Well, we made yet another trip to Rochester today. Andrew's knee appointment took about an hour then we went to see Dr. Silberstein about Sumana. We were able to see her split spinal cord in the MRI (the medical name is: diastematomyelia---I had to ask for the spelling, of course!!) It seems to split in her upper back where her scar is. It splits for several inches and them comes back into one solid cord. They can tell that she was born that way, so it is of no current or future concern. (Whew!)
However, the surprise was in her lower back: the lumbar region. There were signs of tethering of the spinal cord. This basically means that it is 'hung up' on something, not free floating like it should be. Dr. Silberstein and Dr. Sanders had already consulted each other about these findings. Since it is in a completely different area than where the VEPTR will be placed, the surgeries cannot be combined. Dr. Sanders asked that the tethered cord be repaired and then we can schedule the VEPTR surgery 6 weeks from that date. Thankfully, she can have the repair surgery done on Monday, the 11th, so we're looking at the week of June 22 for the VEPTR. That's much later than I had hoped, but I am very thankful that the tethered cord was found NOW and not in the typical fashion. Usually, the person with spina bifida will have pain, or loss of feeling or bladder control first, THEN the tethered cord is found. It's quite a blessing to have this discovered BEFORE Sumana encountered any problems.
Remember what I told you about Sumana's feeling toward needles?? After her appointment with Dr. Silberstein, she had her pre-op physical with the NP and then had to get bloodwork done. Oh, boy! What a scene! The tech could see how wild she was just seeing the tubes and asked if we needed a 'holder'. We both said, " Oh, yes!" Thankfully, the 'holder' was fantastic with her. She asked Sumana's favorite song and she said 'Jesus Loves Me'. Well, let me tell you, that African American woman sang verses and tunes I'd never heard before. It was sooooo beautiful. It really took Sumana's mind off the whole needle thing. The woman said, "that's the way we sing it at MY church!" It was sooo cute!
So, we call Friday afternoon to find out her surgery time on Monday. All we know now is that it'll be early afternoon. That will be a long time without food, but I think she can do it. She's pretty tough when she wants to be. I hope to call Dr. Sanders' office tomorrow and get her VEPTR surgery scheduled. It seems like we've had a ton of progress in just a short time. It's funny how the wait seems so long, then things happen so fast I can barely keep up!