1 is off the table.

Option 2: PROSTHETIC EAR. This was never mentioned before, but I'm not sure this would be a good fit for Z. No pun intended. They could attach the ear with internal magnets or posts, much like a hearing aid.

Pros: Not surgical. Don't have to worry about blood vessels, ear canal, rejection, recovery time, etc. It would also be the most realistic-looking, as they're able to match his skin tone exactly...as well as the shape, texture, and thickness of his left ear.

Cons: It's removable. It's fragile to the degree that China could chew it, Zane could take it off at-will and do no-telling-what with it. Could traumatize entire soccer teams when it falls off during a game. You get the idea. The surgeon said we could get an extra...we'd need 20. 

Option 3: RIB GRAFT surgery, combined with existing tissue from the nub, to reconstruct a new ear.

Pros: Established method that has been around "forever." Uses all of Zane's own bone/skin/tissue so there's very little possibility of rejection. There are 3 variations of this surgery so we're able to choose the one that would work best for Zane's case.

Cons: Regardless of which of the methods is chosen, the rib graft plan would actually be 4 different surgeries, separated by about 6 months each. That means the whole process would take almost 2 years. :/ He would also have a pretty significant scar on his rib as well as the recovery-time doubling. The rib-graft ear is a good bit thicker than his natural ear  because it's not possible for them to match the thin, yet flexible composition of the natural ear. It could also discolor a bit over time. We have to be concerned with blood vessels, misplaced ear canal, etc.

Option 4: MED PRO ear. This is basically a plastic ear that is created to mimic the existing ear, covered in skin grafts from Zane. These would be taken from under his arm, behind his ear, his hip, etc. This is very polarized option...doctors are either for or against it...no middle ground.

Pros: It's a one-time surgery. The plastic is more sturdy and is easier to shape into the more realistic imitation of the other ear. No rib extraction necessary.

Cons: It's the "new kid" on the block since it's only been around 20 years. I can only assume that the skin grafts would require some healing time. There is a potential for extrusion...the plastic could pop THROUGH the skin at some point. Very rare, but still a possibility. 

So...yea...there they are. 3 completely different options to choose from...piece of cake. 

He literally said Chris and I needed to google all the options...for real, GOOGLE...and decide what we think we want to do. 

In addition, there's the timeline. I asked Dr. Owens how far out we'd be looking at, once we decide what to do. He said he thinks it should be done as soon as possible, given his age and growth. When I asked if that could be as soon as next summer, he said he would say it could be late spring, at the latest. :0 So basically...Zane gets the titanium plate out of his jaw in April, it heals, and then we do the ear. Again... :0! 

In the meantime, the doctor will be discussing Zane's inner ear with Dr. K. He's not sure why that hasn't been part of the conversation yet...as that will determine how they proceed with whatever decision is made. If there's a potential that Zane could hear one day, then we need to salvage the existing ear canal, navigating around it and avoiding it at all costs. If that's not a possibility, regardless of what we do, then they will just "obliterate" the canal and save a lot of time. Pretty big part of the decision-making process.

So basically...no big deal.

Lots and lots...oh, and lots...of decisions to be made and prayed over! We appreciate all of you that choose to join us in that!  

Friday, December 15, 2017

December 11th...the day of Chick-Fil-A goodness

Well, hello there! 

I know you've been eagerly awaiting for the update about Zane from this past Monday! October 18th...that's the last time big Z ate with the rest of the family...since then, his belly has been filled with the following:

Tomato Soup
Mashed Potatoes
Yogurt
Cottage Cheese
Applesauce
Ice Cream

Then a month ago, he graduated to:

Mac 'n' Cheese
Ramen Noodles

Since October 19th. Yea...I know, right.

SO you can understand why Zane had a literal countdown going on in his room...on a calendar...X's and all. He also made his food list in order of importance:

Shrimp (tell me about it)
Pizza (sausage for the win...Mazzio's please)
Hot Dog (definition of "can't even")
Meatballs (who wouldn't)
Potato Chips (need to CRUNCH)
Doritos (there's a difference, people) 
Tacos (because we've raised him right)

With much excitement, Z and I made the familiar trek up to Iowa City this past Monday. Without much drama, he was given the all-clear to eat what he wishes...taking a little care to not go too crazy with hard stuff initially. As you can imagine, he was pretty stoked. 

There was some bad news, however...he will still be on activity restrictions until mid-January. It's all about avoiding the unpredictable...the stray soccer ball flying into his face, the tripping/falling and smacking your head on the ground, the things you never see coming that have Zane's name written all over them. 

So you can continue to pray for the little man and his friends and family in that regard. All is going great, and he has healed incredibly well...we just need to dig deep for another month and KEEP HIM DOWN. If you know Zane well, you know how difficult this part is for him!

No RECESS.
No P.E.
No PLAYING OUTSIDE.
No RUNNING, JUMPING, FLIPPING.
Not even WALKING THROUGH THE HALLWAY ON HIS OWN.

Since October 18th. He's done with the whole deal. So please continue to pray for that and praise God for all He's already done for Zane throughout this whole process!

Surgical ear appointment was today...and so we begin the new path to the next surgery...but that's an update for another day! :)

To celebrate the "half all-clear," we headed to the mall to grab some food. On the top of Zane's list? Hot dog. Wish I were kidding. But the poor guy hadn't eaten solid food (let's use that term loosely in the context of eating a HOT DOG) since mid-October so he gets what he wants in this little scenario. 

Side-note: I pinky-swear I did not deliberately sabotage his deep longing for the not-really-food top choice, but I did go to Chick-Fil-A. For a hot dog. They sell chicken. The one meat NOT thrown together in a hot dog. Oops...

BUT the poor little guy was literally DROOLING over something to put in his mouth so he declined moving to a different restaurant and happily took a cookies 'n cream shake in place of the hot dog. Not raising a complete imbecile. Needless to say, big man scarfed down some nuggets, waffle fries, and that shake in a matter of minutes! 

Let's see if I can distract him quite as easily when he wants to go outside and play...hey Zane, how about another rousing game of UNO?!? 

Better yet...just go grab some Doritos, dude. 

All will be well.

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.