Jumping Through Hoops and Raising Bars

You’d think from the title of this post, George and I were doing Crossfit. How I wish we were. Instead, we were running around trying to determine the next best course of action for our baby.  Not long after diagnosis, our appointment to meet with the Neurosurgeon was set. This appointment was different. We were cool, calm and collected. I had done my research. In my mind this appointment was an interview.  We knew Taryn had to have surgery, now we were trying to make sure she received the best care.

Taryn and her Cousin Aubrie

Taryn and her Cousin, Aubrie

As we sat down to talk with the Neurosurgeon (a very nice man by the way), I was prepared. Polite, but on it. The territorial and well-researched mom deep inside me seeped out of my being and there was no hiding the fact that I meant business. I was ready to interrogate. After I spoke a bit about Taryn describing what we knew so far, the doc sat back a little on his rolling stool, cocked his head to the side and asked, “Are you a Doctor?”  I was surprised and instantly figured he thought I looked familiar.  “No,” I said as I smiled back.  “Oh, you just seem well-versed on the subject,” he said.  Instantly, I had wished I had said yes. I imagined an answer of “Why yes, I am a Dr. and I will be watching you over your shoulder the entire step of this journey. Better keep your game tight.” Instead I just smiled. Inside I felt a little bit of glory because I felt like I was doing Taryn justice in the exam room. After the usual review of what would be done in surgery, it was determined we would set a surgery date in early October, provided it worked out scheduling wise.  And with that, we were on our way.

George and I walked back to the car, Taryn in tow, both deep in thought. Once we started on our way home, I looked at George and said “So, what’d you think?” inquiring about his opinion of the surgeon. He looked at me, smiled, raised his shoulders and said “ehh,” with a smile.  I felt the same way.  The surgeon seemed nice, but did he seem right on it like I wanted him to be? Nope. Chalk it up to high standards and over protective parenting, but when your child is about to go through intensive surgery, you want to feel confident in the surgeons performing the task.  We’d made some poor choices in the past, going through with surgeries where we wished we had waited, found a more qualified doctor, and listened to that little voice in our head (for example, George’s shoulder). We weren’t going to take that chance again, especially with our daughter.

So began our search for a second opinion. I don’t know why doing this seemed so uncomfortable. I wanted to do it. In fact, I wouldn’t not do it. I knew people did it all the time. I would even recommend other people do it based on my past experiences, but for some reason I felt like we were cheating on the doctors who had diagnosed Taryn. I was sure they were good doctors… they certainly were nice guys, and my internet searches turned up nothing out of the ordinary. But, I just didn’t get the comfortable feeling that I yearned for.  At this point, I wasn’t sure if I would ever receive the feeling I was after, as putting your child through surgery surely couldn’t feel comfortable. Looking back now, I know we made the right move.

My dear Audrey, a nurse, and most trusted friend, recommended I check out Children’s in Seattle. She had worked with a Neurosurgeon there and thought it would be worth it to go see their team.  His career was full of accolades and Children’s definitely had a great reputation. George and I decided to schedule an appointment.

Now here’s where the back and forth and jumping through hoops began. I’ll save you the monotony of our trials, but it was absurd. Our insurance allowed us to see whomever we wanted, but Children’s required a Dr’s referral.  Should be easy.  We just wanted a second opinion to see a Craniofacial Specialist, the type of Specialist whom we had already been referred to before, but this time, we had a positive diagnosis in hand.  Piece of cake, right? Unfortunately, that wasn’t the case. Ultimately, it was the million phone calls, the faxing and re-faxing of information, the information being delivered to the wrong facility, the chart notes mix ups, etc. on top of the surgery situation at hand and my volatile emotions that nearly led me to the crazy house.  I’m sure if you ask my colleagues at work, they’d agree — I nearly lost my mind.

In the meantime, surgery was scheduled for October 15 with the first pair of Doctors, and the date was approaching quickly.  We wanted to be sure to get in to have the second opinion before we made a decision, but the “preferred” timeframe for the surgery was coming up fast. I know now that having surgery right at 9 months is not a huge deal, but at the time, I was unaware and working so hard to control the situation (with no reins at all) and meet our dates. Finally, we made our first appointment at Children’s. I felt so relieved to have made progress. With so many things feeling out of control, I had made one thing work. The appointment was 1 week before our other surgery date….

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