Tuesday, October 29, 2013

If I Thought Last Week was a Rough Start...

I guess since it's nearly Halloween, the sight of John's eye nearly falling outside of itself could be classified in my head as some sort of of amazing zombie costume.  But, since there was no mask involved, I have a feeling getting a look at his eye when he was finally able to open for it a millisecond in the office at OHSU on Sunday, will be an image I'll never be able to forget.

Let me back up by reminding everyone what happened just over a year ago.  This post chronicles the adventures and reasons why he ended up getting a cornea transplant at the Casey Eye Institute at OHSU.  It was a successful transplant and healed so well, that a week ago, they opted to remove the stitches.

So, we took Whitley with us, not expecting much more drama than one might expect from a wisdom tooth removal (conscious sedation only).  It took longer than expected, but that was mostly because they were running behind in getting him in.  The one big concern, though, was that John's expert cornea doc, Dr. Faunfelder, asked if he would allow his resident to remove the sutures under Dr. F's supervision.  As it is very much a "learning hospital", John said "yes".  While we have no evidence to suggest this resident did anything wrong, it lessened John's confidence in how it ultimately went.

Whitley got a lot of special attention from the staff on this visit - not a bad gig for her!

His pain was pretty minimal upon returning home.  Advil overlapped with Tylenol seemed adequate to begin with to offset the expected discomfort of someone tugging stitched out of your eyeball (much less the muscles in the eyelid being strained from staying open).  But, as the week proceeded, his pain only intensified.  Which, didn't make sense.

By Thursday, I was practically begging him to take some of my Vicodin, as I knew that was a prescription they probably thought he still had, and knew how important it was for him to stay on top of the pain.  Despite his reluctance, it helped - but the pain kept escalating.  It became imperative for him to keep up with the pain meds every four hours just to stay out of the high number range of pain.

By midnight Saturday night, John's pain level was so bad, he began to throw up.  Now, this is where the dr. and I disagree.  They would say that it was the Vicodin that caused the nauseousness leading to the vomiting.  My belief (based on 9 years of coping with pain, I've learned a thing or two) was that the intense pain led to those symptoms.  After having successfully managed Vicodin for 48 hours without stomach side effects, I don't think it would result in that kind of problem three hours after having last taken it.  Instead, it had worn off, so John's body was doing that same sort of "shock response" that mine has done when it gets so intense - sweating, clammy, overheating, and throwing up.

Whatever caused it - we might not ever know - but, we do know that that vomiting episode resulted in dislodging the cornea and creating even more pain.  Fortunately, John was able to get some sleep after that, but upon rising in the morning, and trying to open that eye, he went back in to "shock mode" with unbearable pain - there was no way he was going to be trying that again, even though both of us felt like it would be a good idea to see if indeed anything looked wrong.

Our guts told us there was an issue though, so we wisely called OHSU, spoke to a wonderful on-call Intern, Dr. Nisha, and after deliberation with her assuring us that pain was expected, we all decided it would be wise to go ahead and meet her at 12:30 in the office.

Flash forward to that first paragraph - and yes, when he finally, excruciatingly opened that eye (in an effort to read an eye chart....as if!....forget the eye chart - I think one look at the eye will tell you that vision is the least of his worries!) - we caught just enough of a glimpse to tell us the "globe was exposed" and it needed to be closed ASAP.  The only delay for surgery was getting that little bit of dry Life cereal out of his system for anesthesia to give the go-ahead - and of course, gathering the forces for it to be done by the experts.

So, we did some scrambling.  We'd taken the kids with us for the appointment, and this time, felt it would be prudent to stay up in Portland as the post-op appt. the next morning would be very early.  While waiting for the surgery, I took them to Fred Meyer - got them some dinner and snacks, and checked them into our trusty Fairfield Inn.  I then returned - the surgery started about an hour after I got there.

