The Tortoise got a second wind…

When I last update everyone, we were planning on heading to Jacksonville next week to meet with a pediatric ophthalmologist. Today, our original pediatric ophthalmologist from, Daphne, Alabama informed us they had a cancelation on Friday and we could meet with them Friday at 10 am if we were interested. Interested!?!? Yes, we’re interested! Our original appointment with them wasn’t until March 30 and now we’re meeting with them Friday, February 24!

I had also been playing phone tag with our pediatrician’s nurse, Adrienne. Adrienne is just as wonderful as Dr. Willert and always finds ways to squeeze us in Dr. Willert’s schedule. She’ll block of more time than a traditional appointment requires, just to be sure we have enough time one on one. She’s awesome! Adrienne was able to literally squeeze us in with Dr. Willert tomorrow at 1 pm! Adrienne, Dr. Willert and I will be meeting to discuss getting a referral with Dr. Fearon and where we want to go from here.

Through all of this, it amazes me how quickly and instantly everything can change. From the call from the pediatric ophthalmologist, to speaking with Adrienne, everything took place in an hour’s time. That Tortoise must have gotten a second wind. (:

Tortoise and Hare...

A little background, before I share our progress. Dr. Fearon is a craniofacial surgeon out of, Dallas, Texas. He has performed more craniofacial surgeries, than anyone else in the country. He has operated on a friend of mine’s son and goes beyond being ‘the best of the best.’ Dr. Fearon's Web Site

Last Tuesday, I put an information packet together to send to Dr. Fearon. I also emailed him, to give him a brief background on Nathan and to let him know he should be getting a copy of Nathan’s CT scan’s and more thorough detailed information on him. Dr. Fearon does what I have seen no other doctor do. He highly encourages people to email him, ask questions, send pictures or scans and he will give an opinion as to what direction to go. He is incredibly well known in the cranio community for being someone who is willing to listen and help in any way he can.

The negative of having technology at our fingertips, is that it sometimes makes things too accessible. I checked my phone what seemed like every 30 minutes, Wednesday through Friday. In reality, I was probably checking ever couple of hours or so. Friday evening, I relented to the fact that it was a holiday weekend and would resume my ‘waiting by the phone’ scenario bright and early Tuesday morning. Sunday morning, my phone chirped to notify me I had a new email. Thinking it was an ad or spam, I looked at my email and suddenly my heart felt like it was going to beat out of my chest. My hands were shaking and I could barely think. Brian was out fishing with some friends, so it was just Nathan and I at home. It was the email I had been sitting on pins and needles waiting for. Here it was and I couldn’t even open it.

I called my parents who were on their way back from a well-deserved mini vacay in, Charleston, South Carolina. Through my unsteady voice I muttered ‘Fearon emailed me.’ I put ‘Buzz,’ ( i.e. Toy Story ), on the TV and went in our bedroom to talk with my parents. ‘Buzz’ would guarantee me at least 45 minutes of time to talk with my parents and go over what Fearon said.

The email was unbelievably informative. We were given more information and direction as to what to do with Nathan’s condition in a 10 minute email, than any doctor in an exam room had been willing to do or give. He listed out three possible scenarios that we could be looking at for Nathan, but definitely agreed that Nathan did need to have an eye exam done.

We were looking at Nathan having an eye exam done at the Naval Hospital on March 13. Our pediatrician, Dr. Willert, really wasn’t too thrilled with that idea for a couple of reasons. One being, how long we had to wait for the appointment. Two being the appointment was with a general ophthalmologist and not a pediatric ophthalmologist. We had a consecutive appointment with a pediatric ophthalmologist in Daphne, Alabama on March 30. Still our pediatrician wasn’t thrilled, but it was all we could do. Or so we thought. I was able to get in contact with a pediatric ophthalmologist in, Jacksonville. I was able to quickly brief him on Nathan’s condition and what it is we were looking for in our visit with him. His office was nothing short of amazing and was able to get us in, next Tuesday, February 28!!!

Hopefully, we will be able to get a referral from Dr. Willert’s office this week and we will be having the eye exam performed next week. From there, we will take the results from the ophthalmologist and contact Dr. Fearon. We want to at least get a consult with him, so that he can physically exam Nathan and give us his recommendations as to what he thinks we should do.

Progress is being made. Slow and steady progress, but after all it was the Tortoise who won the race by being slow and steady. 

That's not what he said...

It seems like it’s been 2 months, but truly it has only been slightly over a week since we met with Dr. Blount and Dr. Grant at UAB. Dr. Willert, our phenomenal pediatrician, was on vacay last week, ( She deserves 6 months of vacay after everything she has done for us! ), so we haven’t had a chance to meet with her and go over our appointment with Dr. Blount and Dr. Grant. I expressed my concerns about the meeting with Dr. Blount and Dr. Grant and how I wasn’t exactly thrilled or impressed with how the appointment went. I asked if she had received their report from the appointment yet and she said she had. She started dissecting Dr. Grant’s report line by line and sure as his sucker punch hit over a week ago, he hit me again. Only this time it was from over 300 miles away.

