Wednesday, September 11, 2013

Back to Work! And More News About Xander

Well, I did it. I went back to work on Monday, just shy of 3 weeks after my surgery. I had 8 students; 4 in the morning, then a two-hour lunch break and 4 in the afternoon. Now that all 20 of my USF kids are signed up, I will actually do 10 on Mondays, followed by student recital at 4 pm most weeks. I usually do another 4 or so at home in the evenings, but I'm not starting up my home lessons until next month. I taught another 5 on Tuesday afternoon (followed by a hard nap each day). I will also teach a handful on Thursday mornings. It's not a bad load. 1 full day and two half days per week.

Oh, and I may have said "Yes" to being the rehearsal accompanist for USF's upcoming musical, "How To Succeed in Business Without Really Trying."

And by "I may have said 'Yes,'" what I really mean is, 
I went and introduced myself to the new theatre 
director and asked if I could be the rehearsal accompanist 
for the musical... I can't help it! It's like an addiction. 

The show is in November. Auditions (which I will be sight reading- GAH!) are next week. I'll keep you posted! :D

Anyway... here is where I currently stand in my treatment: I will continue to go to the Prairie Center and get a Herceptin infusion once every 3 weeks. Oh, and while Dr. Dosch was doing my mastectomy, he went ahead and replaced my faulty port, so now I have one that works again. Woo! I went to the plastic surgeon on Friday of last week and got my first expansion. They showed me what the expanders look like:
It's folded a little differently than this, 
but that is a pretty rigid plastic material

This explains why it feels like there is a large lump of clay under my skin. The circle on the top is the magnetic port, which is where it's safe to poke a needle into for expansions. They use a little magnetic finder, mark the skin, then poke a needle in and basically use a syringe to fill me with saline. There's more tubing involved, but that's the gist of the process. The reason many women say this hurts so bad is because of the amount they are given. I was only given 25cc's on each side this time. Next time will be 40, then 50, maybe 60 and possibly as much as 100, but I don't have to take that much at a time if I don't want to. It is necessary to take muscle relaxers for a few days following a fill-up, because the expanders are behind the pectoral muscles. I didn't even feel the needle poke because I don't have functioning nerve endings in that part of my body anymore, so that's a plus.

The expansion process takes about 3 months on average, but I can do it at whatever pace I want to. Then after I decide I have been expanded enough, they go one larger (it's like going "one louder" on your guitar amp), then leave me alone for 3 months to give the muscles time to adjust to their new shape. After 3 months, I can have the second surgery to take out the expanders and put in the actual implants, which are supposed to be much more flexible and natural feeling.

So that's where I am in the process. Now for an update on The Boy.

Today (Wednesday), we took Xander to have a CT scan before school, then let him start and finish his day at school but picked him up for a couple of hours in the middle of the day to visit the surgeon, Dr. Bufo. We were very impressed with this guy's knowledge of pectus excavatum and the number of cases he has treated. Here are a few things we came away with from today's meeting:

  • This is not something that Xander will outgrow, but rather that it will get worse as the years go by. He says that Xander will probably go through another growth spurt, or possibly two (Geesh! I thought it was hard to find pants for him now...) and that the pectus will continue to get worse, not better. 
  • He showed us on X's chest how you can see his heart beating very close to the skin while he is at rest. While his heart is not compromised yet, it will get pushed farther and farther to the left until it's almost in his armpit if left untreated. Matt took video of this phenomenon because he told Xander, "You're going to want to see this freak show." 
  • Dr. Bufo explained the surgery called the Nuss Procedure that he is an expert on. He actually studied and worked with the inventor, Dr. Donald Nuss. The nuts and bolts of the surgery can be found in this link. Basically, they will surgically insert a bar through Xander's chest cavity that presses the sternum forward. There is a 5-6 day hospital stay involved.
  • Dr. Bufo said that the ideal time to do this type of surgery is when a boy is 12 because the cartilage in his ribs has not calcified into bone yet. Every year they wait, it gets harder to do, more painful, and less effective. Xander is still in a safe age range.
  • The C-T Scan that they did on him this morning showed that his heart is currently not in danger- it measured the space from the sternum to the spine. Likewise, the Echocardiogram also showed no defects, but Bufo says if he did a lung function test with a pulmonologist, it would probably show that his lung function decreases with prolonged cardio activity, according to the way Xander described his cross country experience last year.
  • The surgery will take 6 weeks of recovery time, so he wants to wait until school is out. (Let's see if he has Mom's resiliency. I told him maybe I could do my implant surgery at the same time and we could race to see who recovers first!) There is no rush, it is very slow-developing. So we made an appointment for a day when they don't have school in February to test him again, and make sure that insurance is going to cover the procedure, then we will plan to do the surgery in the summer so he doesn't have to miss school. 
  • I asked if he had any concerns about Marfan's Syndrome, which Dr. Sami, the cardiologist, had mentioned, and initially he dismissed it pretty quickly, but then when I got home, I got a call from his nurse that said Dr. Bufo was doing his dictation and noticed the note from Dr. Sami about the enlarged aorta, and asked if we would take Xander in to see a pediatric opthamologist, Dr. Tufty (interestingly, a Sanford doc), to tell us for sure whether he has Marfan's or not. Apparently, it's very obvious in the eye to the trained observer. 
So we are not in any hurry to start this whole process, but are methodically moving toward a resolution.  Meanwhile, here come a whole 'nother army of medical bills... yay...

And to think- this is our "easy" kid!

I have to tell you how proud I am of Xander though. Before we saw the surgeon, we were under the impression that the surgery was kind of optional, which it still is, but that it was more cosmetic than medically necessary. He said that given the choice, if it was just going to look weird but not be a real danger to him, he wouldn't bother. "I'm comfortable with who I am."  (WHAT!?! From a 13 year-old?!) I told him that maybe someday, you know, FAR down the road, maybe a girl might want to look at his chest without a shirt on... AFTER you're married or something. And he said, "If she doesn't like the way I'm made, then she's not the girl for me." (Aw! I hope he's able to instill such self-confidence in the "girl for him" somewhere down the road)

I just wanted to get that out there because his whole attitude might change when he's 15 and girl crazy. But for now, I have a psychologically secure teenager. It blows my mind!

Of course, this attitude shouldn't surprise me. This is the kid who regularly wears a T-shirt that says, "WARNING: You Can Go Blind From My Pure Awesomeness"
That's my boy!

1 comment:

  1. I'm so happy that you are doing well and in recovery mode! You are so strong and I am so glad to know you. My prayers will go out to Xander and the surgery. Glad there's no rush and that God is giving you some rest. What cool kids you have! Thanks for keeping the update going!