Call 2: After our trip to the Moran, I thought of all kinds of questions that I hadn't asked. They had been simmering in my brain for a week and I just couldn't wait. I knew that Dr. H had her conference this week and it seemed unlikely that I would be able to get ahold of her, but I figured if she at least had my questions, she'd be able to answer them as soon as she returned. Plus, if Dr. Two was calling me... maybe I should get a little more information.
So I called the only number I have for the Moran which is for general scheduling. The lady I talked to at scheduling was determined to relay my questions herself, so I asked two questions and hung up the phone. Not 10 minutes later Dr. H was on the phone to me. She talked to me for 15 minutes answering my question and relaying mild frustration that her secretary/assistant hadn't already gotten ahold of me with some of the information.
Call 3: Five or so minutes after we'd hung up, Dr. H called again going over a few more things and asking me a couple of questions.
(In the next 24 hours I received an email from the assistant and phone call from a surgery nurse wanting to schedule appointments for various of the kids. When the surgery nurse called and I asked her a few more questions and she seemed moderately impressed with my medical savvy. Mostly I learn quickly--these ARE my kids' we're talking about--and I'm not dumb. She said that she would ask Dr. H and get back with me, but Dr. H was already at the pediatric retinal specialist conference, so I haven't heard back, nor scheduled anything.)
Call 4: The phone number that showed up on my caller ID was "Utah Valley...." and I didn't know what that meant. I'd already placed a call to Utah Valley Eye Center where Dr. Lloyd's office was to discuss a billing issue. And my kid's pediatrician is part of Utah Valley Pediatrics, where I'd set a few appointments recently. So I picked up the call. It was Dr. Two's office.
"Dr. Two has a question for you," the receptionist said.
"OK," I said thinking that she would then ask the question.
"Hold on a moment."
Curse you, I thought. Your darn caller ID fooled me and now I'm going to get chewed out by Dr. Two.
"Hi, this is Dr. Two," Dr. Two began. And then very meekly explained that he had just today realized that I had canceled the appointment with Dr. Z. He kept saying things like "it's not a big deal" and "you can do whatever you want" and "I'm not trying to pressure you to do anything".
I explained that the doctors at the Moran didn't like working with Dr. Z since he left the Moran,we were already involved in a study at the Moran, etc. Dr. Two told me repeatedly that that was fine. No big deal. Dr. Z flies into Utah on a very regular basis.
Call 5: In the late afternoon, I got another call from Dr. Two's cell phone. Intrigued, I picked up. Dr. Two was incredibly apologetic, but Dr. Z is really amazing and would I be willing to reconsider coming to the multi-hour appointment for all seven members of my family the next day.
I told him I was willing, but I had a couple of issues. Number one, cost. Our current insurance has an out-of-pocket maximum of $9000 for our family for one year. We are on track to reach that and we can't begin to afford it. Number two, trauma. Annika was poked for a blood draw at the Moran that went very badly. Those are my issues.
Dr. Two said that he understood my dilemma and it was no big deal if we didn't come tomorrow, but would I at least talk to Dr. Z.
"Sure. I'll talk to him," I told him.
"You're a very nice woman," Dr. Two gushed, apologizing again for bothering me so many times in a day.
Now, my big boys had just finished their basketball season and to conclude things, their coach wanted to take the team to a BYU game. Wendell and I already had a few tickets and had promised our kids that we could go that night, but we didn't have enough tickets for our family to sit together, so this would work out nicely. The boys could sit with their team and the other 5 of us could share the four good seats. Unfortunately, Wendell ended up in an all day meeting in Salt Lake and I had to do all of the meeting the coach, feeding dinner and getting the kids to the game by myself.
Knowing that Dr. Z was going to call, I hung around the house as long as I could. At the appointed time, I drove to the school to meet the boys coach and pick up our tickets. Though the coach had been very specific about the time, he showed up almost 10 minutes late. I got the tickets and rushed home.
Call 6: Dr. Z called, as I had feared, while I was gone to get the tickets. Anson picked up the call and relayed the message when I got home. He told Dr. Z to call back in five minutes. We quickly ate our hot dog dinner. I decided that we have a life outside of doctors appointments and if Dr. Z called before we left, we'd talk, otherwise we'd have to talk tomorrow.
Call 7: As we finished dinner, the phone rang. It was Dr. Z. He introduced himself by telling me that he was not just a geneticist, but he was also a retinal specialist and is the best in the world at what he does. Then he encouraged me to look him up. (I did. He's Harvard, MIT and Johns Hopkins trained and is currently the Director of Institute at the the university that he flew in from.) He went on to explain that he's sure that, as a parent, I would like to see as many doctors as possible. I told him I agreed, but I had a couple of issues.
"I know. Cost. I am not charging you anything. Dr. Two is not charging you anything for this visit. The DNA will cost you nothing and if other costs get too great we can connect you with some charity and things."
"I have just one other issue," I began.
"Yes. Dr. Two told me. No, we do not want to scare your little ones. We can do some things with spit and cheek swabs. That is all I need to get the DNA."
"Great," I said. "We'll see you tomorrow at 1:00."
"I'll have Dr. Two call you tomorrow to confirm everything," Dr. Z said.
Apparently, the condition my children have is rare enough that the retinal specialists are now calling me, begging to see my children, and even meeting my "demands". This is all a little weird. Still, how cool is that the people are fighting over my children and willing to see them for free?