The Hospital Bill!

The bill for Leah's surgery arrived in the mail today, and it's a doozy. Before I give the total amount, let me assure everyone that we have insurance, so we are feeling very fortunate that we won't be responsible for most of this. Still, just looking at this number can cause profuse sweating!

The bill breaks down as follows:

Lab work: $2680

Anesthesia: $5140

Critical Care on the day of surgery: $3800

Critical Care the day after surgery: $1940

Plastic Surgery: $37,600

Neurosurgery: $15,600

Inpatient Hospital Stay: $89,300

Total Bill: $157,300!

Of course, let me also say that the services Leah received at CHOP were worth every penny of this, and besides paying the bill, David and I are donating money to CHOP this year so that they can continue to provide those services to other kids whose families may not be able to pay their bill.

Eight Weeks After Surgery

Leah's surgery was eight weeks ago, and we are still seeing progress on her forehead shape even though we have stopped turning the distractor. Dr. Taylor said we may continue to see changes as her brain "moves in" to the space created in her forehead. In the image below, it's especially noticeable if you look at how much of her right cheek is visible in the before photo (on the left) compared with the one we took this morning (on the right).

More visits to CHOP

We spent the morning at CHOP again yesterday for an appointment with the ophthalmologist. At this visit, Leah was presented with a clean bill of health again. The doctor dilated her eyes and checked her optic nerve for signs of increased pressure. He said all looked good, as did her ability to track objects and focus. So, we were sent away with instructions to come back in about four months.

We were also able to make an appointment for the next surgery with Dr. Taylor's scheduler. While the eight-week period is over in late January, his schedule was a bit full, so we ended up securing February 3, 2014. That's another Monday, and while we won't know what time the surgery is until the Friday before, we assume that it will be another 6:00 am surgery. The benefit of that is that we are Dr. Taylor's first case of the day, but of course the downside is that we need to leave the house just after 5:00 am. But, since this will hopefully be her last surgery, we won't mind the early wake-up call in the least!

Done!

We are just back from meeting with Dr. Taylor, and the appointment could not have gone better. He took an x-ray, which told him that Leah was done with the "activation phase," meaning that we don't have to turn the distractor any more. We haven't made any turns since last Thursday night, when we were unable to connect the device to what was left of the distractor. In all, we turned it 30.5 mm, or 1.2". During the office visit, Dr. Taylor used a similar device to pull a pin at the end of the distractor. When the pin was pulled, the joint holding the two parts of the distractor together released, and the part that was external to her skull came out. Leah didn't enjoy that part, obviously, because a good part of it was beneath the skin, but she recovered pretty quickly. Dr. Taylor asked us if we were ok as well, since it's always hard to see your child in pain, but at this point, we are pretty resilient, and this procedure was nothing compared to what we dealt with a month ago!

So, now we are left with a little hole in her skull, which he says should close over in about 48 hours or so. Of course, the main part of the distractor is still in place, and will be until the next surgery, which will take place in about 8 weeks. We are hoping to get a call back from the doctor's scheduler today so we know when that will be, but it will most likely be the end of January or the beginning of February. That surgery will be similar to the first, but less invasive, as he will just be removing the distractor rather than installing it. He told us to expect that surgery to last no more than an hour (plus anesthesia and prep time), and that she will probably be in the hospital for only one night. Plus, while the incision will be along the same line as this one, and will be the same length, we probably won't need to shave her head, which is good because her hair is growing back pretty quickly!

That main distractor is still pretty pronounced, and we will need to be careful that she doesn't bump it on something, but now that the external part is out, it's going to be much easier to take care...no more turning, cleaning, worrying! That also means she can go back to day care, and back out into the world...good news for the whole family!

Here's a picture of the part of the distractor that he removed in the office today:

We did ask about the shape of her forehead, which is still not perfectly symmetrical. He said that with the additional space in her skull, her brain will now start to grow in the right direction, and will likely fill in that part of her forehead on its own. He said we may not see those results for six months or so, and if it turns out that there's still a flat spot in the front, we can discuss helmet therapy to shape her skull. We are obviously hoping that won't be necessary, but are just going to put that worry aside for now, and see how the next several months go before we start to think about that!

Small milestone!

There's an upside to a very, very short distractor: over-the-head clothes! Leah is wearing her first non-pajama outfit in over a month this morning!

A pause, or an end, to the turning

Tonight, Leah's distractor was finally too short to turn. David tried to attach the wrench but there was so little of the distractor left that he was pinching her skin when he tried to attach it. She was crying, and though he kept trying to make it connect so we could get at least one turn out of it, we ended up giving up before we could turn it at all. Leah was pretty upset by the whole thing...it wasn't fun for any of us! We emailed Dr. Taylor, and he suggested we stop turning and come to see him on Monday of next week. He said he would do an xray before he decided if he would try to turn it anymore. I assume that if he did want to continue to turn it further, it may need to be done with a different type of device, and hopefully with at least a topical anesthetic, if not something more. We have turned it 30.5 mm so far, and we were going for 20-30 mm in all, so it's reasonable to think we may be done. If only her forehead on the right side had come forward further, I would feel much better at this point.

We need more distractor!

We sent more photos to Dr. Taylor this morning. From the photos below, you can see that we are starting to make some progress!

Here's a longer-range comparison, where the gradual change is more noticeable.

And just for fun, here's a comparison of Leah's face. The change in the symmetry of her face is kind of unbelievable in this collage. I admit that in the "before" photo, her head is a little bit tilted forward, so perhaps the asymmetry of her face is a little over-emphasized, but still...that's pretty remarkable! I have to admit that this photo alone is making me feel better!

So, the issue is that we are running out of distractor. See photo below for illustration:

When we emailed Dr. Taylor today, he said that Leah's forehead still isn't as advanced as he would like it, so we will keep turning. He did say that we will get as much out of the distractor as we can, and then perhaps we will deal with the rest of the forehead "down the road," which is obviously not what I want to hear. That could mean either a positioning helmet, or CVR (cranial remodeling) surgery later. We are hoping to avoid either of those, so we will just continue to hope that the forehead comes forward very, very quickly. There is no extension that we can add to the distractor, so when we run out, that's it. I am guessing that we will run out in a day or two, but David thinks we have more length than that, and Dr. Taylor seems to think so as well. He did say that we shouldn't dive under the skin in order to turn the distractor, which is a great relief. If we get to the point where it is going under the skin, he may ask us to get an extra mm or so out of that last turn, but I would email another round of photos to him before we get to that point, just to make sure we are still turning correctly.

On the bright side, he did say that her orbital morphology is fantastic, and that it's much better than he would have anticipated had we chosen the traditional treatment (CVR). That's fabulous news, of course, but we can see that a little bit each day, as her eyes align and her nose straightens. It's interesting to go to her crib each morning when she wakes up, since she looks just a little bit different each day. Of course, babies grow quickly, and that's true of all babies, but especially striking when the changes are happening with the help of a distractor!