Life as a Leach

We went to CHOP orthopedics today and are still reeling from all of the information.  I'll do my best to explain everything, but I'm still processing myself.  When Dr. Anari came in, he didn't beat around the bush.  He told us he had spoken with the pulmonologist we saw last week and that it's obvious we are seeing a decline.  While the kyphosis looks to be about the same on the xray, there could be subtle changes that could be pushing Abby over the edge, so to speak.  Then he proceeded to tell us that Abby was one of his top two or three patients in terms of difficulty, complexity of the chest wall, and high risk.  Everyone has to be good at something, right?  😒 He laid out 3 options for us to consider. 1.  This is the most aggressive option.  Abby would be put in a halo for several months, then she would go into surgery for a removal of a section of her vertebrae.  It is called a Vertebral Column Resection and you can read abo...

We saw Dr. Campbell this morning.  He took one look at Abby and said, "Well, we've gotta get that VEPTR back in!"  We wholeheartedly agreed!  When we asked about the opposing opinion we had before, he noted that in this case, being old equals having more experience in these situations.  He will talk to the other surgeon to let him know the plan. So what is the plan?  Well first, we have to get this wound healed up.  Nothing surgical can be done until it's closed.  When it is closed, we can schedule surgery.  The good news is that the wound shrunk a centimeter in both length and width in the last week!!!!  This is fantastic news!   The kyphosis still needs to be dealt with, but the ribs (well, the lungs) are the primary concern right now.  We may still go to Boston for the kyphosis, but we are going to take care of this first.   He also LOVED her shirt and took a picture of her to use in a slide for a presentation he is doing fo...