Sarah had her first clinic on Tuesday.
At a clinic, children with similar complicated issues come to the hospital on the same day so they can see many of their doctors on the same day. Sarah has been recommended more than one clinic. On Tuesday, we went to a craniofacial clinic. ENT, Audiology, Speech, Dentistry, Neurosurgery, Plastics and Genetics.
When we arrived at the hospital, we had a time, but no idea where to go. We knew we were meeting with doctors all day so it seemed important to be in the right place and stay on schedule. So we asked at the security desk on arrival. They sent us to an office listed as doing a number of things, but including the craniofacial clinic. It was not the right place. They sent us to the ENT(ear, nose and throat). I explained to the receptionist at ENT that I expected to meet with lots of doctors, all day, but I was not sure where I was supposed to start. I asked if I was in the right place. Without looking, he just answered, "You'll have to come here eventually. Sign in." I tried to ask if I would miss my other appointments if I was in the wrong place. He gave me a look like I was crazy. Puzzled and a little worried, I sat down and waited for an hour or so. We worried the whole time that the reason it was taking so long was that we were not there at our scheduled time. We worried that we'd throw the whole day's schedule off.
Finally, we were brought back to a patient room where we met with a PA. She asked us a lot of questions, and then sent us away for a hearing test in Audiology.
Audiology and Speech are in the same place, so we did both while we were there. Audiology and speech were both good, but they did not offer new information. Audiology retested her ears, and reiterated that she has fluid in her ears causing hearing loss. Speech was glad to hear how well Sarah has been doing with her bottle.
It had begun to dawn on me that maybe we did not have appointments. Maybe we just had a list of doctors. We asked our friend from speech. She explained that we were where we were supposed to be. She told us that we should have gotten a packet in the mail explaining how the clinic works. We'd bounce around all morning between one set of doctors, then break for lunch, then we'd go upstairs and meet with another set of doctors, but they would come to us, so we'd just stay put. I wasn't sure if that should make me feel better or worse. It meant that it was not my fault that we waited for an hour in a waiting room. It also meant that there was a possibility we would wait similarly for each other doctor. She sent us back to ENT and we went with the confidence of people who knew where they were and where they were supposed to be.
ENT was closed for lunch. The receptionist (not the same one we had met earlier) told us to either break for lunch or try Dentistry. We went to Dentistry.
Dentistry was something of a surprise. It was not on my radar at all. Apparently, kids with Apert syndrome don't always have all their teeth. Sarah's jaw looks "full." There is not much to do now, except take note. The dentist thinks she has all her teeth. One suspects that they could x-ray and see more, but even with more information there is not much to do this early.
Back at the ENT office, we finally met with a doctor. He recommended tubes in her ears. The tubes will help the ears to drain. The will also vacuum out the fluid currently causing her hearing loss. Placing the tubes is relatively simple and it does not take very much time, but it is done under anesthesia. So, he is going to try to coordinate with Sarah's other surgeons.
After the fluid is gone, she will get another hearing test. It is possible that the tubes will resolve her hearing. If not, we will follow up with ENT to find solutions.
We did not break for lunch. We were afraid that all the waiting had not left us time for the afternoon doctors. So we grabbed a bite on the go.
The afternoon was much less stressful. We did not wait in the waiting room for long, they took us right back. We did not wait for the doctors for very long in the patient room. First someone came from psychiatry. I am glad that they are following, but the conversation was short. Sarah seems to be doing well, developmentally. She is a baby, acting like a baby.
We waited to see who would come in next. We could hear some of our favorite doctors in the hall. The neurosurgeon came in first. (Josh offered condolences since the Pats lost the Super Bowl.) But before we had gotten far, the Plastic surgeon came in. And a doctor from genetics. And then another plastic surgeon. They did not each meet with us and then converse elsewhere. They did the consult together. It was pretty awesome.
It is fun to watch a discussion on an interesting subject between the top experts on the subject. The topic that day, in that room full of brilliant minds was my daughter.
Sarah needs surgery to separate to separate her fingers, to repair her cleft palate, to protect her brain from pressure and to reconstruct. The biggest question of the day was not what needs to happen, but what is the timeline?
Sarah's next surgery is a big one. Her neurosurgeon and her plastic surgeon will work together to alleviate pressure by widening the area for her brain to grow, so that it can out not just up. (Or, as Lily put it, "Her head is tall, tall, tall!") They will use a ventricular drain to drain some of the fluid, but in a very controlled way. They are still hoping to avoid a shunt. She does have more fluid than is normal, which contributes to her head size. It is an art. Too much fluid puts pressure on the brain. The fluid is helping though, it acts like a balloon, helping to hold shape and also a cushion. The ventricular drain will help them monitor all these factors with precision. They will be grafting bone, filling in some of the holes.
After it all, her head will be rounder and look smaller and, of course, her brain will be protected. It is not scheduled yet, but it will be in mid to late April.
The experience was surreal. I left the room thinking that the surgery was no big deal. Company can skew perception. It took a few days for the magnitude of this surgery to sink in.
I still do not have the fear that I expect, so I thank you again for your prayers.