MRI results

MRI was Thursday and the report was available to Dr. Huss (pediatrician) and Dr. Thomas (urology surgeon) Friday afternoon. Both of these doctors are great about staying in touch with me and giving me any info that they can, but this is not their area of expertise. They are basically having to figure out which specialist to send us to.

Dr. Huss called me Friday and said that the MRI showed vascular malformation that begins at the end of the right kidney, goes all through the pelvic area, and ends in his right foot. There is also a lot of soft tissue in his pelvic area (basically his butt has soft tissue instead of fatty tissue). The hemangioma on his back is part of this system. He called a neurosurgeon at Vanderbilt to review this because of how close it is to the spinal cord. Dr. Pearson wants to meet with us sometime in the future (not urgently) just to discuss what we would do if there was a developmental problem in the future. Next Dr. Huss called a cardiologist because there is a medication that can help shrink the vessels, but it is a drug used to lower blood pressure and heart rate. So if he was put on that, Will would have to be followed by cardiology. There are no heart concerns now! The cardiologist is part of a committee at Vanderbilt that meets a few times a year to discuss cases of vascular malformations. They are meeting tomorrow (9/11) and have agreed to put Will on the list. I think this is a great! A team of people who deal with this pretty regularly all giving thoughts and opinions. I expect to hear from Dr. Huss on Wednesday about what they say.

Dr. Thomas has contacted a general pediatric surgeon and they are going to review the MRI together again this evening along with the radiologist. Hopefully I will hear from him tomorrow.

Dr. Thomas and Dr. Huss have been communicating with each other. They are working together to make the best plan for us. JT and I feel that they both have a great interest and concern for Will, so even though they don't really have to be involved anymore, they seem to be sticking around. I really appreciate that!

We keep hearing the words "impressed" and "remarkable" when these specialists are reviewing the MRI. The size of it all is apparently what has their attention. Because Will is growing and developing as he should, there is no immediate need to do something about this. I'll know more in the next few days and hopefully have an update then.

I apologize if you have been asking about Will and we haven't given you much info back. It is because we don't know! I have written out everything that I have been told here, but I don't really know what it all means for Will in the long run. I'll keep posting when there is more to tell.