What a way to be greeted at the entrance into the NIH.. And boy were they not kidding. I had opened the map of the grounds last night to get an idea of where the building we were going to was. To say it was overwhelming is an understatement. But even looking at the size of the campus on the map didn't prepare me for the sheer size of the campus when we pulled in.
Our whole day of appointments was set in the Clinical Center, which didn't exactly eliminate the possibility of getting lost. The Clinical Center is the largest building on campus and has a total of 14 floors!!! Thankfully we got a spot in the parking garage right near an elevator AND as soon as we got off the elevator an employee who was walking down the hall offered to show us where we needed to go. I also think it helped that we arrived at 6:30 am, a half hour before appointments usually begin.
After registering at admissions, we were shown the way to the Pediatric Clinic, where most of the days appointments would take place. Our first task in the the clinic was to have vitals taken. Since we were early, we were taken right in for vitals. Up next was our meeting with a nurse educator who would go over our appointments and times for the day. The nurse educator was also responsible for making sure there were conference rooms and exam rooms available for when members of Phoebe's team came to meet with us.
Our nurse coordinator (who has been our lifeline to the NIH with helping plan the visit and setting up our appointments) met us at the clinic to go over the paperwork for the study, currently scheduled tests Phoebe would have while on campus and answer any questions I had. After signing all the necessary paperwork, she walked us over to the lab for both Phoebe and myself to get blood drawn.
They only drew 4 small vials of blood from me, but first they drew 13 vials of blood from Phoebe! 13! She did not flinch or wince once! She sat there like the fighter she is, the entire time!!!
With two meetings and two tests down (Phoebe gave a urine sample after the blood draw) we headed to grab a quick snack at the cafe before heading back to the Pediatric Clinic for our next meeting with the Nurse Practitioner. She would be who we would spend the rest of our day with, going over the extensive medical history Phoebe has, family medical history and a very thorough physical exam (the physical itself lasted 2 hours!!!)
While we were with the Nurse Practitioner, we would meet the rest of Phoebe's team. Phoebe's lead doctor, secondary doctor and Nurse Coordinator all joined us in the exam room.
A lot was discussed in that room with the whole team there. Ideas about what tests to add to the already existing blood orders, what specialists to get an appointment with while we are here, what tests to schedule that haven't already been scheduled...but most importantly...what they think is going on with Phoebe.
What's going on with Phoebe....that part of the conversation was hard to take. Some terms and potential diagnoses were ones I have heard before. We have been testing for them within insurances boundaries of what is covered (which is not enough for a definitive diagnostic test). But then there were others that I didn't ever expect to hear. Ones that made me feel like I couldn't breathe, that I shouldn't be here alone, that I am not strong enough to handle this, that broke my heart.
I try to keep reminding myself that these things are potentials and not definites. But that is easier said than done. We want the answers to what is going on with Phoebe so we can know what we can do for her. So I have to remember that while it is hard to hear things from time to time, it is a blessing that we are here, and that we are closer to having these answers being here than we have ever been over the past 4 years.
We spent a total of 6 hours at the NIH today. So to add some joy and excitement to our day, after our last appointment Phoebe and I went to the National Zoo. It was definitely a needed break!! We loved seeing all the animals and being able to walk around some place other than a medical center!! Phoebe especially loved watching the Panda's eating bamboo!!
We are now settled back in our room after having dinner at IHOP. We are both curled up in bed together, exhausted, watching Disney movies! It will be another early night for us since we have to be back at the NIH tomorrow around 7 am for more tests.