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!