A Thumbs Up from the Surgeon

We're back from a long day at CHOP to see Dr. Taylor (over nine hours in the car for a 19 minute appointment, but who is counting?) for one last post-op check. He seems very impressed with the progress she has made, and says that her results are remarkable. He seems especially happy with the way the surgeries addresses the asymmetry of her face, and says that her eyes are pretty much perfectly even. Of course, he uses different language to say that but I get the gist.

Going into the appointment, I had two things I wanted him to address, aside from the overall success of the surgery. Though the sutures were supposed to be dissolvable, it seems that Leah still has one large stitch at the very top of her head, possibly at the end of the thread where the knot was tied. I asked him if it was possible and he said very unlikely, but then I showed him and he seemed surprised. He and two of his residents examined it, and decided to remove it with tweezers and forceps. They all gathered around Leah and started to tug on the incision, and I assumed she would really lose it and that would be the end of her cooperation for this appointment. In reality, she took it all in stride, and just sat there looking moderately surprised that everyone was focused on the top of her head. She's actually quite good with pain management at this point (she shrugs off shots at the doctor's office with barely a raised eyebrow, as if to say, "I've had major skull surgery, so you don't really think that little needle is going to phase me, do you?"). After a moment of tugging, the stitch was out.

The other issue was that she seems to have a pocket of fluid on the right side of her head, just under the skin, in exactly the spot where the distractor sat against her skull. I have had a few folks look at it who have some kind of medical training, and they have guessed a variety of things, but most agreed it was just fluid that would go away. So, I was expecting Dr. Taylor to confirm that, and when he said it was actually a defect in the skull, I was quite surprised. I managed to get over the shock of hearing that there was a large hole in her skull enough to ask, "So, what am I feeling under her skin then?" He matter-of-factly replied, "Her brain." David and I exchanged glances, but he quickly reminded us that there's a hard covering over her brain, and that in all the cases in which kids have had these skull defects, there have been no cases of associated traumas. He also said that we shouldn't let it affect her activity in the least, and that we should treat her just like any other kid. We had removed her helmet for the appointment, and I was holding it in my hand, and as he said this I admit to thinking, "Well, she will just have to wear this helmet then for the rest of her life!"

On the helmet, he did say that he thinks it has done its work and that we should take it off. Since it's summer (and it was over 95 degrees in Philly that day!) it's hard for a kid to wear a full foam helmet, so he said to take it off. I asked about the flat spot over her right eye, and he said he didn't think the helmet would address that anyway. We still have an appointment set with Ramona, the Hanger technician, next week, so I will get confirmation from her before I make it official, but at least we will take it off during the day for now.

So, in the end, Dr. Taylor said we should come back in a year to check in, but that otherwise things are looking great!