Update from Cincy

Well, today didn’t exactly go as planned…but that isn’t necessarily a bad thing. As most of you know, we are in Cincinnati for our daughter, Anna Grace. The plan was to consult with the pediatric neurosurgeon today and he was going to perform a surgery on her to remove a lipoma (fatty growth) from her spine.

We met with Dr. C (the neurosurgeon) and his team at 1pm this afternoon. He performed a fairly general physical exam when he got into the room by checking the sensation on the bottoms of her feet, examining her back and spine, and getting some basic information on her overall health. Then he took us into a room with a huge flat screen TV to go over the MRI films. I will try not to get too medical in my descriptions, but bear with me.

Typically, if someone has a lymphatic malformation (external swelling/fatty tissue) on the outer portion of the body and a lipoma internally, there will be some point where the two are connected. It is so rare that the two don’t connect that Dr. C didn’t fully trust the films when he saw that AG’s didn’t connect at any point. It wasn’t until the physical exam that he was sure this was the case. You may have heard Emily or I talk about the spinal cord being tethered to this area…well the point of connection for the lymphangioma and the lipoma would have been the point of concern for tethering. Since hers don’t connect, that is not a concern. As it turns out, the tethering in her case is internal. This has its own set of concerns, but it is not really vital to do anything about that right now.

So with all of this in mind, Dr. C is not sure if we should proceed with the surgery right now. His major concerns are cutting through the lymphangioma to get to the spine in order to remove the lipoma could cause more trauma and issues with the healing process than the good that would come out of removing the lipoma. The lymphangioma at the point of entry for surgery is just over 1 inch thick. The possibilities for complications during the healing of this area are vast.

With “Plan A” on the ropes, the newly formed “Plan B” is taking shape. We will meet with the Anesthesiologist tomorrow (Tuesday) at 9am just in case surgery still takes place later this week. Then, sometime between Tuesday afternoon and Wednesday, we will meet with a plastic surgeon that will assist Dr. C with the concern of lymphatic healing. Also, there is a good chance that AG will have another MRI to focus on some specific areas that the last MRI didn’t fully cover (that MRI was specifically focused on the spine and not the areas currently being discussed). While we are here, we are also going to try to touch base with the lymphatic malformation team that we have seen up here before. All in all, there are a lot of decisions yet to be made and a number of tests and opinions to be sought.

Please pray for us to make wise decisions and for our team of specialists and surgeons to continue to keep AG’s best interest in mind. Also, pray for us to have the resilience to stay the course. Finally, pray for rest. Traveling is hard on AG and Emily. God IS in control and he knows way more than us what the diagnoses and outcomes are! As information continues to become available, we will update the blog.