Saturday, July 14, 2018

The Roller Coaster of Recovery

When we last saw our hero, we were high-fiving every person we knew...and some we didn't...about the incredible potential outcomes of this past Monday's ear reconstruction. Too much great news to repeat so if you missed it, just stop reading now and do a quick read-through of the last blog posted. For the rest of you who weren't slackers, here's a post-surgical update. 

Honestly, it's pretty unbelievable that we are only 5 days since the marathon surgery. Again, major props to Zane's incredible surgical team. But the real endurance challenge for us was what's happened since we left the hospital on Tuesday...feels like weeks.

I elected to hold off on this update until we could catch our breath...but I'll go ahead and do it now regardless! :/

As always, Zane is quite the trooper, but it's definitely been a much-more difficult process than his previous surgeries. The graft behind his ear doesn't seem to be causing him much grief, but the other two across his hips are giving him significant pain. The incision runs hip-to-hip. Yikers. I've elected not to share pics publicly (for Zane's sake), but I've taken quite a bit. It's rather shocking, but it helps see the big picture when things feel like it's not getting any better.

The second major issue was that the hospital only sent us home with ibuprofen and tylenol for pain, along with his antibiotic...even though some stronger pain meds were included in his discharge papers. Once we figured that out, it's been much easier to control that extreme pain. The worse part in regard to pain is that it hits him very hard at random times, unrelated to his meds. 

Bath time. You feel free to imagine all sorts if insanity...you'd just about hit the mark. There was screaming, weeping, and gnashing of teeth. That poor kid was covered in dried blood, and half a head of hair. He was less than thrilled. "What did they do to my new haircut?!?"

Saving the best for last, the most trying element of the recovery is that Zane has been waking up 5-6 times every night...which means we haven't gotten much sleep either. Chris has slept with him the past few nights...tonight is my turn. Fabulous. It's pretty tricky keeping the plastic cone and strap in place...he pulled it off completely last night. :/ 

How's that for Debbie Downer?!? Sorry...transparency is kinda my thing. I will say, however, that he's doing great overall. The pain was significantly lessened today...to the point that I had to stay on Zane continually to stay calm. I know...laugh out loud. It's cool. 

The only thing more hilarious would be if you saw what Zane's been wearing...and not wearing...in order to deal with the pain. Don't ask. Please. 

We will head back for a post-op appointment next Tuesday. The plan that day will be just a peak and chat with the docs and the setting of the second post-op the following week. We were able to remove the compression wraps yesterday, but the rest of the wrap and inner ear packing won't come out until that second visit. Zane will have to wear the cone 24/7 for roughly a month...and will need to continue to wear it at night for another couple months to protect it while he's sleeping. 

Please pray for pain relief as well as wound recovery. The biggest request Chris and I would have would be for encouragement for Zane. He's pretty down in the dumps and is really struggling with the whole deal. We would so appreciate your continued love and prayers. :)



Monday, July 9, 2018

15 Hours Later...

To say this has been a long day would be the understatement of the decade. However, I promised to post an update as soon as possible so I'm sharing what I can while it's fresh in my mind.

We just spent some time with Dr. Owens, as he walked us through the long surgery. He actually showed us pictures of each stage of the surgery. Yes, I asked him to take them...gotta have pics for scrapping...right, Renee?!? They were pretty incredible to see, although I don't think Cori will be thrilled to see what they did to Zane's sweet haircut! :/ Neither will Zane, for that matter. But I digress...

In spite of the increased length in time, the surgery went very well, and Dr. Owens was very pleased. Zane did make the situation a little tricky as his Golden Har blood vessels weren't located where they should've been! Never a dull moment with this guy. 

Dr. Owens was buzzing through the breakdown and sort of glided over Dr. Hanson's portion of the surgery. I had to stop him in order to clarify...excuse me, did you say he created/enlarged the ear canal?!? Why would he mess with that if Zane has no hearing on that side? WAIT...WHAT?!?

You best be sitting down. Turns out...God shows his handiwork even after 15-hour surgeries, amid all the doubts and fears of some of us...ahem...ok...that was me. So...here it is...Zane's ear canal was in the wrong place, clogged over with dead skin and scar tissue, BUT IT WAS ACTUALLY CONNECTED TO THE EAR DRUM! What the world. Dr. Hanson enlarged the canal and cleaned it all out, but it looks good on paper. Now we just wait. It will be a good chunk of time before we know if he can hear on that side...fluid must drain out, swelling go down, etc. But still, I am so overwhelmed by God...mostly that in spite of my own faith struggles throughout these surgeries with our China babies, He still has got it all planned out and is in constant control. 

We have a long road to recovery...they'll take out drainage tubes tomorrow and make sure he's ok with nausea and stomach issues. Then we will have a pretty significant dressing of multiple layers for a couple weeks. The first compression layer will come off in 3 days, the rest will follow. We will not see the ear for a couple weeks and, even then, Zane will wear the dressing for roughly a month. Then continue to wear it at bedtime for another 2 months. But, like I said, Dr. Owens said it all went well. The nub was enough to create the ear lobe. They had to do 3 skin grafts...2 for the ear, 1 for the enlarged ear canal. He wasn't able to create the tragus but can do that easily with a future procedure once the ear is good-to-go! 

