Matt and I decided to pursue something that we have been thinking about for a while. It's a big, big step, but I think it's needed.
As you know, Abby has a rib-gap anomaly that has caused her ribs to be in pieces. The concern is that the ribs won't expand properly to allow the lungs to grow. Until now, we have been very occasionally followed by a thoracic specialist at JHH. I felt comfortable with him, but he has now taken a position at a hospital in Florida. Sadness. Now, our other doctors can't tell us who we should see instead. They've basically said to just wait and see if she starts to have respiratory issues and deal with the ribs if she does.
That didn't sit too well with us, so we made the decision to go visit Dr. Campbell at Children's Hospital of Philadelphia (CHOP). Dr. Campbell is the creator of the VEPTR rib, and he is one of the only people who has actually seen what CCMS ribs look like! Here is a video that actually shows the surgery (it's a little bit graphic!)
We are really hoping to avoid the VPTR rib, but we want Abby to be followed by someone who is knowledgeable and capable of helping us make the decision if it comes to that. I'd much rather have her already known by Dr. Campbell if she begins to have respiratory problems.
Our appointment is August 12th. If he feels that further testing is needed, we will go back up to CHOP for three days for multiple appointments and diagnostic tests. From there, a multidisciplinary team will get together and make the decision as to whether the VEPTR rib is needed or not.
Along with going to CHOP comes a whole host of other issues...like getting insurance approval for going out of state, getting xrays and medical records transferred, and dealing with a whole new hospital. We're hopeful that insurance won't give us a hard time, since CHOP is by far the closest hospital where the VEPTR rib surgery is performed. JHH doesn't do it, so we really don't have a choice.
Please pray for our appointment, and for all of the red tape that comes along with it!