We have a plan

So Monday was the big appointment! This is what we had been waiting for the past 3 weeks to make a decision. Last week after talking to Dr. Warf in Boston, I called Dr. Tulipan's nurse, Melissa, and she advised me to keep this appointment with Dr. T to keep him in the loop and ask for his advice about how to proceed. I took a day off work, filled the van up with gas, and figured out how to transport Nate--this time with towels rolled up around his back so Clive doesn't press against his car seat. It's an almost 3 hour drive, and when we got there we got Nate a wheelchair and looked at the trains and got some lunch before heading up to clinic.

Spina Bifida clinic is always a long day, but you see all the doctors you need to see in one afternoon, so it's worth the wait. We waited in the lobby for at least half an hour after his appointment time, then the nurse called us back to weigh him and get his vitals and all that. While we were back there, she said, "So you're just seeing urology today, huh?" No. We are seeing urology today, but more importantly we are here for neurosurgery. It's very important that he sees neurosurgery. She says okay, she will tell "them." We head back out to the waiting room for a long time, then another nurse comes to take us to our room. She puts a sheet of paper on the door that says which specialists we will be seeing, and it only has urology listed. I told her, "This isn't right. We are here to see Dr. Tulipan too. It is very important that we see Dr. Tulipan. See his back? (raise his shirt) Make sure someone knows we are here to see him." At that point I was thinking, I KNOW there is no way we are going to get stood up today. But just in case, I left the door open in case I saw Dr. T walk by so I could holler at him!

A few minutes later, the urology nurse stops in. For a couple minutes, we talk about the bladder issues that happened while he was in the hospital after his last surgery, and she's basically like, "So he really doesn't need to be seen today," and I said we were mainly here to see Dr. T because ... and I lift up the back of his shirt. The nurse covered her face with her hands in horror and says, "I have to get Dr. Tulipan before he leaves!" and bolts out the door. And I said, "That's what I'm sayin!"

At that point, Maria comes in. She is the fill-in Spina Bifida clinic coordinator. Our longtime clinic coordinator left a few weeks ago. Maria was the coordinator several years ago, when Nate was a baby, so she is apparently filling in temporarily. She tells me she is sorry, she must be out of practice. Dr. Tulipan has already left for a surgery, but she is going to go page him to see if he can come back. I stood at the door with my arms crossed looking down the hallway, and every time she saw me she said, "You look so worried! Don't worry!" Then she comes back and says, "I'm sorry, he can't leave surgery (duh!) but he says he can see you on Wednesday at 10." I almost fell in the floor. I said, "We live in Louisville." She's very sorry. I asked her if we stayed the night if we could see him tomorrow. She checked with his office, and they said he had 12 hours of surgery the next day and that wouldn't be possible. I asked if I took Nate to the ER and they admitted him if he could see us the next day, and she said he'd probably be seen by a resident.

Now, if we were for sure going to do a shunt surgery, then I would have grumbled but come back on Wednesday and just stayed. But I just wanted to talk to the guy about our options. There is no way I am making this trip again. Oh, Maria knew I was mad. She told me to call the next day and ask to speak with only her. Um, no way. And at this point Nate was barely holding it together after a long day, and we just had to get out of there. I was just floored by the whole situation. It was one of those times that are so ridiculous that you know God has to be doing something here, ya know? This has never happened before. And I don't know what God has up his sleeves, and honestly I'm a little bit ticked about it! :) But we left. And somehow I got turned around on a back road--which is really odd because I always take the same way out of town and never get lost--and somehow I ended up at the side entrance of the apartment where I lived when I was pregnant with Nate during the MOMS study! What? So somehow I ended up back at the beginning. I still don't get God sometimes.

So the next morning (Tuesday) I called Dr. Tulipan's office to talk with Melissa. She said she already had an email in her inbox about this situation, and she was furious. At that point, I just wanted to move on, but I wanted to explain what happened and why we didn't see Dr. T. She said she had an email from him saying, "I don't know why this mom didn't let anyone know she was there to see me..." @#$%^&!!!!! Melissa said she set him straight about it. In the meantime I was getting all of Nate's records sent to Cincinnati for a 3rd opinion.

Yesterday afternoon, Dr. Tulipan called me. He started the conversation with, "Sorry about yesterday. No one knew you were there to see me..." OMG. I just moved on. I told him what Dr. Warf's opinion was--that if it were up to him, he would do an external drain (EVD), ETV if necessary, and close the back again. Dr. Tulipan thought that "if you're really dead set against the shunt" then that was probably the best course of action. I asked him if it might work if we come down to Vanderbilt and let him do the EVD and close the back again (without a shunt or ETV), and he said we could try that, but what if it doesn't work and then we're another 2 weeks down the road and have to decide what to do again. Okay, we need to do the ETV. So I asked him his opinion about whether we should go to this neurosurgeon at Cincinnati Childrens or if we should travel to Boston for Dr. Warf. He said the doc in Cincinnati is well respected, but Dr. Warf has done more of these surgeries than anyone in the world. So "if you're dead set against the shunt" he would recommend going to Boston. And I said, "Okay, that's what we're going to do."

I called Dr. Warf's nurse, but this was at like 4:45 pm. I told her we wanted to come to Boston for the surgery, and Dr. Warf had in his notes that he would be happy to treat Nate if that's what we chose. She said his next available surgery date (he only operates on Fridays) would be November 11. I'm not wildly happy about waiting that long, but there's not much to do about it. She was going to check with him today before she could officially schedule the surgery. If that is his surgery date, then we will have a pre-op appointment the day before. We will fly into Boston either that morning or the day before, depending on appointment times and flights. Nate and I will be traveling there, and Blake will stay home with Georgia. My mom will meet us there to help me with Nate. It sounds like we will be in the hospital for a couple of weeks, which could include Thanksgiving.

Every time I tell someone about this, they either say "Wow!" or cry (well, that's the grandmas mostly). But honestly, I am relieved and optimistic, because we have a plan that I am comfortable with and a doctor I feel comfortable with. We just happen to have to travel to Boston for it. I actually wish they would call tomorrow and say they have a cancellation this Friday and want us to hop on a plane. I just want to get this going so it will be over faster. There is light at the end of the tunnell now.

I did get a great distraction from all of this today. My best friend in the world, Mindy, had her twin boys today, and I got to be there! They are healthy and precious! I'm a proud auntie! And I couldn't be more happy for anyone. My head has been spinning the last couple of days! So much going on. Never a dull moment! But I'll be happy when we at least get back to "normal-crazy" life.