Update of Will's Vascular Malformation

We have now seen/met the specialists that we will be dealing with at Vanderbilt Children's. We will continue to see Dr. Thomas (urology), Dr. Neblett and Dr. O'Neal (pediatric general surgery), and Dr. Pearson (neurosurgery) every 6-12 months for follow-ups on Will. JT and I have been a little disappointed at these doctor visits when everyone wants to tell us how "impressive" and "remarkable" Will's MRI is, but no one wants to do anything about it. We have finally realized that no one is doing anything, because no one really knows what to do. Unfortunately this is something that there are no clear answers for. We will just continue to watch Will as he develops and grows and pray that this is an issue that we won't have to deal with again.

The malformation involves veins and possibly some lymphatic system. It does not involve any arteries and this is a very good thing! (If you Google vascular malformations, AVM comes up and doesn't sound too good, but Will does not have that!) Because arteries are not involved, there is less likely to be a problem in future. For now, no one thinks that surgical intervention is needed since Will has no symptoms. This is great because surgery would not be easy and Will's quality of life would probably not be so great - they would most likely remove his colon/rectum if the vessels were removed because they supply the blood flow there. 

Potential problems that we are watching for: 

- Neurological - seizures, numbness of extremities, weakness, paralysis - Dr. Pearson showed me the MRI of spinal cord area and everything looks great. This malformation is close to the end of the spinal cord, but not touching it. So hopefully none of these things will ever happen. 

- Blood clot - This would most likely occur in his right calf or foot, not in abdomen. He would be treated with blood thinners if needed.

- Vessels go deep into colon and rectum, so we are watching for any blood or severe constipation. Never been an issue so far. 

- These vessels kind of put his bladder out of place. Dr. Thomas is confident that this will not be an issue unless everything gets bigger and starts pressing against it. He will keep an eye on this with ultrasounds every once in a while.

As we always tell everyone, Will is FINE! He is growing and developing exactly as he should. I think the doctors all agree that this is going to grow with him instead of him growing out of it, but it doesn't necessarily mean that he will have problems. 

Hopefully this blog can now go back to "fun news on Will" instead of "Will's Medical Chart".