Since the doctors didn't know what they'd find once he was put under and they could finally peel back his eyelid and get a look, they told me it could last anywhere from 30 minutes to 2 hours.  It was an eery feeling being alone in the waiting room without any staff in a virtually empty building - especially as I'd just been there when it was packed five days earlier with Whitley.  Finishing a novel I'd been engrossed with and answering texts kept me pretty calm for a while, but when the book ended and both of our cell phones finally ran out of battery within minutes of one another, - at about the 90 min. mark of surgery - I started sweating it.

About a half hour later, they told me they were wrapping it up and the doctor would be out shortly to let me know how it went.  The "Fellow" doctor on call was Dr. Lauer - where as Dr. Faunfelder is the renowned expert with the cornea, that is Dr. Lauer with the retina.  We were very blessed he was available.  He came out, drew me some pictures with his sharpie and explained just how close we were to John completely losing that eye.

As we expected, the cornea was detached, not only that, it was folded over.  Bulging out the sides were the iris.  In fact, part of the iris had to be removed (that's the colored part of your eye) from the top.  It's probable we won't notice it as that is part of the ring of color obscured by the upper eyelid.  There is a lens (just like a contact) that sits behind the cornea.  That was actually bulging out.  Miraculously (and very unusually), it was serving as a cork preventing the rest of the eye from being exposed.  It took the "hit" though - and had to be sacrificed.  Apparently, the lens is like a Petri Dish for breeding bacteria, and once exposed to the air could not be saved.  BUT - the retina was saved - as was the rest of the eye from being exposed to bacteria.  HUGE praises.  Had that not been the case....then, the whole eye would have probably been unsalvagable.

His transplant cornea also took a hit, though it wasn't as damaged as originally estimated.  The hope would have been that if they knew it wouldn't continue to provide vision for him, why couldn't they have secured a new cornea and attached that one instead.  Well, time was of the essence to seal up that eye and get antibiotics coursing through.  It takes time to find the ideal cornea match, and right then, vision was secondary to saving the eye.

John woke up not long after the doctor had explained the situation to me.  He didn't even know why he was there - pretty funny.  They'd pumped that eye full of anesthesia, so he wouldn't be in discomfort for quite some time.  That was indeed the case as he was actually able to get a pretty good night's sleep in at the hotel, and finally get some real food into his body.  (Go Burgerville!).

The next morning's appointment had us following up with Dr. Lauer.  He ordered an ultrasound that verified the retina was intact and healthy.  Another huge praise.  We then saw Dr. Faunfelder who was in clinic that morning.  While he and John have an incredible rapport, he was very sad to see him given the circumstances.  However, he was fully optimistic that next time around we'd have lasting success.

So, yes, that's where we're at - anticipating the "next time around".  On November 7th, John will be seeing Dr. F. again to check the swelling and gauge the healing.  If all looks good, they'll be scheduling the appointment for the next transplant surgery - this time involving a new cornea and lens.  I think we all unanimously agreed that this time around, we'll leave the stitches intact indefinitely.  It's only for cosmetic purposes that they would need to be removed - which for us, is so not worth it!

In the meantime, John is healing.  A lot less painful, but without that lens, he's pretty light sensitive.  When he opens that eye, the vision is really impaired as well - pretty much just light, color, and general shapes (which is actually better than they'd thought it would be).

At last count, we had over 65 people actually "commenting" on social media of their concern, prayers, and love for John - much less the texts we both received.  The love for John is pretty amazing and overwhelming - so very much to be thankful for when all is said and done.

Sunday, October 27, 2013

4th Annual Pumpkin Carving Party

One of our favorite autumn nights happens annually the Thursday prior to Halloween, where we invite nearly a 100 people over to have some chili and treats and carve pumpkins with us.  Of course, 100 people don't show up, instead, we've had just about 40 in attendance for two years running.  This event gives me a chance to look for all sorts of Halloween food ideas in Pinterest and give some a try. 