To put it simply, what Dr. Grant stated in his notes, was night and day different than what he said in the exam room. I didn’t have to state that I wanted another opinion. I didn’t have to state that I wanted to haul my 2 and a half year old son, my 28 week pregnant self, my exhausted husband and my voice of logic and reasoning mother all the way across the country in order to receive this second opinion. I didn’t have to say that I was beyond displeased with what Dr. Grant placed in his notes and I didn’t have to state that I once again had more questions than answers for the hundredth time in the past 2 months. I didn’t have to state these things, because Dr. Willert already knew them and agreed with them wholly.

Before today our plan was to wait and let Nathan meet with an ophthalmologist, have an eye exam done and see if there was any increased cranial pressure present. Now we are actively pursuing other doctor’s opinions on Nathan’s craniosynostosis, as well as actively pursuing seeing the ophthalmologist.

It is the never ending game of hurry up and wait.

It is, but it isn't???

We got to Birmingham on Thursday and quickly found our hotel. We specifically looked for a hotel that had amenities we would need, in case we were to stay there during Nathan's surgery. Nathan's surgery was looking like our trip would be a week long, so we had very specific things in mind as far as location of the hotel, ( i.e. proximity to hospital, restaurants, malls, family, etc. ) We stayed at the Embassy Suites in downtown Birmingham and were beyond impressed and thrilled with their generosity, ( look for another blog about that ). We got situated in our room and decided to head to dinner. An amazing pulled pork dinner, fried okra, baked potato and sweet tea that would even make Paula Dean swoon awaited us at Sweet Bones Alabama. I wanted to see exactly how far we were from Children's Hospital, so we made the trek to the heart of downtown Birmingham and located our parking garage. 

Nathan taking his breathing treatment at the hotel. 

After a night of my mother and I alternating waking up every hour, we finally arose around 7ish. We had a hospital tour scheduled at 9 am and we wanted to be sure Nathan had a good breakfast. It was going be a BIG day for our little boy and we wanted to be sure he had a great start. ( The saying that 'a way to a man's heart is through is stomach,' is incredibly applicable at 2 years old. )

Nathan during the hospital tour of Children's. He was in heaven!

Children’s Hospital is in the midst of moving into their new facility, ( absolutely gorgeous! ). Amongst the hustle and bustle of our tour, we had to make our way around construction and a maze of stairs, as elevators were currently being occupied for men who wore hard hats. Yet even in the midst of construction, there was an amazing sense of peace that our little boy was going to be in great hands at this facility. We were beyond impressed with Children’s and truly believe we had picked the right facility for Nathan.

An hour to waste between the conclusion of our tour and Nathan’s doctor appointment with Dr. Grant and Dr. Blount awaited us. We checked in early and started paper work. If I signed my name once, I signed it ten times. We were quickly taken back to an exam room, where we waited for what seemed like hours. In reality, it was 45 minutes. Finally Dr. Grant came in, sat on the exam table and said, ‘this is not craniosynostosis.’ The next few moments are a blur, but I do remember that we pleaded our case and he left the room to look at Nathan’s 3D CT again. I completely fell apart. I paced the barely 10x10 exam room in circles and once again, reminded myself to breathe.

Coloring in the waiting room

Nathan playing with his cars, while waiting for Dr. Grant and Dr. Blount.

Eventually Dr. Grant came back in and had Dr. Blount with him. They both were in complete agreement that Nathan did not have craniosynostosis and operating on him would be negligent. We explained what the pediatric neurosurgeon said in Pensacola and Dr. Blount, said plainly and clearly, ‘She was wrong.’ As firm and sure as Dr. Canady, ( original pediatric neurosurgeon ), was that Nathan did have craniosynostosis, Dr. Blount and Dr. Grant were just as convinced that he did not have it.

I felt as if I had been sucker punched. That all the wind had been sucked out of my lungs and that the past 2 weeks of preparation were for nothing. I couldn’t believe what I was hearing. It was recommended that Nathan have an eye exam performed. At that eye exam they could measure if there was any increased cranial pressure, ( or ICP ), in Nathan’s brain. If there was, then we should progress down the road to alleviate it. If there is not, then Nathan most definitely does not have craniosynostosis and was misdiagnosed.

The roller coaster of emotion that our family has endured over the past two weeks is one that would put bungee jumping to shame. Take into the account that I’m 26 weeks pregnant and I can be easily be accounted for as one hot mess. We waited our turn in line, sat in our seats and kept all hands and body parts in the cart at all times, but we are ready for this ride to end. We are graciously waiting for the line of ‘Please wait until the ride comes to a complete stop, before exiting the cart.’ Because when we hear that, we won’t just be exiting, we’ll be running!