First let me say that I have no problem at all with Peyton's neurologist in Charleston. As for genetics, I loved our doctor in Houston and wish he was still her regular doctor. MUSC just isn't as advanced as the bigger hospitals.
At the neurology appointment this morning we went through Peyton's history and we pretty much decided to discuss the pain management issue as well as the possibility for some sort of sedative for Peyton at night since she's having an increasingly difficult time getting on and staying on bipap at night. She has been taking oxycodone for her chronic hip pain for about the past month. It does seem to help, but long term, it's probably not a good option because it is a respiratory suppressant. This isn't good for someone like Peyton who has chronic respiratory illness! The doctor was able to suggest something which, over the long term, will be better for her. I have already been in contact with Peyton's neurologist back home and gave him the medication suggestion. We will see what comes of that.
The genetics appointment was LONG. We were at CHB for about 3 hours! At least 90% of that time was spent WITH the doctor. He was impressed with the doctors we have already seen in genetics (Houston). He basically said it doesn't get much better than that. He took Peyton's ENTIRE history. He examined her. He also took family history - our parents ages/any medical issues, death/age at death/cause of death, our siblings/their children/any medical issues, any random medical issues in the family, history of illness, etc. He measured our (Ron and I) heads. Turns out Ron and I both have large heads. Yes he did actually comment that I have a large head...for a woman. Nice. :) He gave a suggestion for a genetics clinic that is in South Carolina - we actually have an appointment in September with one of their branch offices. However, he said he would NOT go to one of the branches, but go right to the "mother ship", which is about 3 hours from Charleston. I think I will be looking into relocating our appointment.
The most recent genetics testing that Peyton has had was done about a year or so ago. He suggested that at some point perhaps we should redo it as the testing process is becoming more enhanced. We discussed a test which is part of a research study at CHB. We had Peyton's blood drawn so they can basically bank her DNA. This way if they decide to proceed with any testing through CHB, they will already have her blood. The doctor is going to present her case next month to a committee that will determine if Peyton is a candidate to be a part of this research study. If she is, they will need blood from both Ron and I. We can do that in Charleston and have it sent up apparently. If she becomes a part of the study, though, it is going to mean that one of us (not Peyton) will have to come back up here because there is a very lengthy consent process to be a part of the study. Then when the results are in (again, if she is approved for this study), we will have to come back up.
There obviously aren't any answers on the genetics front, but it is great that we have another set of eyes looking at Peyton. The doctor took a variety of pictures of Peyton and he will use those when he sits down with his colleagues to discuss various cases.
This week has been very tiring. So many appointments packed into just 5 days. I feel like we've been here two weeks or more, not just one.
Now that all the appointments are over, we will head back to Charleston and bring with us all the knowledge we gained so that we can discuss everything with all of Peyton's doctors back home. I've already been in touch with a few and, in fact, have heard back from a couple already.
I have to say that if you are ever in a position where you need a second opinion (and, my God, I really hope you do NOT find yourselves in our position!), our experience with Children's Hospital Boston has been outstanding. We have been extremely impressed with the facilities and, of course, the physicians. We actually had the experience yesterday of traveling a short distance to Waltham, MA to see one of the doctors in one of the CHB satellite offices (this was where he was going to be IF we wanted to see him while we were here). All the facilities we visited were outstanding. We encountered volunteers in the Orthopedic clinic who really went out of their way to make the kids comfortable. Most clinic waiting areas had a variety of activities for kids to do while waiting. The Pulmonary clinic was all decked out in displays filled with tons of Jiminy Cricket memorabilia. The lobby area was incredible! There's a huge aquarium, an "pond", and a musical staircase. It's just a regular staircase that you have to go up to get to the main elevators for each wing of the hospital building (there's a glass elevator for special needs/wheelchairs/handicapped/strollers) though. But this staircase...on the one wall there are sensors and lights. As you go up or down the stairs on that side of the staircase, the sensors play music as you pass them. And the lights light up as you go up/down as well. Pretty awesome stuff. Then they have this huge plexiglas box in an area of the lobby. Inside, they have this amazingly intricate wire track that goes all over the place - like a roller coaster - up and down, loops, etc. Balls travel the course of the tracks and there are various metal parts to the track which, if they tilt one way or another, will determine which path the ball will take. They ball might bounce down a little staircase to the next path, or zip around a few loops ending in the ball being tossed through the air into a wire basket before it moves on to the next piece of the track, or maybe it sits in a wire cage until 5 balls in total are in the cage causing the cage to flip and eventually dump the balls into a bowl where they will circle the circumference of the bowl before the finally descend into a hole in the bottom of the bowl. At various points on the tracks, the balls cause a hammer to strike a bell or chime or a xylophone key or some other "musical" object. It is the coolest thing. I could have stood there watching it for hours. Seriously.
Check out these youtube links:
Did we get concrete answers to anything? No.
Did we get recommendations/suggestions? Yes.
Was this trip worth our while? Most definitely.
Now it's time to get some sleep because we're hitting the road in the morning! We will be getting home on Sunday.