It's been an hour since the surgery ended, and we are still waiting to see Zane, but we are rejoicing in this phenomenal news and knew you would be too. Maybe I can even get those pictures and share them with you sometime...well, those of you with a strong stomach! :) 

New Ears, Swimming End, and Old Wounds...how's that for a title?!?

So much for my promises to keep everyone updated on the adventures of Zane and his old mother...good intentions with no follow-through. Story of my life.

This may sound silly, but I realized I've avoided "The Carr Ride" because the last time I was actively sharing this journey with you all, I was also praying fervently for God's healing power for our sweet Zoe. That's an odd connection in my mind, but most things going on in there are odd so...moving on...

I will spare you the Eva updates for now...the good news is that we found some temporary solutions that are allowing me to, at the least, avoid surgery for the time being. Bonus.

Since we last had a good chat, we were trying to decide what direction to go with Zane's ear. We had the distraction surgery in April, removing the titanium plate and screws. The process worked well, and we got 15 mm of new bone growth on the right side. Actually worked so well, they couldn't reach the upper screw through the primary incision...ended up having to go through Zane's cheek to remove the screw. Scar number whatever...in case you're counting. Next jaw surgery won't be until he's an adult...if at all. There's a small chance that the bone will continue to grow on it's own, now that it's been spurred to do so. (Texas analogy for the win.) It's not likely, but that would be an awesome side effect of the awful cranking process he endured this past year.

In meeting with Dr. Owens this past spring, Chris and I decided to go with the MedPor plan. We went in leaning toward the prosthetic ear but quickly changed our mind. He said Zane would have to have a new one created annually...just due to wear and tear...would not retain it's coloring or be able to look good over time. An annual redo didn't sound like a good longterm plan.

When he began to describe the rib graft surgeries, Chris stopped him mid-sentence as the reality of losing 3 ribs and gaining a chest-wall deformity, in exchange for the ear, was absolutely not an option in our book.

SO...MedPor it is...and that's what happening as we speak. You heard me. We are currently on hour 2 of the 13 hour procedure.

Gulp.

Some of you may have seen small updates via good ol' FB, but you may not know the gist of what's happening...which is just CRAZY given the fact that I'm such a great communicator. :/ For those of you that fall into that category, here's the basic run-down:

Zane got a sweet new haircut (thanks Cori!) in preparation for his new look. Regardless, Dr. Owen and company will shave the right side of his head and make an incision in the top layers of skin. (remember we dumb things down for Eva around here) They've created an ear from a polyethylene mold. It has small holes all over in which they will weave the blood vessels through. They will remove the nub, using it for more cartilage and also to create the ear lobe. Once in place, they will cover the ear with skin grafts from various areas on Zane. Matching his skin tones will be pretty tricky, given his ethnicity...even more dicey, given his extreme tan after swimming non-stop the past couple weeks. When I jokingly asked if it would look like a patchwork quilt, the doc said, "Yea...that's basically right." Ummm...ok then. Not so funny anymore.

Also, the inner ear surgeon, Dr. Hanson, will also go in mid-way through the surgery to clear out debris and scar tissue to see if that miracle of an ear canal is actually connected to the ear drum. Again I'll say, wouldn't it be incredible if he ended up being able to hear from the new ear?!? It's not likely, but God has done amazing things in the lives of our 2 China babies. You just never know...

That's the basic gist of what's happening. The surgery is scheduled for 13 hours so we're in for the long haul...taking turns running around town to keep us sane. Zane is pretty excited yet still obviously nervous. In his words, he's "50/50."

Dr. Owens explained that there will be a pink mold stitched to the scalp that will cover the ear completely, giving it time to heal. We won't see the new ear for 10 days...so, no...I will not be sharing pics anytime soon. Give it a rest. Also, no...I didn't tell Zane it was going to be pink. There's only so much drama I can deal it on any given day...that would've pushed me over the limit. Mother of the year...whatever man.

His biggest concern last night...besides not getting food this morning...was that people wouldn't recognize him in China when he goes back one day..."they just remember my nub!" :( I assured him that people don't even think about the nub most of the time...we just love his fun personality and his sweet spirit! That's what will last forever in memories of Zane...not some misshapen cartilage and skin tissue.

Zane sincerely loves and appreciates all your prayers and well wishes. He made me read every one to him last night and proudly told his Baba just how many people were praying for him today. :) We're gonna let the boasting slide this time.

Please continue to pray for little man...as this effectively ends his summertime activities of swimming and hard-core outdoor playtime. Pray for quick and effective healing. Pray that we won't have any rejection of the new ear, as the mold could potentially "pop through" the skin. Yikes...is an understatement. Pray for our family that we will be patient and kind as we cater to our little patient.

And if you are so inclined, please continue to pray for this weak momma...who still struggles with the loss of our sweet Zoe. It's not abnormal...I'm aware...but it still knocks the wind right out of me. Maybe there will be more of sharing that struggle some day, but today is about Zane.

He knows he is deeply loved. He knows God is the one who ultimately cares for him. He longs to belong, and he loves his tribe. The cool thing about Zane Christopher "Jai Hai" Carr is that if you've ever even smiled his way, you're in that tribe. He welcomes everyone, without exception. Another thing I admire about this strong little man. If anyone can endure this challenge, it's Zane.

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!