Thursday, July 26, 2018

Whole Lotta Nothing

So sorry for keeping you all waiting to hear an update on Super Z! We've actually had two separate post-op appointments since we last touched base, but there's hasn't been much noteworthy news. Regardless, I wanted to share what's been happening since we are unplugging for a little while around here! :)

The first post-op appointment held some surprises for us because the surgeons decided to jump forward a week and go ahead and unwrap/unpack the new ear! It was fairly uneventful, as far as Zane was concerned...but pretty much mesmerizing for his present fan club!! The only thing that caused him any pain/discomfort was the clipping of the stitches that were holding the pink mold to his scalp. For some reason, that pushed him too far...not the staples being removed, or the massive amount of packing removed from both the inner and outer ear...just those tiny little stitches!! :/ 

Dr. Owen was pretty happy with how the ear looked and repeated consistently that it will look like a potato for awhile longer until the swelling goes down. Dr. Hanson was equally excited to get a look inside the freshly created ear canal, and Z thought it was pretty cool to watch him unpack it on the magnified big screen. Although he didn't expect to have any positive results that early, he still attempted to check his hearing with the tuning fork. 

No luck just yet, but we did have a funny moment to lighten the mood. After attempting the tuning fork on the bone, Dr. Hanson moved it to the ear to check that ear again. When Zane still couldn't hear anything, the surgeon said, "Well, I probably dampened it too much by now." Zane took in a very loud GASP and said, "We don't say that word!" The residents in the room began turning purple as they tried to stifle the laughter...the surgeon looked clueless...and, as usual, the mom was left to try to explain to the child. "No, buddy...he said a different word." "I HEARD him, Mom...he said (in a very exaggerated and loud voice) the word he accused the doc of uttering. The surgeon starts stammering. The kid starts yelling. And the mother is trying to pull out Webster's to expand the 3rd grader's vocab...all the while arguing with said youngster that the doc said "DAMPEN!! DAMPEN!!!" Go ahead. Get it out. But I might go all Chuck Norris on the next person that walks by me and shouts "DAMPEN!"

In short, we have an ear. That looks like a potato. That is currently unable to hear DAMPENED sounds. 

Thankfully, the skin grafts have healed significantly so Zane is almost pain-free! That's such great news, but it does pose the new problem of keeping him calm and chill. So please add that issue to your prayers!

Zane also started week 3 in his own bed. He wasn't happy to move back, but he was evicted from the buddy system when Dad returned home from a week-long trip to CO! Life is hard. :/ 

The second post-op was pretty useless, but they were primarily making sure none of the composite had broken through the skin graft...to which all looked good. They were concerned about the "crustiness" of the ear so we just need to keep it moist constantly. Besides the antibiotic, that's about it! We go back in a couple weeks...which will be roughly the 1 month mark! 

Once again, we thank you for all the prayers, the meals, the calls, the activities for Zane, and all the many other thoughtful ways you've reached out to us this past month. We are so thankful for each of you! 

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.

Another One Bites the Dust. Tonsils. It's Just Tonsils...For Now

  Welcome back to The Carr Ride. I mentioned the "bumpy roads" when you jumped in so I'm sure none of this will surprise you.....