Our family has lived in a whirlwind over the past couple of months. All the boys played Upward basketball at church, with my girl loving being a cheerleader for the first time. I also coached a girls team this season, so we had five games we HAD to be at every weekend. Upward is a great program, and I would highly recommend it to anyone. But I am so thankful that it is over.
We went to see my girl's specialist last Wednesday and are thinking maybe she enjoyed cheering and jumping just a little too much because her device is pulling through her rib again. (He didn’t actually say what caused it. It’s probably a combination of activity and growing.) It is not completely through the rib, so that’s a good thing. It looks like it’s about halfway through.
We also found out that her spine is still rotating, which has really always been one of our biggest concerns. Well, that and her lung are the biggest issues. The “cut to the chase” version is that the VEPTR device is working to her curve from getting worse, but it doesn’t keep her spine from rotating.
The plan is to go in a couple of weeks and try to extend the device again by another cm. He is hoping to do this without coming all the way through the rib. (Yeah, I’m hoping for the same thing.) His goal is to buy her a little more time with the VEPTR.
The next stage of the plan is to try and stop the rotation of the spine. The curve continuing will smush her lung, and the rotation will do the same. (I know that smush is not a medical term, but it works for me.) The option that he recommended is in the next six months or year, he will need to remove the VEPTR. Right now, the plan is to fuse the vertebrae that are causing the rotation, and install a new device, called a Shilla.
The Shilla is a new thing that he has mentioned for a couple of visits. The inventor (or whatever you call him) is in Arkansas. It is still considered experimental, so there’s not a lot of data on its success rate. It is some type of rod that will be attached on both sides of her spine with screws, and will extend on its own. This would be great to prevent all of the little surgeries between the biggies. This is definitely a plus.
Like every option we have had up to this point, there are always unknowns. With the device being considered experimental, the first unknown is how the insurance company will treat it. We’ll definitely be trusting God to work that one out. I know that the VEPTR was $22,000 and it is only one rod. Hmmm…..I’m thinking that we oughta “ebay” the VEPTR to pay for the Shilla. Surely there’s a market for titanium.
The other unknown is the surgery itself. Our doctor told us that his experience with the Shilla was with a goat as the patient. You can only imagine the amount of self-control that I exhibited after he gave us that little tidbit of information. Do you know the number of jokes I could have made with that one? Bless his heart.
So that’s the update with our little Super Girl who’s walking around with another ½ broken rib. Please pray for wisdom during the upcoming surgery that he is able to extend without completely coming through the rib. Also pray for wisdom for our next step in the process. And that the man puts one in on a human in the meantime.