Blessedly, Stephanie arranged to have Whitley watched by her mom (Grandma Kay) for the majority of Thursday so I had the day to get things prepared.  Even when I felt like so much had been completed the night before (and I'd be sitting around with "nothing to do" on Thursday - as I told John), there is still so much odds and ends to complete.  Mikayla was a lot of help upon returning from Brayden's football game, with just an hour to go before guests arrive.  However, as it turned out, even upon pushing out the start time an hour, our guests must really be opposed to arriving on time, as it was just our family and Cully (who had attended Brayden's game with us) all the way through the first half hour.  At least it gave us time to do the obligatory food spread photos which I refer to each year so I don't have to "reinvent the wheel" when setting it up the next time.

I multiplied our chili recipe by 6 this time - taking into account what was eaten last year.  However, because of the later start time, we had a lot leftover.  Thankfully, there's plenty of folks willing to take leftovers home.

Poor Zach - he kind of ends up with Brayden as his annoying shadow all night long.

I'll save myself from adding captions or names to all these photos - that would just take too long.  And, in some cases like this pic, I really have no idea what was going on between Joe and Cyrus.

I do have to add that Heather was a little distracted at the beginning.  We had our tv on split screen so she could follow her beloved Red Sox in the World Series and the Carolina Panthers (Kenjon) playing a rare Thursday night game.  Red Sox lost, but the Panthers won... =)

I love how we always get a contingent of "Harlow folks" who congregate in the same place every year.

John was restricted from doing a pumpkin due to his eye sutures removal, so he gladly took to socializing.  - A huge shout out to Cully at this point, who manned the camera, love that guy already, but love him even more when he preserves memories on our behalf!

Cyrus (our Olympic athlete!) - is a pumpkin carving genius.  He "dibbed" the outdoor space for him to go to work on a "Grinch" pumpkin.  

This is how Brayden rolls every year, he cons someone else to carve his pumpkin every year (I think Zach has had that honor two years running).  Brayden just sits back chowing on snacks...and eh hemm..."supervising"....

This guy (Paul) chose an alternative to the pumpkin - a mini watermelon.  Hey, whatever floats your boat.


LOVE these ladies.

Mikayla, just like Brayden, has a constant carving companion in Elaina.  However, unlike Brayden, Mikayla gets very involved.  It's a special time for the two of them every year.  

I thought it would be fun to use the pointer tool to do dots - but sadly they didn't illuminate enough when I lit the pumpkin.  I had to go back and cut my lettering out...

Trinity Ladies!

John, showing off his eye without stitches!!!

Cyrus, as viewed through our blinds, faithfully carving away outside.


I love this pic - such an easy event to host as everyone is busy socializing and carving.  

Mikayla and Elaina's finished project.


When we talk about Brayden "pestering"....this is kind of "case in point".

This is Alesha - the girl I've begun meeting with this year - I love this pic of her and her energetic smile.

Mikayla helped me to recarve my holes.

Our faithful cameraman Cully.

You'd think, with all of these beautiful girls in attendance, more single guys would make this event a priority.  Missed the bus on that one, boys!  These four are smart, though - Matthew, Jacob, Cully, and Paul.

My finished "pumpkin project".


Heather was at the Whites house prior to coming over and "borrowed" Whitley's pumpkin to bring over.  She returned it that night on their doorstep with Minnie Mouse carved in.  I can only imagine Whitley's "What's dat?" fascination with it.  =)

A little outdoor exercise with Heather and Mikayla playing volleyball.

Alesha and Ashley are roommates - and I got to "adopt" their room this year by being a resource for them and occasionally dropping off treats on their behalf.  Love these two girls!

Really feeling the enthusiasm from these guys.

Another Trinity Girls shot...

Brother and sister.  Jacob's sister, Miriam, is a freshman this year at UO and living in the Trinity House.

All in all, this was one of my favorite years.  In the past, there's been headaches I've fought, unexpected issues, panic about lack of food, etc....and this one ran super smooth.  Interestingly, the whole day was a struggle for me emotionally - I just felt oppressed and attacked, which further testifies to my firm belief that the enemy would not want this sort of event to take place.  It happened though, and I'd say we won the battle.