Road Trip!

Unfortunately, this one wasn't to the beach or to a cabin in the mountains, it was much like Addie's first road trip, a quick there and back to visit a new hospital / doctor. As we've mentioned along the way, surgery has been lurking in the shadows as a way to resolve Addie's "drifting eye" (there is nothing lazy about this child, so even calling her eye lazy seems insulting to me). Now that surgery seems imminent (as in mid-November), we wanted to seek a second opinion, just to make sure we were doing the right thing and weren't missing anything. Our precious girl isn't exactly the simplest patient most of our physicians have ever seen, so we just want to make sure all things are addressed, looked into and that a major course of action like this is absolutely what we need to do. We also want to make sure we have the best person available to do the job. Don't get me wrong, in the last year, I have come to know and really like Dr. Schmitt, but at the same time, knowing and liking someone doesn't necessarily make them the best surgeon for the job. Addie only gets one set of eyes, so we needed to make sure we felt good moving forward.

So, yesterday, we made the journey to Vanderbilt and the Tennessee Lions Eye Center to meet with their chief of pediatric ophthalmology. Compared to our trip to Cincinnati, this was much easier. ..shorter drive, older Addie, and more seasoned parents are all winning combinations. The drive up was pretty uneventful, Addie cat napped, Philip balanced keeping us between the lines on I40 and handling work calls, and I waded through work Emails and project files in between tube feeding Addie. Multitasking is a must in the Humphreys' family these days since we can't convince the universe to give us more hours in the day to try to get everything that has to get done, done. We arrived an hour and a half early (huge feat for us when traveling as a family unit!) so we were able to have a very quick bite for lunch at the Panera near the hospital. Addie made friends with the person taking our order and every other college student she could get to make eye contact with her in response to her frantic waiving and calls of "Hi! Hi! Hi!". If you can see an adorable 2 year old waiving and smiling while wearing an eye patch and hearing aids and not smile and waive back, you have issues, my friend.

We took advantage of the free valet parking at the clinic **take note ETCH** (seriously, the guy tried to refuse our tip when we picked up our car, so this wasn't like most of the other "free" valet parking you run into) and were exactly 30 minutes early like we had hoped to be. Plenty of time for paperwork (that can take some time when your medical history fills a 2 inch 3 ring binder. ..and those are just the high points and don't include therapies) and another tube feeding for Addie. Bless them, they had an infant waiting room and allowed us to use it to feed Addie with fewer distractions.

The orthoptist who took us back and did the initial eval was fantastic and didn't miss a beat when Addie cried through the whole interview and testing. Addie is pretty great at doctor's visits unless she's hot, tired, or in an unfamiliar place. Unfortunately, this was a new office with new people and it was HOT. So, she cried. ..nonstop. Thankfully, they had great notes from our doc in Knoxville, and Addie still cooperated with the main components of the eye exam. We met with the ophthalmologist, had a chat, he examined Addie, dilated and tested her eyes, and we were through. No fuss, no muss, very efficient - all things I applaud in our doctor's visits since we run on a pretty tight schedule ourselves.

Honestly, we didn't love everything the doctor had to say. He basically said that based off of Addie's medical history (Grade IV bleed, extreme prematurity), that expecting her eyes to ever work together was a "lofty goal" in his opinion, so if we wanted to wait to try aligning the eyes until she's 3 or 4, he would be ok with that choice. He would absolutely have us continue patching and re-evaluate for surgery in a few years. I know that may seem like good news (Put surgery off?! Why not?! Sure?!), but it's really not. He's basically saying that we give up on hoping her eyes ever learn to work together and just take the course of least resistance for now, and we'll try to make them look better (purely cosmetic at that point) in a few years. See, the sooner you align the eyes surgically, the more likely they are to learn to work together. Patching helps keep the vision equal in each eye, but it obviously doesn't help them learn to work together.

Our doctor in Knoxville has wanted to treat her eyes surgically ASAP since we started seeing her a year ago because the sooner you can line them up, the more likely her brain is to figure out how to use them together. She thinks Addie's brain can figure it out, or she's at least willing to give her a chance. Anyone who is willing to give Addie a chance is good people in my book! Don't get me wrong, I'm not upset with the doctor in Nashville. ..he was just giving us his honest opinion based on what he read on paper about our girl. He hasn't spent time with us, gotten to know us, seen what Addie has overcome, so it's not his fault. All he has to go on is what he has in her charts, and I know as well as anyone that her medical history doesn't paint the prettiest picture by itself. You read the medical history and then look at pictures and videos of her from 2 years ago, a year ago, six months ago, and it all becomes this beautiful story filled with miracles and moments that defy all of the odds. He didn't realize all of that, so he gave us his clinical eval and response, and that is completely ok. He may very well turn out to be right in the end, and we may wind up "chasing our tail" trying to align and re-align her eyes over the years...but as Addie's parents, we have to give her a chance at binocular / 3D vision. I will be able to sleep with the decision to treat, as much as the thought of surgery makes me want to run and throw up. Choosing not to do everything we possibly can, to not give her every opportunity, would feel like we're giving up before we even see what she's capable of, and after everything we've been through, I refuse to give up on any of her senses, systems, or abilities now or ever.

The end results of this trip were very specific answers to my very specific prayers leading up to the appointment. My prayer was that 1. we would know very clearly what the best course of action would be - surgery or no surgery 2. we would know exactly who we want to do the surgery and where (if we decided to go that route) 3. that Philip and I would be in agreement on both. While we didn't get the ultimate answer we wanted - a non-surgical "fix" - everything I asked for came out of that appointment. Both Philip and I came out feeling strongly that we should surgically treat Addie's drifting eyes and the sooner the better. We also left feeling very, very good about our doctor in Knoxville. Not does she want to give Addie every chance at good vision, but she had done some of her training in medical school and after at this office, and everyone we spoke to sang her praises. It was reassuring to hear the department head in Nashville speak very, very highly of her (it wasn't just the obligatory, "Oh, she worked here, we know her, she's pretty good. How is she doing?" but a "If you want to move ahead with surgery, I will absolutely send you back to Allyson because she is fantastic. We knew she would leave here and have a great practice in Knoxville because she's just that good."), but it was even more encouraging to hear the tech say positive things about her. If I have learned anything, it's to listen to the support staff. They know the doctor's as well as anyone, and they aren't required to say nice things.

So, for all of our prayer warriors out there, please remember us as we have her pre-op appointment on Tuesday (11/5), and her surgery is set for the following Wednesday (11/13). We need her to stay healthy, so please pray for good health between now and then. Please pray for Dr. Schmitt, the anesthesiologist and the rest of the team that we will have on 11/13. We want a rested, focused, steady handed surgeon and a very capable anesthesiologist (the vent scares the bejeebies out of me. ..always will). This is considered an outpatient procedure and "not a big deal" surgery. ..but they're all big deals, always. Please pray for strength and courage for our girl (and her parents!). She's not going to understand what's going on or what has happened to her, and that breaks my heart. Lastly, please pray for successful results, quick, easy healing, and that something in her brain "clicks" and she starts using both eyes at the same time.

We get to visit the ENT to discuss her progressive hearing loss tomorrow (Happy Halloween to me. ..), so here's hoping we get treats and no tricks when we meet with them. My mommy skin is getting thicker, but two tough appointments like this back to back will definitely be putting it to the test.

Here's a fun picture to end this more serious post on:

    "No mama" when asked if I can brush her teeth.. And I love seeing that sweet right eye!

 

 

                             Happy Halloween!!!!